Smooth Sailing: A Mom's Fight for Answers
I knew very early on something wasn’t quite right. From the time B could sit up, he was not as curious as other children. Instead, he wanted to sit in his excercauser for hours on end and rock back and forth. Not a fan of a swing as an infant, it seemed the ability to sort of ‘bang’ his back in the excercauser was a compulsive need for him.
As he grew into his legs so to speak, he would rock so hard that he’d even bounce the thing off the floor! Time and time again, I asked the Pediatrician for answers. The answers were always that he’d “grow out of it.”
At 13 months, I learned of a wonderful program called Parents as Teachers. Around age 15 months B was still banging and even rocked so hard, he snapped his wooden crib frame in half. He snapped a wooden rail in half with the back of his head and never shed a tear… he simply kept banging.
It wasn’t long after his crib incident that the banging progressed to denting sheet rock.
With the support of a Parent Educator, B was first evaluated at 18 months. During the progression of his development he had other out of the “norm” behaviors.
He would sit and perfectly line his rubber duck army for hours on end – meticulously placing them in very straight, very perfectly spaced lines. He couldn’t pretend play or even instigate play with toys. If you wanted to play with him, you had to walk him through what to do with it. He would pick up a toy dinosaur, for example, but he would ask you what to do with it.
It broke my heart. I just knew this wasn’t something he was going to “grow out of.” Each time he was evaluated it seemed he was being dismissed because his language skills were so developed. Yes, B has the words to communicate, but he wasn’t using them. Instead, he was expressing himself in a way that was painful and heartbreaking to watch.
After four evaluations and a wonderful experience with TEACCH, B was diagnosed with High Functioning Autism at age 3.
B’s diagnosis was honestly a relief. I’ve heard many testimonials and everyone’s story is different. For me, it was more heartbreaking to see him struggling with the banging. It was more heartbreaking to know that he was missing the simple freedom of expressive play. His diagnosis itself was not heartbreaking. I finally know what is going on in his world and I have the tools and the support system to help him.
With therapies, in-home visits, and a variety of support systems I have watched him development extraordinarily in the last year. I am overjoyed to say he no longer bangs throughout the day. There have been no more spells of breaking furniture or walls. He has even developed his own sense of imagination and can engage with friends as well as his sister.
Have all the quirks stopped? No. There will always be something inherently special about my little boy, but that’s what it is: something special.
Admittedly, I am that mother with tears in her eyes when I watch him make a friend on the playground. Every mother loves their child in a way no one else could understand. Every milestone and step of progress is something I cherish – perhaps even more because of his diagnosis.
There will always be worry about how he will fit in. I, myself, was an awkward teen suffering through many years of bullying and social stigmas. No parent wants their child to be singled out, but what needs to be understood about Autism is that it is not WHO our children are, it is simply something about them that is different.
It is quite remarkable, actually.
Some final thoughts:
Always trust your mom-tuition. When it comes to your children, they are your children and you know them best. If you aren’t getting the answers you want, keep searching until you do.
A support system is imperative in parenting children. This comes in all shapes and sizes, and isn’t necessarily family. Find someone or a group of people that will uplift you emotionally and offer support in your decisions. I have had an amazing group of friends and professionals that I could lean on throughout the last several years.
There is a distinct difference in emotional and financial support. Special diets, integrative approaches, research studies, and uncovered services are not necessarily budget-friendly. There may come a time in your story for sacrifices, and you have to know that the amount of emotional support you offer your child or has been offered to you is worth far more than any amount of money you can spend.
The best advice I’ve received? Do the best that you can and know that they will love you for it.
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