It Could Be…

Yesterday I picked up my son from therapy and I knew instantly that something was off. He was with his favorite therapist. The one he absolutely adores. As I sat in my car watching her come out of the building with him, I immediately noticed how he was darting a bit. He was pulling away from her. Waving his arms.

And my stomach dropped. I knew right then. Something was wrong.

I jumped out and greeted him the way I always do. Like I haven’t seen him in years. I grabbed him in the biggest hug, kissed him and asked how his day was.

She said he broke his communication device. He threw it in frustration. Sigh. This is the second time. As we chatted quickly, he whined and seemed incredibly anxious.

I knew.

The whole night went that way. Lining up chairs. Hoarding. Throwing. Running. Rolling. Darting away from me.

So much vocal stimming.

I breathed a sigh of relief when bedtime rolled around knowing that he would be up early. When Cooper is ‘off’ he wakes up before 5 AM. When he is in a positive place he sleeps very well and typically sleeps until 6:30 or 7:00 AM.

As I laid in bed, I began thinking about what it could be. What is causing this sudden onset of behaviors and anxiety?

I thought back over the last month or so. He’s been ‘off’ consistently. I describe it as a derailed train that can’t get back on its tracks. It’s still moving forward but not successfully. It’s quite clear that it needs a reset.

As I suspected, he was up before 5 AM. I knew the second he came in my room that he was still not himself. He immediately started stimming. Before I was even out of bed he was flapping and running in circles. So much energy. Like there is an abundance in his system. His hands were full with 20 or so treasures. Pictures, VHS tapes, DVD’s, pieces of paper, coasters, etc.  Before I could get downstairs he was lining up the chairs. Which is my trigger. I was redirecting before my first cup of coffee.

How many parents have to redirect their children before 5:15 am?

As I sat down in the living room with him I watched him adding items to his hoarding pile. Blankets, more photos, etc. Then he was taking harder objects and throwing them against the fireplace screen and laughing dramatically about the sound. He loves sounds when he is in this state. The louder the better.

His therapist arrived at 8:30 for in-home family skills. We do this once a week for an hour. After just a few moments I could tell she was surprised. Cooper was picking up objects and dropping them on his Kindle and laughing at the sounds.

This is not Cooper. We tried to work on a few skills that he has been learning in therapy. Only, he wasn’t having it. He picked up a coaster and threw it at the counter. He broke a glass.

It shattered everywhere.

I wish I could accurately describe those moments to people outside of our world. I call it relentless behaviors that I can’t seem to stop. I do a lot of chasing. I am very lucky that my child isn’t physically violent because I know many that are. But Cooper, Cooper is different. He clears off counters with one hand sweep. He throws objects that are never meant to be thrown. He knocks over chairs or bikes.

All for attention. All because it gets a rise out of people. I truly believe that he doesn’t realize the behaviors are actually dangerous. He just likes the attention they bring.

And then they were off to therapy. I breathed a sigh of relief.

Now, here I sit. Analyzing. Thinking. Trying to figuring out what it could be.

Trying to figure out the never ending mystery that is my son’s autism. A mystery that most won’t believe. A mystery that doesn’t seem to have clear answers. A mystery that I can’t seem to get ahead of. Just when I think I have a handle on it something changes. A new behavior. A new worry.

I let myself analyze of all the reasons why he could be acting differently. And I had to laugh. I could think of dozens.

I want to be clear that when my five year old has a bad day it’s because he is tired. That is how simple he is to raise. With Cooper, it could be…

It could be that he’s had too much sugar. Or red dye. Or gluten. Or dairy. Or not enough water. Or not enough vitamin D. Or he isn’t getting his supplements. Or he has inflammation.

It could be that he has a headache. Or maybe a toothache.

He could be constipated.

He could be tired.

It could be bad dreams. It could be growing pains.

It could be some rare condition that I have never known about. That some mom will tell me about in the Target line. It could be that I will throw myself into research once again. Only to find out three months from now, after the loss of sanity and money, that he does not have it. He’s perfectly healthy.

I guess he could be anxious about the move that we made three months ago although he is seemingly in love with our new home.

Or that he has a new baby brother coming.

It could be that we have neighborhood kids all over our house now. And other guests.

It could be that we are walking to the park every night and maybe that is just too much for him.

It could be that we are daring to try new things every so often now.

Or that he went camping a few weeks ago.

It could be that maybe we should never leave our house.

It could be that he has a new therapist on his team at school.

It could be that he is growing. Or learning new skills.

It could be that he is getting sick. It could be an ear infection. Even though I know it’s not. And of course he doesn’t have a fever.

It could be that it is about to be a full moon. Or that a storm is coming. Or the change in season.

It could be that it’s too sunny out. Or too hot.

It could be that we got a new air freshener. Or that I burned a candle this weekend. And the scents are bothering him.

Or that fact that we changed laundry detergent a few weeks ago.

Or that I dressed him in the wrong pants.

Or that he can’t find a certain picture or the right show on his Kindle.

It could be that we are working on using headphones with a timer. Or that he ate pizza the other day.

It could be that we are pushing him too hard. Or maybe he is bored and we aren’t pushing him hard enough.

It could be that I will spend the whole day analyzing why. And trying to figure out if something is different because autism affects every single part of our lives. It directly affects our home life. And our sleep. And our attitudes.

Or, it could be nothing. It could be that absolutely nothing is wrong with him. That this is just autism.

It could be that I am the one that is killing myself trying to figure out why when there is no why to figure out.

It could be that I will never know why my autistic son has a few good days followed by so many bad days. It could be that I may never knew why our life feels like a never ending roller coaster ride.

It could be that I will make a list of everything we need to change. And jump in so ferociously tonight that it will shock my husband. I could make drastic diet changes. Make appointments with new doctors. All in desperation.

Or, it could mean that I need to just wait it out. And that this will probably all be okay.

It could be that one day we will figure this out. And we will look back and laugh about how simple the answer really was.

It could also be that I should just give up trying to know why.

It could be that sometimes I will look at him, at 70 pounds, no longer a toddler, but a boy, and wonder how we got here. And how we are going to hang on forever. In this mysterious world that no one seems to understand.

It could be that somedays, I wonder how the world keeps going and passing us by and we are here, wondering, worrying and hoping.

It could be that somedays, I worry that this will destroy our family. That no one could make it through this and be okay.

It could be that he may never get better. That this is it. Periods of highs and periods of lows. Almost cyclical. Never ending.

It could be that this is forever.

It could be that I am suddenly so scared about this baby in my belly. That I don’t know how I am going to care for all three of my children when autism puts us in these tailspins so often.

There are so many hard parts that go into raising a child with severe autism. The emotions. The behaviors. The medical side. The financial side. I could go on and on.

But for me, the hardest part has always been the feeling of being so out of control of my own life. At the mercy of autism. I can’t fix this. I can’t always make it better. And I don’t know why it is happening.

As I sit here wondering why and how, I realize that I could just give up. But I can’t. It’s not in my nature I guess. I’ll never stop trying to figure out the mystery that is my Cooper. The beautiful, wild, confusing, exhausting little mystery that he is. He needs me to care and worry and leave no stone un-turned. Because if I don’t, who will?

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.

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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 my page!

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When my son was first diagnosed with autism no one was talking about it. Autism was hidden. I vow to change that.
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