Volume 24 Issue 100 March/April 2019
Building a network for individuals with Down syndrome, their families and the professionals who serve them.
Celebrate World Down KC Step Up Walk Saturday October 26th
Save the date and plan to join us for one of the largest celebra ons for people
March 21st is World Down Syndrome Day as with Down syndrome in the world! This family fes val is fun for all ages and
people with DS all have a third copy of their sure to put a smile on your face. Make a team to celebrate your loved one with
21st chromosome. DSG is encouraging our Down syndrome and help raise funds to support DSG’s vital programs and ser-
members to par cipate in random acts of vices serving families across the lifespan.
kindness to celebrate their loved ones.
Online registra on OPEN NOW
T-shirt deadline 5 PM Sept. 25th
T-shirt pickup 9AM-1 PM Oct. 19th
Top fundraising deadline 1 PM Oct. 19th
Step Up Walk Oct. 26th
Online dona ons close Dec. 1st 2019 Shirt Design
Visit: kcdsg.org/wdsd ONLINE REGISTRATION OPEN: MY.KCDSG.ORG/STEPUP
Visit the DSG website to download RAK cards Contact [email protected] for more informa on on making a team, spon-
and a list of suggested kind acts your family sorship opportuni es or to request promo onal materials to help you meet
can do. Print and leave one of the cards be- your fundraising goals! We can’t wait to step up for Down syndrome at
hind with a note on the back about your Arrowhead Stadium on October 26th.
loved one with Down syndrome. Create a
movement of kindness for one another and
be sure to share your pictures on social me-
dia for others to see.
Understanding the Journey of Down Syndrome
We have probably all seen the poem by Emily Perl
Kingsley tled “Welcome to Holland.” Twelve years
ago, February 13, 2007 to be exact, my trip to Hol-
land began...although life with Down syndrome is
more of a journey than a “trip.” It wasn’t a trip I
had planned and didn’t know I would be on un l
a er my son was born. I immediately wanted to
turn back or wake up from what I was sure must be
the worst nightmare a parent could experience. As
the mother of a child with DS, I have shared many
of the same experiences on this journey as other parents; but as a researcher, I have also had
the privilege to learn about and study the experiences of parents on this journey and to bring
voice to those experiences. In 2009, a colleague and I started a na onal research study to
understand the impact, par cularly the posi ve aspects, of paren ng a child with Down syn-
drome (DS), as well as to iden fy the various components of this journey for families. The
project includes data from 650 parents that explores the journey to resilience and hope ex-
perienced by families with a member with DS.
Jo Ann Butaud We have focused on iden fying the key resilience factors in families who have navigated this
Bob Fagan diﬃcult transi on and provided empirically-based informa on and resources for families
Amy Fauss facing this journey in the future. While our research has primarily been published in academ-
Mike Frazier ic research journals, we have just completed a book for family members of and professionals
working with individuals with an intellectual and developmental disability (IDD) diagnosis,
Deborah Kass which was released in January 2018.
John Melvin It is our hope that this book will have a signiﬁcant impact on the disability community, be-
Joe Roos cause the publica ons in this area o en are not research-based. Many of the current main-
stream publica ons for parents focus on either the many problems facing children with DS or
other IDD diagnoses in technical, medical language, or they are comprised of stories from
parents that are not based on empirical informa on. Our goal in developing this book for
professionals and parents of children with an IDD diagnosis was to make this long-term pro-
ject of beneﬁt to the broader IDD community, including parents, caregivers, professionals,
and others working with children and adults with intellectual and developmental disabili es.
Chris Sorenson The ini al impact of receiving a Down syndrome diagnosis is o en characterized by shock,
fear, sadness, anger, grief...the whole range of human emo ons. However, these types of
Connec ons is a bi-monthly publica on of responses are o en considered normal given the circumstances of adjus ng to a diﬀerent
the Down Syndrome Guild of Greater Kan- life than was originally imagined. Paren ng a child with Down syndrome involves a process of
sas City. Please contact the oﬃce at (913) readjus ng expecta ons, seeking out resources and supports, and iden fying a new future.
384-4848 if you have any ques ons about
the contents of this newsle er or would This paren ng journey is ﬁlled with challenges, like any other paren ng experience, but is
like to contribute an ar cle. o en described as life changing in very posi ve, meaningful, and o en unexpected ways.
Ul mately, there are no guarantees with any child, and paren ng a child with DS is truly
Disclaimer: The informa on provided is done so more similar than diﬀerent than raising a “typical” child; and at mes even be er than one
through a variety of sources including names pro- could imagine. Twelve years ago, a chromosome changed my life forever—and I’m so glad it
vided by members of DSG, networking, referrals by did!
professionals, other agencies, mail adver sements,
etc. DSG cannot a est to the quality or qualiﬁca- More informa on on the book here: nyurl.com/IDDroadmapbook
Briana is a professor at Kansas State University. She and a colleague at Texas Tech have
ons of the individuals or organiza ons described. conducted research, workshops and educa onal programs while collabora ng on a na on-
We encourage you to be a wise consumer and ask al research study on the posi ve aspects of paren ng a child with Down syndrome.
ques ons in order to make your own independent
evalua on of u lizing the services described. We
share informa on about research projects but in
doing so, it is not reﬂec ve of endorsement.
Director of Behavioral Services Joins DSG Team
Megan DeBoom volunteered for DSG for a few years serving as one of our school district Down Syn-
drome Specialists. When our Pathways program launched and we were recrui ng a Director of Behav-
ioral Services, we knew we wanted Megan to join our team!
Megan has a Masters of Special Educa on with an emphasis in Au sm Spectrum Disorders from the
University of Kansas. Megan has prac ced as a BCBA in the pediatric popula on, in school and home-
based prac ce, with a concentra on in reducing maladap ve behavior. She has exper se in crea ng
func on-based posi ve behavior support plans, crea ng visual supports, teaching func onal communi-
ca on skills, and training caregivers.
Besides working on our Pathways team, Megan will also be presen ng seminars on behavior, coordina ng our monthly therapy
team FB live conversa ons, collabora ng with schools to perform behavior observa ons and wri ng helpful ar cles for our Connec-
ons readers. We are SO EXCITED to have you join our team Megan!
You can email ques ons or suggest topics to be covered on our upcoming 3:21 Live shows by emailing [email protected]
Inspire Device Helps People With Down Syndrome and Sleep Apnea
Sleeping hasn't always been easy for 17-year-old Will Downs. Like the majority of people
with Down syndrome , he experiences obstruc ve sleep apnea, a respiratory condi on
that robbed him of res ul nights for years. When Downs tried to sleep, his tongue would
fall back in his mouth and restrict his breathing. This could some mes happen up to 80
mes an hour, according to his mother, Dawn Downs. Using a ven lator didn't help.
“It was a ba le and horrible," she said Thursday. "It's been a long journey." Fortunately
for the Downs family, it's been a journey toward solu ons. Cincinna Children's Hospital
iden ﬁed Will Downs as an ideal candidate to test a device called the Inspire system : A
small, pacemaker-like implant that s mulates the pa ent's airways during sleep.
Inspire had already been approved for adults over 22, but Downs was among the ﬁrst children to try it. He uses a remote to turn it
on every night before bed, and the s mulator prevents his tongue from blocking his airway while he sleeps. He hasn't snored since
he began to use it, he said. According to his mother, he's also become more energe c and improved his running me in the Special
Dr. Sally Sho , who works with the family at Children's, said the success of Downs' experiment could have implica ons for many
other children. "I've been in prac ce 32 years, and sleep apnea is diﬃcult to treat," she said. "This has got me very excited." Inspire
is a breakthrough sleep apnea treatment that works inside your body with your natural breathing process. No mask, no hose, no
Anyone interested in learning more about Inspire and poten ally par cipa ng in a study of its eﬀec veness in children can learn
more by calling the Children's Upper Airway Center at 513-636-3702.
Kristyn Hartman Reprinted by permission from WCPO/Cincinna Learn more about Inspire by visi ng inspiresleep.com
KFC Coupon Book Sales Beneﬁt DSG
DSG is thrilled to be partnering again with KBP Foods and area KFC restaurants on their
amazing coupon book drive. Proceeds from sales of the coupon books will be donated to
the DSG to support our vital programs and services. Please be sure to make a dona on
and grab a coupon book when you are in any KFC between February 25-March 31. Be
sure to thank the store employees when you are in for promo ng coupon book sales and
raising funds for DSG!
Date: Wednesday, March 20, 2019 at 6:30pm
Event: March Madness!! Join us in a private room at Minsky’s
pizza downtown for pizza, March madness basketball, friends
and fellowship. The DSG will pay for pizza. Loca on: Minsky’s
Pizza 427 Main Street, KC, MO RSVP to [email protected]
April mee ng not decided at me of publica on prin ng.
Check dadskc.org for more informa on.
CONNECTANDO DSG whole family Pizza Party. Join us Saturday, March 9th at
AMIGOS LATINOS 6pm at Waldo Pizza in Lee's Summit for our annual pizza par-
ty! Please RSVP to [email protected] by March 1st. Gluten
free pizza included. The DSG will provide pizza and fountain
drinks. And hope to see you at CoCo Keys WDSD Splash celebra-
on on March 21st! (invite on back of this newsle er)
Tema sera sobre la caminata, se acerca la fecha y hay que April mom's night at 7pm on Thursday, April 11th at Ched-
prepararnos. Porfavor de conﬁrmar a Yadira Murguia 913-563 dars. DSG will pay a por on of each mom's dinner. Please RSVP
-8951 o a Brenda Quintana 816-278-0219 to [email protected]
ST. JOSEPH FRIENDS
NO events provided at me of publica on. For more infor-
ma on on St. Joseph friends please contact Stephanie
Meﬀord, (816) 262-2827 or email [email protected] You
can also follow the St. Joe facebook group by searching St.
Joseph Down Syndrome Group.
LAWRENCE/ TOPEKA FLINT HILLS
We will be going to the Milford Nature Center on Saturday
April 13 from 1-3pm. We will tour the Ac ve Hatcher, see a
Coy feeding, and enjoy me at the Nature Center.
Birth – three playgroup for babies with DS on the ﬁrst Tues. of DOTTE FRIENDS
each month from 9:30-10:30am at TARC in our Children’s Play-
room. Families can come in through the main doors or through Hope to see everyone at DSG’s WDSD Celebra on at CoCo Keys
the playground doors. For informa on about LTF Friends on March 21st. Invita on on back page of Connec ons. Mom’s
please contact Wendy at 785-506-8616 or at toplaw- night out at El Toro Loco restaurant in the Legends 6:00-8:00.
[email protected] DSG will pay $10 towards dinner. Rsvp to Amy at Do e-
[email protected] RSVP to Do [email protected]
If you have a teenager with DS be sure to check in with ju-
[email protected] as DSG is now hos ng teen events once a month
in Topeka or Lawrence and we’d love to have your teen join us!
Down Syndrome Milestones Study is Promising
Individuals with Down syndrome con nue to learn new skills dependently. The study found that the majority of those with
well into adulthood, according to a study that’s oﬀering a me- Down syndrome can work independently by age 20. Mean-
table of what to expect from those with the chromosomal dis- while, roughly half can read and write reasonably well by age
order. Most people with Down syndrome are able to walk by 25 31. And, about a third live independently by that point.
months of age, speak reasonably well by the me they’re 12 “Contrary to some public beliefs, people with Down syndrome
years old and manage their own hygiene by age 13, according never stop learning, and func onal skills can s ll be a ained
to ﬁndings published online recently in the American Journal of and improved well into adulthood,” according to Brian Skotko,
Medical Gene cs Part A. director of the Massachuse s General Hospital Down Syn-
drome Program and a senior author of the study.
The research is based on a survey of more than 2,600 parents “Now we have guideposts — based on the responses of thou-
of those with Down syndrome — including young children all sands of parents — that can help clinicians know when children
the way up to adults in their 40s — in the United States and the may be falling behind their peers with Down syndrome and,
Netherlands. Moms and dad who par cipated were asked when necessary, refer parents to addi onal supports, resources
about their children’s skills in 11 areas: walking, ea ng, speak- and therapies,” Skotko said.
ing, grooming/personal hygiene, reading, wri ng, preparing
meals, working at a job, going on dates, traveling and living in-
Kendra Sco Town Center Crossing
4533 W 119th Street Leawood, KS
Kendra Sco Country Club Plaza
412 Nichols Road, Kansas City, MO
March 7th 5:30 PM‐7:30 PM
Enjoy sips, sweets and jewels! 20% of proceeds
of sales will beneﬁt the Down Syndrome Guild.
Unable to a end? Call the store the day of
the event and men on DSG and we will ship
your order to you at no addi onal cost.
Na onal Parks Access Pass for People with Disabili es
What is the Na onal Parks Access Pass? A free, life me pass -
available to U.S. ci zens or permanent residents of the United
States that have been medically determined to have
a permanent disability that provides access to more than 2,000
recrea on sites managed by ﬁve Federal agencies.
The Access Pass may provide a 50 percent discount on some How do I prove disability? Bring a le er from a doctor con-
amenity fees charged for facili es and services such as camping, ﬁrming diagnosis of Down syndrome or other disability.
swimming, boat launching, and specialized interpre ve services.
The Access Pass generally does NOT cover or reduce special Learn more: nps.gov/planyourvisit/passes.htm
recrea on permit fees or fees charged by concessioners.
Where can I get a pass? Pick up your pass at the Truman Muse-
um 223 North Main St. Independence, MO 64050 (816) 254-
2720. Call ahead to check hours and paperwork needed.
iCan Shine Bike Camps in Topeka and Overland Park This June
Blue Valley Rec and Easteseals are collabora ng with iCan Shine, a non-proﬁt organiza on that teaches individuals with disabili es to
ride a conven onal two-wheel bicycle using adapted bike equipment through its iCan Bike Program. This ﬁve-day program is taking
place June 3rd– June 7th at Blue Valley Recrea on 7720 W 143rd St. Overland Park, KS 66223 and Central Park Community Center
1534 SW Clay St. Topeka, KS 66604 .
Topeka camp ques ons? Overland Park Camp ques ons?
Contact Mary Contact Melissa Gilkison
[email protected] s.com 785-272-4060 [email protected] 913-909-6661
iCan Shine uses customized adapted equipment, trained professionals and volunteers. Approximately 80% of riders learn to ride a con-
ven onal bicycle independently by the end of the week. The remaining 20% of riders o en make great progress towards that goal. To be
eligible to enroll, riders must: be at least eight years old; have a disability; be able to walk without an assis ve device such as a walker or
cane; be able to side-step quickly to both sides; have a minimum inseam measurement of 20 inches from the ﬂoor; and weigh no more
than 220 pounds. This program requires riders to a end one 75-minute session per day.
The Importance of Par cipa ng in Research Studies
20 pounds. Our journey with misdiagnosed heart issues began scheduled and 4 days a er that I
with 20 pounds. Our daughter, Ellie, was 17 at the me and had received a phone call relaying that
recently gained 20 pounds. She is only 4’ 8” tall, so this weight the surgical team had met and it
gain was not healthy. We knew the weight needed to come oﬀ by was unanimous for open heart sur-
making healthier food choices and by using por on control. gery. A er hanging up, I wept for
what my daughter was going to
In August, an email was sent from the Down Syndrome Guild have to endure. I was scared for
about a no cost weight management study for individuals with this surgery and sad because she
Down syndrome and other intellectual disabili es at the Center wouldn’t understand most of it.
for Physical Ac vity & Weight Management at the University of
Kansas Medical Center. This is what we needed. I went online and However, I was also grateful. If it had not been for the weight
ﬁlled out the necessary paperwork to see if Ellie qualiﬁed. She management study and the op onal echo oﬀered who knows
met all their criteria and was enrolled in the study. As part of the when this defect would have been discovered. This program pre-
study Ellie was provided with a Withings scale to send her weight vented a more complex scenario, because had the defect not
to her health educator, a Fitbit to monitor her physical ac vity, been caught then worsening symptoms would have led to more
and the use of an iPad to log her food. The study oﬀered free serious issues and possible complica ons.
op onal echocardiograms and I thought, “why not?” I scheduled
an appointment for early October at Children’s Mercy. The surgery requires a 7 day stay in the hospital and a 2-4 week
recovery at home. Ellie is in her senior year and for that reason
The echocardiogram started normally and a er all the images the surgery will be scheduled a er her gradua on in May. The
had been taken the technician le the room. Upon returning to weight management research study, and ul mately the echo, led
the room, the technician was accompanied by the head nurse to the discovery of Ellie’s heart defect.
and the cardio rehab nurse, all whom had concerning looks. The
tech reported that the cardiologist wanted to speak to me over Ellie is a bright spot in our family and we feel so lucky to have her.
the phone about the results. My family and I will be forever grateful to KUMC for oﬀering this
The cardiologist, Dr. Forsha, calmly explained to me that Ellie has
a hole in her heart AND her mitral valve is leaking. I felt like I was Submi ed by Amy Lipnicky, Proud mom to Ellie
punched in the gut. I had absolutely no clue that Ellie had an un-
healthy heart, typically these defects are discovered at birth but For more informa on on the KUMC Weight Management Study
somehow hers was not. Dr. Forsha went on to tell me that Ellie go to h p://ebl.ku.edu/adolescent-idd
would possibly need surgery. Two weeks later a 3D echo was
Supported Decision Making: An Alterna ve to Guardianship
Supported decision-making (SDM) allows individuals with disabil- important ma ers. Their guardian makes choices for them about
i es to create a support network of people who support them in major life issues including their personal health care, their ﬁ-
making decisions about their own lives. SDM is an alterna ve to nances, whether to marry and raise a family, with whom to asso-
guardianship. Guardians make decisions for the person with a ciate, and other day-to-day decisions. At least 1.5 million adults
disability. However, supported decision-making allows the per- in the United States are under guardianship, but the number
son with the disability to make his or her own decisions instead could be as high as 3 million, given the remarkable dearth of
of having someone else make them for him or her. Supported data.
decision-making promotes self-determina on, control, and au-
tonomy. It fosters independence. The number of individuals with intellectual or developmental
disabili es (I/DD) under guardianship is expected to increase
We all engage in supported decision-making. We consult with over the next few decades. Due to enhanced medical care, many
family, friends, colleagues or mentors before we make deci- people with I/DD will outlive their parents and family caregivers.
sions. We may seek support to decide where to live, go to col- Data suggest that by the year 2030, there will be several million
lege and whether to take a job. We confer with others, and then individuals over 60 years old with intellectual disabili es in the
we decide on our own. People with disabili es may need assis- U.S. who will be at risk of guardianship.
tance making decisions about living arrangements, health care,
rela onships, and ﬁnancial ma ers. But they do not necessarily At the same me that guardianship numbers are increasing,
need a guardian to make those decisions for them. there has been what disability experts call a “paradigm shi ”
away from the overly protec ve construct of guardianship to-
A trusted network of supporters selected by the person with the ward the more rights-focused construct of supported decision-
disability can ﬁeld ques ons and review op ons to help the per- making. Though supported decision-making is just gaining a
son with a disability make decisions. The individual should select foothold in the United States, this concept has been evolving in
supporters who know and respect his/her will and preferences, other countries for more than a decade.
and will honor their choices and decisions. The supporters can
be family members, co-workers, friends or care providers. This shi of thinking away from plenary guardianship and sub-
s tuted decision-making toward supported decision-making is
Why is Supported Decision‐Making Important? the founda on of the Center for Public Representa on’s work
People under guardianship experience a kind of “civil death” on supported decision-making. Learn more at supporteddeci-
because they lose the right to make their own decisions about sions.org
The 16th Annual Private Cellar and Wine Tasting and Auction will be hosted at
the Gallery event space in the heart of the Power and Light District. Join us
as we bid on unique wines from Kansas City’s foremost private collectors
through silent and live auctions. Enjoy wines from around the world while
taking in the remarkable view of downtown KC!
Tickets are $100 per person. Reserve online: my.kcdsg.org/wine
Thank you to the cast members of Born This Way
for coming to Kansas City to inspire our conference
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
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bywhaoys tnog baeDrceosms fDoorwtanblDeaya!llCadlal ythAeNDDSGto
ata9l1so3-3h8e4l-p48t4h8ofsoer mwoirtehinDfoorwmna soynn.drome.
Help spread awareness and display the
many gi s and talents of individuals with
17th Annual Tee Up for Down Syndrome Golf Tournament
DSG’s 17th annual golf tournament will be held at Shadow Glen on Monday, September 9, 2019. The tournament will feature
breakfast, shopping in the concept store, lunch on the course, specialty drink holes, hole contests with premium prizes, mee ng
and playing against some of our amazing self advocates with Down syndrome and an a ernoon cocktail recep on as we recognize
the top scoring team. We are currently looking for hole sponsors, bag sponsors, teams and raﬄe items. Contact ﬀ[email protected]
if you would like more informa on on how to get involved and support this great event.
5960 Dearborn Street Non-Proﬁt Org
Suite 100 U.S. Postage Paid
Mission, Kansas 66202
913-384-4848 Olathe, KS
[email protected] Permit No. 932