Sensory Processing
In the past year I’ve posted a few times about what it’s like to have a difficult toddler and to manage problematic behaviors. I’ve often wondered if his behaviors were my fault or if something else was at play but time and time again I’ve been told that “boys will be boys” and that he’s just a “typical toddler” – my concerns dismissed as “normal.” There’s something to be said for mom instinct though and I’ve just felt that something really wasn’t right. I kept reaching out and asking for help to our various medical providers telling them that either I was really screwing something up or something was off with my older son. Finally, after 4 years of asking and wondering, my concerns have finally been validated. One of our providers finally figured out what was going on – my son has a sensory processing problem.
I had heard of sensory processing before but what I didn’t know is that there are two types of sensory processing disorders. Until know, I had only heard of those with sensory avoiding behaviors – kids who have a hard time with textures, physical touch, loud sounds, etc. Little did I know, there are also children who are extra sensory seeking! In the past month I feel like I have been attending a crash course in sensory processing. I have learned so much and yet I still feel like I know so little.
My older son has ALWAYS been VERY touchy feely. As a newborn he was super snuggly and he craved being swaddled. He enjoyed being tightly baby wrapped and I wore him everywhere. As he grew we noticed that he was a super social kid. He introduces himself to everyone he meets and tries to make friends with everyone – literally. We joke around and call him class president in training. He has very little “stranger danger” and has a very difficult time with the concept of personal space. He is also very rough, he has a hard time sitting still, and never stop moving ( or talking) from the moment he wakes until the minute we put him to bed. It’s exhausting. We figured that a lot of his energy was normal and that he just has a super outgoing personality but it turns out there’s more to it.
The straw that broke the proverbial camel’s back and finally led to a diagnosis came when I was stuck in Texas for 7 weeks at my parent’s house due to the COVID virus. One day when he was supposed to be napping, my mom and I went to check on him and caught him licking the wall – at just two months shy of turning 4. To be honest, I always wondered whose kid licks walls and needs to be tested for ingesting lead paint – apparently mine does. I was horrified. I’d maybe expect that from my baby – but not from the one turning 4. Don’t get me wrong, I know kids do all kinds of crazy things – but he literally didn’t seem to understand why I was so upset to see him licking the wall – and that freaked me out even more. How many times had he done this at home and I just hadn’t noticed? Why would he do that?!
When I called one of our providers to question his most recent collection of difficult and odd behaviors, she suddenly stopped me and asked me if I knew anything about sensory processing. When I admitted that I didn’t know much she asked if it would be OK if she ran through a questionnaire with me. I figured it couldn’t hurt to rule something out. The little that I knew about sensory processing was about kids who avoid sensory situations and that did not sound like my kid but I was so desperate to find a solution that I figured one more survey wouldn’t hurt. As she started to go through the screening questions with me though, I got a strange sinking feeling in the pit of my stomach. I heard myself answering yes to a lot of the questions she was asking me – questions that didn’t seem to have anything to do with sensory – or so I thought. To make a long story shorter, the results of the survey test led us to begin looking for a way to get our son formally tested to see if he did in fact have a sensory problem. Unfortunately he was too old to be evaluated by the state birth to 3 program and we were put into a holding pattern waiting to hear from the public school about testing through them. Due to the virus and school closures, all testing was on hold but in the meantime life continued for us and my sons’ behavior continued to spiral out of control.
As luck would have it, I was venting to a friend when she stopped me and admitted that her child was receiving occupational therapy for a sensory processing issue. Not only that but I discovered that TWO other friends did as well and they were all receiving services through the same practice and all raved about their experiences there. The next day I called and luck smiled on me again – the practice was willing to take our insurance and not only that, but one of the owners herself was willing to get my son in for a formal evaluation in just one week – and they were open for therapy despite many offices still being closed. I couldn’t believe my luck. I thanked God because I finally felt like we were going to get some answer that might help us.
The night before the evaluation I felt so torn. Part of me wanted the eval to show that there was nothing wrong with the way that my son perceives his world but another prayed that there was an issue because we would finally have a reason for his behavior and possibly a way to begin changing it.
The day of the evaluation, I brought my son into the therapy office and immediately felt welcomed. The amazing therapist and co-owner of the practice talked to my son directly and treated him like a real person, not just a patient. She was patient and kind and my son took to her immediately. She explained everything to me as she was working with my son and told me it was OK to feel overwhelmed by all of the information that I was trying to wrap my head around. She promised to answer any questions I had and to make sure to put everything in writing for me soon.
It turns out that not only does my son have a sensory processing issue causing him to crave extra sensory input but he also still has several newborn “reflexes” that are supposed to disappear or integrate themselves by 6 months of age. I also found out that children who have sensory issues are often mislabeled as having ADD, ADHD, Autism, and accused of being uncooperative. I was floored. Suddenly some of my son’s behaviors started to make sense. Of course they were still annoying and frustrating but now at least I could begin to understand why they were happening. Additionally, the therapist noticed during her testing process that my son was using one eye more than the other and referred us to a developmental eye doctor.
Being extremely dependent on glasses myself (I am more or less legally blind without them) I had been very particular about getting my son’s eyes checked but he had always passed. Turns out that he was just really good at hiding his deficits!
All of this new information was overwhelming, validating, and guilt inducing all at once. I felt terrible for not being able to connect all of the dots sooner but also angry that it had taken this long to get a diagnosis since I had been asking for help for over two years. I was devastated that my son had been struggling to make sense of our world and I promised myself I’d strive for more patience with him. We arranged for him to start seeing the occupational therapist who evaluated him as soon as possible. Come back and check out my post next week to hear about what his occupational therapy entails and how it’s helped us. Always trust your mommy instinct and don’t be afraid to keep pushing and to fight for your child – after all, you know them best.
