Jessica was born in July 2009, and has Rett Syndrome. She lives with her parents and younger sister in London, UK. This blog is intended to keep family and friends updated on Jessica’s progress, to document how having a child with a profound disability affects our family life, and to keep me sane! If you are reading this, and something strikes a chord with you, or you just want to say hello, please comment so I know I am not talking to myself!
Sometimes, well quite regularly actually, Jessica tells/reminds me
that inside, underneath all the Rett-ness, she is just your average 3 year
If Jessica wants to request something; a book, a toy, a
drink etc, she will look at what she wants (we are trying to get her to then look
back at an adult to make it more obvious, although she doesn’t always do this)
or she will reach out with her hand and touch what she wants.
I don't like saying "no" to Jessica when she has asked for something, given the effort it will have taken her to be understood, and I obviously want to encourage her to initiate communication. However, sometimes circumstances and time constraints mean I have to. Consequently, I can find myself saying things like “No Jessica,
you can’t watch television, you need to get ready for nursery” or “No Jessica,
you can’t play with your toy at the moment, you need to eat your breakfast”.
And then I catch myself. These are normal interactions between parents and their children. There must be
thousands of parents saying those exact lines every morning!
More recently, Jessica was getting really upset at breakfast
time, and I couldn’t work out why. Eventually I realised that it was because we
were giving Jessica’s little sister Cheerios as finger food as well as her
porridge, but we were just giving Jessica her porridge. I was worried that
Jessica was upset that she can’t feed herself, but no. As long as I put some
Cheerios in her porridge, she is happy. She just didn’t want to be missing out!
Every morning Jessica will choose what top she wants to wear
from a choice of 2 or 3. However, I can normally predict which one she will
pick. It will invariably be the one that is the most pink, or the most girly, or the most sparkly one
on offer! Whilst shopping the other day, I let Jessica choose her new shoes –
they were all of the same style but in different designs. These are the shoes
that she chose:
She is just a typical 3 year old girl inside. We just need
to find more ways to allow her to communicate it.