How do I Explain Autism…

I’ve been thinking about this for a long time. How would I explain my autism world to someone with no experience with autism?

I have two sons, ages 3 and 5. They both have moderate autism with severe communication delays.

From a distance, or through filtered Instagram pictures, my sons look perfectly normal. Their disability appears discrete and insignificant to the untrained eye.

How debilitating could it be?

It’s absolutely devastating and almost invisible at the same time.

My sons are verbal and I thank God for that.

A verbal child with autism isn’t the same as a typical child who speaks.

My 5 year old may say “French fries please” when he’s hungry or “book store” when he wants to go to Barnes and Nobles but he has NEVER asked me a single question.

PARENTS OF TYPICAL CHILDREN, STOP READING AND LET THAT STATEMENT SINK IN FOR A MOMENT. Think about the hundreds of questions your child asks you on a daily basis and imagine that NEVER has happened.

We have never had a conversation.

When I pick him up from school he doesn’t tell me about his day. He doesn’t say anything.

Well, that’s not true. He’s constantly humming, yelling, singing or listing.

It’s the loudest silence. There’s constant noise with almost no content.

I have two sons who I’ve never spent more than a week apart from and I don’t know their favorite colors.

I don’t know what they want to be for Halloween (I guess). I don’t know why certain things make them laugh or cry.

I don’t know when they have a toothache.

My 5 year old son’s cheek started swelling. He started crying. He had a fever. He developed an oral abscess.  had no idea he had a toothache. He must have for a while.

The communication deficit alone is debilitating. There is nothing I want more in this life than to have a conversation with my sons.

We are constantly on high alert. Our boys have extremely poor safety awareness.

They would run in the middle of a busy street without looking, run off and not be able to verbalize their need for help. We take them to zoos, parks, museums, etc all the time.

Always 2 parents, 2 kids. I would never take them both out by myself.

We are always watching like a hawk. There are several things that are stressful in a public environment.

First, we are always worried about elopement. Will they run off and we can’t find them and they can’t ask for help?

Secondly, as they’ve gotten older and bigger we worry about them pushing, shoving or unintentionally hurting a smaller child.

Thirdly, we always look for ways to avoid meltdowns. Always looking for ways to ease transitions. Constantly thinking 5 steps ahead.

We are exhausted no matter what happens but we believe it’s imperative to keep them engaged with the outside world in an attempt to reduce rigidity.

We worry about the future all the time.

Our kindergartener cannot read, cannot write, cannot adequately communicate, is not fully potty trained, cannot ride a bike.

I could go on and on.

What will the future hold? Will he ever read? Will he ever have a friend? Will be ever be in love? Will he ever have a job? Will he live independently?

These never ending questions are accompanied with self doubt.

Are we doing enough? Are we getting the right services?

We should do flash cards every day! We should limit screen time more! We shouldn’t let him eat fast food!

How did we not know he had a tooth ache?!

Nothing is simple.

As I’ve already mentioned, our 5 year old developed an oral abscess. YES, we have been taking him to the dentist twice a year. No, they could not get xrays ever.

We now have to see a specialist who does oral care in an operating room where our son will be under general anesthesia.

Our son went on antibiotics for the abscess and the lengthy process of insurance approval and obtaining an appointment is over two months.

Meanwhile our son has to live with a toothache from a tooth that needs to be extracted.

Yes, we know no child likes dental work. The difference is our child CANNOT tolerate dental work.

He cannot sit still and follow directions. A typical child won’t like it but they can do it. That’s the difference.

All I’m trying to convey is that it’s really hard. It’s really stressful. It’s really lonely. It’s a big deal.

Our sons have autism.

Their futures, their potential is unknown. It’s scary. It’s our every day.

We live moment to moment. We embrace different. We celebrate little milestones.

We love our boys. You don’t know it if you don’t live it. How could you?

I hope this little glimpse helps you understand and have compassion for those living in the special needs parenting world.

Written by, Heather Nelson

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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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