|
Piedmont
Down Syndrome
Support Network Newsletter
(Summer 2005)
"On
a Roll"
The
PDSSN is experiencing what the sports world calls
the "big mo." Momentum is a wonderful
thing, whether you are a politician, a stockbroker,
or a small organization of parent volunteers in
the Piedmont. From the successful 2005 Buddy Walk
to the regular gatherings at Mothers Night Out,
we seem to have hit our stride.
People
like to be associated with this momentum, evidenced
by the recent offer from Church and Rod who asked
to sponsor a bike ride and golf tournament to raise
money for us. (see advertisement). This spring the
Wake Forest Disability Awareness Committee gave
the $1,438 proceeds from their Meg Hudson Annual
Fund Raiser to the PDSSN. When "Down Syndrome
Buddy Walk" is mentioned in the non profit
board meetings of the Triad, people now stop and
listen.
It
hasn't always been the case. It has taken five years
for us to anticipate that we might see our Buddy
Walk T-shirts anywhere we go. There weren't always
enough gals who would or could take time to get
together for a dinner. The guy gatherings were once
not even a consideration. Play groups never came
to fruition. We never had to worry about the size
of a location for our social gatherings in the early
years.
But,
there are other signs of promise. Marcia Van Riper,
nationally known speaker has offered to come to
share with us her research on Down syndrome (September
16th). Our own Tamison Jewett, WFU Geneticist and
Advisory Board Member has committed to presenting
annual research updates for us. The first annual
update is scheduled for January 20, 2006. (Did you
know that the first "Down syndrome mouse"
has now been created to use in research? Why was
it so hard and what can it mean for our scientists?)
Bailey Liipfert and Rebecca Smitherin have provided
us the leadership in acquiring our 501c3 status.
We are nearly ready to fly on our own!
Mostly,
however, our momentum has come from within. The
indomitable Sherry Jeffries and Denise Collins have
picked up a torch lit by their predecessors. Andrea
Rice has found new ways through our brochure, poster,
and billboard to help us visualize and accentuate
our mission and importance to the community. The
PDSSN joined with three community groups to offer
the monthly BEES Parenting Program to Piedmont parents
of special needs children. The BASICS 9-week college
prep program kicked off on June 13th. This momentum
can only come from sustained enthusiasm for what
we stand for and the importance of our network to
future generations of families with Down syndrome.
We always need volunteers. We always need more families
to attend the national and regional conventions.
We always need you to help find, celebrate and nurture
new members.
The
next Buddy Walk is 14 months away (October 7, 2006).
Help us keep the momentum - come to the social on
Saturday August 20th, consider running for the openings
on the advisory board, join the moms and dads gatherings,
get involved. Keep us "on a roll."
Bill Donohue
PDSSN Advisory Counsel Chair
BEES
Parenting Program
Being
a parent is the most important work we'll
ever do - and sometimes it does feel more
like work than like fun! Join us for these
free sessions to share challenges, ideas,
and learn new strategies! Programs are held
the 4th Thursday of each month (Jan - Oct)
6-7:30 in the CenterPoint Board Room at
4045 University Parkway. RSVP to Liz at
896-0950 x 122 to register and request child
care for young children. (A light supper
will be served).
Sponsored
by the PDSSN, CenterPoint, Parents Together,
and Charles A. Hines & Son.
We
have four sessions left for this year. If
you have not been able to attend, mark your
calendar for the following dates. If you
have please keep coming to share both your
challanges and ideas. You will be glad you
did!
Speakers:
July 28th - Don Goldstein, Ph.D.
August 26th - Lisa Hauser & Caroline
Steele
September 22 - Rebecca Royals
October 27th - Deborah Maddocks
PDSSN Parents Night Out
mark your calendars
Marcia
Van Riper, international speaker, will present
her research on Families Living with Down
Syndrome on Friday, September 16 at Allegacy
off Stratford Road. Many of you met Marcia
at our Allegacy sock hop. PDSSN is making
this program available to the public so
encourage your child's teachers, service
coordinators, and health care providers
to attend. Dinner and socialization between
5 and 6:30 PM (from a local Deli for a small
charge). Program from 6:30 to 7:30 followed
by questions. RSVP to Deborah Woolard (woolard@triad.rr.com
or 778-9249) if you plan to attend the program
or if you want flyers. Contact Patti Varner
(PVarner1@triad.rr.com) to order food.
*Infant
Toddler credit is available for professionals
working in the Infant Toddler Program.
CFAC
Openings
Openings are available on the Consumer and
Family Advocacy Counsel and need to be filled
as soon as possible. This advisory board
to CenterPoint Human Services is in the
middle of quality assurance for people with
Developmental and other disabilities. It
meets bi-monthly with dinner provided.
Contact Bill Donohue at 922-0530.
|

|
Noah
Drum
|
June
2
|
| Jenna
Boyer |
June
11 |
| Jesus
Sandoval |
June
14 |
| Miranda
Hicks |
June
16 |
| Morgan
Bines |
June
17 |
| Nathan
Bryant |
June
18 |
| Kendra
Severt |
June
25 |
| Noah
Lilly |
June
29 |
| Hannah
Newton |
July
4 |
| Jessie
Reismman |
July
4 |
| Seth
Noles |
July
5 |
| Malencia
Spring |
July
5 |
| Nathaniel
Barlett |
July
8 |
| Jessica
Wakefield |
July
9 |
| Christopher
Martin |
July
10 |
| Imani
Leak |
July
11 |
| Rachael
Owen |
July
12 |
| Yuinlei
"Hope" Chia |
July
16 |
| Ashlyn
Rippey |
July
24 |
| Chase
Smothers |
July
25 |
| Marshall
Britt |
July
27 |
| Spencer
Neill |
July
28 |
| Jennifer
Ferruzca |
Aug.
1 |
| Annissa
Davis |
Aug.
3 |
| Brooke
Sprinkle |
Aug.
3 |
| Rachel
Rushing |
Aug.
6 |
| Kevin
McGee |
Aug.
13 |
| Haley
Cardwell |
Aug.
14 |
| Trisha
London |
Aug.
15 |
| Leah
Godaire |
Aug.
16 |
| Rebecca
Mustin |
Aug.
18 |
| Victoria
Wilson |
Aug.
25 |
| Dawlton
Lawson |
Sept.
1 |
| Sophia
Smith |
Sept.
15 |
| Alejandra
Chavez |
Sept.
19 |
| Evan
Jeffries |
Sept.
19 |
| Julio
Chevez |
Sept.
25 |
| Stephen
Reeves |
Sept.
26 |
Congratulations
to Bill Donohue the new Executive Director
of The Special Children's School.
|
| Sleep
Apnea
Obstructive
Sleep Apnea (OSA) is a disorder characterized
by repetitive partial or complete collapse
of the upper airway during sleep. The causes
can be structural, functional, or a combination
of the two. Some of the symptoms of sleep
apnea syndrome are excessive sleepiness, noisy
breathing or snoring during sleep, irregular
body positions in sleep, apneic episodes (breathing
pauses), choking or gasping in sleep, tiredness
upon awaking, and daytime mouth breathing.
Children
and adults who have Down syndrome are at increased
risk for OSA with some estimates as high as
65% with severe problems in over 15%. A small
airway, short palate length, small mandible,
and low muscle tone may contribute to the
syndrome. Sleep disorders can contribute to
decreased oxygenation of the blood, hyperactivity,
poor school performance, and cardiovascular
disease.
A
sleep study (polysomnography) is used to diagnose
sleep apnea. This is an overnight study performed
in a sleep study lab located in a clinic or
hospital. Studies have shown that parent report
is not a reliable screen to identify children
who have sleep apnea. Because of the high
incidence of sleep apnea in children with
Down syndrome some ENT's recommend OSAS testing
between the ages of 3 ½ and 4 years
of age for all children with Down syndrome.
This is presently not a recommendation of
the Down Syndrome Medical Interest Group.
Occasionally a Cine MRI will be required.
This procedure takes sequential airway photos
during sleep and is available only at a few
sites.
Treatments
include continuous positive airway pressure
(CPAP) and surgical procedures. CPAP is administered
by mask during sleep and keeps the airway
from collapsing. The most common surgical
procedure to correct OSA is adenoidectomy.
Children who have adenoidectomy have an increased
incidence of regrowth if the procedure is
performed before age two years. As many as
40 to 50% of children have resolution of symptoms
following tonsillectomy and adenoidectomy.
Other surgical procedures include radiofrequency
reduction to the base of the tongue and genioglossus
advancement.
If
your child has symptoms of sleep apnea consult
your pediatrician or ENT.
Deborah Woolard
|
The
PDSSN Annual meeting & Down Syndrome Update
January 20, 2006
Dr.
Tamison Jewett, geneticist & PDSSN Advisory
Counsel Member, will present the first Annual
Down Syndrome Update at the WFU Medical Center.
PDSSN parents & interested community members
are welcome to attend this interesting program
so mark your calendars. The PDSSN Annual meeting
will take place immediately following Dr.
Jewett's presentation.
All
officers and all Board members will be elected
at this meeting. Members presently holding
these positions can be re-elected but we will
have an official election for ALL positions
as we begin our Corporation as a 501c 3.
If
you are interested in running for an office
or have questions, please notify Sherry Jeffries.
If you are interested in serving on the Board
of Directors or have questions, notify Bill
Donohue. Please notify them if you are presently
serving and want to continue or if you are
not holding an office but are interested in
doing so your name can be placed on the ballot.
Remember
you must be a registered member to vote or
serve as an officer or board member. Dues
can be paid at the annual meeting ($10) for
those that are renewing and can be paid now
($5) for those wishing to join. If you have
questions about your membership status you
may contact Kristen Faulkner, who is responsible
for membership.
Second
Chance Golf Tournament and Benefit Ride Fund
Raiser - July 30, 2005.
Net
proceeds of both events go to the PDSSN &
Second Chance Boys Ranch. Please plan to support
this fund raiser.
Call
Chuck at 336-399-5401 for more information
about the golf tournament or Bill Donohue
to sign up for the PDSSN golf team. Call Rod
at 336-643-7203 for more information about
the motorcycle ride. Call Deborah Woolard
for volunteer assignments.
A
party will take place at County Line at 3:30
PM.
We need families to participate to show our
thanks for their efforts on our behalf.
| If
you would like a paper copy of the newsletter
mailed to your home, please email Helen
at pbcoffice@alltel.net.
We will be sending the newsletter via
email unless we hear from you! If you
know of others who want to receive the
newsletter they can sign-up on the website
www.pdssn.com |
|
PDSSN
Summer Family Gathering
Town & Country Pool (off Reynolda)
Saturday, August 20th at 4 PM
RSVP to Denise Collins at swimmerfamily@yahoo.com
or 923-2835
Pizza will be served
(The
pool is big enough for everyone!)
Pavilion, basketball, and tennis are also available
(Directions:
Off Reynolda Road turn into Town & Country on
Briarcliffe Rd. Go ½ mile and turn left on
Kingston Rd. Pool is immediately on left.)
Thanks
to the Wake Forest University Disability Awareness
Committee for donating the $1438 proceeds
of their Meg Hudson Memorial Fund raiser to
the PDSSN.
|
BASICS
"Beyond Academics Summer Introduction
to College Sessions"
BASICS
is a 9 week College Prep Program that is
being held this summer at Winston-Salem
State University. This program is designed
for young adults with developmental disabilities
who are interested in exploring a post-secondary
residential program: Beyond Academics. The
focus of the program is to enhance daily
living, social, residential, and leadership
skills while living on a college or university
campus. This summer program offers student
activities for skill development as well
as the opportunity to experience life on
a college campus to assist them in making
a decision about enrollment into the two
year program scheduled to begin Fall 2006.
|
PDSSN Newsletter
Helen Johnson, editor
PO Box 91
Pfafftown, NC 27040

|