Down syndrome Suckle

Hello again! I've posted a letter I received in email from a mother curious about her son's suckle and tongue protrusion. My answer is below.

Dear Sara,

My name is Erin and I have a child, Flynn, that was born on 11/8/09 with Down syndrome. I just read your article that a friend gave me about the oral-motor myths of Down syndrome and just wanted to share and inquire about the differences I have found with relation to his tongue protrusion. Flynn was born with an imperforate anus witch at times has obviously affected his eating habits especially after each surgery, of which, he has had four. However aside from that he has ALWAYS, since the first moments he was born, had a great suckle. I nursed him for the first seven months and am now bottle feeding. We have had other issues like frequent spit ups and transitioning from the breast to the bottle but he has always had a strong suckle in my opinion and i do have three other kids to compare him with. The question I have for you is that your theory on myth #2 assumes these babies have a weak suckle which causes in turn their tongue protrusion. Since Flynn does not have a weak suckle can you think of another reason why his tongue is always out of his mouth??? Just to give you a little bit more background on Flynn, he has not had an ear infection to date. He does seem to have a chronic upper respiratory infection since birth landing him in the hospital for 10 days with RSV which turned into pnemonia. And, his tongue although almost always protruding out of his mouth unless he's laughing does not seem, again, in my opinion, any larger than normal. My friend that I previously mentioned also gave me a chewy tube. I wanted your opinion after hearing Flynn's story weather this is the right treatment for him and again any other theories to his tongue protrusion.
I'm not sure how to blog, I couldn't figure it out so that's why I'm e-mailing but feel free to ad this to your blog as I'm sure other mothers may have the same questions and concerns. Thank you in advance for your insight and I look forward to hearing any response, ideas or suggestions you may have.
Erin


Dear Erin,

Thank you for you email and your interest in my work. You describe your son's suckle as strong but I wonder if it is strong in the correct direction. Children with Down syndrome frequently develop strong tongue skills but they have more protrusion than retraction and that is what I think you are seeing. Your son is 9 months olds so he is ready to transition onto a Honey Bear. This therapy tool will teach his tongue to retract during the suck. A suck (retraction only) is used to draw liquid from a straw while a suckle (retraction and protrusion) is use to draw liquid from the breast, a bottle or a sippy cup. Lori Overland has made a DVD which I feel should be viewed by all parents of babies with this diagnosis. It is called, Developing Oral-Motor and Feeding Skills in the Down Syndrome Population. In it she talks about when and how to introduce specific textures and how to encourage maximum oral skill development for improved speech clarity.

In addition, if possible I would encourage you to make an appointment to meet with a speech-language pathologist who looks at oral-motor skills in addition to language development as both are needed to ensure that Flynn achieves his maximum potential in feeding skills and in oral communication. I hope this helps. Sara