Tag Archives: Down Syndrome

Resources for Infant Feeding and Oral Motor Concerns

stockphoto  toddler eating YAY

Quick Resources for Infant Feeding and Oral Motor Concerns: Down syndrome, Cerebral Palsy, High Tone/ Low Tone Concerns, or Tube Feedings

Contributed by Capital Area Speech Therapy Staff Speech Language Pathologist:

Dee Arp, MA.,CCC/SLP

The big day is here and you are ready to tell the world; you have just had a sweet little baby!  Then, other news arrives; the sweet little baby also has an unexpected diagnosis that might make it difficult to nurse, feed, or speak some day.  It’s a lot to consider.  There is the added context of having spent hours in preparation for this big day mentally and physically, not to mention the number of hours spent in delivery.  Next thing you know, there are countless appointments lining up with medical specialist after specialist.  Did you ever feel like tuning it all out?  Understandable!  Next comes information overload: What does this diagnosis mean for your baby?  What does it mean for the rest of the family? Will your child be on multiple medications forever? How can you help your child reach his or her best potential?  Breathe in; breathe out.

This post is here to help you find those breaths. It’s a gentle guide for you to some helpful, internet-available resources.  Explore them at your own pace. The hope is that the gathering of resources here will minimize your work in searching.  These sites are full of articles and treatment considerations as your little one develops early pre-feeding and feeding skills. These materials range in topic from the “stages of typical development versus disordered feeding/ oral-motor development” to “reasons why parent training with a speech-language pathologist is important for a baby having Down syndrome”.  Our therapists seek to help you be able to help your child.  We want you all to gain a strong, fighting chance toward realistic progress at home, as well as within therapy by increasing understanding. We encourage high value placed upon early intervention and prevention of further complications.

Resources 

One book resource is extremely helpful and worthy of first mention.  It provides parents (and professionals) with numerous checklists and orderly charts describing some of the various functional issues at hand.  It is a great guide through those earliest stages of feeding and oral-motor concerns.  It may even be a wonderful resource for your Pediatrician or Family Doctor as you enter this unexpected journey.  The book is titled, Nobody Ever Told Me (or my Mother) That! The author is Diane Bahr, a speech-language pathologist.

Here are some favorite internet resources that offer multiple recommended readings for a rich variety of topics related to infants having oral-motor and/or feeding concerns listed alphabetically:

  • Debra Beckman is a speech-language pathologist that instructs in the area of specific oral-motor interventions and has developed a specific assessment in this area. Articles cover a variety of topics including: cheek patterns, drooling, jaw & lip patterns, tooth grinding, and tooth patterns

http://www.beckmanoralmotor.com/index.php

  • Marsha Dunn Klein is a certified occupational therapist with the company, Meal Time Solutions. The articles include explanations of why its important to manage some of the sensory aspects of feeding as well as new ways to present food items to assist in these issues.

http://mealtimenotions.com

  • Suzanne Evans Morris is a certified speech-language pathologist. She and Marsha have written several helpful books together within this topic.  She is a part of a company called New Visions

http://new-vis.com/p-fym.htm

  • Sarah Rosenfeld-Johnson and Lori Overland are also two influential, certified speech-language pathologists in the areas of pre-feeding and feeding development. Lori actually offers a course geared toward Pre-Feeding skills in young children with Down syndrome.     http://www.talktools.com/resources/
  • Kay Toomey is a pediatric psychologist specializing in feeding disorders. There are several handouts included here to help determine when feeding difficulties may be out of the normal category.  Items such as, “Red Flags for Feeding Disorders”, and another one distinguishing between “Picky Eaters vs. Problem Feeders” can be found here.

http://www.sosapproach-conferences.com/about-us/about-kay-toomey#

Thank you for your time and interest.  Remember, just as babies learn to sit up before they stand, parents also go the processes of learning what is best for their children.  Take your time along the way and enjoy the process.

Advertisements

World Down Syndrome Day

Abby and Bailey
Today is a special day that we can help to raise public awareness and advocate for people with Down syndrome. World Down Syndrome Day is recognized on March 21 to symbolize the the extra 21st chromosome which causes Down syndrome.

Ways to support people with down syndrome:
Join you local buddy walk
Support a local nonprofit organization
Support Ruby’s Rainbow and help young people with Down syndrome fulfill their dreams
Wear lots of socks on World Down Syndrome Day!
LotsofSocksWeblink - big

Great blogs about Down syndrome:
Ellie’s Gift I love the blog post about how to teach young children about Down syndrome.
Down to Life
Noah’s Dad
Dear Tessa
There are many other blogs out there written by parents and other families members specific to Down syndrome.

For more information please visit the following websites:
Down Syndrome Association of Central Texas
Down Syndrome International
National Down Syndrome Society

Joy

Joy
by Christy McDonald

A year or so before I became pregnant with Bailey, our family was having {what seemed at the time} to be a never-ending string of bad things happening in our little world. The details aren’t important, other than it just seemed like there was one thing after another that made me wonder if we were ever going to experience happy times again. I was working for a woman who was a life coach and during team meetings she would ask us frequently to share one word that represented what we wanted in life. Joy. My word for months was joy. I just wanted to have more of a reason to smile, more of a reason to laugh, to not take life so seriously. It was just one of those times when what we needed was some good, old-fashioned joy.

Things settled down a bit, and circumstances improved here and there. I forgot about how deeply we had needed that extra joy in our lives.

Several months later, I was 18 weeks pregnant and we went to the perinatologist’s office for our 18 week ultrasound. While the 18-20 week ultrasound is useful for many reason, the only one that we ever thought would be applicable to us was to find out the gender of our baby. We went in to the appointment excited to find out whether we were having a boy or girl, and came out shell shocked, knowing we were having a baby girl, she had a life-threatening heart defect that would require open heart surgery when she was still a little baby, and more likely than not, had Down syndrome. To say that we had never contemplated that our child would be anything but perfectly healthy and or would have special needs is the understatement of the century.

We found out a week later that yes, our daughter did have Down syndrome. The rest of the pregnancy continued with frequent visits with the perinatologist as we had officially been moved to the rank of “high risk pregnancy”. We had visits with the pediatric cardiologist, pediatricians, etc, all in anticipation of Bailey’s birth. During the last few months of my pregnancy I remember thinking that our lives were about to be awful. I didn’t know anyone with Ds personally, and was thinking only of outdated, untrue stereotypes. I (now very regretfully) that any joy we had regained in our lives was gone for good.

When Bailey was born, we fell in love with the gorgeous little fighter of a girl that had just joined our family. She was the cutest, squishiest, sweetest little thing ever. Before she was born, we had decided to name her Bailey Joy, the middle name of Joy coming from our niece named Joy who had passed away a few years before.

Bailey spent a couple of weeks in the NICU before coming home. One of my favorite pictures of Bailey is this one – she was just a few days old and still in the NICU. And was already grinning this huge, infectious grin. That should have given me some indication of what was to come.
Bailey newborn
Eventually, Bailey came home from the NICU and we spent five months preparing her for open-heart surgery. Our job was to keep her away from viruses and help her to gain weight so that she would be big enough for the surgery. We fought for every calorie that entered her little body but finally, when she was 5 months old, it was time.
The morning of her surgery, she of course had no idea what was happening. We fought back tears as we waited for them to tell us it was time to hand our little baby over to the surgeons. Bailey’s infectious smile made the morning more bearable.
image002
She came through the surgery with flying colors, and thankfully now has a healthy heart.

After getting through the surgery and her recovery, life finally settled down and we were finally, finally, able to live a normal life without worry of calories and viruses and heart failure. We started plugging along and months went by.

One day as I was giggling yet again at a famous big Bailey smile I had a startling revelation that had not once occurred to me in all of the months that had passed since I was pregnant with her. Those years earlier when I was praying and hoping for more joy in our lives? We were given more joy – pure joy – to be exact, in one little bundle of smiley girl named Bailey Joy. When she smiles (which is often!), she smiles with her entire soul. People stop and comment on her smile – how her smiling at them was the best part of their day. That her grin lights up the room. That she was named so appropriately for her personality. That JOY describes her completely.

Bailey just turned three and is still turning heads with that big ‘ole grin of hers. She is just like any other toddler in that she throws tantrums (and her food, sippy cup, and anything else she can find), steals toys from other kids, and tells me “no!” when she doesn’t want to do something. And she is the answer to our prayers – perhaps the most unexpected answer to prayer we’ve ever had. We didn’t know years ago when we needed more joy in our lives that it would come in the form of a little girl with Down syndrome who would change our hearts and minds in the best way imaginable.
image003
When I was still pregnant with Bailey I spoke to a woman who has a son with Ds. She told me that she wished everyone could experience the joy of raising a child with Ds – that she almost felt sorry for those who didn’t get the opportunity to do so. Honestly, I was floored at her statement – I wondered how anyone could feel that way. But she was right. The joy that comes from raising a child with special needs is 100 fold what you give as a parent. We are truly blessed.

*******************

Christy McDonald, her husband, and three children live in Austin. They have a son, Taylor (7), daughter Abby (3), and Bailey (3). Abby, who also has Down syndrome, was adopted from Eastern Europe in January, 2013.
image004

For more information about Down Syndrome please visit the National Down Syndrome Society.