My Worry as an Autism Mom and Why It Never Rests

Parenting a child with special needs is so much more than helicopter parenting. It is never taking your shoes off, being ready to run, casing every room, knowing every exit and danger, being drenched in sweat, never sitting, searching your child’s body for marks or bruises, up all night worrying, parenting. It consumes me at times. And deep down I worry that it is destroying me.

It’s not like it happened overnight. It was an evolution. I am a pretty chill person. My kids fall and I wait for the severity of the scream and their reaction before I dive into mom mode. I believe in walking it off. Letting kids fall of bikes. Leaving a little skin on the field.

That’s the person I am…or was…or trying to be with my 4 year old. But as much as I wish I could just relax and sit back and watch Cooper play I know in my heart it isn’t possible.  He is constantly in danger.

I am an autism mom. I am caring for the most vulnerable of children. I am his eyes, ears, brains. I am one step ahead of him at all times.

And because of it I am slowly driving myself bonkers.

My worry never stops. At any given time I can tell you all the given dangers in a room. I know when Cooper has something in his mouth. I know when he is going to run. I know where he is going to dart to. I count the exits. I know every item that can be thrown. My shoes are laced up. I am in comfortable clothing. And I am ready to chase my kid if needed.

Trying to describe the emotional weight of caring for an extremely vulnerable child is impossible…but here is my attempt.

What If I Lose Him…

5c9d36733b1347383292a9deb1a66b0fOne of my greatest fears is losing Cooper. He’s not necessarily a runner or a wanderer, which are traits highly associated with autism, but still….the fear is real.

Cooper will most likely not call out if he is lost. Or answer to his name. Or come running. Or even recognize the fear of being lost. And Cooper looks like a completely average little boy and his disability may net even be recognized.

So as Cooper has aged, his dad and I know that there will most likely come a time when we will lose him.

Last week I was cooking dinner and the boys were doing their own thing. Cooper was walking around watching YouTube videos of Thomas the Train and Sawyer was playing something or another. I heard the basement door open and Sawyer asked me if he could go downstairs and play. I nodded and off he went.

That’s another thing Cooper won’t do…he would never ask permission. He would see an open door and go. He would never think…’I’m going to tell my mom where I am going.’

I continued to cook and a few minutes later Sawyer came back up and asked for milk. He climbed up to the kitchen island and played. Another 5 minutes or so went by. And it was dinner time. I called for Jamie and Cooper, turned the basement light off, shut the door and sat down for dinner. No Cooper. This is not strange since Cooper will not always come when he is called. But eventually he will come back to the action. Most like when he accidently shuts our Wi-Fi off. (Disclaimer: our house is 100% Cooper proof so we trust him to move around freely.)

A few more minutes went by and no Cooper. I asked Sawyer, ‘where is your brother?’ He responds with, ‘downstairs mama.’ I jumped up and ran towards the basement. Sure as hell, there is cooper sitting in the dark, at the top of the stairs, waiting for me to come get him. He gets the biggest smile and waves as to say…’there you are. I’ve been waiting for you.’

This was minor but I was seriously panicked for a split second. The kid will not call out. I’m not even saying words…he could call out a noise. A shriek. Or whatever. But 9 times our of 10 he does not. He also can’t ask for help. He probably won’t even think to go to an adult. If he doesn’t see a familiar face he would probably just keep going on his way.

It makes me sick to even think about it.

I have another story…which is what prompted this post.

I picked Cooper up from school a few days ago, buckled him in his car seat, turned on a movie and off we went. Because he is watching a movie I can’t use the radio so I usually listen to music on my phone. Our drives due to rush-hour can be up to an hour. (I miss Duluth driving.)

I’m driving and completely zoning out and thinking about all of the things I have to do that night. The usual. About 45 minutes into the drive I glance in my rear view mirror of my Yukon SUV and Cooper is not in his car seat. I turn my whole body around and he is not anywhere that I can see him.

I screamed his name like a lunatic. No response. And I seriously thought for a split second I forgot him at school. Or in the parking lot. Did I even go to school? What day was it?

I called out again.

And then that little shit pops his head out from behind the third row seat and smiles.

Cue relief and then extreme anger.

I lost my autistic nonverbal child in an SUV. I am that mother.

Pulling over was a challenge because I was in rush hour traffic and in the middle lane. Cooper climbs back in his seat and laughs.

Once I got that whole debacle situated I was pretty shook up. I couldn’t stop thinking about if I lose him. What if he wanders away from me? Or the school? He can’t ask for help. He will be all alone.

Every week there is another story in the news about an autistic child that is lost. I usually can’t read them…but someone ALWAYS sends them to me.

I need to put more locks on the doors. And get him a bracelet that says his name and that he is nonverbal. I wonder if I should tell our neighbors about Cooper and the danger of wandering.

I’ve often referred to myself as a dancing monkey that always needs to e one step ahead of autism.

I swear it’s always something.

Here are some links for id bracelets. Check them out. I am ordering one asap.