‘When I found out you had autism, I’d never heard of it. It didn’t matter—to me, you were amazing.’: Mom shares ode to autistic son

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“When I found out you had autism, I had never heard of autism—I didn’t know anyone with autism, and I didn’t know what autism meant.

son with autism on the swing
Courtesy of Leasa Hoogerwerf

I honestly didn’t care…I thought you were amazing.

I didn’t know why you couldn’t stack blocks and instead, you lined everything up and spun around in circles.

It didn’t matter—I just thought you were quirky, and to me, you were amazing.

And yet doctor after doctor pushed you to do more typical things.

I didn’t know why you weren’t able to do these things, but still, it didn’t bother me.

You seemed happy and content until suddenly you weren’t—suddenly you would scream uncontrollably for hours at a time.

I didn’t know what you needed.

I didn’t know you were always so frustrated.

I didn’t know you were trying to communicate and couldn’t find your way.

I’m sorry it was so hard for you. I’m sorry I didn’t understand earlier.

Why You Never See The Real Autism…

Why do you think Hollywood will never portray our autism?  The hard…the aggressive…the mundane.

I’ll tell you why. Our autism is hard every single day.

Our autism is the same day as the day before…working on the same skills that we have worked on for months, maybe years, and sometimes never mastering those skills.

Our autism is not exciting—not to Hollywood anyway.

son at the play ground smiling
Courtesy of Leasa Hoogerwerf

Who wants to watch the life that portrays a family living the same struggles year after year?

Now if your child does something exceptional like play the piano or sing or dance, maybe, just maybe they would be interested.

In our family, when my son puts his pants on the right way or has the best day ever and earns a token, I’m yelling from the rooftops!

But the real world couldn’t care less. They just want to be entertained and want to see something extraordinary, but, you see, those things ARE extraordinary to me.

You need to understand we were told when Cody was just a toddler that he would definitely never speak and that we should institutionalize him because we were wasting our time, energy, and money.

I never believed any of the doctors. They said he would never fit into society or be capable of living independently.

I scooped that little boy up so many years ago, never looked back, and here we are today. Still together as a family loving and living life.

Cody does speak…that’s where the title of our blog comes from.

They. Were. Wrong.

He is so smart, and I don’t care about the so-called IQ tests or where they think he is cognitive. I can see he is very intelligent but the words are trapped inside. It’s as if the words are floating in his head, and putting them together to form a sentence is heartbreaking to witness, but still, we work day after day, together with each conversation, and as I wait, the words come.

I ask you this question. When you love someone and they are suddenly in an accident and unable to walk or care for themselves do you just walk away?

Do they not fit into your world any longer?

Would you not give them rehabilitation and work with them until they regained mobility?

son struggling with school
Courtesy of Leasa Hoogerwerf

It’s really no different except that Cody never had some things. He met some milestones as a baby then it all suddenly stopped one day, and just like that, I found myself researching autism.

I have spent the last 15+ years breathing and living with autism. There has never been a day not a single solitary minute where I wasn’t thinking about my son or autism.

I will never stop working with him.  I don’t care if we are still trying to master putting clothes on the right way. He is amazing and I just wish I had one ounce of his tenacity and undying love to learn. The way he never stops trying is truly something I am grateful I get to witness each and every day.

I am the one that is truly blessed by this amazing soul and his true sense of innocence in the world. I get to view the world from a different place—a place I can’t explain, a place that needs no words, just silence.

If you told me I would create a platform where I share our autism world—the hard, the real, and the raw—I would have said you’ve got the wrong person.

You see, I’m very quiet by nature and would rather blend in than stick out. I hate mixers. I don’t like being the center of attention with all eyes on me, and if you invite me to something, more chances than not, I will politely decline. I am that wallflower, and no matter how hard I try to be that ‘other person’—the one that speaks so well, the one that has it all together—I’m not that person. I’m me.

I definitely don’t know everything—all I know is what I’ve lived, and I’ve shared that.

I love being home alone deep in thought thinking about the why and how I got here. Why me? I’m not sure I can do it most days and yet each and every day I forge on.

Tenacity…but sometimes nothing more.

On the hardest of hardest days, when I think I have nothing left to give, not one more ounce of patience, the next morning there you are looking at me, and there once again my heart is filled, I have patience, and together we begin our day once again.

We chose long ago to give you, my son, the very best life, and that’s not in the way of monetary means but instead, we gave our life to you.

We give you all our love.

We give you all our undying patience.

We give to you everything and anything without any questions or expectations.

It’s something I will never regret.

‘When you do the right thing even when no one is watching…beautiful things happen…'”

woman and her son at a pumpkin patch
Courtesy of Leasa Hoogerwerf

This story was submitted to Love What Matters by Leasa Hoogerwer from Southern California. You can follow her journey on Instagram and Facebook. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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