It was a hard pill to swallow… coming to the realization that my kid, my child, my baby might not be “normal.” That he might need more help than other kids to succeed in life… That he might always need assistance to perform everyday tasks.
My twin boys were born early, and they had a really hard time in their early months. Ever since, they’ve been delayed. Knowing their risks from spending so much time in the NICU, I immediately enrolled them in early intervention and took them to a variety of doctors and specialists. But in the back of my mind, I always thought they would “grow out” of it. But they didn’t.
Now they’re almost four. And I realize some of the mistakes I’ve made along the way. (Man-oh-man, I’ve made a lot!) Not pushing for autism testing early-on was one of those mistakes. So, in an effort to help other parents who may be traveling along similar paths, I want to share my thoughts about the stigma behind receiving an autism diagnosis.
An autism diagnosis doesn’t GIVE my child autism.
Since they were babies, my twins ALWAYS scored high on their M-CHATS, which is a screening tool for autism. Now at age four, one of them CLEARLY doesn’t have autism, but is still very delayed in speech. The other one, Julian, is completely non-verbal with some other autistic characteristics.
If I could get a do-over, I would’ve had them both tested for autism right away. Early intervention was great, but limited. The same was true of outpatient therapy. Think of how much farther they could’ve come with in-home therapy everyday! (insert picture of me kicking myself) An autism diagnosis doesn’t hurt my child. It only helps me, as a parent, acquire more help and services.
What if it’s something else?
It’s hard not knowing why Julian won’t talk. I know there are some children who have classic symptoms of autism, but not him. I’m still on the fence about his diagnosis. Autism isn’t curable, so that’s not the direction I wanted to go. (A condition with a magical pill would’ve been nice.) I found myself saying things like, “I don’t want him dumped into the ‘autism trash can’ because they don’t want to look anymore.”
But the bottom line is this: No matter what’s actually going on in his brain, I know my little one needs therapy. Now that he has a diagnosis, his therapist comes to him! Not only is that more beneficial for him, it saves me time, gas, and a major headache. And that’s just the tip of the iceberg when it comes to the benefits of a diagnosis. I wish I had access to those services earlier.
I won’t stop pushing for more answers until I feel confident about Julian’s diagnosis. But until then, I know he’s getting the best services available.
I don’t want my child labeled and put into a special class.
First of all, WHO CARES about a label?!?! If I were on a deserted island for the next ten years, would I want to help Julian connect with me? Would I want to help him talk, function, and thrive? Of course I would! So I can’t let the pressures of society keep me from giving him all the help he needs.
Secondly, I have to remind myself that I’m the one in control of his care and education. For a while, I was hesitant about ABA therapy and autism classrooms. I heard horror stories about kids being strapped in a chair. It scared me… a lot.
But here’s the fact: If I’m not comfortable with Julian’s care, I can change it. Plain and simple. I am his advocate. I am his mom.
We will surely hit bumps and roadblocks along the way, but having an autism diagnosis has made the ride a lot smoother.