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.
How a Few Minutes of Your Time Can Help Effect Change!
A personal ask from Heidi Bernhardt, the President of CADDAC
A personal ask from Patrick McKenna, actor, director and comedian
View Celebrity ADHD videos rolled out during October, ADHD Awareness Month
Club ADHD is a CADDAC resource for adults impacted by ADHD, a place where adults with ADHD can talk about their experiences and ADHD issues. Club ADHD has three components
A Facebook Discussion Group
A biweekly Podcast
A Twitter account
For questions and comments contact, contact@clubadhd.ca
In November of 2017, CADDAC initiated a survey on ADHD and the Canadian Education System to better understand the education resources for children with ADHD across the country. Results
On April 18th BC PharmaCare announced that it was expanding its existing coverage of medications for the treatment of Attention Deficit Hyperactivity Disorder (ADHD) in the paediatric population only. Three long acting ADHD medications (Adderall XR, Vyvanse and Strattera) will be added under the Special Authority (SA) program. CADDRA and CADDAC along with BC medical practitioners welcome these expanded medication options for children. However, British Columbia continues to lag significantly behind other provinces by denying coverage to individuals over 19, thereby discriminating against adults with ADHD.
Read More on our Blog
May 2, 2017 Media Releases
A new Huffington Post article is talking about changes coming to the BC Special Education Guidelines that will allow students with ADHD, who present learning needs, to be identified under the learning disability (LD) category. This may not seem like a huge change, but parents of children with ADHD in BC and CADDAC have long been advocating for this change. In fact, CADDAC has been advocating for this change to occur in Ontario since our inception in 2005. For more information on why this is important and what is happening in Ontario please acess out Blog Post.
If your child with ADHD is struggling at school and continues to be denied an IEP or recognition as an exceptional student in the Ontario School System and you would like to share your story with us to further advocacy efforts in Ontario, please contact heidi.bernhardt@caddac.ca
Access the Huffington Post article HERE
On Thursday March the 16th at 8pm, CBC’s The Nature of Things will debut a documentary on Adult ADHD. The documentary “ADHD: Not Just for Kids” features adults sharing their storey of a lifelong struggle with ADHD symptoms and how they felt after receiving a diagnosis. ADHD medical experts and researchers discuss many aspects of adult ADHD; that in most cases symptoms are not outgrown, that it continues to go undiagnosed, that it is over-represented in the prison population and still often missed in girls. New research and the impact of ADHD on families and society at large will also be covered.
For more information access CBC Documentary
On April 18th BC PharmaCare announced that it was expanding its existing coverage of medications for the treatment of Attention Deficit Hyperactivity Disorder (ADHD) in the paediatric population only. Three long acting ADHD medications (Adderall XR, Vyvanse and Strattera) will be added under the Special Authority (SA) program. CADDRA and CADDAC along with BC medical practitioners welcome these expanded medication options for children. However, British Columbia continues to lag significantly behind other provinces by denying coverage to individuals over 19, thereby discriminating against adults with ADHD.
Read More on our Blog
May 2, 2017 Media Release
A new Huffington Post article is talking about changes coming to the BC Special Education Guidelines that will allow students with ADHD, who present learning needs, to be identified under the learning disability (LD) category. This may not seem like a huge change, but parents of children with ADHD in BC and CADDAC have long been advocating for this change. In fact, CADDAC has been advocating for this change to occur in Ontario since our inception in 2005. For more information on why this is important and what is happening in Ontario please acess out Blog Post.
If your child with ADHD is struggling at school and continues to be denied an IEP or recognition as an exceptional student in the Ontario School System and you would like to share your story with us to further advocacy efforts in Ontario, please contact heidi.bernhardt@caddac.ca
Access the Huffington Post article HERE
This past week, a follow-up letter was received from Marion Law, the Director General of Health Canada’s Therapeutic Products Directorate (TPD) addressing discussions during the Oct 31 meeting with Janssen, CADDAC and ADHD medical experts.
The letter noted that:
CADDAC will continue to communicate with Health Canada, monitor the situation and report back to our stakeholders.
