Wednesday, June 18, 2008

Chet's Journey part 4

It occurs to me that despite my efforts to keep this as chronological as possible, I have not included some key things. For instance, when we began homeschooling it is important to note taht we did not focus soley on his academics. They received a high amount of attention because he is very intelligent (in fact we found he was being intentionally school at a grade 5 level at grade 6 in the inclusion class. This was because academically he was the brightest student in the class and they had no way to use anything anymore advanced due to the educational deficits of the other students. He made up the grade 5 year AND completed a full course load of grade 6 in the first 1/2 year we schooled him at home.)

We worked a lot on social skills. I don't think we called it anything that fancy. But we practiced how to greet people, what kind of things are acceptable to say in public etc. In some respects we were very successful. Up to the point where we pulled him from public school, Chet could not understand how to respond when someone said "How are you?" as a greeting. He would answer "Tall." He had gotten his adult height very early in his puberty and this was the only thing of note he could think of to respond with. Unfortunately it was something of a conversation stopper. We got to the point where he would have a more socially normal response to such questions and to the point where I could take him to a restaurant for a meal if it was off peak hours. In general his eating remained a weak area. It was important that foods not touch and though we had greatly increased the kinds of foods he would eat over the years, he often felt the need to mash them into a paste. He also wanted his foods tepid or cold and we found that having him eat a communal meal with us on a regular basis was not possible. His food would be too hot, he would complain and then sit and mash his food which bothered both my spouse and I. He was stressed by trying to eat with us regularly and actually did better when I had him eat alone after we were done eating.

He began to use poetry to express some of the teen angst that he was feeling and had pieces published at which gave him great pride. He was able to complete a coming of age program at our church. This was an intensive one year program that helped teens to clarify their values, build a strong relationship with a caring adult member of the church through a mentoring situation, and participate in community service as well as have fun with peers. We knew this would be hard for Chet and it was a bumpy ride. But the director of our church was awesome working with us and with Chet to help him achieve all the experiences. He even made it through the vision quest and overnight camping experience. The vision quest involved sitting in silence somewhere and we worried greatly over whether he could do it. The overnight camping we worried that he would get too wild and out of control as the night wore on and his meds faded off. In an odd form of luck, they had horrible weather for the campout and all that extra energy was effectively and appropriately poured into helping other campers stay dry :-)

We managed a number of family vacations with a variety of successes. The Puerto Rico trip was probably the best. We also had successful trips to the White Mountains. What worked the best for Chet but grew wearying for us, was returning to the same place year after year. He craved a familiarity, even to the point of wanting the same bedroom in the same cabin. However we were willing to do this if it meant we could get away for a time as a family. Our worst vacation was probably the year we broke from that pattern and went to Acadia in Maine for a week of camping and hiking. We rented a travel trailer and Chet was convinced the pop up was going to tip over and could not settle down at night. He hated the rocky shores which were unlike his previous beach experiences and became quickly chilled by the water. He began to act out so badly a weeks vacation became 3 days in a cold foggy h*ll and we left early for home.

I had also spent a great deal of time on the net researching what Chet could really be all about. It was clear to my spouse and i that it was more than ADHD. I had friends with kids who had that dx and they didn't act like Chet. They might be active, but they ate well. They didn't focus on repetitive actions or obcess about an activity or passtime. They in general had better social skills. I began to read about Aspergers Syndrome and found that Chet met the criteria for it. I talked with our Dr who agreed that this was likely, but without actual testing would only label him as ADHD and "personality disorder unspecified." I wasn't worried. If we knew what was going on it gave a way to find a way to deal with him and a way to communicate most effectively with him.

We started trying to help him find a job. What would be the best fit? Clearly he was bright, but he had a lot of trouble following multistep directions and remembering details. Even as a young adult, he had to be reminded to wash at night, shave in the a.m. change his bed or come to a meal. He filled out application after application at grocery stores where stocking might work, or carriage retrieval. He filled out applications at fast food places where so many teens get a start, and small local stores. In many cases it looked like a sure thing till he got to the actual interview. There his social skills fell apart and perhaps due to nerves, became worse then usual. We practiced mock interviews at home. No luck.

I applied for SSI for him and we were sent to meet with a Dr. who would decide for Social Security if Chet could work. He talked with Chet one on one for 2 hours and decided that he was fully capable of working. Our claim was denied. I decided to appeal and was lucky enough to have my health insurance pay for a neuro-psych eval for Chet. It was intensive and a one inch document confirmed that Chet had Aspergers Syndrome and a host of other potential issues. I submitted this to Social Security and within a week our claim was approved retroactively.

At roughly the same time, we contacted Mass Rehab and they agreed to evaluate him in a sheltered work environment for 30 days. I drove him back and forth. It was a failure. At the end of hte month they met with us and with Chet and explained that he could not be counted on to follow directions that had been explained to him. He had injured himself multiple times because of not following directions. He had involved himself in other people's work and issues when he had been asked to stay at his own work station. In short, someone with Down's Syndrome was more effective in the workshop environment and had greater productivity than Chet had. At about this time the SSI had kicked in and they suggested that we pay Chet's SSI to them to have him continue participating at hte workshop. They said that perhaps he would learn to work by doing so. I said it didn't make sense to give all the kid's money to them when he wasn't even earning more than $20 a week at the workshop. Chet agreed that this was fiscally unsound. His disappointment at the workshop evaluation was tempered by his excitement with his retro check and a chance to do some serious shopping. He chose a new memory foam mattress for his double bed, bought a laptop, some CD's and a lot of new clothes.

Meanwhile i was sure there was something somewhere. I was also increasingly sure that Mass Rehab didn't have answers for us. They had offered to continue meeting with us to help Chet but the meetings made things so much worse. They had access to the neuro-psych data and yet they either didn't understand it or didn't use the information. For instance they would say "I think Chet might do well with the furniture refinishing program in Roxbury." Chet is a concrete thinker. He heard "I am going to be part of a program for furniture in Roxbury." But this wasn't the case because the meeting was much more stream of consciousness for the staff involved. Someone else would pipe in 'oh no, that is only for people with such and such a diagnosis." Someone else would say "but maybe such and such a grant would cover it?" Still another person would say "no they phased those out months ago." They would throw out acronyms for agencies which baffled Chet. They would openly talk about how he didn't meet DMR guidelines but wasn't fully functioning. It was demeaning in the manner in which it was handled and I hurt for my son. Chet was confused and angry. He would rage for days after these meetings, sure that the people involved were ignorant and didn't know what they were doing. (truthfully it did sort of come off that way but his reactions were typically Chet and very extreme).

I suggested to Chet that we look for volunteer opportunities for him. My private theory was that volunteers are sometimes cut a bit more slack than employees. His eccentricities might be more tolerated if he was volunteering. Meanwhile it would give an opportunity to work on the social and work skills that he needed. I found a place via a United Way site which was looking for help. They packed food for the local Meals on Wheels and were not too far away--about a 12 minute drive. I spoke with the people there and explained about Chet. I said he loved to help, but needed clear simple instructions and frequent checking in to be sure he stayed on task. They were fine with trying him out. He went once a week and my spouse was responsible for driving him back and forth. He loved it there and was well liked by the majority of people who commented on how very helpful he was. After 6 months, the boss there offered him a job. I called Mass Rehab and told them to close his case.

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