This sucks. That suckles. This bites.

(a little bit of oral placement humor there) (i'm so funny)


If you're just starting this thread, you should read JAWS first so you understand the foundation of the tongue.


Many (most!) (nearly all!) individuals with Down syndrome have weak jaws.   They have decreased sensory awareness in their mouths.  They have flaccid tongues.  They have open mouthed postures.   They have poor feeding skills and difficulty with articulate speech.


This doesn't have to be.  


When a baby is born, the nursing/feeding pattern consists of a suckling pattern that utilizes a forward/backward movement of the tongue.  The tongue presses against the roof of the mouth, towards the front (near where the front teeth are--what will be come the hard palate).  It's sort of a horizontal movement, not an up and down motion.


If you pretend that you're suckling from a bottle, you can feel that your tongue is in a forward position.  If you open your jaw, your tongue will be in the same place that many individuals with Down syndrome hold their tongue, forward, just over the lower teeth.


Now pretend that you are drinking through a straw.   Your lips are rounded, your tongue is pulled back (retracted), and the tip is pointed downward behind your lower incisors.  


These two positions are very different and use different muscles and different motor patterns.  


When a baby begins to eat pureed foods, she initially uses the same motor pattern that she uses to suckle from a bottle or breast.  The first puree feedings are generally pretty messy, with more squirting out of the mouth than makes it down the hatch.  She doesn't use her lips to take the mashed banana off the spoon; more likely, Mom shovels it in and sort of scrapes the spoon off her gum ridge, or teeth.   Then Baby uses her tongue as she has been doing all her life--a front/back pattern, which promptly results in the tongue pressing the food against the palate and  the food going forward rather than going back to the esophagus.


Over the course of several feedings, Baby figures out a new motor plan that will work to get the food to the back of the mouth and swallow.   The new motor planning uses an up/down jaw movement, where the tongue presses up against the palate and the lower jaw rises up so that the molar gum ridges are almost touching  (pretend you're swallowing something--saliva for instance--feel where your tongue is when you swallow, and notice where your teeth are--how far apart are they?  They're not touching or clenched, but have a little space between them.)    This motor plan is a precursor to chewing.  It's also very similar to straw drinking.

In order for the tongue to learn this new pattern, the jaw needs to provide stability so the tongue can dissociate.


Kids with low tone don't have the typical jaw strength that is necessary to give the tongue a reliable foundation.  The tongue is all  muscle.  Just like any muscle, it can be exercised.  So while the baby is still suckling, it's a good idea to start working on creating the new up/down motor pattern to gradually strengthen the jaw.


We have a special visitor to Shenanigans today to help you understand how to do this!   Maddy is a 
darling two year old girl who has Down syndrome.

Maddy has had a feeding tube from a very young age, which has resulted in oral feeding and drinking challenges.  Now that she is medically stable, her mom has been working on oral placement exercises to improve Maddy's feeding and drinking. The goal is for Maddy to take all her nourishment through the mouth so the g-tube can be removed.


Since Maddy never used a suckling pattern, she doesn't have to break that motor pattern.  However, she doesn't have a very organized mouth.   As with many children with Down syndrome, she has asymmetrical jaw strength.  Her right side is weaker than her left. So her exercises include working twice on the right and once on the left (in a right-left-right pattern).  


Here are some of Maddy's OP tools.

The star teether vibrates when it is bitten.  This provides excellent sensory feedback for the up/down movement we are trying to encourage.


The mouse-head is attached to a z-vibe.  

The z-vibe is sort of like a nuk brush, but it vibrates to provide oral sensory input.  There is a large variety of tips that fit on to the z-vibe, from spoon attachments and nubby tips--some are scented, some soft, some hard--to animal shaped heads.   The mouse-head is used on the skin of the cheek, from the TMJ (temporomandibular joint) following along the jawline and ending at the corner of the mouth.   (Sorry I didn't get video of that--I thought it was recording, but, no.)  Generally, if you touch the corner of the mouth, the lips will close (this means the jaw is closing too!).


The amount of vibration is adjustable--it can vibrate all the time, or it can be set to vibrate when baby/toddler/child/adult bites on it. For the external work, you'd set it to constant vibrate.


One of Maddy's oral placement challenges is that she slides her lower jaw from side to side instead of up and down.  In this video you will see Maddy's mom (Kimy) support Maddy's jaw to keep it from sliding.  She is not holding it all that firmly, but providing sensory input to help with stability.

To do this with a little baby, you can start with sensory input in the mouth--from your (clean) finger rubbing the molar gum ridge, and pressing down. Using a nuk brush is another option.  It's good to touch as many areas in the mouth as possible (without getting bitten!).  In and around the gums, cheeks, lips, gently on the roof of the mouth, down where the cheeks meet the gums.  


Maddy is learning to use her molars to chew.  Many individuals with Down syndrome take bites of food, but they don't fully chew it.  They tend to suckle it down.  This can result in aspiration or choking/gagging.  Sometimes food gets stuck up on the palate.  Not so good.


Maddy's TalkTools program plan has her biting on the red chewy tube.   Kimy is putting a veggie stick inside the chewy tube.  When Maddy bites on the chewy tube she gets a little flavor reward for biting.

Sometimes Kimy just has Maddy do a "slow feed", which is where she holds the veggie stick and places the stick on Maddy's back molar for her to bite.

Did you notice the honey bear?  Maddy is doing so well learning to drink!  (as a safety note, a bear bottle that is used for honey does not have the same kind of spout that this one has, and please, please do not use aquarium tubing as a substitute--it's dangerous and not food grade tubing)



This is a really long post, so I'm going to stop and give you a rest!  Yes, there is more...and Hannah will be my model for the next post.  Straws, bubbles, horns, bite blocks.  Such wonderful oddities used to normalize oral musculature!


To start at the beginning, click here.