Wednesday, May 15, 2013

Please, spare kids with special needs the pity


I have an allergic reaction to pity for Max. When people look at him as if he is pathetic (aka The Pity Stare), or cock their head and say "Awwwwww..." if I mention he has cerebral palsy—even as Max is standing there, looking perfectly happy—my face turns a little blotchy, I have to swallow hard, I get a bit prickly.

I realize that the pity isn't coming from a bad place. Usually, it's misguided kindness. A lot of people out there have no real experience with kids who have special needs and they just think our kids have it bad, so bad. Still, it rankles.

So you can imagine my reaction to the song "Unlucky Child" and the accompanying video about Aden, a 6-year-old boy with cerebral palsy. The singer, Ireland's Marian Bradfield, was inspired to write the song after seeing a documentary about Irish poet and author Christopher Nolan, who had CP and super-supportive parents.



The lyrics and Aden's presence seem incongruous. There's Aden going about life at school and at play, laughing and being his beautiful self. And there are the maudlin lyrics and music telling us all how unlucky he is.

Let me just ask...

Why focus on unlucky?
Do I think Max is lucky for having cerebral palsy? Hell no. Do I choose to make that a focal point of his existence? Hell no. The cerebral palsy is one part of who he is. It does not define his existence and make him—or Aden or any of our kids—an "unlucky child."

Why so morose?
Marian has a beautiful, soulful voice—but could she have seemed any sadder, as if someone had died?

Why thank parents for loving the child?
"Thank you for giving so much love to me, an unlucky child," the refrain goes. Alert! Alert! We parents of kids with special needs love them because they are our children. It's not as if I am doing Max some major favor loving him because he has special needs. Loving our kids is what we parents do. Our love is unconditional.

Why all the focus on what a child can't do, instead of what he can?
"I'll never run with you but I feel your touch just the same..."
"Some kids are better off than me, they can run and jump and play..."
"I'll never speak to you but I hear you call my name..." sings Marian.
Someone should inform her about speech communication apps. And about not comparing kids with disabilities to other kids—"better off" is subjective.

Also: Aden does not need to be set "free," as if he is imprisoned. Sure, children can look in his eyes and "see his dreams" but they can also try talking to him.

I know, I'm so grouchy about this video, and the singer meant well. How many singers out there have written songs about kids with cerebral palsy? Right. Too bad it's so sad.

A co-producer of the film, Mike Considine of Chicago's Cross Country Productions, first told me about the video. When I emailed my reaction, he said the purpose of the song and video is to "show how children with special needs can enjoy and make the most of their abilities." He reassured me that Aden's parents and Marian spoke, so "everyone understood the meaning of the song." The video crew generously did the project free of charge, because they felt it was an important message to get out there.

The video does provide a glimpse of what it's like to have Aden's form of cerebral palsy, and what it means to parent Aden. The message at the end is positive and awesome. Yet that doesn't balance the fact that the song is laced with woe-is-he pity.

This is what I'd like to tell the people of this world who pity children with special needs:

Our kids have a great love for life. Aden does, as you can see in the video. Max finds joy in the same things other kids do—ice-cream, firetrucks, movies, farts. He is not sad about who he is. Do not be sad about him. Do not cast a gloomy shadow onto his sunny presence.

Our kids might not move or talk like other kids do, and may require significant help from their families, but they do things in their own way. Or they don't do them but they adapt. Different is not pathetic. Delayed is not pathetic. Dependent is not pathetic.

Our kids have more determination in their little bodies than some people will have in a lifetime.

Our kids have abilities. Real abilities. You just have to peer past the wheelchairs and the cerebral palsy and the disabilities to discover them. Break out of the pity trance, people, and say "Hi." Encourage your kids to do the same.

Our kids are achieving all the time, something worth celebrating. Sometimes the progress may not seem major to others. But in our world, learning to grasp a spoon or magic marker or articulate a new sound are a Big Deal. We parents are thrilled with the inchstones.

Our kids deserve respect and equal treatment, not pity.

Max is not yet aware of the pity factor, and I hope he never will be: How crushing would it be to know that others think you are a lesser human being? Or that you are an "unlucky child" (who grows into an unlucky adult)? Our kids need every bit of confidence they can get in this world.

As Max's mom, I need empowerment too. And when someone makes my child out to be a sad, unlucky story, it's unsettling—and sad.

I invite Marian to make a sequel to the song. She can call it "An Amazing Child."

Photo: Screengrab, An Unlucky Child video

70 comments:

  1. OH!!! Preach on, Ellen!!!! Don't pity my child for what he currently cannot do, and don't ever make the mistake of thinking his life is somehow less than a typical child. And please, don't call parents of special needs kids heroes - we are just loving our kiddos like we are supposed to do. This song annoys me.

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    1. Exactly! We are just like any other parents who love their kids, even if we have more responsibilities.

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  2. I couldn't have said it better myself. I hate it when people look at me and say "poor thing" people shouldn't assume that someone who is different is unhappy every day I wake up and I am grateful to be alive in spite of the many challenges I face the fact that people would pity me is insulting.

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  3. I like it better the way I heard it -- "Thanks for giving so much love to me, I'm a lucky child." I didn't realize she was saying UNlucky until I read what you wrote. I think he's pretty lucky to have such a great family -- and they're lucky to have him -- a great kid!

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    1. This song would have been 100 percent better if you'd written it! I like what you heard. Aden deserves that positivity!

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  4. Brilliantly written, I couldn't agree more.

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    1. Appreciate your seeing brilliance through the grouchiness. :)

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  5. You may be a hypersensitive grouch, but I have no reason to be (i.e., no family members with CP)--and yet that video, well-intentioned as it undoubtedly was, gave me the creeps. Aden has some tougher challenges than Max--he's less mobile, and being unaffected cognitively (judging by the definition of CP at the end of the film), he's probably more aware of what he might be missing out on and how others might view him. But he deserves compassion, not pity.
    I think those are two very different feelings. Pity makes people go "awww...."; compassion motivates people to take Aden's special needs into consideration so he can participate in plain old every-day life.
    This video, to me, smacked of tragedy-porn, exploiting Aden's little-kid cuteness to tug at pity-prone heartstrings. Ugh.

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    1. It's interesting to hear this from someone who does not personally know people with CP, thanks for sharing. I think the footage of Aden in the video was so much more positive than the song. A Facebook friend suggested they just add in a different song; she suggested Pink's "So What?" Loved that!

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    2. Or Born This Way by Lady Gaga.

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  6. Ellen, You nailed this.

    I've been 'pounding the table' against this type of 'inpiration porn', which is generallly used to raise money from folks who know nothing about disability.

    The biggest problem is that Max - and anyone with a disability - must walk/roll around with this pathetic brand while they build their lives. It is the biggest challenge we face.

    Not only do I encourage you to continue this...whip out those brass knuckles. You are making an impact.

    Rich Donovan
    Dude (and dad) with CP

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    1. Brass knuckles have been on since Max arrived, pretty much. :) Funny, this didn't strike me as inspiration porn because I found it so DEPRESSING!

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  7. gag, just gag. I hate this stuff, you have caught me early with no coffee, so excuse me for being a witch but I get people all the time that stop and tell me how cute Zoe is in her pink sparkly power chair and next they applaud me for being .. what I am a parent. I am just another parent.. whatever people.... gag, just gag

    Now if only school administration could be so overly placating.. that would be awesome. Must.Have. Coffee.

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  8. by the way. .. thanks for putting out there what so many of us.. think! And thanks for making others accountable and thinking about what THEY say.

    Have a great day Ellen!

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    1. Always happy to speak my mind, especially when it comes to how the world sees Max & other kids like him.

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  9. Sure, children can look in his eyes and see his "dreams" but they can also try talking to him.

    That is my favorite line. Pity sets our kids apart even more. Focusing on the CAN'T, which are a real challenge, makes our kids less than. Yes, we need a celebratory song. Can we invite Katy Perry to do some sort of pop anthem to awesomeness of all kinds of different kids? Get on that, Ellen! (or is Katy Perry so five minutes ago?)

    Heather

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    1. Heather, Katy Perry would be brilliant on that! She is Sabrina's fave singer, so perhaps I will put her on that project. !

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  10. If it were not for the phrase unlucky child, I would like it. Nichole doesn't get why people sometimes pity her or feel sad for her and has instructed me to tell people she loves who she is and the friends she has. Her theory is you don't really miss what you never had and she loves the opportunities she gets to do many things she enjoys. I am blessed to be her mom, even with all the work her care entails, 24/7/365 with no respite. :-)

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    1. I so love "You don't really miss what you never had." She has a great attitude! You clearly raised her right.

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  11. Thank you for sharing this perspective. Despite the many joys and challenges (mostly with the system), I would never consider my 19 y/o with spastic quad. CP " unlucky". Quite the contrary, we are lucky to have him, and I am lucky to be in a profession to serve children and families. We need empathy not sympathy and pity.
    Dana
    http://ECEZero2Three.com

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  12. Thank you for this. Some of us really don't know what it is like for parents of children with special needs, to know how you'd want us to react. Now I know, and now I can use this to help educate others.

    We have a nephew with severe autism but we are not around him that much (his mom uses his autism as an excuse to keep him at home so he does not come to family functions anymore, which really sucks).

    We do have a friend with Down Syndrome, but we don't look at her as the friend with Down Syndrome, if that makes sense. She is just K. We know there are times she will squeeze you so hard that you cannot breath and there are times she will ignore you if you say hi, and that's fine. We treat her just the same as any other person, as do her awesome parents and pretty much everyone else we see interact with her (at church). She's not even my kid, but I became rather irate with a person came up to K and began talking to her in a high pitched voice like K was a little kid. She even crouched down and started stomping towards her much like we do to our two and four year olds when we want to start a game of chase. My word, K is NOT a 2 year old. She is in her 20s and while her mentality in some cases may be younger, she should be treated like the 20-something she is! It's no wonder K stayed hidden behind me, hugging on to me for dear life that day. She just wanted that person to go away!

    Sorry for the vent, but I thought it would be a good place to do it. Thanks again for pouring your heart out and stating exactly what you feel!

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    1. Stacey, is it possible your sister in law keeps your nephew home because that is what works for him...and trust me Autism is not an 'excuse'. Some kids have very serious sensory issues, especially in public situations. A little understanding goes a long way. Perhaps you can reach out to him and visit him in an environment in which he feels safe and calm. Just a thought.

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    2. I agree with Janis. We keep my son, who is pretty severely affected by autism, home from a lot of family functions and its not an excuse to say he has autism. He does have autism.

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    3. My last reply didn't make much sense. I am so upset with myself for not clarifying and possibly offending people. First of all, I know autism is not an excuse. I have seen how hard it is for people with autism. Our four year old has sensory processing disorder. He has autistic traits (but not enough to be on the spectrum) in a few areas, namely verbal and social. I see how hard it is for him, so I know it has to be a lot harder for our nephew, A. The deal is that when he is out and about, he does fairly well. A veteran friend of mine is in the scout troop that my nephew, his two younger brothers, and their dad (who is the assistant troop leader) are in. He tells me how much A comes out of his shell when he attends meetings. I have heard that A blossomed once he got into the right school, but his mom didn't like it, so she pulled him out. I have only been in this family seven years (A is almost 21), and remember when he came to family gatherings at our house, and he did okay. I just know for a fact that his mom wants to use any excuse possible not to associate with the family (not sure why), so she uses A as her excuse. Granted, it is possible that A has gotten worse over the past few years, but I don't know. Please do not think that I am not understanding or insensitive. I am not. I just stated facts, poorly I may add. Believe me, I am very, very sorry for what I wrote. Please forgive me for sounding like an insensitive jerk!

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    4. Stacey, I don't think you came off as insensitive, no apologies necessary! I love what you said about your friend with DS who is "just K."

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  13. I don't have a special needs child. I would be one of those whom you think pities your special needs child. And while I can't speak for everyone, I myself never pity the children. My sympathy is for the parents. Not because I think you are burdened by your child. Not because I think your child makes you sad. But because I know that when you decided to have a child, when you were picking out names and imagining your child's first steps and guessing what his/her first word might be, you didn't think about having a special needs child. You pictured your child able-bodied and healthy. Any parent who is denied that has my deepest sympathy. I myself am looking at starting a family in a couple years and I'm already planning the life I want for my child. No where in my picture is there a wheelchair or endless doctor visits. If I have a special needs child I would love him/her as much as I would a healthy child. But that doesn't mean that I wouldn't be allowed to grieve for the plans I made and the life I wanted my child to have. You get to grieve. And other people get to feel sympathetic (I refuse to say pity because pity is an ugly word full of self-superiority and condescension) towards mothers who've had to trade one view of motherhood for another. I'm sure your child is the light of your life. But can you honestly tell me that there wasn't a moment of devastation when the doctor first said the words "cerebral palsy?" You were allowed to have that moment. And other people are allowed to have their moments, too.

    That all being said, that song sounds just awful.

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    1. Anon, a lot of us do experience grief at some point; for me, it was strongest in the first year of Max's life. I've written a lot about that here. Sometimes I still get pangs of what-if. But I do NOT grieve for Max any longer, and as hard as it may be to imagine when you don't have a kid with special needs, I would not wish for another child. I do NOT consider myself an unlucky mother!

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    2. I wouldn't think you would feel unlucky. All I know is that it takes, I'm sure, a lot of readjusting and a lot of strength to parent a special needs child. I don't think any parent, regardless of their situation, wishes for a different child than the one they have. All I'm saying is that for some people, maybe that head tilt and "awww" has more to do with their own fears and experiences than with pitying your child.

      If you can find it, check out a song called "The Best That I Can" by an old kid's band called Rosenshontz. It's about special needs kids and it's marvelous.

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  14. Hi Ellen,
    I love what you had to say - I am a person with CP whose life is amazing - and always has been. My CP has shaped my life for sure, but defined it- NO - it has allowed me to meet so many amazing people that I would have never met. It has helped me understand acceptance and joy in some profound ways. Are there some days I would rather be a ballerina or a track star... sure - I bet that, or something like that, is true of typical folks too.
    I have always thought that kind of that kind of pity, when directed at me, is some weird way to feel superior to me.... fat chance.... I'm AWESOME!
    Sally Ross Brown

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    1. LOVE your words, Sally! Fat chance, indeed.

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  15. Ellen: One of my all-time favorite songs is "Now I Can" by the talented Jarrett Burns. He wrote it for the kids at Now I Can, the intensive physical therapy center that my son attends. This guys gets it.

    http://youtu.be/hy2Mm_IYYj4

    And yes, Bertrand makes a cameo in the video. :)

    Hopefully, this cleanses your musical palate. Nothing remotely close to pity in this one. :)

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    1. OK, that song is awesome, Cristina!!! The perfect antidote to this song. "There is so much more to me"—YES!!! Everyone, please go listen.

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  16. When I talked to my older daughter about what she thought of her little sister being in a wheelchair she thought for a moment and then said "E is so lucky to be in a wheelchair." I didn't expect that so I asked her why she is lucky and she said everyone is always giving her tickets to things like Disney on Ice and the Harlem Globetrotters and she gets to take the rest of the family along. So there you have it - many kids would call my child with moderate/severe CP lucky. Not unlucky.

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    1. Ha! Sabrina has said similar about Max. I think it's probably a common sentiment among sibs of kids with special needs. I think Max is lucky because he gets to eat endless amounts of mac 'n cheese and it doesn't go to HIS hips.

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  17. OK, Ellen, I have to confess that sometimes I think you're a little too touchy about other people's reactions to Max's disabilities or to their awkwardness. But this time you are right on the money. Aden and his family are very cool. The song is just awful!

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    1. Oh, I am the first to acknowledge I can be very sensitive about how people see Max... It's all because I ache for people to see HIM, not his special needs. I did wonder if I was overreacting here, but everyone else seems to have had the same reaction.

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  18. Personally, pity ranks right up there with "how do you do it?" and "what's wrong with her?" It makes me physically ill. Like you said, I know it comes from a good place, but recently I have seen these comments cause my daughter to doubt her happy existence. Wish people could see the 5 minutes after their thoughtful comment...sigh.

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    1. That's awful that people say that in front of your daughter. They should know better.

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  19. I personally think my Spiderman has MORE determination and drive than other kids BECAUSE of his issues. He's been through so much that it has begun to shape a raw determination to succeed that we never saw before his stroke. He doesn't see the pity stares, he seems oblivious to them most of the time. I asked the neuro psychologist after his stroke if the brain damage so obvious on his MRI had taken awareness from him and she said she believed so. This in many ways has been a gift. I never thought I would call it that, but it can be. We don't need the pity, an extra hand sometimes would be fab though...

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    1. Well said, Melissa!!! Max doesn't notice the pity stares, either. It's a double-edged sword, for me. I'm glad he doesn't, but I will be glad if he does someday have that awareness—and can respond himself to the pitiers!

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  20. This video is disgusting and makes me furious. I thought we were actually getting somewhere with educating people that nobody needs pity. Just because you can SEE my disability, I'm no less lucky than the next person. Thanks for speaking for all of us, Ellen!!

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    1. Now that you say that, Marcy, yes, it does seem SO retro.

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  21. I agree with so many of the things that have already been said, so I'll keep this brief. My daughter, Syona, has CP. And the people that know her best think of her as one of the strongest little champions they've ever met (as you say they see past the disabilities) and celebrate her achievements and all that she has overcome. No one in our family needs any pity sentiments...Syona included!

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    1. The people who really know Max— family, friends and teachers—treat him the same, Anchel. No pity there!

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  22. As an occupational therapy student and a babysitter of a different Max with CP, I couldn't have written a better post myself. In school I feel like we are getting somewhere on educating everyone to not pity those with disabilities but rather celebrate their successes and help them overcome their barriers to allow them to participate in their meaningful occupations. It upsets me that THAT is not the message getting out to the everyone! We are also taught not to fall into the trap of "he/she is such an inspiration!"... they are just doing the normal things they need to do in order to live, yes they may have some extra steps or a different way of accomplishing their goals, but to pity a person into inspiration is not helpful.

    on a separate note, there have been multiple times when I am out with the Max I babysit and we are sitting in a public place (say our favorite Dunkin after karate!) where I make him get up and throw away our garbage or stand and order our donuts, because I know he can and that he wants to! While it may take some extra time or he may need some stabilization help, he is doing it just fine. I don't appreciate the comments that "he is such a blessing" "good for him, trying so hard" "how cute he wants to help" or worse yet "why aren't you helping him??"

    It's time the general public and not just the OT's, PT's speech therapists, students etc and family and friends realize that having a disability does not warrant pity!!

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    1. Genna, thank you for doing what you do. There is clearly a long way to go in terms of opening people's minds.

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  23. Well, this song made me want to throw up. Enough said.

    - From one very LUCKY mama to a sweet, sweet lady with CP.

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    1. You're not alone in your reaction!

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  24. I think you tend to be very touchy about people's responses to Max and other children with special needs. Like another poster said, the emotion most people feel is compassion- not pity.

    Most people don't understand what it's like to have or know someone who has special needs. But in many of your posts, you discuss having to leave restaurants because Max has sensory overload, or of Sabrina feeling a difference between the way she is expected to behave vs. her brother. You question Max's future- will he be able to be independent? Hold a job? Fall in love, and be loved in return? For a lot of people who aren't familiar with these struggles on a daily basis, they seem startling and, yes, even cause for pity. No parent wants to hear that their child may not walk, may not talk, may never graduate college or have children of their own.

    I know you try to educate people on Max and his (dis)abilities, but this, like a few others of your posts, smacks of anger and defensiveness. The people in the video may have approached the boy the wrong way, but their intent seems to have been good. Give people the benefit of the doubt. Accept their compassion, and gently refuse their pity.

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    1. This is my blog (hello!), a place to share opinions, disappointment, concerns. Pity like the kind expressed in the song troubles me, as it clearly does other parents who have kids with special needs. It is sending a bad message to the world. And so, yep, I am going to air my grievances. I'm not sure why you think telling me how to feel or express my opinions—and doing it anonymously, no less—would have any measure of worth.

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    2. Anon the bit about how no parent wants to hear that their child may not walk, may not talk, may never graduate college or have children of their own is troubling. So what if your child doesnt go to college or have children- its NOT a big deal either.

      And I loved this bit- or a lot of people who aren't familiar with these struggles on a daily basis, they seem startling and, yes, even cause for pity. Yeah right. Pity is a dangerous useless emotion. It demeans those with extra needs. Makes them "lesser" people somehow.

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  25. Thank you for another great post! I know what you mean about the pity looks, it really bother's me because my daughter is just my child.

    All this negativity when used to describe people with special needs is so overwhelmingly frustrating.

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  26. I don't have a child with CP, but I do have two children with a genetic bone disease that is disabling. My youngest child is more severely affected than his older brother, and frequently needs to use a wheelchair to get around. I understand your "defensiveness". Just this week I got angry when I was at the gym and my little one needed to use the bathroom. I pointed out where it was and sent him on his way. He was using his chair that day. One of the employees looked horrified that I'd send him by himself. He'll be 11 years old in a week. He's perfectly capable of going to the bathroom by himself. Instead of letting the guy know I was angry, I smiled sweetly and told him that independence was a good thing.

    I completely agree with you about this song. It might be well intended, but you know where the road paved with good intentions leads.

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    1. I try not to let my disappointment/frustration show. Usually, when someone says "awwww" I'll say, "Don't feel bad! Max is an awesome kid." If I catch them staring, I'll say "This is Max, would you like to say hi?" or I'll tell Max, "Hey, they look like they want to say hi, tell them your name!"

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  27. Argh, to be honest I only made it two minutes into the video-I just couldn't watch. It was like a bad accident. And yes, I do have a 4 year old with cerebral palsy and the only thing unlucky about her life is that she was unfortunate to have a nurse working the night I delivered that apparently slept through fetal monitoring training. But at 4 she is well traveled, loved fiercely and fed very well. To me, an unlucky child is one that doesn't even know what it means to be loved, to have a support network, to have a hug when they get off the school bus, to have a meal on the table at the end of the day. It appeared to me that the child in the video had all of that-darn lucky. She's a songwriter, she should know that-'all you need is love'.

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  28. The video focused on what he can't do rather that what he can do. I can't run a mile in 9 minutes, but I can play the flute. My LVYO audition is in 2 days. I'm so excited.

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  29. This is sort of the same topic, but the flipside of it: it's really, really positive. All the children in this video, to the song "We're Going to be Friends," are deaf. And it paints them in a great light. Thought you might enjoy it!
    https://www.youtube.com/watch?v=IbLz9-riRGM

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  30. Don't pity me, pity the unlucky child,
    Whose parents left to run wild.
    Leaving the child sad and alone,
    Never knowing a stable home.

    Or pity the child who was never taught,
    Before being a bully, give it a thought.
    Pity the child that hasn't any choices,
    Not the loved ones... That sometimes just lack voices :)

    My poetic rewrite!

    Boog's Mom

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  31. The four needs to live are food,water, shelter, and an atmosphere.
    The four needs to thrive are food, water, shelter, an atmosphere, and love.


    Aden is obviously loved.








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  32. First, I personally would like to take this opportunity on your blog to apologize to every child and or parent that I ever offended because I have always felt compassion or as I now realize understood as pity for children with special needs.I also felt it took as special person to raise and/or teach children with special needs or disabilities.
    Until here recently, I at the age of 42 have never been around children with disabilities. And, you are absolutely correct. There is not enough education out there for us parents that do not experience this.
    I put my 3 year old daughter into a camp to get her around other children and prepare her for pre-k. I didn't realize at the time that the majority of the children attending this school/camp were kids that have special needs. Guess what? My daughter still doesn't know that. I hope she never does. I am thankful to God that he put us where he did so my daughter has this experience and now and will be educated. Her two best friends are precious little boys that love her as much as she loves them. the joy in all their faces in the mornings are priceless. They teach her as much as she teaches them.These children are no different then my own. Sadly, it took 3 & 5 year olds to slap me in the face and open my eyes. All of these children love, learn, have abilities, have wants and needs, are good and misbehave, have dreams and have the desire to achieve it all. This is because we are parents that love, care, support and are active in our children's lives. Wow, we are the same too...
    I just wanted to share this because I only found this blog because of our children and I was looking for a sight that would help me understand. All of our children are blessings and I am lucky to be able to start my mornings off with many hugs and smiles and they are all so sincere.
    By the way, my daughter will be staying in this school through pre-k. I would never think about taking her from her friends now.
    Again, I do apologize from them bottom of my heart. I still have a lot to learn and I think getting more involved myself would be a great start.
    Thank you for your blog and for helping me understand your views along with many others. I had no idea.

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Thanks for sharing!



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