When you have a child with additional needs, whatever condition they may have, whatever those needs might be, it soaks up a hell of a lot of your time and energy.
And that means there’s not as much of you to go around as a parent – both mentally and physically.
I’ve been thinking about this a lot recently because it’s hit me just how much Mini-me is having to cope with at just six. Sometimes this makes me sad, but mostly it just makes me really proud.
Mini-me is a chatterbox, a little diva, a performer who loves dancing around the lounge to Justin Timberlake or copying the moves on Strictly on a Saturday night. She mostly seems carefree and happy, as she absolutely should at her age – but the truth is that she copes with much more on a daily basis than many children will ever have to.
She’s loved Blue-eyed boy with a fierce protective streak since the days when she used to pat my pregnant belly. I remember the delight in her eyes when she came home from my parents’ house to find the new playmate she’d longed for had finally arrived.
Since those early days of being parents to two gorgeous children we’ve watched an unbreakable bond develop between them. They play together, squabble together, chuckle together and hold hands in the back of the car every single day.
Their personalities both completely contrast but also complement each other, and Mini-me has undoubtedly helped Blue-eyed boy more than she will ever know with his confidence, his happy character and his love of life and people that isn’t always a given when it comes to the A Word.
Mini-me is years away from being able to walk to school by herself, yet she knows and understand the word autism. She knows it means that her little brother finds it hard to speak, gets overloaded with noises, colours and people sometimes, is still in some ways more like a baby than a three year old and that he might not be able to access all of the wonderful opportunities that lie ahead of her.
If you ask her she’ll explain all this to you, not in these exact words obviously, but her compassion for and acceptance of this life-long condition that now affects all of us is truly amazing.
She also loses out because of the A Word. She doesn’t always get the best of us because Blue-eyed boy sometimes needs more time and attention, she often gets told: “In a minute…”, because we’re doing some task for her little brother and she hardly ever complains.
She is desperate for Blue-eyed boy to go to her school with her, to have her official school picture taken with her brother like many of her friends have in the past few weeks, and the plain truth is that might never happen.
In many ways having a sibling with complex needs will make life more tricky for Mini-me, but I know she’ll also gain a lot from it too. She already has compassion, kindness and understanding beyond her years, and hopefully that will aid her in her life ahead.
In the meantime we’ll just be grateful for what a remarkable little human she is growing into – and get up to dance with her to Justin for the tenth time that day, even if we don’t feel like it. After all she’s earned it.