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Why I’m Rethinking My ‘Things Not to Say to Special Needs Parents’ List

A while back, I wrote a post about special needs parents and the things that you shouldn’t say to them… ever. As I sit here today thinking about that post and going over the list of things that bothered me, I feel kind of silly.

These were some of the things on my list:

  • “She sure looks like she has a mild case of Down syndrome.”
  • “Kids with Down syndrome are always happy.”
  • “I’m so sorry that this happened to your family.”
  • “She looks so normal.”
  • “You sure are handling this well.”
  • “What will happen to her after you die?”

But I’ve come to a new point in my life, or had an epiphany, or crossed a bridge, whatever you want to call it. Whatever it is, it feels pretty good.

I’ve been overly protective when it comes to Adele. I overanalyze almost everything and I automatically assume people are ignorant and can’t see the beauty that lies within my child.

The first one on my list above makes me laugh today. I laugh because I actually said this when I was pregnant with Adele. Those words came out of my mouth. I didn’t know I’d said this until I recently came across a message I sent a friend on Facebook. I wanted my child to have a “mild case” of Down syndrome.

Those words irritate me when they come out of another person’s mouth, yet I said the exact same thing. You know what this tells me? I was ignorant. I was uneducated when it comes to Down syndrome. I had no idea, yet I get offended and on the attack when others make these types of comments about my child. It made me take a step back.

Recently, I’ve come across some posts on Facebook where moms and dads are bitter at others for the comments they make about our children. I think what we need to realize is that we’re the ones traveling this journey. We’re the only ones who know exactly what it’s like to walk in these shoes. We experience the major ups and down of having a medically fragile child or a child with special needs. We need to stop assuming that others get it. They might not get it. Doctors, nurses, therapists and other professionals don’t always get it. It’s up to us to speak up, and we need to encourage change. But biting your tongue and cursing in your head isn’t the best solution.

People don’t know what to say. People don’t know how to say it. People sometimes feel uncomfortable because they don’t want to say the wrong thing, they don’t want to hurt our feelings, then it comes out all wrong and we get upset and post it all over social media that another jerk made an insensitive comment about our child.

I realized I was one of those people before Adele came into our lives. I know I said the wrong things, I asked the wrong questions and I said things in a way that may have been offensive. Never would I have wanted to cause pain or hurt to others, but it didn’t always come out right. I could just imagine what others said about me after I walked away. What did I expect of others? I wanted to learn, I wanted to understand and I needed for others to respect that I required some guidance.

I think sometimes we forget to relax. Last week, I was at Heritage Park with the girls. This lady kept staring at Adele. I was going to ask her what she was looking at. When we walked past her, she stopped me and told me that Adele was absolutely gorgeous. She told me that she was a perfect little package. What did this teach me? Stop assuming the worst. Stop looking for negativity. Stop thinking that the world is a big cruel place.

Please don’t come to the conclusion that I will tolerate abuse or hatred towards our children. I will always advocate for our children, I will fight for what is right and I will stand strong behind my beliefs, values and morals. There are some things that are inexcusable and offensive to myself and my family. I do not waiver when it comes to these three things.

1. The word “retarded”:  just don’t use it in any context.
2. The term “Down’s baby/child”: person-first language is a must for me.
3. Comments that are deliberately hurtful and malicious.

The days go by so quickly. The moments become distant memories. I don’t want to look back in 10 years and regret that I let worry and fear consume my days. There are mean people everywhere and there will be plenty who will come in and out of our lives, but there are so many amazing and kind people in the world who will love our children, who will support us and who exude happiness, love and light. Be the parent our children need us to be. Educate others, but do it with kindness and respect.

I want my children to see their mom as a person who’s making a positive difference in the world, one who does not let negativity consume our days, but a mom who welcomes others into our lives. Our children are a product of their environments. Slow down. Enjoy Italy, Holland and all the other places our children will take us.

A version of this post originally appeared on A Perfect Extra Chromosome.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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