Yesterday, Kyle came over to play with James. At my house, the TV and the computer are off limits when friends come over. So Kyle brought over a tub of stuffed animals. The younger kids love when he comes over too and everyone has a great time feeling included. For over an hour, they used their imaginations with these stuffed animals. 10-year-old boys and stuffed animals! Any other 10-year-old boy would have made fun of them. But Kyle and James are made of the same stuff. They are from the same planet. Watching them play made my heart swell...and ache.
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James has been saying "I love you Mom" a couple times a day for the last couple weeks, initiated all by himself. Each time, it stops me in my tracks. His face has love written all over it. It amazes me how my Asperger boy has come to exhibit such expressions of affection. It's not just the words, although that in itself is a miracle to me. But more than that is the way his body language shows how he feels. My other two kids say this all the time and my daughter is especially cuddly and mushy. When it comes from James, it means a hundred times more. Sometimes, he even initiates hugging me.
I remembered when he was 4 and barely talking and I told someone who had a 2 year old how articulate her son was and she looked at me with a blank face like every other kid speaks as well as hers. Many many years later and much coaching from speech pathologists and parents, James has come a long way. So much so that he no longer qualifies for speech therapy. That does not mean that he talks like other kids his age. Not even close.
As would be expected of a kid with Aspergers, James uses large words for his age. Because he was dismissed from speech in school last month, and because he will be homeschooling in the fall, I had him evaluated by an outside speech pathologist to see if he'd qualify for help. We have not yet received the results, but I expect they will say he is too smart. Like all things, James can provide the right answers, but it doesn't transfer to real life situations. During the evaluation, the woman tested him on idioms. He blew it out of the water because that is an area that he has worked on for years and absolutely loves. And during the interview, he used words like colossal, navigated, and selected. He knew exactly the right words and manners when tested on introductions and conversation give-and-take, but he doesn't use them in real life. He fell to pieces the other day when I tried to coach him on making a phone call to invite Kyle over. I am not interested in the correct words to use. I am not even interested in pragmatics at this point. I'm interested in his fluidity, tone, pitch, and inflection. In addition to using big words, he does not sound like other kids his age. He stumbles over words, struggling to spit them out, often giving up and saying "never mind." But even more concerning to me is that when he speaks, his tone of voice makes him sound angry when he is not. Something neutral comes out as hostile and becomes offensive. His voice may sound monotone when there should be inflection of one kind or another. How can I coach him on something so subtle that makes all the difference in how people perceive and understand him?
Some kids with Autism or Aspergers are sensitive to everything. Loud noises, textures, etc. It differs from one individual to the next. A term often used is Sensory Integration Dysfunction, and when James was younger, one of the social workers kept insisting James had this and I kept insisting he was barking up the wrong tree. I finally called DHHS and told them to assign me a different social worker or close my case. In James' younger days, he was very sensitive to slow songs. He interpreted them as sad. In church, he would cry when they sang hymns because they sounded like funeral marches. He hated for me to sing to him, even happy uplifting songs. He was under sensitive to temperatures. When the weather changed and it was time to switch from his winter wardrobe to his summer wardrobe, he couldn't deal with the absence of sleeves or socks. He took an extra long time for potty training, partly because he didn't mind soiled diapers, even cloth. He has obviously grown out of all those things.
But the sensitivity to his face is still there. He can't stand glasses with nose pieces; fortunately, it is now the fashion to wear glasses with big black prominent frames (if it is fashionable to wear glasses, which it is not for kids). But mostly, he still can't deal with water in his face. I am still on him about washing his face, and he bristles every time I talk to him about it. Taking a shower instead of a bath was a huge step for him 2 years ago. I'm sure he isn't washing very well, but my guess is that most boys his age do an inadequate job at it so I shouldn't be overly concerned with it unless he smells bad. He hasn't seemed to notice, but he is in the the swimming class for 6-year-olds because he still struggles with putting his face in the water. If we could afford to put him in year-round swimming classes, I would do it as an attempt at breaking down the sensitivity. I am glad he hasn't figured out that his younger sister, who is struggling with her own swimming issues, is in the level above him during the same time.
It's the little things that are really big things. I am aware that he has made tremendous strides and I am supremely proud of my son. Yet my heart aches constantly, knowing he has not become, and never will be, like others his age. To see him alongside other boys pronounces the differences and I am guilty like this mom that I still wish he could somehow evolve.
Then I watch him play with stuffed animals with Kyle. Or the way he gets down on the same level as a 3-year-old to play puppets with them at the library. Or the way he pats a little baby on the head and asks to hold it. The tenderness in his face as he watches the baby in the pew in front of us. The sincerity in his voice as he tells me he loves me. The dept of his sorrow when he has committed an offense towards another and learns how it hurt them. So often, I think he's a cross between Holden Caulfield and Lenny Small. Oh my child! How you rip my heart to pieces! How could I want you to be like other children when you are so much more than them.
Before you go to sleep
Say a little prayer
Every day in every way
It's getting better and better
Beautiful, beautiful, beautiful
Beautiful boy
Darling, darling, darling
Darling James.
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