Reality Bites

I have 3 beautiful children. Ethan 13 and Gavin 9, have been diagnosed with Level III Autism, without intellectual impairment. My youngest Moira, 3, is just lacking that official stamp.

Gavin showed textbook signs, lining up cars in perfect rows, total organization, sensory overload, late speech, I think I was ready for him, but I never quite put the pieces together with Ethan.

Looking back I should have seen something. All the signs were there, but as a first time Mom you think, you’re overreacting.

He NEVER wanted to be held, even as a baby, always in motion, he would throw a fit if I tried to cuddle. Then tantrums began, he would hit me, scream horrible things, like he hated me and I wasn’t his Mother.

I remember the day I knew I was not just a bad mother. After months of calling my husband every night crying about how I had to lock him in his room to keep him from destroying things or hurting me, it finally happened.

I can clearly remember the moment.

Ethan had been so upset about going to school, crying every night. Oh and the homework fits. Not high school homework, but 2nd grade math problems and spelling.

That night he stood at the top of the stairs and screamed “I don’t know the point of living, I can’t learn like other kids, I can’t be them.”

The next day we made an appointment and began the lengthy diagnostic tests.

A few long weeks later I sat in a room with a doctor saying autism and not hearing much after.  She asked me if I was OK, then said “autism is a gift, we just have to teach our kids how to use it”.

She has autism herself or else I might have punched her.

Her “gift” felt like Pandora’s box.  It was a weird feeling, some relief that I didn’t just parent wrong, but then fear.

While high functioning, his autism rears its head in school and socially.

I started reading about autism and his behavior matched.  His “freak outs” as my husband and I affectionately call them, can be triggered by change.

If we say we are going to the store, to eat and then another store, but switch the plan up, you might as well just go home. Or better yet, give him an unannounced substitute teacher, consider the school day over.

Sometimes anger at noises when he tries to concentrate, even me breathing or swallowing would cause a panic.

Getting in trouble for his actions but the teacher not punishing another student who misbehaved, I call this his “justice syndrome”, all hell breaks loose. He may not say anything during the day, but later at home all the emotional and sensory overload of the day, any simple command brings WWIII.

And the rolling on the floor – his stimming.

This is why many parents never think it’s their child.

They think of the textbook autistic kid on TV and the movies.  Rocking back and forth, hitting their heads on something.

Well not every kid does that, some flap and spin, some, like Ethan drop to the floor and roll around.

I thought it was just a tantrum, until continued thru Kindergarten, 1st grade, then 2nd grade.  I remember listening in on ABA therapy.

The therapist made him mad enough to start rolling around then asked him what he thought the other kids in his class thought about him.

He was so confused, he could not understand why what he was doing would affect anyone else, it was just him, in his own world.

That therapist was wonderful, she took him to a mall and stopped and started rolling around on the floor.  He suddenly understood.

Does he still stim?  Yes.  But he can redirect it to fidgets and other things most of the time.

With all this, his autism still didn’t seem real, so many “are you sure he has autism”  you start to question it.

My Ah-ha was after months of smooth sailing having my Mean Ethan immerge.

His trigger, about 5 math questions.  I swallowed too loudly, his brother played too loud, the pencil broke, he called himself “stupid” and ripped up his homework.

He threw things at me, would not let me hold him, veins popping out on his forehead. We had our break, the autism took a vacation.  But all at once that scary world came back.

Three hours later my son hugged me and said he was sorry, I looked at him and he softly said, “I hate that I have this, why does it have to be so hard”.

At that moment I knew it would always be there, this menace lying dormant until it strikes out of the blue. 

That night it was because a “friend” didn’t talk to him in 1st period.  But he knows it’s there too and that’s what breaks my heart.  He has to fight it so hard.

He can’t just be a kid.

But it’s our life. Wondering when the next storm will come.

Planning our outings based on the likelihood of a “freak out”. Envious of the other parents with seemingly perfect kids. Wondering what we did wrong, and heartbroken that there is nothing to fix them.

As parents we think we can fix the booboos. With autism there is no Band-Aid big enough.

Written By: Marj Hopkins

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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 our journey. You can also follow us on Facebook and subscribe to our newsletter.