Autism Outside the Safety Net of Home

Yesterday, Jamie pulled me aside and asked if I thought Cooper was acting more autistic than usual. I told him no. Now before you gasp at that statement, know that it comes from love. And an increase in autistic type behaviors means pain, anxiety and other areas of concern. If we see him all of a sudden head hitting, lining up objects, closing doors, etc., we know that something is wrong. And we dive in and try and figure it out. When a child is not verbal and not able to communicate pain, you look for other clues.

After Jamie asked me that I got a little panicky. I hadn’t notice anything out of the ordinary. But also, in Cooper’s seven years of life, Jamie has never asked me that before. He’s never been the whistle blower. I’m the one that sees everything. That notices every behavior. That observes every tiny, almost unnoticeable change. So, I started thinking about the past week.

Was I missing something? That’s just not like me.

Yes, he’s been waking up before 5 am again. Ugh. I’ve been feeling that one.

Yes, he’s been putting way more objects in his mouth again. Much to Sawyer’s disapproval, he’s eaten just about every Nerf Gun bullet in the house.

Yes, he’s been super stimming on my iphone, his movies and technology again.

Yes, he’s been extra busy. Lots of rolling, jumping, running, bouncing and flapping.

Yes, he’s refused to wear short sleeve shirts or even shorts that show skin. Unless he’s naked. Which is happening more and more again.

Yes, he’s been carrying more treasures around than usual. I’ve been finding piles everywhere. In my bathtub, behind the couch, on the table, on the stairs. Pieces of my boy everywhere.

Yes, he’s still putting everything we own in the bathtub. Sigh.

But, on the flip side, he’s been so happy. He’s been laughing way more. Getting my attention to show me things. He’s been really hooked on communicating with me too. I’ve been so happy lately. Almost giddy. My boy is letting me into his world. That doesn’t always happen. And when it does, I drop everything and hold on with two hands.

In a weird way, I feel like it’s like that scene in the move The Notebook where the older lady with Alzheimer’s regains her memory for five minutes. When Cooper wants to join our world, that is my focus.

Also, we’ve been moving. Our world is full of chaos right now. And Cooper has been handling it in stride.

Now in saying all of that, nothing really seems off about him right now. Honestly, Cooper’s autism is pretty severe. Every day can be intense. I know every day will be loud. It will be messy. Things will get wrecked. There will be meltdowns and anxiety. That is just our world.

I said to Jamie, ‘I haven’t noticed anything out of the ordinary.’ I asked him why he felt that way.

He said, ‘well, I had him outside in the driveway, outside of our home and the safety of the fence, and he was literally climbing our vehicles. Like throwing his pillow, blanket and treasures on top of the car, scaling it, and sitting on top of it. He never stopped moving. Not for one second. I was just shocked. I guess I forgot. Even our neighbor was shocked at Cooper being Cooper.’

I smiled.

The Cooper Jamie described is the Cooper we see every single day. Just dialed up a bit because he had the freedom of being in a new space. He was outside the fence. Outside the safety of his home. And, for the first time in a long time, Jamie saw Cooper’s behavior through the eyes of someone else. A person who had never seen the climbing, running, eloping, humming, anxiety, hyperactivity and flapping. The kind of behavior you may see in a toddler. Not a seven year old.

See, we are used to it. Quite simply, this is our life. Our beautiful, chaotic, stressful, weird, funny life.

I knew exactly what Jamie was feeling. When we go out in public, all bets are off. Cooper’s behaviors dial up to a ten. He gets louder. More aggressive. We suddenly feel like we are under a microscope. We have an audience. And yes, most of the time they are well meaning people. But, our son is loud. And noticeable. And while we don’t care, he does draw the looks.

I think Jamie forgot that feeling. It’s been a long winter in the house.

People would be shocked if they stepped into our lives. And I think they’d step right out after five minutes. I see it all the time. We are a lot. Our child attempts to climb cars, scales fences, runs for roads, eats every small object he can find, never sits, hums, squeals, flaps and hoards. And that’s all on a typical Saturday afternoon. And typically, it wouldn’t feel strange at all to us.

We just live with it. He’s naked…get him dressed. He’s outside…hold his shirt, watch the roads, never take your eyes off Cooper. We know he doesn’t sit. We know what to expect. Others do not. To us, it’s normal. To others, it’s chaos.

Jamie’s comment made me step back and realize we are either getting numb to the intensity of Cooper’s autism or just getting used to it. I’m not sure if that’s a good thing or a bad thing. Or if it’s just a healthy part of life.

Either way, every day in our world is an adventure. And thankfully, we just smile and enjoy the ride.

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.