Brennan has been seeing a speech therapist who specializes in feeding since he was about 10 months old. He progressed from infant cereal to baby food to table food and by the time he was 13 months old, we stopped working on feeding and started focusing more on speech and then on getting Brennan to drink from a sippy cup. Sara is strongly opposed to the use of sippy cups, as it encourages tongue protrusion. She supports the use of straws instead which encourage tongue retraction. To illustrate her point (and the proper positioning of the toungue when speaking), she asked us to put our mouths in the position used to draw liquid from a sippy cup, then to put it in the position used to draw liquid from a straw. Then she asked us to count from 1 to 20, noting the position of our toungue in our mouths. Saying almost every number required the tongue to be toward the back of the mouth as it is when you drink from a straw. None of the numbers (or really any speech for that matter) require the tongue to be over the front bottom teeth as it is when you drink from a sippy cup. These simple exercises, along with many other statistics and examples from the conference and personal experience with Brennan was more than enough to convince me that we need to get rid of our sippy cups and move to straws.
Continuing her theme about the effect of low muscle tone on mouth muscles, she observed that it is fairly common for kids with Down syndrome not to chew their food (or chew it incorrectly or ineffectively). I considered this for a moment but felt somewhat encouraged that since Brennan had been eating solid foods so well for the last several months, that he must have good jaw strength and be chewing his food well. I was wrong.
On the last day of the convention, we saw Sara in the exhibit hall and my Mom asked if she would watch Brennan eat and let us know if he was actually chewing. My Mom gave Brennan a bite of a banana, his mouth moved and then it was gone. I was watching proudly and then noticed Sara shaking her head back and forth as she said "No, he's not chewing. He's moving the food back and forth with his tongue and then swallowing it." She said he may be chewing solid foods, but was definitely not chewing the banana. We didn't have any solid/crunchy foods with us, but as soon as we got back to the hotel I gave him a piece of a veggie stick. Sure enough, he moved it with his tongue from one side of his mouth to the other, then swallowed it without ever chewing. Unfortunately, very few therapists work on strengthening this area of the body. Now I knew we had to start working on oral motor therapy.
When I got home, I looked on Sara's Talk Tools website under the "find therapist" link and saw that there were no therapists in Massachusetts. Then I looked at the "travel clinics" link and saw that Sara was going to be doing evaluations for two days in Rhode Island the following week. I called immediately and set up a time to meet with her. In the meantime, I took Brennan to his weekly appointment with his speech therapist/feeding specialist. I took various foods with me so she could watch him eat and voiced my concern about him not chewing. She agreed that he is not, in fact, chewing his food and said "but, he's eating, getting his food down safely, and getting the nutrition he needs." I was shocked. How could a feeding specialist not view chewing as important? I also asked about the sippy cup versus the straw (since she had been working on helping me transition Brennan to a sippy cup). She said either would be fine. I walked out of the appointment feeling discouraged and immediately called Brennan's EI coordinator to request a new therapist.A few days later, we drove to Rhode Island to meet with Sara. As I was telling her about the experience with Brennan's current speech therapist/feeding specialist, she didn't seem surprised. Brennan babbles quite a bit which Sara noticed immediately and asked what his current speech therapist says about his babble. I said that she is always really impressed and encouraged by his many consonants, vowels and combinations. Sara said "but did she ever voice concern over the fact that he makes these sounds abnormally - with his tongue between his lips?" Uh, no. Then she said "It's all about expectations. It sounds like his therapist expects that he will have unclear speech and expects that he may not eat properly." In that moment, I realized that she was right. If a typical child had gone into the therapist and wasn't chewing, or was pronouncing all consonants with his tongue out of his mouth, I think she would have been concerned. But, since my child has Down syndrome she expects less of him. As we progressed through the evaluation, I was able to see how very weak Brennan's jaw is and how much work it was for him to actually chew.
On the way home, I felt so deflated. I felt like I had been failing my son. Taking him weekly to a therapist who does not see his full potential and who does not have high expectations for him. Following her advice and doing what she has suggested has quite possibly done more harm than good. However, I believe we are now on the right path. We have much work to do, but I feel strongly that this is the approach we need to be taking to teach Brennan to eat safely and correctly and to give him the best chance at clear speech.