Volume 23 Issue 95 May/June 2018
Building a network for individuals with Down syndrome, their families and the professionals who serve them.
THANK YOU KC DSG Embraces Lucky Few Tattoo
Kelly’s Westport Inn
The #LuckyFewTattoo has been sweeping the nation in recent months. Started
Kelly’s Westport Inn stepped up big this St. Pat- by mothers of children with Down syndrome to symbolize their journey, the
rick’s day to support the Down Syndrome Guild. tattoo is now popular with fathers, siblings, educators, extended family mem-
bers and advocates who have all found great joy and feel their lives are better
through their connection to someone with Down syndrome.
By splitting their cover charge from St. Patrick’s
day between The Down Syndrome Guild and
the Aidan Project, another local Kansas City non
-profit, Kelly’s was able to make a $10,500 do-
nation to the DSG.
The donation was made in honor of Charlie The three arrows symbolize the three copies of the 21st chromosome our loved
Anderson who is rocking an extra chromosome. ones with Down syndrome have and how we rise up and move forward when
we face challenges. We fly the highest after we have been pulled back and
Huge thanks, to Kelly's for living up to their long stretched, sometimes even more then we think we can bear.
time reputation of lending a giving hand and
keeping the spirit of camaraderie and fellow- Mica May launched the tattoo in honor of her son Jackson, who is rocking an
ship alive here in Kansas City! extra chromosome. She says "the tattoo is a physical symbol that there are
thousands of people in this community that are advocating, fighting for, chal-
THANK YOU KELLY’S WESTPORT INN! lenging, and shouting the worth of people with Down syndrome.”
DSG partnered with six KC Metro tattoo studios who put ink on over 200 of our
members and helped us raise over $2,500. Thank you to Illustrated Man,
Freaks on Broadway, Dragonfly, Testament, Righteous and Headless Hands
studios for sharing your time and talents to make these #LuckyFewTattoo days
It’s about 5am on Saturday morning and everyone is
asleep except my little man Crosby. He lets me know he is
awake and ready to start the day even though I am not
ready for the day to start. I grab him and bring him back
to our bed hoping he will lay back down for at least an-
other hour. Nope. He wants nothing to do with sleeping and insists I put on Sesame Street -
my savior because it gives me some time to collect myself and get ready while he sings and
bounces to the beat of every song. Eventually he starts trying to wake up mommy. She is
not budging so I take him for some blueberries and his morning medicine drink.
Jo Ann Butaud We wrestle on the floor and make silly faces just waiting for the sun to come out so we can
Shawnee, KS get outside and start our Saturday tradition. It’s a little chilly so I put him in a warm outfit,
get his stroller packed up in the car, and head to the farmers market which is already full of
Mike Frazier people enjoying the early morning weather. We make our first stop at the cookie stand
Overland Park, KS where the gentleman behind the stand is always eager to say “hi” to Crosby and every week
gives him a free cookie because he insists Crosby brightens the day with his contagious
John Melvin smile. We say “hi” to the farmers who know Crosby and we pick out the prettiest flower
Overland Park, KS bouquet to bring home to mom. As we make our way to the car we say bye to our friends
and head to John’s Space Age Donuts for donut holes and donuts for Sissy.
We get home and the girls are waking up and making their way downstairs where Crosby
greets them with a gigantic smile and loud laughter that cannot be ignored. Mom brings me
over a coffee and I sit back and watch big sister play with Crosby and enjoy that they love
each other so much. By now, Crosby is eager to go outside - so we make our way to the
swing. The day is warming up so we go for a long walk to get Crosby ready for his morning
nap - which is a blessing because it gives us time to plan out our day.
Joe Roos About noon Crosby is finally awake so we get him into the car for a day filled with family and
Parkville, MO events. We have a large family so it’s not uncommon to have anywhere from 3 to 10 kids in
one house - but in this environment, Crosby is king. All the kids want to play with him and
Chris Sorenson he definitely lets them know what he does not want to do but, for the most part, just loves
Prairie Village, KS being in the middle of the pack watching all his cousins do what crazy cousins do.
Tom Wagstaff At dinner time, we put Crosby in his dinner seat and grab his food and a drink that we think
Mission Hills, KS he is going to love. Nope! First course is not to his liking and after three tries, we finally hit
the jackpot and he is shoveling food in his mouth. We work on using his utensils and finding
Connections is a bi-monthly publication his mouth. He gives up on the fork, starts using his hands, and occasionally throws food to
of the Down Syndrome Guild of Greater our imaginary dog to clean up (that dog is usually me). After dinner we take Crosby directly
Kansas City. Please contact the office at up to the shower to hose him off.
(913) 384-4848 if you have any questions
about the contents of this newsletter or It is bedtime and we put Crosby in his most comfortable outfit and start reading bedtime
would like to contribute an article. books. After a couple stories, he is rubbing his eyes and we know he will nod off soon. We
read the last book, turn off the light and start singing one of his favorite songs until he is
Disclaimer: The information provided is done so out. As I shut his bedroom door I quietly tell him I love him and start prepping for my early
through a variety of sources including names call from Crosby tomorrow morning.
provided by members of DSG, networking, refer-
rals by professionals, other agencies, mail adver- 7
tisements, etc. DSG cannot attest to the quality
or qualifications of the individuals or organiza- I guess what I am trying to say is that having Crosby is just like any other kid. He loves to
tions described. We encourage you to be a wise play, laugh and be with his people. Down syndrome can be scary but when you really take
consumer and ask questions in order to make time to enjoy the moment, you realize he is just another kid that wants to do kid stuff.
your own independent evaluation of utilizing the
services described. We share information about Submitted by: Nicholas Orlando, Proud dad to Crosby
research projects but in doing so, it is not reflec-
tive of any type of endorsement.
Moms, Join us at Top Golf Overland Park at 7 pm on Monday,
May 15, 2018. Bay rental provided by the DSG.
For more information or to RSVP for events contact Laura at
For more information about our group please contact group FLINT HILLS
leader Yadira at [email protected]
D.A.D.S Flint Hills Community Group serves families in the Manhattan
KS and surrounding areas. Contact Brianna Nelson-Goff to learn
In May we’ll be meeting up for a T-Bones game. Date and time more about Flint Hills group at [email protected]
are still to be determined.
On Thursday, June 21 at 6:30pm join other KC area DADS for an FRIENDS OF JOPLIN
evening of kickball and pizza at Rosedale Park located at 4125
Mission Road, in Kansas City, KS. RSVP for DADS activities to For more information about Friends of Joplin contact Bekah at
[email protected] [email protected]
DOTTE FRIENDS JOCO FRIENDS
On May 7th we will be going to Pizza West at 5436 Roberts St JOCO Friends Community group serves DSG families living in
in Shawnee to enjoy the buffet from 5:00-7:00. DSG will pay for Johnson County Kansas. Please contact Aimee at
up to 4 immediate family members. [email protected] or Emily at [email protected] for more
information on upcoming group events.
Join us June 14th at 6:00-8:00 for a round of mini golf in
Parkville. The DSG will pay for up to 4 immediate family mem-
bers. RSVP to [email protected]
Questions about DOTTE friends? Amy Lipnicky at 913-558-
LAWRENCE/ TOPEKA RURAL MISSOURI
Come play with us! TARC is hosting a playgroup for children birth to For more information about the group and upcoming
three years of age who have Down Syndrome. events please contact: [email protected]
Mark your calendars: May 1, 2018 from 9:30-10:30 a.m. at TARC’s
Room of Endless Possibilities at 2701 SW Randolph Ave.
RSVP for events to [email protected] or call (785) 506-8616
MID-MO FRIENDS ST. JOSEPH FRIENDS
Welcome new leaders Jill and Dan Piscopo! Are you interested in Join us Saturday, June 30 at 3 pm at the home of Jaxson
joining the Mid-MO Friends community group? Email Jill at Kennedy, 10901 SW Hemple Rd, Stewartsville, for a swim
[email protected] for more information. This party and barbecue.
group serves Sedalia, Warrensburg, Whiteman AFB and the sur-
rounding areas. Please bring a side dish to share, meat and drinks will be
furnished. Contact Stephanie Mefford if you plan to attend,
NORTHLAND BUDDIES [email protected], 816-262-2827 or sign up with our
Northland Buddies is under new leadership. Thanks to Nicole Wal-
lace for stepping up to lead this amazing group. Watch for details
coming soon on 2018 events. Please contact Nicole at
[email protected] for information or to suggest
PEOPLE OF COLOR
Contact Morcie Whitley at 816-392-6558 for more information
on future activities our community group is hosting.
Tri-21 is looking for new leadership. This group serves Ray-
more, Grandview, Harrisonville and the Peculiar area.
Please contact [email protected] if you would like more infor-
mation about leading the group
New Child Care Center Serves Children With Special Needs
Emma’s Place is designed to meet the unique learning and support needs of children with excep-
tionalities. They provide before/after school care, summer care, professional development day care
and respite nights. Staff help children with intellectual disabilities work on critical developmental
skills in a fun and safe environment. All staff are trained in working with and caring for children with
special needs and the facility also employees therapists and professionals in a wide variety of relat-
Tuition at Emma’s Place includes low staffing ratios with 1 staff person for every 5 friends. Individual 12635 Hemlock Street
plans are completed for each child outlining their behavioral, sensory, dietary, medical needs and Overland Park, KS
how to best address those needs. The center is filled with sensory friendly play areas. Toys, fidgets (913) 940-9401
and activities are provided with sensory needs in mind. Life skills and social skills instruction will also
take place regularly as kids are taught to make their own snacks, take turns and make good choices
for leisure activities.
Music therapy, art therapy, movement classes and daily speech and OT activities will help keep your
child moving and thriving. Full day, half day, drop in and summer rates are available. Summer full
day rates include breakfast, lunch and 2 snacks. There will be field trip and other activity opportuni-
ties made available in addition to regular care services. Additional activity fees may apply.
Daily drop in rate full day summer $90 Daily drop in rate half day $50
Weekly rate for 5 full days summer $375 Weekly rate for half days summer $225
Learn more about Emma’s Place and register for care here: emmasplacekc.com Founder, Heather Barboza
and her inspiration Emma!
I Can Bike Camp
Each week of camp is geared to a specific age range and a set We understand that the vast majority of people with
of diagnoses so that each camper is in a cabin with friends disabilities never have the experience of independent-
similar to themselves. Every activity is adapted so each per- ly riding a conventional two-wheel bicycle during their
son, regardless of ability, can participate. We match our lifetime. Research shows that over 80% of people with
campers with a one-on-one trained volunteer. Autism and 90% of people with Down syndrome never
Camp Barnabas has a fully staffed medical facility with on- experience this thrill. Defying these odds is why we
site nurses and doctors to assist with medical needs 24/7. exist!
Cost to attend is $775. Camper scholarships are available
Camp Barnabas at Teas Trail
Purdy, MO 65734
Camp Barnabas Table Rock Lake
1380 Eternity Lane
Shell Knob, MO 65747
REGISTERNOW! Campbarnabas.org Kansas City Camp
Topeka Camp When: June 4th-8th
[email protected] (417)476-2565
When: June 4th-8th
Where: Central Park Where: Blue Valley Recre-
Community Center 1534 ation Center at Hilltop
SW Clay St. Topeka, KS located at 7720 W.
66604 143rdStreet Overland
Park, KS 66221.
How to Register: email
Mary at How to Register: To regis-
[email protected] ter email Melissa at
Making Healthy Cooking At Home Accessible for Everyone
Look, Cook and Eat (LCE) is a digital how to cooking magazine designed for people with intellectual disabilities to help promote an
independent lifestyle. LCE is a one-of-a-kind membership-based website designed for people with intellectual disabilities to help
teach cooking, a valuable life skill. We create simple recipes using easy-to-find, good-for-you ingredients and basic tools. We hope
that users learn tips and techniques that will help them create healthy, memorable meals for themselves, their families and
Our long-term goal with LCE is to create a sustainable business that will provide employment opportunities for individuals with
disabilities as well as those who are passionate about creating an inclusive community.
If you’re interested in learning more about look, cook and eat visit their website at https://www.lookcookandeat.com/. Online you
can sign up for a subscription or gift a one-year, $30 subscription to Look, Cook, and Eat. Each subscription features 6 issues with 9
delicious menus in every issue, viewable on your computer or tablet.
You’ll also be able to see a free sample menu and try the program at home from their website. You’ll also be able to read reviews
from self-advocates, dieticians and schools that are have used the program.
Understanding Moyamoya Disease
Moyamoya disease is a neurological disorder that involves the rotid arteries. One is a direct bypass usually involving an artery to
progressive narrowing of two of the major arteries supplying the scalp, and it is often called a superficial temporal to middle
blood to the brain. Those arteries are the internal carotid arter- cerebral artery bypass. In this procedure an opening is made in
ies, on each side of the brain. As a result of this process small the skull, and a branch of the superficial temporal artery is sewn
blood vessels form around the base of the brain to try to supply directly, using high magnification and very tiny sutures, to a distal
the blood to the brain and compensate for the decreased blood branch of the middle cerebral artery, thereby providing immedi-
supply. When an angiogram is completed these new vessels ap- ately more blood to the brain.
pear as a whitish “puff of smoke”.
The second procedure is called an indirect bypass. In this proce-
Moyamoya is a Japanese word that means something “hazy just dure the same scalp artery is dissected out of its normal place,
like a puff of smoke drifting in the air”. A high incidence of this and after the skull and covering of the brain are opened, it is su-
disease is found in the Asian population. It occurs a bit more tured directly to the surface of the brain without a direct connec-
often in females and accounts for about 6% of the strokes in child- tion. Within a variable period of time but often by a year after the
hood. However it can also develop in adulthood. There are a procedure, the vessel develops its own small collaterals into the
number of genetic syndromes that put the person at risk, brain thereby providing enough blood to make up for the nar-
throughout the lifespan, for moyamoya syndrome and the popu- rowed carotid artery and branches.
lation with Down syndrome are at that higher risk to develop this
disease. When it develops secondary to Down syndrome, or an- There are a number of factors that determine which procedure is
other genetic syndrome, it is more likely to be called moyamoya performed by the surgeon. These procedures are now the only
syndrome. Symptoms can be transient or permanent. treatments that reduce the incidence of stroke in the population
with moyamoya syndrome.
These include weakness or a sensory disturbance on one side of
the body, changes in speech or vision or gross motor changes like If your child/adult has progressive cognitive decline, headaches or
a stroke. It also includes temporary stroke like symptoms (called stroke-like symptoms or if their behavior makes a remarkable
TIAs), seizures, severe progressive headaches or progressive cog- change please ask your provider about the possibility of investi-
nitive or learning impairment. Studies that can diagnosis this dis- gating moyamoya syndrome.
order include CTs and MRIs of the head.
Authors: Moya Peterson, PhD, APRN, Director of the Adults with
The treatment of this syndrome involves neurosurgery aiming to Down Syndrome Specialty Clinic KU Health System
provide more blood flow to the head from alternative sources.
There are two types of “bypass” procedures that are used, be- Paul Camarata, MD Associate Professor & Chairman, Vascular &
cause they involve bypassing the usual flow of blood up the ca- Skull Base Neurosurgery, KU Health System,
Community Support for the Down Syndrome Guild
Local KFC restaurants sold coupon books throughout Our friends at Kendra Scott hosted two give back parties
March. This promotion raised over $22,000 to support for WDSD and donated over $1,500 to the DSG. They also
DSG’s vital programs and services. Huge thanks to KBP invited four young ladies with DS into the stores to design
foods and the employees of KFC for this contribution.
and make their own piece of jewelry at no charge!
Thank you Sacred Heart staff and DSG parents Tim and Morgan Bonnell Northwestern Mutual recently
students! They raised $1,000 by hosting launched elismiles.com apparel on donated $1,000 in honor of DSG
a Dress Down for Down Syndrome day Member Noa Haney and her family.
3/21. Proceeds from sales will benefit
in honor of their friend Skyler. DSG and LuMind DS Research!
Cerner employees Rhys and Neely Gay lead a CommunityWorks team to raising $700 from t-shirt
sales on World Down Syndrome Day. Their donation to the DSG of KC was made in honor of their son Everett who has DS.
Down Under for Down Syndrome Tournament May 27, 2018
Enjoy the soon to be warm weather and give back to
the Down Syndrome Guild at the same time during
the Down Under for Down Syndrome Tournament at
beautiful Rosedale Park. This is a singles disc golf
tournament which is open to players of all ages and
ability levels. There is a men, women and junior divi-
sion so the whole family can join in the fun!
2018 Player’s Pack includes:
Putter in Electron Firm Plastic
Midrange Driver in Plasma Plastic
Fairway Driver in Plasma Plastic
Retail value over $60!
For each player registered a donation will be made
to the Down Syndrome Guild of Kansas City.
Player Division and Entry Fees:
$30 Women’s Casual $30 Men’s Casual
$30 Juniors $30 Player Packs Only
Missouri State Offers New Program for Students with Disabilities
Promoting Opportunities for Work, Education Upon completion of the program grad-
and Resilience is the core focus of a new pro- uates will earn a Bear Power certificate
gram offered at Missouri State University. Bear and will have the experience of com-
POWER is a two year, five semester program pleting mandatory internships on cam-
geared towards providing individuals with intel- pus and in the community.
lectual and developmental disabilities the op-
portunity to continue their education after high The application for next year’s enroll-
school. ment ended on May 1, but for more
information on how to apply in the fu-
With small cohort sizes of ten students each class ture and to follow the launch of this new
of MS Bears will strive to maintain academic program in it’s first year subscribe to the
standards and prepare for employment while liv- Bear POWER blog and follow them on
ing independently on campus. In addition to 12 Facebook.
credit hours of specialized courses and internship experiences
participants will register to audit two regular academic courses The Bear POWER mission is: “To effectively utilize existing cam-
to attend alongside their typically developing peers. Missouri pus and community resources to create an inclusive academic
State student volunteers, also known as Bear Blazers, will serve college program that generates individual outcomes for stu-
as established peer mentors to help Bear POWER students suc- dents with intellectual disabilities in the areas of education and
ceed both academically and socially. employment.”
To learn more about the program visit the website at https://www.missouristate.edu/bearpower/
What is the National Parks Access Pass? A free, lifetime pass—
available to U.S. citizens or permanent residents of the United
Sates that have been medically determined to have a perma-
nent disability that provides access to more than 2,000 recrea-
tion sites managed by five Federal agencies. The pass includes
access for the individual and those in a the single, private, non-
commercial vehicle they use to enter the park. It also provides
the individual with the pass the opportunity to obtain addition-
al discounts on fees or other recreational activities within the
Where can I get a pass? You can apply for the pass online, via
mail or in person. There is $10 processing fee which can be
waived if the individual applies for the pass in person at a feder-
al recreation site. Locally, you may visit the Harry S. Truman
Presidential Library and Museum (223 North Main Street. Inde-
pendence, MO 64050 to apply for free.
What do I need to apply for the pass? To apply for the pass in
person you must have proof of residency and documentation of
Resources for Healthy Relationships and Growing Up
Puberty, sexuality and relationships can be difficult topics for families and caregivers to discuss with their loved ones with Down
Syndrome. The following resources are meant to educate and empower you as you address these critical topics. Several of the
books mentioned below are available for purchase from the Down Syndrome Guild of Kansas City office.
Teaching Children with Down Syndrome about their Bodies, Circles Relationship APP:
Boundaries, and Sexuality by Terri Couwenhoven, M.S.
The circles program is a technology resource that uses the Cir-
This book is a comprehensive cles VideoModeling Curriculum to teach social and relationship
guide to sex education for boundaries, including relationship specific social skills. Using
people with Down syn- behavioral psychology and special education techniques it
drome. It includes advices on teaches individuals about intimacy and relationships in a way
topics such as body aware- that can be generalized to home, school and community.
ness for all ages, personal
hygiene, norms of affection For more information about the circles program visit https://
and puberty-related changes www.stanfield.com/product/circles-curriculum-bundle-w1037-
in the teenage years. It fo- 3/
cuses on taking a proactive
approach to these some-
times challenges issues.
The Girls Guide to Growing Up &
The Boys Guide to Growing Up by Terri C. Couwenhoven, M.S.
Written at a third-grade reading level these books about the
internal and external changes of puberty, personal care, privacy
and safety are aimed at giving teens the opportunity to be the
one to read up on the physical and emotional changes they’re
experiencing during puberty. It includes age-appropriate facts,
realistic illustrations, learning activities, photos and a Q&A.
Boyfriends & Girlfriends: A Guide to Dating for People with
Disabilities by Terri C. Couwenhoven, M.S.
DSG has copies of all the books listed here for sale at our office at This book covers many of the
a discounted rate. Contact [email protected] to request a copy you key questions individuals with
can pay for and pick up at the office. You can also order these Down syndrome may have
books online at woodbinehouse.com about dating including: how
to know if you are ready to
start dating, how to meet
someone and begin dating,
how to deal with feelings and
crushes, and how to manage
relationship problems . It can
serves as a simple guide for
the dos and don’t s of dating
while validating normal, age-
appropriate desire for com-
panionship and romance.
Step Up For Down Syndrome Walk October 20th
The Step Up For Down Syndrome Walk will take place at Arrowhead Stadium on Saturday, October
20, 2018. Save the date on your calendar and plan to join 10,000+ people out at Arrowhead Stadi-
um as we celebrate our friends who are rocking an extra chromosome. This family festival is fun
for all ages and sure to put a smile on your face. Make a team to celebrate your loved one and
help raise funds to support DSG’s world class programming.
Step Up Walk provides the entire community the opportunity to celebrate
individuals with Down syndrome and their families. The event promotes the
acceptance of all people with Down syndrome. There are over 280 Down syn-
drome walks held worldwide. Kansas City is proud to be home to one of the
largest walks in the nation! In 2017, we welcomed 324 teams consisting of
8,500+ participants and raised over $455,000!
Contact [email protected] for more information
on making a team, sponsorship opportunities or
to request promotional materials to help you
meet your fundraising goals! We can’t wait to
Tee Up for Down Syndrome Golf Classic September 10th
The Tee Up for Down Syndrome Golf Classic will be held on Monday September 10, 2018 at the prestigious and beautiful
Shadow Glen Golf Club in Olathe, KS.
The four man shot gun scramble will tee off at 10:00 AM. Registration, shopping in the concept store (featuring Titleist
equipment and Footjoy apparel), breakfast, raffle items, and bloody marys beginning at 7:30 AM. The first-class golf tour-
nament is an opportunity to THANK clients and co-workers, while simultaneously, providing awareness and contributions
to the Kansas City Down syndrome community.
All golfers will enjoy a great day of golf and will receive VIP treatment.
Bag service upon arrival
The opportunity to win a car For golf sponsorship information please
Holes contests with premium prizes call our office at (913)384-4848.
Meeting & playing with our self advocates
Food and drinks throughout the day
Cocktail reception, raffle drawing and tournament winner announced after play.
NON PROFIT ORG
US POSTAGE PAID
PERMIT NO 932
5960 Dearborn Street
Mission, Kansas 66202
Unlimited game play, rides and buffet provided. Attendees 5 and under will be asked
to share a game card with parents. Go Karts and zip line are on your own.
THIS EVENT IS CO-SPONSORED BY THE PUJOLS FAMILY FOUNDATION
RSVP BY JUNE 15TH ONLINE AT KCDSG.ORG