One of the joys of having a child with a rare genetic condition, (believe me there actually are quite a lot of them) is connecting with the other families who also walk the same path as you. These connections deepen over time and they become extended family members, many of whom you’ve never actually met beyond a video call.
Earlier this year one of our Inv dup del 8p family members Annette, after months of searching and failing, to find a a book to explain rare genetic conditions to her daughter Maya’s inclusion class, decided to write one herself.
The result is a book which is both catchy with its rhyming story and funny as it compares genetic disorders to pairs of socks. Not only does it explain in child friendly, yet still scientific terms what chromosome disorders are, it also promotes inclusion and acceptance from other children, and explains how children with a genetic condition may need a little extra help to play and get involved. It’s an important message delivered in a sweet and uplifting way.
The second half of the book is the same information, with graphics in adult friendly language so the whole family or indeed classroom can get all the information needed to understand.
Reading the book can help raise questions and open group discussions about what these conditions mean for each individual child or affected person, and also that really they’re no different to their neuro-typical peers they just wear socks of a different design. Wouldn’t the world be a boring place if we all wore the same socks?
The best bit is that it was also reviewed by Dr Volkan Okur, a geneticist from Columbia University in the USA meaning the information is also completely correct and scientifically accurate.
I’ll admit that I was a crying mess when I read the book and that was just after reading that it was dedicated to the 8p family. I have my copy and can’t wait to use it to explain chromosome disorders to my younger children. They are still a little young at the moment being 3 and 1 but I’m glad I now have this resource when the questions come.
This book should be available in all classrooms, libraries and youth groups whether they have someone in the class with a rare genetic diagnosis or not. You never know when you will have the pleasure of meeting someone with a rare genetic condition.
The book is available in both print and digital format on Amazon using this link
Chromosome Kids Like Me
(this is not an affiliate link I receive nothing for promoting this book other than the satisfaction that more people understand and are aware of rare genetic conditions.)