April 24, 2010


The news of Carly G.'s unexpected passing has been filling my heart and mind.   I first read the news from her mom on Facebook just as I was on my way out for the afternoon.   When I was able to get back to the computer late last night I was feeling lost.

This blogging community is pretty amazing.  The sharing, the growing, the friendship, the support.  It brings us close.   Sharing our joys and challenges makes things easier.  But this.  This is impossible to understand.  Our virtual Down syndrome family, related by extra DNA, is grieving for the loss of this spunky little girl.

Our hearts goes out to Joany, Paul, Ashleigh and Brad.

April 20, 2010


Sorry I've been out of service for a week and a half, or however long it's been.   Aside from having a crazy schedule, I recently had some minor surgery which has slowed me down considerably.  This oxycontin is a considerable pharmaceutical!   Since I'm homebound for a couple more days, I'm hoping to actually finish up my tongue/jaw post. But in the meantime, some fun.

Highlights of our latest Shenanigans:

2 parents took 1 excited girl to the circus!

1 dog who's needed 2 trips to the vet for teeth cleaning and 1 weird self-inflicted itching injury.

1 Moms Weekend in chilly Nags Head, NC with other moms of children with Down syndrome.
  (Sure, that's root beer in my hand  ;-)

2 Special Olympics swim meets.

1 horse lesson

2 soccer practices (her favorite)

1 big brother + friends home for the weekend  (Sorry, no real pictures.  Just imagine several brainy males discussing topics ranging from strategy games to mitochondria.)
(In case you want to hear a song about mitochondria, you can find a terrible one here.)

The finale:  1 more first-thing-in-the-morning picture.  Way to go, Sherlock! 

(the precursor picture can be found here)

p.s. Hannah is featured on Windmills and Tulips today!  Thanks Jasmine!

April 8, 2010

NanTalk and Odds and Ends

Boy! This OPT stuff is difficult to write. I want it to be understandable, yet accurate. There's a ton of information to impart, and most of it is easier to demonstrate rather than write. Time to pull out the video camera.

While my brain is filled with ideas and directions for my next post, I'm going to do a regular little ol' post about stuff going on here.

The other day I was planning on grilling cheeseburgers for dinner. I had the patties prepared, the water heating for the noodles with turmeric (oh so yummy!), and the veggies ready to steam. And then I remembered that we were out of gas for the grill. James offered to go get a new canister, but I was hungry NOW. So I came up with a very lame old childhood recipe to use the ingredients I had.

Remember having that macaroni/tomato sauce/ground beef casserole? It's pitiful. When I was young, my sister named it "Glop". It's an onomatopoetic name: the sound of it being scooped up out of the pot and glopped onto the plate.

In James' family it was called Goulash.

Hannah delighted in eating it (unlike her parents). I told her about the different names for this tasty entree, and she came up with her own: Glopagos dinner.

Another random Nantalk, while attempting to leap all the way down the hall, "Wow! I just got my Grand Jeté back! I wondered where it went!"

Two weeks ago, before we knew what the sun looked like, Hannah got to throw out the first pitch at a softball tournament fundraiser! It was so much fun, even in the freezing cold weather!

She's not playing baseball this season, so it was fun for her to be out on the field.

Chris is nearing the end of his semester. It's been a challenging one for him--a heavy course load and one class that is pure torture for him. He just finished a massive research paper and is catching his breath before exams in a few weeks. He's also awaiting his housing assignment--William and Mary has a confusing and cumbersome method of lottery dorm assignments (at least to me!). They don't have enough dorms, so some students have to live off campus. It will be nice to know where he's going to be in the fall. This summer he's hoping to get an internship at one of the local hospitals.

Kate is battling the onslaught of insects in Jordan. She visited with Peace Corps friends over the Easter weekend, and when she returned to her house she said "A legion of bugs has invaded my house." Plus some giant spiders.

I hope they've all moved out by the time I go visit in July! I am planning a trip to Jordan.Kate and I will also go see the sights in Egypt! I'm so excited! At first I was thinking of bringing Hannah along, but I think that it would be a bit much for her. She hasn't done much international travel (just Mexico and some Caribbean countries), and I think the heat and the cultural differences would be a lot for her to handle.

Our time with Baby K. was lots of fun. She has made so much progress since she last visited. She's talking, singing, walking, and doing puzzles. She loved the dogs, and they thought she was tasty...mmm, baby fingers to lick!

It was nice having a little one in the house, but it's also nice not having a little one in the house, if you know what I mean. We'll get to see her again this summer. Sweet thing.

Hope you have a good weekend--I'm headed off to Nags Head for a Moms' Retreat!

April 7, 2010

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.

April 4, 2010

Minimalist Easter post

This year's eggs, courtesy of Hannah and some thick rubber bands.

Flashback bunny--10 years ago.

Blessed Easter to you who celebrate the joy that He is risen.

April 3, 2010

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!