Sensory Processing Disorder – The “not recognized but feels so real” Disorder

As an infant, Jaxon always hit his developmental milestones extremely early. Rolling over, crawling, walking, handling blocks and picking up his food quite well. Everything was on target, except language. I remember being worried and everyone telling me that he’ll talk when he’s ready or he’s just a boy. Even the pediatricians seemed to not care or worry about it. Then he hit about 18 months and I started noticing he was a little different than everyone else his age. He still wasn’t talking, was constantly on the go and started to get frustrated quite often. We would attempt to have play-dates with kids his own age and he would just cry, hit it them and throw what seemed to be at the time – tantrums.  I was never recommended to seek early intervention by a doctor or anyone else. Once I recognized the tantrums seemed like meltdowns, and nothing I could do was making anything better, I was beginning to feel I was failing as a mother.

He would hit, slap, bite, scream, cry and then I would cry and he would be so exhausted after an hour or two that he would pass out. I knew in my heart it wasn’t normal but everyone else wasn’t experiencing what I was, or dealing with these daily battles. I was SO sure as well as concerned, that he had Autism or some sort of developmental delay. With my background in child psychology and early childhood,  I just had a feeling that he was different.
I had always tried signing with him as a baby but gave up as he got older. Thank goodness I knew a parent at my job that told me about Signing Time.I gave sign language another chance and we started Signing Time on Netflix together. He started using ASL as a communication tool around 20 months and by 2 he could sign all his colors, basic words and some short sentences like “More cereal please.”.  Around his 2 year wellness check the pediatrician FINALLY suggested early intervention therapists come out, and it wasn’t until 2 1/2 that he was seen; and by then he was practicing echolalia and still communicating with sign language. He didn’t fail any motor skill tests, he mimicked imagination and they told me he wouldn’t be receiving any services.

I felt absolutely devastated. My 2 1/2 year old who wasn’t using any spontaneous language, who never pretended to play with cars, trains or dolls would not receive speech or  any other therapy.. I called the pediatric office and was told I got a referral to see a developmental pediatrician, I felt relieved. Then when scheduling his appointment I was told it would be SIX MONTHS to be seen, due to an extremely long waiting list. I kept hearing how early intervention was key to helping these kids with delays, but i began to learn how hard it was to receive any services. During this excruciating waiting time, I practiced words, numbers, spelling, singing and some motor skill games. He still attended developmental gymnastics at my work and daycare. The meltdowns still occurred, especially after a day at school, and then somehow, magically, I learned about Sensory Processing Disorder and Hyperlexia through a parent at my work. Those 4 little words began a new chapter for my motherhood journey as I started to begin to understand my child and what was going on in his brain.
The more I read about SPD, the better I could start predicting when he would have a meltdown or what would cause it. His daycare was NOT  good place for him; too many loud noisy kids with not enough structure. By the time he came home from daycare, he was a hot mess and was comfortable enough to scream and cry and express himself. When he was at the gym or somewhere we were during a play-date, he wasn’t able to focus out all the extra stimulation, nor could he communicate with anyone so he was hitting and biting out of frustration.
When he had his developmental pediatrician evaluation, he was already three years old. He had JUST begun spontaneous language, and the doctor found him to have a developmental delay with sensory process difficulties. The DSM- 5 doesn’t recognize Sensory Processing Disorder as a “real” disorder, but usually part of Autism, ADHD, or something else. With NO label, these kids struggle to get ANY services. How could something that made daily life so hard, not be considered a legitimate disorder. PLUS they wouldn’t diagnosis ADHD with him until 6 years old!
We were going to receive Occupational Therapy, but no speech, and a follow up within six months. A slight “win” right? She also recommended the book “The Out-of-Sync Child“. Which was another eye-opener for me. It distinguished how ADHD, Autism, SPD, and other disorders were similar yet different, and how to handle your child with it.

Now here he is at 4 1/2, thriving and doing extremely well. He comes home from school with endless energy, due to having to focus all day and still needs help expressing it. He has a little trampoline, crash mat, and loft bed with a ladder in his room. We’ve made hop scotch on the floor, and sensory items to play with as well. He has his own little OT at our house when he needs to burn energy after a long day. He no longer freaks out or gets scared when loud toilets flush/hand dryers. He can focus better with lots of people or music around as well. At his follow up appointment they even stated he was no longer catagorized as developmentally delayed. Socially, I still feel he is a little behind his peers, but as his current school he fits right in. If you’ve ever seen Big Bang Theory, Sheldon Cooper is my son in the future.
With me being able to understand how he feels and what’s going on in his head, our bond has completely increased. He has no memory of his meltdowns or what happened when he was younger, and gives me all the love in the world.

Another topic I’ll discuss another time is Hyperlexia/Hypernumeracy. Not only was and is my child struggling with his sensory issues, but he is extremely bright and has a knack for numbers and words.  This made life even more of a challenge, but a blessing in disguise.

I can’t say this enough, but Jaxon’s hyperactivity and sensory difficulties have made me a better patient parent, and i’m so thankful for that.
Don’t forget how important you are to your kids, and how much they love you!

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3 thoughts on “Sensory Processing Disorder – The “not recognized but feels so real” Disorder

  1. Well written! We went through a similar experience with our 2.5yo.

    Finding out about SPD was an awakening for our family. Suddenly, these seemingly random tantrums, had obvious triggers and could be predicted and prevented! I learned more about how my kiddos function and learned about myself (diagnosed ADHD in school but in hindsight clearly also SPD).

    Like

    1. Yes! I feel exactly the same. My first grade teacher wanted me to get diagnosised with ADHD and my mom never took me.. I hated being touched or people too close to me growing up, and loud music or noises. All makes sense now, but I didn’t have it as bad as my son. It’s crazy how much having children can teach you!

      Like

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