By Dr. Yona Lunsky, Director of the Azrieli Adult Neurodevelopemental Centre
Yesterday was Bell Let’s Talk day, and I wanted to take some time to promote discussion on mental health and developmental disabilities. In prior years, I have focused on getting staff in the sector to talk about this, and creating a space for people with developmental disabilities (DDs) themselves to join in the conversation.
It just so happens, that today, the day after Bell Let’s Talk, is Young Carers’ Awareness Day #YCAD which includes brothers and sisters of children and youth with disabilities, and this year’s theme for the day is mental health. It seems fitting, therefore, to use today to talk about sibling mental health. Last night I participated in a Fireside Chat with Helen Ries, a sister who I deeply respect from the Sibling Collaborative, to do just that.
The first question Helen asked me was: Whose mental health are we talking about? If we asked brothers and sisters whose mental health we should talk about, they would prioritize their sibling with a developmental disability, and then their parents. Indeed, our first national report on the topic based on almost 400 siblings highlighted that these were their top concerns. Their own mental health was also a concern, but definitely lower on their priority list. Sound familiar caregivers?
Navigating our mental health system when you have a developmental disability is extremely complicated. Brothers and sisters like me watch this happen to our loved ones with a developmental disability, and we also see the toll it takes on our parents. We need answers on how to handle this better, how to help them. But we also need some support to help ourselves. So, in answer to the question of whose mental health are we talking about, I think we need to talk about all of us.
Talking is good but it is not good enough. We need information about how to recognize mental health issues emerging for our siblings. We need to know what questions to ask, and where to go for help. We need skills on system navigation, and on being a good observer and historian, especially if our brother or sister has a hard time verbalizing how they are feeling. These details can help mental health care providers to make the correct diagnosis and can also help to monitor if treatments are working or not. Nigget Saleem, a sister and a pharmacist from the UK, used her sister skills and her clinical expertise to help her brother when his medication regimen was not right. We have to be prepared that this is a role we may one day have, so we can feel confident and do a good job when that time comes, and not be taken by surprise.
We need strength to support our parents if they are struggling emotionally, guidance to work with differing opinions of what to do within the family, and we need help for ourselves to manage stressful times in our families.
When I was a young carer, there was no name for who I was or what I did, and there were no organizations or resources for that matter that were targeted toward siblings like myself. I am so excited to see this changing, and am proud that the Azrieli Adult Neurodevelopmental Disabilities Centre at CAMH has partnered with The Sibling Collaborative to study the adult sibling experience and build more mental health resources to help siblings here in Ontario and nationally.
Brothers and sisters, we know our siblings better than anyone. We are creative and observant, and we are in it for the long haul. Let’s talk about mental health together in our families, and support each other too. And let’s keep the conversation going after today, and after tomorrow as well.
In case you missed the chat last night, you can go to the Sibling Collaborative website to learn more. If you are a brother or sister you can also join the Sibling Collaborative facebook group. And if you are looking for mental health resources, you can check out our CAMH Family Guide and other resources.
You can also listen to a podcast on mental health with Sibling Collaborative member Eric Goll and myself.