TIPS FOR SUMMER LEARNING?

Over the next few weeks I will be sharing Courtney's progress using the BiPAP machine and some fun & creative ways we keep learning fun through the summer months.

In working with Courtney I have always supplemented her school and therapy efforts at home using a very organic way of learning. I truly believe that everyday is a day to learn.

So what are your tips, tricks or creative ways that you keep your child learning throughout the summer months.

email them to me @ 

franklincountyds@yahoo.com 

and I will post it along with any pictures you email.

thanks!

shawn

NATIONAL DOWN SYNDROME SOCIETY IDEA NATIONAL SURVEY!

The deadline for the IDEA National Survey project, a survey of whether the rights of students with disabilities and their parents are protected, has been extended to July 12, 2011. One of the main reasons for the extension is to get more parents of students with intellectual disabilities to respond. It is especially important for parents to answer the questions about assessments, so it can be determined whether the type assessment seems to be affecting placement and access to the curriculum. If you haven’t already completed the survey, NDSS urges you to do so. The survey and more information about it can be found at http://www.ideasurvey.org  



The survey is sponsored by the National Down Syndrome Society, National Center for Learning Disabilities, Autism Society of America, Autism National Committee, and The Advocacy Institute. It seeks input from parents, self-advocates, and attorneys and advocates who work with parents regarding the major issues in special education advocacy, including IEPs, Child Find/Evaluations, and Due Process/Litigation. The survey also examines whether parents are treated as equals in the process and whether their rights are protected

There are surveys for all community members: Parents of children with disabilities, Attorneys, Advocates, Educational Consultants, other Professionals and Self-advocates (people with disabilities)

 

The results will be used to write a report describing the special-education advocacy experiences that parents, self-advocates, and professionals have, and describing their views of the degree to which parents are involved in the process as equal partners.

http://www.ndss.org

COURTNEY, SLEEP APNEA & DOWN SYNDROME

(Courtney sleeping with her Barbies & cell phone)

Our daughter Courtney has been diagnosed with obstructive sleep apnea (OSA) (blockage of the airway, usually when the soft tissue in the rear of the throat collapses and closes during sleep). 


I have been researching sleep apnea in children with Down syndrome to better understand the effects that it has and wanted to share some facts and Courtney's sleep apnea story.


Courtney has NEVER slept through the night in 12 1/2 years. While she may not always get out of bed, she is still restless, snores, sits up, changes positions several times a night and gasps for breaths. Courtney had her tonsils and adenoids removed at the age of 5 then this year she had her adenoids removed again because of regrowth. 


Courtney also is very tired during the day and has trouble focusing on tasks. She has also been exhibiting times of confusion and having difficulty making decisions. Irritability has also been an issue. 


After 2 sleep studies at Children's Hospital Courtney has been diagnosed with OSA. Courtney will be using a BiPAP machine to treat OSA. A BiPAP machine allows the air that is delivered through the mask to be set at one pressure for inhaling and another for exhaling. This makes BiPAP much easier for users to adapt to and these dual settings also allow more air in and out of the lungs.

Here are some facts:

Sleep Apnea Problems in Children with DS

It has been said by some experts that 100% of children with DS have sleep apnea. But studies have shown that this is not the case. While the numbers are fairly high at 45%, not all children with DS suffer from OSA.

Obstructive sleep apnea can be caused by several different factors present in DS: the flattened midface, narrowed nasopharyngeal area, low tone of the muscles of the upper airway and enlarged adenoids and/or tonsils.

Why is this important? The first problem is that of the child not getting enough quality sleep and the behavioral effects that brings. Second, during sleep apnea, the oxygenation of the blood decreases. It has been shown that in children with DS and heart disease the low blood oxygenation causes an increase in the blood pressure in the lungs as the body tries to get more oxygen. This "pulmonary hypertension" can cause the right side of the heart to become enlarged and other cardiac complications can follow.

As stated above, DS children tend to have poor tone in the muscles of the upper airways which lead to the tongue relaxing back into the airway thus causing an obstruction. Enlarged tonsils and adenoids alone can create an obstruction but when the issue of a flaccid tongue comes into play, then a more-serious obstruction may occur.

Children with DS may also have larger than usual soft palates that usually do not create obstructions but tend to cause snoring which is also a problem. When a child sleeps, their brain goes to sleep in different stages. A deep refreshing sleep is cycled in and out throughout the night but can be disturbed by the noise of snoring. This, or any noise, puts the brain in an “on notice” mode therefore inhibiting the ability to achieve refreshing and nourishing sleep. The child appears to sleep well but the brain never actually gets the rest it needs to function at peak performance. 

Does your child have sleep apnea and does the CPAP or BiPAP machine seem to help?

(I will be updating Courtney's progress using the BiPAP machine.)

Here are some links to sleep apnea resources and information:

http://downsyndrome.nacd.org/sleep_apnea.php

http://www.stlouischildrens.org/content/greystone_500.htm

CONGRATS TO RIA & BILL!

Bill & Ria recently embarked on a mission to raise awareness and research funding for the +15 campaign. (The +15 campaign (through the Down Syndrome Research & Treatment Foundation) funds research to improve learning, memory & speech for individuals with Down syndrome.)

Bill & Ria raised $2211 for campaign putting theta fundraising efforts in 1st place and winning an iPad that will be donated to their son Matthew's special needs class.

Bill & Ria raised monies through yard sales, pretzel sales & donations with the help of wonderful volunteers.

One person can make a difference!

Lilliespad.com has some great videos to see children using the iPad and how it is a great resource for learning.

iPad Help is a list of resources for parents to seek funding for an iPad for their child.

JULY 7 - MOMS NIGHT OUT!

(In lieu of our Monthly Parent Meeting!)

MOMS NIGHT OUT!

THURSDAY - JULY 7th

6:30 PM 

VALLARTA MEXICAN RESTAURANT 

1555 DENMARK RD

UNION MO

Leave the kids home with the husbands and let's have a little fun!

Please RSVP.

Shawn Sullentrup

636-744-3762

franklincountyds@yahoo.com

PARENT MEET & GREET PLUS TYLER'S GOING AWAY PARTY!

Last night was such a great time!

I loved getting to meet our newest moms and babies! All girls and all had bows in their hair which of course I love little bows unfortunately Courtney is almost 13 so she does not like the bows anymore. :(

I want to thank the moms for coming and bringing the little ones out to wish Tyler good luck in Florida.

I can't wait to get together again. 

And stay tuned for next month. 

Things will be a little different since we are having a MOMS ONLY night!!!