I was sitting in a kid-friendly waiting room, while my daughter participated in a social group therapy. Patiently, I sat there amongst the other moms. We took this time to connect. The waiting room had become a support group for me. We were a group of moms who bonded over shared experiences. Week after week, we discussed our kiddos, how to get them help, and sometimes we discussed the latest episode of Empire, Scandal or other popular shows. These moms were a secret treasure.
There was one mom I connected with the most. Her son and my daughter had many similar issues with sensory: biting, head banging, and other behaviors. She really helped by providing some clarity and perspective to my daughter’s sensory issues. One day during a winter session, following my daughter’s first evaluation for autism, I accidentally boasted about my journey to my sensory mom acquaintance. She looked at me with a long face and said: “I wish they would have diagnosed my little one with autism.”
I wondered what she meant. Honestly, I was fighting through an oncoming current of services and early intervention therapies. I just didn’t have time to wrap my head around anything else going on in the world.
As my daughter enters kindergarten, my mind finally has time to think. I began to wonder about that friend I made in the little waiting room. I wondered about other moms going through the same thing as she was going through with a sensory processing disorder without autism. Most of my daughter’s behaviors, which bring unwanted attention, come from sensory processing issues. All of her loud and weird behaviors come from either too much sensory or the need for sensory input. When I am asked about my daughter, I only have to utter one word. Autism. After hearing that word, people just nod and move on.
This word, autism, is so much easier than sensory processing disorder. In addition, so many people have heard of the word, autism, at least once in their life. They can reference the word to Autism Speaks, with their walks and lighting it up blue. Looking at the statistics, there are more little ones impacted by sensory processing disorder, yet not as commonly known. The Star Institute for Sensory Processing Disorder reported on two different studies showing that as many as 1 in every 6 children are affected by sensory processing issues and another study showing as low as 1 in every 20 children fall on the spectrum of sensory processing disorders. In comparison to autism, Autism Speaks states 1 in 68 children falls on the spectrum of autism.
“Star Institute suggest that at least three-quarters of children with autistic spectrum disorders have significant symptoms of sensory processing disorder, and probably more depending on how significant symptoms are defined. However, the reverse is not true. Most children with SPD do not have an autistic spectrum disorder.”
To understand more about sensory processing disorders, I reached out to two moms in two different countries. A Canadian mom shared her years of experience with her older child diagnosed with sensory processing disorder and her youngest child diagnosed with autism. An American mom from Tennessee shared her experiences as she begins the same journey with her child’s sensory processing disorder. These moms have a lot in common. Both mom’s share the same frustration with the world around them not considering sensory processing disorder as a real medical problem. They struggle to get their kids the therapy and services they need to help desensitize them to the world. Both the United States and Canada are falling short in providing these mothers and other parents the services they need to help their kids learn skills to fit into society.
“She would get more of the help she needs if she had been diagnosed with autism.” – Tennessee Mom
The Tennessee mom is starting down the road of therapies to treat her 2-year-old’s sensory processing disorder. Majority of their new therapies are paid for out of pocket. Combine this with the Tennessee mom having to stay at home with her toddler; because no one seems to quite understand her little one. This puts the cherry on top of these financially burdened parents.
“It takes a toll on you as the primary caregiver” – Canadian Mom
This is especially true when you can’t get your family to take the disorder seriously making family vacations, reunions, and birthday parties a real challenge. Furthermore, extending this outside of the family to the community is even more challenging.
“Sensory processing disorder is a whirlwind” – Tennessee Mom
The early years of the Canadian mom’s journey with her son were a whirlwind of emotions as she learned to deal with the rollercoaster of behaviors. It all started with an extreme food sensitivity. Her, then 4-year-old, son struggled so much with food. He spent most of his time hungry. His hunger led to behaviors. Those behaviors led her into the doctor’s office. Her pediatrician never used the words sensory processing disorder or other terms she learned along her journey like orally defensive. It wasn’t until she found an amazing occupational therapist. With the support of the occupational therapist and a lot of research on her own, she began implementing an award program. This was really successful. Over the years, she saw both progression and regression. Together, she and her son persevered through it all.
“Progress will always happen with the right supports and positive thinking.” – Canadian Mom
No matter what diagnosis, the Canadian mom’s words ring true. As an autism mom, I know first hand. I have seen this to be true in the communities I have joined while on my own adventure through autism. Early on in my journey with my daughter, I joined a group called Voices of SPD. It was an eye-opening experience to the world of sensory issues. Even with their struggles, they reach out and help other moms. They help other moms problem solve. They help lend an ear when the stress gets too much and a mom just needs to vent. Most importantly, they help other moms stay positive.
“I just want to say that if you don’t know, ask. Many people have never heard of SPD and I don’t mind to help educate” – Tennessee Mom.
I hope by writing this blog I help spread the word of SPD, Sensory Processing Disorder.
Continue on with the topic of SPD by watching Autistic-Like: Graham’s Story is a story of a family trying to find the right words and the right diagnosis for their son. It is a family’s attempt to bring attention to sensory processing disorder. Let’s help them with their mission.