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School Age Matters E-Newsletter
January 2019
5 Ways to Support Siblings in
Special Needs Families By Alyson Krueger
Does your child with Down syndrome have siblings? If so, read up! This is an article discussing much needed support for siblings. —Joanie
1. Talk openly about the situation
Dr. Emanuele says It’s essential for parents to clearly explain what is going on to siblings and answer
questions they may have. “Some siblings may not fully understand what is happening with their brother or
sister. They may feel guilty about it, that they somehow caused it. Or they may feel like they aren’t as
important as their brother or sister because they don’t get as much attention.”
It’s essential for parents to listen to concerns the other children may have, and
reassure them that you love them. “Let them know, ‘I hear you, I see you,’ ” she
added.
Parents don’t have to use formal jargon like ADHD or autism or OCD. But they
need to describe the behavior that kids might find concerning, and make it clear
that it isn’t willful. Kleinhandler found it helpful to explain to her daughters that the
disease was just like a bully pressuring their sister to do things she wouldn’t
otherwise.
Speaking in terms of strengths and weaknesses is often helpful, suggests David
Anderson, a clinical psychologist at the Child Mind Institute. “One sibling might
have difficulties with emotional dysregulation”—getting emotional or melting down
when things don’t go his way, he said. “But another might not be too good at
basketball. So maybe your brother gives you a few extra shots in basketball, and
he might need some slack because he has difficulty staying calm when you’re
playing board games.” It works for parents, he adds, because it avoids targeting the kid with special needs.
Joanie Elfers
School Age Matters
Coordinator
2. Spread the support around
When you have a child with special needs who needs a great deal of
support and encouragement, the other children may feel that their
achievements are taken for granted, they not getting as much praise as
the struggling child.
So it’s important, as Dr. Anderson puts it, to “spread the sunshine
around.” If you’re, say, really trying to reinforce one sibling’s behavior,
instead of ignoring another sibling’s bid for attention, look for
something very soon afterwards that’s positive about what that sibling
is doing, and give him the same level of positive reinforcement.”
3. Set aside time for each child
All kids, especially those who have a brother or sister who takes a lot of
attention, need one-on-one time with parents. It can be challenging to
fit in, but even small amounts of time, on a regular basis, can help a
child feel loved and valued, explains Mandi Sliverman, a clinical
psychologist at the Child Mind Institute.
“Parents have to remember to give every sibling attention,” noted Dr. Silverman, “”It may not be equal, but it
has to be meaningful and consistent.” She suggests spending 10 uninterrupted minutes with each child
before he or she goes to sleep, reading or coloring or doing a puzzle together.
Liza Long, who has 5 children, including one with bipolar disorder, sets aside time for each of her children to
have dates with her. They get to choose what they want to do, and it’s something they look forward to. “I try
to plan dedicated time with each of the kids because so much of our attention will go to my son with mental
illness,” Long said. “You have to be really sensitive to that.”
4. Try to treat all children the same
Dr. Emanuele says she sometimes sees parents who have a child with special needs worrying that their
other children aren’t getting a “normal” upbringing. They feel guilty and as a result they may let them get
away with bad behavior or have whatever they want.
“Sometimes parents will be permissive with the other kids because they feel bad,” she said. “But these
children still need to learn to be responsible for their decisions and their negative behavior, and that can’t
slide.”
5. Look at the positive
Keep in mind that growing up with a special needs sibling teaches valuable skills and empathy, notes Dr.
Silverman. “Sometimes children who have siblings with special needs have a level of compassion that makes
them especially good friends, and they have a lot of friends, because they are patient and positive and
understanding.”
Long said her kids are unusually empathetic to kids who are struggling with emotional or behavioral issues.
Click here to the full read the article online
Empowerment Classes
Teen Kitchen Skills (ages 13 - 17)
January 23-February 20 (Wednesdays) | 6-7pm
DSAGC Hatton Foundation Community Room
Instructed by Chef Miles Meeden
Chef Miles and volunteers will help participants
learn to cook a new recipe each week! Teens will
learn basic kitchen and cooking skills while
interacting with same age peers.
**This class if FULL. Email Emma Ganiban to be
put on a Waiting List: [email protected].
Sky Zone (ages 6—22)
Monday, March 18 | 5:30-6:30pm
Sky Zone, 11745 Commons Drive, Springdale, OH 45246
Come jump with friends on Sky Zone’s wall-to-wall trampoline courts! $10 for 1 hour, socks not included.
Payment will take place at Sky Zone.
Register
Social Opportunities
21 Series
Securing your Family’s Future
Monday, January 21 | 6:30-8pm
DSAGC Hatton Foundation Community Room
Presented by Jim Singler, Calfee
Do you find yourself asking questions like: How can I start now to prepare for my child’s future? Why do I
need a will? What is a power of attorney? Should I have a trust or an ABLE account? What kind of trust
should I set up? What is a letter of intent?
Join us as Jim Singler covers topics such as:
Estate Planning: Discussion of Healthcare Powers of Attorney, Living Wills, General Powers of Attorney,
Last Wills and Revocable Living Trusts
Special Needs Trusts: What are they? What different types are there?
Able Accounts
Guardianship
Register
Racial Disparities in Health Outcomes among
African- Americans with Down Syndrome
Thursday, February 21 | 6:30-8pm
DSAGC Hatton Foundation Community Room
Presented by Dr. Anna Esbensen and Dr. Lauren Wang
African-Americans with Down syndrome are reported to experience significantly shorter lifespans than their
Caucasian peers. This presentation provides the audience with updated life expectancies based on
Tennessee administrative databases, and an understanding of how racial disparities in health and
hospitalizations contribute to these disparate life expectancies. The doctors will discuss ways to promote
better health outcomes.
Register
After you buy your ticket to the dance, you can sign-up for our Let's Get Fancy event for some pre-Winter Dance pampering! Ladies can get their hair, nails and make-up done by professionals. Gentlemen can get their hair gelled,
get tips on how to tie a tie and learn about appropriate cologne application.
After getting *glam*, a limousine will escort the group to the dance in style. Please note, the limo will only transport TO the dance. Participants must have purchased a ticket to the Winter Dance and have a parent/guardian meet
them at the Newport Syndicate.
Friday, February 1 Females arrive at 3:30 PM; Males arrive at 5 PM
4623 Wesley Avenue, Suite A Cincinnati, OH 45212 *ages 15 & up
"Let's Get Fancy" is FREE to attend, but you must RSVP to Emma Ganiban at [email protected]!
There are only 20 spaces available (10 female & 10 male) and will fill on a first come, first serve basis.
**Registration closes on January 18
In the SPOTLIGHT!
Before the holidays, Ryan passed his driving exam! He worked very hard for this and achieved an amazing accomplishment.
Ryan’s family and the DSAGC is very proud of him!
If you have an inspirational story that you would like highlighted in our SAM
E-Newsletter, email Emma Ganiban: [email protected]
DSAGC Family Resources
Support at Every Age
Community Participation Fund
Hospital Care Packages
Community Groups
Our School Age Matters Coordinator, Joanie Elfers, is available to assist parents and help provide direction
as they learn about the IEP process, effective teaching strategies and making social connections. She can
serve as an advocate at any school or IEP meetings your child has throughout the years. She can be reached
Joanie and our Outreach Coordinator, Mariclare Hulbert, are available to deliver “Peer Presentations” in the
classroom setting to enhance both the student and teacher’s understanding of Down syndrome. You can also
access our “More Alike Than Different” video here.
We have a limited amount of scholarships available for individuals with Down syndrome to participate in
community activities (such as camps, soccer, swim lessons) and therapies. There is also funding available
for parents to attend educational meetings or conferences. We pay half of the request (up tp $200 per
year). You must live within our 12 county area to be eligible. Please contact Lisa Steele
at [email protected] for more information.
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. Click
here to receive a Hospital Care Package.
The vision of the ‘Community Groups’ is to provide support, connections, information, and be a resource to
families while creating a warm, welcoming, empathetic environment. 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.
Each Community Group is considered an extension of the DSAGC, but autonomy and decision making
authority is given to the groups so they can effectively meet their unique purpose and goals for serving
families and individuals in their community. Click here to see a full list of Community Groups.
DSAGC Teen Club: Serving teens ages 13 - 18 through social opportunities and networking
$5.7 million NIH Research Funding to
the Thomas Center and Colleagues The Thomas Center for Down Syndrome at Cincinnati Children’s Hospital Medical Center is proud to announce receipt of two federal
research grants supporting children with Down syndrome. Both grants were awarded by the Eunice Kennedy Shriver National
Institute of Child Health and Human Development (NICHD). Anna Esbensen, PhD, Research Director of the Thomas Center,
received a 5-year, $2.6 million grant to continue her work on evaluating cognitive outcome measures for children 6-17 years with
Down syndrome. If you are interested in more information, please contact us as 513-803-3641 or email Emily Hoffman at
[email protected] (see information flyer below). Dr Esbensen is also collaborating with Angela Thurman, PhD, at the
University of California-Davis MIND Institute, on a 5-year, $3.1 million grant to evaluate language outcomes in children 2-8 years with
Down syndrome. More information will be coming soon on how to participate in this project.
Dr. Susan Wiley, co-director of the Thomas Center for Down Syndrome, also partnered with Drs Raouf Amin and Stacey Ishman from
the Divisions of Pediatric Pulmonary Medicine/Sleep Medicine and Pediatric Otolaryngology – Head and Neck Surgery at Cincinnati
Children’s Hospital. They received funding to expand their current study on the neurocognitive and school performance effects of
removal of adenoids and tonsils for snoring to focus on children with Down syndrome. This study will enroll children with Down
syndrome undergoing tonsil and adenoid removal for snoring or sleep apnea. This study includes 7 centers across the U.S.
(Philadelphia, Cleveland, Dallas, Boston, Ann Arbor, Norfolk, and Cincinnati). If you are interested in more information, please contact
us at 513-636-0607 or email Belinda Carter at [email protected].
These projects could not have been funded without the strong collaboration between families, the DSAGC and the Thomas Center.
We are honored to work in a city with so many dedicated families, a strong Down syndrome association, and a wonderful partnership
Research Studies
Webinars
1.5 Professional Training Contact Hours - Certificate of Participation Provided.
30% Group Discount Available when Registering 5 or More Participants
Contact Seneca for Group Discount Information
Sexual Harassment Prevention & Response
Monday, January 14th 3:00 p.m. (Eastern Standard Time)
Friday, January 18th 11:30 a.m. (Eastern Standard Time)
Thursday, January 24th 1:00 p.m. (Eastern Standard Time)
Tuesday, January 29th 10:00 a.m. (Eastern Standard Time)
Preventing Abuse, Neglect & Exploitation Webinar Dates & Times
Wednesday, January 16th 3:00 p.m. (Eastern Standard Time)
Thursday, January 17th 2:00 p.m. (Eastern Standard Time)
Sexuality & Developmental Disabilities Webinar Dates & Times
Wednesday, January 9th, 2:00 p.m. (Eastern Standard Time)
Practical Approaches to Behavior Management Webinar Dates & Times
Wednesday, January 16th 1:00 p.m. (Eastern Standard Time)
Tuesday, February 12th 1:00 p.m. (Eastern Standard Time)
NEW WEBINARS ADDED DAILY
Don't see a date or time that meets your needs?
Contact us at [email protected] and we will schedule a time that fits into your
busy day!
Click here to register!
Community Opportunities
The DSAGC does not endorse, recommend or support any particular regime,
therapy, activity, camp or treatment. We welcome articles and information from
parents, professionals and other interested parties.
2019 Sessions
January 12 January 26 February 2
February 16 March 2 March 16 March 30 April 13 April 27 May 4
May 18 June 1
June 15
4 - 5:30 PM The Club at
Harper’s Point
Safety Training: Self-Awareness and Self-Care
Learn what is public versus private behavior, how to dress for the
weather, first aid, how to be aware of your surroundings and more!
Register by contacting Bri Combs at 513-785-2884 or
Date: Tuesday, February 5 at 10:30am
Tuesday, February 5 at 6:00pm
Location: Butler County Board of Developmental Disabilities
282 N Fair Ave, Hamilton, Ohio 45011
Sensory-Friendly Performance: Sunday, March 31, 2019 at 10:30am
Location: Arnoff Center for the Arts (Procter & Gamble Hall)
$20 per ticket!
Click here for the full schedule and to purchase tickets
In our continuing mission to bring dance to every member of our city, sensory friendly
performances accommodate children, families and adults who have found visiting the
theater overwhelming due to their specific needs.
January Calendar
Sunday Monday Tuesday Wednesday Thursday Friday Saturday
1
Office Closed
2 3 4
Movement
Class (ages 2
- 5)
5
6
TEEN CLUB - Painting
7 8 9 10 11
Movement
Class (ages 2
- 5)
12
Advocates In
Action (ages 18
& up)
Buddy Up
Tennis (ages 5
& up)
13 14 15 16 17 18
Movement
Class (ages 2 -
5)
19
AAFN - Open
House and
Resource Fair
20 21
21 Series -
Securing Your
Family's
Future
22 23
Teen Kitchen
Skills (ages
13 - 17)
24 25
Movement
Class (ages 2
- 5)
26
Motivation in
Education
Conference
Buddy Up
Tennis (ages 5
& up)
27 28 29 30
Teen Kitchen
Skills (ages
13 - 17)
31
February Calendar Sunday Monday Tuesday Wednesday Thursday Friday Saturday
1
Let's Get
Fancy!
Movement
Class (ages 2
- 5)
Winter
Dance (ages
15 & up)
2
Grandparents
Group -
Luncheon
Buddy Up
Tennis (ages 5 &
up)
3 4 5 6
Teen Kitchen
Skills (ages
13 - 17)
7
8
Movement
Class (ages 2
- 5)
9
10
DSAGC
Community
Group
Leaders
Workshop
11 12
Butler/
Warren -
Story Time
and Craft
13
Teen Kitchen
Skills (ages
13 - 17)
14 15
Movement
Class (ages 2
- 5)
16
Buddy Up
Tennis (ages 5 &
up)
AAFN - Dinner
Meeting
17 18 19 20
Teen Kitchen
Skills (ages
13 - 17)
21
21 Series -
Racial
Disparities in
Health
Outcomes
among People
with Down
Syndrome
ADULT Kitchen
Skills (ages 18
& up)
22
Movement
Class (ages 2
- 5)
23
O.W.N. Day
(ages 18 & up)
Physical
Therapy (ages 0
- 1)
24 25 26 27 28
ADULT Kitchen
Skills (ages 18
& up)