Oral Motor Myths

Myths... a high-arched narrow palatal vault (that would be the “roof” of the mouth), tongue protrusion, mild to moderate conductive hearing loss, chronic upper respiratory infections, mouth breathing, habitual open mouth posture, and the impression that a child's tongue is too big for his mouth... all myths.

Speech and language pathology expert, Sara Rosenfeld-Johnson published an article back in 1997 titled, The Oral Motor Myths of Down Syndrome. In the article she lists seven structural/functional disorders (the myths above) that she feels can be prevented.

In other words, infants with Down syndrome are not born with these oral motor differences; instead they develop them based on inappropriate therapeutic approaches to feeding difficulties present at birth due to low tone.

Rosenfeld-Johnson writes, “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.”

The events she refers to begin with making it as easy as possible for the newborn to eat which sets in motion a downward spiral of circumstances that lead to the development of the above-named oral motor irregularities.

There is an assumption in the medical community that babies with Down syndrome do not eat well, and that they inevitably demonstrate all or most of the seven structural/functional disorders seen in many people who have Down syndrome. Because successful nutritional intake is one of the primary goals that needs to be reached ASAP with a newborn, nurses and doctors often push solutions that may be in direct conflict with the best oral-motor therapy techniques for improving a baby’s oral motor skills.

I can tell you from experience that this is true. I had a baby with severe heart defects that could not eat enough on her own to survive. She could not successfully nurse, nor would she drink well from a bottle. I did not know about Sara Rosenfeld-Johnson’s theories. If I had known, I would have used them as support for my stubborn ideas about feeding and continuous oral motor stimulation.

So what are SRJ’s recommendations?
1. When a baby is being fed, his mouth must always be lower than his ears.

2. A breastfeeding mom should stimulate the mammary glands while her baby is nursing to increase milk flow. Over time, as the baby’s strength increases, gland stim will no longer be necessary.

3. A bottle-feeding parent should use bottles with disposable liners. This allows the air to be pushed out of the bottle causing a vacuum and making it possible to feed in a position where the bottle nipple is presented from below the mouth. The caregiver can push gently against the liner if necessary to facilitate the flow. Rosenfeld-Johnson explains, “This position encourages a slight chin tuck and 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.”

The article clearly explains how feeding approaches can alter your baby’s future both positively and negatively, making it a valuable read.

Your Turn
Can following these fairly simple suggestions have a significant effect on your baby’s future oral motor structural and functional formation? My child’s oral motor development has been consistent with what was presented in the article, so based on that (and the fact that the points in the article made sense) I would say give it a try.

What about you? Did you by chance feed from birth according to SRJ’s method? Did you not? Does your child exhibit any of the mythical characteristics, or not?

Heart Scar

One of the most frightening things parents may ever face is surgery on their baby. It is said that approximately 45% of babies with Down syndrome are born with a congenital heart defect. Many of these defects require corrective surgery. Before you read anything else, know that heart surgery today has a 95-99% survival rate. I can’t minimize the fear and risks involved but it is important to know that these are very common surgeries performed by excellent, experienced pediatric heart surgeons.

The most common defect is a hole in the heart between the two upper and/or lower chambers which allows oxygenated blood to mix with blood that is returning into the heart. These types of defects are called AV Canal (endocardial cushion defect), VSD, and the less common ASD.

The hole in the heart types of defects usually lead to open heart surgery when the baby has gained some weight and grown a bit. The timing of surgery is often decided by balancing weight gain versus the slide toward congestive heart failure (CHF). CHF is the medical term for saying that the heart cannot continue to do its job without the support of medication (lasix, digoxin, etc.) and perhaps oxygen.

While I am talking about such scary stuff, I will also mention there are more rare heart defects that require surgery before a baby can leave the NICU. A coarctation of the aorta is one such defect.

A baby with a congenital heart defect will be followed by a pediatric cardiologist. She will get echocardiograms (a fancy heart ultrasound) and heart x-rays. She might also get an ECG (the test where they stick the wires on her chest and measure the heart’s electrical activity), or even perhaps a heart MRI. All of this information is shared with a pediatric heart surgeon and he will use it to determine the appropriate surgical fix.

When I first heard (at 30 weeks gestation) that my baby would need heart surgery for an AV Canal defect, I was terrified. The sick-to-my-stomach kind of scared. And I had visions of an angry red zipper scar running from the bottom of her neck to her abdomen. When at three weeks old they told me she had a coarctation of the aorta that required immediate surgery, you could have knocked me over with a single breath.

So yeah, I won’t minimize it. Heart surgery is scary for us parents. The first look at recovery is daunting. There are multiple wires and tubes attached, each serving a unique purpose. But, your baby is feeling no pain and she is being cared for by two or more cardiac nurses specially trained to aid in her recovery. You however may need a stiff drink.

The recovery period for a baby is amazingly quick. In most cases, you will be home within two weeks of surgery. Six weeks later, you will stare at your strong happy baby and wonder if it ever really happened. And there it will be, a thin line a few inches long drawn down her chest, the heart scar. The badge of courage and strength, that if kept out of the sun, will nearly fade away over the next few years.



Your Turn
If your baby has a congenital heart defect that requires surgical repair, you may want to take some time to visit the blogs listed under the Sweethearts & Fighters blogroll in the left column. The path is well worn and you may find encouragement and peace as you read through the stories of those who have walked before you.

More Sweet Babies

Our little cutie-pies just keep coming!


William's mom, Tracy, isn't blogging yet but maybe we can coax her into sharing a photo with us...



Rozie is just the prettiest thing ever! I'm warning you though, don't visit if you are hungry because her mommy has some of the yummiest looking treats on her blog and you could blow your diet just coveting them.



This handsome boy made an early entrance, beating his due date by ten weeks. He is a strong fighter with great big giant blue eyes.



LC Boom Boom, or rather Princess Pudge, has an adorable new little brother. His mom, Ch, has one of the funniest blogs out here. So go check him out and enjoy.


If you would like our community to know about the arrival of a child with Down syndrome, please send an email to ds.mama with the baby's info and an email address or blog/website address of the baby's mom or dad.

Communication 101

Parents look forward to hearing that first word... “dada” or perhaps “mama”. And when it comes, we are thrilled because we know that our child has connected words to objects, and that the rest of our spoken language is just a matter of time. But it is important to remember that speech is just one component of communication, and usually the last piece to be mastered.

The first communications between mom and baby begin at birth with cries, rooting, facial expressions, and eye contact (and maybe even before birth since we know that a newborn can recognize his mother's voice). While these first methods of communication come naturally, for babies with Down syndrome the presentation might be fainter or appear later than expected. For example, the smile is one of the first communication signals a baby gives us and it is important to realize that babies with Ds might smile later, less frequently, and less boldly than other children. The difference between a parent’s expectations and a baby’s skills can disrupt the mom’s ability to interpret her baby’s signals, making it harder for a harmonious relationship to develop.

What’s a Mom To Do
Like we do with all new love relationships, spend time studying your baby’s expressions and movements. Become sensitive to whatever communiques your baby is giving and respond to them accordingly with both words and gestures. It won’t be long before your baby figures out that he is the cause of these positive results. And so begins what we call “communicative intent”, using communication with the intention of affecting the environment.

Irene Johansson, author of “Language Development in Children with Special Needs”, suggests tactile intervention in the form of newborn massage several times a day. This provides the opportunity for the caregiver to communicate with the baby while the baby is experiencing a physical stimulation that heightens his awareness.

Requesting/Protesting
It is imperative to encourage a baby’s desire to communicate. The best way to do this is to be very responsive to him when he initiates any of the natural communiques of requesting and protesting. Don’t let him cry it out or make him wait if you can help it. Reward him with a smile, caress, or song whenever he is looking at you, kicking his feet or reaching out. Don’t worry about spoiling your baby by always giving quick and direct feedback. You cannot spoil a newborn with too much responsiveness or attention. And patience is a virtue that can be practiced after your child learns that communication is power.

Gazing
Babies learn a lot about communicating by watching you do it. Research has shown that babies are predisposed to face watching. You can encourage your baby to look at you by keeping him close to eye-level in a carrier, or in a babyseat that is up on a table. If your baby doesn’t have the strength or coordination to watch you, hold her in a position that gives good support to her head and neck. While you are gazing at each other imitate any facial movements she makes, or stimulate her by making noises and expressions. Babies with Ds initiate less often, so take the lead and start a “conversation” whenever you get the chance.

Turn taking
Another important part of communicating is taking turns. You can work on this with your baby by pausing while speaking to him, as if you were listening to his response. You can also practice turn taking by shaking a rattle and then helping your baby to shake his rattle, back and forth several times. This builds the expectation of response, teaching your baby that communication results in response, or rather having your needs and wants met in some way.

Performative Communication
Performative communication is defined as the “speaker’s” deliberate, conscious, and goal-oriented use of communication (speech, signing, picture cards, body language, etc.)(Snyder 1978). Irene Johansson’s book is a week by week program for providing your baby with communication intervention that begins at birth. She makes a great case for why you would want to use her model (which incorporates massage, structured sounds, movement, and more) to help your baby develop strong communication skills.

I did not have this book when Summer was a newborn, and it wouldn’t have mattered because I do not have the discipline to follow such a structured program. However, that said, I have used some of the suggested program for the last year, and believe that for a caregiver who can do it, there would be worthwhile benefit.

Your Turn
Have you posted about a communication topic? Let me know and I will link to you.

To Love Endlessly: Communication
Face the Sunshine: Sign on...

Picture credit: Marissa from To Love Endlessly
John Michael from Monkey Musings

Toothfairy Gone Mad

Since she comes to collect precious baby teeth when they fall out, I am guessing the toothfairy has something to do with making those little tooth buds while babies are cooking in utero. Surely the fairy dust she sprinkles on the gums of babies with Down syndrome must be quite magical because it causes some interesting tooth development.

Babies with Down syndrome often have their teeth come in late (nursing mothers stand up and cheer!) You can expect your baby’s teeth to arrive in any old order they choose, including perhaps not at all for some teeth. (Uh, maybe that fairy got a little too wild with her wand...) And, some teeth may be irregular... as in extra sharp, big, small, or even funky shaped.

What does all this mean (aside from that the toothfairy needs to stop partaking of fairy dust before going to work)? Not much for the under 10 months crowd because tooth eruption tends to be delayed in children with Ds. Babies without teeth can still eat anything that can be mashed by powerful gums and that includes soft well-cooked meats. Your baby can still hurt you by biting you with her gums (nursing mothers can stop cheering now.)

Once your baby’s teeth start arriving, sometimes molars first as was the case with Summer, you should brush them after meals and bottles. (Uh huh, fun fun.) There are lots of baby toothbrushes out there to choose from. Our pediatric dentist recommends the Mam Training toothbrush ($5.99 at Amazon.com as part of a set) and I find it easy to use. It has a long handle and a rounded brush on one end, as well as a gum massager on the other. And don’t forget to floss your baby’s teeth (more fun). I prefer to use floss rather than the fancy new disposable flossers that are out there mainly because it is easier to maneuver around with it in a wriggly baby’s mouth. Good luck finding kid-friendly flavored floss at the drugstore... I score the bubble gum variety when we take the older kids to the dentist. However, since babies with Ds tend to enjoy strong flavors, cinnamon or mint probably works just as well.

There is really no pressing reason to visit a dentist prior to age three (unless some teeth do not come in) but you may want to start shopping for a pediatric dentist who has experience with children who have Ds. We visited a dentist at 15 months because there were signs that teeth might be missing. The dentist confirmed this to be true and suggested X-rays at age two. (We won’t need to do that because she got them for Christmas.) So aside from blog research, some incorrect dental conclusions, and a fancy toothbrush, I can’t think of any good reason to go back before age 3... unless of course, that the toothfairy comes back around and does something crazy with her wand.

Your Turn
While you are here, please take the tooth poll located over in the upper left column. If you leave me a comment saying that you participated in the poll (or that you would have if your baby already had that first tooth :-), you will be entered into the Winter Giveaway. The winner will receive a First Years Star Teether, a NUK straw cup, and bubblegum flavored dental floss. (You are invited to take the poll even if you aren’t interested in the giveaway.)

More 2009 Babies

I know you guys think I have been distracted by eggnog and mounds of Brie cheese... too distracted to get out the rest of the 2009 birth announcements... but I swear it isn’t so. I actually have been suffering (for the last month) through the worst computer quagmire ever. For now, everything is behaving so I will present to you a bunch of new darlings to visit and oooh & aaah over.


Prayer is Always Free


Schye Family


Living Life with E's


Cindy the Artist


The Baby Who Chose Us

If you would like our community to know about the arrival of a child with Down syndrome, please send an email to ds.mama with the baby's info and an email address or blog/website address of the baby's mom or dad.

Somewhere in Kazakhstan...

There is a little girl named Jasmina who is waiting to be adopted. She is a beautiful child who has Down syndrome, and she is the only child with Ds available for adoption through Reece’s Rainbow in Kazakhstan. More than anything I would like to be able to give this child her forever family for Christmas. But I am not God or Santa and I cannot grant her wish with just my will.

I can donate to her adoption grant and I can ask all of you to consider this gift as well. If you have anything left in your charity budget this year, please give to Reece’s Rainbow on behalf of Jasmina or any of the angels that are hoping to be saved from life in an institution.

Reece’s Rainbow accepts PayPal but prefers checks to save on processing fees. If you are going to send Jasmina a Christmas gift for her fund, please make the check out to Reece’s Rainbow and put Jasmina’s name in the memo. Mail the check to: Reece’s Rainbow, PO Box 4024, Gaithersburg, MD 20885. Thank you.

May you and yours be blessed during this wonderful holiday season.

That’s What I Like About You

Back in October I posted “The Best Part,” a few thoughts about the good stuff that comes with Down syndrome. I asked you to tell me your favorite things and what a great response you gave. It was a wonderful reminder that people with Ds are unique and fabulous in so many ways.

Things We Love
People with Ds live in the moment... they have determination and pride. And we have pride for them as we celebrate their milestones. We have the pleasure of never-ending hugs & kisses... wherever at whatever age. People with Ds express uninhibited love & joy. They have a lovely innocence about them...

“I love the innocence. The fact that my son doesn't see jealousy or envy in others, doesn't fuss when someone takes one of his toys, doesn't try to take others things - he just accepts everyone and everything at face value. I love that.”(Karen)

As parents and loved ones, we have become part of a wonderful community, we have learned through self-introspection the value of life, and have developed a great appreciation for the little things. We have learned to slow down and enjoy what is, and we have experienced personal growth... becoming advocates and cultivating an acute empathy for others...

“Having a child who is 'different' forced me to break down stereotypes and prejudices that I never knew I had. It makes me want to defend and advocate all of those in our society who are vulnerable and overlooked.” (Stephanie)

People with Ds have extraordinary physical characteristics... a chunky kissable neck, amazingly talented toes, stunningly beautiful brushfield spots in their eyes, and delicate facial features. They are sincere, caring, and non-judgemental of others. They are charitable, kind, and altruistic...

“My Favorite thing about DS is that having Ricki taught me to accept and love the positive things in everyone, and to avoid dwelling on the negative. I then applied this to my (then) teens. It was beneficial for all of us.” (Ricki’s mom)

Many babies with Ds give us the opportunity to enjoy an extended infancy, and a baby who sleeps through the night. They reward us daily with a pure, abundant, and uncomplicated love. They are easygoing...

“I love how cuddly Miss B is and how easy she is to console. When she is crying, pretty much all you have to do is pick her up and snuggle her in, and she's happy again. We've had very few of those “Is it your diaper? Are you hungry? Are you hurt? Are you sick? Is it gas? Are you hot? Are you cold? Why are you crying and why won't you stop??!!!??” moments with Miss Banana. Gotta love that too!” (Carrie)

People with Ds have the most beautiful genuine smiles that they give freely to all...and the cutest protest pouts you ever did see...

“I love Maddie's smile...she smiles with her whole body...her hugs are big, warm, and so calming...and I love how when she does not like something she lets us know with the greatest wrinkled/scrunched face...she is priceless!”(Chromosomally Enhanced)

I’ve already said that my favorite part of Ds so far is the extension of the trip through babyland but I want to also mention how much I love it that my daughter plays with her toys... really plays with them. With my typical kids, buying toys (other than Legos) was a waste of money... there was zero interest in toys geared for babies. With Summer I have the pleasure of watching her gradually figure out how each toy works and then actually playing with it over and over. She has taught me that life is not about the race to success... that instead it is the joy and peace of this moment, the only moment of our lives that is guaranteed.

Oh yeah, and the toes... did I mention the toes?

Your Turn
You guys wrote some awesome posts on this subject, and if anyone else is inspired to do so, please send me your link so that I can add it to the list.

Zip - Perdue - Dee - Dah
Mutterings & Musings
The Tao Of Tulips
Livin for the Love
SaySay’s Reality
Bradi & Madi’s Blog
Life as We Know It

Guess Who Is Getting the Goodie Box
Random.org picked Brandie and Goldie from Livin for the Love. Congratulations! Email me and I will get your package out right away :-)