What a New Mom Needs

When you have a baby, especially your first baby, you really need access to good information. Learning to feed your baby, obsessing over how many dirty diapers a day there are, figuring out which cry means what... we all go through it, and when we need help we have our moms, friends, books, the Internet, and a myriad of other resources. But the one thing we come fully equipped with is expectation. We know what babies look like. We have likely held a few, maybe helped out by babysitting, and we have certainly seen them everywhere.

What about when your baby is born with Down syndrome? Suddenly you realize you don’t know much about it and maybe you can’t even remember ever seeing a baby like yours. You might experience fearfulness and your previously held expectations may no longer apply. What you need is to see other babies, children, teens, adults... people with Down syndrome so that you can know right away that there is nothing to fear about your new love. The International Down Syndrome Coalition has created a video, a compilation of awesomeness that I wish every new mom could see. Get ready for dancing, swimming, four-wheeling, rockin’ out, and a whole lotta beautiful...



Oh and all that other stuff that's good to know? Click around. It's here somewhere :-)

We Are Lefties

Ok maybe not all of our children are lefties, but an uncanny (and disproportionate ) amount of people with Down syndrome are either lefties or ambidextrous. While 13% of the general population is left-handed, our (non-scientific) poll showed that 41% of people with Ds are left-handed and 10% are ambidextrous.

Got a lefty? Here is a wonderful website that sells everything you can think of in a left-handed version.

And the winner is...
Stephanie from Two Times the Fun is the winner of the $25 Amazon gift certificate. Email me with the email address that you would like the certificate purchased for, and I will get it right to you. Thanks to everyone who participated in the poll.

Resorting to Bribery :-)

There are hundreds of us, even thousands of us... parents, siblings, caretakers... people who know—really know— someone with Down syndrome. Combined we have a wealth of knowledge that surpasses any book written about Down syndrome, any expert’s opinion, and all stereotypes.

The only way to harness that knowledge is to come together and share it. Does left-handedness occur more often in the population of people with Down syndrome? Only we can answer that question. I am asking you to share your expertise on your child. I did a little begging on FB and now I am going to try bribery...

Take the poll over in the left column, leave a comment saying that you did (and how you voted if you want to) and you will be entered to win a $25 Amazon gift card. If 500 people take the poll, I will up it to a $50 gift card. (If you are one of those who already voted, just leave a comment saying so and you are in.)

Thank you for participating. Every one of us matters.

Fact or Fiction? Many People with Down Syndrome Are Left-Handed

Being left-handed means that the right hemisphere of the brain is dominant. The right side of the brain controls music, art, creativity, perception, and emotions. It is what we would call the holistic thinking mode. Left-handed people are more likely to be visual thinkers.

Right-handers have left-brain dominance which controls the areas of speech, language, writing, logic, mathematics, and science. It is thought of as the linear thinking mode.

In most cases being left-handed is a matter of heredity... it must be passed down to you by your parents genes, however there is some evidence to show that people with neurological differences tend to be left-handed. People with Down syndrome would fit into that category.

It would be easy here to tap into personality stereotypes and suggest that maybe the 21st chromosome has something to do with right-brain dominance but instead I am going to go with personal observation. I have three children with Down syndrome, all biologically unrelated, and guess what? They all favor their left hand. The oldest is 5 and the youngest is 2, so none have completely settled on which hand it will be but for now they lean left.

Teaching a baby with Down syndrome to eat with utensils can be difficult if the baby is a budding lefty trying to use righty tools. My one daughter refused to self-feed using a spoon or fork and continuously ditched the utensils to use her bare hands. It was frustrating for both of us until I realized that she wanted to, and would, use utensils in her left hand to feed herself.

If you have a lefty, you may want to pick up a set of left-handed utensils for your budding eater. These EasieEaters curved utensils go for about $15 on Amazon.

If you are not sure yet which hand your sweetie prefers, you can get a set of Benders that your baby can practice with. I like these because you can bend them side to side or even up to suit your child’s current skills, though I find them to be only really useful with foods that stick to them because of their small bowl size.

Your Turn
Take the poll in the sidebar. Is your child with Down syndrome a lefty, righty or ambidexterous? Let’s find out if there is any truth to the left-handed rumor.

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?

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 :-)

Umbilical Cord Idiosyncracies

My daughter spent some time fighting monsters in the NICU. Most days she hung out in just her diaper so we had a good day-to-day view of her umbilical cord stump. I let the nurses know right away that if she should lose it when I wasn’t there, they were to bag it for me to keep.

(Enough with the eeewing... I had no idea it was gross and uncommon until the NICU nurses gave me the funny look and pointed out that usually they just throw them away.)

The average umbilical cord stump falls off within eight to 21 days, with most gone by two weeks. When my daughter hit four weeks old, the staff started commenting that it was a little weird that hers was holding out. Her NICU pictures remind me that sometime between day 35 and 38, a pediatric surgeon played with it until it came off. I’ll bet he was one of those kids that had a loose tooth out within days.

“Could it be the Down syndrome?” I heard the doctors wondering during rounds one evening. No one knew. I forgot all about it until I read out here in our blog community that someone else’s baby hung on to their cord stump for a long time as well. My curiosity got the best of me and I started looking into it.

Who knew the umbilical cord could be so interesting... there are umbilical hernias (20% of general population), two vessel cords (1 in 100-500 general pregnancies), late cord stump loss, and short umbilical cords.

Your Turn
Are babies with Down syndrome prone to umbilical code idiosyncrasies? Let’s find out. Take the poll <--- left column 5 blocks down. Please comment and let us know anything interesting that comes to mind concerning your child’s cord or umbilical cords in general.

Mama Bear, Mama Bear, What Do You See?

Just as newborn babies of differing nationalities or races have visible distinguishing features, so do babies with Down syndrome. While babies with Down syndrome do share some unique features, they mostly look like their biological parents and other family members. All babies are different and not every baby will have all or even most of the physical characteristics described below.

Babies with Down syndrome have very delicate facial features (which have no negative effect on your baby’s senses or intelligence.) You will find that your baby’s features are very proportionate.

Head: your baby may have a marginally smaller head circumference. This size difference is hardly noticeable and you may not even see it or realize it until your pediatrician measures him and marks his growth chart. The back of your baby’s neck may be chunky but this disappears with age. The back of your baby’s head may be a bit less rounded than the average newborn.

Nose: your baby may have a cute button nose with a softly contoured nasal bridge. This smoothness lends itself to a slightly more broad facial appearance.

Eyes: your baby’s eyes may turn gently upward at the outer edge. His actual eyes will be the same size as any other baby but may give the illusion of being beautifully enhanced if your baby has sparkling brushfield spots. Your baby’s eyes may also have small crinkles at the inner corner called epicanthal folds.



Mouth: your baby may have a little rosebud mouth. A smaller mouth may give the illusion that an average sized tongue is bigger than it actually is, (though the jury is still out on whether some children with Ds do have more ample tongues.)



Ears: babies with Ds are graced with petite ears that may or may not have a slight curve at the top. Sometimes baby’s ears are set a little further down on his head though this is hardly noticeable.

Hands: some babies with Ds have a single line on their palms called a transverse palmar crease. This crease occurs in more than 3 percent of the general population.Your baby’s hands may be smaller and his fingers maybe shorter than average. This does not interfere with a baby’s gross or fine motor skills.

Feet: some babies have a small space between their first and second toes which is often accompanied by a vertical crease on the sole at this spot.



Chest: your baby’s chest may appear slightly bowed out or slightly depressed. This minor difference in shape has no negative effect on your baby.

Skin and hair: you may find yourself with a fair-skinned baby who has lighter colored hair than yours. Some babies have very fine soft hair that may be thin in spots. These thinner spots should fill in as your baby grows.

Muscle tone: many babies with Ds have low muscle tone. While this has no bearing on how your baby looks, you will notice that your baby is a bit floppy with an amazing level of flexibility.

So, mama bear, mama bear, what do you see? I see an adorable baby looking at me.


Picture credits: Kacey's daughter Ella Grace, and Lisa's son Finnian