september october 2018 connections

Volume 23 Issue 97 September/October 2018

CONNECTIONS

Building a network for individuals with Down syndrome, their families and the professionals who serve them.

KFC Coupon Books TWO Walks are Be er Than One!
Benefit DSG
Did you know that DSG is now hos ng TWO STEP UP WALKS? Our flagship walk
We are proud to partner with KBP Foods (KFC will be in Kansas City on Sunday, October 20th at Arrowhead Stadium. We are
Franchise) for their Charity Coupon Book thrilled to announce we have also added the Central Missouri Step Up Walk on
Drive! Purchase a coupon book for $1 at any Sunday, October 7th at the Hearnes Center parking lot in Columbia, MO.
local KFC restaurant between August 27-
September 30 and all proceeds benefit DSG. Funds raised at the Central Missouri walk will be used to hire a part me pro-
The book contains $40 in coupons for future gram coordinator to work in that area and provide age specific programming
visits. for individuals with Down syndrome, educa onal conferences and seminars,
sibling events, new parent breakfasts and more.

my.kcdsg.org/stepup2018 my.kcdsg.org/centralmostep2018

Encourage your family and friends to stop in Invite your family, friends, neighbors, colleagues and anyone who may be in-
and visit a KFC for lunch or dinner, grab some terested to join your team, donate and walk with us . Our fundraising goal for
great chicken, pick up a coupon book and sup- KC is $550,000 and our fundraising goal for Central Missouri is $50,000. Will
port people with Down syndrome. Great food you help us cross the finish line so DSG can con nue to provide vital programs
suppor ng a great cause is win win! and services to families in need?

Visit kcdsg.org and click on our step up walk tab to visit our team success page
to stay up to speed on great fundraising ps and important deadlines.

“Oh dear, she has Down Syndrome” That was
the first words I heard a er my daughter was
born. Here I was at 37 years old standing in a
delivery room with my beau ful wife. Our first,
three years earlier, was a wonderful li le boy
(Evan). Now here we were about to have a li le
baby girl!

Jo Ann Butaud We were in for a Planned C-sec on and I was being suited up for the Opera ng room. I was
Shawnee, KS wai ng for what seemed to be 30 minutes when a nurse rushed in the room and said,
“come on the baby is coming.” I was dazed as I entered the opera ng room only to see my
Mike Frazier wife lying unconscious on the table. I knew this was serious as I was listening to the numer-
Overland Park, KS ous doctors and nurses who were checking on her. Next thing I knew, the baby was out and
everyone seemed on edge.
John Melvin
Overland Park, KS My wife being unconscious on the opera ng table for a planned C-sec on in itself was trau-
ma c, as any husband can imagine. Then within minutes, a nurse walked over to me with
Joe Roos my daughter and said the words I will never forget: “Oh dear, she has Down Syndrome” to
Parkville, MO which I replied, “What does that mean”, She said, “she will be a li le slow.”

Chris Sorenson I don’t recall what occurred over the next few moments. My head was spinning with those
Prairie Village, KS two words going in circles. I was brought back to reality when this li le girl, Sophia, began
crying. I stared at her for some me and finally asked, “How do you know” I looked intently
Tom Wagstaff at her to see if I could comprehend what the nurse said, “look at her eyes and flap of her
Mission Hills, KS ears” but nothing really registered.

Connec ons is a bi-monthly publica on of The nurses removed Sophia from the room and the doctors con nued working to stabilize
the Down Syndrome Guild of Greater Kan- my wife. Off to the recovery room we went for two days with a code Blue and numerous
sas City. Please contact the office at (913) blood transfusions! That’s a whole other story. A er they took Sophia out of the room I
384-4848 if you have any ques ons about began feeling queasy and star ng swea ng when a nurse said I should sit down. During this
the contents of this newsle er or would
like to contribute an ar cle. me my thoughts were racing again a ques on running circles in my head: What is Down
syndrome? Well, as a 37 year-old father, I had no idea. Being inquisi ve, I needed to know
Disclaimer: The informa on provided is done so more.
through a variety of sources including names pro-
vided by members of DSG, networking, referrals by Three days later a nurse asked us if we wanted some informa on on Down Syndrome and
professionals, other agencies, mail adver sements, presented us with a “DSG new parent package.” She also asked if we wanted someone from
etc. DSG cannot a est to the quality or qualifica- the DSG to come in for a visit. The next day is when Amy Allison entered our life and reas-
sured us everything was going to be OK.
ons of the individuals or organiza ons described.
We encourage you to be a wise consumer and ask A er Amy le , I promptly pulled out the books from the new parent package and began
ques ons in order to make your own independent reading fact a er fact about Down Syndrome to my wife much to her dismay. And with
evalua on of u lizing the services described. We that, my head cleared. I decided that, whatever this Down syndrome was, it wasn’t going to
share informa on about research projects but in stop this family. As long as my li le princes Sophia was breathing and alive, that was all that
doing so, it is not reflec ve of any type of endorse- ma ered.
ment.
If only I could have known at the me the joy, laughter and tears Sophia would bring me,
those two words, Down syndrome, that nurse said to me would not have been so scary.

Con nued next page…….

DSG Pathways™ Program Poised to Change Lives

If you are a parent or caregiver of a child with Down syndrome With a combined 60 years of experience serving individuals with
between the ages of 4 and 20 years old, do you feel equipped to Down syndrome across the life span, this team can help you cre-
plan for a specific future for your child, teach the skills needed ate a long-term vision for your child while achieving meaningful,
for daily life independence, manage behavioral challenges, and func onal progress on short-term goals that ma er to you today.
con nually improve your child’s communica on skills? Evidence shows us that individuals with Down syndrome have
unlimited poten al when given proper support.
While your child may be receiving services in school, but what
about ongoing support for your daily life at home and in the These are forma ve years so an investment in services now can
community? Families have communicated to us that they need make an enormous difference in the quality of life later on in
more support in daily life and we have listened. DSG has not adulthood. Space is limited and DSG can serve 50 families per
only invited compassionate and knowledgeable therapists onto year. We are inves ng in your child's future and subsidizing the
our staff, but we have created a vitally important program with cost to administer this cri cal program. Mark your calendars for
your family in mind. We are commi ed to improving long-term the upcoming informa onal mee ngs and call today to express
outcomes for our families and helping you all create a path for your interest or request more informa on.
your loved one that leads to a meaningful, produc ve, and so-
cially sa sfying adulthood. Join us to learn more at our Pathways™ mee ngs
September 29th 9:00 AM‐10:30 AM DSG office
The Pathways ™ program is a transforma onal and comprehen- October 2nd 6:30 PM‐8:00 PM DSG office
sive program individualized to the needs of your child and your Register online: kcdsg.org/pathways
family. Across the year, your family can receive 50 hours of sup-
port from an interdisciplinary team consis ng of an Occupa onal
Therapist, Speech-Language Pathologist, and Board Cer fied Be-
havior Analyst.

DADS Corner Con nued…..

My biggest worry in being a father to Sophia has been hoping that others accept and treat her well. thirteen years later, I no longer
worry about this. Sophia is in the “popular girls group” at school and they all watch over her and make sure she is included in whatev-
er is going on.

I’ve o en wondered that if I could change Sophia into a normal everyday kid with a magic shot, if I’d do it. Every me, the answer is a
resounding NO! This li le girl who came into the world in such a trauma c fashion with the u erance of four confusing words, “SHE
HAS DOWN SYNDROME,” is the daughter every father would dream of having. A perfect li le Princess in every way. I will be forever
proud to be her dad. Submi ed by, Corey Backues proud father of Princess Sophia

EASTLAND FRIENDS

Hope to see everyone at the DSG Family Day at Weston Red
Barn Farm on Sunday, September 9th.

September 17 at 7pm Eastland moms will meet at Old Chica‐
go in Independence. The DSG will provide a por on of each
moms meal. Please RSVP to [email protected]

Watch more details for an Eastland Friends meetup at the
Enchanted Forest in Independence in October!

CONNECTANDO

AMIGOS LATINOS FLINT HILLS

Familias, tendremos junta el dia 21 de Sep embre de 6:00‐ The Flint Hills Group will be having a Fall Funfest at the Li le
8:00 pm en las oficinas del DSG. Tema sera sobre la caminata, Munchkins Pumpkin Patch, Alma KS the 3rd Weekend of Octo‐
se acerca la fecha y hay que prepararnos. Porfavor de confir- ber. More details are available on our FB Page—Flint Hills
mar a Yadira Murguia 913-563-8951 o a Brenda Quintana 816- Down Syndrome Families Group.
278-0219

D.A.D.S For ques ons about our group please contact Brianna at bnel-
[email protected]

Cornhole Bags Tournament Sept 20th at 6 pm Join us for a JOCO FRIENDS
friendly tournament in the DSG parking lot. We’ll randomly
draw names for teams and may the best DAD combo prevail! Couples Night Out!! On Sunday, Sept 30 from 3:00pm‐5:00pm,
Never played Cornhole? Come anyway and we’ll teach you. leave the kids at home and enjoy Happy Hour at Boulevard
Dinner provided by DSG. Please note we’re star ng at 6:00 in- Brewery, Beer Hall! Enjoy over 25 different Boulevard beers as
stead of the usual 6:30. Loca on: DSG 5960 Dearborn Street, well as house wines, tea and sodas. DSG will provide all the
Mission, KS 66202 appe zers and light snacks for the event. Everyone will be re-
sponsible for their own drink purchases. If you choose to stay
Hanging out at 810 Zone 6301 West 135th St, OP, KS Thurs past 5:00pm, last call is at 5:30pm.
October 18th at 6:30 This is the last DADS event of the year,
everyone will pay for their own meal. Looking forward to see- When arriving at the brewery, “The Nook” will be reserved for
ing you there! RSVP for DADS ac vi es to [email protected] the DSG. Come mingle for part or the whole me. We hope to
see you there! RSVP by: Sept 26th. *The max number of people
DOTTE FRIENDS for this event is 30. Please RSVP to ensure your seat at the bar.
Aimee at [email protected] or Emily at [email protected]
We are taking the summer off! Be sure to stay connected to
DSG families by visi ng the DSG Discussion Forum on Face-
book. Hope to see everyone at the DSG Family Day at Weston
Red Barn Farm on Sunday, September 9th. RSVP at kcdsg.org
Ques ons about DOTTE friends? Please contact Amy Lipnicky
at 913-558-6078 or Do [email protected].

LAWRENCE/ TOPEKA RURAL MISSOURI

FRIENDS FRIENDS

Birth – three playgroup for babies with DS on the first Tues. of We encourage families to a end the KC Step UP Walk on
each month from 9:30‐10:30am at TARC in our Children’s Play- October 20th my.kcdsg.org/stepup2018 or the Central Mis-
room. First date will be on 9-4-18. Families can come in through souri Walk in Columbia MO on Sunday, October 7th.
the main doors or through the playground doors my.kcdsg.org/centralmostep2018

Please RSVP for events to [email protected] or call (785) 506
-8616

MID‐MO FRIENDS

We encourage families to a end the KC Step UP Walk on October
20th my.kcdsg.org/stepup2018 or the Central Missouri Walk in Co-
lumbia MO on Sunday, October 7th. my.kcdsg.org/
centralmostep2018 Funds raised at both walks help to support
individuals with Down syndrome their families and community
groups like ours!

NORTHLAND BUDDIES ST. JOSEPH FRIENDS

Hope to see all of our Northland Buddies friends at the DSG Fami‐ HyVee Cooking Class, Saturday, September 29, 1 pm.
ly Day at Weston Red Barn Farm on Sunday, September 9th. RSVP Teens and adults are welcome for a focus on healthy grill-
online at kcdsg.org or by downloading the new DSG app and tap- ing and appe zers for tailga ng. Contact Stephanie
ping the Red Barn Farm le. Mefford at 816-262-2827 if you wish to a end.

We are s ll working on details for a trampoline park ou ng. Watch RSVP to Stephanie Mefford, (816) 262-2827 or email
our Northland Buddies page for more informa on! [email protected]

PEOPLE OF COLOR

Contact Morcie Whitley at 816-392-6558 for more informa on
on future ac vi es our community group will be hos ng. We’d
love to see your family at a future event!

TRI‐21

Tri-21 serves the Grandview Triangle, Raymore, Harrison-
ville area. We are currently seeking new volunteer leaders
to facilitate this group. Please contact Amy Allison at
[email protected] if you are interested in learning more
about managing this community group.

ABLE Accounts in Jeopardy

Without a big change, advocates are warning that a recently-
established vehicle to help people with disabili es save money
without risking their government benefits could be unsustaina-
ble. ABLE programs across the country desperately need an infu-
sion of more account holders, according to a le er sent to con-
gressional leadership this month from over 150 disability advoca-
cy groups.

Established under a 2014 federal law, ABLE accounts allow peo- the state treasurers’ group suggests it is “unlikely” that the num-
ple with disabili es to save up to $100,000 without risking eligi- ber of accounts will grow rapidly enough between now and 2021
bility for Social Security and other government benefits. Medi- to reach the goal.
caid can be retained no ma er how much money is in the ac-
counts. To date, 37 states offer ABLE programs, though many are “There is a cost associated with maintaining these accounts and
open to those with disabili es na onwide. with economies of scale, costs go down,” said Michael Frerichs
who serves as Illinois State Treasurer and co-chair of the Na onal
Under the law, however, ABLE accounts are only available to Associa on of State Treasurers’ ABLE commi ee. “Eventually we
people with disabili es that onset prior to age 26. Now, advo- hope they are self-sustaining.”
cates are calling on Congress to pass a proposal known as the
ABLE Age Adjustment Act that would increase the cutoff age to Heather Sachs, policy and advocacy director at the Na onal
46, drama cally expanding the number of poten al account Down Syndrome Congress, said that “uptake of ABLE accounts
holders. has been much, much lower than anyone expected.” Without
more accounts, she indicated that ABLE programs could fold
“Simply put, without increasing the ABLE eligibility criteria for leaving less compe on and higher fees. “The disability commu-
age of disability onset from prior to age 26 to prior to age 46 in nity has been told for decades ‘don’t put money in your loved
order to significantly expand the pool of individuals who can one’s name,’ so there’s a lot of skep cism out there,” Sachs said.
open ABLE accounts, the en re ABLE program na onwide is in “We’re doing a lot of educa on, but the bo om line is that the
jeopardy,” the le er states. biggest chance of bringing up the number of accounts to sustain-
ability is to increase the pool.”
The advocates cite alarming numbers from the Na onal Associa-
on of State Treasurers. The group, which represents state ABLE Disability advocates are pressuring Congress to pass the ABLE
Age Adjustment Act before the end of the year, holding regular
administrators and program managers, es mates that 390,000 mee ngs on Capitol Hill and call-in days are planned this sum-
accounts are needed by June 2021 in order for ABLE programs to mer. “With the help of advocates from across the country, I am
reach “bare bones sustainability.” op mis c about moving the bill forward,” U.S. Sen. Bob Casey, D-
Pa., the legisla on’s chief sponsor, told Disability Scoop.
At the end of 2017, there were only 17,000 accounts open across
the country. Given the rate of adop on so far, the analysis from

Help DSG Go Green! Download the DSG App Today to Stay Connected

DSG is taking the leap and going green! Because of the successful launch of our new app, you will see
fewer postal mailings from us moving forward. That means you will need to check in regularly on our
app to learn about upcoming events, programs and awareness ini a ves.

Visit your app store
Search “DSG”
Find our logo and download the app
Allow push no fica ons to receive reminders when deadlines are near for event registra on
First me users will need to register by clicking on the “Login” le.

The DSG app has the latest issue of Connec ons, all of our social media posts in one click and upcoming
events right at your finger ps. Download today and encourage your DSG friends to follow your lead!

Jessica’s First Job as a Pool A endant

Beginning a new job is nerve wracking for anyone. But for Jessica Brundige, it’s how she spent her
summer. Jessica has made huge strides in taking on responsibility and her parents are very proud and
encouraged about her future. Last spring her mother contacted the guild to see if they had a job op-
portunity that might work for Jessica. They had the perfect one, a pool a endant at a neighborhood
close to her home. Jessica was excited to begin working. Some of her du es include skimming the
pools, keeping areas around the pool clean and neat and helping residents get in and out of the
gates.

She says her favorite job is cleaning the toilets and she worked between 4 and 8 hours each
week. Jim, one of the residents has said that Jessica is the hardest worker they have. The pool is her
first real job outside of family or school. She loves to work and brags about having 3 jobs. Her other
job is working alongside her mom sewing medical supplies. In the fall she will be going to the Access
House program at Blue Valley where students will be going offsite to a re rement community to help
them out in their cafeteria.

Jessica's boss, Clint, said "Jessica has been a valuable part of our pool staff this summer. If it's on the Jessica is ready to head to
to-do list, I know it will get done on her shi ." This opportunity has been such a blessing for her and work at the pool!
has helped her parents to see the great possibili es ahead of her. A huge thank you to Clint at Blue
Valley Pool Management and the neighborhood for providing the opportunity for Jessica.

Self Advocates Toolkit Promotes Civic Engagement

The Na onal Down Syndrome Congress Self Advocacy group recently launched a
toolkit to help adults with Down syndrome be er understand public policy, how bills
are passed and how to become ac vely engaged in lobbying efforts. Individuals with
Down syndrome are encouraged to download the toolkit at nyurl.com/ndsctoolkit
Review the contents prior to reaching out to your legislators regarding specific bills
impac ng your lives.

Advocacy is the act or process of suppor ng a cause or proposal. It can include many ac vi es to help the people who make the poli-
cies and laws (elected officials) understand what you need such as media campaigns (like commercials or adver sements), public
speaking, calling your elected officials or tes fying before decision-making groups like school boards. Self-advocacy is learning how
to speak up for yourself, making your own decisions about your own life, learning how to get informa on so that you can under-
stand things that are of interest to you, finding out who will support you in your journey, knowing your rights and responsibili es,
problem solving, listening and learning, reaching out to others when you need help and friendship, and learning about selfdetermi-
na on. Self-determina on means you control your own life.

Self-advocacy is important so that you have the knowledge needed to succeed and are given the chance to par cipate in decisions
that are being made about your life. We are o en asked why being a self-advocate is so important. The ability to understand and
communicate your needs and wants to others is a skill all people need. A self-advocate with a strong sense of determina on can
have a meaningful impact on issues that are important to them by par cipa ng in public advocacy

Would you benefit from:
Special Needs Trust

ABLE Account Advisors
Loans for durable
medical equipment
Trustee services

NDSC Scholarship Recipients Gain Knowledge and Make Friends

DSG provided scholarship to several DSG families to a end the recent NDSC Conven on in Dallas
Texas. We know our members gain valuable knowledge and make life long connec ons when they
a end. Below is some feedback from a few of our scholarship recipients.
I am so thankful to have had the opportunity to a end the NDSC conven on in Dallas July 12-15.
I went with three other DSG moms/girlfriends so it was a wonderful mix of learning and fun.

The last NDSC conven on I a ended was when it was held in Kansas City in 2007 when my daughter, Noa, was one. I thoroughly en-
joyed it but I’ll be honest, it was overwhelming- hearing all the things I should or could be doing with her therapy, care, educa on,
planning for her future, etc. Now that she is 12 I was able to a end sessions that were more specific to her needs and to the needs of
our family.
My daughter was diagnosed with Au sm Spectrum Disorder (ASD) in November 2017 so I was excited that the conven on offered a
track of sessions specific to the dual diagnosis of DS-ASD. I a ended the 4 hour DS-ASD pre-conference, an Au sm Laws & Insurance
Coverage session, as well as a session on Medica ons & Psychiatric Illness in DS & ASD. Topics of other sessions I a ended included
financial informa on for caregivers, speech clarity in older children and young adults, and ps for transi oning into adulthood.
I sincerely appreciate the $500 scholarship from the DSG. I highly recommend families a end at least one conven on in their life-

me. You cannot beat the feeling of looking at the thousands of people surrounding you and knowing they are your people, your
tribe. No judgement, only acceptance and support. —Shannon Haney

I a ended the 46th Annual NDSC Conven on in Dallas and felt like it was a very educa onal experi-
ence. My son Kyle is 13 and will be star ng 8th grade this year. My focus centered on classes that
deal with transi on, more so with the financial aspect of suppor ng his needs but also providing
as much independence as possible. I learned a great deal about the ABLE Act and using it in con-
junc on with a Special Needs Trust Fund.
I also wanted to learn what I can do to make a difference in providing feedback and learning what
new changes are taking place in Washington DC. I was very impressed with all the speakers and
the level of knowledge each one possessed.
I was lucky enough to have a friend and teacher that a ended the conference as well. Cooper
Davis, son of Amy Davis a ended the conference. He was able to do the kids ac vi es and would-
n’t you know it, get his picture with some pre y awesome cheerleaders. – Tracy Higinbotham

Celebrate Down Syndrome Awareness Month in October

October may bring cooler weather and all things pumpkin, but it also brings 31 whole days to focus on celebra ng people with Down

syndrome. Some days feel like two steps forward and three steps back when it comes to discrimina on and lack of community aware-

ness and acceptance by others.

October presents a great opportunity to be PROACTIVE and educate your family and friends. Below is a list of suggested ac vi es for

your considera on. You don’t have to do something every day, just pick a few ideas and implement them. You never know who is

watching and will learn something important that can open the door to inclusion and acceptance.

 Write a le er to a newspaper about what you have learned from people with Down syndrome.
 Take great photos of your loved one and e-mail them to [email protected].
 Host a presenta on on Down syndrome at your school, church or civic organiza on.
 Host a screening of the Just Like You Down Syndrome Film.
 Post a fact, resource or video about Down syndrome every day on Facebook or Twi er.
 Sponsor a Dress Down for Down syndrome day and donate the proceeds to DSG. We have kits!
 Thank you teachers or therapists for all that they do and give them a DSG Awareness packet.
 Ask a business to donate a por on of sales to the DSG to promote Down Syndrome Awareness.
 Thank your physician for his/her support and provided a copy of the DS Health Care Guidelines.
 Contact DSG to request personalized bookmarks with picture of your child
 Ask your library to make a DS Awareness Month book display. DSG can provide you a le er with

book sugges ons.
 Ask you mayor to proclaim October Down Syndrome Awareness Month. We can provide you a sample proclama on.
 Visit kcdsg.org/awareness_month to download cover photos and facts to share on social media.

Email [email protected] to request DSG materials to help with the above sugges ons.

Extraordinary Friends Bring Great Joy—By, Ginny Pa erson

Meet Lauren and Jessica. These two are my best friends. Jessica has been in my life since we
were 3 and met in preschool. I met Lauren freshmen year of High School. Lauren and Jessica
have Down Syndrome, but in my eyes, I don't see that. I see girls who love to go out to eat (Red
Robin is the #1 choice), have dance par es, laugh more than anyone else I know and most of all
they have the most contagious smiles.

Growing up a lot of people asked why I was best friends with them. I would like to say my ac-
ons would speak for that answer. Who wouldn't want to be friends with someone who makes

you grow as a person. My passion was sparked from an early age of what I wanted to pursue in
my life. Jessica and Lauren kept that spark alive. Even through the hardest mes they kept it
and made my passion stronger.

Jessica and Lauren are only two of the people that drove me to want to be a Special Educa on teacher. They taught me so many life
lessons. Their resilience, strength, and love have made them the best set of friends anyone could ask for. They set a fire underneath
me that keeps growing to con nue to help people with disabili es.

Jessica—-You have pushed me to my limits some mes, shown me how to enjoy the li lest things in life, overcome my fear of roller
coasters. While all showing me constant love, pushing me to become a be er person. From having to chase you down Switzer because
you escaped, to riding my first roller coaster with you. We have done it all. On the hardest days I know a snapchat from you can make
me laugh. Your random FaceTime calls brighten my day. To your constant sass, laughter and jokes you try and pull on me.
Without Jessica and Lauren, I can 100% say I would not be who I am today. I will do anything for these two girls. They have given me
so much in my life. They have shown and taught me things; that I would have never learned without them.

Lauren Harding you are a blessing. I met you freshman year while being a peer tutor. There is no way to be in a bad mood when I am
around you. You instantly light up every single room you walk into; you always have that big smile on your face that makes everyone's
day. Our bond grew stronger sophomore year. Unfortunately the worst news hit us that year, your cancer was back. I remember the
hours we spent in your ny hospital room watching House on repeat and coloring. Something I learned while watching you fight for
your life was your love for people. No ma er your pain when someone you loved walked into your room you would flash you bright
smile and say their name.

HIRED Program Helps Teens Explore Jobs in the Community

This summer, DSG started the HIRED program for teens with
Down syndrome who were interested in exploring employment
opportuni es. The HIRED program had 4 par cipants, who each
had a one-on-one support person to help them in the employ-
ment environment.

The program lasted 5 weeks, with each class occurring on DSG is in the planning phases of extending the program into the
Wednesdays from 1-4pm. For the first hour, teens learned a new school year. The goal would be to begin the program around
job skill ranging from discovering their strengths in the workplace 3pm, mee ng directly at the business loca on, doing two hours
to filling out job applica ons and receiving phone calls from a of hands on training, then returning to the DSG office for one
poten al employer. They were then driven to a business where hour of employment instruc on, before ending class. The goal
they remained for 2 hours, learning hands on job skills in each would be to do this once a month, so as not to disrupt school
environment. For this round of HIRED classes there were five schedules.
businesses who partnered with DSG to host the teens on one of
the 5 days. Those businesses included KBP Foods (Kentucky Fried
Chicken/Taco Bell-KenTaco), McCrite Plaza, Streamline Insurance,
Waterway, and Blue Chip Cookies.

DSG is ac vely searching for businesses who are willing to host 4-
5 individuals with Down syndrome and their one-on-one sup-
ports for two hours on a single day. Businesses would need to be
available between the hours of 3-5pm. If you, or someone you
know, would be willing to host this group, please contact ju-
[email protected]. Spots will fill up, so please contact ASAP.

All four of the HIRED par cipants graduated from the summer
program, but some have stated they hope to con nue the pro-
gram next me it is offered in order to visit more businesses and
get more experience. Each par cipant will receive a report card
for the HIRED classes, which will be given to parents no later than
two weeks following the conclusion of the class. This gives ample

me to collect feedback from the businesses and compile it for
parents use when researching employment opportuni es.

It should be noted that all 4 of the individuals in the program
were rated as hirable by one of the 5 businesses. Many loca ons
were ready and willing to hire our par cipants. DSG is currently
s ll working with the companies to find the right fit for mes and
loca ons.

DSG Back to School Resources

Download DSG’s All About Me Booklet to complete and provide to
your child’s teacher. The booklet highlights your child’s strengths and
areas which can be challenging and iden fies mo vators and tasks
your child completes independently or needs help to accomplish.
Visit h ps:// nyurl.com/dsgallaboutme to print a copy.

DSG also has a helpful IEP Binder template for parents to keep track
of important documents throughout the year. Tabs and templates
are provided to organize your school documents each year. Visit
h ps:// nyurl.com/dsgiepbinder to print a copy.



An Inclusive Summer Through Sharing My Expecta ons
It’s funny how God chooses to fix things go en away with a lot in the past. When special needs. Fortunately, or unfortunate-

that are broken in your life. He has used people with limited experience with kids ly, I’ve had a lot of prac ce responding to

my daughter (who rocks an ex- who have a visible disability see them comments like these and I replied by calm-

tra chromosome) to help transform me walking through the door, they don’t know ly and confidently smiling and saying, “I

into a much be er version of myself than what to expect of them. “Should I carry understand where you are coming from,

what existed only 6 short years ago. them everywhere? Are they able to follow but she needs to learn how to behave

Had my children been born calm, compli- direc ons?” I’ve realized that it’s my job to away from me and I can’t think of a be er

ant and average, I probably would have let them know. way to do that than by giving her access to

been one of the first parents to ques on What can they do to redirect poor behav‐ places that her peers are welcomed. Also,
why children who were not like mine could ior and promote posi ve behavior? – For you don’t ask any of these other moms to
be included in classrooms and ac vi es. stay with their kids, right?” I don’t think

That, however, was not the case and I was my daughter, using “first/then” is huge. If she had considered that point of view be-
given children who would be considered she is having trouble a ending to a task, fore and thankfully the woman was very
“energe c”, “in need of redirec on”, and le ng her know that there is a different recep ve to my response and seemed to

“excep onal” (if we are sta ng things nice- ac vity coming up soon, but that she must understand fully what I was saying.

ly). complete her current task first is HUGE.

Her classroom teachers have also had Consistency – I think that the presence of

I am now a huge advocate of inclusion. great success with visual cues, so we also the visual materials (lanyard) carried by
How will my kids learn to behave appropri- provided a lanyard with familiar pictures the leaders goes a long way for my daugh-
ately in social situa ons if they are not for ac ons like “sit”, “quiet”, “walk with ter in legi mizing their authority as well as
given many opportuni es to observe and the group”, etc. giving her the comfort of something famil-
par cipate? For this reason, each summer, iar.

I have signed my daughter up for many Despite the rocky start, we ended on such
Vaca on Bible Schools and camps that are a successful note that I decided to
not specifically intended for children with preemp vely reach out to the rest of the
special needs. places where I had her signed up. I made a

In years past, I would just sign her up and Mo vators – No one works for free. They phone call to the Kalamazoo Nature Cen-
drop her off without le ng anyone know either expect a paycheck or a feeling of ter to explain our situa on. The director
she had special needs. For one, I didn’t sa sfac on at the end of a day’s work and there was clearly already commi ed to
want them to turn her down sight unseen, my daughter isn’t any excep on. Some- making camp “the best week ever” for all
but I also didn’t want them making as- thing as li le as an “emoji” stamp can go a kids, including those with disabili es. I
sump ons about her based on a diagnosis. long way in building posi ve behavior mo- sent her an email with pictures of the lan-
This caused a lot of frustra on on their mentum. On the back of the lanyard we yard, along with sugges ons. They put her
part and a lot of tears from what felt like also provide a “happy/sad” card to help in a group with a strong leader and she
rejec on and exclusion on mine. her understand how her ac ons are mak- rose the occasion. She felt so valued and
ing her teacher feel. If the teacher reports included. It really was “the best week ev-
This year, on registra on forms I added that she mostly stayed on happy, then my er”!
her dx, a few helpful hints, and a “please daughter gets a predefined reward when
call me with any further ques ons”. They, she gets home. There will always be people (probably sim-
however, did not call with further ques- ilar to the “me” of 6 years ago) who are
A tude – We can’t feel guilty or ashamed just not willing to make inclusion work, but
ons and our first VBS of the year was off for asking people to stretch their under- when we meet them we lick our wounds
to a rocky start. The leader of this VBS standing for our kids. When mee ng my and get back up and try again.
was, however, commi ed to making daughter’s 3rd VBS leader (the first two
things work for us. I quickly worked to were young teens who didn’t think they In the end, when inclusion works, every-
provide them with a full range of tools that were up for the job), she made the com- one wins. The leaders see the capabili es
helped us finish the week on a strong of a child with Down syndrome, the other
note. This mostly involved taking what students see that children with disabili es
worked for her in the classroom last year do belong in society, and my daughter has
and making it portable. one more social experience (without
mom) under her belt. We shall see what
A list of expecta ons of both my daughter the rest of our summer holds!
and the leader (most ideas credited to
author David Stein):

Presume competence – My daughter is ment that she felt *I* should be the one Reprinted with permission from Kathleen
smart. She knows to test the waters and staying with her and not her. It was a Mills
see how much she can get away with be- hur ul and frustra ng comment that
cause this isn’t her first rodeo and she’s made me feel, among other things,
trapped in the life of a parent of a kid with

First Registered Lobbyist with Down Syndrome

Kayla McKeon may be Washington's most unlikely powerbroker. As the first registered lobbyist
with Down Syndrome, the 31-year-old roams the Capitol advoca ng for the Na onal Down Syn-
drome Society. "She's an incredible asset to this organiza on," said her boss, Sarah Hart Weir.
"She's extremely ar culate. And she's quick on her feet." "And I'm not going to take no for an an-
swer," Kayla said.

They hired her for her communica on skills. "That too," Kayla said. And her charm. "You're good
at this," she said. It takes a schmoozer to know a schmoozer. But Kayla also has a certain sinceri-
ty that can turn almost any poli cian into pu y. She approaches New York Republican Rep. John
Katko. "I need your help," Kayla said. "Do you need a sponsor?" "I definitely need you." "Am I
surprised that she's in Washington, D.C., calling on senators and congressmen? Yeah," said Kayla's
father, Mark.

Her parents, Mark and Pa , say that although their daughter con nues to surprise -- Kayla never really let Down syndrome slow her
down. They say that even at 2, Kayla had already decided she would drive a car someday. "To pass the permit test we said, 'You have
to be able to read,'" Mark said. "So that gave her encouragement to knuckle down and start reading. And right now she s ll reads a
book a week." And she got her driver's license, too. She's now one of just a handful of people with Down syndrome to have a li-
cense. What about that parallel parking? "You don't want to know," she said. "That's challenging."

Today she does more flying than driving. A couple of mes a month she leaves her home in Syracuse for her office in D.C., where
Kayla is focused on passing a law that would make it illegal to pay people with disabili es anything less than minimum wage. She
says if it passes, it would be a monumental achievement – but a thrill, regardless, just to be part of the process. "I just love the feel-
ing of: Wow, I'm here, I'm making history," Kayla said. Hard to believe? "Oh yeah," Kayla said. Kayla McKeon, lily in the swamp.

Story by Steve Hartman originally aired on CBS News

Send Your Child to Kindergarten With Confidence

Are You Ready to Step Up?

We invite you to Step Up and sup‐
port the work of the DSG by par ci‐
pa ng in one of two Step Up Walks!

Join us in Columbia on October 7
Join us in Kansas City on October 20

my.kcdsg.org/stepup2018 my.kcdsg.org/centralmostep2018

KC TEAM TSHIRT DEADLINE! CENTRAL MISSOURI DEADLINE!

September 25th is the cutoff date to have the team name September 5th is the cutoff date to have the team name
printed across the back of your walk shirts. Be sure to get printed across the back of your walk shirts. Be sure to get
grandma, teachers, neighbors, hair stylist, co-workers and grandma, teachers, neighbors, hair stylist, co-workers and
friends all signed up by September 25! friends all signed up by September 25!

October 13th is the Team T-shirt pick up day at the DSG September 29th is the Team T-shirt pick up day at the DSG
office. 9AM to 1PM stop by the DSG office and drop off last office at 2415 Carter Lane, Suite 201 in Columbia, 10AM to
dona ons and pick up your Team T-shirts! 12PM stop by and drop off last dona ons and pick up your
Team T-shirts!

2018 Kansas City Step Up for Down Syndrome Walk Team Incen ves

A. Pick Your Tent Loca on at the Step Up ready when your team to arrives. Tents to E. Concierge Service at the Step Up Walk
Walk $500 Teams that raise $500 will be be dropped off at DSG on walk t-shirt pick $5,000 Teams that raise $5,000 will re-
able to reserve the spot where their per- up day, October 13. This level as includes ceive special concierge service. Your Step
sonal 10x10 pop up tent will be placed. everything listed above. Up Walk concierge will bring lunch to your
The team captain or a designated member team. Make a posi ve and stress free im-
of your team will be responsible for D. Fast Pass for Two $3,000 Teams that pact on your (and your guests) Step Up
se ng up the team tent. DSG will send a raise $3,000 will receive a Fast Pass wrist- Walk day experience with your private
link to the team captain so you can re- band for the individual with Down syn- concierge. No more wai ng in food lines.
serve your spot (parking lot row and stall). drome and a buddy to have fast access to Beverages (water), plates, napkins & uten-
all of the inflatables and mechanical rides sils will be delivered by the concierge.
B. Preferred Parking at the Step Up Walk offered. This level includes everything Lunch will arrive to your tent between
$750 Teams that raise $750 will be listed above 11:00am-12:00pm. Your concierge will
awarded three (3) preferred parking pass- dispose of all trash for your team. This
es for closer access to the event. Preferred level includes everything listed above
parking will be clearly marked in Lots B &
D. This level includes everything listed F. Professional Tent Set Up at the Step Up
above. Walk $7,500 Teams that raise $7,500 will
get a 20x20 tent for the day. This level
C. Tent Set Up at the Step Up Walk includes everything listed above
$1,500 Teams that raise $1,500 will have
their personal 10x10 team tent set up and

Thank You for Your Support!

Old Chicago Shoal Creek Supports

The staff at Old Chicago went above and beyond and
raised $2,480.55 which is just absolutely amazing!!
They donated back a por on of all food/drink sales,
hosted a raffle with fun items and auc oned off some
great packages to support DSG.

Thank you Prairie Band Casino and Resort and the bingo team
for suppor ng the Down Syndrome Guild of Greater Kansas

Host a Dress Down for Down Syndrome Day
to Benefit the Down Syndrome Guild

Do you and your co-workers/friends like
wearing jeans to work? Here is an easy
way to be comfortable all day AND to
also help those with Down syndrome.
Help spread awareness and display the
many gi s and talents of individuals with
Down syndrome by hos ng a Dress
Down Day! Call the DSG at 913-384-4848
for more informa on.

Wish for Wheels Giveaway Young Entrepreneur Supports DSG

HUGE THANKS to the amazing “THANK YOU SO MUCH” to eve-
staff from KC area Walmarts ryone that came out to support
who donated $25,000 to Wish Ariel at her lemonade stand this
for Wheels and spent their en- weekend! She raised a total of
$337.40 for our team in just 2
re day building and giving days and I couldn’t be more
away bikes to children in kinder- proud!
garten to second grade.
I am humbled by all the generosi-
We all remember the joy of re- ty displayed by so many people
ceiving our first bike and 35 DSG this weekend! Thank you all for
kiddos received bikes. We are so making my daughter’s dream of
grateful to have been selected running her own lemonade stand
as one of the chari es to part- such a tremendous success!!
ner on this amazing give away.

Non-Profit Org
U.S. Postage Paid

Olathe, KS
Permit No. 932

5960 Dearborn Street
Suite 100
Mission, Kansas 66202
913-384-4848
[email protected]