We’re like snowflakes, you and me. There are billions of us. And yet, none of us are exactly the same.
This rings true right through the paths taken, when your loved one is diagnosed with Autism Spectrum Disorder. No 2 Autistic individuals are 100% identical in their characteristics, their challenges, or their strengths.
And the biggest example I can think of is evident through communication.
It looks different for all walks of life.
Whether it be a different spoken language.
Through sign language.
PECS -(Picture exchange communication system)
Or through an AAC device -(Augmentative Alternative Communication).
When Beckett was first diagnosed, over a year ago now, we had no baseline to work from. We didn’t have any experience in the world of Autism prior. So as previously mentioned, we didn’t know what it could look like.
Early on, with each milestone that came and went, he met it. Mind you, he was fashionably late for each, but it was always brushed off by professionals as a side effect of his extreme prematurity.
Labeled “developmentally delayed”.
Like children do, Beckett babbled and eventually, he began to say single words, around the age of 12 months.
And then some.
And then at the age of 2 years-old, Beckett suddenly got quiet. He would go for a week, and then say a few words.
Then a couple weeks with a couple words often repeated.
And then we were down to “Go”.
And that one word didn’t linger for long.
I wish I had known those little words would soon disappear. I’d have filed them away in my brain to play on repeat when I got bitter, or scared, or emotional.
I can’t explain the feeling of hearing his sweet voice, and then having it melt away, almost faster than it was said. Speechless.
That was our very first insight to something (we didn’t know Autism) was going on with our little boy. At 2 years old, we started the fight of our lives. The fight for our child to really be seen.
His words completely disappeared. And the stringing together of various sounds, (admittedly heartbreaking, though it yet melts my heart, and sounds like that of angel wings to me), is what remains of his speech.
He entered the world of therapy (Speech, Occupational, and Physical) from an early age, being a preemie miracle and all, but began his more intensive Speech agenda after the speech regression hit.
Beckett’s SLP started his path, with introducing our family to PECS. This was the perfect introduction into communication for Beckett, as it taught him how to request, and show us what he wanted, by way of photographs of his favorite foods/objects. It gave us that foundation we desperately needed.
We were THRILLED. It allowed us to catch a glimpse of Beckett’s wants and needs.
Along with that, Beckett worked hard to learn the sign language for “more”.
Once this was mastered, we dove head first into an AAC device, once Beckett began his adventure into public school.
An AAC device is an umbrella term for a device used to aid individuals in communicating, when spoken language is difficult, or not possible.
The reason being, is that Beckett quickly became frustrated as PECS was ultimately limiting for him, to a point.
Think of it as if you are attempting to communicate with a loved one, and the only words you can use to get your point across are the words listed on a page. And no others.
He simply outgrew it. And though we were scared for yet another change, it was a positive! A win!
An iPad, containing various applications (one called Snap + Core), is where we are residing currently.
This has the potential to grow with Beckett. Allowing him to see pictures (much like PECS), on a digital screen, of which he can pick and choose. And the bonus… he can also learn to GREET others, tell someone when he is finished, what he needs, answer yes/no questions etc.
And the capability now exisiting for him to acknowledge others, and embrace the world is wide open. It makes my Mama heart explode. The possibilities are suddenly infinite.
He works with this device daily, at home, in school, as well as in therapy. And it drastically descreases the frequency of meltdowns, as it quite literally gives him his voice.
I can’t imagine what it feels like to be trapped, silent inside your own body.
But I can tell you that I absolutely know what it looks like.
Don’t ever be afraid of “different”. Don’t be afraid of the challenge. And don’t get discouraged if the first approach (or 3) doesn’t yet “click”.
Because somewhere in all the trials is the bright glowing answer to your loved one’s communication barrier.
And it will be the most beautiful thing you’ve ever seen.
Research. Ask. Practice patience. Advocate.
And know that you are NOT alone. 🌈
—If you ever have any questions on communication, steps to take, or AAC devices, I’m here to help however I can.—