Thursday, August 13, 2009

Oral Motor Therapy

My Mom and I attended oral motor therapy workshops at the NDSC convention a couple of weeks ago presented by Sara Rosenfeld-Johnson, a speech therapist/feeding specialist of 35+ years from Arizona. I can honestly say that they were the most interesting and beneficial workshops I have ever attended. Her therapy focuses on strengthening the jaw, lips and tongue. Sarah's approach utilizes straws, horns and whistles, among other things, to build muscle strength around the mouth and jaw which will, over time, improve a child's feeding mechanics (e.g., chewing and swallowing) and speech clarity.

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.

10 comments:

Ria said...

Very informative post! Thanks for sharing. It's interesting that our OT/ Feeding Specialist is not bent out of shape that we use the sippy cup, although Matthew can drink out of a thin straw without help too. Her thought is that it won't delay his speech that much more...but she never says anything about whether this will affect how clearly he speaks. Our speech therapist has not said anything along those lines either.

Reading this post has armed me with more questions for our therapists. Thanks!

Hector and Jennifer Varanini Sanchez said...

I am so with you on this post! I totally think Sara ROCKS in the oral motor department and I think she is one of the leaders in the future of speech development for our kids. I have had the pleasure of seeing a talk of hers done by one of her partners right when Joaquin was diagnosed. I loved her talk at the convention too. I bought her entire parent kit and will be doing all the exercises at home too. We should keep in close contact and see how things are going. I may need to meet up with her individually too. She's amazing!!! BTW, our speech therapist says the same things about food and drink....whatever Joaquin uses to get food into him is the best....I didn't listen to her....we will not ever use sippy cups and we will be working hard on our own in this department :)

The Paskins Family said...

Oh Sharon - I feel your pain. I know Nate is a bit younger than Brennan, but I am really struggling with this too. We don't have any talk tools therapists in Oregon either and I am now so skeptical of anyone else's advice.

Let's encourage each other to keep seeking the best care for our kids. You've been doing the best with what you know - now you can do even better with new knowledge.

I just received the full talk tools kit and am hoping to start watching the 3 hr parent video tomorrow.

Hang in there friend!
Danielle

Shauna Yule Brasseur said...

Oh, Sharon. You are not failing. You are amazing and the best possible mom and advocate that Brennan could ever have. I am so proud of you and so happy that you and Mom met Sara at the conference.

*You* made that happen and are doing everything that you can for your sweet boy.

I love you,
Shauna

AngieW said...

Wonderful post. We don't have a feeding specialist and our OT has only worked with us on transitioning to a sippy cup a little bit. I was the one who suggested using one with a straw, from other things that I read.

Ben also makes lots of sounds when he babbles, and often his tounge is in the wrong position, but he is still making the sound so they are happy. We were also told that he was too young for speech.
I now have a whole list of questions for our next session tomorrow.
Thanks!

Monica Crumley said...

Great post. You're not failing Brennan! Just be glad that you got better information which will work to his benefit. Libby Kumin really talked a lot about speach intelligibility at the preconference as being most important because if others can't understand our kids when they're adults, that's the biggest issue. I guess it shows that we can't just assume our therapists know the best things for our children. After all, they specialize in all kinds of special needs, not specifically Down syndrome... at least in our case. Thanks for sharing... I may have to trash the sippy cups even though I hate cleaning up spilled milk on a daily basis from him throwing his milk cups!

Catherine Just said...

oh my god. I am SO glad you went to see Sara! How incouraging that you are on a road to progress. It's never too late. I remember her saying that a few times at the conference.
I went to see a speech therapist this week and she has a year long waiting list for therapy. So I am going to use that link to see if there is anyone else who sees the potential and uses Sara's techniques in the meantime. Thanks for posting this. It's so important.

heather said...

We primarily used sippy cups with Morgan even though I knew it was better to drink out of a straw cup. Her speech is quite clear and I frequently get comments on how well she speaks. I think it does help for tongue strength but I think the first year of nursing did a lot of that for her too. It took Morgan awhile to start to chew food (a lot longer than my other kids). I remember wondering if she would ever be able to bite into a chicken nugget and eat it or if she would always just suck on food. But I am happy to report that she is a GREAT eater and chews all of her food. I am not sure when this happened but I am guessing she was closer to 2 1/2 years old. She never had problems with aspiration/pneumonia or choking but it just took her longer (like many things for her) to figure out the biting and chewing aspect of eating. It WILL come though!! You are doing a great job on making sure Brennan is getting all the correct techniques from an early age. It will definitely help down the road.

Elizabeth J. Neal said...

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. oral motor toys for therapy

Akmos17 said...

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