A Life Apart: Parent Perspective on Living with a Child with Asperger’s

LESSON ONE: How Aspergers May Present in Very Young Children

OBJECTIVE: Identify early warning signs

I was at “playgroup” with my son. Playgroup really means Moms sitting around trying to talk while the babies cling and cry and crawl around. Every baby was doing just that – crying or clinging. Except mine.

I will never forget what my friend said: “Oh, you’re so lucky. Look how happy he is over there in the corner, lining up the matchbox cars.” Tiny cars – red, yellow, blue – all in a row. No v-r-o-o-m, v-r-o-om noises. And so it began, unbeknownst to me at the time, a life with a neurologically impaired child.

Indeed he was happy: Oblivious to the goings on, apparently not needing me, he was very content. If someone reported that remark to me today about someone else’s child, my antennae would go zooming up. I would wave a RED FLAG: Make appointment with pediatrician or developmental pediatrician ASAP.

KEY RED FLAGS:
• Lack of eye contact
• Little interest in other children
• Verbal oddities (repetition, lack of questions, pronoun reversal)
• Unusual and perseverative interest in one area
• Lack of joint attention (not wanting to pull parents’ attention to “see what I see”.

THIS KIND OF INTERACTION, SHARED ATTENTION = POSITIVE SIGN

Playgroup continued and by now, with the babies approaching age three, there was more cooperative play and imaginative play. Or at least parallel play with some interest in peers. My son, though, was still carrying the trucks and cars, sitting by himself in a corner of the sandbox. I remember he had a Fisher-Price airport and it struck me as unusual that he did not touch the little figures. He only moved the vehicles. “Just like a boy – more interested in mechanics…,” I thought. Uninterested or oblivious to the playgroup kids, he would scream and refuse to let go of the truck when the time came to leave.

I wonder now, looking back, did anyone notice something was wrong? Was I protecting myself or did I suspect too?

The most hurtful memory for me was one Mother’s Day when we had taken my mother to the ocean and then out for ice cream. We were in the ice cream place when my son pitched a big temper tantrum. Who can remember what it was about and it was likely NOT about the flavor of the ice cream, something a typical child would get upset about. As we left the store, all somewhat flustered, my mother said that she was embarrassed to go out with us because of my son’s behavior. She never criticized my parenting directly, but implicitly there was an undertone of “If you were more strict, if you were more patient etc…”

THINK ABOUT: Can you recall any “ifs” e.g. “If you were more patient…’

We enrolled this adorable toddler in a nursery school but toilet training was mandatory, as was the ability to play cooperatively. He had neither skill and in a record time, we were asked to leave. A cooperative nursery school (parent run) seemed willing to give it a try and his lack of toilet training was not a problem. After a few weeks, the teacher took me aside and said she was worried. He did not play like the other kids. Showing no interest in them, he only wanted what was in their hands. He bit a girl who tried to approach him. Shortly after, we were the talk of the mothers at a class meeting.

Many days, I had to pry his hands off a toy, and make a hasty and embarrassed exit out of the nursery school playground. Wide-eyed baby sister in tow, I struggled with a tantruming three-year-old. He could be as stiff as a board or as limp as a wet noodle. In any case, hard to pick up and contain.
“Why couldn’t he just play and have fun like the other kids,” I’d ask myself.
What I did not know then was that none of this was his fault. His miswired brain could not cope with the transitions, stimuli and changes that the world – and I unknowingly– were thrusting onto him when he was not ready.

ASSIGNMENT: Looking Back

Buy a journal and start writing in it about the following:
Do you recall any remarks of friends or relatives before you had a diagnosis?
How did you react?
What were your days like pre-diagnosis?
Do you remember any embarrassing times out in public?
How did you get through them?