jan feb 2019 connections

Volume 24 Issue 99 January/February 2019

CONNECTIONS

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

DSG CELEBRATES 35 Keys to Success Conference

YEARS OF SERVING Be sure and get registered for our Keys to Success Conference so you can ac-
cess na onal and local experts who are covering important topics such as be-
FAMILIES havior, po y training, transi on planning, local and na onal research updates,
medical advancements, fostering independence, IEP 101 and more!
DSG is celebra ng 35 years of serving our com-
munity this year. DSG was started by parents We are thrilled to have two cast members from A&E’s Born This Way provide
in 1984 who wanted to connect with others keynotes along with their mothers! Rachel Osterbach and Megan Bomgaars
walking out the same journey. They knew will share their hopes and dreams and their mothers will talk about the jour-
there was power in numbers and that change ney of paren ng a child with excep onal needs.
could happen for their children if they banded
together to educate the community on their
children’s condi on.

Help DSG celebrate 35 years by making a $35 Parents, extended family members, educators, therapists, paras, administra-
dona on in honor of your loved one with Down tors and service providers are all encouraged to join us for a great day. Regis-
syndrome! Visit kcdsg.org and click the donate tra on is $65 for one a endee and $100 for a shared registra on. We an ci-
bu on in the top le corner for our home page pate a sell out crowd and hope to see you there.
to make your dona on.
REGISTER ONLINE BEFORE JANUARY 18

CONFERENCE.KCDSG.ORG

Before she was married and living on her own, Jillian
Daugherty Mavriplis and I spent our early mornings
together. When she was a li le kid, I made her break-
fast, packed her lunch (healthy) and escorted her to
the bus stop. When she was a big kid, she made her
breakfast, packed her lunch (junk) and informed me
that my bus-stop presence wasn’t cool.

During her first three years of college, before she moved out, I drove her to the Metro bus
stop, where she’d catch the 3X downtown and transfer to the TANK bus to NKU. We talked
every morning for something like 14 years.

Jo Ann Butaud I miss that. So now, when I get the chance to chat with my 26-year-old married-for-a-year
Shawnee, KS child who happens to have been born with Down syndrome, I’m a river of ques ons. Jillian
humors me. “We should talk,’’ I say hopefully. “Yes, dad,’’ she says, sounding like a verbal
Bob Fagan sigh.
Prairie Village, KS
She’s been married a year, to the es mable Ryan Mavriplis. I wanted to talk about that.
Mike Frazier Here’s the chat, unfiltered, conducted on a recent day in the car, on the way to Jillian’s
Overland Park, KS summer job as a teacher’s assistant at the Blue Ash YMCA: “What’s the best thing about
being married to Ryan?’’ “He’s a kind and honest person that I love for a long me.’’
John Melvin “Looking back now, what did you like about your wedding?’’ “The best thing was the whole
Overland Park, KS family went. Seeing your parents there and mom’s parents made it so special. We could not
get married without your parents there.‘’ “What do you love about Ryan?’’ “He’s fun and
Joe Roos he always makes me laugh every me. He always supports me in everything. He’s the right
Parkville, MO guy.’’

Chris Sorenson When he’s not at work or hanging out with his bride, Ryan manages the NKU baseball team,
Prairie Village, KS and as such is frequently on the road between February and May. “What’s it like when
Ryan’s out of town?” I wonder. “Sad, lonely,’’ Jillian says. “When he’s away for his baseball
Tom Wagstaff trips, it’s no fun without him. I call and text and Face me, to make sure he’s OK.’ “What’s
Mission Hills, KS hard about being married?’’ “To move out to our own townhouse. Paying our rent, ge ng
our food for the week.’’ “No, Jills. I mean what’s hard about married life?’’ “Nothing’s too
Connec ons is a bi-monthly publica on of hard about it. It’s easy, actually. Ryan and I also are parents now.’’ Yes. They recently
the Down Syndrome Guild of Greater Kan- adopted Gracie, a 1-year-old spaniel mu .
sas City. Please contact the office at (913)
384-4848 if you have any ques ons about Jillian has a good friend who has a boyfriend she has dated for a few years. I asked Jillian if
the contents of this newsle er or would she had any advice for her friend. “Wait for your moment, don’t be nervous,’’ Jillian says.
like to contribute an ar cle. “It’ll happen someday. I’ve done this before. He’s the one. When (he) takes (her) hand for
marriage, I might happy-cry.’’
Disclaimer: The informa on provided is done so
through a variety of sources including names pro- I wrote a memoir about Jillian. My editor at Harper Collins tled it "An Uncomplicated Life."
vided by members of DSG, networking, referrals by I didn’t care for the tle. It suggested Jillian was a simpleton. “She’s not uncomplicated,’’ I
professionals, other agencies, mail adver sements, protested. “She works full me, she lives independently. She’s ge ng married.’’ Henry the
etc. DSG cannot a est to the quality or qualifica- editor said he didn’t mean it that way. He knew Jillian’s life was as full as anyone’s. A er all,
he’d just edited the manuscript. Her priori es, he said. The tle mirrors her priori es. Hen-
ons of the individuals or organiza ons described. ry was right.
We encourage you to be a wise consumer and ask
ques ons in order to make your own independent Jillian and Ryan aren’t beholden to conven onal people-foibles. They own no jealousy, they
evalua on of u lizing the services described. We
share informa on about research projects but in lack all guile. They have no agendas. >>>Con nued next page>>>
doing so, it is not reflec ve of endorsement.

Clinical Trial Network Promotes DS Research

LuMind Resarch DS Founda on recently launched a na onwide clinical trial network sup-
por ng pa ents with DS. The goal for the Down Syndrome Clinical Trials Network (DS-
CTN) is to carry out clinical trials more rapidly with the readiness of clinical sites and the
availability of ready-to-enroll par cipants with Down syndrome. This is important, be-
cause several promising interven ons to improve health and independence for individu-
als with Down syndrome are ready to enter clinical trials in the next 5 years that will re-
quire hundreds of par cipants in each.
The DS-CTN is launching 11 sites ready and coordinated to conduct large-scale, mul -site trials in 9 states by 2020 with the supervision
of experienced clinicians who are experts at providing medical care for individuals with Down syndrome. Our first focus is suppor ng
observa onal studies and preparing for possible clinical trials aimed at preven ng Alzheimer’s onset in adults with Down syndrome –
because promising medicines are ready and 55% of them are at higher risk of symptoms by age 50. In the future, we plan to expand
and include readiness for trials involving speech challenges, sleep disturbances, significant behavioral and mental health issues, au-

sm, “DS Disintegra ve Disorder,” and auto-immune condi ons in pediatrics and adults. Several of the ini al DS-CTN clinical sites al-
ready see pediatric-aged pa ents. Visit lumindrds.org/ds-ctn/ to learn more.

Dads Corner Con nued

They can get angry, but they’re not mean. All that really ma ers to them is whom they
love and who loves them. They’re uncomplicated that way. They’re not special, at least no
more so than the rest of us. They’ve been en rely fortunate to have been seen and not
looked at. That fundamental difference is the key to everything. Seeing is ac ve and en-
gaged. It requires empathy. I see your point. Seeing isn’t just a good thing to do. It’s a
basic civil right.
Looking is passive and judgmental. It’s lazy. Think of the human poten al squandered
over the centuries, because we’ve looked at people rather than seen them. Those who
have chosen to see Jillian and Ryan over the years have been rewarded in loyal friendship
and lifelong perspec ve. They know what pure hearts look like.
Last June 27, Jillian and Ryan were married at the Cincinna Nature Center. One hundred and fi y people a ended the ceremony.
Every single one of them had a hand in ge ng the newlyweds to that moment. It takes a village. With a couple with a disability, it
takes a village of seers. Happy anniversary, you two. Thanks for reminding us what ma ers. Thanks for keeping it uncomplicated.
Submi ed by, Paul Daugherty, Proud dad (and father in law) to Jillian and Ryan

EASTLAND FRIENDS

We are planning a pain ng party for February but need a commit-
ment from at least 10 people to schedule the event. RSVP for
events to: [email protected] Our email list hasn't been
updated in a while. Please le me know of any families with new
babies or who have recently moved to the area. I want to make
sure we catch everyone and find each other to share the joys and
encourage each other through the challenging days.

CONNECTANDO

AMIGOS LATINOS ST. JOSEPH FRIENDS

Familias, tendremos junta el dia 21 de Sep embre de 6:00‐ NO events provided at me of publica on. For more infor-
8:00 pm en las oficinas del DSG. Tema sera sobre la caminata, ma on on St. Joseph friends please contact Stephanie
se acerca la fecha y hay que prepararnos. Porfavor de confir- Mefford, (816) 262-2827 or email [email protected] You
mar a Yadira Murguia 913-563-8951 o a Brenda Quintana 816- can also follow the St. Joe facebook group by searching St.
278-0219 Joseph Down Syndrome Group.

LAWRENCE/ TOPEKA
FRIENDS

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 Join us for our annual bowling event at Park Lanes, January
the playground doors 19th at 10:00. DSG will cover 2 games, shoes and
snacks. RSVP to Do [email protected].
Our LTF group is going to have our annual family “Fun with
Kyler” day on Saturday, 2-09-19, 11-00 - 12:30, at TARC in the On February 23rd we will be going to Chuck E. Cheese's on
Geers Bldg. We’ll have pizza and veggies a er lots of fun, sing- 9196 N. Skyview Ave, KCMO at 10:00 a.m. for games and pizza,
ing, dancing and reading stories with Kyler. Please RSVP to provided by DSG. RSVP to Do [email protected].
Wendy at 785/506-8616 or at [email protected].

D.A.D.S

Date: Wed, January 16, 2019 at 6:30pm
Extreme Grand Prix Go Kart Racing with pizza and crowing
of the winner a erwards in the VIP room. DSG will pay for
one race and pizza a erwards. Loca on: Extreme Grand Prix
at 6731 Blue Ridge Blvd, Raytown, MO 64133
Thurs, February 21, 2019 at 6:30pm
Arcade night at Tapcade in the Crossroads District. Come
out and play vintage arcade games such as Pac Man, Donkey
Kong, and Space Invaders in an arcade format, but with cra
beer and pub food to accompany us. The DSG will pay for
meals and arcade games for the night. Loca on: Tapcade at
1701 McGee St #200, KC, MO 64108 RSVP for events to
[email protected]

FLINT HILLS

The Flints Hills Group will be having an event at the Flint Hills
Discovery Center in Manha an, on Saturday January 19th
from 6-9pm. Dinner and childcare will be provided and there
will be a brief program for parents. More informa on can be
found on our FB page called Flint Hills

Thank you Braxton’s Ba alion for raising $2,000 for DSG through the Do More Charity Challenge!

Par cipate in a Research Study on Oral Health and DS

Take part in a research study to learn more about the oral health and general health status of
children aged birth to 21 with Down syndrome as well as your experiences with dental services
for those children. This study will be conducted by Dr. Mar na Majstorovic, Department of Pe-
diatric Den stry, New York University College of Den stry.

The survey should take 5-10 minutes to complete and will ask ques ons about your child age Par cipate in the study here:
birth to 21 with Down syndrome regarding his/her general health, oral health and experiences nyurl.com/dsoralhealth
with the den st. Personal iden fiers will not be collected and par cipa on is voluntary. We
appreciate your me and contribu on to this study.

Nominate a Community Champion for World DS Day

DSG is excited to announce our Annual World Down Syndrome Day Community Champion
nomina ons are open! Know someone who exemplifies what it means to be an advocate of
individuals with Down syndrome? Show that person in your community how much you appre-
ciate their hard work, care, and support.
Visit kcdsg.org/wdsd1.php and click on the nomina on form to download. Nomina ons must
be sent to [email protected] by January 10, 2019. Winners will be announced in early Febru-
ary. Help us celebrate the great work being done to help our members!

Complete questionnaire here: tinyurl.com/lendsurvey
Questions? Contact Stephanie Coleman at: [email protected]

iCan Communicate Classes

We have had great response to our past iCan Communicate classes so we are excited to an-
nounce a whole new series of classes taught by our Director of Speech and Language Services,
Betsy Sylvester. Review descrip ons below and apply for one or more classes by visi ng:
kcdsg.org/ican-communicate
iCan Communicate in Social Se ngs (Teens): This class will teach teens how to interact with peers in social se ngs in appropriate
ways. It will have 1:1 peer facilitators (volunteers) while a Speech-Language Pathologist will teach the weekly lesson. Classes will be
Mondays from 6:00-7:30: January 7, 14, 21, and 28 February 4 Registra on deadline is January 1st.
iCan Communicate at Work and in My Community (Older Teens and Adults): This class will teach young adults and adults how to
communicate in social and professional situa ons. Classes will be Mondays from 6:00-7:30pm: March 25th April 1, 8, 15, and 22 Reg-
istra on deadline is February 28th
iCan Communicate by Building my Vocabulary (Young Children and Caregivers): This class will teach children with DS and caregiv-
ers how to build their vocabulary and u erances u lizing sign language. Conceptually Accurate Signed English (CASE) will be used.
Classes will be Mondays from 6:00-7:30 pm: June 3, 10, and 17 July 1 and 8. Registra on deadline is May 6th.
iCan Communicate to Express My Feelings (Adolescents): This class will teach adolescents how to use words to express feelings to
decrease nega ve behaviors. Classes will be offered on the following Mondays from 6:00-7:30pm: September 16, 23, and 30 October
7 and 21 Registra on deadline is July 30th

Top Ten List of Behavior Tips and Tricks

10.Mean what you say and say what you mean. Clear instruc- ly ill advised. The amount of a en on that is required to teach is
ons with consistent follow through are key to teaching your not something that we usually want to give when these behaviors
are occurring and quite honestly an upset child is a terrible learn-
child to listen. If you not ready to stand up and take ac on then er. Teach proac vely and you will get MUCH further faster.
don’t even give the instruc on. It’s ok to wait…in fact it is be er
to wait! 3. Always focus on teaching if your goal is to reduce problem
behaviors. Inappropriate behaviors are a result of weak reper-
9. Provide choices. We all want to have choices throughout the toires. Look closely at what your child is doing and what they
day and children are no different. Forced choice (do you want should be doing instead. Stumped? Think about what another
___ or ____?) or free choice can really help give children a sense child may do in that situa on for a clue. Once you have figured
of control. Increased choice can also help reduce the frequency of that out then it is me to start teaching. Remember to use lots of
problem behaviors. Just choose your choices wisely! reinforcement and prompt when necessary to set your child up
for success!
8. Find your child’s “currency”. No one works for free and we all
work for different reasons at different mes. You can waste a lot 2. A end to the behaviors you want to see repeated. You are
of me figh ng this or assess and use mo va on properly to help your child’s most valuable reinforcer and the a en on that you
your child learn and behave be er. Remember, reinforcers can give will literally shape their behavior. Be selec ve about what
be faded and many will change even without your help! you a end to and don’t be afraid to coach others to do the same.

7. Choose your ba les wisely and perhaps one at a me. It is 1. Have fun every day with your child. Paren ng isn’t easy and
perfectly appropriate to focus on one behavioral goal at a me at some mes children are NOT easy, but we are all more willing to
home. It is be er for your child to do one goal well then many do things for our best friend than a friendly acquaintance. Don’t
goals inconsistently. just be in your child’s circle, BE the circle (and no that doesn’t
mean not le ng anyone else in and not disciplining when neces-
6. Use visuals. Most children these days are visual learners. You sary…please see #s 2-9 above!).
can help improve behavior and learning by providing visual sup-
ports like rule reminders, schedules, and social narra ves. Visual Stacy Taylor, has experience as an early
mo va onal systems like token boards and s cker charts are also interven onist and behavior analyst serv‐
very helpful for some children. ing people with disabili es. She served as
director for 3 behavior clinics and cur‐
5. First – then is your friend’. Con ngency statements like “first rently owns and operates Advance Be‐
__, then ___” help provide sequence and predictability. Use them havior & Learning, and a fully inclusive
o en and make sure to honor and stay true to them to maximize private elementary school, Advance
their effect. Learning Academy in Central Florida.
Stacy will present three breakouts at our
4. No teaching during tantrums. While it is temp ng to want to Keys to Success Conference in January!
give a lesson in “gentle hands” a er your child has hit you, teach-
ing during or immediately following a problem behavior is typical-

Sing Your Way to Success!

Over the years of working with children with Down syndrome, I have learned how powerful simple song cues can be in helping chil-
dren follow steps in a sequence, learn new skills, and recall informa on from their memory. Research tells us, and I have seen in my
clinical experience, that working memory can be challenging for our kids with DS. Music can be a powerful tool to suppor ng a

child’s working memory. Think about how you can recall commercial jingles from years ago word for word. That is a demonstra on

of the power that music has on working memory. Music listening, even a sing-song voice of a parent or a teacher, s mulates many
parts of the brain, including cogni ve, sensorimotor, memory, and emo onal processes. Music engages “mirror neuron system” ac-

vity that en ces the brain to imitate what it is hearing, which is awesome for learning. It is easy to incorporate sing-song cues and
here are some examples:

-Say the le ers of your child’s name in a predictable sequence of sounds as she
writes the le ers

-Help your child memorize his or her primary phone number by singing the sequence
of numbers as he enters it in the phone

-When you pull into the driveway, sing a made-up song, “We are home and we live
at (sing the address)”

-Play a highly mo va ng song when brushing teeth or hair and let your child know
when the song ends they are done with the tasks.

Musical cues help with working memory, and singing is easy to incorporate into your daily rou ne. It can be fun to make up songs
individualized to your child’s needs, especially if you involve the siblings. Memorizing personal facts, such as first and last name,
parent’s names, and address, is important, especially for recalling during situa ons where safety is at stake.

During mes of stress or anxiety, it is difficult for any of us to retrieve informa on in our memory, but if the informa on was put in
our brains ed to music, there is a greater likelihood of recall. Your family is important to us and your child’s learning is especially
on our minds. Stay tuned for more ps from your DSG therapy team in future issues of Connec ons and through our social media
channels. If you have ques ons you would like our therapy team to address through ar cles please email them to [email protected]

Submi ed by, Sarah, Mai Director of Family Services, Occupa onal Therapist

New Books from Woodbine House Help Families Prepare

If you’re the parent, teacher, or therapist of a young child with Down syndrome, you should know that
Applied Behavior Analysis (ABA), the evidence-based, gold-standard method for teaching children with
au sm, is an equally effec ve strategy for teaching children with Down syndrome! In Off to a Good Start:
A Behaviorally Based Model for Teaching Children with Down Syndrome, a two-book set, the authors
share the compelling research about the benefits of using ABA methods with children with Down syn-
drome, describe ABA principles and procedures, and provide the ABA-based curriculum they’ve used for
nearly 20 years to successfully teach infants through kindergarteners with Down syndrome. With these
books, readers will learn ABA prac ces for teaching children the all-important founda onal skills in mo-
tor, social communica on, cogni ve, and self-care development.

Finding the right residen al situa on for an adult child with an intellectual disability doesn’t have to be
overwhelming. The authors of Moving Out share decades of experience counseling families on housing
op ons to help parents prepare themselves and their children for a new living arrangement. Use this au-
thorita ve guide, full of checklists and forms, to make educated decisions and secure the housing that’s
best for your child and family. Discover the universal considera ons most families should face before
pu ng plans in place:

 Planning early  Hiring staff Visit woodbinehouse.com
 Residen al models  Group living to order books today!
 DIY or hire an agency?  Legal ownership
 Costs & funding

Thank you for Stepping Up Kansas City!

Wow! What a great day to be inspired! Food, games, and family fun all at
Arrowhead Stadium. Thank you to each and everyone of you for crea ng a
walk team, raising money and for suppor ng the Down Syndrome Guild.

$562,000 Raised A Special Congratula ons to these Award Winning Teams!
Most Money Raised
Record Breaking
Year!!!! Kaden’s Quest

Most Registered Walkers

Ainsley’s Army of Angels

Save The Date
Private Cellar
Wine Tas ng

& Auc on

Our first Step Up for Down Syndrome walk in Central Mis- Join us for an evening of fun and great wine as we celebrate those
souri exceeded all of our expecta ons! We hoped to raise with Down syndrome at “The Gallery” on Thursday, April 25th
$50,000 and hire a part me program coordinator to work from 6pm-9apm
in the area. Families, corpora ons and volunteers blew us
out of the water by raising $95,000. This will allow DSG to Taste wines from around the world and have an opportunity to
hire a full me program coordinator in 2019. bid on unique wines from Kansas City’s foremost private
collectors.
We will bring much needed child, teen and adult program-
ming and educa onal seminars and conferences to Central For further details or to donate wine, please call 913-348-4848
Missouri. Thank you to everyone who made this walk a
great success. 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
thDosoe ywouithanDdowyonursycnod-rwoomrek.erHse/flpriesnpdrsealdike
awwaereanriensgs jaenadnsditsoplawyotrhke? mHeanrey igsi asnaenadsy
tawlenatys toof ibnedivciodumaflos rwtaitbhleDoawll ndasyyndArNomD eto
byahlsoos hneglpa DthreossseDowwitnh DDayo!wCnallsythnedrDoSmGe.
atH9e1l3p-3s8p4r-4e8a4d8afowramreonreesinsfoarnmda doisnp.lay 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.

DSG Recognizes Volunteers of the Year for Their Contribu ons

Sassafras Marke ng received DSG’s Cor- Govanni Garcia received DSG’s individual vol-
porate Volunteer of the year award for unteer of the year award for his reless efforts
their strong support in helping DSG im- at countless DSG events. He is always en-
prove our brand, website, social media gaged, happy and helpful and we are blessed
presence and print communica ons. to have him support DSG’s mission and work.

Sassafras has been involved with the DS Govanni was delighted to win this award and
community for nearly a decade and said that his first volunteer event was a holi-
their contribu ons have helped DSG day party three years ago. When he saw the
immensely. We appreciate their com- volunteer of the year get her award, Govanni
mitment to helping us grow our brand thought, “I want to get that award some day!”
and presence within the greater KC Talk about a full circle moment? We are so
community. grateful for all you do to support DSG events
Govanni!

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