Earthbound Angels - East Texas Down Syndrome Group

Earthbound Angels Newsletter
July & August 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 H. Angus etdsgdirector@gmail.com
www.etdsg.org
Texas Legislative Session Ends with
BIG Opportunities
June 1st ended the Texas Legislative session until the next session begins in January
2017. There were many bills passed which were supported by the Texas Down
Syndrome Advocacy Coalition (TDSAC) including:
SB 1664 – Texas ABLE Act was signed by Gov. Abbott June 19th. Six months
since the federal ABLE Act passes, Texas became the 28th state to pass this incredible
legislation known as a national movement for people with disabilities. Texas will
begin to accept applications to establish ABLE accounts before the end of 2015. *We
will share the news on how and when you can set up your ABLE account.
ETDSG Calendar of Events
July 16
ROC at First Baptist
Longview, 6 pm
July
HB 1807 & SB 37 – Post Secondary Education for People with IDDs data
July 31
**Please take any opportunity to thank the legislators who sponsored, co-sponsored or voted for
any of these important bills. THANK YOU to all who contacted legislators to help pass these
important bills that effect people with Down syndrome. Whether you aren’t sure who your local
elected representatives are or you are a seasoned advocate, the NDSS National Policy Center’s
advocacy alerts make it easy for everyone to get involved and support Down syndrome legislative
activities. You can continue to influence state and federal decisions by contacting your
representatives with guidance from NDSS by registering for notifications.
Date and Time TBA
Tyler Teen & Young
Adult Dinner & Karaoke
Wright’s BBQ
6:30 pm
Aug. 1
Dads & Kids Event
Texas Freshwater Fisheries, Athens
10:30AM
Aug. 7
collection and a committee are now being tracked to help the transition from high
school to these college programs. See page 8 for more information.
SB 507 – Cameras in Self-Contained Classrooms (ex: PPCD & Life Skills)
Longview Teen Event
Contact Lisha Mack for
more information
lishamack@gmail.com
HB 3374 – Down Syndrome Information Act was sponsored by Rep. Geanie
Morrison and Sen. Eddie Lucio, Jr in the House and Senate, respectively. Health care
providers are now required to give current, evidence-based information about Down
syndrome, as well as contact information for local and national DS organizations, to an
expectant or new parent when the diagnosis is made. As families, we know this is crucial
in starting new families on the first step of raising a child with Down syndrome.
ETDSG General Meeting
Longview “Back to
School” Party
Pump It Up
6-8 pm
Aug. 14
Tyler “Back to
School” Party
Green Acres Baptist Church
Bowling Alley
5:30-7:30 pm
Aug. 17
ETDSG Board Meeting
Rachel Connor’s home, 6 pm
Visit www.votervoice.net/NDSS/register
to sign up for e-mail action alerts!
Earthbound Angels
July & August 2015
Back to School
Events
Next ETDSG
General Meeting
Thursday, July 16th,
6 pm
Tyler Area Back to School Party
Friday, August 14th, 5:30-7:30 pm
Green Acres Baptist Church Bowling Alley
Our Tyler area group members are invited to our End-of-Summer
bowling get-together. All ages are invited – whether in school or
not – and siblings are always welcome!
Dinner, drinks and bowling shows will be provided. Just bring your
socks and your sweet kiddos ( and socks for them too )
RSVP on our Facebook CONNECT Group or to Kelly Bunger at
ktbunger@hotmail.com
Longview Area Back to School Party
Friday, August 7th, 6-8 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 our scholarship recipient
families tell of their experiences and
what they learned at the National
Down Syndrome Congress Conference
in Phoenix last month!
Longview area families come out for some bouncing fun to
celebrate the end of summer together. Pizza and drinks will be
served. Make sure to wear socks or bring them with you.
RSVP on our Facebook CONNECT Group or to Tiffany Angus at
etdsgdirector@gmail.com
Book of the Month
From the ETDSG Lending Library
In this third edition of Yardsticks, Chip Wood calls even more strongly for
teachers and parents to honor children’s developmental needs, showing
that in the era of No Child Left Behind, “we are in grave danger of leaving
childhood behind.”
Submitted by Rachel Connors,
Librarian
To check out one of our books or
videos, please contact Rachel at
903-738-1156 or
reconnors2003@yahoo.com
A list of our materials is at etdsg.org
With warmth, humor, and deep reverence for children, Wood offers ageby-age narratives and easy-to-scan charts that clearly and concisely depict
children’s typical developmental characteristics. He shows parents and
teachers how to use this developmental knowledge to help children grow.
These “yardsticks” are not standards for children to live up to, but general
indicators to guide adult understanding of children’s growth.
This very practical book will help teachers shape curricula that support
children’s social and academic learning. It will help parents understand
their children’s
2 behavior at home and work with teachers to ensure that
school learning meets their children’s developmental needs.
Earthbound Angels
“About Me”
School will be starting back before
we know it. Children will meet
knew teachers, staff, classmates
and friends. There are other new
people children or adults with
Down syndrome are introduced to
throughout their lives as they are
more included in typical society.
July & August 2015
BOOK
Parents have found it helpful to use
a personalized book, brochure or
pamphlet to introduce their child
with DS to new people. Examples
of settings you can create these for
new teachers or classmates are
school, church, sports teams, dance
classes, or other activity groups. It
can help your child and new
friends understand their
similarities and not focus only on
differences. At the NDSC
conference they shared examples as
part of “Person Centered
Planning.”
At the July general meeting we
will share these examples. At the
end of July, we will share the
Word document templates you can
use to “fill in” text and pictures of
your child to specifically relate to
the setting you’re creating it for.
They will be e-mailed and posted
to our Facebook CONNECT
Group.
It’s important to include a message
from parents with contact
information to answer questions as
they arise through the year. We
hope these ideas will help your
child adjust to new situations with
the help from more understanding
peers and teachers.
P
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Earthbound Angels
July & August 2015
Changes to Texas Rules and Regulations
P
artners Resource Network hosted a webinar regarding rule changes
that became effective January 1, 2015. Texas rules have been changed to
align with IDEA, the Individual's with Disabilities Education Act.
Texas has launched a new website, built by
parents, for parents to help children with
disabilities and special health care needs.
Categories on the website include:
“Diagnosis and Healthcare”
“Insurance and Financial Help”
“Family Support”
“Education and Schools”
“Transition to Adulthood.”
Visitors can enter their ZIP code to search for
support groups, services, and events that are
specific to their region. The data provided on the
site has been vetted by parents, physicians, parent
organizations, subject matter experts, and state
agencies. Check it out:
https://www.navigatelifetexas.org
Highlights of Changes
• A school district must allow parents who cannot attend an ARD
meeting to participate in the meeting through other methods such as
through telephone calls or video conferencing.
• A summary of IEP/ARD meeting deliberations and decisions is no
longer required. Districts may still choose to include deliberations or
meeting minutes, but it is no longer required.
*Parents may wish to take a friend/ family member to the ARD to take
notes. Recordings of meetings are permissible.
• A signature page is not longer required. The district may continue to
use a signature page, but it is no longer required.
• Allowing committee members to indicate agreement or disagreement is
no longer required. If there is a disagreement in an ARD, only the parent
has the right to submit a statement of disagreement.
*If you do not state your disagreement at the ARD and make it known in
writing, they will assume you are in agreement.
• If the committee takes a recess because there is not mutual agreement
about all required IEP elements, the recess may now be longer than 10
school days by mutual agreement between the school and the parent.
• Upon receipt of a written request for an ARD committee meeting from
a parent, the school district must:
1. Schedule and convene the meeting, or
2. Within 5 school days, provide the parents with a written notice
explaining why the meeting will not be held.
*The school district must provide the parents with written notice of the
ARD committee meeting at least 5 school days before the meeting unless
the parents agree to a shorter time frame.
• Each school district must ensure that each teacher who provides
instruction to a student with disabilities:
1. has access to relevant sections of the student's current IEP,
2. is informed of the teacher's specific responsibilities related to
implementation of the IEP, such as goals and objectives, and of
needed accommodations, modifications and supports for the student,
3. has an opportunity to request assistance regarding implementation of
the student's IEP.
• Each school district must develop a process to be used by a teacher who
instructs a student with a disability:
1. to request a review of the student's IEP;
2. that provides for timely district response to the teacher's request; and
3. that provides for a notification to the student's parent or legal
guardian of that response. The full webinar recording is available at
www.partnerstx.webex.com. Click "View Event Recordings" on the
upper right side of the screen. www.partnerstx.org
(Reprinted with permission from Down Syndrome Guild of Dallas , May 2015 Newsletter)
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Earthbound Angels
July & August 2015
In the Spotlight….Alex Mack
Submitted by Lisha Mack, Alex’s Mom
One cold January evening earlier this year, 14-yr. old Alex and her parents Chris and Lisha Mack were seated
around the dinner table. The conversation turned to “New Year’s Resolutions” and Chris and Lisha stated the
usual… “lose weight, exercise more, make better choices, etc.” when Alex piped in with “I’ve got a New Year’s
Resolution and it’s to have dessert after dinner EVERY night!” Although her comment made her parents laugh, it
also made them realize that they needed to focus her more on healthy habits. And so the idea was born that they
would encourage Alex to do a series of video interviews focusing on healthy living and call them “Alex Mack’s
Health Tips 2015”. The thought was that she would learn something from the content of the videos that would
impact her in a positive way but ALSO she would practice her speech and social skills through the interview
process.
To date, Alex has completed nine interviews that have been posted on her father’s office Facebook page (Chris
Mack DDS) and some of which have been posted to Facebook at East Texas Down Syndrome Group CONNECT.
The interviews include:
#1 – Interview with her father, Dr. Chris Mack, a general dentist about keeping your teeth
healthy;
#2 – Interview with college athlete Abbey Bybel who plays volleyball for SMU about training
and dedication of playing a sport at this level;
#3 – Interview with Faith Pendleton, Alex’s long-term baby-sitter who is now a college student
at Texas State and has been on an amazing weight loss journey over the past 1 ½ years
and has lost over 200 pounds;
#4 – Interview with Ashley Slack, Alex’s hairdresser about keeping your hair healthy;
#5 – Interview with Dr. Andy Mack (Alex’s uncle), an oral maxillofacial surgeon about oral
cancer
#6 – Interview with Cam Reynolds, the Youth Minister at First Baptist Church Longview
about the importance of spiritual health;
#7 – Interview with Dr. Samir Germanwala, a cardiologist about recognizing and preventing
heart attacks;
#8 – Interview with Tess Iffland, a Yoga instructor, about the health benefits of Yoga;
#9 – Interview with Sophie Tibiletti, a college dance student studying at University of the Arts
in Philadelphia about the training required to study dance; and
#10 – Interview with Dr. Frank Tibiletti, an OB/Gyn doctor about how not to be afraid when
going to the doctor and what types of questions to ask (This interview has not been posted yet).
As a result of doing these interviews, Alex was asked to speak to the elementary school students in Spring Hill
about healthy eating at one of their assemblies and she now has a long list of professionals wanting to be
interviewed by her! The interviews are only 2 to 3 minutes long each and have been a good experience for her. We
hope you enjoy watching them! Stay tuned for more interviews coming soon!
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Earthbound Angels
Past Event –
Our Model Train Ride & Potluck was an enjoyable
picnic at the Gladewater home of gracious hosts,
Vance and Judy Nickerson. We would like to thank
the Nickerson’s for having us out to ride and drive
their model train that was a hit for kids and adults
alike.
July & August 2015
SumMer ActivIties
Tyler Area Teen & Young Adult Night –
Dinner &
!
st
Friday, July 31
6:30 pm
Wright’s BBQ in Tyler (8336 Paluxy Dr. - between Grande and Loop 49)
ETDSG is sponsoring this fun night! We will meet at 6:30 for
dinner and then karaoke starts up at 7. If your teen or young
adult (13+ please) would do fine just being dropped off in that
environment, you are welcome to bring them in and then
go. If you are going to drop them off, they are encouraged to
bring a peer so they’ve got one-on-one companionship. If
you’re not comfy leaving them you can stay and join the
fun! We won’t make you sing 
ETDSG Buddies, Siblings, and Dads Event!
Saturday, August 1st
10:30 am
Texas Freshwater Fisheries Center in (near) Athens
They have aquariums and many other things to see and do.
This will be a wonderful time for all! Additional details and
RSVP information were provided via email and Facebook.
Check out their website to see what it’s all about:
https://tpwd.texas.gov/spdest/visitorcenters/tffc/
If you have any questions, please contact Richard Johnson
at etdsginfo@icloud.com.
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Earthbound Angels
July & August 2015
Other Upcoming Events of Interest:
July 21st & August 18th – A.I.M. Group - Sponsored by The ARC, ETCIL & ETxADRC
12-1 pm, Downtown Coffee Shop, 1010 E. Tyler St., Longview; Awareness-InformationMotivations group to encourage greater independence in the lives of people with disabilities,
Monthly Meeting every 3rd Tuesday, July speaker – Lauren Davis with Therapy 2000
July 23rd – Longview MOMS Group Meeting
11 am; Location to be announced; Contact Stephanie Hacker for more information 903-5953942 ext. 6255 or stephanie.hacker@tmfhc.org.
July 24th & 25th - 25th Anniversary Celebration of the American with Disabilities Act –
Sponsored by ETCIL held in Tyler
Friday 8:30 am - 4 pm; 4713 Troup Highway; Informative seminars will be held Saturday 10 am
- 3 pm; ETCIL and Community partners will be setup at Broadway Square Mall in front of JC
Penney’s; To register, request special accommodations, or for more information, contact
Trevence Mitchell, Outreach Coordinator, (903) 581-7542 or tmitchell@etcil.org.
July 24th & August 28th – Dance Karaoke Night – Sponsored by ETxADRC
6-7:30 pm, Community Connections, 501 Pine Tree Rd., Longview; Designed for personal of all
abilities to encourage community integration – INVITE FRIENDS!
Monthly Activity every 4th Friday
July 27th – 31st – Camp Tyler “Best Week of Your Summer!”
Camp Tyler Outdoor School (CTOS) is open to campers entering the 6th grade; It’s a unique
camp experience with low camper to counselor ratio, experienced & certified specialty staff. The
goals are to build confidence, self-esteem & independence through experiencing the equine
program, canoe and swim fun, zip line, and Friday Family Day; Call 903-565-4475 to register.
August 6th – Dads of Children with Special Needs Support Group
7 pm, Clear Springs Restaurant, 6519 S. Broadway Ave, Tyler. RSVP to Clint Peery, EPIC,
Executive Director 903-509-3742 or clint.peery@epichealthservices.com.
th
th
August 11 & September 8 – BINGO Night – Sponsored by ETxADRC
4-6:30pm, Community Connections, 501 Pine Tree Rd., Longview; Designed for personal of all
abilities to encourage community integration – INVITE FRIENDS! Monthly Activity every 2nd
Tuesday
August 20th – Tyler MOMS Group Meeting
6:30 pm; place and location to be announced; Contact Stephanie Hacker for more information
903-595-3942 ext. 6255 or stephanie.hacker@tmfhc.org.
August 27th – Longview MOMS Group Meeting
6:30 pm; place and location to be announced; Contact Stephanie Hacker for more information
903-595-3942 ext. 6255 or stephanie.hacker@tmfhc.org.
2015
Run It Like It's Hot
Miracle Mud Run
Saturday, August 22nd
Lear Park Sports Complex
100 H.G. Mosley Pkwy. in Longview
Last year’s first fundraiser to build this
“Miracle” field (baseball field built specifically
for children with physical and mental
disabilities) raised more than $85,000! Let’s
come, volunteer and/or help spread the word
through Facebook and e-mail about this
important event.
The 5k course combines trails, 15 obstacles,
and of course ...MUD! Gates open at 6:30
am. Heats begin at 7:30 am. Pre-registration
required. Whether you are a veteran "mud
runner", or a weekend gym warrior, there is
something for everyone at this fun, familyfriendly event. Not only are you guaranteed
to have the time of your life, you'll be helping
special needs children have the chance to
experience the time of their life on the ball
field. Check it out & REGISTER at:
www.facebook.com/RunItLikeItsHot
www.runitlikeitshot.org
rd
September 3 – Dads of Children with Special Needs Support Group
7 pm, BJ’s Restaurant & Brewhouse, 210 W Southwest Loop 323, Tyler. RSVP to Clint Peery,
EPIC, Executive Director 903-509-3742 or clint.peery@epichealthservices.com.
May General Meeting
We would like to thank Laura Mattheis and Kate Langston from ETCIL for speaking to our group about how they help provide
independent living for people with disabilities. They provide classes on money management, cooking, computer, and other
important skills. Services are provided starting at age 15 through adulthood. They expressed the importance of an early start
especially as people transition out of high school. Go to their website to learn more: http://www.etcil.org/
Follow them on Facebook and Twitter to keep up with events and other information.
Congratulations Fred Hanley (Kathleen Bullock’s brother) for winning the $100 Walmart gift card at the meeting.
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Earthbound Angels
July & August 2015
Friday & Saturday, September 11 & 12
Collin College Spring Creek Campus –
Conference Center
2800 E. Spring Creek Parkway, Plano, TX
9:00 am – 4:30 pm
This annual conference if offered by Down Syndrome Guild of Dallas and offers a great educational opportunity from
international speakers from Dwon Syndrome Education International:
Professor Sue Buckley, OBE, BA (Hons), CPsychol, CSci, AFBPsS
Becky Baxter,BSc (Hons), MSc, CertMRCSLT
In depth tracks offering intensive training over 2 days for parents, teachers, teaching assistants, educational/school psychologists, social
workers, speech language pathologists, and other health and education professionals.
Early Years Track: Sessions focusing on research and evidence-based practices for speech and language, literacy, math, social development,
and behavior specific to infants, toddlers, and young children with Down syndrome birth to 5 years old.
School Years Track: Sessions focusing on research and evidence-based practices for speech and language, literacy, math, social
development, and behavior specific to older children and teens with Down syndrome 6 to 15 years old.
SLP Track: Sessions focusing on research and evidence-based practices for speech and language,
literacy, social development, and behavior specific to individuals with Down syndrome
birth to 15 years old.
Online registration open August 1, 2014
www.downsyndromedallas.org
214-267-1374
Post Secondary Education for People with IDDs
Since the passage of HB 1807 & SB 37, there will be more research and plans for post
secondary educational opportunities in Texas for people with IDDs. On May 29th the Texas
Legislature honored Access College Texas and its members including:
Austin Community College STEPS - http://continue.austincc.edu/steps
Houston Community College VAST Academy - http://vast.hccs.edu/
Texas Center for Disability Studies at the University of Texas at Austin http://tcds.edb.utexas.edu/
University of Texas at Austin Informal Classes -http://informal.utexas.edu/
These programs were honored for all the work they have done to promote post secondary
educational opportunities to all Texans with IDD's and in providing post secondary
educational programs in their communities. Access College Texas was formed Fall 2013.
They’ve given 15 presentations all of the state including Austin, San Marcos, San Antonio,
Houston, Dallas, and El Paso. We're excited to say there currently are over half a dozen
colleges and universities either planning on starting a program or are exploring the possibility
in the near future. Check out the current programs available at their websites above
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Earthbound Angels
July & August 2015
Buddy Walk Update
2015 BUDDY WALK COMMITTEE
Chair – TJ Angus
Co - Chairs – Cristi Gray & Lisha Mack
Set-up & Arrangements – TJ Angus
Entertainment – Cristi Gray
Treasurer – Susan Johnson
PR – Emily Dunshee & Jenny Dunn
Volunteers – April Wilson
Food – Wayne & Laura Howard
Registration – Tiffany & TJ Angus
T- shirts – Tara McHam
Board of Directors
President: Richard Johnson 903-935-5136
Vice President: April Wilson
Secretary: Jennifer Ferrell
Treasurer: Susan Johnson
Executive Director: Tiffany Angus
Board Members at Large:
Sat., October 10th, 2015
The ROC, Longview
Our first Buddy Walk meeting was held May 18th at Papacita’s Mexican
Restaurant. Many have volunteered to help, but we still NEED MORE.
Please make every effort to secure a new sponsor for our event. This is
the primary way we make our money that enables us to provide our
programs and services throughout the year. Also, utilize the registration
packets recently e-mailed by Richard to work on your team. There are
prizes awarded for the team that raises the most money and the one that
has the most number of registered walkers!
We will soon be in the process of distributing Buddy Walk posters so if
you can help with this effort please call TJ Angus at 903-399-9103 or
email him at eastTXbuddywalk@gmail.com.
Sonia Alonzo, Hispanic Contact/Spanish
Translator
Kelly Bunger, Tyler Area Contact
Rachel Connors, Librarian/Self Advocate
T.J. Angus
James Gray
Lisha Mack
Chad Newman
Kay Stout
Moving? New Phone Number? New Email?
Please update your information. We don’t
want you to miss anything! Contact
Tiffany Angus at 903-740-3843 or
etdsgdirector@gmail.com
Next Buddy Walk Meeting – Monday, Aug. 17th at 6 pm,
Start on Siblings and/or Best Friends Essays NOW!
The essay is geared towards getting siblings and/or best friends more involved
in our walk by sharing their favorite moments of time spent with their buddy
with Down Syndrome. Essay entries should be at least one paragraph long and
include a picture. Prize to be awarded is a $50 iTune card. Deadline for entries
to be received is October 1st. We will display the entries at the walk, unless
otherwise stated when entry is submitted. Please Mail to: ETDSG, PO Box
6604, Longview, TX 75608 or deliver in person at any of our meetings.
*USE THE ENCLOSED REGISTRATION FORM
TO COPY & SHARE!
Don’t forget to register early to guarantee your T-shirts sizes!
9
Editor’s Note:
May/June Newsletter correction –
Camp Courageous at Rockin’ C
Ranch in Lindale is closed. I
apologize for the miscommunication.
NEWSLETTER
SUBMISSIONS NEEDED!
Please share with me the great things
self advocates with DS are doing in
East Texas. Also, we want to keep up
with any events you know about that
would be important for our group
members. THANK YOU!
Earthbound Angels
July & August 2015
Letter from the President
Dear ETDSG:
Tigger does not understand the concept of personal space. On a recent family vacation,
while minding my business and enjoying my meal, I was accosted by Tigger. Before,
during, and since that trip Micah has been demonstrating a similar lack of appreciation for
personal space. Complete strangers are greeted with a “Hi!” and frequently the verbal
salutation is accompanied by an outstretched arm with an implied offer of a hug or, at least,
a hand to hold. All of us who share life with a precious person with Down syndrome know
the experience of seeing them transform total strangers into new friends. We were the first
targets of their amazing powers; we thought we had our lives figured out, we thought that
we knew what the future held (at least in general terms), and then they arrived with their
superpower of transforming everyone around them.
As a group we have that same mission. We know best the wonders that are possible when
we share our lives with Micah and _______________ [fill in the blank with your favorite
person/people with Ds]. Having been blessed by them, we have a responsibility to
communicate and extend that blessing to our community. We carry out that task when we
gather for the Spring Fling and the Buddy Walk and when we go about our ordinary
activities, proving that we are more alike than different (to borrow a phrase from the
NDSC). Recently a family that has received a prenatal diagnosis contacted our group
seeking information and, spontaneously, several of us leapt into action and reassured them
that their future is brighter than they might have imagined. Keep up the great work! We are
making a difference.
PO Box 6604
Longview, TX 75608
Above: Richard with Tigger at
Walt Disney World
Below: Micah & Sarah