People who equate truth with fact are missing the point.

Dear People Who Do Not Have a Child With Disabilities…

I have yet to meet a parent of a child with disabilities who hasn’t heard a whole lot of nonsense from people who never intended to speak nonsense.

I’m not speaking here of the jerks, the people who say things intended to be mean. Those people are heartless and lost and bummer for them because how sad, to live in a world that has so little kindness in it. I’m talking about ordinary people, the well-meaning man at the grocery store, the group of friendly acquaintances at church, and even the best friends who, when face-to-face with the parent of a child with disabilities, don’t know what to say.

If I sound at all bitter anywhere here, I apologize. I have no high-horse on which I may stand. I said some of these things before I became a parent of a child with disabilities.

Any bitterness that comes through is only a result of the incomplete job I have done so far in letting go of the anger and disappointment that engulfed me in Carter’s early years. If someone had told me these things before I had Carter, I would have tried very hard to listen and learn, and I know that when I said these things I meant no harm. In fact, I believed I was helping.

With those caveats in mind, here is a long list of things we parents of kids with mental/emotional/social issues hear often and that hurt us, and a much shorter list of things that I wish I had heard back in the years when life was all crisis, all the time.

Triskele

What you said: God never gives us more than we can handle.

What we heard: You’re fine. Quit whining.

We’re not fine. Also, it is very dangerous to bring God into conversation with a person whose faith you don’t know intimately (and sometimes even then). We bring God to these conversations by bringing kindness. We bring God by seeing, hearing, and connecting.

No Points for Style

NB CarterWhat you said: He seems fine to me! Or, All kids do that!

What we heard: You are a very dramatic person and you should get over yourself. Also, you are very likely a huge liar.

If you said this to me now, I would raise my left eyebrow to you and make a mental note never to discuss anything related to Carter again. Back when I was in agony pretty much all the time, it was like being punched in the guts. It didn’t help that I heard it often. Carter was occasionally distracted from his incessant wailing by new surroundings, new faces, and especially fluorescent lighting. Plus, I rarely left the house unless he was at his best, so people heard my descriptions of a baby who cried hours and hours on end while said baby looked around from his perch in the sling in which I wore him.

Here is a good rule for all of us when we are talking to a person in pain: do not contradict. Even if the person you’re talking to seems to be completely full of crap, acknowledge the pain. See the person in front of you, because the person matters infinitely more than the facts, and this isn’t a courtroom. Even if I had been radically exaggerating the extent of Carter’s crying, I was in pain. Even if, as he got older, I was wildly overstating the rages, the migraines, the constipation, the sleep disorder, and the despondency of his depressions, my pain was real.

Triskele

What you said: You must be a very special parent for God to give you such a special child.

What we heard: We are fundamentally different. I’m not even going to try to understand you.

When I first heard this, I would imagine God sitting at a school desk with a paper in front of him, just like the worksheets we used to get when we were in elementary school. There would be a list of babies on the left and a list of parents on the right. God would draw a line from the most difficult baby to the strongest parent, then second most difficult to second strongest, etc. In my imagination, a dog (God loves dogs) comes bounding into the misty, ephemeral scene, distracts God, and oops! God sent the wrong baby to those wacky Joneses!

There was an accident, and the accident broke Carter’s brain. I don’t know why, but I know I’m not special, and I need you to see and hear me and my struggle.

Triskele

What you said: You are an angel! I could never do what you’re doing.

What we heard: Hey, sounds tough. What a bummer. It’s a good thing you can totally handle it and you don’t need anything from me!

Yes, you could handle it. The alternative is…what? It’s your kid. You handle it. Not with any grace or style (no points for those things, anyhow), but you just do. Ordinary you, ordinary me.

We aren’t different, we parents of special needs kids. I promise I’m just like you. I kick ass at some parts of parenting, and I’m lousy at other parts, and I’m very ordinary at most of it. You’d be horrified if you heard a group of parents of kids with issues like Carter’s talking amongst ourselves; we use gallows humor and and talk in ways we know would alienate you, and we are very un-angel-like. We are deeply angry sometimes. Wounded. Broken.

But if you come to us and say, hey, I’m in trouble, I have a kid with problems and I think I belong in your club, we will gather you into our circle so fast you won’t quite know what hit you. We will listen to you cry and we won’t tell you to stop. We won’t tell you to be strong because we know you are being exactly as strong as you can be. We know that your need is deep and that you can’t handle this, even as you are in the midst of handling it.

Triskele

What you said: Every child is a blessing.

What we heard: Suck it up, buttercup!

Carter&MomFirst, duh! Of course my child is a blessing. I love him like fire. That does not invalidate my pain. In fact, my love is causing my pain because if I didn’t love him, why would I even care?

This is the Italy/Holland/Sudan problem. In 1987, Emily Perl Kingsley wrote an essay (which every parent of a child with disabilities is contractually obligated to receive in his or her inbox a minimum of 40 times in the year following initial diagnosis) comparing having a child to taking a trip to Italy. You’re planning this lovely vacation in Italy, and if your child has disabilities, it’s like accidentally going to Holland, and it’s very different and you’re disappointed, but hooray! It turns out Holland is fabulous!

Our plane landed in Sudan, and Carter and my husband and our other children and I are dodging bullets, rapists, and starvation, praying to escape with our lives. Windmills and tulips and charming sidewalk cafes sound damn good from here. I don’t owe it to anybody to put a smile on my face and pretend my blessings are different, but just as wonderful. Yes, there are some things about Carter’s illness that have made me a better person, but I would trade it all in an instant if it meant that Carter could have his brain intact and my other children could have had a childhood that didn’t include all the crises that their brother brought with him into the world.

Triskele

What you said: Your faith will get your through! Or, God doesn’t bring us to it unless he plans to bring us through it! Or, With God all things are possible!

What we heard: You’re only having trouble because your faith is crappy and weak.

Here’s the deal: my faith did get me through, or rather, God did. I was more broken by the time Carter had his second birthday than I have ever revealed publicly, and I spent long, wakeful nights in the manner that is familiar to millions of people of faith: on my knees, the holy book of my tradition open in front of me, begging God for relief for me and my family and healing for my child. I told God that if we couldn’t have relief and healing, that I would very much like a carbon monoxide leak to take us all quietly in our sleep, and if that could be arranged while Jacob and Abbie were at their dad’s and Spencer was with his mom, then that would be infinitely preferable.

I am 90% convinced that if the house we lived in at that time had a garage, I wouldn’t be writing this to you now. The presence of God in the universe doesn’t let people of faith off the hook and platitudes like this don’t help anyone except the person who says them. Glib sayings about faith are all well and good when life is swell and the sun is shining. People who are suffering need something more substantial. If you are a person of faith, we need you to live that faith by caring for us and hearing how we’re struggling.

Triskele

What you asked: Did you take medicine while you were pregnant?

What we heard: How did you cause this?

This was a question someone asked me while Carter was a toddler, screaming and fretting through his second year of life. What I know now is, when people ask me questions designed to figure out how I caused Carter’s various disabilities and issues, they are really saying, this would never happen to me. And while I want to reassure you that it probably won’t happen to you, it could. Yes, you. You, who give money to charity and always wear your seatbelt and feed your family organic foods and are a very nice person who never kicked a puppy. I know that it is very, very painful to live in a world of uncertainty and fear because I live on a cliff every minute, but there are no guarantees in this life. We don’t have (will never have) answers to questions like why this childWhy our family? There are no answers to those questions, or at least none to which we have access during this lifetime.

There are dozens of variations of this question, all of them probing for a cause, seeking to lay blame on the feet of that traditional whipping post, dear old mom. When he was a baby, my friends who practiced natural and attachment parenting thought I wasn’t doing natural and attachment parenting hard enough (A baby whose needs are met won’t cry! Pfffffffft. Suck it, Dr. Sears.). My friends who practiced more conventional parenting thought I was spoiling Carter by nursing and carrying him so much. No matter which way I turned, someone assumed it was my fault, as if I wasn’t already trapped in a giant web of self-doubt and recrimination. I tried to give him away to foster care (Thank God Brian stopped me because I really do love that kid.) because I was sure he needed a better mother.

As he got older, people gave me books about discipline and my father-in-law offered to take Carter for two weeks to make him shape up. Do not succumb to this temptation. Ordinary, fallible parents do not cause serious disabilities in their children. We have not traumatized them into their problems by being human. Resist the impulse to make assumptions about a child’s parents based on that child’s behavior.

The world is uncertain and sometimes horrible, even here in middle class America where the grocery stores overflow with food and the roads are paved and talk radio churns its way ever forward. Crappy things happen to perfectly ordinary people, and most of the time there is no one and nothing to blame. It’s lousy and it feels horribly unfair; nevertheless, it’s the truth.

Triskele

One note underlies all of these statements, and it is this: Please be quiet. You don’t mean to say that, but platitudes are conversation stoppers, and when we hear them, we hear you begging us, please don’t show me this anguish because I can’t bear it. I don’t know what to do and if you would be quiet I would be much more comfortable. I’m telling you this because I think most people don’t want to be saying that, but what is there to do? A friend (or family member, or acquaintance, or stranger) is in pain, and what am I to do? I don’t understand this. It’s scary. It’s weird. It’s so other you might as well be beaming me a message from Planet Zergon.

I’m going to tell you. Here is your map.

  • Listen. Just listen. Open yourself up. Yes, it hurts and it’s very scary. That’s OK. There is a person in front of you who is in pain. Don’t leave her alone with it.
  • Know that you can’t fix it. Don’t try. We have doctors and therapists and other professionals for treatment. Also, that diet/book/supplement you heard about that can cure all the problems? We’ve heard of it already. We’re on the internet while you sleep, and anyway, 26 of our Facebook friends already sent us the link.
  •  Acknowledge and affirm. Say, wow, that sounds hard. Say, oh, my God, how painful! Say, I hate that it’s so difficult for you.
  • Treat our kids the same way you treat other children in your life. Of course you should be sensitive, especially with kids who have emotional/social/behavioral issues, because many of them don’t want to be touched or may not be verbal, but in general, if you usually engage kids in conversation, do that with our kids too. Say hello. Smile. They might not respond predictably, if they respond at all, but they see you. 
  • Offer to help, but only if you mean it (people in pain are sensitive; we know when you’re saying words you don’t mean so you can feel good about yourself). My mom sometimes came to my house and gathered all my laundry baskets and every scrap of dirty laundry in the house (which completely filled the trunk of her car) and brought it all back a day or two later, clean and folded. Our friends from church occasionally brought us meals. A friend drove Carter and me to some of his appointments during the worst months because I didn’t feel safe driving alone with him. Those things meant the world to me. As much as I appreciated the clean clothes, meals, and rides, I was even more grateful to feel a little less alone in the world.
  • Send a note, a text, or an email. Parenting a child with special needs can be profoundly lonely. It’s also hectic and chaotic and we may not respond to you, but do it anyway. The world starts to feel very far away when life is all appointments, crisis, chaos, and praying for survival. Stay connected, even if it feels one-sided.
  • If you’re very close, spend a little time learning about your friend’s child’s diagnosis. There is no need to become an expert, but an evening spent learning will only make you a better listener. If you don’t know what to read, your friend will gladly tell you. 
  • Keep listening. Just show up and listen. There’s nothing any person in pain needs more. 
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447 comments to Dear People Who Do Not Have a Child With Disabilities…

  • Serena

    What I hear is “what’s wrong with your child?” I reply “What’s wrong with your manners?” This usually shuts them up. The worst was when I was at the Muscular Dystrophy Labor Day telethon, where people should know better: “How do manage the guilt of bringing that child into the world?” Hey, I didn’t sign up for this. And I am PROLIFE, and quite frankly, I wish your mom wasn’t, you insensitive jerk.

    Of course, I didn’t say those things although I really wanted to, but would it have helped? No.

    • How do you manage the GUILT??? Wow. That takes some chutzpah to say something like that. I have felt tons of guilt sometimes (totally unfounded because what am I, a person who reads the future?), but nobody needs to assume that for me. Ugh.

  • What a beautifully written piece. It brought tears to my eyes and definitely painted an accurate picture.

  • Oline Wright

    I’m sorry for the pain we unknowingly inflict on you. It is unfortunate that all to often that we internalize negative feelings about ourselves. I looked at your what you said and what we heard list and I realized that it is probable that platitudes should not be used to anyone because by the very fact that they are what they are they ring false.
    I do however like your suggestions for dealing with people who have children with disabilities. Do be prepared that people will ask as Serena said What’s wrong with your child? often it may be an offer to let you tell your story and get some release of tension and frustration.

    • Serena

      Actually they WERE being cruel. I tell them all about it if they actually would like to know. Yep. I am a little frustrated today, dealing with my two dual-diagnosed children, (and I lost one between the two I have). I’m feeling low. Please pray for me— I am having surgery soon, and the aesthetic could cause Malignant hyperthermia, and I could die on the table. (or die from this medical condition). Sorry to vent.

      • Oline Wright

        I will be happy to pry for you Serena. and if you use facebook and need to vent please feel free to look my name up there and contact me. I try not to judge and generally am someone who will lend a willing ear to someone in need of venting.

    • Oline, thank you, and yes, I think platitudes are best skipped. A genuine word of kindness is always better.

  • Louise

    Rabbi Harold Kushner, of “When Bad Things Happen to Good People”, said the following: “When someone has had something horrible happen in their life, they don’t want to hear ‘It’s God’s will’, or ‘You’ll have other children’, or ‘He’s better off in heaven now’. Here’s what you say, ‘I’m really sorry this has happened to you’. Now here’s the important part, Shut Up! They don’t want to hear about your story, or how your cousin coped, or how much harder other people in the world have it. Just Shut Up. If the person wants to talk, your job is to listen. If they want to sit in silence, then you hold their hand and sit in silence. Your job is just to be there for them.”
    The other part of his message was not to offer help, just do it. Like your mom came and collected the laundry. Bring meals. Take other kids in the family out for a movie and ice cream. Bring earplugs and walk the screaming baby around the neighborhood so that the mom can have a bath and a nap. Have one friend take mom and baby to a doctor’s appointment while you stay at the house and supervise a cleaning crew. The “call me if you need anything” puts the onus on the already overwhelmed parent.

    • Yes, you’re so right. People sometimes said, “Call me if I can do anything,” and I do know that they were sincere, but I couldn’t ask. I would have felt horrible calling someone and asking them to come swamp my filthy bathrooms, and I would have been SO GRATEFUL if someone had just showed up to do it.

      I haven’t read Rabbi Harold Kushner’s book, though I’ve heard of it. I think I’ll pick up a copy because he sounds like my kind of guy. Thanks!

      • Barbara Carlson

        I felt the same way when I was practically living at the hospital. People wanted to help, they asked me to call if I needed help, but I couldn’t think ahead or plan or organize. I’m still having that problem to a certain extent. Because my son is doing pretty well (he isn’t at risk of dying), people seem to think everything is okay now. Well, no, not really. My house is filthy. I’m too embarrassed to even try to hire someone to clean it.

        • Gail Finke

          Ask someone for help? I don’t even know how, because most of the time I don’t know what I need. Sometimes the laundry is a mountain, sometimes it’s not. Ditto everything else. It’s hard to ask for help when you are overwhelmed. But that is very good advice for someone who wants to help — just pick something you are good at and do it!

          • Barbara Carlson

            I tried once and the reply I got was “I have my own house to clean”. People are happy to help during an emergency, but not so much for the long haul. Some of my friends won’t even answer the phone when I call (boy does that hurt). I don’t even ask for help, but apparently just hearing about things upsets them.

  • Suzy

    You have completely captured the pain and frustration that we feel. My son has profound cerebral palsy, severe epilepsy and is cortically blind (to name a few of his diagnosis). When he was itty bitty young I would take him out to run errands with me. He would be hunkered down in his tiny wheelchair. He hated the fluorescent lights in the store, so he would always close his eyes. Well meaning people, usually the little old ladies with their tag-along retired husbands would always approach and try to interact. I know they were only trying to be nice, but they ALWAYS said the same thing… “Aww, he’s sleeping.” I would think to my self, “No, he’s freakin’ blind you idiot!” It just rubbed me wrong. They were being nice, but didn’t understand my pain.
    Thank you for putting my feelings so eloquently into words.
    My son is now 14. People are more afraid to approach him now. That hurts too.

  • Maree

    Two of my pet hates:
    1. Oh, but you look so good.
    2. Focus on your abilities not your disabilities.

    Both insulting and implying that your perception of the disabilities is negatively skewed and incorrect.

  • Oh, people. People just…I don’t know. WHY do people insert themselves? WHY do people think they know best outside of situations directly related to them? Why? Why do the people who DON’T do this seem to be the only ones who don’t overstep the line of stupidity?

    • Sula Anne

      Arnebya’s comment underscores just what I was thinking, although perhaps unintentionally. I came across this blog as someone I know posted the link on facebook. I read it because I have an adult child with a disability. I’ve been doing this for a long time. And my question to the author of this bright and insightful blog is this:

      When did you and I talk about how I feel so that you have the authority to speak for me? You have written this as though it were meant to represent and speak for all parents raising disabled children. You do not have my permission to tell the story as though you are including my story. That is mine to tell and we have different experiences. Please edit your well written article to be more intellectually honest and respectful of others whose story you do not know. I suggest a change in wording from “What you said” and “What WE heard” to: “What you said” and “What I heard”.

      I expect that you chose to speak for ALL of us who share your parenting community in order to lend more weight and credibility to your blog. Speaking for only yourself is a risk because people may choose to simply ignore. But if you speak with the authority of “we” as a representative, then people are more likely to listen. Perhaps something like “What Some of Us Heard”.

      My experiences are different from your own. And now, thanks to your “WE”, I have people who I know on facebook assuming that the feelings you have written are my feelings.

      I don’t appreciate that. I promise that I will not presume to speak for you, if you please stop speaking for me.

  • Wow this peice hit home today. I think I have heard it all over the years. Anything I do that is not mainstream enough must be the reason my kids have “issues”. Hey did you know public school will cure all that ails you? The bit about Italy/Holland/Sudan had be let out a laugh (but it bordered on hysteria). I am right there in the Sudan with you, and didn’t sleep last night thanks to once again up searching for ways to help my kids so they can finally stop living in a war zone created by my oldest son’s disabilities. And if one more person tells me he is just fine to them, or would never dare to act that way with them, there may suddenly be news headlines of “mom of disabled child arrested for pummling person with their own left arm” Seriously, do they not get they may as well point a finger and say “it’s all your fault!”

    Thank you for the well written peice.

  • Anonymous

    I am among those that disagree with this article. My son has no clear-cut diagnosis either. He has neurological issues and all the accompanying CP issues that go along with that. He is cognitively delayed, physically challenged, and oh, yeah, he’s deaf too. But he’s frickin’ amazing!

    In 9 1/2 years I’ve only come across one person that really ticked me off to the point of tears and that person was in a Walmart (shocker!) and was intentionally being cruel.

    I do agree about leaving God out of it. My level of faith and spirituality is a private matter but no matter what it is, I will never believe that God sits around choosing babies to give disabilities to. It is what it is. God has nothing to do with it. But even if someone were to make a “God” comment to me, I would never hear “quit whining”. It is their coping mechanism for things they struggle with and nothing more than that. They use that as a blanket statement for everything, to everyone when times are tough.

    If they say “all kids do that” – in my mind what I hear is them trying to assure me that maybe I don’t need to worry myself silly over every delayed milestone and every behavioral abnormality and think that my kid is a freak who will never “get it.” That even typical kids have some forms of the same issues my kid does and so therefore if my child does something odd, a lot of other typical kids are also doing odd things too. Yes my child has special needs, but try not to feel too alone. I don’t take it as a denial or disbelief in any way.

    If someone wants to call me an angel, hell, I’ll take it. Do I think I’m an angel? Absolutely not. Not a day goes by that I don’t feel like I should be doing more for my son and not a day goes by that I feel like he deserves a better parent than me. But I know I am trying really hard. And I know I would do absolutely anything for him and I know my love and support for him is unconditional and if someone thinks I am an angel for what I do and for the different ways in which we have to accommodate our lives in support of him – heck I’ll take it. I also am smart enough to know that nobody’s life is perfect. I know that just because I am a parent of a special needs child, it doesn’t mean I am any better than the parent in a “picture perfect” family. But sometimes it feels that way so if you want to pay me a complement, that’s all I see it as.

    When they say all children are a blessing – that’s all they mean. Plain and simple. Why take it as anything other than that? It’s true, right?

    And if they ask about medications or how/why did this happen? It’s only to gain a better understanding. Maybe this happened for a reason and they’d like to know and understand it. Maybe it didn’t. Maybe it just happened. All they are asking is “is there any medical explanation for it?”. It is not an accusatory statement. It is just someone wanting to gain a fuller understanding so that they can be more informed.

    The replies mentioned under ‘acknowledge and affirm’ just sound more like “offer me pity” to be frank. I don’t need you to say “wow, that must suck”. I know it sucks sometimes – you don’t need to agree with me and help me wallow in my sorrow. Smile and do your best to say something positive. I have no shortage of sleepless nights where I lay awake and worry about my shortcomings and my son’s struggles now and in the future. I don’t need you to agree and remind me of it in the middle of the day as well.

    I guess I don’t choose to find negativity in so many people’s statements when they mean well. You KNOW they mean well so really it lies in how YOU perceive it. I don’t take pity on myself or my family. I know my friends and acquaintances and even (most) strangers don’t either so I don’t receive their comments that way. I also enjoy the Holland essay. I forwarded it to many people the first time I read it.

    In regards to people asking the question “what’s wrong with him?” – heck it wasn’t until my son was in pre-school that I even knew how people asked that question. I was around 36 or 37 then and I realized people ask “what is his diagnosis?” – that that is probably the most PC way to ask. But I didn’t know up until that point. And I had to tell my Mom because she didn’t know how to ask that question either. Most people don’t.

    I think I have no time to be angry and bitter and hear the worst in people’s comments. The people in my life and my community have all been amazing and I choose to take their comments in a positive light. It’s the people who say nothing at all to me when my son is noticed or mentioned that I might take the most issue with. I’d rather talk about my son with you and have you possibly say something “awkward” than to just look and him, at me, and say nothing at all and just walk away.

    • Sula Anne

      Thanks Anonymous. I said my piece above, in response to an earlier comment. But wanted to post a thank you here in hopes that my appreciation and agreement get back to you. Meaning no disrespect to the author of this blog, but some of us are really excluded by her “we”.

      • Anonymous

        Thank you Sula Anne. I admit I had been skimming the responses earlier and didn’t see yours but I went back and read it. Thank you for pointing out to the author that she does not speak for all parents of children with special needs. She is not WE. Thank you.

        • Sula Ann and Anonymous, I agree with you and would add to this discussion this thought: it is blogs like this and comments like the ones we see following the article that perpetuate the societal view from the “typical” community that we are to be pitied. First of all take the religious component completely out of this debate, it has no place. Your child (my child) has a chromosomal disorder, mental issue, physical issue etc. that was caused by genes, cells, chromosomes, biology, or an accident. You can recoil and retreat, or you can face the many and varied challenges life throws at you head on, your choice.

          When the disability community, of which I am a part of as a father of child with Down syndrome, start telling people that their attempts at reaching out to us are not welcomed because we don’t like the way they are presented and “what WE hear…” is “you are fine” and “being dramatic” etc. Guess what, they are right!!! You are fine. My kid has Down syndrome. News flash, not the end of the world for me and most importantly for him. He is doing great. He is loved.

          I hate to do it parents on this blog, but I am about to give away (since this piece is speaking for everyone) OUR dirty little secret: Our lives, as parents of kids with disabilities, are only as miserable as we allow them to be. You, the typical person don’t make us angry, sad, or happy. We control that ourselves. Our lives really aren’t that bad. We just like to play that sympathy card and have you believe we are all martyrs for doing what you would do for your child as well.

          And to the comment that we are “different”- darn right we are! We all are. Embrace it and move on with life. Or, you can stay on the countless blogs feeling sorry for yourself, that should pass the time for you. Until then, suck it up buttercup.

          • steve krausz

            CA father. You sound a little smug. I also have two kids with Down syndrome, and they are easy compared to many of the disabilities that parents are talking about here – kids who can’t talk, kids who scream for hours on end, kids who kick, pinch, bite, etc, kids who spend more time in the hospital than at home. I’m glad that you control your life, but this blog is there for those parents whose situations are so difficult that they feel that they don’t control their lives despite all their sincerest attempts to do so.

          • Barbara Carlson

            CA Father said: ” Our lives, as parents of kids with disabilities, are only as miserable as we allow them to be. ”

            I understand what you’re saying, but it does not acknowledge dealing with a child that you love, screaming and trying to hurt you and himself, for hours and hours … giving you no time to eat, sleep, use the restroom, etc.

            How miserable would you allow yourself to be if you hadn’t slept more than 4 in 48 hours? How could you be happy and calm and stable in that condition?

            Saying you can do it (it’s easy!) tells the others who can’t that they must (a) WANT to be exhausted and frightened and (b) really are too dumb to figure out how to get to your level of zen.

            You have never been unsure, frightened for your child, weary, angry at red tape, disappointed, etc? Really?

            • Each of us, whether we have a child with a disability or a typical child, has our own set of issues to deal with on a daily basis. Some, admittedly, are more complex than others. But, again, I stress; you can either let all that is thrown at you drag you down and OWN YOU, or you can wrestle your life back and OWN IT. The choice remains yours.

              My “level of Zen” is what I call reality. My son has a disability, it is accompanied by some challenges. I am powerless to change his diagnosis. I accept that and move forward with life. Complaining about it and attacking those in society that make attempts to understand my situation by asking questions, or comments like the “What You Say…” is counterproductive. It only serves to make the situation worse and as so many have pointed out on this blog, who among us needs more to fret over and get upset about, not me.

              Have I been unsure, frightened, angry, etc. You betcha’ and I will again. And when those feelings arise, I will control them, OWN THEM, not the other way around. Most importantly for ME, I choose to focus on the positive. I loved today and if tomorrow comes, well, we will just have to see what it brings, but good or bad, I carry on. Best of luck to everyone here, nobody said parenting (any child) would ever be easy. We do the best we can.

              • Anonymous

                CA Father – I personally really liked your statements. We do control our own emotions and perceptions of others’ comments.

                I think everyone agrees that parenting a child with special needs can be indescribably difficult and challenging and we all want to fall apart once in a while. The fact that I disagreed with the author’s original blog does not change or undermine that. It seems as though the people who agree with the author, and therefore disagree with me, keep saying “it is hard. it is painful. we struggle.” YES! absolutely. All of the above. I never said we don’t.

                But that’s not the point of the original blog. All that has gotten lost here in the comments. The original blog states that nearly every well-intended comment is heard by the proverbial “us” with a negative underlying meaning and I’m sorry but that just is NOT true! Accept that life is now challenging but choose to hear the positivity in people that mean well. You’ll be surprised at how much better you’ll end up feeling.

                Suck it up, buttercup. Well said.

              • I was writing a carefully crafted answer to this, but I’m just tired. I’m at the psych ER with my dear friend right now. Her 9 year old daughter had a psychotic break this evening and ran off, shoeless, her thinking totally disorganized. She was knocking on doors, asking people, “Is this my home?” My husband, my teenaged son, and I, plus dozens of cops and a couple of police helicopters finally found her, a mile away from home. This is what passes as “some challenges” when there is a child with severe mental illness in the family.

                But hey, I’ll pass along the message to my friend that she’s exactly as happy as she chooses to be! In fact, I’ll be sure to tell her that nobody promised her a rose garden because gosh, it’s all a matter of good attitude! No one is unaware of the positive; thank God she is alive, that there wasn’t a molester or kidnapper behind any of the doors on which she knocked; that she stayed out of the major street we found her just 50 feet away from. That doesn’t mean tonight wasn’t profoundly traumatic, and it will continue to be traumatic because she isn’t safe. She’s too sick to be safe.

                Sheesh. Please, disregard everything I have written here (no, really, start disregarding) and support the people in your life in any way you see fit. My website (any website, book, article, TV show, or whatever) doesn’t have the power to change you or anyone else unless you want that. So please, change nothing and go on with your life that has “some challenges.” We’ll be over here trying to help each other by listening to each other and trying to understand how we can help.

                (BTW, when someone said to my friend this evening, “You should turn her over to the state so they can put her in an institution,” should she try hard to see the positive in that? The person who said it did, in fact, mean well, and that’s what matters, right? So she should probably thank her for encouraging her to abandon her child, yes?)

    • AKmom

      Anonymous August 15th at 8 a.m. – I liked the author’s article because it reminded me that 1) tact is something I need to keep working at, and 2) we are all at different stages of personal growth with our individual experiences. While the majority of people probably agree that it is preferable to see the good in the world, it’s also normal and OK to feel overwhelmed and at a loss and just angry when life throws curve balls we weren’t expecting. I’ve been through those emotions and still go through them…depends on the day and many changing factors. I do have faith in God and draw strength from my beliefs, but I still struggle greatly with the coping part in the midst of difficulties. I liked hearing the author’s true feelings because I could relate in so many ways and that makes me feel less alone in my struggles. At the same time, I also felt that some perceptions of others’ underlying meanings may reflect a fear of judgment that could hinder a person’s ability to draw strength from seeing more of the positives around us. I liked your thoughts on how to use our conscious power of choice to assume better of people’s intentions (whether it’s true or not). I need the sunshine when I’m feeling stuck in a dark fog, even if it hurts my eyes for a time. Thank you both for opening up with your points of view.

  • Barbara

    We adopted a child with Fetal Alcohol Spectrum Disorder, who also has ADHD, Sensory Processing Disorder and Reactive Attachment Disorder. She is 7. We woke up this morning and within twenty minutes we hit the war zone, with screaming and physical attacks that went on for a very long 15 minutes. We have heard all kinds of things from people, some highly offensive. We are told we cannot continue to raise her, because as she gets older she will be worse. As if we should dump her somewhere and walk away. The worst are those that don’t get the diagnosis, and tell us she needs more discipline/punishment, as if that would cure brain damage, implying it’s my fault and I’m a bad parent. The best support I have found is other online moms – without them I would be so isolated. Thank you for this well written and expressive blog. What would be most welcome by me is stop by and show some interest in my child, it really does take a village in her case and right now we are mostly alone.

  • I wish I could spread this article to the world. My 10 year old daughter was diagnosed with a rare occlusive brain disorder after suffering from several strokes. She underwent brain surgery 8 months ago. I have heard everything you said, and felt all the emotions that go with it. We have dealt with ignorance and rudeness and even envy – we live in a very small town and my daughter has been featured in the paper, on the radio, and was interviewed on tv and people have been jealous of the attention she has received. As if having a brain disorder to get this attention made it worthwhile.

    I hope this blog goes viral so people can stop doing what they have been doing. Because, if I get one more hate mail, one more “friend” who tells me they miss “Fun Andrea (who I used to be before my daughter was diagnosed), or argues with me about our struggle because, in their esteemed opinion, my daughter seems “fine” – you will see me on the news for stabbing someone with a rusty fork. 🙂

    Thank you showing me I am not alone.

  • Peggy

    Well done – very well done. Thank you for expressing your thoughts for the rest of us who are parents of a child with disabilities.

  • Starfall

    As an adult with a serious physical disability and a parent of a child with a cognitive disability, I have to say that I disagree with your statements but respect your right to feel that way. Just don’t assume that ALL parents of disabled children or people with disabilities are that angry and negative all the time. Most of us get over it and get on with our lives. I have never rolled away from someone without acknowledging the other person, even if he just said some platitude I heard a million times before, because that would be rude. I hold myself to higher standards of conduct, and just maybe by smiling and explaining things, I just made that person’s life a little better. I don’t get angry when people hold the door for me, even though I can open it myself, and here’s why: there is so little kindness in the world today that I embrace anyone’s attempt at it. Why respond with anger when someone is attempting to make a connection? No wonder some people are tongue-tied when they see my son and I at the mall – they were probably yelled at by one of the people who responded so warmly to the original poster’s anger and negativity.

  • Laura

    I know, its my 2nd time writing in, but I’ve been glued to this comment thread, read your article 4 times since yesterday, shared it with everyone I can think to. I hope it keeps going viral because it is really, really good. The comments are good, hearing that someone laughed, or breathed, or cried (me included in all) was good. The people that have reacted angry and thought the writer said we all think people should shut up and walk away, I hope they stick around long enough to understand and reread the article and comments to learn through those emotions.

    At 10 days old my daughter went into the hospital-they thought she was having organ failure. She spent a few months on heavy meds and got her medical diagnosis’s. On the day she went into the hospital, I called my parents to tell them what happened, and in that phone call I was told my dad had 6 months to live, dyeing of cancer. My husband and I were told she will not survive the first year, and if she did survive, she would be profoundly physically, mentally and emotionally retarded. My husband was military and away an extraordinary amount of time, more than usual with a military job. I spent 8 long years in darkness and so did he. It took 8 long years to admit he spent them in darkness as much as me. I was home, alone, living in hell, and he wasn’t allowed to be home, he had to work; he lived in hell trying to work and defend his country, wondering if he’ll make it back before she dies or I fall apart. I hated more than I ever could hate then. Pain and darkness. I do not like knowing others go through that pain and darkness. It’s horrible.

    People told me all kinds of things, there’s nothing wrong with her she looks fine, demons did this, the medical stuff is all demons and Satan, it isn’t real. God meant for this to happen to teach me a lesson, asking if I drank alcohol, is that what happened, and all the other stuff Adrienne said too. I shut everyone out and tried to get through the darkness everyday. Then I was told I was severely depressed and should take depression meds and that would help me. Really? Okay if someone is taking them though, that’s okay, but really? That wasn’t fixing what happened in our child. I’ve seen so many counselors, and they all say, it’s VERY HARD stuff to handle, and I’m not crazy, and I am talking it out.

    My daughter is 11 years old now and should be in 6th grade. She ‘looks like’ happiness & cuteness runs in her veins. Behind the scenes, nearly no one knows that she is at a grade 1 for math, a grade 2-3 for language arts, but can train your dog in 1 day, no kidding. She has two chromosome disorders that can give her cancer and leukemia. This leukemia can happen any time, any day as she grows up. So can everything else I write below.

    Her 5 year old friend with 1 same disorder as my daughter, went in for a routine echo heart check a few weeks ago, they found a tumor and is in the hospital with neuroblastoma cancer. My daughter went in a week later for a routine heart check and they saw spots on her liver. Waited a week and a half to see that there’s nothing there. Because I know SO MUCH about her medical because that is a part of my life knowing what to ask and look for, they checked every organ everywhere and looked for me. There was nothing there. I mean, thank gosh, but, I get to wait for the day OR NOT that it happens. It’s very real for us. It can happen or it won’t.

    If she doesn’t get cancer or leukemia, I still have to spend my days making sure I either ward off as long as possible and manage the diabetes, heart, kidney, hearing, IBS, Celiac, Mild Tourette’s, social interactions. 11 DOCTORS and it has taken 11 YEARS to convince that I’m not a hypochondriac, just ‘doing my job’ as a mom. Now they email and we talk about all of it, with open communications finally.

    An entire friendship circle that I have worked hard mentally to be social in, I have to be careful who I say what too, because they don’t know the whole picture, They say stupid things. They’re worried about their daughter not getting 1st in the class or an award, or talk about all their money. Every morsel of money I’ve drained each month to eat non-gmo, organic foods to ward off things mentioned above, which isn’t even a guarantee.

    The MOST COMFORT that I have, is, seriously: My husband and I are still married, incredibly enough, and we relearned to call each other lover again. My closest friends are online or in medical groups. For a hobbie, I lead a medical support group so I can reach out to others and hope that they don’t feel as alone and dark as I did those 8 long first years.

    I hope the ones who are irritated and defensive in the comments will just listen please.

    I wrote a book here, but I want to share one more thing. I went to the dog park yesterday, and as a lady showed up, the tables at the park cleared out and people went home. I thought that was quick. I said hi and that I hadn’t seen her for months. She said, she’s dyeing of cancer. She has a few months to live. She’s the sole caretaker of her granddaughter, and that the parents have nothing to do with them. I was stunned. And then I just cried with her, told her about my daughter some and said I see it is so painful. Then I asked questions, and she said it was good to at least talk to someone. Then we talked about the fantastic weather we’ve had and how it was a great day and the dogs are playing so great together. Sometimes people need to talk, and we need to feel and not hide away.

    • Laura, thank you. Thank you. There’s just…I guess there’s nothing in the world like the connection, when you hear from a person who is speaking your own language. The specters in our potential future are suicide, prison, and catatonia, and even though yours are very different, we live with those cloudy, terrifying futures, and that creates something. It separates us from others, but it connects us to each other. We get intimate with vulnerability in ways nobody wants to be, but then we get to be intimate with each other, the way you were with that woman in the park, and that’s the gift part. It’s the other side of the horror, and I’d STILL trade it all in an instant, but that doesn’t mean it isn’t a gift.

      Thank you for taking the time to write this. And I, too, hope the people who are defensive will hear. The good news is, many more people have said they hear and understand than have told me to shut up and go away, so that’s good. I’d like to think that some loving, kind interactions will happen in the future that might not have otherwise.

      I hope that this day is quiet and happy for you, and utterly uneventful, with no crises on the horizon.

  • Anonymous

    All the people who criticise are missing the point. I get that we don’t like being put in the same proverbial box but I do understand the pain. The reason for a blog isn’t necessarily to enlighten or speak for everyone, the thought is to get the message out.
    I admire your courage. I have also been told some “well meaning nonsense”, beautiful religious platitudes and then the medical advise that our hoard of Doctors couldn’t possibly have come up with. I am lucky in that I have accepted and am no longer negative but in the same breath, the pain does not go away.
    Like I said, I don’t agree with the entire blog but I wish I had courage to say what I am thinking instead of always smiling sweetly and allowing people who know nothing of my situation or my son, to judge me or my son. I understand that it is not mature or polite to vent every thought but if anything I hope that this blog gets people thinking. Yes our children are different but we are still loving, dedicated parents, same as everyone else. We want the best for our children just like you do. I get up every morning and do what millions of moms do, it just sometimes takes longer and a little more patience. Remember, I also get tired, I also have a job and cooking and cleaning duties. When the sun sets we all have our own challenges, mine are different but I will not have grandchildren, my son will not get married and I will remain a mom until I die and have to put people in place to offer the same comfort and love that I did.

  • wes

    I have struggled with this article. After having read it over a few times, considered my own experience working with a multitude of people and children with a multitude of issues and pouring over the comments left by those here, I can only come to 3 conclusions:

    1. No matter what I say, it will be the wrong thing

    2. If I try and engage you, no matter how, you wish I didn’t as you feel its condescending and patronizing and how could I ever possibly understand.

    3. If I ignore you because now I’ve been told countless times by countless people here that I’m going to say the wrong thing no matter how hard I try, that’s just as bad.

    No win for either of us.

    • Barbara Carlson

      Louise quoted this, “Rabbi Harold Kushner, of “When Bad Things Happen to Good People”, said the following: “When someone has had something horrible happen in their life, they don’t want to hear ‘It’s God’s will’, or ‘You’ll have other children’, or ‘He’s better off in heaven now’. Here’s what you say, ‘I’m really sorry this has happened to you’. Now here’s the important part, Shut Up! They don’t want to hear about your story, or how your cousin coped, or how much harder other people in the world have it. Just Shut Up. If the person wants to talk, your job is to listen. If they want to sit in silence, then you hold their hand and sit in silence. Your job is just to be there for them.”

      I think it’s good advice. “I’m sorry” and let the other person talk. I think that’s a good rule of thumb.

    • steve krausz

      No, there are many things you can say that are the right thing: How are you? How are things going? or similar things you might say to any acquaintance, then wait for the answer. Adrienne then says: Listen. Acknowledge. Affirm. You can show that you care or are interested about someone and how they are doing without asking intrusive questions, suggesting that they don’t understand their kid, his/her condition, how to parent, etc. You can simply be friendly!

    • Anonymous

      wes-all I want to say about your 3 conclusions is: No, No, and No.

      You can talk to “me”. You can talk to “us”. If the author can speak as “we”, then so can I. Don’t take her words as being representative of every parent of a child with special needs. I will always appreciate your effort and interest.

      • Anonymous

        With appreciation to Barbara, Steve and Anon, and others who have offered their non-judgemental reponses, I appreciate your gentle suggestions and will take what you’ve offered to heart. Of course one voice does not speak for an entire community, but to see the opinion of the majority of readers here gives the reader some idea of what dynamic they are stepping into, trying to get to know your community. To those condemning and judging your neighbours and park-mates and Walmarters, assuming “we” are there to tell you how to ‘do it better’, I sincerely hope you are able to meet more folks who really just want to get to know you and your kids, and who would like to find a way to connect beyond a superficial discussion about how the weather is. They are out there. They are just trying to understand your situation a little bit better so they can be a better friend and not say hurtful things unknowingly.

  • This is my second response, but I wanted to comment again to the others posting. I am one that responded not only in that the article really hit home for me but also in an “angry” manner (which is actually more frustrated than angry in reality) about interactions with outsiders. First in regards to the article, I see nothing wrong with her using WE, no she doesn’t speak for everyone but she is speaking for many and therefore a WE, not if she said ALL that would be an issue. There are plenty of articles out there that use WE in reference to moms for example that don’t speak to the experience of all moms but no one gets up in arms about it. Then again I speak with a royal WE here, meaning I am a single mom but when writing or speaking about experiences or decisions I often say we.

    As for my other thoughts on this. There has been many comments about people just trying to engage or feeling they can’t now. Those of us that spoke to the truth of the article in our lives I am sure are not speaking of general connections etc. I know at least I am not. If someone wants to ask my about my kids I can regale them for hours, but ask about the whole child not just their diagnosis. That is frustrating as a mom because they are more than that label. Don’t try to sell me on every snake oil cure you have heard of or sell as your p/t from home business. For me the part that is most frustrating and that this article brought home for me is the comments about the child being just fine, or needing more discipline etc. Hidden disabilities are very real, and when things are going sideways and we are dealing with a rough situation telling me they need a harsher punishment to whip them into shape is the least helpful thing, at those times what is most helpful is for someone to help shoulder the burden. And by that I mean when I feel like my head is going to explode due to the stress of the situation, having a friend to have a cup of coffee and a laugh with helps, having a loved one offer to take the child out for a walk so I can have some respite helps. Saying if you punished them more does not. Saying they are perfectly fine, when I am about to lose it does not help, it makes me feel like my feelings and stress are inconsequential that no one cares.

    My oldest has adhd, auditory processing disorder, sensory issues, mood disorder and conduct disorder. Becuase of the conduct disorder label the dr’s will not treat the rest saying he is choosing to be bad. ANyone else that works with him myself included say he is likely aspergers not the rest. He is not mentally/emotionally his age, he is exhausting to live with, to raise, to teach. But at the same time he is such a sweetheart when that side shows through.

    Next born fortunately only has adhd and gifted, and she is amazing helping with the rest of the kids.

    3rd born has adhd, visual processing disorder, tracking and convergence insufficiency, moderate language delay(formerly severe, but has improved), bowel disorder and they are starting to see other learning issues. As well as chronic nerve pain after his leg was broken in a car accident at bible camp 2 years ago. He is challenging but not like oldest.

    Youngest is only adhd and gifted like her big sister.

    My kids issues are not nearly as bad as many who posted, but when living with a child with a mood disorder, conduct disorder and impulse issues you live like you are going to step on a landmine any second. I never know what will trigger him and when something does it is intense and insane and so much to try and cope with. The platitudes and comments at those times are more hurtful than helpful.

    In dealing with my oldest I lost all friendships (people don’t want him around), extended family don’t want him around, I can’t leave him home to go out, so that means I never get a break or time to get my wits about me until about 2am. I go on perptual sleep deprivation and although every child is a blessing, I don’t always feel that in the moment and telling me that will leave me then wracked with guilt for not feeling that while in the trenches knee deep in sh*t.

    I want people to reach out, I want people to make conversation and ask about my kids. But can I talk with pride about when they finally established enough balance to ride a 2 wheeler even if it is years after the norm. Or can I talk about how we finally had a break through in learning to read even though the child in question is turning 10 without people tsking about the delay. I want to speak with as much pride about my kids accomplishments and have them oohed and aahed about as much as the person with the honor student parent gets to.

    I don’t want pity, I don’t want people avoiding us, I want to feel as normal as any other parent even when dealing with abnormal situations.

    So no I won’t really beat you with your own left arm. But I may not be as chipper as you like. I may not smile much these days, I am not depressed, I am exhausted and worried and scared for their future, and wishing I could worry more about them getting that driver’s license, and first date, and graduation, more than whether or not they will ever be able to adequately take care of their own hygiene needs, make a friend, stay out of prison. Ask about my kids but don’t tell me how to parent them, how to cure them, how to make them more like your own. They are who they are, and nothing will change that, just help me be the strongest me I can be to continue working with them.

    I didn’t want to write that all out the first time I commented, but thought maybe it would offer further insight and not make it look like I am out telling people off etc (which I don’t unless you have crossed a line and gotten just plain mean towards my kids). I still remain civil even in the face of platitudes, I have mastered the smile and nod, but inside I am a screaming and crying and feeling the burden a little more.

  • I can’t tell you how much your words resonate with me. You nailed it, spot on, amen and amen. All of those things have been said to me, the email about getting re-routed to Holland was sent to me dozens of times. (And yes, we were actually re-routed to Sudan too…). Thank you, thank you, thank you for publishing this. Given the number of responses, I’m not alone in agreeing with you. Hang in there, fellow Dragon Mama. You’re doing a great job.

  • Molly Canary

    Our hope is that this blog is read by many, accepted for its truth, and changes relationships in a positive way
    To all mothers everywhere, hang in there. It is worth all your efforts. Try to sleep on contentment remembering all the successes no matter how small.
    With love from someone who has experienced intimately the day to day struggles of one family
    To see a mother and father love their autistic child through several outbreaks of their child.’s pain. To see two brothers’ acceptance, their freedom of jealousy or stress when their must attend their brother’s need extra love and care is to want to be a part of that extraordinary family who loves you too. AFS Mum of Vanessa Jessett. Love you.

  • ohmygosh – I blogged about the “things people say” a few months ago and you’ve touched on pretty much the same things I did. What I did was list what people said, how it made me feel and what I would rather hear. If you get a chance, please check out my blog (on my website) and search for The Things People Say. We are sisters in heart!

    Thanks for your honesty and sharing your struggles. I totally understand. Totally.

  • CA Father,
    Glad you have worked through your grief and moved on to acceptance. Not everyone is at your stage in the game. They are allowed to grieve at their own rate, in their own way.
    Thank you Adrienne for posting what many people are afraid to say out loud. We all have to work through the grieving cycle, just like CA Father did at one time (he may have forgotten). I am so far beyond the grieving process having been part of the disability community for about 30-some years. I do have my times when I dream of “what could have been”, but those are fleeting moments. My efforts are in fighting for a better systems of care for all individuals with disabilities, including our aging adult children.

  • Pat

    Thank you o much for writing this there are so many people who need to red it

  • Rhonda

    Thank you for writing and sharing this.

    Though my son did not have the same issues, the comments from others were still the same. My Mom still asks me if I took anything that could have caused his problems from time to time.

    Because my son passed away this past March I still hear, “Well at least he is in a better place now.”. I am glad that idea seems to comfort everyone else, because it surely doesn’t comfort me at all. Now, I know that thankfully he is no longer in any pain, etc., but even with all of the things hooked to him he was still the happiest little guy in the world when he was in my husband, my little girl, or my arms. So, if you ask me, the better place would be here with me still fighting for him and doing everything I could to enrich his life. Although the comment is meant in a positive way it just makes me want to fight.

  • Anonymous

    Adrienne,
    Thanks for sharing this. Although I work as an Educational Assistant, I have been guilty of falling into ‘quick and easy’ (aka trite) responses such as you have shared. I have linked from my blog to this one, for my guest post on Sunday … my readers need to read this! Blessings to you and your family as you walk this road without a map.
    Carole

  • […] identified with so much of this post: “Dear people who do not have a child with disabilities” Please read it so that you know how to relate to parents who do. If you don’t have time, I […]

  • Rhonda – I am so sorry for your loss. Thank you for sharing with us.

  • […] Dear people who do not have a child with disabilities… […]

  • Cindy

    Agreed! Thanks for sharing! My favorite comeback to “wow your doing such a great job with her” is “but Brad and Angelina would do much better!”

    • wes

      Cindy, I’m trying to understand how comments by others in this community are taken, and I don’t understand why “you’re doing such a great job” is a poor choice of words? Personally I’d love to have someone tell me I’m doing a good job parenting. I’d like your perspective on what’s wrong with this encouragement. Many thanks.

      • Wes, it feels very belittling, like being petted on the head.

        • wes

          Oh, I would have never interpreted it that way. I would have taken it as “someone recognizes that I am working hard for the benefit of my child”. I appreciate your clarification

        • Anonymous

          Wow! “You’re doing a great job” is belittling?!?! Seriously??

        • Anonymous

          Adrienne – The more I thought about your response that “you’re doing a great job” is a belittling comment the more it made me sad because it seems like such a defeatist attitude. Such a lack of confidence. And if you lack confidence in yourself, do you also lack confidence in your child? And when I say “you” – this time I mean it in a broader sense. Not just you but any of you that feel that same way?

          If “you” can’t take a person’s complement to your parenting in a genuine light, that, to me, says you also may not believe them if they complement your child. Do you think they are being patronizing and belittling if they tell you your child is bright and is doing a great job? Do you hear “He really IS behind and not very bright but I gotta say something nice”.

          Because my son is very delayed. He’ll *probably* never graduate from high school with a “real” diploma. He’ll probably never go to college or live on his own but I have had people say that HE is doing a great job. I have had people say he is very bright and very smart and I know what they mean and they are right. He IS bright. He IS smart. Damn straight. He can’t even wipe his own butt or have a real conversation with me, but he can memorize extremely long words in a heartbeat and finger spell them back to me at random times to get his point across when I didn’t even realize he had noticed the word. So, is he smart? Absolutely!

          So to hear you say that you hear a comment like “great job” is belittling, well that just makes me sad.

          • It’s OK for me to let people know what I need. It is also OK for you to speak/act as you choose. I’ve not condemned you here, no matter how you’ve chosen to read it. As I said yesterday, please feel free to disregard everything I’ve written and support the people in your life as you see fit.

          • steve krausz

            I think “You’re doing a great job” could be a compliment or belittling, depending on the context and depending on the tone of voice. i can very clearly, in my mind, hear someone saying it in a way that is patronizing. It’s like seeing someone in a performance that you thought was pretty terrible, so you tell them “that was so interesting” because you are too honest to say “I enjoyed that” when you didn’t, or “that was a great performance” when it wasn’t. Same here – after your child has done something well, or achieved something new, then “You’re doing a great job” is a compliment, but when s/he’s sitting there drooling and paying no attention to his/her environment, or when s/he is tantrumming, it is clearly patronizing.

  • Anonymous

    Thank you for this open and honest message.

  • L

    This was a great article! I laughed, I cried, I related. I struggle more than anyone would know. My friends block discussion because they feel uncomfortable (but say things like, “you’re strong, you can do it”. They don’t realize how this ends any conversation. I can’t share at work because my job is with kids with disabilities. No matter how much you know, there are always such tough things that you go through. I can’t get to the support group because there is no one to care for the kids. My husband can’t handle them alone, my family won’t keep them because they can’t handle them either. I love my kids with all my heart. It kills me to see them rejected or ignored. My only outlet is online with other moms who understand on a level that no one else could. Thank you for your article!!!

  • I think some of really miss the original point of the blog. I believe Adrienne was going through one of the WORST times with her son. Give her a break.

    I think Adrienne is doing her best to work through a difficult time in her life. That she did it in a public way and has been ever so gracious to comment back to many of you, show to me that she is a caring, loving person.

    We all deal with grief in different ways. That CA Father fights so hard to show he is not affected by his child disability is also part of the grieving process.

  • BHodges

    Absolutely remarkable. This is one of the best things I’ve ever read from the perspective of a parent of a child with a disability. Thank you.

  • […] Dear People Who Do Not Have a Child With Disabilities… | No Points For Style […]

  • Yvonne

    I think that feelings are not rational. Many of us have trouble understanding how a comment that sounds complementary could make Adrienne feel belittled. I think that sometimes it doesn’t really matter the comment, it’s how you are feeling at that time that will define how you interact with other people. And clearly she was feeling lousy at the time. I think it was very brave of her to share her feelings on the blog and put herself out there like that. Let’s all understand that feelings are not rational. Yes it’s our job to control them, and that’s what venting is for. I understand completely how a compliment could make you feel belittled.

  • Jennifer

    That is a horrible thing to say but many parents would walk away at that point. I don’t think any harm was meant but it was insensitive to say to a parent who is worried sick about their child being safe.

  • LH

    Well said. I always thought your post “Love with Teeth” was your best piece but this is a close second. I recommend LWT to many but will add this too.

    Your writing is powerful and the message is too…

  • I am so relieved the little girl was found safe. I remember the terror everytime my son was missing. Alarms on doors, windows nailed shut, dead bolts with interior keys, sleeping with him tethered to me so I could finally sleep for a couple hours without him vanishing. I still have nightmares over those times. Like your friend’s girl he was always found by good people who would bring him home, or the police would find him, the time he fell through the ice during one of his episodes of running was right in front of an off duty EMT and cop taking a run by the lake. I have heard to give him up more times than I can count. My own mother, his grandmother, thinks I should give him to his unstable, at times verbally abusive father so I don’t have the stress any more. The running away has mostly stopped now that he is a teen, but I lived with that terror day in and day out for a decade before it started to end. Add in all the other things and well yeah. I try to find the silver lining in all things, but when mental illness is at play there is little silver lining. Especially when the medical community says “yes your son is mentally ill, but we don’t like to give the meds for that illness until they are adults” so the child is left untreated for years.

    Yes attitude of the parent can make a difference, there is no doubt about that. But there is a difference in how certain disabilities wear on a parent. Some are relatively easy to manage (relatively because none of them are truly easy). You can get to a decent attitude and look for the positives even when things are tough when it comes to a physical disability, or a mental one. While there are some challenges there are still those happy pockets. What about when you have a kid that is mentally ill and self destructive, and sabotages every possible happy thing, and is intent on harming others during those episodes. There is no peace, there is no time to be contemplative about the postive side of things. There is survival, plain and simple. A lot of my son’s issues are similar to what adoptive parents deal with when their child has RAD, ask them about the silver lining and keeping a positive attitude when dealing with that. The constant stress levels and high cortisol as a result have actually made me very ill. nearly 15 years of being on high alert at all times, with that fight or flight feeling constantly, have messed up my adrenals so badly that last fall the dr’s thought I had tumors and were discussing me making plans for my kids. I got so ill I could barely move. While I am much healthier now, the adrenals are not healed, I still have far too much stress which causes my chronic pain. But you know I will keep my happy smile on and think wow, life sure is grand, these little challenges are just a bump in the road. The reality is, my oldest son is slowly but surely putting me into an early grave. But hey silver lining to that is it will be very peaceful and quiet and I won’t hurt physically anymore, nor will I be heartbroken as I try to help my son through each bout of self destruction.

    I can say for myself, and my assumption is for the rest too, that even when we are feeling desperate for our situation with our kids, we don’t wallow in it. We simply can’t. We suck it back, we hold it in, we put on a smile and we deal with the situation the best way we can. Blogs like this one, show a glimmer of the pain underneath it all. We aren’t laying in bed with the covers over our heads bemoaning the hand we were dealt, we are on the internet searching for answers, running to various dr’s looking for help, crying and begging God to give us the ailments if it means our children can be healthy and whole minded. We are hurting, and scared but we are stronger than we think. And while we may not appear to be doing a good enough job crapping out rainbows with cheerfulness over the situation, we are doing the best we can with the resources we have.

    And sometimes those resources include blogs where we can let that pain out without our children seeing it. Because we don’t want our children to see that pain, because we don’t want to burden them with the guilt of something they simply can’t help. And I do believe that is ALL moms and dads with disabiled children and the use of the word WE is appropriate. Some of us have the resources, inner strength, whatever to be happy and positive all the time. Some like me tried very hard to be until it was stamped out in the path of destruction created by a child with a severe mental illness.

    There is glimmers now and then of a positive future and then he cycles again and that is trampled completely and we start rebuilding again and again. When they are 7 and the future seems forever away that is okay, you think there is time, their is hope this will change. When they are 15 and the future is looming it’s hard to think it will be okay. And you know what? That is OKAY to feel that way. It is okay to have “negative” feelings. We don’t have to be happy about this situation. We can be angry, and scared, and sad and all those feelings that many seem to feel we should suppress. It is okay to be human and realize we are not machines, and our hearts are breaking as we realize that the hopes and dreams we had for our children will not come to pass. And not only that but that there is very little hope of any coming to pass. It is normal to not be okay with that. It is normal to be in pain and not feel like we have to look for the postive in every situation. Because a child who has his suicide planned out at 7 is NOT a positive situation in anyway shape or form. A child that destroys property and gets arrested at 13 is not a positive situation in any shape or form. A child that stuggles one minute with feeling death is the only way out and the next with thinking it is funny to race a train, is not positive in any way shape or form.

    The fact that child loves his pet enough to keep hanging on even when he wants to die is postive, and that is something, but really is that something to be cheering and celebrating when your heart is breaking that they thought of death at all.

    As parents we want nothing more than to shield our children from pain, from suffering, from ill will. But what about when that pain, suffering and illwill comes from within the child? How do you expect to keep a postive attitude all the time when you are helpless to help them. What about when the child understands something is wrong with their thinking, and desperately wants to change it and can’t, and cries in your arms asking for you to take away the racing thoughts, and stop the bad feelings and make them be normal so they can have a friend. Tell me how to pull out the positive attitude then, when I am crying while holding him begging God to help me help him. To be strong enough for us both, because I sure as heck aren’t on my own.

    But I’ll get right on remembering that if I didn’t already have enough on my shoulders now I have to remember to be happy all the time and look for that postive side of it all.

    Okay I will stop adding comments, I think I have written enough.

  • Adrienne, Thank you for sharing. I’ve walked a few miles in shoes like yours. I have two special needs kids. I read through your piece and could relate to every point you made. One I would add based on recent experience relates to my being diagnosed with SLE. 8 out of 10 people will say seething like, “Do you think that’s related to your boys?” Or, “It’s because of all the stress you’ve been under.” The worst was, “I bet one day they’ll discover that autism and lupus are related.” That was my family physician who I broke up with right after that. To suggest to anyone with special needs kiddos that their own health struggles are a result of not being able to handle well what life has brought them is foolish. In fact, the opposite is more likely to be true. Parents with special needs kids handle stress better than many others with far less stress.

  • Cynthia A. Jones

    I’ve heard A LOT of those! My “favorite” one isn’t listed, though. “Do they think she’ll grow out of it?” I DUNNO! Do they think YOUR CHILD will grow out of having brown eyes? Generally speaking, people do not “grow out of” genetic conditions!

    I also loved your father-in-law’s offer to straighten him out in two weeks! My mother used to tell me, “One good spanking would put a stop to that.” SURE it would!

    Thanks for writing the article that I wish I’D written!

  • AnonL

    The primary article was edgy, but also poignant and on target. Thanks to Adrienne. All of the comments were also valid. We need to start a national debate on this issue – maybe this is a start. Most of my own family doesn’t “get it”.

  • I have 2 sons,grown now,as a single mother,i often heard he cant be controlled,i went and took my baby son, to my oldest sons headstartmdaily because they couldn’t control him,but I never had to go to his class,its funny how a child that cant behave can ,in others eyes, when professionals have to admit they don’t know what to do, when they wont test for ADHD or any mental health problems, even though it runs in the fathers family’ and say your son is just wild, how schools cant,lol,wont make classes where my son didn’t feel he had to drop out because he was falling so far behind in areas, even though he has a iq that would make any mother proud,he is now daddy to a child that isn’t his working in the oil field because the school didn’t give him the help he needed to graduate, and after a certain level,i couldn’t be there to help teachers understand, he is doing good,i am so proud of him. he has done great ,considering the education the schools offered,we are in a major colledge town,it would have been easy to help him, if they would have tried,instead of just labeling him and blowing him off

  • TrueFriends

    I understand everything you are saying….we have our own situation where folks make bad comments and you think “really!”

    One thing to remember is people’s intentions. I have a very close friends with a son with Severe issues. I love her and I love him…..of course I see how difficult things are for her but I also see what a loving sweet happy boy is.

    Could I say the wrong thing Yes. But my heart would be in the right place. Over the years I cannot believe the horrible things other “friends” have said behind her back…I would never repeat them to her since all it would do would be to hurt her. But it can be hard watching them be “nice” to her face knowing how they really feel.

    So remember even when some of us say the wrong thing…..its what’s in our heart that really matters.

  • […] Dear People Who Do Not Have a Child With Disabilities… – A must read for anyone who has a friend with a child with a disability […]

  • […] I quite enjoyed this open letter to parents who don’t have a kid with disabilities. She gives some great tips on what NOT to […]

  • RaD

    Wow. You’ve got a lot of comments here. Not even sure if you’ll see this one but here goes anyways.

    In the past I have been guilty as charged. Although thankfully I caught on quickly that what I said was not helping one bit. At one point, after a meltdown from my friend, I merely said I have no idea what to tell you and gave her a big hug. She said just listening was all she needed at the time. I learned (not to say I won’t trip again) that day to listen and not speak is one of the greatest gifts you can give to a person.

    The last thing I want do to is be just like one of Job’s “friends”.

  • Adrienne –
    Your grace in the face of criticism is inspiring.

  • Incredible writing, incredible message. I am sharing this on my Facebook page as I know a lot of parents who have children with special needs.
    Thank you for this.
    Lisa

  • Lynn

    Thank you…just thank you. Also, thank you to all those who commented. I need everyone one of them, even the ones who felt the blog piece was self-pity or negative outlook, etc. I personally and one that “gets” the article completely and needed it, but the other few comments show me that I have progressed..I and many others. Authenticity is a value I hold dearly and I believe is the ultimate goal in life. Those, that could not even find a shred of empathy in the article, in my opinion are presently in denial and I feel very sorry for them in that regard while still glad they are loving their disabled children….Boy, I so needed this! <3

  • Such powerful words. Thank you for putting them out there. I’d like to share this on my blog Surviving the Madhouse. I have 2 children with mental health diagnoses and I have health issues as well. This post really hit home. Please let me know if it is ok to share it with proper credit of course.

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