Can't Catch Me

Come On In

2012-01-12T20:58:00.000-08:00

Perry, Iowa

2012-01-12T09:41:00.000-08:00

Yesterday was the first snowfall of the winter season. I watched it anxiously last night, worried about driving the 80-mile round trip to Jacob's school this morning in far below freezing temps, and praying my vehicle would keep us safe and warm.

And now here I am, two hours after Jacob waved me a happy goodbye, lounging contentedly at Village Inn, eating banana pancakes, alone.

Alone!!

I love being alone. Even if I knew someone here in small-town Iowa to invite to breakfast with me, I wouldn't. There are several other patrons in the restaurant around me, and I can hear the low hum of their conversations and the distant clinking of dishes in the kitchen. This gentle buzz of life and activity makes me feel wide awake and part of a community, while enjoying the peace of not having to entertain or care for anyone but myself.

I get the impression that most of the people here are "regulars." Its kind of comforting, seeing them greet each other like old friends and waitresses delivering coffee or hot chocolate to their tables even before their jackets are off. Maybe this little city will grow on me.

I'd hang out in local cafes' every day if it was in the budget to do so. Reading the local news, catching up on emails, and updating my neglected blog. And, of course, savoring the banana pancakes (which are perfectly soggy with maple pecan syrup.)

It is Jacob's 8th day at his new school. It has gone remarkably well, but for one day. Three days in he decided he didn't want to get in the car for our 45 minutes drive to the school. Being the stubborn, strong kid that he is, I couldn't force him.

I called his new teacher, Erin to let her know what was happening and that Jacob would be absent, and she decided right then that she would come get him herself. She explained that if he knew he could fight me to stay home, he'd continue to do it.

She was right, of course, saying we couldn't let him win this one. He would have to learn that he could either ride with me in relative comfort, or be forced to leave me at the doorstep and ride with 4 people he barely knows. (And I should note here that never, ever, in any of the past schools Jacob has attended, was the staff willing to do anything close to this to help me out.)

As I waited for her, and three assistants, to arrive at my door, I was preparing for the worst.

And it was THE WORST.

Imagine an intense, emotional movie scene where there is a crazy mental patient and the guys in white coats are there, wrapping him in a straight jacket and tearing him away from everything familiar to put him in a van and transport him to the nut house forever. It was like that.

Jacob was screaming, crying, and it took all four of the adults, who are carefully trained in ways to restrain a student without hurting him, to manhandle him into the van.

He was scared, completely unsure of what was going on. I was feeling regret at allowing this to happen to my son. They closed the van door as he was crying out, "mom! mom!" As soon as they were out of my line of vision I broke down.

This child is like an extension of myself. My most constant companion and a huge chunk of my heart. How could I let them take him away from me in this manner? Surely I was damaging him for life.

I cried and regretted it for a good 20 minutes, at which point a text came in on my phone. "Jacob is fine. He stopped crying after 10 minutes and is playing a game. You can breathe."

Of course, then I cried more, with thankfulness and relief that my baby was OK and I was not a terrible person.

When I picked him up that afternoon he seemed completely happy and not scarred in any way. Another few tears of gratitude escaped. I crossed all my fingers and toes that it would only take that one time to convince Jacob to get into the car with me every morning.

I haven't yet uncrossed my extremities, but things are looking hopeful that he is adjusting to this new routine. I know that he will make great progress as he continues to attend this school, and I am so pleased at what has been accomplished so far.

And so here I sit, now done with my breakfast and my belly full, thinking about how I can fill the rest of my day.

But, wait! I am realizing that I don't have to rush anything. It could be like this Monday through Friday for months on end! And this cold winter afternoon seems just perfect for a nap.

Alone.

New School

2011-12-06T14:03:00.000-08:00

Went to visit Jacob's new school today. It was excellent. The school is old and charming, and every area of it is set up for special needs kids. There are 37 students total as of now, with 37 aids and 7 teachers. Everyone who works there, form principal to teachers down to janitors, have MANT training- skills for keeping a child safe during aggressive behaviors. I saw this in action as a kid was running down the hall and, in addition to the staff following him, the principal stepped in to stop him as he got close to the stairway.

The school has kids age 9 to 21. The morning are focused on educational goals, afternoons more on living skills. At about 13 they begin teaching them work skills- shredding, wrapping, labeling, kitchen basics, etc so that they can possibly go to work when its appropriate for them to. They also have two outings a week- one fun (swimming, bowling) and one that is also fun but more for learning to be in the community (eating out, shopping, library).

1/3 of the kids live there, 1/3 live in community group homes, and 1/3 live with parents. Its great that there is the option of having them live there, since they would be so familiar with the area, the staff, etc. If this was ever something we needed to consider with Jacob, it would be great to have him already settled in the school and with people he knows.

Its got beautiful grounds with several old brick university-looking buildings. I'm sure it is gorgeous most seasons of the year. Its a 45 min drive from my house, but school doesn't start till 8:45 so it won't be hard to get him up and there.

I saw the kids working in what would be Jacob's classroom. They were all one-on-one, doing IEP goals. They had iPads for student use, PECS, and everything a kid might need to communicate. There were 6 kids in the classroom, and 7 adults. It was great. The teacher seemed very sweet.

I'm sure I will remember more to add later, but it was a good visit and I am anxious to get him started. It will most likely be after Christmas break.

Yay!!

Here Is What You Have To Look Forward To Reading

2011-11-27T21:57:00.000-08:00

Here are teasers of the things I want to write more about in the next few weeks when I have my house unpacked and my mojo back.

*Jacob made the local paper in Salem when the police had to find him for us, once again. This was true terror for me and Chris. Thank heavens the article let us remained anonymous and lessened the finger-pointing.

*Jacob broke my fairly-new MAC and lost all my pictures and documents. (Which is why I have been AWOL.) My heart is broken for all the beach, first day of school, downtown Salem and other great pics I lost on my dead hard drive. :(

*During our move across the country, a stranger called tho police when she saw us manhandling Jacob into the car with force. Um, Lady? what do you advise we do to keep our teenage-sized-but-toddler-minded-and-violently-tantruming-autistic-child-who-can-escape-any-kind-of-safety-restraint from running into traffic in a strange city? Cause I promise you that, left in your self-procliamed more capable hands, he would have kicked your 115 lb butt and gotten away, weather you are a nurse or not. But thank you sooo much for glaring at us from across the parking lot until the cops showed up. It was oh-so helpful to the situation. And for the record, the police sided with us. Burn.

*3+ months into the 2011-12 school year, and he hasn't gone a single day. Mommy needs a break.

*Even though Jacob was approved in the past for the Katie Beckett Medicaid Waiver, and rumor was that, once accepted, a child could not be denied in the future, AND said Katie Beckett was an Iowa citizen, all signs point to him not being eligible for the program in IA.

*I hope I am wrong here, but so far my research says that, here in Story County, kids with ADHD can get respite and other supports. Kids with a full blown autism diagnosis don't qualify. I'd gladly let him bite all the involved lawmakers to get that ridiculous rule changed.

*So far in Iowa people have been very kind. We have had dinner invites, cookies delivered, and even got to put Jacob on a horse, which he loved. I truly hope they all still like us after they get to know us better and Jacob hits, bites, steals toys from, or in some other way tortures the local children.

Now that all these headlines are out there, I have to hold myself to expanding on them. Stay tuned.

September 11, 2011

2011-09-11T22:52:00.000-07:00

2011-07-30T22:24:00.000-07:00

After 2 weeks of relative peace- I leave the house for a couple hours and my kid decides to break the trend.

The iPad battery died and it completely set him off. Despite Brittany's efforts to make him happy with an alternative while the iPad charged a bit, Jacob was already swinging and biting and pinching her as an outlet for his frustration. The iPad got thrown several times, at one point she had to lock herself in my bathroom while Jacob threw objects at the door from the other side. She has been trained in self-defense and restraint (the same program we are currently learning) yet was unable to use her skills to contain him and block his limbs. In desperation, Brittany screamed at the top of her lungs and Jacob stopped his freaking out and stared at her for a moment, and then walked away. End of tantrum.

And I was leisurely wandering around a garage sale a few blocks away, completely missing a phone call from Brittany. I came home about 30 minutes after the tantrum had ended. Jacob seemed like nothing had even happened, but Brittany was obviously in recovery mode. Tears were shed. She told me the iPad was broken (it isn't) and apologized for making him mad and told me the neighbors may be curious about the scream. I tried to reassure her was not an isolated case and his reaction had nothing to do with her respite skills. It could have been any of us in her shoes. I really, really hope this isn't the end of another caregiver.

2011-07-12T13:24:00.000-07:00

So I have noticed for the past 2 weeks or so that Jacob is walking differently. He's always been pigeon toed and used a funny gait, and when I first saw him moving this way, I assumed he had a rash on his bottom, and when that wasn't so, I checked his feet and shoes to look for a sore spot or blisters.

But now I'm thinking it may be a stim way of walking. Like hand shaking or rocking, some kids with autism walk on their toes. I wonder if years of medication had suppressed it. Its like he's just gotten off a horse and trying to walk tippy-toed.

I'm not worried about it, but I am going to keep a close eye on it. I think there may be all sorts of things in Jacob's behavior, health and personality that may be coming through after the meds are completely out of his system.

2011-07-11T19:12:00.000-07:00

Another day almost over with no aggressiveness or tantrums. AND Chris got Jacob in the bath this morning. I could get used to this.

Note Pad

2011-07-09T21:34:00.000-07:00

*Jacob said, several times, "Mom, help me." Unmistakably. Awesome.

*Somehow he shot himself with a paintball gun point blank on the hip. We all tried diagnosing the scene, but no one can figure out how he managed it. Its a perfectly round welt that will hurt for a few days. Ouch.

*No real aggressive episodes for 3 days. A bit of hitting and chasing, but none of what I call a full-blown tantrum.

*Jacob is eating nearly a third of what he had been a month ago. The med was known for increasing appetite and resulting in weight gain, and we have really seen that for the last few years. Now his appetite looks like that of a regular kid to me. Maybe we'll see some weight loss!

*No bath/shower in 8 days. I wipe him clean every chance I get, but he refuses to bathe, and it isn't worth the pain to me. Eventually he'll decide he wants to play in the bath again, hopefully sooner than later. At least he is in the good habit of hand washing.

*Madison downloaded a free app to her iTouch called "Tap to Talk." Jacob picked it up right away and within 2 minutes had made it say, "I want soda please." Could this be his first technology assisted request?

2011-07-06T19:57:00.000-07:00

The longer I go without blogging, the more I avoid it. Today I decided that I don't need to worry about catching people up to date, and just write what I need to write to process whatever is happening in my life. So I'll tell you that the past few months have been our hardest, physically, emotionally, and financially and leave it at that.

Its 3 weeks into summer. Tyler had barely been home, already having attended two different football camps and begun practice for the freshman team. Right now he is in CA with a friend doing all the fun, touristy stuff in the Bay Area. I'm surprised that I am missing the revolving door of teenage boys.

Madison went to Girls Camp and had a great time, and also spent a few days camping with her grandparents. Just like I did at her age, Maddie prefers to use her summer break devouring novels and catching up on TV shows.

Jacob started off his summer by having the worst meltdown of the year on the last day of school, including punching several of the classroom aides and peeing on a wall. These three weeks since then have been filled with aggression and emotion and some of the most intense interactions to date.

Not awesome.

Today he has cried for the majority of the day, real tears running down his cheeks, which kills both Chris and I because we desperately wish to be able to understand why he is so upset. He tried over and over to explain to us what he wants/needs/feels but we just don't get it. Then the sadness turns to anger, which escalates much too quickly, and this cycle has continued all day.

Thats all I got.

2011-05-19T22:06:00.000-07:00

I am really struggling. Several things in my life are extremely difficult right now, and I feel at a loss for how to fix it.

I am a fixer, an obsessive researcher, a don't-rest-till-I-have-an-answer type of woman. So trying to continue day to day with things I have no control over is really killing me.

The future is all up in the air. My husband lost his job. Its been over a month already and there are no prospects. We will have to move. We could lose our house with no income to pay the mortgage. Bills are being pushed aside and continue to grow. Its a heavy, heavy load on Chris and I both. He's feeling like he let us all down and I admit to agreeing. I am let down. I love this man, I need him. That hasn't changed. But we have a family that relies on him and now we are free-falling.

We lost our insurance. This alone will pull us under. I can't survive a single day without insulin to manage my diabetes.

Jacob needs his medications right now more than he ever has. The aggression has been intense. Today he hurt a caregiver. She left our house with bruises and tears. He violently threw things out the second story window. He slammed Chris' arm in the door and really hurt him. I had to hold the handle of his bedroom door as he threw furniture at it from the other side. I stood there crying as I forced my little boy to stay in his room in hysterics.

I am overwhelmed and afraid for the future.

I have to remember that I am loved. By my family and friends, and by my Savior. I am not alone despite feeling that way. I get hugged several times a day by my favorite people and we continue to laugh together in spite of it all. These are my tender mercies.

Cherry City In Bloom

2011-04-05T00:22:00.001-07:00

~Capitol Mall, Salem, Oregon 4/4/11

2011-03-19T23:30:00.000-07:00

Winter

2011-01-24T12:30:00.000-08:00

Lets start back in November. Jacob was doing wonderfully. Good communication, hardly any meltdowns, American Sign Language progressing nicely. It was all good . We had a doctor's appointment towards the end of the month, and I was pleased to report no med changes were needed, everything seemed to be flowing smoothly and peacefully at the Jones home.

A few months prior, I had made plans to attend the wedding of my younger sister in Utah. I was in charge of a bridal shower the weekend before the wedding. I was also needed to help with the reception, which was being help at my parent's house so there was a lot of decorating and food prep to take care of. All the wedding stuff sounded fun to me, and I was excited for the upcoming trip.

I was to leaving a week before Chris, Tyler, and Madison, with the three of them arriving two days before the wedding so we could attend together. We had two different caregivers scheduled to take care of Jacob at our home, and one night for him to be with Chris' parents. The five days were covered. Ideally, he'd come along with us to Utah, but realistically, there was no way we could be involved in all the wedding events and be the help my mom and dad needed if Jacob came.

A week before I was to leave, Jacob started having regular, aggressive outbursts. He hit a teacher, was unusually mean to Jenny- a caregiver who has been with us for nearly two years, had taken to barricading himself in his room with all his furniture against the door if he didn't want to go to school or wherever else, and was pretty much a monster of a kid.

I left, relieved to be escaping but worried for my husband, and Chris had to be the lone parent for the week. He and I were on the phone several times a day, going back and forth over our decision to leave Jacob with people who, while good with him and somewhat experienced in his negative behavior, just weren't as capable as us at dealing with the worst 24/7. We knew if things were too bad to leave to someone else, Chris would have to stay home.

I spent all my time praying hard that Chris would be able to come, that Jacob would be ok without us and be a happy kid if only for the time we were gone. Attending the wedding of my sister, and being together without having to keep an eye on Jacob every second was a big deal. The night before we were still unsure. But the day of the flight, and after much prayer from both of us, Chris made the choice to come and leave our son behind.

A miracle occurred. The boy was perfect. He got on the bus in the mornings without a fight. He did well in school each day. He got home and off the bus without hitting any of the other students or the driver. His afternoons were peaceful as he watched movies and created masterpieces out of paper and tape, and his bedtimes were smooth as could be. Every day, no matter whom he was with, he was awesome.

We'd get text messages and phone calls regularly telling us everything was still fine, not to worry, to relax and have fun. And we did! The wedding was beautiful, we saw lots of family and ate tons of yummy food, and enjoyed being able to stop and talk to whomever we wanted to without having to jump up every two minutes. It was a lovely vacation that went by way too quickly.

Skipping ahead to now. This has been one of the hardest months I can remember. There are lots of miserable details, but the gist of it is that, I believe, Jacob is hitting puberty and his hormones are flowing and it whippings our butts. He's not any happier about it than then the rest of us. The roller coaster of moods has to be just as draining for him and it is for me dealing with the resulting behavior.

We went to the doctor again a few days ago, and this time the report I gave wasn't as great. Medications need to be changed, hopefully resulting in reduced aggressive episodes and more consistent sleep. This change will start tomorrow, and time will tell if its a success.

I have heard horror stories about puberty and boys with autism. I knew it was a rough time, possibly the hardest time of all. Aggression at its highest with a surging strength to boot. In most ways he's still so young; needing to be cuddled to sleep, crazy about cartoons and superheroes, and requiring my constant attention. He has baby soft skin and perfect, chubby arms and hands, and his head is so soft to nuzzle. I still feel the physical bond to him that a mother feels with a baby or a toddler.

But he is far from a toddler. He's an almost-ten-year-old boy who's mind is not keeping pace with his body. I am having to consciously separate myself from him at times. Let him have bad moods and say "no" just like any pre-teen would do. Reduce the kissing and child-grooming I do in public to help keep curious glances away. A mother doing these things to her small child is normal and accepted, but Jacob is no small child.

He still has his moments on adorable-ness. The hitting, biting, etc. doesn't happen every second of the day. If I count the minutes, the actual time he spends hurting one of us is small percentage of the day. Its just harder to recover from and forget. A 15 minute tantrum and hard bite on the arm often outweigh the one hour spent peacefully side by side watching Scooby Doo. Its unfortunate that my days are often summed up by how many times I got hurt instead of how many hugs I received. I'm working on that.

I have a feeling times will be increasingly hard for a while. Puberty can last for years. I pray I am up to it, and can earn to manage with patience and understanding. Most of all, I hope that he never loses the need for me to put him to sleep at night. I can't help but think he is the most wonderful boy ever as he wraps his arms around me so tightly and we lay face-to-face with his breath on my cheeks. I need that from him as much as he needs it from me.

Thank You

2010-11-25T16:56:00.000-08:00

Its only 5 pm, and already the food has been eaten, the company has left, and most of my family is napping with full bellies.

I have so much to be thankful for in my life. Health, home, employment, a partner who loves and respects me, children that I laugh with daily, and God who gives me all of this.

I am particularly thankful tonight for an encouraging, understanding support system. The teachers, caregivers, family, friends and even strangers who help me keep my chin up when the going gets tough.

Thank you to my 10 year old neighbor who has a keen eye for when Jacob has escaped, by way of garage or neglectfully unlocked front door, and either patiently walks him back home, or calls me and lets me know she is running after him. Lexi, I appreciate you.

To my neighbor to the left who stops by occasionally with produce from her garden or goodies from her kitchen- it brightens my day to see your generosity and thoughtfulness. And we all love it when your puppy wiggles her way under the fence and into our yard. What a delightful creature she is.

Those who care for and teach my children have a special place in my heart. In church, in school, and in my home- You are giving me time to be a better mother, and helping my children to be happy and know their own strengths. I am a big fan of every one of you.

To the special needs school bus drivers who have a particularly difficult job and are surely underpaid and overlooked too often- forgive my child for his aggression and noise. Know that I think you are heroes and pray regularly for the safety of you and the young ones you transport.

A big hug of thanks to the unknown people we encounter daily who smile at me and my child, who take a moment to tell him hello or comment on his costumes and creations. You inspire me with your simple kindness. It is truly a divine quality.

To my family- I thank you for the love you show me. For the hugs and kisses, the cards with words of affection, and the happy moments we share. I hope you know I'd drop everything for you, anytime.

My heart is full, and I give the credit to my God. Thank you for every big and little thing. Thank you for understanding me and knowing what I need. I will work every day to show to others the charity that you show to me.

Happy Thanksgiving today and every day,

Alaina

FINALLY!!

2010-09-19T00:51:00.000-07:00

Jacob has a friend. Wait, let me say that again. JACOB HAS A FRIEND!!!

This is big. Kids that Jacob interacts with on a daily basis generally play side-by-side without much interaction. We have watched him play next to but completely ignore other kids for years. I have spent so much time protecting other children from him and making sure they have an acceptable distance between them, and that doesn't lead to much bonding with the children around him.

This week a new kid joined Jacob's class. His name is Ian, a darling, happy redhead with an enormous smile. Ian was already familiar to us because he has been in school with Jacob in the past. But after two years in different schools, it was a surprise to see him on the school bus again.

This kid is as happy and outgoing as Jacob is serious and self-centered. The two boys immediately recognized each other and Ian little voice was clearly excited as he greeted me and me son as we climbed the school bus steps.

"Jacob's mom! Its Jacob's mom! Hi Jacob! Hi!" Jacob went directly to the seat next to Ian and showed him the map he created and was carrying in his pocket to school. It was a quick, simple exchange but it meant a lot to a mom who has cried for her boy to have a friend of his own.

The next day was the same, with both boys anxious to sit together on the 20 minute bus ride. Ian doesn't seem to mind or even notice that Jacob isn't really talking back to him. They just have a natural chemistry.

I was talking to his teacher about this blooming friendship, and she let me know that the two boys also sit next to each other in their classroom, and tend to walk together in the hallway. Sounds pretty mild to those of us who are used to making friends and interacting with people, but for Jacob it is new and uncharted territory.

Never invited to a birthday party or even a playdate, Jacob has missed out on these typical rights of childhood. Now I'm imagining all sorts of outings to the park and actually inviting someone to play at our house. Awesome.

I really hope this sticks. My little boy deserves a buddy of his own, one that isn't hired or bribed to play with him. I could kiss this kid. And his mom. I wonder if she is as happy as I am about this new development?

Everybody pray that it lasts, and I'll keep you posted.

Yay!!

Balance

2010-09-17T19:03:00.000-07:00

Sometimes I get stuck thinking that things with Jacob are so hard, so emotionally draining that it will never get better. The 60 minutes of aggression outweighs the other 23 hours of relative ease and becomes the focus of my day.

I think this is fairly normal- an overwhelmingly intense event stays at the front of your mind and milder, more typical things take a back seat. The physical pain of being bitten or hit gradually subsides, but the emotions that go along with having to defend your self from a child don't disappear as easily.

I have three big, purple bruises on my right arm. All are large, round circles, unmistakably obvious bite marks. One of them is from just two hours ago.

Right now Jacob is peacefully, happily watching a movie in the room next to me. To see him, you'd never guess that just a short time ago he was overpowering me with his bulk and sinking his teeth into the most convenient spot on my skin. If I were to call him over to me at this moment, I have no doubt he'd give me a big hug and a kiss and be completely charming.

So simply he can go from rage to calm and I envy him that. It takes me much longer to recover.

I often turn to writing to work through my feelings regarding a particularly tough day. As I sit here right now typing I feel myself becoming calmer, more able to process what happened and think about it as a mother and not a victim. I can separate the acts of aggression from the real personality of my son.

In a way I am very blessed to have this outlet. It an easy thing for me to sit at the computer and express myself. So I wonder how Jacob manages to work out his feelings. Sometimes it seems he doesn't have any sympathy, any understanding of his actions, and its no wonder he acts out in the first place. If I was unable to write these things down I'd most likely be hiding in my room and sobbing into my pillow. The feelings have to come out somewhere.

I have learned over the years not to hold anything Jacob does against him. His actions are most often the result of not being able to communicate with those around him. He tries so hard to express himself and we continue to fall short in understanding him. Hunger, pain, loneliness, fear, excitement- without words there is only the body to use to make others aware of what he is going through. It all comes out as anger.

Despite advances in many other areas, this physical intensity doesn't seem to be going away. So I tend to focus on it. I let it be the benchmark of my day. I could tell you that Jacob hasn't worn diapers in two and a half months, something I thought I'd never see. Or how he is trying to say more and more words everyday, despite our struggle to understand. He persists.

If Jacob isn't curling up in to a ball and giving up, then that is not an option for me. He is an example of enduring and pushing against the barriers that restrain him. I admire this strength that my child shows.

As I get ready for bed each night, I go over in my mind the events of the day. I make an effort to learn from both the best thing and the worst. What can we do differently tomorrow to make it a more peaceful and positive day? The answer lies with my own actions and responses to everything that occurs.

My goal is to focus on the full half of the glass, not the empty part. The well-known saying says to count your blessings, not your trials. Its good advice. Instead of counting bruises I should be counting kisses. The bruises never equal the amount of affection I am shown by my son. The hugs are many, the hits are much, much less. This little boy loves me and he shows it. And a few minutes of pain should not be more memorable than the 30 times he kissed me up and down the arm.

I am continuing to learn every day how to parent this child. I never want to be without his sweet, gently displays of affection. From this point on I am going to count every kiss twice.

Flight Time

2010-08-08T20:53:00.000-07:00

We had a great experience a few weeks ago that needs to be shared. Last month I was doing some exploring of websites that come up when I google "autism" and I found an ad for a nonprofit called Challenge Air.

Challenge Air is a group that organizes events where children with disabilities of any kind can experience flying in- and sometimes piloting!- a small airplane.

The timing of discovering this opportunity was impeccable- just a month to the day until a Challenge Air event was being held just 30 minutes from our hometown. There are only a handful of these that happen each year, and finding out about this one, coincidentally, in time to sign up on the list of hopeful AND to be selected- well, that was pretty rad.

Everyone at the event was so kind and helpful and it warmed my heart to see all the special needs kids having such a good time. I highly recommend looking to see if there is a Challenge Air event near you. Its totally worth it.

http://www.challengeair.com/

Boys

2010-07-31T01:00:00.000-07:00

Tyler, Jacob and I went to the park today.

It was really beautiful outside and this park is the perfect mix of warm sunshine and shady spots.

Jacob was so happy and mellow. I was able to enjoy being out with him and I didn't have to exhaust myself trying to keep him out of mischief. :)

Jacob has been having a great time with the paper and tape today- not really clear on what the picture taped to his chest is.....but its important!

Tyler is worn out by his social life. Being a teenager is totally hard.

An insect discovery.......

Do all brothers adore each other this much??

Love you, my warriors.

~Mom

Look Closer

2010-07-28T23:46:00.000-07:00

All that creativity in one small place. Did you find the: 3D fishbowl? Car full of characters? House with a fireplace and a dog? A roll of tape request? The hanging bad guy? Buzz lightyear and other Spacemen?

And do you have any idea what is drawn on the postcard? He has drawn it before and I can't figure it out.

This is after clearing "Jacob's table" a few times today. We go through so much paper and tape.

Its cool.

Here's Lookin At You, Kid

2010-07-16T23:18:00.000-07:00

Jacob creating art at his very own craft table:

Not impressed with the view:

Checking himself out:

Stretching in his therapy bag:

Admiring his little friend:

Shame On Me

2010-07-15T19:08:00.000-07:00

I shouldn't blog when I have PMS.

I'm much happier and more level-headed today than I was a few days ago when I whined and proclaimed my-autism-is-worse-than-your-autism.

What sparked my pity party was the comment I received from an acquaintance at church: "You could change it if you had enough faith."

Who are you, lady who patted my shoulder consolingly and said those cutting words, to determine how much faith I have? You barely know me. And faith in what? Faith in medicine? Faith in therapy? Surely you don't mean faith in God, because only a clueless and inconsiderate person would tell a parent of a special needs child that it could all be cured if only they had faith! That really cut deep. And it isn't the first time an uninformed but well-meaning church person has said something like this.

I believe in miracles. I have witnessed miraculous things that have occurred from the pure faith of a human being. But I don't for one second believe that Heavenly Father is holding Jacob back from being a normal kid because he is testing me, and that a few more prayers could change everything.

If faith was all it took for Jacob to not have autism, I'd be the first person at church every Sunday and the last one to leave. I'd probably move in. I'd be on my knees in prayer more than I already am and I can guarantee my husband would be, too.

What I do know is that God is there to help me through it. Jacob is this way and since, thus far, I haven't been able to change it, I rely on Him for courage, for insight, for comfort. I have faith that He knows whats best for me and my son and wants us to be happy. I have faith in that.

Now about feeling sorry for myself and the lack of friends who are in the same place as me- feeling isolated in my particular situation gives me no right to begrudge those who have been blessed enough to find a cure. When I am thinking more clearly, I know without a doubt that these fortunate families tried very hard to find the answers and they deserve respect for that.

If I could find a cure for Jacob you can bet I'd be writing about it and sharing the news and trying to get the word out to other moms. I CAN learn from these stories, even if I don't find anything that works for my son, and I appreciate the dedication and time and love that other mothers put into caring for their autistic children. And it is not impossible that something I read could spark and idea or give me insight into making things better for Jacob. It isn't too late for him.

Cousins

2010-07-09T18:30:00.000-07:00

My Reality is Not Reperesented in The Media.

2010-07-08T22:57:00.000-07:00

It is extremely frustrating and disheartening when I go to do an online search for books, new releases that focus on autism, and every single book that comes up is the story of how a child was "cured."

They can't all be cured. They can't. And don't tell me that its all due to the hard work of a parent, or the miracle of Early Intervention. Maybe your kid just didn't have it as bad as my kid does!

Jacob began, at age 2, getting 30+ hours a week of one-on-one therapy. He was shuttled from Intensive Behavioral Intervention (IBI) to speech therapy to a specialized preschool. We tried the special, very specific diets, communicating through sign language and pictures, a variety of medications, and several different new-age ways to "bring him out of autism."

And here we are, years later, with a child who is as severely affected now as he was then. Different, yes, but still locked in his own little world that none of the rest of us can penetrate.

I want to be happy for all the mothers and fathers out there who have seen miracles. I do. But it hurts to read, time after time after time, about the 4 or so years it took a family to bring their child to normal. Why haven't my years of trials and pain and desperation paid off?

I love Jacob the way he is. I'm happy with the small advances he does make. I cheer him on and celebrate every little step forward. I love his quirks and unique behavior. He's a blessing to my life and the lives of everyone who really knows him. His story is no less important because we have not had the streotypical happy ending.

But where are the stories like mine? Lives of families who continue to search for answers. The children who are loved, appreciated, and enjoyed, and yet never fully redeemed from their private worlds? Why are all the stories so one-sided? There was a time when I devoured these success stories, looking for the secret that might unlock my sons mind. But the cures they tried haven't worked for us, and my bookshelves still sag with stories than seem unreal to me.

There have to be more kids like mine- who may never speak, may always struggle to be understood, and will always remain stuck on "the spectrum." I want to hear these stories. I need to know there are moms out there like me who pray and cry and beg for understanding.

2010-06-20T21:13:00.000-07:00

The past few weeks have been a big roller coaster of highs and lows. After the unexpected, abrupt, cold-turkey end of a medication that Jacob has been on for 3 years, we dealt with quite a lot of withdrawal symptoms including some intense, unrestrained aggression and a Grand Mal seizure.

I had quite a debate with myself, and with Chris, over whether or not we should keep him unmedicated or try one of the alternatives. He seemed so happy the first few days off of Moban, but his happiness was a kind of psychotic, manic happiness with extreme silliness and hysterical laughter. It was fun for a day or two, but quickly became rather upsetting and disturbing as his hyper-ness rapidly turned into being mean.

The medication that we chose, with the fewest side effects and lots of years of usage by children with autism, is one we have used in the past. We knew that it would work to calm him, decrease aggression, and help him sleep for more than a few hours a night. The problem was that despite all the good results we knew we'd see, this med also increases appetite. Jacob went from being a large-but-not-extreme to 60 lbs overweight in just a year and the last thing we want is a repeat of that.

You can see the dilemma. Due to tight control of his eating habits Jacob has lost in about 8 lbs in the last few months and we have been so thrilled with these results. But we know that this medication will change that soon enough.

I am preparing to deal with fights, tantrums, and all sorts of violence over us restricting his food intake. I have noticed his food-seeking has increased already in the past few days. I pray we can keep control over this without too much struggle. Fingers crossed.

One really, really, great thing that has happened in the past two weeks is that we have eliminated diapers! We thought we had some in a closet, but discovered they were all used up at a very inconvenient time. Chris and I decided right then to not buy any more. It was a big risk, with potentially messy results, but it has paid off! Jacob has had only a few accidents in 14 days, and he is doing amazing!

Its funny, and kind of lame, that it took so long for us to decide to do this. In my mind it was such a big deal to potty train him after our efforts to do so for several years. It had always been a difficult task and a most unpleasant one. But this try the timing was right and he was ready.

I haven't had a break from diapers since Tyler was born. 14 years and I was definitely ready to be done with that stage. I am so proud of Jacob and so thrilled to never buy diapers again.

And- BIG DEAL!- We are going on a vacation- the whole family- for the first time in several years. Travelling has always been such a struggle, but I think we are finally ready to take on the 16 hour drive and visit family. Yay!

2010-05-19T20:40:00.000-07:00

Jacob had a seizure last night.

He was lying next to me in my bed, after sneaking in at some early hour after I had fallen asleep. I didn't even realize he was there until I felt his body convulsing next to mine.

It took me a moment to figure out what was going on. By the time it was over only 45 seconds had passed. He didn't seem to wake up from the seizure, and slept peacefully by my side the rest of the night.

I, on the other hand, did not return to a peaceful slumber. I kept going over it again and again in my mind. Did that really just happen? What does it mean? Will it happen again if I fall back to sleep?

I did finally return to dreamland and, of course, my dreams were about a friend of mine who has epilepsy and the one time I witnessed her having a Grand Mal seizure.

She and I had gone to a movie together, and were on our way to find a late night meal, when all of the sudden my friend, who normally doesn't stop talking, went silent. We were right in the middle of discussing where to eat, one of our favorite activities, so I knew right away that something was going on with her. I looked over the passenger seat and saw her looking frozen, eyes glazed over and an odd expression on her face.

Not 2 seconds later she was convulsing next to me. I was driving, on a narrow one-way downtown street in an unfamiliar town, and didn't know what to do next. I pulled over into an alley, tried to hold her arms from flinging around and hurting herself, and we sat in that alley for the longest 10 minutes of my life.

When the seizure was over my friend was out of it. She was drooling, unable to speak, falling in and out of consciousness. I was scared. I remembered seeing a hospital directional sign earlier in the day, and through my own panicked state, and with a police car following us after going through a red light, I was able to find the way.

My friend stayed only semi-aware for several hours. She had dislocated her shoulder and bruised her face, but was ok other then those injuries. After spending most of the night with her, her dad showed up and released me to go back home to my kids.

It was a big deal. I hadn't experienced anything like it before, and hope to never again. My friend was ok, thank goodness, and I think it was more traumatic to me than it was for her- she has been epileptic her whole life and I was an uninformed novice.

Fast forward to last night. This one was even more scary to me. It was completely unexpected and it was my baby.

I woke up this morning and immediately got online to research the autism-seizure connection. I already know there is a higher risk with autistic kids to have seizures, and we even suspected he might be having febrile seizures several years ago when he was regressing in several areas. But the test Jacob went through were inconclusive, and we let that concern go.

Today I found many, many articles and blogs and websites about this exact thing. Puberty, changing hormones, injury- all these things can be a catalyst for the beginning of a seizure disorder.

And when I take into consideration the fact that Jacob seems to be regressing in a few areas (play, writing, level of aggression) I have to accept that this may be the beginning of a whole new set of concerns.

One positive in the past two weeks- one of the medications Jacob has been taking for several years was discontinued. If we are to begin administering a new medication specifically to fight seizures, I am relieved that at least one strong chemical is already gone from his body.

I have a lot to think about, tons more research to do. Prayers will be going up for Jacob continuously. I'd be grateful if you could add yours.

Love,
~Alaina

Wash, Rinse, Repeat

2010-05-17T18:52:00.000-07:00

The last post I wrote about Jacob having a terrible, aggressive episode happened about 3 weeks ago. I debated putting it here- although I want my friends and family to understand the most difficult times we face with Jacob, I also want to protect myself from criticism and showing the world what can happen behind closed doors. It can be both embarrassing and humbling to let people into my private moments. In the end it always makes me feel relief at getting it out of my system through writing it out, and helps me to understand what I need to do next.

I got many responses and words of advice from other parents, assuring me of their sympathy but encouraging me to continue with the method of restraint for a measured amount of time. If no progress was being made after this time frame expired, then would be the time to look for another alternative.

Good advice. I accepted that as my plan but have not had to use it again. Thank heavens.

This afternoon I got a call from the school today saying Jacob was being very aggressive with staff and students on the playground. His teacher asked if we had started a new medication. I had mentioned to her last week that we are looking for an alternative to his mood-disorder meds, which are being discontinued, and in my mind I assumed she was placing the blame for today's meltdown on this possible change instead of something that could be happening in the classroom or with a peer.

I didn't take it that seriously, assuming, again, that whatever drama they were witnessing couldn't be that big of a deal and that they were probably just overreacting to a relatively minor temper tantrum.

Tonight as Jacob was preparing for a bath and getting a messy diaper changed, he freaked out. Chris and I were both right there and, as far as we could tell, nothing out of the ordinary or unexpected was happening. But Jacob went from happy and compliant to hysterical and violent in a flash.

He was scratching us, biting, spitting, throwing everything his little hands could grab towards our heads, and using every part of his body to thrash around and inflict pain on his dad and I.

We tried to clam him for a minute before I said we needed to hold him down. There were no other options we could see and we had no debate- we each immediately took an arm and pulled him to his bedroom, struggling with his 165 lb frame of very determined and angry strength.

It took 40 minutes. We didn't have to hold quite as hard- not so tight that we worried about bruising him and us like last time- but he did wrangle an arm free to hit us and headbutted at every opportunity. It was, in my estimation, 10% easier than the time before.

Improvement. It may be coincidental and we won't know that until the next time, but I am going to keep optimistic for now. Hope- The buzz word of America and one I am holding onto tightly. Without hope for change and improvement I would be drowning.

I will be calling his teacher in the morning. She deserves my respect because, no matter what the circumstances that set him off, I know better than anyone that this kid of mine is a challenge. Tonight reminded me to keep advocating for my son while supporting those who are trying to help him.

Jacob has been perfectly pleasant for the last 2 hours. We layed together on his bed and hugged, face pressed to face, tears in both our eyes, and spoke our silent love for one another. I am so blessed with this unconditional love that helps me to quickly forget the pain and focus on the child that I have been given. His beauty, his open heart, his innocence- these qualities far outweigh everything else.

A word about Chris. In just 3 weeks will be celebrating our 14th anniversary. I am so lucky to have a husband, a partner in parenting, who is so quick to forgive and love. His physical strength, his patient manner, his genuine acceptance of everyone, faults and all- I couldn't ask for more of a man.

With tired body but swelling heart,

~Alaina

Tell Me It Will All Be OK

2010-05-15T21:25:00.000-07:00

Yesterday was one of the worst times we have had with Jacob. This blog post won't be eloquent or end happily- I am too emotional for that right now.

I am so torn up about what to do in future situations like this. I'm sick over it and it is all I can think about. Here's what happened:

Our evening routine is that Jacob takes a bath, takes his medicine, brushes his teeth, then has his vitamins. This has been working really well for us- he's actually been happy to get in the bath and do this routine after many years of struggling to get him bathed and clean.

So Stephanie, our caregiver who comes 5 afternoons a week to work with/play with/teach Jacob, was here, as usual. (This is the woman who's nose Jacob broke several months ago. Last week he bruised her ribs and she spent hours in the ER thinking they were broken.) She has made it clear that if Jacob is hurting her, we have to do what she has been trained to do when dealing with aggressive clients.

This woman has worked with several autistic/dd clients over the years, and was raised in a home with special needs foster children, and her experiences have helped us greatly. We have been trying to eliminate Jacob's violent behavior for years, and told her that at this point we were willing to try it her way. She also made it known that if Jacob continues to hurt her, and we aren't willing to restrain him with her, she can't work here anymore.

I completely understand this. She was being hurt, and who would stay at a job making $11 an hour, with no benefits, when you are being attacked? Not me. So we agreed, she taught us what to do, and we haven't had to use it until yesterday.

Ok, so at 7 pm he got out of the bath, perfectly happy and ready to do the rest of his bedtime routine.

Then something upset him- not totally sure what when any little thing can set him off- and he grabbed Stephanie's hair really hard and wouldn't let go. I came in and had to pry his hands loose, and in the 30 seconds that took his mood had completely changed and he's pissed. He grabbed the jar of vitamins and throws it at the wall, scratches me, and hit me. He claws her arm and my chest. I grab his arms from behind him so he can't hit me, because this is what Stephanie taught us to do. I have to manhandle him to his room, which is really hard when he's fighting and protesting and he weighs 165 lbs.

Since removing him from the situation didn't help, and he's super mad and continues hurting us and destroying things in his bedroom, we do the next step which is to have one of us on either side of him, holding his arms so he can't punch or hit, and pinning his legs down with ours. We were on the bed but typically, and ideally, this would be done against the wall where we have a bot more control over his movement.

He won't stop. He is so dang strong and he's using his whole body to head butt, bite, scratch, spit, etc. He manages several times to wrangle himself loose, attacking as fiercely as he can. Both of us are holding him and still we are both being hurt.

I am HATING it. It is AWFUL to be holding and restraining your baby. Awful. I'm crying, trying not to make it obvious because I don't know how that will play into the situation. Jacob's crying. Is he afraid? Mad? Hurt? Confused? All of these? I don't know. But the point is to not let him go until he can remain calm for 20 seconds.

We held him there for an hour.

An hour!!! An emotionally exhausting, physically draining, heart wrenching hour. About 30 minutes in, Chris came and took my place. I went out and got Jacbb his meds, knowing once they hit his system it would calm him down, and then we were 3 on one as I held his legs and they continued to hold his arms.

Chris is so visibly upset. I know he wants to make us stop, to make Stephanie leave and stop this torture, to hold Jacob until he's ok. I do, too. It really sucks.

During this time we are trying to talk to him, rub his back, turn his attention to a cartoon, but not releasing our grip. Nothing is working. I hate it. Tyler and Madison, while all this was happening, are in the hallway crying and telling us to stop and at one point yelling at us to leave him alone. It was so traumatic for all of us.

After an hour, and finally when he showed about 10 seconds of calmness, I say, "ok, that's good, Jacob, lay down with mommy." He immediately turns to me and holds me so tight and he's crying and I'm crying and it takes 10 minutes for him to be asleep, our arms so tight around each other, our faces wet with tears and pressed together.

Stephanie sits in the room with us during this time. She is as worn out and stressed about it as Chris and I, but there is also an air of satisfaction to her, since we did what she had been telling us we needed to. She's not gloating or anything, but she is obviously glad to have done this. The ultimate goal is that he'll realize he can't be so mean and aggressive, and if we do this a few times he will stop acting out so violently and it should take less and less time as we progress.

I'm am so confused as to what to do now. If Jacob continues to hurt us so often and violently we have no other choice than to have him live somewhere else. This is the worst thing I can imagine. I need him and he needs me, and to have him being taken care of by someone who doesn't love him kills me. I can't imagine not having his precious face at home with me everyday, hugging me when he gets off the bus, holding my hand when we walk together. I cherish these moments.

But how many noses will he break, how many bites and bruises and head butts until someone gets really hurt and we have no choice? There have been many times one of us has been unable to breathe as he weighs us down, or sure that our fingers are about to snap when he bends hands backwards.

Should we persist and use this restraining method to see if it starts to work? Can I handle doing it again? Is it really helping or is it drawing out the negative situation? I don't have any answers. Maybe there is another method that would be effective, but we feel like we have tried them all over the years. Nothing has been effective in eliminating his aggression.

Now I wonder if I can get some kind of medication to inject, like they do on TV to mental patients when they are going nuts, just to calm them down in the heat of the moment. It sounds like an easy solution, but how could I do that? Shoot up my child with strong, sedating medications? I'd almost rather be hurt by him than force that upon him young body.

If we don't try this current, difficult method, Stephanie won't work for us. She isn't willing to be hurt so much by a child who isn't even her own. I don't blame her for that. Yet she has made so many improvements in the time she has been here, we really value her help. Things have been progressing well, advances have been made, and most of it we contribute to her skills.

I am so afraid of doing the wrong thing. I love him so much. I hate to hold him down. I don't know what any other solutions are. I need help.

P.S. Thanks, Brooke! :)

Boy One

2010-04-23T22:09:00.000-07:00

inTelligent
loYal
athLetic
affEctionate
fRiendly

gEnuine
Responsible
faIthful
Compassionate

Easter Fun

2010-04-03T23:06:00.000-07:00

Birthday Fun

2010-03-25T11:56:00.000-07:00

Playing with Daddy.

New Toys! Wall-E was the biggest hit.

Party Time! And a new haircut for Spring!

Silver Falls for a picnic with mom, Tyler, Maddie and Stephanie.

Happy Birthday Jacob! What a great day we had!

2010-03-22T22:13:00.000-07:00

My baby turns nine this week.

How can it be that time has gone by so quickly that I am no longer in the lullaby, nursery rhyme, and piggyback years? Had I known that having all my kids within 4 years and done by age 24 was going to leave me still pining for a baby at 33, I think I'd have slowed down the process.

But there is no going back, and seeing how life has changed over the past several years, I don't know that I'd want to. So tomorrow I celebrate the birthday of my son with happiness and memories.

There are so many things that Jacob is able to do, things that were a big question mark for so long- Would he ever understand us? Will he speak? Can he have any type of a normal life? Can I? I spent years grieving and questioning and afraid of the future.

I didn't know that the years would pass and Jacob's autism would become so much a part of our family, so central to who we are that imagining life with a typical youngest child seems odd. Now the questions are different- Would we have been as close? Laugh this much? Love so unconditionally?

The blessings that have come into my life and to my family have so much to do with Jacob. His short life so far has influenced our personalities, our habits, our level of acceptance of people who are a little different.

His autism has brought people into our lives that have touched it for good. He brings smiles to our faces and joy to our hearts. There is no question that Jacob is a special spirit who was meant to be just like he is and to be with this family.

The hard times are heartbreaking and painful, but the simple joy of seeing him learn and progress greatly outweighs those tough times and makes them almost disappear.

Nine years, countless lessons, immeasurable love. Life with Jacob is a gift and a blessing that I am forever grateful for.

2010-02-18T23:18:00.000-08:00

Jacob broke a caregivers nose.

It has taken me a over a month to be able to put that out there. I am sick about it, stressed to the max, and have a sinking feeling this is only the first time. I don't know what the outcome of the situation will be, but I'm hopeful it will be easily resolved and that S will heal. I've pretty much had a rock in my stomach over it since it happened on New Years Eve.

Then today, after an intense series of events, Madison, Jacob, Mercy the Mastiff, and I all got to ride home in police cars. It involves an open front door, Jacob and Mercy both discovering this, and Madison trying to be the hero but instead causing me to think she is lost or dead somewhere. The police (who I did not call but who were, coincidentally, doing some investigative work not far away and I walked right into them) did a very quick and thorough job of reuniting us. They were all very nice and calm and I didn't feel embarrassed to be crying and having a panic attack as I imagined all the bad guys out there preying on my little girl. I left super impressed with the local Police and reassured of how quick they are to act in an emergency.

I also got some information from one of the cops about registering Jacob to be unidentified in case of emergency. If he were to go missing for any reason, his information would be easily accessed and prepare responders for how to communicate with him. This officer who told me about this has an autistic child herself, and was one of the creators of this program locally.

A few good things came out of the adventure this morning- my renewed faith in Law Enforcement, and a really smart resource to help keep Jacob safe in the future. And, seriously, through all my tears and all the walking and standing around we did today, Jacob was with me every step of the way and he was AMAZING. I'm shouting it. AMAZING!! He was like a kid with high functioing autism for a while. He listened, understood what I needed from him, stayed calm and happy and made the whole ordeal easy when it could have been a complete nightmare of chasing him down as well as his sister.

Such a big blessing right when it was needed. It seems to work out that way often. What a boost to my faith that Heaven is looking down and knows me.

2010-01-11T17:27:00.000-08:00

I have always been more of an observer than a participant. I'm the person to whom, in a group of people, someone more outgoing will always comment, "You're so quiet? Aren't you having fun?" To which I reply, "Yeah! I'm fine," while seeing the doubt in their eyes as inside I'm cursing that person for drawing attention to me.

In a small group setting, I thrive. Personal, intimate interaction is my comfort zone. A few close friends, or even prospective friends, and I open up for conversation. Those who have known me for any amount of time know this about me and don't expect any more of me. I try to be more outgoing, really, I do, but my comfort level is just part of who I am and after nearly 34 years and ample opportunity to change, well, it ain't gonna happen.

So, being the observer and people watcher that I am, it took some time to adjust to all the attention that comes with having a child who draws a lot of eyes to himself. At first, when Jacob was 2 two and three, I'd reassure myself that he wasn't so obviously different, and that most people probably didn't recognize his autistic behaviors as anything more than the terrible twos. As he has gotten older, larger, louder, and further behind his peers, the obvious can't be hidden. I am acutely aware of all the stares, conversations behind hands, and open-mouthed gawking that happens on a daily basis.

For a while, say ages 3-5, it made me self-conscious, a little embarrassed, and very uncomfortable to be so exposed in such an awkward way. I'd glare back, make under-my-breath comments about rude, starring people, and generally avoided taking Jacob anywhere that included strangers and typical kids. But I came to accept that this is a part of life with an autistic child, and slowly retrained myself to react differently.

It took some time and trial and error but these days, if you were to run across my son and I in public, you'd see a smiling mom who doesn't mind the unaware and uninformed wondering what is happening with this curious child. I might smile at you or roll my eyes at my own situation as I wrangle him to the car. Say simply, "He's autistic," when I see you wondering why Jacob is so different and difficult. Or, very commonly, I'll laugh and apologize as he tightly hugs a complete stranger, hoping you will see he is harmless and not so scary.

These days when I am out without Jacob and I see a parent in a similar situation to mine, my reaction is one that I wished had been given to me back when it was so hard to be seen as different. I always smile, make eye contact. greet the child regardless of how aware the child is and, if opportunity presents itself, tell the exhausted and overly-protective parent that I have a child like theirs. I hope this makes them feel less alone. I want this to say that I see them, see their efforts, and know how hard it can be to raise a special needs child.

I hope by this change in my reaction, that I am teaching people that being different is OK, that being the quiet one in a group of talkers, or the sweat pant-clad mom dragging a tantruming kid around in a store full of supermodels doesn't make me any less.

I am still trying to think of a witty comeback to the "aren't you having fun?" comment because, yes, I am.

2010-01-11T16:43:00.000-08:00

I have always been more of an observer than a participant. I'm the person to whom, in a group of people, someone more outgoing will always comment, "You're so quiet? Aren't you having fun?" To which I reply, "Yeah! I'm fine," but inside I'm cursing that person for drawing attention to me.

In a small group setting I thrive. Personal, intimate interaction is my comfort zone. A few close friends, or even prospective friends, and I open up for conversation. Those who have known me for any amount of time know this about me and don't expect any more of me. I try to be more outgoing, really, I do, but my comfort level is just part of who I am and after nearly 34 years and ample opportunity to change, well, it ain't gonna happen.

So, being the observer and people watcher that I am, it took some time to adjust to all the attention that comes with having a child who draws a lot of eyes to himself. At first, when Jacob was 2 two and three, I'd reassure myself that he wasn't so obviously different, and that most people probably didn't recognize his autistic behaviors as anything more than the terrible twos. As he has gotten older, larger, louder, and further behind his peers, the obvious can't be hidden. I am acutely aware of all the stares, conversations behind hands, and open-mouthed gawking that happens on a daily basis.

For a while, say ages 3-5, it made me self-conscious, a little embarrassed, and very uncomfortable to be so exposed in such an awkward way. I'd glare back, make under-my-breath comments about rude, starring people, and generally avoided taking Jacob anywhere that included strangers and typical kids. But I came to accept that this is a part of life with an autistic child, and slowly retrained myself to react differently.

It took some time and trial and error but these days, if you were to run across my son and I in public, you'd see a smiling mom who doesn't mind the unaware and uninformed wondering what is happening with this curious child. I might smile at you or roll my eyes at my own situation as I wrangle him to the car. Say simply, "He's autistic," when I see you wondering why Jacob is so different and difficult. Or, very commonly, I'll laugh and apologize as he tightly hugs a complete stranger, hoping you will see he is harmless and not so scary.

These days when I am out without Jacob and I see a parent in a similar situation to mine, my reaction is one that I wished had been given to me back when it was so hard to be seen as different. I always smile, make eye contact. greet the child regardless of how aware the child is and, if opportunity presents itself, tell the exhausted and overly-protective parent that I have a child like theirs. I hope this makes them feel less alone. I want this to say that I see them, see their efforts, and know how hard it can be to raise a special needs child.

I hope by this change in my reaction, that I am teaching people that being different is OK, that being the quiet one in a group of talkers, or the sweat pant-clad mom dragging a tantruming kid around in a store full of supermodels doesn't make me any less.

I am still trying to think of a witty comeback to the "aren't you having fun?" comment because, yes, I am.

Can You Hear Me Now?

2010-01-03T20:45:00.000-08:00

Sometimes when I tell people Jacob is non-verbal, they mistakenly assume he's silent. In reality, there's nothing further from the truth. He has never been a quiet boy.

In the past he's had several sounds that he uses to "speak" with us. First, when he was about 2, he'd growl. That was fun. Next, he said "ma ma ma" for everything. At 4 years old he began with the "eh-eh-eh" sound that he'd use in a conversational tone. That one lasted a few years. The past year or so the sounds of choice were "bo", Ahh-ahh", "na-na".

Right now, and for the past 2 months, he's got a constant, super-high pitched squeal that reminds us of a dolphin. Doesn't matter what he is trying to say or how close you are to him, its a top-of-the-lungs ear piercing, animal sounding shriek.

We all deal with headaches because of it, and no matter how many times we remind to him "speak quietly" or to have a "soft voice", he's just not getting it. We all pray this is a short-lived phase.

Even though it is unpleasant and makes you want to cover your head with a pillow, the fact that he tries continually to communicate with us is a wonderful thing. He wants to talk. He thinks he is talking. And that is something we have to encourage. So we put up with the variety of noises and always talk to him, hoping he catches on.

There has been some progress in his speech. He regularly says these words: out, go, poop, mom, hi, cheese, Jay, kitty, Doo, Bob, ouch, hat, no, yeah. He doesn't say them in a typical tone, and though they are unmistakable to those of us who see him everyday, to a stranger it would be hard to decipher.

There have been several times lately where Jacob has said a word once, clearly and in context, and then we never hear it again. His list so far: soap, go away, help, stop it, don't, Jenny, mine, pop, kiss. Even hearing them clearly and knowing the relevance to what is going on around him, I still question if it wasn't my ears palying tricks on me.

It wasn't so long ago that I was holding my breath waiting for him to say something, anything. Now it is happening, and it is a beautiful thing. I listen to him more carefully then I ever have, hoping to catch a new word, to see my little boy progressing in a way I never thought he would.

Jacob has along way to go to be able to communicate with people effectively. His progress to this point puts him on par with a 2 year old- seven years behind schedule. He may never be able to hold a conversation. But to hear him say "hi Mom!" every time I walk in the door still makes my heart soar. We'll continue in or efforts to help him talk, and he'll continue to amaze us when he does.

I love that kid.

Christmas At My House

2009-12-29T22:26:00.000-08:00

What a lovely Christmas we had! We went a little crazy from all the joy.

Tyler- who as of yesterday was officially a teenager- got some pretty cool stuff to make his bedroom a fun hangout.

Chris was lucky enough to get the recliner he has long been pining for.

Madison got the tiniest gifts that made the biggest impact.

Jacob loved every minute of it, and his smiling face made the day beautiful for us all.

We love the Lord, we count our blessings, and we hope yours was a wonderful day, too.

2009-12-03T15:53:00.000-08:00

2009-11-22T21:01:00.000-08:00

Jacob started crying yesterday afternoon. Not tantruming, not throwing a fit. Crying. Bawling, really. It was the saddest thing to witness. He was so frustrated that he couldn't make me understand what he was trying so hard to communicate, and he just broke down into discouraged, lonely tears.

My heart cracked apart a little so see this from my baby. He tries so hard, so hard, to talk to us and help us understand what his little head is thinking. I cant imagine the struggle it would be to never really speak to anyone and to have so much you want to express.

I wonder, if I couldn't write......read.....photograph.......let alone speak, how would I communicate? What else is there?

Jacob has very few outlets for connection to others. His detailed, miniature paper-doll characters, scotch tape costumes, drawings pinned to the wall, these are the only indications Jacob gives of what he thinks about, what he likes, and how much of the outside world is getting through to him.

Even though he wept big dripping tears that pulled my heartstrings, there is some relief in the situation. He still wants to talk to us, he is still trying, he is not so far into his own head that he doesn't still want personal relationships with us. And that is really great to be reassued of.

Hello, Mr. Crab

2009-11-02T21:13:00.000-08:00

About a month ago I painted Jacob's bedroom in an "under the sea" theme. He loves Spongebob, mermaids, and seashells, so I decided to make it generic enough to fit all these interests and whatever new ones he develops.

I painted the sky the color of a lovely sunny, cloudless day and put a great big sun shining in one corner. The water is a nice mix of blue and green with seaweed and other sea plants growing up from the ocean floor. There is a family of fish, a friendly, smiling whale, a cute little crab, two groups of jellyfish, and a even menacing shark hiding behind the door and scaring off looters from the sunken treasure chest. A few boats float on the water's surface, and a lovely tropical island is off in the horizon.

Chris and the big kids gave me lots of compliments on the project, and everyone who has been over in the past few weeks has either loved it or kindly pretended to. I was so proud of my creation, all done freehand and my first attempt at large-scale art.

I intentionally made it look cartoon-ish, knowing that would be easier to design and paint, and more familiar to Jacob than a realistic under water scene. The fact that it eliminates the need for additional decor is a huge bonus, since nothing that exists in Jacob's room is safe from being destroyed and several items hung on his walls have been a total waste of money. In fact, the less there is in the bedroom the better it looks and this makes it much easier to keep the space clean and clutter free, while still being fun and creative.

Then comes the unexpected complication: Jacob is a little freaked out by the whole thing. I really did not anticipate that he would feel anything but pleasure at having his own little watery hangout where he could play with his imaginary ocean-dwelling friends. What I wasn't considering is how "real" he takes his playmates, Spongebob, Patrick, and Ariel to be. Consequently, he seems to think that the characters I lovingly painted on his walls are real, too.

I will be sitting with him on his bed when he'll quickly look up and towards the crab, as if to catch it moving. He does this over and over, and it kinda creeps me out and makes me think I am going to catch the drawings moving as well. Like the little pinchers will be slightly askew or he will have taken a sideways step. Jacob won't even look the shark in the eyes. The shark is a little mean looking, and that is why I put him behind the door. The fish don't seem to bug him at all, but then they aren't looking at you and have silly smiles.

The progress we had made in getting him to sleep in his own bedroom instead of right in the middle of Chris and I has regressed a bit. He's OK as long as someone is in there with him but, all alone with creatures watching him from every angle, it is entirely possible he sees the cartoons on his walls to be unblinking, menacing, mocking strangers.

I am definitely not ready to paint over my personal masterpiece, so my tactic thus far has been to "greet" the shark and crab every time I enter the room. I'll say "Hello, Mr. Crab. Hello, Mr. Shark" as I touch them and smile. I am hoping as Jacob sees me being all friendly with them, he'll realize they are not a threat and begin to accept them as new buddies. I'm crossing my fingers.

Deadline

2009-10-06T14:02:00.000-07:00

I have been a week without a computer at home. I have known for a long time that I depend on my Internet access for more that fifty percent of my communication. Emails and message board posts are more common to me than phone calls and face-to-face visits. I have become more dependant on text messaging recently, and the thought that I may be able to avoid phone conversations altogether is hugely appealing to me.

But here I am, 2 feet away from a stranger (which is something I am never comfortable with) and in clear view of anybody who wants to look over my shoulder, making an effort to update my family, friends, and other loyal followers as to the current situation of life in the Jones household.

The computer: broken. It has withstood so much in its short life- missing keys, loose and jiggly battery, liquid spills on the keyboard- but the weight of Jacob, all 155 pounds of him happily stomping on the keys and mouse pad, well, that did her in. It was a night of tears when I came home to see Jacob dancing on my valuable friends, my most reliable connection to the world outside my double-padlocked and every-possible-exit-alarmed fortress I call home.

I really shouldn't have been so surprised. So many of the things a normal family depends on every day for sanity, privacy, safety have been victims of my son. Our refrigerator, brand new and shiny clean when we moved into this house only 18 months ago, has had it's door slammed open and closed one too many times, and now we cannot shut it without it popping open of it's own accord seconds later. Every time I walk into the kitchen I have to re-shut it, praying that it hasn't been ajar long enough to ruin the food inside. The freezer is even worse. That door doesn't close at all, and we have to prop a chair against it all day long to keep the whole thing from defrosting over and over. This isn't fail proof- kids don't always remember to replace the heavy chair and our big dogs push it out of the way as they try to steal remnants from the garbage can so we have lost more food from this than I care to think about. Chris has replaced and repaired hinges and small parts so many times that they are no longer fixable.

Then there is my bedroom door. It seems Jacob cannot go in and out of my room without slamming it as hard as he possibly can, ripping the hinges out of the wall and even out of the door themselves. This is another endless project that Chris has to complete, and he does, often. The last event, roughly a month ago, caused the entire door frame to bust and despite buying the longest nails Chris could find at the hardware store hoping that this might hold the door into place for just a little longer, we now have no door to close up our bedroom and have the privacy that two tired parents really, really need. Replacing it would restore some sanity but since this has happened before and undoubtedly will happen again, it feels like a pointless exercise to go through the time, expense, and frustration repeatedly. So we live with no private time and deal with it.

There are so many little, less significant things that are systematically destroyed on a daily basis. Really, I have had to remove myself from caring about anything that I buy or am given, knowing that it's time in my possession may be quickly extinguished. No one could call me materialistic at this point in my life. Too bad I quite enjoy my trinkets and treasures, and mourn the times when a small item could make me smile.

Am I being dumb? My son is autistic and not emerging. Daily living with him is getting harder instead of easier, and the thought of sending him away looms over my head sneaks it's way into everyday. He has to be very unhealthy- no child at his size could be as fit. But how to remedy this? I have no idea but the fact is he just keep getting larger and stronger and now outweighs most everyone who has previously been able to care for him. This is scary to think about. How much longer can we go on like this? How do parents ever decide it is time to find alternative living situations for their children? How could I ever let anyone else put my baby to bed? He needs me to cuddle him and rub his back and tell him that I love him. I need this just as much as he does. Its our connection and the resolution to whatever kind of harrowing, tiring, destruction-filled day it that has preceded it.

I have fifteen minutes. My time online at the library is scheduled and limited to 60 minutes a day. I haven't even checked my email yet. I don't want to go up the hill back to my house and still feel disconnected from the world outside. My neighbor to the left of me, also approaching his one hour limit, seems to have some kind of cold or virus, and I'm debating if it is worth it to be here in such close proximity when I could potentially take home germs to the rest of my family.

I wish I had access to my photos. I'd love to show you all how great Jacob's room looks since I painted it with an under-the-sea theme. Or post all the back-to-school pics of my children to show you how much they are growing. But this will have to do for now.

Catch me if you can-

AJ

Angel Baby

2009-09-13T23:01:00.000-07:00

It has been a heartbreaking week.

My younger brother, Thomas and his wife, Adrienne had their first baby late last Saturday, September 5th. After 7 short days with the family who loves her, Cali Koryn left us to return to Heaven.

My niece, Cali was born with Hypoplastic Left Heart Syndrome (HLHS) and had to fight for life every moment she was here on earth. The days she spent at Primary Children's Hospital were filled with moments of hope and love. Her little body went through more in that short time than most humans ever have to experience.

Cali had perfect soft hair, a button nose, tiny hands and feet, and beautiful skin that hid the heart that failed her. She looked up her daddy with those misty dark eyes that newborns have and the love exchanged in that brief moment is irreplaceable. Myself and several other family members were able to hold her, touch her soft skin, and tell her we love her before she was gone.

Her parents have been an incredible example of faith and courage. They love their angel Cali so deeply, and it is obvious on their faces. I will never forget the strength and hope they shared through this difficult trial. Truly a lovely and amazing couple.

Please keep us in your thoughts and prayers, especially Thomas and Adrienne as they try to figure out the next steps in life. Pray for peace and calmness as they navigate through the pain and grief. Thank you for the kindness and love shown to my family already. It has been a blessing and we have felt the prayers.

School Can't Come Soon Enough

2009-09-01T22:47:00.000-07:00

Six days till school starts. I cannot wait. I am feeling like an indentured servant to the giant wrecking ball that is Jacob. We both really need a break from each other and both welcome the structure that school provides.

The awesome special ordered lock that is on our front door, the one we labored over choosing waited and waited for? Its broken. So instead of the convienence that it was providing by keeping Jacob securely inside and safe has now switched to the inconvienence of having no way to get out the front door because it is permanently locked from the inside. We can still open it from the outside, but it has gotten a little uncomfortable to yell to visitors from the window, "just open it! I can't open it from in here!" It seems like the logical solution would be to remove the lock and replace it with a regular doornob, but that makes life equally hard since we have to patrol it 24/7 and we may as well keep this difficulty instead of trading it for and equally annoying new one.

So. For the time being we must exit through the garage. After two weeks of trying to squeeze through the boxes and clutter that mysteriously collects there I spent the day organizing the garage so that there is a stumble-free path to and from the door. That was ok until a couple days ago when Jacob finally figured out how to work the garage door for himself. Even if we lock it with the (patheticly inadequate) child-proof feature he can escape whenever he wants to. I can hear it opening from anywhere in the house (is there ANY insulation??) and run to catch him before he is too far down the street. However, he's so fast, and I'm so not fast, that he has been several houses away knocking on doors and harrassing pets before I catch up.

Whew. Just thinking about it causes me to stress out and loose my breath.

I have respite workers scheduled to come everyday this week. It gives me somewhat of a break to tidy the house and run errands, but it also means one more person I'm concerned about when Jacob goes on the rampage. The lovely young ladies who help me out weigh less than my heavyweight son. He can sit on them and they really can't get up. I've see it happen several times and its not pretty.

The time they spend playing with him and following him around doing damage control is worth it. At least it is to me- they may tell a different story. At least they are getting paid for the abuse whereas I have to take it all day and then snuggle him to sleep which can be emotionally chaotic, switching from being on the defensive to cuddling him to his peaceful slumber where he recharges for another day of being the little dictator.

I've said it before and I'll say it again- It isn't all bad. Life can be rather humorous at the Jones house. You never know what to expect from day to day, and it never gets boring. The way Jacob runs to hug me yelling, "Ma!! Ma!!" whenever I walk in the door, even if I was just outside grabbing the mail, well, that never gets old. And when he kisses me up and down the arm, on both cheeks, and my chin he charms me into overlooking the negative stuff for a while.

He's mine, and I take the good with the bad. But September 9th is going to be AWESOME.

Safe In My Arms

2009-08-12T22:30:00.000-07:00

After a day with lots of tears and emotional outbursts, I discovered what was bothering Jacob.

Poor kid has a painful loose tooth. I can only imagine how scary it is for him, not knowing that losing teeth is a normal thing, or remembering that this has happened to him before. And, unlike my other kids did, he doesn't even have the anticipation of a cash reward from the Tooth Fairy to get him through it. Its really sad to see him so stressed out and worried about what is going on in his mouth.

That is one of the things I find most troubling about life with my non-verbal little boy. He can't tell me what hurts, and if its not visibly obvious, it is east to attribute his behavior to medications or tiredness or changes in routine when all along his tummy/head/body in general is aching.

I can't count the times that he has seemed a little "off" all day, but not so much that I am worried, and all of the sudden he's puking everywhere. A little warning in times like that would be awesome.

This fear of his inability to communicate to me what is bothering him carries over to every part of his life. Like a few years back when I couldn't get him to go into the school for months and later realized (mommy intuition) that he was afraid of something/someone. What a difference it would have made if he had been able to tell me he was scared. I'll always feel terribly guilty for all the time I spent trying to force/bribe/trick him back to school before I was aware that my sweet little guy was literally shaking in fear.

I hate to know that this could continue for his whole life. Chances are that he will be taken advantage of in some way by caretakers, teachers, or peers. Its a horrible thought, but I have seen enough and heard enough stories to know its reality. People can be cruel. Here in my town a few years ago there was an aid in a local middle school arrested for molesting kids like Jacob, and I know he's not the only person to recognize an easy victim when he sees one.

How do I protect him? I trust his safety and education to so many people that, really, I know very little about no matter how innocent they seem. And with how difficult it is for me sometimes as his mother who loves and adores him to take care of his needs and deal with negative behavior, well, it frightens me to think of how someone who doesn't love him or care about his happiness like I do might treat him in a stressful situation.

I am learning more and more to trust my instincts to tell me when to welcome someone good or avoid someone with ill intentions. All I can do is pray for kindness and understanding from those who are involved in his life. Pray consistently for inspiration as to who I can trust to look after him and keep him safe.

Everyday when he returns to us, his family who will love him through everything, I look into his eyes and hope I still see that shining light that tells me he is doing OK, that all is still well in his world.

An no matter how big he gets I'll always have room for him on my lap and in my arms. Always.

All We Need Is Love

2009-08-01T22:48:00.000-07:00

Jacob and I were picking up his toys this evening, when out of the blue he kicked me hard in the ribs. I immediately walked away and had a little cry in the bathroom. First because it hurt, second because times like that are the worst for a parent. When we are lovingly giving of ourselves to play with and teach our child and- WHAM!- a completely unexpected attack. It feels so personal to me when I think we are getting along and enjoying being together and he obviously thinks otherwise, hence, a kick in the gut or a punch in the chest.

Jacob's personality changes like a switch going off. He's riding a pendulum, swinging from two opposites- the calm, creative, loving and silly kid we all adore, and the mean, aggressive, unforgiving, tireless tyrant he is the other half of the time. There is very little middle ground. So having Jacob pleasantly picking up blocks one second and lashing out the next is a regular thing.

My child, only 8 years old and acts so much younger, scares me. I am still heavier and taller an he is, but for how long? Madison and he are the same height, but he outweighs her by 60lbs. She, as you can imagine, can be quite terrified of him. She has taken to wailing out in fear when he is coming towards her, no matter if he just wants a high-five or a hug. Its no way to live, being fearful and on constant guard from attack.

My emotions swing right along that same pendulum. The fear and helplessness of being responsible for this child who can challenge adults with his monstrous body, who has hurt me, intentionally or not, many times. I worry when walking down the stairs next to him that he will push me. I tense up when he is coming towards me, not knowing if it is for a hug or to push me over. I can honestly say that Jacob intimidates me.

The on the other side of the emotional wheel is where I'm balancing, trying not to slide too much towards seeing the glass half empty. Keeping my chin up. Looking on the bright side. Being resilient. It can be really tough some days, trying to keep everything in perspective and positive. I'm not great at it, but I try. I try.

Why? Because I see happiness shining in his eyes and kiss that chubby face and feel such affection and love towards my son. I know this path we are on together may only get harder, and is definetely the rockiest path I've ever been down. All that keeps me going is love. It is what I fall back on everytime the road gets too rocky- Chris and the kindness and tenderness he shows me, Tyler and the way he hugs me tight and tells me I'm great, Madison's creative, teasing way of making it know that she loves me, and Jacob bringing me flowers from the yard or kissing me up and down my arms.

My saving grace in the hardest times is the love I have for my family and the love my God shows to me. It carries me.

2009-06-18T22:27:00.000-07:00

My super cool and funny friend, Kristie, has this list of tricks she uses to get her kids to help her clean the house. It is such a great list with truly brilliant ideas that I just have to share it here. I know that a lot of my friends and family could benefit from these tips as I have.

The Lucky Jar - The kids just started new charts today. If the kids accomplish all of their jobs for a given day they get to pick something out of the Lucky Jar. But only on Fridays. If they do every job every day they get to pick out of the lucky jar five times. The lucky jar has slips of paper that give them special snacks, special time with mom or dad, stay up late minutes or 'skip a job' passes for the coming week. The kids can hardly wait.

Bomb in the Kitchen – Set the oven timer for x amount of minutes. Work hard to get the kitchen cleaned and out of the room before the bomb goes off... otherwise you need to make a dramatic death scene on the kitchen floor. Make sure to add more time than you think. The best part of this game is standing at the edge of the clean kitchen and thinking of things you need to ‘run in’ and do without dying.

Train Cleaning – This is J’s favorite and mine too. I am the engine. The kids line up behind me. I point to something on the floor and the one right behind me gets out of line to put it away and then hops to the back of the line again. I try to go so fast that I don’t have any ‘cars’ behind me. We choo-choo through the house looking for whatever needs to be put away.

Set the timer’ Cleaning – This is when all of us clean together and it usually involves a few rooms... like our family room, entry and kitchen which are all connected. We set the timer for 20 minutes and work until the buzzer goes off. If I see the kids distracted or not working I add a minute. The kids love knowing exactly when they will be done with the job.

Sticky note choices – when the kids come home from school, (or on Saturday mornings) the kitchen island is covered in sticky notes. One job is on each... some easy, some hard. Starting with the youngest they pick their jobs, one at a time. My kids love this one because they are different every day depending on what I need done. I always try to add fun and silly ones, like “tell your mom she’s great” because of course I always need words of affirmation, or “play outside with M” which actually is a big help to me but they think they are lucking out.

Countdown Cleaning – “Kids, I need everyone to pick up 10 things in the ____ room.” Once done they come give me a high five. Then I tell them to pick up 9 things. Then 8... then 7... etc. They start giggling when they are down to the end and they have to keep running to give me five between every one.

Movie Pause Cleaning – Put on a movie for the kids... who doesn’t love this already? Explain that whenever you push pause on the movie they have to quickly put 10 things away and then run and jump back on the couch so the movie can start again.

Erase a Job – Have a list of jobs ready for each kid. Tell them that if they clean the first thing good enough that it passes ‘mom inspection’ then they can cross off the last job on the list... and so on.

5 things away before Snack – J is notorious for asking for snacks 10 times a day. Each time she asks I say “Put away five things and then you can have a snack.”

These are just a few- but it really does help to make them more excited to clean- heck, it makes me more excited to clean!

Thanks, Kristie!!

2009-06-10T22:14:00.000-07:00

I said goodbye to Tyler and Madison last night. They are gone to Utah for the next two months. Madison happily, Tyler not so much.

My mom and dad live there, and offered to entertain (and train in the ways of respecting their parents) my two big kids. Tyler is feeling like it is a punishment. His life revolves around his friends right now, and a summer so far away feels like torture to him. We had many, many drawn out, dramatic discussion about it where he deemed me "the strictest mom ever" and I decided he whines too much for a 12 year old.

Madison is eager to be a Mother's Helper to my cousin and her sweet little girls, and she is sure she'll be able to convince me to let her bring home a bunny at the end of the summer. (A friend of mine in Utah has a Rabbitry (I'm pretty sure that is a real word although spell check is telling me otherwise).) (Do I need two parenthesis here?? I cannot figure out how to punctuate that sentence.) There's little to no possibility of a bunny, cute and fluffy as they may be, coming back home with her, however, which I have told her every. single. time. she has asked, but, stubborn little thing that she is, she is holding out for a change of heart.

I hope and pray they realize and come to appreciate how lucky they are to have this opportunity to get to know family better and to have boatloads of fun in the process. They get to have a summer full of swimming, hiking, music lessons, and cousins. I'll bet they come back with killer tans and lots of adventurous stories to tell. I'd totally go myself if that were an option.

But, alas, I get to stay here in Oregon, which really isn't so bad but would be ten times better if I had some cash to finance a few adventures of my own. Instead it will be Jacob and I hanging out here at home, day after endless day, getting really tired of each other. I will have some reprieve in the the form of respite care, which I am currently interviewing candidates for and stressing over. The help is great, but it still doesn't give me any cash to go out and have some fun, so you can look forward to lots and lots of pictures, since photography is basically a free pastime in this digital age.

As for the respite stuff- I put an ad on Craigslist a few days ago and have had so many applicants that I am having difficulty keeping them straight. Last time I advertised for this I didn't get more than two interested parties. It's a sure sign of the times and the poor economy when everybody and their dog applies for a not-so-high paying job with a ton of responsibility and lots of mess like this one. But, oh, to have options for hiring makes me very pleased and grateful.

I have an interview tomorrow at my local police department for the job of Domestic Violence Advocate. I actually went in this morning thinking it was interview day and felt like a big dummy when they told me I was 24 hours early for the appointment. I hope they forgot what I was wearing because I had specifically planned my wardrobe and I'll be arriving in the same getup for the actual interview, which they said could last over and hour so I'm having visions of polygraph tests and interrogation. Do they do that to job candidates? I hope not cause I live with a permanent guilt complex and I'd surely fail them both just because of that.

Here's something exciting- after months and months of proposals and negotiations we have finally been approved for funding to install a big, colorful play structure in the backyard for Jacob. This State-run program Jacob is a part of is a maze of red tape, but the result is going to be awesome. Expect a lot of photos of Jacob sliding, Jacob swinging, Jacob climbing, and probably all will be blurry.

I'm sporting a few new, large, dark bite marks on my arms. Jacob is very aware that biting me is naughty and it hurts, but is also aware that it gets a big reaction like me squealing or crying or yelping. If I could remain calm when this happens the amount of occurrences might decrease, but, dang it, it really hurts and I can't help it. He hasn't bitten anyone else to the extent that he has bitten me, thank goodness. I'm kinda paranoid about showing up to my interview looking like I'm a victim myself which, really, I am. Knowing myself well, I'll find a way to bring it up within the first few minutes and hopefully dispel any weirdness and doubts that may come from talking with bruised woman (me) looking to be hired to prevent this kind of stuff.

Chris and I are thrilled to be starting church in a brand spankin' new chapel this coming Sunday. It is a beautiful, large new building and is only 3 minutes away from our home. I'm anxious to be the first person to open a new hymn book and hear it crack, and to smell the newness of everything. I can't wait to see the color scheme they chose, and I'm crossing my fingers that the folding chairs in the classrooms are padded. Funny how much I am looking forward to this.

My goal this summer is to get to bed earlier than 3 am every night, and since it is now after 11pm, I'm going to take some melatonin and try my darnedest to fall asleep before midnight. I doubt it is going to happen- my hard wiring can't be changed that quickly- but here I go to give it my best shot. Goodnight, friends.

Miss Me??

2009-05-31T00:54:00.001-07:00

I know, I know. Its been too long with no word of how things are going in the Jones household. Honestly, lately, blogging has seemed like a mountain I have no energy to climb. I think about it every day and feel guilty for having temporarily lost the desire to express myself through writing and I have, more than once, written "BLOG!!" in huge letters down my forearm to encourage action just to shower it away, and have started more than a few new posts just to save them as halfway completed drafts. Its kinda feeling like a four letter word, blog.

But life keeps happening anyway, even Internet-worthy things, and so for my first attempt at blogging in over a month I am going to give a simple update on Jacob, and make promise not to leave you hanging for so long again.

Here ya go:

Jacob said "hi mom." Twice. His first two-word combo! And to think its been 8+ years coming. The whole family was in the car together and we were all there to witness this milestone. Very cool.

Yesterday he carried my laptop, and the printer (which is rather large and has several parts) down the stairs to the kitchen, plugged them both in and connected them together and then called for me ("Ma!! Ma!!") to come print him pics of Scooby Doo ("Doo"). I have been doing Google image searches with him, just sitting together looking at the pictures on the monitor, and he loves it. After looking through ten or so pages of thumbnail sized pictures, we'll print one off for him to keep. Its cute that he thinks the proper place to do this is at the kitchen table since that happens to be where we have been each time but I'm having nightmares of my computer slipping out of his arms and crashing down the stairs to its death.

Today he opened a box of brownie mix and dumped it in a baking dish and put it in the oven. No liquid or eggs, just the dry, powdery mix. Then he kept flipping on the oven light, checking to see if it was "cooked." Madison made them when he wasn't paying attention- we don't need more of an excuse for brownies- but now I'm realizing that wasn't such a good idea since it may lead to him thinking he really can use the oven to make a treat whenever he feels like it. Oops.

He has been pooping in the backyard. He'll go outside to play, then come in a little later with no diaper/undies on and take my hand to lead me outside to proudly show me his poo. As if two dogs doing their business on my lawn wasn't enough. *eyeroll*

Instead of taking off his shirts the regular way, he has been cutting them off himself- right down the front center. So far we have had to toss out 7 sliced Ts.

Jacob will take an object and pretend it is a salt shaker, shake it over whomever looks the most appetizing (most often myself or Tyler) and pretend to eat the victim corn-on-the-cob style. He thinks this is hilarious, and we all got a good laugh out of it for a few days, now it is just irritating to have him pulling on my arm and slobbering all over it. Cute, but annoying.

See how fun life is at my house? How we have reason to laugh, sometimes cry, every day? And this is just with regard to Jacob- blogging about my teenager, Tyler, would be more about anxiety and emotional upheaval (mine) and how I thought life with young kids was hard but I'm seeing that this experience of raising teenagers may be a bigger challenge. Thankfully, for now, Madison isn't giving me any reason to stress out or worry and I am most definitely counting my lucky stars for that small miracle.

So I hope this update has accomplished two goals-catching everyone up on Jacob's newest successes and breaking the cycle of blog neglect that has been so hard to escape.

I'll be back soon, so don't stop coming back to check up on me.

Love to everyone-
~AJ

Goodbye, Sister

2009-04-22T10:04:00.001-07:00

(Jill, Reina, and Carynn)

I said goodbye to my sister and her family yesterday. My brother in law just graduated medical school and is off to his first real job as Dr. Wetzel.They are moing to Colorado in a few days. We have lived an hour from each other all these years, and now I'm feeling like we didn't have enough time.

I'm going to miss my sister's smile and her kind and loving ways, and her kids, my two nieces and nephew, are going to grow and change so much before I see them again.

(Baby Carynn and me)

Farewell, Wetzels! I miss you already!

Country Roads

2009-04-22T00:41:00.000-07:00

My friend and I went for a long country drive last weekend. I stopped to take a few pictures.

It was so nice to drive around this beautiful valley and chat with an old friend.

Black and Blue

2009-04-15T23:13:00.000-07:00

Spring is in the air. It is starting to get warm enough outside to leave the jacket at home (Oregon is a bit behind as far as Spring temperatures go). This is one of my favorite times of year. I love seeing my yard come to life with flowers and the trees becoming green again. My hometown is known as "Cherry City" and to see all of the cherry trees blossoming is a beautiful sight.

This year the warm weather is presenting a new challenge for me. With jackets leftoff, and my arms in short sleeved t-shirts, I am drawing attention, and not in a good way. I have bruises all over my arms- several small, finger sized, and some larger, painful, eye-catching marks, the worst of which is new- a dark, round, obvious bite mark near my wrist. Jacob's mouth isn't the size of a toddler's anymore, so the wounds don't look like they were put there by a child with baby teeth who's bite would be more acceptable.

Jacob's strength continues to increase, and being scratched and bruised is a common malady for both Chris and I. As we sit together at night and discuss the day, rarely a conversation passes without mention of how hard it is to feel as if we are living as battered parents.

When a person looks at my arms they either pretend they didn't notice the obvious, make comments to the people with them I that can't hear, or look in my eyes with question and pity. I haven't decided yet if I'd rather have these strangers know I am a victim of abuse by my child or let their imaginations run wild. Maybe it shouldn't matter to me what anyone else thinks when the see my battle scars, but it is ugly and embarrassing anyway, and it matters more than I'd like it to.

I have been going through my closet everyday as I get dressed, looking for tops that are comfortable in the warm air, but still have long sleeves. I feel like a woman must when she decides to wear sunglasses to cover her black eye. Is it shame?

There are so many questions right now as to how we are going to change the dictator-like control that Jacob has over our home. We have interviewed and hired a new caregiver, a young woman who has two autistic brothers and several years of experience working with lower-functioning kids. My hopes are up that she will have some helpful ideas and can help us make nessasary changes. Sometimes a fresh pair of eyes makes all the difference.

A was able to spend a few hours taking pictures last week. It is one of my personal therapies, to look at the world and its beauty and forget for a while how hard things can be.

Catch me if you can........

This Stinks.

2009-03-27T00:49:00.000-07:00

As if my (justified) paranoia about Jacob smacking unsuspecting visitors as they walk through the front door wasn't bad enough- now the smell of urine saturated carpet is sure to assault them upon first sniff.

Obsessing about having a fresh-smelling home, and single-handedly keeping my local drugstore's room spray department in business, I try to disguise the unpleasantness with the not-much-more-appealing aroma of "floral bouquet" or "Hawaiian Breeze" but I am suspicious that those scents are just as overwhelming and offensive to guests.

CIIS, the State-run program that Jacob is a part of, has agreed with Chris and I that we need a floor that is easy to clean and sanitize and they are going to help us replace 75% of the carpets in our home with laminate.

We have had hardwood floors in two previous homes, and I always said I would never go back to that. I hated having sore feet at the end of every day-carpet is so much more comfortable to walk on. But back then Jacob was content to keep his diapers on and didn't show any interest in playing in his own waste. At this point, the trade off is definetly worth it.

It may take months to happen-lots of red tape to cut through. In the meantime I am giddy with dreams of how much less work I'll have when it comes to housekeeping. Sure, we have two big dogs therefore I'll be sweeping tracked-in dirt and pet hair from every room at least twice a day, but the additional stress that constantly cleaning my carpets has added to my plate will be eliminated. I'm so excited I can hardly stand it.

Oh, what we sacrifice for safety and care of special needs kids. Doors that once easily opened and closed are now rigged with double-sided deadbolts- no one is coming or going without a key. knives and other sharp objects live in the dresser drawers under my pajamas. Food is constantly hidden and rehidden as Jacob dicovers it, and the fridge is padlocked closed.

Nothing is easy, thats for dang sure.

2009-03-27T00:05:00.000-07:00

Sometimes at the end of the day what I need is good long cry. Tonight could be classified as one of those nights. But as I sit here at my kitchen table, the house quiet as all the people I love the most sleep soundly in their beds, I don't want to cry. I want to forget for a moment how much of a struggle just getting through the day can be, and think about what I have been blessed with, before I lay down to sleep.

When so many people are struggling to stay above water, praying to hold onto a job or praying to find one, my husband supports us with a stable job. I have a home in no threat of foreclosure, where I can be comfortable and warm, in a neighborhood where I feel safe. There are no gunshots ringing in the streets, no threat of floods or hurricanes, and for this I am reverently grateful.

So many mothers worry everyday about the health and well being of their children. Medical concerns and health insurance and hunger- these things can devastate a family. I have never had to face this type of crisis. My children have strong bodies, enough food, and doctors are just a phone call away. With the conditions of the world, the widespread poverty and wars, I know I am in the fortunate minority.

I never, ever have to be alone. If it isn't one of my children hugging me and letting me know I am needed and appreciated, then it is my husband. There is always someone to laugh with me, to sing out loud to favorite songs, to share my tears. I don't think there has been a single day in 13 years where I have not heard or said, "I love you."

I am a blessed woman. I never want to forget that.

Worth It

2009-03-03T23:03:00.000-08:00

I do this because I have to. It is not a trial I would have chosen. Too much heartache and too many unknowns.

There are blessings, absolutely. Without this trial I'd be a lesser person. The attributes that make me a good mother to this individuals special needs are qualities I have of because of Jacob.

I was doing a pretty good job of parenting my typical kids before autism came. They have always been happy and active and smart. But nothing ever required the extent of care that is now a necessity and, daily fact of life and I don't know what parenting style I would have grown into otherwise. I don't think that version of me would have been as tough as this one.

I was watching Oprah this afternoon while folding laundry. She was featuring and family who adopted a severely neglected little girl. When the young girl, Dani, was removed form her home she was six years old and had been confined for who knows how long to a small, filthy room with only an old, ripped mattress.

She weighed less than 30 pounds, couldn't walk normally, was wearing diapers, drinking what little she was actually fed from a bottle, and not speaking. The adoptive family wanted to care for a child, and when they saw her there was an immediate connection.

They have taken her into their lives, love her, care for her, work hours upon hours to help her, and are seeing progress in her development. Slow progress, but infinitely more than she would have gotten had she continued under the roof of her shamefully neglectful biological mother.

I watched the videos of her daily life and saw so many similarities to what goes on at my house. She reminded me quite a lot of Jacob. I assume Dani's new parents are dealing with more physical impairment issues than am, and I deal with more aggression and attacks. But, in general, the degree of delay in speech and the unusual behaviors looked the same.

I started off at the beginning of the program thinking "I do that all day. Where's my pat on the back? I didn't have a choice in the matter."

Selfish, I know. As soon as I thought it I felt ashamed of myself. So I closed my eyes and said a prayer for myself. Specifically to feel kindness and empathy, and not the desire for acknowledgement and credit.

I have a Father in heaven, as we all do, who loves me and wants me to be the best I can be, and he lovingly granted me new feelings about the situation almost immediately. My thoughts turned to the generosity and selflessness and open hearts of this family who made a choice to raise a child with such severe disabilities and an unknown future.

They saw her at her lowest, they welcomed the challenge, and they wanted her. That is something to admire. That is true love and charity. They are miles above me.

If I could choose, if I were able to decide to have three normal children and the simpler trials they present, I would have. I'm not that tough. I want things to be easier.

But, again, my Heavenly Father knows me better than I know myself. He knew that Jacob would make me a bigger person. He saw my potential to love unconditionally and to see this special boy as more of a blessing than a burden.

I am a better mother and wife, a better daughter, sister, friend, and child of God because of my personal challenges and experiences. Someone wise said, "I never said it would be easy, but it will be worth it." Words to keep a mother going.

On the days when it just feels to heavy to carry- I can lighten my load with a prayer in my heart. I recall in my mind the blessings I have gotten and the blessings that are sure to come.

Its Not Nice to Hurt Mommy

2009-03-02T00:26:00.000-08:00

Chris and I were trying to cut Jacob's hair this afternoon, which is complete torture for everyone involved. We already knew this and thought we could manage. After about 30 minutes of trying to get him to let us do it without a fight by singing to him, trying to soothe, setting up a movie on the pc in the bathroom, bribing with soda and having no sucess, and a lot of screaming and hurting us, I had to sit on his legs and hold down his arms while Chris used the clippers. We both got scratched, bittten, pinched, etc. I have fingernail and teeth marks and a few bruises on my arms.

But the worst was when I was trying to cut it while Chris held Jacob on his lap. My chest was right in his face, and he leaned forward and bit my breast really hard. I think he damaged something inside. It hurts. :( I thought babies with new pointy baby teeth hurt, but this was an intentional bite form a big strong mouth, and it was 100x worse. This was nine hours ago and the pain has barely subsided.

In the heat of the moment I started laughing like a mad person. Sometimes it's either that or break down and cry. But I really hate when I start to laugh because I feel like I should be in the Nut House, and of course Jacob doesn't understand where the laughing is coming from when I should be yelping/crying/yelling "NO!!"

Fun times. How in the heck will we do this when he is bigger??

But despite a few hours of intense drama and physical exhertion, no day is all bad with Jacob, and I can't write about life with him without expressing my love for the little guy.

He has been dressing up like a mermaid for over a month now. Bikini and fins made of paper and taped to his body. I made him a more realistic looking sea-shell bikini, but he had little interest and discarded it for his homemade creations. Half the time he wants me to be a mermaid as well, and tapes my costume on as well. My family and anyone who comes to our house is getting used to seeing me with a paper crown, bikini, jewlery, tail, or any combination of these things. I don't even try to explain it anymore.

I was going over body parts with him yesterday, and I'm pretty sure he said "teeth." Its so hard to distinguish between real words and his baby talk. And since he never saus anything twice, I never have proof that he has learned to say somethiing new. No amount of begging or bribing gets this kid to repeat a word. At least I got to hear it once.

I enjoyed rubbing his newly buzzed head tonight as he fell asleep, and feeling his breath on my face because we are only an inch apart on the pillow. The sweetest high and the darkest lows- Jacob is a force all his own.

Help

2009-02-09T16:58:00.000-08:00

I have a bruised up arm, a bloody toe, my head aches from my hair being pulled, and my already-problematic knee is killing me.

The freezer door will not close, a vase I inherited from my grandma is broken, a keepsake from a long-ago trip to Mexico is shattered, and every can of corn from my food storage is dented from being thrown.

My home and I- beaten up by a seven year old, once again.

Yesterday evening Jacob was told "no" when he pulled a chair into the pantry and got down a third juice box. This set him off, and today, almost 24 hours later, he is still on the verge of exploding and I am afraid to deny him anything.

One small thing- no more juice after already having 2- caused such an aggressive episode and makes me afraid of my son. His response to anything negative, no matter how insignificant it really is, is hugely over-blown into an event that causes feelings of hopelessness, frustration and real physical pain to me and the rest of my family.

A few things that have caused similar tantrums in the past: a missing toy, brushing his teeth, taking off a shirt he has worn for 3 days straight, bed time, turning off a cartoon, not taking him on a car ride immediately after he requests it, and the most common- denial of food.

I really worry about my feet. I have Type 1 (Juvenile) diabetes, and damaged nerves in the feet is one of the first and most likely complications I face. I'm typing this as my toe still throbs from something that happened over two hours ago.

There is a high probability of Jacob permanently braking or otherwise injuring my toes and feet and my body being unable to heal. Its hard enough to physically contain him when necessary right now, how could I manage if I don't have full use of my body?? I worry about this all the time.

In the past we have tried different medication that are supposed to suppress aggressive behavior. Anti-psychotics (which I hate simply because of the name), mood altering anti-depressants, meds that are simply meant to calm him and cause mild sedation, ADHD and OCD prescribed drugs.

I don't think drugging Jacob is the solution to this problem. I would like him to be his natural, curious, creative self. But at what cost?

Behavioral therapy has been tried and tried again but nothing has worked effectively for long. The ideal solution would be to find ways of calming him down by just using sensory techniques, but we have yet to find any trigger for this behavior other than simply not liking what his dad or I request/deny him.

I went around the house today and moved everything he might be able to throw or otherwise hurt anyone with. But we cannot afford to buy a new fridge, so what do i do about that? Chris has already repaired it a few times, and it is barely a year old. I can't replace many of the broken or damaged items in my home, and I cannot afford to repair the bed/table/couch/TV and other items that cost more than free.

As I am typing this, Jacob comes up to me and kisses my arm, looking adorable in his homemade mermaid costume (The Little Mermaid is his current obsession) and smiling like he wasn't trying to hurt me just a while ago.

Tonight as he gets tired (medication-induced) he will want to snuggle close with his arms tightly around me. I'll hug him and kiss him and think about how soft his skin is, still like a baby, and about the many blessings he has brought into my life.

And as he falls asleep I'll pray for help.

2009-02-02T09:22:00.000-08:00

Here in Oregon, even the Rest Stops are beautiful.

ARE YOU KIDDING ME!?!

2009-02-01T23:45:00.000-08:00

This is the most riduculous thing ever. Seriously- this dog's head can reach any part of the table perfectly without even getting up on her two back legs. So when I caught her doing this tonight you could say I was a little ticked (but I still had to run and get the camera before she knew she was in BIG TROUBLE.)

Wiping (the Smile Right Off of My Face)

2009-02-01T22:32:00.000-08:00

If you are not the parent of a special needs child, a mom or dad who has very recently undergone the process of potty training, or a person who is easily grossed out (Sharlie), you may want to skip this post.

I have never, not since Tyler was born in 1996, been free of changing diapers. Not for a single day. I remember, all those years ago when my kids were infants and toddlers, complaining to Chris or whoever else would listen about what a pain it was to change diapers all day long.

Then after a while, three kids and 5 years into it, diapering just became second hand- not my favorite task but not a big deal, either.

I think it was 2005, when Tyler and Madison were long past that stage and Jacob was 4 and still in the thick of it, that I became completely DONE with diapers and wipes and all things poopy. Unfortunately, my being over it and ready to move on did not prove to be reason enough for Jacob to feel the same way.

Totally inconsiderate, if you ask me.

So here we are. It's 2009 and Jacob is almost eight and his rear end is way to big to be swathed in not-absorbent-enough cotton and I'm almost 33 and ready to have only my own large bottom to be concerned about and if a magic lamp with a wish-granting genie fell into my lap the first words out of my mouth would be ."I'm so sick of this poop."

Jacob's teacher, bless her, has trained Jacob t0 be 95% dry during school hours. He leaves on the little bus in underwear and comes home 7 hours later wearing the same pair. He pees in the big-kid potty in the school hallway and gives her no trouble.

He has never had a BM at school. He saves that for me.

On one hand I'm glad that he isn't subjecting people who don't love him as much as I do to the most unpleasant part of parenting. On the other hand it would be really awesome to have that part of his day over and done with before the messy task falls to me.

At home we can get Jacob to use the potty for going #1 about two-thirds of the time. He still has accidents in his clothes and often takes off his undies to sneak on a diaper when we aren't looking and sleeps in a pull-up every night.

So as much as I want to move past this stage and onto the next one, I have an admission to make to everyone that I have never made before: I am afraid to let him wipe. I would prefer to have all the poo contained to the diaper where I can clean it all away and put it in the dumpster and be done with it.

I know my kid, and I know that he would be very interested in the wiping part of having a BM on the toilet. I cringe, I whine, I don't breathe through my nose, but I shudder even more at the thought of Jacob's little hands soiled and spreading germs on the walls and toys and in my hair before I realize he has attempted to clean himself. Because then instead of the gross-but-familiar routine of "clean and dispose" I would be forced to be on Poop Watch 24/7 to avoid the mess getting anywhere but on the paper and flushed away.

I know, I know. I need to suck it up and do it. I need to follow him around, guiding him to the toilet and suffering through stinky hands and dirty fingernails and washing and washing and washing, forsaking all else, every hour of every day that he is home with me, until this goal of completely potty trained is met. He hasn't shown any interest, understanding or desire for this part of life yet. So starting the process is all up to me.

I don't wanna. Its yucky. I already do lots of yucky stuff. Aren't all these years of suffering through it enough? Don't I deserve one easy thing? Feel sorry for me!!! (Read all that in a whiny, pleading voice.) I am stuck doing something that I can't stand and that will only continue to get harder. I'm taking the easy(er) road now and trying not to think about how much more difficult this going to be as we both get older.

I need suggestions and advice and above all else and live-in nanny to take care of the dirty deed for me. Seriously.

Is Cannibalism Back In Style?

2009-01-20T23:24:00.000-08:00

Jacob has an amusing new antic. It took a few times of him doing this for me to
realize what he was doing, and now that I understand, I can't stop giggling about it.

It started with him trying to force me to sit on the kitchen floor on a paper towel.
I wasn't sure why, the linoleum was dirty and I didn't want to do it.

He tried this several times, and I did sit down for a second, but I was unsure what the point was- and there is always a point to what Jacob makes/wears/acts out.

After several attempts to get me involved in the mystery game, he got a plate out of the cupboard, and tried to get me to sit on that as well. Whatever- my butt does not come close to fitting on a plate and I didn't really want to prove myself right.

Jacob caught on that I didn't want to comply and thought up an alternate plan. He taped the plate to my rear-end. If that wasn't weird enough (despite me being totally used to having things taped onto me by this kid) he started to pretend to eat me.

I got it! He was serving me up on a platter!

Since I like to give Jacob his food on a paper towel, of course that was he preferred way of dining. But stubborn old mom needed a little more to understand the game.

He is so adorable pretending to nibble on my arms and stomach, making gulping sounds and laughing at himself.

This evening he brought me a sandwich he had made: bread, ketchup, cheese, and action figure. Not sure where this hunger for people came from, but its keeping me entertained!

The Kindness of Strangers

2009-01-20T23:00:00.000-08:00

A friend of mine had a really horrible incident this week with her kids in a restaurant. She ventured out on her own, hugely pregnant and with three kids under six, hoping for a break from cooking and a fun time at a family-oriented place.

She recounted the story of how her kids (all boys) were behaving very well. Being a bit silly and wiggly, as all kids do when they are confined to a chair for the duration of a meal, but nevertheless getting along and enjoying themselves. Then a manager approached her table and said there had been a customer complaint, and proceeded to condescendingly (and loudly) lecture my friend and discipline her children.

After hearing her story, I got to thinking about all the times we have had comments and reprimands and nasty looks from strangers. It is not uncommon for a mom who is trying to soothe or discipline her child to have the people around her glare, tsk, and comment. Even the best behaved kid throws an occasional tantrum in the grocery store or refuses to walk and collapses to the ground and my own kids are certainly not exempt.

Having a special needs child like Jacob increases the likelihood that these situations will become regular occurrences. There have been more than a few incidents of unfriendliness and misunderstanding and each one has left me hurt and questioning the decency of people.

A mom like me (or any mom for that matter) has enough reasons to be stressed to the max or feel inadequate to parent this child she has been given. The disapproval of strangers does nothing to control the situation, comments said under breath but meant to be heard are extremely insulting and just make it harder for me to take my child in to the community (the cummunity that he has a smuch right as any other person to be a part of) and keep up confidence.

I was lying in bed last night remembering the times I have been offended and criticized but unless you have a hankering for bad dreams, that is no way to fall asleep. So I made a decision to focus instead on the time when strangers have been gentle, positive, and helpful. To my pleasant surprise there was no shortage of simple kindnesses I could recall.

A little patience and a sympathetic smile means so much. Interested, wondering looks are great. I want people to understand Jacob and questions do not offend. A helpful hand and gentle voice can make my day.

"Kind words can be short and easy to speak but their echoes are truly endless." -Mother Teresa

2009-01-05T17:12:00.000-08:00

Whew. What a month. It started with seven days off school due to snow during which were unable to leave the house for 6 days. We celebrated Madison's birthday on the 12th with a houseful of preteen girls, and then the real 2-week Christmas break started. We said a teary goodbye to Grandma (who moved away from Oregon after 50 years), went to a few parties, received one of my sisters home from Italy and another from Germany. We had a great Christmas day with just our little family, and then ended the season with Tyler's 12th birthday and fireworks on New Years.

The holiday decorations are put away, kids have returned to school, and I'm back to work in the morning. No more staying up late and sleeping til 10, but the house will stay clean for a few hours longer without little people leaving trails all day. I can't wait to resume my three-day-a-week midday nap schedule. The only disappointment of the whole season is that my camera has kicked the can. No pictures of any of the birthdays or other events, and it really kills me. It was just a simple inexpensive point-and-shoot, but regardless my love of photography is fairly recent and I didn't realize how much I'd miss it.

The newest biggest event is still to come. 75% of you will think we are crazy and many of you may avoid coming back to my house ever again, but despite those odds we are getting a new dog.

No biggie, right? What if I tell you her name is Mercy Me and she is one year old and still growing?

Oh, and that she is a 115+ lb Mastiff. She will be as big as my husband and around 200 lbs when she is full grown.

Our puppy search has been going on for several months because I have been holding out for just the right dog. When I heard about Mercy I had to go see her that night. I have always wanted a really big dog, and obviously she meets that criteria.

All the details about her add up to a really great pet- drymouth (no drooling), shorter hair, amazingly calm for such a big creature, great hips, eyes and elbows (concerns for a dog this large). As is typical for Mastiffs, she'll intimidate the heck out of strangers and mailmen with her deep bark and 6'2" standing height, but is actually very gentle and only corners in threatening people rather than biting.

Her current "parents" are a lineman and a special needs mom, just like Chris and I. She has been around small kids since she as a new pup, and has a special connection with her current family's special needs child. I'm sure an animal this size will be able to endure Jacob's brand of attention. I have done a lot of research on the breed, and was surprised to learn about their calm nature, gentleness, and loyalty.

My personal goal, besides having her love me the most, is to get her to pull me up the hill after we take walks together. We live at the top of a hill that I haven't even attempted to walk yet but with Mercy on a leash I should be able to conquer it. A pet her size needs to get out and exercise a few times a day and you could say I'm counting on her to be my personal workout motivation and trainer.

Friday evening we go pick her up, and its all the kids can do to not jump out of their skin with excitement. I'm enjoying the last few days of living in a relatively pet hair free home. That is definitely going to change.

Take Another Little Piece of my Heart.

2008-12-14T23:55:00.000-08:00

It always happens just when a mommy thinks she may run away from home. Right when the mess and the noise and the lack of privacy gets to be a little to heavy.....one of her kids does something charming and perfect and she forgets all her reasons for thinking an escape was the only option.

It has to be a gift from God that a mother can survive day after day, repeating the exhausting routine, fueled only by kisses and love.

My daughter turned 10 last week. It seems like just yesterday I was bringing her home from the hospital, cliche' but true, and now she is a tall, beautiful young lady. Madison sings, dances, runs, laughs, creates and fills this home with originality and fun. A big part of the energy in our family is thanks to her. I have always considered her my rockstar.

Madison hasn't ever been very interested in reading, but something has spurred her on recently, motivating her to spend several hours each night absorbed in fiction. It has been such fun to have her call me into her room so she can tell me all about the characters in her books.

I remember doing this with my own mom. Trying to explain the plots in a way that mom would get as excited about it as I was. What is interesting to me now is that as Madison is talking with her hands and making such expressive faces, I'm not nearly as focused as I should be on what she is saying but on how smart and funny and emotional she is and how I feel so connected by this passion we now share.

Today she asked me to buy her a book she has been bringing home from the school library so that she can read it again when she is done. I'm such a book nerd that I still have shelves of paperbacks from when I was her age and it is making me ridiculously giddy to have her read the same stories I loved so much.

Tyler, my middle schooler (still seems unreal) is fiercely dedicated to being excellent at football and to getting all A's and so far he hasn't had anything less than success. He tells me so every day as soon as he walks in the door. Tyler gets up and ready early every morning without me having to wake him, does his homework first thing after school, helps me out a ton, hugs me and asks me how my day is going......the list could go on and on. He is fun, smart, athletic, kind, and well rounded all-American kid.

I don't know how I got so lucky, and believe it a miracle that Chris and I with all our bad habits and imperfections could produce such a fabulous young man. He was the blessing that changed my life all those years ago and he continues to bless me every single day.

Jacob- chunk of my soul that walks around outside me. There are days that I can't tell where he starts and I end. His little steps forward put me on top of the world while the struggles he has break my heart.

As my other kids are growing up and gradually stepping away as they should be, Jacob still needs me as much as ever and I can barely entertain thoughts of having him cared for by anyone else. It still scares me every time I send him off on the little school bus to face the world alone so I stand and wave goodbye until the school bus is out of view.

These children of mine are my ..... The progress and the setbacks, the laughter and the tears- I feel it all so deeply and praise Heavenly Father for letting me have this connection to 3 amazing little human beings. Time passes and they grow and it gets closer to when they won't be mine as much as they will be their own. No matter where they go and who they become, they will always have a big piece of my heart in their hands.

My Words and Hers

2008-12-11T01:22:00.000-08:00

How Sweet The Return

I leave because I then return
To hear a treasured little voice,
Echo through my warm home,
"Ma?"
And the strongest little arms I know come crushing,
"Ma."
And two hearts beat in time.

-mommy

Child of My Love, "lean hard,"
And let Me feel the pressure of thy care.
I know thy burden, child: I shaped it,
Poised it in Mine own hand, made no proportion
Of its weight to thine unaided strength;
For even as I laid it on I said-
I shall be near, and while she leans on Me,
This burden shall be Mine, not hers;
So I shall keep My child within the circling arms
Of Mine own love. Here lay it down, nor fear
To impose it on a shoulder which upholds
The government of the worlds. Yet closer come,
Thou are not near enough; I would embrace thy care,
So I might feel My child reposing on my breast.
Thou lovest me? I know it. Doubt not then,
But, loving Me, lean hard.

Charlotte Bickersteth Ward (1822-1896)

2008-11-11T13:24:00.000-08:00

Jacob "Indiana" Jones

2008-11-11T12:55:00.000-08:00

Jacob has always been fascinated by the characters on movies and TV shows he watches. Our family has had a lot of laughs watching him morph into Spongebob, Dumbo, Scooby Doo, Pharaoh, Mufasa, and most recently, Indiana Jones.

This newest character obsession caught us by surprise. Jacob has never shown much interest in shows that aren't animated. When he kept bringing me the Crystal Scull DVD, I thought he didn't realize what he was asking and kept trying to put on one of his old favorites instead. He got ticked at me for not understanding, and rather than turn in into a fight, I chose to put it on and wait for him to get bored of it.

But he didn't. He watched the whole movie through, and then had me start it again. I was beyond surprised, seeing as Jacob has never sat through an entire non-cartoon before, ever.

This seems like a big step forward- enjoying and somewhat understanding stories revolving around human characters. My hope is that it will lead to more of a connection with the real people in his life.

In true Jacob style, it wasn't long before he was searching the house for items to assemble his costume. And what he can't find, he creates. So here we have, paper whip and all-

Jacob "Indiana" Jones

I can't wait to introduce more of the best movies to him and see where his imagination takes us.

2008-11-04T09:14:00.000-08:00

2008-11-04T09:06:00.000-08:00

Love in a Different Launguage

2008-11-03T22:45:00.000-08:00

When you haven't slept an entire night through in 7 years.
When he runs across the street, opens a neighbor's door and lets out their dogs.
When two gallons of milk end up in the hot tub.

When you feel like autism is overwhelming and you never get a break, you have a wonderful moment with a special child who makes it all ok.

When he says "pizza" at school but refuses at home.
When teacher insists he write his first AND last name, but you have never seen him do it.
When you discover important papers cut into shreds.

When being the mom is the hardest thing in the world, your innocent child draws you a picture of a crown and tapes it to your forehead and you remember how often he makes you laugh.

When you have to pull your kid off the bus driver.
When poop becomes a fun toy and your carpet cleaner is dead.
When you have bruises and bite marks that hurt and make the other shoppers stare.

When you feel sore and exhausted and you just want to cry, that is just when your son takes your hand, kisses your arm and pats your tummy gently and you know he is loving you in his own way.

A Weekend in Autumn

2008-10-26T00:34:00.000-07:00

Not Yet

2008-10-21T23:08:00.000-07:00

I spent last Wednesday interviewing respite care providers. My goal is to hire and train three employees to take care of Jacob. Seven days later and I cannot bring myself to offer anyone the job. I want to, I really do. It would be a substantial relief to have someone to call on when I need help with caring for Jacob.

I want a real professional to tell me what to do. I do not like being the boss. I am not good at it.

There were several nice people who applied to work with Jacob. Only two with any real experience, but all very open to being trained for his specific needs which is really all they need.
Regardless, I am having a ridiculously hard time extending trust to someone that I do not already know to care for my most vulnerable loved one.

Whomever I decide to hire would go through fingerprinting and background checks. I could fire this person at any time if I had reason to. This should reassure me, right?

Except how many times does an individual with perfectly clean background turn out to be the bad guy? Maybe not even the bad guy but simply not very nice, or just unobservant enough to let Jacob slip out the front door?

What if he is crying and they don't comfort him but instead decide he needs to suck it up? Jacob can't tell me, not in any typical way. I have to rely on what I see and on my mother's intuition. So what if I don't notice if something is amiss? Perhaps it is my own instincts that I do not trust.

Are my fears valid? Do other parents feel the same way when the time comes to put the care of a special child into the hands of someone else? Do other moms and dads just continue to avoid making a decision, or are they able to get over it and be happy to get the break they deserve?

How can I expect Jacob to grow and accept new people and experiences when I'm not even giving it a chance?? I feel like a child myself-knowing what is best for me, but choosing to be stubborn. Am I shortchanging him? If I hold off for now will he miss out on something that could have changed his life?

Chris and I have been attending to Jacob's every need with no help for all these years. As difficult as it is at times, we love him and want the very best for him. No one else will ever feel like we do for this little boy. To let go of this now and depend on a stranger is a monumental change for my family.

I am not ready.

A Day To Go Down In History

2008-10-02T21:41:00.000-07:00

Is it possible to have one of the most disgusting autistic events and a great day of progress at the same time?

Yes. Yes, it is.

Poop. I could go into a lot of disgusting detail, but I'll spare you. I will say these words and you can use your imagination: spoonfuls, mold, mysterious smells, trampoline netting, smears, rotating fan, Jacob. Have fun with that.

And now for the good stuff because I'd like to get the occurrences of the last few hours out of my mind. However I doubt I will ever forget. It's seared there forever.

Jacob has displayed two new skills to us today- nodding and mimicking sounds. Funny that those two things are so thrilling to the mother of a child as old as mine, but if you know the history (which I assume you do if you are reading this blog) then you know that the seemingly smallest progress can be an incredible advance.

This morning I asked Jacob if he wanted eggs for breakfast, not really thinking he understood "eggs" and "breakfast", more likely the pointing that I was doing. But then he nodded enthusiastically. Of course I thought it was a total coincidence. So I asked him if he wanted cereal, and he made his "NO" sound.

Then I asked him again, not pointing to the egg carton this time, and he definitely nodded. After he finished eating I asked him if he was all done, and he nodded again! Three times in appropriate context, and I am convinced he has learned a new skill. Yay!!

When Jacob got home from school today there was a small note from his teacher in his backpack. She wrote that Jacob was mimicking words today. Repeatedly. Mouse, Jones, Yellow, Up, Jacob. I know that the words probably didn't sound like they would if you or I were to say them, but who cares?? Any effort in the way of language is a really, really big deal. Really big.

Of course he had no interest in copying anything I tried to get him to say, but stubborn is his middle name and I didn't expect him to give me a repeat performance. Jacob has his own ideas of who he wants to thrill and when. I have been waiting for all these years to hear his sweet little voice say something more, and I can wait for however long it takes him to show me what he can do.

Tonight as Jacob was getting ready for bed he willingly brushed his own teeth. This is always a big dramatic scene at bedtime, and I really didn't believe my eyes even as it was happening right in front of me. No toothpaste and not close to a dentist-worthy cleaning but, again, who cares?? This is PROGRESS!!

The good things really outweigh the bad today. I'll get over the poop incident eventually, even if it never really leaves my mind. And the expressive language/mimicking sounds is enough to keep my on a high for a good long time.

These emotional ups and downs all squished into one day really wears a mom out. I think I'm going to have happy dreams tonight.

Creatures

2008-09-22T00:35:00.000-07:00

Fun stuff found at our house in the past few days. Only the boys were happy about it. :)

Mama's Boy

2008-09-21T23:28:00.000-07:00

When your child is a toddler its flattering to have them attached to you. Wanting mom, giving hugs and kisses, displaying such pleasure when you pick them up.

But when your child is seven and shows that favoritism, to a dramatic degree, it is not so fun anymore. At this point Jacob's development is similar to that of a two year old. So this phase that is common when your kid is two is understandable to us, but that does not make it easier to deal with.

As hard as it is for me to be the one who MUST do EVERYTHING for him (diapering, preparing food, playing games and coloring, putting to bed) it is harder for his dad. The level of attachment hasn't always been this strong. Chris and I used to be pretty interchangeable, as long as Jacob was getting his needs met.

Increasingly, Jacob refuses to even sit with his dad. He smacks him away and refuses kisses. Then he will turn to me in the next second and throw his arms tightly around me. It feels like a competition for my attention and affection. And I don't like it.

My most recent method of resolution has been to show him less affection if he has just refused it from his dad. A small hug and a kiss, but that is it. Then I make a big display of kissing and hugging Chris, hoping it will make Jacob see that its appropriate and enjoyable and maybe he'll want to do it, too.

I also tell Jacob to "go see daddy" when he is making a request (re: demand) of me. Chris is happy to help his little boy, but Jacob very rarely turns to him for help. If I am gone, dad is treated a little better. Jacob is dependant, and he knows that an adult needs to help him.

The withholding of affection hurts Chris, and the aggression towards him is just too much. Being pinched, kicked, hit and scratched is such a blow when all he wants to do is care for his child. It makes me very sad to see and eager to find out how to change this pattern.

With his size it is getting harder and harder for me to do everything. I can't put him in the bath alone, sometimes changing him requires a stronger hand, and I definitely cannot carry him. Often Chris has to deal with the fight and manhandle Jacob into compliance simply because he is the stronger of the two of us.

I am concerned about the time when he is stronger than me (it will not be long) and I am still expected to be his only caretaker. What happens then? Is this the point where a parent considers putting her child in residential care? The thought makes me sick to my stomach.

There are so many struggles and challenges in raising children with severe autism. These kids can be our biggest blessing and our toughest trials.

2008-09-15T22:27:00.000-07:00

2008-09-15T21:59:00.000-07:00

We are stuck in Diaper No Mans Land.

Jacob is still wearing diapers about 60% of the time. Over the past seven years we have been working our way through every brand and size, adjusting accordingly as Jacob's body changes, and now we are hitting a brick wall.

He's tall and heavy, no question, but he's not fitting into even the smallest adult size diaper. They just aren't made to be worn by active little kids. So in just the past week we have tried four brands, hoping that some company has made their diapers fit more like a toddler's pull-up. Now we have bags of crappy diapers (hehe) we won't use, and still no solution.

Jacob is 4 ft tall and 125 lbs. He needs the pull-up type diaper to encourage toilet training. It has to fit smoothly under his clothes as to not draw attention at school (my concern, not his). And it would be great if the leg holes didn't squeeze his chubby thighs and leave red indentations. You can see the dilemma.

Up until recently we have been using Goodnights brand pull-ups. They are meant for overnight use, but they have been the best diapers for Jacob for daytime use as well. Something like this but larger would be ideal, but I have had no luck in my search.

So what do I do? My son's doctors and therapists don't seem to know what to do any better than I do. I assume there are a lot of parents who have dealt with this same issue: Where can I find a quality diaper that properly fits bigger kids who are not potty trained?

I am sending that out to you- crossing my fingers that someone on the World Wide Web has just the right answer. If you are a parent who found a great solution, I'm begging to hear about it. :)

Summer's End

2008-09-02T22:40:00.000-07:00

School starts tomorrow. Three months ago I was anticipating a really hard summer. And now its over and I'm anxious to have some freedom again, but already missing the laid back fun and late night drives with my kids.

Tyler is off to 6th grade. Middle school. He's very excited about it, I'm a bit more apprehensive. Tyler was a perfect baby in my arms just yesterday. He's continued to be a kind, fun, smart kid as he's grown. I just hope he continues to talk to me and let me hug him. I know that a lot of the rules could change. I don't feel grown up enough to have a child this old.

Madison will be in 4th grade. She's not to happy with her teacher or classmates after reading the list. None of the other kids she befriended last year are in her class. But I reminded her that she was only at this school for a month before the summer, and there could be lots of awesome girls in this class just waiting to make new friends. I really want her to find some good friends. That would be such a boost for her. She is getting more beautiful every day.

Jacob will be in the same classroom he was in for the last year. I am very glad about this. The teacher is great, and Jacob has the same 1:1 assistant as before. We have been struggling with aggressive behavior and I think that the routine of school will make him happy and calmer. His comprehension has been improving so much and I can't wait to see what new things he will learn this year. I think he will like the return, if I can just get him on the bus in the morning. There will be two of us if it comes down to having to manhandle him into the seat. Fun.

Chris will go back to school is a few weeks as well. He is on his last year of night classes and is a 4.0 student, which those who knew him at any stage of his K-12 years might find hard to believe, and was recruited to the Honor Society and a fraternity, both of which he couldn't care less about, which should not be hard to believe if you knew him during those same years. :)

I go back to work next week. Just my part time personal assistant job, but a little cash that is needed. The expense of buying this home has been harder that we thought. And the kids are not getting cheaper as they get older, unfortunately. Any extra money we earn is a blessing.

Chris and I have a 5 day vacation at the end of the month. We are going to Vegas and to my small hometown in Arizona. We are both so anxious to have some time alone, and 5 days is perfect. Neither of us has been to Las Vegas for years, and that will be an adventure. Then when we go to Page, I plan to take a million pictures and work on my photography skills. What a perfect landscape for practicing.

I have been feeling a bit out of sorts lately. I generally find myself pouring my heart out and gaining balance when I sit down to write. For some reason that has been hard to do, and I think I understand writer's block. I have always been grateful to have this outlet, this free form of expression. I hope I can quickly resolve whatever is holding me back, and share my life and experiences with all of you more frequently. Love to all~

~Alaina

Say When

2008-08-18T17:53:00.000-07:00

How do you get a Prince to turn off his charm?

No, it's not a joke, although I bet I could be a good one. It is the question I have been debating with myself lately: at what point does expressing affection become inappropriate with special needs kids?

I love that Jacob kisses me, holds my hand and wants to be near me. I love that he brings me a flower or stick every time he comes in from the backyard. It is touching that Jacob draws me, shapes me out of play dough, carries objects around and calls them mom. These are his physical expressions of love for me.

He wants me to be the one who prepares his food, helps him with potty training (yay), and tucks him into bed. He cries when I leave.

This must be one of the things that parents of autistic children wish for the most: connection. So, of course, Chris and I always encouraged any sign that he was aware of us and wanted to interact. Dress-up, drawing, kissing and tickling, chasing, verbal objection, laughing out loud, making any sort of sound at all. We treasured and encouraged these moments.

How would I use my body to express these feeling if I had no words? Without speech, body language and deliberate actions are so much more important, key, for expressing emotions: love, pain, excitement, frustration, fear.

How do I enable him to "talk" in his way, with every part of his body and creativity, while calming the intensity? It has taken six years to get our communication where it is, and now I see that it needs to change. How do I teach body boundaries, especially when its something like kissing, encouraged for all his years?

I want Jacob to continue being the exuberant, joyful child that he is! But how much longer will other people tolerate Jacob climbing around in their personal space? Kissing lips, cheeks, foreheads, indiscriminately touching bodies with no awareness of boundaries?

What is the answer? Will you let me know? I'll keep accepting those flowers and kisses for now.

The Big Payoff

2008-06-30T21:38:00.000-07:00

Jacob has been making some fantastic progress. Five years of therapies and programs and attempts to teach him basic skills with very little improvement has been so discouraging. And in the past few weeks he has exploded with understanding and compliance.

We have had very few aggressive outbursts, which has made a world of difference for us here at home. A few months ago,when Jacob seemed to be attacking Madison nearly every time he saw her, we knew something needed to change quickly. Chris and I sat down with Tyler and Maddie and talked about what we could do to help Jacob be more gentle and how to deflect his hitting and pushing and steamrolling without running away and yelling, which just seems to encourage him more.

Our solution was that whenever Jacob started coming towards one of the other kids, they would put their arms out to hug him, and tell him he's a good boy and that they love him. Tyler and Madison worked really hard to do this, and after a few weeks we noticed a difference. Jacob was responding and enjoying the reaction he was getting from being affectionate more than the previous reaction that he was used to. And now he wants to hug every chance he gets. He still rams into you unaware of the force behind his size, and we all have to be prepared to get knocked off balance, but it is a huge improvement and we are very pleased.

Jacob's receptive language is increasing more and more every day. We have been using the same terms and simple 3 word commands for so long. Years of Jacob only understanding the most basic requests had us doubting he'd learn to communicate any better. But, miracle of miracles, he is responding to our speech and surprising us every day.

Although his expressive language has not changed, this surge of understanding has made daily life much easier. We are more able to request things of him, and he is realizing what we expect.
Doesn't mean he always listens, autistic kids have a remarkable way of completely ignoring you, acting like you are not even there, when they are focusing on something else.

Jacob has had a fascination with Spongebob for several years. He has been drawing Spongebob and Gary over and over, improving the detail of his art each time. A few days ago I was trying to distract him from TV for a bit, and we got down on the floor to draw. I asked him to draw Spongebob, which he easily does on request, and then I continued with the other cartoon characters. I know he recognizes them by picture, but I was unsure if he would recognize them by name only. As I said, "Draw Squidward" (and Mr. Crabs, Patrick, Plankton, a Crabby Patty, a car, school bus) he knew exactly what I was asking of him and drew them all. And today we had a sitter here for a few hours, and she asked him to draw a flower, and he did. It proves how much he is beginning to understand words, and it is making me incredibly happy.

He has been stuck at the developmental age of about 18 months old for 5 years. All these years of trying to teach him these same things. All the disappointment when he did not understand despite hours and hours of attempts at teaching him, and finally it is paying off. He is making progress. Slowly, sometimes painfully slow, but progress nonetheless. I'm anxious to see how he continues to grow. I'm so proud of him.

Exit Strategy

2008-06-16T20:14:00.000-07:00

It has always taken a well thought out plan to leave my house. There is no ordinary walking out the door and closing it behind you. It is much more like a secret escape- keys held tightly in hand to keep from jingling and giving you away, whispered goodbyes, walking softly on tip-toes, gently shutting and locking the door behind you, like a cat burglar might do. All to avoid allerting my seven year old to the departure.

We don't even let him see us put our shoes on, and especially not our jackets. If I am holding my purse, even just to pull out my cell phone or wallet, Jacob gets anxious and assumes I am leaving. He has gone so far as to seal the front door completely with masking tape, in his simple way of trying to prevent mommy or daddy from getting out.

Chris and I have used distraction (one of us takes Jacob outside so the other one can slip out) so many times that Jacob has become a little suspicious. Those times when Jacob catches on and is inconsolably upset, I will load him up in the van and drive him around the block a few times. He accepts that that was the plan all along and the reason mommy got her shoes on, and it is easier for me to make it out a few minutes later.

Trying to leave without attracting Jacob's attention, to avoid a wailing, thrashing tantrum, has taken more than it's fair share of time. It is like when your toddler has separation anxiety, only this child has not been a toddler for five years, and his reaction has grown along with his body. Extreme Toddler.

As you can imagine, this is a huge inconvenience for our family. Makes it very hard to stick to a schedule or leave at the spur of the moment.

But, even worse, is his reaction when he sees a suitcase. This means long term leaving, and he knows it. In the past when I have been packing to go somewhere, I'll come in the room to find him pulling my stuff out of the bag and putting it away. He'll even drag the luggage back to the storage closet, as if this will stop me from leaving him.

It is actually quite adorable, quite irritating, and quite sad all at the same time. Who doesn't feel good when a child desperately wants to be with them? Who doesn't go a little crazy when a child won't let them go? Who doesn't want their child to be happy and tear-free?

This weekend I am going to Seattle with a group of friends. We are meeting to carpool at a location an hour from my house. The arrangement made is that the woman who will be watching Jacob that day will drive me there and drop me off, then return home with my van so that Chris can have it while I m gone. He can't be without a vehicle, and getting me to the meeting place during the work day was tricky to figure out.

What this boils down to is this: Jacob will see the suitcase in the car. He will see that the sitter is riding with us. Then we will stop and I will quickly get out and grab my bag, while hurrying so that he does not climb out after me, but still needing to give him a proper kiss goodbye because how can a mom leave without doing that?

Jacob will realize what is happening, he will try to bust out while the babysitter struggles to hold him in and keep his seat belt fastened. This is far from easy when you are in a confined space and you are not as young as you used to be and your opponent is very heavy, unusually strong, and fiercely determined.

She'll eventually drive off, I can almost guarantee, with Jacob screaming and kicking the back of her seat, and I'll be left watching them drive away, praying they make it home in one piece, hoping he'll forgive and forget before too long, and reconsidering my Girl's Weekend Out.

This is not the first time, and it won't be the last, and it isn't getting easier. I'm trying to imagine how I will ever manage to leave my home when he is 15 and as big as me and blocking the doorway. Not a pleasant picture. Somethings gotta give.

There are so many positive changes in Jacob's behavior and communication right now that it seems silly to be complaining about anything. Although he still isn't speaking, I am rejoicing every single day as he understands more and more of what we say to him. But I have to wonder, will I ever get a smile of understanding when I say, "Goodbye, I love you, I'll be back soon."

2008-06-12T15:16:00.000-07:00

Things have been going so well here lately. And like I said a few blogs ago, I tend to write to relieve stress and work out difficult situations, so my blogging has been less frequent. Look at it as a good thing when you don't hear from me for awhile. :)

Jacob's aggression has decreased dramatically. We still get outbursts of hitting/kicking/pinching a few times a week, but it used to be several times a day. We have worked hard to change our reaction to him, and the result has been that he wants to hug and kiss us all the time because its nicer to have us responding with a smile and an I Love You than the time outs and crying that has been happening for so long.

Madison is still working on her reaction to him. She is so accustomed to having to defend herself whenever Jacob comes at her, so it has been a hard transition. But every day she's getting better at turning his pushing/hitting into hugging. They are both happier as a result. We are all so much more relaxed when we don't have to constantly brace ourselves against being bulldozed.

The change from aggression to affection is working for now, but he's so big and strong that it can be inappropriate to anyone else but our family. He doesn't realize he can't pat people on the breasts, or kiss them right on their crotch, and we have had a few embarrasing situations. We make a point to touch appropriately, but it is a little above Jacob's developmental level at this point.

Jacob has been using the potty! This is huge! I have had nightmares about having a 12 year old that I still need to change, so this progress has me hopeful that he can be fully potty trained at some point. He didn't have a accident at school for the last six weeks. Although he won't poop on the potty, he saves it till he gets home. Not pleasant, but I have just become used to cleaning up after him. For the most part it has been trip training- when we take him into the bathroom he'll try to go, but occasionally he will take himself there without us prompting him. Chris and I are very happy with this progress. I give the credit to his teacher who was vigilant about working on it at school. It made all the difference.

Jacob's receptive language is growing and growing. Everyday he seems to understand more of what we are saying. I'm often surprised when he responds to something I say when he hasn't ever reacted as if he understood before. Generally it is commands that he is following, "Put that in the garbage" "shut the door" "get your shoes on" "sit at the table." Simple, basic phrases, but its a start. It is so great to feel like we can communicate with him more easily. He still hasn't begun to use any words, but we are getting closer.

The transition to the new house has been great. It has made a big difference having a two-level home. All of us are much happier with a little space to stretch. Jacob's bedroom here is nice and bright and clean, and he hasn't become obsessed with sneaking food in there like he was doing in our old house. The fact that the kitchen is down the stairs and away from his room has detered that. Food is still our greatest battle, one we deal with all day every day, but we are able to hide the most tempting foods better in this larger space.

He loves the backyard, and has been spending quite a bit of time outside exploring and picking flowers and digging in the dirt. We don't have the play structure assembled yet, and aren't sure if we have room for it, but Jacob is happy just to be outside. We have a large deck that takes up a good portion of the yard and he likes to wander around on it and "talk" to himself. Jacob is finding enough to do out there that we aren't in any hurry to add anything just yet. I am loving all the flowers and plants, and the privacy that we have.

So while home life has gotten better, significantly so, we still cannot take him anywhere. School was the one exception. Chris and I have tried taking him a few places in the last month. Even with both of us there, it has been a stressful, exhausting disaster. He just wants to run and grab things and pick up small children, and when we need to get him back in the car he freaks out and kicks us and makes it impossible to force him in. We come away from it worn out and shaking and sweating and it really affects us. Makes us embarrassed and disappointed that we can't do something so simple with him. Then we start to think of all the things a "normal" family with kids our ages could be doing. The freedom......

Summer break started two days ago, and I'm very anxious about how I'm gonna feel being at home all day everyday. I really wish Jacob was able to go places. We live 45 minutes from the beach, and it would be so nice to take day trips with all my kids. With their ages it should be so easy to pick up and go to a park or ANYWHERE! I'm just hoping and praying I can enjoy the time with my kids at home, and manage to not feel resentful and stuck for the next 3 months. I want my big kids to have a fun summer break despite their little brother tying us down. They are so good about accepting our situation and staying positive.

I am so grateful for the progress and big steps forward that Jacob is making. These things have been so slow in coming, and to see several leaps forward in such a short period of time is amazing. I'm so proud of Jacob and how he is changing. It feels like some of my hard work is finally paying off.

One Burnt Bridge

2008-06-03T18:24:00.000-07:00

I hate that I can be such an emotionally immature person. I said some things today to someone who I care about that were unkind and damaging, and I am so, so sorry. I don't know if she will even bother to come here to read anymore, but I wanted it to be out there for her, and everyone, to see.

I had some issues, I expressed them without tact and I hurt feelings, and I wish I could take back the last 3 days and start over. I should have been adult enough to talk about my problems with being accusatory or insulting. I wish I could have just kept my mouth shut and not felt that I had to let my feelings fly.

I don't know if we can ever return our relationship to the way it was. I doubt it. I am so angry and disappointed in myself.

I'm so sorry.

2008-06-02T00:26:00.000-07:00

After all my complaining about how Jacob picks every flower he ever sees- look at what my lovely yard is doing now.

There are flowers blooming and budding everywhere, and I am so grateful that it was planted and tended to so beautifully for so many years before we got here. Every plant is strong and healthy and delightful to see.

Thank you to hands who care for these treasures, and to God for creating such delicate reminders of His love.

Watch Me Fly

2008-05-19T09:40:00.000-07:00

I have always been an emotional writer. I have notebooks full of letters and poems and song lyrics that were inspired by love lost and found. My most creative times have been the result of my tender heart cracking open a little. It takes a little tugging on the heartstrings for me to be inspired to write. Occasionally a really happy line or two will break through, but in general you could call me a Broken-Hearted Poet.

I realize that it is easier for me to write about all the hardest parts of autism. A traumatic or painful event and I'm all over getting it out there in writing. I do know that I process the most difficult things by putting pen to paper (or rather fingers to keyboard.) An especially hard day can come to a clean and orderly conclussion when I have written in down and wrapped it up.

But for today, for the sake of showing you, and myself, all that I can see the blessings and rewards of this autism that I cry about, I will focus on how it has made me grow.

*I can go without sleep and function at full rate. This ability has been perfected over 5 years of being up and down at all hours of the night, often not sleeping for more than 2 hours is a row, while still needing to perform all my regular mom-jobs during the day.

*Cut toenails, clean ears, and remove slivers while keeping a light sleeper asleep.

*I am a bonafide pro at making my home Fort Knox safe, 100% child proof, an expression of my unique style, and beautiful all at the same time. You should see how cute my guest bathroom looks after a weekend of painting and decorating.

*I can: smell an overpopping bag of popcorn before the whole thing is ruined (after little hands pushed random buttons until the microwave started), hear the silence that mischief makes, and detour a dripping ketchup sandwhich to the kitchen table before any permanent damage is done. Whew.

*I have a 6th sence- positioning my body to withstand and deflect 110 pounds of force coming at it from any angle at any moment. This one is really impressive. Most victims stumble and fall right over. (Sorry, mom.)

*see the humor in my unique situation.

* I have gained the skills required to make my children's needs known, and how to gently but persistently push until that need is being met.

*I understand unconditional love. Nothing else could have taught me this as well.

My skills keep increasing. Every day they are tested and refined. I can jump whatever hurdles get thrown in my way. I am superwoman.

Where We Live

2008-05-14T23:05:00.000-07:00

It has now been three weeks since we moved into our new house. I'm 75% done with unpacking, and it is starting to feel like a home instead of an extra-large storage unit.

We are all enjoying the doubled square footage. How we lasted for so long in such a tiny place is a mystery to me. Space to stretch out and fit all our possessions feels like a luxury.

We hardly notice the glaringly bright home across the street anymore. It's more like a landmark that an annoyance. (You'll notice it reflecting all of it's teal glory in the window of our home.)

Having the living areas and bedrooms on two different levels makes keeping things clean much easier for me. And if the bedrooms aren't always tidy, at least they are a staircase away.

Jacob's room has, so far, remained food free and clean. It always felt like we were banishing him to a cave in the back of the little old house. Now he has a big, bright place to play and I am so grateful for that.

We have turned the formal dining room into a library, and I am loving having all of my books out of boxes and ready to be taken off the shelf and read again. Someday we may want to turn it back into a dining room, but I hope not. The nook in the kitchen works for me.

Two full bathrooms- one for the kids to use and clean, and the master bath with a large whirlpool tub big enough for Jacob to swim in, and lots of cupboard space for all the first aid stuff, the makeup I seem to horde, and 12 years of mismatched towels. There's also the small guest bathroom downstairs that I have banned my family from pooping in. Seriously.

Chris is oddly thrilled with the in-wall ironing board. He has used it several times already. You'd think I have been denying him wrinkle-free clothes, when the wet-sock-in-the-dryer-with-church-clothes method has made me perfectly happy for the past 12 years.

A double garage. After living with just a carport for what felt like forever, this is a really big deal. We deposited all the boxes in there and have been slowly bringing them inside to unpack. And we keep an extra fridge in there, too. Someday when it is organized I may actually get to park in it.

My kitchen has a beautiful large fridge, a quiet dishwasher, a gas stove, and a convection oven. All stainless steel and 6 months new. I feel spoiled.

And I have a pantry. Beautiful, blessed pantry. All the food arranged for display on lovely little shelves. Making a meal for 5 hungry Jones' is remarkably easier when I can actually see what I have to work with.

The backyard is green and lush and has a big wood deck with 2 levels and a gas BBQ for Chris to play with. Even though it is a regular family neighborhood, we can't see into a single neighbor's yard and they can't see into ours. It is so private, we could go nude in the hot tub if we so choose. (Yep- I said hot tub. :P )

Chris' work is only five minutes away, and he can actually beat the kids home from school. This has never been possible before. Although why he still likes to leave home 45 minutes early to sit in the break room and read the newspaper with a bunch of obnoxious guys is something I will never understand. Whatever. I'm still fast asleep at that hour.

The drive to a grocery store is further than it has ever been, and for us this is a good thing. Less conducive to craving-induced shopping sprees and ice-cream runs. Better for our pocketbooks and our waistlines.

The elementary school is just far enough away that the kids can take the bus every morning, but close enough that I can get there in five minutes if I need to.

I have to conclude that this is a pretty great place we picked out. A quality home. I can see us living here for a good, long time, and that makes me smile.

Here To Stay

2008-05-14T21:17:00.000-07:00

Two years ago, when we were preparing to move back to Oregon from Idaho, Chris and I knew we were leaving behind a good thing.

The job offered to Chris back in our home town was just what he needed to really get going in his new career. The company had a great history, and Chris was thrilled to be chosen from a large group of applicants for the position. We could not pass it up. The higher cost of living and inadequate services for Jacob weighed heavily on us, but we had high hopes that we could somehow make it work for our family. So we left Idaho for the Willamette Valley prepared but wary.

Idaho had a wonderful program for children with autism, and Jacob had been receiving 30 hours a week of combined therapy (PT/OT/ST) and Intensive Behavioral Intervention (IBI). He was also receiving medical care through the Katie Beckett medicaid waiver, a program that would have covered his medical insurance until age 21. Oregon, however, is one of the ten states that does not accept the Katie Beckett waiver, and we would be putting him back on our personal health insurance which would not cover more that 12 therapy visits a year. Not enough to even make a dent.

Over the two years that we had been back in Salem, I had felt real sorrow and regret about giving up the opportunities that Idaho provided Jacob. He had regressed in several areas, and issues that we thought were resolved during the intense IBI program had resurfaced. Financially it had been a strain, the future didn't look much better, and we could not see any solution. I wanted to move back.

But then we were presented with a potential miracle. A program called Children's Intensive In-home Support, or CIIS. This program, if Jacob was accepted, would cover him medically, provide money for respite care and therapies, and help us to make home modifications to encourage his independence and promote safety.

It sounded too good to be true. If Jacob were to be eligible for CIIS, it would more than make up for what we left behind in Idaho. We got his name on a waiting list for an intake interview, and after a painfully long year our turn came up.

The interview to determine eligibility was going to be intense. Our Marion County DD Services caseworker had seen other children similar to Jacob denied. One point away from what was needed would exclude him, no matter how sympathetic the interviewer was to our situation. Acceptance is based solely on this point system, and there was no guarantee that Jacob would receive all the points needed.

Chris and I spent many hours taking notes, making lists, and trying to remember every detail of the past 5 years that we had been managing Jacob's autism. Every negative behaviour, all the times he has put himself or another member of our family in danger, physical limitations. How we have had to modify our lives and routines to accommodate his. The many and creative ways we have made it work to this point.

Cold hard facts- we had to recall them and prepare to divulge them. Every messy and hurtful and embarrassing detail of life with Jacob. And although we know how hard it is every day, how our lives are no where near normal, our compiled lists didn't seem quite long enough.

The interviewer came and spent three hours at our kitchen table. One part of the interview was observing him, and Jacob, who is rarely ill, was home sick that day. Jacob is one of those kids who just wants to lay around and quietly watch TV or sleep when he doesn't feel well. Completely out of character. This was not the impression we wanted him to give her.

We needed the loud, aggressive little boy to present himself. He redeemed himself and soothed our anxiety when, blessedly, he threw up twice in front of her. It was the proof we needed that he was truly sick, and we were not exaggerating his true personality. (And I think I made a great impression when I deftly caught the puke in my hands without a drop hitting any other surface. A talent only a mother will claim.)

It was a very emotional few hours. All the worst times had to be relived. It felt to both Chris and I that we were painting our sweet, innocent child in the worst light possible and it hurt.

We cried, she took notes.

Yesterday, three weeks after that difficult afternoon, we received word that Jacob was accepted. A few days from now he will be assigned to a caseworker, and a new chapter of his life will begin. It is a true blessing, an invaluable resource, 11 years of care that cannot be revoked and far exceeds what we alone could ever provide for him.

And over two years after returning to the green beauty of Oregon, I feel at peace with being here. It was meant to be. Things are looking up. The future looks brighter. I am settling in and calling it home.

Hooray!!

2008-05-01T23:57:00.000-07:00

Jacob got up this morning, went into the bathroom, took off his diaper, peed in the potty, put on some underware, then a shirt and pants, and finished up with his socks AND shoes. Maybe your seven year old does this every day, but it was a first at my house, and it was a great thing to wake up to. Hooray for progress!!

Please Pass The Lemonade

2008-04-30T23:09:00.000-07:00

Weeks of preparation, packing and moving, and I am finally coming up for air. Most of our possessions are still in boxes and our garage is chaos, but we are moved in and happy to be in our new home. The doors have safety locks, the gates are chained, and I can have a small sense of peace in knowing that Jacob is safely secured here.

Tyler and Madison started at their new school last week, and so far Madison has "soooo many friends" and Tyler has "two people that might turn out to be good friends, if they love football as much as I do." We have several kids living on our new street, which is really great after being the only family with young kids in the old neighborhood. Since we plan to stay in this home for a good long time, I'm very hopeful that my kids will be happy here, and make some lasting friendships.

Jacob spent the weekend of the move with Chris' parents. We knew it would be so much easier to get things done if we weren't chasing him around and attempting to keep him from unpacking boxes. What we did get packed we had to hide or disguise, knowing that it would make Jacob very worried and anxious. His teacher had made us a social story book with pictures of the old house and the new house that was meant to prepare him, as much as we could, for the transition and we had been looking at it with him for several days prior.

When he left home on Friday to stay with grandma and grandpa, the house looked pretty much like it always did. Then on Sunday evening we picked him up and took him to the old house. He seemed a bit surprised to walk in and see it was completely empty, he ran to his bedroom to see if his stuff was there, and then ran to the front door without looking back, ready to leave. I was thrilled at how smoothly it went.

We got in the van and waved bye bye to the old house, and drove off across town to this new one. Jacob got out of the van and ran right up to the front door and inside, and spent the next two hours running from room to room, out to the backyard, up and down the stairs, exploring the new place. We had set up his bedroom first thing, wanting to make at least that part if it feel consistent and comfortable. The whole process was surprisingly simple. We are blessed that Jacob adapts so easily to change because so little with him is ever easy.

It is so wonderful to be able to spread out a little bit. We doubled our square footage with this purchase, and it was about time. Five big people squeezed into 1100 square feet was a little too close for comfort. Its funny to me that we can't just yell for each other any longer- when we need somebody we actually have to go looking. This home was really what we were looking for. We are nowhere near a busy road, in a nice quiet neighborhood with just the right mix of young families and older people, and just five minutes from Chris' work.

Along with a new house come new problems. Things we hadn't thought much about we are now kicking ourselves for not preparing for and we are hurriedly trying to find solutions. Jacob has already discovered how fun it is to throw things from the top floor over the railing, and has tried to climb onto the roof from the little deck off the master bedroom. He has also managed to pick every flower in the yard, and break the cover to the hot tub by jumping on it while I ran around in circles trying to get him off. The fridge has water and ice in the door, and I thought this would make my life a little easier because Jacob could get his own drinks. But he has decided it is his job to be filling up and passing out cups of ice water to everybody several times a day. The floor in front of the fridge is never dry. We have all slipped numerous times.

But we will adapt. We always do.

Tonight when I was unpacking boxes I came across a box full of family photos taken six years ago. When Tyler and Madison were still preschool aged and learning new things every day and sweetly driving me nuts with their "why" and "how" questions and Jacob was still a typical child. He was darling with his white-blond hair and big deep eyes, and about 90 pounds lighter. Chris and I sat on our bed and looked through these pictures, and talked about what, if anything, we could have done back then to keep Jacob out of autism. We had been so happy with our little family. Our future seemed so simple. All we needed was each other, and we had big dreams.

We imagined our sons as best friends and playmates and defenders of their sister. A house full of friends after school. But today I can't even picture a life with the freedom to leave the front door open to let in the breeze and the neighborhood kids. Its deadbolts and padlocks and alarms. And only the brave kids come over more than once. We don't plan for the time when we have three teenagers and days full of activities and a million places to be. We have given up the idea that we will be Empty Nester's with a comfy RV spending our time travelling around to see the country and our grown children, wherever they might settle down.

Me- a person who never wanted to be normal and liked to stand out and be different from everyone else and fought so hard for independence- and now I dream of being an ordinary mom of a standard family in an average house with typical children who give us regular problems that I can compare with other fantastically ordinary mothers. These simple things that families all across America take for granted and that would I give anything to be able to do.

We have given up normal. It walked out the door when autism walked in.

My kind, strong husband cried tonight. Over the loss we have come to accept. Over the loss of a life we had dreamed of as a family of five. We held each other for a while, crying together and knowing that we are the only two people who know how this feels. But life doesn't stop, even for parents who are trying to reconcile their broken hearts and shattered dreams, so we dried our tears and stood up and got back to work.

Now its late, everyone else has been asleep for hours. I am sitting in my big new bedroom, in my lovely new home, listening to the snores and sleep noises of the people I love. And I remember that I AM blessed. I never doubt that I am loved by these 4 amazing people. I have been able to learn and grow and discover things about myself that an "ordinary mom" might not have the chance to develop. So maybe I've created a self-fulfilling prophecy. Because I am nothing close to normal, my life is far from typical, I do stand out, and isn't this what I wanted all along?

I have to make something sweet with the lemons I've been handed. Love the sour because it makes the sweet seem even sweeter. Alter my dreams to fit my reality. And I will, because I am resilient.

Heartache

2008-04-16T08:30:00.000-07:00

Some days it just really pulls on my heartstrings to send Jacob away on the little yellow bus, watching his sweet chubby face through the tinted window as they head down our street and off to school.

You'd think I would be used to it by now- it has been five years of Jacob leaving home for preschool, kindergarten, and now 1st grade. Despite the fact that all these years have gone by, each time it is still like sending an innocent toddler away everyday, out into the big, bad world alone, without me to protect him.

I went to his school today, to register Tyler and Madison. Our move next week puts all three of them in the same school for the first time. I feel some comfort knowing that his big brother and sister will be there with him from now on. Defenders, if he ever needs them. My children, siblings, all born from love and with the same carmel skin and soft brown hair, yet miles and miles from being the same.

While I was there I stopped to watch him for a few minutes, through a small window in the classroom door. He was sitting at his desk with an aid across from him and it looked like they were working on IEP goals. I saw her lifting her arms and wiggling her fingers in the air, trying without success to get Jacob to imitate. She gently nudged his chin up, so that he was looking at her fingers above him, and finally he half lifted his arms, and slightly moved his own fingers.

The lovely aid smiled and clapped and I saw her lips saying, "Good job, Jacob." And while I was pleased to see her kind and patient interaction with my son, my heart felt a little heavy. Raising arms, wiggling fingers- so basic and simple. But for my child it is something that must be coaxed out, praised, and rewarded, and it felt like watching someone train an animal.

Does that sound cold? It feels cold. All these years, five since he first started in the Early Intervention preschool. Hours and hours of therapy and discrete trials, and it is still a struggle every single day to get him to respond to something so menial.

When Jacob got home today the note in his backpack said he responded once to the "my turn, your turn" trials. That is what I saw through the window. The one success. The three seconds where he seemed to understand what was being asked of him. The half-effort he gave to accomplish the task that means nothing outside of his classroom. Raise your arms, wiggle your fingers, receive a smile.

How long must we keep doing this? For the rest of his life? For the rest of mine? I have grown older than I should since autism came, aging and tired beyond my 32 years. And Jacob has gotten no where. I feel like I am two steps away from being the one who rocks and moans and ignores the world as it turns around me. Would that be safer? Less disappointment, less pain? Would being autistic protect me from what hurts?

I love this boy. So much that it seems he is a part of me. My heart. My bleeding, breaking heart.

The Choice They Made

2008-04-04T23:02:00.001-07:00

Sometimes I forget that the people who work with Jacob every day have made a choice to spend their time with special needs kids. I am so grateful that they have. It has to be one of the hardest jobs.

I was at an IEP meeting a few days ago with Jacob's teacher, a school district consultant, county DD services, speech therapist, the principal, and a few more professionals. I went in ready to stand my ground about what I think Jacob needs. (I seem to always jump to being on defense when it comes to situations involving my kids.) As has happened before, when I sat down with everyone and we chatted for a moment, and we shared funny stories about my son, I heard genuine affection for my little boy in their words and voices. I was reminded that they chose this, and I was filled with gratitude. The meeting went well.

A person goes into this type of career because they have big hearts. Because they are accepting, want to help other human beings, and open to challenges. And often because they have someone in their family or have had personal experiences with people with special needs. These teachers and therapists and aids and advocates truly care about the education and success of these children- no one is forcing them to stay.

I did not choose this. It was thrown at me. I've cried and mourned (still do) and eventually come to accept and even love autism. But I did not choose it. Its hard. Emotional, exhausting, messy, isolating. I could not do this on my own 24/7. I'm fortunate to have a husband who takes on a lot of the heavy load himself, and always understands and supports me in caring for our son. As much as we learn and improve our skills in managing autism, even the two of us combined aren't enough for Jacob.

Today I am feeling gratitude to the people who care for, teach, and enjoy my son as he is, and for accepting all the tough stuff that comes with him. I need these people, Jacob needs these people, and our world turns a little smoother as we all come together with the common goal of making Jacob's life the best it can be.

One step forward, two steps back.

2008-04-03T10:59:00.001-07:00

Jacob never saw a box that he didn't unpack, remove the tape from, and completely destroy. This happens over and over. When ever we get a package in the mail we have to hide it, or the intended receiver will never see it. Jacob will sneak it off to his room and have it open and flattened before we realize it. We have not put out Christmas presents out for about 5 years now. We keep everything hidden away, with nothing under tree, until right before we are ready to open them or Jacob will not stop obsessing about them.

And it's not just cardboard boxes. If there is a plastic tote with a lid on it, you can bet it's going to be opened and upturned within moments of Jacob spotting it. We have had to become really good at hiding and disguising anything we don't want him to get into. He will pull chairs into the closet to get at a box from the top shelf. He has dumped more boxes and broken more contents than I care to think about.

Add to all this that fact that Jacob hates packing. If I have to pack for a trip, he freaks. He hates it when I am gone, and he knows what suitcases are all about, and he will unpack my stuff and put it away if he feels worried about me leaving. His sense of security is based on things being the same and predictable. So packing up to move is a major stress to him.

So preparing to move (in 18 days) is incredibly stressful. It is taking all my time and energy to pack, then hide or disguise all the boxes. We don't want to rent a storage unit, so I think we are going to end up moving without really packing much at all. Just transporting possessions from one house to the other in a weekend.

The good side of preparing to move is getting rid of all the stuff we really don't need. I have already taken four trips to Goodwill, and I anticipate many more. It feels kinda good purging things.

Forgive me for being scarce lately. Moving is taking all my time and draining me of creativity. Three weeks and I'll be back to my normal blogging self.

Movin' Out

2008-04-02T21:26:00.000-07:00

We are moving in 23 days. After a year of searching, we found a home that will work for my family. Every home considered for the past 12 months has had to pass a rigorous test to be considered, and the one we are buying comes the closest to meeting every requirement.

Safety. We must be able to completely contain the home and yard. therefore the yard must be 100% fenced, with gates that can be padlocked 24/7. I know a fenced yard is important to most families with small kids, and in our case, it is an absolute. It must be fenced now, before we move in, because even one day of worry and fear about Jacob escaping when my back is turned is too much. All exterior doors must lead to fenced yard, or be fitted with double-sided keyed locks. All widows permanently closed and locked.

Space. We hope to be in our next home for a good, long time. It needs to be able to fit us while our kids are growing and still be comfortable. Jacob is a big, big kid and our home must have a large bathroom where we can help him with potty and hygiene. It needs to have 4 bedrooms- Tyler and Madison really need to be able to have their own space for privacy and a place to keep their stuff safe from Jacob, who breaks or otherwise ruins nearly everything.

Location. Specifically in regards to busy streets and bodies of water. Jacob has no fear or understanding of danger, and running into the street is a constant concern. If he is able to get out of our home, despite all the locks and security we set up, he runs. Runs until he can't run anymore, and without regard to where he is going or what is happening around him. He also loves water. In the past when we have taken him to pools and to the ocean, he walks straight in, totally unaware of depth and at full speed. He'll walk right off the edge of a pool and into the water. And he can't swim, so he just sinks until somebody jumps in to save him. But he has no memory of this (I assume) and will do it again and again. So obviously we don't want to live on a lake. Or next door to someone who has a pool that is not secure, or near a creek or backyard pond. So Chris and I really have to survey the area around the home and know every detail about the neighborhood.

There are other things- what school will a move put Jacob and the other kids in, and do they have special programs there for Jacob? How far is the fire station and police? Can the little yellow bus make it in the driveway to pick Jacob up? Is there a pantry, so we can lock away all the foods that Jacob obsesses over and eliminate that fight? Is the master bedroom near the room we will put Jacob in, so that we can monitor him at night? Is the bathtub big enough for a child who might be 6'2" and possibly still taking baths? Is the backyard private so that we don't have to worry about Jacob running out to play naked or be afraid that some neighbor will see that he is nonverbal and try to take advantage of him. (A real fear for me.)

So the home we have picked out meets most of these criteria. It's not perfect, the yard is smaller than we would like, and it's only 3 bedroom so we need to figure out how to add a fourth. But it is in a great area, in super condition, and all the homes around it are well taken care of and it should increase in value. Jacob won't have to change schools, and Tyler and Maddie will actually be able to go to the same school as him for the first time. They are excited about that.

We are really praying that there are no bumps in the road and that everything works smoothly to close on the new house. So now comes the packing. I'm gonna write about that challenge in a whole other blog.

Who Was That Masked Man??

2008-03-25T12:52:00.001-07:00

Jacob Was Here.

Happy Birthday

2008-03-25T10:00:00.000-07:00

Jacob turned seven on Sunday. He had his birthday on Easter, which I thought was pretty cool, seeing as I was born on Easter and have had my own birthday on Easter several times in the first week of April. It didn't mean anything to Jacob, except a little more candy. The day was bittersweet. He's still at about 18 months developmentally, so he enjoyed it like a toddler does, ripping open gifts and liking the attention but not really understanding why he was getting them. We kept saying "Yay! Jacob's birthday!" "Jacob is 7!!" just in case something is sinking in.

Tyler and Maddie are in California for Spring Break, so it is just Chris, Jacob and I for the past 6 days and 5 more. Jacob is very different when the big kids are not home. Much calmer, less aggression, more affectionate to Chris. It a tough situation. We love seeing this side of him, but feel badly that he seems so affected by his siblings in a negative way. A lot of it is just the high energy and activity level when all three kids are home. Kids tend to feed off each other, and with Jacob it is the same things but magnified. It's really hard as a mom to know that your special child does better when his brother and sister are away. It does give Chris and I some reassurance that maybe when it is just the three of us at home Jacob will be easier to manage. But then there's that whole issue that he will be 16 and most likely 6'3" like his dad. So it won't really be the same at all.

It feels like so much about our lives is up in the air and unknown. We don't know what things will change in Jacob's life- if he will speak or learn to use another form of communication, will he ever be potty trained, will his health be affected by his poor nutrition and lack of variety of foods. And since Jacob's future is so unknown, Chris and I leave ours unplanned. Will he live with us forever? Or will he live in a group home? And which do we want for him? Will we ever be able to travel with him- its impossible right now, and I can't imagine how it will get easier. But Chris and I had dreams of catching up on all the traveling we haven't done- I want him to see London, he wants to take me to Thailand. Right now it feels like I'll never be an Empty Nester, and never get to see any more of the world than I already have, which isn't much. Really every day is an unknown. Some days with Jacob are peaceful and enjoyable, some days leave us all crying and hurting and afraid of the future. It is such a roller coaster.

Today is good. Jacob is happy, currently coloring and watching Scooby Doo. I've had time to catch up on emails and dishes,and now I'm waiting to hear back on an offer we made yesterday on a new house. (Keep fingers crossed for us, please.) Some days like this, when it is just Jacob and I at home all day together, I forget that he is not a typical seven year old. He's just Jacob, my youngest boy, a child of God. An artist and a lover of flowers. Adventurous and brave, funny without meaning to be. I love him so much. When it gets hard, when he's hurting me or himself and seems inconsolable, all I need to do is remember his smile and shining eyes and see the dandelions wrapped in tissue he gave me yesterday, and it gives me perspective. He's my son, given to me to care for and love. I can do it.

Happy Birthday, Jacob. I love you.

Counting Blessings

2008-03-19T21:48:00.000-07:00

Haven't done one of these for a while. It always makes me feel better.

*Looks like we have buyers!! If all goes as planned *fingers crossed* than we will sell this house in 45 days.

*With no school for the next 10 days, Jacob and I can sleep in together. How I love cuddling with him in the morning.

*Went to book club tonight. Had a great discussion about The Hiding Place. I really enjoy doing this every month with such funny, bright women.

*Only 3 more days until we are down to 1 dog again. Little yippy one is going back to Arizona.

*Took a few great pics over the weekend.

*Jacob drew Plankton on his bedroom door today. It had been too long since I last found a little happy art suprise.

*Drove 20 miles out of town today just to get the best fried sushi ever. Delicious food, pretty drive, music therapy for me. Nothing heals like rockin' in the car. :)

*I see spring!! Pink never looked better.

Stuck

2008-03-18T18:01:00.001-07:00

If Jacob is not at school he is at home. Over the past year we have gradually reduced taking him places. First it was church, then grandma's house and shopping, and now we can't even take car rides with him. That was my last hold out, we could at least drive around together with him safely buckled in. Sometimes we'd drive around for hours, listening to music and exploring the area. Now he escapes the seatbelt and climbs over the seats, tries to mess with the doors and windows, attacks Madison in her seat, and puts us all in danger. I can not get him back into his seat if he protests, he's too strong. So we stay home. Everyday. No variance.

Being confined to home so much makes me anxious to find somewhere to live that meets all of our needs. Our current home has been fine for the past few years, but with just 1100 square feet and 2 bedrooms it just doesn't work any longer for our growing famly. Tyler and Madison have been sharing a room and they really need privacy and space.Chris and I are searching every day for a home that will work for us, one that has the space that we desperately need for Jacob. We don't have lavish dreams for our home, just simple desires to make our home life safer and healthier and a place where we can be comfortable.

Even when it comes to finding a home for our family, Jacob's needs are placed above everything else. Our backyard provided no space for playing, yet Jacob must be outside getting exercise and letting out energy for a few hours a day. A safe and secure yard for him to run and play and explore. A room inside that is used specifically for the tecniques we learned at the Son-Rise training, for teaching him and playing on the floor, and big enough for sensory equipment. We had dreams of a log cabin home with wood walls and beams, but with the amount of destruction Jacob does to out home and possessions, that would be a disaster. We need a kitchen that has a door we can close and lock to keep him out of the food. We used to have dreams of living on a few acres. But that was vetoed once we figured out we need to be able to know where Jacob is 24/7, even in the yard we have to be able to see him and make sure he is safe. It must be completely fenced and padlocked. Nothing in the yard can be movable because Jacob will use it to climb over the fence or onto the roof. No way we could ever have a pool or a pond, he has no fear of water but can't swim. Even play structures can be dangerous. Really the only option is space to run and a swing set. But homes with big lots are expensive in Oregon, and we can't afford it. And we have been looking, believe me. I know, literally, every home available in the local market. We have looked at the oldest homes that are fixer uppers, just so we can get the large space, but a year of looking and no success. We have scoured craigslst and the MLS for a home that fits our requirements on the inside, but can't commit to something with a postage stamp sized yard. Jacob need his space, and so do the other kids. That one thing we can't compromise on. It's not negotiable.

We are in the middle of middle class, a difficult place to be. We make just barely too much money to qualify for special loans and mortgage programs. And the homes that would work for our family are right above our income level. We don't qualify for medical and therapy help for Jacob, but we don't make enough to pay for these things on our own, so he misses out on things that could possibly help him. Everything is just out of our reach. And if you read my "Workin' It" blog, you know that I try really hard to add to our family income, but can barely make a dent. $500 more dollars a month is not much, but if I could earn that much we could afford the type of house we need. Comfort and safety is all we ask. These things should be attainable for every family. I know there are other families like us out there who just want the basics to get by, and are struggling every day to get them.

I promise to be hopeful and optimistic again tomorrow. But for today, I seem to have misplaced my rose colored glasses.

2008-03-18T17:22:00.000-07:00

Today has been so hard for me. Tyler and Madison are leaving in a few hours to go to California with their grandparents for Spring Break. They will be going to Disneyland for the very first time. They have been planning for this vacation for about a year, and the kids could not be more excited. It is so wonderful that Chris' parents are taking the time and spending the money to take the kids on a 10 day road trip. The four of them are going to have so much fun.....

Without me. I feel so heartbroken that this isn't something we are doing as a family. I have been trying to hold back tears all day. Disneyland- I want to be there to experience it with my kids. That's the way it should be! Its part of the American Dream! They will remember this trip for the rest of their lives and it feel sick that it's not with Chris, Jacob, and I.

But there is no way that we could afford it right now, and even if we could the real issue is that it would be impossible to do it with Jacob. The noise, crowds, lines, etc would be too much for him. And the irony is that he's the kid who loves all things Disney. Much more so than Tyler and Madison ever have. He would be thrilled to see his favorite characters in life-size and go on the rides. It would be like heaven for him, I'm sure. But at the same time, he would be in sensory overload and it would most likely be 4 days of tantrums and crying and frustration for him and for both Chris and I.

Jacob is seven next weekend. He's at the perfect age to enjoy Disneyland. But I doubt he'll ever go. Unless we had lots of help and extra hands, which is unlikely to ever happen. No one ever offers to spend time with Jacob. He's hard, I don't deny it, but he's a child and all children deserve to have fun and friends and room to run and play. He has none of these things. I know this is just the beginning of places and experiences that my other kids have that Jacob never will. I am mourning this so deeply right now. Part of it is for me- I wish with all my heart that we could do special things as a whole family together. Nearly all of the things that "normal" families do together- camping, movies, museums and the zoo- in our family all these activities are done either with just one parent, or with grandparents.

Greater than my own disappointment is the sorrow I have for my child. My little boy who has never read his first word or written his name. Never ridden a bike or played basketball in the driveway. Never been invited to a birthday party or play date or even had a friend. My son who will may never grow up. He doesn't even know what he is missing, but I do and I hate it.

I'm mourning the family I thought we would be. The places we would go and adventures I wanted to have. Disneyland is only the beginning. Tyler and Madison are going to keep growing up and living life and the gap between them and their little brother will get even wider. We will continue to have to choose if dad or mom goes along with them. Never the five of us together.

In a little while I'll send Tyler and Maddie out the door with a kiss and a tight hug and tell them to have lots of fun. Remind them to take lots of pictures and call me at bedtime. We'll blow kisses to each other as they drive away. I'll turn to Chris and ask him to hold me because he is the only one who truly understands how bittersweet this moment is. Then I'll go find Jacob and kiss his soft head and hug him if he will let me. And I'll finally be able to let go of the tears I've been building up all day.

There's No Place Like home

2008-03-17T14:42:00.001-07:00

I am writing from the airplane on my way home from a whirlwind trip to Atlanta. And when I say whirlwind, I couldn’t be more literal. Everybody has heard about the big tornado that touched ground in downtown Atlanta on Friday. When it hit I was on my way into the city to meet up with some friends at Hard Rock Café. It hit at 9:30pm, while we were driving there, and when we got to the downtown area it was chaos. Emergency vehicles everywhere, debris littering the streets, streetlights and power polls down. When we finally made it to a parking lot, after traveling only a few blocks in an hour, there was an enormous, at least 20 foot long, piece of twisted metal right next to where we parked our car. I can only imagine the damage and injuries if there had been vehicles or people in it’s path.

Shortly after my two friends and I got to Hard Rock Café, all the surrounding streets were closed to traffic. Several large buildings around us were out of power, but somehow HRC was spared . So we sat down to eat and visit, and when we finally left the restaurant at 2am, we were able to see more of the aftermath of the tornado. There were broken windows in all of the high rise buildings, bent and twisted billboards and street signs, and a lot of curious people walking the streets. I didn’t know the scope if the damage until I saw the news the next day. The area I had seen was mild compared to other parts of downtown. It was pretty amazing. On my drive to the airport this afternoon, I went past some of the worst hit areas, and saw the incredible destruction and mess that the people of Atlanta have to deal with.

The reason for my trip to Georgia was to attend the wedding of my uncle, Steven, who is only 2 years older than me, and was more like a best friend or brother when we were kids growing up in a small Arizona town. We had many adventures together on the beaches of Lake Powell, roaming the streets of Page, getting ourselves into lots of mischief. My favorite memory with Steven is when we were 8 and 10, and we decided to run away from home, along with 2 other cousins. I think Steven my have gotten in trouble, but the rest of us were just running away out of loyalty to him, and our love of adventure. I lived a few blocks form a small airport, so we walked there, with our backpacks full of food and books and flashlights. There wasn’t much security at the airport, and we were able to get into the lot where the airplanes were parked without any detection. We didn’t plan this beforehand but we found ourselves trying all the small planes for any open doors. And to our surprise and delight, we were able to find one that was unlocked. The four of us climbed inside, looked around, made ourselves comfortable, and then ate all the candy that the pilot had stashed in a console. We immediately felt badly for stealing it (and seeing the Bible that was stored in the same console was contributing to our feelings of guilt) and got out of the plane and ran for the desert. It was only another 2 hours or so before we got bored of being runaways and went back home. We all ended up confessing to our parents about the break in, and while I got grounded for a week, Steven, who is the youngest of 11 children and we know how easy youngest kids have it, was just sent to bed early.

Steven and I had lots of good times growing up together. When I moved away to Oregon in my junior year of high school, we slowly lost that close bond. Distance and interests changed. It’s been 15 years now, and while I love him and appreciate all the childhood memories we share, I’m a little sad that we barely know each other as adults. I guess that is just part of the cycle of life. But it was really nice to spend time with him this past weekend and be reminded of how great he is, and how much our history together plays in to who I am today. Being with him, and with all the other family that made the trip to Atlanta for his wedding, felt so comfortable, like going back to my childhood home.

Right now I am flying over Arkansas, it’s getting dark, and I still have 5 hours and a layover in Denver before I get home. Going away on vacations is always bittersweet for me. I really need some time away from the stress of raising a family, and a break form autism and all it’s demands. I love traveling to new places and all that entails. Sleeping all night long with no interruptions from Jacob is a definite luxury, and only having myself to get ready in the mornings is awesome. But there are some things about home that can’t be matched no matter where I go. Four days without cuddling with Jacob is tough for me, and knowing how hard it is on him when I am gone, and how long it takes to get back to normal when I return. Not having Chris right there to hold my hand and explore alongside me and be my other half makes me miss him so much. Tyler and Madison make everything more fun and have such curious spirits. I wish we were in a position that allowed us to travel to have adventures all together. So while I am seeing new sights and eating new foods and meeting new people, and enjoying it and absorbing everything, always in the back of my mind is the sorrow that we may never be able to have adventures like this as a family of five. I used to dream, before autism got so big and so hard, that we would travel all over, see the entire country and many others as well. I’m starting to let this dream go, like so many other that I have had to release.

In 5 hours I’ll be home. With the best people I know, the ones who love me no matter what. The family that laughs with me when situations are so hard that it’s the only thing we can do to get by. My husband and children who share the heartache end worries, and the successes and joy of simple things. I think I could travel the whole world, and meet fabulous people and see amazing things, and nothing would compare to the people who are waiting for me tonight. There’s no place like home.

Accentuate the Positive, Please

2008-03-10T23:18:00.000-07:00

JJ's teacher and I have this little notebook that we write notes to each other in. JJ carries it back and forth to and from school in his backpack. It's a pretty good system. I can ask questions about his day, she can tell me about his progress, behavior, etc. It works to keep us both on top of changes being made, medications taken and how they are affecting him, and if they need more snacks or diapers for the classroom.

Occasionally his teacher and I will get our signals crossed. Its easy to misunderstand the emotion or intent behind what's written, and maybe I don't use enough smiley faces, which could rectify the problem. (Gotta love emoticons.) :) But a phone call generally clears everything up.

Tonight I pulled the notebook out of JJ's backpack, and sat down to read and catch up. The entry today was a particularly discouraging message. it read, "JJ pulled out all the stops- continuous disruptive behavior, running around all day- silly and hitting- wanted to lay on table all day. No stars in bathroom."

We get these kinds of message often, but for some reason it hit me hard tonight. I was feeling like it has been a really long time since there was anything positive written in his little behavior book.

"Silly, uncooperative behavior began around noon. Very loud and pushy behavior all pm."

"JJ only wanted to swing this am during work time. He did not get to because he didn't work hard enough. He was unmotivated and I couldn't find much to motivate."

"Very uncooperative this pm with lots of hitting."

As I read through the past few months, I did see several entries that were positive. "Compliant today." "Cooperative and happy today." "Had fun coloring." "Seemed calmer this am."

In my mind, on the days when he gets a good report, he's like a little robot responding to cues. No personality, all trained monkey. And on the days where he is naughty? I see curious and happy and funny and active. That's the JJ I like. Sure he wears me out and a lot of things are difficult, but at least I can see the little boy that's in there somewhere.

If i am ever in a position to send write little notes to a mom like me, this is what I'm going to say, "He really wanted to run today. I got in my exercise!" Or, "I sure saw his independent streak when he " "He kept turning on the water, he's learned how to show us he's thirsty. Yay!!" "What a little artist you have! He drew Spongebob on the wall. But don't worry it came right off. :) "

It's easy to focus on the characteristics that typical kids have already experienced during the terrible twos (because, really, that is where he is at developmentally) as disobedience and non-compliance. But if you always do that, you will miss the humor and determination and the fun that's bubbling behind his eyes.

I'm grateful to everyone who works every day to teach and care for special needs kids. They have a difficult, often messy, usually thankless job with poor compensation. But imagine the happiness if they could see these special children more like angels, and less like untrained animals who need to be tamed. Let a little noise come out without shushing. Let him dance on the table if it makes him feel good. Brake the rules a little. Accentuate the positive, please.

I Win

2008-03-10T00:43:00.000-07:00

We all know somebody who is a "one-uper." You know the kind- tell them about a friend of yours who *gasp* just had a 12.5 lbs baby, and they tell you about their cousin who had a 15 lbs-er. Mention when your daughter broke both her wrists at once, and you'll hear all about when their kid was in a body cast. You don't start the conversation intending it to be a competition, but it always ends up feeling that way. Fun.

I was reminded of this phenomenon today at church. CJ and I were sitting next to a lady who started asking us about JJ. It seemed innocent enough at first. The woman said she noticed JJ wasn't with us today. (He stayed home with a sitter.) She asked if he went to school. Yes, we said, he goes to school and is in a special classroom for kids with severe developmental delay. Oh, I know all about that, she said, my son has adhd and couldn't sit still. He had to take medication to calm him down. Not exactly the same thing, but I let it slide.

She said she had noticed us struggling with keeping him quiet. Yeah, we said, he doesn't talk but he sure can be loud. Then she told us about how her oldest son was "slow talker" too. Um, I thought to myself, your child who didn't put a sentence together until he was two and a half is on a totally different plane than my son who is two weeks shy of seven, SEVEN, and says nothing. NOTHING. But I didn't say this to her.

Then the kicker: "I had a very rebellious child who got herself into lots of trouble, and I know that God sent her to me to test me. God must have really wanted to humble you to send you your son." !!!!! Did I hear her right?? Eye contact with CJ tells me Yes, I did. Did she even realize the insult? Apparently CJ and I were walking around thinking we were the shiz with our overblown egos, then we had JJ. That must have knocked us down a few notches. A kind of backwards one-upance. She comes out better than us, somehow.

Its not a competition. There's no "my autism is better/worse than your autism." I have to believe this woman that sat next to me in church didn't mean to turn a friendly conversation into a contest. No intent to be insulting. I'm sure she walked away completely unaware of the impact her words had on me. (And absolutely unaware that she'd keep me up till 2am blogging about it.)

I have a far different view of "why" JJ is my son. And its not because he's the needle that pooped our inflated heads. It has to do with what was meant to be. About the way our puzzle pieces fit together. Acceptance, creativity, patience, tolerance, kindness, unconditional love. These are the things JJ has encouraged in us. It has nothing to do with bringing us down and everything to do with lifting us up. I win.