October 2019    


Welcome to an early October edition of  CanChild Today! In this issue, we are excited to feature resources, share photos, and  highlight publications by some of our  CanChild  members !
 
2019 marks the 30th anniversary of CanChild -  use the hashtag  #CanChild30  on social media and celebrate with us!

Please feel free to share CanChild resources & newsletter with family, friends and colleagues. 
They can subscribe to the  CanChild Today! Newsletter for free by registering   here .  
Our past issues are archived on the CanChild website and can be accessed here.
CanChild in California!


CanChild is very thankful for the opportunity for some of our members to attend and participate in this year's Combined 73rd AACPDM (American Academy of Cerebral Palsy and Developmental Medicine) Annual and 2nd IAACD (International Alliance of Academies of Childhood Disability) Triannual Meeting. This meeting was held from September 18-21st, 2019 in Anaheim, California, and was filled with researchers, students, staff, young adults, and parents from around the globe with a strong interest in developmental disability research! 

The theme chosen for this conference was "Knowledge Without Borders," with the International Classification of Functioning, Disability and Health (ICF) being used as the theoretical framework. The overall purpose of this meeting was to bring together functional-based perspectives, and acknowledge the important role that environmental factors play when discussing functioning in childhood-onset disabilities globally.


Congratulations!
 

 
C ongratulations to  Dr. Jan Willem Gorter, on behalf on
CanChild, for receiving the American Academy for Cerebral Palsy and Developmental Medicine ( AACPDM) Fred P Sage Award for the creation of the GMFCS video. This video is posted on the CanChild  website.
 

Special thanks to  Marilyn Wright, physical therapist at Ron Joyce Children's Health Centre / McMaster Children's Hospital for helping create the video, as well as the children and families who participated in this project. 
 
New Video!  


Communication for All
Communication for All
Continue celebrating #WorldCPDay by having a look at our newest video about communication in non-verbal people with CP. Musa, Hunter, Marshall, and their families show how technology enables them to play, communicate, learn, work, and have fun. We are so proud and thankful for their hard work and dedication to this project! 

The video also shows the instrument we're working on here at CanChild: the C-BiLLT. This is an accessible test to assess someone's language comprehension skills. Originally developed in the Netherlands, we are adapting it for Canadian kids with motor and speech impairments. 

CP-NET Science & Family Day!  
 
A warm thank you to everyone who attended CP-NET's 6th Annual Science & Family Day at the Abilities Centre in Whitby, Ontario. We had an amazing turnout of families, scientists, and community partners coming together to engage and learn more about the advancements of CP research, as well as to celebrate World CP Day. 

A special thanks to the Ontario Brain Institute and Grandview Children's Centre for making this event possible and for their on-going support, the planning committee, our wonderful presenters, and to the CanChild staff who helped make this event a success!

More photos will be avaliable on CP-NET so make sure to check back soon!


Participate in Research!
 
Parenting is a tough task! Parenting a child whose development might be complicated by a
disability can be even harder. We know that parents want to do a good job with their kids.
We also know that there can be a lot of extra stress and strain on parents as they work to do
all the right things when their child has a disability.

We wish to engage with parents raising children with developmental challenges. We want
to find out if our planned series of five weekly online interactive workshops, called
ENVISAGE: ENabling VISion And Growing Expectations, improves parents' mental well-being
and helps them feel more confident, competent and empowered.

We would love to know what you think!
If you are a parent or caregiver based in CANADA or AUSTRALIA and would like to learn more
about the study, please contact:

Debbie Hughes
Research Assistant
CanChild and McMaster University
Ontario, Canada
Email: envisage@fhsadmin.csu.mcmaster.ca
Professor Peter Rosenbaum
CanChild and McMaster University
Ontario, Canada
Email: rosenbau@mcmaster.ca
Tel: 905-525-9140, ext 27834

Recent Publications by CanChild Members!
When therapy-related expectations by parents are not clearly communicated to service providers in pediatric rehabilitation, it can create barriers within family-centred care, and may affect the flexibility and reflexive delivery of that service. The purpose of this study was to deliver a holistic description of parents' therapy related expectations in terms of its nature, formation and impact. 20 parents of children (6 years or younger) who have a developmental disability or delay and using therapy services in Ontario, Canada participated in this study, and their ideas were used to help identify patterns and generate themes regarding the concept of 'expectations' in family-centred care.  Authors:  Phoenix M , Smart E, King G . Phys Occup Ther Pediatr .  2019 Sep 18. doi:  10.1080/01942638.2019.1665155

With the growing emphasis on family-centred care, more autism service providers globally are involving parents and caregivers in the planning and delivery of intervention and services for their children or youth with autism. This article examines results from a large qualitative study looking at how parents come to understand that their child has autism starting from the beginning of initial developmental concerns. Specifically, this article shows findings that demonstrate how parents become motivated and engaged in caring for their children at early stages. Data was collected from 45 interviews with 32 mothers and 9 expert professionals from urban and rural regions of Ontario, Canada. Authors: Gentles SJ, Nicholas DB, Jack SM, McKibbon KA, Szatmari P. Autism. 2019 Sep 11. doi:  10.1177/1362361319874647

The purpose of this study was to explore both the experiences of parents and children using the WWW-roadmap and differences between parents who had and had not used the WWW-roadmap to prepare for consultation with their rehabilitation physician. The WWW-roadmap is a tool that can be used to support parents whether it be exploring needs in paediatric rehabilitation care, finding information, or asking questions to professionals. 128 parents in total participated in this study, with 54 parents having used the WWW-roadmap prior to consultation and 74 who received care-as-usual. Authors: Alsem MW, Verhoef M, Braakman J, van Meeteren KM, Siebes RC, Jongmans MJ, Visser-Meily JMA, Ketelaar M. Child Care Health Dev. 2019 May 23. doi: 10.1111/cch.12700 

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