Matthew and I went to the zoo last month. We were looking at the elephant when I heard a young boy ask his mother, "Why does he keep his mouth open?" I looked over and he was looking at Matthew. It was an innocent question. Matthew's mouth was open. The boy was probably around 8 years old. I didn't hear his mother answer his question and saw her trying to redirect his attention to the elephant. I just smiled at them but didn't say anything else.
I've heard stories of encounters where strangers would actually rudely tell a toddler (or even a baby) to keep his/ her tongue in, as if the child was doing it on purpose. Our encounter wasn't like that. Otherwise, my blood would've been boiling and I would have definitely said something.
Looking back, maybe I should have casually said, "Oh, he doesn't keep his mouth open all the time" or "He's just so amazed by the elephant." It might have been better than saying nothing. But at that time I didn't think there was anything I could say that wouldn't lead into explaining low muscle tone, jaw stability, large tonsils and Down syndrome to strangers at the zoo.
It has been commonly thought that tongue protrusion was due to an enlarged tongue. There are many articles online that still cite that. An online article titled "Tongue Protrusion" by Karen Henderson, who is a Senior Speech & Language Therapist at Cheeverston House, Tempelogue, Dublin, has an extensive list of factors that may contribute to tongue protrusion. It also acknowledges that every individual with Down syndrome is affected by a different combination of these factors. No one is the same. She also suggests several simple activities to increase tone and awareness around the mouth.
Encouraging Tongue Retraction
Several people, including Matthew's Early Intervention therapists, have observed and commented that Matthew is able to keep his tongue in and mouth closed most of the time. Yet in my mind, having his mouth open for perhaps 30% to 40% of the time each day is still an indicator that he needs to increase his overall tone, jaw stability and awareness.
I personally do not believe that Matthew has enlarged tongue. I think his large tonsils are also a contributing factor to his tongue protrusion. I don't know this for a fact but this is what I speculate.
I did (and do) many things to encourage tongue retraction including:
- breastfeeding when Matthew was a baby as much as I could. I nursed him (but not exclusively) for about 8 or 9 months until my body decided it couldn't keep up anymore. He also drank milk from a Dr. Brown's bottle.
- facial massages to stimulate the nerves in the face.
- tapping my finger on his tongue when it was out to make him aware of it. He was less than a year old. It didn't work all the time though.
- asking him "Where's your tongue?" to encourage him to point to it and in effect, pull it back in his mouth. This was when he knew what "tongue" was.
- using a z-vibe and Jiggler to stimulate the mouth muscles.
- using straw cups whenever possible to encourage lip closure, which helps with oral-motor tone.
- prompting him to say "mmmm" when we were working on the m sound in speech therapy.
- increasing his overall tone with various fine motor and gross motor activities.
- getting him to smile or laugh a lot. He almost always smiles with his tongue in plus it's just nice to see him smile or hear him laugh.
There are so many suggested activities to encourage tongue retraction. An occupational therapist and speech therapist will have lots of ideas. There are even programs like the "Horn Hierarchy" and "Straw Hierarchy" available at Talktools if one is willing to spend the money.
It's an ongoing effort. I imagine it will get easier as he gets older and more aware of whether his mouth is open or not and if his tongue is in or out.
TalkTools Horn Kit
TalkTools Straw Hierarchy Kit