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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.

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

  • Serena

    Well, it’s another school year. Here we go again…. I want to speak with the guidance counselor, but she isn’t returning my phone calls. Perhaps I’ll just go down to the school so she can’t ignore me, as she has since last May. She had my daughter’s IEP meeting without me. I would really like to call her an ugly name, but decorum prevents. (okay, I’ll give you a hint— name for a female dog). I’d like input on other parents and what one does one do when this happens? Please help!

  • Jennifer

    I am so sick of people begging for Pity because they are cursed with a child with disabilities. Personally, I’ve heard some real doozies about having a disability myself.

    • serena

      I hope you didn’t mean to be rude, Jennifer? We are all her for support. If you don’t like this, don’t read it. We are “begging for pity”, just commiserating with others. Yes, I’m disabled, and so are my two children, but I don’t “beg for pity”. I must admit your post has upset me. And while I’m not a violent person, I ‘d gladly slap some sense into you.

  • Shane

    So Serena you’d gladly slap some sense into Jennifer? Though she has a disability but chooses to not to be “woe is me” like everone else on here? I have a child with cerebral palsy and choose not to feel sorry for myself or expect others to feel sorry for me or her. If the way every one on this board chooses to feel is making sense, then I thank God I am lacking.

    • Serena

      I apologize. It’s just been a very hard time for all. I’m exhausted… and my handicap is progressing. Everyday, I watch as my abilities diminish, and then my son was in the hospital, I had surgery… does it ever end. Yes, I’m short tempered due to fatigue. I need sleep…

      Again, I apologize for my bad behavior.

  • Ros

    I’m sorry to see this descending into “them” (those who don’t have disabilities) and “us” (those who do). I’m proud of my daughter who has multiple disabilities. I’m proud to be her mum. I don’t want anyone to feel sorry for me for this amazing gift of a daughter. But it would be just plain silly to pretend that my life hasn’t been harder than my friends whose children don’t have disabilities. For 22 years until she left home I was up 6 or 8 times a night attending to her needs when she wasn’t away at school (i.e. permanently until the age of 12 and then every weekend and all school holidays). My husband never achieved promotion because he was in a continuous state of near-exhaustion. And I now live with permanent back pain from the physical strain of a child who couldn’t stand or even sit unsupported. It would be silly not to acknowledge these realities. Do I regret any of it? You bet I don’t. I am proud of all that my daughter has grown up to be, and she was worth every sacrifice we invested in her. But I would feel hurt and slighted if I thought she disrespected that sacrifice or regarded me as having no reason to feel I worked a lot harder at motherhood than some other mothers did. If you are raising a disabled child, be proud of yourself. You’re doing something extraordinary, and far harder than most other people will ever do. And if you have a disability, and were raised by a mother or father, be proud of yourself and all your achievements, yes, but don’t disrespect the huge amount that parent did for you, without which you probably wouldn’t be where you are today. In short, let’s have a little mutual respect in both directions.

  • Jennifer

    The last comment that came through my email talked about the sacrifice parents go through for their children. My mom went through Hell right along with me. I could not be more proud of her strength. Disability isn’t easy on anyone. Parent, child or an onlooker. Parents feel alone. I feel pushed aside by many” friends” who don’t understand. I have hydrocephalus and more recently hearing impared. Many people who can’t relate feel nervous about saying or doing the wrong thing. They truly don’t want to offend.

  • Beverly V Theil

    I have been following this conversation for several months and am disappointed that it seems to be deteriorating into an “I’m better at parenting/more deserving of support/you are less able as a parent/who do you think you are/etc.”

    Parenting is a tough job. Children without disabilities can be difficult. BUT – in addition to all of the run-of-the-mill parenting difficulties the parent of a child with additional needs has a daily juggling job from which there is no escape.

    1. Meeting the needs of other children in the family (the other child who wants to play soccer, but there is no time to drive to and from practices or games because the child with additional needs has a doctor appointment/therapy hour/etc. Even with a split personality you can’t be to two places at the same time. You can’t be driving one child to therapy fifteen miles to the east of your home at the same time you are driving the other child fifteen miles west to a soccer practice. If by some chance an understanding fellow soccer parent offers to drive your child, you still aren’t there for that child when he/she is playing soccer. You aren’t there at the sidelines; you aren’t there for that child. And you feel – at best – that you are letting that child down; at worst you feel you are a failure as that child’s parent.

    2. Finding time for you and your partner. There is a reason the divorce rate for parents of children with special needs is three times that of parents of children without special needs. Keeping your child alive – sometimes literally – becomes all consuming. All too many times there is neither time nor energy to be a couple. One of you is working outside the home trying to make enough money for all the everyday things – food, clothing, shelter – and for all of the things the health insurance doesn’t pay for; all the while feeling you aren’t doing enough to help your partner who is staying home to care for your child.

    3. Never having a full night’s sleep. Having to get up to do midnight feedings or inhalation therapy, or breathing tube cleanings or whatever it takes round the clock to keep your child alive.

    4. Having to explain to friends and family that you can’t go out to dinner, to the baby shower for your cousin, to the theater. Explaining that you can’t “just get a babysitter!” There is no way to teach even a very diligent 16 year old babysitter how to tell the difference from the breathing sound that means “I need my trach tube cleaned” from the “I’m about to stop breathing” sound.

    Having a pity party? NO. Just living in a different reality. Different, but very real.

    If reading posts from people who are living a different reality than yours offends, disturbs or irritates you I have a simple solution. Quit reading.

    But before you do, I’d like you to remember the words of Mother Theresa “Sometimes I wish God didn’t trust me so much”. For now, cut others a break. Who knows, someday you may find yourself – or a family member – trusted too much by God.

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

  • Thank you. This is it EXACTLY! ! just thank you

  • […] Taken from Adrienne Jones.  Her blog “No Points For Style”. […]

  • Thank you so much for sharing your own raw account of your feelings and what you have gone through.I am so glad to come across posts like yours because it is always great to have perspective on the best ways to speak to a person going through an ongoing uphill battle. Again, thanks for sharing!

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