february 2017 sibling support age... · read more joanie elfers school age matters coordinator ......
TRANSCRIPT
School Age Matters E-Newsletter
February 2017
SIBLING SUPPORT Does your child with Down syndrome have siblings that do not have a disability? If so, and if you have not
already thought about it, you might want to read this article titled “Eight Things Siblings of Children with
Special Needs Struggle With” from the Washington Post. A lot of times and at no fault of their own, families
are so focused on improving outcomes for their child that has a disability, that they do not realize the other
siblings might be struggling with various issues. This article highlights some of those struggles and it offers
suggestions on how you can attend to the siblings’ concerns and needs.
Eight things siblings of children with special needs struggle with
Having a sibling with special needs is a reality many children are born into, including my three typically
developing children. Of all the things my children experience that I never
did, their experience of growing up with a sister with significant disabilities
is something I struggle to understand, even as I watch it unfold daily.
The advantages to having a brother or sister with special needs are
numerous and include being more empathetic, more responsible and more
resilient. However, these typically developing siblings also shoulder
tremendous burdens that are not often or easily discussed.
Documentary filmmaker Rachel Feichter has a typically developing 11-
year-old and a 7-year-old, Talia, who has special needs as a result of a
neurological autoimmune disease, Hashimoto’s encephalitis. Feichter
discovered that there is a lack of information regarding the full experience
of having a sibling with special needs when she searched for information
to help her older daughter. She wanted to better understand the needs of
her typically developing daughter, as well as help her daughter connect
with other siblings with the same struggles, so Feichter began interviewing
siblings of individuals with special needs for her in-progress documentary,
which has the working title “Not Typical.”
Read More
Joanie Elfers
School Age Matters Coordinator
513.761.5400
DISABILITY STARTER KIT “What You Should Know Before You Apply For SSI Disability Benefits For Your Child”
The fact sheet answers frequently asked questions about applying for SSI child disability benefits. It includes
the definition of disability for children under age 18, information about the SSI program, and other important
information about state and local medical assistance. It provides a link to the online Child Disability Report.
Child Fact Sheet
“Checklist - Child Disability Interview ”
This is a list of information and documents for your child that you will need for the disability interview or to
complete the Child Disability Report on the Internet.
Child Checklist
“Medical And School Worksheet – Child.”
The worksheet can help you to prepare for the disability interview or complete the Child Disability Report on the
Internet. It lists the information that we will ask you about your child and provides space to write down this
information.
If you use the Child Disability Report on the
Internet, you will type your Worksheet
information directly into the report.
NEW - 21 Series!
Understanding Sensory Processing Differences
February 21 | 6:30 - 8 PM
DSAGC Hatton Foundation Community Room
Presented By Joan V. Dostal, OTR/L
Sensory differences can impact the lives of children including those with Down syndrome. Sensory seekers and sensory avoiders engage with their world in ways that can limit participation in daily routines. Challenges with praxis and postural control complicate how children learn and develop new motor skills. Understanding some of the behaviors of children with sensory processing disorders allows the parent to start problem solving around common sensory based concerns and possible tools to explore.
Joan V. Dostal OTR/L brings 40 years of clinical experience in a wide range of settings, including an outpatient SI clinic, early intervention, schools, newborn intensive care and follow up, and a mental health clinic. She has, for the past 33 years, been at Cincinnati Occupational Therapy Institute with responsibilities as clinician, co-owner and now clinical specialist. Her specialty area is sensory integration as she maintains a small caseload of children and adults, mentors COTI staff and provides trainings for families and professionals.
Charting the Lifecourse
March 21 | 6:30 - 8 PM
DSAGC Hatton Foundation Community Room
Presented by Celia F. Schloemer
Do you worry about your child's future? Do you feel supported by your community? Do you feel supported by formal DD services? Do you feel overwhelmed with the amount of resources available? During this workshop, you learn about the "good life" and how you can utilize comprehensive and integrated systems across each of life's domains. Our presenter will show you how to map out your future to reach "the good life" as you see it.
Celia Schloemer is the Family Support Coordinator at the University of Cincinnati-University Center of Excellence in Developmental Disabilities, (UC-UCEDD). She comes to this position with more than 12 years experience working directly with families of school-aged children with disabilities as an educational advocate. In her present position, she supports individuals with disabilities and their families across the life span by connecting them to resources, assisting them in accessing information and offering trainings that improve outcomes. Celia also brings to her work the perspective of being a sister-in-law, an aunt and a sibling to individuals with developmental disabilities.
If you have any questions, please contact Jena Wells at [email protected].
Register Today!
Starting in February, on the 21st of each month, we will host an educational workshop for those in the DSAGC community. Workshop topics will change each month and local experts will present in their area of expertise. Some of
the topics include Sensory Processing, Puberty, Healthcare Transitions and more! Parents, professionals, relatives and self-advocates (15 & up) are welcome! These workshops are free to attend, but registration is required.
CINCINNATI, OH
The Buddy Up Tennis Program hosts weekly 90-minute clinics. These clinics are broken down into 30 minutes of fitness conditioning, and 60 minutes of professional tennis instruction. Buddies (Volunteers) are partnered with Athletes, to provide one-on-one attention and grow meaningful connections and relationships. No tennis experience is required. Team T-shirts and racquets are provided.
All children ages 5 or older and or adults with Down syndrome are welcome to participate in Buddy
Up Tennis as an "Athlete," regardless of ability or prior experience.
LOCATION
The Club at Harper’s Point
8675 East Kemper Road
Cincinnati, OH 45249
[email protected] > Email to Register!
Thanks Lisa Arnold and
Kathy Szudejko for
coordinating Buddy Up
Tennis for our Greater
Cincinnati families!
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.
DO YOU HAVE A CHILD WITH
DOWN SYNDROME WHO PLANS TO
PARTICIPATE IN
POST-SECONDARY EDUCATION???
Ruby’s Rainbows is a non-profit organization who gives individu-
als with Down syndrome scholarships to fund post-secondary edu-
cation. It could be a college/university or for vocational training.
Visit the following website to obtain more information as well as to
see stories of former recipients. Deadlines for 2017 scholarships
are in January 2017. https://rubysrainbow.org/
Adapted Swim Lessons Special Olympics Swimming
Adapted Lessons
ME Lyons (Anderson) - Sat 8:30-10am
RC Durr (Burlington KY) - set up as Private Lesson
Gamble Nippert (Westwood) - Mon 3-4pm and 4-5pm
Clippard (Colerain area) - Tue 6:30-7pm
Powell Crosley (Finneytown) - set up as Private Lesson
Blue Ash - set up as Private lesson
Special Olympics
ME Lyons (Anderson) - Sat 12:30-1:30pm (listed as Adaptive Swim Team)
Blue Ash - Sat 4-4:45pm and 5-5:45pm (level 1 and level 2)
CONTACT MARSHA WALSH AT [email protected]
Intended for individuals on the autism spectrum and their families
The Children’s Theatre of Cincinnati is proud to present TCT’s first ever Sensory-
Friendly performances, intended for individuals on the autism spectrum, as well as people with other developmental or cognitive disabilities who may benefit and their
families.
To create a Sensory-Friendly performance, the show is being performed in a welcoming, supportive environment for those with sensory challenges. Slight
adjustments to lighting and sound will be made for the performance. Effects such as fog, strobes, and lights that extend into the audience will be minimalized. In the
downstairs theater lobby, there will be an area staffed by specialists in the field where you and your child can take a break from the performance.
A downloadable Social Narrative (in Word format) with pictures of the theatre and the production will be available on our website, designed to personalize the experience for individuals wishing to prepare for the show. Additional resources for this performance, such as a Character Guide, and a Guide to Attending the Show will also be available
here on our website approximately one week before each show.
The designated “sensory-friendly” performance will occur during the Monday 12:30 pm performance for each production.
The Wizard of Oz: Monday, February 13 at 12:30 PM
Tarzan the Stage Musical Based on the Disney Film: Monday, April 10 at 12:30 PM
Questions about booking? Please call Pam Young at 513.569.8080 ext. 13 or
email [email protected]
Learn More
Sensory-Friendly Performances
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)
Please Note:
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 de-
velopmental 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]
Wednesday, March 8
9:00-11:30AM
COST $0
WHAT THE HECK DO I
DO NEXT?
NEXT STEPS AFTER
THE DIAGNOSIS
This session is for parents/caregivers after
their loved one has received a diagnosis from
DDBP. This session will address the following:
What are the available services through DDBP?
How to access available resources in the com-
munity after the diagnosis. This class is for
families with children ages 2-14.
Instructors: Abbey Walter, LISW-S, Social Work-
er DDBP-TKOC
Janet Seide, BS Family Outreach Associate,
DDBP-TKOC
Thursday, March 16
5:30-7:30PM
COST $0
OPTIONS FOR MEN-
STRUAL MANAGE-
MENT IN TEENS WITH
SPECIAL NEEDS
The start of menstrual periods in teens with
special needs can cause concern for families
and caregivers related to hygiene and menstru-
al management. This presentation seeks to
inform parents/caregivers and providers on
the variety of hormonal options available for
menstrual management and contraception.
Instructor: Lisa Reebals, RN, MSN, CNP-BC
Division of Pediatric and Adolescent Gynecology
March 2017
Building Executive Functioning and Organizational Skills in Individuals with ASD/DD
Friday, April 7th 2017
9:00am-3:00pm
Presented by:
Jennifer D. Smith, Psy.D., BCBA-D
The Kelly O’Leary Center for Autism Spectrum Disorders This workshop, designed for professionals and family members, will focus on deficits often seen in individuals with ASD/DD including difficulties
with organizing, planning, initiating work, and staying on task as well as strategies to address these challenges within the school and home
setting.
Where: Cincinnati Children’s Hospital, Liberty Campus, 7777 Yankee Road, Liberty Township, Ohio 45044
To Register Contact: Jennifer Gastright at [email protected] or 513-636-2742
*Cost of $25 to cover cost of binder and materials. Funded in part by Hamilton County DDS
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
February Calendar Sunday Monday Tuesday Wednesday Thursday Friday Saturday
1
Sign Language
Level 1 (ages 0
- 5)
2
Kitchen Skills
(ages 18 & up)
3 4
Physical Ther-
apy (ages 0 -
2)
Glamour Day
(ages 15 & up)
Winter Dance
5 6
Butler/Warren -
AAC Workshop
Book Club (ages 10
-14)
7 8
Sign Language
Level 1 (ages 0
- 5)
9
Kitchen Skills
(ages 18 & up)
Eastside -
Moms' Night
Out
10 11
Physical Ther-
apy (ages 0 -
2)
Buddy Up
Tennis (ages 5
& up)
12
BY 2013 - Play at
ABC
13
Book Club (ages 10
-14)
14 15
Sign Language
Level 1 (ages 0
- 5)
Sky Zone (ages 6 -
14 years)
16
Kitchen Skills
(ages 18 & up)
Butler/Warren -
Ladies Night Out
17 18
Physical Ther-
apy (ages 0 -
2)
Westside - Kids
Jumping and
Playing
Butler/Warren
- play date 0-5
yrs
AAFN - Pet
Interaction
19 20
Book Club (ages 10
-14)
21
21 Series - Under-
standing Sensory
Processing Differ-
ences
22
Sign Language
Level 1 (ages 0
- 5)
23
Kitchen Skills
(ages 18 & up)
24
Westside - Par-
ents' Night Out
K.I.D.S. - Moms
Night Out
Speaker: Be-
havioral Thera-
pist
25
Physical Ther-
apy (ages 0 -
2)
Buddy Up
Tennis (ages 5
& up)
26 27
Book Club (ages 10
-14)
28
March Calendar Sunday Monday Tuesday Wednesday Thursday Friday Saturday
1
Sign Language
Level 1 (ages 0
- 5)
2
Kitchen Skills
(ages 18 & up)
3 4
Physical Ther-
apy (ages 0 -
2)
Buddy Up
Tennis (ages 5
& up)
5
Westside - Family
Pizza Party
(annual)
6
Buddy Up Tennis
(ages 5 & up)
Book Club (ages
10-14)
7
Butler/Warren
- Ladies Night
Out
8
Sign Language
Level 1 (ages 0
- 5)
9
10 11
Reel Abilities -
Cocktails and
Zombies
12
Eastside - Sunday
Lunch
TEEN CLUB - Meet
up
13
Book Club (ages 10
-14)
14
Advocates In
Action - Ronald
McDonald
House
15
16
17 18
Buddy Up
Tennis (ages 5
& up)
19
Butler/Warren -
World DS Day
Celebration
321 Party (ages
16 & up)
20
21
21 Series -
Charting the
Lifecourse
22
23
24 25
26
World Down Syn-
drome Day 5K
K.I.D.S. - World
Down syndrome
Day Party
27
28 29 30 31