Over the years, I’ve had clients with all kinds of diagnoses. And yeah, some of them were pretty extreme and intense for a young child. I had this one mom and she was trying to protect her son. He was young, a tween, at the time. He did not yet know of his diagnoses, but he did know that he received special help in school for some things. There are many reasons why you should tell a child about their disability. Here’s a good one. A careless teacher left his IEP out. The class got a hold of it. And they read it. That kid was bullied relentlessly for more than 10 years.
The teacher never received any discipline for this, and it had happened years before I was their advocate. In her defense, mom telling the child about the diagnosis wouldn’t have necessarily changed anything. But, at least the child wouldn’t have been blindsided twice. As it was, the kids were mocking him for his (mental health) diagnosis. But to add insult to injury, he had to go home and ask mom if it was true. It was.
We had this come up recently in the Facebook group. A teenager was unaware of his IEP and a teacher told him about it. I’ll be honest, my first instinct, and my first response to this parent was, “Self advocacy skills don’t just magically appear.” But then a few others started to post reasons why you should tell their child about their disability and not all were polite. I closed the thread.
So let’s get into it. Should you or shouldn’t you tell your child about their disability? What about their IEP? Like most other areas of parenting, should we just leave parents alone and let them decide? Or should we try to nudge them one way or another?
I’m going to go out there and just state my opinion. I believe that all children should be told about their diagnosis (es) and their IEP. However, parents should know their kid and decided when to tell them.
6 reasons why you should tell their child about their disability
- If you don’t tell them, someone else might. See examples above. I think that not telling a child is rare. It is assumed that they know. If you do not tell your child about their disability, someone else might beat you to it. And it may be unpleasant for the child. Not to mention the trust issues they may develop from you keeping this secret.
- Keeping it secret assumes it is a bad/negative thing. Being disabled, on it’s own, is not bad. How society treats disabled people, that is bad. But, inform them, support them, let them know of what challenges they are going to face. Treat it as what it is–a fact of life. Hiding it makes the assumption that it is something that needs to be hidden. And it is absolutely not something they should be ashamed of. They are going to face enough negative stigmas in life. They don’t need that vibe from Mom and Dad.
- Most kids know they are different and will be relieved. I read a lot of first person disability blogs. (Blogs where the people who write them are actually disabled themselves.) Most have said that even before their diagnosis, they knew that they were different from most kids. And that it was a relief to find out that there was a good reason why they felt different.
- Self advocacy skills are a must. And nope, they don’t develop overnight. Self advocacy skills don’t magically appear when a child turns 18. The sooner they learn, the more time they have to practice.
- As the parent, you should be in control of the first conversation. You want to be able to set the tone for this news. A parent can inspire, educate, comfort and support. A bully, like in my example above? They just told the kid he was a psycho. That was his first experience hearing about his diagnosis.
- Not knowing the diagnosis doesn’t change the diagnosis. The news doesn’t change anything. It doesn’t make their condition better or worse. It prepares them for dealing with it, but it doesn’t change who they are. They are going to have autism/epilepsy/anxiety whether or not you tell them…so why not arm them with more information?
By now, you might be saying, “Hey, I hear you…but….”
Reasons why I don’t want to tell my child about their disability
“I don’t want them to feel different.” They already feel what they feel. Find them role models. Help them develop advocacy skills.
“He has anxiety and this will make it worse.” It might. But so will someone else telling them unexpectedly. Or the child finding out unexpectedly. Increased anxiety is certainly a valid reaction to news like this, but prepare yourself for it.
“I don’t know what to say.” Talk to your doctors. Talk to support groups. Read books. Find first person blogs. The information is out there. You are not the first parent to have to do this.
“But our situation is different.” It might be. Know your child. I still wrestle in my head with “what if it’s a fatal disease? Then do you tell them?” There are no right or wrong answers across the board. I personally feel that overall, in moving towards acceptance and normalcy, we have to make this a part of every day life. Not a big secret.
“Ok, but this is just not right for my family…please don’t tell me how to parent.” I get it. I really do. Now may not be the time. I’m going to post a bunch of links below to help. I think that sooner is better than later. I think that as parents and people with disabilities, we have to work to erase stigmas, and it begins with us. But yes, the final decision is up to you.
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