One of the best lines in this book was at the end, in the author’s notes. It reads “If you’ve met one child with autism, you’ve met one child with autism.” I honestly have never heard anyone say this before but I couldn’t agree with it more.
I have lost track on how many documented mutations there are for Rett Syndrome but one site refers to there being over 200. So that means there are over 200 mutation variations between 2 specific genes involved, the most common one being the MECP2 and the other one CDK1 (Reilly has a MECP2 mutuation). Furthermore, since the mutuation occurs on the X chromosone and girls have two X chromosones, you could have two girls with the exact same mutuation but present different symptoms of Rett Syndrome. For there is something else involved within our bodies that determine how much of the good X chromosone is going to be used versus the defective one. I am not a genetist and have no biology background but I am not sure how anyone can dispute that our girls with Rett Syndrome can be so different from one another and some of their nuances and not so subtle differences can not be ignored, especially in therapy and school settings.
This was reinforced not by socializing with another family with a daughter with Rett Syndrome but rather having another typical 6 year old stay with us for a few days at the cottage. London’s friend D comes from a good family, very similar on the academic front, and they get along really well, but they still have have huge differences when it comes to what they like to eat, what they prefer to watch on tv, how they handle change, etc. It has been one interesting exercise to say the least and let’s just say they are motivated by different things and we need to apply different strategies and techniques to change their behaviour if so desired. So why would anyone think it was okay to apply the same approach to girls with Rett Syndrome, just because they share the same label?
There is a review on the back of this book that compliments Lisa for essentially taking “complicated topics and making them accessible to readers through beautifully drawn characters and profound, human-scale stories” and although I totally agree the author has a gift for writing, I would be surprised if her narrative has any residual effect on her readers, especially those with no autism connection.
The more I think about it, I am not a fan at how she connects two characters through the story of an autistic boy. A story where one mother loses her autistic son at 8 years of age and then her marriage, and another mother who has three typical children whose husband becomes unfaithful, divorce is viable but then they end up working it out. Although this story appears to weave a beautiful tale and a feel good message at the end, I am dissapointed on a few different levels and almost let down by the author’s choices.