Fluff 'n stuff

Busy life here.

I think I must set the record straight.  Some of you have gotten the impression that I am organized and structured.   Nothing could be farther from the truth.  I am a clutterer.  A piler. A procrastinator. A good hearted one, to be sure, but still, I am not tidy nor timely.  I do not have it "all together".  I let things go.  I have good intentions, but I don't get everything done on my list (if I can even find my list).

I know it's easy to see this tidy blog, and read about Hannah's busy schedule of outsourced activities, and think that I've got it all figured out.  But, really, I don't.   I invite people over to motivate me to pull out the vacuum and unearth the kitchen table.  (I actually do invite people over because I like to have them here.)(But I do need to vacuum and shift piles of mail/newspaper/coupons/"important" things to less obvious locations.)

I have window treatments for my bedroom that have been awaiting installation for nearly two years.   Hannah's drapes that have been waiting even longer.

I am a starter, but not a finisher.  I begin projects, but rarely complete them unless I have a serious deadline. I'll get 80% finished and then run out of steam.  

I come from a long line of clutterers and procrastinators.  I don't like to make my bed.  I like to imagine that there might be a few minutes in the day when I could crawl back in to read a chapter or two.  And if I made the bed, then it would not beckon me so.  And besides, I'd just have to unmake it at night.

Usually this problem solves itself since I tend to awaken before James.   He is a bed maker.  He is tidy.  He keeps everything in its place.  Of course, he did go to the Naval Academy, where many of his Felix Unger tendencies emerged.

But in 23 years of marriage we have managed to survive our disparate organizational styles.  Over the years I have somewhat reigned in my chaos, and he has relaxed his standards.

Lest you disbelieve, here is some photo evidence:

James and I have back-to-back computer workstations.

Here is my workspace.

Mine is, shall we say, "lived in".  

Please note: pink sock waiting to be mended, 2-3 cameras, a copy of Gifts 2, various post-it notes, paperwork and sunscreen.  

James, on the other hand, seems to live in a model home.

Here is James' night stand.

And here's mine. Overflow of reading material and belated greeting cards.  Yes, that is a sample paint blotch on the wall.  It's been there for 2 years.  I will get the room painted at some point.  Hopefully before we have to sell the house.

I could show you many more pictures...the walk-in closet we share.  My half is called the "stumble-in closet".

Or the bathroom, with its dual sinks.  To be fair, I have all of Hannah's hair clips and ponytail holders (we call them hair-doodees) as well as my "products".

Or you could stop in and see the kitchen when James is away on a business trip...that's not so pretty either. He's in charge of the dishes.   I *can* do dishes, and will in a pinch.  But it's not a top priority.

So there you have it.  I don't have it all together.  And I rather like it that way.

Online Course for Pediatricians

Dr. Brian Skotko (love him) recently created an online course about Down syndrome for primary care physicians and other healthcare professionals.

It's through the Harvard Medical School Department of Continuing Education and it costs $20.    Not a bad way to get a doctor to get up-to-date information regarding Down syndrome!

Share the link with your physician!

Down Syndrome: Healthcare Updates for the Primary Care Pediatrician

If you'd like to read more about Dr. Skotko, check out his webpage.   Besides specializing in cognitive disablities, he has a sister with Down syndrome!  He does lots of presentations for Down syndrome support groups around the country.  If you get the chance to hear him speak, it's definitely worth it.

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.

Promises promises!

Yes, I REALLY will get the tongue/jaw post up.  I've just arranged for a little helper to be my guest so we'll have someone really cute to exemplify some methods of improving jaw strength and other oral placement techniques.   I meet with this little cherub on Tuesday, so hopefully I'll get the post up soon thereafter.

In the meantime I'm tired of holding off regular posts in the hopes that I'd get my OPT homework done, so I've got lots to say.   If only I could remember what it was...

Aha!  Thank you, memory banks!  One topic was Self-Talk.   I've touched on this before, but recently I've had several moms contact me (local friends and online readers) who have been very concerned about their child talking to himself.   There is a great Disability Solutions article on Self Talk.   I love me some Disability Solutions.  There is a great one on sexuality as well--which I encourage you to read, even if you've got a youngster--it really isn't scary, and it's important that you have a bit of a road map in your head.   Disability Solutions used to be a free printed publication--very very nicely done.  But now it's all online, which is great, but I miss having it to hold in my hand and review over and over again.  Tons of information and ideas in those issues, all archived now here.

But back to self-talk.  In the Down syndrome population it's very common for individuals to spend time talking and talking to themselves.  It's not a sign of mental illnesss.  It's not exactly "invisible friends" talk either.  As preschoolers, my typically developing kids had invisible friends.  And they were "real" friends--at least, to them--they were invented and well loved.  Hannah didn't have this stage when she was younger.

But she definitely talks to "characters" now.  She doesn't make up her friends.  She usually uses TV animated characters.  She only does it when she's alone (or thinks she's alone).  She knows that it's not socially appropriate to talk to herself (or Scooby Doo and the Gang) when others are around.    It seems to be a way of processing and practicing language.  Her latest big thing was her discovery of Rescue Heroes.  Remember back a decade ago?  There was a TV show (and a well-marketed toy line) about Rescue Heroes who responded to emergencies around the world (Global Response Team!!!).   Yes, Hannah has an affinity for the 80s and 90s--from sappy children's singers to extremely outdated TV shows.  We view it as another challenge to overcome at some point in her life. (Ha!)

So lately, we overhear heated discussions between "Hannah" and Billy Blazes and Wendy Waters (both are firefighters), Jake Justice (policeman) and Ariel Flyer (a pilot).  I can interrupt her and she'll easily transition to answer me.  It's not like she's in another world.  She's mostly just playing.  Playing with language, and processing ideas and conversational skills.

I usually can't tell to "whom" she is speaking--which character she's chosen for a particular discussion.  Usually the "conversations" aren't about rescuing anybody (if it's the Heroes who are chosen one day), or about solving The Mystery (if it's Scooby Doo), or singing (it it's the Wiggles, which thankfully have disappeared).  She usually has very formal and polite conversations when she self-talks.   Here's an average "conversation", Hannah is in red, the other "speakers" are unknown to me unless she uses their names.

"What do you think about that??"
"Why, Hannah, I think that's a wonderful idea!   Let's do it now."
"But don't forget that we should go upstairs first to get the blanket we need."
"Oh, yes, we need to get the blanket.  Then we can use it for the roof"  (sofa cushion fort)
"That's good thinking Hannah."

She uses a different tone of voice when she is self-talking.  It's a little playful, but still formal, and always complimentary.   I don't know what she is processing--I don't know why she does it, since it's not like she's wrestling with big ideas and concepts.   It's more like she's practicing.   Or, she's just playing.  And it makes her happy.

Sometimes I wonder if it's because she's lonely.  She'll tell me if she's lonely. She's happy to play with her friends.  And she can keep herself entertained when she's alone with art and toys.

Self-talk is definitely entertaining.  We catch some of her best phrases and ridiculous ideas when she's self-talking.  If I don't write them down immediately I forget.

Overheard last week while she was climbing the stairs:
"Hey, umm,  Hannah?  Wedgie."
"Oh, thanks for the tip."

Self-talk is not a bad thing, and it's nothing to be worried about.   If you're unable to interrupt the self-talk, and you really think that your child is "hearing voices", rather than "playing" voices, then you need to investigate further.

Christian Writing Opportunity

My sister is a writer for Guideposts.  She just received a contract to put together a book of daily devotionals for new moms. It will contain SHORT pieces written specifically to help new mothers through that rough first year, and all the attendant spiritual and emotional upheaval that entails. (There will also be a web-based daily delivery system, so moms can opt to get their nourishment while checking email.)

The goal is to have perhaps ten writers contribute to the book, preferably from across the country. She already has a couple of NY-area writers, and is looking for insightful Christian moms elsewhere who can write well. The list of would-love-to-finds include:

- moms from different ethnic backgrounds

- a mom who has adopted a child

- a mom whose child was born with a disability

- a single or working mom

This is an income-producing opportunity. Writers don't necessarily need to have been published, nor do they need to be in the middle of that new-mom stage at the moment. They do need to be articulate, and must be able to use real-life experiences as the base for illustrating how they grew/struggled spiritually.

She has put together some writer's guidelines. If you are interested, or know other mothers who might be interested in "auditioning" to write for this book, please forward this information to them. 

If you are interested, please email me so I can connect you with my sister.    Hannahshenanigans@gmail.com 

Good news for me

Yup, that's a full rainbow sheltering our home!

I know I've been pretty silent lately.    Yesterday I got my pathology report from my surgery and it's all clear!  I'm really happy that I'm free and clear.

The doctor removed all 13 stitches, leaving me with steri-strips until Monday.  It's not as itchy as the stitches so far.   I tend to react to adhesives, so we'll see how it goes.  I still have limitations on exercising and bending, but I can live with that.  Though my garden is suffering.   Better it than me I suppose!

James was out of town all week, so Hannah was been my nurse assistant.  She's pretty good at changing dressings, though I think she's happy to be done with that job!

I have been slowly writing the next Oral Placement post. Well, the truth is, that I've been procrastinating.  I started writing it several weeks ago, but I've been using the surgery as an excuse.  Sorry!   It's so time consuming to write it out so you can understand it!   It would be easier to have a video conference.  Maybe I'll have Hannah video me talking about it--then I could actually show you what I'm talking about.  What do you think?

     My pot o'gold