Tuesday, December 29, 2009

Special Needs Kids Aren't "Broken"

 
A few years ago, I saw a parent use the word "broken" to describe their special needs child. It was the first time I'd heard the term used that way and my reaction was strong. My ass was decidedly chapped. At the time I was writing a lot about vaccines. Railing against the government, big pharma, clueless dentists filling little teeth with mercury laden fillings. Even still, something about the term "broken" used in reference to a child, rubbed me the wrong way. "Hey kid, you're damaged goods," it seemed to say. What a horrible message to send.
 
Annoyingly, I had just enough self-awareness to know perception is a mirror, and if something another person said bothered me that much, I'd better look in my own yard before attempting to clean up theirs. It forced me to delve deeply into how I was viewing my own child who is diagnosed with Asperger's. It caused me to face my own victim mentality,the one I'd been steeped in since childhood. The one I had dragged with me into parenthood. Today, I'm appreciative for having had the opportunity to clean that up.  
 
I still believe environmental factors (especially vaccines) cause autism in genetically susceptible kids. What I also believe now, that I didn't before, is children with autism and other disabilities are more, not less. Their lives are meaningful. They may not be able to do all the things "typical" people do, but on another level they are doing much more than they might have done, had they not been born (or thrust) into these conditions. They are not second class versions of their "real" or better selves. They are powerful souls. They are here in droves, changing the world as we know it. One family at a time. One interaction at a time. One heart searching moment at a time. They are teachers of unconditional love, requiring us to accept them, or be miserable. They shine lights on unhealed parts of us, and forgive us over and over as we fumble through, trying to parent them well.   
 
We continue to provide therapies and supplements in an effort to help our child meet her needs and be the healthiest she can be. We will always do what we can to help her, but we're no longer trying to fix her. 
 
None of us has the whole picture yet. 
 
The term "broken" continues to float around a bit in special needs circles. It peaks my curiosity, but no longer stings.
 
At best it is an attempt at conveying the struggle and challenges a special needs child faces. In no way do I dismiss those challenges. Our family faces plenty of challenges, but some children and parents deal with more than I can ever imagine and I mean no disrespect. At worst, however, the use of the term "broken" in reference to a child with special needs is a publicity stunt aimed toward offending.
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Somewhere in the middle is the argument, "That's how the world sees them. That's what we're dealing with." 
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Nope. Still not buying it. 
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"Broken" does not describe my kid.
Forgive me, but I will never see your child as damaged goods either.  

 

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Michelle O’Neil has contributed to A Cup of Comfort for Parents of Children with Autism,and Special Gifts: Women Writers on the Heartache, the Happiness and the Hope of Raising a Special Needs Child. She has written for Literary Mama, The Imperfect ParentAge of Autism, Cool Cleveland and her blogs about her daughter's service dog have recently appeared on The Bark.com. She writes about family, spirituality, Asperger's, service dogs, and the law of attraction at www.fullsoulahead.com.

 

31 comments:

  1. Ahg! You nailed me again. Dragging the childhood victim role into my adult life? Absolutely. I did think my kids were broken. In a way, there is something anatomically broken in Reilly - he's missing a big chunk of his brain. But - BUTT! - I'm coming around. He's no less whole. Most days, I get that.
    What keeps me in the here and now is the thought that either of the boys would ever think I thought they were anything less than whole. That's just unacceptable.
    They are who they are for a reason. We all are, no?

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  2. They are here in droves, changing the world as we know it. One family at a time. One interaction at a time. One heart searching moment at a time.
    AMEN.

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  3. I dont' like the word broken either. However, I will argue until I'm blue in the face that my kiddo is ill/injured. Illness/injury does not equal broken, but illness /injury is something that can be healed. I am in the unique positiion of having seen my child regress, after he was speaking in sentences, to the point that he couldn't even get out one syllable. He didn't regress until after his third birthday, which puts him outside the window for an autism diagnosis. I believe down to the ends of my toes, that he didn't regress until then because I didn't start his vaccines until he turned 2, and i only permitted one at a time with a month in between. I believe that had we followed the CDC's schedule, he would've never developed, and we wouldn't see "illness/injury" we would see "different"

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  4. I like to let people deal with their issues in their own ways, with their own terminology. We ask that society embrace/understand/accept our children's differences. Well, we should embrace/understand/accept *everyone's* differences.

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  5. I definitely went through this phase of thinking my son was "broken" - in fact, I thought that of myself too when I was going through all the grief. I think that the concept of being broken is driven by us parents struggling to come to terms with the drastic change in plans in our lives..."Wow, THIS is not the course we meant to take in life, and it looks so different from everyone else, so it must be ________" (insert negative word here).
    So, for me, the concept of my child being "broken" was a phase. But the trick is not to remain there. There was so much better ahead when I pushed through it.

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  6. Robert Rummel-HudsonDecember 29, 2009 at 10:59 AM

    I think it's important to remember that the special needs community isn't monolithic. As our kids are all different, so are our approaches to their situations and the terminology and methodology that we all use to dal with the circumstances in which we find ourselves. I understand what you're saying, but as someone who has used the term "broken" to describe my daughter, I see it differently. And the thing is, that's fine. No one has The Way. We all just have Our Ways.
    Some people preach the idea of acceptance as the key, and for some people, that's exactly right. For others like myself, acceptance would have meant selling my child short and never knowing exactly what was possible for her to achieve. Some people embrace People First Language; others (like me) find it to be offensive in its own way. For some people, Holland is an inspiration; for others, a cruel joke.
    And broken things are things that can become whole again.
    Not every family sees things the same way. I'm glad that you've found your own way. I hope you won't begrudge me and others like me (and as you've noted, there are many of us) who are finding our own, different way.
    (I just remembered that I've written about this before. "Pragmatic Monsters" - August 2007)

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  7. I agree with Robert that the special needs community is hardly monolithic. And the word "broken" isn't victim terminology to me -- it actually quite describes the brain my daughter has, a brain that has seized uncontrollably for much of her fifteen years. A brain that seizes uncontrollably for fifteen years is something that should and needs to be "fixed" in the sense that she might live without pain and discomfort, even live at all. I will work for as long as I can to help with this and while I "accept" her for who she is and what she is and who she might become, and I love her unconditionally, I don't accept that the way her brain works is somehow the way things should be. I actually have always admired the term "broken" in its breathtaking honesty. In a spiritual sense, I have felt that only by acknowledging broken-ness, in myself and in my daughter, in our family, in the medical community, in the special needs community, can one be in a position to know humanity in general.

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  8. Jess said what I was going to say, so ditto, Jess! I would argue that they change more than one family at a time, they change whole communities at a time, and with the Internet, they change large circles at a time. Praise be to the Internet!

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  9. You definitely lose a LOT of credibility by saying vaccines have anything to do with autism. They don't.

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  10. Something "piques" your curiosity, not "peaks" it. If you're going to criticize others' language usage, you should be sure your own is free of bush-league errors.

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  11. You're wrong Amy and obviously clueless. There's plenty of evidence showing that vaccines have MUCH to do with the cause of autism. Only the truly ignorant fail to see that,.

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  12. @MC... oy. Good luck with that.

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  13. Vaccines have nothing to do with autism. That's absurd.

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  14. Right Trisha. You keep thinking that. Blind and clueless.

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  15. Hey Amy and Trisha why don't you educate yourselves a bit instead of insulting those who truly do research the facts. In some children vaccines and the ingredients in them (e.g. aluminum, formaldehyde, etc.) can be very harmful and most likkely contribute to autism. You both are rude, obnoxious assholes.

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  16. @Go away trolls.... I have a biology minor, and have researched autism with many physicians. But thanks for your ignorant assumption.

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  17. Really Amy, I would consider you the most narrow minded of all. I feel for any kids you may have.

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  18. Or, ya know, you could arm yourself with the facts, rather than panicky fear and misinformation. It's fascinating how when two people (and now 3 - count me among them) dare to say that there's no causal vaccine-autism connection, they are called "blind", "clueless", "rude", "obnoxious", and "assholes", when they've been none of those things. They've simply stated something you disagree with. Do you think that kind of reaction supports your stance? It's that kind of knee-jerk response that will keep you in the dark, unfortunately.
    http://www.wired.com/magazine/2009/10/ff_waronscience/all/1

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  19. Thanks, Another Amy. I venture to guess a lot of these Jenny McCarthy-ites also believe in Creationism, too.

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  20. or, if you're too lazy to read the article (or too scared of having your beliefs challenged by SCIENCE and FACTS), consider:
    "Looking back over human history, rationality has been the anomaly. Being rational takes work, education, and a sober determination to avoid making hasty inferences, even when they appear to make perfect sense. Much like infectious diseases themselves — beaten back by decades of effort to vaccinate the populace — the irrational lingers just below the surface, waiting for us to let down our guard."

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  21. No pankicky fear here Amy. Vaccine reactions are not uncommon and I have seen my child regress after them. Choose to think what you want and I will choose to believe what I want. Good God. Remind me not to come to here to read about those with their heads stuck in the sand (not you Michelle). I'll stick with AOA.

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  22. @MC, I am sorry your child was born with autism.

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  23. You know Amy, Trolls like you should be prevented from commenting.. You contribute ZERO!

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  24. My child wasn't born with autism Amy. She regressed after several vaccines in one day. Go fuck yourself.

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  25. Just because I base my opinions on scientific fact, I'm a troll? Most experts in the medical community believe that children are born autistic. So, um, whatever.

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  26. Even if your child is "broken," I don't think that's a term a child should SEE in reference to him/herself. Especially by a parent. No child wants to see that and if you think that they don't mind because they're smart enough to know they are broken, then I think you are fooling yourself because YOU like using that word and nothing more.
    I would never want my parents to think of me as "broken" even if I was, especially if I was smart enough to know the difference.. I would want my parents to think of me as their child, not as their broken child. Broken is just another label, and I'm certain your child would not want his/her parent to be assigning him/her negative labels when that's what the rest of the world does. A parent should be different.

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  27. oh my! i'm so thrown by how the comments deteriorated into vitriol!
    listen--we ask our kids to work so hard to handle disregulation in a safe and respectful way. i think we ought to be better examples. if we can't, log off and find somewhere else to vent.
    michelle's writing is all about respect and love.
    thank you, michelle. sending xxx

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  28. Wow, nice to see that the grown-ups came out to play. While I am sure the original author loves the turn that this comment war has generated, aren't there other places where the Great Vaccine Debate can go on, where you can all call each other names and be throughly distrespectful too each other? It is amazing to me how people who should be supportive of each other cannot have a difference of opinion and respectful debate, and must instead feel some overwhelming need to push their ideas down others throats, when clearly no one is willing to even listen or re-examine their beliefs.

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  29. Interesting to see that, among you vaccine blamers, saying that someone's child was born with autism is an insult or a patronising comment.
    My child *was* born with autism, so fuck you both, Amy and MC.
    No, just kidding. But all of you should stop judging each other and trying to arrange yourselves in these sad fake hierarchies, seriously.

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  30. Michelle, I love that you took the challenge of the word "broken" as a spur to look into your own biases about the word. It is only by healing ourselves that we can become truly effective in the efforts to help our children be what they can be.
    Love.

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