I’ve ranted and now it is time to get constructive. Instead of hand-wringing about all silos in the worlds of health, education and social services, I’d like to propose some simple solutions to actually do something about it. This is meant for professionals, people trying to help families and families themselves.
My first suggestion:
Connection with other families. If you know of families who have a new diagnosis, or who are new to an area, please find a way to connect us up with other families in our world.
Here’s a story: A lovely soul at my work introduced me via email with another mom who lives in our neighbourhood and who also has a child with a disability. We arranged a coffee date to meet at our local Starbucks.
I’ve been living here for two months, and I’ve had contact with many providers, professionals, specialists and coordinators. This mom shared more helpful and comprehensive information in the first few minutes of our conversation than I had acquired in many hours of reading websites, looking at pamphlets and calling/emailing/meeting with professionals.
Her son is seven years older than Aaron, but this didn’t matter. In fact, it was very useful to talk to another family member who was further down the road on their journey. Here’s what was astounding to me: it took us a full 15 minutes to realize our kids have a different diagnosis. When she mentioned the Canucks Autism Network, I’m like: Oh, they have programs for kids with Down syndrome, too? And she’s like: Oh, your son has Down syndrome? Mine has autism. And we laughed and marvelled that IT DOES NOT MATTER what our kids’ diagnoses are: our journeys are almost exactly the same. Do not think that you have to connect one family up with one diagnosis with another family with the same diagnosis. Our truths transcend diagnoses.
She gave me a carefully typed up sheet of contact information about who to call to set up services. It flew right over the health, education, social services and recreation silos. She told me the most helpful of all the agencies, and even called her contact there for me the next day to follow up on an email I sent about summer camps.
We chatted animatedly for an hour. She said: it will get better. In fact, I left that meeting feeling a whole lot better. I would figure this mess out because she had figured this mess out before me. I was feeling hopeful (she had shared how her son took the bus to work, and I loved that insight into the future). I could email her anytime if I got stuck. She was kind and generous. I was a complete stranger to her and she dedicated her afternoon to me. I didn’t have to have a doctor’s note proving my kid had a disability. I didn’t have to sit there for two hours convincing her I required support. I needed help and she helped me. That was enough.
That’s the power of families. Please please find opportunities to connect us families together. It can be difficult to find these connections ourselves. For instance, even though are other families with kids with support at school, I haven’t met even one of them yet – I’m not sure how to run up to a mom in the hallway at school and ask her: Hey, does your kid have a disability? #awkward
Us families support each other by sharing our lived experiences – this is something that health/education/other professionals – however well-meaning – can never do. Step #1 to tackling daunting silos? Connect us families up. Together, we are stronger.