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Piedmont
Down Syndrome
Support Network Newsletter
(Winter 2005)
PDSSN
Advisory Counsel Breaks New Ground
By
Bill Donohue, Chair
The
rich but syncopated history of area parents supporting
children with Down syndrome and their families has
continued its evolution the past few months. With
two meetings behind them, the PDSSN Advisory Counsel
seems to have "found it's legs."
When
the membership of the PDSSN approved the notion
of an advisory or "overseer group" to
the organization, there were a lot of unanswered
questions. Our first meeting was exhausting. For
four hours we picked through the by-laws, jousted
philosophically about expenditures, all while getting
to know one another. What were we doing and where
were we headed? What guarantees were there if we
spent the money that it could be replenished?
New
to the dynamics and key to the concept of "advisory"
were the professional friends and experts who joined
we parents. Attorney Bailey Liipfert who has written
wills and estate plans for special needs families
for years, Dr. Tamison Jewett who as a geneticist
knows almost all of us, Dr. Will McGuirt whose ENT
expertise has looked inside most of our families,
and Diane Hurlbut, whose EI expertise had benefited
numerous families in our group - ALL- bring time
and immeasurable talent to our group. Along with
the medical, developmental, and legal credentials,
they brought reasoned distance and new perspective
from other boards and experiences, helping us through
our myriad of challenges. Added to the parent and
professional mix is new Counsel member Richard Allen,
whose perspective as a young adult with Down syndrome
may be the most important ingredient we have.
The
end result was an infusion of the organization with
new membership definitions and some money. Money
doesn't solve all problems, but successful Buddy
Walks helped pave the way. Recent posters and billboards
celebrating the capabilities of our kids are a combination
of energetic committee leadership from Andrea Rice.
Having a great summer event hosted by the Newtons
and having 100 people sign up for the Fall gathering
with the Varners was testimony to our organizational
zeal. The new sunshine committee has provided support
along with a basket of goodies to several families
of hospitalized children.
But
before we could truly ratchet up the organization,
we needed to do some serious soul searching about
who we are. The result was action on a topic we
have discussed for years, the independent, not for
profit, 501 (c) 3 challenge. We've taken the step
and expect in 12-18 months to achieve that status.
It will mean lots of things to the Counsel, the
general membership, and to the officers. We will
need to obtain an official address, mailbox, endure
audits, and obtain insurance as we begin our liberation
from The Arc and Enrichment Center. And, of course,
there will be unknowns as well.
Possibly
the most challenging issue for the organization
and the counsel has been the "give back."
How to best allocate the budget, protect the reserves
and perpetuate key fund raising for the future:
that was the question? The end product was an $8,000
allocation for medical, enrichment and educational
needs. We put an "F" on it for funds and
called it our MEEF policy. A person with Down syndrome
or their family may apply for these monies, not
to exceed $350 a year. They must be "active,"
registered members. This "activity" is
the carrot and the stick to perpetuate the organization.
You put in, you take out. So far, only two families
have sought reimbursement. Help us by helping yourself.
Applications are available on our website or by
contacting an officer.
Parallel
to the MEEF fund was a $3,000 gift to Triad First
in Families restricted to persons with Down syndrome.
This hard earned Buddy Walk money would help those
families with Down syndrome who have limited incomes
and who may or may not be active organizational
members, but still deserved our support.
To
the relief of all present, the second of our quarterly
meetings on election day lasted half the time. The
notion of a Counsel was carefully evaluated to NOT
dominate officer decisions or manage committee work
from on high. Rather, it was to build an organizational
climate, set a budget, and breath life into our
organization with support and advice.
Are
we smooth sailing at this point? No, not really.
But the wind is no longer in our face and we have
movement. The April 16 Buddy Walk is still the most
important date on our calendar and your role as
"active" members will still make or break
who we are. We count on every person who reads this,
and many who don't, to show up and support our kids
and our families; to spread the word; to keep the
parent notebooks, the billboards, the brochures,
the family networks, hospital sunshine visits and
the rest of our activities alive and well.
Our
officers and Advisory Counsel need your ideas and
advice as we chart the new waters. Please let us
know how we are doing and where we might go. And,
as always, sign up and bring 100 of your family,
friends and favorite merchants to the Buddy Walk
April 16!
 HIPPOTHERAPY
WHY A HORSE?
The
movement of the horse's pelvis is multi-dimensional
and very similar to a human's pelvic movement,
within centimeters, at the walk. This movement
helps facilitate a normal gait pattern for
patients with ambulation challenges. The
sensory input from the horse impacts the
patients vestibular, tactile and proprioceptive
systems which provide a foundation for the
development of sensory and motor abilities.
The results include normalizing of muscle
tone, improved posture and midline orientation,
improved head, neck and trunk control, improved
body awareness and balance. Often patients
with Cerebral Palsy, Down Syndrome, Spina
Bifida and other developmental disabilities
have balance, coordination, postural, mobility
and speech deficits. These challenges can
be addressed by a therapist (Physical, Occupational
or Speech) who has special
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training
to use hippotherapy as a tool in their practice
to achieve goals and functional outcomes.
A therapeutic ball is a tool often used in
the typical therapy setting. The horse is
used just like a therapeutic ball, it just
happens to be a lot more fun. Although Hippotherapy
is fun, it is not therapeutic horseback riding
or a pony ride. It is part of a treatment
program used to attain functional outcomes
for the patient. Hippotherapy (hippo is the
Greek word for horse), takes the patient out
of the clinical setting into a relaxed yet
stimulating natural environment to help them
meet their therapeutic goals.
For
more information, please call
Kathylyn Barnhill, PT
Registered in Hippotherapy
Kids In Motion Therapy Services
McNeely Pest Control
336-924-6434
Hippotherapy
services provided at Riverwood Therapeutic
Riding Center, Tobaccoville, NC.
"There's
something about the outside of a horse that's
good for the inside of man." Winston
Churchill
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 April
16, 2005 will be here before we know it! .Our Buddy
Walk is 9 AM - 12:00 noon at Tanglewood Park. We
need each and everyone of you to participate and
help make this year a successful event. Each member
is encouraged to get involved this year whether
it be a small task or a very big one. NO TASK
WILL BE UNNOTICED AND IT WILL TAKE EACH ONE OF US
TO MAKE THIS A SPECIAL DAY FOR OTHER PARENTS, OUR
CHILDREN, RELATIVES, AND FRIENDS WHO COME OUT TO
SUPPORT US.
Denise
Collins (923-2835) and Sherry Jeffries (993-4751)
are the CO-Chairs of this years Buddy Walk. . They
will be contacting those who have signed up for
a committee. If you haven't signed up, please call
either of these ladies to volunteer!
You
can also help by asking sponsors to donate money
such as your MD office, places you frequently go,
Dentist offices, etc. Check out our web site to
see a list of this year's sponsors.
Oh,
What has she done now!
 April
Michelle is now 26 years old. She is out
on her own now (Kind of….) as we refer
to her living in a group home setting. She
has found her independence and a place that
we have always hoped for her. April is an
early riser and always the first one dressed
and ready to start her day. She attends
the Enrichment Center and participates in
daily activities such as music, dance, weaving,
art, and community volunteer work. She attends
Wednesday night church suppers and church
on Sunday. She always looks forward to the
monthly dance on Friday night. April likes
to play putt-putt, go bowling and swimming.
She just likes to be on the go. During her
down time she will work on a 500 piece puzzle
until it is completely finished. She looks
forward to bingo game night at the group
home. She has made many new friends and
never forgets her old ones.
Raising
April has been quiet a challenge. Ever since
she learned to walk at 25 months, it was
almost impossible to keep up with her. She
was quick and was always trying to escape.
We would have to scheme up new ways to stay
one step ahead of her.
 Her
first week at Special Children's School
the staff had to put a new lock on the gate
because April was able to open the existing
one. We installed a six-foot fence for our
backyard. The first day she scaled right
over the top and was so proud of herself.
She was always trying to climb out windows
and sneak out during the night. One night
she decided to take a ride on her hot wheel
around the neighborhood. At four o'clock
in the morning, our doorbell rang and there
stood April barefoot and in her nightgown.
I slept outside her bedroom door many nights
after that.
While
at school, April met a very special friend.
His name is Andy. They were very compatible
because Andy was very active like her. In
this picture, Andy is asking April if she
wants to play. Even though Andy has moved
to Greensboro and they do not see each other
very much, April talks about him quite often.
 In
this picture, Andy is asking April if she
wants to dance at the prom.
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We
were very fortunate when April was born. She
had no major medical problems. However, over
the years she has had tubes placed in her
ears eight times. April also had hip subluxation.
When April was thirteen she had Bilateral
Chiari Osteotomies and was in a spica cast.
She also had a chronic dislocation of her
left patella and it was removed.
Four
years ago, April was diagnosed with having
panic attacks. We were relieved that it
was not seizures. She had a sleep deprived
EEG and went to the Epilepsy Monitoring
Unit. When she has an attack, she just needs
a lot of TLC to work through it.
Our
goal for April is for her to be happy and
to be as independent as possible. We just
want her to enjoy life!
Bill
and Kathy Anders
Call if you want to hear more stories,
712-9353
Meghan
Malone Feb. 2
Anna Fishel Feb. 12
Lesley Liseth Feb. 15
Ana Boggan Feb. 16
Torey Brown Feb. 22
Fallon Cook February
Jacob Campbell March 2
Danny Bishop March 8
Emma Dills March 13
Kristie Shore March 13
Matthew Maready March 24
Cristobal Sandoval March 27
Logan Hampton March 29
Carmen Berry April 4
April Anders April 10
Carter Mouton April 12
Travis Powell April 15
Carson Swisher April 17
Karli Fuller April 25
Marina Harvell April 27
Our
Kids Accomplishments!
Austin
Barnhill, and his brother Daniel got their
Bobcat badge in cubscouts this fall!
In
March Jeremy Donohue will be performing
in "Anything Goes," the winter
Musical at West High School.
Hannah
Newton began preschool at Lewisville Methodist
and is teaching her classmates and teacher
sign language and they are teaching her
to use 3-word sentences!
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PDSSN
Winter Family Gathering
FRIDAY, February 25th
Gathering begins at 5:30 with a variety Soup Supper
served at 6:00 p.m.
Sock Hop Dance and parents meeting will follow dinner
Wear your "niftiest fifties outfit" or
simply your "craziest socks"
Bring your battery powered hips for our shakin'
hula hoops (Oh, yeah baby!)
Don't forget your rubber legs for the limbo bar
contest.
Swingin' D.J. music provided by R.C.C.
Location:
Community Room, Allegacy Federal Credit Union
1691 Westbrook Plaza Drive, Winston-Salem
Directions: I-40 to Stratford Drive, North on Stratford.
Turn left onto Westbrook Plaza Drive. Go to the
stop sign and continue through to Allegacy.
(Allegacy's corporate headquarters are located off
of Stratford Road across from Hanes Mall behind
Red Lobster Restaurant.)
PLEASE,
PLEASE, PLEASE R.S.V.P. by February, 16th
Cory and Denise Collins 336.923.2835
swimmerfamily@yahoo.com
We want to have enough food and fun for everyone!
Helen
Johnson (editor)
PO Box 91
Pfafftown, NC 27040
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