Things I Would Have Told Myself to Prepare for Autism – Finding Cooper’s Voice

Autism Spectrum Disorder became a constant companion in our life one April day a five years back. I think back to that day and realize both how naive and how unprepared I was for the journey ahead. There are a lot of things I would go back and tell myself on that day that I sat with tear-filled eyes not knowing which way was up.

These are just a few I would tell myself or a new mama sitting in the dark with a fresh diagnosis…

First, take a deep breath. It is going to be OKAY. 

It will be okay…whatever your version of okay looks like. It may be filled with therapies and mountains to climb and IEPs and challenges and hard moments, but there may also be times that it may be smoother with fewer interventions needed. However it looks at any given moment, guess what? You will adapt and you will learn and you will grow. Your children will thrive and you will all be okay.

We’ve managed to find our stride and roll with the punches. Is it all how I originally pictured life? No, but isn’t that life in general? You know what they say— you wanna hear God laugh, tell Him your plans.

While it might feel like it because there’s this label hanging over their head, know that your child has not changed. 

The world might look and feel a little different right now and that is okay, but your baby is still your baby. Both of my boys are on the spectrum and both of my boys are still the same happy, loving, and adventurous boys they were before a doctor ever uttered the diagnosis that felt like it changed everything. It really took me a minute or two to get that through my head, but it was a valuable lesson to grasp.

Your child has autism, but it does not define them.

Autism is a part of my boys.

It is simply one facet that makes up their whole. It doesn’t define them.

They have autism. Autism does not have them.

They are smart because they are smart and they come from good stock. They are funny because they are funny whether or not intentionally so. They are kind and loving and they are the stars in my universe because they are them and not because of or in spite of any diagnosis.

Let go of whatever preconceived notions you may have because it is true that if you have met one person on the spectrum, you have really only met one person on the spectrum. 

Yes, there are some shared characteristics. Yes, there are common ways in which autism manifests itself in people. But, just like you or me or the person next door, all people on the spectrum are unique too.

My two boys are very different and their autism looks very different as well. It presents in different ways and needs different supports in both of them. They are unique.

Just because your cousin’s neighbor’s sister’s friend has a child with autism doesn’t mean they know every child or what they need. There simply isn’t a one size fits all approach.

You will become a subject matter expert on your kids.

Just because I am a mother with two boys on the spectrum doesn’t mean I am a subject matter expert on autism. Shoot, I am far from it.

What I am an expert on is my boys. I know what works for them. We’ve worked hard to make progress and to find the right diet of therapies and we continue to work with our team of doctors, therapists, and teachers to meet them where they are.

I know what makes my boys laugh or cry and I know when a situation is too much for them. I’ve learned to see a meltdown coming from a mile away. It’s a constant ebb and flow and rolling with the punches and adapting.

Autism looks different in both of my boys. What works for one doesn’t necessarily work for the other. It will be a constant companion in our world and the only consistent will be that needs will evolve as we learn and grow. We’re figuring it all out as we go.

But you know what, we’re all going to be okay.


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