The Writing on the Wall

I think mothers know. They have a sense if something is not right with their child. When Alex was about 15 months old, something just seemed “off”. Around that time, he began losing the language and play skills he had developed. He would walk right past me as if I wasn’t there. If I called his name, he would not respond. One day as he sat at the kitchen table, facing away from me, I held a cookie sheet above my hea0607161640ad and then quickly slammed it to the floor. Everyone else came running from all over the house to see what had caused the loud sound. Alex didn’t turn around to look; he didn’t even flinch. Every night from about midnight to 2 or 3 am, he’d hold onto the side of his crib, bounce up and down, and say “legga, legga, legga”. The tiles on the kitchen floor had gaps between them and Alex laid on the floor for half an hour at a time, picking at the spaces between the tiles with his index finger. Long before I could name it or define it, I just knew. I tried to ignore the ever-growing, gnawing anxiety I felt when I saw him do these things, but it never left me. Even before the search for answers, before the appointments with the specialists, before the diagnosis, I knew; I knew my child was different.

Friends and family members started saying things like; “Oh, he’s just really bright and he’s bored. You need to get him some more challenging puzzles and toys;” “Oh, he’s fine, you worry too much. Stop reading all those things” (about disabilities). Was I overreacting? Seeing things that weren’t there? Making mountains out of molehills? My husband’s friend since childhood, Bob, worked at a residence school for autistic teens. (That might very possibly have been the first time I’d ever heard of “autism”. Remember, this was 1991, and the rate of autism being diagnosed was only 1 out of 10,000.)  I’d say to Bob, “Look at Alex–do you think he’s autistic?” He would say, “Nah, he’s not weird enough.”

Although part of me wanted to believe that nothing was wrong, I could no longer ignore the writing on the wall. Eventually, it turned out that my fears and concerns were true. By the time Alex turned three, I had to find out what was going on. I took him to our pediatrician and described to her the odd behaviors and unusual things I was noticing: lack of interest in potty training, lack of eye contact, staying awake most of the night, lack of speech, periods of unusual crying and giggling, ignoring us when we talked to him, acting as though we weren’t there. She said, “Well, any one of these things alone wouldn’t be cause for concern, but putting them all together, I’d say we need to look into it.”

Since some autistic children are at first thought to be deaf, we were sent to see an audiologist. He had to have an evoked brainstem hearing test, as he did not have enough language to be able to respond to questions about what he was hearing. We were told, “His hearing is fine.” Next, we saw a speech and language pathologist: “Nothing physically stopping him from producing speech.”  Then, finally, came the day when the neurologist looked briefly at Alex, and then asked me a few questions: “Does he like to stare at light bulbs?” “Does he run the water a lot?” I told him, “No, but he likes to line things up.” You know how some memories are etched–no, seared–into your brain? That’s how I recall the moment the neurologist looked at us and said, “I’m sorry to have to tell you this. Your son has PDD-NOS.” (Pervasive Developmental Disorder–Not Otherwise Specified).

I didn’t exactly know what “PDD-NOS” was, other than it was a vague, catch-all phrase they used when they didn’t have any other label to use. What I did know was that a doctor, a neurologist, was telling me something was wrong with my child. I went home and cried for a week. I cried in the shower. I cried making breakfast. I cried washing the dishes. I cried while walking the children to school.  (It would be another two years before a different neurologist–for purposes of enrolling Alex in pre-school because of his developmental delays–would diagnose him with “classic autism”. ) I don’t remember thinking “Oh, what a relief to have an answer.” All I kept thinking was, “No, this can’t be happening. I don’t want something to be wrong with my child!”

Sometimes even after you’ve seen the writing on the wall you still want to deny it or try to ignore it. Maybe this isn’t really what’s going on, you think. Maybe they’ll find a cure. Maybe this next treatment/pill/therapy/etc/etc will change him. But will it, really? As a parent, you want to hope; you need to hope. Unfortunately after awhile–so many treatments, programs, exercises, diets, techniques, so many things to try–I just had to say, “Okay, that’s it. He’s going to stay just like this so I might as well accept it.”

I remember reading about “recurrent sorrow”. This is when your friends’ children or your nieces and nephews meet certain milestones, which you realize your child will never achieve . . . they turn six, twelve, eighteen years old. They start school, participate on teams, join clubs, have best friends over for slumber parties, get a part in a play, learn to play an instrument, sing in a chorus, graduate middle school and then high school. Then there’s the first prom, acquiring a driver’s license, working at part-time jobs. Go to college. Get married. Have a career. Not for Alex. Wow. Even writing this, I feel the sadness. So much of life will pass him by. I sincerely hope he’s not cognizant of what he is missing; if I felt that he realized it, I don’t think I could handle the pain.

As difficult as it is to know that he will never fully experience life to the extent that our other children will, it makes those small moments when we do connect that much more rich and rewarding. One of my favorite memories is of something that happened when he was probably about three years old. We’d be sitting on the sofa, and he would get close to me, look me right in the eyes, and say something which I couldn’t understand. He did it over and over. One day I finally realized what he was saying and I exclaimed loudly, “OH! Tickle!” (As time went on, we taught him to say, “tickle head . .  . tickle neck . . . tickle arm . . . ” and gradually kept adding names of various body parts.) After that day I realized what he’d said, he’d sit by me and say “Oh tickle!” every time, adding the “Oh” as I had done. It was so sweet. To this day, he loves to be tickled and he just giggles and giggles with delight.

I wish I could have an actual conversation with Alex. I wish he could tell me how he feels about things, what he’s thinking, what he hopes for and dreams about, what he wishes! No, he’ll never go to college or drive a car or become a parent. But he is still my child and our family loves him  very much, and I believe we are better people for having had this experience of caring for him.

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