Earthbound Angels - East Texas Down Syndrome Group

Earthbound Angels Newsletter
October 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
etdsgdirector@gmail.com
www.etdsg.org
3, 2, 1…..Buddy Walk® of East
Texas is Upon Us - Sat. Oct. 10th
ETDSG Calendar of Events
Oct. 10th
It’s our biggest day of the year! ETDSG is celebrating our
14th Annual Buddy Walk® and you don’t want to miss it.
14th Annual Buddy Walk®
The ROC at First Baptist
209 E. South St., Longview
9 am-1 pm
Get prepared by:
Nov. 2nd
1. Registering – Use the form from last newsletter or go to
www.etdsg.org and “Sign Up Now.”
ETDSG Board Meeting
Rachel Connor’s Home
6pm
Nov. 19th
Regular Meeting
The ROC at First Baptist
Longview, 6pm
2. Finding Sponsors – Ask your bank, grocery store, doctor, or any
other businesses you associate with if they will sponsor your team.
3. Invite family and friends to join YOUR TEAM through Facebook
or e-mail. Also, invite them to “Like” our page on Facebook. We
are trying to get to 1000 Likes by Buddy Walk so please share!
4. Create your “Walk of Achievement” poster (see page 3 & insert).
5. Get ready to have a GREAT DAY OF CELEBRATION
TOGETHER!
Pictured is 2012 Goodwill
Ambassador, Dalton Autry at our
11th Annual Buddy Walk® with
his family at Teague Park in
Longview.
October is National Down Syndrome
Awareness Month
Earthbound Angels
October 2015
Buddy Walk® Details
Our entertainment chair, Cristi Gray has been working on all the great activities to make
our celebration so much fun for everyone. We will have music, inflatables, pumpkin
painting courtesy of the Ambucs Longview Too teen group, face painting by the Longview
High School Art Club, and a special performance by Artsview Children’s Theatre Bravo
Players choir. A delicious hot dog lunch will be served to all registered participants.
Again, we will sell tickets for a drawing for a special “boy” and a special “girl” basket
filled with goodies. These baskets were made and donated by two friends of ETDSG.
The baskets will be on display at the registration tent.
Board of Directors
President: Richard Johnson 903-935-5136
Vice President: April Wilson
The Longview Ambucs Too club will once again be fitting individuals for Amtrykes.
These are adapted tricycles for children and adults that are unable to ride typical trikes or
bikes. These are great for our kids and they are FREE!
Secretary: Jennifer Ferrell
Special drawings will be held with donations from our National Buddy Walk® Sponsors:
Board Members at Large:
-
Treasurer: Susan Johnson
Executive Director: Tiffany Angus
Sonia Alonzo, Hispanic Contact/Spanish
Translator
Baby Signing Time Cards
2 Miraflex Frames
Sport Strider Bike (Ages 18 months – 5 years)
Kelly Bunger, Tyler Area Contact
Rachel Connors, Librarian/Self Advocate
T.J. Angus
The team that raises the most money will win an iPad and the team with the greatest
number of registered walkers will win an iPad Mini. Deadline for team prize eligibility is
October 8th. For additional information, contact the Buddy Walk Chair, TJ Angus at
eastTXbuddywalk@gmail.com or call 903-399-9103.
Our 2015 Diamond Buddy Walk® Sponsors
Jim & Patti Wright Family
Foundation
James Gray
Lisha Mack
Chad Newman
Kay Stout
Moving? New Phone Number? New Email?
Becky & Sammy
Whatley
Steve & Nicole
Bodenheimer
Please update your information. We don’t
want you to miss anything! Contact
Tiffany Angus at 903-740-3843 or
etdsgdirector@gmail.com
George & Martha
Joseph
East Texas Down Syndrome Group
Budget Overview
January through December 2013
Book
of the
Month
In this comprehensive resource on inclusive schooling, administrators, general and special
educators, and parents explore how inclusive education can support a diverse student body
at all grade levels. They show how schools can meet standards and provide a “least
restrictive environment” for students with disabilities by using cooperative learning,
teaming, multi-age grouping, multicultural education, social skills training, and
Budget
educational technology
applications. And they explain how to facilitate change by using
Jan - Dec '13
universal design principles and other curricular, instructional, assessment, and
$ practices.
45,000.00
organizational
Income
Buddy Walk
Miscellaneous Income
Appreciation Banquet
Total Income
$
500.00
Submitted by Rachel Connors,
$
500.00
The
authors
examine
Librarian. To check out one of
$ 46,000.00 the prevailing myths and the most frequently asked questions about
inclusive education, and they provide an extensive list of resources. Woven through the
our books or videos, please
Expense
stories of people with disabilities and the educators and parents who
contact Jennifer FerrellBank
atService
903-Charges book are the $personal
100.00
As their voices make clear, inclusion is more than an educational
Appreciation Banquetwork with them.
$
2,000.00
753-0561 or ferrelljen@att.net
$
1,500.00is a way of life, based on the belief that each individual is valued and
buzzword; inclusion
A list of our materials Brochures
is on our
Buddy Walk Expense
$
7,000.00
belongs.
website at www.etdsg.org
Dues and Subscriptions
$
100.00
Education/Materials
Family Support
Insurance
Meeting Food
Misc. Office
Misc. Scholarships
Miscellaneous
National Meeting
New Parent Packages
Newsletter
Postage and Delivery
$
$
$
$
$
$
$
$
$
$
$
500.00
2,000.00
2,000.00
900.00
600.00
3,000.00
500.00
10,000.00
1,000.00
3,000.00
1,000.00
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Earthbound Angels
October 2015
Tyler Teen & Young Adult Karaoke @ Wright’s BBQ
Past ETDSG Events
Dads & Kids’ Fish Hatchery
& Lunch in Athens
WALK OF ACHIEVEMENT
This is a great opportunity to share about each person with Down syndrome. The
"Walk of Achievement" is new to our Buddy Walk® where posters of each
person with DS will be shared. Please follow these instructions to create yours:
1.
2.
3.
Our Board
President,
Richard was
interviewed
during the fish
hatchery visit by
a local station
about our group.
Choose (3) photos of your child. These photos should be of
your child doing something he or she is proud of.
Use the insert in this newsletter to fill out the information sheet
that is appropriate to your child’s age. If your child can write,
please have him or her fill out the information sheet. This is an
opportunity to show off their accomplishments and writing
may be one of their achievements.
Secure the information sheet and pictures to a ½ sheet of blue
or yellow poster board (22” x 14”, vertically). Include TEAM
NAME somewhere on the poster. Bring them to the Buddy
Walk and use the supplies to post your child’s board at our
“Walk of Achievement.” If your child has been one of our
ambassadors in the past, please note that at the bottom of the
poster (ex: “Ambassador 2008”).
Pick up your poster before leaving at the conclusion of the
Buddy Walk. Our group doesn’t have storage space to keep
them so what’s left will be discarded.
Remember to focus on your child’s abilities, accomplishments
or anything that helps those at the walk get to know him or
her. Keep it short and sweet! We want the walkers to take time
to read about all our wonderful children. Any questions?
Please call Tiffany Angus at 903-932-0660.
E
T
4.
D
S 5.
G
S
We will have some information sheets at the Buddy Walk you can fill in, but it's
best
pto have it completed before you arrive so you can just post it and enjoy the
festivities.
r Thank you for making our Buddy Walk® the best it can be!!!
i
n
3
g
Earthbound Angels
October 2015
Kendall Boyles
In The Spotlight…
of Huntington
2015 Buddy Walk
Goodwill Ambassador
- Submitted by her mother, Kelli Boyles -
Kendall is 6 years old and is the youngest of 4 children. She lives in
Huntington, Texas with her Dad, Mom, sister Taylor, and brothers Kevin and
Tanner.
My husband, Waylon and I learned around 6 months into my pregnancy that
Kendall would be born with Down syndrome and that she also had a heart
defect that would require open heart surgery for her to live. Kendall had an AV
Canal defect, which means she had a hole between her heart chambers and
problems with the valves that regulate blood flow to the heart. She was born in
2009 weighing under 6 pounds and was flown to Texas Children's Hospital by
the Kangaroo Crew. We spent the next three weeks in the NICU undergoing
many tests and being monitored by teams of doctors and nurses. At 7 months
old, she underwent two heart surgeries in one week at TCH and spent two more
weeks there recovering. Since then Kendall has not had any other problems, nor
do the doctors expect her to have any in the future. Our friends and family have
all showered us with love and support from day one by loving Kendall
unconditionally and just being there with us when we needed a shoulder.
Kendall was asked to serve as the ambassador in April of 2012 for the March
of Dimes in Nacogdoches,TX. It consisted of a three mile walk starting in
Pecan Park and going through the SFA campus. With this opportunity, I was
able to speak at a luncheon to help bring awareness of DS and the increased risk
of congenital heart defects that come along with the diagnosis. She has
participated in a local special needs pageant and Mission Friends Class at our
Church on Wednesday nights.
At the age of three she was enrolled in the PPCD program at Huntington
Elementary, and this year she is in Kindergarten! She receives Physical,
Occupational, and Speech therapy while she is there. Kendall can count from 120 with little prompting and can identify several shapes. She also knows several
colors including her favorite which is PINK! Kendall is very outgoing, social
and independent. She has managed to win the hearts of everyone on staff at her
school and sometimes gets to "work" in the office.
Kendall loves books and music! Her favorite singers are Hank Williams Jr.,
Katy Perry, and Maroon 5. She knows pretty much every song that comes on
the radio. Her favorite TV Shows are Doc McStuffins, which she loves to
imitate, and Chrisley Knows Best. She loves playing outside on her swing set
and has even taken up fishing this summer with her new "Frozen" rod and reel.
We tried a season of T-Ball and although she looked precious in her little
uniform, we knew we needed to find something that she enjoyed. Kendall
recently joined the "Superstars', a special needs cheer team in Lufkin, at the
Academy of Gymnastics and Dance. With her love for music and dancing, this
has been perfect for her and has also given me a chance to meet and visit with
other moms. The team performs at several games and are involved in local
parades.
We are beyond grateful for this opportunity for our sweet Kendall. We hope
to spread a positive image and raise awareness for people with Down syndrome.
Our goal is for all people with DS to have the opportunity to enhance their
quality of life and be welcomed with open arms in our communities.
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Earthbound Angels
October 2015
Editor’s Note: The following article is from the Spring 2015 Issue of Down Syndrome World Magazine. We will be sharing articles in some
newsletters, but you can get the full magazine’s full content by subscribing to the quarterly magazine at www.downsyndromeworld.org
INCLUSIVE EDUCATION: A Basic Civil Right
ALL CHILDREN ARE ENTITLED TO AN EQUAL — AND INCLUSIVE — EDUCATION.
“Today, education is perhaps the most important function of state and local governments…. It is a principal instrument in
awakening the child to cultural values, in preparing him for later professional training, and in helping him to adjust normally to
his environment. In these days, it is doubtful that any child may reasonably be expected to succeed in life if he is denied the
opportunity of an education. Such an opportunity…is a right, which must be made available on equal terms.”
This statement appeared in 1954 in the landmark Brown v. Board of Education ruling that “separate but equal”
educational settings are unconstitutional. Yet for too many children with Down syndrome and other disabilities, an equal
education in which they are fully included in general education classrooms remains elusive even today.
“While the original court ruling that separate is not equal may have applied to children of color, it still applies to students
with disabilities,” said Jenny Stonemeier, Education Policy Director at the nonprofit disability rights organization TASH.
“Inclusive education is a civil rights issue. It’s not just something we do out of the goodness of our hearts. It’s the right thing to do,
and it benefits all kids. Research has shown that when students with disabilities are given genuine access to general education
curriculums, outcomes improve for all students, not just those with disabilities.”
SLOW BUT STEADY PROGRESS
Before the Individuals With Disabilities Education Act (IDEA) first passed in the 1970s, children with Down syndrome weren’t
educated in the same settings as typical children. Often, they were relegated to separate schools if they received any schooling at
all. The law changed that by guaranteeing a free public education for students who are differently-abled, marking the first major
success for special education in the United States. In 1997, when the law was reauthorized, Congress stipulated that children with
special needs were guaranteed not only a free and appropriate education but also one that was integrated into general education
classrooms whenever possible. A report submitted alongside the legislation underscored that decision by stating, “Inclusion is a
philosophy of acceptance and flexibility.” Inclusive education gained additional support with the passage in 2002 of the No Child
Left Behind Act. The act states that children with disabilities are served best when they aren’t in segregated classrooms. Rather
than holding schools accountable for complying with existing guidelines, the law requires that schools meet performance
standards, which apply to both students who are differently abled and their typical peers, and that teaching methods are based on
scientific research. And there’s no lack of research supporting the benefits of inclusive education.
30 YEARS OF PROOF
“Children rise to the expectations you set for them,” said Mary Schuh, Ph.D., Director of the National Center of Inclusive
Education at the University of New Hampshire’s Institute on Disability. “The higher the expectations, the more a child is going to
learn.” In inclusive education settings, children with special needs have been found to perform better on standardized tests, score
higher on literacy tests, and get better grades overall, than children in segregated settings. They’re also more motivated to learn,
and inclusive settings improve social and behavioral skills. At the same time, typical children in inclusive classrooms suffer no
decreases in academic performance, and studies have shown that inclusive classrooms encourage more participation in class
discussions and other activities, such as tutoring and cooperative learning groups. “We have a really robust body of research that
has demonstrated, unilaterally, that when kids with disabilities are included, outcomes improve for everyone,” Stonemeier said.
Parents agree. In a national poll of mainstream America conducted by the Global Down Syndrome Foundation, 73 percent all
children, and 75 percent said that they are comfortable having a child with Down syndrome in their typical child’s class.
OVERCOMING BARRIERS
With such high levels of parental support and such a wide body of research pointing to its benefits, inclusive education should
become the norm — but parents have a long road ahead of them. “From the federal perspective, there really are no reasons that
inclusive education should be hard to implement,” Stonemeier said. “But there are challenges at the local level.” A fundamental
issue is funding. Federal education dollars are allocated to state and local education agencies for ver y specific uses, Stonemeier
said. Those agencies often find it easier to keep children with special needs segregated in order to ensure that federal funds
designated for special education are used appropriately. It’s also difficult to ensure that educators are equipped with the
knowledge and resources they need to teach students with a wide range of abilities. “There’s a lot of relearning that needs to go
Continued on pg. 6
Continued on pg. 6
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Earthbound Angels
October 2015
Continued from pg. 5
on with those of us who have been in the field for a while,” said Dr. Schuh, who’s a former teacher. “Having children with
special needs in general education classrooms may mean a change in how we do our jobs, and that can be a bit of a barrier.”
INVOLVING PARENTS, SUPPORTING KIDS
Ultimately, parents need to be advocates for their children and be constantly involved in their education, Stonemeier said. Paying
visits to general education and special education classrooms and explaining to educators why children benefit from a more
inclusive environment is a good first step. Local Down syndrome advocacy groups can help, if necessary, when parents
encounter resistance from educators.
Both Stonemeier and Dr. Schuh work with a federally funded program called SWIFT Schools (Schoolwide Integrated
Framework for Transformation), which helps individual schools develop inclusive education curricula and provides resources for
parents and teachers through its website, swiftschools.org. “It can be really hard and really scary for parents to let a child with a
disability be included,” said Stonemeier, who has a son on the autism spectrum. “But we know with the right support and
services, it can be done and done well.”
KNOW YOUR RIGHTS
The Individuals With Disabilities Education Act (IDEA) exists to protect the rights of children. Children ages 3 through 21 who
fall into one of 13 specific disability categories are covered under the law, and there are five basic requirements that all education
agencies must follow:
• Every child is entitled to a free and appropriate public education.
• Education services must be provided in the best possible setting, and children should be placed in a general education classroom
whenever possible.
• Parents have a right to be involved in the planning of a child’s education, most notably through an Individual Education Plan
(IEP), which outlines academic goals and specifies support staff a child may need.
• Students must undergo evaluations every three years.
• Parents have a right to an impartial hearing if they feel their child isn’t receiving an appropriate education based on
identification, evaluation, or placement.
Reauthorization for IDEA has been delayed since 2011. The longer it’s delayed, the longer programs that could help spur more
inclusive education settings remain underfunded.
To support the reauthorization of IDEA, visit the National Education Association’s Legislative Action Center at
bit.ly/IDEAaction
Blurb and Pull Quote:
Mary Schuh, Ph.D., Director of the National Center of Inclusive Education at the University of New Hampshire’s Institute on
Disability, has seen proof of how inclusive educations benefit students. Sarah, one of Dr. Schuh’s former students with Down
syndrome, spent her entire school career in an inclusive education setting. After graduating from high school, where she
discovered a love of writing, Sarah is now taking classes at a local college and working in a law center.
“She has a totally typical life — she’s lived on her own, she’s had an internship at a local newspaper, she’s published a small
book,” Dr. Schuh said. “That’s because, throughout her entire life, she has consistently been held to high academic
expectations.”
Property of Global Down Syndrome Foundation
Down Syndrome World | Spring 2015
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Earthbound Angels
October 2015
Back to School & End of Summer Parties
LONGVIEW
TYLER
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Earthbound Angels
October 2015
Letter from the President
Recently a prominent British political leader was quoted as saying “Yes, we must support the disabled, but we must support ordinary
people as well.” Her actual words were a little different, but the accurate quotation makes the same point: that we can divide the
population between “ordinary people” and everyone else. Such language begs the question, “What is an ‘ordinary person’?” Many of us
have struggled with how do describe our children, siblings, loved ones, and friends with Down syndrome. If one person is normal, does
that make the other person “abnormal”? Even the preferred term “typical” suggests that the other person is “atypical.” I’m not sure what
the best solution to this problem is. If I am ordinary, perhaps that means that my son, who has an extra chromosome, is “extraordinary”!
Since he has more chromosomes that an “ordinary” human, does that make him “superhuman”?
Every summer the National Down Syndrome Congress holds a convention at which a wide variety of workshops offer information and
guidance on health, recreation, employment, education, housing, therapies, relationships, . . . for people with Down syndrome. Some of
the sessions allow self-advocates to speak to the rest of us. Self-advocates have their own sessions as do siblings of people with Down
syndrome. The dance and the self-advocates’ talent show are priceless experiences. One of my favorite characteristics of the convention
is that the people with Down syndrome are the ordinary people, the rest of us are the oddballs.
As a group, ETDSG offers scholarships to facilitate our members’ attendance at the NDSC convention. The main sessions of the 2016
convention are scheduled for July 22-24 in Orlando, Florida. As more details become available, they will be published on the NDSC
website (www.ndsccenter.org) and registration will open in Spring 2016. All ETDSG members interested in attending the convention are
encouraged to apply for scholarship funding. In order to allow our families to plan for the trip, we have set a February 1, 2016 deadline
for scholarship applications. Send a letter or email with the following information: who will be attending, why you want to attend, when
you attended last (if ever), and estimates for expenses for travel, hotel, meals, and registration. Scholarship recipients are expected to
report back to the group (usually at a general meeting) about their convention experience. Once we receive the applications, we will
inform the families about how much they will receive so that they can register and make reservations. We look forward to hearing from
you!
- Richard Johnson, Board President
PO Box 6604
Longview, TX 75608