Sometimes…You Shouldn’t Say a Word – Health Activist Writer’s Month

As Special Needs Parents, We Sometimes Write Before we Think

Special Needs Parents aren’t immune from this human failing, after all. We all are a bit guilty of sometimes writing something in anger, writing something without considering how deeply we feel about what we say. When emotions are high, which is often is when talking about our children with special needs, we lash out to hurt before being hurt.

The problem is that when we do that we are giving up a chance to think critically about life in a way that can make a difference. I can see you shaking your head out there. So let me explain …

Another Special Needs Parent’s Opinion isn’t my Own

Health Activist Writer's Month Challenge I wanted to write about this yesterday. I was going to write up a rant of a post and slap my autism awareness month label on it and proudly declare my right to feel offended by something another parent said. If I’m being honest, I still feel offended about what this other parent said, publicly, to parents new to a diagnosis of autism for their special needs child.

You might be familiar with the article–I lambasted the author, another special needs parent, on Facebook and in comments at the news site she was published in. In support groups we discussed the horrible things this mother said. And yes, I’m still upset about it. I still think she shouldn’t have had her tongue-in-cheek article published (and I’m being generous by assuming it was tongue-in-cheek).

But I stepped back from writing about this here at the Cafe yesterday instead, I sat down to write a rant and instead wrote about the journey of being a special needs parent, of dealing with autism. I took the last 24 hours or so to think about why I wanted to rant.

And I realized, the time wasn’t really right to say a word about this yesterday.

Maybe the time isn’t right now … but I won’t be publishing a link and I won’t be mentioning names, because as writers I think that what we respond to and write about should be more carefully considered than simply being a rant. (Read back a bit and I’m sure you can still find a rant here or there, I am only human after all). But sometimes, if we are to take the high road about a subject, we need to understand why we feel the way we do.

As an advocate, an activist, I have a responsibility to examine viewpoints I place before my readers. As a special needs parent … not so much. But I’m writing now as that advocate. Because I think much of the time we react to, respond to, things others put out there before we consider why we are affected the way we are.

What has My Panties in a Bunch?

30 Days of Autism Awareness Month Challenge Begins at the Cafe Without revealing names, I’ll just say that this mom wrote up a post about the ten things parents of children newly diagnosed with autism should know. The first thing on her list was a prescription for valium … for the parent. She put down special needs fathers, she made light of things that deeply offended me.

And yet …

I didn’t want to rant about how wrong she was, but why she shouldn’t have said those things. Why was that? If I was horribly offended shouldn’t it be because what she said was way off? Maybe, but her experience was probably accurate to her. Ill-stated, perhaps, but real. It wasn’t my experience, and it sure wasn’t what I felt should be the lead story on World Autism Day for this particular publication.

But the root of the matter was that I disagreed with what she said and how she said it.

And that brings us back to that little saying my mom used to tell me as a child … you know, “if you don’t have something nice to say, don’t say anything at all.” See, in getting upset with this writer, I was getting upset with words she wrote. Maybe she agonized over the right words to say. Maybe no one told her that her piece would be the lead story on a day many would be looking for inspiration and hope and information … real information. 

The fact is, she didn’t think through her choice of posting that. She spoke as someone representing an entire community of special needs parents, when in fact she only represented herself and her own views. And she didn’t stop to think about the power her words would have, how her views could be misconstrued by the newly diagnosed parent as being the real deal.

Her one article, which has offended so many, is telling other parents that this is the real deal. The real deal as in being her life, all the time. As in being all she took away from her child being diagnosed with autism. And while she is completely within her rights to feel that way, she couldn’t possibly have thought that she had the right to speak for an entire community of special needs parents, many of whom feel quite differently.

And see, that’s the difference, also, in writing for a publication and writing as a blogger. If I wrote about the real world according to me, on my blog, and told parents to hook up with the valium because those first few years would be a bumpy ride, it would have a completely different connotation than the words she used, in a forum in which she was being presented as the voice of a community.

What do we take away from this?

Know what you feel and why you feel it. Be willing to stand by your convictions. And be willing to stand up and tell someone else you disagree and why, while still respecting their right to feel however they want (even if their particular viewpoint makes you want to throw up in your mouth a little).

I wrote it yesterday … our real lives aren’t pretty. They are filled with ups and downs and challenges that stress us more than the average parent. Facts. But these lives of ours aren’t without their perks, you know?

Smiles and giggles.

First steps and first words.

Experiences you never thought you would experience being celebrated as the miracle they are … because life has been hard, and you’ve learned the hard way that you have to hold onto the good when you can.

Being a special needs parent is hard. But claim it. Don’t speak for anyone but yourself. And realize that everyone handles this stress in their own way.

So no, I’m not ranting about the woman who really should have been quiet, but I am owning up to why I hate what she said. She trivialized our experience as special needs parents. She spun it into a special needs mom versus special needs dad thing, when it should have been about being a team. She made light of the serious emotional effect being a special needs parent (and, let’s be honest, life in general) can have on you. And she didn’t even mention the light her child brought into her life. She didn’t mention any positives, only negatives.

And here at the Cafe, I’m all about keeping it real. But part of telling you about being a special needs parent is being quite clear that you take the good with the bad. And you make the most of it. It’s not all bad. And it’s not all good. It’s life.

This post serves as both my 2nd day’s post for the Health Activist Writer’s Challenge and for my 3rd day’s post for the 30 Days of Autism Challenge. Yes, I know I’m starting to run a little bit behind …bet hey, I had to think a bit before writing this one.

Have you ever read something that made you furious and had a hard time isolating the reason why you felt so strongly?

Are you a special needs parent who has felt threatened by someone else’s viewpoint? Can you share with me and other parents what you did and if you still feel the same way?

Katrina Moody

Katrina Moody

Graphic Designer, Wordpress Addict, Blogger at Kat's Media & More
I'm a special needs parent before just about everything else in life, but also a passionate advocate for my three boys and husband, who all have a bit of awesomeness about them. Awesomeness = Axenfeld-Rieger Syndrome, Autism, Epilepsy, Dyslexia, Cerebral Palsy, and more. It all adds up to some awesome kids and an amazing family.
Katrina Moody
Katrina Moody
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