Centre Chat! INTRODUCING SYDNEY! Child Development Centre Newsletter

Centre Chat!
Child Development Centre Newsletter
June 2014
Hotel Dieu Hospital, 166 Brock Street, Kingston, Ontario K7L 5G2
www.kingstoncdc.ca
INTRODUCING SYDNEY!
Sydney Gillam is a twelve year old preteen in grade
seven. She has recently set up a cooking website:
Http://gillamsy.wix.com/snacks4teens with microwave recipes!
Sydney was recently interviewed by CDC in order to
share her story. Here is what she had to say:
Q. Tell us about some of your hobbies and what you
like to do in your spare time.
A. I like swimming. I have been swimming with Vicki Keith’s
Penguins for about 3 years. I also enjoy horse back riding
and I ride year round even in the winter. I have been rid
ing a horse named Harlem for the past year. And I love to
cook!
Q. What inspired you to set up a cooking website?
A. I first started doing microwave cooking with my occupational therapist at the CDC and started to collect microwave recipes. I also use technology a lot at school and
home so it seemed a fun thing to do.
Q. What is your favorite thing about cooking?
A. You get to explore different foods.
Q. Do you prefer making desserts, salads or main
meals?
A. Desserts!!!!
Q. Do you have a favorite recipe?
A. I love making waffles. They are easy to make and I got my
own waffle maker for Christmas this year.
Q. What are some of your biggest challenges in the
kitchen?
A. I can use a microwave, a waffle maker and could use a
crock pot but the oven and stove are really hard for me.
I use colour coded measuring cups and spoons to help me
with the measuring!
Q. If you could build your dream kitchen what is one
thing you would like to put in it?
A. My kitchen at home is set up pretty well for me but I
would like a lower stove so I could reach it safely.
Sydney would like to share one of her
favorite recipes:
5 Minute Cookie
1 Tablespoon Butter
1 Tablespoon white sugar
1 Tablespoon brown sugar
3 drops vanilla extract
1 egg yolk
¼ cup flour
2 Tablespoons chocolate chips
Melt butter in the microwave for 20
seconds at 50 power level.
Add white sugar and brown sugar
Add vanilla and stir.
Add egg yolk and stir
Add flour and stir
Add chocolate chips.
Scoop the dough onto parchment paper
on a plate and shape into a cookie.
Microwave for 50 seconds
Let Cool
Enjoy!
Letter from the Director
In February, Teresa Piruzza, Minister of Children and Youth
Services, announced a new Special Needs Strategy, and in April
I attended a webinar which provided more details. The Strategy's three components are early identification of children with
special needs, improved service coordination, and integrated
rehabilitation services for children from birth to school leaving.
We at CDC and the Ontario Association of Children's Rehabilitation Centres (OACRS), our provincial association, were
excited to hear about this and particularly to note that four
Ministries are working together on the strategy. These are all
areas which the special needs sector has been highlighting for
some time as needing attention.
Over the past month I have been busy doing presentations to
community planning tables, and speaking with community partners about how to move the Strategy forward. More exciting
news followed in May with the announcement of 5 million
dollars for Children's Treatment Centres. About five minutes
later (actually about 24 hours) the election was called, and the
Strategy is now officially on hold until after the election. However, I am continuing to reach out to community partners to
build momentum, regardless of who wins the election.
To be clear, neither CDC nor OACRS supports any particular
political party. We work hard to promote the interests of children and youth with special needs and their families with all of
the major political parties. OACRS key messages are the need
to reduce wait times and improve access to services for children
and youth with special needs, and supporting the integrated
delivery of school and community based rehabilitation for children and youth.
There are lots of ways you can get involved:
• Start a social media campaign
• Write a letter to candidates in your community
• Attend all-candidate meetings
• Go to community events like BBQs that your candidates are
hosting or will be present at
• Be prepared to question a candidate when she/he knocks on
your door
Tips - How to use the key messages with local candidates:
• Candidates may speak to you about their own party’s
priorities. It is important to listen but try to find a way to
segue back into the key messages that you would like to
share.
• When meeting with a candidate, introduce yourself and
explain your role as a family member.
• Speak from the heart and trust yourself in your knowledge
of the children’s services sector: how it impacts your
children locally and why the services are important. You
may want to prepare notes and a script but only use them
as a reference.
Meetings with local candidates are meant to be informal
conversations. Feel free to ask/answer questions and share
personal stories and anecdotes that help illustrate key messages.
• If you are asked a question and you don’t have an answer,
simply state that you aren’t sure and you will look into it
and will follow up with the candidate.
Here are some questions you might ask candidates:
•
1.
2.
3.
What will your party do to reduce wait times for children’s
specialized services and to establish a fair and sustainable
funding system?
This year, all children in Ontario will have access to full-day
kindergarten. Some students with special needs will require extra therapy supports in the classroom (distinct
from special education). What will your party do to
ensure that students with special needs have the services
they require for success in school?
As children with special needs become adults, their families
experience great uncertainty because many services available to children are no longer available as they enter adulthood. What will your party do to ensure that transitions to
adulthood are seamless to enable our sons and daughters to
live with as much independence as possible?
Margaret van Beers, Director
“System Navigator” - A First Point of
Contact at CDC.
The Child Development Centre is excited to announce that we
now have a System Navigator!
Our System Navigator works collaboratively with the Intake
Committee and the Leadership Team and is the first point of
contact to services for children and their parents (caregivers) at
the Child Development Centre. In consultation with the Intake
Committee and Leadership Team, the System Navigator will
receive and review referrals for services at the CDC and
determine what services the child will require. She will also
gather important information from parents, caregivers, community partners and physicians to determine other services and
community resources that may be accessed by the family. The
System Navigator can assist families with referrals and system
navigation to ensure an integrated approach to care.
If you have questions about services for your child please
contact Megan Davey - tel: 613-544-3400 ext. 2074
Page 2
CDC Grads & Clients Have Been Busy!
Heaven Smith—Author of “The Piano”
We at CDC are very proud of all
of our "grads" and happy to hear
from them as they launch their
adult lives. Nineteen year old
Heaven Smith, a CDC grad,
disability advocate and former
student of QECVI, recently
released her first book, a fictional
romance titled "The Piano". It
was written in August of 2011
when she was 17 and published
this past January, The Piano
follows the hearts of two people,
a pianist and a writer, through the
journey of life. This is a gripping,
unforgettable story of healing,
unwavering love and inescapable
fate. Gritty and hard-hitting, it is
nevertheless a story of resilience.
fondly recall". Heaven is thankful
for this experience, which was
part of her own healing of a
difficult childhood. She says,
"Everybody's always looking for a
reason to hope, a reason to
believe in themselves and in life
again”,
Friendship Skills Camp March 2014
And what a blast they had!
When asked what she wants
readers to take away from this
book, she answers; “You are
loveable, no matter how much
you think you're not. Healing is
possible, there is hope, and you
are truly not alone."
The book, published by Xlibris, is
available online at: Amazon.com,
Xlibris.com, BarnesandNoble.com in
While The Piano is fictional, it was three formats (soft cover, hardcover
inspired by circumstances in her
and e-book). Kingston, Ontario
own life and by "a true gentleresidents can also buy the book at the
man's existence " for which she
"Novel Idea" bookstore on 156
feels "blessed and fortunate to
Princess Street.
A Note From Phil (Hotwheelz) Cook!
I’m a graduate of C.D.C. I have Muscular Dystrophy (Duchenne). I say I
am on a Wheel-chair not in a Wheelchair. The chair don't own me, I
own the chair! A while back I wrote a
story about my idol, Aaron
(WHEELZ) Fotheringham. It was
called Life is what you make it, He
has inspired me so much that I even
got started on a little clothing line. I
had shirts, hats, stickers, and magnets
made. I had a dream to get a new chair
and it finally came true, with help from
family, friends, C.D.C., Medigas and
fundraising. My chair Is Toxic Green. I
also had a dream of meeting Aaron
(Wheelz) Fotheringham. I got to meet
him January 3rd in Hamilton. I went
to a Nitro Circus event and Aaron
snuck up behind me. I was so surprised I didn’t know what to say and
my mouth just dropped! I just want to
say dreams really do come true!
Thanks C.D.C. for the encouragement!
Page 3
What is Friendship
Skills Camp?
Friendship Skill Summer
Camp Information:
The deadline to register for the
For children with a diagnosis of
summer program is June 20th,
Asperger’s Syndrome or High
Space is limited and children who
Functioning Autism (6 and 7 year
have not had the opportunity to
olds).
attend the camp before will have
first priority and all applicants
It is structured group programming focusing on friendship skills will be screened to determine
suitability. There is no cost for
and self awareness through a
participation.
variety of activities including
group work, art, music/drama
Please call Lynne Patry
and games. The purpose of the
(Secretary) at 613-544-3400 ext.
program is to provide opportuni3191.
ties, practice friendship skills, to
Note: This camp is a social skills
teach children self-regulation,
program not a behavioural prohow to recognize emotions in
gram. If your child requires one to
others and how to respond or
deal with one’s own and others’ one support this program will not
emotions. This year’s March and be an appropriate fit.
Summer theme is ‘Angry Birds’.
Research Roundup
The therapists and physicians at CDC are dedicated to supporting ongoing research in various
fields related to child development and special needs. Here’s a summary of current projects
The Impact of Personal,
Interpersonal, and Environmental Factors on Changes
in Quality of Life for Youth
with Chronic Conditions
(The Quality of Life Study)
The Quality of Life Study is a 4 year project out
of University of Western Ontario in collaboration with Holland Bloorview Kids Rehabilitation
Hospital and Thames Valley Children’s Centre.
Its focus is investigating the life factors that impact the quality of life for children with chronic
medical and physical conditions. Parents and
children participate in an annual interview/
questionnaire to help children’s rehabilitation
centres adapt their services to better ensure
that youth are enjoying meaningful and satisfying
lives. The project has now entered its final year
and we are eagerly looking forward to sharing
the study findings! http://www.tvcc.on.ca/
An Evaluation of the Long-term
Effectiveness of Spasticity Interventions in Children with Cerebral Palsy (The CP Walk Study)
This 3 year study out of Holland Bloorview Kids
Rehab looks at the long-term effectiveness of
spasticity interventions on gross motor function
in young ambulatory children with spastic cerebral palsy, as well as the impact on community
mobility and participation in recreational activities. This project is now in its final stages.
Integration of Epigenetic, Metabolomic and Metagenomic
Profiles of Autistic
Children (IEMMPAC)
This upcoming study is designed to determine if
there are differences between children with
autism and their siblings in terms of the quantity
and types of certain substances (for example,
proteins) in their blood, urine and stool. If we
find such differences and these differences are
also found by other researchers, it may make it
easier, in future, to diagnose autism and/or to
develop special diets that may reduce the symptoms of autism.
Maternal Infant
Care Study
(MICare Study)
The purpose of this study is to get a better understanding of how different care
practices and risks affect long-term outcomes of preterm babies and how sharing
this knowledge can improve the quality of
care in neonatal intensive care units.
Working with the Canadian Institute of
Health, the Special Infant Clinic at CDC
has been recruiting premature babies
(born before 29 weeks gestation) into the
study for the past 3 years. Cognitive,
language and motor skills are assessed
and information regarding family background and medical history is collected.
Monitoring Development of Children with
Cerebral Palsy or Gross
Motor Delay (On Track)
This study aims to help therapists better
support children with cerebral palsy and
gross motor delay by taking a closer look
at various patterns of development of
balance, range of motion, muscle
strength, endurance, as well as self-care
and participation in recreational activities.
Participating families are followed 2 times
over a one-year period for the study.
You may be invited to participate if your
child meets all of the inclusion criteria for
the study. If you’d like more information
or to inquire about eligibility, please contact Nicole Murphy at 613-544-3400
x3111.
Childhood Cerebral Palsy
Integrated Neuroscience
Discovery Network
(CP-NET)
This multi-faceted project is lead by Holland
Bloorview Kids Rehab in conjunction with
the Ontario Brain Institute. The study involves building an Ontario CP Registry and
began in 2012 with a focus on Hemiplegia.
This year marks the initial stages of recruitment of all children with cerebral palsy born
after December 31, 2008. The project involves examining risk factors for CP, early
brain imaging, functional skills and includes an
examination of DNA to help better understand the causes of CP. The project involves
2 assessment visits, one now and one at age
7. You may be invited to participate if your
child meets all of the inclusion criteria for
the study. If you’d like more information or
to inquire about eligibility, please contact
Nicole Murphy at 613-544-3400 x3111.
Canadian Neuromuscular Disease
Registry (CNDR)
The CNDR is a Canada-wide registry of
people diagnosed with a neuromuscular disease. It collects important medical information from patients across the country to
improve the understanding of neurodevelopmental diseases and to help speed up the
development of new therapies. This ongoing
project is recruiting participants at the Child
Development Centre, at KGH, and at St.
Mary’s of the Lake. You may be invited to
participate if your child meets all of the inclusion criteria for the study. If you’d like more
information or to inquire about eligibility,
please contact Nicole Murphy at 613-5443400 x3111.
CDC is committed to ongoing research and education. Participation in projects like these assists
in developing new therapies and treatment strategies, supporting ongoing medical research, assisting with centre programming options and may
impact funding of equipment and treatment.
CDC would like to thank all of the families who have participated in
ongoing research !
Page 4
Hold the Date!
Saturday, September
13, 2014
at Lake Ontario Park
CDC is celebrating 40
years of service — more
details to follow in our
next newsletter!
Welcome
Students!
CDC welcomes Occupational Therapy students and
Physiotherapy students on a regular basis. We are
committed to education and welcome their enthusiasm
and dedication.
We could not have done
If you want to join our
it without you! Thank you planning committee for
to everyone!
the 2015 Run, or volunteer please contact
The dollars continue to
Marianne McLure, 613pour in and more recently
544-3400 ext. 2164.
we thank RegiopolisNotre Dame High School
and Archbishop O’Sullivan
Public School for their
donations.
This spring CDC hosted two students from the new
Communication Disorders Assistant program at St.
Lawrence College.
Jessica and Andrea brought lots of creativity to the
Augmentative Communication Service and assisted in
running a March Break communication blitz with many
of our clients.
We look forward to continuing this relationship with St.
Lawrence College in the future!