Dealing with Sensory Processing Disorder
"Mommy, I've got to be in this magazine so I can help other kids with sensitive skin," said Ayden Smith to her mother last year when she saw a copy of Piedmont Parent's first annual Exceptional Child magazine.
Ayden, 8, has Sensory Processing Disorder (SPD). Since she was a toddler, she has dealt with the day-to-day challenges of having what she refers to as "sensitive skin." Ayden wants to wear the same outfit every day; she has trouble showering and brushing her teeth because she can feel pain from the water on her skin or can't tolerate how the toothbrush feels on her teeth. She can have difficulty concentrating in school and needs a break from too much activity every couple of hours. At the same time, Ayden loves to play outdoors and can spend hours digging in the dirt and enjoying the sounds and textures of nature. She loves music and has a strong, outgoing personality. If asked by other kids about her disorder or why she wants to wear the same clothes every day, Ayden's response is, "I'm different, so?"
SPD is a neurological disorder in which children have difficulties with taking in, processing and responding to sensory information about the environment and from within their own body. Many kids who suffer from the disorder may find that the activities of everyday life, such as school and even self-care such as bathing or dressing, are extremely difficult, and for some with extreme sensitivity, sensory input may result in avoidance of activities, anxiety, fear and distress.
Ayden's mom, Blair Smith of Stoneville, says that she has come a long way in dealing with her disorder and can much better communicate how things bother her and is learning ways she can help herself. "The idea of sharing her story with readers of Exceptional Child was all Ayden's own idea," Smith says. "This just shows how her confidence has grown and how far she has come in dealing with this disorder."
Smith says that even as a baby, Ayden was an intense child — she was harder to feed and soothe and cried often especially in comparison to her twin sister, Dylan. Smith says she noticed other signs that her daughter reacted differently to everyday life. When the twins were around 3 years old, Smith took them swimming and noticed that Ayden would be out of the pool, licking the concrete. She also had prolonged temper tantrums, but once Ayden refused to wear any other clothing except a black dance leotard for two-and-half years straight, Smith knew something wasn't right. Her sister, who is a kindergarten teacher, suggested that Smith have Ayden tested for SPD.
Ayden received a diagnosis of dysgraphia, a deficiency in the ability to write, that often goes hand-in-hand with SPD. "Because SPD is not recognized as a disorder, we were originally denied services," Smith explains. "Once we had the dysgraphia diagnosis, we were able to get services covered through insurance." Smith says Ayden spent a year in occupational therapy at Cone Health Outpatient Rehab Center and continues with behavior therapy through Cone Health Developmental and Psychological Center in Greensboro, both of which have been monumental in coping with her disorder. She has also worked closely with Ayden's teachers to help her get a 504 Federal Education Plan so that she can have certain accommodations such as taking tests in a separate room or using headphones or a computer — small changes that have been key to her educational success.
Smith also says she attends a support group for families with children with SPD through the Family Support Network of Central Carolina. "Finding this support group made a huge difference for me in talking with other families experiencing similar things and realizing I am not alone," she says.
"When dealing with a child with SPD and having to go through the day-to-day fluctuations, it's really easy to get tired and frustrated," she says. "My best advice to other parents who have a child with SPD is to take a breath, refocus and educate yourself to learn what your child is going through so you can help them instead of getting frustrated."
Some children with SPD are either over-sensitive or under-sensitive, but for Ayden, who has a type of SPD called Sensory Modulation Disorder, she cannot regulate her responses and can go from being under-sensitive to over-sensitive
Examples of hypersensitivity include feeling pain from clothing rubbing against skin, an inability to tolerate normal lighting in a room, a dislike of being touched (especially light touch) and discomfort when one looks directly into the eyes of another person.
Blair Smith lives in Stoneville with her twin daughters, Ayden and Dylan, age 8.