At around age two my daughter was diagnosed with Apraxia, a motor speech disorder. I soon learned that many children with Apraxia also have neurological soft signs and other associated disorders which could include low muscle tone (hypotonia), fine motor delays, and sensory processing issues. Claire had always been very hyper and never seemed to fear anything. She climbed out of her crib at an early age, could dismantle anything, and never liked to sleep! I thought this was just her personality and figured she had taken after her daddy.
Being the dutiful parent, I researched sensory processing disorder and realized Claire had many characteristics of sensory processing issues. Her nervous system could not appropriately process the senses of touch, vision, hearing, smell and taste. Many children react negatively to certain stimuli, but children with sensory processing issues have extreme reactions and can interfere with normal functioning.
You can find out more information about Sensory Processing Disorder by visiting http://www.sinetwork.org/about-sensory-processing-disorder.html.
Claire seemed to have many characteristics of sensory processing disorder, so I scheduled an Occupational Therapy (OT) evaluation at a local hospital. The OT determined that Claire did not have any sensory issues or fine motor delays. In my gut, I knew this therapist was mistaken. Nonetheless, I trusted what the “experts” said, and delayed getting another OT evaluation for several months. In the meantime, Claire was getting therapy 2-3 times/ week for speech, so I felt that was enough therapy for a two year old. She still made little speech progress and her behavior seemed more erratic. Taking her out in public or playing with friends had become almost intolerable.
She was now 27 months old and had maybe 20 word approximations. According to all the milestone charts, she was “supposed” to be putting two words together and forming sentences by now! Our private speech-language pathologist, Janey Tolliver, kept insisting that I get another OT evaluation. So I scheduled an appointment with and OT who specialized in pediatric sensory issues at Marino Therapy Center in Knoxville.
I observed Claire’s evaluation and was fascinated to watch the tests they performed. She did an inventory of Claire’s milestones and tested her reflexes. The therapist determined that Claire DID have moderate sensory processing issues and fine motor delays and would need OT for at least a few months. She also informed me that some of her infant primitive reflexes had not disappeared when they where supposed to. The presence of these reflexes was affecting Claire’s fine and gross motor skills. Children with sensory processing issues can be either a sensory-seeker or sensory-avoider. Claire was a sensory-seeker! A sensory-seeker is hyperactive, always on the move, and disorganized. Finally, I had an answer to why my little blonde-haired, blue-eyed girl was so rambunctious! The Occupational Therapist gave me tons of information on sensory processing disorder and put Claire on a sensory diet. Her diet would include pushing heavy items around in a cart, jumping on a trampoline, and carrying heavy items on her back among other activities.
Once we started OT, I began to understand how Occupational Therapy could help my daughter. She needed more sensory input to organize herself. She seemed calmer and was able to more concentrate more easily. The biggest surprise to me was her language explosion. Her vocabulary took off! I learned that her brain was not able to focus on learning language until her body was was getting its physical needs met. She continued Occupational Therapy for over four months until she met most of her goals. Our insurance partially paid for a few sessions, but were later denied because sensory processing disorder is not a recognized diagnosis. The insurance company claimed that most of these exercises could be done at home.
The lesson I keep learning throughout this entire process is to trust my mommy instincts. Something wasn’t quite right and I kept pushing until I found the answers I needed.
Sarah Patton is a former high school guidance counselor and is now a stay-at-home mother of two young daughters. Her daughter, Claire, has Apraxia, a motor speech sound disorder. Sarah has extensive experience with advocating for her daughter’s need for speech services.