Sensory Processing Disorder is closely aligned with autism in that most autistic children have significant struggles with SPD. The following was written by Jennifer Shaw whose son was diagnosed with SPD. Jennifer is a speaker, singer, songwriter, and author of the book Life Not Typical: How Special Needs Parenting Changed My Faith and My Song, an Autism Speaks resource. Visit her online at www.jennifershaw.com
I was the mother of two beautiful girls and was thrilled to add our son, Toby, to the family. The first indication that something was out of the ordinary was when we could not get him to eat any food. We also noticed that he never babbled and he rarely smiled. Over time it was clear that Toby was very speech-delayed and his behavior was getting more and more extreme. He wouldn’t touch anything or play. He was terrified of being messy or being anywhere near things like grass or sand. A drop of water on his clothing would make him scream. It became really frightening and we did not know how to help him.
When Toby turned two, he was diagnosed with Sensory Processing Disorder. Toby’s brain was not interpreting sensory input correctly. People with this disorder can suffer in a variety of ways, but in Toby’s case, he was extremely hyper-sensitive to touch of any kind. His brain told him that food in his mouth, clothes on his skin, and crumbs on his hands were all “hurting” him. He was completely terrified of his world and shutting down.
Toby began occupational therapy, speech therapy, physical therapy, and food therapy. Within two months my son who had no sounds said, “I love you, mom,” and within a year, Toby’s progress was nothing short of miraculous. He is now eight, and has been discharged from all his therapies for three years. It is absolutely amazing to see the change in him and such a blessing to see him able to enjoy his world.
I am a speaker and musician, not a doctor or therapist, but we learned a lot of things along the way that I share with people who suspect this condition in their own children.
Do not ignore the signs. Some of the symptoms of SPD are speech delay, poor coordination, poor balance, avoiding touch or seeking touch in extreme ways, extremely picky or extremely messy eating, irritability or a “difficult” personality. SPD is often misdiagnosed, especially in older children or less severe cases, as ADD or emotional problems.
Do not wait. Early intervention is critical, and treatment is much more effective before the age of three. If you suspect something, get tested by an occupational therapist.
Get help. There is a federal program for ages 0-3 developmentally-different children available in every state. They will do testing and help get your child into therapy programs, many of which are free if you qualify. If your child is over the age of three, help is available through your local school district’s special needs department. Take advantage of any therapy coverage on your insurance plan.
Get educated. Learn everything you can. Talk to your therapists about what you can do at home, watch the therapy whenever possibly, and ask a lot of questions.
Get support. Dealing with special needs can be very lonely and frightening. We found support from our church, our therapists, and the other parents we met at the special needs school.
Don’t give up. SPD can be overwhelming and confusing. It can be hard to navigate the therapy system. Take comfort in knowing that there is help and things can improve. You are your child’s best advocate, and your child needs you.