MOSAIC MOMENTS

When Tim was diagnosed with mosaic Down syndrome at 2 1/2 yrs old, the reason we came to this diagnosis was because he had a speech delay. At 2 1/2, he had 25 single words that only I could understand and was not putting words together to form sentences at all. I was very distressed by his lack of communication and was often frustrated thinking that he would never talk.

In the past few years as president of International Mosaic Down Syndrome Association, I have learned a great deal about mosaic Down syndrome and the speech delays that often accompany it. I have learned that a large percent of children with MDS have Apraxia. This was not Tim’s problem, but I have learned over these years that children with MDS often are more delayed in speech than those with Ds.

We were very fortunate to have a fantastic team of therapists and I learned a wealth of information from them. I never “did” speech therapy. Speech therapy was something that was integrated into our daily lives. Throughout the day I would talk with Tim about the things we were doing and encourage him to say and/or sign a word or two that pertained to our tasks. With the help of my speech therapists, I took a class called “It takes Two to talk” from the Hanen Centre. This program is very similar to Communicating Partners with Dr. James MacDonald.

Within 9 months of using the advise of the Hanen Centre, Tim’s vocabulary increased from his mere 25 words that only I could understand, to an unlimited vocabulary that most could understand and was putting 3-4 words together to make a sentence. I no longer worried about his ability to talk and by 3rd grade, he no longer needed speech therapy.

Today, Tim turns 22 yrs old. He has no trouble speaking or communicating at all and it is those early years of dedication to teaching him to speak that I have to thank.

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