The Fight We Shouldn’t Have

If I’m doing this right, there’s one thing you’ll start to note about our little Autism world here: Time seems to pass quickly, and yet slowly, all at once.
Having been born prematurely (at 24 weeks, to be precise – thanks a lot, HELLP Syndrome!), our boy faced a world of challenges to overcome, before he ever even opened his eyes. See, we are all born with the ability to do those little things like breathing, eating, and swallowing, to name a few. But when you make your entrance into the world so abruptly and so, so early, those things don’t come naturally. They are learned.

Let me say that again, louder, for the people “in the back”… Beckett had to LEARN to survive. Learn to live.

After four excruciatingly long months in the NICU, our sweet boy finally got to come home with us! Braced with the brief information that we should more than likely expect delays in his development, we put our “parent pants” on, and held our breath.
We (not so) patiently waited as Beckett came up on milestones like laughing, babbling, crawling, eating solids, sitting, walking, embracing imaginary concepts… and though every one of them was delayed, they all came.

Beckett hit each milestone, all in his own time. We often joked that it was just “when he saw fit”.

But at the age of two, development changed. Milestones seemed to be slipping away, not long after they appeared. Vanishing, like a magic trick.
Beckett became a “picky eater”. He grew disinterested in “playing” with toys, and began using them as a simple comfort.

A model truck. A stuffed giraffe. A mega building block. A faux flower.
They came and went in his rotation of objects that went EVERYWHERE with us.
Endearing. Adorable.

And then our list of 15+ words? They slowly disappeared; never turning into sentences. What was once the sweet sound of “Mama” or “Da-Da” quickly faded into the tug of his hand, or the squeal of his frustration.
We filled out all the instrumental diagnoses “check-lists”, the questionnaire’s; We even all but pleaded with various professionals to “just TELL US” if this was some kind of disorder, or if it was simply symptomatic of his prematurity. Our little baby was SO happy. So blissful. So content. But he was not progressing like his peers.
Those questionnaire’s, and doctors, and nurses had answers, though the feeling of comfort was but momentary.

…Then came the all-consuming thoughts and the late-night couple’s worry sessions:

When was the last time he used his words?
Is he ill? Are we doing something wrong?
Is it because he is home with me? Am I not doing enough?
He was just too early… that’s all.
It can’t be Autism… Right?

We knew that something much bigger than we could then understand was taking place. We are going backwards, like one of those terrifying roller-coasters, where you can’t see a thing.
We asked, and we pushed, and we insisted. And finally, someone listened. One doctor heard my cries of concern. All I wanted was help. I needed my child to be “seen”. For someone to say “I see what you’re saying. I see you, and you’re not crazy. Let me help you.”.
It is the strangest feeling, to feel as though we had to “fight” for a diagnosis. For a “label” that no one wants their child to have to be challenged with, in order to obtain services that I didn’t want him to need.
Did you catch all that? It’s like the ultimate brain melter.

So what’s the very first hard lesson we had to learn? Push for your child. Make noise. Raise your own bar. Insist, make demands when it will only benefit your child, and don’t take no for an answer. Be the advocate, even when the light to “what for” is still dim.

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I’m a Mama to a preemie miracle little boy, on the Autism spectrum. A loving wife of US Navy Veteran. A Blogger. A chaser of naps. And a lover of all things caffeinated.

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