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!