|  October
is
Down syndrome
Awareness Month!
November is
Prematurity
Awareness Month!
BEST BUDDIES INDIANA "MARDI GRAS" BALL
February 20, 2010
The Conrad Indianapolis
50 West Washington Street
Indianapolis, IN 46204
Join Best Buddies Indiana supporters at the Best Buddies Indiana "Mardi Gras" Ball on February 20, 2010 at The Conrad Indianapolis.
Experience a spectacular evening featuring a complimentary martini bar, gourmet dinner, live entertainment, wine toss, and much more!
Please contact Sarah Baldini if you are interested in donating auction items for the Ball or if you are interested in securing a corporate sponsorship for the event.
NATIONAL DOWN SYNDROME ADVOCACY DAY IN DC
Join the National Down
Syndrome Society for the Buddy Walk® on Washington February
24th and 25th, 2010!
Government Affairs Committee (GAC) leaders, affiliate
leaders in government relations, seasoned self-advocates
and others will come together to "walk" right
into the offices of their elected officials! This will
be an ideal opportunity to:
• Learn strategies for successful advocacy
• Meet with elected representatives
• Create lasting partnerships
• Connect with other Down syndrome advocates from
around the country
To register, call Vanessa Quick at 1-800-221-4602.
The fee for registration, which
includes a ticket to the Reception and Award Ceremony,
is $25. All registrants will
receive online training, information and resources before
the conference to facilitate
preparations for meetings with elected officials.
To arrange your stay, contact the conference hotel,
the Washington Plaza Hotel at www.washingtonplazahotel.com
or 1-800-424-1140. The hotel is located in close proximity
to the offices on Capitol Hill. Please let the reservation
agent know you will be attending the Buddy Walk on Washington
to receive the special conference rate.
WORLD DOWN SYNDROME
AWARENESS DAY
March 21, 2010. For more
information, go to worlddownsyndromeday.org
BEST BUDDIES INDIANA "FRIENDSHIP WALK"
Sunday, April 25, 2010
The White River State Park Canal
Join other Best Buddies Indiana supporters and participants as they raise awareness and funds for Best Buddies Indiana high school and college programs at the 2010 Best Buddies Indiana Friendship Walk on Sunday, April 25, 2010. The event, which will be held along the White River State Park Canal, includes a 5K competitive run/walk and a 2.6 mile non-competitive walk/run.
Additional information about the Ball and the Friendship Walk will be posted online at www.bestbuddiesindiana.org.
INDIANAPOLIS
MARCH FOR BABIES
It's America's favorite
walking event! When you walk, you give
hope to the families of babies born too soon or sick.
The
money you raise supports programs in your community
that
help moms have healthy, full-term pregnancies. And it
funds
research to find answers to the serious problems that
threaten
our babies. We've been walking since 1970 and have raised
an incredible $1.8 billion to benefit all babies. The
Indianapolis
event takes place Sunday, April 25, 2010.
For more information, go to March
of Dimes - Indiana.
THE 38th NDSC
NATIONAL CONVENTION
July 16-18, 2010
Walt Disney World, Florida
For more information, check out the NDSC
website.
2010 DOWN SYNDROME
FAMILY CONNECTION BUDDY WALK
Takes place in Bloomington,
IN. Date and place TBA. For more details, go to www.downsyndromefamilyconnection.org
2010 DOWN SYNDROME
INDIANA BUDDY WALK
Takes place on Saturday,
October 23, 2010 at Celebration Plaza,
White River State Park, Indianapolis, IN. For more details,
go to www.dsindiana.org
NATIONAL INCLUSIVE
SCHOOLS WEEK
December 6-10, 2010. For
more information, go to InclusiveSchools.org
Legislative News
and Updates
BILL
INTRODUCED TO ESTABLISH DOWN SYNDROME CENTERS OF EXCELLENCE
On October 7, 2009 The Translational Research Parity
Act of 2009 (S.1762) ( "21 Act") was introduced in the
Senate by Senator Sam Brownback (R.KS). Senator Sherrod
Brown (D.OH) is also a co-sponsor. A companion bill,
H.R. 3656 was introduced in the House of Representatives
by Cathy McMorris-Rogers (R. WA) along with Representatives
Patrick Kennedy (D.RI) and Pete Sessions (R. TX). This
Act would:
• Create at least six Down Syndrome Translational
Research Centers of Excellence that provide an infrastructure
for patient-oriented research, and conduct basic, clinical,
and translational research on Down syndrome;
• Establish a Down Syndrome Coordinating Committee
to coordinate activities across the National Institutes
of Health (NIH) and with other Federal health programs
and activities;
• Develop a National Down Syndrome Patient Registry
and Biobank through agreements with the Centers for
Disease Control and Prevention (CDC) to:
• Provide clinical care for patients with Down
syndrome;
• Coordinate research and clinical activities
through the Down Syndrome Translational Research Centers
of Excellence with the activities of the National Down
Syndrome Registry and Biobank; and,
• Create a common data entry and management system
for Down syndrome patient data collection and analysis.
Call your Senators and House of Representatives member
to request that they co-sponsor this important legislation.
Follow this link and input your zip code to get your
state-specific information and a sample letter. Click
Here
OBAMA SIGNS BILL GIVING DISABILITY HATE CRIMES PROTECTIONS
On October 28, 2008, President Obama signed a hate crimes
bill that extended protection of that bill to individuals
with disabilities. This means that it is a federal offense
to commit a crime against a person based on their disability.
This would result in harsher criminal sanctions than are
currently provided for by state criminal laws.
Under the new law, hate crimes protections will be widened to
include crimes committed based on a person's gender, sexual
orientation, gender identity or disability. Before passage of
this bill, crimes committed based on race, color, religion or
national origin were considered hate crimes.
People with disabilities are 50 percent more likely to experience
nonfatal violent crime than those without disabilities,
according to a Justice Department study released in early October.
Additionally, the study found that about one in five crime victims
with disabilities believe their disability was the reason they were targeted.
Tips
From The Therapist
Some of our contributing
Therapists have shared with me that they take their
cue from the parents on how much to interact with them
during therapy sessions. The Therapists shared that
generally parents who ask to be present at sessions,
ask questions, are actively engaged in the session,
etc. are more likely to want a high level of interaction
with the Therapist. However, if parents "disappear"
during the session, never ask questions, etc., the level
of interaction with the Therapist is much lower. So...
if you were wondering how to become more involved in
your child's therapy session -- be actively engaged
in the session, ask more questions and/or ask the Therapist
show you what activities you can do with your child
until the next session.
 Doesn't
it always look easier while the therapist is there?
Evan's PT, Melissa, always comes up with ways to make
therapy "home work" a little more fun! She
is a firm believer in using every day items in therapy.
Here, Melissa is using "walking sticks" and
a scooter board to help Evan walk across the floor.
The sticks are easy for Evan to hold, and the scooter
board makes it easy for Melissa to move with him. Evan
can also use the sticks to keep his balance when stepping
up. My favorite part of this exercise is that I can
walk behind Evan holding the sticks at the top while
he's holding on at the bottom -- no more back pain from
bending over and holding is hands while he walks, (other
older parents will appreciate that as much as I do).
 To
make the walking sticks, you just need two dowel rods
(you can purchase them at any hardware store). Paint
the rods something fun and decorative that reflects
your child's personality. You can purchase the scooter
board at Target or most toys stores. If you can' find
a scooter board, you can use a rolling gardening bench.
You can finds those in the gardening section at Walmart,
Target, Lowe's, etc.
Show
n' Tell  Another
great discovery! While getting Evan to crawl was fairly
easy, we had such a difficult time finding something
to motivate him to walk! He had the mechanics down,
but just didn't seem that interested. One day, a friend
told me about shoes from China that squeaked and how
kids just loved walking in them. Knowing how much Evan
loves noise, I searched the internet and there they
were - Pip Squeaker Shoes. I ordered two pairs - one
to fit his bare feet and one to fit over his orthotics
(Yes! They come in wide and extra-wide.) Evan put them
on for the first time in a PT session and, of course,
took eight independent steps right away! He's been on
his feet every since then. One of the best things about
them is that the squeaker is in the heel of the shoe,
so to get them to squeak, the child has to walk heel-to-toe.
You can find Pip Squeakers at www.pipsqueakers.com
and at amazon.com. Lots
of styles and colors!
The WubbaNub™ is designed to keep the pacifier conveniently
placed to infant. Soft plush brings soothing comfort
and security. Vibrant colors are stimulating and captivating.
The WubbaNub™ is also an asset helping in the development
of hand-eye coordination.
- Birth (Full Term) to 6 Months
- Latex Free Medical Grade Silicone Pacifier
- Soft Comforting and Soothing Plush Toy
- Stays Close to Baby
- No Pacifier Cords or Clips
 Evan's
WubbaNub was a life saver! It was easy for him to hold
and was key in him learning to later hold his bottle
and self-feed.
 This
is a Bumbo
Seat. It did wonders helping Evan strengthen his
muscles to sit up. It is a European product that is
just now making its way to the US. I shared it with
one of Evan's therapist, and she has shared it with
other parents. You can get it locally from Babies'
Secret Unique Baby Products 317-733-8892. The Bumbo
Seat is now also available at Target, Walmart, Meijer
and Babies-R-Us.
I have
always tried to be careful when buying Evan’s
toys (most of his are Little Tikes), but considering
all the toy scares lately, this may be another good
option. They have a lot of great items to supplement
therapy.
www.novanatural.com
Nova Natural Toys
and Crafts is a small, family owned business
in Shelburne, Vermont. Nova has all sorts of Eco-friendly,
natural toys, from rattles and teethers to blocks and
puzzles.
Nova's Philosophy:
Nova Natural was created 18 years ago out of a desire
to provide families and teachers with a wide variety
of natural products, which are conducive to creative
and wholesome living. We offer finely crafted toys that
inspire imaginative play, beautifully illustrated children's
books, a wide range of parenting and craft books, non-competitive
games which successfully combine action and challenge
with co-operation and compassion and natural craft and
art supplies to create your own works of beauty.
According to the philosophy that guides Nova Natural,
each toy should be age-appropriate in form and in function.
Toys should further the child's inner development allowing
children to express moods and feelings freely and have
an 'open-ended' quality, without the limiting, predetermined
play which can come when toys are too formed or too
fixed in their function. A simple toy allows the child's
imagination, full play. For example, a doll with only
suggested facial features can do anything imaginable,
laugh, cry, talk, etc. Toys should strengthen and encourage
the child's fantasy life so that a child can submerge
himself in play, in the world of myth and fairy tales,
live outside his day-to-day experiences, imitating adult
life with housekeeping toys and through pretend play.
The child is able to solve challenging situations when
he becomes a rescuing hero with his fire engine will
be the adult able to resolve difficulties in the office,
laboratory or factory, and 'rescue' the work situation.
'Play prepares the future, and playthings and the play
environment should give opportunity for this.' (Joan
Salter, The Incarnating Child)
Got drool? Get Bandit
Bib.
"Bandit Bib™ is a small stylish baby bib
that looks more like a fashion accessory. It is 100%
cotton and made in the USA." I have found that
it is perfect for "big boy" Evan who still
struggles with tone around his mouth. He can wear it
school and it does not look like baby bib, but like
he's making a fashion statement.
|
Prince Evan's Parent Network
THE
CHILD KING DVD (
