What Autism Means to Me

Five years ago, two months shy before my son’s third birthday, he was diagnosed autistic.

It’s a day forever etched into my memory. My husband and I had waited two weeks for the phone call to confirm what we already knew. Though, when I got the phone call, not much changed. I didn’t even flinch. I didn’t cry. Thoughts of the future I thought my son would have crossed my mind and then slipped away never to be grieved for.

I already knew my son was autistic. He had all the signs. Delay in speech, delay in fine and gross motor skills, trouble with transitioning, obsessions, food aversions, meltdowns, and stimming behaviors. I had accepted him and the diagnosis before it was put onto paper. I knew what I wanted autism to mean for my son and our family.

I wanted it to mean happy.

No matter how autism looked for our family. No matter the hardship and struggles, I’ve always been determined to make sure my son would be happy.

To me, autism is mysterious. It’s unpredictable in the sense that I don’t know what each day will bring for my child. I’m blind sighted by the heartbreaking moments and at the same time left in awe in the teachable moments that take my breath away.

To me, autism is wondrous. An awe-filled world one can’t begin to understand unless having been touched and loved by a person who is autistic. To love an autistic person is to be forever changed. My son has certainly changed me and he has changed me for the better.

To me, autism is hard. There are days I don’t know how to help my child. Days when it breaks my heart to see him struggle. But it is in these days, love and hope see me through and guide me to be of the upmost support for my son. His quiet when his world is loud. His calm when he can’t settle. His safe space in a world not made for him.

Autism is not typical.

It’s sleepless nights.

It’s the same meals and snacks eaten every day or multiple times a day.

It’s fascinations with certain objects.

It’s lining up items or stacking them on top of each other.

It’s bolting.

It’s not perceiving danger.

It can be self injurious.

Nonverbal.

Preverbal.

Flapping.

Clapping.

Jumping.

Sounds we might not have ever heard, because only an autistic person can come up with them.

Autism is a different take on parenting.

Different approaches to discipline.

It’s routine and schedules.

It’s therapy appointments and fights for services and with insurance.

It’s IEP meetings.

You can see. It is anything but typical.

And to me, that isn’t such a bad thing. All of these not so typical things have taught me so much including, patience, strength, and hope.

Autism threw a curveball. Sure, it isn’t the life we imagined, but it is the life we never could have imagined in a million years. It’s a path of learning, loving, and getting to be taught by our own child(ren) which in itself, is a gift. It’s seeing life from a different angle and gaining a new perspective of what life is all about- like the stars, sun, and moon all being aligned and we can now make sense of the universe. It’s an epiphany. For me, at least, but I can attest to many parents who feel the same.

It’s a world where we know what it means when we say the small things are big things.

Saying a word or sentence.

Zipping a zipper.

Tying shoes.

Eating a new food.

Sleeping through the night.

Make a friend.

There’s so much more I could add to that list.

Yeah, things can be hard. Days will be hard and there will be some that are sad and heartbreaking, but never will there be a day where I will say that I would change my son.

I wouldn’t. I absolutely would not. Never.

Because in the midst of the struggles and the hard days, there are happy days, milestone days, progress days, days of celebration, days of laughter that makes my tummy hurt, days when I look at my son and think to myself, I wouldn’t trade this life for anything.

This is how it was meant to be. This is how HE was meant to be. He is happy, he is loved, and he is mine.

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