In 1992 my oldest son was finally diagnosed with ADHD at the age of fourteen. I say finally because it took five professionals over three and a half years and a great deal of persistence on my part to figure out what the issue was. The delay resulted in unnecessary confusion, frustration and fear as well as unjust labelling and consequences for our children, and a great deal of unnecessary upheaval and heartache for the entire family.
Over those three and a half years I received so much conflicting information from “experts” my head was spinning. One said he had ADHD, the next one said he did not. Most jumped to the conclusion that it was our fault as parents because he was not acting out at school, instead expressing his frustration at home. I was even told by a physician at a prominent ADHD hospital clinic, that our son could not have ADHD because he was a proficient reader. It was also suggested that I was just an over-involved mother and outright told by family that I was not strict enough and just needed to apply the belt more.
You see the difficulty was that my son was not failing at school. He was getting good grades, yet his frustration and anger were growing day by day. It took a full psychoeducational assessment to discover that his giftedness was compensating for his ADHD while his ADHD obscured his giftedness so educators were unaware of both. As explained by his psychologist, our unique child was perceptive enough to know that unleashing his frustration at school had huge costs, but just like a volcano, the pressure had to be let off somewhere, so home seemed the safer alternative.
Having worked as an RN in psychiatry I immediately started reading everything I could get my hands on once we had a confirmed diagnosis. At the time most material on ADHD was meant for medical professionals. Luckily my medical background in psychiatry allowed me to understand these books but they left me feeling depressed and without much hope. It started me wondering what other parents did. I turned to public health and any other health resource agencies that might have resources or supports but soon became frustrated as I found little help. I kept reading and searching for information but found little.
Three months later my mom called to tell me that she had seen a brief mention in our local paper about a meeting for parents of children with ADHD at our local hospital. I attended what I found out was their very first meeting, met the four mom’s who had organized the meeting and immediately asked how I could help. I had found out the hard way that there was nothing else out there to help parents going through this rough journey. But I knew how helpful these groups could be from my experience starting a local new mothers mental well being after my second child was born. Over the next decade this group gave me the support and understanding I needed and led me to a life long purpose and passion.
Over the next two years my other two sons were also diagnosed with ADHD and giftedness but one with some learning disabilities and one with anxiety. It also became very obvious that their father, my husband, had ADHD too.
The next struggle became the schools. My youngest needed support which was not very forthcoming and my middle son was being very badly bullied. It was again reinforced that mostly only those with familial experience seemed to understand. It took almost two years and a teacher with her own son with ADHD to finally alleviate some of the bullying. The school was never able to effectively deal with it. It became clear over the next few years that most educators did not understand my kids, nor did the education system as a whole. I discovered that in Ontario the Ministry of Education did not recognize ADHD as a risk to learning, so little additional support was available.
We also spent the next decade trying everything suggested by medical “experts”, medication, diets, neurofeedback, and specialized behaviour management. General parenting classes just made things worse. Medication and specialized behaviour management helped but after years with no diagnoses it took time.
I was very fortunate that my circumstances allowed me to jointly and then individually run that local ADHD parent support group, the ADRN, Attention Deficit Resource Network, for the first eleven years after we received our diagnoses. The ADRN was one of two groups in Southern Ontario specifically geared to supporting parents of children with ADHD, the other being CHADD Toronto. A few other support groups were scattered across Canada, but very little networking was occurring.
Along with monthly support meetings, in 2001 the ADRN started to run larger evening educational sessions for parents in partnership with Dr. Atilla Turgay and the Scarborough Hospital ADHD Clinic in Ontario. We even organized the first full day educational workshop for educators on ADHD in Ontario. The ADRN became a source of support for families impacted by ADHD as well as a valuable source of ADHD education.
Then in 2003 CHADD who had become ADD Ontario (ADDO) and a charity came to speak with me. They were disbanding leaving the ADRN the only support group in Ontario. They asked if I would take their place and be the voice of parents at an Ontario teleconference on ADHD. During this conference I felt personally challenged when asked why no national ADHD organization existed in Canada. At that time there was no group nationally expressing the voice of individuals and families affected by ADHD, networking small support groups, doing ADHD awareness work or advocating to governments for ADHD resources.
By then I had realized I was not someone inclined to accept the status quo so what came next just seemed the next logical step. I arranged to meet with a small group of like-minded individuals to begin the process of developing a national ADHD organization. CADDAC, the Centre for ADHD Advocacy Canada was formed. We eventually changed the name to The Centre for ADHD Awareness Canada.
During the next two years I was fortunate to first become Dr. Umesh Jain’s research co-ordinator and then the Executive Director of CADDRA, the Canadian ADHD Resource Alliance, which at that time was an independent, not-for-profit organization of expert ADHD physicians. Their support in my working life allowed me to continue my volunteer work building CADDAC. The experience gave me access to leading ADHD clinicians and researchers in Canada and internationally along with exposure to the latest ADHD research. An opportunity for which I will always be grateful.