Our Journey With Sensory Processing Disorder

Looking back on our journey with two toddlers who have Speech Delays and Sensory Processing Disorder, I find myself feeling extremely lucky to have close family members who work in the therapy field.

Ella was around 18 months old when we started to take seriously that she may be a bit behind on recessive and expressive communication. She babbled her own little language that would make us laugh because it sounded so cute. However, we became increasingly concerned at her lack of words or understanding of what we said to her. For example, at almost two years of age if I asked “Ella, where is daddy?” She wouldn’t look around for him. She wouldn’t really answer to her name at all. She seemed super picky about her food choices. We also started noticing a lot more tantrums over simple transitions.

We spoke to two pediatricians who suggested that we wait a few more months. Then we would have her hearing evaluated and possibly evaluated for other delays. It seemed odd that we would be told to wait it out. If we waited “couldn’t it just get worse?”, we thought. The tantrums at this point were non-stop and She was so frustrated. After doing a bit of research, we reached out to our local Early Intervention services that operates through the school system as well as a private clinic that specializes in Speech, Behavioral, and Occupational therapies.

I want to point out right here that we would NOT have known to do those things without having a family member who works in this line of work. The last pediatrician we spoke to went straight from “Check her hearing” to “Autism Evaluation”. This was my first experience with having to go against a doctors recommendation, do my own research, and become my Childs advocate. Which is what leads me here sharing my story with you. My hope is that in sharing our experiences another family may find answers.

I have learned over the last two years that an Autism Evaluation is a really big push for therapist. It is typically what stands in the way between a child receiving therapy that is covered by insurance. Unfortunately, having Sensory Processing Delays, Sensory Integration Dysfunction, Apraxia of Speech, or other developmental delays aren’t always taken as seriously by insurance providers.

I don’t blame the clinics or therapists who put a little pressure behind having kids evaluated for Autism even when they aren’t 100% sure on the diagnosis. Having an Autism diagnosis opens endless doors into the therapy availability and insurance coverage.

Is this fair or right? Should a family have to decide to possibly label their child with a diagnosis just to get access to tools that could help them function at their highest level?

So we decided to skip the Autism Evaluation for now. We had her enrolled in Early Intervention services, Speech Therapy, and Occupational Therapy and just paid out of pocket. Within weeks we were noticing a difference and within months we had a totally different kid!

After over a year of therapy you would never know that our girl couldn’t talk. What we learned is that her delays began to form behaviors that were parallel to those on an Autism checklist. However, when she was re-evaluated at the end of her Early Intervention program her scores skyrocketed. She went from “Below age level” to “Average” or “Above age level” in developmental standards.

What we learned:

There isn’t a guidebook that comes with your children. Especially for kiddos that don’t follow the standard developmental guidelines. So when it comes to children not yet of school age, there seems to be a HUGE lack in education for parents around sensory delays, how to catch them, and receiving help as early as possible. (There really seems to be a huge lack in education around Sensory Processing Delays in general outside of the therapy fields but I won’t dive into that now.)

I’m not even going to lie to you. This is going to be a bit of a rant but a promise there is golden nuggets of info here.

Now, speech delays are a bit easier to spot on your own but sensory processing delays/dysfunctions can be much harder to spot and navigate. Especially if you don’t even know what that is! I remember in the early days of Speech and Occupational Therapy with Ella all of the therapist would commend us for getting her started so early and mentioned how most parents don’t seek out help until closer to school age or later.

I can’t really take credit for that entirely. My mom gut told me that Ella was struggling with speech but my amazing family members in the therapy fields were the ones to really educate me and push for me to dig a little deeper into Ella’s behavior and seek outside help.

Now if you are like me, the most you might know about “Sensory” therapy is how to make one of those cute “Sensory Bins” that you see all over Pinterest.

Well friends, let me fill you in on a little secret. Those magical bins… they only cover the Tactile Sensory System. There are EIGHT different senses that our brains have to navigate. Sometimes those senses can be functioning too high or too low for our bodies and that is where therapy comes in to help us stabilize and help us find ways to regulate ourselves.

I’m sure your curiosity is wondering what those 8 senses are, so here is a quick review along with a link to a great website with way more info for you to dive into.

Obviously I am not an expert. I am just a mom who has become obsessed with learning as much as I can to be the best advocate I can be for my kids. So I can only speak from my own experiences and research. However, I have a few things I want to say that I feel like is not discussed enough.

Most of us have some type of sensory dysfunction. It may not be at a level that we needed to seek additional therapy, but it effects our personality and our behavior. You may not like music to be too loud. Large crowds may stress you out. You may struggle to focus sitting in a desk all day because you seek more movement. You may not like to eat certain foods because of their texture. The list goes on.

Through out our therapy experience for both of my toddlers, tools have been shared with me by their therapist to help them process things a bit easier. I have consistently found myself saying, “Why haven’t I known about this before? This would be helpful for ANYONE with a toddler. Not just those with sensory processing needs!”.

The crazy thing is that most of these tools shared with me are followed with a label such as “Autism”, “SPD”, or “Early Intervention”. I have yet to see them used or discussed in a neurotypical setting or research. This has blown my mind guys. It has made me so passionate to share with everyone who shows interest how amazing these tools can be for ALL children not just those who may struggle a bit more than others.

I plan to share all of these tools with you here on the blog but to give you an idea, here are just a few examples of ones I love the most; Social Stories, Transitional Timers, Visual Schedules, Applied Behavioral Analysis, How to evaluate your own Childs development, the sensory system and so much more.

It has been a running joke with our many (many) therapists that I somehow missed my calling because I am so passionate about educating myself as much as possible on the styles of therapy and tools that have been shared with us. Hopefully by me sharing my experiences and research here it will find its way into the hands of another family and be helpful when navigating their own journey.

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