Monthly Archives: July 2016

Down Syndrome Enters a New Era

By: Dr. Peter Smith, Associate Professor of Pediatrics, University of Chicago

Editor’s Note: Through a partnership with the University of Chicago, developmental- behavioral pediatrician, Dr. Smith leads a new Neurodevelopmental Disability Clinic at Easter Seals DuPage & Fox Valley which provides support for children with Down Syndrome, ADHD or Autism, disabilities that may include complex medical and emotional issues.

Dr. Smith also leads Easter Seals DuPage & Fox Valley’s multi-disciplinary team including an occupational therapist, speech-language pathologist, developmental therapist, audiologist and parent liaison in the Medical Diagnostic Clinic. This clinic specializes in early diagnosis of young children.

Current Processes Are Not Working

Individuals with Down syndrome (DS) are living longer and healthier lives than ever.  There is consensus that complete information needs to be offered to all parents of children with Down syndrome (both pre- and postnatal) regarding the current experiences, health outcomes, lifespans, and quality of life for individuals with DS.  DS represents a dramatic “success story” and the lives of individuals with Down syndrome are improving in every way measurable.  Unfortunately, this good news is too often not being shared with new and expectant families.  Doctors are not prepared for this task and parents report frustration with the process.

Maggie_1.jpgOn the Cusp of Potentially “Game Changing” Therapies

In addition to the dramatic changes that have already occurred, DS as a clinical and research arena is on the cusp of developing even newer therapies that have the potential to improve cognitive outcomes.  Multiple research teams have protocols already enrolling study subjects.  For example, the team at the Jerome Lejeune Institute in Paris has an active study underway  that employs a combination of folic acid and thyroid hormone, targeting infants and primarily measuring cognitive performance during and after therapy.  Their preliminary work has shown significant promise and preliminary results might be released later this year.  Because of their early successes, there are ongoing efforts to mount a similar study here in the United States.  The NIH has recognized this new era and has launched an international registry (see https://dsconnect.nih.gov ).  However, this “breaking news” has not been widely disseminated.  Many worry that recruitment to these studies could be diminished due to the lack of awareness by primary care providers and the general public, which would slow the progress of the studies.

01_Lucas_Vasquez.jpgA Growing Number of States Have Addressed the Issue: Including Illinois

Because of the lack of general knowledge of both the dramatic improvements in the lives of individuals with DS and the emerging clinical trials in DS, a coalition lead (of course) by family support organizations has emerged.  They have initiated a new “information rights” movement that includes clinicians, policymakers, legislators, and researchers that has worked to enact new state laws addressing the problem of misinformation.  The first to successfully pass legislation was Massachusetts: in 2012, a coalition helped to pass a state law, mandating that clinicians provide accurate information and Referral to parent support organizations.  Most recently, Illinois, passed unanimous legislation in 2015, which proves that this is truly a bipartisan issue.

To learn more about our specialty clinics including the Medical Diagnostic Clinic, visit eastersealsdfvr.org.

Advertisements

A New Perspective about the Playground

By: Bridget Hobbs, PT

Summer is finally here and your little ones are asking to go to the park.  So, pack a few snacks, slather on the sunscreen and take advantage of this free way to build confidence, make friends and gain gross motor skills at the same time.

Children learn best through play-based experiences and exploring the playground is great way for children to refine their gross and fine motor skills.  Here are a couple ideas for parents and caregivers to engage their children at the park in order to build not only bonding and fun, but to also build muscle strength, endurance and gross motor skills.

Here are some new or different ideas to incorporate to your little one’s playground fun:

Playground-28.jpgClimbing up the slide

As a child, you were likely told to just go down the slide.  Of course if there are children waiting to go down the slide, climbing up it is not a good idea.  However, if the park isn’t crowded, help your child bear walk (on hands and feet with bottom in the air) up the slide.  Doing this builds great core strength as well as cross-body coordination skills.

Using the dividers as balance beams

Playground-20.jpgThere are often railroad-tie type of dividers that divide the grass from the wood chips/foam surface under the playground equipment.  Challenge your child to go across these as they would a balance beam.  They can experiment with going forward, backward, side-stepping and even doing toe taps to the ground each step.  This activity helps with control of leg and core muscles as well as coordination skills that your child will use in gym class and on sports teams in the future.

Use hills to your advantage

If you participated in track or cross-country in high school, you know that training on hills was a vital component to the big picture of a race.  Make hills fun for your little one by rolling down them like a log to help with development of the vestibular system.  You can also really challenge them by bear walking or crab walking up or down the hill.

Don’t avoid the climbing wall

Playground-45.jpgChildren as young as toddlers can enjoy the climbing wall with help of their parents.  Even if you have to support their body, children learn motor planning and sequencing by deciding where to best place their hands and feet to navigate the wall.   A bonus is that the small muscles in the hand are strengthened by grasping the holds, which can lead to improved ability to write and play ball sports in the future.

There is a lot of research that clearly links play with brain development, motor and social skills.  Playgrounds provide different textures, sensory experiences and motor planning opportunities for children to help build their development.  So, think outside the box the next time you are at the park with your child and try to incorporate these different ways to assist with their development.

For more information on physical therapy and play based therapy services at Easter Seals DuPage & Fox Valley visit our website.

*Above images by Molly Gardner Media

 

Just Breathe

 

By: Jessica Drake-Simmons M.S. CCC-SLP

The popularity of using breathing exercises with children is on the rise.  And, with good reason, because they work! When we focus on breathing fully and deeply, we move out of our sympathetic nervous system (fight or flight) and into our parasympathetic nervous system (relaxation and receptivity).  Breathing exercises are effective for the frustrated 4-year-old, the anxious teenager, the overwhelmed parent and the stressed out teacher.  There are an abundance of fascinating studies that have found that our body posture, facial expression and breathing, send messages to our brains about how we are feeling.  Therefore, we can take control of our feelings by doing something different with our bodies.

Research has found that something as simple as mindful breathing can have the following benefits:

  1. Increase our focus
  2. Promote instant feelings of calmness
  3. Regulate our mood
  4. Increase our confidence
  5. Increase our joy

Some families find it helpful to have mindful breathing integrated into their regular routines.  For example, every time they are sitting in the car or at every trip to the bathroom they will participate in a simple breathing exercise.  Taking a few minutes at the beginning of an activity can also be an effective way to get a child in a calm, ready to learn state or to reduce stress in anxiety provoking situations.  Breathing exercises can also be an effective way of curbing a looming behavioral meltdown.

When teaching a child a breathing exercise, choose a time when the child is ready to learn.  If a child is in an anxious or frustrated state, he will have difficulty processing the directions.   Make the learning fun and multi-modal.

breathe blog
Image from theyogakids.com

Use a real object, picture or imaginative visualization to teach a breathing exercise.  I may show my little friend a stuffed bunny and ask:  “Do you know how bunnies breathe!?  A bunny takes 3 quick sniffs through its nose and then blows one deep breath through its nose.  I wonder if you could breathe like a bunny?” or “Imagine you had a balloon!  What color would your balloon be?  Let’s take a biiiiiiiig breath through our nose and blow the air out of our mouth into our balloon.  Wow, you made your balloon sooo big with those 3 big breaths!”

Here are my favorite, kid friendly, breathing exercises.

breathe blog 2

For more information on Easter Seals DuPage & Fox Valley visit our website.