DOWN SYNDROME

This page is in the process of being edited due to many recent conversations I have had with SLPs all over the world.  The discussion was specifically about the use of NSOMEs (non-speech oral motor exercises) in order to elicit speech….a big NO WAY! NOT GOOD!…NOT GOING TO HELP!…….in reference to encouraging speech production.

If you are working on speech..use speech to elicit speech!

Here are some great links which can be found on Caroline Bowen’s site:

http://clinicallinguistics.wordpress.com/tag/nonspeech-oral-motor-exercises/

http://speech-language-therapy.com/pdf/acq/bowen2005.pdf

http://www.asha.org/Publications/leader/2005/050614/f050614b.htm

http://speech-language-therapy.com/pdf/papers/lof2006.pdf

 

But what I was also searching for were specific answers to the use of NSOMEs for feeding therapy..and very specific to children with Down Syndrome.  I was fortunate enough to connect with Jennifer Bekins…here’s a little bit about her:

 

 As a speech-language pathologist at theJane and Richard Thomas Center for Down Syndrome at Cincinnati Children’s Hospital Medical Center, I’ve worked exclusively with children with Down syndrome (DS) for the last 7 years. My personal journey with DS started in 1988 with the birth of my sister April.

The views expressed on this blog are personal and do not necessarily reflect the views of my employer.

In addition to clinical care, I enjoy traveling and speaking about Down syndrome. For more information or to arrange a speaking engagement please contact me at jennifer.bekins@cchmc.org.

 

 And in my searching for answers…what I found is that the pre-feeding exercises listed below do not have any evidenced based practice (EBP)…what I learned is:  there are articles on the positive impact of pre feeding exercises

But..no specific research has been done.

So I talked more to Jenn…she gave me lots of great information…see below:

“Regarding models – I don’t follow one program. However, I frequently reference Prefeeding Skills by Suzanne Evans Morris: http://www.amazon.com/Pre-Feeding-Skills-Comprehensive-Resource-Development/dp/0761674071

When we see babies in clinic most have low tone, but some do not. If the child is breastfeeding or taking a bottle well we don’t recommend any exercises at all. Our role has been to guide parents in proper feeding skills and to make adjustments on skills outside of the norm. Unfortunately we’ve seen well intended EI therapists recommending a NUK brush to the palate causing oral defensiveness.

Babies with DS vary so greatly – especially ones with cardiac conditions (up to 50% of the population). Actually watching them feed and interact tells me a lot. Regarding your specific questions:

  *   Tongue retraction/protrusion: if a baby has tracheomalacia, pulmonary/cardiac issues, persistent congestion, etc. we do not work on retraction except as necessary for feeding. As the child ages (between 18-24 months) I have success teaching “tongue in” verbal cues and modeling during activities. We often see increased tongue protrusion during teething, which happens later in children with DS. It’s also seen when they are learning new motor skills – e.g. walking, sitting, etc which is to be expected.
  *   Lip rounding: Again, for feeding we work using non-nutritive and nutritive tasks such as sucking on a pacifier, gloved finger, or with external support using a bottle. For speech I work on the sounds and model in a mirror. Honestly, until a child is able to imitate sounds, imitation of lip and tongue positions is more about awareness and exposure to volitional control over the mouth. I really work on articulation clarity in children who have the cognition to understand what I am asking and can self-monitor/correct. Until then my treatment is very focused on total communication – speech, language, and alternative modes of understanding/expressing”

Here is some more information from Jenn..regarding low muscle tone and feeding skills:

Does low-tone mean my infant will have feeding problems?

Thanks Jenn for allowing me to post this great information..I thought this was especially important:

“I want to take time and answer all of these, but today I will focus on low-tone, feeding, and children with DS. First, it is important to realize there is a misconception about low-tone. Low-tone or hypotonicity has to do with the muscle at rest. Our muscles have the potential to move or contract. The muscles of a child with low-tone are slow to contract, do not always contract fully, and have difficulty maintaining this contraction. Because the muscles’ response is delayed, children with low-tone often have trouble with postural control (for sitting and standing), balance for walking, and protective/righting reactions when falling. Physical or occupational therapists work with children to build core strength (muscles in the stomach and back), develop head control, and improve stability through the arms and shoulders.

How does low tone affect feeding in children with Down syndrome?

Low-tone doesn’t always affect feeding skills. Some infants with low-tone have difficulty latching on to breastfeed or maintaining a lip seal around the bottle nipple. Liquid loss, excessively long feeding (>30 minutes to nurse/bottle feed), or frequent pausing when drinking from the breast or bottle, are problems often attributed to low-tone*. Babies are born with fat pads in their cheeks that help with sucking. When babies have low-tone, the cheek muscles may not contract as tightly. This may contribute to a weaker suck preventing adequate suction on the nipple.

*Keep in mind that these same symptoms can also be signs of other conditions such as congenital heart problems. This is why it’s important for someone trained in feeding to listen carefully to your child’s story, watch her eat, and interact with her before and after feeding.”

 

Thanks again to Jenn for the following information she posted on her blog…here is the link…with the information also stated below (given consent from Jenn):

“Before we go a further into feeding & children with DS, I’d like to pause with this post on how to figure out if a specific treatment is best for your child. Let’s say you walk into your SLP’s office and they are really excited about a continuing education course they’ve recently attended. They tell you all about it, thinking that the techniques would be perfect for your child. We’ll call the treatment X. After a session you think your 2-year-old with DS may be talking more. Excitedly you share this with your SLP. He or she is thrilled and recommends that you purchase Y so that you can do X at home. You agree even though the product is expensive because,

You will do anything to make sure your child is able to talk.

This is a common story. The therapist is well-meaning. The parent is searching for the key that will open communication. But the question remains; did treatment X really work? Was it maturation? Was it all the other parts of speech therapy that worked? Was it the supplement you started 3 months ago beginning to reach its full potential?

If you take a step back and begin to look hard at these questions it can be quite unnerving. I know. I’ve heard it. I’ve lived it personally and professionally. And after you take that step back, you have options:

A)     You plow ahead because anything that seems to work is worth it to you. You get on that bandwagon.

B)      You tackle these questions head-on, asking your therapist, physician, and friends what they know about X. (I know you. Googling has already been done). You want to know more before your sold on this. You are cautiously optimistic.

C)      You don’t say anything. Your therapist uses X in his/her sessions, but you can’t find the time to follow through at home. A few years later you donate Y to a new SLP confessing, “If you can use these, please do. If not, just throw them away for me.”

If you’ve been reading this blog for any length of time you know which option I encourage you to choose. (B! Pick B!)

Now that you’ve staring into the abyss of questions and doubts and hopes, what’s next?

Toolkit for Assessing New Treatments for Parents and Clinicians [1]

  1. Realize some degree of doubt regarding treatment claims is okay. Really. Even if “they” look at you like a crazy fool for not immediately buying in. First answer the nagging questions, then accept or reject what is being suggested.
  2. Find balance: learn to be open to new ideas while scrutinizing them. Look for compelling evidence* before you choose to believe the claims.
  3. Look for confirmation of the treatment claims by others outside of the treatment. In other words – research supporting the claims, conducted by those with no monetary interest in the product or program.
  4. Ask if the claims have been debated by professionals. If so, why? Remember treatment should be based on data that shows effectiveness. Unfortunately, there is little research in DS regarding specific speech/feeding treatments. However, many studies have included children with developmental disabilities or disorders common in children with DS. Some treatments have 1 study that support its use and 10 more that show it doesn’t work. It’s not personal; it’s fair. Look atall the evidence, not just the articles that support claims.
  5. Be wary of the following terms as it relates to specific products or programs: anecdotal evidence (In my own practice…, my child starting speaking after using X), case study, expert opinion, authority, guru, testimonial, etc. While these terms can be convincing at first, they should lead you to…more questions. Don’t despair AND don’t end your search here!
  6. Is it too good to be true? One technique cannot possibly be good for all children or all disorders. It’s more likely that the treatment is not as effective as claimed. I illustrated this with two pictures side-by-side of a little girl with DS in a presentation at the 2011 NDSC Convention in San Antonio. The first she had her tongue protruding, the second it was in her mouth perfectly. The technique? Nothing. Just an instant later with the same camera. You can’t believe everything you see.
  7. Facebook Frenzy. Has is caught a lot of attention online? Is it showing up in your Yahoo! group, or Facebook news feed? This should be processed as: proceed with caution. Just because someone claims a treatment works online, in the popular press (like a parenting magazine), or TV show doesn’t mean it’s going to work for your child. Remember a couple of years ago when a child with Autism was shown using an iPad with a specific type of app? Do you know how many families have come to our clinic requesting that app? Unfortunately, it’s not the best fit for most children with DS. *Evidence comes from peer-reviewed journalswhere researchers discuss their studies. Self-published books or trade magazines (Advance) are not included as evidence.
  8. Pseudo-scientific jargon AKA words meant to sound scientific. Be aware that most treatments/products/programs won’t sound absurd. They are well marketed and use terms to make customers (that’s what you are) believe claims. Ones I’ve heard includestrengthens muscles in children with hypotonia (low tone),improves tongue retraction (When? For how long? For what?), brain based program, etc.

Phew! That’s a lot to digest. So, I’ve put it in simple terms on this worksheet for you.

Ultimately, the decision to use a specific treatment is up to you. Even if you find out it’s beneficial in DS, that doesn’t mean you have to use it. Keep in mind that any program has to fit within the boundaries of your family in terms of:

  • Cost – Do not, I repeat, do not break the bank to purchase a must-have product(s)
  • Duration – How long the program is needed
  • Intensity – How frequently is the product used
  • Reality – Are you ready for the commitment now?  What barriers exist that may prevent you from following through with the program? If not now, could you manage in 6 months?

Whatever you do, do not buy into a product or program out of guilt or desperation. It’s not worth it. Weighing your options wisely will give you peace of mind now and in the future.

References

[1] Lof, G.L., & Camarata, S. (Nov., 2011). Clinical science: Distinguishing fads, myths, and evidence. Seminar presented at the National Convention of the American Speech-Language-Hearing Association, San Diego, CA.”

 So from what I have recently learned…the below pre-feeding exercises do not have any specific EBP….does that mean I am eliminating them from the therapy plan?  I will have to determine…evaluate and do more research.  I will keep them on here now…until I have more questions answered.

 

Jennifer Bekins states:

“Am I personally against pre-feeding exercises? In short, no.  However, I want to emphasize that little research has been done on these techniques. Peer-reviewed research specific to DS and pre-feeding exercises is non-existent. However, that doesn’t mean a well-trained SLP shouldn’t use them with your child. Instead, these exercises may be one part of the feeding/swallowing treatment plan developed by a therapist who understands swallowing disorders.”

_______________________________________________________________

Thanks to Lori Overland for sharing this article with me.  In my search for more information regarding the pre-feeding exercises…specific to children with Down Syndrome…I found this article very informative. http://div13perspectives.asha.org/content/20/3/60.abstract

 The Goal of the pre-feeding program is to develop the motor skills for feeding.  Following task analysis/evaluation of the sensory and motor systems, the clinician designs a program to help the child develop skills needed to support safe, nutritive feeding (Overland, 2010).

 

PRE-FEEDING EXERCISES:

Thank you to Lori Overland for giving me permission to post the following strategies listed below.  I took her six hour seminar class on: Developing Oral-Motor and Feeding Skills in the Down Syndrome Population.  Thanks Lori for teaching them to me and for allowing me to pass on the information!

PRE-FEEDING EXERCISES

 

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 

 

A Nuk brush 

 

All three of these tools can be purchased at www.talktools.com

 

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 www.talktools.com

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.

Massage wakes up the muscles…very good for children with Down Syndrome and children with low muscle tone.

 

 

***if your licenses speech and language pathologist wants you to use a vibrating tool.. www.talktools.com has 3 cute ones…

 

talktools

 

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 www.talktools.com 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 – TalkTools®

 

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 www.talktools.com

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.

 

 

10Cheek Stretch:

What you will need:

Either the Zvibe/yellow preefer head (please note when you click on this link…you will see the yellow preefer tips..you will stil need to purchase the handle for it)….okay you can use either the Zvibe or an iced toothette.  Or with a baby you can use a gloved hand.

What you will do:

Present the tool in the cheek near the upper lateral molar ridge

Make a “c” inside the cheek by rolling the tool from top to bottom (starting by the upper gums and rolling down toward the lower gums).

Five times on the left side and five times on the right

 

 

 

 

 

 

Based upon my feeding experience…I have found that side presentation of the spoon helps with tongue retraction…and decreases the suckle of the food off of the spoon.

The article below was taken from the got down syndrome blog.

SPOON FEEDING:

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.

 

*****I thought the link below would be helpful to view spoon feeding:

More thanks to Latricia and to beautiful Lila of course!! For sharing and demonstrating spoon-feeding in children with Down Syndrome.

 

Click on the link below to connect to the YouTube Video

http://www.youtube.com/watch?v=NhaVfERMHhs&feature=player_embedded

 

 

And…another link from Latricia…  pre-feeding exercises.  Thanks Latricia!

http://www.youtube.com/watch?v=wIGVH-1WwDI&feature=g-upl

 

 

And a big thanks to Latricia and Lila for allowing me to share this video: http://www.youtube.com/watch?v=BGXtbcVWnxU

 

 

 

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

 

Children with Down Syndrome may present with low muscle tone.  Children with low muscle tone may present with oral motor feeding concerns.

I want to start off by saying that the difficulty in feeding, based upon my experience and the courses that I have been taking, is attributed to the interaction between the sensory system and the motor system.  Your sensory system is the system that sends messages to your brain…..to tell you how you perceive something.  Your motor system is the system that sends messages to your muscles….telling them what to do.  In children with low muscle tone…difficulty in oral motor feeding is impacted by the interaction between the two systems.

With regard to the sensory system….children with Down Syndrome are hyposensitive to taste and temperature and hypersensitive to texture.  This means that their sensory systems need more information in reference to taste and temperature (hyposensitive)…and their sensory systems are hypersensitive to texture (too much of a certain type of texture may be difficult to handle).  So when a mixed texture like a Stage three baby food is in their mouth….the mixed texture gives their sensory systems negative information…and they may not be able to tolerate.  With regard to their motor system and this same texture (stage 3 baby food)….their motor system is not getting enough input (as the input they would be getting with a hard crunchy cookie)….and therefore they may not know what to do with it.   Remember too…their motor systems are weaker….and may fatigue easier.

So what can we do to help little ones with Down Syndrome tolerate these in-between textures….changing one of the variables may help…..for example…..fruit may be a texture that a little one with Down Syndrome can not tolerate…..so you can try freezing a blueberry…and see if this colder temperature gives them enough sensory information…enough information that they will be able to chew.  Increasing the sensory information will help with regard to chewing.  Why??? because the added sensory information will help the motor system to chew.  Remember the motor system is weaker and may not have the skills to chew…or the endurance to chew.

 

My experience has been children with low muscle tone prefer crunchier textures…and also foods that are easy to swallow.  The crunchier foods do have to be chewed….however, their hypersensitivity is related to the textures indicated below.  The harder-crunchier foods are easier in the sense that it does not send negative information to their sensory system and the hard crunchy texture gives their motor systems enough information to know that they have to chew.  However, also remember they may fatigue during chewing due to the lower muscle tone.

So remember…they have hypersensitivity to texture and hypo-sensitive to taste and temperature.  And their motor system may be weaker and not have the skills to chew.  It is important to remember that their motor systems may have difficulty in chewing (that is why the chewing hierarchy is important).  Down Syndrome children will prefer the harder crunchier foods….and may have difficulty 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.

 

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.

 

 

 

 

 

 

 

 

What are the tongue movements in an infant for drinking and chewing?

Thanks to Lori Overland for helping me to understand the tongue movements in infants better.  Lori has been a great resource to me.  Be sure to visit her site! http://www.alphabetsoupomtherapy.com/index.htm

 

 

Development and movements of tongue:

1.  Bottle/Breast Feeding:

During bottle feeding or breast-feeding the tongue does a back and forth motion in order to draw the liquid from the breast or bottle.  There is 50% retraction of the tongue and 50% protrusion of the tongue.  This is the normal movement of the tongue during bottle or breast-feeding.     During bottle feeding there is more use of the buccinator and orbicularis oris muscles and less use of the masseter and mentalis muscles.

 

Okay…now some anatomy!

 Buccinator Muscle-

Its purpose is to pull back the angle of the mouth and to flatten the cheek area, which aids in holding the cheek to the teeth during chewing.  It aids in whistling and smiling and in neonates it is used to suckle.

 

Orbicularis Oris Muscle-

This muscle closes the mouth and puckers the lips when it contracts.

 

Masseter Muscle-

The masseter muscle is the primary chewing muscle, and covers the sides of the jaw just behind the cheek.

 

Mentalis Muscle-

The Mentalis is a paired central muscle of the lower lip, situated at the tip of the chin. It raises and pushes up the lower lip, causing wrinkling of the chin, as in doubt or displeasure. It is sometimes referred to as the “pouting muscle.”

 

Lori also stated that it was thought that milk was released because of a wave-like movement of the tongue.  However, more recent ultrasound studies revealed that is not true.  Milk flows due to negative pressure created when the back of the tongue and jaw drop during sucking.  If a baby is unable to breast feed…it is prefered that the Platex nurser is used for a number of reasons: shape, size, seal, and the option of using pressure on the bag to help the infant draw the liquid.

All of that being said…it is especially important to me to understand actually what the tongue is doing during eating…so I can then help…far in advance with speech production.

 

Okay…back to the tongue and what it is doing….

Now around three months of age…the hyoid bone…which was up higher in the throat prior to the three-month mark…is now in a different position… At 3 months the tongue base pulls back into the laryngeal cavity.  During feeding you will see less of your little one’s tongue in between her lips…she still is presenting with 50% retraction and 50% protrusion.

 

 

 

 

 

2.  Spoon feeding and cup drinking:

When spoon-feeding and cup drinking is introduced your little one will anticipate either the spoon or the cup.  This anticipation will promote 75% retraction of the tongue and 25% protrusion of the tongue…great because this is what we want…she will be developing the muscles of the tongue for the right amount of protrusion and retraction.  So…spoon feeding and open cup drinking will help with this skill.

 

3. Finger feeding with foods such as Cheerios:

When a little baby first starts finger feeding with cheerios…she is learning the very first level of tongue retraction…which is…as she is chewing on the cheerio..and her tongue is retracting to the 75% position and stabilized…her tongue will/should naturally go from midline to the right and midline to the left.  When she puts the cheerio in her mouth on the right side (for example)…the cheerio will stimulate the chew and the tongue will then move to the place of stimulation…great!  The tongue is lateralizing to either the right side or the left side from midline.

So during chewing…when the cheerio is in her mouth…she will retract her tongue to the 75% position and stabilize it their..Great again!!…and then lateralize to the right or left from midline…another important skill.  You can see why feeding is a prerequisite for speaking…everything your tongue is doing during eating…will help her with speech production.  Awesome!  With the 75% retraction and stability of the tongue the tongue will not only go from midline to the right or left…it will also then go across midline.

 

4.  Next….with 75% retraction and stability of the tongue…this will allow the tongue tip to elevate and depress.  Another important skill for speech production.  If you do not have 75% retraction with stability you will not see elevation and depression of the tongue….which is needed for speech production!!!

5.  Finally….the sides of the tongue become so strong that you will see side spread of the tongue.  That is the lateral margin spread of the tongue.  This movement is needed for the production of the following sounds: SH, CH, J and the vocalic R.

 

All of this information I believe is very important in understanding what exactly is happening to children that have Down Syndrome or children with low muscle tone…specific to how their tongue is functioning with regard to strength and mobility.  This is also important to the children we may see presenting with an interdental lisp, tongue thrust or the dreaded vocalic R.  Knowing all of this information…helps me to better understand the necessity of following the straw hierarchy….as I said…I only have posted about one of them…but will do the 7 others as soon as I can.

I hope this was helpful..it was for me!!!

 

 

Again..the information below does not have any EBP…however…I have found successful when bottle feeding.  It is important to note that nutrition is what is most important….so however you are best able to feed your baby…so that she gets the nutrition she needs is what is important for her.

 

 

HOW TO REDUCE TONGUE PROTRUSION AND IMPROVE TONGUE RETRACTION:

 

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…..in this position her chin is higher up than her ears.  We do not want that position…..be 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!

 

HOW TO TEACH STRAW DRINKING:

Honey Bear Straw Cup:

Thank you once again to Talk Tools for the information listed below on how to teach straw drinking:

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…..so 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.

 

Teaching straw drinking is an important step in children with Down Syndrome.  I start introducing the straw as young as four months old.

This post is going to describe technique number one for straw drinking out of the Honey Bear.  Please remember that this should be used in conjunction with the bottle or sippy cup….and that the Honey Bear can NOT be solely used until the child is able to receive adequate liquid nutrition through the Honey Bear.  When she has mastered drinking from the Honey Bear…then the sippy cup or bottle can be eliminated.

Important factors when using the Honey Bear:

Child should be in a stable posture.

Chair should encourage a 90 degree angle in the child’s pelvis, knees, ankles and chin.

Child’s hand should be midline.

Highly flavored thickened liquids are easier to control and give additional sensory information for taste and texture.

 

Technique Number One:

Fill the Honey Bear with a favorite, highly flavored, slightly thickened liquid.  Leave 1/2 inch of the straw exposed.  Support the child’s jaw.  Place the tip of the straw midline on the surface of the lower lip.  Assist with lip rounding as needed.   Squeeze a small amount of the liquid in the child’s mouth and remove the straw.  Support the jaw and wait for the swallow.  Assist with lip closure if needed.

Repeat this three times at the start of each liquid feed…then allow the child to drink the liquid how she typically does…from the bottle or sippy cup.  Practice one to three times a day.  As skills improve reduce the amount of assistance given to squeezing the liquid, and in the jaw and lips.  Increase the repetitions at the start of each liquid feed as the child can tolerate.

Once the child is able to draw four ounces of liquid independently through the Honey Bear.

If your child has significant tongue protrusion and cannot draw the liquid using the 1/2 inch straw length…use Honey Bear Technique number 2 ( I will post about this technique)

If your child is resistant or unable to drink using a 90 degree angle…and is relying on backward head tilt…use technique number three (I will post about this as well).

 

Technique Number 2:

Honey Bear Straw Drinking-Technique #2-This technique is used if the child has significant tongue protrusion when attempting Technique #1 and cannot draw liquid through the straw.

1. Pull the tip of the straw through the hole in the Honey Bear lid until a 1 inch length extends from the top of the lid opening.  Use the palm of your non-dominant hand to support the client’s jaw as you implement the following technique.

2. Place the 1 inch length of the straw on the surface of the child’s tongue at midline.  You may assist in lip rounding by squeezing her cheeks.

3. Squeeze a small amount of the liquid into the child’s mouth and remove the straw.  Continue to support the jaw and assist in lip closure if necessary.

4. Repeat this task three times at the beginning of each liquid-fed activity.  This should be done 1-3 times per day.  As skills improve reduce the amount of assistance.

5.Once the child is able to draw 2 ounces of liquid independently through the Honey Bear at the one inch length, reduce the exposed straw to 3/4 of an inch, and repeat the technique as described.  The shorter length of the straw requires the back of the tongue to work harder to draw the liquid through it, this encourages tongue retraction.

6.Once she can draw 2 ounces independently, reduce the exposed length to 1/2 and repeat the technique.

7. Once the child can draw four ounces of the liquid on her own at the 1/2 inch length (which is technique number 1)…introduce the talk tools straw drinking hierarchy.

Goals: jaw stability, lip rounding and tongue retraction

 

 

Technique Number 3:

 

 

 

This post is in reference to the third technique used when teaching Honey Bear Straw drinking. You can find the other two techniques under the link to the right of my home page: Honey Bear Straw Drinking in Children with Down Syndrome.

 

Honey Bear Straw Drinking-Technique #3:

You will be using this technique if your little one is resistant or unable to drink using a 90-degree angle in the jaw.  (needed: four lengths of Talk Tools Flexible Tubing for this exercise: 4″, 5″, 6″, & 8 “)

 

1. Start with the four inch length of flexible straw tubing.  Leave 1/2″ extending from the lid opening.  Use the palm of your non-dominant hand to support the child’s jaw as you follow the following:

~Place the tip of the straw on your child’s lower lip at midline. You may assist with lip rounding by squeezing gently on the cheeks to create a circular posture.  The 4″ length will allow the child to drink using a head tilt-back (this is okay).

~Squeeze a tiny amount in and remove the straw. Support the jaw and help with lip closure and wait for the swallow.

~ Repeat three times at the start of each liquid-fed activity. Then allow your little one to finish the rest of the liquid in the manner she is most successful.  Remember nutrition is important.  So as she is learning to drink from the straw be sure to only repeat this three times at the start of the feed…and allow her to finish the rest from the bottle or cup.  Be sure to do this one to three times per day.  As her skills improve you will be squeezing the bear less and giving less support to the jaw and lips (for closure).

~Once your little one can drink 2 ounces on her own from the 4″ tubing…replace with the 5″…and follow the technique above.  What has changed with the 5″ tubing?: The slightly longer straw will require your little one to hold the Honey Bear in a lower position in order for the liquid to enter the tubing…and this promotes the chin tuck.

~Once your little once can drink 2 ounces from the 5″ tubing…replace with the 6″ tubing…and repeat above technique.  Same as above…the slightly longer straw requires that the Honey Bear be held in a lower position.

~Once she can drink 2 ounces independently through the 6″….replace with the 8″…and follow the above technique.  The 8″ tubing requires that your little one holds the Honey Bear in an even lower position.

 

 

 

How to teach cup drinking in children with Down Syndrome

Thanks again Lori Overland for sharing your knowledge with me and for giving me permission to pass on to so many people.  Be sure to visit Lori’s site:http://www.alphabetsoupomtherapy.com/index.htm

And be sure to go to talk tools site for seminars, resources and great information.

 

 

 

 

Between six and eight months of age you can start teaching cup drinking to your little one.  Using the cut out nosey cups helps your little one in learning cup drinking skills.  It is important that you thicken up the formula…as a liquid is the most difficult consistency for a little one to manage.  So she will have a more difficult time managing this thin liquid from a cup then she does from a bottle…why…because when she is sucking out of the bottle..a smaller amount is drawn from the nipple…however…when drinking from an open cup….a larger amount will enter your little one’s mouth…and she would have a more difficult time in managing the thin liquid….and you do not want to risk aspiration!  So…in order to teach open cup drinking…and to be sure that your little one can manage the liquid…you can thicken up her formula using this simple recipe:

Formula

Rice Cereal

Cinnamon

By increasing the taste of the formula….by adding the cinnamon…you are also giving good sensory feedback (due to the increase in the flavor).

Another simple recipe:

Baby bananas

Apple sauce

Add either water or formula

Add cinnamon or nutmeg

Now…..you will have to address postural stability….so be sure that your little one is sitting upright….you can put her on your lap so that you can also help with lip closure:

~Place your middle finger under her jaw

~Pointer finger under her lower lip

~Give her one sip..take the cup away…help with lip closure with your two fingers.

~So it is one sip…help with lip closure and swallow.

 

Now….when you get her to drink five or six single swallows…this means she has taken one sip and then swallowed it…and she did this five to six times consecutively….AND she has lip closure and her tongue is retracting….you can now present two sips of the liquid with the one swallow.

When can you thin out the consistency-when your little one does not need support and she has lip closure and tongue retraction.

 

 

 

 

 

 HOW TO DEVELOP CHEWING SKILLS IN CHILDREN WITH DOWN SYNDROME

The information below was also taken from Lori Overland’s six hour seminar.  Thanks Lori for allowing me to share:

CHEWING HIERARCHY:

“The goal of this hierarchy is to teach a graded, lateral chew with tongue-dissociation and movement across midline. Use a thin bolus such as a veggie stick, thin pretzel or crunchy Cheeto. Move to the next level in the hierarchy when the child can independently demonstrate the skill at the level you are working on with a stable jaw and dissociated tongue movement.”~Lori Overland, MS, CCC, SLP-Developing Oral-Motor and Feeding Skills in the Down Syndrome Population


CHEWING HIERARCHY LEVEL ONE IN CHILDREN WITH DOWN SYNDROME:

 

Chewing Hierarchy Level 1 can only be addressed in feeding when the child has mastered this level in the pre-feeding exercises. So…if your little one does not have a munch-chew….and you are only seeing a suckle (many children with Down Syndrome do not move past the suckle)…..you need to go back to pre-feeding Chewing Hierarchy Level 1. This means instead of food you will be using various tools in order to facilitate the chew. You can use the chewy tubes.  The yellow ones are smaller and better for babies. So it is important to remember….do NOT practice Chewing Hierarchy Level 1 during feeding if you do not see a munch-chew. The goal of the chewing hierarchy is to teach all of the levels of chewing. However, with little ones…babies that are learning to chew…the hierarchy MUST be presented as a pre-feeding exercise at first…and then foods are introduced.

So….one last time…if your little one is still suckling and is not demonstrating the munch-chew….this is a pre-feeding Chewing Hierarchy level 1 exercise.

Okay…so once you are seeing the munch-chew….present a stick shaped bolus…. like a pretzel stick or a veggie stick perpendicular to the lateral molar ridge…have the child take three bites…be sure to do this on both sides of the mouth. That is the exercise three bites on both sides of the mouth. So: bite, bite, bite on the left….and bite, bite, bite on the right. Question: How much food should go in the child’s mouth?- As much as they can handle…small bites for the little ones of course.

Why is this so important….because hierarchy level 1 is not only teaching chewing…it is motor planning for the following: tongue retraction and the lateral chew. It is important to note right here…during your pre-feeding Chewing Hierarchy level 1…with the chewing tube…..once you see lingual retraction and the lateral chew on the chewy tube…and you see the munch-chew…NOT the suckle…you are ready to do Chewing Hierarchy level 1 with food.

Since you will be doing Chewing Hierarchy level 1 during feeding….what will you be doing during the pre-feeding exercises with your little one…YES!….Chewing Hierarchy level 2. My next post will be about chewing Hierarchy level 2…but wanted to end this post with the goals of level 2: teaches the motor planning for tongue tip pointing and tongue retraction.

A few extra tips….when you are doing the pre-feeding Chewing Hierarchy Level 1……you can also use the Z-vibe with the green head and the Ark Probe also at talk tools.

 

 

Chewing Hierarchy Level 2 in children with Down Syndrome

Chewing Hierarchy Level # 2 as a pre-feeding exercise:

If you are working on Chewing Hierarchy Level #2 as a pre-feeding exercise…this means during regular feeding your little one is chewing food at Chewing hierarchy level #1…while she is eating at level #1…during pre-feeding you work on level #2…with toothettes presented to the lateral incisor and then to the back molar… or you can use chewy tubes.  When using the toothettes…be sure to cut the wings off to make it easier to put inside your little one’s mouth.

So you want your little one to take two bites:

 

One bite at the lateral incisor

 

 

One  bite at the back molar

 

What are we motor planning for?  Tongue tip pointing and tongue retraction.

Be sure to alternate sides…whatever you do on one side you do on the other side…unless you see asymmetry.

Once you see that your little one is capable of biting at the lateral incisor and then at the back molar ridge….you are ready to present this level during feeding.

And when you are working on chewing hierarchy level #2 during feeding…you are working on chewing hierarchy level #3 during pre-feeding.

Not only are you teaching your little one these chewing skills…you are also motor planning for the skills indicated above.

 

 

Chewing Hierarchy Level Number 3 for children with Down Syndrome

 

Below you will find information regarding chewing hierarchy level three….remember you will do level #3 as a pre-feeding exercise while you are working on level #2 as a feeding exercise.  This means if you are working on level #3 as a pre-feeding exercise you are using chewy tubes not food…..because you are developing the muscle memory for chewing…and when your little one is ready….you will do this level during feeding…and addressing chewing hierarchy level #4 in your pre-feeding.

 

 

CHEWING HIERARCHY LEVEL #3

Present a stick shape bolus-like a veggie stick or a pretzel…I also like the Snikkidy Cheese Fries…they are the same shape as a veggie stick..and the same consistency…but are very cheesy…and give lots of good sensory information…they are in the chip aisle….I love them too!

What to do:

Present the food on the lateral incisor.  Be sure to provide support to your little one’s jaw to prevent jutting or sliding…if needed.  Encourage your little one to bite.  Quickly present the bolus to the opposite lateral incisor.  Alternate the side you start on as well.

What does this level work on?

~Tongue tip pointing

~Tongue lateralization across midline

I plan to post about level number four tomorrow…the five point bite…which addresses the rotary chew…tongue lateralization across midline.

 

 

 

 

How to teach chewing hierarchy level number four in children with Down Syndrome

 

 

Chewing Hierarchy Level Number 4

This is the five point bite.  So you will be presenting the stick shaped bolus (veggie stick or Snikiddy Cheese Fries) perpendicular to the lateral molar ridge.  Be sure to support your little one’s jaw if needed.  This is to prevent jutting or  sliding.  Now you will move the bolus around to the opposite molar ridge: there will be five bites in total: lateral molar ridge, lateral incisor, front central incisor, lateral incisor and finally the lateral molar ridge on the other side.  Be sure your little one takes small graded bites.

What are we addressing:  Encourages tongue lateralization across midline

 

 

 

Thanks Jen at http://talk-ds.org/ for letting me post this.  Jen is a great resource and has helped me so much in my journey as an SLP.  We just met via the web a few months ago…but I have already learned so much from her site.  Please read her blog post below and be sure to go to her site.

Motivating your child with Down syndrome to talk

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Children need motivation. Especially children with Down syndrome who have speech or language disorders. Internal motivation is difficult enough for those of us without language-learning difficulties. This is why support groups for dieters are so successful. How do we encourage or motivate a child with Down syndrome to talk more? How can we help them make  that connection:  I want you to talk + you just talked = more talking

Imagine you are a child with DS. You understand more than people think you do. You get frustrated because it is so difficult to let them know what, how, and why you are feeling a certain way. People are always correcting you – your parents, siblings, teachers and therapists. You are told “No” frequently. So you become resourceful. You use behavior – your body, voice, or facial expressions to get you message across. You prefer to play alone your way than to interact with those who don’t understand you. Are you really motivated to communicate more?

Waiting for your child to learn to talk can be torture. You think, “If only he would talk! Then he wouldn’t get so frustrated.” And you are frustrated (mixed with sad). The good news is there are three things you can do to help your child. These techniques are borrowed from my colleagues in psychology and set the foundation for positive interaction with your little one.

First, I want you to pick a routine or activity during the day when you spend 1:1 time with your child that is also enjoyable for them. Is it bath-time? Playing with cars? Going on a walk? Choose something you can do together. During this time you are going to focus on three key words: praise, paraphrase, and point out. In psychology they call this “the 3 P’s.”

  • Praise – Probably the most common thing parents do, but I want you to change it up a bit. Be very specific with your praise. This is also known as “labeled praise.” Point out the behaviors you like: “I like it when you use your words,” “Good job signing,” “Nice job showing me what you wanted!”
  • Paraphrase – This is when you reflect or repeat back statements. In language therapy we use this to affirm the child’s attempts to communicate with words. For instance: Your child is playing with a car and says, “Beep-beep!” You say, “Beep-beep!” and push the car. Your child says, “My pizza.” You state, “You do have pizza. Yum!”
  • *Point Out – This is when you state exactly what your child is doing. You are like a sports announcer giving play-by-play feedback. For example: “You are feeding your baby doll. You are putting the spoon on her lips. Now you are giving her a drink. You gave her the bottle!”

Use these three techniques during your routine with the most time spent on praising and paraphrasing. *Pointing out is helpful, but too much came be overload for the child with DS. Make sure you are giving him “equal air time” by waiting for responses during a period of silence. If you have a hard time being quiet after pointing out, count to 10 silently in your head. Children with DS typically respond when given increased time to listen and process what’s being said.

There are also things to avoid during this activity time. You won’t eliminate them from your life – just during the routine we talked about above.

  • Questions – American parents ask TONS of questions. All the time. Set a timer if you need to. Try 2 minutes, no questions, and work your way up to 10-15 minutes. You willfail at first, so don’t beat yourself up. Try again. It’s easier to think about switching out questions with “pointing out” than, “Don’t ask questions…don’t ask questions…”
  • Avoid commands – let the activity or routine flow on its own. Let your child lead and observe how they communicate with you. Do they use words or do they pull you by the hand, point, or gesture? Gently guide them back into the routine if they quickly lose interest – or see what they are moving on to – the activity the choose themselves may be more motivating to talk about.
  • Avoid negative talk – this include statements like “no,” “stop it,” “quit,” or “don’t do that.” Unless the child is doing something harmful to himself or others – let the mistake go
  • Avoid distractions – Turn off your phone for 10-15 minutes. Don’t check email or Facebook. Protect your time. It will be easier for both of you to focus.

Children with Down syndrome are usually motivated by social interaction. Using the 3 P’s will increase the quality of communication during your routines. Your child will notice the way you are positively interacting with him and his motivation to communicate with you will increase.

More resources on the 3 P’s and active listening:

How to use labeled praise 

Don’t be afraid to praise

What to do when you’re waiting

 

27 Responses to DOWN SYNDROME

  1. Mrs Adames says:

    I work with children with DS. Mom wants oral motor excercises to help her child TALK. I’m
    Not sure how to begin

  2. syeda says:

    hi km. writing again. hoping that you might be able to guide me. My 6 year old down syndrome son doesn’t chew yet. He only takes pureed mashed food (i.e. rice with soft overcooked vege or chicken, lentil soup, roti mashed with lentil). One time he actually started liking puffy rice which is crunchy (as you mentioned in your blog) but he was diagnosed with pooling issue in his feeding test). That’s why therapists asked us not give him that sort of thing. Now it has become of behavioral issue to offer him anything new. He also doesn’t like me eating in front of me, like your son he gags as well.

    Please advise what to do and where to start from. By the way, this is the first time I am reading your blog. I haven’t read any other articles of yours. So I might need some reference as well. Will look forward to hearing from you.

    Thanks
    Syeda

    • Kim says:

      Hi Syeda…since your son does not chew..you would need to start with the chewing hierarchy….level number one without food. This way you can help him to develop the muscle memory for chewing. I have posted regarding all four levels of the chew…so please start with number one..and as i said without food..you can use a toothette or the yellow chewy tube. Also…since he is only eating pureed foods…if you add additional flavor: IE: cinnamon…nutmeg..garlic powder…onion powder…sugar..honey..any spice or flavoring that will enhance the flavor of the foods he is eating..this will give his sensory neurons more information..which will then help the motor neurons for chewing. Keep in touch with me…and I will help the best that I can. Kim

  3. amy says:

    Hello! Thank you so much for your response. I am reading through straw drinking right now. We did the bunny straw and only cut it once. Long story why we haven’t moved past that, but I am going to begin that tomorrow.Now, your informations says we will cut this straw 5 times. If we are working on articulation, we are not ready for the “s” sound yet. My daughter does make an “s” sound and has many words. Can you please clarify this for me? When she drinks from a straw, the tip of her tongue rests just outside her lips. Her lips are very rounded.
    Thank you!

    • Kim says:

      Hi Amy…not only is the straw kit good for children with low muscle tone and DS..the kit can also be used to improve clarity of speech for the vocalic R and for production of the S sound (specific to the interdental lisp-or lateral lisp). It sounds like you are not using the straw for artic purposes. If that WAS the case..and your LO did in fact have an interdental lisp..it just means that you would not yet be ready to target the sound. When your LO drinks the goal is for her tongue to be retracted..inside of her mouth..with her lips rounded around the straw to draw the liquid up. Hope that makes sense. And yes please do go back to the straw kit..it is so very important. Best, Kim

      • amy says:

        I will be ordering the complete straw kit from talk tools! Thank you so much for this blog. You have no idea how much this has helped me. I will work on the tongue retraction and the bunny straw and get back to you with our progress. Thank you thank you thank you!!!!

        • Kim says:

          You are so welcome..post questions anytime…and if you need to get very specific and do not want to post on here…I can send you my email. Best, Kim

  4. amy says:

    Hi Kim! Happy Holidays to you as well! Yes, we did the honey bear. My daughter was born with a birtth defect that required 8 complex surgeries in year one. She also had a feeding tube for her first three months. We began seeing Lori Overland at that point but she is quite a distance from us. We recently switched to someone more local who Lori knows. Yes, we have done the chewing heirarchy. I think I need to go back and start over again. She began eating solid foods around the done year mark. By solids, I mean cheerios. It took about a year to get good toungue lateral movement. She will chew her food now but will suckle at the very end. She is 2 1/2. She talks and has well over 50 words but picks and chooses when she will use those to communicate her needs. I saw a lot of really good ideas on your post for this!!!
    She has reached a picky stage of eating. She used to do all fruits, some vegetables like sweet potatoes and potatoes. Never broccoli, never meat except an occasional piece of chicken nugget or bocca burger. She currently is eating a ton of yogurt and peanut butter crackers, pretzels, cheese crackers, rice cakes. I pack her smoothies full of greens to get her nutrition in.
    She can walk but chooses to crawl.
    I think that sums her up pretty well!

    • Kim says:

      HI amy…yes maybe go back to level one on the chewing hierarchy if you feel like she is suckling more on her food at the very end. Food preferences are quite common…you can read more about the sensory component on the Down Syndrome page…but to sum up quickly…kids will be hypersensitive to textures and hypo-sensitive to temperature and taste. Giving her foods with heightened flavor will help the sensory neurons get more information and then in returen will help the motor system for chewing. I see that she does prefer the hard crunchy foods…texture wise that does make sense to me…kids will often prefer the hard crunchy foods and then the pureed foods like yogurt that do not require chewing. HOwever, the in-between textures…are hard for them to tolerate: meats, cheeses…etc. I hope this was helpful…post with more questions..best, Kim

  5. amy says:

    Hi Kim! I love all of the work you have done here! I have a question about straw therapy. My daughter really uses her tongue to help suckle from a straw. We have tried the bunny straw but never got past cutting it once for a variety of reasons. Should I go back to that along with lateral tongue movement exercises to get that tongue retracted? Her tongue does not stick out very far but yes, it is out and yes it is being used to suckle. Thank you!

    • Kim says:

      Hi Amy….did you start with the honey bear…if not please start with that. I posted regarding the 3 levels of the honey bear. Continue with the pre-feeding exercises…especially the first level of the chew…chewing helps the tongue to retract. How old is she? What is she eating…and how well is she chewing…are you doing the chewing hierarchy? Happy Holidays!
      Kim

  6. Ashley says:

    Hey kim this is Ashley. I met last wednesday with at my home with my daughter. Im just following up to see which excercises i can start doing with my daughter.

    • Kim says:

      Hi Ashley…sorry for the late response….you can follow all of the exercises EXCEPT for the palatal massage. The toothettes can be ordered on Amazon…and are less than talk tools site. You do not have to follow the exercises just yet that require the Jigglers. Let me know how you do with them…and I will be seeing you at the meeting. Best, Kim

  7. Latricia says:

    Hi Kim,
    Here’s a video of us prating pre-feeding excercises with Lila. She’s getting better at munch munch! We do the exercises about 4 times a week before she eats solids. Thanks for your help!
    http://www.youtube.com/watch?v=fEX6Xod8UjQ&feature=youtube_gdata_player

    And here’s Lila eating pears 🙂

    • Kim says:

      Hi again Latricia…I am so proud of Lila and you!…great job with the pre-feeding exercises…a few things…first I would like to see you doing them 3 times a day if you can!….the best that you can though… Second..when doing the upper lip mobility exercises I find that if you use the toothettes…you can buy through talk tools…and Amazon too i think…the toothettes work even better. Be sure with the toothetttes that you start in the corner of the mouth and the work your way up to midline…with the toothettes you really can get under the lip better I think than with the Nuk brush. I also wanted to say that you should start on the chewing hierarchy exercises…starting off with level one….you can read on my blog how to start. Also have you started with an open cup..and the Honey Bear straw cup? So much to do….
      Finally..how would you feel about me posting your video on my FB pages…I am a member of many DS groups..I want more people to know that I can help via video…no worries if not. Thanks again for the video. I must close by saying how incredibly beautiful Lila is!!! Best, Kim…

    • Kim says:

      Oh my…I just visited your blog…how beautiful….I cried…thank you for sharing!
      I wanted to comment on spoon feeding…be sure the movements are 3 quick presentations…you want to be sure that she is using her upper lip to clear the spoon. On the final presentation it looks like you hold it in her mouth a little too long..this gives her a chance to suckle on it…that may be why you see her tongue protruding. Remember too…the upper lip mobility exercises will help her to get better at clearing the spoon. Hope this was helpful…and thank you once again for sharing Lila with me!…Can I also add your blog to my resources page? No worries if not. Best, Kim

      • Latricia says:

        Kim,
        Feel free to use the video and blog! I will definitely order the toothettes and ask our Nannies to start doing some of the exercises with Lila, too! She has just in the last week started to spit a little more of the food out, about 3 seconds after the last bite, any thoughts? Thanks so much! And do I need the chewy tube for hierarchy exercises number 1?
        Thanks,
        Latricia

  8. Latricia says:

    Hi Kim!
    My daughter is 4 months old and has DS. We just started feeding her rice cereal last night and used the side to side spoon technique. Here’s a video if you can check out and offer any tips! We are hoping to learn more about talk tools soon. We already use the liner bottles and feed her upright 🙂 Thanks for all the info you provide! http://www.youtube.com/watch?v=nt7QewZGEz8

    • Kim says:

      Hi Latricia…Thank you so much for sending me the video…it is very helpful in assessing Lila’s feeding skills. First off she is just beautiful! So sweet 🙂

      Positioning is very important. She should be sitting in the most upright 90 angle position as possible. You may need to support her sides and head with towels to get her into that position. If she has a PT…I usually ask the PTs to help me with that. The more stability she has in her CORE the more stability she will have in and around her oral cavity. Also it is important with regard to positioning that her feet are resting on something. If you put her in a high chair…and give her support with towels around her body and head..be sure that your high chair has a foot rest…some of them do…but the rest is too far from the feet…so they can not rest her feet. This is very uncomfortable. And makes it harder for her to concentrate on eating. You may need to put towels under her feet to help with that.
      Once you have the correct position..you can concentrate on spoon feeding. When you feed her….it is three quick presentations of the spoon. The maroon spoon offered through http://www.talktools.com are the best I think…I like the size of the spoon…and the bowl of the spoon is not too deep..this makes it easier to clear the spoon. So you present the spoon horizontally one way…then quickly the other…then quickly back to the first position. The goal is for Lila to use her upper lip to clear the spoon….this is a bit of a challenge…so be sure to be doing the upper lip mobility exercises so that her lip has the strength to clear the spoon. When I watched the video you did not do three quick presentations….and what was happening is that she was suckling on the food…and we do not want her to do this….Also you should can work on the pre-feeding chewing hierarchy level number one…done without food..with a chewy tube or toothette. This exercise works on lingual retraction…which is what we want to see. Finally..did you see my pre-feeding exercises…they are all very important…especially the palatal massage. Please feel free to take another video and send to me…i am thrilled to help. best, Kim

      • Latricia says:

        Thanks Kim!
        Where can I find the pre-feeding chewing hierarchy level number one described?

        • Kim says:

          Hi Latricia…you can find the pre-feeding chewing hierarchy level one to the right of my blog on the home page under categories. And the pre-feeding exercises on the Down Syndrome page…on the top of my home page. Keep me posted…and send more videos so I can assess. Best, Kim

          • Latricia says:

            Heres another video of Lila eating, this time sweet potatoes! http://www.youtube.com/watch?v=ecj4AlAfV8E thanks!

          • Kim says:

            Hi Latricia….much better this time…she still is suckling on the spoon…so be sure that the movements…the three presentations are quick…not giving her tongue a chance to suckle….the larger maroon spoons through talk tools work best I think…as you can put more on the spoon…so when you do the three presentations…you still have food on the spoon. You may need to given her jaw and upper lip some support too…you need an extra hand…lol..this way her lip is getting better closer on the spoon. Also positioning is very important…her feet resting on something…and as upright as possible. The more stability she has in her trunk the more stability she will have in her mouth. You also can begin the pre-feeding chewing exercises…working on level one…as a pre-feeding exercise…so not with food..with toothette or chewy tube. Are you doing all of the pre-feeding exercises. They are very important. Post with more questions…and videos..she is just BEAUTIFUL!!! best, Kim

  9. Kim says:

    Lila…I am going to post your comment as a POST…it will be easier for me to respond to all of your questions…and then more available for others to read…

  10. Lila says:

    I wish I had known of your website sooner! My daughter, Isabella was born with Down Syndrome and is now 4 years old. We live in a 3rd world country (Honduras), so as you can imagine, finding professional services for her therapies are limited although we have been blessed to have an organization in our city that offers them for free and we have taken her there since the age of 10 months for physical therapy, early intervention, and currently for speech therapy and nursery school (special eduacation).
    I had learned thru another blog that sippy cups were not recommended and threw them out to buy her cups with straws…we found and like the Toss n Go type, but since she chews on the straws, we now use disposable straws with them. I did notice however, after reading your post on FB that she tends to stick her tongue out under the straw sometimes, but she is improving in that area (she can and does pucker her lips). She also has a drooling problem as she usually has her mouth open and tends to forget to swallow, even when eating and especially if she is distracted. I was told by her speech therapist to try placing drops of lemon, strong coffee or other bitter or sour tasting things on her tongue to stimulate swallowing, but this makes her drool more and spit. How can I help her with this?
    From what I understand, speech therapy also involves some sort of oral exercises or massages which she did not receive; her speech therapies began at the age of 2 and moslty have consisted in perfecting fine and gross motor skills thru games, coloring, painting and other activities which I understand are necessary for speech development. She did not have problems with eating, tho I suspect sometimes she has trouble chewing completely. They also work with flashcards and games to identify and name objects, colors and shapes and she is currently learning numbers 1-10. She is able to say over 50 words although some not so clearly and she is starting to form 2-3 word sentences, but for the most part, she still needs her family to “translate” so others can understand.
    Our home is a bilingual home (Spanish/English; Spanish being the local language) since I am a US citizen living abroad and our other 2 children go to a bilingual school. My HUGE question is: Am I confusing her or holding back her speech development trying to teach her both languages at once as I did my other kids or should I let her learn one first and try the other later? Her speech therapist considers her high functioning and says to teach her both (one parent speaking Spanish, the other English), but her special ed teacher, who also considers her high functioning, is not so sure nor is her psycologist (who works at the same center). None have had experience with this I believe. I’ve spoken English to my children since birth, tho somewhat inconsistently since everyone else speaks Spanish and I tend to forget to speak English sometimes. I only let them watch TV, videos and movies in English for the most part and read to them in English. I usually repeat in English whatever I say in Spanish. I have done this with Isabella also since birth and, to me, she seems to understand both. She will point to her body parts, for example, when you name them in either language, but usually says them in English. If I give her a simple command such as “give me a kiss” in either language she understands both. I have noticed she learns to say things easier in English, but I think it may be because the words are shorter in English (apple vrs manzana). What do you think?

    • Kim says:

      Thank you so much for liking my blog….I will have more time tomorrow evening to respond to your question…but wanted you to know that I received it…and will get back to you…best, Kim

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