A few explanatory notes and updates have been added in [brackets]
It has been a long, hard year, one of the worst ever for me. We seem to be doing better now, but I still sometimes shudder when I think of the middle months of the year.In February we went to see a specialist in kids with Tom's sorts of problems, who lives and works in Bethesda. We got back from DC OK, and were encouraged by what we had heard. Dr. [Stanley] Greenspan, in Bethesda, consulted with Dr. Molly Witten, Tom's psychologist here [in Evanston], and started us on a new kind of therapy. This was a very behavioralist approach, which, among other things, was to get Tom to respond and comply to people the way he should have learned years before. Mia and I, and some friends, were to do the work. It proved to be very hard for all of us, especially Tom, and he did not respond well. Molly made some suggestions, but, as she quite openly told us, this kind of work was not her specialty. We felt frustrated and uncertain.
[This was the Lovaas Applied Behaviour Analysis program.]
Then in May Mia got a muscle spasm while digging in the garden. She became quite incapacitated. It turned out she had a slipped disk and a pinched nerve in her neck. Physical therapy did not improve things. She was advised to have surgery for the slipped disk, which she did in June. OK, but after this kind of surgery the recovery is long. She was out of work for the summer and could not engage in any heavy effort. For several weeks she was unable even to drive.
Poor Tom could not understand what was going on. Mommy could not play with him, or even give him a serious hug. Life in the house was completely chaotic. He regressed badly, losing what speech he had and most of the ability to relate to people he had gained over many prior months. At bedtime he would jump and scream, sometimes for hours. The behavioral work had to be dropped. Mia was physically unable to do it. I did not have the time for it; I had to do the housework she couldn't. It was the worst time of my life.
Tom's Day Care was finding him increasingly hard to manage. They asked us to find a personal aide for him, at our expense, who would work with him there. This we did. This worked OK at first, but was very expensive even then. As the summer wore on we became concerned about how much attention she was actually paying to Tom, and how much of the therapy she was actually doing.
Mia recovered physically in August, and Tom recovered psychologically from much of his regression. In fact, Molly was quite surprised at how fast he bounced back. However, we had lost months of development. Molly told us that we should resume the behavioral therapy, but that she should not manage it. She recommended another psychologist who specialized in that kind of work. This was Dr. Ann Maxwell, who gave a weekend seminar for us and organized a program with elaborate record and monitoring of progress. It cost us $2000 for the weekend alone.
By early fall we were under way with this. We could not do all, or even most of the work ourselves. Tom's day care aide had to do the largest share, and we were losing confidence in her. She was proving to be unreliable, and the day care management was insisting that Tom could not come there unless we provided an aide. We were also trying to hire other people to help with the therapy. We kept finding people who said they were interest, and came for an interview, but then backed out before really getting started. Commute time was mentioned as an issue; I was not used to thinking of Evanston as being at the edge of civilization. Furthermore, Tom was not doing well in his school program, from which we had been led to expect great things. Then came another blow: Molly told us that she did not think that Tom would ever be able to lead a normal life. He had lost too much ground in his growth. In my heart I was not surprised, but Molly had never spoken so clearly before. In fact, until the spring she had been quite positive about his prospects.
None of this had been easy for Jamie. He was doing very well in school, but had a lot of social problems and had to have psychotherapy himself. An additional nuisance was that he was going to a different school in the fall. We were transferred as part of the School District's unending struggle to achieve racial balance without having the kids go too far from their homes.
Actually life got better after that talk with Molly. Mia conceived a scheme whereby she and I could change our work schedules so that one of us would always be home when Tom was not in school. This allowed us to get rid of the day care, and the aide. We found a wonderful person to help us with the therapy. She is a psychology student and is really interested in the work. Then a long time baby sitter of Tom's, who had been very tied up with her high school work, got the grades she needed for college and her parents let her come over two afternoons a week. Tom started doing much better in his therapy and at school.
Then another surprise: Just this month, as we were doing our Christmas preparations, we learned that Tom was allergic to wheat and milk products. Recent studies (really recent) have shown a link between these foods and autism. They affect the brain as opiates in these cases. Even small amounts are bad. So we interrupted Advent to tear our kitchen apart, learn the local health food stores better, and start a new way of life. We try not think about how things would have been if we known of this earlier: That really was not possible.
What else??? The night I broke my nose, causing a permanent scar....My difficulties at work (I was supposedly working a normal job during all this)....The morning in Michigan when Jamie fell out of a bunk bed and had to go to the emergency room....The time our day care aide was driving one of our cars, wrecked it, and caused a four car accident with injuries at a major intersection....Our finances, which behave like a black hole....Mia's best friend has a bad case of cancer [Kimberly Yale died of cancer in March, 1997.]. Time to change the subject.
Compared to what has gone before we actually seem to be taking the diet change in stride. In fact, Mia really likes having a good reason to do a lot of baking. There are plenty of supplies available now, and even cookbooks with good recipes. We are getting a lot of support from those closest to us. The best thing is that we are already noticing more improvement in Tom.
The new therapy, now that we have the right people and the right place (our home), is going well. There is a fair amount of quantitative work in reading the data sheets and computing the averages to measure Tom's progress. I have taken to doing this myself. I can do it, and it saves paying the psychologists for that--we can pay them for what we cannot do. It has been particularly satisfying work in the last month when dramatic progress showed up.
Our church has really come around. There was a time when they did not seem to notice or care about our problems, but that has passed. We have someone (an experienced pre-school teacher) to work with Tom in Sunday school. Parishioners often brought us dinners while Mia was laid up this summer. The clergy are coping with Tom's new diet, which poses a special problem for them: All wheat products are forbidden. The rector's wife works on the behavioral therapy with Tom on Saturday afternoons.
[Jane continued to worked with Tom in Sunday school through the spring of 1997. We were able to use non-wheat bread for communion at that parish, and elsewhere, from that point on. However, the other members of the parish did not stay involved with Tom.]
Glenn McDavid
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©1995, 2000 by Glenn T. McDavid.