When my middle son, Gus, was two and a half, our sensory struggles started. He would have multiple meltdowns a day; more than the average “terrible twos” temper tantrums. His meltdowns would leave both Gus and myself in tears most days. He also was struggling with a speech delay. I frequently joked with people that I didn’t quite speak his language, but it was more than just a barrier between our words. It felt like I did not understand my child at all, and that was a crushing weight to carry.
Enter our wonderful occupational and speech therapists, wonderful professionals who worked with us. They paired with our primary physician and we added a diagnosis of Sensory Processing Disorder (SPD) to our home.
SPD is defined as a condition where the brain has trouble receiving and responding to information that comes from the senses. Mostly, this means that all the noise, lights, temperatures, internal body feelings (like hunger or needing to go the bathroom), tastes, smells, etc, enter the brain and get jumbled like a traffic jam. A person with SPD lacks the ability to filter out information that is not necessary so they can focus on what is necessary. Because of this lack of ability to filter out the extra, people with SPD live in a constant state of fight or flight. Can you imagine how exhausting it must feel to constantly be “on alert” 24/7?
As a parent of a child with special needs, I tend to dive into research, and SPD became my first topic to explore. I watched countless therapy appointments. I read all the blogs and took all the advice from our OT. Gus really struggles the most with being in large stores such as Target or Sam’s Club. The hum from the fluorescent lights, the bright lights themselves, the noises coming from every direction, the smells of new people or food, the activity, the way the cart feels when he sits in it–they all combine and cause his body to go on such high alert that frequently we leave the stores in tears.
OT helped immensely in teaching Gus how to process information, and by teaching me how to provide him with safe ways to get more sensory input that is calming to him. It helped us learn to keep a supply of sensory equipment in our cars to use when we are out (including noise canceling headphones, a hat or hooded sweatshirt to block out light, an extra sweatshirt or jacket to sit on in carts, and a heavy backpack to help with heavy work and calming). We also are able to anticipate places that will be hard for him, and then weigh the benefits of taking him there.
Over the past 3 years, Gus has participated in OT off and on. He has learned to ask for deep pressure when his body feels unbalanced. We have learned to anticipate times when he will require a little extra attention and support. We all have also learned to recognize when he is losing control, and can intervene earlier to avoid meltdowns. Our home is filled with sensory-friendly items that we’ve collected over the years. Gus is starting to recognize when he needs to use them.
Sensory Processing Disorder seemed overwhelming at the time of diagnosis. There is so much information, and trying to weed through what is helpful for your individual child and what is not can feel like a full time job (and honestly, it sometimes is). All the therapy appointments and scheduling can be a nightmare but I’m here to tell you that, on the other side, all the work you do to support your kids will be worth it. When you can calm the crazy you will see the most amazing children show through. But most of all, you are not alone. You will find a way to connect and understand your unique child and then be able to help them understand the world around them.