As I watched him do this my thoughts were always the same...
‘Look at how well he concentrates’
‘Cool, it’s like he has a photographic memory!’
‘Someday he’s going to be an engineer’
Later, sitting in a windowless office with pea-green walls and dirty carpet I heard the word ‘autism’ and was smacked over the head with the giant Duh mallet. Of course that’s what it was, it suddenly made so much sense. I felt so incredibly stupid and worse - intensely, unforgiveably guilty. Why hadn’t I seen it earlier? My mind raced through the previous two years with a montage of my mistakes... all the behaviours I had misinterpreted, the ways I had misunderstood his attempts to communicate.
Most of all I hated myself for not having had the guts to trust my own instincts. For doubting what I saw happening before me, believing instead that everything I had read about parenting surely must be true.
Babies love faces.
People who turn away when you talk aren’t listening.
A hungry child will not starve himself.
Tantrums are a fight for independence.
All children understand No.
These were the unquestionable laws of nature, on the lips of every well-meaning friend and filling the pages of Here’s How You Parent and Babies 101. There was nothing wrong with Max, these laws dictated, he was just stubborn. Naughty. Willful. So I needed to be firmer, set more boundaries, dispense more discipline.
Everything I tried failed and yet I still ignored the protesting voice in my heart even when it finally climbed up through my lungs and grabbed me around the ears, shouting ‘These rules don’t apply to him, can’t you see that?’
But no, I didn't see. So much of his behaviour back then was a mystery to me. Some of those mysteries were solved simply by being diagnosed, others revealed themselves gradually as my understanding of autism grew.
Now that Max is older and more capable of articulating how he feels, a random comment from him will trigger a lightbulb moment where that long-ago behaviour will suddenly fall into context. Like today when he explained that he used to scream when a video ended not because it was over, but because he was scared of the static that would play if I didn’t turn it off quick enough.
My mind immediately offered up a guilt montage of all the times I had told him off for being upset that his show was over - how could I have so totally misunderstood?
In the early days that guilt was overwhelming, like a punch to the chest that was so hard I couldn’t breathe. The difference now is that I have a second montage, one filled with years of smiles, laughter and successes to go along with every memory of my failures. And it’s a small comfort that the guilt has served a purpose - over the years I used it to drive me towards a better understanding of Max, and there were definitely times when it kept me from giving up altogether when the challenges seemed impossible.
So. Today I hug Max (in that special way that he likes) and offer him Silent Apology #3407 before sending him off to learn some Math. Because like I said, someday he’s going to be an engineer.
TIPS FOR DEALING WITH GUILT
Here are some things that might help if you find yourself grappling with guilt following your child’s diagnosis.
It’s okay to be pissed that things are hard
Ignore the pressure to be okay with it
Figure out what it is that you feel guilty about
Make peace with it
Do better now
Other posts you might like...
6 Tips For Surviving Meltdowns