Earthbound Angels - East Texas Down Syndrome Group

Earthbound Angels Newsletter
May & June 2015
Earthbound Angels
A publication of the East Texas Down Syndrome Group
ETDSG is an Affiliate of
National Down Syndrome Congress (NDSC)
and National Down Syndrome Society (NDSS)
Editor Tiffany Angus [email protected]
www.etdsg.org
World Down Syndrome Day
#WDSD15
ETDSG Calendar of Events
May 21st
ETDSG General Meeting
ROC at First Baptist
Longview, 6 pm
June 6th
Model Train Ride & Potluck
June 15th
ETDSG Board Meeting
Rachel Connors’ Home,
6 pm
June
Dad’s Event
**Look for e-mail with
details coming soon
How did you celebrate the 10th Anniversary of World Down Syndrome Day? We
hope it was filled with LOTS OF SOCKS, LOVE and SMILES!
This was the first year for the collaborative campaign in the national Down syndrome
community for Random Acts of Kindness by Down Syndrome Affiliates in Action,
National Down Syndrome Congress, International Down Syndrome Coalition,
International Mosaic Down Syndrome Association, National Down Syndrome
Society, LuMind and Global Down Syndrome Foundation. We shared information
on our Facebook CONNECT Group and Page about this new initiative to honor and
bring awareness to those with Down syndrome. If you missed it on Facebook, sign
up by e-mail or check the notifications box on the group photo if you are already
added.
331 Sandy Lane
Gladewater, 10 am
Down Syndrome International is the originator of WDSD. They held a WDSD
Conference focusing on the theme: "‘My Opportunities, My Choices’ – Enjoying
Full and Equal Rights and the Role of Families.” It was held at the United Nations
Headquarters in New York on March 20th. Check out the conference and video links
to see people from around the world with Down syndrome at:
https://www.worlddownsyndromeday.org/wdsd-conference
*See Page 4 for pictures our group families shared in the
Facebook CONNECT group for WDSD.
Don’t forget to like ETDSG Page & SHARE!
Earthbound Angels
May & June 2015
.
Upcoming ETDSG Events
Model Train Ride & Potluck
Saturday, June 6th
10:00 am until...all the food is gone and the adults are
worn out!
Vance Nickerson, Tori Bullock
and her Uncle Fred riding the
Model Train
Where: Vance and Judy Nickerson home
331 Sandy Lane, Gladewater, TX
Van & Kathleen Bullock have planned this special activity with the
help of their friends, the Nickersons, who have invited our group
members to their home for train rides and a fun lunch together.
Drinks will be provided.
*Please DO NOT park either on or within 3 feet of the small metal railroad
tracks! You MAY park on the grass, and along either side of the roadway
beside the house, but please take care not to block the roadway, park on
another home’s lawn, or block an adjacent home’s driveway. THANKS!
What to Bring:
Potluck Dish
Lawn Chairs/Blankets
Sunblock/Bug Repellant
Folding Tables (optional)
Portable awnings/umbrellas (optional)
Hope to see you there!
Next ETDSG
General Meeting
Thursday, May 21st
6 pm
ROC at First Baptist Church
Longview
(Located at the SWC of Green &
South Streets)
Light dinner and free childcare
Drawing for a
$100 Walmart gift card
Come hear from East Texas Center for
Independent Living
Book of the Month
From the ETDSG Lending Library
A Special Kind of Hero is the story of triumph, hope, determination, and the power of a
loving family. When Chris Burke was diagnosed with Down syndrome in a New York
hospital, doctors advised Frank and Marian Burke to put their newborn in an institution.
The Burke family not only ignored that advice, they treated Chris in much the same way
they did their other children, a decision that has led to remarkable results.
Submitted by Rachel Connors,
Librarian
To check out one of our books or
videos, please contact Rachel at
903-738-1156 or
[email protected]
When Chris’s enthusiasm for acting and Hollywood developed beyond just a phase, the
family gently tried to dissuade Chris from his dreams. Undaunted, Chris pursued his
interest, writing TV scripts, reading books corresponding with people in the film industry,
and taking two buses across New York City to attend evening acting classes each week.
His persistence paid off. Chris was the co-star of the hit ABC series “Life Goes On.”
Chris, with his characteristic optimism, talks about growing up with the condition he has
termed “Up syndrome” as he shares stories about his family, his work with people who
live with disabilities, and his role as Corky Thatcher on “Life Goes On.” Chris Burke was
born and grew up in New York City. In addition to his role in “Life Goes On,” he is the
spokesman for the National Down Syndrome Society, the National Down Syndrome
2
Congress.
Earthbound Angels
May & June 2015
*NEW* ITEMS IN THE LIBRARY
Books for Tweens to
Early Adulthood
DVDs
Know someone who just
received DS diagnosis?
Here are some great
resources:
MUCH MORE!!!!!
Our lending library has a variety of books,
videos, and learning materials for your use.
The library is on display at our general
meetings at the ROC. However, you may check
out at any time by contacting our librarian,
Rachel Connors. A full list of materials is on
our website: www.etdsg.org
Go to www.woodbinehouse.com
to look for more great books, videos
and other resources. Let us know if
you find something you need and we
can add it to our library.
3
Earthbound Angels
May & June 2015
4
Earthbound Angels
May & June 2015
Spring Fling 2015
Tyler
5
Earthbound Angels
May & June 2015
Other Community Events of Interest:
May 19th – A.I.M. Group
12-1 pm, Downtown Coffee Shop, 101 E. Tyler St., Longview; Awareness-InformationMotivation group for sharing information to encourage greater independence in the lives of
people with disabilities, Monthly Meeting every 3rd Tuesday, This Month – Adult Protective
Services Info. & Dispelling Myths
May 20th – Tyler MOMS Group Meeting
11 am, Bruno’s Pizza & Pasta, Old Jacksonville Hwy., RSVP to Stephanie Hacker 903-595-3942
ext. 6255 or [email protected].
May 22nd & June 26th – Dance Karaoke Night - Sponsored by ETxADRC
6-7:30 pm, Community Connections, 501 Pine Tree Rd., Longview; Designed for persons of all
abilities; Monthly Activity every 4th Friday
May 28th – Longview MOMS Group Meeting
11 am, Location to be announced; Sponsored by Therapy 2000, Contact Stephanie Hacker for
more information 903-595-3942 ext. 6255 or [email protected].
June 4th – Dads of Children with Special Needs Support Group
7 pm, Daniel Boone’s Grill & Tavern, 1920 E. SE Loop 323, Tyler. RSVP to Clint Peery, EPIC,
Executive Director 903-509-3742 or [email protected].
June 9th – Bingo Night - Sponsored by ETxADRC
4-6:30 pm, Community Connections, 501 Pine Tree Rd., Longview; Designed for persons of all
abilities; Monthly Activity every 2nd Tuesday
June 18th - Tyler MOMS Group Meeting
6:30 pm, Location to be announced; Sponsored by Maxim, Contact Stephanie Hacker for more
information 903-595-3942 ext. 6255 or [email protected].
June 25th – Longview MOMS Group Meeting
6:30 pm; location to be announced; Contact Stephanie Hacker for more information 903-5953942 ext. 6255 or [email protected].
March ETDSG General
Meeting
Damiya Pentecost, from
Longview Transit is pictured
with Laura Howard. We
appreciate Damiya for sharing
information on how to get
trained and access public
transportation in Longview and
around East Texas.
#WDSD15
Facebook Page
Promottion winner
of the Peters Oil
Change & Car
Care was Kristin
Yielding.
Family
Friends
Pizza
Learning
FUN!!
Join us
May
21st
July 2nd – Dads of Children with Special Needs Support Group
7 pm, Chuy’s Mexican Restaurant, 5935 S. Broadway Ave. Tyler; RSVP to Clint Peery, EPIC,
Executive Director 903-509-3742 or [email protected].
Summer Respite 10am – 4pm (contact Stephanie Hacker to sign up, 903-595-3942 ext. 6255)
Longview
Hawkins
Tyler
June 6th, Aug. 1st
Boys & Girls Club, 610 Garfield St.
June 13th, *July 11th
FB Church, 210 Forest St.
*at Hawkins Spray Park
June 20th, July 18th, *Aug. 15th
Andrew Ctr., 1710 W. Front St.
*tentative at Tyler Spray Park
Officers and Board of Directors
Much to the regret of the ETDSG Board, Laura Howard decided that her current circumstances have required her to step down as
President of the East Texas Down Syndrome Group. Laura has served us faithfully and well. She leaves this position with ETDSG
as strong as ever. The board appreciates the wonderful job she has done, and we look forward to working with her in the future. Thus,
the April 24th board meeting required the board to appoint new officers for the remainder of the term until March 2016 . We would like
to welcome new board members James Gray and Chad Newman. We would like to also express our appreciation to Wayne Howard,
who is rotating off, for his committed service. All current officers and board members can be found on Page 9.
Thank you all for your dedication and service!!
6
Earthbound Angels
May & June 2015
Have you registered on DS-Connect yet?
Go online to
https://DSconnect.nih.gov
Why should I join DS-Connect?
DS-Connect : The Down Syndrome
Registry is a voluntary, confidential,
online survey that collects basic health
information about people with Down
syndrome. This resource was launched
by the National Institutes of Health with
help from the Down Syndrome
Consortium, a group of national and
international organizations that focus
on and support the Down syndrome
community. The consortium includes
NDSS, National Down Syndrome
Congress, Special Olympics, Lumind,
and many more.
and get on the registry
ASAP
DS-Connect participants can:
• Print out a summary of their health
history
• Find health care providers in their area
who care for people with Down syndrome
• Help health care providers improve care
for people with Down syndrome
• Explore trends in the overall health of
people with Down syndrome based on
survey results
• Learn about new studies for people with
Down syndrome
• Connect with scientists who study Down
syndrome
• Help scientists develop new treatments for
people with Down syndrome
Have you heard about Down Syndrome World Magazine?
Global Down Syndrome began publishing this quarterly magazine in
Fall 2014. They include lots of up-to-date information for the Down
syndrome community. You can get it too! Here’s the info:
INDIVIDUAL BASIC MEMBERSHIP - $20.00 / year
 Support Global Down Syndrome Foundation
 One-year subscription (4 issues) to Down Syndrome World magazine
 Digital access to Down Syndrome World
Go to: www.downsyndromeworld.org to pay by credit
card or mail check payable to Global Down Syndrome
Foundation with your name, address, phone and e-mail to:
Down Syndrome World, 3300 E. First Ave., Suite 390, Denver, CO 80206
Courage does not
always roar.
Sometimes it’s the
quiet voice at the
end of the day
saying,
“I will try again
tomorrow.”
7
Earthbound Angels
May & June 2015
14th Annual Buddy Walk
OCTOBER 10TH, 2015
The ROC at First Baptist Church, Longview
It’s right around the corner! Our first Buddy Walk
Committee Meeting is:
Monday, May 18th @ 6 pm
Papacita’s, Longview
Join our new Buddy Walk Chair, TJ Angus with sub-chairs,
Cristi Gray & Lisha Mack to plan at this dinner.
Many hands make light work, so please consider
joining our committee this year.
Kendall Boyles
2015 Ambassador
Pictured with her mother,
Kelli at 2012 Buddy Walk
Texas Down Syndrome Advocacy
Coalition NEWS
The Texas legislative Session ends June 1st. There are
some important bills to contact your representatives
about before it’s over. The TDSAC encourages FOR
votes on the following:
SB 1664 - Texas ABLE Act, passed by the Senate so it
now needs votes in the House
HB 3374 - Down Syndrome Information Act to require
physicians to provide current DS information or contact for
local group at diagnosis
HB 1807/SB 37- collects information on Post Secondary
Education for people with Intellectual & Developmental
Disabilities (PSE/IDD) programs
#WhereHopeGrows
“Where Hope Grows is an incredible film that demonstrates the power of
value, acceptance, and inclusion of people with Down syndrome through
all walks of life. David DeSanctis, “Produce”, is a true inspiration and is
paving the way for individuals with Down syndrome who strive for their
own careers, relationships, ambitions, and independence.”
- Sara Hart Weir, President of the National Down Syndrome Society (NDSS)
http://wherehopegrowsmovie.com/
SB 38/HB 1809 - Directs the state to create an advisory
committee on PSE/IDD programs
SB 507 - Cameras in self-contained classrooms
HB 3991 - Affects IEP's by:
- requires gen. ed. teacher who is on the ARD committee to
be responsible for the implementation of a portion of the
student's IEP
- provides opportunity for any committee member who
disagrees with anything in the meeting to write a statement
to be included
- directs schools to provide audio tape or written transcript
of the meeting in the native language of the family.
Find your Senator & House Representative contact info at:
http://www.fyi.legis.state.tx.us/
8
Earthbound Angels
May & June 2015
Summer Camps:
Camp Courageous at the Rockin’ C Ranch in Lindale
June
This day camp operates from 9 am to 3 pm for four days and is located on
a working ranch. The program is for individuals with special needs,
with most participants having Down syndrome, Autism, or Asperger
Syndrome. The staff is taught that each child is an image-bearer of
God. There is close to a one to one ratio of camper to helper.
Activities include crafts, singing, lake swimming, horseback riding,
archery, and more. Participants must have a clinical diagnosis of a
disorder and must be high-functioning and able to toilet and feed
themselves. For a complete list of criteria, an application, or for
more information, please contact www.RockinCRanch.org or call 903-8583308. This camp is a favorite of many in our Down syndrome group and in
the past there has been bus pick-up and drop-off in Tyler and van pickup and drop-off in Longview. The camp is FREE!!
Texas Lions Camp in Kerrville
July
Board of Directors
President: Richard Johnson 903-935-5136
Vice President: April Wilson
Secretary: Jennifer Ferrell
Treasurer: Susan Johnson
Board Members at Large:
Sonia Alonzo, Hispanic Contact/Spanish
Translator
This week long overnight camp is located in the beautiful Texas Hill
Country. This session is exclusively for children with Down syndrome
whose ages are 12 to 16 years and provides a full camp experience with
typical camp activities. A potential camper needs to be sponsored by a
Lions Club in their home area. Mr. Andy Reese of Canton, TX is the
district contact for most of East Texas and he can be contacted at 903330-1494 or [email protected] to get an application and inquire about
sponsorship. Andy came to our March general meeting and spoke about the
camp and it sounds great! To look online for more camp information, go
to lionscamp.com. The camp is FREE!!
Camp Blessing near Nacogdoches
Rachel Connors, Librarian/Self Advocate
Kelly Bunger, Tyler Area Contact
T.J. Angus
James Gray
Lisha Mack
Chad Newman
Kay Stout
Moving? New Phone Number? New Email?
Camp Blessing Texas welcomes persons 7-years and older with a primary
diagnosis of a physical or intellectual disability. Camp Blessing Texas
also invites all siblings, ages 7-13, of our campers to be a camper
Please update your information. We don’t
want you to miss anything! Contact
Tiffany Angus at 903-740-3843 or
[email protected].
themselves. Older siblings (age 14+) have the opportunity to volunteer
at camp. For information on camp in June go to www.campblessing.org.
These are just a small sampling of camps available for our children.
There are certainly more out there so find the one that best meets your
needs.
Attention AMAZON SHOPPERS!
You can do all your typical shopping on
Amazon and help ETDSG. Every time you
shop Amazon go to:
www.smile.amazon.com
When you shop @AmazonSmile, choose
ETDSG, and Amazon will make a donation to
our group with each purchase.
Share with family and friends!!!
THANK YOU!
https://smile.amazon.com/ch/71-0908666
9
May & June 2015
Earthbound Angels
Letter from the New President
Micah is learning how to read. Eleven years ago I wouldn’t have been impressed
to hear that a ten-year-old child was learning how to read, but then a precious boy arrived
with his spare chromosome. Our lives have changed a lot since January 2005, and I like
who we have become in the last decade.
As you have probably heard, I am now the ETDSG president. In many ways I
feel like I too am learning how to read. Laura and Lisha, our previous two presidents,
have made our group strong and have set good examples for how to be president and
Tiffany, our new executive director, is doing an excellent job. ETDSG has changed a lot
since it was “born," it has even had a name change; does anyone else remember the
Longview Area Down Syndrome Support Group? My first meeting was in the ROC, then
we moved across the street to the Education Building, and now we are back in the ROC.
Some cherished people have moved away, other wonderful faces have become part of our
family portrait. None of us knows what wonders the future will hold for us personally or
for ETDSG, but working together we will be able to make that future full of successes and
smiles. I will be a better president if you let me know what I can do. Let’s “learn to read”
together.
I decided to close these thoughts with a photo of Micah for several reasons: (1) he
is much cuter than I am, (2) he’s the reason I found the many wonderful people who have
entered my life through ETDSG, and (3) I can’t do what he is doing in this photograph.
Working together we will learn to do things we didn’t know we could do (but I doubt that
I will ever be able to put even one ankle behind my head). Have a great summer, and I’ll
be in touch.
Richard Johnson
PO Box 6604
Longview, TX 75608
Above: Richard Johnson
Below: Micah Johnson