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…

  • stillsad

    I have read the blog and many responses. I too feel that people can be insensitve, selfish and just plain cruel. I also think that some things said are meant to be helpful even if they aren’t and this can be incredibly frustrating. I know that sometimes it gets all too much for me and I cry. I also count the blessings in my life and can be joyful. However does one ever stop grieving fully for one’s dead child or another child’s unrealised potential? Even with acceptance the sadness and hurt is still there and sometimes surfaces. I too went to counselling which did not help as it could not change the situation. The advice to be there and listen and to help by doing what you can see what needs to be done is good. I still think of my good friends who came in saw the house an absolute mess one day and got in there, cared for the kids and cleaned the house while I had a good sleep. it helped immensely and I am still grateful year later to those friends who helped me when I was in the pit of my despair.

  • Richard Roberts

    I’d only mention that I have two autistic children who are the light of my life, and although my son is 21, I am still hoping for the day when I may be able to converse with him easily. And my dear wife has a neurodegenerative disease with is stealing her mental capacities bit by bit. so yes, I understand what it is like to deal with disabilities, and my whole professional life is aimed at helping others to deal as best as possible when faced with a child with disabilities. I’m afraid I am a bit on edge from time to time, and I may spout out something which I can later see was inappropriate. And I am always happy for people who can take comfort in their religious beliefs. Others do not have that belief system to rely on.

  • Anonymous

    Thank you. Thank you. Thank you. I can not say how annoyed I get when ‘God’ is brought into the factor and many more of what you have said. Very well said. Thank you once again.

  • […] one and I had to share it here. It’s very truthful and soul wrenching. Thank you, Adrienne of No Points for Style, for sharing […]

  • Jacqui

    Well said. I only wish my family got it. I think that is what is the hardest for me. I can’t tell how many of these things were said by close family members and how lonely it can be. Thank you for sharing what a lot of us parents feel. I don’t feel so alone.
    Jacqui

  • Thank you for this. Sometimes I feel overwhelmed.
    Samantha recently posted..Baby Veronica…another “Trail of Tears”?

  • Dianne

    You forgot–” I know JUST how you feel. My (cousin, aunt, neighbor, teacher, etc) had a child with the same thing!” Excuse me???? How do you know exactly how I feel? Did you cry for 3 days after your child was born? Did you ever have to take a child to physical therapy twice a week? Did your doctor tell you it would be OK to put your child in an institution or up for adoption?
    I ALSO HEARD, “Well, at least you know he will never have to go into the service!” The best one yet was a woman who told me that a complete blood transfusion would cure Down Syndrome. I understand that people are trying to be nice and sympathetic but they really need to think before they speak.

  • Emily S

    Thank you for writing this gem! I needed to read this today.

  • Lynn Loring

    One constant theme I read here and other places, along with my own life is ISOLATION…I think people are basically nice (maybe), but also basically selfish. What I mean by that is if it goes beyond their comfort zone they are blind. Many are not taught to inquire and look beyond them selves as children so have no knowledge or social grace to connect intimately…which is what we desperately need as care givers.

  • To Adoptive Parents

    Very important, yet intense dialogue happening here. So, I’ll LIGHTEN THINGS UP A LITTLE with a familiar quip in the adoption community.

    So … there is this Mom with 2 small girls, one biological and one adopted, outside playing with her two daughters in their back yard. A woman neighbor, not meaning to be insensitive but certainly naïve, asks the Mom, “Now which one is your “real” daughter and which one is adopted?” The Mom just gives her a pleasant smile, and says “You know, I don’t even remember.” Amen!

    On not so light level, as the mother of our adopted “forever son” with Special Needs from an Eastern European orphanage, I am so very, very tired of hearing “He’s so lucky!” My response is always, “Well, I think we are the ones who are lucky and blessed.”

    • Amen! So very well said! I have tried to explain to people that we are the lucky ones as our son has saved us from never knowing the joy of being parents. I did have a relative once tell me that it’s so sad that my son has special needs… I flipped out on her and demanded that she tell me one thing that is sad about my child. He’s loved, has friends, is healthy – what is sad? I hate stupid people.

    • Jenn

      I adopted my DD with SN, too. I here that one all the time, and I always respond the same way: “I’m the lucky one.” or something similar.

  • Michelle

    I would like to add my favorite stupid comment, “It could be worse” As they tote their 2.2 perfect kids to their next event! I loved reading this one I particularly loved was about the Welcome to Holland. As far as disabilities go I think we did land in Holland, but reading about Sudan…I laughed aloud with you. Thankfully you have a sense of humor I am sure it has been a life saver! God bless you!

  • Loretta

    What you wrote speaks volumes!! I wish I could have given it to all my friends and relatives when my child with a disability was born almost 30 years ago. The one I hate most is the one that infers you had something to do with it happening. “It was probably because your husband drank too much”. That was my favorite. I mean, it couldn’t have been on OUR side, right? They don’t realize that being the parent of a handicapped child means you are at war everyday. You’re in the trenches 24/7. You fight with insurance companies, school systems, sometimes even your own child when he refuses to put his back brace on. You are at war with your emotions. They are tearing you apart everyday. There are times when you’re totally broken and don’t want to live anymore because of the pain, and times when you are filled with pride and joy. I remember my son’s graduation from pre-school. He proudly walked with his braces and crutches to get his diploma but he fell on his way and everyone rushed to help him up. He got up and continued the rest of the way fine but my heart broke in a million pieces while I kept a smile on my face and waved to him like the proud mom that I was. My heart broke as he sat and watched his older brothers play hockey. He could tell you what the score was in the third game of the world series 5 years ago, but he could only be a spectator, not a participant. My heart was also filled with pride when his brother, scoring his first varsity goal, came over to the glass where my son was sitting in his wheelchair to give him the puck. My heart broke every time other children would just walk up to him and stare at him. My son had 10 painful operations by the time he was 12. Numerous body casts. Seeing your child wheeled into the operating room, the hours in the waiting room, feeling helpless, and then seeing him in the recovery room looking like he was in a 10 round fight tears you up inside. Many people with the “intact” family cannot fathom what you are going through. I had a fundraiser to raise money for a van with a ramp that would accommodate his wheelchair and I could take him places and I remember my side of the family asking (when determining how much to contribute) how much the other side gave. UGH! If you can get someone to take care of your child for a night so you can get out – that person is an angel from God. I never had that. My son would beg to spend the night at his cousins’ house who were around the same age. The cousins had spent many nights at our house on sleepovers. But no, because of his leg braces and crutches, it was too much work for anyone. He was mentally fine but just needed a little help with getting on the toilet or a little extra monitoring to make sure he didn’t fall while ambulating with his crutches and braces. My own twin sister said,”I don’t know how you do it…I wouldn’t have even taken him home from the hospital”. That had to be my favorite. When he was 16 and wanted to drive the rampvan himself, I started looking into schools that would teach him to drive a modified van and I looked into funding for getting the van modified as it cost thousands of dollars. My husband at the time was against it and said, “don’t fill his head with ideas that he can drive”. My own family questioned whether or not I was crazy. Well, despite everyone’s negativity, I always taught my son to reach for the stars and I continued to pursue it. My son’s dream was to drive to high school like the other high school seniors. While he was at the rehab facility for a week learning to drive the van that we finally got through fundraising efforts and a van modification grant from our state, the high school saved a space for him in the parking lot. When his instructor called me to tell me they were on the way home (an hour drive from my house) and he told me that my son was driving, it was one of those “filled with pride” moments. The day he got his drivers’ license he was so happy and I was happier than any parent whose child just got their driver’s license could possibly be, because of all we had to go through to make that happen. Two weeks before the end of high school classes, my son got his driver’s license and drove his modified van with zero effort steering and electronic gas and break to school. As I looked out the kitchen window the day he drove to school for the first time, tears just started to flow. I was scared as any parent of a child driving alone for the first time would be. But I just said to myself, “Go with God, Matt”. He went on to graduate from college, get a full time job as a director of a department at an agency that helps handicapped people, got married to an able bodied girl he met at college, bought a house in 2011, and just bought a dog that they both love. Being the parent of a handicapped child has its rewards, but they are always hard fought battles to get them. I guess it’s why we appreciate them so much more.

  • Agree on the God one and the Welcome to Holland one! I’ve blogged about both of those topics (from a male perspective) on my blog at http://www.dadsofdisability.com

    Cheers!

  • Jenny

    Articles like this are so frustrating. Why are parents of disabled children so incredibly self centered and self focused? They want everyone to bend over backwards to accommodate them and their kid. Don’t you know that EVERYONE has their battles? It’s not all about you, all the time! How often do you reach out to your friends to find out how they are doing? How often do you even know what is going on in anyone elses’ life except your own?

    These questions and statements are made to people who have lost loved ones or those diagnosed with terminal illnesses. Yes, there are things worse than autism or other disabilities. SMH. I am so sick of the ‘pity me – accommodate me’ articles like this one from autistic parents.

    • Barbara Carlson

      A lot more people than just those with children who have autism have said they identified with this article. When did anyone say “pity me”?

    • Jenny: Wow. The assumptions in this comment are legion. I could devote 2,000 words to unpacking them but I won’t. I’ll just tell you this: I care very much about the people in my life, and as part of that caring I hope to support them in the best possible way. I seek information about how to do that. What is most helpful for a person who is grieving, facing illness, the victim of a crime, jobless, etc.? I’m trying here to share information that would be helpful to me if I was an outsider, trying to offer support. Please feel free to disregard everything you have read here and support the people in your life in whatever way you deem appropriate.

    • Serena

      Jenny! Go away! No one wants you here. You are being hurtful, not helpful. How many disabled children do you have? Noone ever watches my kids or helps. So,yes, it’s about the children that ” will never grow up.” You would be amazed at the so-called friends that will ditch you or not return your phonecalls. Those same “friends” act like it is contagious.

    • Richard Roberts

      Jenny, the stupidity of your comment is mind-boggling. There is nothing written here which says “pity me”, not you because you drove drunk and killed your infant daughter, or your son was molested by your brother, and you suffered. Or whatever the hell you think happened to you or your loved ones was far more painful than the suffering of those who have relatives with serious disabilities. You call these people self-centered, because they are watching their children degenerate before their eyes because modern medicine has nothing to offer them? Because they have repetitively been given boneheaded harmful medical treatment from incompetent physicians which in some instances have destroyed what capacities their loved one has? Really? Because they reach out to each other for comfort from another human who really understands what they are going through? Because they are constantly judged by know-nothings like you?
      Screw you Jenny. Go vent your stupidity elsewhere.

    • Janet

      Wow Jenny, I did not pick up at all on the author being autistic.

    • Becky

      Jenny my child does is not autistic but has special needs that are not any better at 20. I have had personal experiences that were awful. I have lost loved ones. I have had family members with cancer. I have found it is easier to accept someone has cancer or passed away. People expect these things. I never once thought when I had my child I would still be taking care of her at 20. I had dreams of what she would grow up to be. When those dreams could not be achieved, I changed my goals to something that was reasonable. Even with the realization that goals needed to be changed it is still heartbreaking that things are the way they are.

    • Jenny I agree, when I started reading the article I felt bad and guilty most of this things I’ve said to people, specially My sister who has a disable baby.. I always thought as me giving them encourage and reminding them they’re not alone and that GOD is there with them.. So sad they think like this not even knowing the other persons intentions.. Now, I’m scared to say something and even teach my kids that special kids are angels with special parents.. Geesh..

    • Kiki

      Jenny I agree, when I started reading the article I felt bad and guilty most of this things I’ve said to people, specially My sister who has a disable baby.. I always thought as me giving them encourage and reminding them they’re not alone and that GOD is there with them.. So sad they think like this not even knowing the other persons intentions.. Now, I’m scared to say something and even teach my kids that special kids are angels with special parents.. Geesh..

  • Alysha

    Thank you. I am the friend and I hope that those phrases have not come out of my mouth. I appreciate your honesty and your advice. Sometimes I feel like parenting is this big competition made worse by social media. Most of us are just trying to do the best we can. Best wishes to you and your family!

  • Loretta

    I don’t really understand Jenny. I’m trying to, though. I didn’t get that any author was asking for pity or that they seemed self centered at all. Just sharing experiences and asking others to be mindful of what they say or expect of parents of children with disabilities. Surely everyone has experienced some sadness or tragedy of some kind in their lives. Rather than self-centered, I consider parents of a disabled child to be the most un-self centered (I know that’s probably not a word!) people I have ever had the pleasure to meet.

  • christine

    Thanks so much for writing this! The comment I hate is (when someone hears she has a genetic disorder), “How long does your child have to live?” That has got to be the most insensitive question on the planet!!!

  • Sara

    As a parent of a child with serious medical issues, I hate when people bring up faith and assume that I agree. I also hate assumptions about her needs, prognosis, or the cause. I feel that what we need most is someone who can bear to be with us in the moment. In whatever pain or fear that is there. A friend who can bear it with us makes it bearable instead of the loneliest moment ever.

  • […] necessary as breathing to her. This blog is reprinted with permission from Adrienne’s blog, No Points for Style. I read this piece and found it incredibly meaningful and helpful, and am so glad Adrienne was […]

  • Beverly

    After a brief 5 days away from my computer I returned to find unbelievable vitriol, ignorance and smugness dumped on a parent who was honest enough to say that all is not “happy, happy, joy, joy” when you have a child with disabilities.

    I, for one, appreciated her honesty. My boys had a correctible problem (a form of club foot). There was a light at the end of my tunnel. Even knowing that eventually (7 years in one case)their problem would be solved there were days when I just wanted it all to go away. God didn’t give me more than I could handle? Well I wish He had had less faith in my abilities.

    The insensitive questions and statements – “is he retarded, too?” when looking at my child in leg braces; “what did Mommy do to you?” when looking at my child in casts from his big toes to his hips.
    I can’t imagine what it must be like to put up with those types of stupid comments relevant to your child for years.

    To those who feel you should “suck it up buttercup”. Who is going to take care of your child when you are unable to or when you die? Have you planned for that? or do you think you are so in control you will live forever?

    One way I responded to having children with problems was to incorporate a non-profit to provide housing and support services to disabled and developmentally disabled adults. I realized there were parents for whom caregiving would be forever, but they would not live forever. What could be worse for a parent than to realize that the world is not accepting of their child and that they will not be there to insure that their child is safe and cared for? I wanted to provide a safe place for their children and have for 36 years now.

    I have listened to parent cry when they realize they are no longer able to care for their child and their extended family wants nothing to do with their adult handicapped child (not even the siblings); begging me to please find a place in one of my supervised homes or independent living apartments for their child.

    No one, not even the parent of another handicapped child, should judge how another handles their unique and personal situation. But, we should all remember that no one gets out of this life alive, so we need to be kind to one another while we are here.

  • Dianne

    I posted earlier about some of the things people have said to me. I read a post that said they see a lot of loneliness among the parents. Another said we seem to be self centered. As to being self centered, we couldn’t do the things we do for our children if we only thought about ourselves. Most of us are the same as everyone else, we just want our child to be treated equally and fairly. We don’t want our kids to be bullied. As to being lonely, my older son is a genius, truly. The school district held a meeting for parents of children with high IQ’s when our genius son was 6. We found nothing there but “MY CHILD this and MY CHILD that”. Every parent there seemed to attach their ego to their child’s IQ. No one wanted to share resources or ideas. They all separated themselves as elite because they had a super special child. Thirteen years later when my younger son was born with Down syndrome, it’s amazing how many ‘friends’ distanced themselves from us. Only true friends hung in there with us. When our son was 6 and we joined Special Olympics, we found a lovely group of people who welcomed us into the ‘club’ of parents with special needs children. We had a mom who could alter clothes so they would fit the kids and she did it for free. I became the lady who hemmed just about anything. Parents would make a meal and take it to another parent to give them a break from cooking. They shared their resources for where to buy extra wide shoes, extra small clothes, who was having a sale, what teachers were the best. We became a big, loving, caring family. We moved from that town 6 years ago and many of these people have stayed in contact with me. Their children have too! We aren’t perfect and I’ve seen too many parents who didn’t take care of their special needs child, but most of us really connect with each other and respect the time and effort that goes into raising our children. Don’t pity us. You can offer help with a true and open heart, but understand that we really love our children. Offer to babysit or surprise someone with a meal sometimes. Just let us know you care.

    • Dianne, I love this. We, too, found a group of parents whose kids had diagnoses similar to our son’s, and it saved us. Those people are the ones who always get us. They’re the ones we call when everything goes to hell because they don’t have to ask how we feel, and they are the least selfish people you could ever hope to meet. Yes, we all go to schools, doctors, etc., and demand that our kids get what they need, and we go to our friends and neighbors and churches and ask for help, but that’s not selfishness. That’s doing what’s necessary to create the best possible life, and whenever and wherever I can I pay that forward. Right now, I CAN pay it forward, but there are times, when life is a crisis, when I can’t, and that’s OK, too. Sometimes that’s how it is. I hope more and more people will understand that. We don’t want pity from anyone, just kindness.

  • Jennifer

    Everyone wants to be included. My son has a hard time because no one wants to deal with the kid with the “different” mom. It hurts him. And I hurt for him. I am lucky that he was born healthy and I don’t take that for granted. I try to help others when ever I have an opportunity. Adrian, correct me if I’m wrong but this was more than likely written out of frustration? Trust me, I can relate from a child’s stand point because my mom was in your position with me.

  • Erin

    Well said and very relatable. I enjoyed reading it.

  • Brandy

    I love you. I just absolutely love you!

  • Mary

    Am I the billionth (must be a real word as auto correct just corrected it for me) parent to thank you for writing this? Yep, I’m one of ones who had (yes, that’s past tense) a child with disabilities. Of all the things you said (and they were all true and all so helpful that I’d like to print it, copy it, highlight lots of stuff and hand it out to everyone) the one I loved the most, is about being there for that parent even if its a one sided relationship. The people who stayed with me despite the lack of response or even acknowledgement of their call, card, email or other genuine gesture are the ones who I have kept all these years since his birth, his life and his death. I’ve called those years of his living, subsistence living, because that was all there was to do. With his death came a new series of comments “you can have one of ours” umm, thanks, no. I’ve seen your kids and I believe I’m better off childless. “You must be relieved” Really?!?!?!!!!! My arms are empty and aching. “What doesn’t kill you, makes you stronger” I don’t remember asking to be this strong.
    Thank you for writing it down. Thank you.

    • I wrote it in a piece years ago, and I’ve repeated it a thousand times since then: What doesn’t kill you might make you stronger, and it might shatter you into a thousand pieces and grind you into a fine powder before it throws you into the cosmic lake of fire.

      I’m so very sorry for the loss of your son.

    • Serena

      I stand beside you. When I informed my son about the death, he said, “so now she’s in heaven with grandpa”. That brought me some comfort, but it will never make up for the loss.

  • […] Women and Gender Studies at the College of Charleston. Piepmeier took the opportunity to echo the advice given recently on what NOT to say to moms of children with special […]

    • Dianne

      I read this and it reminded me of a comment I had forgotten about, but I hated it. I was once told my a professional that the human being has 46 chromosomes. Then, jokingly he said technically my son isn’t human because he has 47. If I ever see this person again, I will gladly explain to him that my son is more human and humane than many ‘humans’ I know.

  • Beverly

    to Mary – please accept my condolences on the loss of your child. Please believe me when I tell you it will not get better, but it will get more bearable.

  • dear jenny, who commented on the 20th of Aug.,my sons are both in their late teens,early 20’s,my father has been in the mental health field over 20 years,I have a degree in child development,specializing in special needs children,& no one,dr.s,state officials,teachers,ectra.. would recognize their mental health dis. inherited from their sperm donors,not till my oldest had been in the juvi system for about two years,and the courts and injuries to me caused by my oldest son, forced me to put him in the foster system,and the foster parents started saying the same things I had been telling folks,did my sons get the mental help they needed,i also took care of special needs children,i am not whining,i am expressing a need for better assistance for parents that need it& or the children that need it.

  • also,I am a disabled mother.I was hit by a car 24 days before my 16 th b-day,I was in patient ,and out patient for 2 almost 3 years. I had my oldest son while still doing therapy for the accident, so I can see both sides of the coin, so jenny I am/was not ever seeking pity,i was just trying to find help for my boys, and figure out how I was going to take care of things they needed,and I needed.

  • […] then, there were the negative comments on my recent post Dear People Who Do Not Have a Child With Disabilities, almost all of which asked (demanded) some version of how dare […]

  • Ratshothe cate

    I wnt to help people hu do not have a child

  • Cecilia

    Right! We did not know what these parents went through and I sure I said stupid things too. But if nothing else At the very least, Know Really Know that you don’t know, and that you can’t know just like we didn’t! My fave was”Oh,that’s just typical adolescent behavior!!” Really I have 2 typical boys that went through adolescence and a typical girl and these behaviors are not typical!. LOL but with everything I have learned not to judge and just because the family in public looks one way, you still dont lnow!

  • Stephanie

    Best line ever: 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.

    thanks, again, for putting into words our experiences and feelings.
    Best always,
    Stephanie

  • Thank you for sharing this well put together site.
    Chandra recently posted..Chandra

  • Cindy

    Thank you for the blog. I enjoyed reading all the comments. I would like to add a comment. I use to get really angry when people said “stupid things” after Abbey was born with CP. I was stubborn enough to thumb my nose and/or just ignore them. Abbey is 13 now and she has taught me the error of my ways as it relates to these people. Abbey is an accomplished public speaker. In a recent speech she hit the nail on the head. She said, “Everyone has special needs, some people’s are on the outside like mine, and other people’s are hidden on the inside, not so easily recognizable. However, we all have two very special needs in common, the need to be loved and the need to be accepted.” Her comments totally changed the way I perceive others. Instead of judging their motives, intellect, or intention, now I try to identify their special needs and try to help them achieve their potential, by being inclusive and accepting. It’s not about any one person, It’s about changing the human condition, one heart at a time. Love and happy thoughts to you and yours !!

  • Marcia

    A friend who has a special-needs child posted this article on facebook. I just wanted to say thank-you.

  • Richard M Roberts

    Over the years I have learned quite a bit from parents of children with disabilities–long before i knew I too was destined to become “one of them”. Two particularly sad phenomena which have been noted by clinical geneticists and, no doubt, others, should be mentioned. You have a child with quirky behaviors, or one who has so few normal behaviors for age, that your “friends” and “acquaintances” finally realize that they do not want to be reminded of imperfections which can exist in a parents’ world–so they stop visiting. Now, that is distressing, and it is lonely. Probably a lot more of this happened before you youngsters had the benefits of the disabilities act. But I bet it still is quite real, and hurtful.

    I remember hearing people grouse about spending money to rebuild curbs! I grew up pre-Americans with Disabilities Act–a person in a wheelchair had to crunch over each and every curb, whereas the ramp is one of the oldest machines known to man. There was no access to public transportation because why the hell should we spend money on converting a bus to accept wheelchairs, when there are so many other things we need to spend money on? And yet, the country adjusted without going bankrupt, to the benefit of our civilization. A pat on the back for us. But you’ll still get community organizations complaining about the “unsightliness” of a ramp smack dab in the middle of their precious suburb to allow someone to have access to their own home!

    Then there is a more distressing syndrome, which I have not completely figured out, but is quite real. I personally believe that it must come from un-confronted guilt feelings. A couple, whose first child has a severe handicap, which requires massive care, will decide to devote their lives to their child–even if the child does not have the capacity to appreciate their devotion. The couples usually have a sterilization procedure, as no way could they have the time to take care of another child. So they lose the opportunity to have that “normal” child, to understand how a “normal” child can affect their lives…I have wondered what these couples go through when in spite of all their care, they lose their special needs child, and are faced with a life without that child, and without the ability to have another.

  • Serena

    Richard. I DID opt for sterilization. I “tried” for the typical child, lost one, and have another child with a disability. The first neurologist misdiagnosed my first child, and said “your son will snap out of it,” I believed the neurologist—- HUGE MISTAKE! Persons in the Pittsburgh area, AVOID Dr. Varma on the Boulevard of the Allies LIKE PLAGUE. I am not the first one; I have spoken to other parents that have been given an incorrect diagnosis. Because of the incorrect diagnosis, some of the children were subjected to medical treatments that would not work, and, in some cases, caused harm. (one child died, and there may be more). But back to the subject of sterilization: I have two handicapped children, and I don’t want another one. Sure, I’d like a “typical” child, but through my own research, I’ve discovered this is a dominant gene, and it worsens with each generation. Furthermore, if I had known then What I know now, I would not have had children. Don’t get me wrong, I love my children, but sometimes it’s overwhelming.

    My second child: A doctor told me she would never walk— that’s right, she runs, skips, hops, is a Blackbelt in Tae Kwon Do, a State finalist for North American Miss, and a Soapbox Derby champion. (and I was offered to terminate the pregnancy 7 Times! Because she’d never be “normal”) I never put limits on my children. As I’ve told them, “As long as you try your best…” True, my children will never be gymnasts, but there’s so many other things to try…

    As for further pursuits: I cannot say enough about Horseback Riding… horses are proof that God loves us and wants us to be happy. It has been a Godsend. After all those PT sessions with my son, horseback Riding achieved in 6 months of riding once a week what the therapists couldn’t do in 2+ years. (true, the therapists might have helped some. but the riding brought it around.)

  • Richard Roberts

    Serena, I encounter gross misdiagnoses and mind-numbing pseudo-geneticoid “counseling” frequently. Get second opinions. (about 6 months ago, a couple with an infant affected with Down syndrome informed me that their perinatologist called them up after he received the amniocentesis results and told them yes, their fetus had Down syndrome. Then he hung up the phone. How could this be more appalling? There is one pediatric neurology group in town whom I wouldn’t refer a dog to. One of them told a mom with an autistic son that he “doesn’t believe in autism”, and laughed at her. This happens ALL THE TIME. Particularly with regard to genetics. In your case, if you know that you have a dominant mutation, all I am saying is for people to be certain that they obtain correct information about prenatal diagnosis, and use it based on their own personal beliefs. You should not have had to do the work yourself. One person may find implantation of a fertilized egg without that mutation acceptable, and then could enjoy the pregnancy knowing that the child would not be affected with that particular disorder. Another person might find that to be unethical for themselves. Another may want to wait to see if a therapy for the genetic disorder occurs 10 years down the line. I don’t know what to do about all the MDs who make idiotic pronouncements like “your child will be dead in 3 months” when they are too stupid to know that they could be incorrect.

    But I have a joke I tell my patients which is always well recieved. A fellow died, and was waiting in a very long line to St. Peter’s gate. It moved very slowly forward. Then a guy in a white coat and a stethoscope breezed by to the front of the line, where St. Peter let him right in. Well, this gentleman was stunned! When he finally arrived at the gate, he stammered to St. Peter, how could they show preference… and St. Peter put up his hand, and said, “Oh, that was God. Sometimes he likes to play Doctor.”

    • Serena

      I found out what it was by seeing a geneticist, Dr Elizabeth Mc Pherson. When I was expecting for the third time, I asked the OB whether this baby would be “developmentally delayed” like my firstborn’s diagnosis. He sent me to Dr Mcpherson. I walked in her office, and she straight away said two different diagnosises to her assistant. Then she talked to me, did the exams on me and my son. She took blood samples. Bear in mind, I was pregnant with #3. 3 months later, I got the phone call. “Hi, it’s (name deleted to protect the guilty) from Dr. McPherson’s office. Your son has________, an by the way you do, too. When do you want to terminate your pregnancy?” THis was her asst., not Dr. McPherson. I was so stunned that she would ask within the 45 seconds we were on the phone. I would NEVER do that. I had amnio about two weeks later, and yes, this child had it, too. But, she’s a fighter: I got into a car accident at 33 weeks, and twelve hours later had an emergency C-section. She had no “gag reflex”, and we couldn’t bring her home until we learned how to use all the equipment.
      Many people don’t like Dr. McPherson because she doesn’t sugarcoat it. That’s fine by me, as I’m not good about reading between the lines. I like a doctor that gives it to me straight, no matter how harsh it may be.

  • Richard M Roberts

    No way would I ever tell a patient what the result of a test was without being there to give them full background. That is just plain tacky. You were treated like a mangy
    dog. Makes me furious! I know Elspeth. She gave up trying to tell people how to spell her first name. We were both genetic fellows at the U. of Wisconsin in 1979–she left a year earlier than I. Our supervisor despised her because she kept wearing see-through blouses to genetics clinic–with no bra.

    • Serena

      That was her assistant. I saw Dr. McPherson three days later. (It happened on a Friday afternoon; I was in her office Monday morning with a tape recorder.) I LIKED Dr. McPherson.

  • Caregivers come in all varieties. Some take care of children, normal and otherwise. Some take care of their senior loved ones. Still other take care of people who are ill or terminally ill of whatever age. Some caregivers are paid, like teachers, nurses and those others in a nursing home. Some are not.

    All caregivers hear those kind of platitudes from others or worse. One of my favorites when I was worried about my daughter was “You prayed for this child.” Whatever that meant, but it was mean spirited.

    It was great that you explained what we hear behind the platitude. Knowing what makes me mad and why helps me be calmer about what was said. I can deal with my own feelings, the only control I really have even if the person is someone I can confront.

    I took in a lady a little older than I am and I have been taking care of her as my older sister. I am her caregiver. People who know the truth about us (and it’s not at all sexual), have called me an angel. It always made me feel bad because I know that I am definitely not.

    You wrote, “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!”

    That’s it exactly. That’s what I heard, but couldn’t put my finger on.

    You also said, “…we are very un-angel-like. We are deeply angry sometimes. Wounded. Broken.” That’s how I feel, but I am not allowed to say it.

    Thank you for this article. It will tide me over on those rainy days of the soul.
    Ann Mullen recently posted..The Senior Caregiver and the Sensitive Doctor: Tips to Make Them All So

  • Hello Adrienne,
    Thank you for telling what you have experienced as a parent of a child with disabilities. You are the reason I do what I do, to assist parents by providing home training programs that improve listening and learning for many children, though not all, who have been helped minimally with traditional therapies and programs. I learned from you that I have much more to do to make my programs more accessible and to communicate effectively about them online. You are a good writer and have much to say.

  • Rachel

    You can’t expect people to know what you’re going thru. You don’t know what they’re going thru either. We all have our crosses to bear. People who said those things to you didn’t know they were hurting you. People aren’t perfect! You want them to say or act some perfect way. Well, it’s never gonna happen! Stop living with a chip on your shoulder just waiting for someone to knock it off. Why don’t you put more energy into writing an article about nice things you could say to other people instead of nice things people could say to you.

  • Richard Roberts

    Rachel, I cannot help but relate your comment to that of an exposition of Jane Curtain, responded to by Dan Akroyd, on Sataurday Night Live. “Jane, you ignorant slut!” Have a pleasent tomorrow. http://youtu.be/4BAJjxkpuIg

  • Serena

    Rachel, you don’t belong here. Your post was NOT appreciated. This blog is like a support group, and would you stand up at a support group and say that. And if you did….. well, I highly suspect you would be one of the special needs group.

  • AnonL

    Rachel,

    While I find Richard’s comment rather over the top, I fully agree with the responses to your comment.

    You are apparently ignorant, self-important, lack any type of empathy, mean-spirited, have big-time anger issues (get a therapist for that, girl friend), or all of the above.

    Thanks for making the world worse – maybe you should move to Syria; do you know where that is? It is very obvious you are not an educated or enlightened person.

    Best of luck in your pitiful life.

    • Serena

      I wouldn’t come out and say it, but I value Richard’s viewpoint, as he says, rather bluntly, what I would like to say. Diplomacy is not my strong suit. As Adrieene said, we should support the people in our lives as we see fit. Thank goodness Rachel isn’t in mine. Part of my trouble is that I’m just so frustrated. I try so hard to make the best of things, but I am being struck down daily,if not hourly. After all these years and I am so sad that I didn’t go to Italy. While Holland is better than Sudan. I can’t help but feel cheated. I did everything right, while, my friends that smoked, drank, or otherwise abused their bodies while pregnant had “typical” children. Rachel needs to move on, and away with the others that made unhelpful remarks. They are the ones that should be ostracized; there’s no cure for being mean-spirited,and lacking empathy for no apparent reason.

  • Anonymous

    Do you have a facebook page?! I can’t figure out how I ran into this blog but I have been desperately searching for anyone that may share the same types of struggles that I do. My son is 3 and was just diagnosed with Dyspraxia in May. Naturally most people just assume that it just means he has some type of Autism which he does not. I cannot find a support group anywhere nearby and I am desperate to learn anything I can about his disorder and to meet people who also have a child with Dyspraxia and can understand what I am going through. My family is very supportive but they just don’t understand the complexity of his disorder. My husband supports me and our son 100% but he also seems very confused on the diagnosis as am I. By the time I finished researching the disorder the day he was diagnosed, I had no doubt in my mind that the Neuropsychologist was correct. I am still very very new to this and really support that I know I cannot get from people that don’t understand. Thank you so much for posting this and please let me know if there is anyway I can get into a support group with other parent’s like me. I am on facebook Whitney Ashford Meyers!

  • So true. While I don’t hear things exactly the same way as you, all of these comments deflate me. I was actually starting to compose a blog like this in my head today.
    Leah @ The Informal Matriarch recently posted..FYI (if you’re a teenage girl) – A Response

  • […] 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.  […]

  • Katie

    To further relate, these are things people say to adults with disabilities and chronic illness, and it never fails to leave my chin on my chest. What gets me is that I am a non-believer and people know that about me, and yet they insist on talking about God’s plan and all the platitudes you hear. (Not that the behavior is any better or worse; it just blows me away that people don’t even think before they speak.)

    They look for the ways things are my fault, even though my disease has a genetic switch. It’s a 50/50 either on or off. The only way epigenetics impacts it is in the severity. But no. People on the outside have to analyze how I’m handling it.

    I am fortunate. Most of the people around me don’t say these things. They tend to just listen, offer help when I ask for it, and keep their counsel when I don’t. Only my partner-in-life is allowed to intercede and just help without asking, and that’s because he knows all of the ins and outs and minute details. (Ok, well, him and my various health providers and exercise instructors. But then, I deliberately asked my exercise instructors to intervene and ask me whether I’m overdoing things any time they see a possible problem, so again, I asked for the help. I just indicated that it could be ongoing.) Of course, this means that the people who DO make these comments to me are more acquaintances than close friends, which makes it much worse. You’re barely one step from being a stranger . . . what business is this of yours?

    You’re right. People want to be nice, but they don’t know how to do it. They can’t relate to your situation or mine. And you’re also right that at any point it could happen to them, no matter how much they try to do everything right. Their child could be born with a disability, they could be in an accident themselves that leaves them with a disability, they or their loved ones could develop lupus or MS or what-have-you out of nowhere. And I think the more people who realize none of us is invincible, the more people will be able to relate to our respective situations.

    I am sorry you go through this. I am sorry that on top of having a child with disabilities you have to deal with nice people who just don’t get it and inevitably say the wrong thing. I’m glad there are other people out there who do get it, and thank you for writing this post.

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