Wouldn’t it be ideal if when your child receives a diagnosis of a neurological complexity, like ADHD, you were handed a map that detailed the road ahead of you? All you would have to do as an exhausted caregiver that had made it this far was choose which door to knock on first. Instead, when caregivers are told their child has a diagnosis they often feel alone, lost, and desperate for direction on what steps to take next. Being given a diagnosis is not even half the solution to what the problem has been for their child and the world of resources, advocacy, and intervention often seems out of reach.
At least that was my experience as a mom. When my child was given a diagnosis I knew I needed to take steps, but I didn’t know where or how to start. It was only through seeking the advice of other parents who had walked the path before me that I was able to piece a plan together and baby-step my way through finding the support we so desperately needed.
For many of us raising children with exceptionalities, like ADHD, there are years that feel like our families are being tossed around in an unforgiving storm. The journey to a diagnosis is often long, with appalling wait times for assessments and paediatrician appointments. Our children have struggled for years before they receive a diagnosis and we have struggled right alongside them. We’ve been in this blustery storm with our kids for a long time when we finally make it to the Pediatricians office and instead of being handed a solution, we’re often handed a blank to-do list. There is much to be done to help our children find their own unique versions of success, but first we must scrawl out that to-do list ourselves. It’s like bumping around in a dark room looking for the light switch. You know it’s there, but the only way to find it is to grope around the room feeling the roughness of the walls searching for the switch that is going to make all the difference.
Here's the thing: it is hard enough to do the things, without first having to find out what the things are that need to be done.
Recently I joined a brand-new Paediatric Clinic that aims to provide wrap-around, low-barrier services to families before, during, and after their referral to see a Paediatrician. Many families have children with complex and compounding diagnosis and every parent I spoke with had a similar story of exhaustion, grief, hopelessness, and fear. In my role as the Family Liaison, I was able to show them that I understood their experience, that everything they had experienced was normal and that they weren’t alone. Most importantly, I was able to point them in the direction of current education and resources that would suit their situations. They were able to begin mapping out their to-do list before they even saw the Paediatrician.
As the first year in my role as the Family Liaison at the CYAN Clinic neared its completion it became clearer that funding was becoming impossible to secure. There has been no public funding made available to run the clinic and both myself and Dr. Francis had been donating our time to keep the clinic open. As you may already be aware ADHD is virtually unfunded in the province of British Columbia. Although it is a neurodevelopmental disorder that impacts individuals across all social-emotional, physical, and academic domains, ADHD alone does not qualify our learners for extra funding or support at school under the current Ministry of Education guidelines. A diagnosis of ADHD will not qualify caregivers for any public funding sources for intervention tools, outside therapy, coaching, or support services. Desperate caregivers are paying out of pocket for services on top of taking time off work to attend meetings, appointments, and to frequently pick their child up from school when their child is expected to adapt to an environment that doesn’t work for them. The financial burden of raising a child with ADHD is reported to be 5 times higher than that of raising a neurotypical child , and yet there is no accessible funding for the most prevalent neurological condition in childhood. And as we at the CYAN Clinic have learned, there also appears to be no funding to keep accessible services open and available at no-cost to families. We must do better.
Multi-disciplinary paediatric teams that provide educational and emotional support services to families during the assessment and diagnosis process enable caregivers to create their own maps. Seeing a Paediatrician and receiving a diagnosis doesn’t mean the storm is over for families, but care from a Paediatric Clinic absolutely should be a lighthouse in that storm. Wrap around services that support caregivers at the time when their child receives a diagnosis enable caregivers to continue to be the lifeboat their children need while they ride the waves.