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 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.

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.

What 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.

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.

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.

What you said: Every child is a blessing.

What we heard: Suck it up, buttercup!

First, 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.

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.

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.

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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447 thoughts on “Dear People Who Do Not Have a Child With Disabilities…”

  1. I know parents want to protect their children from any harm or heartaches and will fight until the death should it become necessary to protect them. Having a child with a disability heightens that response while also adding even more issues to contend with like other people’s off-handed remarks that may seem cruel or insensitive. Perhaps both sides need to give a little in an effort to move towards understanding instead of one side being misinformed about those with disabilities, thereby fumbling their words oftentimes when they encounter us, and the other side overthinking the meaning behind the fumbled words, both sides could learn from the other as long as we give each other a chance.

  2. Such a necessary write up. Being a person who has a mental illness, I hear several versions of those tirades myself. I chose not to have kids (something ELSE I get heavily judged on, of course, as people (mostly women) like to think that we were born to procreate and that I must be a really selfish person for choosing not to be a parent), so little ones are being spared of hearing hurtful remarks… and I try to take it in stride.

    Oh, and thank you Adrienne, for bringing up the god/religion stuff. It is extremely irritating when people assume you are of the same religion as them. I do not believe there is a god. Or gods. But people still want to throw their faith my way.

    And language? I once contacted a blogger to let her know that the wording she had chosen was heavy with judgement and false assumptions. Here are some things she wrote: “I must have looked like a mental patient who escaped the locked ward given the way I was running down the street” AND “… I was twitching like a mental patient”.

    Just like an overweight person does not want to hear: “Stop eating so much and you wouldn’t be so heavy (or fat, or some other senseless and humiliating adjective)” (Science has proven there is much more to weight gain than just that) people with mental illnesses, or invisible illnesses, or VISIBLE illnesses, and specially mothers of kids with such illnesses or disabilities… newsflash! They don’t want to hear it either! Nor does anyone appreciate unsolicited advice (ie. alternative therapies, “miracle” foods, voodoo and even exorcism… yes, it’s been suggested to Michael Schofield, father of Jani Schofield several times).

    Again, thank you Adrienne, for speaking up, knowing you were going to get all the insensitive (and even hateful) comments that you did. Certain things just need to be said.

  3. I am not a mother but an aunt of 3 boys. I see how challenging and busy my sisters life is and i cannot even imagine what it would be like for her to have a disabled child. All parents who deal with this challenge have my sincere sympathy. I have learned a lot from this blog and i hope to be more supportive of anyone i meet experiencing this challenge in the future. I have found this article that some of you may find helpful about ways to have a happy family life with a disabled child. It contains biblical principals, so if this is not your thing then this link is not for you.

    1. Please tell me you are joking?? Did you seriously post this comment after reading this blog post?? LOL

      I will kindly ask you to read all of it again.

  4. I too have a special needs son. I just recently learned he was diagnosed with CP. It’s been such a hard road. But I’m learning to cope.

  5. Thank you for writing this. This says exactly what I’ve wanted to say for a very long time. I’ve heard all of those and then some from people who are well meaning but just don’t understand. You couldn’t have said it any better that’s for certain.

  6. I also have a one year baby with cerebral Paris, but do believe that God is standing in gap; for every baby with disability so parents with such cases accept$ be happy with what God has given you.

  7. I thank Lori for her objectivity on this. I am not a parent of a child with special needs, but I am a very close friend with one who does. It is hard. I am having to learn how to be a better friend. Please see the other perspective.
    1. Friends that shared everything are now deprived of sharing the joys and fears of parenthood . Largely, because the parent of the non- disabled child cannot adequately comprehend the enormous additional day to day responsibility. It is true you have to live it. We just listen with tremendous respect but have an inability to know the appropriate response or knowledge of your exact needs at the time. Secondly, the parent of the special needs child cannot relate to the issues of rearing a child without these needs,and may feel annoyed with the friend by bring up perceived trivial matters.

    2. I think three emotions that both parents feel and are not honest with each other about are guilt, jealously and resentment.
    Guilt because having a child that does not have those issues, means life isn’ t complicated in the same way.
    Jealousy because as much as you love your child you wish it was easier.
    Resentment on both sides because the failure to adequately support and understand the accomplishments and stresses both parents feel.
    3. We need to

  8. I thank Lori for her objectivity on this. I am not a parent of a child with special needs, but I am a very close friend with one who does. It is hard. I am having to learn how to be a better friend. Please see the other perspective.
    1. Friends that shared everything are now deprived of sharing the joys and fears of parenthood . Largely, because the parent of the non- disabled child cannot adequately comprehend the enormous additional day to day responsibility. It is true you have to live it. We just listen with tremendous respect but have an inability to know the appropriate response or knowledge of your exact needs at the time. Secondly, the parent of the special needs child cannot relate to the issues of rearing a child without these needs,and may feel annoyed with the friend by bring up perceived trivial matters.
    2. I think three emotions that both parents feel and are not honest with each other about are guilt, jealously and resentment.
    Guilt because having a child that does not have those issues, means life isn’ t complicated in the same way.
    Jealousy because as much as you love your child you wish it was easier.
    Resentment on both sides because the failure to adequately support and understand the accomplishments and stresses both parents feel.
    3. In order to decrease fear, anxiety, etc. please truly let your good friends in. I want to help, don’t assume I can’t be taught how to properly care for your child. We know your child is great, let us get to know them better. If you insulate yourself and child with others like you, sure it is easier,but how are we solving the problem? The true friend is going to stand up with you against those that are ignorant. If you are like me, and are the friend of a parent with a special needs child- listen and make an effort to show your friend that you can be there in whatever capacity they need- don’t let them feel alone.

  9. I would also add: we are not unreliable, just overwhelmed, but would love to be included in invitations, etc, even if you already know our lives have absolutely no free space. Who knows? This might be the one time everything falls in place. If not, it’s fun thinking we were wanted.

    Thank you so much for this.

  10. This was poignant, lovely, and tore my heart. What a painful, ripped-through-with-love journey you have been on. Thank you for such an honest and completely well-written description of what it’s like and what would be helpful. I don’t have a child with a disability, and flinch when I wonder if I’ve ever said anything like any of the hurtful comments you mention. I probably have. But now I have a better road map forwards. This article has made a difference to me – you have made a difference. Thank you.

  11. I don’t read this as a demand for special treatment, or pity. I don’t read this as hypersensitive, negative, or a criticism of people who are only trying to be kind. Instead, I read it as a terrifically useful guide for people who wish to support a parent they care about. I think it’s wonderfully helpful for that purpose, and I thank you for it, Adrienne!

  12. This is, hands down, THE BEST thing I have ever read, ever. And I read a lot. This should be printed and given to every adult on the planet. And put inside bibles in hotel rooms. Thank you! X

  13. My son Leo is 3 and has CDG1A, a rare genetic metabolic disorder. From the bottom of my heart: THANK YOU! thank you for give shape and form to something that i can now share to help others understand better what we are dealing with. THANK YOU! A big hug for you and a hug for Carter too. B.

  14. We have a daughter with Autism, and other disabilities, and my brother also has Autism. We have heard far to many times that they’re just like any other kid. When we hear that, especially from someone without any children, we see red! It is very dismissive, and I think to myself, what will the world do to our daughter after we’re gone, when basic human compassion is so lacking? I find some people very disappointing. When people say, “God only gives us what we can handle” it sometimes infuriates me because they are clueless as to what the challenges are with a special needs child. When the divorce rate is 86% with having a special needs child don’t tell us anything philosophical, just listen, even be willing to ask us questions, because the more people understand, I feel personally, the more compassionate they will be about taking care of these children when we are gone, and they are adults.

  15. Bravo!! I was a mother of a handicapped baby. My son did not live to see his first year. I commend you for voicing how I felt when people would look at me when I had my son with me, the oxygen, monitor, diaper bag, & my son in the sling. I would get so mad at these misunderstood idiots who could not or would not even try to understand. I would even get so mad at the doctors who did not even understand his chromazone defect. I would research in the libraries, online, anywhere I though that I could get some answers. I finally received a packet from the government (on the day that my son died). At the time of his birth, there was only about 30 known cases in the world with this defect & most babies would not live to see a year old.

  16. I’m crying reading this, my 8 year old son is Down Syndrome, he cannot read, write, count or even talk despite having speech therapy since the age of 2. He is still in nappies despite trying and trying to get him dry for years, I worship him and he brings me joy i never thought possible but I am so lonely. His father left just after his 1st birthday, I haven’t been able to hold down a relationship since, I’ve lost my female friends as the have moved on and left me behind. A brilliantly honest look at life living with a disabled child, please people out there think before you comment on my son or anybody elses disabled child, sometimes the comments cut deep even if they are well meant.

    1. Emily, I understand your pain. My daughter wore diapers until 16, now 17, and has bed-wetting issues. “nope, sorry my daughter can’t come to your sleepover party, but I can come get here at bedtime, and bring her over in the morning” it’s too horrible to have to share WHY, And if the other children find out, the word would spread like wildfire, and my daughter would be teased and bullied (torture!). So I’m bad; I lied. I said her bipap (true, she does use one) would make too much noise, the others might be scared of her “full-face mask”, and it would be too much trouble setting it up at your home (true), but none of these are the real reason. No, I don’t feel it’s my job to “enlighten” them because they would not understand…. it must be something I did, or didn’t do….. other parents with “typical children” just don’t/can’t get it.

  17. My mother in law has a special needs child with her second husband. I never knew any of this was offensive. Now I look back and see that I could have helped her through so much. I guess a part of me was upset at how she treated my husband l, as a kid, when she remarried. Or the fact that she decided to have try for two years to have more children late in life. Now that I have read this I see that none of that matters and she goes through hardship all the time.

  18. My son is 7. He is a beautiful human being and I love him with all my heart. With the joy he has also brought me more pain anguish anger grief and isolation than I have ever known. Thank you from the bottom of my heart for articulating my feelings in such a concise nutshell. The hardship can be either infinitely compounded or eased by our fellow human beings. May we all seek to listen try and understand and reach out in compassion and kindness to one another.

  19. Me personally, I needed to hear and be reminded that God is faithful. That He will get us through. What sense in this letter is resentment towards the person that reminds you of God’s promise. I’m sure you are not much different than I, in that pretty much every person that reminded me did not have a child in a situation like mine. I can see the heart of “what would you know? Your kid didn’t have a stroke!”
    There is two sides to the coin when a person reminds “us” of the gospel and God’s promise. The mission and glory of reminding and reinforcing it to us, and glorifying our Creator in how we receive this message. Are we telling God He did not pick the right person? Are we telling Him we do not need to be reminded? Quit sending people our way?

    On the other questions; people do not know. Love and be gracious. Teach them about the situation, and how a question like that can come across. As believers we are called to rise above. It doesn’t matter what our situation is if we trust that its for His Glory and our good.

  20. My son is almost 3 and has cerebral palsy, congenital hyperinsulinism (rare genetic disorder that’s the opposite of diabetes) had cataracts (had 4 eye surgeries) has grade 2 hydronephrosis, peri ventricular leukomalacia, and now may have to have tubes in his ears. He’s amazingly smart in my opinion

    I hated being told when crying about so many doctors appts that it was part of being a parent and I wanted do scream that no its not part of “normal” parenting

    Or that I don’t need anymore kids bc they may have problems too I have a 15 month old daughter that is perfectly healthy

    Or even we should be thankful for everything james can do bc look at that little kid

    Yes my son isn’t as bad off as some but it’s still tough on me 🙁

    I don’t have any local moms or families that have kids with special needs that I can talk to and find refuge in 🙁 I have my aunt but she also tells me the same bc this is what she has been told

  21. What you said: ^All of that^

    What we heard: “Don’t bother interacting with us if you don’t have a special needs child. You can’t possibly feel or even understand the sadness associated with being in our position.”

    I get it, you’re frustrated with people. Who isn’t? But your tone in this article is very condescending toward people who haven’t been in your position but still understand/feel the pain and anxiety that you experience firsthand.

    I am, truly, sorry for the cards you have been dealt in life. I am, apparently, even more sorry that I haven’t lived in those shoes that you seem to think is a prerequisite to understanding. Perhaps you should open up to people with the way you expect them to speak to you before they ever open their mouth?

  22. As the foster parent of two teenage girls with severe mental illnesses, I hear the Saint and angel comments a lot. I love both my daughters but it isn’t easy or simple and I fail more than I don’t. There are times I have been told to give them back. Would someone say that about them if they were my biological children, most likely not.I apologize for complaining but today has been a struggle and your post was a blessing.

  23. Hello!

    I just wanted to be with you all in spirit, as I feel so alone, so often. Today has been a struggle, and it so very hard. This is not what “I signed up for” as one ex-friend said. So callous… so hurtful. Yes, it is a small step for any child, but for my child, it is magnificent! Others don’t understand….

    then again, as bad as I may have it, others can have it worse. One of my friend’s son has uncurable cancer, and may not last through the summer. I lost a baby, so I have some knowledge of the pain she will go through, but I am not walking in her shoes. I pray for all of us, including parents that are under stress daily.

    Thank you all for posting and your support. Off for another tying one’s shoe lesson….

  24. I have never felt a connection to that Holland poem and everyone does send it to you. I don’t know. It jus didn’t even touch on what we experienced. I felt so different frm other parents and so alone. I don’t know what poem there is for that!

    But yes, your responses to these common comments all touch on the fact that these comments are often saying suck it up, blaming or invalidating our experiences. It gets old!

    1. That Holland poem— there is a line that goes something like “the pain never goes away, ever.” That’s the part that did it for me.

      Nonetheless, I feel connected here, as others understand…

  25. to Confused-You heard wrong. This author’s words are intended to help ! keep reading until you get it! You obviously need to!

    To the religion person–your churchy fairy tales are meaningless and hurtful to me. Ignoring that garbage is the best way of dealing with people like you.

  26. Okay. Let me state that God answers all prayers, but not necessarily the way we want/ask.

    That aside, I want to state that I grieve for all the Little-League games, Birthday parties we weren’t invited to, and college selections. I feel “left behind” as all my friends’ (so-called)typical children are getting on with their lives. I really want to be happy for them, but I can’t help but feel envious.

  27. I am an adult with Bipolar Disorder and the uncle and guardian of a 13 year old with numerous diagnoses.

    Thank you. I know that you wrote this a while ago. For some reason it’s circulating around again, so I just saw it yesterday. Regardless, thank you.

  28. Only people who have walked in our shoes can truly understand. It is wrong to expect them to. We push people away when we are critical of their attemots although they be misguided. No one is has a magic wand to fix things and no one is going to build a statue to us as “martyrs” for the job we do. We have to tell people what we want, what WILL help and keep the criticism and the all the rest to ourselves.

    1. Faithwalk, maybe you push people away. This is merely what goes on in one’s head, not necesaarily say what one is actually thinking. Criticism: NO. Yes, no one has a magic wand, but was that necessary to point out?: NO. No statues needed. Maybe you should keep your criticism to yourself. WE are speaking up for what our children need. We do keep the rest to ourselves. I could say what I really think of your post, but I won’t.

  29. Thank you , I have never been able to come up with the words to express all the emotions I have gone through the years of taking care of my daughter .

  30. Ma’am, you are awesome. Everything you have said in this blog post, frustrations and suggestions, is very much also applicable to us disabled children who grow up in this world. It is not much easier on our end. To be honest it is something akin to a war we fight to get through each day, one that we do not know who we are fighting because the enemy is not one that can change — what we are.

    But the fact we make it this far, even if we know too many never make it to our first breath, as I am realizing after 37 years of impossible odds — including one recently, over the course of 6 months, that was the first time ever in my life that I had actually been brought down… and even then, only to one knee for one brief moment — I do not see what breaks us in the womb, what others would call “a disability” as a flaw.

    I see it as a mark of true greatness in ourselves, the perfection of inner strength unseen by outsiders who would never know it exists in themselves as well. We did not fall even while we were in the womb and had not yet even faced the world, as bad as the hits were that we took. Short life or long life does not matter — we already proved we can take the worst and keep pushing forward.

    You did not fall either, ma’am, although I can appreciate that fear you would and that you still may fear that now. That is what a real parent, disabled child or healthy child, fears each day. You did not fall. You have made it this far.

    Do not stop pushing forward. And know that even your son, Carter, is pushing forward just as strong as you are… as an example to even me as a disabled adult on what that perfection of inner strength still looks like.

    If I may be of assistance, do not hesitate to let me know. If I am able to assist, I will; if I cannot, I will let you know and immediately help find an option that may work just as well if not better. Thank you for being you, ma’am.

    You are doing far better than you may realize. 🙂

  31. I’ve heard these all.

    My youngest is three. He has ADHD, a yet unspecified sensory processing disorder, a sleep disorder, and is being evaluated for Autism Spectrum disorder. But… he looks “normal”, all his “disabilities” are “invisible”.

    The most hurtful one I’ve gotten so far, one that you didn’t address, is variations of his meltdowns being due to my poor parenting, usually along the lines of him being a spoiled brat and/or him just needing a good spanking. People can be so judgmental.

  32. You all are just as judgemental of people who do not understand our life with a disabled child as you say they are of us. Oh look i’m being judgemental!!!!

    1. Dude. It’s spelled “judgmental.” Please make a note.

      Also, I’m pretty sure you didn’t read this very carefully, but in case you did and you’re determined that I am, in fact, a horrible and very judgmental person, please feel free to disregard everything I have written here. Carry on supporting the people in your life in ways you deem appropriate.

  33. Its interesting you are critical of my misspelling, however, you use the word “dude”.
    To be clear. I do have a daughter that has cerebral palsy and epilepsy from a stroke when she was 15-months old. I do have to tend to her behavioral struggles associated with that. Also since most kids her age receive OT and PT because of autism I am around and fellowship with autistic children and their families daily. I did have this information in a previous post that was heavily edited.
    On a side note. In 10 years of being a paramedic, working in the ER’s of the pediatric hospitals in Dallas and Fort Worth, living at Boston Children’s and in a pediatric in-patient rehab hospital. I have never met a family that needed to know how to start an IV on their child in seconds.
    This article is very “woe is me” with some drama added. Receive people who do not understand our situation with an open heart. This much better than saying “walk on egg shells around me, and avoid saying these things.”

    1. Shane, I share your pain. My two children have “Dual-diagnosis”. I had to learn how to use all the medical equipment that my daughter brought home from the neonatal intensive care unit. We couldn’t even “nest” with her until we learned some basic equipment; the nurses took care of the rest. (I was loopy after that morphine drip they had given me — she was an emergency C-Section after a car crash; that rendered me unable to tend to her that first two days.)

      Nonetheless, sometimes people don’t know what to say, so they just blurt out something inappropriate. As for those friends that said “if there’s anything we can do, please ask.” So I did, and guess what they said next, “We didn’t mean it,” And the grammy that always said she’d babysit—- twice. Funny how she always had time for my sister-in-law’s kids…. Now my “kids” are almosr fully grown, and they LOVE grandma that spent time with them, took care of them for the 10 days I had to spend in the hospital (complications from a surgery). God bless her, and my door will always be open for her. As for the other set, and my own neglectful mom, that door will not open. I’m sorry you told my sister what a disappointment the first grandchildren were.

      These are the people that should be sent copies of this once you get the Holland story, or other thoughtless comments. We are all tired, and perhaps we are cranky from lack of sleep; you must know how awful it is to have to stay up with a critically ill child. (My daughter had to be fed every three hours, every feeding took an hour— checking placement of her NG tube, (avoid aspiration at all costs,), giving her the medications she would need 20 minutes before the feeding, pumping…. I barely got any sleep at all for those first 6 months. Yes, I was very cranky, earned the nickname “Grumpy” and was very outspoken to those rude comments. My husband couldn’t believe that the mellow, easy-going girl he had married was gone. Luckily, after she got off the meds, off the feeding tube, the various other equipment, I got some sleep, and I try to be nice…. but them someone says something inconsiderate or downright rude, I’ll slam them. It’s just who I am. Apologies are given when I realize I was just having a “trying” day, and perhaps I went a little too far. (I was “venting”. just like I am now,). Shane, and all other friends, I’ll forgive your misspelling anytime, if you for give mine, plus my bad grammar. (spelling? You know what I’m trting ti say.)

  34. Good morning, Ma’am, hope you and Carter are having a better day today. Richard, I hope you’re doing good too.

    Because earlier tonight I came to realize something far worse than a doctor misdiagnosing my disability of schizophrenia, even for 27-1/2 years of them.

    I don’t think I’m actually disabled at all… and I need help figuring out how in heck I’m going to get Social Security’s OIG convinced (aside from 304 days cold-turkey, which for a schizophrenic is impossible even under the best of circumstances, which I haven’t had and still kept it together) that my mom may have Manchausen by Proxy.

    Bad enough a bunch of trained and licensed PhD’s didn’t realize what some kid with a Bachelor’s in Liberal Arts figured out… but then to find out they were played the whole time by a mom with serious personal issues as a 4-yr-old who became a Miami PD and then professional PI for 20 years… who only finish junior college.

    Please, I need help, can you email me because this is horrible and I’m really not sure what to do. I apologize for posting this, but I need to clarify one thing before any other Jennies or Rachels or Confuseds start hating on you…

    What happens to people like Adrienne, Joy, Denise, and other parents on this blog and all over the world, those are real true parents who love their kids to pieces and they are my heroes and examples of the kind of parent I want to be like if I am ever blessed to have a kid at all.

    That is a parent’s love and support and faith you will NOT see in the EXTREMELY RARE case of my parents.

  35. Awesome article – I love how you not only offer a response to every platitude (“all kids do that” is my personal, all-time favourite), but show “others” how they can respond so as to be genuinely helpful, as opposed to hurtful. I’m tempted to print this out and carry copies around everywhere I go – even thhough it would have been amazing to have had when my now 21-year-old was little, I could still use it! Thanks so much for writing it.

  36. The one I would add is that I got to the stage where the next person who said “His grace is sufficient for you” was going to get my Bible round their earhole! Even though, thirty years on, I can look back and say there has always been sufficient grace, a lot of the time that has come in the form of my fellow church members going out of their way to hold me up, support me, listen to me and do really practical stuff to help me out (like doing my housework while I tried to resuscitate my baby who had stopped breathing for the 6th time that day, etc.)

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