Embed Size (px)
Citation preview
Early Matters E-Newsletter June 2017
Happy summer time, Early Matters families!
I had something else planned to talk about this month in the newsletter, but I
received this very important update from the Thomas Center (specifically from Dr.
Wiley) and thought that you would want to have this information as soon as
possible. This newsletter is kind of long, but there are so many amazing
opportunities this summer and we wanted to make sure you knew about all of
them! I am constantly thinking about you and praying for your littles. I ALWAYS
love to hear updates!
Jena Wells, Early Matters Coordinator
Thomas Center Updates from the Director of
the Thomas Center • June 2017
The Thomas Center has been working to ensure innovative care for children, adolescents, and young adults with Down syndrome to ensure optimal health, developmental status, and social-emotional functioning. We wanted to take the opportunity to let people know about what we have been doing. We have some new and returning people you may meet when you come to the Thomas Center.
Our medical team welcomes Cassie Wolf, RN. She is the care coordinator for the Thomas Center and a great person to connect with if you are having questions about where to turn, how to get providers on the same page, particularly with the medical needs of your child. Stephanie Shelander is a medical assistant who is also
supporting clinical care within the Thomas Center.
Pam Williams-Arya, MD has been a long-standing part of the Thomas Center. She has been seeing children within the Thomas Center since 2004.
Jena Wells
Early Matters Coordinator
513.761.5400
Transition Services
Katie Thoman-Godschalk, APN and Jason Woodward, MD have been involved in the Thomas Center for quite a while, providing medical visits for children and adolescents with Down syndrome. They also provide transition care services. When adolescents and young adults are seen for transition services, a broad-based approach is used to consider all aspects of transition (vocational, independent living, healthcare, financial considerations, guardianship).
Dr. Woodward also works within the Division of Adolescent and Transition Medicine. If you are looking for general guidance on transition needs, seeing providers within DDBP is a good place to start.
In Nutrition
Mindy Wendland is a registered dietician who works within the Thomas Center. She also works in a variety of other settings within Cincinnati Children’s, including working with Dr. Kaul in Gastroenterology when he sees patients within the Division of Developmental and Behavioral Pediatrics.
In the last 2 years, we have been working more closely with the Fetal Care Center for prenatal visits. In this setting, we provide information about Down Syndrome, Family Support networks and the Thomas Center to parents and families before their child is born.
We continue to strive for high quality and supportive therapy services, with the recognition that there are a number of excellent providers across the broader institution. Our team can provide visits to guide treatment planning and identify next opportunities for growth. The team can also provide direct therapy.
In Physical Therapy
Sarah Fox is back as a brunette! Sarah was a member of the Thomas Center in the past and has returned to see children for evaluations and treatment. Chantelle Cunningham will be joining us in the fall to provide treatment. She will focus on early motor development.
In Occupational Therapy
Kristyn Turner brings expertise in feeding and early childhood development. She is a member of the young childhood team, infant team and is a member of the interdisciplinary feeding team within CCHMC. Beth Johnson and Kristen Brevoort bring their expertise in evaluations and therapy for older children with Down syndrome for evaluations.
We continue to ensure children have access to Speech-Language Pathology services
through the Thomas Center.
Jenn Bekins has been a long-standing member of the Thomas Team. Jenn sees children as part of the evaluation teams and for treatment including those with feeding needs. Many DDBP Speech providers have stepped in over the last year to help assess and treat our growing numbers. This has been particularly helpful for children using AAC devices or dually diagnosed with autism spectrum disorder. You may also know Rosie Sheldon who has been leading toddler talk parent education series. We appreciate her support of families and children with Down syndrome.
For behavioral supports and psychological evaluations…
Anna Esbensen, PhD is a psychologist with expertise in children, adolescents and young adults with Down syndrome. She is also active in research projects, particularly involving sleep in children and adolescents with Down syndrome. She is the Director of Research for the Thomas Center.
Gretchen Carroll continues to provide educational consultation services for children and adolescents with Down syndrome. She has been a long-standing
member of the Thomas Center and her educational expertise is extremely valuable in supporting children with Down syndrome in Educational Settings.
Gretchen is able to support families who have been seen within the Thomas Center during the past 3 years. Her consultative services do not require families to pay a fee. However, there is a fee for educational testing which is currently not covered by insurance. She is often open to communication by phone or e mail as a first step to determine educational needs and desired services.
We have been working on optimizing our team models. We have a visit for infants (0-5 months) that includes a physician, speech-language pathologist, and occupational therapist. This visit is an hour in length and provides supports and strategies for medical needs, feeding, and development. We have visits for children 6 months to 3 years, 11 months which includes a medical visit (separate appointment) and a team visit with a speech-language pathologist, occupational therapist, physical therapist, and nutritionist. Our care coordinator is also a part of these visits. We are expanding our young team visits with an additional day per month of visits due to a high demand for these services.
Golf Major Raffle
Pinehurst Golf Getaway Raffle
Raffle TICKETS: 1 for $20 | 3 for $50 | 7 for $100
Private Air transportation on King Air from Lebanon Warren County Airport.
4 Nights in a private 4 bedroom home in Pinehurst, NC.
3 rounds of golf for four! You will play a combination of Pinehurst golf courses including Pine
Needles (Donald Ross), Dormie Club (Coore/ Crenshaw), and Mid Pines (Donald Ross). There’s
even a possibility of playing Course #3! Both Pine Needles & Mid Pines are ranked in the
‘Top 25 of Golfweek Magazine’s Top 100 Resort Courses in the USA’. Mid Pines is ranked #18
and Pine Needles #22. For nearly a century, golfers have reveled in the serene ambiance of Pine
Needles and Mid Pines Golf Resorts.
Restrictions: Expires June 19th, 2018 VALID: 11/1 through 3/1 and 6/1 through 6/19 Subject to
availability, blackout dates may apply
Drawing will take place the evening of the tournament on Monday, June 19th. You do not have to be
present to win. For additional information about the event, please visit www.dsgolf.org.
We recognize that our older children (4 years and over) may need a longer time to complete evaluations and by putting them all in one day, it is hard to get a good picture of a child’s skills. We are looking at various models such as a treatment planning sessions with two disciplines together. This model would not include standardized testing, but instead determine priorities and next steps to guide interventions. We hope this approach will improve our care to target specific child and family needs. Standardized testing would still be available through discipline specific evaluations.
We appreciate our partnership with the Down Syndrome Association of Greater Cincinnati. We also appreciate the involvement and input of families in our programming models. We have
worked with a group of families to improve the content our website and hope to develop a formal family advisory committee for the Thomas Center in the future.
Respectfully,
Susan Wiley, MD,
Director of the Thomas Center for Down Syndrome
Empowerment Classes
Sign Language Level 2 (ages 0 - 5)
Thursdays | 6:30 - 7:30 PM July 6 - August 10
DSAGC Hatton Foundation Community Room
Do you feel like you are ready to learn how to make short sentences in sign language? Do you want more vocabulary to build upon what you learned in our Level 1 class? Have you learned basic sign language through other avenues and are looking for the next step? If so, this is the class for you! You will learn more adjectives, 3 - 4 word sentences and basic language. Practice makes perfect, so we will be practicing a lot in this class.
Our instructors from the Hearing Speech and Deaf Center of Cincinnati will support you through this class. If you have any questions, please contact Jena Wells at [email protected].
Dramakinetics (ages 3 - 5)
Mondays | 6:30 - 7:30 PM July 10 - August 14 DSAGC Hatton Foundation Community Room
*one sibling per participant
Performing arts for fun and function. Dramakinetics uses drama, music and movement to spark self-determined creativity in all people so they can reach their full potential. Our instructors will provide programming with embedded SEL (social-emotional learning) skills, therapeutic goals and academic content. If you have any questions, please contact Jena Wells at [email protected].
"Dramakinetics means self-expression through drama and the arts. It opens up opportunities for individuals to consider how they move through space, impact others, work collaboratively and understand different forms of expression". - DK parent
Register
21 Series
Puberty
June 21 | 6:30 - 8 PM DSAGC Hatton Foundation Community Room Presented by TJ Nestheide and Amanda Tipkemper
TJ Nestheide, who is on the Behavior Support Team for Hamilton County DDS and Amanda Tipkemper, who is the Autism Services Manager at the Children's Home of Cincinnati, will be speaking about puberty. The emotions, feelings and urges involved, how to explain puberty to your child with Down syndrome and how to work with the changes puberty brings. They will be available to answer specific questions too! If you have any questions, please contact Joanie Elfers at [email protected].
Parent Panel
July 21 | 6:30 - 8 PM DSAGC Hatton Foundation Community Room Do you ever wish you could hear stories from others in your shoes? Do you want to hear experiences from other parents that “get it”? We are going to talk about schooling experiences, sibling experiences, activities children are involved in, social aspects, etc. A lot of time will be open to discussion. There will be question and answer time too. Come and enjoy a cookie while we chat about our children (one of our favorite things to do!). If you have questions, please contact Jena Wells at [email protected].
Sibling Support
August 21 | 6:30 - 8 PM DSAGC Hatton Foundation Community Room Presented by Alisa Nelson, CCHMC "Sibshops" Brothers and sisters of a person with special needs can experience life-long and ever changing concerns. Cincinnati Children’s offers a program called “Sibshops”, which addresses the concerns of siblings. Alisa Nelson, Licensed Social Worker at Cincinnati Children’s Hospital, will discuss some of the issues that siblings experience throughout their lives. She will also inform you of the program “Sibshops” through Cincinnati Children's Hospital Medical Center. If you have any questions, please contact Joanie Elfers at [email protected].
Guardianship
September 21 | 6:30 - 8 PM DSAGC Hatton Foundation Community Room Presented by James A. Singler, Attorney at Law
Understanding guardianship and the other options that are available is important for a family, especially as a child prepares for adulthood. By attending this workshop, you will learn about guardianship and other ways to support your adult child (or soon-to-be adult) with financial, medical and legal decision-making. Pros and cons of the various options will be discussed and implications will be outlined. If you have questions, please contact Christy Gregg at [email protected].
Register
Ice Cream Social
Summer Picnic
Ages prenatal - 5
Sunday, July 9 | 3 - 5 PM
Sharon Woods Playground
Snacks and ice cream will be provided! Please be sure to bring your swimsuit, towels and sunscreen. This is the perfect opportunity to meet up with your friends or make new friends! Either way, it will be a fun day. If you have never been to this park, it is a dry playground area connected to a spray park. There is also a man-made stream for children to dip their feet in. There are covered picnic tables, so babies can hang out in the shade.
The whole family is invited, so bring parents, siblings, grandparents, aunts and uncles! This is a free event. If you have any questions, please contact Jena Wells at [email protected].
Register
For families of all ages
Sunday, August 6 | 3 - 5 PM
Lunken Airport Playfield
Our Summer Picnic is the perfect place to connect with friends and family and a great way to celebrate the summer! We hope to see you once again at the Lunken Airport Playfield. This event is free for our families; we just ask that guests please bring a side dish or a dessert to share.
Last Name A - L: Dessert Last Name M - Z: Side Dish
Register
iCan Swim Camp
July 17 - 21 | Clippard YMCA | Ages 3 & Up
The iCan Shine mission is to provide unique learning opportunities in recreational activities for people with disabilities. Each person's abilities are embraced and nurtured to foster an environment where everyone can SHINE! We are pleased to offer this aquatics program to people with disabilities and look forward to helping your family member learn to reach their aquatic goals in and around aquatic environments.
iCan Swim is a weeklong program (Monday through Friday).
Each swimmer attends the same 30 or 60 minute session each day of camp Monday through Friday.
There are 4 - 6 swimmers per session with 1 volunteer assigned to each swimmer (1:1 ratio). Swimmers will not be allowed in the water without a volunteer.
Trained iCan Swim staff will conduct the camp.
There will be a parent orientation on Sunday, July 16th. Questions? Contact our School Age Matters Coordinator, Joanie Elfers
at [email protected] or 513.761.5400.
Register
Join us on Facebook!
NEW DSAGC Early Matters
Facebook Group!!
I will be adding community information, opportunities,
educational information about topics that pertain to our
ages (0 - 5 years), fun pictures of all of your children,
beautiful pictures of the new babies in town, etc. It’s
also a place for you to ask questions that may need to
be answered by those a couple years ahead of your
child. It is supportive, welcoming and respectful!
See you there!!!
Hospital Care Packages
DOWN SYNDROME ASSOCIATION OF GREATER CINCINNATI
Is your child (18 years and younger), with Down
syndrome, spending three or more days in the hospital?
The Down Syndrome Association of Greater Cincinnati
would love to support you during this difficult time.
Please register to receive a Hospital Care Package. We
are thinking about you and hope that this small token will
put a smile on your face. You will find meal tickets,
snacks, cards/stamps, activities, books, etc. Please
remember, if you need anything we are here. Please
complete the registration form at www.dsagc.com/
hospital-care-packages.
If you are an extended family member or friend,
you are welcome to complete the registration for on
behalf of the family in the hospital. (One Hospital
Care Package per family per year, please.)
For questions about the Hospital Care Package
program, please contact Jena Wells at
[email protected] or call
513-761-5400.
Dear Thomas Center Family,
As a family connected to the Thomas Center and Cincinnati Children’s Hospital Medical Center, we wanted to
pass along to you an opportunity to participate in a research study. This study is being conducted by the Divi-
sion of Developmental and Behavioral Pediatrics at Cincinnati Children’s Hospital Medical Center. This study
seeks to understand the relationship between behavior and parental stress for children and adolescents with
Down syndrome. The study will include behavioral parent training. The focus of this study is with children and
adolescents ages 3-12, who have Down syndrome and one of their parents. If you are interested in you and
your child participating in this study, please read the information below.
INFORMATION ABOUT THE STUDY
This study will last for 22 weeks and include the following:
You and your child will:
* Come to Cincinnati Children’s for three visits (Screen, Week 10, Week 22) to complete questionnaires and
have him/her evaluated for their cognitive and executive functioning (ability to plan, solve problems, etc.).
You will:
* Come to Cincinnati Children’s to take part in hourly educational sessions for 9 weeks. One additional option-
al session will offered.
Parents interested in participation will be given a consent form that thoroughly explains all of the details of the
study. A member of the study staff will review the consent form with you and will be sure that all of your ques-
tions are answered.
To learn more about this research or to sign up for this study, please contact Hilary Rosselot at 513-636-4134
Thank you for your consideration.
Sincerely,
Anna Esbensen, Ph. D. Rebecca Shaffer, Psy.D
Assistant Professor of Pediatrics Assistant Professor of Pediatrics
The Jane and Richard Thomas Center for Down Syndrome The Kelly O’Leary Center
Training Opportunities for Families and Professionals presented by
The Kelly O’Leary Center for Autism Spectrum Disorders and
Division of Developmental & Behavioral Pediatrics with Support from
Hamilton County Developmental Disabilities Services (HCDDS)
All classes are held on the 5th floor of the Medical Office Building @ 3430 Burnet
Ave. Cincinnati, OH 45229
A short lunch break is provided during all-day classes; onsite café available.
There is no food served during evening classes. Attendees are invited to bring food/snack for themselves & are welcome to eat during classes.
Classes are for adults-only including parents, professionals, and others caring for or working with children and adolescents with ASD or other related developmental
disabilities. Classes are free of charge unless otherwise specified.
For all classes you must register to attend: Jennifer Gastright @ 513/636.2742; [email protected] or [email protected]
Friday, June 9
9:00am-3:30 pm
Cost $50 per participant to cover the cost of a
book and supplemental materials
UNDERSTANDING BEHAVIOR IN INDIVIDUALS WITH ASD/DD
This day-long workshop is for professionals who work with individuals with ASD/DD. The focus of the workshop will be on fundamental behavioral principles including functions of behavior, preventative strategies, reinforcement, and visual supports.
Instructors: Jennifer Smith, PsyD, Psychologist-TKOC
& Outreach Coordinator Janet Seide, BS Family Outreach Associate
Registration for the 2017 National SLN Conference in Hartford, CT is going well. We already have
people registered from 21 states and 2 countries! In addition to registering yourself for the
conference, please continue to advertise the conference on your social media pages and in personal
messages to siblings in your state. At the bottom of this email, please find a short paragraph that
you can use to share information about the conference. Of course, if you have pictures or stories
from your attendance at previous SLN conferences, please feel free to share these with your
networks also!
Please consider ways that your state chapter can support siblings who would like to attend the conference. We are so
pleased to see that many state chapters are offering conference scholarships to cover the cost of conference registration
for siblings from their state. If your state would like to do this, please feel free to contact me and I can help you advertise
and create a scholarship application. Also, you might consider contacting your state's Developmental Disabilities Council
to see if they have funds available for family members to attend conferences. If financial support isn't available, maybe
you could offer your members the opportunity to carpool, share hotel rooms or travel together.
Finally, I want to let you know that on the second day of the conference, we have built in 30 minutes
specifically for state chapters to meet with their members. We recognize the importance of this
valuable time to meet and collaborate with fellow siblings from your states.
Please feel free to contact me if I can help you as the conference approaches.
Sincerely, Amy
The Sibling Leadership Network (SLN) is excited to invite you to the
2017 National SLN Conference in Hartford, CT on June 24 and 25. The
conference provides an opportunity for siblings of people with disabilities from across the nation to
connect with each other. Siblings at the conference will share stories and network, hear from
national experts on sibling services and supports, learn about new research initiatives, and gain
insight on sibling experiences. For more information and to register, please visit the SLN
Conference website http://siblingleadership.org/2017-sln-conference/
Special Needs Day
WHERE: Scene75 Entertainment Center Cincinnati: 876 State Route 28 Milford, OH 45150
WHEN: The first Thursday of every Month
AGE LIMIT: There is no age restr iction on the person with special needs.
FOR QUESTIONS PLEASE CONTACT: Cincinnati Location: 513 -965-4045 or email [email protected]
WHY IS SCENE75 OFFERING THIS UNIQUE PROGRAM? Research has shown that video gaming can help develop social and motor skil ls, improve hand/eye co-ordination, reaction time, and recognition.
WHAT IS THE MAIN FOCUS OF THE SPECIAL NEEDS PROGRAM? The main focus of our Special Needs Program is to use our interactive gaming room, called The Chaos Room, to help build motor and social skil ls, recognition, reaction time and hand/eye coordination. The Chaos Room is an interactive gaming theater where you can play video games on 15-foot HD projection screens online or off line.
WHAT ELSE DOES SCENE75’S SPECIAL NEEDS PROGRAM INCLUDE? A $10.00 Arcade Game Card granting access to play any of our over 100 arcade games. Arcade games help with reaction time, hand and eye coordination, recognition, and motor skil ls. One Spin Zone Ride – A fun dodge-car experience that helps with reaction time, recognition, as well as motor and social skills. Nine Holes of Black Light Mini Golf in one of our two themed courses. Mini Golf helps with hand/eye coordination, social skil ls and motor skil ls.
SIBLINGS Siblings can, and are encouraged to, participate to make things easier and more comfortable for the individual with special needs. However, attractions for siblings are not free. Siblings can purchase the same game card for a discounted price of $14.99 each.
PARENTS AND GUARDIANS Parents and/or Guardians are required to stay and help the person with special needs. It wil l make the person with special needs and the Scene75 Staff Members more comfortable, making the experience
more enjoyable for everyone!
Register
Community Groups A Community Group is designed to create opportunities for families that have children with Down syndrome to
network and share common interests, concerns, challenges and information. They do this through community
events, informational meetings and Facebook groups. All of our community groups are led by service-minded
volunteers with the help of our Community Groups Coordinator.
AREA SPECIFIC GROUPS
Butler/Warren
Serving families in Butler and Warren counties
BACH
Serving families in Brown, Adams, Clinton, Highland and surrounding
counties
Eastside
Serving families in the Cincinnati Eastside area and downtown Cincinnati
KIDS
“Kentuckians Interested in Down Syndrome” serves families in Northern
Kentucky
Westside
Serving families in the Cincinnati Westside area and downtown
Cincinnati
SPECIAL INTEREST GROUPS
African American Family Network (AAFN)
Serving families by providing information, support and networking
D.A.D.S.
Discussion and networking on the aspects of being the father of a
child with Down syndrome
Hispanic Family Group
Social and educational opportunities for Spanish-speaking families
*please contact Marina at 513.490.2834
Teen Club
Serving teens ages 13—18 through social opportunities and
networking
Grandparents Facebook Group
Get connected with other grandparents and share great stories about
your grandchildren
We also offer….
BIRTH YEAR
GROUPS 2011 - 2017
Meet families with children born the
same year as your little one!
Community Groups Coordinator | Amy Iten
[email protected] • 513.761.5400
June Calendar Sunday Monday Tuesday Wednesday Thursday Friday Saturday
1 2 3
Buddy Up Tennis (ages 5 & up)
4 5 6
Summer En-
richment
Butler/
Warren - La-
dies Night
Out
Music Thera-
py (ages 3 - 6
years)
7
Summer En-
richment
Harrison's
Hall of
Famers Ice
Cream Fund-
raiser
Team Lilly
Fundraiser
8
Summer En-
richment
9 10
Joggin for
Joss Golf
Outing
11
Westside - Clip-
pard Park Fami-
ly Outing
Butler/Warren -
Family Event
12 13
Summer En-
richment
Music Therapy
(ages 3 - 6
years)
14
Summer En-richment
15
Summer En-richment
16 17
Buddy Up Tennis (ages 5 & up)
18 19
Golf Tourna-ment hosted by Dave Lap-ham
20
Summer En-richment
BY 2012 - MNO
21
Summer En-
richment
21 Series -
Puberty
22
Summer En-
richment
Butler/
Warren - 0-5
Playgroup
23
Independent
Living Retreat
(ages 18 &
up)
24
Independent
Living Re-
treat (ages
18 & up)
Allie's Army
and Liam's
Legion Corn-
hole Tourna-
ment
25
Independent
Living Retreat
(ages 18 & up)
26 27
Summer En-
richment
28
Summer En-
richment
29
Summer En-
richment
30
July Calendar
Sunday Monday Tuesday Wednesday Thursday Friday Saturday
1
2 3 4 5 6
Sign Lan-
guage (ages 0
- 5)
Butler/
Warren - La-
dies Night
Out
7 8
9
Early Matters
Ice Cream Social
Fitness Series
(ages 18 & up)
10
Dramakinetics (ages 3 - 5)
11 12 13
Sign Lan-
guage (ages 0
- 5)
14
D.A.D.S. Night
Out - REDS
game
15
Signing Time Concert with Rachel Cole-man
Team Brook-lyn's Barn-yard Bash
16
Fitness Series
(ages 18 & up)
Butler/Warren
- Ages 6-12
Potluck
17
iCan Swim Camp
Dramakinetics (ages 3 - 5)
18
iCan Swim Camp
19
iCan Swim
Camp
20
iCan Swim
Camp
Sign Lan-
guage (ages 0
- 5)
21
iCan Swim
Camp
21 Series -
Parent Panel
22
K.I.D.S. -
Family Picnic
23
Fitness Series
(ages 18 & up)
BY 2016 - Fami-
ly Meet Up
30
Fitness Series
(ages 18 & up)
24
iCan Bike Camp
Dramakinetics (ages 3 - 5)
31
Dramakinetics (ages 3 - 5)
25
iCan Bike
Camp
Relationship
Series (ages
18 - 25)
26
iCan Bike
Camp
27
iCan Bike
Camp
Sign Lan-
guage (ages 0
- 5)
28
iCan Bike
Camp
29
Buddy Up Tennis (ages 5 & up)
