What are the Myths of Down Syndrome

Thank you once again to Sara Rosenfeld-Johnson from www.talktools.com.  I wanted to re-post this article…which also can be found on my Down Syndrome page on the top of my blog.  Remember in order to decrease the myths of Down Syndrome you should be implementing the pre-feeding exercises…these also can be found on my Down Syndrome page.  And a big thank you to Lori Overland for teaching me so much about children with Down Syndrome.


Copyright © 1997 Sara Rosenfeld-Johnson, M.S., CCC-SLP


The Oral-Motor Myths of Down Syndrome


By Sara Rosenfeld-Johnson, M.S., CCC-SLP

Published in ADVANCE Magazine August 4, 1997

There is a visual impression that each of us holds

in our mind when we think of a child or adult with

Down syndrome. As a Speech Pathologist in private

practice for twenty-five years and as a continuing

education instructor for speech and language

pathology classes on Oral-Motor Therapy, I have

learned that this impression is a powerful teaching

aid. When I teach, I ask the participants to tell me

what they consider to be the characteristics of a

Down syndrome child, or any low-tone child from

an oral-motor point of view; without fail, I get the

same responses. Their portrayals have become so

predictable I have come to refer to them as the

“Myths of Down syndrome”. This is what these

professionals see: a high narrow palatal vault,

(Myth #1), tongue protrusion

(#2), mild to

moderate conductive hearing loss

(#3), chronic

upper respiratory infections

(#4), mouth breathing

(#5), habitual open mouth posture

(#6), and

finally, the impression that the child’s tongue is too

big for its mouth


These seven structural/functional disorders have

been plausibly associated with Down syndrome, so

why label them myths? Because the children my

associates and I have worked with over the past

fifteen years no longer exhibit these

characteristics. The therapeutic community has

inadvertently allowed these myths to flourish

because we didn’t recognize that they could be

prevented. These abnormalities emerge in most

children by the time they enter early-intervention

programs. What has been missing in our treatment

that has allowed them to develop? How do we

pursue prevention?

A quick review of some oral motor development

basics. Children are born with two cranial soft

spots. One on the top of the skull at midline and

the other under the skull at the midline. Soft spots

facilitate the birth process, allowing plates in the

skull to overlap, easing the infant’s downward

progress. After birth, the plates return to original

position, eventually joining between 12 and 18

months of age. When the plates meet at the top of

the skull, they take the shape of the brain’s

contour, giving us a round-headed shape. In the

Down’s population, this closing of plates may not

occur until 24 months of age.

The identical closing of plates occurs under the

brain in the plates of the hard palate. Just as the

brain lends shape to the top of the head, the

tongue shapes the palate. During the closing of the

palate, if the tongue is not resting habitually inside

the mouth, there is nothing to inhibit plate

movement toward midline. The result: myth #1, a

high, narrow palatal vault.

Can this be prevented? Let’s return to the infant at

birth. What is not commonly known is that even

children with severe low tone at birth, including

Down syndrome, are nose breathers. They

maintain their tongues in their mouth and upon

examination their tongues are not abnormally

large. Orally, these children look pretty much like

any other infant with the exception that they have

a weak suckle. This critical observation draws us to

the connection between feeding muscles and

muscles of speech.

In quick order, a cascade of events unfolds for

these babies with weak suckle. Many mothers tell

me they genuinely wanted to breast feed their

newborn but were unable because the child had a

weak suckle and/or the mother did not produce

sufficient milk. Absent a medical problem, the

difficulty is often that the child’s suckle was not

strong enough to stimulate the mammary glands

into producing adequate milk flow.

In this scenario mothers are traditionally

encouraged by physicians to use a bottle. Bottle

feeding is fine, when done therapeutically, but

mothers should be given meaningful choices.

Further, when bottle feeding is suggested for these

infants, the hole in the nipple is often cross-cut or

enlarged to make it easier for the infant to suckle.

The child is held in the mother’s bent elbow and

the bottle is held on a diagonal, nipple down.

Visualize this – the milk flows easily into the infant’s

mouth, but what stops the flow, allowing the child

to swallow? Tongue protrusion; myth #2. Excessive

tongue protrusion is a learned behavior that

creates a physical manifestation.

Keep visualizing this infant with low tone/muscle

strength. There is a sphincter muscle at the base

of the Eustachian tube whose function is to allow

air to enter the middle ear. If weak muscle tone

reduces the effectiveness of this sphincter muscle,

then in the described feeding position, milk is able

to enter the middle ear. The result: chronic otitus

media; a primary causative factor in conductive

hearing loss; myth #3

Copyright © 1997 Sara Rosenfeld-Johnson, M.S., CCC-SLP

Fluid build-up in the middle ear, and the resulting

infection, circumfuses throughout mucous

membranes of the respiratory system and

frequently becomes the originator of chronic upper

respiratory infections; myth #4. The nasal cavity

becomes blocked, the child transfers from nose

breathing to mouth breathing and we have myth

#5. The jaw drops to accommodate the mouth

breathing, encouraging a chronic open mouth

posture; myth #6. Because the tongue is no longer

maintained within the closed mouth, the palatal

arches have nothing to stop their movement

towards midline and we end up with a high, narrow

palatal vault, making full circle back to myth #1.

The child’s tongue remains flaccid in the open

mouth posture, at rest. Lack of a properly retracted

tongue position is myth #7. This enlarged

appearance of the tongue is therefore not

genetically coded, but rather the result of a series

of care-provider related responses to the very real

problem of weak suckle.

Understanding this scenario provides insight into

the characteristics seen in these children when

speech and language therapists begin to work on

correcting their multiple articulation disorders.

Addressing the oral muscles/structure from birth

offers a more effective, preventative therapy than

the wait-and-see approach taken today. These

physical features are not predetermined. Our

therapeutic goal should be to normalize the oralmotor

system through feeding beginning in infancy.

In infancy, nutrition is of primary concern. Our job

is to balance nutrition, successful feeding and

therapy. Goal one is to change the position in

which the child is being fed. Mouths must always

be lower than ears to prevent milk flow into

Eustachian tubes. The bottle position is altered to

introduce the nipple from below the mouth,

vertically encouraging a slight chin tuck. In this

position the child draws the milk up the nipple

predominately with tongue retraction. This position

and retractive action prevents milk from flowing

freely into the child’s mouth. The child no longer

needs strong tongue protrusion to enable

swallowing. It is also important not to make the

hole in the nipple larger.

Can children with weak suckle draw the milk into

their mouths in this position? Yes, if you don’t use

standard glass bottles. Bottles with the disposable

liners, in either 4-ounce or 8-ounce sizes, can be

filled with either pumped breastmilk or any variety

of formula, and the air can be forced out causing a

vacuum. This type of bottle can then be fed to the

child in an upright position. If the child has trouble

drawing the milk up because of weak suckle, you

can facilitate the draw by pushing gently on the

liner. When I have used this technique with even

the most severely impaired children, it has been

successful. After a week or so you will be able to

push less as the muscles will begin to get stronger.

Facilitation is generally eliminated within 3-6


Breastfeeding mothers follow the same principles.

Hold the child in a position where its mouth is

lower than its ears. Stimulate the mammary glands

while the child is suckling to increase milk flow.

This also enables the mother’s milk to come in

stronger. As the child’s suckle strength increases,

the need for gland stimulation will be eliminated.

A simple change in the position relationship of the

child’s mouth to the bottle/breast can improve

long-term oral-motor skill levels. That one change

prevents a series of abnormal compensatory

patterns to develop. It is so significant that I have

incorporated feeding intervention into the

treatment of all my clients with oral-motor issues

regardless of age or diagnosis. Even my third-grade

“regular” kids who are seeing me for an interdental

lisp work on developing muscle strength

and tongue retraction through feeding.

If Speech and Language Pathologists accept the

premise that normal speech is superimposed on

normal oral structures and functions, then the call

to provide early therapeutic feeding intervention

takes on an importance that we must both

acknowledge and affect.

About Kim

My name is Kim Marino and I have been practicing as a licensed speech and language pathologist since 1993. I work on Long Island providing diagnostic evaluations and services to children from birth to age 21. My experience is vast and am proud to say that I work with children that may present with articulation and phonological concerns, oral motor feeding concerns, Down Syndrome feeding, cognitive rehabilitation, auditory processing delays, receptive language delays, cleft palate feeding and sound development and expressive language delays. Most importantly, I am the mother of four amazing children and am happily married to my childhood sweetheart. I feel blessed to have my four children and so lucky to share this journey in life with my husband. I always had it somewhere in my head that I wanted to develop a blog or a website of some sort so that I could provide families with an additional resource....so that parents could help their little ones become a better communicator. And as I was developing this blog....I realized that I also needed to share the stories about my life and my children....and the funny things along the way that help to keep me smiling. Whether you are a working mother or not...finding balance between home, children and life can be a challenge....I hope that my blog helps to bring a smile to your face..and also some tools to help you help your little or big one. I hope you enjoy! Kim
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