the adventures of ernie bufflo

things magical and mundane

my child with a disability is not my hero

134 Comments

IMG_0128When we first began our journey with spina bifida, I didn’t know anyone with SB or anyone whose kid had it. One of the best things that has happened over the last two years is I have found other people who are going through the same thing, bloggers whose kids have SB, and message boards full of parents whose kids have SB. This community has been helpful and informative, but most of all, it has let us know that we’re not alone. Still, some things have become apparent as we’ve delved more into the special needs community that make me uncomfortable, and one of them really crystalized for me yesterday when chatting with a friend who also has a toddler with SB. Basically, as my friend and I agreed, it’s this:

The tendency of parents of kids with special needs and disabilities to say their kids are “heroes” makes me deeply uncomfortable. 

On the one hand, it makes perfect sense. We see our kids go through so much more than most typical children deal with– surgeries, therapies, challenges, and pain, and we see our kids thrive and survive in spite of it all. We’re impressed by their resilience, and we want to express that. Also, in a world that marginalizes and devalues many people with physical and cognitive disabilities, we want to affirm the worth and value of our kids. I see no malice there.

But what concerns me is that calling our kids heroes is just another form of dehumanization and marginalization. Our kids are KIDS, first and foremost. They’re people, human beings, whose value lies simply in the fact of their personhood, not in milestones or hurdles overcome. When we put them on pedestals and call them heroes, we make them something other than human beings. And we give them a standard that, at times, may be hard for them to live up to. They might not always feel like being heroic. Sometimes they might just want to be kids, people, frustrated and fed up and overtired and hungry and in a bad mood and all the other less-heroic stuff we feel from time to time.

Having twins, one of whom has SB and one who doesn’t makes this really apparent to me. Both of my kids are just people, existing in the bodies they were given, facing any challenges that come their way. To borrow a phrase that I learned from Sesame Street*: having spina bifida is normal and natural and fine for my daughter. She’s not heroic for existing in her body any more than anyone else is, because she has always been this way. Calling her a hero is just another side of the coin from feeling sorry for her, and I don’t want people to do either. I want her to have the beautiful freedom to be a complex, complicated human being who both overcomes challenges and makes mistakes, who can be joyful and angry and every other emotion there is, with no pressure to be anyone but herself. She’s no hero, she’s something much more magical and mundane: a little girl, full of untold potential, just like her sister.

*We recently watched an old episode of Sesame Street which featured a young man named Rocco who happened to be blind. He is introduced to Elmo, and when Elmo finds out Rocco is blind, he says “I’m sorry.” Rocco tells Elmo he doesn’t have to be sorry, because being blind is normal and fine for him, just like being able to see is normal and fine for Elmo. I really loved it. Plus, Rocco is a great singer.

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Author: erniebufflo

Writer. Hugger of trees. Lover of food, literature, politics, feminism. Wife to @orzzyo. Mama to twins Etta & Claire, dogs Bessie & Olive, & one not-so-Tinycat.

134 thoughts on “my child with a disability is not my hero

  1. Thoughtful post as always. I learn so much from you. I need to watch more Sesame Street.

  2. I really love this post. I was a kid with some significant medical issues, but my parents were very matter of fact about them. Through this, I learned never to allow that to label me or to limit me beyond the actual physical limits of what my body can or can’t do (& we all have different levels of “able to do”). I was blessed to be given this gift by my parents, and am always happy to see this gifted by other parents too. I hope they always believe they can be amazing, just like you are!

  3. You are writing some good stuff these days, my friend!

  4. This fits beautifully with something I’ve been pondering since a radio personality described a person born with all limbs as “whole.” He was saying it to laud those born (implicitly) unwhole, which left me bemused and a little irritated. Each of us is whole in her own right. That “whole” might look different in different people, and some might face more challenges, but we are all whole and doing the best we can with what we have. Better to let someone be who they are than be measured against another person’s desires, no matter how well meant.

  5. Love this post. Well done and I couldn’t agree more.

  6. Thank you! Hero worship is too alive and well in our culture. As a adoptive family we have come in for many comments along theses lines. We just love.

  7. Thank you so much for writing this. I have Spina Bifida and hate being called ‘a hero’. My mom holds the same view as you “She’s just a kid doing her thing.”

    I considered ‘a hero’ to be someone who willingly acts contrary to nature in the face of danger to others (i.e. Running into a burning building or jumping into a frozen lake). I do not have the choice to be disabled or not. Sure, I could sit around like a lump on a log, but I don’t find it particularly heroic because I’ve decided to get my butt in gear and live life.

    I also despise hearing “I’m sorry”. I even wrote a blog about it because it annoys me so much lol.

    Great article and I look forward to reading more.

    • Thanks arkansasrose! Please share any snappy responses you use for the “I’m sorry” folks. I am determined to help people learn not to say that to folks!

  8. Just popping over from HuffPo before your blog explodes with traffic. Congrats! I enjoyed the essay very much and agree with you. I’m an SB twin mom and writer too- we are a small but awesome club! I too get very weary of other SB parents talking about the heroism and miraculous feats of their SB children. One thing I have come to realize very completely in the six years since finding out we were having twins and the SB diagnosis is that everyone is “disabled” in some way; we all have our challenges and all have our triumphs. Our kiddos just have theirs so much more on display. Good luck with your writing and raising twins. It just gets better and better!

  9. 15 years ago when I had to tell my sons, then age 9 and 6, that their brother would be born with SB, their response was “okay, well can he play Nintendo?” I said, probably (we knew it was a lumbar level). And they say, “well, mom, that’s all that matters.”

    It’s kept everything in perspective since then. We are lucky parents!!!

    • Kathy: Ha! I love that! Kids sure can teach us a lot about acceptance if we let them lead the way.

      • Yep. Nate is now 15 and doing quite nicely. His only issues really are short term memory when it comes to school. He uses a wheelchair just fine — amazing how people think that is remarkable – really? He’s had it since he was 2! And he’s pretty good with self-care (as much as you can expect any teenage boy to be).

  10. I feel extremely heartbroken for you, my children don’t have to deal with struggles that your daughter has to face but my children are still my heros, and they are still children and tiny little people..
    I’m sorry you can’t actually look deep into the word “hero” and see just what it means to have a hero for a child!

    You clearly need all the prayers you can get!

    • Everyone needs all the prayers they can get, so I’ll take that. But neither me, nor my kiddos need anyone to feel heartbroken for us. We’re joyful, loved, and whole. And I’m not sure why you think my kids aren’t “children and tiny little people.” Yes, they are. And they are perfectly loved for all their imperfections. I’d much rather be a human relating to humans and sharing intimacy and love than living with heroes.

      • Well said!! I find it interesting that people on the other side of this issue seem to have all the answers.

      • Amen Sister! You supersede class and I need to take some lessons :)

      • Ahhh “perfectly loved for all their imperfections” – now that is the definition of love. While I believe most people embrace the compassion of others, I doubt many would appreciate pity. Feeling sorry for someone seems to imply that the other’s life is “less than” somehow.

  11. Hi,
    My name is Rocco, and I am the young man who was on Sesame Street a while ago, talking to Elmo about blindness. I am so honored, and inspired Buy this post, and the fact that you took one of my lines from the Sesame Street segment that impacted you, and related it to your daughters. I’m now 17, and just got my first Guide Dog in June. I love her, and she has really enhanced my independence. But I have always felt that my disability makes me who I am, and I love educating others about my everyday way of life. I really enjoyed reading this post, and was happy to know that my message has made a positive impact on someone else’s life. :-) If you would like to contact me, my email is:
    rocco@musicbyrocco.com
    Again, thank you so much! Have a great night.
    Rocco

    • Rocco: Oh my gosh! I am so thrilled that you read the post and left a comment! Your performance on Sesame Street was wonderful and so refreshing– when you told Elmo not to be sorry, it was like a light bulb moment for me, and I will definitely be borrowing your words in the future when people tell my daughter they feel sorry for her. Thank you for helping teach kids and grownups that having disabilities is just another way of being a person, living life in the world. You rock!

      • Awe thank you so so much!! :) I really appreciate that. Have a great weekend, keep in touch

        Sent from my iPhone

        >

  12. I also have a child with SB, although he is now 33. I agree with your comments. I have always tried to remember and treat him just like his older sister. Did I mess up occasionally…yes. Did I maybe react excessively with some of his achievements or milestones….guilty. But it is so important to try to make any child with a disability have a “normal” life….”normal” for them. I am equally proud of both of my children. You will find, as the years go on, that your daughter may need some counseling, because at various times, they DO tend to rebel against the normal of their life. But in general, it is possible for a child with SB or any other disability to lead a normal and full life, without the hero syndrome. And so can the parents!! Just as the children are not heroes, neither are the parents! I never felt any different than any other parent, just had more on my plate. But it was just my life…..and a good life it was….and is!

  13. Hi there! My 3-year-old daughter has SB, and I am totally guilty of calling her a rock star. While I have taken this post to heart, I am not ashamed of the fact that I do find my daughter inspiring and, at least right now, I love celebrating her victories and sharing them with our friends and family. Still, I also wonder if I am putting extra pressure on my daughter– something I don’t want to do at all. I am truly proud of all three of my daughters equally and find them inspiring in different ways. My Emma rocks at reading and taking care of her little sisters; my Kendall rocks at gymnastics and would give you the shirt off her back; and my Brooklyn rocks at overcoming obstacles and is extremely loving towards others. They are all rock stars in their uniqueness. But at the end of the day, they are my gifts from God and I am thankful for each one them.

    I agree that we should treat all our children “the same” on some level, but I also believe in celebrating differences. Do I overcompensate a little? Yes, but I believe that brings awareness. We are not to the point where we can redefine “normal,” but by celebrating differences, I think we can play a part in getting to that point. There is no “normal” because it is different for all of us.

    I guess I’m just saying that while I see your point, I think we, as a special needs community, need to realize that we all handle things differently and that one way is not better than the other. I don’t think there is ” hero syndrome” any more than I think there is a “babywearing syndrome” or “co-sleeping syndrome.” This parenting thing is a journey and none of us have the right answers.

    Please know that I don’t mean any disrespect. I realize this is your personal blog and you have the right to share your opinion. In fact, you doing so gave me a lot to think about. We all have a lot to learn from each other. :)

    • Lisa: it’s totally true, every parent/child relationship is different. I don’t think you and I actually disagree all that much. What you describe is praising specific traits or specific actions, which I think is slightly different than calling a kid a hero full stop. Of course I tell Claire she’s amazing when she comes through a surgery or has a good day in a therapy session, just like I praise her sister when she shares or figures out how to open a jar or whatever.

      • I think you just hit the nail on the head. There is a huge difference between honoring a child’s specific victories as opposed to assigning their entire being to the “Hero Box”. My 7 year old son has SB, and I am so grateful for the blessings I have in being his Mama. I feel proud of him when he meets a goal, especially as I reflect on the months and years of hard work it took for him to get there. But I refuse to cheapen his triumph by instilling in him a sense of entitlement. My husband and I tell him, “You can do anything; you just have to find the best way for you.” Our best hope for him is that he will succeed as HIMSELF- his disability doesn’t make him better or less that anyone else. His opportunities and struggles are his own. Thanks for sharing your perspective on this important issue.

  14. Hi Sarah! As a fellow spina bifida parent, I think you’ve captured what I’ve felt for years now. You’re a great writer and clearly a very insightful mom! Thanks!

  15. After reading your post, I believe “hero”
    has more than one meaning to each
    special family. Climbing the uphill battle together is what really counts. Support,
    love and hope!

  16. Yes…someone gets it…they finally get it! I have a daughter with SB, too. Some see my parenting style as insensitive or uncaring but that’s really not the case at all. I am tough on Skylar…just as tough as I am on my able bodied son. Why? I am not raising a victim. I am raising a child that will, by the grace of God, be able to adapt and overcome obstacles and not use her disABILITY as a crutch. Other than not being able to run a marathon along side other kids, she’s really no different on the inside. We have a young woman that lives on the corner that has SB and though a random conversation she mentioned kids asking her if she missed using her legs. She thought that was funny and absurd. “Why? My legs have always been this way and wonder if you guys feel weird with those extra appendages to worry about.” I couldn’t help but laugh. Thank you for being so real and honest about this. I totally get it and completely agree. Our kids have SB, SB does not have them.

  17. Well said. My hope is Sb will be the least interesting thing about my daughter. :) The after thought in a description of her.

    • Brooke: I love that. I want people to know and love both of my daughters for their minds and thoughts, for their ideas and for their love. I certainly don’t want to minimize Claire’s disability or pretend it doesn’t exist– it’s a big part of her life. But I want HER to define what it means to her, rather than let others define it for her, or worse, use it to define her.

  18. Thanks for sharing this blog. Makes us aware of things we might not have thought about for us that have kids with no disabilities!

  19. This is an awesome post. I have a “special needs” child, but in a different way. She’s adopted out of the foster care system and spent a good portion of her life living in trauma. YES I am proud of her and how far she has come. but NO we will not validate her abusers by allowing her to be a victim. Her past is part of her story but it is not who she is.

  20. It’s extremely touching to see how deeply you thouoght this out. And I agree with you, especially the part about some parents telling their kids they’re heroes – some definitely will not want to feel like being heroic.

    Great Post!
    Katie from the Business Blog

  21. i think it’s charities that call special needs children hero’s, charity being the fourth biggest industry in the world, but your 100%, you are actually putting pressure on the little ones, who just want to get on with it. i’ve witnessed miracles, and just as a tip, play some bob dylan music, “oh mercy album”, it moves little ones and puts them into their own space, blessings to you. i have a picture on my blog of the man in the sky, never give up believing, amen

  22. Completely agreed, but I think when other people call their kids heroes, we should just smile and accept it as they want to say something other that “We are sorry for our kids” or “Poor Jimmy, look at him”

  23. I get what your saying, but I also get what other parents are saying when they call their children a hero. Yes, your child is another amazing little girl, just like the rest. But her strength and courage is far beyond an average child. The amount of struggle and pain a child with SB has to go through can’t be compared to a child born with no disability. For possessing that much strength, they are heroic. I don’t get why you said she wasn’t heroic existing in her body because she has always been this way. It’s a choice to be strong. Yes your daughter has always been that way, but she could give up at any moment. She can stop trying so hard to progress, because as we all know, that would be easier for her. She could become 100% reliable on you for every little thing, because as a mother, you sure would do everything for her if you had to. If she is currently the age she was in this picture, then she has a long way to go. As long as she’s not throwing in the towel, that in itself is heroic to me. She probably already looks at her sister and realizes she’s different. She needs that extra support… I doubt that calling her a hero is putting too much pressure on her. A hero doesn’t mean she possesses super powers. A hero just means she posses more strength than us. AND SHE DOES. We have never needed that much strength.

  24. Reblogged this on the weed. and commented:
    A thoughtful and balanced view! I enjoyed reading this very much.

  25. Such an important message – I am constantly running into parents with the “my kids a rock star” syndrome. Most kids are just kids, not future Monets or Michael Jordans, let them enjoy being themselves !
    A favorite quote – “You are unique – just like everybody else!”

  26. Thank you for this post, I enjoyed it.

  27. Applause all around for this post. You are a great parent!

  28. A memorable post, thanks for sharing it with me.

  29. Yep, you reinforce my sentiments exactly. I have a son who is paralyzed from a spinal cord injury. He lives a fairly normal non-heroic life. He just happens to need a wheelchair to get around. We are proud of his life choices following “the accident.”

  30. Thank you for sharing. I think this is a lesson many parents probably need to embrace. Sesame street is full of hidden gems. Thank goodness they are on Netflix.

  31. That was a beautiful and eloquent argument and you have brought me round to your position (although I was half way there myself already). This position should be published, perhaps you should write a book!

    Heroism is being able to deal with a situation above and beyond the normal not dealing with the everyday. Dealing the everyday is life what as humans, the most “successful” species on the planet, we do. If anything these children should be praised as truly Homo Sapiens, being able to deal with adverse conditions their whole life. All the best to both of your children and yourself in being human.

  32. I was slightly taken aback when I saw this title and wasn’t sure what to expect, but after reading, I feel I have the same opinion. I hope I remember this mindset by the time I have my own children.

  33. Thank you for sharing this with us…

  34. Thank you for writing this. My son was born with a CHD, so we’ve been through all of the appointments, procedures, surgeries, and I have always felt kind of awkward when people comment on “what a warrior he is” or how they’re “so sorry” about everything. I don’t feel sorry for our children, but that doesn’t mean I am not proud of them just like any other parent. Very well written.

  35. I’m a physical therapist and work with kids who have any number of disabilities. I try to treat them like the kids they are. Many of them have had more surgeries in their short lives than I’ve had thus far in my long life, but as you point out so eloquently, to treat them as anything but kids does them a disservice. You’ve written a beautiful piece, which should be required reading for everyone.

  36. I am an adult living with Cerebral Palsy. My immediate family has never treated my experience of daily life as heroic but lots of other people still do. If I had a dime for every time some stranger came up to me in a store to tell me I was “inspirational” I would be rich. I would at least have something tangible to make up for the nauseated feeling which inevitably settled into my stomach every time such a sentiment is altered.. Thank you for being one of the parents who doesn’t climb on the heroic martyr bandwagon that seems to accompany people’s perception of disabilities in general. When your daughter is older I am pretty sure she will appreciate that when she is older. Both your girls are adorable by the way

  37. Pingback: Η κόρη μου έχει αναπηρία – δεν είναι ηρωίδα | Eimaimama.gr

  38. Not a martyr; your daughter. Exactly.

  39. Reblogged this on The SDF Dispatch and commented:
    A wonderful antidote to the trend of using children with disabilities as “inspiration theatre,” because some people don’t realize that dehumanization can come in many shapes and types.

  40. Thank you so much for this incredible post. I found myself nodding at so many of the great points you made, and I really admire your poignant writing style. I look forward to following your blog!!

  41. Loved your article – thanks. I think of a hero as someone who does something out of the ordinary for someone else. No athletes make my list unless they do something unselfish with their fame. And by that rule, your girls don’t make my hero list – but you do. Thanks for changing my perspective. I hope I can catch your NPR spot on a podcast.

  42. I adore this article and I think you really hit the nail on the head. Out of curiosity, how do you go about balancing the fact that one of your children has been diagnosed with SB and one hasn’t? I love sesame street because it always has a tendency to throw in little moral tidbits that kids truly do pick up on.

    • Yanniesaurus: I guess I’m not sure what you mean by balance? I’ve always been glad that Claire has her twin sister, because she will always have a friend and ally, someone who will tease her and fight with her and always treat her as “normal” and love her and stand up for her and always be there for her. It’s also been great for her development to have a same-age peer around, to inspire her to push for mobility. I think they are each other’s greatest gift.

  43. This is beautiful and I agree that the “hero role” can be too much for kids. May many good things come your way as you travel the road of SB.

  44. I agree with you. I do think, though, that the adult who takes care of the child is a the hero.

  45. I love the fact that you treat your child as any other cold. We have one daughter with learning disabilities and we have always said we will not enable her but encourage her to be as “normal” as possible. Not to let the issues she has to work through stop her from being like everyone else.

  46. I think in out culture we are very quick to give out hero status to people without thinking too much about what that means, or why. An insightful post. Thanks for sharing.

  47. Brilliant. Thank you for this. Recognizing our place not just in the world but among it is a dying Art. We are only as strong as those around us.

  48. nice thought ^^ usually i would be one of them who call children with disabilities as heroes for their struggle ^^

  49. I wrote this from a kind of backwards perspective. Wondered what you thought of it.
    http://ktskindwords.com/2014/01/02/expectations/

  50. This is really interesting, and I can definitely see both sides of the argument (well, it’s not really even an argument). I lost my dad to cancer just before I turned 19. My mom and I clung on to each other for dear life, only to lose my grandmother a few months later. We got through it, but we weren’t being strong because we chose to be. We had to be strong because we had no other choice. And sometimes it really sucks.

    • Lilbrigs: How horrible to lose two people so close to you so close together! I totally get what you mean about being strong because you had no other choice. When I was going through my own life-threatening health crisis, folks told me how strong I was. But when the other option is dying, well, strong becomes pretty easy!

  51. Thank you. Common sense is rare these days.

  52. You write beautifully and I completely agree with you here about the passivity of ‘othering’ people with disabilities. Really interesting that you pointed it out..I loved the bit where you talk about what you want for your daughter. You can feel the mother-love from here!

  53. Your title was very intriguing , & pulled me to take a minute out and read it . What can I say , you wrote down the simple facts that goes by ignored , but now that you pointed out , many people will think over it. its really very good message ….

  54. I agree with everything you said. I was in education for years and am so tired of everything, and everyone being “awesome” – we are so busy building self esteem for kids that they aren’t learning how to do it for themselves – I’ve suffered a TBI and have physical challenges because of it, but I’m not a hero because of all I’ve done to be successful in life – that’s just what human’s should do

  55. i love this! i’m a special-ed teacher by day, blogger by night and this is such a perfect description of my exact frustrations! i’m always getting told that i ‘must be so patient’ to work with children with special needs. what? no. they’re people, and i’m good at working with and understanding people. this line of work doesn’t require any more patience than say, being a decent & compassionate human being. i love your post and i’m going to share it with my networks outside of the special needs world to help them gain our perspective. thanks for writing : ) –Sara via hellolizandsara.wordpress.com

    • Sara- you hit on another phrase I hate, “it takes a special person,” as if people with disabilities aren’t just inherently lovable and worth knowing. It doesn’t take a special person to love my Claire. She rocks.

  56. My speech, seriously. I agree with you and love the quote, we can always learn from these simple things!! Thanks for the post

  57. This is so beautifully written it brought tears to my eyes. I think both your little girls are very fortunate to have you as their daughter. <3

  58. Wonderful perspective–our kids are kids–first and foremost–we need reminding sometimes. Thank you for being so candid about your experience.

    Congrats on being freshly pressed:)

  59. This is a very good point. I have never thought of it that way and it is very true. I totally agree with your point.

  60. I love this! It is such an important discussion to have, and it’s such a difficult thing to express. My brother has CP and people have so many ways of responding to this: strangers and family included. I know a lot of their responses are well meaning …but like being called Hero, some of the labels that are used for children or adults with disabilities make me uncomfortable and it’s hard to articulate why on the spot.

  61. I couldn’t agree more! I had parents who called me a “hero” all the time over my health problems- and nothing made me feel worse because I’m really just your average teenager behind it all. Basically, I LOVE THIS ARTICLE

  62. Reblogged this on sudhakarhema and commented:
    A Must Read for Parents

  63. Love your heart on this! My son was diagnosed with autism and it’s all my wife and I can do to remind people that he is not my “autistic child”- he is Aiden. As Aiden, he will have good days and bad. He will have days full of success and others full of frustration. We tend to celebrate when he becomes more like us, yet how often do we celebrate him- just because he is Aiden? I must admit it takes intentional effort to focus on him and not only his progress toward a milestone. Great reminder about the importance of individuality and the value of life, simply because it is life.

  64. I agree what you are saying it is important being a parent to first feel normal ourselves and than start looking towards the needs of the kids. In my opinion these experiences are given for a reason. It is better to accept and move forward. Nobody is lenient in this world. According to me , your kids are going to be very smart in the future. Kudos..

  65. I see what you’re saying and I completely understand what you’re saying and your point of view but I disagree to an extent. I think it all depends on how the parent is going about referring to their child as their hero.

  66. I was bored and snooping through the “Freshly Pressed” page when I saw your blog post. I have neither a kid (I am a kid myself) nor I don’t know anyone (personally) with a disability, and I am not sure what exactly I’ve thought about when encountering children with disabilities, but I know that your post struck me funny, so I must’ve been way off. Thank you for posting this. As without bias and whatever I thought I was, this post was an eye-opener. Wishing health and happiness to you and your family!

  67. Thank you for this: “When we put them on pedestals and call them heroes, we make them something other than human beings.” I could not agree more. I have a 3 yr old with a fairly serious diagnosis, and she is my love, my daughter, and, most importantly, her own person.

  68. Xing DaVinci”Thanks for your insight”

  69. This is so spot on. I don’t have kids myself but if I did, I’m sure I wouldn’t want anyone to call one of them a hero just because he or she was born with special needs. This hero thing about people with special needs has always annoyed and even disturbed me. It appears to me as victimization and pointing out people as non-human. I do understand why people feel the need to do this but I just think it comes out wrong and cements the stigma around some people. Gosh, I even remember as a kid how adults told me and my friends that you shouldn’t even look at a person with special needs, because that’s rude. It always confused me- I thought it was more rude to not even look at them. I mean, I look at a lot of people each day. If I don’t take a look also at people with special needs, that would be what stigmatized them. Not the looking. After all, there’s a difference between taking a short, neutral look and staring in disgust.

    I like that you pointed out how your daughter was born this way. She doesn’t know any other life, so she’s not any more heroic than anyone else. She’s just a kid, a human being. With her own personal struggles, joys and griefs. Being different doesn’t necessarily make you a hero, not even if that difference is related to some diagnosis.

    I can also relate to my own struggle. It’s not the same thing because my struggle was against bulimia, OCD, panic disorder and borderline. However, a lot of people made me feel very alienated because they felt “sorry” for me. Also, whenever I did some progress, they talked to me as if I was a three year old and were overly ecstatic about how I had improved. When I got better, they talked of me as hero, All this just made me feel less human and not at all empowered. So maybe we should just ditch this hero talk.

  70. Pingback: My child with a disability is my hero | eichefam.net

  71. I’m certain this will get lost in the midst of your blog blowing up with comments (good luck :), but I’ve written about my daughter, who was born with an extremely rare combination of disabilities, and why I call her my hero. If you have time, have a read. I have a feeling our opinions aren’t so far apart, semantics notwithstanding.

    http://eichefam.net/2014/02/06/my-child-with-a-disability-is-my-hero/

  72. To me, on this earth, a hero is one who lives life fully, to the max, no matter what his or her circumstances, to one who knows the value of a human life and puts that knowledge and value first before money, before fame, before technology and before the praise of society.

    To me, a hero is someone who has struggled with something difficult, or painful, yet continues to smile, and to live life as if the struggle is just another part of life. But they do that over years, not over the space of a few moments. Heroes take years to happen.

    My first Hero is God. None of my heroes have won oscars or trophies.

    And adult heroes, whether secretly or publicly, have proven themselves and go on to live their life fully, to the max.

    Yes, children are children. Children are born. Heroes are grown. Like a seed, anyone can be a seed, but only a few can be a might oak tree or a fabulously, strong bamboo plant. Our children are our seeds, and with enough nourishment, example, gentleness, kindness and teaching, they do, indeed, eventually grow to be heroes.

  73. Pingback: my child with a disability is not my hero | I Forgive You, but I can't Forgot

  74. Insightful perspective. Cheers.

  75. Reblogged this on rockycordle and commented:
    So many challenges in life but, the love for our children can never be compromised by anything life brings our way

  76. Pingback: Tragic Flaws: Heroism and Disability | Kate Browne Blogs!

  77. Hi. thanks for this incredible post. I can relate to your story on so many levels. My son is now 23 and was born with Septo_Optic Dysplasia which is a condition that affects hormones, vision and cognitive abilities. I never wanted people to feel sorry for him or treat him any different than other children his age. He’s not my hero either. He’s a young man who loves music and playing the piano.
    I taught him how to do many things on his own and how to grow into an independent adult. He has made mistakes but has learned from many of them. He loves his life and all its challenges and rewards. People look at him now a simple say – what a handsome, talented, caring young man. Many of them look past his disABILITY and see him for who he is – a human being.

    Look forward to reading more of your stories.

    All the best.

    Dionne

    • Thanks, Dionne! As I’m just starting out on this parenting/disability journey, it is always so encouraging to hear from adults with disabilities and their parents to let me know everything is gonna be it’s own kind of OK.

  78. I like your take about our kids not being our heroes. Your right, kids need to be kids to laugh and have fun. Some of my greatest memories is playing with my son and being goofy.

    I commend you and your child who has SB. I’m all of you have challenges, but though anything God will bring you through and you can overcome anything.

    May God bless you and your family!!!

  79. Well written. I have often been called a “hero” or “inspirational” for dealing with my disability. I am always perplexed by that. It is normal for me and sure, things are more difficult but being called a hero for doing unheroic things like living on my own or having a job has actually lowered my potential in other’s eyes and thus my expectation of myself. I liked this: “She’s no hero, she’s something much more magical and mundane: a little girl, full of untold potential, just like her sister.”

    Thanks for sharing.

  80. Strongly agreed , with what you have said. Behaving in such way or treating children in special way does not help them , but creates more problems for them….. They are humans treat them in a normal way … no one choose to have some problems , its all decided and destiny from the Creator , he knows best and test his people the way he wants.
    If he has challenged us in one way , surely He will help more on the other way.

  81. My dad and my brother both have SB and I found this really interesting. Thanks for sharing. (:

  82. Really well written, I look forward to following!

  83. This is all so true “Hero” is no better than ” Special” and we all know that ” Special” is a way to mark a child as different and or less important. Thank you for this dialogue this is so important and something I can defiantly relate to.

  84. Pingback: Freshly Riffed 64: I’m Truly Privileged To Look This Good Without Clothes On | A VERY STRANGE PLACE

  85. Wise words “scottjm52″ Hero or Inspirational.

  86. Thanks for this post! I enjoyed reading your thoughts!

  87. As a person who was born with a disability, THANK YOU.

    • Rose: Thank YOU. It is so meaningful and encouraging, as I’m just starting on this journey with my daughter, to hear from people with disabilities who affirm that we’re headed in the right direction.

      • I’m in my 30s. My folks never voiced the “heroic kid with a disability” sentiment, but I remember getting it a lot from other people. It’s EXHAUSTING to feel like you need to be someone’s example/role model/inspiration all the time. I remember that I got detention in high school for cutting class and almost all of my peers were flabbergasted. I was like “What? You’ve never cut a class?”

  88. Reblogged this on Rose B Fischer and commented:
    This is a long post. If you want to understand me a little better, please read it. If you don’t have time, here’s the TL;DR version.

    On the one hand, it makes perfect sense. We see our kids go through so much more than most typical children deal with– surgeries, therapies, challenges, and pain, and we see our kids thrive and survive in spite of it all. We’re impressed by their resilience, and we want to express that. Also, in a world that marginalizes and devalues many people with physical and cognitive disabilities, we want to affirm the worth and value of our kids. I see no malice there….

    But what concerns me is that calling our kids heroes is just another form of dehumanization and marginalization. Our kids are KIDS, first and foremost. They’re people, human beings, whose value lies simply in the fact of their personhood, not in milestones or hurdles overcome. …

    They might not always feel like being heroic. Sometimes they might just want to be kids, people, frustrated and fed up and overtired and hungry and in a bad mood and all the other less-heroic stuff we feel from time to time.

  89. I get your point exactly. What wonderful insight you have. Your two girls are very lucky to have you as their Mom.

  90. I’ve learned a lot from Sesame Street. And I agree – they are “normal,” not “heroes”! I had a friend who was a busy attorney, a single man & I was a single mom (but no, there was nothing there). Though he had a daughter, a young girl with SB. For our enjoyment, my kids & I would include her in exciting activities. Such as, one day we took her to a Rennaisance Festival, about 2 hours from our home. She had a loose bowel problem & all there was, were these port-a-potties. Somehow we managed, but her underware was soiled – so I took off mine for her to wear over her absorbent pad. All in a “normal outing” I thought – though her father said I went above and beyond (when his daughter explained to him what happened) – I hardly gave it a moment’s notice. I guess, if anyone is a hero, it is the parents who devise clever ways to handle stressful situations. My kids & I only stepped in, every now & then – it is the parents who go through extraordinary events every day! God bless you and your family. All of us need to be kept humble, even the SB kids – so you are right…keep the “hero” stuff to yourself – just think, we are the lucky ones living here in the USA. Imagine if you have a physical challenge in some of the poorer countries?!

  91. Yes!!! I work/study in the disability sector, and this post expresses exactly what more people need to know. If you’re interested in theories that support your thinking, Social Role Valorization is a good place to start :-) Inspiration Porn is quite interesting, too.

  92. You’re absolutely right. The last thing our kids need is any more pressure. They have doctors and therapists and teachers and aides and caseworkers all making assessments and IEPs and diagnoses. The kids can’t get a break! Leave them be and let them enjoy being kids to whatever extent they can.

  93. I, too, have a ‘special needs’ child. She is 29 right now, and she is my joy and my heart, but hero? Yes, I admire how she has carried on and had a huge impact upon so very many people, but I agree with you . . . why should we place that label on our children? To me a hero is one who does something to rescue someone from destruction (i.e. drowning, fire, etc.). Thanks for sharing.

  94. fantastic post! Thank you for sharing yours and your children’s story with the world….

  95. Amen. There are so many pressure on kids to compete with kids these days that its both stressing to the kids and parents. Each individual kid have their own potential and we as parents have the responsibility to help our kids reach it without comparing with other kids.

  96. such a great post, and i love the part at the very end about sesame street , rocco and elmo…makes the point perfectly. thank you!

  97. Hey there, I just came across this post and I agree completely. My son has Down syndrome and it makes me extremely uncomfortable when people think he is a hero for doing the most ordinary things. I wrote a post on my blog not too long ago on the same topic and thought you might be interested in reading it. He’s no Super Hero | Embracing Wade
    http://embracingwade.wordpress.com/2014/01/22/hes-no-super-hero/

  98. What is better than teaching our children humility, am I right? I see so many parents who set their children up for failure by constantly shoving them onto a pedastal; meanwhile, their less “exceptional” children recieve half the attention and praise.

  99. Those with impairments have to try harder than any of us…and they are heroes, just because they made it through another day!

  100. The Disabled child is first and foremost a child, with all the rights that entails, and you, mom are a hero, for letting them be children. That’s how I raised my disabled daughter, too…but they get to be heroes, too. keep up the good work!

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