Literacy and Down Syndrome

Dear Parents, Colleagues, Clients, and Friends,

Since my studies in graduate school, I have always been especially passionate about serving children with Down Syndrome. The individuals with Down Syndrome that I have worked with over the years have all uniquely touched me and continue to drive my desire to better service this population. I find it particularly interesting that, compared to some populations of children with special needs, the community of people with Down Syndrome have a comparatively broader support system in local as well as national organizations, yet there remains a significant lack of research on how to best help children with Down Syndrome through therapy. Clearly, it is challenging to complete a solid meta-analysis of best practices due to the wide range of presentations of Downs, but for goodness sakes, there does not even seem to be much effort. There is some research, for example, on the efficacy of NS-OME (non-speech oral motor exercises) in typically developing children, but there are still no large-scale studies that I am aware of that study these exercises in children with Down Syndrome– a population who may theoretically benefit from these exercises due to the severity of hypotonia. As a speech therapist, I cannot even provide a decent developmental language norm-referenced guide to families with children with Downs. The gap between the variety of Down Syndrome-related organizations and the actual quality research for evidence-based practice is frustrating to say the least. This disparity, however, does drive me to problem solve and address the unique challenges to servicing this population. The experience has so far been a blessing, and I am excited to take on a new personal challenge: teaching literacy to children with Down Syndrome. 
From my independent research when I was working at a reading clinic in Highland Park, I learned that children with Down Syndrome frequently show a remarkable ability to learn literacy. In fact, I remember being surprised to read that many children with Down Syndrome best learn new vocabulary through reading, and that some speech therapists use sight word recognition as a means to teach basic vocabulary words. I found it fascinating that many children with Down Syndrome learn to read before they functionally talk. I am embarrassed to say that while I was amazed, I filed that information away and I moved on. Only now am I returning to research the exciting field of teaching literacy to children with Down Syndrome. Blair, Julie, and I are excited to be researching and taking continuing education on this fun and exciting area of our field. We are picking the brains of parents that we trust and respect who have children with Downs. We are brainstorming creative ways to utilize the skills of case-study clients in our instruction. We are not there yet. All three of us have learned in our careers the acute importance of getting it right the first time.

So please, if you have any support, access to research, or personal stories about teaching literacy to your child with Down Syndrome, tell us. We not only would appreciate your input, we need it! And in the meantime, if you are looking for quality literacy instruction for your child, one parent who I particularly respect had recommended GiGi’s Playhouse in Lincoln Park. Thank you for your time, support, and continued patronage. We couldn’t do it without you!

Kathleen Holman, M.A., CCC-SLP, Holman Therapy, Inc. www.holmantherapy.com