On invisible disabilities and respect No, he isn't misbehaved or "that screaming toddler whose mother had no control over."

One of my dearest friends has a son who is just a few months older than my youngest daughter. We were together on a daily basis as our sons were also best friends. Together we watched for our younger children to reach their “projected milestones” together. From crawling to walking. From babbling to talking.

As these moments came we watched my daughter reach these milestones and waited and waited for her son to reach them as well. When he was not reaching the “age appropriate” milestones, she began to worry that there was something that was not quite right. Her mother’s instinct told her it was more than just a delay in development. The way he wouldn’t make eye contact. The way he screamed if even the smallest things bothered him — such as a tag on his t-shirt or music in a store.

Finally, she took him to her pediatrician which let to more specialists and more testing. She eventually received the diagnosis that he was on the autism spectrum. Whereas it sounds so rainbow and pretty, it was a frustrating diagnosis for her. Yes, it answered a few questions. But for every question it answered, a hundred more were brought into her life.

Having been around her son for so long, I was used to the times he would scream in public or get furious over strangers trying to touch him or look him in the eyes. It was who he is. But to others, he was that “misbehaved child” or that “screaming toddler whose mother had no control over.” Judgment. Everywhere judgment.

Karen Rani recently wrote a post about this very issue. In her entry, Karen shares with us the story of her friend (and fellow blogger), Sassy whose son has special needs. The entry is very educational and touching.

Ryan loves to sing and dance, as I mentioned. Quite often, it makes no difference as to where he is, he will sing, and skip and play, as young children do, and enjoy himself wherever he is. Sometimes that is in a store, or a parking lot, or in line at the checkout. He’s a happy kid, period.

So when your child, who sees Ryan enjoying himself, nudges you to point him out, and you turn to your friend and do the same, his mother is watching you. You can either choose to make this an educational time for your kid and say something about not judging others, or you could point, stare and call Ryan weird. But know this: his mother sees you.

While her heart is breaking at your actions, know that while you’re getting a kick out of making fun of a child with special needs, you are hurting a mother who cannot say anything for fear of calling attention to your abhorrent behavior to her young and innocent son. She wants to protect him from this world of cruelty and people who judge based on looks.

I know as a fact it hurt my friend many times when other children or parents would stare, point or give that judgmental look that these moms come to know so well. Sassy herself weighs in on this entry.

What Karen wrote today made me cry. I cried because what she wrote was awesome and also because it’s true and because it does break my heart when people stop and stare at my child and I hear someone call him ‘weird’, or worse. I live this almost every time I go out with my son. He’s constantly jumping, running, skipping, singing, talking to himself, making ‘blowing up’ sounds, acting out little scenes from a Scoobie movie perhaps…my point is, he’s usually doing something. He’s got a pure innocence about him and he’s usually oblivious to the rude people that we encounter. I, however, am not.

Sometimes we see kids doing things that we think might be misbehaving or just a child out of control. Do you look down at his mother? Do you look at that child as if he should “behave better in public?” I am sure at one time or another if you have not been in this position you probably have–intentionally or not. And most likely, his mother saw it and broke a little inside.

In an effort to educate herself on how to handle a situation like this, Elizabeth asked a question that perhaps other people may have wondered as well.

And now, as a parent, I’m curious-what would Sassy prefer people do in that situation? If her son breaks out into song in the checkout line or starts dancing in a parking lot, and my son is nearby and he asks me “what’s wrong with that boy?”, would it be okay for me to ask? Would Sassy rather educate people about her son, or would she prefer that people mind their own business? I’m asking because should my children ever encounter a boy like Ryan, and ask me a question about him, I want to know what would be appropriate.

If you are not familiar with a family who has a child with special needs, you may have been surprised by Sassy’s answer to her. (I cut out the main part, but you should go read the entire post and all of the comments. They are educational to all of us.)

Elizabeth, that’s a great question and please don’t be offended by my answer, it’s not directed at you, but I want to make people understand that even those words, that particular sentence hurts…Why don’t I tell you what’s RIGHT with him, that’s what I’m thinking when I hear that. So I guess if another child asks that question if they should happen to see Ryan in public, skipping, dancing and singing, I would want their parent to say, ‘nothing, he looks pretty happy to me’.
Thanks Elizabeth for asking that question, so I could explain how even that can be upsetting for a mom of a special needs child.

It is not always easy to know what to do when you are confronted with anyone who is different than you are. Or different from your children. Education is the best way to know how to handle these situations. I applaud Karen for bringing the situation out in the open and Sassy for talking so freely and openly about it. And moms like Mel of Freak Parade who not only blogs about her son, but has given him his own blog to express himself.

Just remember to think before you react. And as I have been saying in the last few entries here, let’s all stop the judgment and start the support. We are all in this together, Moms. And it is up to us to educate our children about other kids with invisible special needs.

P.S. Protect yourself from the coming data-powered panopticon by getting a VPN.

I have been a professional freelance writer for over 10 years. I am currently working on my memoir with my amazingly patient literary agent. When the work all becomes too much, I do what I do best...motherhood.

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[…] their special needs, their lack of social radar, are invisible. As Jennifer Satterwhite wrote on treating children with invisible special needs with respect even if you don’t understand […]

Mel
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Mel

Wow. Thanks for writing this. 🙂 People can be so judgmental of anyone who is not what they consider to be “normal”. They forget that their children are learning to be judgmental by their example…and that the people that they are staring at and whispering about have feelings. My son does not always notice the negative reactions, due to the nature of his Asperger’s….but I do. And his four year old sister does. And watching him try to process it when he does notice is a heartbreak that I wouldn’t wish on anyone.