Great Expectations in the Secret World Of Autism
written by Joanna McGowan
I love to celebrate my child but I will never celebrate autism. And, it is one thing to view autism as simply a brain working differently, but it is another to shame and vilify we parents who actively seek to address the medical issues and minimize the struggles of our children. So sometimes it is necessary to shine a bright blue light on the secret world of autism.
One time years ago I was at away on a work trip. I mentioned something about how it is difficult to leave because my husband has all the kids and, you know… autism. One of my work friends suggested that maybe my high expectations were just too high.
She didn’t say this with any malice and I know that she meant well. She was giving me what she thought might be helpful advice, from a seasoned mother to a newer mother.
But it still felt like a punch in the stomach.
Christopher was about 5 at the time. He was not potty-trained. He had not uttered a single word since his regression at 14 months of age. Frequently, he would wake up screaming in the middle of the night, rolling around on the floor as though he needed to get out of his own skin, while my husband and I felt completely helpless.
I was exhausted, rarely sleeping through the night and spending days researching his medical issues and driving him around to therapies. I was going broke trying to pay for therapies and supplements and doctors. Both Christopher and I were working so very hard. To have all of that minimized to my too-high expectations was nothing less than crushing.
But I don’t blame her. Why would this friend think otherwise?
The autism on television shows usually features quirky high-functioning kids who just need the world to adjust a little better to their thinking. The news features feel good stories about sports inclusion and schools blowing bubbles for autism. And we autism parents trudge along pretending everything is fine and trying to look like some version of normal to the outside world. Rarely is that office “How are you?” greeted with, “Well boss, I’m actually doing pretty crappy. My wife and I spent the night scrubbing shit off the walls while our kid banged his head into his headboard until 4am. When I get home I’ll be patching the holes in the wall… again. But at least he hasn’t had a seizure in a few days. My wife just sold her engagement ring to pay for more therapy. Fingers crossed that the bank doesn’t foreclose on our house this month! And you?”
And if you’ve read the lovely Welcome to Holland poem (https://www.emilyperlkingsley.com/welcome-to-holland), well then you probably think of autism as exactly that – a change in expectations. But that is not the reality for us or for many of those we know here is the real autism world.
The reality is often children is constant pain who are functioning at the level of toddlers. Aggression and meltdowns and seizures. Mothers who give up careers, friends, and any semblance of a normal life to care for their children – forever. Fathers working multiple jobs just to stay afloat. Parents who can’t fathom what will become of their kids when they die. And sometimes, the reality is much darker. Violence and hatred against our children. Master escape artists who wander and drown. Accidental killings by police. Murder and murder-suicides because families can no longer cope.
I don’t think my expectations are to blame for the difficulties autism has brought to my life. The expectations I held weren’t of a perfect child, an ivy league education, a successful career. They were the hopes of my child having a friend, of hearing him say “I love you,” of knowing his hopes and fears and dreams. In fact, all I’ve ever wanted for my children is for them to be happy, healthy, and kind.
I’m not giving up on those expectations, by the way. I will keep working and fighting for Christopher, no matter how difficult it is. But it would be easier if people understood what severe autism really looks like.
Joanna McGowan is the mom of 3 awesome kids, including one with severe autism. In addition to being an autism mom, she is a blogger, yoga teacher, school counselor, and terrible housekeep. She is passionate about nontoxic products, natural remedies, and healing the symptoms known as autism. You can find her at her website Holistically Whole (HolisticallyWhole.com), on Instragram (https://www.instagram.com/holistically_whole/), and on FaceBook (https://www.facebook.com/HolisticallyWholeLife/).
