The Inevitable Perils of Comparisons

It seems every time we go out and spend time with other “neurotypical” (to use a buzzword) children, I come home with sadness and disquiet in my soul. As much as I try not to, I inevitably compare Ethan to the other kids. Everyone says you shouldn’t compare, but I find it impossible not to! My hope is that as I grow more accustomed to Ethan’s diagnosis and more accepting of his disability I won’t compare as much.

The sadness is not so much for my loss of the same depth of relationship that other parents have with their 4 year old children (although that is part of it). I feel sadness for what Ethan seems to be missing out on, and what I fear will lead to him being rejected by his peers. The other day as Ethan played on the prep playground after school, I watched as an older boy tried to strike up a conversation with Ethan. It went like this:

Older child: “Hi are you in kinder?”
Ethan: no eye contact, after a 5 second delay “yets” (“yes” – his standard echolalic response)
Older child: “I’m in prep. Do you know where that is?”
Ethan: no eye contact, no response
Older child, pointing: “Prep is in that building over there, see?”
Ethan: no response, no eye contact, climbs past the boy

My heart ached, I felt sad for the other boy who had put so much effort into that interaction and received so little in return; and sad for Ethan who doesn’t understand or respond. We have spent hours coaching and drilling him in “parallel talk” in therapy, but his ability to generalise social responses is so inconsistent.

His poor physical skills also concern me – he stumbles along, running too fast in his loose gait, trying to keep up, falling over constantly, tripping, falling off playground equipment, getting distracted, with perpetual bruising. Other people must see me as a “helicopter mother”, always hovering around him, but they don’t realise how uncoordinated and accident-prone Ethan is. And his inattention, poor visual scanning and limited awareness of safety mean that he needs constant supervision.

I want to just stop worrying about his differences and delays, which seem to be ever-increasing as his peers’ development speeds up. Lately I find myself often thinking about his longer term future as the extent of his disability becomes more evident. It is sobering and anxiety wells up – even though I am so grateful to God for who Ethan is and what a precious, sweet son he is.

Inagural Post

I've decided to join the blogger fad. In part it will be a welcome creative outlet - prior to having children 5 years ago, journal writing was a solace for me. It seems to have slipped, along with other creative pursuits I would follow - surfing, painting, playing my harp...
The more important impetus to blog is about working through my feelings and experiences in having Ethan, who was diagnosed with Autism Spectrum Disorder about 2 years ago.
My blog is titled "An Insider's Perspective" because it harks back to my honours thesis, similarly titled, that I completed in 2000. My research was an exploration of attitudes surrounding disability - and my findings were basically that a person's position with regard to disability seemed to strongly determine their attitudes about disability. It probably sounds an obvious conclusion, but it was still interesting: that people who have a personal experience with disability or have a family member with a disability, have a more positive attitude about disability and people with disabilities.
Little did I know that 8 years later I would find myself with an insider's perspective on autism. I studied Occupational Therapy and have spent majority of my career since graduating in 2000 working in the area of paediatrics. My last position before I went on maternity leave to give birth to Ethan, was in a team providing diagnostic and intervention services for children with Autism Spectrum Disorders. At the time one of my deepest fears was having a child with Autism. It seemed to me to be the worst thing that could happen - to lose your child to a disorder that impacted so heavily on your relationship with your child.
Well, my insider's perspective of having Ethan has changed my attitude about Autism. I have realised that Autism is not limiting - the diagnosis helps me and others to understand Ethan and to know the best ways to assist him to learn and communicate, but it does not define him. He has such happiness, affection, joy and ability to communicate. Our pre-conceived idea of Autism is so very narrow, that we tend to overlook the many positives our children have.