You know how it is when you become friends with the characters in a book? When they have made their way into your heart and mind and you look forward to your time with them every day and you sadly see the remaining pages of their story growing slimmer and wish it weren’t so?
That is how I felt with reading Life with a Superhero: Raising Michael Who Has Down Syndrome
I loved the whole cast, especially Michael and his author mother, Kathryn.
When I was first approached by the publisher of Life with a Superhero with the request to review it, I was hesitant. I didn’t think I would like it because of the title – having “Superhero” in it rang to me of a dip into Inspiration Porn. I thought it would be about the child being lifted up to superhero status by mere virtue of the fact that he has an intellectual disability.
I was wrong.
Life With a Superhero
“Superhero” is in the title because the child was obsessed with superheros – Superman in particular – for a very long time. It was more of a nod to who Michael really is, what he likes, than to anything else. I do think the title is unfortunate though, because it will turn some people off from even trying to read it, and that would be a pity.
This book is wonderful.
It is exquisitely written, crafted with care. It is a lovely story of a warm, funny, rambunctious family that lives in a marvelously human way. They are not perfect and it is actually in their mistakes and imperfections that I felt most drawn to them. I would like to be invited over for dinner sometime – they seem like the kind of people who laugh a lot and enjoy life in between the harder moments.
Most books of raising children with Down syndrome stop when the child is still a child, but not this one. Life with a Superhero ends when Michael is in his 20’s, living with his girlfriend. Kathryn (Michael’s mother) takes us clear through his early years, covering therapies, his bolting, IEP’s and more before hitting puberty and all the fun that entails.
It is also unusual in that Kathryn really gets it, she really understands disability and every aspect of respecting people with Down syndrome.
I loved her open and accepting attitude regarding sex and masturbation, I thoroughly appreciated how she did not try to infantize her son and his partner. I also appreciated the way that she talked about some of the later challenges like helping Michael understand money and debit cards, his job search, and the intricacies of marriage and cohabitation for Michael and his partner.
This was their story, the story of raising Michael, and she stopped telling the story when she felt that she was infringing on his privacy.
I enjoyed this book completely. From start to stop, I laughed, smiled and shed the occasional tear. I felt comfortable with this family and comforted that there are families out there like them. I sincerely hope that this book takes off within the Down syndrome community in particular and with the greater community at large – it is worth it.
Meriah is the deaf, single mom of 3 kids (one gifted 2E, one with Down syndrome). A longtime career counselor, teacher and disability advocate, she loves helping to create community and empower parents, people with disabilities (and of course, parents with disabilities).