Friday, November 30, 2012

New California Facebook Group

From a great mom in our group:

    We share a unique set of laws here in California so please join us in supporting, inspiring & educating each other! Please invite and add all your friends with children with Down syndrome and who live in California. This is our link to share: 

    This is a closed group, members only. Please feel free to request a membership. You may speed up approval time by messaging the Group Owner or an Administrator and telling them what your relationship is with a person with Down syndrome and what part of California you live in! We look forward to getting to know you!

    *Be advised* You may receive a message from Administrator requesting more information pending approval, please BE SURE to have your privacy settings set so the public can message you! YOU WILL NOT BE ADDED IF WE CAN NOT MESSAGE YOU SO PLEASE DON'T HAVE YOUR SECURITY SET SO HIGH THAT WE CAN NOT MESSAGE YOU! In addition: IF we do not hear from you within 7 days (OR if we can NOT send you a message!) your application will be rejected! You are always welcome to reapply, BUT, either change your settings to allow messages or send a message to one of the Administrators. This is for YOUR SAFETY, and the SAFETY OF YOUR CHILDREN! 

We have a Facebook group here in Arkansas and it is one of the best things that has happened here. I strongly recommend surrounding yourself with people who have common concerns and problems.  We try to get together once a month and we all have a ball. 

Wednesday, November 28, 2012

Oral Motor Feeding Information

(Taken from   then click on “Down Syndrome”) Please visit this great website to view the article and pictures. This is so important to learn while your child is young.

I am definitely not an expert when it comes to Down Syndrome-Oral Motor Feeding Skills….however….have been doing a significant amount of research and have taken (and continue to take) courses offered by Lori Overland…so I feel as if I do have information to share. If anything…..I hope to help parents and lead them in the right direction.

First I want my readers to click on the link below. This article was written by Sara Rosenfeld-Johnson…she is basically the guru when it comes to feeding and Down Syndrome. The link below discusses the 7 Myths about Down Syndrome:

This blog provides information related to the oral motor myths listed above….and then information about bottle and breast-feeding your baby with Down Syndrome:

This blog offers information about feeding and I really liked the pictures provided in reference to spoon-feeding your baby with Down Syndrome:


A very important aspect for oral motor therapy with babies/young children with Down syndrome is discouraging tongue thrust and encouraging lip closure. A very simple way to get this “oral motor therapy” in is in the way of spoon feeding. There’s a certain technique which can be done when spoon feeding to facilitate this.

This can be used on children who are very young – from the very first time they start eating solids!

Hold the spoon sideways, so that the side of the spoon is touching each side of the mouth, let the child get the food off it that way.

Immediately turn the spoon the other way (still sideways, but facing a different direction) and feed the child.

Then turn the spoon again the opposite direction and let them get the last bit of the food off.

It is best for this to be done 3 times in a row, like the above picture shows, because then it helps keep that tongue in. If you just do the sideways spoon feeding once, then the child can put his tongue out to help swallow the food or lick the food off of his lips. After you do it 3 times the child will hardly stick his tongue out at all after that last bite, since he has already been swallowing the food.

Try it on yourself – Feed yourself with the spoon like you normally would – your tongue protrudes forward this way. Feed yourself with the spoon sideways, your tongue is pushed back. It works so well.

**** please visit: for oral motor feeding tools needed for children that have Down Syndrome, low muscle tone, oral motor weaknesses and sensory feeding concerns.

I have been taking another class offered by Lori Overland…and wanted to post pre-feeding exercises that should be used prior to your feeding sessions. These exercises are not only for children that have Down Syndrome…but also for those who present with low muscle tone. The goal of the exercises is to improve strength and mobility of the muscles needed for feeding and also for speaking.

PRE-FEEDING EXERCISE                                                                                                                      

1.   Palatal massage: the goal of the palatal massage is to maintain the shape of the palate. Find the palatal raphe:

 The palatal raphe is a rather narrow, low elevation in the center of the hard palate. You can run your tongue along the palatal raphe…starting from the bump behind your teeth…follow the palatal raphe until you get to midline. It is like you are running your tongue along a line…you should be able to feel it. The reason you are running your tongue along the raphe is because you need to find the midline point. You will know that you are midline on the palatal raphe when you have found the bump. So that will be your starting point for this exercise.

I think it is pretty easy to find the bump at the top of the palate. Remember to start your tongue behind your front teeth…and run your tongue along your palate…straight back….when you find the bump you will know that this is the starting point….the point where you will start this pre-feeding exercise with your little one.

Now…inside your little one’s mouth you will find the bump…the bump lies between the two halves of your palate. Once you find the bump on her palate….use your index finger and run the pad of your index finger down to the lateral ridge (the spot where her teeth will insert)….then roll back up to mid line to the palatal raphe…and then back down to the other side of the mouth. So to be clear…you are running your finger sideways…from the bump on the top of the palate to the lateral ridge…(the spot where her teeth will insert)

Each side should be massaged four to five times prior to the feeding. The goal of this exercise is to maintain the shape of the palate. Remember the palate fuses around one year of age.

2.  Maintaining Lateral movement of the tongue:

For this exercise you should use:  A Toothette

….be sure to cut the wings of the Toothette when working with an infant or toddler…the Toothette is too large for an infant or toddler with the wings.

An infa-dent  or A Nuk brush:   

   All of these tools can be purchased at

The goal of this exercise is to stimulate the sides of the tongue to improve tongue lateralization. This means the child’s ability to move the tongue to the side. Remember this is a skill she will need for feeding and for speaking. When working on this exercise start at the back of the tongue and move towards the front of the tongue. Be sure to use four to five strokes on the left side of the tongue and then four to five strokes on the right side of the tongue. When you are doing this exercise….you should see the tongue moving to the side.

3. Maintaining Phasic Bite/Munch Pattern:

What is a phasic bite?: A neurologic reflex present in infancy where pressure on the gums causes rhythmic opening and closing of the jaw.

Use your index finger and stimulate the lower gums from back to front. You are looking to see if this caused a rhythmic opening and closing of the jaw……a munch pattern. This exercise will teach chewing skills. ( I will post over the next week or so…the chewing hierarchy….specific to exercises that should be done to improve chewing skills in little ones with Down Syndrome or with low muscle tone).

4. Pacifier Rock:

I could not find a good picture of the pacifier that you should use…just be sure it is not one that has a flat-bed on the bottom of the pacifier (the part that goes in the baby’s mouth)….it should be an elongated shaped pacifier.

With your middle finger under the jaw….and your pointer finger on one side of the mouth…in the corner…and your thumb on the other side of the mouth…in the other corner….you will be ready to help your little one.

Use your middle finger to help the jaw to come forward…and your thumb and index finger to move the lips into a pucker/kiss. You will be using your middle finger to rock the jaw back and forth….and your index finger and thumb to improve lip rounding.

5.   Tongue Bowling:

Children with low muscle tone may have a flat tongue that may protrude forward.  Stroke the tongue…start at the tip and work towards mid-line…this should create tongue bowling. This exercise should be done four to five times.
6.   Massage:      

Using your hands or the textured sensory bean bags offered by

Massage wakes up the muscles…very good for children with Down Syndrome and children with low muscle tone.  Using your hands or the textured sensory bean bags offered by  The following exercises should be done four to five times:

1.       Start at the TMJ

              and move down towards the corners of the lips         .

2.      Start on the sides of the nostrils and work down towards the lips.

3.      Start under the nostrils and work down towards the lips.

Jigglers add calming and organizing sensory input, and can be used for oral exploration, reducing “fixing” in the jaw, and increasing awareness. Instructions included. Requires one AA battery which is included with the Jiggler.  However….be sure to know that too much vibration on low tone children may break down muscle tone. Be sure to consult with your licensed speech and language pathologist before using a vibrating tool.

7.   Tap and tone:

Just like if you were going to the salon and getting a facial….you will be “tapping” the child’s face with the palms of your hands….the goal is to tone and strengthen the muscles of the face and cheeks. To strengthen the lips….tap on the lips and make the “O” sound….just like in the song Old MacDonald had a farm…remember….E-I-E-I-”O”. Tapping on the lips will improve the tone and strength of the muscles of the lips and improve lip rounding.

8. Upper lip mobility:

You will be using the Toothette indicated above…found on to improve upper lip mobility. Remember for infants and toddlers you may have to cut off the wings so that it is the right size for your little one. You can wet the sponge if the child does not like the texture of the Toothette.

The Toothette goes inside of the mouth….start on the corner of lips…and move the toothette under the lip to midline….repeat this four to five times…and then move to the other side of the mouth. Midline…is the middle of the top lip.

With older kids you may purchase:Vibrator & Toothettes – T alkTools®   This will add more sensory information and more likely to get mobility. With the older kids you may also use the Z-vibe….it comes with three different heads.


To promote upper lip mobility use the Z-vibe with the yellow head. You will be doing the same exercise indicated above under upper lip mobility. The Z-vibe adds more information. It has a firmer rubber tip. Remember to perform the exercise from corner to midline.

If the older child is resistant to using these tools…use the back of a toothbrush…use a vibrating toothbrush….some of the older children can be taught how to do this exercise on their own.

9.  Ice Stick to improve lip rounding:

Ice Sticks can be used to develop oral placement/feeding and speech therapy programs and are excellent for achieving lip rounding and lip closure. The ice stick can be purchased at

In order to improve lip closure place across the lips (so the ice stick should be presented horizontally) and have the child make closure with their lips on the ice stick. You can also ask the child to kiss the ice stick to improve lip rounding. To further improve lip rounding: place the ice stick inside of the child’s mouth (vertically).Lip rounding can also be addressed with the Jigglers indicated above….turn the Jiggler on and ask the little one to kiss the Jiggler.

What if your child can NOT pucker her lips for a kiss. How can you help her with lip rounding……therapist should stabilize the jaw with her middle finger under the mandible….so you do not want the jaw to move….index finger and middle finger should be in either corner of the mouth. Since the child is not able to pucker her lips for a kiss just yet….you will be using your index finger and thumb to help her to get her lips into the pucker…being sure to keep her jaw stabilized with your middle finger. Now help her to kiss the Jiggler.

Remember…..too much vibration for children with low tone may break down muscle tone….so be sure to consult with your licensed speech and language pathologist for guidance. The vibrating tools should not be used as a toy….it should only be used therapeutically.

HYPER-SENSITIVITY AND HYPO-SENSITIVITY WHAT DOES IT MEAN:                                                             

Children with Down Syndrome typically present with low muscle tone. Children with low muscle tone may    present with oral motor feeding concerns. I have spent some time discussing Down Syndrome feeding…so please be sure to read under the Down Syndromepage for more information.

Today’s post is specifically related to two factors with regard to Down Syndrome feeding: hyper-sensitivity and hypo-sensitivity. Children with Down Syndrome typically are hypersensitive to texture…..this means that they may have difficulty in tolerating various textures. What this means is that their motor systems may have some difficulty in chewing…therefore…following the chewing heirarchy needs to be addressed (I will post on this in the next few weeks). Children with low muscle tone prefer crunchier textures…and also foods thare are easy to swallow. The crunchier foods due have to be chewed….however, their hypersensitivity is related to the textures indicated below. So remember…they have hypersensitivity to texture…and the motor system may have difficulty in chewing, however, the child’s preference will be to those hard crunchy foods. It is important to remember that their motor systems may have difficulty in chewing (that is why the chewing heirarchy is important). Down Syndrome children will prefer the harder crunchier foods….and may have difficutly with various textures as indicated above.

In my experience, I have found that one of the hyper-sensitivities may be to certain “mixed textures“, for example, a Stage 3 baby food is a mixed texture. You have the pureed food…and then bits and pieces of a more solid texture. Children with hypersensitivity may have difficulty with this mixed texture. So, I have learned that children with a hypersensitivity when it comes to eating…this hypersensitivity is specifically related to texture. Not only is the texture issue related to mixed textures…these children also typically have difficulty with the “in between textures“….that is what I call them. These are the textures that do require some chewing….however are NOT solids. Examples of the in-between textures include: soft cheeses, eggs, soft pasta (not Al Dente), deli meats, steak, chicken, vegetables and many fruits. These in-between textures are difficult for the children that present with a hyper-sensitivity feeding issue. So…to re-cap….children with Down Syndrome typically present with a hypersensitivity concern….and this concern is specifically related to their ability to tolerate the mixed textures and the in-between textures. They typically prefer harder crunchier foods….be sure though to follow the chewing heirarchy (which I will speak about)….you are following the chewing heirarchy so that you can teach chewing…..and doing the chewing exercises to help your little one with chewing.

Children with Down Syndrome and oral motor feeding sensitivities typically do NOT have a sensitivity to the Stage 1 foods and foods that do not require ANY chewing….examples of other foods besides Stage 1 foods would be and not inclusive to: applesauce, yogurt, and pudding. These textures do not require any chewing and are easily swallowed.

The next texture that can be tolerated by children with food sensitivities (in my experience)…. are hard crunchy foods. This texture needs to be first bitten with the front teeth (so children that have biting issues…a different concern…may have difficulty with this texture)….next lateralized to the side…. then chewed and swallowed. Examples of a solid texture include: cookie, cracker, pretzel, Veggie Sticks….and are not limited to these foods.

So to go back to children with Down Syndrome…they are hypersensitive to texture….so they may prefer hard crunchy foods (this food does require biting and chewing…however is comprised of one texture) and a texture like a Stage 1 that does NOT require chewing. However, children with Down Syndrome have a difficult time…due to hypersensitivity to mixed textures like a Stage 3 baby food and the in-between textures. Other foods…in my experience…that that may be difficult for these little ones include…and are not limited to the following: oatmeal (similar to a Stage 3 food), soft cheeses, bananas and soft fruits, deli meats, eggs, soft pasta (easier time with Al Dente), vegetables…..and other foods that are NOT hard and crunchy…however still require some biting with front teeth, lateralizing and chewing.

My oldest son had feeding issues and he was hypersensitive to textures…up until almost first grade….he came up with a great word to describe food that he could not tolerate: SWERBALIE. I have used that word with parents to help them understand what their little one may be thinking. For my son….he could not even look at food like a cantelope….he would gag just by the sight of it… looked to mushy to him.

My second son…Andrew…he is ten…he has hypersensitivity issues now…although he did not as a younger child. With him I try to follow the SOS approach when he is eating. When following this model….children are encouraged to try new foods….however they slowly work through the steps with new foods….the steps are (and have been modified a little for my son): LOOK, SMELL, TOUCH, TASTE. Remember children with sensitivity concerns may have difficulty with just looking at the new food….they may NOT be able to smell the new food….and for most…touching the new food is too much for their sensory neurons to handle. I have found in my experience as a therapist and as a parent…PATIENCE is the most important word.

Ok….let’s go back again to Down Syndrome feeding and the other word: hypo-sensitivity. This means that their sensory neurons need more information with regard to TASTE AND TEMPERATURE. They may like spicier, saltier or really sweet foods. This is because their sensory neurons actually need more information. I had a little one I was working with years ago and she was about two years of age…and loved sopressata…this is an Italian cured salami…and is definitely spicer. She loved sopressata….and ate it without any reservation. Some children with Down Syndrome and other feeding issues may have less of a reaction to foods that are colder or we may want to increase the temperature and make foods colder than typical to really stimulate those sensory neurons. And when doing feeding therapy we may alter the taste of the food (by increasing flavor) in order to give their sensory neurons more information.

So remember….when addressing oral motor feeding with children that have Down Syndrome and oral motor sensitivity issues….the three factors to consider: texture, temperature and taste. Finally, please note that the two factors of hypersensitivity and hyposensitivity is related to the interaction between the sensory and motor system.


I am hoping that this post in conjunction with the information I have on my Down Syndrome page is helpful to those of you that are in need of information regarding Down Syndrome feeding. This post is specifically in reference to tongue protrusion and how you can reduce tongue protrusion and improve tongue retraction in children with Down Syndrome.

Using a Playtex Nurser Bottle

…the kind with the drop-ins….is the bottle to use when feeding your baby with Down syndrome.. It is important to note that when feeding your little one….you also have to be sure to adhere to the following:

1. Baby should be fed in more of an upright position with chin down…..chin should be lower than the ears. Most of us…..when feeding our little ones….feed her in more of a cradled position….with her head tilted back… this position her chin is higher up than her ears. We do not want that position… sure that your little one’s head has her chin down….ears should be higher up than chin.

2. Slow to medium flow nipple….not the fast flow. Now….if your little one has some cardiac concerns…the slow flow nipple may be too difficult for her…in the sense that she may take a longer period of time to drink the bottle…because the nipple is slow flow. My experience has been that when a little one has cardiac concerns….and she is using a slow flow nipple….she really is working extra hard to drink the formula or breast milk….and if it is too difficult for her…and she is working too hard….she may be burning more calories than she is getting. So be sure to consult with your speech and language pathologist and your little one’s pediatrician with regard to the type of nipple.

The fast flow nipples….are just too fast….and the muscles in your little one’s mouth are not getting enough of a “work out”. We want to strengthen the muscles of the cheeks, lips and the tongue….and encourage tongue retraction.

3. Using the Playtex Nurser….in the chin down position: The first step is to remove all of the air from the bottle and nipple…..and next present the bottle to your little one. The correct presentation: the bottle should be in a downward position…by this I mean that the bottom of the bottle is down…and the bottom of the bottle is lower than the top of the bottle ( a downward angle). Typically when we feed babies…the baby is in that cradled position…with head back…and the bottom of the bottle is higher up in the air…so the bottle is angled up. I want the bottle angled down.

4.You may initially need to push some of the formula or breast milk into your little one’s mouth…so she understands that she needs to really suck in order to obtain the liquid. When feeding your little one with Down Syndrome…with this bottle and in the above position…you are forcing her to use tongue retraction in order to suck the liquid out of the bottle. When drinking a bottle the typical way….the tongue protrudes during sucking. If we feed your baby in the above position with the Playtex Nurser she will use tongue retraction….as well as strengthening the muscles of the lips, cheeks and tongue. It may take her a little bit of practice…but she will get it!



When your little one is ready for a sippy cup…..DO NOT use the sippy cups that have the inserts…these promote tongue protrusion. I love the Honey Bear Sippy cup….which you can find on the above web-site. Your little one will have to retract her tongue just as she did with the Playtex Nurser. The Honey Bear Sippy cup is great for all kids…not just kids with Down Syndrome… be sure to try this with your little one. I have had little ones at four…five and six month of age (with Down Syndrome)…using the Honey Bear.

Hazelwood and Baltic Amber Necklaces

Hazelwood necklaces:
Hazelwood products help to create an alkaline environment in your body which may help prevent and appease many of the symptoms caused by acidosis (being too acidic).
The use of hazelwood jewelry originated long ago when Aboriginal people discovered that they could put hazelwood chips on their babies’ necks to soothe teething pains. This lost art was revived only a decade ago when a few companies in Quebec, Canada (where the hazelwood trees grow indigenously) rediscovered the unique properties of hazelwood. Since then hazelwood has grown in popularity as more and more people have experienced its benefits. Most notably, Hazelwood has been able to help many people with skin issues such as eczema, providing a natural alternative to many of the more expensive, intensive, and messy treatments.

Emmalin had a terrible time with reflux. We tried everything: coming off gluten and dairy helped a lot but there were still some issues. We purchased a hazelwood necklace and after 3 days her reflux problems have all but disappeared.  Robin and I have been surprisingly VERY satisfied with these necklaces. The girls get a ton of compliments on them too.

Baltic Amber necklaces:
Baltic amber is not a “stone” but a natural resin. As it warms with the body’s natural temperature, Baltic amber jewelry releases healing oils containing succinic acid which are absorbed into the skin and bloodstream.
Baltic Amber has some of the highest concentrations of succinic acid found in nature, and this is what makes it so special. Succinic acid is a natural component of plant and animal tissues, and its presence in the human body is beneficial in many ways. Basically you can think of it as a natural Ibuprofen.
Commonly known as "teething jewelry" in Europe, Baltic amber has been a natural remedy for pain relief for hundreds of years.
Amber is also known to reduce inflammation of the throat, ear and stomach and to fight irritation, infections and respiratory disease as it dramatically improves the body’s immunity.
Natural Baltic amber jewelry is a completely non-invasive remedy for side effects associated with teething, such as lack of appetite, redness in the cheeks, swollen gums, diaper rashes, upset tummies, earache, fevers and colds. Baltic amber is also a natural analgesic that will calm your child and is recognized by allopathic medicine specialists as antispasmodic and anti-fever. Many adults report improvement of arthritis discomfort and carpal tunnel pain in their hands when wearing amber on the wrists.
What Can Baltic Amber Help With?
-Pain Relief: Baltic amber contains analgesic properties and helps take the edge off of many types of discomfort associated with dental issues, headaches, joint pain, etc. It is a well known European method to help decrease the pain associated with teething.
-Strengthening the Body's Immune System: In many different and subtle ways, succinic acid helps boost the body's own natural healing ability and immune system.
-Restoring Energy: The human body naturally produces succinic acid. The salt of succinic acid (succinate) is one of the most active substances in the processes of cellular respiration and intercellular energy creation. Succinic acid restores oxygen and energy supply to depleted cells and helps the body return to a normal, functioning state.
-Maintaining Wellness: When the human body reacts to stress, the body’s cells begin to use oxygen more quickly. Oxygen plays a central role in the intercellular creation of energy, and a lack of oxygen can result in feeling lethargic.
(Oxygen is alkaline-forming in the blood and maintaining a slightly alkaline blood Ph helps keep us healthy (see “About Hazelwood” for more information on acid/alkaline blood levels). Whenever the body functions in a state of low oxygen, it is much more susceptible to illness.)
-To Help Break a Cycle of (chronic) Inflammation:
Where chronic inflammation is present, disease lurks.
When the body’s cells are chronically inflamed the human body’s immune system response is to increase production of free radicals. Chronic overproduction of free radicals results in inflammatory-related disease. Chronic inflammation is a common denominator of many seemingly unrelated diseases.
Learn more at - there are many different websites, but these are by far the cutest and most cost effective.  They are shipped from Canada, so it does take about 2-3 weeks to get them in, so re-order before your current one changes to the darker brown which indicates it is time to change the entire necklace.

Tuesday, November 27, 2012

Oral Motor Myths of Down Syndrome

The Oral-Motor Myths of Down Syndrome
By: Sara R. Johnson, MS SLP-CCC

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 (#7).

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              27    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.

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 careprovider 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 oral-motor 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       28 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 weeks.

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 inter-dental 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.

Sara Rosenfeld-Johnson, SLP of Tucson, Arizona, is the principal of Innovative Therapists International and Talk Tools, offering muscle-based seminars and products/tools emphasizing in practical therapy techniques for SLPs, PTs, OTs, and concerned parents/teachers.

Down syndrome brings joy to families - research study

Down Syndrome Brings Joy,                                                        
Not Regrets,for Many Families

Survey finds people living with those who have the disorder have been enriched bythe experienc By Amanda Gardner   HealthDay Reporter

FRIDAY, Sept. 30 (HealthDay News) -- Louise Borke learned that her infant son had Down Syndrome when he was just a few days old.

Her reaction? "Shock and surprise, trepidation and anxiety," she recalls.  Today, 22 years later, Borke can look back at life with her son, Louis Sciuto, and say, "It's been fun. It's had its challenges -- I won't deny that -- but it's been fun. It's been rewarding and I have no regrets."

Borke is not alone in her views. In a series of recently completed surveys, 96 percent of parents expressed no regrets about having a child with Down Syndrome and nearly eight out of 10 said the child had enhanced their lives by teaching them patience, acceptance and flexibility, among other things.

Siblings had similar feelings, with 94 percent feeling "pride" about their sibling and 88 percent saying the sibling had made them a "better person."  And virtually all people with Down Syndrome who were queried said they were happy with their lives and liked who they are.

"The voices we heard were very satisfied and very positive about their lives despite the fact that they have real challenges," said Dr. Brian Skotko, who conducted the surveys, which appear in the October issue of the American Journal of Medical Genetics.

Skotko, a physician with the Down Syndrome Program at Children's Hospital Boston, hopes the results will help families make decisions regarding their unborn babies, especially as prenatal tests become more widely available.

Right now, prenatal tests for Down Syndrome run the risk of miscarriage and only about 2 percent of women actually get tested.

But new, virtually risk-free blood tests are about to hit the market and Skotko wanted to make sure that parents grappling with this "complex, sensitive, difficult decision" had good information to go by.

No one knows exactly how many women who learn their baby will have Down Syndrome through prenatal testing opt to terminate their pregnancies. But small, selected studies suggest the numbers could be as high as 80 percent to 90 percent.

"Once everyone has the opportunity to learn prenatally with a simple blood test, what decisions will Americans make about pregnancies and will babies with Down Syndrome slowly start to disappear?" said Skotko. "People with Down Syndrome should be able to describe for Americans what it means to have the condition."

Julie Cevallos, vice president of marketing for the National Down Syndrome Society (NDSS), said, "This research is a great new development. What's particularly exciting is that you're hearing from families and siblings and self-advocates directly.

"The more information and the more accurate information coming straight from families [the better]. Sometimes there's inaccurate information out there, or just stereotypes," added Cevallos, who's 2-year-old daughter, Nina, has Down Syndrome.

Skotko, who is an NDSS board member, has a 32-year-old sister who has Down Syndrome. "She has an active and robust social life, more than I ever had," she related.  As for Louis Sciuto, Borke said that he has just landed a job at Target and also has an active social live, keeping up with the latest movies, playing sports and double-dating with friends.

What would she tell parents who have learned their child may have Down Syndrome? "I would tell them don't be afraid. It's different but it's not worse. Louis has had friends whose parents have told me that they believe their children are better people for having known Louis."

More information  Visit the National Down Syndrome Society for more on this condition. Copyright © 1997 Sara Rosenfeld-Johnson, M.S., CCC-SLP