Still Transitioning...

This testimonial was originally published in the National Hospice and Palliative Care Organization’s ChiPPS pediatric e-journal #54

By JoAnne Mosel, CHILD-BRIGHT Patient-Partner, and Richard’s mom


The transition of a child with a brain-based developmental disability from the pediatric to the adult care system is an issue of large concern today in Canada, and many parents like myself, who have been through this step, continue to face challenges despite our child now being an adult.

My name is JoAnne and my son Richard is now 31 years old. He has a rare disorder called Duplication 15q (Isodicentric 15q) Syndrome which manifests in autistic traits, sleep disorder, pervasive developmental disorder (PDD) and epilepsy, among others.

The Start of Transition

When my son entered his teens, I began to grow more aware that we would need to prepare for his adult years. School had been our main service provider and we knew he would soon age out. The school took over responsibility for many therapies that he needed such as speech therapy, occupational therapy and physical therapy. During his teens, he even received applied behavioural analysis therapy, which is usually reserved for children under the age of 5 with autism. This was provided on a one-on-one basis and his therapist was an excellent match for his personality. He made good progress, from which he benefits still to this day.

But other services and professionals were growing more elusive.

His neurology team had taken a back seat since an EEG revealed atypical spikes but no clear reason to medicate him or follow up regularly.

His pediatrician only saw him for emergencies such as earaches or other such issues.

And although behavioural specialists and psychiatrists were still in the picture, as the years went by, therapists fell to the wayside. It became more and more difficult to access services. Budgets were being cut and getting an appointment with a social worker or coordinator took months.

Where to Start?

As I prepared for his transition, I wondered where to turn. Was transition a subject to be broached with the education system or the social services system? In our case, we wanted to pursue two options in particular: access to a rehabilitation day centre or a specialized education adult centre. When he was about 14 or 15 years old, I began to ask questions about these options and was told we’d have to wait.

In our case the age of 18 would be pivotal for the medical side whereas 21 would be the age-out for educational purposes.

At the age of 21, he started going to a rehabilitation centre where he was doing productive activities, but over time, these were abolished. And contrary to the name, no rehabilitation services were included.

Transition Happens Everywhere


One thing I learned by watching Richard grow from a teenager to an adult is that transition is about more than medical care and services… it’s about supporting the entire child. In 2012, Dr. Peter Rosenbaum and Dr. Jan Willem Gorter, Co-Founder and Director of CanChild respectively, published a paper titled “The F-words’ in Childhood Disability” that introduced 6 words that the authors believed should be the focus of childhood disability: Function, Family, Fitness, Fun, Friends, and Future. These resonated with me, and I’d like to share the impact of transition on these 6 crucial fronts for Richard:

FUN – My son used to enjoy going to concerts and shows. Music is his one great love and when he was young, going to children’s shows was fun, inexpensive and very doable despite always struggling with crowded open spaces. The noise, movement and unpredictability caused him distress and affected his behaviour.

As he grew older, kids’ shows were no longer an appropriate venue and he became more and more difficult to manage in public due to his growing strength and the impact of his seizures and medication (effective or otherwise).

Music class seemed like a good option and we found one geared to individuals with disabilities, but he was asked to withdraw after 3 weeks. They judged him to be too able. Most of the participants were in wheelchairs and they said he was too mobile and disturbed them.

We tried other activities but as he grew older, those also became problematic. He couldn’t keep up in Boy Scouts; his skiing instructor found him too big and heavy to pick up or guide down the hill, etc.

He was losing access to the activities he most enjoyed.


FITNESS – While my son was in school, he had access to the school gym. This gave him an outlet for his pent-up energy and he enjoyed shooting baskets. The gym also had climbing equipment, bean bags to throw, and the staff ran exercises to promote hand-eye coordination.

Once out of school, the burden was on me and my family to find activities that would keep him strong and healthy. Most organized activities offered by the community became competitive, and these did not suit him. During his teens, he participated in track and field in the Special Olympics but after a few years of this, it became less and less worth going. There was too much waiting in line for him. The large environment was overwhelming with its high ceilings and echoes. His sensitivity to noise also resulted in worse behaviour rather than better.

He now goes to the pool at our local Y to swim.

FAMILY – As my son grew older and stronger, his behaviour became more unpredictable making family get-togethers with my small extended family more difficult. He started to exhibit more signs of aggression and violence. He had difficulty tolerating the noise and couldn’t handle many people speaking at the same time. He made his displeasure known. His siblings tolerated his breaking their belongings but made sure to let him know, in no uncertain terms, they were not happy. Richard also increasingly wanted their attention; wanting to sing together, read together, go for walks.

His younger siblings did their best to dedicate this time to him—they would sing and read to him—but as siblings do, they also often picked on each other.


FRIENDS – Like many kids with his type of disabilities, my son’s friends are few and far between. While he was integrated in a regular school and class (with an aide), a few children took an interest in him. They would volunteer to help, say, bring him to the school gym or to another activity. They would throw around a ball with him in the schoolyard.

But once out of an integrated setting, there were no friends to speak of. He lacks the independence or skills needed to be in groups of verbal individuals, or to participate in their activities. His interests lie in one-on-one socializing. Back and forth verbal interaction is not possible in groups of non-verbal individuals with whom he is placed.

FUNCTION – In transition, much emphasis is placed on developing activities of daily living. For some reason, academic skills are left behind. I don’t understand why this is so often the case. I believe it is a misunderstanding and dogma surrounding the ability to learn once one is outside of school age.

Collecting bottles and returning them in the bottle return machine at the grocery store is an activity that has taught him concepts more concretely than a classroom setting could provide. The voucher emitted from the machine meant it was time to go shopping and he could purchase what he wanted. This was a critical milestone. It meant gaining a bit of control over his life.

Like most of us, he went through a period of having a strong need for control over his life. I feel this need cannot be overstated. It occurs perhaps at a time when even more control is being exerted by outside forces. Parents, teachers, time schedules... all infringing on his need to want to sleep in, eat when he felt like eating, do what he wanted to do. When trying to structure his time became too exhausting, we’d let him go on YouTube to watch videos. He was initially unable to navigate using a mouse, but quickly became extremely adept at it. I noticed, after watching what he was doing for a while, that he was capable of much more than I’d realized.

Which leads me to the final word: FUTURE


At this point, there is no plan in place; we are still searching for ways to best support Richard as a now 31-year-old adult. There are no interesting goals laid out, only vague words such as ‘increasing independence’ or ‘functional skills’. But as long as he is medically stable (seizures under control, side effects of the meds minimized, etc.) I’m hoping he will be offered many learning opportunities, socially, functionally and academically.

On my end, I am doing what I can to help improve the system for children like him in the future. I am now a patient-partner on a research project called READYorNot, funded by the CHILD-BRIGHT Network and co-led by Dr. Gorter (one of the authors of the F-Word article that I referenced above) as well as Dr. Ariane Marelli and Dr. Khush Amaria. In this project, we are developing and evaluating e-health aids to help patients and families take charge of this transition. The project is supported by Canada’s Strategy for Patient-Oriented Research (SPOR) initiative, which endorses the active partnership of patients, researchers, health professionals and decision-makers in research to build a sustainable and accessible health care system that optimizes the health of all Canadian citizens, including my son. By sharing my story here, and my experience within the READYorNot team, I hope to help make the lives of children like my son better in the future.


My family’s adventure to the United Nations to share our view on rights-based approaches to disability in Canada

By Susan Cosgrove

When my son Liam was three years old he couldn’t carry a conversation, exist in a crowd without getting overwhelmed, or interact with new people without panic. So much of my time and energy was consumed with accepting the things he could not do that I just couldn’t imagine that we would welcome his 15th birthday together, celebrating the biggest accomplishment of his life.

Attending the Civil Society Forum

Attending the Civil Society Forum

The United Nations Convention of the Rights of Persons with Disability (CRPD) is an international law that protects and promotes the rights of people with disability; made up of global guiding principles to ensure that people with disability can access the same rights and opportunities as their fellow citizens. One hundred and seventy-seven (177) countries have agreed to the convention – and Canada is one of them.

Two weeks ago, the 11th annual Conference of the States Parties to the Convention on the Rights of Persons with Disabilities took place at the United Nations Headquarters in New York City. Attended by both National governments and civil society organizations from around the globe, the goal of the event was to share knowledge about how people with disability are living with their rights in participating countries.

This brings us to my proudest experience as Liam’s mom. Over the past decade Liam has learned how to use his unique skills and interests to become an ambassador for children with disabilities. He has shared his thoughts with doctors, families, health care administrators, donors and policy makers in Toronto. When we were invited to participate together on a panel in New York City discussing rights-based approaches to disability in Canada, we did a happy little dance together.

Liam with Kirsty Duncan, Minister of Science and Minister of Sport and Persons with Disabilities

Liam with Kirsty Duncan, Minister of Science and Minister of Sport and Persons with Disabilities

As a team, Liam and I have a lot of experience to draw on. I have been engaged in research for years as an advisor, co-investigator and spokesperson. I recently began working for the CHILD-BRIGHT Network as their first Parent Mentor. As I begin this role I am focused on learning from the parents involved in the network about how they have engaged in the different projects and programs, and about their hopes for the future of research. I plan to build on these learnings to help connect and inform parents. And it is through this role that I had the opportunity to join the group attending this important landmark event.

Liam has come into his own thanks, in part, to the research world. He began as an enthusiastic participant who loved the activities and personalities of the researchers and health care providers he interacted with. We quickly discovered that he was a skilled ambassador who uses his unique charms to share his thoughts with policy makers and politicians. The opportunity to do so on such a grand scale – at the United Nations – was Liam’s dream come true.

For such a young person, Liam didn’t take the opportunity to influence global leaders lightly. He was there to show them what was possible for a young person when his rights were respected and enforced and to share his hopes for his adult life. He talked about his rights as a Canadian youth with disability and his hopes for the future. He dreams of one day being a mechanic, with a family and a home. He knows that he will require more assistance and support than his non-disabled peers for his entire life. He is willing to put in that extra effort and plans on using his future voting rights to encourage governments to match his efforts with their support. That was his message, that was his voice.

Liam takes Manhattan

Liam takes Manhattan

By being engaged in research in so many capacities over the years, I have learned a lot about the power of lived experiences. It’s as important to bring first-hand perspectives to every aspect of health care and policy development, as it is to bring them to research. Our personal stories keep goals in perspective and remind those in positions of influence why their decisions matter. It’s imperative for both families and professionals to understand the power of engagement. In the past, disability research and policy relied heavily on numbers, trends, reports and data, but lacked the human influence of those living with disability. But now people with disability and their families are becoming an essential part of the team and having direct influence on their own futures. And this is what we felt by being in this global forum. We joined other people with disabilities from all corners of the world: families, youth, adults, side by side with government officials and UN members to share our perspectives and discuss what we think and know is important.

Families may read this and think “Well, I’ve never been invited to the UN and I don’t like public speaking – so this isn’t something I can do.” But influence happens on many levels and from all types of people. It can be as simple as being informed and exercising your right to vote for a government that promotes the well-being of people of all abilities. It could be sharing information with other parents, your child’s school or people in your neighbourhood about the existence of the Convention of the Rights of Persons with Disability (CRPD). In reality, by raising children with disability who are informed of their rights and how to advocate for themselves, we are taking the first steps towards creating a more inclusive future for them.

Rachel Martens’ presentation

Rachel Martens’ presentation

At the UN we were part of a delegation that included scientists and policy makers, Liam and me, another youth delegate and another parent. Rachel Martens is a mom from Alberta who is raising a 12-year-old son with multiple disabilities. She works with the Kids Brain Health Network as a Parent Engagement Facilitator for the online group “Parents Partnering in Research”. In her writing on our experience Rachel asks an important question that relates back to a policy brief compiled by two of our team members: “What if the CRPD was the start to the conversation to ensure that Canadian children living with a disability get the best start in life?" 

Such was a question posed by Dr. Keiko Shikako-Thomas and Dr. Jonathan Lai in the research brief and research presentation they gave during the Canadian event at the UN conference. The event brought together a partnership between two pan-Canadian networks focused on brain-based disabilities: CHILD-BRIGHT Network and the Kids Brain Health Network to facilitate the opportunity to share this research work and more importantly: to bring the voices of parents and youth into this arena. I am thankful for having been provided an opportunity to be a part of the delegation that went to share what we are learning through research on the rights of children with disabilities, and through our everyday lived experiences in Canada. The Canadian event was hosted in partnership with the Government of Canada through the Canadian Minister of Disability and Sports and Science, and I was privileged to be able to share a glimpse into what life is like parenting my son with multiple disabilities and what I felt about his rights as a Canadian citizen.

Our Team (from left to right: Rachel Martens, Nikolas Harris, Kirsty Duncan, Keiko Shikako-Thomas, Susan Cosgrove, Liam Cosgrove, Jonathan Lai)

Our Team (from left to right: Rachel Martens, Nikolas Harris, Kirsty Duncan, Keiko Shikako-Thomas, Susan Cosgrove, Liam Cosgrove, Jonathan Lai)

I was grateful to get to know and work with Rachel. Her son’s challenges are so different from Liam’s, yet we found we shared a sense of sisterhood – an almost automatic understanding of the unique challenges that come with raising special families – no matter how they present. This comes to show the power of connecting with others, sharing experiences, and learning from each other – a lesson I wish to share with other parents in my Parent Mentor role at CHILD-BRIGHT. While we were there, Liam naturally turned to her as another mom figure and sought her out when he felt unsure. This is a tiny example of the power of unity in our special community. I felt comfortable sharing with her the intimate details of Liam’s care and she felt comfortable stepping in as needed. Through our relationships with other families living with disability we create a stronger whole, a louder voice. When parents like Rachel and me have the opportunity to speak for our community, we can feel the power of Canadian families and are humbled to be their representatives. I want to finish with a thank you to those families:

To all those parents – just like me – up at 4am and then spending the day wondering if the school will call, I am so grateful to you for all that you do and your infinite strength. Together we will change our city, our country, and our world!

To learn more about getting involved at CHILD-BRIGHT, visit our Get Involved section.