EI—Who, What, When, and Why

The purpose of Early Intervention (EI) is to teach us how to give our little ones the extra support they may need to develop effective motor planning and skills.



EI starts off with the assignment of an EI service coordinator and an initial evaluation to figure out what therapeutical services will be beneficial for your child. During the evaluation you will be asked what things are important to you and your family concerning your child. Based on this evaluation and your input, a team of therapists is pulled together to help you and your child reach the goals you have set out.

The goals are written up for a six month period in a document called an Individualized Family Service Plan (IFSP). The IFSP is a living document that gets updated every six months (and sometimes sooner depending on any special circumstances) to reflect your families on-going needs and goals.



It is important to know three things about EI therapists... first of all, they work for you and your child, and you get to decide if the relationship is working out. If you are uncomfortable with a therapist for any reason at all, you can ask your EI service coordinator to switch the provider. Second, not all EI therapists have experience working with children with Down syndrome. And third, there are several concentrations within specific therapy fields. For example, some occupational therapists may have a strong background in sensory, while others may have more experience with self-care skills such as feeding and dressing.

When you are determining who will be working with your child, you should make sure the provider has experience with children with Down syndrome, and a level of expertise in the areas that are specific to your goals. In other words, not any old therapist will do.



Almost all infants with Down syndrome can benefit from working with a physical therapist (PT) and a speech and language pathologist (SLP) with a background in newborn feeding and oral motor skill development. Some infants may benefit from spending time with an occupational therapist (OT) who can provide a sensory program that includes deep pressure and brushing. Between 8 to 10 months of age, you probably should start pushing for a special instruction teacher. This educator will use play therapy to begin teaching your baby sign language, concepts such as in/out and up/down, as well as choice-making and other cognitive skills.

When EI is working right, you will find that you have a team of encouraging therapists who are:
—showing you at a detailed level all of the amazing developments your baby is achieving.
—training your child’s neurological pathways in effective motor activity and motor planning.
—teaching you how you can incorporate basic skill development into your baby’s everyday routines.
—teaching you how to provide your child with motor training, and sensory and cognitive experiences and that will help him develop constructive life skills.



EI is not about pushing your baby to the next big milestone, it is not about comparing your child to others, and it is not about making you feel inadequate as a parent. If you are experiencing those things, it may be time to consider some changes to your child’s team.

Your Turn
When did you start EI and what services did you start off with? What have been the pros and cons of EI for your family?

A Bevy of Boy Beauties

Remember William from last month’s birth announcements? Well, his mom Tracy was kind enough to send us a picture of him. Isn’t he adorable?



Andrew
Nykki and Amy have been blessed with a son, Andrew. Check out Nykki’s blog, Past The Apple Orchard to see lots of pictures of little “Roo”.




Curtis
With great joy, Josh and Berit announce the birth of their son, Curtis. BabyBee can be found hanging out and looking darling on the Beary Bee blog.




Jack
Angi and John are delighted to introduce their first child, Jack. He is the star of the show over at Life in Color.




John
Meg and Dan welcome a beautiful new son, John. He joins brother Danny and sisters Maggie and Emily. He's not on the Web yet, but mom sent a picture so that we can oooh and ahhh over him anyway.






Owen
Andy and Ashley are honored to announce the birth of their first child, Owen. You can let Owen completely charm you at My Little Peanut.




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.

Stand Up

As a new parent to a baby with Down syndrome you learn fairly quickly that the world isn’t always the kindest place to raise kids. There are lots of things out there that hurt our feelings, and our children’s sense of worth.

This brings out the mama and papa bears in us and we become advocates and educators. We want the whole world to see our precious children through our loving eyes. That is why so many of us blog and make use of other social media.

And right now we are big news. We are working hard to eradicate painful insults by letting people know that it hurts and that it is unacceptable, and immature. The culture around us is rumbling with fallout from Rahm Emanuel’s highly publicized indiscretion. It is the right time to stand up and be heard.

Please head over to Oz Squad and sign the letter written to educate Sarah Palin on the best way to fight for our children. She has the speaking platform we need and we have the voices she can use.

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.)