I happen to be a mom who believes it is important to talk to your child about his/her disability very early. I think it’s important for them to understand why life is “hard” and why they’re “different” and what to call what they’re experiencing.
And I think the earlier, the better. I think earlier is better because if you wait until your child is older, then you are faced with a sit down and spill the beans conversation. You have to have The Talk. Your child has a time when he/she remembers finding out the news and facts of his/her disability.
If you tell all and tell it early, then there is never a time your child didn’t know. It is very natural, it is not shocking, it is not surprising, it is not confusing … it is just something that has always been and something that he/she has always known about.
I think I walked into this whole disability discussion thing and lucked out, actually.
You see, I didn’t research disability before I was thrust into it. But I did research adoption before I was thrust into it.
I read books and articles about adoption. Some of those articles and books addressed the issue of telling your chid he/she is adopted. I read and agreed with the articles explaining that it makes more sense and is less harmful and confusing for the child if you talk about it very early so that it is something they have always known. You talk about your child being adopted even before the child understands what adoption is… before they even know that it takes a mama and a daddy … before the words even mean anything to them. If you tell their adoption story from the time they are very young, then they will always know it, and there isn’t a need to have a sit down and spill the beans conversation.
Granted, a wise parent will give details and use words that are appropriate for the child’s age and maturity. For example, I didn’t tell Zach details about the trauma of his birth nor his birth mother’s poor choices during pregnancy until he was old enough to hear that part of the story. But from a very early age, he knew he was adopted. And usually before he could completely understand the meaning and implication of his birth details, I would begin to talk about those details so that when he was old enough to understand it, it wasn’t the shock that it would have been otherwise….
So that was my approach to talking about adoption. And I applied the same process and theory to talking to my children about their disabilities. They’ve always known about their disabilities. They’ve always known that they have to work harder than most people to accomplish things and to reach milestones. They always have had the words to answer questions when they’re asked why they do things differently. And it’s worked for us.
I’m always shocked when I hear about kids or even adults with disabilities who don’t know they even have a disability. I know people just do things different ways, and it’s certainly the right of a parent to choose when to talk to their child about their disability. But it seems so much easier to have that conversation nonchalantly and casually and a little at a time over the course of time. And it truly seems like a disservice to not inform the child about their disability label.
But that’s just me.
I recently read an article written by an adult with autism about the importance of parents talking to their child about disability. I posted it on my facebook wall. A friend private messaged me with an interesting observation.
She has a teen son with autism. She said they had always told him that he had autism, but he was never able to really understand what they were telling him. Finally when he was old enough to grasp the diagnosis and the words, he was angry and wondered why his parents didn’t tell him about his autism earlier. Of course, they had been trying to tell him for years! He is currently in a stage where he blames his disability for bad choices and challenges, but his mom, my friend, is longing for the day that he embraces his autism and can move on and accept that autism is one of his characteristics that affect his life. This mom longs for the final step of her son’s embracing his disability. I thought it was interesting — it revealed a possible stages of understanding and accepting one’s disability, with the final goal of embrace. Interesting, right?
I know everyone is different. Parents. Individuals with disabilities. Everyone is different and will handle things differently.
Even though Chloe has always known she has a disability and that that is the reason she has so many doctor appointments and therapies… and it’s the reason that she has to work harder than others to accomplish a task, etc., lately when I actually have a conversation with her about disability, she says she doesn’t have a disability. When she says this, I just point out the fact that things are harder for her than for others and that she has to do things differently than others sometimes because her body works differently. And I tell her that, yes, she has a disability, but that she is a hard worker and doesn’t let her disability stop her.
Some may argue that I shouldn’t keep telling her that she does, indeed, have a disability. But I feel strongly that she needs to understand it and have the words to talk about it when she’s faced with challenges. If she is unaware of her disability, then it will be impossible for her to advocate for herself. Knowledge is power, even when you’re talking about disability — perhaps especially when you’re talking about disability.
My point? Talk about it! Keep talking about it! It’s important for our children to know what everyone else knows!! And to notice what everyone else notices.