Do children with disabilities and their families know they have rights? Does Canada respect their rights? In Giving a Voice to Children’s Rights,a blog posting on March 31, 2017, Dr. Keiko Shikako Thomas laid out these intersecting issues arising in childhood disability and human rights in a Canadian context.
A few days later, Shikako-Thomas, co-lead of the Network's KT Core policy engagement project and other members of a Canadian delegation of civil society organizations (CSOs) appeared before the United Nations committee overseeing the Convention on the Rights of Persons with Disabilities. Dr. Shikako-Thomas presented on the status of children with disabilities and responded to detailed questions as part of a compliance review in Geneva April 2-4. Canada became a 2010 signatory to the convention, and both the federal government and relevant NGOs participated in the review process.
Alexandra Foster sits alongside her son blowing bubbles, watching them drift across his bedroom. “Bubble!” enthuses three-year-old Hayden, making the sound of an ‘L’ for the first time in his life.
“Just hearing him say that word was such a happy moment for me,” says Foster. Last year, Hayden was diagnosed with autism. Up until then, he had been effectively non-verbal, meaning the few words he could say, Hayden used out of context.
The recent identification of new genetic variants associated with autism brings to the forefront important considerations when using genetics as a tool for detection of this complex disorder.
“Whole genome sequencing resource identifies 18 new candidate genes for autism spectrum disorder”—which was funded by Kids Brain Health Network and published in Nature Neuroscience—is the largest whole genome study of autism to date. The findings have implications for children and families as they represent another step towards the development of a genetic diagnostic for ASD.
Dr. Joanne Weinberg is a 2017 recipient of the Starfish Award acknowledging the great impact of her research on the lives of individuals with FASD.
Conferring of the Starfish Award is a traditional high point at the close of the International Conference on Fetal Alcohol Spectrum Disorders, which meets every two years in Vancouver B.C. This year was the seventh biennial gathering, and drew, as in past years, more than 700 participants, including representatives of provincial governments and the justice system, researchers, health and mental health professionals, and families and individuals with FASD.