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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448 comments to Dear People Who Do Not Have a Child With Disabilities…

  • Dana

    The one: “You’d never know! She seems fine! All kids do that!” It’s so frustrating because I’m not heard. And not helped – she’s fine! why would she need special circumstances? special help? or, what I also hear, Why does she get an exception and my kid doesn’t??

    Sometimes I say something about how hard it can be but she’s come so far. Then I get comments about how amazing I am, how hard I am working. The thing is, I always feel like this is just what our life is. She’s working hard, the therapists are working hard, the parents are being parents. And I feel like I could always be doing more. I didn’t say it for compliments, I said it because it was fact and I needed to vent and point out how fabulous my girl is.

  • Elska

    I get, at least it’s not degenerative and she looks so normal! Wow. Ok. So my kid should be dying or physically deformed to have something wrong with her? Please, come over to my house at 2am to see my normal looking daughter trying to run up the stairs and throw herself down screaming for hours while her 2 sisters and Dad try to sleep. Come visit us in the hospital after a huge seizure and she’s in a drug induced coma for a few days and tell me how lucky I am it’s not degenerative.

  • Marianne

    Thanks! Another one I have heard many times is “Didn’t you know that this could happen with an adopted child?” As if my pain is negated by the fact that I am a moron for trying to share my life with an adopted child, and the fact that I am apparently undeserving of happiness because I am infertile.

    I no longer stress about people who don’t understand, because many people will never, never understand and they are not worth it. But your pain truly resonates with me because I have felt it so keenly for so many years.

    It is so wonderful to know I have not been alone, but so sad to know that you feel these things as well. God bless!

  • Yes. My least favorite is anything dealing with God. Leave God out of it. God’s not that cruel.
    SammichesPsychMeds recently posted..Teachers: You Are Worth Far More Than They Say

  • haley

    At every party, event, answer to a question, I feel/hear this: “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.”

  • AnnieRN

    This is wonderful. We have six kids (five with severe special needs–some homemade, some adopted). We’ve spent a lot more time in Sudan than we ever spent in Holland. Thank you–your son has an awesome mom!

  • AMEN!! AMEN!! AMEN!! AMEN!! AMEN!!

  • Wendy

    My child has down syndrome and the comment I always get is “ooohhhh…they are just the happiest people.” It makes me feel like I am raising a Keebler Elf instead of a person. Its okay that my child has an endless list of health problems and future challenges…because they are “happy”. Plus I have never met another ds mom who would describe their child as happy all the time. It’s a bit more complicated than that. But I love how you wrote “In fact, my love is causing my pain because if I didn’t love him, why would I even care?”. After 16 months I am STILL struggling with the diagnosis. I have finally decided that my brain won’t accept it because I LOVE THIS CHILD SO MUCH.

  • WOW! I say wow because I remember times of feeling this way and angry at the world. But the truth is I don’t know how I got through it. I lived isolated etc. I would go to church and everything. But now 19 years in this with the most amazing young lady my daughter. I know beyond a shadow of a doubt that somebody was praying for us. I learn to pray and have open conversations with whom I believe in and that’s GOD. I believe that with all my heart and I believe we as Special needs parents are strong enough to make it and to learn and to teach.. I onced turned my back on everyone and everything including God. I was mad and hurt. So the point I’m making is the ppl making these statements aren’t always trying to hurt you. You hear what you want because of how you feel. Somethings shouldn’t be said but do they honestly know that?..Remember.they don’t hear what you hear….. Teach them if they are your real friends and if they aren’t teachable and still speak in a way that’s offensive then you walk away and never look back and sorry but that includes family members. Your best interest is for you and your children. And you are right sometimes we just need you to listen and to be there, but you have tell them or walk away. Blessings to you all!.

  • Helen

    I must apologize. I have said/thought just about every one of these things. Not to make you/parents feel bad, but because I was trying to be helpful, make conversation, do something. I talked about your child as if he wasn’t right there. I am so sorry. Thank you for this. I will LOOK at the moms and dads and not attempt to be anything or say anything. Of course you know what you’re doing. Of course you heard of that treatment, vitamin, exercise. Of course you could use a kind word. I will try and provide one from now on 🙂

    • Larissa

      Thank you Helen. Most people wouldn’t even try to understand. Your apology and future efforts and understanding will go a very long way. Once again, thank you.

    • Thank you, Helen, and as I said, I’ve said some of these things myself, so it’s not as if I have a high horse to stand on. THANK YOU for hearing and understanding.

  • I agree from the bottom of my heart with everything you have written. You write with such passion and express your ideas so well. Have you ever thought about writing a book? I have written one about raising a daughter who had bipolar disorder and found it to be very healing. My book is “God Placed Her in My Path:Lessons Learned from the Furnace of Bipolar Disorder.” Keep writing!

  • Melissa

    The ones I struggle with the most is the ones that are not mentioned. If you would just discipline him, he would behave, can’t he act his age? why doesn’t he act like other kids, or the ohhh bless him, he still does baby talk….ugghhh makes me want to slap someone. it took me searching on the internet for hours and finally stumbling on a support group on Facebook before I realized there was other kids with what he has (dyspraxia). I felt alone, lost and the stress about did me in. I hated going to the parka s he just couldn’t, the funny looks at his crossed eyes, etc, etc, etc. When people would say something it hurt because they would say all the wrong things. Hes 5 now and I still cry sometimes. Thank you for putting this out. I am sharing with anyone I can!

  • I don’t always enjoy reading posts by parents of children with disabilities for reason I do not wish to explain here. But I loved reading this one of yours. I am not a parent, but rather a child with a disability called autism, who has grown into a middle aged adult, still with that disability. It never does go away. Thank you for this post.

  • I’m not a special needs parent but I grew up with a down syndrom child. Also I am the caregiver to a cerebral palsy child. Growing up with Saul (down syndrom)wasn’t easy due to that he would hurt us un intentionly but as you state we have to understand and comprehend the child and/or parents . In this case my parents/family were the only ones they could visit or interact with because others couldn’t understand Saul’s behavior. We learned to love him just the way he is. On the other hand with Eleazar (cerebral palsy) Ieven though I’m not the parent I get questioned. What I get is Why is he like that or why this ? What I tend to do is just walk away even if it seems being disrespectful. Not just grown ups seem to be cruel also kids tend to stare or ask questions. Over all I say people need to understand and tend to be less cruel. If you know someone in a situation/crisis show support offer your self. I assure you that person will forever thank you

    • Tamara

      Fabiola, I appreciate that you understand parents with children with disabilities even though you don’t have any children with special needs of your own. However, please remember to acknowledge the child first then their disability. In other words say “a child with downs syndrome” instead of a downs syndrome child. He or she is after all first a child and secondly someone with downs syndrome. The same with the child you care for with CP. I have a daughter with multiple disabilities due to a brain injury during a heart surgery a week before her first birthday so I also understand, maybe even more so, how difficult it is to answer the “why is she like that?” or “what is wrong with her?” questions. If it is a child asking I don’t want them to be afraid of a surgery because of what happened with my daughter so I usually say there was an accident when she was a baby. I don’t mind answering those questions though because I take it as an opportunity to enlighten that person (whether adult or child) about my daughter and about disability awareness in general. If you just walk away that person never learns how to relate to a person with disabilities. I find that most of the time they have just not had that much experience with people with disabilities. I especially like to talk to children because obviously their parents haven’t been able to teach them. I don’t think they are being cruel, just curious. I try to ask the person if they have any questions or introduce my daughter to them and ask their name. Sometimes I will ask my daughter to tell them her name. She cannot say “Kaitlin” but she says “K T” (Katie) and people get that. When I initiate the interaction with my daughter and they learn that she has a name they are instantly more comfortable with her. Blessings on you for caring for a child with CP who is not your own, especially considering your growing up experience.

      • Anonymous

        Tamara,

        As a parent of a child with autism (non verbal), can I say that I get so sick of people towing the PC line here? My son has autism. He is autistic. Same difference.

        I do agree with you about how not to interact with curious people: “If you just walk away that person never learns how to relate to a person with disabilities.” Being rude to someone in that way certainly does not foster any understanding on their part and may alienate them from trying to understand in the future, and it is a big disservice to all involved.

        • Tamara

          I am the last person who would perpetuate PC. I was simply saying that we want to emphasize the humanity of people with disabilities first. Is Autism the sum of your son or are there other things that contribute to who he is? Does Autism totally define him? Are you ok with people only seeing the Autism and not him as a person. I do have several friends with children with Autism and there is so much more to them than the Autism. That’s all I am trying to say. My apologies if I have offended you in any way, that is not my intention at all. Blessings on you as you care for your son. May he bring you great joy even in the midst of the challenges a child with Autism brings.

  • I actually don’t agree with this article at all. I am the mother of a seven year old with a visible, physical disability. Sure sometimes people say stupid insensitive things, but that interaction is my chance to educate and make an impact on them. I believe that although my daughter is only one person, she can influence people to be more kind and thoughtful in their lives and future interactions with other disabled individuals. My daughter is super confident and articulate about her “difference”. Being angry with people wouldn’t help anything, it would just teach her to be angry too.
    Amanda recently posted..Dear People Who Do Not Have a Child With Disabilities…

    • shema4t4

      Educating others is a very good thing but I don’t owe it to the world to use every minute of my day to educate them. The author is right…many of these comments are a way for others just get us to feel better for no other reason than our pain makes them uncomfortable.

    • Ah, but this is MY chance to educate. This is my opportunity to show other people how to support others. I’m not angry; I said many of these things myself before I had a child with disabilities. I hope that by sharing these stories, some people with more effectively support parents (and others) in pain.

  • Nancy

    One that I need to let you of:
    “Even if she didn’t have autism it would be hard.”
    What we hear: “It’s not really that hard. It’s only because you don’t know hard from soft, up from down, in from out that you find autism parenting hard.”

  • Jessica

    Very true, most of that. I remember some of these words causing me pain and self-doubt at a time when I needed support. Another one is, “He just needs more discipline/firmer boundaries.” Yeah, right, and that will stop him screaming when a stranger tries to make eye contact with him, will it? You know how people pin a baby with their eyes and smile, and most babies will respond with a smile? Yeah, with ASD it doesn’t happen that way. But still no diagnosis until 9 years old. 5 years on, most of the people I know don’t say stupid things any more. They have finally been educated. BUT, since I know people mean well I would not ask them to stop saying such things, even though I am now going through the same thing with my daughter, as it gives me a chance to analyse what they say and work out how correct it is and whether there is anything that could help. But since changing bare, splintery floorboards for a lovely smooth laminate flooring at the weekend led to a full day of meltdowns followed by a full day of exhaustion, I know that know amount of discipline and boundaries is going to help with some things…

  • Jane

    thanks-thats all!I’ve heard them all and they haven’t helped me either!Just knowing you’re not the only one is great.I feel bad because before my adventures in disability I did think parents with disabled children were amazing and different and had somehow been chosen.What was that all about!?When it became obvious that my daughter had some real problems,my feeling was that it wasn’t possible because I wasn’t one of those people-and I was right-I wasn’t-but guess what those other parents weren’t either!Welcome to Holland really did help me actually.But life is hard all the same.My feeling since entering this strange parallel reality of parenting is that life is much more hideous and more beautiful than I ever knew-but all mixed up and jumbled up together at the same time-exhausting! Oh and I have never laughed with anyone the way I laugh with other parent/carers who I know well.(I try to avoid the ones who have a kind of negative competitiveness”well my child hasn’t slept through the night and can’t speak and has fits all day long”- I hear’of course she’s not really disabled’)

  • paula

    I am the parent of a child with disability. .. I can identify & agree with a lot of the above… I find that acknowledging the hurt helps
    ..as does the comment ” it just isn’t fair”. …

  • Cristina Lino

    Hello dear,
    you sound as if you still are in a lot of pain and that pain i know very well. I have a son who is spastik and he will be 27 this year 🙂
    My experience is that that pain never goes away, but that you can learn to live with it, at least i have.
    My heart is with you and if you´d like to have contact with me, ask me questions, get some support, you are more than welcome to write!
    Unfortunately i live in Denmark, so i cannot visit you and help you practically, but maybe i can give you a little help from my experience?
    Much love from a mother in the same situation,
    Cristina Lino

  • Kristin

    Thanks- this is beautifully written and so important. I’ll be sharing it.

  • Linda

    Thanks for sharing Adrienne, I have heard so many of these.. yes like many I can identify and at times I cringe, I too will share

  • Shannon

    My very favorite is being told she will grow out of it. God will bring her out of it

  • I rarely read anything that truly knocks my socks off!!! You nailed it with this one. In fact, I recommend that this piece be printed and handed out to every single friend/ family member of parents with kids with special needs. It would save us a whole lot of heartache and frustration right from the start. Great job covering all of it. You didn’t miss a thing.

  • Wow. So well said. Thank you. I want to print this and hand it to everyone I run into that stares at my daughter. And give it to my sister in law who sneaks food into my daughter’s mouth (because she doesn’t believe she can’t eat), and makes her choke. Well, honestly, speaking off choking, I’d probably just stuff it down her throat, but you get my drift. And as honest as you were, you were also gracious. LOTS of points for style!

  • Jess A

    Your emotions seem very raw here, and that’s okay. Raising a child with special needs is an emotionally charged, and sometimes draining experience. I don’t know from your article how long ago these comments where said to you. However, I honestly think you should try to see them in a different light. You said yourself that you don’t think those people meant any harm by what they were saying. Yet, you have chosen to view their comments in a rather negative way and in turn have put yourself through unnecessary torment in doing so. Some of these comments I would chose to view as compliments. It is very true that not all parents of special needs children are cut out for that job. Some of them struggle horribly with the responsibility and fail their children miserably in means of loving and supporting them.

    I have heard “I can never do what you do”, that if “God brings you to it, he will bring you through it”, that “God must think you special because he gave you a special gift” and many other things dealing with God in regards to raising my son (who has CP, a chromosomal disorder, and is wheelchair bound). Never once did I think they were trying to say something other than what they were saying. There is no malice or underlying hurtful message in what they were saying. They were honestly trying to be helpful, and quite possibly uplifting. Their words were a means of being supportive.

    You are right. Sometimes people don’t know what to say to parents of special needs children. They simply haven’t gone through what we have. They have no knowledge of what it takes to do the job that we do. Just keep that in mind the next time some well meaning person says something to you.

    Try not to read too much into their comments. A lot of times people don’t mean what you think they mean.

  • Anon

    Honestly, when people tell me my kid looks fine, I just figure they are saying that to make me feel better, to not isolate her or me, not to imply I am making it up !!!! I use these comments as an opening to educate and teach people about my childs disability. People will be making these comments until the end of time and I have realized I just have to deal with it, assume the best of intentions and move on or choose to be offended and miserable. A good article none the less, but I just do not feel this way.

  • Rose

    Thank you so much!!! I hate when people say poor baby to my little sister diagnosed with Down syndrome! Why call her poor baby? She’s happy she’s smart,she is well behaved,mannered! These are things people don’t realize affect us but they sure do! Thanks so much for speaking up for our children and families with children with disabilities !

  • As a friend of 2 beautiful special needs children and their mother; I found your site to be very informative. Thank you for spelling it out for me. I want to do and be whatever my friend and her children need. I just love them and my heart breaks everytime bad things happen or my friend is so exausted that she talks for hours. I feel honored that she trust me to know that I want to listen and I never want to say anything to insult or hurt her.
    Thank you

  • I read this and it sounded like me, I have 3 disabled children all brain damaged to different degrees all with Cerebral Palsy and I have had all this and much more said to me, I will never forget the one time in the middle of a busy shopping centre and old lady came up to me and said what horrid thing did you do to deserve kids like that, I normally smile and walk away but just that one time as I felt every ones eyes on me I stood up and told her what I thought of her attitude, the best one I got it kids like mine should be put to sleep at birth or left in homes like they did years ago, some people are heartless, my kids are smart and funny and loving and do not have a bad bone in their bodies, I am proud to be their mum and I cope just fine, it is other people that have the problem with them not me…

    Sadly there is still so much ignorance surrounding disability, on my blog is my daughters story that she was lucky enough to make with the BBC and they made it so good, this went in to schools in the UK to try to put a stop to bullying, sadly while she was in primary it never worked…

    Hugs to you love Pops x x x

  • Sonya

    I am a mother of a 14 year old boy who had Cerebral Palsy. I say “had” because he passed away on April 30, 2013. So I spent 14 years having people say these things to me and tell me that I’m such an amazing mother, blah, blah, blah. None of it made me feel better. None of it helped me do anything for my son. It was always so frustrating. I would tend to tell people that if you don’t know what to say then just don’t say anything at all. I would rather have them ignore me than say something stupid.
    And now that my son has passed away, I’m STILL getting the same expressions, only now I’m getting them in the past tense and in the frame of reference of grieving for my lost child.
    I just wish it would stop.

  • Elizabeth

    Thank you!
    We’re recently going through testing for my 2.5 year old son. Before two weekends, not even my husband seemed to really understand what I was dealing with. However, the past two and a half weeks, have been a constant barrage of screaming, sleepless nights, refusals to eat, and tantrums including hitting and biting his sister.
    The advice from the doctors right now; let him have his way, let him eat/drink what he wants. As long as he’s “thriving” they aren’t concerned too much with it.
    This has been going on since he was 3 weeks old. THANK YOU! For validating me, because of your blog, I know I’m not imagining it being worse than it is.

    • valere

      this drives me insane for you. please keep searching out answers. record his behaviors on video. if you know something is up you are probably right. trust yourself. i am a parent of 2 on spectrum and a behavioral therapist. i know to trust parents. they are always right…

  • Jackie

    My favorite one is “I’ve never had any trouble with her. We just treat her like a normal kid and she’s find.” Well, you’ve never seen it because I make sure that everything is set up for her to be most successful when she is in someone else’s care.

  • Great post with so many variances of the same comments I’ve heard over the years. I don’t think people mean to be insensitive or mean or cruel when they say these things – it’s human nature to want to help, and human nature to bumble that sometimes.

    I look on many of these interactions as a chance to educate others (“I don’t know how you deal with it all” generally brings my basic answer “because I’m a mom and I love my kid – I don’t know anything else to do, and I still have my crying jags and days of feeling overwhelmed”) … but you know what? I have days where I just want to whip the next person who says something like this with a wet noodle because seriously? I am exhausted and tired and overwhelmed and … the list goes on!

    I never thought about what these comments said about the other person’s inability to hear my pain, but that makes some sort of sense as well.

    I’ll be sharing this — while I think every special needs parent feels differently about these kinds of comments and how to react to them, I think family and friends should know to be more sensitive, to care about it. Because at the end of the day, discounting my pain and anxiety because you can’t deal with it isn’t what being a friend is all about (we can’t choose our family, so I tend to discount their responses sometimes!)
    Katrina Moody recently posted..Open Letter: Please Don’t Try to “Cure” My Child with Autism

  • Wish I had a talent like you and so many others have. What you wrote here is so absolutely true. We have been traveling this path for almost 39 years. Every comment you made has been heard by us, even all those years ago when it was usual to agree to placement in an institution, where ‘ he will be taken better care of.’ Definitely not our choice, but I will admit that there were occasions when that invite did look tempting, at least for a short time, not a lifetime.We are so proud of our son, and how he has made such progress, with a lot of effort from/by everyone of us.Has our life been ‘normal’? Heaven only knows, for who defines ‘normal’. It is different for each and every one of us.It is the support of folks like you and other parents who belong to groups like this one who are the most supportive to us. Yes, after all these years, support and understanding are still needed some days. Those days are getting further apart, but still occur.Keep up the good work you are doing. It helps a lot!

  • Thank you for this wonderful read. My hubby and I have ten year old twins, not biological, with issues, add, adhd, odd, sid, anxiety, depression, possibly mild fasd. I have gotten to where I just stay to myself for the most part. Even at church I attend but I don’t even try to make people understand anymore. It’s just wasting my breath. Even after 8 yrs of the twins being with us people are still telling me what I should do. I don’t get angry anymore, I just let it go in one ear and out the other.

  • Wow. As the mother of 17yo daughter with moderate cerebral palsy, you just articulate a lot of what I think when people say those comments. If only people would consider their words before they speak them. And yes, if only they would listen.
    Kerith Stull recently posted..Memoir Update

  • Erica

    Thank you so much for this wonderful article. I have heard all of these messages before and had similar internal responses. We are not alone.

  • Cari Nielsen

    Thank you so much for actually writing down and sharing what’s been going on in my head for the last 9 years as the mother of a special needs child! I especially had to chuckle at the Holland/Sudan comments… I am so SICK of that poem! I have been to Italy, and I have been to Holland, and they ARE both fabulous. This journey is NOT fabulous, and not like either Holland or Italy. I love my son, and he brings me immense joy, but I still don’t believe it’s “better” that he had his diagnoses. So thank you for publishing these thoughts and helping others like me to realize we are not alone!

  • Yes. Yes yes a thousand times yes. I too got the ‘Welcome to Holland’ piece more times than I care to remember. So many of us who have children with disabilities feel the way you have described here. I wrote about it myself a while ago: http://misebandia.wordpress.com/2012/01/18/choices-and-words-of-wisdom/

    Hugs to you all.

  • Worst comment we got was when our child was a few weeks old, back in the hospital with such a complicated diagnosis that doctors couldn’t agree if she’d pull through. A friend said, “I know you must be upset. I could barely sleep when Mindy was sick.” MINDY WAS HIS DOG.

    Thank you endlessly for this. Sharing.
    Laura recently posted..The Dart Collection

  • Kate

    Thank you. I hope you don’t mind if I share this. I understand being broken.

  • Rebecca

    Wow. So even if people are trying to be nice, it’s THEIR fault that YOU interpret their comments a different way than they were intended. So basically everyone should just shut up and not say anything because even the people who are being nice will still be villified in your mind.

    • Please feel free to disregard all of it and support people in whatever manner suits you best.

    • steve krausz

      The road to hell is paved with good intentions! The point of the article is to point out that some comments can be painful, even if not intended that way, and the author gives suggestions of what comments might be equally appropriate but not painful.

  • Anonymous

    Wow. I am not a parent of a disabled child, but followed a link to this article because I would love to learn the right thing to say. To understand the impact my words have and really discover how I can help people who are travelling this difficult path. I think I did learn that and will definitely apply some of what I have learned. However, I had NO idea that parents of disabled children struggled with thoughts of murder/suicide as mentioned in this article or that the thought of giving their child to foster care crossed their mind. Reading the comments, it seems many parents of children with disabilities really relate to the author and what she was saying. I think it’s important, (just as important if not more), that if you are raising a child with special needs and you are struggling with thoughts of abandoning your child or actually ending your and their life, you must get help, because you DO ‘love that kid so much’. It’s concerning that no one else is disturbed by some of the thoughts expressed in this article and the authors out right admission to having these thoughts. It almost seems like a cry for help. It is not a normal or healthy thought process to think or daydream about a gas leak or fantasize about having a garage so you can kill yourself and your family!

    • I assure that I am very disturbed by the feelings I had back then, and I did get help. We all, finally (psych care can be very difficult to access), got lots of help. But it’s true. Many parents have thoughts of throwing the baby through the window or other scary thoughts. It’s far more difficult than most people know. Fortunately, very very few of us ever act on those feelings.

  • Pam Allen

    Oh my goodness I can relate to this article. My daughter was born with extreme club-feet. The dr at the hospital said out loud “this is the worst case I’ve ever seen, I’m not sure if she will ever walk” from that day forward we have been hit with comments like that. She is 9 and she is walking, running and dancing. After several surgeries, physical therapy, casts, braces, and special shoes she can put one foot down all the way but the other one still wants to be stubborn.

    I think the worst comment said to me is: Thank god she is beautiful because how she walks isn’t going to do her any good when she grows up.

    Every week we hear stuff like ” aww look at her pigeon toe walk, why does she walk funny” and oh the looks we got when she would be in casts- both legs.

    The comments used to get to me but now I just chalk it up as people just don’t understand what they are saying is hurtful. I have bigger things in life to worry about, thanks though!

  • Barbara Carlson

    Anonymous: Yes it *is* normal to have such thoughts go through your head. My children were normal and I’ve said every parent has that moment in the middle of the night, when you haven’t slept for days, when the baby just won’t stop crying when the thought of putting a pillow over his head crosses your mind. And if they say it hasn’t, they’re lying. The difference is that you *don’t* do these things and reject the thought and keep on going. A friend of mine has a daughter with a particular flavor of autism (maybe some other issues I don’t know about). She quoted some statistic that 90% of people with children with that disorder kill their children. I don’t know if it’s true or not, but I don’t see why the woman would lie. There are certain problems that are so difficult, they are unrelenting and coupled with lack of sleep, it’s easy to see a person might wonder if dying and taking the child with you might actually be a viable option. My rule of sanity is what you actually do in the end. Just my 2 cents.

  • Sonja Cosic

    OMG, I hear all of these and more…
    Few more to add:
    Your are such a good Mother….
    and You are so Strong….

    I know some people mean well…but……
    After 24 years…It is still hard to hear some of these comments….

    • Tamara

      I actually take “you are such a good mother” as a compliment. To me it means that even though my life stinks at times and is so very difficult ALL the time, people actually think I am doing a good job. Me 18 year old daughter has multiple disabilities due to a brain injury during a heart surgery a week before her first birthday. I believe I am strong and, though I refute it when people say it to me, deep down I agree with them. The saying goes “what doesn’t kill us makes us stronger”. Well, if that is true then I should be able to bench press a bus by now. 🙂 And, while I believe now that God has blessed ME with a special needs child I do know some people who absolutely would not “handle it very well” if they were me. God doesn’t give us what we CAN handle, He gives us what we cannot handle and then helps us handle it.

  • Jennifer

    I grew up with a couple of limitations myself. Cerebral palsy and hydrocephalus. I can not remember how many times I was told that god never gave more then I could handle. Yeah I know I’m a bad ass! So much so that I pay for a doctors mistake on a daily basis. My birth was traumatic. He thinks I’m such a bad ass that even as I type I’m recovering from surgery to save my hearing which I lost after my son was born. None of this even touches on what my mom went through being my mom.

  • […] 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.  […]

  • Desiree

    I am a mother of a disabled child, and I’m not sure I fully agree with this article. It comes across a little bitter. When these things are said to me I don’t hear them in the way the article says. Most especially regarding the parts dealing with God. These things were said to me on many occasions and the words helped me, or if they didn’t help me, I was neutral to them and just smiled and thought ‘this person is just trying to help, they do care, but there’s nothing they can do and that’s ok with me.

    As a rule, I’m not in pain or anguish (unless my child is in the hospital) and the last thing I want people to think is that I am overwhelmed or can’t handle my family. I’ve also been lucky enough to have plenty of people in my life that automatically step in to help when needed, so perhaps I’m coming at this from a biased angle.

    The questions that are said to me that make me shake my head come from people who assume my son is mentally disabled as well as physically disabled. They ask things like “What do the doctors say? Will he ever be normal?” Even then I shrug it off. People are curious so I answer their question politely and remind them that he his functioning at a normal intelligence level, but lacking the fine motor to carry out some of the things he wants to do.

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