Happy Holidays from Light Up Columbus

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Happy Holidays for Light Up Columbus

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On the Spectum: A story about JP

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My name is Leanne. I’m another one of Stroller Strong Moms’ instructors, and I have two boys, JP (3.5 years old) and Calvin (2 years old). I don’t really know how to make this story short! Autism isn’t really a “short story” kind of thing.

Let me start by saying that choosing to share our story was a difficult choice for me. First of all, JP is mildly Autistic, so our journey hasn’t been nearly as difficult as so many other people’s. I don’t feel our story is all that significant, I suppose. Secondly, we try not to tell people we don’t know that JP is on the Spectrum. For the most part we keep it pretty quiet because we don’t want Autism to become an excuse for bad behavior or for anyone to treat him oddly or look at him differently. But perhaps people will stop treating autistic children differently if they hear more stories like ours. 

When JP was around 2 weeks old, our pediatrician told us that he had never seen a baby so young that seemed to be able to focus his eyes so well to “track”, and around 2-3 months old, that his gross motor skills seemed advanced. Being new parents, we obviously assumed we had given birth to a genius. 

He didn’t babble much, he was a very sturdy, solid, deliberate baby. There’s no other way to describe it. He made intentional choices and movements from a very young age. He took his first steps one night–5 of them– and by the next day could clear a room. He was not even 10 months old. 

When he was around a year old, I began to notice his peers creeping ahead of him in speech. He could only make 3-4 consonant sounds, but rarely used them. He mostly used the sound “ah” in different contexts to communicate. I expressed a little concern to his pediatrician and was brushed off. 

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When he was 15 months old, he broke his leg. It took us almost 7 hours to realize something was wrong because he wasn’t doing much more than whining as though he was tired. The day he got his cast, he was up and walking that evening. The cast came off for a check up and the doctor was astonished to find that JP walking in a cast that was not set for walking had caused the skin on his heel to slough off almost to the muscle. The doctor said he didn’t understand how JP hadn’t complained and that he must have an unusual pain tolerance. 

We also at this point noticed that he was fixated on trains and cars and would frequently find lines of them around the house in random places. 

By his 18 month well baby, we knew there was a speech problem, at the very least. He first got his hearing checked, which was fine, and was then referred to speech therapy. The initial evaluation had his speech at 9 month old level, and his cognitive skills closer to that of a 2 year old. The therapist decided we must, as parents, simply be giving him things without making him ask. So we were told to stop responding to any communication except talking. Within 3 weeks JP could do little more than lay on the floor screaming. He regressed to essentially the behavior of a 6 month old and our therapist realized that there was more at play than immature parenting techniques.

Alabama’s Early Intervention Program began making bi-weekly appearances at our home, and our entire therapy team took an ABA approach with picture communication. It took nearly a month to get JP back to where he was when we started. In that time they noticed a lot more pieces of the puzzle forming– poor eye contact, incorrect use of toys, lack of initializing play/conversation, and a few other issues. At his 6 month evaluation, we were tenderly informed that both his pediatrician and therapy team believed he was on the Autism Spectrum. I was angry only because they had waited almost 3 months to tell us of their suspicions because they weren’t sure if we would be offended by the implication and pull JP from therapy. I wanted those 3 months back so we could have done more to help him!

We had him evaluated and everything came up as borderline. It could be read either way– autistic, or typical but on the slightly odd side. He was only 2, and my husband was deployed. It felt like too big of a decision to make on a child so young with only one of us present. I opted to wait one more year. 

That year solidified it. While he did even out and some of the more concerning behaviors began to ease up, other behaviors cemented themselves as indicators. He had a clear sensory problem– he feels an abnormally low amount of pain, he is in constant motion, he has issues with noises, he is obsessive about certain textures, etc. His speech is still falling below “normal” even with therapy. His social interactions are a little awkward. We went back for one more evaluation process and it was confirmed–mild Aspergers. Though now it’s simply listed as Autism Spectrum Disorder under DSM-V. 

Autism is such a multi-faceted, complex disorder. It doesn’t look exactly the same on any two people affected by it. I think most people, when they think of Autism, picture a non-functional, non-verbal, almost vegetable-like person. There is a reason it is called an Autism Spectrum Disorder. That is the severe end of the Spectrum. The other end holds children like JP. But many autistic children, if they don’t receive intervention and adequate therapy, will move closer and closer to that severe end of the spectrum. We were lucky to have crossed paths with doctors and therapists who knew the importance of over-reacting and getting early intervention rather than under-reacting and having to fight the battle years down the road, when behaviors are so much more deeply ingrained. 

JP being autistic didn’t change a single thing except giving us a diagnosis that would get our therapy needs covered, and help give him a little wiggle room where he needs it in school. The diagnosis gave us understanding, rather than fear. It gave us hope, not despair. It gave us a community of other families and an enormous database of information. We learned how to see this journey as “working with the disorder” rather than “fighting against it”. Autism is part of who JP is. And we think JP is pretty cool.

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