This is the fourth in a series of articles about our Texas Hill Country Fourth of July. What’s the tie in? Well, it occurred to me as we were watching our own personal fireworks show on the 4th, as the bombs burst in air, Noah (age 6 with Down syndrome) was entranced by the light show, and after the first “BOOM” (that would be the Tannerite), he was fully acclimated to the loud noises that would typically send most children with Down syndrome over the edge. It reminded me of how I’ve had several opportunities lately where I’ve noticed Noah demonstrating quite normal sensory processing, not at all what the available literature has prepared us for.
One thing autism spectrum disorders and Down syndrome have in common is both seem to present with a plethora of sensory processing/integration issues.
Background information on sensory processing and sensory integration disorder from www.spffoundation.net follows:
“‘Sensory processing (sometimes called “sensory integration” or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or “sensory integration.”
‘Sensory Processing Disorder (SPD, formerly known as “sensory integration dysfunction”) is a condition that exists when sensory signals don’t get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.’”
Sensory integration (a.k.a. sensory processing) issues, especially as it relates to the senses, can cause a child to melt down or tantrum over things most people don’t even notice such as itchy tags in clothing, the hum of flourescent lighting, the normal noisy din of a restaurant, temperature being too hot or too cold, unfamiliar food or tactile textures, unfamiliar scents, and the list goes on and on.
From infancy, Noah (6 with Down syndrome) exhibited little to no sensory issues, and we heeded the advice given to us by other parents of children with Down syndrome, “Treat him just like you treat your other kids, have the same expectations and only modify if he proves it necessary.” Well, my husband (God love him) and I are VERY stubborn, so let’s just say we don’t modify a whole lot. What treating Noah just like we treated our other kids looked like was when he fussed while we were in a restaurant, we distracted him; when he spit out the new baby food we fed him, we mixed it with food he did like; when he balked at getting his hands dirty in play, we used hand-over-hand assistance to complete the activity quickly and repeated the activity a few days later with lots of verbal encouragement.
Some experts would read this and quickly identify sensory integration issues or and see our response to it as appropriate treatment. But as I list the behaviors in question, I have to admit most of my children, as babies, exhibited those behaviors or others that would fall into the sensory processing difficulty category. Think about each of your children. Can you relate?
When a child is given a diagnosis such as autism or Down syndrome, it is so natural for parents to identify challenging behavior as part of the diagnosis and set about the work to accommodate it. In some instances that may be the best option, but in many other instances, if we can recognize the sensory issue involved, we can set about the work to desensitize and integrate the sensory issue into healthier functioning. Note I said healthier. It is probably not realistic to expect every child with sensory integration issues to reach a state of completely typical functioning, but it is realistic and absolutely healthy to set goals of better sensory integration throughout their lives.
For parents and therapists who place a high emphasis on accommodating sensory challenges without attempting desensitization, please remember that most of these children will grow up to claim a place in society, and whatever sensory integration dysfunction they carry with them into adulthood will limit their opportunities. Imagine a 20-year-old who cannot walk into a grocery store because of the noise and variety of odors in a typical grocery store, an 18-year-old who cannot work out in a gym because he cannot tolerate the music that plays over the stereo system, a 30-year-old with tremendous computer literacy who cannot work in an office because of his intolerance of flourescent lighting, a 25-year-old who struggles with obesity because her food aversions limit her to macaroni and cheese and chicken nuggets. You may have to move very, very slowly, but you CAN help to move your child along to better sensory processing and integration. If you suspect your child has sensory issues, contact a reputable occupational therapist for an evaluation. If your child is already working with an occupational therapist, make sure to discuss with them desensitization, sensory integration and setting appropriate goals that may bring your child forward on the sensory processing disorder spectrum.
So back to the original question, “Do all children with Down syndrome have sensory processing issues?” I’m going out on the fence here and disagreeing with the totality of the information available and my answer is no, not all of them do. Rather than argue the point of whether or not Noah ever had sensory integration/processing issues to begin with, I can happily say if he ever had any, they have been fully resolved. Being aware of the high incidence of sensory processing disorder in kids with Down syndrome, since his diagnosis I have included sensory play in Noah’s regular activities so he has a chance to have new sensory experiences in a controlled and limited environment. These sensory experiences are not hard to create – think Play-Doh, rice bins, fingerpaint, music and dance, ice play, shaving cream painting and introducing new tastes and textures to Noah’s food. www.Pinterest.com is a great source for ideas as is the Interent in general. Some search terms to help: Occupational therapy, sensory bins, sensory play, sensory processing, tactile stimulation.
Here are some websites to get you started:
http://therapystreetforkids.com/ - A wonderful website with lots of ideas for occupational therapy activities to do at home, organized by specific skills targeted.
http://www.loveplayandlearn.com/2013/02/sensory-bin-guid.html - Everything you ever wanted to know about sensory bins, including a long list of DIY sensory bin ideas.
http://pinterest.com/mamajoyx9/occupational-therapy-sensory-fine-motor-at-home/ - This is my Pinterest board for all things occupational therapy, including a lot of sensory processing ideas.
As much as we parents of children with special needs tackle on a day to day basis, be encouraged that the work your child is doing today and the obstacles that your child is overcoming today are shaping his future – and yours!
Your turn – how are you progressing through sensory challenges with your child? If your child has Down syndrome, what has your experience been with sensory integration issues and their ability to work through them?
Apraxia moms – There is a lot that rings true about a connection between sensory integration dysfunction and apraxia. Where are your kids on the sensory processing disorder spectrum?