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.

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The Hitting Has Begun

13342959_1342236069120183_2382830390327838836_nI have been blogging about Cooper for a few years now. Since the beginning I’ve received more emails than I can count from autism parents who have teenagers. The emails always start the same way. They say they have a teenager who was just like Cooper. And they tell me about the diagnosis and the process and the where they are currently in the journey. And then they go onto tell me that their daughter or son started hitting and kicking and exhibiting really aggressive behaviors.

I’ve read enough of these emails to know how they end.

These parents had to make the heartbreaking decision about what to do once they behaviors got to be more than they could handle. Do they keep their child home and hire care? Do they quit their job? Do they home school? Or do they find a ‘home’ or facility that their child can go too.

These emails kill me.

I can’t imagine the weight of that decision. Just thinking about putting Cooper in a facility causes me to tear up. It makes me physically ill. But I told myself I wouldn’t have to worry about it. Cooper had zero aggression. He was sweet and loving. We were safe. I wouldn’t be faced with that decision ever.

Then two weeks ago Cooper started hitting me. Like, really hitting me. Mostly in the face. No matter what I asked him to do I would get a slap to the face or a kick to the stomach. And then it started happening at stores and in front of other people. That’s a game changer. People take notice of a kid hitting their parent. Or hitting their brother in a really aggressive way.

There is no hiding it. Unless of course we hide in our home. Which I try to avoid.

The hitting and kicking are impossible to deal with. I don’t know how to react. Disipline doesn’t work. Hugs don’t work. It’s almost like hitting is who he is now. SCARY.

Here is what I know:

1.) These behaviors happen when I remove him from his comfort zone…whether that be an actual place OR challenge him to do something he doesn’t want to do. For example he ALWAYS hits me at grocery stores. We will be standing in the checkout line and he will hit me in the face. It’s embarrassing and loud and it hurts. He hits me a lot at school drop off as well.

2.) He is rarely hitting to be mean. He is laughing and being silly. In his own way he is probably playing. You can even see the silliness in his face.

3.) Disciplining does nothing.Every time  I discipline for hitting it is like the first time. There is no recollection of ‘why’ he shouldn’t hit.

4.) He doesn’t know the difference between giving a loving touch and an aggressive touch. And that is sad. Really sad.

5.) I’m not going to be able to handle him much longer.

I put in a call to his social worker and told him what was happening. He told me about a group that will come into our home and give me ideas on how to combat the behaviors. Sigh. I really thought we could avoid this.

I never pictured a day when Cooper would be aggressive. It’s so new I am hoping it just goes away but…deep down…I know it’s not going too. This is most likely the next phase. Nonverbal kids…teens…people…get frustrated and MUST find a way to communicate. And often it comes out in the form of aggression.

Nonverbal Autism

I say the words ‘nonverbal autism’ daily. Cooper isn’t just autistic…he is nonverbal. It adds another layer. A really difficult layer. It adds severe frustration. It adds yelling and screaming and sometimes scary, loud noises. It adds a lot of head hitting. And mostly it removes a lot of layers of simple every day interactions.

I will spend minutes staring at Cooper and wonder what he is thinking. Wondering if he is happy. Wondering what he would say to me if he could. Wondering if he understands me.

Talking devices aren’t covered under health insurance and they cost right around $5000. Before Cooper I had no idea how something like this could change a families life. Now I see it in the same category as glasses or hearing aids. 

I watched this video and cried like a baby at work. I simply can’t imagine what life would be like if Cooper could truly communicate with me.