Autism: There’s always a question

Raising a child with severe nonverbal autism is always challenging. I overthink all my decisions. Every little thing seems so complicated, even when it might not be. I often decide not do things I would love to do just because Charlie’s behavior is too unpredictable. When we go somewhere I feel like I need to know exactly how everything is going to be so I can prepare Charlie and myself for every scenario.

And there was a pond…

A few weeks ago, I decided to take Charlie on an adventure because he loves to be outside. I thought he’d love to run around in this beautiful park by our house. Unfortunately, I didn’t know there was a pond there. It was a small one but not small enough to escape Charlie’s attention. He saw it as soon as we got there and all he wanted to do was jump in it. After a few minutes of wrestling and screaming, I managed to drag him away from the pond. Meanwhile, the other kids and their parents stood there confused as to why anyone would want to swim in that disgusting pond instead of just feeding the ducks. I was hoping Charlie would forget about the water once he saw how fun the rest of the park was but he didn’t.  He spent the entirety of our time there screaming and trying to find his way into the pond. I didn’t have a good time and neither did he.

Questioning everything

I do my best to do things with him despite the anxiety of putting ourselves out there. Sadly, more often than not when I muster up the courage to step out of our comfort zone to experience the joy of motherhood I had dreamt about, autism wins.  I end up questioning everything. Was I stupid to take Charlie to that park by myself? Maybe I should have investigated the place more first to see about possible water there? But what if, for once, Charlie didn’t try to jump in the water? I won’t know unless I try. Unfortunately, these bad experiences usually leave me wiped out make me want to stay home and not confront the outside world again. I sometimes get sad seeing other children younger than Charlie talking, or running to their mom screaming, “mama”. Will I ever experience this? Am I a bad mom for wanting more from my child?

The guilt

Some people think wanting my child to talk makes me a bad mom. They think it would hurt Charlie to read my words because he’d feel that I reject him because of his autism. That’s their perspective. I respect it, I guess, but I don’t agree with it. I blame myself for feeling sad about Charlie being severely autistic. I’m always questioning my parenting decisions. Is his current speech program too much for him? Should we pull him out of preschool for more therapy? Is the Proloquo the right communication device for him? Is he autistic because of me? I’m upset he ended up on the “wrong side” of the spectrum. Yes, the wrong side.

His chances at being an independent adult are close to zero. I’m confident that if Charlie had been given the choice, he would choose to talk. You should see the sadness in his eyes when he can’t communicate to us what he wants. There’s nothing laudable about not being able to communicate basic needs beyond, “I want water”. Unless you’ve experienced raising a severely autistic nonverbal child then you most likely don’t know the powerless feeling of not being able to help your child. People should stop guilting parents for feeling a certain way about their child’s disability. Grieving the idea of a child you thought you would have is not incompatible with loving your child. Not at all.

What’s the deadline for a child to talk?

I try hard to stay positive and strong for my child. I don’t want Charlie to see me sad, and I don’t want to feel sad. I’m lucky to be raising a boy who is handsome, full of joy, and most importantly healthy. I keep telling myself that Charlie is my son for a reason. Still, sometimes the heartbreak of Charlie not even saying “mama” overwhelms me. The neurologist told us that if a child wasn’t talking by age 5, then chances of him ever talking decrease drastically. No one knows what the future holds and nothing is set in stone, but we feel the clock ticking.