RTS Growth Charts - Take the Survey!
By Cristina Fonseca, Parent
(Left: Chadd, Alexia & Cristina)
INSIDE
RTS Growth Charts
Reasons to Smile: Jason’s Story
Leadership Training for Family
Advocates
NEW RTS Website
Regarding the Syndrome:
iDevice Considerations
RTS Reunions 2012
Resources to Share – NEW
Spanish listserv
Most hospital and primary care centers around the world have
growth charts for children, which use data from "typical"
children, and are not representative of the RTS population.
Around 1990, RTS growth data was collected in order to create
charts specific to RTS. Since there is an increased knowledge of
RTS, and many more cases have been more properly diagnosed
around the world, Raoul Hennekam, MD, PhD plans to update
these curves with data from as many children as possible. In order
to have meaningful results, at least 100 sets of data are needed per
gender per race. So, we need responses from as many families as
possible, in order to update these charts.
With this in mind, a survey has been created, where families can
simply enter their information, which will be collected by Dr.
Hennekam's research team and new updated growth curve charts
will be produced. The timeline for this depends on when we
have enough information from all the families, so we need your
collaboration for this!
Some of the survey questions are being asked to ensure that the
necessary data is being captured. For instance, there is a question
about parents' height and ethnic background, as it is known that
these characteristics have an influence on a child's height. The
timing of the onset of puberty also makes a difference in the
growth of children, so you will also find some questions in this
area.
Please take a few minutes to complete the survey. This will help
all of us have an updated set of growth data, including height,
weight and head circumference measurements.
If you have any questions, please feel free to email Cristina at
[email protected] .
RTS News is published by
The Division of Developmental &
Behavioral Pediatrics at
Cincinnati Children’s Hospital
Medical Center.
Special thanks to the
Dr. Jack Rubinstein Foundation
for its continued support!
To complete the survey in English, please go to:
https://www.surveymonkey.com/s/RTSsurvey1inEnglish
or, to complete the survey in Spanish:
https://www.surveymonkey.com/s/RTSsurvey1inSpanish .
We will make all growth curves available to all support groups
worldwide for free!
We look forward to receiving as many surveys as possible!
Thank you in advance!
• • •
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Reasons to Smile
Being the Best Jason
By Karen Walczak, Parent
I was in the middle of the morning routine one recent
morning and Jason was dribbling his soccer ball
around the house. He stops and says “It is so
awesome!” First off, I was amused that he knew the
word “awesome” – he learned it from his older
brother, Seth – but it also made me think back to when
he was an infant and we didn’t know if he would ever
walk or talk. He is now an active, vocal, lovable 6year old that amazes us each and every day.
Our journey started when Jason was only five days
old. He didn’t have any major medical issues but had
enough noticeable minor issues that our pediatrician
referred us to a geneticist. It was then my husband
and I learned about RTS but were not given an official
diagnosis. Shortly thereafter we moved from Ohio to
Indiana, where Jason started therapy at five months.
During that time he had two minor surgeries and was
seen by a few specialists for his reflux and hypertonia
(tight muscles – very unusual for RTS). Being a tiny
little thing, he earned the nickname ‘Peanut’ by one of
his doctors…and the name naturally stuck.
Without the major medical and feeding issues to deal
with, we focused on his development. We felt we
were looking into a black hole – no one could tell us
what the future would be like for Jason, whether he
would walk, talk, or eventually graduate from school.
With no crystal ball to gaze into, we simply decided
that we would do everything we could for Jason to be
the best “Jason” he could be – one day at a time.
After moving back to Ohio he started at a special
needs preschool. He was soon walking independently
and saying a few basic sounds. We kept going to a
number of specialists and started a regimen of one-onone therapies when he turned 3. He has always been
eager to learn, works hard and, of course, he has that
wonderful, loving RTS personality. He eventually
began attending the local public school system
preschool which had classes with special needs kids
and peer models. He was learning all of the typical
things – colors, numbers, letters – and everyone loved
him and wanted to help him out. During the summer
when he was 4 ½ years old, his verbal communication
took off and he blossomed from a quiet, shy boy to a
fun-loving, talkative boy. His previous preschool
fun-loving, talkative boy. His previous preschool
teachers would stop him in the hall just to hear him
speak – they were so amazed by the transformation.
Jason has always loved to kick a ball so we put him in
a local soccer league geared especially for children
with disabilities. It took a while for him to adjust to
the large group setting but once he did he was running
and kicking along with everyone else. He has so much
fun that we ourselves can’t help but have fun watching
him with the other players.
This fall he started Kindergarten and while this
transition again spelled uncertainty for us, we soon
found he had adapted well. Again, the teachers know
him and love him…and we were told by his
homeroom teacher how his fellow classmates help him
and treat him with kindness that only children can. He
has fit right into the routine, and he can brighten
anyone’s day with his “million-dollar smile”, as his
teacher says. We continue to be amazed by what he
can learn and do, and we are ever aware of the love
and support his community of caregivers has offered.
He is now starting to read, something we had hoped he
might one day do but certainly didn’t expect it to
happen in Kindergarten. We know it will take longer
and more effort for Jason to learn things compared to
other children his age, and therefore we are thrilled by
each tiny milestone and accomplishment. We are not
focusing on the big picture but instead enjoying each
treasure. Over Christmas break Jason learned to play
his first song on piano. He excels at putting puzzles
together. He just loves life – to run and twirl and sing
and wrestle with his dad and Seth. There is nothing
better in this world than when he comes up to me out
of the blue, puts his arms around me, and says “I love
you”.
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The future is still a great unknown. But we have
hope that with the help of his teachers, therapists,
grandparents, family, and many friends, Jason will
continue to learn and to grow. When we ask him if
he’s a good Peanut, he’ll smile and say “No -- I’m the
BEST Peanut”! And we also know he’ll become the
best “Jason” he can be.
Above: Jason having blocks-o-fun
Right: Jason & his loving brother, Seth, off to school.
Below: Rob, Karen, Jason, & Seth tie-dyed out
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Leadership Training for Family Advocates
Are you the family member of a child or adult with a disability?
Would you like to take your advocacy skills to the next level?
Then consider applying to the:
Leadership Education in Neurodevelopmental and related Disabilities (LEND) Training Program
University of Cincinnati University Center for Excellence in Developmental Disabilities (UC UCEDD)
Division of Developmental and Behavioral Pediatrics Cincinnati Children's Hospital Medical Center
The LEND Training Program at Cincinnati Children's Hospital Medical
Center provides family members the opportunity to develop their leadership
and advocacy skills as part of an intensive training program that also includes
trainees who are graduate students from a variety of health and education
disciplines. Family member trainees complete the same rigorous requirements
as other LEND trainees by participating in lectures, discussion groups, team
presentations, team and individual projects, and state-level and national level
policy and advocacy opportunities. To qualify for the family traineeship, the
applicant must be a family member of a child or adult with a developmental
disability, have demonstrated interest in leadership and advocacy, and have a
desire to advocate for people with disabilities and their families. LEND
trainees receive a stipend and must be able to dedicate 16 hours per week (on
average) to the program for nine months (late August to late April).
APPLICATION DEADLINE FOR THE 2012-2013 ACADEMIC YEAR:
APRIL 13, 2012
Learn more about the LEND training program at: http://www.cincinnatichildrens.org/lend or contact
Sheryl Feuer at (513) 803-3364 or [email protected]
New RTS Program Website Starring… Sophie!
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Regarding the Syndrome
Considerations for iDevices as Speech Generating Devices
By Augmentative Communication Speech Language Pathology Specialty Team
Cincinnati Children’s Hospital Medical Center
iDevices are being recognized as a new option in
speech generating devices (SGDs).
It is important to keep in mind that iDevices are one of many possibilities
for people who use augmentative and alternative communication (AAC).
If your family is considering an iDevice for
communication, the following factors are important to
review with your child’s speech-language pathologist:
Choosing a Language System
The language your child has available is important!
iDevices and traditional SGDs offer different
language apps for different people (based on age,
language abilities, physical abilities, and more)
A speech-language pathologist specializing in
augmentative communication can help decide which
language system your child needs
Not all language systems are available as an app
Not all language apps are developed by
professionals or based on research
Social Considerations
Using an iDevice to communicate in the real world
Many people are already familiar with iDevices and
find them user friendly
Some children feel more comfortable carrying a
device that is widely used by their peers
Parents and teachers are likely to feel comfortable
programming and helping a child use an iDevice
iDevices are in high demand, so theft is a greater
concern
Access and Accessories
How will your child use their device?
Vision, attention, and physical skills are important
to consider for successful use of any communication
device
Due to the sensitive screen and scrolling feature, not
all children are able to use an iDevice, or may need
adaptations
Modified access methods (keyguards and switch
access) for iDevices are limited at this time
Many modified access methods are available on
traditional communication devices, including …
- touchscreens
- keyguards
- alternative mouse controls
- eye gaze
- switch access
- and more
The setup, screen size, number of buttons, and
button size on an app will impact a child’s
efficiency, targeting, and accuracy
Appropriate positioning of an iDevice (at a table, on
a wheelchair, or when on the go) may require
carrying cases, stands, or mounts
Portability and Durability
Communication devices need to be portable and
durable for everyday use!
iDevices are small and lightweight
iDevices are easy to set up and use in a variety of
places
Cases and accessories may be necessary to increase
durability
External speakers may be required in noisy
environments
Accessories might add additional weight and impact
portability
Lots of children carry portable electronic devices
(eReader, video game, smart phone, etc.)
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Programming Support and Repairs
How will a broken device be fixed?
Apple is responsible for iDevice repairs and support
only, not for support on specific apps
Tech support varies greatly from app to app
Traditional SGD manufacturers routinely provide
support and service for both the device and the
language system
Insurance will not pay for repair of an iDevice
Insurance will generally cover necessary repairs of
a traditional SGD
Manufacturers of traditional SGDs generally
provide:
- online knowledge base
- phone-in/e-mail tech support
- web trainings
- regional workshops
- local representatives
- availability of loaner devices
Tips to remember
Not all people can use every communication device.
During an evaluation, a speech-language pathologist
and occupational therapist with training in AAC will
be able to help your family find the best
communication device.
A comprehensive evaluation should be completed
prior to purchase or use of an iDevice for
communication.
For more information, contact:
Speech Pathology Department
Cincinnati Children’s Hospital Medical Center
513-636-4641
Cost and Funding
Insurance vs. out-of-pocket vs. funding sources
Generally, insurance and Medicaid do not fund the
purchase of iDevices, but will fund most traditional
SGDs when medically necessary
iDevices need to be purchased out-of-pocket or
using alternative funding sources
iDevices and their accessories are significantly less
expensive than some high tech speech generating
devices
iDevices are generally more expensive than other
beginning communication options
Keyguards, speakers, carrying cases and apps are
an additional cost (range from free-hundreds of
dollars)
Consultation with a speech language pathologist
who specializes in AAC is necessary before the
purchase of any communication app or accessory
Other Applications
Availability of games, books, internet, and more
iDevices offer a variety of apps, such as interactive
games, educational tools, and books
Educational apps can benefit your child’s learning
Leisure apps can distract your child from
communicating appropriately
Access restrictions are limited on iDevices (ex.
certain apps may not be permitted at school, but
can’t be “locked” from use)
Traditional communication devices have some
educational/leisure features and are more easily
restricted
Some Application resources (Apps) for iDevices
(Provided by Sandra M. Grether, Ph.D.,
Division of Developmental and Behavioral Pediatrics,
Cincinnati Children’s Hospital Medical Center,
University of Cincinnati)
Spectronics Inclusive Learning Technologies
Scribd
Apps4stages
SpedApps2: Applications of Applications for
Special Populations
Apps for Children with Special Needs
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Save the Dates! 2012 RTS Reunions & Gatherings…
2012 Midwest RTS Reunion – March 3, 2012 Weekend
An unstructured weekend of connection and water park fun for families
touched by RTS. We will have a meeting room available to
us all weekend and will gather for a pizza dinner on Saturday
evening. Choose whether you stay Friday & Saturday night or just
Saturday night.
The Polynesian water park resort in Wisconsin Dells, WI,
Make reservations at 1-800-272-5642 http://www.dellspolynesian.com/
Please make your reservations directly with the Polynesian and mention
the RTS Reunion to get the group rate.
Contact: Terri Hart-Ellis at [email protected] with questions
& upon making your reservation. You will be added to the reunion email
distribution list to receive important details as the date nears. Specific
counts for the number of adults and children attending will
be taken at that time.
RTS-OKI Meeting: Saturday, March 10, 2012
…of the Rubinstein-Tabyi Syndrome Family Support Group for Ohio,
Kentucky and Indiana (& nearby areas):
TIME: 11:30 am - 2:00 pm
LOCATION: 3430 Burnet Ave. Cincinnati, OH 45229, 5th Floor
RSVP: Amy Clawson, [email protected] or 513-636-4723
(Pizza & childcare provided with RSVP)
Everyone is welcome!
RTS-OKI Reunion
Northeast RTS Family Reunion
Date: June 15, 16, 17, 2012 Weekend
Location:
Cincinnati/NKY area
Contact: [email protected] or
513-636-4723
Stay tuned for more details!
We hope you can join us!
Date:
April 13, 2012 Weekend
Location:Hilton Garden Inn, White Marsh,
5015 Campbell Boulevard, Baltimore, MD 21236
Reservations: Telephone: 410.427.0600, Group Code: RTS, Group ID: # 306133
Contact: Brenda Bon Levine at [email protected] or 443.829.4507 OR
Amanda Novinski at [email protected] or 302.897.4858
THE GREAT AUSTRALIAN RTS GET TOGETHER 2012!
Date:
July 6, 7, 8th, 2012 Weekend
Location:Darlington Beach Resort Coffs Harbour NSW.
Reservations: 1-800-888-999 and use booking #118482
Contact: [email protected]
Join this fun family event spending time together, doing your own thing,
and a few surprises in between! For more information,
please visit: www.rubinstein-taybi.org.au
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Reasons to Share . . . RTS Resources
* NEW Support for RTS families in Spain and other Spanish-speaking communities!
A website: (www.rubinsteintaybi.es), a Facebook page (https://www.facebook.com/groups/176355225732361/),
a Google Group (Sindrome Rubinstein-Taybi) and an email list have been created for these families and friends who
wish to share experiences, concerns, frustrations and good news, ask questions, and share anything related to RTS. The
email list is similar to the listserv owned by Janet Estes, but for the Spanish-speaking community.
Contact: Cristina Fonseca, parent (Spain), email [email protected], or look up Síndrome Rubinstein-Taybi within
Google groups and send a request to join the group.
David Schor, MD, MPH
RTS Program Director
Division of Developmental & Behavioral Pediatrics
Cincinnati Children's Hospital Medical Center
MLC 4002, 3333 Burnet Ave.
Cincinnati, OH 45229
800-344-2462 ext. 0541
Email: [email protected]
*NEW Website: www.cincinnatichildrens.org/rts
Amy Clawson, Editor, RTS News
Division of Developmental & Behavioral Pediatrics
Cincinnati Children’s Hospital Medical Center
800-344-2462 ext. 4723, 513-636-4723
Email: [email protected]
Rubinstein Library
Division of Developmental & Behavioral Pediatrics
Cincinnati Children’s Hospital Medical Center
800-344-2462 ext. 4626, 513-636-4626
Email: [email protected]
RTS-OKI Family Support Group
Bill Mann, Parent Leader
513-708-5611 or Email: [email protected]
RTS Email ListServ
Janet Estes, ListServ Manager
250-753-7795 or Email: [email protected]
RTS Parent Group USA
Lorrie Baxter, Coordinator
P.O. Box 146
Smith Center, KS 66967
Toll Free: 888-447-2989
Email: [email protected]
Rubinstein-Taybi Syndrome Website:
www.rubinstein-taybi.org
Michelle Farrell, Director of Family Services
Special Friends Foundation
P.O. Box 313
Windham, NH 03087
Toll Free: 866
866-316-9029
Email: [email protected]
Website: www.specialfriends.org
2003 RTS Conference Procee
Proceedings Website
(aka “The Brown Book”)
www.rubinstein-taybisyndrome.info
www.rubinstein
Rubinstein
Rubinstein-Taybi
Syndrome: A Book for Families, 2007
(aka “the Blue Booklet”)
Cathy A. Stevens, MD
Dept. of Pediatrics, T. C. Thompson Children's Hospital
Dept
910 Blackford St.
Chattanooga, TN 37403
((423) 778-6112 or [email protected]
National Organization for Rare Disorders, Inc. (NORD)
55 Kenosia Avenue
P.O. Box 1968
Danbury, CT 06813
06813-1968
Website: www.rarediseases.org
The Arc
For People with Intellectual & Developmental Disabilities
1660 L Street, NW, Suite 301
Washington, DC 20036
(800) 433
433-5255 Website: www.thearc.org
Administration on Developmental Disabilities (ADD)
Office of the Commissioner
U.S. Department of Health and Human Services
370 L'Enfant Promenade, S.W.
Washington, D.C. 20447
Washin
Phone: 202.690.6590 Website:
www.acf.hhs.gov/programs/add
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