Something is wrong – a parent’s struggle to find the right information and steps to navigate our health system when their child may have ADHD, Autism or any mental health issue.
What followed was a makeshift plan of various doctors, suggestions and more calls from the school to pick our son up – he was struggling immensely with his emotions and behaviours believing he was a bad boy.
That Spring, he would see an occupational therapist (because I read some article that they could help with ADHD), but it wasn’t covered under my insurance plan (which is also a shocking discovery how little coverage you have, if you’re lucky enough to have an insurance plan, for a variety of services that could possibly help with self-regulation and other ADHD symptoms). Unfortunately, we could not explore further with an OT to see if this therapy would be helpful. In his first psychological assessment, it stated: “Reece was referred for a psychological assessment by his family doctor, due to serious concerns by his teachers and parents regarding his behaviour at school. The behaviours reported included “running out of the classroom and school, and reacting to ordinary classroom demands in an explosive and volatile manner.” This behaviour would continue into the next year, with me having to leave work multiple times in a week. Circling back with our family doctor, we would begin to try medication to help with symptoms – a process which can be one of trial and error, struggling to find the right one for your child. Our son was still in crisis. We, as a family, were in crisis trying to find the right information about what was best for him and how to support him with these big emotions and behaviours.
By grade one, I decided to find another psychologist to assess my son to see if we could find more understanding and ways to help him. So back on the waiting list we went, and in March 2018, we had another psychological assessment on the books. This assessment was fifteen pages long and seemed more geared towards how to best support him at school. Since the initial observation done by the school psychologist, I was left feeling “now what?”, after each small step.
After a yoga class one night, I was speaking with a woman who happened to be a Clinical Psychologist. She referred me to a Psychological Associate of hers who often assesses and counsels children. I reached out, waited a while and then Reece was assessed again. During one email exchange with this psychologist, he suggested that my son get tested for Central Auditory Processing Disorder as sometimes, he mentioned, children are misdiagnosed with ADHD when really they have CAP. What in the world is CAP? I was angry – why had this never been ruled out before? If there was a chance a child could be misdiagnosed with something, why wasn’t there a mandatory checklist to rule out other possibilities? Our son had already had two psychological assessments, an occupational therapy assessment and other medical opinions over the years and not one mentioned CAP. Needless to say, I followed his instructions and dove into the world of audiology. I was told, “CAP testing is usually only an option for children age 7 and older (due to the lack of normative data for younger children). The audiologist strongly suggested that I wait until he was at least seven years old to conduct the test and as the results would be more definitive. By the way – the cost of the test would be $550 and not covered by insurance. We proceeded with this third assessment for our son which uncovered a learning disability in working memory. I, for one, do not recall what this means even now when I read up on it to refresh my memory. If I have learned anything through this, in regards to how this affects our son, it is really hard to apply specific recommendations in our daily lives.
On a routine visit to our family doctor, she told us it might be beneficial for Reece to see a Pediatrician who knew more about ADHD. After 8 months, on yet another waiting list, we were referred to a Pediatrician that specializes in treating patients with mental health and neurodevelopmental disorders (including ADHD) – Dr. Van Stralen. Going on three years later with Dr. Van Stralen, it is still unbelievable to have stumbled upon a medical doctor that researches ADHD with the most up-to-date knowledge.
All this to say, we are now on a path of interlocking bricks as opposed to cobble stones – so the path is a little less bumpy, especially while wearing heels, juggling work, family and endless medical appointments to find out more – because there is always more to discover and we’ve only just begun.
But why is it such a struggle to get concrete guidance for an ADHD child? What if like many, a family doesn’t have coverage (and many do not)? What if the parent(s) weren’t working with excellent and dedicated educators? Or their child doesn’t have the best Kindergarten teachers with the biggest hearts who go above and beyond to bring to your attention that something is wrong with your child and the urgency to act now? What if a single parent’s child is suspected of having ADHD but doesn’t have a family doctor, or doesn’t work at a place of employment who understands urgent calls from her child’s school? What then?
Something is wrong…with our reactive health care system in this country. There is too little guidance for parents to support them in advocating for their children. Parents need clear guidance on what next steps should be taken. A diagnosis of ADHD needs more steps included than just a psychologist’s assessment to rule out any other possibilities or even uncovering something more.
There should be no stumbling on finding a path of treatment and what to do for your child when navigating our healthcare system when a child may have ADHD, or any mental health issue.
Yep, something is definitely wrong.