ADHD Symposium Part 1 – Review and Reactions

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Today at the Caboto Club in Windsor there was an event that could have helped many many parents, though not all of those who could have been helped attended.

Moderated by Dr Sharon Burey, the event boasted a well rounded panel of experts and representatives from service organizations in and around Windsor and Essex County. I was heartened to see how very many resources we have available to us in this region, but felt compelled to wonder why I had not been made aware of these resources before today. Regardless, they are here and available for use, and that is a VERY GOOD THING.

The keynote address on ADHD and Substance Use Disorder was given by Dr. Sam Chang who boasts an impressive CV that I could not possibly replicate here. It included fellowships with a number of high profile organizations and an impressive helping of alphabet soup in terms of the credentials that he cites after his name. His specialization is in ADHD adolescents who also have fallen into patterns of substance use that have become harmful to their everyday lives.

The talk was incredibly informative about the possible outcomes for young people who have been diagnosed with the various subtypes of ADHD (including, but not limited to, inattentive type, hyperactive/impulsive type and classic). He shared many beautiful graphs and diagrams to reinforce his message.

His message was this – children who have been diagnosed with ADHD are at risk for developing Substance Use Disorder as they move into their adolescent years and beyond.

Choosing to treat ADHD in childhood with medication has a strong influence over whether or not they will develop these habits.

Research, as it was presented today, strongly indicates that treating ADHD with medication significantly reduces the likelihood that they will experiment with illicit drugs and alcohol in an attempt to self medicate, and cope with their symptoms. In other words, research has shown over and over again that medication truly helps to set them up for success.

It is important to note that medication for ADHD, while being a strong protective factor against substance use, is less effective when it is the sole treatment that is used. The protective factor increases when pills are paired with therapy and strong, informed, directed parenting.

This talk was followed by a question period that just about broke my heart.

You see, one of my biggest struggles as a parent of a child with ADHD is feeling like I am all alone. It is terrifying to feel as though you are a failure and that there is no one out there willing or able to help you succeed at the most important job you will ever have in your life; parenthood. Parenthood is hard to begin with, add a diagnosis of any kind and you ratchet up the pressure. What I heard from the adults, most of them parents, gathered in the room was that they were struggling. Confused, under informed, under supported and charged with the care of a vulnerable population, they were floundering. As usual, there were more anguished questions than there were solid, usable answers.

I left this experience today armed with new information, and strongly feeling as though the choices that I have made for my son up to this point have been the best ones that I could have made. I left confident that I am doing the right thing, at least so far. That, however, is not the only impression that I left that conference hall with today.

There is tons of research out there, and more being done every day into the causes of ADHD, the effectiveness of the medications, and how to make them more effective, possible outcomes for children with this diagnosis based on myriad factors. There are professionals and academics and clinicians working to broaden the research and deepen our understanding of this growing population of young people and adults. In my mind this is wonderful, and necessary if we are to make any strides in preparing our children to be productive and contributing members of society, to say nothing of happy, healthy and fulfilled people in their own lives and pursuits. However, there is one HUGE piece that I see is missing.

Parent support.

We are the feet on the ground, the front line of defense these children have against all the scary and heartbreaking outcomes that they could possibly face. Where are the support groups? Where is the counseling? Where is the therapy and skills training for the parents of this population? It exists, but not nearly enough of it. It is difficult to find, and because there is not enough, it is likely not accessible to all those who could stand to benefit from it. As parents we cannot effectively support these kids if we do not have effective supports ourselves. The sad truth is that most of us feel lost, alone and without the tools or skills that we need to be the parents that we need to be. How can I help my child to succeed if I feel like a failure more often than not? How can I encourage and model good self esteem and coping practices if I do not have any myself?

It was at the same time heartening and heart breaking to hear the fear and stories of lone struggle over and over during the question period. It helps to know that I am not alone, but I cannot escape the thought that something needs to change.

Our doctors are jaded and serve a population too big for their empathy to be enough. They are exhausted and overextended in their practices and simply cannot care enough to do the good that needs to be done. Our professionals are over worked and under budgeted to adequately support all those who need it. Our system is over burdened and inefficient. When your choices for the coveted “psycho educational evaluation” are to be put on a waiting list three years long before an IEP (Individual Education Plan) can be written while your child continues to fall behind in social skills, academic achievement and self confidence, or pay $2000-3000 for it to be done privately as soon as possible it seems to me that the most important factor in this equation is being neglected and ignored. That factor is our families and our children.

It is time we came together as parents. We can support each other through sharing our stories, sharing our struggles and learning from each other. It is enough to know that we are not alone. All else can grow from there.

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