5 Things I Wish People Hadn’t Said to Me About My Son’s Disability

I wish someone could have explained to me that what at the time felt like a tragedy would develop into a happy life full of love and wonder. I’m not going to say that raising a child with severe developmental delays and complex health needs is easy. It certainly isn’t! But the blessings we’ve received far outweigh the challenges!

The author's son, smiling with a star-covered blanket

1. “I could never do what you’re doing!”

Yes, you could. You know why? Because it’s human nature to love your child and to adapt. What exactly is it that a special needs parent is doing that is so amazing? Not running away? Not spending the entire day in tears? (And trust me, there are tears, you just might not see them in public.)

All we’re doing is getting on with life. A special needs parent learns how a G-tube works, masters it and gets on with it until it becomes part of the new normal. If your child needed a G-tube you’d do the same thing. We all have the power to be the most amazing special needs parents, if by amazing we mean taking care of our kids as best as we can.

2. “He’s disabled for a reason.”

I particularly dislike this one. People often need to find meaning in things, and the birth of a baby with a disability is no exception. I understand that but I also know that the world is a far better place because my son is in it. I have learned so much from him and so have the countless others who he has touched.

But that doesn’t mean that his sole purpose is to teach us these things or that he is disabled because we needed to learn them. The disability just is. His amazing personality exists separate from the disability, not because of it.

One friend told me that her 11-year-old daughter is thinking about becoming a physical therapist because of her time playing with my son. That’s great! I love that! Then she added, “So you see! Your son is disabled so my daughter could find her passion!”

No, that doesn’t sit well at all.

3. “The universe never gives you more than you can handle.”

Yes, it does. All the time. There is tremendous suffering in this world and people are being given more than they can handle on a daily basis.

I think the sentiment behind this statement is actually sound. I think what people are trying to say is that this new life will become your new normal and you will adjust. It may seem like the end of the world now, but you will learn how to adapt and accept your child’s disability and (even though it may sound farfetched in the beginning) you’ll even find joy and comfort in this new life.

But somehow, that message never came through properly in this phrase, at least not for me. It sounded much more flippant, like they were saying, “You can handle this, so stop crying and being so overdramatic. Just handle it already!”

4. “He’ll have amazing hearing!”

When we explained to people that our baby was blind, one thing we were told again and again was that he would have amazing hearing. People who are blind may rely more on touch and hearing than other people do, but that doesn’t mean that every blind baby will grow up to be the superhero Daredevil!

What I found most annoying about this statement was the assumption that hearing and other adaptive techniques our son would need to learn would just come naturally. When you see someone who is blind walking down the sidewalk expertly avoiding obstacles with their cane, that’s the result of years of training and work. Let’s give them credit for that!

5. “If there’s anything you need, just let me know!”

I know this one sounds sweet and helpful, but put yourself in my shoes. My baby just got home from the NICU, I have only a bare understanding of how to use all the new equipment and monitors that came home with him, I’m terrified for his life and can’t sleep without worrying something horrible will happen while I’m napping… and I’m beginning to suspect that on top of everything else he may also be blind.

You expect me to articulate what I need? My house is a mess and I’m not positive that I ate anything today. I can’t really remember. I’m exhausted and so overly focused on my new little responsibility that I’m afraid to leave him even for a minute to go to the bathroom.

Rather than offer up some vague promise of maybe helping at some point in the future if I ask for it, how about just doing it? One of my friends came over one day and just cleaned my house. She just did it. It was one of the most beautiful acts of friendship I’ve ever seen.

So, if you have a friend or family member whose child was just diagnosed with a disability, this is something to keep in mind.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? 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.

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