Entry Thirteen- “The Outliers”

An outlier is defined as a person or thing that differs from other members of a group. I have been curious to examine this in relation to Oscar. With any diagnosis there is a spectrum of predicted outcomes; the people who do well and the people who don’t do as well. In the case of Oscar’s diagnosis, nobody seems to know why that is. There are some children who seem to only have minimal symptoms and others who experience all of the possible symptoms quite severely. Why? I want to know what causes this range in outcomes. I want to know this so that I can exploit the things that make certain people do better in order to maximize my son’s potential.

1P36 deletion syndrome means that a portion of the first chromosome is missing. To me, it would make sense to think that the larger the missing portion is, the more effected the child is….. but as far as I know, this doesn’t seem to be the case. There are children with very large deletions that seem to do well. My son’s other diagnosis is polymicrogyria (multiple, small folds in the brain) and again, they are unable to correlate the size of the abnormality with how well the child does. So what is it? If genetics or anatomy can’t explain it, what is making the difference? It leads me to believe that there are other factors contributing to why some children do better.

I have been listening to the audiobook “The Outliers” (which I do recommend). I think that I initially picked up this book to hear stories of success and how people became successful, hoping that it would give me some inspiration for Oscar. The book discusses various successful people across various professional fields and explains how it was possible for that particular person to become successful, how they became an outlier.

After receiving our “Good News” (see Entry Twelve) I have been starting to think that it is possible for Oscar to be an outlier. For him to defy the restrictions of his diagnosis. But I need more information. My objective since learning his diagnosis on January 8, 2019 has been to maximize his abilities. I don’t know what is possible for him, but nobody does for that matter.

I want to share things that I think have helped Oscar’s development so far. The first thing I want to discuss is where we live and why this matters. We live in Canada. I truly think that this has made an enormous impact on Oscar’s development. Why? I took 18months of paid maternity leave with my son. Our government recognizes how important it is that a parent is home with their child. We were so busy with Oscar (and I know that every family is who is raising a special needs child) and I recognize how fortunate we are to have been able to prioritize Oscar’s health and therapies without worrying about work.

Secondly, we live in a small town 2 hours north of Toronto, Canada. Toronto happens to be home to one of the best children’s hospitals in the entire world, The Hospital for Sick Children. If a miracle can happen, I believe that it can happen there. Not only is Oscar a patient at one of the best hospitals in the entire world, but it is also free for us to access it. This means that I am not spending countless hours on the phone with insurance companies fighting to get bills paid, or worrying how much a test or treatment is going to cost, or wanting to leave the hospital a day early for fear I can’t pay the bill. I know that these are worries shared by many. I have many worries, but one of the worries I don’t have is how will I be able to pay for this?

I am not meaning for this to come across as a political post. I am just stating things that I believe have helped my son and my family over the last 17months. My plan is to make this topic a bit of a series within my blog so that I can focus on each “category” of development. I am always very interested in any comments but especially for this series. I want to learn what things you have found worked for your child so that I can try them with Oscar. My hope with this series is to create a space where we can share knowledge. So please share!!