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 [email protected]513.761.5400
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Early Matters E-Newsletter · In Occupational Therapy Kristyn Turner brings expertise in feeding and early childhood development. She is a member of the young childhood team, infant
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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.
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.
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
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].
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
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
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.
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
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