Communicator 2012
 
More Alike_____________________________________________________
The NDSC Communicator   
______________________________________________August, 2012
in this issue
Back to School!
Watch Recorded Sessions from Convention
Continuing to Advocate
Down Syndrome News
Filling the Gaps in the Map
And Another Thing or Two
Back to school, back to routine
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Labor Day is just a couple of weeks away and for most American families that means school will be starting soon. It's time to regroup from your vacation, stay-cation or "Causecation", where fun prevailed and schedules were laid-back to nonexistent. Many (most?) of us relax the rules a little bit and get away from the routines that make life manageable during the school year.

 

Predictability is important for kids (and adults) with Down syndrome. Friday night is pizza night, Good Luck Charlie comes on at 6:30, and on Saturday we can rent a movie! Some things you just don't mess with.

 

Easing back into "school mode" is much easier than going cold-turkey, and by planning ahead it can be nearly painless. A week or two before school begins, start getting the kids to bed ten minutes earlier and waking them ten minutes earlier each morning until you have reached the school time routine. Work backwards -- if bedtime is 9:30 and your child showers at night, have him begin the process at 9:00 to allow enough time for personal hygiene to be completed before bedtime. Also, if soda or any product containing caffeine was allowed over the summer, start eliminating it and restrict video games or TV, a half hour before bedtime. These steps will help your child go to sleep more easily. Other ways to induce drowsiness include drinking a small glass of milk, soft lighting and a bedtime story or soothing music or sounds.

 

In the morning work backwards again. If the bus comes at 8:30 and it takes your child 45 minutes to wash his face, brush his teeth, get dressed and eat breakfast, then wake him at 7:45 or earlier to eliminate a stressful, rushed morning. It is helpful to pick out clothes the evening before, thereby avoiding that blank stare into the closet for five or ten minutes. And go ahead and get the book bag ready for walking out the door with all homework, signed papers, gym clothes, etc. 

 

If you live in one of those areas of the country that already started school, you've already got this down! But for families whose summer is just starting to wind down, get ahead of the curve and ease into the new school year.

Opportunity to Learn from NDSC Convention ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~  

Play Content We have a terrific line-up of plenary and workshop sessions on video, recorded from our 2012 convention, just waiting for you to register and watch at your convenience.

  • Do you have concerns about speech and language in your baby with Down syndrome? There's a session with Libby Kumin.
  • Do you have a school age child with more complex needs - medical and/or behavioral? George Capone leads a session for you.
  • Are you worried about aging and Alzheimer's? Download Wayne Silverman's workshop.

With 17 recorded sessions, we know there's something here for everyone. And if you don't need it right this minute, you might just find what you need when something pops up in your life a few months from now. Check out the full list of recorded sessions here: http://convention.ndsccenter.org/wp-content/uploads/2012/08/CH-RecordedSessions.pdf 

 

Just $35.00 for NDSC members, $70.00 for non-members, you'll have access to these recordings, as well as the printed handouts from each speaker, until June 1, 2013. It's an amazing opportunity to learn from the best, right in your own home.

Continuing the Work from our Day on the Hill ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~  

We've heard from many of you who attended our Advocacy Day on the Hill, wanting to keep the momentum going, and are wondering what more you can do. And we've heard from others who missed the opportunity to participate in Washington, DC, but still want to be part of the advocacy picture. What can you do? Here are some tips from NDSC Governmental Affairs Director, Susan Goodman:

NDSC Day on the Hill  

  • Build relationships. Contact your Representative and the Senators in your state in their home offices.
  • Get NDSC Action Alerts and take necessary action.
  • "Like" our NDSC Governmental Affairs Facebook page.
  • Follow us on Twitter at @policyupdates.
  • Call your Senators or Member of the House of Representatives when timely action is needed.
  • Use social media to spread the word.
  • Write a letter to the editor.
  • Invite your Senators and Representative to school, work site, or supported living setting. 
  • Attend a Town Hall meeting.
To borrow from Justin Dart, "father" of the Americans with Disabilities Act, "Advocate like your life depends on it. Because it does."
Down Syndrome News on our Website
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If you're an NDSC member, you get the hard copy of our newsletter in your mailbox. It's a great resource - one you can read at your leisure. But it's tough to share it with your friends in that format. Here it is in an electronic version, so you can email it to your extended family, teachers, therapists...anyone who would benefit from learning a little more.

 

The latest issue starts with a proud sibling story and ends with everything you ever wanted to know about constipation, but were afraid to ask. And in between you'll find awesome articles about prenatal diagnosis and self-determination. Take a look! Be sure to check out our past issues and articles, too. There are many that will be helpful this time of year. For example, you might want to read Libby Kumin's article on "Language Skills for Classroom Success" in Issue 2 from earlier this year.

Working to Fill Those Gaps in the Map

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Gaps in the Maps map~

Were you in a "Gap" when your child with Down syndrome was born? Help us keep other parents from falling into a Gap area. This collaboration between NDSC, DS Affiliates in Action and the NDSS is committed to ensuring that all families have access to information and support from a local Down syndrome parent organization when they need it. 

  

Take this survey to tell us where you live and where your parent organization is located:

http://www.surveymonkey.com/s/gapsinthemaps

Questions? Contact director@dsaia.org

And Another Thing or Two (or Three...)
 
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1. Share the NDSC Facebook page with your child's teacher, employer, or support person. 

2. Add a PicBadge to your Facebook profile picture.

3. Remind your friends about the More Alike Than Different message by posting a link to the NDSC YouTube channel on your Facebook page.

4. Volunteer for the parent organization at your child's school for any job you feel comfortable with: hospitality, newsletter, room parent, special needs committee, school dance. They need your help!

Contact Information
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phone: 800-232-6372/770-604-9500; email: info@ndsccenter.org
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