0.0967741935

I think that 10 decimal points is enough. I changed my fraction routine into decimals in honor of my #1 niece, Elizabeth. She's a freshman at MIT, and she's a math whiz. And she has a great name. She's also the only person who took a guess at my literary mystery. And she got it right. Ms. Frizzle!

Now that has absolutely nothing to do with Down syndrome. But, at least I know one or two readers who will be pleased with the shout out.

Here comes the relevant part of the post:

The past two Saturdays I've been facilitating a Talktools DVD seminar. I know many of you have been hoping to find an OT or an SLP who has training in oral placement therapy. Well, this is one way to make it happen: Train them yourself! And, at the same time, you'll learn more than you can imagine!

It's not so difficult.

1. Talktools has Sara Rosenfeld Johnson's 3-Part Treatment Plan seminar available on DVD. It's 12 hours of training geared for OTs and SLPs. They earn 1.2 CEUs for attending (good selling point, especially since most therapists have to get a certain number of continuing ed credits to maintain their certification). You can either rent the DVD, or purchase it (or, talk to your local DS support group about getting it). It's pricey, but you'll come out even if you get just a few therapists to attend. Parents can attend as well, but it's a very heavy load of new terminology and can be overwhelming to some.

2. Decide on good dates and a good location (tables, chairs, computer/projection capabilities). Hospital conference rooms, libraries, churches all are possibilities. Don't forget that many school therapists cannot take a day off for training unless it is a teacher work day.

3. Publicize that you're offering training (I can send you my flyer if you want some ideas). Contact local schools and private therapy clinics. Contact local disability non-profits as well (Arc, Autism Society, UCP, etc). Invite parents to attend at a reduced cost (they won't need the CEUs, so the materials fees are lower).

4. Collect registration moneys at least two weeks in advance. You'll need to order "extra viewer kits" for each person in attendance. Place your order with Talktools.

5. Remember that you cannot "make" money by charging more than what you spend. That would be illegal. It's tricky not to do this...so either you can limit the number of attendees, or you can throw in a catered box lunch on each day, or you can refund some of the money back. Don't forget to reimburse yourself if you are paying to make and distribute flyers or have other related expenses.

6. Bring refreshments. Especially banana bread or mini-chocolate bars. It's hard to sit through 6 hours of DVD watching each day!


I've done this several times, sometimes just with parents, sometimes with therapists and parents. Everyone comes out bleary, but filled with new ideas and techniques.

Yesterday was the second day of the training. It was my smoothest event ever. It was terrific because I had the support of the Down Syndrome Association of Greater Richmond, who sponsored it. And I had some great helpers too (Thanks Lyn! Thanks Lancasters! Thanks James!). Richmond now has seven therapists and 14 more families who have the basics of Oral Placement Therapy!

You can make it happen, and your child and your community will benefit.

This sucks. That suckles. This bites.

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


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


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


This doesn't have to be.  


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


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


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


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


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


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

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


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


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

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


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


Here are some of Maddy's OP tools.

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


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

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


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


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

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


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


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

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

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



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


To start at the beginning, click here. 

An Oral Placement Symposium--Charlotte, NC

The Down Syndrome Association of Charlotte is hosting a symposium with Lori Overland.   She is the premiere speech therapist who focuses on oral placement and feeding in the Down syndrome population.

This is a wonderful opportunity to learn about oral placement and the jaw, as well as sensory issues in the mouth.  It's going to be Friday, June 25th at the University of North Carolina Charlotte.

If there's any chance you can make it to Charlotte (or live there already...) it's worth your time and your money (which is only $20, which covers the entire day, including lunch).   Charlotte puts on a good symposium, so you'll be comfortable and well-fed.   And you might even run into me!

Click here for more information on the symposium.

And if you want more information on Oral Placement Therapy, see my initial post explaining it.

Jaw jaw jaw jaw

New vocabulary word: dissociation-- to remove from association; separate.

With regards to human body, this describes the ability to use various sets of muscles independent of one another--to use them separately. When a baby is newborn, she has no head control. If you unwrap her from her swaddling, her body will all flail about. She has no ability to control her muscles individually, so everything moves at once.

Gradually, over the course of months, she starts to get head control. This is the beginning of muscular dissociation. Head-body dissociation is the first accomplishment.

Next on the dissociative oral motor menu comes jaw-from-head. Being able to move the jaw requires control of the head. If the head isn't stable (strong head/neck control), the jaw cannot work independently from the head (just like a baby can use her arms to bat at the mobile, but she cannot use her fingers to grasp until she has fine-tuned her arms; she cannot dissociate her fingers from her arms).

The smaller muscle group is dependent on the strength and stability of the larger muscle group.

Now, let's throw low tone into the mix. It takes a lot longer to get head control. And much much longer to get jaw strength and stability.

Here's a simple exercise for you to do to understand the importance of stability. (courtesy of SRJ)

Sit straight in your chair--back and bottom straight against the back of the chair, with your feet on the floor (or close to it if your legs don't reach), arms in your lap. Your body should be in 90 degree angles at the ankle, knees and hips. Now straighten your legs in front of you. Move your legs together towards the left. Then the right. Point your toes downward. Now point them up.

(Yes, you need to actually do this, not just read it--this is an interactive blog post! And I know you are actually sitting while you are reading this, so it's not like you have at actually move very much!)

You can feel your abdominal muscles working to make the leg muscles behave.

Now, scoot to the front of your chair, with your bottom on the edge of the seat. Your back is not supported. Sit straight up, with your body again at 90 degree angles. Do the same movements--legs straightened out, move side to side, then pointing toes.

Was it easier or harder to move your legs this time?

Yes, much harder. It's because you didn't have stability in your core. The back of the chair provided the stability you needed to perform the muscle task. Your torso and arms, even head and neck were working overtime to try to support your legs. (Try it again and notice which muscles got tight.) Without stability, the leg muscles had to work much harder, and the movements were not as refined as the first time seated appropriately. (If you did this in a computer chair with wheels, you might try it on a regular kitchen chair as well.)

Okay, so stability is important for muscles to work optimally.

Appropriate seating is REALLY important. If your baby/child does not have a firm surface on which to rest her feet, her body will not be able to work optimally. This goes for fine motor skills-doing puzzles, pencil grasp, finger feeding, etc, as well as jaw control. Without a solid footing (literally!), the body spends lots of energy trying to find stability.

The way most people try to compensate for lack of stability is to wrap their feet around the legs of the chair. It's not the best, but it will do in a pinch in the short term. Of course, kids don't always have that option--their legs are too short. So they end up leaning against the high chair tray or desk, or use other forms of bad posture to create stability. Do you have an active child (NDA or with Ds) (NDA=not diagnosed with anything) who can't sit still? Dropping pencils, wiggling in their seat? Frequently adding foot support will help diminish this behavior. Also, having some cushion on the seat helps as well. An actual chair cushion is fine, as long as it doesn't wiggle around, or you could use some dycem to help her bottom stick to the chair. (Dycem= a non-slip rubbery sheet that's a little bit tacky/sticky. It's great stuff--you can cut it to size, it really grips, and can be re-used over and over or permanently glued onto a surface. It's good to use to keep plates and cups in place on a high chair tray. Or cut out shapes to match block shapes and make your own puzzles--tons of things to do with it!)

Last week, when I had Baby K. here, I needed to use Dycem on her booster seat. I didn't have appropriate seating for her (I always end up giving away stuff Hannah has outgrown)--just a booster seat attached to a kitchen chair. Her feet were sticking out straight, and her bottom kept sliding forward. Of course, the lap belt held her in place for safety, but her hips weren't at 90 degrees. So I stuck a piece of Dycem on the seat. You wouldn't think that something to anchor her tush could improve her ability to drink from a straw cup and use her pincer grasp, but it did. She had more stability so she could dissociate more of her muscles.

Back to the jaw...

In my opinion, the missing piece in the Beckman exercises is the lack of specific attention to the jaw. With that technique there is no straightforward way to increase both strength and stability of the jaw. Granted, we didn't get very far in the Beckman program, but it seemed rather passive to me--with the therapist doing the work and the client just allowing her mouth to be massaged, pulled and pushed. It seemed more sensory based rather than strength building. (Disclaimer--I could be way off, and I'm not trying to bash the Beckman protocol--it just didn't make that much sense to me.)

Guess what happens if you don't have stability and strength in the jaw? The tongue and lips cannot dissociate. The larger muscle group (jaw) needs to provide stability for the smaller muscle group (tongue, and then later, lips).

I've seen several blogs recently post Sara Rosenfeld-Johnson's 1997 article The Oral-Motor Myths of Down Syndrome. (Yes! Please print it out and read it until you understand it. It might not be applicable to your child, but it is important that you know and can share this information. Bottle or breast feeding--keep the baby's ear higher than the mouth.) Down Syndrome New Mama posted a link back in February, and it is interesting to read the comments readers left.

I certainly thought Hannah had great oral motor skills before I learned more about oral motor skills. We waited to start puree foods until Hannah could sit relatively well. She was about 9 months old when she could sit well in a high chair (Dycem, where were you when I needed you?). Have you ever tried to eat and swallow while semi-reclined? Isn't it difficult? And the mouth is usually even with the height of the ears if the body is semi-reclined. Our kids with low-set small ears also have low tone in the sphincter at the base of the Eustacian tube. This sphincter's job is to open and close to regulate air pressure in the ear. Of course, frequently in the Ds population, the sphincter is weak, so milk or liquid food (purees) can easily slip in to the Eustacian tube, eventually causing ear infections. Not a good plan. I'm all for delaying solids until a baby can sit.

Back to the jaw, again.

Hannah could and would eat just about anything as a toddler. None of my kids liked meat as toddlers, so it wasn't a surprise that she didn't care for it. She could eat a bagel, so I figured she could chew "tough" foods. She didn't "stuff"-putting too much food in her mouth. She didn't have sensory issues in her mouth--textures weren't a problem, she didn't avoid any foods.

So it came as a surprise to me when her first official oral motor evaluation indicated that Hannah had a weak jaw. Besides a weak jaw, she had unbalanced weakness--her left side was significantly weaker than her right. I never noticed that she chewed primarily on the right side. I didn't ever really look in to see if she was using her tongue to move food from one side of her mouth to another. I was surprised that SRJ could practically pinpoint when the imbalance started--she had me bring a series of pictures from birth to age 3+ so she could see Hannah's smile. I never would have noticed that the left side of her smile was slightly lower than her right. When she pointed it out I could see it. Even a frown showed the imbalance. See that pout?

You can see that her right side has more defined musculature. The little "frown line" goes much further downward on the right. Her left cheek is a little puffier (though she is off kilter a bit anyhow).

I woulda used a new picture if I wasn't so lazy...sorry about that. I'm sure I've got one that would be a better example, but I'd have to hunt through a decade of photos (Eight years ago an inquisitive 4 year old redhead who will remain nameless shuffled a decade's worth of pictures, never to be organized again).

Jaw. How to fix that? How to give the tongue the support it needs to make all the moves it needs?

Next post: Suckling vs. Sucking. Yes, it has everything to do with the jaw.

Oral Placement Therapy

Game on!!

I have way too much to say, so I'm going to try to do this in stages so you won't get bored and you won't get overwhelmed. This is the boring part--at least to me. Hope you're not snoozing when you're done with this post.

I don't know exactly where I learned about oral motor--likely it was from someone on the Einstein listserv when Hannah was about 2.5 years old. We were working on her IEP transition, and I met with a public school Speech Therapist (hereafter known as an SLP--speech and language pathologist). Hannah had been getting private speech since she was a year old. At age 2.5 her language skills were pretty good--she had about 250 spoken words and at least 200 signs. She was reading approximately 50 words. But her speech was sloppy making it difficult for anyone to understand her other than close friends and family. I knew that regular plain old speech therapy was not producing clear articulation in the Down syndrome population--I had met too many teens and adults whom I could barely understand. It wasn't going to cut it. I needed to find something out of the box.

I asked the school SLP if she knew anything about oral motor, specifically about Sara Rosenfeld-Johnson's techniques (hereafter known as SRJ). She said she didn't, but she'd research it. She came back with some exercises that she found on the internet. I thought they were weird (turns out I was right). She had Hannah try to touch her tongue to her nose, and to her chin, and side to side. What I know now is that it is TOTALLY inappropriate to do muscle (tongue) exercises outside of the mouth--ESPECIALLY for a child who is dealing with tongue thrust. She already knew how to keep her tongue out of her mouth--I needed help getting her to keep it in her mouth. The goal of oral motor therapy is to normalize the musculature in the mouth--sensory, strength and fine tuning. Those low toned weak jaw, tongue and lip muscles need specific exercises to get strong. If the muscles are "normalized" then "normal" articulation is possible.

After a few weeks with the school therapist she gave me the name of a private therapist who worked on muscle based therapy. We immediately set up an appointment with Miss Jenn. Miss Jenn had training in Debra Beckman's techniques. I didn't really like them very much, but it was better than nothing. Over time I introduced Miss Jenn to SRJ's website. Blessedly, Miss Jenn was fascinated with Talktools. She decided to pursue training and became our first viable link to oral motor therapy.

Hannah started working with therapy tools like therapeutic drinking straws, bubbles, horns and re-learning how to chew. She was not a pleasant client. It was hard work to get her to comply with her "mouthwork". Hannah has always been independent minded (is that a euphemism for stubborn?).


Oooh. What a glare!

Fortunately she survived her preschool years (and so did I), and she has gradually become more compliant.

When Hannah was four years old she had an opportunity to get an evaluation with SRJ. My parents had been saving college funds for each grand child. They asked if we'd like to use Hannah's college money for an evaluation. YES, PLEASE! And away we went...

Next up: The Nitty Gritty facts about the Jaw. I know, you can hardly wait!

Click here to read the Jaw post.

Passions

Hannah and Sara Rosenfeld-Johnson

During our drive up to Philadelphia the other day, I was thinking about blogging. I realized that I have not spent much time discussing my two biggest passions in the Down syndrome world. What is up with that? 18 months of blogging and I've barely started on the good stuff!

Here they are:

1. Early Reading

2. Oral Placement Therapy

These two ideas are the foundation upon which we built Hannah. Really.

A foundation.

Infrastructure. Concrete. Supportive. Steady. Footing.

Both early reading and OPT (also known as Oral Motor Therapy) have made a huge impact in Hannah's life. Out of all the things we've done with Hannah over the past 12 years, these two changed her life's trajectory.

So I'm giving you fair warning! There are going to be posts about this, and you're going to have homework to do!

Since I've got a million details to which I must attend in the next couple of days, I'll give you a quick synopsis of our trip to Philly.

It. Was. Great.

Encouraging and fun. Even with silly faces.