Here To Stay

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.