Tuesday, January 24, 2012

You didn't have to say that

Dear Mom I Recently Met,

So, there was something I didn't bring up when we were chatting the other day. Because I was honestly stumped. Our conversation was going great until you mentioned your child had some issues. "It's mostly sensory stuff," you noted. "But compared to your son, he's normal!"

Ooomph. My heart lurched, my mouth kept talking. "It's all relative!" I responded. And I went right on conversing with you, even as my head processed and reprocessed what you'd said.

I am not a shy person. I hesitated to tell you how unnerving your words were because I didn't know what to say, and I also didn't want to sound defensive. I sometimes get a little paranoid that moms of so-called typical kids think they have to treat me differently because I have a kid with special needs.

Now that I've thought it over, though, I don't think I was being overly sensitive. That was a pretty shocking thing to hear.

Listen, I know you didn't mean it in a hurtful way. In your mind, I'm guessing, you didn't want to come off as if you were making light of Max's challenges. Sensory issues vs. cerebral palsy may very well seem like a cold vs. cancer to you.

But in my mind, your words made it seem as if Max were the farthest thing from normal. And that was painful to hear.

What's often hard for parents to understand is that Max isn't totally different from other kids. He may not speak like many kids do and his hands may not work as theirs do but if you can look past his disabilities, you'd find a kid like many others—a kid with a great sense of humor, a love for cars, trains and all things that go fast, a whole lot charm and all sorts of other awesome.

Perhaps, too, there was some denial going on here—as if you wanted to connect about your son's issues yet at the same time confirm that, unlike me and my child, the two you do not inhabit Planet Special Needs. I understand. I know denial well. Sometimes, it comes in handy.

Still, there's no point in speaking those words.

Next time we meet up, I'd love to talk like any moms do. No comparing our kids' issues, no thinking about them as "normal" or not. Let's just connect as two moms, doing the best we can.


  1. "Compared to your son, he's normal" is a pretty awful thing to say no matter how you slice it. Something like "I'm grateful my son is doing well overall" would have been more tactful.

  2. Ugh! My ears hurt when I hear people use the word "normal" when discussing special needs issues. Normalcy doesn't exist.

    1. Thank you! If normal did exist, we would all act the same, look the same, dress thesame, eat the same things, and so on.

  3. Ouch.... hopefully that mom is reading this today! I find you can never be prepared for those kinds of things - they just come out of nowhere.

  4. I'm so sorry that happened to you. it can be so painful when parents speak without thinking first. I once had a mom just stop and ask me, "So what's WRONG with her?" It sucks.

  5. There is no normal, special needs or not. I have four children, the "normal" and one with downs. They are all special and have different needs. Hoe sad that a mom who faces many of the same issues can't just be supportive of a fellow mom.

  6. Words hurt. I've been on the receiving end of this many a time myself. I will tell you that sometimes it comes from a place of embarassment that they are complaining about something they think is so small when we have so much going on (my son has Autism, ADHD, & seizures).

    I think to be honest about it next time & if you are friends with her or want to be, discuss it. Say "I want to hear what's going on in your child's life just as much as I like to share what's going on in my child's life. Every child is unique and has challenges or things going on & these issues are important. We need to listen to one another & not judge."

    Hope you have a great day.

  7. You go, girl! I'm tired of thinking that someone "didn't mean it". This would be a much kinder planet if people put their brain in gear before their mouth.

  8. Shortly after my son was born (my 2nd of 3 children) with Downs, my neighbor and I were having a matter of fact conversation about him having Downs, and she says to me, "Oh, so he's going to be slow, huh?" *(disclaimer: to this day, I still swear it was the postpartum depression talking) I said, "Well, no slower than you." Smiled sweetly and walked away.

    ((For the record: she only waves and says hello to us now... and I know, it was not nice on my part at all, but it wasn't her first time offending me. When my daughter turned one, I pierced her ears. This same neighbor told me it was child abuse and how dare I do something like that to a baby?! Um, because she's MINE and as her mother, it's MY choice.

    Some people need to hear those direct responses to understand how inappropriate they are...

  9. I'm sorry that happened and I've SO been there. I've sat there in shock and not said anything b/c I couldn't believe what I had heard.

  10. No, she sure as hell didn't have to say that. But she did, because she is trying to convince herself that her kid is normal. And he isn't, because my kid 'just has sensory issues' and he isn't normal. Or neurotypical. Or whatever she is trying to make herself believe. I feel horrible for you, but I feel worse for her kid. I can't imagine how hard she works to make her poor kid be something he just can't be.

  11. Ellen, I know exactly. Exactly. I get that mostly when people are describing something their child does that is the same as something my special needs kid does, but then describes it as "okay because it's different because..." It's okay when my kid does it too. It's okay for your kid to do things my kid does. It doesn't make him bad. It's to the point where I don't say "Oh, Jack does that too," because I don't want to deal with the response.

  12. No one would dream of saying, "Compared to your daughter, she's pretty." or "Compared to your thighs, mine are slender."

    In hindsight, that would've been my comeback. ;)

  13. Such a slippery slope. Sorry she was so rude.

  14. Good thing she didn't say at least her son "looks" normal. I hesitate to talk about my kids as special needs because their issues(Auditory Processing with anger issues) are 1) Not physically obvious 2) Not life threatening 3) Not what makes them who they are. Normal is not a word I would choose (or aspire to!) to describe any kid. Max is who he is not what he has. It sounds like this woman is insecure about how she is handling her own kid's issues. Sad to see moms try to compare issues like that.

  15. Good thing she didn't say at least her son "looks" normal. I hesitate to talk about my kid as having special needs because his issues (Auditory Processing with anger issues) are: 1) Not physically obvious, 2) Not life threatening, 3) Not what makes him who he is. Normal is not a word I would choose (or aspire to!) to describe any kid. Max is who he IS not what he HAS. It sounds like this woman is insecure about how she is handling her own kid's issues. Sad to see moms try to compare issues like that. It is not a competition!

  16. I actually had a parent tell me once that if I treated my child with autism like a normal child, he would act like a normal child! Now I am rarely (and I mean rarely) speechless but this comment so surprised me that I hoped for a moment that I had heard it wrong! No such luck, this woman actually went onto say, "If you coddle children they will never get past their issuses!"

    I could feel the anger burning up inside me, I took a deep breath and asked, "What is your experience with special needs children?" "Oh I don't have any experience with them, there are just some things that are instinctual." I smiled, looked her right in the eye and calmly responded, "That's what I thought, thank God you don't run the world!"

    I wish she were my only experience with this kind of thing. In her mind she was well meaning. Hopefully, she has since gotten some education on the matter.

  17. Sigh!

    Brilliant comeback.

    I remember being at a play program with my 18-month-old and this other mom was sitting with her toddler and she turned to me and said: "What does he have?" And I thought she was talking about the toy my son was holding! Snort! xo

  18. I know that hurts Ellen! I commend you for being totally classy! Sometimes I wish there was a "pause" button so that people could stop & think before they open their mouths.

    I've thought SO many times "I'm sure they didn't mean it to be hurtful!" Nonetheless, it still hurts.

  19. Wow...that just sucks! Some people just don't think before they speak. I even had that kind of thing with my daughter who was a preemie and had several surgeries. My friends would talk about health issues their own children had and say "of course, it's nothing compared to what you went through." and while the words aren't as hurtful, it's a similar motivation behind them.

    And I hope if you hear this again, you take Debi's advice and say something like "compared to your thighs, mine are quite slender!" :-)

  20. We don't always need a wiIttty comeback. A quiet, honest truth can be just as effective.
    "Wow, it really hurt me to hear you say that." would have been tactful, honest, and strong.
    Sorry she said that, sorry it ruined the rest of your otherwise, possibly enjoyable mom time. That's the real loss here, when other moms don't feel like we can relate to them at all, as other moms, plain and simple.

  21. I can't help but wonder if she was thinking that she needed to say something lest you think "she does not get it, her issues are not a big deal" but it just came out terribly wrong. Not that what she said was okay, because it isn't. And as a teacher in a inclusion classroom I can say no matter what the district has labeled them, no 15 year old is normal. So we might as well ditch that word.

  22. "Let's just connect as two moms doing the best we can."

    To clearly express what you think and feel- and still leave the the door open for potential understanding and relationship...

    THAT is grace - a power that can change the world - one relationship at a time.

    THANK YOU for sharing this Ellen. All of it. You touched my heart and mind (again) today.

  23. Thanks for the support, all. If I'd known this mom a little better, I might have straight out said, "That was hurtful" or some such but I'd literally just met her. Which makes what she said even more of a "WHOA!"

    The stories you're sharing are mind-boggling; cluelessness abounds. I think there's an expectation that moms of kids who have special needs might be more sensitive, but clearly that's not always the case. Once, another mom of a kid with special needs said to me, "When Max talks someday, you'll get tired of listening to him!" And I said, "No, when Max talks I will NEVER get tired of listening to him." And she said, "Oh, yes you will!" And I said, "No, I will NOT. Because it will be a miracle to me each and every day." I couldn't believe she was arguing with me about that.

  24. Oh, Ellen, it will be so hard for you to talk to that mom again...what with her FOOT jammed so securely where her molars ought to be.

    I know you would never be this rude, but I would love to say to say to her, "See that tree over there? Compared to you, it has a heart! And MANNERS!"

    -Julia O'C

  25. With my son Billy, who has Down syndrome and is almost 56 years old, I've had my share of insensitive remarks like, "I bet he's sweet." I have learned to realize that such remarks derive from ignorance and lack of experience.

    My other children and I have learned to focus on who Billy is rather than what others think or say. Sometimes he dictates our blog and we write it in his language, which we have learned to celebrate.

    Billy's birthday is Saturday (a national event). Check out his language in our blog www.grownmannow.com and I think you will see what I mean. His sister posted this one.

    Celebrate your child!

  26. I am so sorry Ellen. It is hard to be so affected by something like that, that it fills your thoughts for days. I never have a quick come-back, my mind doesn't work swiftly enough. I am glad that you have this support network. Hugs...

  27. Hi Ellen,

    My son is a year old, and has global delays, and physical issues that mimic CP, caused by brain damage when he was born.

    Even after a year, I still get family members and friends, that see him and say, "His eye is a little lazy, but other than that he looks normal", or "His mouth droops on one side, but he looks normal".

    Many people have their own personal images of what they see as "normal", and many people have not had any relationships with children or adults with special needs. Alot of the time, people just don't know what to say, or how to act around a person with special needs.

    Perhaps this woman felt as though she did not want to insult you by comparing the level of care that you give Max, to the care that she has to provide to her son.

    Like when someone has a bad day at work, and they're complaining to you about it, only to stop and realize that yesterday your best friend just died in a car accident. WHOOPS!

    Perhaps she just chose her words poorly. Either way, try not to lose any sleep over it. Your Son is very handsome and he looks extremely happy! Take care, and GO MAX!


  28. This part rang so true to me: "... you wanted to connect about your son's issues yet at the same time confirm that, unlike me and my child, the two you do not inhabit Planet Special Needs."

    I do get the impression that a lot of moms want to bond over special-needs stuff, but only up to a point. (Like, "Whoa, mine isn't *THAT* special. Watch it!")

    It's lame and hurtful, but at the same time I remember being in denial myself. I'm not proud of the things I said or thought then either.

  29. In this context, the other mom's use of the word "normal" is utterly cringe-inducing. But my charitable view is that she was trying to be sensitive -- she was trying to say that she didn't want to insult you by saying your situations were exactly parallel. I know that when my dad was dying, I wanted to slap the daylights out of my mother-in-law, who kept comparing her husband's hip-replacement surgery to my dad's repeat emergency heart surgeries. THAT showed a lack of sensitivity; it was narcissism, implying that that she was in exactly the same boat as my mother. So: I think that other mom was trying to say "I realize in many ways you have a harder row to hoe, and I want to be sensitive to that even as I'm comparing stories and sharing my own experiences in the system." (Or hey, maybe she's just an insensitive dickwad.)

  30. I think I'd go with Marjorie on this one. Most of the hurt we've felt has been from people outside of 'planet special needs' who just don't see life as we do. In this case it does sound like she was trying to say 'my son has challenges which are slight compared to what you have to contend with and I admire you for what you achieve with your remarkable little boy.' Unfortunately it came out badly. 'Normal' is not a useful word in this context.

  31. I cannot believe she said that! Whatever happened to 'if you don't have anything nice to say don't say anything at all' anyway? Obviously she didn't put any thought into what came out of her mouth, and I hope she keeps her mouth SHUT if she sees you again!

  32. Wow, I'm so sorry someone said that to you.

    We've only been on our journey with Noah for a little one a year, and we've already heard so many crazy things. For instance there's the blood technician who when Noah was getting his blood drawn and found out he was born with Down syndrome looked at my wife and I and said,

    "So...which one of y'all give him the bad chromo."

    Yes, she said 'chromo.'

    I know my wife and I are upbeat, and laid back, and have a sense of humor, but come on. Noah was only a few weeks old, and we were still new to all of this.

    Some people just have no filter. I end up showing them grace (sometimes) since I know I also have so many things to learn, and need the same grace shown to me when I unintendedly say uneducated and hurtful things to others.

    It's not easy though. :)

    Thanks for all you do. You guys rok!

  33. I didn't know "Normal" was a kind of prize. I don't think special needs can be compared, as I once told my Mom that cerebral palsy should be called (insert person's name here) syndrome because it is so different for everyone.

  34. I once had a friend say, about my Max who has CP, " At least you don't have to worry about spending a lot of money on shoes like the rest of us do!"

    Now, that was a doozie!

  35. I have no words except...I'm sharing this post on Facebook because it makes so much sense to me.

  36. While I’m not a mom of “special needs” children, I am a Godmom & auntie to two beautiful children, one with Cerebral Palsy & Autism, the 2nd with Cerebral Palsy & profoundly deaf, that I am very involved with. They require an entirely different approach than my own two that have no "special needs”, but parenting is parenting. It’s LOTS of hard work no matter how they come to us AND there is no greater REWARD than being a parent. For years I was denied the pleasure.

    Now I’d like to offer another possible point of view to all of you in hopes we can all work toward leaving judgement behind us. You see I am a breast cancer patient, but because my course of treatment is less arduous than many women afflicted with this same disease, I feel guilty & find it hard to not express to them my sympathy for their having to endure more than myself. Reading this blog/post I have to ask myself…Have I offended anyone, when all I meant was to express admiration toward their full blown war against the disease? Has my guilt come off as judgement? MY answer, No! Life is 10% what happens to us & 90% how we CHOOSE to accept it.

    The Mom you are rushing to judge may well have intended her comment as ADMIRATION & ENCOURAGEMENT. Communication is the key! Why not ask someone what they meant, if something doesn’t sit well, rather than interpret it incorrectly and harbor ill feeling. My husband and I learned that little trick in marriage counseling. We cause ourselves a lot of grief by wrongly interpreting another’s words. The key to our happiness lies within ourselves. Happiness is a choice, not a state others grant us!

  37. im sorry that this mum hurt you. I really think it was a compassion comment as in realising that you and Max have a tougher road than she does, but its still hurtful. I'm not a mother yet, but my mum works with mentally special needs adults and i know a few personally too, but i think that no matter what the situation, if people just stopped complaining a lot of issues would be solved. (eg complaining about a bad day then realising the other person lost a friend as one commenter wrote, etc)...
    i love your blog Ellen and Max is AWESOME :) i love his smile :D
    p.s. ive recently watched 'Cars' for the 1st time and can totally understand his love for it... i watched it twice in couple days and could turn around and watch it again and again and again :P :D

  38. Similarly, when I tell people that my son has Asperger's, a frequent response I get is "Oh, that's the high-functioning kind, right? So it's not that big of a deal."

    For any parent of a child with special needs, we ought to remember that it's not a competition. Not a comparison contest. We struggle with how our child's particular difficulties affect the entire family. We shouldn't have to worry about whose life is harder, whose disability is more/less severe, etc. Rather, we should share knowing glances, provide support, and just enjoy one another.

  39. It was a rude thing to say.

  40. Wow......and you let her walk away on two unbroken legs?????? I do understand....during my last IEP one of the school staff said that my son was "highly trainable"....I had to let that comment slide, as I felt is was not a mean spirited thing, just bad filtering like "before it comes out of my mouth and hurts someone". Those comments are like small cuts on the heart, and they do hurt.

  41. My (former) Mrs. Kravitz-type neighbor sent me over the edge when, at a neighborhood party, she reported on the new family that just moved in and referred to their newborn child as 'deformed'. When I tried to subtly correct her and asked her to at least use the term 'special needs', she said "No, the child is really deformed. Terribly sad, isn't it?". So, I told her that if she ever referred to my (beautiful, red-haired, blue-eyed, special needs)child as 'deformed', I'd punch her. Her husband quickly escorted her home.

  42. My son has multiple disabilities and many challenges so I really understand your point and I have been hurt by similar words many times. I think often people don't know or don't think about what to say before the words come out. People often stumble over words when they are afraid they will sound like they are complaining about their kid's problems and they know your kid's problems are way more severe. When my son was still learning how to take his first steps at age 2.5, another Mom at the playground (whose same age child was running circles around us) said that we were "in different leagues." I think she meant that she couldn't begin to know what it's like to be in my shoes with all of my son's issues, but I remember being so upset, here I was standing there being so proud of his progress, and somehow her comments diminished that as if my son were less than hers, in a "lower league" because of his challenges. I have gotten better about letting this stuff roll off of me, especially the stares wherever we go. Otherwise I would walk around angry all the time.

  43. Thanks for writing this--very well written!

  44. Wow! Pretty hurtful. I know those encounters. We have heard it all...like..."Is that high functioning Down Syndrome or low functioning"? or the best ones are the yes no questions, Is your daughter walking yet? Is your daughter self feeding? Your daughter is not talking yet? Good for you that you actually want to try to meet this other mom again. We find that those friendships fade anyways and that other more supportive compassionate "non-mean" friends come to the surface. I totally understand and we can sympathize with your hurts. You are right in thinking that they are hurtful and mean because they are!


Thanks for sharing!