Parenting / Tuberous Sclerosis

My Take on What Not to Say to a Special Needs Parent

I’ve read with some interest several circulating posts regarding “Things Not to Say to a Special Needs Parent.” I’ve never reposted the links though. It’s not that there is anything wrong with these posts, and there is nothing wrong with the fact that others repost them, but I just find myself too much able to see both sides. There might be one or two I agree with, but there are always a few that I think are genuinely well-meaning. The people who write them do it from the heart because that’s how they feel. Others repost and comment that they totally agree because they have similar experiences. But sometimes I think these posts unintentionally leave people on the other side of the fence feeling like they can’t say anything for fear of offending us.

Some comments are insanely obvious in their offensiveness, and I understand their inclusion on these lists. In fact, it is sad that someone even has to point out that you shouldn’t say these things:

1. What’s wrong with him/her? (Many parents don’t mind being asked about disabilities. Just do it politely and out of earshot of the child.)

2. That kid needs a good-old fashioned spanking. (Or any other disciplinary type of advice). 

3. Were you taking medication while you were pregnant? (Really? Was YOUR mom taking medication while she was pregnant with you?)

But so many of the things on these lists I believe are coming from really well-intentioned people. Some of these things came from me at some point. To be clear, I’m not criticizing you if these comments upset you…I DO get it. And I’m also still fairly early in the game. Check back in a few years. Maybe I’ll feel differently.

1. I don’t know how you do it! or I couldn’t do what you do!

This easily would have come out of my mouth two years ago. It would have meant that I’m genuinely impressed by your strength. Now people say it to me. But the truth is, you can do it because you have to. If I had known before I ever became pregnant that Connor would have health issues, I would not have had kids at all. But life doesn’t work that way. If I can do it, you can do it. You’ve just been lucky enough not to find it out. So I choose to take it as a compliment. That’s me. But I do understand why it bothers some parents.

2. Have you tried…

For me, this is all about tone and presentation. This is not in and of itself offensive to me. I do not mind suggestions or telling me something you read or saw worked. I don’t mind when friends and family tell me that they know someone who recommended this supplement, or that they read an article that mentioned this type of therapy. You are simply giving me an option to look into. That is cool. What is not cool, is presenting it like that’s what I should have been doing all along, or that something is wrong with me because I’m not doing X, Y or Z. In my case, I will say the obnoxious comments like this have only come from online people I didn’t know personally. When I mention my son’s intractable epilepsy, don’t tell me I SHOULD be giving him fill in the blank with the latest hot supplement.

3. He seems fine to me!

I know my kid is delayed. But not having any other kids to compare him to I’m not always totally clear on where he stands on every little nuance. I don’t mind people commenting about the areas in which he is relatively on schedule or performing well. That being said, it’s going to come off very insincere if you say it when it’s a situation where it’s clearly not the case.

There is really just one thing I’ve found that I hate…like, beyond despise.

It’s the God stuff. God doesn’t give you more than you can handle. Or God gives special children to special parents. Or God has a plan.

I have never been a particularly religious person, but I’m not an atheist. I do like to think there is something after we die. I hope there is. But the thought that these paths are chosen and that my child and I were selected to deal with this makes me mad. I can deal with free will and the thought that things just happen because they happen and it’s up to us find our own path in life. The thought that it was part of “God’s plan” for my child, or any child, to be born with an incurable genetic disorder does not bring me any sort of peace. It infuriates me. I don’t want God to have a plan that included this because then that means the plan could have been altered so that he had been born without it. That doesn’t exactly make me fall on my knees.

But here is the tricky part. Some special needs parents do believe this and use these phrases themselves. What ticks me off, brings them comfort.

You won’t always get it right. Circumstances and moods change. Connor spent his first five weeks in NICU. His seizures started the day he was born. We met with countless doctors, nurses, therapists, chaplains and volunteers that would stop by his bed. A discussion of his medical condition would inevitably always close with, “Congratulations!” Congratulations on what? That my kid has some disorder I’ve never heard of and they can’t control his seizures? That he probably needs brain surgery? That I have no idea what is going to happen to him and I’m so scared I can barely breathe? But of course they said congratulations. I just had the most adorable, awesome kid ever born on the face of the Earth. I just wasn’t in a place to see it right then.

At the end of the day, it is really hard to know the right thing to say. All you can really do is have good intentions and be supportive the best you know how. We will let the ones that aren’t fade from our lives. 

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3 thoughts on “My Take on What Not to Say to a Special Needs Parent

  1. I have a 1 year old daughter with TSC. I discovered your blog a month or so ago and I look forward to reading it. This, so far, is my favorite post. I can relate to everything you say. I know people mean well and I also know some are uncomfortable when I mention I have a special needs child and they just don’t know what to say. I personally don’t tell many people, not because I am ashamed of my beautiful daughter but because I don’t want to deal with the whole response back from people when I tell them things. It’s just awkward. I am so glad to know that you get it and you understand, so thank you!! (And keep writing your great blog!) — Jennifer

  2. Definitely a tricky topic to address. I agree, there are so many perspectives and everyone’s coming from a different place. What offends one may please another or make no difference to them. I’ve found that I don’t mind so much the words that people say about my son but the way it feels when they say it. I am definitely open to conversations with others and jump on any chance I get to spread the word about what TS is! I just appreciate when they are coming from a place of sincerity in whatever it is they are saying. I hope that I can approach others and the issues they are struggling with in the same way. :)

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