Parenting a Disabled Child
This might be the biggest decision you’ll ever make as a parent. I’m talking about the decision to be happy.
No, no, really, stick with me here. I know what you’re thinking. “All this deciding to be happy stuff is bullshit.” I used to think that too. But try it from a different lens.
You don’t know what you don’t know.
And oh, how sometimes I wish I could go back to K’s diagnosis time, knowing what I know now.
Because here’s what I do know. I don’t need YOU to tell me when to be sad. And by you, I mean society. Doctors, teachers, relatives, strangers.
As a side note, as my brain is going through this thought process, I am only talking about my son’s developmental disabilities. He and many other kids have serious health struggles. I don’t at all intend to minimize real health struggles and suffering.
Ableism from the Medical Community
But the other stuff, I’m really sick of it. I’m really sick of people telling me when to be sad. I think back to the times that Kevin received some major diagnoses and the doctors who delivered that news.
You’ve been there, right? They sit next to you, not across from you, and gently tell you that your child has autism or IDD or something else. And they hand you a tissue.
I remember when I told the ob nurse that I declined all prenatal testing with Kevin. “Won’t change anything!” I said cheerily. And I remember her words to this day, “Maybe not, but some moms have said that they were glad it gave them time to mourn the loss of their normal child and prepare for life with a special needs child.
Whoa. Think about that. Back up, and read it. All these years later. Because this is a mantra that I have said in various forms. “You have to mourn the loss of your typical child…” Now I feel like punching myself in the face.
Instead of celebrating the child I did get, I should be mourning the loss of the child I did not get? This is what society tells us.
Think about this for a minute. Several times in my son’s life, I have been told that his mere existence is sad. Not in those exact words, but other words and mannerisms.
I mean, they’re not laughing, smiling and jumping for joy when you are told your child is intellectually disabled, right? The message may not be direct language, but it’s loud and clear: Something horrible has just happened to your family. And you should be sad.
I look at him now and wonder, “How could I ever have been sad just for him being who he is?”
Why do we do this?
Let’s set about changing it.
This post has actually been in draft format for months. And then when our so-called President said that “watching autism rates is horrible” I felt compelled to dig it up and finish it.
What’s so sad about autism?
Because you know what? It’s not horrible watching autism rates go up. What is horrible is to watch our government over and over again refuse to expand services for people with autism, and even make funding cuts despite the fact that rates are increasing.
What is horrible, is that autism rates are going up, to the point that pretty much everybody knows someone with autism, but we don’t have acceptance.
And we don’t even have acceptance, let alone celebrating who they are. I don’t see it as such a terrible thing that there are more people like my son in this world. Do you?
- It’s not sad that my son cannot talk. It’s sad that there is only a handful of people who know how to communicate with him. It’s sad that we do not take the time to understand others if they do not communicate in a format we are familiar with.
- It’s not sad that he doesn’t have any friends. It’s sad that we do not teach children how to be friends with a kid like my son, or encourage them to do so. I would say that if you are only friends with people who are like you, then you are lacking some social skills. Don’t you think?
- It’s not sad that he cannot read or write. It’s sad that our society pretty much seals your fate as a failure if you do not possess this one skill set. Think about it–one skill set–reading and writing, and how much value is wrapped up in just that.
- It is sad that he has been bullied. But it’s really sad that some children see a kid like him, and their first instinct is to mock and belittle him, rather than engage with and befriend him.
Ableism all around us.
It’s sad that people with disabilities have such low employment rates. But that means something sadder. That an overwhelming amount of people and businesses in our society see little to no value in hiring a disabled person, or going out of their way to do so.
Then we have the nerve to tell them that they are not employable because they lack empathy. Seriously? Who exactly is lacking empathy here?
When a mom learns her child qualifies for an IEP, that’s usually a sad time. But should it be? Don’t we want all children to be taught using their unique gifts and talents.
Why are we telling children that their unique way of learning is a disability? Isn’t the disability ours, in that we do not know how to teach to them?
Isn’t the real sadness that disabled children have only legally been allowed in public schools for one generation, and that we still don’t know what we’re doing, focus on outcomes or properly fund what they need?
How sad is it that despite 50 years of IDEA, we still have not improved outcomes for students with disabilities?
This isn’t just about me rambling. It’s about putting ownership where it belongs. It isn’t my son’s fault that he was born how he is. But if the rest of the world claims to be intellectually superior to him, why are those who are intellectually disabled not enjoying the fruits of our superior intelligence?
Why aren’t we using our intelligence to help him overcome his hurdles? How about we focus on the real lack of empathy which is towards people who live in a world that is not designed with them in mind? How about we all work on our own set of social skills and include everyone?
No more “Quiet Hands.”
If a child likes to stim by humming or flapping his hands, so what? If that brings them enjoyment or comfort, so what? Who are we to claim we are superior because we don’t have the need to stim?
We all have stimming behaviors. Some are labeled as more socially appropriate such as roller coasters or scary movies.
But we all do things that bring us pleasing stimulating responses. Because some people are better able to control our behaviors, does that make us superior?
Does that give us the right to try to curb their behaviors, even if they are harming no one? So why is this sad? Tell me again why my son’s stimming is so horrible and sad.
What is sad? A child with anxiety? Or a child being labeled that he is emotionally disturbed because of his anxious feelings?
It’s time that we as parents and advocates, change our language and our outlook. We need to demand more and better for our kids and set the tone for what is expected.
Our kids’ existence is not horrible and sad. How society treats them is.
And when we stop listening to negativity, I think more amazing things will happen.
