walking out from darkness, sunlight is blinding

Catching up on the latest sporting news

We are a family with autism. I don’t think that there’s any way to be in a family, with one of its members affected, and not have everyone be affected.

He is six now, due to turn seven in four months’ time. Every February, I revisit, in my mind, the day he was born. It was an intense experience. I was not prepared for my first child’s arrival, six weeks early. In some ways, I wasn’t prepared for him at all. But come he did. He had to be transferred out of state, because there were no beds available instate. I was trapped in the hospital, tethered to an I.V., while my body got rid of whatever infection had come about while I’d unknowingly been leaking amniotic fluid. And when I finally got to see him again, he was in the NICU, under bilirubin lights.

He was tough, though. Even that early, he was five pounds. His younger brother proved out the theory that the older would have been huge at term; the second one came a week late at eleven pounds. He shook off the need for CPap, and the jaundice was gone swiftly as well. The only thing that stuck with him was what everyone thought was reflux, this later turned out to be milk intolerance; as soon as he started on soy milk, his tummy settled down, and we’ve never had a problem since.

I have a hard time remembering much of those early months. It’s funny how quickly the small things fade away, like softer stone eroding, leaving only gemstones behind. What I do recall is how hard it was to entertain him. It took grand gestures, theatrics worthy of Cirque du Soleil, or Vaudeville. His favorite place to be was in the doorway jumper. He would be happy to stay there for hours at a time, and when he was finally able to walk, he switched to jumping on beds, or my parents’ loveseat (which he completely destroyed). At seven months, he said his one and only word to me, “Mama”, before lapsing into nonverbal frustration. In reality, he only just started true speech this past year, although we had one great moment two years ago, when his baby brother fell down, he looked at us and said, “Uh-oh baby.”

We got a diagnosis for him almost exactly four years ago. I could have probably pushed for it earlier. By the time he was a year old, I knew something was off, that he was not where he should have been, if he’d been progressing typically. Like a wishfully thinking mother, however, I allowed myself to be reassured by tales of other family members who had been late talkers. By his second birthday, I was getting frantic, and followed through on a referral to our state’s early intervention program. It was through the auspices of this program that we found ourselves at the University of Connecticut’s Developmental Psychology department, where a study was being run for early detection of autism.

I was prepared for the “blow”, as it were. I’d asked everyone to be honest with us, and not give us any false hopes to cling to. In a way, it was almost a relief to finally understand what world he lived in. It wasn’t what I would have guessed outright, since my picture of autism was limited to my first cousin, who is much deeper on the spectrum. The two of them bear little resemblance to one another, in terms of what autism looks like. But my husband and I took the diagnosis and dealt with it. We’ve continued to deal with it in our own individual ways. My husband deals with the fears of the future. I’ve come to a place, I guess, where I don’t worry about it, but my concerns are equal in other areas. Will he have friends? Will he always want our affection, hugs, and kisses the way he does now? Will he ever eat anything besides the five foods he has in his diet now?

Initially, though, my biggest regret about the diagnosis lay in one of the deepest mysteries of autism. Autism tends to provoke only literal comprehension of the world. My son cannot yet understand the difference between me saying “no” to something and “yes, I know”. All he hears is me telling him “no”. In the early days of the interventions he was receiving, I would sit and stare at all the books I had been collecting for him.

I have always favored fantasy. As a young girl, I would be buried in Madeleine L’Engle, Lloyd Alexander, Joan Aiken, or whatever I could dig up from the library. For me, the real world was the boring place I lived in; who wanted to read about it too? I needed, and craved other worlds. Even as an adult, I usually go check out the YA section for new authors, like Angie Sage, J.K. Rowling, and Philip Pullman. It was with a great pang that I sat there, thinking how he would never love literature the way I do, never be transported to far away places on a dull rainy day.

It didn’t deter me from acquiring more books, however. And somewhere along the road, I’ve come to realize that I can help him learn how to read that sort of book. So maybe I’ll have to explain every turn of phrase and metaphor, not to mention the subtleties of human nature. I should just think of it as helping his brain keep building new pathways.

As with any aspect of autism, or special needs children in general, everything we undertake is daunting. My son is sight reading now, for instance, so we’ve got to take him in hand and teach him more words, as well as the context that will help him understand them. It means sitting with him on the weekends (he’s too spent after a full day of school), while he whines and shows his displeasure by slapping the word cards. But in the end, when he suddenly realizes he knows a word he’s seeing outside school or home, his excitement in showing it to us is beyond all measure. It hopefully will become the carrot off in the distance, tempting him ever forward.