But she looks like everyone else

Article By: Sarah Seymour
Article Date: 01/10/2007

This article will be published in Today’s Parent Magazine in March 2007

“But she looks Normal…”
Parenting a child with an invisible disability
By Sarah Seymour

We are in the entrance of IKEA, my seven year old son Zane, my three year old daughter Eowyn, and me. Zane and I have been looking forward to picking out bedding for his new room that he doesn’t have to share with his five year old brother Marcus. Everything is going well; Eowyn is even walking holding my hand.

We go through the sliding doors, and Eowyn suddenly becomes a different child. Instant screaming, her high pitched wail, her hands over her ears, her hitting her head on the floor. When I try to pick her up, the 27 pound toddler attempts to launch from my arms and hits me in the face. With Zane attempting to hold the cart still (curse those multi-directional swivel wheels) I manage to jam her legs in and hold her in the seat as she thrashes about. She hits her head on my shoulder and her little nose begins to bleed. I hang on for dear life, rocking her back and forth and whispering in her ears “It is safe, it is safe” Zane looks bored by the whole exchange. After a good 5 minutes of struggle I feel her little body relax against mine. I look up for the first time since entering the store, looking for a washroom to clean us up, only to see the shocked and disapproving stares of three couples. I spot the washroom, and trying to shrug off the obvious glares at the world’s worst mother, I wheel the cart towards the washroom.

Behind me I hear a shriek. I turn around and spot a little boy, not much older than my daughter, being led into the store by his mother. He obviously has other ideas about going through the sliding doors, and I watch as mother picks up the screaming boy and manages to get him into a cart. The woman standing closest to me says to her partner. “What patience that mother must have, he looks like a handful.” I glance around and am surprised by the sympathetic looks from the same people who were just glaring at me. I look again at the little boy, and I understand. He appears to have Down syndrome. He is now happily playing with the seatbelt, and his mother is working her way to the elevator.

My daughter, blood on her cheeks, pig tails askew is still rocking to herself in the cart. I fight back tears as I wheel her into the washroom and wet some paper towel.

My daughter has Autism, a neurological disorder which affects the way she processes information. New places scare her, and to calm herself, or make herself feel safe, she resorts to socially unacceptable behavior for a beautiful normal looking little girl. Who knows what set her off that morning, we have been to IKEA many times. It may have been the new display in the entrance which was all white. Eowyn is happiest surrounded by bright colours. Stark white makes her nervous. It could have been the ceiling fans were on, and the air on her skin was unsettling. It could even have been something as simple as the fact that often when shopping, she gets in the cart in the parking lot, and we were disrupting her routine. Regardless, Eowyn did not feel safe, and her brain did what it does to protect her, to try and make sense of her surroundings.

Why was my daughter’s behavior glared at, while the little boy’s behavior was passed off as being a handful? I am by no means saying that he deserved to be treated any differently than he was, but the truth is quite simple. You could see that there was something “different” about this sweet little boy. It didn’t require asking any questions. Simply by looking at him you could tell he was not the same as a “normal” kid.

My daughter has beautiful big brown eyes, and long blonde hair. She has a beautiful smile, and on this occasion was wearing a sweet little outfit with a matching hat. When people first meet her, if she is happy, it is not apparent that she is different. Her horrible tantrums make her look like a spoiled child who is acting immature. I am obviously a bad parent who does not discipline my child correctly. Sometimes people just glare, but occasionally they are foolish enough to comment in my hearing about my inability to parent. I am usually able to restrain myself enough to calmly explain that she has autism, but there have been times when I have lost my temper. My little imp of a girl can not help herself, and those tantrums are her way of communicating.

At a hockey practice a grandmother sitting 2 rows behind me was loudly informing her son that if he had ever acted like that he would have been marched out to the car and dealt with. This woman caught me on a bad day, and I turned on her as only a mother can. “Thank you for sharing your views on parenting, you obviously are intending for me to hear them over my daughter’s wails. My daughter has autism, and she is screaming because today the light above us is flickering, and that drives her crazy. She can’t talk, so this is what she does. If you have a problem with it, I suggest you sit somewhere else for the rest of the season because I want to watch her brothers play, and we aren’t moving”

Thinking back to that moment as I am standing in IKEA, I wonder if I should have barked at those glaring individuals too. It would have made me feel better, but would it have changed anything? There are days when I want to put a shirt on my daughter that says “I have autism, get off my case”. I think that the label would make people more tolerant of her differences, and perhaps make them think twice before judging others.

I know that being Eowyn’s mom has changed the way I view other’s actions. I am not as quick to judge, and I think I am more willing to help. I believe that my daughter has made me a better person, except for my occasional attacks on critical bystanders. As my husband points out, Eowyn doesn’t care that people judge her, she doesn’t even care one tiny bit. It is my problem. He is right; of course, I must begrudgingly admit that I am the one who makes a big deal out of it. All my daughter cares is that I am there to hold her and whisper “It is safe, it is safe” and rock her back and forth, no matter where we are.