Like most parents of Autistic children, I field a lot of the “What is it like?” question.
It’s a particularly obnoxious one since, up until Charlie was born, I didn’t know any other type of parenting. And, even now, the only thing I really know is what it is like to parent my own children. There isn’t really a universal parenting experience- no more for parents of Autistic children than for parents neurotypical ones.
But, I suppose, there are some things about our lives that do distinguish parenting a child with disabilities from the experience of those that don’t. There are some things that we encounter that most of my friends will never quite have to worry about, consider, or mitigate.
Consider, for a moment, that you are house shopping and you come upon a Magic Genie realtor. He tells you that he can give you your perfect home. It will be exactly the right lay out, exactly the right size, exactly the right location, and in a completely affordable price point…Perfect in every way and exactly the home you have always dreamt of owning.
Sounds like a pretty good deal, right?
But of course, as is often the case with genies (and with realtors), there’s a catch: Your walls can never be painted. They must always be the colour that they are now.
Now, the rookie shopper will tell you: No problem! I can work with whatever.
And they’d be right. You can make just about any colour work in most spaces, particularly when you can control things like lighting and decorations.
But a more seasoned shopper knows that the colour of the walls is actually kind of a big deal. Not a deal break- again, this is the perfect house- but a big deal, nonetheless.
On top of that, Magic Genie tells you that you don’t get to know the colour of the walls before moving in. And once you are there, you can never move away.
If you can’t agree to these terms, you must walk away from the home completely.
It’s the perfect home, and you are committed to the long-term picture, so you agree.
And in your mind, you start to ask yourself: What will my walls look like?
You think to yourself: Maybe you’ve lucked out and they will be white! White, while not exactly an exciting colour, does kind of go with every thing. There’s an awful lot you can do with white.
In your mind, you start to decorate your white walls.
And you feel secure in knowing that you can work with what you will be given.
But, life isn’t always that easy.
See, there’s the catch: No one gets white.
Every single magic house has a colour of its own, and white is not among them.
Some houses have very pale blue walls. Others have pale sage walls. Others still are pale taupe.
Some are bolder: a vibrant green, a cool lilac, or a serene gray.
Each of these walls has its own personality, and its own flavour. And, despite your best hopes, they will not match perfectly the white décor you had envisoned in your dreams.
But, for the most part, the colour is flexible. After all, there are a wide variety of different colour schemes that work with a butter yellow wall. While you do need to put in a bit of thought and work with the hue that you have been given, you can walk into most department stores and rest assured that you will find a wealth of different options to accessorize and decorate your space.
Now, imagine that your house has a bright red focus wall.
Like it’s more muted and uniformed counterparts, this red wall is beautiful. But it is also extremely powerful. It is extremely present. It is dominant.
And it doesn’t necessary work with as wide a variety of colour schemes.
You will need to think more intensely about how to decorate your space. You will need to consider the particular decorating needs that accompany a strong focus wall.
Red requires a different amount of mental work to coordinate. It also requires a different amount of mental processing to become accustomed to. It may not be as easy for every one to adapt to a red wall. For some, it may be really jarring and they may try to find ways to minimize the impact of the wall. However, as we all know, a focus wall is called a focus wall for a reason: it’s the focus. Most efforts to minimize the impact will be in vain, and it is generally best to let the wall dictate the tone of the space.
You will want to pick your décor carefully. It will take time to plan out how to best use the space. You may need to seek out specialized shops to find the perfect picture frames and furniture.
But you will find them. But it takes more time, more energy, more thought, and- often- more investment to get the room exactly the way you want it. But you will get there.
Some of us however, whether through fate or fortune, walk into our new houses surprised to find them painted in extremely unconventional colours.
Lime Green. Aquamarine. Bright Orange. Fluorescent Pink.
And that’s a whole other ball game.
They don’t make a lot of home decorating catalogues dedicated to teaching you how to work with fluorescent pink walls.
Decorating a fluorescent pink space is a challenge like none you’ve ever undertaken in the history of your decorating life. And, at first, you have no idea what you are going to do.
Some people grieve. How could they have agreed to this? They didn’t know! They were fooled! They were lied to! This is not the deal that they accepted.
(And they would be wrong. This is exactly the deal that they accepted.)
These people will spend the rest of their lives trying to figure out how to get out of their contract and either paint their walls or move away.
Others will dedicate themselves to finding ways to work around the pink walls that they find so offensive. They will hang curtains to cover them. They will use blue lighting to try to conceal the colour. But, at the end of the day, the walls are still fluorescent pink, regardless of what they do.
(These people will often wind up frustrated and will never gain a true appreciation for their home or comfort their space.)
Others still will embrace the intensity of the wall colour. They will learn to love fluorescent pink and will spend the rest of their lives working towards trying to perfect that space and find all the accountrements that will enhance the wall’s natural beauty. They become artists, and learn that the pink walls are an opportunity to turn their lives into living canvases.
Is it more expensive? Yes.
Is it more expensive? Yes.
Is it more time consuming to decorate? Yes.
Can it be frustrating sometimes, particularly in the beginning when you don’t have an understanding of how to work with the colour? Yes.
Can the intensity of the colour be difficult to manage sometimes and require more energy from you? Definitely, yes.
But…there is a richness and uniqueness and power that emanates from a pink wall.
And the intensity is exactly what makes it so beautiful.
Your home, while unconventional, becomes a life long labour of love, teaching you to open up your eyes to all the colours of the rainbow.
Longwinded as it may be, this is the best analogy I can think of to describe the experience of parenting my children.
When I was pregnant, I naively thought that my child would be like a blank white canvas that I could do with as I pleased.
Of course, no child is a blank canvas. They are all bright and colourful personalities of their own, and while you can impact them, you can not change who they are.
Some of their colours are more typical of what we would expect in children. They fit into the moulds we have create more easily and blend successfully with the world around them.
My daughter, Charlie, is not one of those children. Like a bright vividly-coloured focus wall, she is an insatiable force of life that dominates almost every space she enters. Her incredible thirst for knowledge and for interaction is unlike any toddler I have ever met, and she is already one of the strongest people I know.
To parent Charlie is to embrace the richness and boldness of her personality and to build up a world around her that plays to her strengths. It requires a lot of thought and planning, and ultimately, she and I are discovering that her atypicality may not always fit the mould. She is unlike her peers, but she is unlike them in a way that is generally easily accepted- and even admired- by the world. She ‘breaks’ the social mould, but in ways that are deemed socially acceptable.
To parent Sam is to walk into a proudly fluorescent pink house. There is nothing conventional about him, and his beauty isn’t always understood by others. He doesn’t break the moulds- he is apart from them, functioning independently from almost all social expectations.
The difference in time, effort, cost and intensity of parenting Sam in a way that is respectful of his pronounced differences can not be denied. It is not always easy to build up a world around him that compliments and enhances who he is.
And, as amazing as he is, I am always aware that he will never be considered to ‘fit’ the definition of what we consider a typical person to be.
There are people who spend their lives telling me that I must learn to do everything in my power change him, to cover up his differences and try my best to change his colour into one that is deemed more palatable.
But the thing is that I love his colour. I never expected to have an Autistic child, but I have fallen in love with the complexity, the vividness, the unabashed uniqueness of him.
And, like Charlie, while he doesn’t necessarily fit the mould, I am learning to live in a house that is multi-coloured and multi-faceted. I am learning to take the time to really think of who they are, as individuals, in every decision that I make. I am learning that, while the journey is different for both of them, it is phenomenal one well worth the undertaking.
I love my brightly coloured walls. I love that they are outside of the norm. I love that they have made me rethink everything I thought I knew about the world.
I love living inside a rainbow. That is what parenting my children is like.
They are more glorious than anything I could ever have imagined on a blank canvas.
And that’s what it’s like to parent my atypical children.