Autism Cuppa

It’s About Who?

I remember being stunned the first time I was told, “It’s not about you and your feelings. It’s about your child.”  Eldest Son was almost two, not talking and the consensus  opinion–from the In-Laws–was he was having ear infections I was not having treated.  He had “fluid in his ears” and I couldn’t be bothered to take him to the doctor, so the story goes, and I was selfish and neglectful….blah, blah, blah.

Before the character assassinations began, if they had asked me if I thought he was having trouble hearing I would have told him no, he hears stupendously. Why would I say that?  Every time I opened  a bottle of my favorite soft drink in the kitchen, he would come running from the next room because he heard the carbonated hiss of the bottle opening.  If I opened a box of cookies or a bag of candy, he would suddenly appear.  Lest you think we were eating primarily sweets and soda as our diet, I would tell you it was only on special occasions and rarely for him.  But he was a charmer even then and he would bat his big brown eyes at me and flirt relentlessly until I gave him a sip or a piece of candy. If I did so, he would take what he wanted, smile at me and leave.

He was also what we called a “commercial detector” and would run into the TV room if he heard one of his favorite commercials (anything with a catchy jingle at that point) to see and hear it.  He’d step in front of the TV screen, watch it and go back to his toys when it was finished.

Bowing to the In-Laws wishes, we took him to have his ears checked and lo and behold, not only did he NOT have an ear infection but his ears were the most perfect ear drums of a two year old the doctor had ever seen! We also took him for a specialized hearing test at a local university. The results were inconclusive because he wouldn’t cooperate. The examiner knew he could hear just from observing him but since he wouldn’t cooperate, there was some concern. And so,  our Autism Journey began.

Of course, it wasn’t about me, it was only everyone’s concern with his development. But what WAS about me was the easy jumping to conclusions that somehow it was MY FAULT he wasn’t talking and how that made me feel.  I was a nervous first time Mom and any variation of his bowel movements or a head cold sent me to the phone and my pediatrician.  I still do not understand how it could be perceived I would not call that pediatrician if I thought he couldn’t hear.

And so it went, any time a family member had a *brain storm* as to why he wasn’t talking, I was automatically assigned the blame.  Could he be malnourished? Me, of course, not feeding him properly! He had quirky diet issues common among many kids with autism. Since we were two years away from that official diagnosis, how would I know?

My self-esteem as a parent took a heavy toll.  I stopped calling family because I didn’t want to get the third-degree as to his not talking and what we were doing about it.  Considering it was me making appointments, taking him to early interventions and all sorts of therapy, I needed all the strength and self-esteem I could muster. And listening to someone tell me I was a horrible, neglectful mother didn’t do anything to help…..me or my son. If it was truly about HIM, then why berate the one person who was trying to get him help?

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autismcuppa

Your Autism Cuppa is written by a longtime Autism Mom. A former Autism Society of America local chapter president, she is an educator and artist and has done inclusion consulting work for over 20 years. Married for 36 years to the father of her Three Sons, the eldest having autism, she wants young parents to know they are not alone. Life can be fun!

2 thoughts on “It’s About Who?”

  1. Our journey started with a hearing test too. Everyone said to get her hearing checked, because she wouldn’t respond when we called her name. I knew her hearing was fine, because she too would come running when a specific commercial came on that she liked the music. She would get upset when the dog barked too. Her hearing tested as perfect and so we continued down the road of tests with doctors and neurologists and therapists.

    Additionally, I wanted to add that I thoroughly enjoy your writing.

    Liked by 1 person

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