In one word, I describe life with an autistic toddler “unpredictable”. I’m sure that word can be used to describe life with a neuro-typical toddler as well, but the difference is that NOTHING can be expected. From one minute to the next things can change in a heartbeat.
As I said before, every child with autism is different. No two children are the same or have the same set of symptoms.
One of the big things my daughter does is something that is common in most autistic children. She toe walks, flaps her arms, flicks her fingers and spins. These odd, repetitive movements are referred to as “Stimming”. I noticed that with Bella, she stims, almost as a way to show her emotions.
Bella has serious issues with self expression. She is unable to express her emotions and can not read or sense emotion in others. An angry voice to her sounds the same as a happy one. So when she gets a surprise visit from my mother, instead of jumping around and smiling like her older sister, she’ll spin in circles and look out the corner of her eye. When something is bothering her, instead of pouting or frowning, she will cover her ears and rock back and forth. When she wants something and we can’t quite figure out what it is, she flap her arms in frustration. Careful observation has allowed us to identify which stims she uses to express which emotion. We don’t get it right every time, since it’s not a fool proof system, but it helps us to avoid meltdowns or putting her into situations where she doesn’t feel comfortable.
While we thought, at first, that these gestures were odd, or quirky, we realize now that it’s just her way of making herself feel better. Before I knew what it was, I would try to get her to stop. I worried that her spinning would make her dizzy or her toe walking would make her fall and hurt herself. It does neither of those things. So instead of stopping her from spinning in circles, we join her. It makes her smile and she doesn’t spin as long. Although none of us can last nearly as long as she can.
It does get hard to deal with sometimes, but I realize that it’s other people that make it hard. At home, she can stim all she wants too and it doesn’t bother anyone. In public it’s a different story.
Once at the grocery store, Bella was having a hard time with the loud crowd. An older woman looked over and all she could see was me, standing there with my hands over Bella’s ears, while Bella was crying and trying to rock back and forth. The look the woman gave me was that of total judgment and disapproval. It hurt at first but the more I thought about it, the more angry it made me. This woman knew nothing of what I was doing or going through. She didn’t know my daughter or her condition. I was covering my daughters ears because the sound of the crowd and the overhead PA system was incredibly overwhelming to her. It comforted her to have my hands there. She continued to try to rock, but while she did that, she would bump her head on the front cart handle. I can understand why the woman thought she saw a mean mommy pinning down her child. The first few months were difficult, but now, I’m an advocate for my kid. Strangers who don’t know her can think whatever they want. If anyone wanted to take the time to ask me what was going on, I’d gladly explain it to them. No one ever does though.
All of this has taught me that, even though it’s a long process, things can and do get better. Slowly. It really depends on how long it takes to accept that things aren’t going to be the way they were. You also have to develop a pretty thick skin in order to deal with the reactions of others. Family and friends can be your closest support. Surround yourself with people that you love and trust and it will be easier to handle.
I read a quote that I really relate too and I wanted to share it with you all. It reminds me that it’s okay that your child doesn’t quite fit the mold. Trying to force them will only do more damage.
“Autistics are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It's that you're destroying the peg.”
― Paul Collins
