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…

  • Jennifer

    I agree Steve.

  • valere

    i am a behavioral therapist. it kills me when i know people don’t believe parents. so many feel the need to insist the same behaviors, etc to me. no need, i believe them. its hard almost every day.

  • Alice

    I’m an adoptive parent, and my child has some problems that aren’t readily visible to the general public. We struggle with them privately at home. People don’t get why I’m constantly stressed out and frustrated because, “She’s so sweet!” But at home, she’s oppositional. They don’t realize the fight I went through to show up where the see us, almost on time, with her showered, dressed, hair and teeth brushed. She’s smiling, and I’m not, so clearly the problem is me, right? Sigh.

    So, I totally get what you’re saying. When I try to explain the reasons for my frustrations, it’s clear that they all think I’M the problem. I’m being overly dramatic, too strict, or generally just doing it all wrong. She’s such a dear, after all. Never mind that she lies pathologically. Don’t get me wrong, I love her. But she’s not the person that the public sees.

    But on the other hand, we do have to keep our perspective and be thankful where we can. Things can always be worse. If your child’s condition isn’t degenerative, for pete’s sake, be thankful for it. Sure, it’s awkward for someone to point that out, but if they don’t know what else to say, then they don’t know what else to say. It helps to remember that they’re not saying it to piss you off.

    Things can always be worse. They can still get worse. I don’t take enough time to be thankful, but I should. We all should. My kid lies and sneaks and is defiant and oppositional. But she’s pretty smart and will live on her own some day, if she stays out of trouble with the law. I guess I should be thankful for that in the big scheme of things.

    • ADDmomofAspergersADHDgirl

      Hang in there Alice, even though it sounds like what you’re dealing with is really difficult. I can totally relate – this could have been written by me 6 months ago. Don’t give up hope – keep changing counselors until you find one who knows how to help your daughter and you. We had been seeking answers since my daughter was about 2 yrs, and it wasn’t until she was 13 1/2 yrs old that we found a tag team of counselors to treat her – 1 Aspergers specialist and 1 ADHD specialist. She’s now 14 and the outbreaks are the exception rather than the rule. There are still days where it is harder than usual (and tonight if you’d been at our house you’d have seen how frustrated/impatient *I* can get!) But things can get better if you find the counselor(s) that are needed. 🙂

  • Thank you for sharing all of this. It definitely gave me a better insight into how the way I interact w/families who have children w/disabilities is perceived. I would add (a slight aside) my mother in law became blind as an adult. The reason is not pertinent EXCEPT for some reason people feel free to ask all the time, “How did you become blind?” They use the same inflection every time. And for a variety of reasons it’s really not an explanation that is appropriate to give a complete stranger. To me it’s like asking “tell me about the moment you got pregnant” or something else very private. The result is the same and the process is best left to you and those you are intimate enough with to choose to volunteer the info. 🙂
    Paula Kiger recently posted..Full Support (A Mama Kat Writing Prompt)

  • My 5 year old has developmental delays and an unofficial diagnosis but I honestly think that people who don’t have empathy just aren’t sure what to say. I’ve heard the “He seems ok to me.” phrase more than I can count. These are people who haven’t spent any time with my son but in a way it’s their way of trying to show sympathy without knowing really what to say. Once I came to grips with that, I’m not really bothered by people’s comments anymore. I do love talking with other mom who is struggling with a child because they really get it. I love your tips and hope that those who are making comments or trying to help will read your article!
    Tiff recently posted..38 Weeks

  • I know far far far too many people who have kids with delays, diagnoses, issues, challenges, the gamut.
    Because of this, I have learned from them. I guess my situation with my oldest being wired the way he is, I have empathy for people who have challenged kids. Others think my kids are great, while I get to be treated to their worst behavior ever. In the oldest child’s case, it was almost always directed full force at me.

    One day, one of those people who told me I was wrong about my child got a tiny speck of a glimpse of his shenanigans. Her reaction to him was the closest to a personally directed apology I will ever get from that person. And when that person finally has kids of their own, I will await hearing of the things being lamented. And I’ll just be quiet, because I know I’ll be too tempted to remind them of their words to me over the years about my child.
    FeistyIrishWench recently posted..Originality and Humor

  • This is a fantastic post, thank you for writing it!

    It’s amazing how often adults with disabilities of any kind are told these same things about themselves. Particularly unhelpful are the comments whose underlying message is “I don’t believe you. You are lazy and/or stupid and/or immoral in some way for having this struggle. It is your own fault that you have these challenges. I am better than you. You are making a big deal out of nothing. I have nothing in common with you. Your problems are too uncomfortable for me to think about.”
    Kals recently posted..Mental Illness In the Media

  • OH I LOVE THIS!! I agree on so many levels. It’s the hardest when I have people tell me there is nothing wrong with him, he doesn’t “look” autistic, and “My child did the same thing” No, no your child didn’t. Yes he is autistic, and he also happens to be one cute happy loving boy. I will be sharing this because I think so many people need to see it!

  • AnneMichelle73

    Such a wonderful blog. Totally relatable. Here I was thinking my in-laws were the only ones who seemed to think our child’s behavioral issues were due to our crappy parenting skills (this being their response when we reached out for some help).

  • Leslie Truver

    I shared this post on FB, with this addition of my own:
    “To this list I really REALLY need to add, “You did the best you could.” Because when you say that, I hear, “I don’t blame you for the obvious colossal failure that is your kid(s).”

    I didn’t just do the best I could, and I don’t need to be graded on a curve. I did, I am doing, phenomenally, and my kids–who also do more than what you think is the best that they can– are fucking fantastic. You think we did the best I could with what you think you know was hard. You have no idea how hard it actually is, and you should be enormously impressed, not cutting me and my kids any condescending slack.”

  • Penny

    I loved the things you said in your blog. It hit home to me on so many levels. My Mom is strugling with cancer and I could so relate to many of the things you said. she is struggling to navigate a very scary world as well right now. Thanks for your blog.

  • I dont agree with a lot of the “what we heard” parts. I am a parent of a special needs child and never once did I try to assume what the person was meaning or implying on what they were saying. I took everything with love and understanding and a lot of times I agreed with what they said. They were trying to be as understanding as they could and by no means did they try to imply the things you post here that you assume they implied.

  • Tammy

    Thank you for righting this. My youngest son has autism, I feel, and share your pain. I would add the question ” How old is he” Sometimes I just answer with his age, and wait to see if anyone has the courage to actually ask “What makes him different”

  • Dana

    I will never forget being told by an acquaintance that she would have had my daughter potty trained in three days. That I should just treat her like a DOG. And, she was sure if I just took the time, and made the effort, to potty train, my daughter would appreciate it.

    I went into a hall closet and cried. My daughter was about to turn 4 yrs 9 mos and had been trying for two and a half years to know when she needed to use the bathroom because of her low sensitivity combined with a muscle planning disorder. Humph. Three days…

    • Dianne

      I’m the mom of a child with Down syndrome and I also worked many years as a special ed aide. We had an autistic student who was like a tornado. Hitting, kicking, biting, screaming and destroying things. A school behavior specialist came into our classroom–with parental support–and said she would calm him down in less than 2 weeks. She was given a room, no one but her, her assistant and the boy were allowed in there. He wasn’t allowed to leave the room during school hours. She physically forced him to clean up his messes, she restrained him when he bit, she oversaw every movement he made. When he came back to our class, he was a lot calmer. She took him back to the room one day to check his progress. When she bent over to get something, he bit her on the butt. Well done young man! No child should be dealt with like that. Some people just don’t stop to look at the underlying reasons children have along with their disabilities. Your daughter will go potty when she is capable, never let anyone force her.

  • SeattleRose

    Thank you for this article, ten times over. I don’t have a child with a disability, per se. But I DO have a child with a sleep disorder, who was also often screaming in pain due to an undiagnosed autoimmune disease that took more than two YEARS to figure out.

    I encountered so very much of what you were describing here. Even our doctors, who should’ve been investigating a *medical* cause of my son’s problems, blamed my parenting. Sad, because six months after his diagnosis, his treatment is under control and he is a lovely, happy little boy. We also have been treating the sleep disorder and have a plan that gives everyone a much better night’s sleep.

    Sadly, the BS came from even close friends who felt we were spoiling him (read: helping him to at least get some sleep) or clearly not AP enough. Then there were the folks who thought I was making it up when I said, early on, that he was sometimes sleeping less than 10 hours PER DAY, TOTAL, in the early months of life. Or that he was awake for 10 hours IN A ROW when he was 7 days old.

    Mostly what I got when I complained that he would scream, inconsolably for 1.5 hours in the middle of the night, every night, was accusations that *something* I was doing, even if it was unconscious, was creating this behavior.

    I think unless your child has serious challenges, you’ll never know what it’s really like to live through this. But thank you for bringing some awareness to the situation.

  • Alissa

    Thanks for posting this, you did a wonderful job of capturing my thoughts/feelings many times over! The loneliness is so hard, I have such a difficult time opening up to others about what being Megan’s Mom is like. The questions never get answered or go away. I’m appreciative fir other moms who have the courage to “put it out there” so the isolation is a little less painful 🙂

  • Ollie

    I’m relieved after reading Alice and Davids’ comments because I also feel that if you can identify that a person is well-meaning, there is no need to make other assumptions about they are saying. Trying to be understanding is a two way street.

  • Laura

    Thank you for writing this. I have a much bigger voice online than in my friendship/family circles because of the ability to share and speak out these things you’ve said above. My daughter is 11, and still, people don’t believe me when I say the 11 doctors we see, the severe delays she has, the sports she cannot do because of excessive injuries she can quickly get, the social differences, the list that no one knows about but my husband and my mom and 16 year old son. Thank you for sharing. My little circle just grew a litter bigger 🙂

  • #1 They have faith that God is going to help you through. #2 I cant explain without this being longer than it already is.#3 I DO believe that I am a “special” parent for God to give me a special child. There are a lot of people out there who would not be able to handle a special needs child and I dont believe what I heard was that I am fundamentally different and that the person saying it is not going to try and understand me. #4 I agree and I wouldnt ask anything of anyone because its just that. There really isnt anything they can do and I dont expect it. #5 Every child IS a blessing and that statement is not trying to invalidate someones pain. I dont even understand how she could think it was. #6 Is a truth. Doesnt imply that your faith is weak. #7 they are just trying to help figure out how something like that could have happened. They are not trying to say” this would never happen to me”. ALl in all I KNOW that no matter what people could have or would have or did say was loving and taken as it was given. She says that she would rather people just keep quiet. People are trying to express their sympathies to your pain and hardship, the thing that she is wanting, but they arent doing it the way SHE wants them to. I welcomed everything and anything I got from people. Maybe she just wanted to be left alone. *coming down off of soap box.

  • I have just read this blog for the third time. Every word feels like it has come straight from my own heart. I have sent links to this blog to every person I know. I hope that they forward it to every person they know. It should be mandatory reading for anyone who will come into contact with a parent of a child with disabilities. Thank you for being so honest, even when the honesty hurts.
    Shani recently posted..Dear People Who Do Not Have a Child With Disabilities…

  • Kristi

    This is profound and put into words what I could not formulate. This is so true…everything you wrote is spot on. I remember my sister in law asking me, “did you do drugs when you were pregnant with _______?” I’m sorry? Are you crazy? The biggest confession I could possibly come up with is that I had maybe, maybe 2 cups of real coffee with caffeine twice during my pregnancy. I could not believe she asked me that, I still cannot, especially since her children had so many problems when they were younger. Thanks for sharing this.

  • Anonymous

    All I got from this is that it is better to ignore or show no support to you or any mom with a child that has disabilities so that I don’t offend you or them. Isn’t it worth looking past the words that were said and appreciate the effort of support and even care towards you and your family.

    • Daba

      I don’t think anyone who is responding here thinks that people who say these things are intending to be cruel. The comments are thoughtless, however, and can be hurtful.

      The important context here is that many families with special needs kids are struggling a lot, feel exhausted (emotionally and physically), already feel overwhelmed, isolated and alone, and judged by the world as insufficient or incompetent. That is how we START, before any other interaction. And because we are already feeling this way, the well intentioned but clueless comment can really really hurt; we often don’t have the same emotional reserves that other folks have to get a thicker skin or see the meaning beyond the words.

      Knowing this fact, I hope other people can learn to choose their words more carefully so their impact matches their intentions. Sort of how the best words to say when someone dies are “I am so sorry for your loss”, which are intended to avoid putting your foot in your mouth at a time of high emotional vulnerability.

      Not all special needs parents need this sort of understanding or sensitivity, but many do, or they need it at certain times in their journeys. Isn’t it better to err on the side of caution?

      • Daba, I think that’s what a few people have misunderstood. When we’re in that place – that terrible, terrifying, vulnerable place – we CAN’T take anything with a grain of salt. We CAN’T give people the benefit of the doubt. Which is not necessarily who we are. It’s certainly not who I am during the ordinary course of my life, but for a few years, it was like I’d been skinned and I was walking around the world with all my nerves exposed.

        I like what you said: Isn’t it better to err on the side of caution? Yes, it is.

        • Daba

          YES, exactly.

          I consider myself to be a strong person, but when it comes to my kids, wow, I am so vulnerable.

          So much of this is also an indictment of our larger society that one population is so vulnerable…

    • Anonymous: Please feel free to disregard everything you have read here and support the people in your life in any way you see fit.

  • Missy

    I am so sorry for everything you have gone through and continue to go through and I am grateful you have written this piece. It has given me a glimpse of your world.

  • Beverly

    A wonderful, wonderful post. Thank you.

    I gave birth to two boys with leg deformities – a type of clubfoot. There were times when I wanted to hang a sign around my neck that read:
    No, I did not use drugs or alcohol before or during my pregnancy.
    Yes, I got prenatal care as soon as I knew I was pregnant.
    Yes, I went to all my obstetrician visits as scheduled.
    Yes, I took my prenatal vitamins and folic acid daily.
    No, I did not expect to have another child with this problem; as a matter of fact the doctors assured me I would not.
    No, I did not have a difficult pregnancy (I was healthy as a horse with no morning sickness)or delivery (one was 5 1/2 hour labor the other 8 1/2 hours.
    Now – can you look at how alert, happy and interested in his world my child is?

  • Ang

    Gut punch of eye opening truth for me. I commit to loving only with listening ears, hugging arms and practically helping hands. Thank you for your honesty. Those of us “well-meaning” but very unsure crowd appreciate your words.

    • Thank you, Ang. Many, many thanks. I try, too, to love with an open heart, but I know that there have been plenty of times that I meant well but said something that stung someone. I have been grateful when people clarified, for instance, phrases that were culturally insensitive. I know that you are a gift to the people who know you, because that listening attitude is the starting place for all the good stuff of life!

  • Judy

    This is the first time I have seen in writing that which I have never been able to put into words. It seems as if when my son was younger I heard once a day, “God only gives us what we can handle.” I became so tired of hearing it that I started to ask the person, “well do you have God’s number, because I want to tell him enough!” I have learned to see the people who ask me how I or my son are doing when they really don’t want to hear. After the first few sentences their faces “dull” and I lose their attention, so I smile now and say, “fine.” I have also learned that when some people say they want to help, that they want to help their way, not really in the way you need them to help. So mostly, I do it on my own. I make sure that I don’t ask any one person for too much. I don’t begrudge them, and I’m not angry – anymore. People can only handle so much. I am thankful for those friends I have that include my son in their activities and treat him just as they would any other child. I am ecstatic for any achievement my son makes (he rinsed off the dishes and loaded the dishwasher by himself yesterday and I almost cried!) I pray for patience, and lately, that I will be around to take care of him for many years. He is a gift – and I am thankful for him every day.

  • I absolutely love the “my plane landed in Sudan!” line! Mine too! I think that essay needs an abridged version, yours is so much more realistic!

  • Thank you! Thank you! Thank you! You have written what is the minds of so many of us Mothers of children with disabilities. The blame yourself, then finally realize its NOT your fault only to have others blame you cycle is so discouraging. Its a long, often exhausting road to walk and it helps to know we are not alone! Sometimes I complain but more often than not I’ve zipped it because of the well-meaning people who try to “fix my problem.” You are so right, you can’t fix it. I just need to vent once in a while. I need to know someone understands, that someone hears me. And, I also need to know that even with all of it, I’m proud to have the child I have and I want you to see the upsides of her that I see in her every day!!
    Erica at ButeauFull Chaos recently posted..Hawaiian Loco Moco #Recipe #Food

  • What a wonderful, well-written post! Thank you for writing this. I love the Italy/Holland/Sudan reference.
    Anna recently posted..Speech and ABA Therapy Techniques

  • This is an incredibly important and heartfelt piece. It gives parents of atypical children a voice and validation for their feelings. May I share the link to it on my blog?
    http://PositivelyAtypical.Wordpress.com

  • Yvonne

    You have no idea how much your comments have helped me!! I’m so glad I’m not the only one who is bothered by such seemingly good natured comments. One of my friends, who I really care about always says that all kids do what my daughter with FAS does. For such a long time I questioned why hearing this bothers me so much. I thought, what is my problem, shes just being nice. You hit the nail on the head, I only socialize with my daughter when she’s on her best behavior, and yes she gets distracted by the novelty of new environments. So our friends see her at her best, when she very well may appear to be close to a normal little girl. But that is far from the reality our family faces every day. I love my daughter, but its been very difficult to raise her. I really need to read posts like this more often, because I don’t know of anyone who truly understands what we go through. Thank You!!! You are a great mom.

  • Terry

    Excellent article. I had a doctor tell me it was all in my head and I was creating drama…and that was before she evaluated him. She came away singing a different tune.
    But more hurtful were the comments from friends and family that we were making things up. One person recommended an exorcism after getting a very mild taste of what we dealt with everyday.

    Hugs to you….you are a wonderful mama….you are not alone….

  • I have another note. What I would like to say when I am told by well-meaning people that God only gives us what we could handle: Does this pertain to my 9 year old son who has a mood disorder and tourettes? Did God give him these disabilities with the knowledge that my little boy would be able to “handle it?” Because I have a beautiful, sweet, and emotionally disturbed little boy who asks me, “Why did God make me this way? Why can’t I be normal like other people?”
    I may or may not be able to handle being my child’s mother, but somehow I struggle through it because I have no choice. I do believe in God but when I read about similarly mentally-disturbed teenagers committing suicide because they CAN’T handle it, I wonder if the person who came up with that line knew anyone with disabilities.
    Shani recently posted..Dear People Who Do Not Have a Child With Disabilities…

  • Anonymous

    Sounds like you’d rather not talk to people who don’t have a child with disabilities. Shame on them for trying to be supportive or positive? Maybe they should just tell you, “Wow, it must suck to have a kid like that.” Maybe you could print out a list of things that are acceptable for them to say to you so you won’t be upset by them trying to say a nice thing and messing it up.

  • Sheridan McInnis

    Thank you for this wonderful article. I am looking for support through my FB page for any parents who are dealing with a child who suffers from Reactive Attachment Disorder. My son was adopted from Russia, and is highly aggressive with me. My FB page is https://www.facebook.com/ReactiveAttachmentDisorder?ref=hl

    Thanks for considering.

  • Elizabeth

    Thank you!

    Each of these things have been said to me also.

  • Debbie

    This made me cry, nod my head…for 32 years I have lived and felt all these things. I would love to have had a fellow mom I could relate to, who could relate to me. Thank you for putting this out there.

  • tim

    Thank you thank you thank you! I have struggled to express this to so many of my friends and family. I will now just send them a link to this post. Wishing you and your family all of the best.

  • Kara

    This entire post could be summed up: don’t say anything to us at all because ANYTHING you say will be interpreted in the WORST possible manner.

  • Amy

    Thank you for sharing your insight. This was moving and educational.

  • Richard Roberts

    I’ll tell you something which bugs me. There are a hell of a lot of parents which disabled children whom I have known through the years who are not religious, may be agnostic or atheist–and you know what? They are just like you. As a group. some cope well, some do not.

    • Indeed. And most of us cope well sometimes, and less well other times. I was a disaster for some years, and I’m very well now. There’s no guarantees, no formulas, and no predicting who will respond to a given situation in what way. Faith is a comfort for some of us, and some of us find our comforts elsewhere. I’m an advocate for helping people find what works for them.

    • I’m not sure why of all the rude comments I’ve read on this post, this one has compelled me to respond, but my goodness. What a cruel thing to say to a woman who has put her raw emotions out there to both educate others and purge the overwhelming feelings that can accompany having a child with special needs. I’ll tell you what bugs me. People with exactly zero experience raising a child with disabilities telling those who do how they should feel, or worse, chastising them for the way they do feel, and in this case, taking it so far as to insinuate that because the author does not share the same religious fervor as you, she somehow fulfills this little stereotype you have playing in your head. Shame on you, Richard. Shame on you. (And if I have misread your comment and you are somehow praising the author through your swears and irritation, I apologize. Somehow, I doubt that’s the case here.)
      SammichesPsychMeds recently posted..Teachers: You Are Worth Far More Than They Say

  • Jennifer

    Living with disabilities myself, I would rather have people ask questions. I despise people talking behind my back. Yes people say things but most times they aren’t mean. I’ve heard things though like you that make me want to scream.

  • Richard Roberts

    Wow. I did not mean that to read so cold. I did not mean to imply that anything I read here was evidence of one person coping better than another.

  • Cathy and Ralph

    Thankyou. I don’t know you, but I love you. Thankyou for saying so succinctly everything I feel.

  • Kari

    As a mother of a nonverbal autistic son, I have to disagree with most of your article (for me, some of the platitudes actually helped me feel better), except for two things.

    The first thing that got to me was during the time when we were realizing something was different and not right with our son, at age 2-1/2, and I was voicing my concerns to my mother, she kept basically telling me that I was worrying over nothing and it was all in my head. Of course, once we got the official diagnosis her tune changed somewhat.

    The second thing is that I got/get tired of my mother-in-law always wanting me to try this or that thing she’s heard about to “help” my son with autism, especially when she asks “Well what did the doctor say, is there something you can do to help him? Is there something you can give him [i.e., prescription meds]? Well what about any summer classes you can put him in? It seems like he isn’t very helpful is he” (I get all sorts of questions like this every single time I take him to his pediatric appointments or his yearly neurological development specialist appointment; kind of like an interrogation).

    I know she loves her grandson and wants to help and so forth, but maybe she just doesn’t realize we have neither the time nor the resources for extra therapies/schooling/summer camp stuff and we are never (cross my fingers!) going to put him on prescription meds if we can help it. This line of questioning and her constant “did you try this yet, did you try that yet?” just does not help anything at all.

  • mary

    I can relate to your story I have 2 children. With a disability and when you tell people I usually get are u sure they look normal to us and our reply is plz tell me what is normal

  • amc

    I’m sorry to hear of your pain. I do not have a child with special needs and I am thankful. I have thought those kinds of things myself and felt like I would be attempting to make you feel better and give you and your child a small glimpse of normalcy & non judgment.

    You words did strike a sore spot with me because I have suffered (and that would be the right word) with chronic depression for over two decades. I am bothered by comments like “this too shall pass” because it feels like I will never get out of the abyss sometimes. I muddle through my days and may have to take extra sick time (of which I was abusing by my boss) so it seems like things are normal. Having a “silent” illness can be worse at time because “wow-you look normal” and “try to just snap out of it” doesn’t help matters. In some peoples eyes I may seem to dramatic but I am at my edge and it is taking everyone ounce of energy to turn off the alarm clock once again & get in the shower to face another miserable day. Things are good now but winter is coming and I hope to make it through to spring each year.

    I guess what I’m saying is I should look at special needs from my perspective of depression.

    • Yes! I could have written nearly an identical post from my perspective as a person who has struggled with a lifetime of depression. There was the nurse who tried to talk me out of my suicidal ideas by saying “But you have so much to live for” when I was 19, and the people who said I would go to hell if I did it (severe depression already IS hell, TYVM), and on and on. And it’s really so similar. Thin, weak answers to big pain, where listening and kindness are more appropriate.

      I hope your winter goes better this year. My depression is not seasonal, but my mom has SAD and I see how the dark months press down on her.

  • amc

    That was supposed to say “…accused of abusing, by my boss”. I never took a day off without feeling guilty.
    amc recently posted..Dear People Who Do Not Have a Child With Disabilities…

    • Kristi

      Dear AMC, I have a special needs sons and have suffered from anxiety and major depression as well. Yes, it is a very similar situation and my heart goes out to you. It really does.

  • Maria

    I wanted to thank you for writing about how life is hard and unfair, and about people around us that do not understand how to be in the vicinity of major struggle. Thank you for writing about blame, and about abandonment, and about the whole God/blessings/etc. My story is different: I have no children yet. However, my husband and I have been hit with a number of very hard things very quickly and have experienced some of the human reactions you describe. Thank you for making me feel understood.

  • I can’t thank you enough for writing this. Love, love, love this!
    -Brigid
    Brigid recently posted..Liam and the Terrible, Horrible, No Good, Very Bad Day

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