Sunday, May 10, 2009

Rainbow disconnection

In March I met with Jack's preschool teachers for his bi-annual progress report. This was the second conference since he started preschool in September. The first conference had been a bit shocking for us; his teachers felt Jack's behavior was often inappropriate -- we left feeling that he was misunderstood. Since then though, Jack has made progress in some areas, particularly curtailing his urges to pull letters and numbers off the walls and cubbies. So I wasn't expecting balloons and champagne, but I was cautiously optimistic about his progress.

Hans stayed home with Jack that morning and I arrived at school at 8:30 for the first conference of the day. It did not go as expected. His teachers agreed he had made progress in some areas, but they pointed out that he has been unable to make friends, and urged us to have him evaluated for (saying the word without literally saying it) autism.

I came home in tears. How could they think he was autistic? Our sweet little boy who came running to my arms every time I picked him up from preschool, would curl up in my lap to read, and loved to listen to music with us every chance he got. This was a disconnected kid?

As soon as I could I Googled autism. No, Jack didn't bang his head against the wall, rock or sway when distressed, or flap his hands. Then I noticed a subcategory of autism I had never heard of before -- autism spectrum disorders, and in particular Asperger's syndrome. From "In Asperger's Disorder, affected individuals are characterized by social isolation and eccentric behavior in childhood. There are impairments in two-sided social interaction and non-verbal communication. Though grammatical, their speech may sound peculiar due to abnormalities of inflection and a repetitive pattern. Clumsiness may be prominent both in their articulation and gross motor behavior. They usually have a circumscribed area of interest which usually leaves no space for more age appropriate, common interests." The more I read the more I saw Jack. He was having trouble making friends -- he's always had trouble with that. Even as a young toddler when I took him to playgroups or library sits he immediately wanted to go home. His play involves his parents but not kids his own age. The other big red flag was his obsession with numbers. He sees numbers everywhere we go -- on houses, at the store, tracks on a cd... you name it and he's somehow found a numerical component to it. His math skills are insane: not only can he add and subtract numbers up to 50 (sometimes higher), he also understands the concepts of multiplication and algebra, at the tender age of 3 years 5 months. Instead of normal small talking, numbers have been becoming almost all he will talk about.

The other Asperger's characterizations did not seem to fit him, particularly poor gross motor skills, clumsiness, and peculiar speech. But the intensity of the first two symptoms was so strong I felt at once that this was Jack. I felt deeply sad that Jack could be unable to make friends and live a connected life. And then I felt a strong sense of relief and hindsight. It's like we've been trying to put together a really hard puzzle without an accompanying picture. Because Jack has always been a handful and a half. Since we don't have other children, it's tough to compare him to others, but overall he's always seemed super interested in connecting with us, his parents, while uninterested in other kids. He was never and still isn't mellow. From the moment he wakes up he is up and ready to play. For the first 3 years of his life that was ok, but now at almost 3 1/2, it's time for him to play with other kids. At the end of each day I'm exhausted from the physical and mental stress of keeping up with him. It's time for some changes and some help.

During the past week Jack has been undergoing evaluation at MDAC (Multi-disciplinary Assessment Center) at San Francisco General. The staff there is awesome -- everything we could ask for -- kind, smart, intuitive, skilled, and wonderful. Jack's had sensory and cognitive testing, as well as observation at school and interactions with the psychologist. We go back Tuesday for a final assessment, but after spending hours answering questions with the psychologist, we pretty much already know that they see him as Asperger's. It has been so instructive to see all the evidence piling up as we turned each page on the assessment booklet. "Does Jack look up when you enter the room?" No. "Is he able to make small talk?" I think of him sitting at the dining room table at dinner, while we try to ask him about his day at preschool, and he ignores us, asking instead what 48x2 is (I see now that when he's stressed he soothes himself with numbers). "Does he make eye contact with people he meets?" Usually no. On and on, the assessment showed just how poor his social skills are. The boy who, when I called his name at 18 months would come running down the hall, his cheeks shaking with each bounce, now doesn't seem to hear me when I speak his name 4-5 times. He makes jokes with me and Hans, but not with kids. Only in the past 6 months or so has he become aware of "outside" noises like fire trucks or car alarms, noticed smells, and responded to physical sensations like water on his skin. Yesterday he told me, "I like to play with adults but not kids." I've watched him at the playground ignoring boys from his preschool -- when I asked him who they were he seemed not to know or want to say. When the psychologist brought some dolls out of a bin and sit them on a table Jack instantly wanted to go home. The most telling evidence of all came from Jack yesterday: he told Hans that he wanted to play with other kids, but "I don't know how."

His cognitive tests were very strong, and the staff at MDAC noticed that Jack wants to connect with people, which is important for therapy. His psychologist believes he will respond well to social therapy, which we hope to begin as soon as we get his assessment completed.

The good news is that even after a few days of rather confrontational assessment at MDAC and some "flying by the seat of our pants" home-based therapy, we see improvement. We remind Jack to make eye contact with people while conversing, and he's trying. We play tea party and he accepts a man doll (like a GI Joe type) we named "hiking dude" to the party. I bought him a little doctor's kit and he takes baby kitty cat's temperature and administers medication. He came home from school Wednesday and participated in conversation about his day. When I tucked him in a few nights ago he sleepily said, "I'm the happiest boy in the world."

Hans and I have always said how lucky we are. Jack has always been physically healthy and adorable. I saw a boy about 2 1/2 yesterday at the Discovery Museum being fed through a stomach tube. We have friends with a son whose mind is brilliant but his body doesn't work. A friend from college lost a son to a fatal genetic disease. We are so lucky -- we have a sweet son who says "I would love to help you," a dozen times a day, who giggles as he chases bubbles in the yard, loves to hike, climb, jump, and run. We are lucky. We're a strong family, Jack's been assessed early, and we're all going to get some help. Lucky lucky lucky.

Books we've found helpful:

"The Oasis Guide to Asperger Syndrome," by Patricia Romanowski Bashe

"The Boy Who Loved Windows," by Patricia Stacey (explains floor time therapy)

"The Complete Guide to Asperger's Syndrome," by Tony Atwood


Susan said...

Oh Jane, my heart goes out to you and your family. I can't imagine how hard it must be, but I'm glad to hear your boy is getting some help - he sounds like a sweet little guy.

the calm before the stork said...

Wow, Jane! Wow. Wow. Wow.

This is really intense. It is so clear what a fantastic and present mom you are, a great ally for sweet, smart Jack.

Sending virtual hugs.