New Speech Device being tested in Europe

There's a new speech device being tested in Europe with children who have Down syndrome. It looks very cool and promising. It would make sense that this would work, because children with DS respond very well to PROMPT therapy. 

Speech Device Helps Children with Down Syndrome

A REVOLUTIONARY speech therapy technology aimed at helping children with Down’s syndrome is being rolled out to the Capital’s classrooms.

Experts at Queen Margaret University revealed teachers and learning assistants at schools across Edinburgh and the Lothians were using hi-tech techniques based on electropalatography (EPG) – where children learn to pronounce sounds with the help of visual patterns generated by a mouth palate containing dozens of electrodes.

QMU researchers have been developing EPG for 20 years but revealed they were now taking it into classrooms, with 20 pupils who have Down’s benefitting through 15-minute bursts of therapy.

They said the new approach marked a radical departure from conventional aural feedback methods, where subjects are asked to listen to sounds and repeat them, which are often less effective as children with Down’s usually respond better to visual stimuli.

Joyce Fegan, a teaching assistant at Prospect Bank Primary School, who is using EPG with 11-year-old Grace Hampson, said: “It has made a huge difference. We’ve noticed her speech has slowed down and it’s been a lot easier for
her when pronouncing sounds and words.”

Researchers explained that EPG uses a palate made for each child which contains 62 electrodes monitoring exactly where the tongue makes contact with the mouth during speech.

The signals are then fed into a device that converts them into a simple pattern on a 
computer screen showing tongue-to-mouth contact.

The therapist – also hooked up to the device through a palate – is then able to show the correct pattern to the child for each sound, enabling them to learn the pronunciation.

“It’s been very positive,” said Ms Fegan, who has been using EPG with Grace every day over the past three months.

“Grace knows exactly how to produce sounds because she’s seeing them on a screen and she really enjoys using the palate.

Ms Fegan revealed that another P7 pupil, Niamh Savage, was also benefitting from the trial, with nine-year-old Rimni Rudden Davey also set to get on board.

Results from classroom trials will be analysed by experts at QMU, who said EPG should “significantly improve” speech production among primary school pupils with Down’s.

Dr Sara Wood, QMU speech and language therapist, said: “By targeting younger children, we are hoping to correct speech problems before they become entrenched. We hope this work will help pave the way to a much brighter future for people with Down’s.”

‘The whole experience has given her more confidence’

• GRACE Hampson, 11, a primary seven pupil at Prospect Bank, has been taking part in EPG sessions for three months as part of the QMU trial.

School staff and family members said they have already noticed an improvement in her speech.

Mum Rosemary, 49, said: “I think EPG has made her think about the sounds she’s producing much more.

“The screen makes it easier to imagine the sounds and picture them, and I think the whole experience has just given her more confidence.”




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31 for 21: The Oral Motor Myths of Down Syndrome

Sara Rosenfeld-Johnson from Talk-Tools is one of the best speech therapists/oral placement therapists for individuals with Down syndrome. Reading her books and papers and using her techniques has proven to be very beneficial for O. In regards to the post about tongue surgery, I thought I would follow it up with one of the best pieces from Sara called, The Oral Motor Myths of Down Syndrome. This was also published in our book, Down Syndrome: What You CAN Do.


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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 which has allowed them to develop? How do we pursue prevention?

A quick review of some oral motor development basics. Children are born with two cranial soft spots. One on the top of the skull at midline and the other under the skull at the midline. Soft spots facilitate the birth process, allowing plates in the skull to overlap, easing the infant's downward progress. After birth, the plates return to original position, eventually joining between 12 and 18 months of age. When the plates meet at the top of the skull, they take the shape of the brain's contour, giving us a round-headed shape. In the Down's population, this closing of plates may not occur until 24 months of age.
The identical closing of plates occurs under the brain in the plates of the hard palate. Just as the brain lends shape to the top of the head, the tongue shapes the palate. During the closing of the palate, if the tongue is not resting habitually inside the mouth, there is nothing to inhibit plate movement toward midline. The result: myth #1, a high, narrow palatal vault.

Can this be prevented? Let's return to the infant at birth. What is not commonly known is that even children with severe low tone at birth, including Down Syndrome, are nose breathers. They maintain their tongues in their mouth and upon examination their tongues are not abnormally large. Orally, these children look pretty much like any other infant with the exception that they have a weak suckle. This critical observation draws us to the connection between feeding muscles and muscles of speech.
In quick order, a cascade of events unfolds for these babies with weak suckle. Many mothers tell me they genuinely wanted to breast feed their newborn but were unable because the child had a weak suckle and/or the mother did not produce sufficient milk. Absent a medical problem, the difficulty is often that the child's suckle was not strong enough to stimulate the mammary glands into producing adequate milk flow.

In this scenario mothers are traditionally encouraged by physicians to use a bottle. Bottle feeding is fine, when done therapeutically, but mothers should be given meaningful choices. Further, when bottle feeding is suggested for these infants, the hole in the nipple is often cross-cut or enlarged to make it easier for the infant to suckle. The child is held in the mother's bent elbow and the bottle is held on a diagonal, nipple down. Visualize this - the milk flows easily into the infant's mouth, but what stops the flow, allowing the child to swallow? Tongue protrusion; myth #2. Excessive tongue protrusion is a learned behavior that creates a physical manifestation.

Keep visualizing this infant with low tone/muscle strength. There is a sphincter muscle at the base of the Eustachian tube whose function is to allow air to enter the middle ear. If weak muscle tone reduces the effectiveness of this sphincter muscle, then in the described feeding position, milk is able to enter the middle ear. The result: chronic otitus media; a primary causative factor in conductive hearing loss; myth #3

Fluid build-up in the middle ear, and the resulting infection, circumfuses throughout mucous membranes of the respiratory system and frequently becomes the originator of chronic upper respiratory infections; myth #4. The nasal cavity becomes blocked, the child transfers from nose breathing to mouth breathing and we have myth #5. The jaw drops to accommodate the mouth breathing, encouraging a chronic open mouth posture; myth #6. Because the tongue is no longer maintained within the closed mouth, the palatal arches have nothing to stop their movement towards midline and we end up with a high, narrow palatal vault, making full circle back to myth #1. The child's tongue remains flaccid in the open mouth posture, at rest. Lack of a properly retracted tongue position is myth #7. This enlarged appearance of the tongue is therefore not genetically coded, but rather the result of a series of care-provider related responses to the very real problem of weak suckle.

Understanding this scenario provides insight into the characteristics seen in these children when speech and language therapists begin to work on correcting their multiple articulation disorders. Addressing the oral muscles/structure from birth offers a more effective, preventative therapy than the wait-and-see approach taken today. These physical features are not predetermined. Our therapeutic goal should be to normalize the 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 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.

Originally published in Published in ADVANCE Magazine August 4, 1997; Reprinted with permission from Sara Rosenfeld-Johnson.

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Spoon Feeding to Discourage Tongue Thrust

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.

I've posted about this on the blog years ago, back when we were doing this with O (when he was a baby), and it's also on our site, but I thought I'd post it up here again.

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.



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Speech Progress Yet Again!

Speech progress seems slow sometimes, but it does come, thankfully. It takes a lot of work. Continual work. Repetitious work. Muscle Work. Sound work. Reading work.

When I blogged about how O had finally learned to say "Mom" without the "B" sound, it was such a huge thing! It's been awhile since then though. O has continued to make progress in his speech. In fact, in the last couple months he has made significant gains in his speech. We aren't having to repeat what he says to him to make sure we're understanding him as often (that's huge!), which means he is able to communicate more effectively & clearly. But, he still lacks clarity of speech.

That tongue of his surely gets in the way a lot it seems! He puts a lot of "B" and "D" sounds at the beginning of words. But, he is getting better.

I've been focusing more on making him use the straws from TalkTools consistently. That has made a HUGE difference. As well as using various other horns which help build the muscles for tongue retraction. And we, of course, continue to work on his jaw by using the bite blocks. Both single bite blocks and double bite blocks.

This week we were working on reading (yes, his reading is coming along really well too, praise the Lord). We got to the flash cards "Me" and "My." O has never been able to say either of those words correctly. It's always been "Dee."

Well, the other day, I did what I always do and broke the word down .... "mmmmmm-eeeeeeee." He can say it broken down, but putting it together and saying it normally doesn't work.....that is, most of the time. But, to my surprise and excitement, he said "Me"....with the "M" sound! And then he went on to saying "My" with the "M" sound.

That's music to my ears :)! Praise the Lord.



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The Importance of Straw Drinking

I recently received an email from one of my followers who is also a fellow blogger, Gretchen Mather (Julian's Journey), and she was wondering why straws should be cut for kids with Down syndrome.

Since I knew I had put a post up sometime ago in regards to cutting straws, I went back to read it and see if it covered the question, and it did not. It's an important thing to note and remember for kids with Down syndrome, so I thought it deserved it's own post.

When it comes to using straws, they can be very beneficial. But, if they are not used correctly, they can cause more harm than good. Part of the TalkTools oral motor program is to use their straw hierarchy. We've slacked from following it strictly, but it works very well.

Now you might ask "what does drinking from a straw have to do with oral motor therapy?"

Well, there's a lot to it.

A child can learn to drink from a straw from an early age. We taught O how to drink from a straw around 13 months old (because that happened to be when we found out about it) with the Honey Bear cup from TalkTools. It's very easy to to teach a baby how to drink out of the Honey Bear because you can squeeze it and the liquid will go up the straw into the child's mouth.

For a child to learn how to drink out of a straw, it'll greatly encourage tongue retraction and discourage tongue protrusion. But,  most of the time, when the child learns to drink from the straw initially, they will drink with their tongue sticking out and therefore be sucking with their tongue, not their lips. This does the exact opposite of what you want the straw drinking to do. This encourages tongue protrusion and completely prohibits tongue retraction.

Therefore, you have to start out with the first straw from TalkTools and slowly cut it down to where there is just 1/4"-1/2" of the straw for the child to suck on. The first few straws also have a tongue block so that the child's tongue won't be able to stick out. After the child gets accustomed to drinking out of a short straw with straw #1, you can move onto straw #2. Straw #2 uses a lip block as well. You move on as the child progresses with each straw.

Doing this straw hierarchy, or just implementing it at home by cutting straws short, putting lip blocks on the straw or reminding the child to suck out of a straw with their tongue in, will make it so that the child's tongue does not hang out of their mouth. And it will also make it so that the child's speech will improve, because their tongue will be stronger and not in the way as much.

We remind O to suck with his tongue in his mouth, since it can be a habit sometimes to have his tongue out when sucking out of the straw. But, most of the time he does it well and as he is just relaxed, most of the time his tongue stays in his mouth. The only times it does not is when he's very concentrated on doing something ;).

So, I hope this explains some how important straw drinking is.

Why, Oh Why?

Last week, a mother of a boy with Down syndrome called since she had seen our website. She had a lot of questions, because she said she needed help and wanted to learn more to help her son.

I spoke with her for around 20-30 minutes telling her a lot about TNI, oral motor therapy, autism related stuff, etc.

As I spoke with her, especially when it came to nutritional intervention, she said "Why have I never been told about this in the 10 years my son has been born?" I told her that we weren't told about it either. We had to research so much before we even ran across a hint about nutritional intervention. And with the countless hours we spent researching, it took us 8 months to find out about it.

When we did find out about Nutrivene, our curiosity about it was met with a lot of negativity on some online forums. It was hidden like a needle in a haystack. Why?

Oral motor therapy is also hidden quite well from many people. This mom who I spoke with, who has a 10 year old son with very limited speech, and who is even receiving speech therapy, had never heard of oral motor therapy. Why?

These two very basic interventions are so hard to find information about in the general literature regarding Down syndrome. In fact, most of the time, as the vast majority of parents would admit, they weren't informed about this in the literature they received when their child was diagnosed with DS. Why?

Targeted Nutritional Intervention is such a simple concept and something that has been researched and proven time and again for 60+ years. This was even used by the doctor who discovered what caused Down syndrome, Dr. Jerome Lejeune. He used nutritional intervention in people with Down syndrome with good success. Why is this not shown everywhere? Why is all the other research which shows how well nutritional intervention works not made well aware to everyone?

Some may say, "If nutritional intervention really worked, everyone would be using it." You know what, that's not the case. Nutritional intervention really does work. There are thousands of people using it with good success. But it still is very much kept on the down-low with the national DS associations, lots of doctors, social services, regional centers, etc. In fact, some of the national DS associations have articles written to say that nutritional intervention doesn't work. Why is that?

The same goes with oral motor/placement therapy. It works so incredibly well with a lot of people. But, it's not the first thing offered to a child with weak muscle tone in the mouth. Again, I ask, why?

There are a lot of questions and not many answers. It makes absolutely no sense to me that something so simple would be hushed by so many. I have a lot of suspicions as to why these things, particularly the nutritional intervention, is kept hidden. But, we don't know for sure.

I do know one thing. Dr Turkel, one of the first doctors who used nutritional intervention in DS, was banned from selling his vitamin protocol anywhere outside of Michigan from the FDA. Dr. Turkel experienced so much hassle from the FDA because of his protocol. I'll try to share some of the info from his book on here at some point. It's very interesting, but it really makes you wonder why there was such an issue? It's simply nutritional supplements.

So, this post will end with no answers, but a lot of questions.

Lord willing, I will continue to share about TNI & oral motor therapy with families, because I have seen the immense benefits they have. I know they work.

Does OMT ever NOT work?

When I put the post up from Andi Durkin in regards to her son's oral motor development achievement, I received a comment on that post,

OY...sometimes reading posts like this really bother me. I've been doing OM therapy on Olivia since she was five months old. I wanted to be as proactive as possible so I started early. Unfortunately breast feeding wasn't an option since she had acid reflux. I learned the proper way to have her take a bottle. I read James McDonald's book too and parrot back her sounds and would add one (I still do) - it hasn't made a whit of difference she still doesn't babble! She did do some good back and forth raspberries though. I've given her curcumin - and still no babbling. We started Beckman Oral Motor therapy when she was five months old - BUT she never really babbled. AND she doesn't make sounds properly at all. She most likely has apraxia having lost a few sounds. About four months ago I started Talk Tools therapy, so I'm cautiously optimistic.

It IS totally possible for a child with Down to have minimal oral motor issues despite what the parent does. So while all this is great there ARE NO GUARANTEES - the child is who the child is. This is the part that is so frustrating! A parent can do everything proactive and still the child can be non-verbal.

I wanted to comment on Csunshinegirl's comment. It is absolutely true that there are some children who will have additional challenges that just oral motor therapy won't address. I would never say that Oral Motor (Placement) Therapy will not work for a child. But, there may be situations where a lot more than OMT/OPT is needed. And a child could have good muscle tone in the mouth, yet still have speech issues.

Apraxia is one of those examples. While I wholeheartedly believe that O would be talking much, much better had we been able to start OMT at a very young age, I do know that he does seem to have an extra challenge. And that appears to be Apraxia of speech. I've discussed Apraxia a few times, but one main post on it can be seen here. OMT will help facilitate speech with Apraxia, but it may be slower going.

Other children may have other challenges as well: Inadequate nutrition & health. If their body is not functioning at it's best state, that will slow down their development. Surgeries & complicated health issues. If a child spends most of their life in and out of the hospital with surgeries or various health issues, this can also slow doe the speech process. Yes, you can work on OMT with your child through all that, but it isn't necessarily going to happen like it should because of medical procedures.

Then there are other kids who may have dual diagnoses of a whole slew of things: Autism, vaccine damage, hearing impairment, etc. That will also all slow down the speech production even if OMT is being used.

That's one thing which is also extremely important in proper speech production: good hearing. If the child has a hearing impairment or fluid in their ears, that will all hinder proper speech.

If Supplements Don't Increase IQ...

There was a question posed last week by a mother of a toddler with DS on one of the email groups I am on. The topic of low IQ's came up and she asked why would someone (including herself) spend all this money & time on supplements and early intervention if it doesn't raise the IQ levels.

The question intrigued me, because I have never thought of it. And I thought I would bring the topic up on the blog here.

We give all the supplements to O & do so much with him as far as therapy goes, not to necessarily achieve a high IQ. But, to give him the best possible chance at being healthy & thriving. 

That is proven in the lives of those who have children with DS and also in research studies.

Early intervention helps children with Down syndrome achieve key milestones in an earlier time frame. It helps stimulate their brain, helps strengthen their muscles & improves their tone.

Targeted Nutritional Intervention helps support proper brain function & overall health. It helps reduce certain metabolic levels which are in excess due to the third 21st chromosome. It helps increase levels of certain nutrients which are diminished because of the extra chromosome. It helps their immune system. It helps their tone. And I could go on and on with what all it can help!

With all that, never once has an IQ number come to my mind. The reason why we do what we do with O in regards to TNI & early intervention has nothing to do with increasing his IQ numbers. Honestly, I could care less what his IQ numbers are. I know that he is healthy, thriving and smart. That’s what matters. Not what any test might show.

Academic tests at his speech therapist have tested him a good 6 months to 1 year above his age. And that’s all by God’s kindness & mercy. Even if he were to test BEHIND (which he does in some areas), it wouldn’t be a big deal. He’s a blessing no matter what his IQ is.

The goal with giving supplements is what it does in the long run. It may help decrease O's chance of getting Alzheimer's or any of the other diseases that can come about because of the extra chromosome. As I said in this post, we have to look at it as a marathon, not a sprint.

Not in the long run of achieving the highest IQ on some academic test. No one needs a high IQ level from some test to say whether they are smart, or whether they are capable of understanding & doing well.

My little brother does understand. He is a smart little boy. He is thriving. He has excelled in his motor skills. And he's never had an IQ test done.

Oral Motor Development Started Young!

Andi Durkin, who is a mother on the Einstein-Syndrome list wrote to the list a few days ago with an amazing progress report on her little boy who has DS. He's just under 1 year old and is doing amazing in the oral motor area & his speech. Andi has worked hard & researched a lot on what she can do for him.

Sara Rosenfeld-Johnson (from TalkTools) says in one of her DVD's that if a child is doing OM therapy and the TalkTools program from a very young age (just a few months old), "normal" speech can be achieved. I think Andi's son is a great example of that with the progress that he has made so far. I'll just paste what Andi wrote below, since she outlines what they have done and how it has helped.

My husband, Kenny & I took Jett (11 months) to his first speech evaluation with Renee Hill of Talk Tools on Wednesday (through a scholarship from http://www.dsfflorida.org/). She was amazed! She said that she had to evaluate him using the typical scale, not the one for children with DS. She said he was on par and above the typical child. He has no tongue protrusion, great lip closure, strong jaw muscles, etc. He is on his way to clear speech! She said it was the easiest evaluation she'd ever done and had the least amount of suggestions.

A brief history of Jett's language success:

-He's been "babbling paragraphs" for many months. See/hear Jett at 3 months: http://durkinworks.blogspot.com/2010/06/jett-babbling-paragraphs.html.
-Randomly said clear words off and on starting with "Daddy" at six months. (okay, alright, go' boy, oh boy, hey)
-He said his first word of intention at 8 months old: "Water"
-Jett said his first two-word sentence on Sunday: "Poopy good-bye!" (I'll spare you the details!)

This progress didn't happen by accident, of course.

First, breast feeding helped to build his jaw muscles and help with tongue thrust, among many other things. (It was so difficult for the first month or so but he finally got the hang of it!)

Second, we've used James D. MacDonald's (jamesdmacdonald.org) communication methods since he was born.  You can see my stepson, Alex, mirroring Jett when he was 3 months old here: http://durkinworks.blogspot.com/2010/06/jett-milestone-day-talking-jett.html (My husband wrote that he started talking that day--but that wasn't the first day.)

Third, I read the article: The Oral-Motor Myths of Down Syndrome By Sara Rosenfeld-Johnson, M.S.,CCC/SLP (founder of Talk Tools) when Jett was 3 months old and followed all her advice. You can find the article in Qadoshyah Fish's book, Down Syndrome, What You CAN Do.  ( http://stores.lulu.com/gotdownsyndrome )

Fourth, Kay Ness gave an eye-opening/life changing speech to our DS group that guided me in many ways including emphasizing the importance of keeping our children's nasal and ear canals clear in order to develop proper speech. (http://senc.us/Down_Syndrome.html) Which eventually led to cranial sacral work, AIR tea and Dr. Block's methods to open his nasal passages & ear canal.

Fifth, through following Kay's ND program since 8 months, Jett has been developing his oral sensory skills (mesh feeding bag, massages, etc.) and increasing his vocabulary (flash cards, songs, etc.).

Sixth, Qadoshyah's blog entry about how to feed our children correctly helped prevent bad habits and showed how to use feeding as oral motor therapy: http://www.gotdownsyndrome.net/spoonfeeding.html

So, to Camille Gardiner (friend & DSFF), Kay Ness, Sara Rosenfeld-Johnson, Qadoshyah Fish, James D. MacDonald, Dr. Loi (TCM), Dr. Block, Vicki Booher (cranial sacral), Dr. Franz, and Kristin L. Worishcheck, the lactation specialist, who cheered me on, my mother and Kenny, Alex & Kathy Durkin....

  THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU!!!!

You can see more pictures/entries of Jett at http://durkinworks.blogspot.com/search/label/The%20Chronicles%20of%20Jett

I'm thankful the book, blog & website were all able to help Andi & Jett as well :).

Strengthening the Lips

While I talk a lot about strengthening the jaw when it comes to helping speech, working on the tongue & lips is also important. If you work on the jaw, the tongue & lips will improve. But, they still may need some extra nudging.

This is one exercise that we do regularly with O. It can be pretty hard to do and there are multiple levels of it.

Take a popsicle stick or a tongue depressor. Tongue depressors can be easier than popsicle sticks, as they are a bit wider. A lot of therapy supply stores sell tongue depressors.

We happen to use grape flavored ones, as that is the kind we got from one of the first ST's we had.

Place the tongue depressor in between the child's lips and have them hold it there. Make sure the child's lips are on it all the way. It takes a bit of concentrating sometimes to get O to have his lips fully on it & holding it.

There we go, this is a much better hold!

You can either just have the child hold the stick in between their lips. Or, you can step it up a notch and lightly pull on the stick to give some resistance. You can also tape a penny on each end of the stick to add some extra weight, which therefore makes a more interesting dynamic for the child to hold it in between his lips.

This will all help greatly with keeping the lips shut, help with tongue retraction & to also help decrease any drooling problems the child may have.

Apraxia Issues

Well, I haven't kept this blog updated as often as I'd like, but so be it....life gets busy sometimes :).

On the ES listserv, we've been discussing Apraxia in DS. How it's so common and very often times misdiagnosed. I thought I would put up an email I wrote in reply to one of the mom's with the symptoms of Apraxia that O has. If anyone has any questions regarding Apraxia, feel free to ask and I'll do my best to answer.

I'll add a short definition of Apraxia from Libby Kumin's article, 

"Although many children with Down syndrome show characteristics of DAS, it is a term that has not been used to describe the speech difficulties experienced by children with Down syndrome. DAS describes difficulty in voluntarily programming, combining, organizing, sequencing and producing consonant vowel combinations. DAS is a descriptive label used when a child's speech difficulty is due to planning the motor movements and sequences of sounds for speech."

Libby Kumin's article on Apraxia in DS is very helpful and easy to read: http://www.riverbendds.org/index.htm?page=apraxia.html. I'll quote some of the symptoms she has listed and explain where O fits in that ....

"# Struggling or groping when speaking or trying to speak. He seems to be working hard to talk, but the correct sounds are not coming out."

---O: This is true for probably about 50% of what O says. He talks a mile a minute with us all and says so much. But, most of the time the words are not said how they truly are supposed to be pronounced or said. There are a handful of words that he can say clearly with NO problems at all, but not every word is like that.

"# Inconsistency in sound and speech production. One time, he can say a sound or a word clearly, but at other times he has great difficulty with the same sound or word."

----O: This is very true for him also, but again not 100% of the time. Like when he first started saying one of our friend's names - Teresa - he could say it perfect with the T sound and all. Now, though, her name has morphed into "Hada." And that's what he says all the time for her.

"# Difficulty combining and sequencing phonemes. He may be able to imitate or pro-duce individual sounds, but when he tries to combine them into words, he has difficulty, especially as the word gets longer or more complex. He can say "ham," but when he says "hamburger," it may come out as "hangurber." "Banana" may be "nabana." Sounds and syllables are frequently reversed. This reversal is known as metathesis."

---O: This is the classic signs of Apraxia that O has the most of. There are so many sounds he can say individually correct. Or, even words said correctly when they are by themselves. But, combining them with everyday talk is somethin' else that only comes by repetition!

"Waking Up" The Oral Muscles

For some kids, "waking up" the muscles is very beneficial, especially before doing more therapy. With some children it may be rubbing various textures on their skin, some may be massage and others may be vibration.

To help stimulate O's oral muscles before we do speech therapy, we use the Z-Vibe from TalkTools. You can just use your fingers, but since we have the Z-Vibe, that's what we use.

What we do is basically a quick facial massage to help get those muscles ready for some therapy :).

Using either a Z-Vibe or your fingers, press gently and move in small circles from the TMJ (see below) and down to the corners of the mouth. Go a long the bottom of the jaw (see diagram below) and also along the upper part of the cheek. Both to the corners of the mouth. Go around the mouth/lips, doing small circular motions. Then on the lips. With some kids, you may go "inside" the mouth on the inside of he cheeks, but we don't do that.

This is where you want to start the massage.

I drew on this picture the pattern that you want to do with the massage. Starting at each side of the TMJ and working toward midline with both top & bottom.

This will help "wake up" those muscles and also help firm & strengthen them.

I received a comment with a request for a recipe for homemade ranch dressing. Yes, we do have a recipe for it (gluten free, of course!) and I will try to post the recipe soon!

31 for 21: Therapy At Home

Thanks to all the advances in research with Down syndrome and the mindset change from the early 1900's, children with Down syndrome have so much potential and so many opportunities nowadays.

At times I think we can take it for granted all the opportunities children with DS are given when it comes to physical therapy, occupational therapy, speech therapy, oral motor therapy, feeding therapy, nutritional therapy and so much more. A decade ago, families who had children with DS didn't have all this information and knowledge.

So, the norm now when a family has a child with Down syndrome is to get the child enrolled in some kind of therapy program, be it a neurodevelopmental program, an early intervention program or just private physical therapy, occupational therapy, speech therapy, etc. This is all so wonderful, because most people who have a child with DS need this kind of help. It can be a daunting task to try to figure out how you can best help your child reach milestones.

And so every family learns the abbreviations PT, ST, OT.....and sometimes OMT or OPT ;). And the other abbreviations ND or NACD.

Every family will do the therapy work differently, since there are so many options, like I mentioned above.

For our family, that meant buying books on PT, ST, OT & OMT. Osiyyah never saw a professional physical therapist, or occupational therapist and I don't regret that one bit ;). He never even saw a professional speech therapist until he was 4 years old! And even now, we only see his ST once a month just to get certain ideas from her that I can't learn myself (specifically the PROMPT commands).

With Physical Therapy we bought Patricia Winders book, Gross Motor Skills in Children with Down Syndrome. 

My mom and I both read the book and followed it pretty closely. We'd read it and re-read it to see what therapy items we'd need or what we should be doing with Osiyyah at a certain age or stage. We built balance bars & bought therapy balls (to help build ab support). We sat him on edges of things and held his trunk to strengthen his core & help him learn to sit. We bought the Bumbo seat & the Boppy pillow, both to help with sitting (and both were SO helpful!). We bought a Jumperoo & a walker to help his leg strength. I feel like I'm forgetting some things, so if I remember them, I'll add them.

And Osiyyah did wonderful. He never needed a "professional PT." He learned to sit at 9 months old. He pulled to stand at 13 months old. He crawled for several months before walking and he walked at 17 months old. I will say his crawl was never the "four-point crawl", but he did it his own way and it didn't hinder anything. He can crawl on all four points now :). It would've certainly inhibited him had we forced him to learn to crawl on all four points.

For Occupational Therapy we bought Maryanne Bruni's book, Fine Motor Skills for Children with Down Syndrome.

We did the same with this book and bought Osiyyah all kinds of "toys" for therapy. Puzzles. Knob Puzzles. Stacking rings. Blocks. And so much more! He did wonderful on all of it! And he never saw a "professional OT" either ;).

For speech, I think I've said quite a few times what we use. In case you haven't seen it, this post & this post are two good summary posts.

We haven't really done an ND program, but I think they can be very beneficial.

Now, all this to say, that if the parent or family is well educated, therapy can all be done at home and the child won't suffer or lack anything. There's nothing I regret as far as us not seeing any "professional" therapists. Osiyyah has thrived with us (as in his family) being his therapists. We have such a large family and he gets so much stimulation, therapy and interaction with all of us.

We talked to someone at a regional center shortly after Osiyyah was born and they told us that it sounds like he'll be fine with our family, if we need any help, just give them a call. And we haven't really needed much help. At times, the research and what we read can be overwhelming and it can make one feel unsure as to where to start, but the more research that is done and understanding that comes, it all falls into place. I'm so thankful God has given us the opportunity to be Osiyyah's therapists. It has helped him tremendously.

I know we may not be the norm, but I wanted to do this post to show that therapy can successfully be done at home without much of any help from professionals. I know not every family has a kid (myself!) 16 years older than their kiddo with DS to do all the therapy with, but our family happens to have that ;).

Apraxia & Motor Planning Difficulties

I've been corresponding with a mom (His Steph, if you are reading this ;)) about her son's speech delays and concerns about Apraxia. The first email I wrote her was quite lengthy, since I covered a lot of subjects and I figured this may be of help to some others. So, with a bit of change to the email, I've put it here.

Starting with our background and where Osiyyah is at: Osiyyah can say quite a few words, and quite a few variations of words. A lot of people cannot understand everything he says, but he has a handful of words where people outside of our family can clearly understand him (like his name, Mom, Me, Yeah, and a few more).

Osiyyah has a hard time getting the final consonant sound on at the end of words. Like he can say “Bum” (as in a joking "You're a Bum!" type of way), but he can never get that “m” sound on at the end. He will miss sounds (consonant or vowel) in the middle or beginning of a word at times. But, mostly it’s at the end.

I do A LOT of oral motor therapy with Osiyyah and have since he was pretty little. Although I wish I knew what I know now when he was a baby, since I am convinced his speech would be MUCH clearer now. He is able to blow horns, bubbles, candles and just about anything. But, we didn’t get him to be able to do all that without a lot of work.

For the longest time, he would be able to blow a horn, but when it came to bubbles, candles or anything . . . blowing without something in his mouth, he just couldn’t do it at all. It took MONTHS of work and now he’s able to do it with no problem. But, there is still work that we need to deal with on his blowing/breath length (which I’ll mention later).

Another area that Osiyyah has had trouble with is actually putting the sound into a word. Like he can say the “L” sound isolated, but when combining it with words, it’s VERY difficult (and with some words impossible) for him to do. In his every day speech, he doesn’t say that sound. It’s only when I have him sitting down and we’re actually concentrating on saying the sound in a word or words. He’s getting better, but I know from working with past sounds, that it will take months.

For years he called his mom “ba”, even though he could say “mmm” and “aaaahhh.” Putting the two sounds together just didn’t work. We worked with him for MONTHS, saying “mmmmaaahhh.” He’d say “mmmmbbbaahh.” It was so frustrating and took tons of patience. Now he can say Mom, mama, etc. But, there’s still a word that he WON’T drop the “ba” sound on and it’ll take a few more months to get him to say “Molly” (one of our puppy’s names) instead of “Bolly.” He did say "Molly" once, but instantly went back to calling "Bolly" . . . sigh . . .

We use some signing with Osiyyah, but we don’t use that much. Because Osiyyah tends to not say the word or even try to say the word when he knows the sign for it. And since we communicate just fine typically without the sign, we haven’t pressed learning it. But, that’s not to say we still don’t use sign, cued speech or PROMPT with him. We still use it all when we are working on how to say a sound or word. And it works very well. It’s the only way he’s been able to learn how to say some sounds and words because he is VERY visually oriented. Now, that's not to say using sign language will hinder other children, since I know there are lot of kids who are greatly helped by being able to fluently use sign language. Just for us, it's not the best choice to use it in every circumstance.

I think that’s a pretty good description of Osiyyah’s speech situation. I’ve gone back and forth on him having Apraxia for over a year. I must say many of his symptoms of Apraxia stopped or at least greatly diminished when we started giving him Longvida Curcumin back in May ’09. His speech JUMPED so, so much since starting that. But, he still struggles with it.

Some of the symptoms of Apraxia which still concern me with Osiyyah are his lack of consonant sounds/ending word sounds, his lack of being able to say a sound with a word, and how he can only say certain sounds in certain words, but not in combination with other words (like how he can say Mom, but not Molly). But, there is still so much that doesn’t make him out right Apraxic, so what he at least has, is Motor Planning difficulties.

I think this is why it can be really hard to decipher or diagnosis Apraxia in children with DS. Due to their lack of muscle tone that can create speech delays and then also Motor Planning problems which can greatly represent Apraxia.

With Osiyyah and also a lot of kids with DS, visual cues and repetition help them tremendously. For kids with Apraxia that is the way to treat it – lots of repetition with sounds and then working up to sounds with word combinations and also visual cues, like PROMPT.

We use PROMPT, Cued Speech, some sign language, written words and oral motor therapy all in combination in Osiyyah’s speech therapy. I can’t stress enough how important PROMPT has been in helping Osiyyah learn how to say (and properly say) certain sounds. Even though he doesn’t technically have Apraxia, PROMPT has greatly helped him.

And even if we were to find out sometime that he truly does have Apraxia and not just Motor Planning problems, everything we are doing is what would be done in a child with Apraxia, so we have our bases covered. We wouldn’t have missed out on anything as far as therapy goes.

The written words I mentioned . . . I write out on a piece of paper a word we are working on, then show Osiyyah and break down each letter and sound combination for him to say and then say the word in full. This has helped TONS. If he sees the words & sounds, it helps him tremendously say it all correctly.

On blowing again . . . It took us a long time to get him to blow without something in his mouth. Months of practice and repetition (repetition is what makes perfect here, haha!). But, part of his speech problem is also due to lack of being able to keep a real long breath. His breathes are typically fairly short, so if you talk on short breathes, you’re not going to talk that great. We are working on that with blowing steady, prolonged blows with the bubbles and some horns. We’re making progress, slowly but surely.

If a child can’t blow bubbles or horns, or some other certain jaw/mouth muscles strengths, that is where I would start first . . . at the oral muscles. Trying to get a child to say certain sounds and words without proper jaw strength and correct oral muscles, you're not going to get very far.

About a year ago, we realized how incredibly weak Osiyyah’s jaw was (after I read Talk Tools Jaw book – best speech read ever!). He could not even bite on a bite block. It was like he was clueless that it was in his mouth. Ever since we have started working on that we have seen lots of improvement. He can know hold a bite block in his mouth for 20 seconds per side 6-8 times per side. It’s amazing.

If there is no strength in the jaw, teaching the tongue and lips to do stuff isn’t going to work very well and won’t get you very far. If you teach the jaw first and then subsequently start working on the lips and tongue, it will all start to fall into place. The jaw is the foundation of the oral motor area and it is soooo essential. Many people don’t realize how important it is, yet it is so fundamental.

Now, I know I've said some of this on my blog already, but I thought it would be good to have this all in one concise, space. And of course, you can always look back through the blog to see more detailed speech therapy posts!

TalkTools -Sara Rosenfeld-Johnson- Video Online

Sara Rosenfeld-Johnson (TalkTools) has a blog. She recently gave a presentation at ASHA on the benefits of and the "why" behind Oral Placement Therapy (previously known as Oral Motor Therapy). It's taken her a bit of time to get the video of the presentation she did up online and this is why:

Sara said,

I didn't feel it was appropriate to film while at ASHA so I had to give the presentation to a camera instead of an audience, never my favorite. So, now you know why the long delay, but you also now have access to the video!

So, the original presentation isn't filmed, but she re-did if for everyone to have access to and to see! Thanks Sara :)!

The video and the handouts that go with it can be seen at www.talktoolsvideos.com. This should be very informative and a great resource for parents, therapists and professionals alike! Feel free to pass this on to anyone you feel would be interested.