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…

  • Like you, I have heard these things from friends and family and teachers-ugh!
    Thank you for sharing 😉
    Mytwicebakedpotato recently posted..Preparing

  • I LOVE this, Adrienne!! You’ve said so very, very much–more than the words actually stated. The emotion this piece conveys both makes me weep from the despair I still feel sometimes and gives me hope knowing that I’m not alone because others have gone through what I go through. Thank you! ~ Bobbi
    Bobbi Parish-Logie recently posted..Drop the Pickle, Mrs. Wargun!

  • Yes. Very much so.

    For adoptive parents of special needs kids, I’d like to add one.

    Would you still have adopted him if you knew he’d be this way?

    What I hear: you got a defective one. Can’t you return him?

    I didn’t buy him. And no kid comes with a warranty, even if you birth them. then again, it’s almost like saying I got the dregs because I couldn’t have one of my own. But unlike you, I chose this kid. This one in particular. And he is my child. I’m his mom. Period. Close paragraph.
    Chrisa recently posted..What I Learned at Lollapalooza

    • Ugh. Yes. Much as I get the “how did you cause this,” you get the stuff that says you’re not QUITE his mom. Almost, but not exactly. Ridiculous. Our kids are our kids, however they came to us, and they’re generally not something we want to return (attempts to put Carter in foster care during very, very bad times notwithstanding).

  • Amanda Harris

    I feel as if you have ripped a page out of my own Book!! Thank you so much for posting this–you are spot-on!

  • Well said! Some of these apply when you have family members with debilitating/terminal illnesses too. When my mother (and later my brother) were battling cancer I can’t tell you the number of “cures” people brought me. Even after my brother had died, a friend proposed a cure to me. I was still in the early stages of grief and my (I hope usual) restraint left me and I called it “quack” science, whereupon she said, “Well, how do you know? He never tried it did he?”

    • Oh, wow. The insensitivity of that is…wow. (And yeah, I don’t think I knew just how much quackery there is in the world until I had a kid with a serious illness. Oy. There is SO MUCH.)

  • Wendy

    This was one of those posts where you go “yes”! I guess we are still in the suffering part and life is brutally hard and chaotic some days. I feel so utterly alone at times. I had some of those things said to me just this week.- when you are hanging on by your fingernails, you just don’t even want to hear someone spouting platitudes at you.

    • Yes, they’re too thin for real pain. I’m sorry you’re still in the hard part. I mean, it doesn’t get EASY, but I don’t know…you get a thicker skin, maybe? And eventually you find some people who know how to be with you, and that is a big help. Are you part of any online support groups? If not, I’d be happy to link you.

  • my favorite is “At least it won’t kill him.” Wow, really? Cause this isn’t a horrible thing to deal with every day. Something that didn’t make me wish I was dead some days. The anger was so bad I didn’t think I could live with it for much longer. It is like telling a soldier that lost his leg at war that at least he didn’t lose both, cause the lose of one really isn’t that bad!
    Maryann recently posted..Hallmark Making Memories and Encouraging Kids Gift Pack Giveaway

  • Nancy

    Here is one for the books ! Do you ever regret adopting her ? ABSOLUTELY not.

    • Ugh. Yeah. In fact, I did have some really dark times when I regretted having Carter, but one time somebody asked me if I regretted having him and I was FURIOUS. (Which may seem horribly hypocritical, but it is what it is. Sort of like you’ll harass your sister endlessly but nobody else better mess with her!)

      I do think adoptive parents deal with that more often than birth parents. As if birth parents didn’t have a choice, but adoptive parents went comparison shopping? That’s ridiculous. Our kids are our kids, however they came to us.

  • Gwen

    Thanks for posting this! My daughter has inattentive ADHD so all I ever heard when I talked to her teachers about any issues was, “But she’s SO well behaved!” (They don’t say that so much now since she has become increasingly frustrated with school) Then there’s the, “It’s just harder for some kids than others.” when I talk to friends about how hard school is for her. No, I won’t just “accept” that.
    Thank you too for being brutally honest about your feelings in the beginning. When my son was born, he had colic (I’m talking crying/screaming ALL DAY for 6 months, not just a “fussy” baby that ppl throw that term around) I didn’t bond with him for a long time and felt SO guilty. I would look at him while he was screaming and I was crying and just think, I see how mothers can leave their babies on someone’s doorstep. I loved him, but I really didn’t like him. Especially while he was screaming. He was SO LOUD and nothing I did could soothe him. Everybody knows that a crying baby just wants his mother, but not my son. He would wake up, and scream for hours until exhausted, he would fall asleep. I lived in fear of him waking up. I am sure now, looking back, that I also had undiagnosed post-partum depression. Who wouldn’t?? I would go to church and at the end of the service they would give an alter call and say, “Come to the alter and leave all your burdens for God.” and I would almost giggle as I thought, just what would people do if I calmly walked to the alter, placed my baby there, and ran like crazy out of the church? Nobody really understood and I never once heard another mother say anything so horrid so that was all the proof I needed in my sleep-deprived, guilt-ridden mind to convict me of being the “worst mother in the history of mothers”, which, alienated me even more. Once I got through that, I knew that there’s a dark side of parenting that nobody wants to talk about, let alone admit. I knew that it wasn’t just me, but still never heard another mother admit to anything so close to what I felt. THANK YOU for “going there”.

    • Carrie

      Gwen, when I read your post it reminded me of almost exactly what I went through when my son was a baby. He cried CONSTANTLY for over 4 months straight. I loved him but didn’t like him very much. I got to the point where I just didn’t want him. I was convinced that almost anyone would be a better mother than me. I figured that I was a horrible mother and I just wanted someone to take over. When I (rarely) got a chance to get out by myself I wanted to get in my car and just drive away and never return. I was later diagnosed with post partum depression. I started the meds and things slowly got better. But I will never forget that time of my life. Thanks for posting this. Even 6 years after it happened it still hurts. I hope things are getting better for you.

      • Carrie, yes, exactly! I was sure that I was a terrible mother. Absolutely convinced. That’s why I tried to give him away; not because I didn’t love him, but because I believed I was completely inadequate.

        Carter is 11 now and only in the past couple of years have I stopped having an anxiety reaction whenever I hear a baby cry.

    • Gwen, I hear you, and it is SO hard. Every parent knows what it’s like to deal with a crying baby, but a baby who cries for hours and hours, every single day, for months, is something completely different. It messes us up, breaks us. We go into a sort of survival mode that’s not like real life at all. Thank you for your kind words.

      • serena

        and so exhausting too. I was overwhelmed— if only he could point or tell me where it hurt? He was my first, and I had no idea what I should do…. so I took him to the doctor, not very helpful. It got to the point that I was so exhausted all I could do was put up the bedrail up on the other side of the bed, and lie down next to him on my bed. Thank you for this site; it shows me that I am not alone.

  • So powerful Adrienne and beautifully written.
    My husband lives with a rare facial nerve condition called trigeminal neuralgia which is described as ‘the most painful disease known to mankind’ by the medical profession.’ Our whole family has been turned upside down by this illness. Many of the experiences and tips you describe I have written about when talking about living with chronic pain. Listening without judgment is the one I go back to over and over again-because someone doing that means -they understand what they don’t understand! It means you are not alone. It means you can be honest and scared and angry in a safe place. All things we need to do sometimes in order to keep moving forward, when it feels as though we are drowning in quicksand.
    Gilly
    Gilly recently posted..How to Meditate When You Can’t Sit Still: The Ultimate Guide

  • Robin Weisbrod

    Thank you. You have said it all. I remember, to this day, walking in the rain, screaming at God. My daughter is not biological, she is my step granddaughter whom we adopted. I still struggles with not being able to “fix” her. I too, was on the internet night after night, trying to learn, so to be better able to help her. Well meaning people would say the damndest things. Especially telling me to parent her better…..LOL.

  • I had to share your post – here’s what I wrote:
    This could be “Dear people who do not HAVE disabilities”… reading it made me cry. I suppose they could be construed as tears of self indulgence or self-pity or whatever. Like she said, “bite me!”

    For me, this post was not only an affirmation (it’s lonely being disabled and not looking the part). But there was also acknowledgement. I know I inadvertently did say things when not knowing what to say to other humans who were dealing with whatever – trying to soothe and give comfort, trying to fix what can’t be fixed, just trying.

    • I happen to think some self-pity is a perfectly fine thing. It can take over and hurt us, of course, but sometimes we just need to acknowledge that it’s hard and that’s sad. Everybody love the hero stories on TV and they like to talk about the person who never voiced a single complaint, but most of us just aren’t like that. It’s OK. We get to feel how we feel, and thank God we’re not alone with it!

  • Deborah Diehl

    I was once one of the special needs children that your article is about. The concept of being an outcast to the majority or main stream is just not a new one for me, but this did not negate my responsibility to myself or those that I love to live a healthy life.
    I knew that my son would more than likely be predisposed to a combination of the special needs that both my husband and I had as children long before we conceived him. We both accepted that reality before we conceived him and prepared as best we could. Part of what makes accepting the reality of living a healthy multidimensional life with special needs (physical, emotional, mental, etc.) is knowing that the only standards you are living by are your own, and this was also true for our son once he was born. He taught us from the day that he was born that he would be doing the teaching, and that the standards are his. I honestly think that what you are asking of your friends, family, and the rest of the parental world is for a bit of honesty and compassion, rather than presumption because none of us walk the same path and to assume that we all have the same battles and victories in life is to assume that we aren’t living life at all.

    • Deborah, yes, exactly! Our children are not reflections of their parents, and they certainly aren’t products. They are themselves. People. Unique and wonderful, challenges and all.

  • (ps – Jennifer Cristini is my cousin and I found this posted on her FB wall xx and I forgot to say “thank you” for writing it!)

  • David

    Very interesting and enlightning, but it makes me reluctant to ever say anything to anyone in this situation if you are going to misunderstand my desire to understand, communicate or sympathise. Maybe that’s the intention.

    • Thanks? I think? My intention is not to silence anyone, but to show what is most helpful because parenting a child with disabilities isn’t something that anyone can understand if they haven’t lived it. There are many experiences in life like that.

  • Lisa

    I am 16 year veteran special needs mom. After 16 years these seemingly helpful, reassuring statements bug the crap out of me. Especially when I hear someone say them to a new special needs mom. I just want to smack them upside the head. But I refrain because I know in their mind they THINK they are being helpful. The Holland story is such a LOAD of B.S. for many of us. When my son was born and for the next 9 years I felt like we had been kicked out of a plain over the middle east, landing in a war zone and were either under siege or fearing when the next assault would be.

    My biggest Hatred is the “God never gives you more than you can handle” crap. I just want to look them squarely in the eye and ask “if that is true can you please explain suicide to me?” If that were true my son would not have ended up having to be put in residential care when he was 9 years old. I love that boy child more than life itself, I love his brothers equally as much. If God did not give me more than I could handle my son would still be living at home with us. So to those who believe God would never give us more than we can handle I say: “Up yours”.

    • Ugh, yes, and that is exactly what compelled me to write this. I overheard one of these spoken to parents who are new to all this (It was of the “all kids do that” variety) and I thought, people need to know. Those new parents in pain can’t answer because their poor heads are tumbling.

  • I can’t even begin to tell you how grateful I am for this post. How deeply I wish others would read and understand this…especially the last parts. It is so lonely…so very very lonely. I am sitting here in tears wanting more than anything to just hug you for understanding. I wish I had people like you in my life. Thank you…THANK YOU!

  • Elizabeth

    Your post is right on and also includes kids with mental illnesses, even though we don’t always think of them as special needs kids. Just say the word schizophrenia to someone and watch them start backing away. I’ve heard all of these statements and have come to realize that people want to help but they just don’t know how. It’s just so scary to them and so far out of their own life experience. I have learned to appreciate anyone who will just stand and talk to me about it, even if they use platitudes.

    • Elizabeth, yes! My son had a prenatal hypoxic brain injury, but the primary expressions of that injury are mental illnesses (bipolar with psychotic features, ADHD, GAD) and those things scare people. They’ve also heard lots of nonsense in the media about them, which is why I tend to lead with the brain injury. It garners a MUCH more sympathetic response, which is horribly sad since mental illnesses are illnesses like any other.

  • I have 6 kids. half of them are different. my oldest different kid was born to me. initially his only difference involved a bicuspid aortic valve. the first thing my mom said upon learning his diagnosis was, “what did you do during your pregnancy to cause this?”

    she could not fathom that sometimes these things, they happen.

    later on, once the bipolar, ODD, ADHD, and depression materialized, she no longer wanted him at her house. his sisters? fine, just not him.

    our 2 youngest were our foster kids, adopted with great joy. they both have fetal alcohol effects and ADHD. our son has reactive attachment disorder while our daughter has some physical issues. they’re both improving.

    and i’m tired to DEATH of hearing all of the hoop-de-doo you’ve so beautifully written about. i’m just a parent. they’re just kids–kids with a trauma background to be sure, but kids all the same. we’re just trying to do the best we can with what we’ve been given.

    but I can say that i’m supremely thankful for every normalish day that we get!
    Robin recently posted..I have no good excuse, so here I am without one

  • People who are the partners of people with disabilities hear these things (and things like them) all the time too. A well-written piece that speaks to a lot of the frustrations that are part of our “normal.”

  • Elizabeth

    One more thought….as frustrating as these conversations can be it does give us the opportunity to educate others and help build understanding.

    • Yes, especially for those of us who are past (or who are enjoying a temporary reprieve; no sense tempting the universe here) the confusing, chaotic years and who aren’t so vulnerable anymore.

  • Alyssa

    Thank, you, thank you, thank you. You put succinctly into words what I have been trying to express to others for years.

  • Amy

    I’m a teacher, and I wish every parent could have Deborah Diehl’s insight before they get the diagnosis. So often, I’ve been the person who pushed to get a child tested because I’ve seen the gap between their abilities and their achievements. I’ve watched kids struggle with emotional problems, with attention disorders, anxiety – you name it. But for so many parents there’s a wall of denial around learning what’s “wrong” with their beautiful child. I think it’s part of this fallacy that anything wrong with the kid is the mother’s fault – phooey!!!

    I’ve had the work of helping those parents through the stages of grief, and helping my students through their own confusion. And I have been blown away by the dedication of parents to their kids, no matter what their talents or challenges. Each of my kids (meaning, my students) is a cool, fun, unique person, and I wouldn’t trade any of ’em, no matter how hard a day we’ve had. (And by the way, as many as a quarter of the students in any middle school have a learning disability that’s going undiagnosed because they’ve learned to hide it rather than ask for help.)

    There have been times when something tragic or difficult has happened in our school community, and I’ve tried to use it as a learning experience in “what to say.” Teenagers especially are worried about saying the wrong thing, as if they could say something that would fix everything. (Somehow this just doesn’t get taught or modeled in our popular culture.) I tell them what they really need to do is listen, because that’s what friends do when a friend is in pain.

    So to every parent, grandparent, guardian, partner out there having one of those days: ((( hug)))

    • Thank you, Amy. The work you’re doing is SO important. Vital. You’re right; our culture doesn’t teach us how to care for people, but we need those skills so much.

      You touched on the guilt and shame that parents and people who have any kind of brain-based issue (learning disabilities, ADHD, schizophrenia, etc.) tend to feel, and it prevents us from asking for help when we need it. The key is in there – taking care of each other so that we can reduce the guilt and shame so that more people get help. Ultimately, that brings more people to their best possible lives.

  • Novel

    Here from a link on @scalzi’s twitter. Really moving and awesome post. Like the person above, I heard a lot of the same sorts of questions and comments from people–directed both to him and to me–after the health crisis that disabled my late husband, and then through his period of physical disability and death. I think this attitude is symptomatic, as you say, of an intense (and ultimately pointless) desire on the part of the speaker to make bad things the fault of the person they’re happening to (or around) so as to distance the speaker from any fear that they too are subject to the whims of circumstance.

    It is sometimes really helpful to be reminded, first, that we need to make sure we’re not inadvertently making things worse for the person we’re trying to comfort, and second, that just being there is a huge help–as long as you’re not saying stupid things!

    To David above: I have seen this particular complaint before, and it never flatters the person saying it. You’re being given an opportunity to learn things that can make you a better friend and a kinder person. Reflect on any previous inadequacies in silence, and don’t make them someone else’s problem.

  • Anonymous

    I would agree on most all points BUT its better to be spoken to, than completely ignored. Speaking for myself only, its no easier for parents of special needs children to know the RIGHT way to say things – in fact, it may be even harder because you don’t want *your comments to be construed as “we’re in the same boat”.
    My feelings or my “take” on being a special needs parent have ALWAYS isolated me from the support groups simply because I understand that “outsiders” take their cues from ME in how to approach. I know that’s hard to hear, but it can be life-changing if you can view it that way.

    • True, ignoring people is never the way to go (anyone who has grieved has felt the sting of isolation). However, there are times in our lives when we need some people who are able to understand us. *Now* I can show and tell people what my family needs. *Now* I can let well-meaning but off-target (and even hateful) comments roll off me, but back when we were confused and grieving, things were different.

  • Thank you for sharing this I really identified your perspective of the Holland story, how we are instead dodging bullets and such. So true! I also appreciated your list of what to say, just what we need.
    Mama Bear recently posted..9th Annual Mood Disorders Day in Stanford

  • Thankyou so much for this post love. Everything you wrote really rang a bell with me. I don’t have a child but my partner and I are both newly disabled and we get all of these comments too, it’s really weird to see that the parent/carer of a disabled person gets the same kind of comments as a disabled person. I would guess you’d get comments that hint at taking better care (seriously, who in their right minds would think you’d not try and keep your child as well as you possibly can, or in our case, ourselves, especially when they’re ill/disabled) but I was really surprised by some of the religious comments you get. Take care of yourself and keep writing it all down lovely, it’s really good to hear the careers view of things, thankyou xxx

  • Pat

    It wasn’t my intent to post without my name – but like David said – you are just (unwittingly) placing further distance. It would be a disservice to ALL parents if someone hesitated to reach out after reading *this particular blog post.

  • Elizabeth

    Actually, I think David brings up a good point. We can’t ask for sensitivity if we aren’t willing to be sensitive to how those who are not in this experience feel about the conversation. Again….it’s an opportunity for dialogue and building of understanding. (I think my phone got carried away so I’m sorry if this response comes up twice!)

    • Pat

      Having recently just lost both my parents, I am HORRIFIED at what I have said in the past to those that suffered a loss. Simply. Horrified. Now, can I bring the understanding of that loss to the masses? Certainly NOT. Experience “brings it ON” like no other lesson.
      Everyone on earth lives in their own dream, shaped by experiences personal to *them. When someone says something to us, and we take it personally, we are forgetting that they are speaking from THEIR experience, not the reality of our OWN experiences. REFUSING to take things PERSONALLY relieves us of that pain. After all, how can ANYONE know what you are feeling… what it is LIKE to live your life?! The TRUTH is that they cannot. They can only project what is inside of THEM. Don’t give your power away by letting someone’s words hurt you. If something they said is particularly nasty, know for a FACT that it comes from THEIR own pain and has NOTHING to do with you! People in pain like to get a reaction. REFUSE to “take” their poison. It will be the BEST gift you could EVER give to yourself!

  • Pat

    I skipped the grieving process entirely. I was told my daughter was terminal (13 months) then she outlived the diagnosis (celebrated her 23rd birthday this year). That gives me a point of view that “fits” with neither “side” of this coin. I STRUGGLE with her needs, but I CELEBRATE her life. Daily. I have no time to analyze other’s well-meaning (or not) intentions. But I BEG of you not to make others hesitant to reach out to “us” by giving them some kind of script. It may be what you think you may need at this time, but in reality – we cannot change others. We can only change ourselves.

  • Cd77

    I had someone tell me “I’m so glad I was blessed with children who have no health problems!” she could have just said “oh man I’m so glad I’m not you!”

  • bmt

    Thank you. Just thank you. Stuff like this is why I usually just keep all my mom-to-Autistic-kids venting to myself.
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  • Adrienne,
    Would you email me privately.
    Thank you.

  • Adrienne, Would you please email me privately.
    Thanks for a great letter. Hit home for me.
    Dianne

  • Daba

    yes. I have a child with “invisible” disabilities (aspergers, GAD which manifests as ADHD behavior). I have been told pretty much everything on the list.

    The one that gets me the most is “but he doesn’t seem/act/behave like he is autistic”. Yep, thank you tons of therapy and the quirkiness of his disability. He doesn’t have any issue with eye contact and he is very charming and socially comfortable.

    However, he also has minimal ability to read body language, tone and idioms correctly, which causes him HUGE issues in dealing with other kids and in school. he also gets easily overwhelmed and has minimal control over impulses, especially when tired, hungry or anxious.

    No, the one that gets me the most is the “have you tried {insert random thing they heard about}”. Unless you are a specialist or a parent with a child with similar disabilities, trust me, you aren’t telling me something new. I probably have studied or tried whatever you are suggesting.

    What I hear when you say that statement is “Clearly if he is still having problems, you haven’t tried hard enough to fix him.”

  • Barbara Carlson

    I don’t have a small child with disabilities, but I have a grown son who was paralyzed from an accident. So *much* of what you mentioned up there really resonated with me, and I’m thinking maybe those are universal truths that could be applied to many situations … injury, death, illness … pretty much anything bad that happens to someone you love.

    The worst thing someone said to me, when I was venting about something or other (usually how much hassle it is to jump through all the hoops to get him services). They said, “You should be thanking God that he survived.” Wow. What I heard? “You’d better stop whining or God is going to change his mind and take him away…”

    • I read this last night (soon after I gave up on replying to every. single. comment. because yikes!) and my jaw came unhinged. I mean, wow. How could anyone even consider that you WEREN’T thankful that he survived? It’s still a shock and a terrible trauma for your whole family!

  • Adrienne – your post has tears running down my face. My children are both patients at Great Ormond Street Hospital – the phrase “oh that’s such a GOOD place to be” upsets me deeply although I have my standard reply now about how no parent would ever want their child to be in the situation that requires care at GOSH but if they do, we’re fortunate to be so close.

    I find the “well they’re not as bad as some other children” so frustrating and again upsetting – as well as the “oh, so they’re inherited it from you then” line – which is true but I didn’t know I had the condition when I fell pregnant. It is almost as if I am purely to blame – like you would force a disability on anyone out of choice.

    The other one is “oh, will they grow out of it?”
    We hear – well clearly you haven’t dealt with it now so at least is mother nature going to have a go at doing what you can’t?

    Thank you so much for writing this – I shall go and dry my eyes
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  • Anonymous

    As the parent of a child with disabilities, I can definitely relate to this list. I think it’s important to remember, though, that in MOST cases, these people are trying to be helpful. I think this is especially true in the case of “He seems normal to me/All kids act like that.” I think in this instance, the person isn’t telling you this to make you feel like you’re overreacting, but rather to reassure you. I’m not saying it’s the right thing to do, but I think that most times, this person is coming at you with love.

    “What medications did you take?” is just TERRIBLE. It’s bad enough that I ask myself similar questions all the time. Did we do everything correctly? Was it somehow our fault? I know in head that it wasn’t our fault, of course, but sometimes it’s hard to make my heart believe it.

  • Thank you. I am sick to death of being called a saint. I am not a freaking saint. Having my daughter wouldn’t make them a saint, either; what do they think they’d do? Quit? Like it’s that simple. Quitting would be more logistically difficult that going on. I want to turn into a werewolf and bite the throat out of everyone who calls me a saint. But I can’t. It’s just not socially acceptable. Sigh.
    Kerrie recently posted..Captain Beautiful Mom

  • Iriia

    I grew up with type 1 diabetes. My mom had a lot of support but also a lot of ignorant people. She is my rock. I now have bipolar and hypothyroidism. She gets me through my day. I feel having a supportive mother is essential to my life. I had to help straighten her out a bit though because I feel she has borderline personality disorder but I read lots of books on that to help her with herself. In the end she’s doing much much better. So am I. No more fighting. My bipolar has finally been diagnosed and treated. Thank you for your blog because my mom probably heard it all. I’m on SSI but I haven’t quit looking for a job necessarily and am trying to find one that suits me. I think I’ve turned out alright for dealing with what I deal with. Hopefully people around me can see that.

  • Iria

    To Kerrie, you aren’t necessarily a saint. You never were a saint. You don’t need to be a saint for me or anybody else. I think you’re fine without having to need to turn into a saint. I prefer you as a werewolf.

  • Thank you for writing this. I feel a little less alone this evening. 🙂
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  • julie

    My favorite part because I can relate and resemble this more than you know. (I stole it, personalized it and posted it to my facebook page btw.) Giving you credit now.

    “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.”

  • steve krausz

    Can I use parts of your article in our next quarterly newsletter? we run a free adoption exchange that finds adoptive homes for Jewish kids with special needs (http://www.jcan.us) and I am also the Dad of three kids with special needs 1 bipolar, 2 with Down syndrome), so I appreciate how badly some people try to offer unwelcome advice!

  • I can’t tell you how many times I’ve heard the “But she looks fine! All kids do that!” My daughter is very good at masking her autism if you have a short meeting with her in public. You might not pick up on the quirks. But these people don’t live with her everyday. They think we’re making it up, despite the reassurances of several neuro doctors and psychologists that she most certainly has autism.

    Your tips for helping parents of special needs kids are spot on. I was especially struck by the line “Parenting a child with special needs can be profoundly lonely.” We are lonely as we’ve watched so many friends move on because we were too busy with our child’s needs, and because we couldn’t find a babysitter who was qualified to watch our daughter. The few friends we’ve somehow kept close are golden to us, although I mourn for the friendships lost due to my hectic life.

    Thanks for writing this post – it states what so many of us think on a daily basis.
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  • I’ve had the tab open and read this approximately 17,000 times since you published it, and I still don’t have the words to tell you how important it is to me.
    Your words are so perfect.

    Thank you.
    Dawn Beronilla recently posted..The Silence Does Me In

  • Linnea

    It’s like you took a peek inside my heart and wrote down all the things I couldn’t express.
    Thank you.

  • Anonymous

    I have disables too

  • Michelle

    I have had these said to me. God doesn’t give you anything you cant handle, like I am some sort of freak. People who don’t walk the life simply don’t get it. Been told, I don’t know how you do it, and I could never do what you do. First of all, I don’t do it alone I have God who gives me strength and IF YOU were placed in my situation you WOULD for sure do everything I AM already doing. After having Cayden I lost most my “friends” it was a hard moment to deal with. I just wish there was more compassion towards us. It is NOT easy, but we LOVE what we do and the children we do it for. Thank you for writing this, I wish the whole world seen it. You have said it PERFECT, the way I have been wanting to say it. <3

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