Fun with Christopher

We have been concerned about Christopher's poor control of his lips and tongue. We know it is all about the poor muscle tone that goes along with Down syndrome. We have been working on improving his posture by playing with toys that have him reach above his head. This strengthens and lengthens his back muscles. We also run our fingers down his spine, to tickle him, as a reminder to sit straighter, when he is slouching. I am delighted to say his posture is much better. He is standing so straight and tall....most of the time, now. The posture has a lot to do with the ability to keep the mouth closed.

We also remind him to close his lips by making kissy noises at him and showing him with our fingers how our lips are closed. But he was still having a lot of the tongue protrusion and drooling. This made me sad. I do not want others to avoid him due to this unsightly flaw. So, I decided to do some studying.

I came across an article that talked about how children/toddlers with Down syndrome should not use a spouted sippy cup. This was a shocker for me, as the OT we had through Early Intervention and the feeding specialist though the Cleft Palate Clinic both insisted he use a spouted sippy cup. With the combination of his low muscle tone and the cleft palate, we had to search to find a sippy cup that would work for Christopher. It was not cheap! but it worked, and he was able to get his nutrition and hydration. Little did I realize it was causing him problems in the long run! With a spouted sippy cup the tendency is to have the tongue out beneath the spout.

We are now working on replacing the sippy cup with a cup that has a soft rubber straw, which we cut to make less space for him to wrap his tongue around. We bought this from Kmart, in the housewares department. If we were unable to find a suitable cup locally, we would have looked into ordering a "honey bear" cup. I have discovered that many times a simple, inexpensive product that is easy to find in department stores, works as well as the expensive professional products.

I am excited to report that after one session with the new straw cup Christopher is demonstrating much better tongue control and lip closure! We plan to work on it at meal times, after he has eaten his food, until he is using it, instead of the sippycup for all liquids.
The other things we have been using is a kazoo, and whistle. These take lots of pucker power and are lots of fun. My husband plans to pick up some Thomas the Tank train whistles in one of the shops, at the company where he works. These come in a couple different styles, and vary in ease of use (and price). My days will be filled with lots of noise, but it will have a purpose.

Christopher's Sunday school teacher shared with me today how Christopher loves music time. This comes as no surprise, as he dances and sings and does hand motions at home. Today, they were deciding what to do next in his SS class, music time or snack. Christopher immediately began placing the little chairs in the straight line they always set up for music time. I guess he made it clear what he preferred to do next.