Wednesday, April 25, 2007

Autism Is Holding Me Prisoner

It is now 6 weeks since JJ has been to school. I am a prisoner in my own house, subject to attack by a my 105 lb six-year-old at any time. He is the absolute king of our home right now- and it is very stressful and difficult. We have to alter our lives/schedules/plans/sleep to work around him, to avoid a fight that we can't win. This is due to aggression issues, attachment to me, poor sleep habits- and totally magnified by the fact that there has not been a consistent teacher or aid in his kindergarten classroom for the majority of the school year. The teacher (who was actually very good) decided to abruptly leave several months ago. Hello!! these are the most severely physically and developmentally challenged kids in the school district!! They need quality teachers and consistency!! Instead it has been months and months of disorganization, and these poor kids are very affected. The real fight everyday is getting him onto the school bus. I can't do it any longer. He is too strong- and he uses his muscle and weight to fight me, bite, pull hair, kick, punch- and I have to give in. There have been a few days that CJ has stayed home and manhandled JJ onto the bus ( and ridden with him all the way to hold him in his seat) but he can't continue to miss the 3 hours of work. I have had a few other people come over in the morning to try and help me, to no avail. This child has all the control.

Two weeks ago I was able to convince JJ to get in my van, and I drove him to the school. I knew I wouldn't be able to get him out and into the classroom, so I parked in front, left JJ freaking out in the van, went in, and asked the current substitute teacher for help. She immediately went into this speech about how "they can't be expected to do that every day." Hello- JJ hasn't been to school in 4 weeks, I ask for your help with this one thing after weeks of my messages and phone call not being answered, and no other solutions being offered, and you won't help me?!? Yeah- we got in a fight. And she never sent anyone out to help and JJ and I eventually drove home. He wins again. She was completely wrong- and I made some calls.

Today the principal phones and says that JJ has "missed 10 days of school, without reason or explanation, and he will be dropped from the school district records on the 11th day." HA!! Today was actually day 30. They really know whats going on!! I have talked to the counselor, two aids, the lead classroom assistant, autism specialist for the school district. They are all aware of the amount of school JJ has missed, and know that I do not have any solution. I obviously need help. No question about it. They have not come to me with any solutions, have not called or sent home notes. Today I finally had a meeting with a friend-of-a-friend who happens to be a new specialist over the DLC classroom at this school. She was the first person in this whole two month drama to admit that maybe the school has been neglectful to us, and to JJ. That the classroom was a negative place for several months, and that I deserve more help and so does JJ. She laughed at the fact that JJ was denied a 1:1 aid. I've been laughing (on the verge of insanity) at that for 8 months. I have high hopes that maybe something is going to start to happen.

Life with JJ isn't all bad. It gets to feeling that way in the heat of the moment, but he wins us over to make up for it. He's my child, and I adore him. He's an artist. We enjoy interpreting his drawings everyday. And when he's in the mood for it- he's the best cuddler ever. He loves to wrestle and play, and he has a great laugh. He is so fun to observe, we get a good giggle at some of his mysterious antics. He's a lot like a two year old- with an extreme dose of the terribles.

I have been worrying a lot lately about TJ and MJ. I feel like I miss out on a lot of important times with them, because JJ requires so much attention. He will physically protest if I try to be alone with one of the other kids. We have to skip out on events, I have had to stop volunteering in their classrooms, they have a hard time finding space to have quiet to study or just be alone. JJ is into everything, attacking everyone, demanding attention. I have reason to think their school work is suffering lately. I feel so guilty about this. MJ has a big project to do in a few weeks, and I have not spent any time working with her. And she is a kid who needs moms help in focusing and studying. TJ does well on his own as far as school goes, but he needs more one on one time from CJ and I. That is a big deal to him. I'm failing both my big kids. They need someone to help them study- like a tutor or at least a mentor. It's what I would be doing if I could. I think that would really benefit them both. But really it's a dream- we can't afford anything like that. The big kids just get left behind as usual.

I actually had to quit my pt job a few weeks ago. How could I leave the house? It wasn't much- I have protested the book trashing on here before. But it was money that we needed. Money that we used for gas, for school activities, for treats. Now we are down that money each month, and I can feel the strain of it. I feel like I have no options for earning anything at this point. I believe that my place is here in the home with my kids, and no one could love them or know them better than I do. But working a few hours a week was a break that I really, really appreciated.

This is all I can write for now. Too much time spent thinking about and dwelling on my latest struggles will drag me down. But I have so much more I need to get out there.

Catch me if you can-


AmberL said...

What a warrior you are. I commend your patience and LOVE for your family. I can only hope someone can step in and help you out. You deserve it and so does JJ. I send my love and comfort to you.

emlouisa said...

I love you, AJ. I'm so sorry you guys are going through this. I'll keep you in my thoughts and prayers.

Aunt Sandy said...

AJ, you know that you are admired and loved by everyone who knows you. Who knows why you were chosen for this difficult calling, and although you think you are failing your older kids, it is probably quite the opposite. Your example of patience and love has to go far. You can only give so much, and they will understand that. If you are doing the best you can (and no doubt that you are) than your kids will be taken care of--a loving Heavenly Father wouldn't have it any other way. I wish I lived closer and could help, but know that you are in our prayers.

The Mathews Four said...

Oh AJ, I love you and wish there was something that I could do to help you. This sounds so repetitive but I am so sorry that things are so hard for your family right now. Just know that you have a lot of people thinking about you and praying for your family and also that there is someone in the school district that will take the initiative and look out for JJ's best interests. Hang in there.... I love you!

Darci said...

Girl I admire tou. I am so sorry that you are going through this. I wish there was more help for you. I worry that as he gets bigger the harder it will be for you. I pray that the school shapes up.

Annette Lyon said...

What a heart-breaking post--and a difficult situation to live with. My sympathies go out to you. I hope you and your son can get the help you need.