What Not to Say About Special Needs


When Max was diagnosed with Epilepsy, we went into a tailspin. We didn’t know what our future held and what his development would be like. Of course, everyone who knew us wanted to help and offer kind words. I know everyone meant well, but there are things that people said to us, or still say that don’t quite sit well with me. I thought it might be helpful to offer a few things I would recommend you not say to a family with newly diagnosed special needs.

1. God wouldn’t give you more than you can handle. My husband and I are not religious people. We don’t really know that God exists and take no comfort whatsoever in this statement. In fact, it makes me kind of angry. If faith and religion make you feel better about the situation, then by all means, go to church and pray for us. But please, don’t talk to me about it. Also, all of this IS more than I can handle.

2. If anyone can handle this situation it’s you two. Max was given the right parents. Again, I can’t really handle this very well. You actually have no idea how well or poorly I’m handling this.

3. It’s hard to believe there is anything wrong with him. He looks perfect. You’re right, he does. Which makes it harder to deal with all of this because when people can’t see something physically wrong with him, they are more likely to think he just has a behavior issue. However, if there WAS something visibly wrong with him, I wouldn’t want you to talk about that either.

4. Special Needs Child vs Child With Special Needs. My child’s special needs do not define him. He is not a special needs child. He is a child who happens to have special needs.

5. Everything Happens for a Reason. Please, someone tell me, what is the reason that my child has to endure this?

What are some things people say to you that you wish they didn’t?

9 comments on “What Not to Say About Special Needs”

  1. Thanks so much for this story. The WORST thing anyone said when I had breast cancer was that God doesn’t give you anything you can’t handle. And I’m a religious person! All I could think of was starving children around the world, victims of genocide and others. Was this something they could handle? Arrrrrrrrrgh.

    One thing that works is under many circumstances is, “I’m so sorry.” Or, (for someone with cancer), “That must have been difficult new to hear. Is there anything I do to help?” Also, in some cases, a hug says more than words. Finally, if you don’t know what to say, try, “I care about you so much and I honestly don’t know what to say at this moment.”

    Whatever you do, don’t say, “I know someone who just died from that.” If someone says that to you I believe it’s your right to sock them in the nose!

  2. Not gonna lie, I go through waves of feeling some of this myself – especially when my daughter gets called “A Downs.” But this kind of attitude is why people are scared to talk to us about it and/or ask questions. They don’t know what to say and they are afraid they are going to say or ask the wrong thing. I can only imagine that as an outsider looking in, a post like this just makes our lives scarier.

    Personally, I love when people talk to me about my girl or ask questions. Even if they say something awkward, generally, they are trying to do or say the right thing. Take it the way its meant to be taken and you’ll feel a lot better. 🙂

    1. Melissa,
      You make a good point about this making people scared to say anything. I honestly didn’t think of it that way so thanks for commenting. I think what bothers me about most of the statements I outlined is that they kind of have become cliches. It’s almost like people just need to say something, so they say THAT. And after hearing it 10 times in a row from different people, I it’s almost like they don’t mean it. I would be thrilled for people to ask questions about Max as you say about your daughter.

  3. Jenn,
    That’s a good one! Lots of people said that before Max started talking, “oh you’re lucky, once he starts you’ll be wishing for these days again”. Um, no, not really.

  4. Hey Kris-Ann,
    Great too meet you for the few minutes at the walk! Hopefully next year we will plan better for my over tired kiddos.
    The worst thing someone has said to me was on Coles second birthday. We were at Target. She told me how wonderful Cole was being waiting for his pictures to be taken. I thanked her and she asked me how old he was. I replied that he was two and she told me that her kid would have been running all over the place. I told her that he can’t walk, and she replied with “oh you are so lucky”….am I? I’m not sure I see it. Then she must have realized how bad that sounded, and proceeded to insert her foot further into her mouth and said, “I hope my daughter is a late walker too.” I just smiled at her and headed into my picture appointment. To summarize this, don’t tell me I’m lucky for my son having special needs and don’t wish them on your own kids.

  5. Here’s the thing: you’re right, people couldn’t possibly understand what you’re going through, but I honestly believe they recognize that and are just trying to let you know that they support you. I find that, even though my own little sister died 10 years ago, I still have NO idea what to say to someone who has lost a loved one. Or has Stage 3 cancer. Or has a child facing ANY kind of struggle. Or to someone who can’t have children. I am paralyzed by guilt for my own good fortune (and yes, I do acknowledge that I have lots of it even though losing someone you love is just about the worst luck someone could have) and am so afraid of saying something stupid or insulting or trite or condescending that I admit to often trying to avoid speaking to them entirely. And that is so AWFUL! Because I remember that, after my sister died, people could have walked up to me and said “Goobley Gook” and it would have – literally – meant the WORLD to me. But for some reason I still over-think what I’m supposed to say and get all tangled up in my own head and then end up not saying anything at all … which, don’t you think is even worse than saying something stupid? In no way am I trying to argue that people don’t say dumb things that are frustrating and that it’s hard not to take personally — and there are certainly the small handful of people who are not well-intentioned, which boggles my mind — but I would like to believe that, overall, the fact that they are even saying *something* is a testament to their empathy for you and what you and your son and family are having to deal with. Even if it comes out badly. And I’d be willing to bet money on the fact that they replay what they said and how it must have sounded and kick themselves for it for days afterward. That having been said, wow, from one mom to another, I can’t even imagine what a roller-coaster of emotions this whole process must be for you – and I’m so very sorry you have to go through it!

    1. Nicole,
      You’re totally right, not saying anything is almost worse. When writing this, I did think about the fact that these words might actually help other people…they just didn’t help me. Honestly, all I wanted was for someone to say, I’m so sorry this is happening. A friend of mine had her infant son pass away just days after he was born. At the funeral, through my tears, all I could do was hug her and say “I’m so sorry this happened”. And to you, I’m very sorry for your loss.

  6. Sorry for this long comment…

    A little history for my story: I have a birth defect in my reproductive organs (one birth canal leading up to 2 cervix, each with their own uterus) and was told by multiple doctors that it would be VERY hard for me to get pregnant and even HARDER for me to carry a pregnancy for any amount of time, let alone to full term. My husband and I were shocked to find out I was pregnant, and then the terrifying job of growing this little peanut inside of me began.

    We were very quiet about being pregnant – only telling family and maybe 3 or 4 friends – because in all honesty, we didn’t think that the outcome would be an actual baby. Our first milestone from the doctor was to make it to 24 weeks, because then there is a chance that the baby will survive (yes, a chance, but only a 39% chance). When we made it to 24 weeks, I can remember EVERYONE saying that “we made it!” and now we didn’t have to worry anymore. They didn’t take into account that if our little boy were born the next day he would have less than a 40% chance of surviving, need INSANE ammounts of intervention to keep him alive, and weigh one pound. I spent last Mother’s Day weekend in the hospital, hooked up to machines and receiving injections ever 30 minutes, trying not to have this exact scenario happen. I was so annoyed that people were telling me we were in the clear! And it didn’t stop until he was actually born.

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