“I’ve never quite known how to explain what our daily life is like. I wanted to write how it is in order to give others a greater understanding of disability and caring. And to be totally honest, I wanted to write something that would make people consider being Louis’s friend. So here is me introducing you: Louis, this is your story. Readers, this is my son.”
Alison White’s memoir of bringing up her son Louis covers the first 18 years of his life. It’s written to him, even though he doesn’t have the capacity to understand his mother’s writing.
From the beginning Alison White is brutally honest. When she first sees her son in the intensive care baby unit, she thinks, “I would not have chosen you.”
The name Louis means ‘fighter’, according to the baby names book Alison and her partner Greg used. It proves to be prophetic. His first Christmas present is to be able to come off oxygen and to bond with his mother for the first time.
The things people say
One of the things that I found most shocking about the book is the callousness or perhaps carelessness of people’s reactions to a mother with a disabled child:
- The woman from the parents group talking about how ‘perfect’ her own child is.
- The nurse who calls Alison ‘Ermintrude’ when she brings her expressed milk to the intensive care baby unit.
- “Look at him. That’s an apology, that is!” says another nurse.
- From Louis’s own grandmother: “There’s something not quite right about him. He’s not like any baby I’ve come across before.”
- The homeopath who attributes Louis’s cerebral palsy to his father not being present at the birth.
- The shoe shop worker who says that it is not her company’s policy to sell shoes to people who cannot walk in them!
Celebrate every step
Scope used to have a child development tool called Celebrate Every Step. This was a way of marking the tiny developmental milestones that were missed by mainstream ways of assessing child development.
After so many battles, Alison begins to see the way forward:
“All those things that we take for granted like being able to walk, play, write, get dressed, wipe our bums, brush our teeth, tie our shoelaces, chew our food, blow our nose, lick our lips. You still can’t do any of these things. We help you to do everything and little by little, at a pace that is imperceptible, we make progress with some things. Other things will never come. The damage is done.”
Alison finds a music therapist from Nordoff Robbins who unlocks Louis’s love of music. Louis can sing his own name before he can say it. As Louis begins to express himself, his personality and his obsessions come to the fore. He likes to carry maps with him wherever he goes. His bedtime routine consists of his mother having to pretend to go for a bike ride before he can settle.
Presents of life
Louis’s birthday wishes become more and more eccentric: for his 10th birthday he asked for a Henry Hoover; for his next he wants an escalator! One Christmas he asked for a Soundbeam, an inclusive musical technology system used in sensory rooms which costs thousands of pounds. When his mother tries to explain that this is impossible, his response, which could almost be the motto of this book, is: “You could try.” Alison does try. She contacts Soundbeam who offer to lend a system over the Christmas holiday so Louis does get his wish: he gets a Soundbeam for Christmas!
For his 18th birthday, Louis and his mum get an unwanted present: no more respite.
“As you turn at 18, as we were told, are respite has been cut to nothing, gone. Yesterday you were a child and today you are an adult and everything will change with social services again but nothing has changed with you. You still need all of your care, but nobody seems to be able to tell us anything. We are not going to worry. We are having a party and your parties are known as the best.”
Letter to Louis by Alison White is published by Faber on 2 February 2018.
Win a copy of the book!
We have 10 copies to give away. To be in the draw, post the things people say to parents of disabled children on our online community.
Terms and conditions
Only one entry per person will be counted. The prize draw closes on 10 February 2018 at 10am. The winners will be chosen at random after this date and notified via social media. Books can only be posted to addresses in the UK and no cash equivalent or alternative prizes will be offered. This prize draw is not associated with Facebook or Twitter.