Yesterday, I was at the Waisman Center for A Day with the Experts: Autism. Presentation of research findings and ideas. This is the third time I’ve come to this yearly event. A few faces are familiar, a few of the organizers smile or wave, but I did not spot anyone who I knew until the end of lunch time. Lots of students but lots of parents and professionals as well. The autism world, even in this small place, is so much larger than I have experienced.
I glean bits and pieces, looking for some that I can make use of, some practical ideas because no matter how theoretical the ideas presented at Waisman are, there is at least some, and possible a lot, of evidence to back it up. The amount of evidence necessary to promote a therapeutic tool into the evidence based category is so expansive that so many therapies and therapy tools never make it into that esteemed category. Anecdotal evidence is not sufficient. I chafe at times under those qualifications but what comes out of the research community at Waisman is vetted.
Brain imaging: Data, a few conclusions, and projections of where to look next. Brains on autism are different. The long distance connections between different areas of the brain are fewer and not as strong as NTs. Interesting. Intense use or exercise of the corpus callosum and also activities that demand that both sides of the brain be used may increase long range connections. Good long range connection is necessary for quick verbal response, among many other things. Now, where to go with it?
Transitioning together: Data shows that parents with kids with ASD are more stressed throughout the life of their child. Umm, knew that one, but some interesting information about social groups for teens and their value. Adolescence and adulthood are not easy on those with ADS or the families.
I heard some conversations as I sat quietly waiting for the day to begin and for lectures to resume after lunch. A few parents and an elementary teacher complained that there was nothing there for them. I thought to turn around and tell them that there is but that they must decode the reports on the research for themselves. This is not a how to conference but a report on the recent research before or just after it is published. I understand the frustration -- I feel it often -- and I understand the intense desire for any kind of direct answer that will help their child, their students, but that is not available. In a great sense, we are privileged to be invited into the refined, scientific air of the Waisman Center. The could keep it all to themselves and let people like me hear about the “latest research” years after it is published when it is filtered down to us and translated by therapists or school experts. They allow us in, and will answer questions if we can figure out how to ask them, but it is up to us to strain towards understanding.
It has been nagging at me that Julia has been on the same reading level for almost the entire school year. She can decode at a higher level, but she does not have sufficient comprehension skills to progress higher. She cannot answer those wh- questions about what she reads. Granted she did go from zero to mid-second grade last school year, and maybe it is just that the comprehension piece has to catch up to her decoding and that will take time. But there is also the worry wondering if this is a plateau which she will stay at for a long time, so long that forward movement stops. Her reading teacher, who passionately loves Julia, told me that she was doing some reading at a higher level with Julia so that she learns more vocabulary. She is reading non-fiction books with Julia and sends them home after Julia reads through them twice. She wanted to check whether I was re-reading these books with Julia to make sure she understood all of the words and to question Julia after each page about the material on that page. The books are copied and stapled and any pictures are black and white. Julia loves to color these books as well as read them. I pick them up now and again to read but have not made an effort to highlight them. From now on, I will and will encourage our therapists to do the same. This is also good material to take words from to make the word search and crossword puzzles. I spent some time doing that yesterday and came up with pretty huge puzzles. I think I will make some simpler puzzles to start with and we’ll work towards the large puzzles I came up with yesterday. Julia is fascinated with both word search and crossword puzzles. Last week, she found a NY Times crossword book that I had gotten David for a Christmas gift and that he began using before his health and energy began to decline. She wanted to do one of the puzzles with her therapist. Imagine, Julia doing a NY Times crossword puzzle! Well, not this year, but who knows. She has such a will. I was going to send that book to Lisa who loves crossword puzzles, but I wonder if I should keep it for some future Christmas. Can I dream of a day when it would be an appropriate gift? So sweet it could be, a few of the puzzles done by her daddy?
Last week, the book that was sent home was about prairie dogs, this week’s about whales. “Mommy, a baby whale is a calf and it stays by its mother for a long time.” Like you, I thought to add. The book is 40 pages long and contains over 1,000 words. Progress is slow but remarkable. The future is scary, to me at least. When I go to conferences like the one I went to today and hear about adult living situations, loss of ability after high school, and lack of appropriate employment opportunities, I go cold inside. But then I come home and make a 25-clue crossword puzzle that I am almost sure we can work up to in a month, and I am buoyed up with dreams of ability and accomplishment. The reality lies somewhere between. I need to hear and feel both to keep the challenge going.
The reading teacher who is one of Julia’s aides during the day, also told me that she did not agree with the consequence of sending Julia home if she picked or scratched at her sores three times. She didn’t think it would work, and she thought it was a cruel consequence for Julia who sincerely loves school. I understand her concern and her reaction. I felt the same way at first, and it did feel like a sort of tough love exercise. It may have been. But it also was the best and maybe only way to get Julia’s attention, and the attention was what we needed to get her to control the behavior which hurt her body. I don’t know if what I said, even the very successful result of our behavior plan, changed this teacher’s mind.
As I listened to her, I also was observing myself. At one time, not so long ago, the implicit criticism that this teacher was offering up would have been hard for me to hear. I would have seriously doubted myself, but in this situation I felt that even if the behavioral program did not work that I was doing what was most appropriate and best for Julia. As I listen to the experts talk about the difficulties of adolescents and adults with ASD, I don’t wonder if this new found decisiveness will come in handy in the future. The weight of responsibility is not easy to take up. I always carried it, especially for Julia. Oh, and there are those who laugh at me when I say that parenting Cheshire was a matter of letting her do what she wanted to do. I mean, I mean. I was responsible for Cheshire, but she was ready to take on small bits of responsibility, like what instrument to play, very early in her life. Responsibility for Cheshire was shared among the three of us with Cheshire always longing to make more decisions and David and I dolling responsibility out little by little until she was able to do it for herself. Julia is that fourth child at the Passover Seder table, the one who doesn’t even know how to ask the questions. The Hagaddah says that it is the adults’ responsibility to respond to each of the four types of children in ways that bring them into the greater community. What is the response to the silent child?
Experts say that it is the parent who knows their child the best and so, the parent must have an active role in any therapy, education plan, medical plan for their child. But knowing “best” is an awesome responsibility and I, for one, knew early the depth of my lack of expertise and knowledge. I wanted experts to tell me what to do and many of them turned the question on me, on us. I understand in my gut the feeling of overwhelm and loneliness of parents who feel that what is “best” for their child is completely out of their realm. The learning curve is steep and the learning is slow and arduous. Parents are blamed for falling off that curve and giving up for one reason or another. But it is hard, very hard, and anyone one with children who have typical journeys from childhood to adulthood have no idea at all. I know, I had no idea.
I don’t know if I can ever explain what it feels like to have responsibility for another person who does not strongly desire to assume that responsibility for themselves. I don’t know if I can ever explain it in such a way as to make those not a parent in this circumstance understand. But if I could do that, if anyone could do that, there would be change.
The ideas in these over written and much too long paragraphs fill me with such emotion. I am almost in tears, not quite understanding the reason. I can almost touch some conclusion. Almost. I am not there. Not yet.