Wednesday, June 6, 2012

My child with special needs is not a burden to society


I recently got into a conversation with an acquaintance about the cost of caring for kids with special needs. This is a smart, savvy woman who has a son with mild Aspergers, and who knows that I have a child with more significant special needs. I mentioned a study that found treating people with autism in the United States cost $126 billion last year.

This woman proceeded to tell me that something has to be done in this country because there is only so much money to go around. Her take: If there are 10 kids with mild autism and one with profound autism, the money should go toward helping the 10 kids because they would be "better candidates for contributing to society."

I was shocked, but kept my voice steady. "That kid on the severe end of the spectrum deserves help as much as the kids on the mild end do—and we should find some way to help them all," I told her. I don't think that's idealistic; I think that's the decent thing to do.

A woman listening to us talk—another smart person I respect—chimed in, kindly, “I don’t think you can be rational about this.”

She was right: As a mom to a child with cerebral palsy who's affected both physically and cognitively by the condition, I couldn't be objective. The question is, why isn't it a given in society that all kids deserve the chance to reach their potential? I wasn't angered by the conversation; I was dejected, because I knew the woman was voicing thoughts that many, many people have.

Since having a kid with special needs, I've become acutely aware of how some people view them. Often, strangers stare at my son through pity goggles, unable to see past his disabilities. On occasion, I've seen raw nastiness come out online. What really takes me aback, though, is intolerance coming from good, sophisticated people, this thinking that people with special needs are somehow lesser human beings, people who don't deserve the extra resources it can take to help them achieve. Burdens, even, as a recent Newsweek article on the special-needs care-crisis mentioned: "Many of the medical advances that have improved the lives of special-needs individuals have also increased the burden of caring for them."

Burden? My child? Expensive, yes. Demanding, yes. Emotionally draining at times, yes. "Deadweight/encumbrance/misfortune" (all synonyms for "burden"): NO.

Max is nine. Like any kid, he has his unique charms and talents. He lights up rooms with his smile, and inspires friends and family with his determination to overcome the challenges of CP. More than once people have told tell me that he's influenced them to power through when they've faced obstacles. Sometimes, I hear from students studying to be speech therapists who say Max has made them more revved than ever to go into the field. His spirit has transformed my soul.

The words "cerebral palsy" or "autism" or "Down syndrome" tell you nothing about a person's abilities or potential. To view kids or adults with special needs as people inadequately capable of contributing to society is flat-out prejudiced.

No matter what the future may hold, my son is a person of worth—significant worth, in fact.

My son with special needs is as worthy as President Obama.
He is as worthy as...
Bill Gates
Warren Buffet
Derek Jeter
Bruce Springsteen
Steven Spielberg
Mark Zuckerberg
Donald Trump (and he has better hair!)

Should you argue that these are men who contribute more to the world than my son ever will, well then I say that's an incredibly narrow-minded way of looking at life. Who knows what Max is capable of? Who are any of us to judge his worth?

No person's merit (let alone a child's) should be determined by the way his muscles move, how his brain works or whether he speaks in the way that people typically speak or looks the way people typically look.

My son has made a difference in this world and will continue to do so, in his own way.

My son is full of promise.

This, I hope you can understand.

106 comments:

  1. I know 100% what you are talking about but try to have pity on these people. I can say that now because, before having my daughter, Tess, I was one of them. It is my greatest shame and I carry it with me all the time. Of course, now that it has directly impacted my life, I understand how ignorant and shallow I once was. Now I know that it isn't kids like ours who are a "burden" to society, it's the people who don't know better. All we can do is keep trying to make people understand how much our kids positively impact every life they touch. Not many people can say that. But we can. :)

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  2. That whole conversation (especially the condescending "you can't be rational") reminds me of all the national chatter after a girl was denied a life-saving transplant at CHoP. People I truly considered to be "on our side" couldn't get their heads around why someone with an ID deserved to live as much as any of her peers.

    They'd qualify their remarks with, "I'm not saying they should be put to death or anything, sheesh."

    OK, but yes you are.

    They seemed to grasp it better when I asked if all life-saving transplants should be reserved for people who have completed post-graduate studies, or really made a mark in their careers, or performed 2000 hours of volunteer service. That shuts 'em up pretty quickly.

    It's a tough road, figuring out who among these friends is educable on the matter and who is going to dig in their heels and just never, ever get it.

    Once they've clearly slid into the latter category, I no longer waste my time. We've got important things to do, like proving them wrong.

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  3. "...the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life; the sick, the needy and the handicapped. " ~ Last Speech of Hubert H. Humphrey

    What we need to do as human beings is to not judge or decide who is valuable and who isn't. If an issue doesn't effect you directly that doesn't make it not important. I'm all for civil rights for gays despite not being gay because I understand the need for equality. For some reason, that equation doesn't translate to the disability community unless it affects your family directly. How sad.

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  4. Beautifully put, as usual.

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  5. I recently had a conversation with a mother of a child in my daughter's school. She had only just discovered that the school had an integrated class and that this meant there were special needs children in the school (Oh the horror!). She actually said that she didn't think we should have "those children" in our school because they would bring down the school's test scores. She was unaware that my daughter is one of "those children." I pointed out that, test scores aside, typical children in an integrated class often learn values like empathy, compassion, tolerance, being helpful, etc. She wasn't buying the merit of these values. I decided she was beyond hope and cheerfully pointed out to her that since you almost never hear of a special needs child becoming a serial killer she could take heart that by having "those children" in the school it would lower the chance that our school would be the home of the next John Wayne Gacey. Then I walked away because I knew my head was about to burst into flames. Some people will just never get it no matter how hard parents of special needs children try to educate them. And that is a very sad reflection on our society.

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    2. It is not a sad reflection on society, it is a shocking reflection of her priorities, Anne. That child's mum cares more about pointless test results which are NEVER important. When I visited schools, I always told the Head that I didnt care about test results, I cared about how they planned to teach important values like empathy, compassion and tolerance to the pupils.

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  6. AMEN!! My beautiful T-man is not a burden, a challenge, yes, but never a burden. and he adds so much to my life and others' lives.
    thank you Ellen, beautifully said!
    Kristen

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  7. Agree with Lia. Should we reserve all the resources for only those kids/people that are going to go to graduate school and win a nobel prize? How would SHE feel if someone said that money would be better spent on those who are already doing well at school so that they can do even better. Even a mildly affected SN child will never match up to that!! How about we preselect kids for intelligence and looks and wait a minute - I think that is what Hitler tried to do. All human beings are created equal and deserve a chance at life, happiness and the pursuit of it ..... hmmmm .....where have I heard that one before? Thanks for writing about this Ellen - as usual you did a wonderful job.

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  8. I wonder how that first mother would have felt if it were HER son with the very severe autism - the one that she feels doesn't deserve treatment?

    But then again, I guess I'm just not capable of thinking of this rationally.

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  9. Wow. Amazing what people think and say.
    I love Max! He is a great boy!
    People find it easy to put things in a box if they know nothing about it. Sorry you have to hear these kinds of remarks.
    We are preparing to adopt a little girl with CP and hearing loss, and I come to your blog to prepare myself for what is to come. She will hopefully be home within the next year.
    Thanks for sharing...

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  10. Beautifully said. (And I'm filing away the comment by Anne about serial killers so I can use it the next time I am talking to one of "those" parents who think our children should be kept away from theirs. *sigh*)

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  11. You are singing my song! My daughter Allison was born with Emanul Syndrome. She
    And her fellow "Chromies" are teaching the medical community about compassion, listening to parents and the importance of advocacy for people who cannot speak for themselves. She has taught other students at her school not to give up. When you finally learn to walk at the age of 12, you help others become inspired to do more! I have two nieces that are pursuing professions in which they will be working with children with medical and developmental issues.
    Our society needs folks like Max and Allison to help them reach outside of the narrow-minded thinking of what contributing really is!
    Thank you for educating and speaking up for all of our kids!

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  12. AMEN TO THAT!

    I gave a presentation to medical/research students recently and I had to admit how WRONG/misguided my own attitudes were about disability before I had my son.

    Somehow I had bought into that idea that is so predominant in our culture that disability somehow "reduces" a person.

    I had to explain how a human being is
    so much bigger than a diagnosis and how a medical definition could never capture someone's spirit, essence, presence.

    You may like the musings of a wonderful young woman with cerebral palsy who has pretty profound insights about growing up with disability in this world that values normalcy:

    http://bloom-parentingkidswithdisabilities.blogspot.ca/2012/05/life-according-to-crystal.html

    "What are our values? Where do they come from? Why do we think the way we do? I can take the alphabet, and make it into words, and take the words and put them into sentences, and the sentences into paragraphs and the paragraphs into pages. Good for me. What about people who will never be able to do that for different reasons? What happens to them? Why does society deem them as persons of less value? Everyone has rights, no matter what their capacity. But the way the system is set up, if the person can't advocate for themselves, they don't have access to their rights. It’s not a question of medicine. It’s a question of what we value."

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  13. Amen I find it bad that we are still fighting this fight in 2012 Will America EVER CHANGE

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    1. To AZ

      Will America ever change?

      First of all, attitudes are changing. I can tell you that straight off. Last weekend while me and Noah were at a library in Cincinnati Ohio, people moved when they saw his wheelchair. That proves my point which is this. When we are trying to accomplish a huge thing, we need to remember the small victories. And changing attitudes is a tall order not a small feat. Your questions arent useful and emotionally draining. They drain energy out of people such as lawyers who work so hard to help people with disabilities. So be careful about what you say in the future, AZ.


      P.S are you lot too busy that you couldnt scold her. You talk about other people but let me tell you that you are not superheroes. No you cant even spend five minutes scolding her? How sad and proves my point you are humans with flaws that can beings

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  14. Right on, Ellen! The same arguments are being made against providing life-support for micro preemies like my son, Jack. We hear buzz words like "quality of life" and "burden" all the time... providing healthcare for those who need it most, well, it boggles my mind that so-called intelligent adults can think this way.

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  15. Love this post! You said what so many of us moms feel on a daily basis. I just wrote something this morning about how we tend to get comments and unhappy responses from those who feel that my son with special needs doesn't have the same rights to pursue outdoor activities like everyone else. Sadly, the more he is active outdoors, the more people tend to view him as a "burden." I am hoping to help change the minds of all those we meet :)

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  16. I worked a a Pedi nursing home starting back in 1989. You echoed my thoughts LOONG before I had my own 4 kids.

    IHave 2 kids with dysgraphia, dyslexia and visual processing disorder..( my younger of those 2 has also audio processing disorder as well).

    It never fails to amaze me from day one how people have said that we are waisting money on kids. Really. did you know that you listed adults that have been successful with special issues. Bill gates is one. Steven Spielberg is another..

    People just do not stop to think that these kids have soo much to offer us in the world. The kids I worked with in the pedi nursing home taught me more about life and unconditional love than any school or anything else could have.

    You rocked this issue thank you

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  17. You can't be rational????? Excuse me??????? That's no "friend" Ellen--that's someone who would be right at home directing traffic in a concentration camp. Do these "friends" of yours realize how they sound? How creepy. Why not just come out and say "We're for EUGENICS!" And while we're at it, if your "friends" have big asses or lousy hair or an "ugly" eye color or the "wrong color" skin, or pimples, or maybe they have irritating voices, let's cut them off at the pass, too--sterilize 'em, so they don't reproduce, because we certainly don't want any of "their kind" around here! I'm disgusted at those "friends" Ellen--I don't have many friends but I am so happy I don't have a one who would talk to me that way. I say you really need to just dump those bitches and move ahead smartly free of some vicious deadweight. Nasty ass meanies! Max is worth more than a hundred of those fools! They should be ashamed!

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  18. Oh man! Right there with you! Unbelievable how inconsiderate some people can be!

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  19. All people are valuable. All children are worthy. Is it really so hard to understand that we are all connected, that even the child who will only ever have the most limited ability to express themselves has an impact on every life that they come into contact with, every person who knows them, and that this is a good thing? The baby who never makes it out of the NICU, the profoundly damaged and affected little person who needs a great deal of assistance to reach whatever potential they have, the child who disrupts and disturbs these oh so sensitive people and perhaps reminds them of their own limitations or imperfections, the adult who still needs supervision and assistance and will for all their lives, these are still worthwhile lives. They still have an effect on the world. They are all valuable, and their lives should be cherished. My husband, a special needs teacher, had a student in his program pass away during a seizure at home. This child was profoundly autistic, with several co-morbid conditions and would likely never have lived independently. Yet, he will be sorely missed, has touched the lives of everyone he met, was a treasured human being. As we all are, or should be. Your Max matters. He matters as much as any of the geniuses or humanitarians, or any ordinary folk. Everyone has the potential to do, inspire or motivate. We all matter. We all have value. We all deserve to get the assistance we need to reach our potential.

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  20. This made me sad. Sad that there are so many people out there that view themselves, or their kids, better than another human being. Then I reminded myself that I know a God who loves everyone and to him EVERY life is PRECIOUS!

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  21. SO true! They are perfect just the way they are!

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  22. Yes! Everyone has value and deserves adequate care and services. Who determines what contributions to society are most valuable? Even suggesting making such judgements is appalling to me. I also think the woman who told you that you couldn't be objective is way off base. Who better to know the amazing gift that a child with special needs can bring to those around them than a loving Mama.

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  23. No matter what the future may hold, a child/person with special needs, is a person of worth, significant worth, in fact.

    Dear Ellen, Hope ou dont mind !! I made some minor modifications ( gender of verb) to your post so that I could repost on my wall. Lovesd what you SAID

    A person with special needs is as worthy as President Obama.
    They are as worthy as
    Bill Gates
    Warren Buffet
    Donald Trump (and he has better hair!)
    Derek Jeter
    Bruce Springsteen
    Steven Spielberg
    Mark Zuckerberg
    And even, gasp, Justin Bieber.

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  24. I would like to hug you right now. You took the words right out of my heart!

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  25. As someone who does not have a special needs child I have only one response.

    Stephen Hawking

    Yes, he became special needs as a young adult but that doesn't change how very much would be missing from the world without his contributions. Who is to say exactly what important contributions will be made by someone with special needs?

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  26. You have me CRYING at my desk at work, again. I <3 you.

    And this is why on something like Facebook, we have not announced my G's "disability". I want people to meet G, meet his SMILE, his personality, THEN his PDD-NOS.

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  27. Several of the men you mentioned themselves have special needs - just showing how much you can never tell in advance what impact a child will have on the world.

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  28. Fantastic reponse! I'm mother of a kid with special needs and i know what you talk about!
    Baci from Italy
    Barbara

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  29. AMEN! My sweet boy just turned three and his autism therapy shifted from in-home services to the big, wide world of public school. Our town recently "found" $90,000 to audit (!!!) the special education departments here because this group of students isn't performing "up to par" on the State's standardized tests. (Think about that one for a minute - THAT's the State's measurement of success for this group of kids.) The newspaper articles and the subsequent online comments about this took my breath away. How dare these kids have a 2:1 ratio for kids:teachers! These programs are what's draining the rest of the school's resources -- and the extended school year teachers are glorified babysitters who get paid a ridiculous amount of money every day! If they sat for one hour in that classroom and saw what miracles these teachers pull off with as few resources as other teachers, they'd hush up. My son deserves -- and is guaranteed -- a free and equal education to those of his neurotypical peers. The funding shouldn't be tipped to benefit someone that is subjectively deemed to be "a better candidate for contributing to society." If we used that rationale, it would become anarchy in all levels of school administration. My son is brilliant, adorable, clever, talented. Yes, it takes many more resources for that to be evident but he is equally deserving as any other child -- neurotypical or not.

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  30. I found this blog through a friend's Facebook posting, and I would like to comment on something in the post.

    I would like to suggest that not being "objective" is not the same thing as not being "rational."

    You can be rational from the particular subject position of someone who has a highly informed perspective on the cost-benefit analysis: what the costs and benefits really are, and what lies beyond the ability of such an analysis to grasp or comprehend.

    Someone else might be rational from the perspective of knowing absolutely nothing about the real costs and real potential of children and adults with disabilities, chronic illnesses, etc, except what can be gleaned from mass media.

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  31. How indignant! My son is also a high functioning aspie and I would never in a million years think he deserves more resources than any other kid with special needs just because he supposedly has more potential. Who are we to judge? How frustrating that people that are supposed to get it think this way. Thanks for voicing your opinion on this very important matter, and thanks for sharing your thought provoking ideas, I'm a big fan of your blog!

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  32. Thank you so much for writing about this! As the teacher of students with more profound disabilities, I see and hear this discrimination happen, daily! Our students get left over materials, left out of school-wide activities and the scraps when it comes to scheduling, facilities and resources. I hear from administrators that their attentions and resources need to be focused on students who "take the state test", when I protest and advocate. Please know that not everyone in society feels the way that these moms and administrators. Thank you for being a voice for these children. <3

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  33. The sad thing is this attitude from others makes parents with special needs children feel guilty to ask for the services that are federal law. I did that for years. I have a new perspective. I am my child's first and most passionate advocate and it is my RESPONSIBILITY to make sure she gets the benefits that are legally hers, not mine, hers!

    When people tell me people with special needs are a burden, I tell them, when we stop giving benefits to able-bodies people what can work for a living, when we stop sending billions to make sure criminals get fair and human treatment, when we stop waisting billions in fraud, I might feel bad about the money spent on children with special needs, which is pennies on the dollar spent on other social services.

    A society is measured by how it treats the individuals that need the most help. They add tremendous value by just existing and appreciating all the things "typical" people take for granted.

    Thank you for bringing light on this discussion!

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  34. I'm a mom of three girls, the oldest having Asperger's. I would never think that any of them would be more "deserving" of ANYTHING than ANY human being (except maybe myself, but that's a mom thing!). That mom's values are in the toilet. Sorry, that really angered me to hear it. And I've heard it before.

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  35. Ok, so I get that people shouldn't be mean to, look, down on, or deny medical procedures to people with special needs, but why do you get upset when average people think that extra special care should be paid to their kids, and not yours just because yours is identified as special needs? That's a double standard, and it makes you a hypocrit. I don't begrudge you anything you think you need, but why do you give a crap when other people say they are upset that your kid gets special treatment, because frankly, they are getting special treatment. Stop taking it personally, and please do look at it rationally. Government assistance is there to help people with conditions that prevent them from functioning in society without extra help, but it doesn't provide any extra help to the brightest who will go on to make the most pivotal discoveries that could have the most benefit on our society and economy and culture, and lives. Maybe one of those best and brightest could discover a cure for CP or autism, but won't without a little extra education or opportunity, but they don't get it, because we are spending the money on teaching life skills. I'm not saying that life skills aren't important, I do support extra help for those that need it. I am just saying they are not the only ones that need it, and maybe one day a brilliant neurologist will cure your kid's disease, and wouldn't THAT be better than having him learn to use a debit card? (except that he'll never become a brilliant neurologist, he'll be a fantastic bank teller because he didn't have the opportunities to reach HIS full potential.)

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  36. I am so glad I saw your article on AOL, and that I found your blog!
    I teach high school students who have significant needs. They are in wheelchairs, have feeding tubes, do not speak, cannot write, demonstrate math facts or read.
    And each of them has talents and skills.
    They are loving, funny, artsy, musical, curious, open, kind and brave - so brave - qualities that so many of their "non-disabled" peers often lack. My students CONTRIBUTE to our school community, and to society, in so many ways: they teach us the value of every life - they teach their peers the importance of being sensitive and accepting and loving toward ALL others - they give us the courage to face the challenges that come our way. They teach us to persevere. They teach us to laugh, that it's ok to cry, and they help us know real JOY. Shockingly, I have actually conversed with people who ask how is it that these students are "allowed" to attend school, given the incredible support they require, and their "lack of response" to education. To them I say, spend a couple of hours with me in their world. Those who accept my invitation leave my classroom in awe, somewhat ashamed, and always grateful - and graced by the CONTRIBUTIONS that my students have made to changing these visitors lives. To me, this is the Civil Rights issue of our time. THANK YOU for giving our kids a more public voice. Keep up the great work, beautiful Max - keep kickin' butt ..........
    and, you, too, Mom!

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  37. Amen the people with judgemental attitudes are burdens the people who need help just need universal access & accommodations & friendship & understanding. People need to learn to respect that.

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  38. Fastidious: Yes
    Impatient: Yes
    Lack of communication skills: Yes
    Burden: No
    Curse: Never

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    1. Anon I have to politely disagree with this idea lack of communication skills. A lack of communication skills is actually very RARE. Even people who are nonverbal can still communicate. However, I agree disabled people are NOT a burden.

      A society is measured by how well they treat the most vulnerable people not the other way around.

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  39. I was profoundly moved by a picture I saw in the US Holocaust Museum of a little girl in Nazi Germany being prepared for a lethal injection because she had a disability. She looked very much like my daughter Hannah, who was in the process of receiving significant services to help her in school. Expensive? Yes. Bit I'd rather live in a society where we value everyone. I wrote about this in "A Meaningful Life. " www.causegood.blogspot.com
    I think you will relate.

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  40. Sorry - I posted that last comment, but don't know why my I.D. came up as "Unknown." Wasn't trying to make an anonymous post!

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  41. The fact that you admit that caring for your son is expensive, emotionally draining, and demanding is indicative that it is a burden on your life. You face challenges caring for him that an average mother would never have to worry about, and you are looking at life-long care as well. So, technically, your son is a burden, but you don't resent him for it, and love him as any mother loves her child, basically nullifying the burdensome quality. I also agree with the woman you spoke to," If there are 10 kids with mild autism and one with profound autism, the money should go toward helping the 10 kids". If a person's disabilities are severe enough that it is obvious that they will never hold a job of any sort or ever live independently, then I feel the children with hope of achieving those ends should receive the assistance as opposed to the funds being wasted on a hopeless case. Funds should of course be allocated to looking for cures and treatments for all ill individuals, but otherwise I agree with the woman you spoke to.

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  42. I do not have a special needs child, but I can guarantee all parents that in the case something should happen to their children to make them a special needs child, they will welcome the support financial and otherwise of their comunittee. All children/people make amazing contributions to their families and those that know them best. Sadly smart and educated does not equate wisdom, compassion, and the ability to see a person for the gift they are. I work with the elderly and I am also saddened by the insensitive treatment and comments made by people as to their drain on society. There is ENOUGH of everything to go around. We do not live in scarcity. Even if we did, it is not worth it to de-huminize individuals with disablities. Your son is lucky to have such an amazing mother as you. Keep up the good work.

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  43. I could not disagree more with the idea that funding should be decided based on a child's perceived potential. That makes me angry for all kinds of moral and emotional reasons, but it is also wrong from a "rational" point of view as well. That child, the one with profound autism, what will their future look like? Even if that child will never live independently, good intervention could be the difference between being able to take care of their own basic needs (feeding, using the toilet, etc) thus being able to be in a group home, and being in a nursing home with someone taking care of those needs for them. Looking at it rationally, that is a huge difference, both financially and in terms of that person's quality of life. The idea that funding the education of kids with higher needs takes away from kids who are less affected is a false dichotomy. Giving kids what they need to reach whatever (as yet unknown) potential they can is an investment, and that is true of every single child, special needs or not.

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  44. Some say yes. Some say no. The majority opinion is evident in Special Needs insurance benefits; availability and accessibility of Community Accommodations & Modifications and Services & Supports; Universal Design for Learning; prevalence of public abd private Special Needs Research and Organizations; 'Think Beyond the Label' Employment Policies and Trends; as well as, decisions by Voters and Legislation regarding Special Needs funding, laws and tax breaks.
    The list is exhaustive of how people view individuals with Special Needs. The cliché, "Put your money where your mouth is." comes to mind.
    Thanks for addressing an important conversation.

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  45. I have so many things to say about this. I'm appalled that someone who has a special needs child would say that her son deserves more since he's not as bad off. Well, if her child was a more severe case, I'll bet her point of view would be very different. That's someone who can not see beyond her own nose. I thought we were getting past this as a society. What about all of the typically developed people out there who are non-contributors of society?
    I think my son Lazaro (9 yrs, Prader-Willi syndrom & Autism) may contribute more than most people just by being who he is. It may not be the normal way of thinking about contributing,(having a decent job or whatever) but he brings a light and joy not many have, an innocence and purity to the world. I was thinking the other day about how genuine his expression is. It would never occur to him to lie, he would not intentionally hurt someone else. That can't be said about most typically developed people. Even kids these days can be nasty. It's a shame that people would shut these special kids, special people out of society, for fear of what they may learn about themselves. I for one think we should embrace the way they are different and celebrate them for it, enjoy their special qualities and accept them for it. For they are a reflection of ourselves and for some it may be difficult to look at.
    For me, I have become a better person for having my special son. Yes, it's more challenging than for other parents and as a single mom it's not easy, but I think I've had the privilege of being exposed to this world. I've gotten to see what I am really made of.
    We could all look at not only the child, but the people around them that they touch and how it's a choice to have it be a burden or a blessing. And we get to make that choice every moment, everyday.

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  46. First off, I don't have a child with special needs. What I do have is the ability to empathize with others and am able to handle polite conversation in social settings. My feelings about this post is absolutely appalled that you suffered through such an encounter with another mother who also spends her energy as her child's advocate. Now I'm going to stop comment before I write some expletives on your behalf.

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  47. For the people that say we are not worth the cost to society, I am tired of your lack of love for your fellow Americans. Hitler killed many people in addition to six million Jews.

    In all, between 200,000 and 250,000 mentally and physically handicapped persons were murdered from 1939 to 1945 under the T-4 and other "euthanasia" programs. The magnitude of these crimes and the extent to which they prefigured the "Final Solution" continue to be studied. Further, in an age of genetic engineering and renewed controversy over mercy killings of the incurably ill, ethical and moral issues of concern to physicians, scientists, and lay persons alike remain vital.

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  48. Forced sterilization in Germany was the forerunner of the systematic killing of the mentally ill and the handicapped. In October 1939, Hitler himself initiated a decree which empowered physicians to grant a "mercy death" to "patients considered incurable according to the best available human judgment of their state of health." The intent of the so called "euthanasia" program, however, was not to relieve the suffering of the chronically ill. The Nazi regime used the term as a euphemism: its aim was to exterminate the mentally ill and the handicapped, thus "cleansing" the "Aryan" race of persons considered genetically defective and a financial burden to society.

    For the people that say we are not worth the cost to society, I am tired of your lack of love for your fellow Americans.

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  49. Nazi Persecution of the Mentally and Physically Disabled

    FORCED STERILIZATIONS

    The "sterilization Law" explained the importance of weeding out so-called genetic defects from the total German gene pool:

    Since the National Revolution public opinion has become increasingly preoccupied with questions of demographic policy and the continuing decline in the birthrate. However, it is not only the decline in population which is a cause for serious concern but equally the increasingly evident genetic composition of our people. Whereas the hereditary healthy families have for the most part adopted a policy of having only one or two children, countless numbers of inferiors and those suffering from hereditary conditions are reproducing unrestrained while their sick and asocial offspring burden the community.

    Some scientists and physicians opposed the involuntary aspect of the law while others pointed to possible flaws. But the designation of specific conditions as inherited, and the desire to eliminate such illnesses or handicaps from the population, generally reflected the scientific and medical thinking of the day in Germany and elsewhere.

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  50. Oh, this made my stomach turn. I can't believe people feel this way. For one thing, why is anyone's worth based solely on their societal contribution? More importantly though, how can anyone presume to measure those contributions or assign them value? Is creating jobs more important the bringing joy? This sickens me and I'm so, so sorry these "decent" women subjected you to such a narrow-minded, heartless conversation.

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  51. Nice post. I think that somehow we should be able to find the resources to help all of the kids who need it.

    That's something I WANT my tax dollars spent on, rather than some of the crazy ways it's actually spent.

    And you are exactly right that your sweet son is just as deserving as anyone else.

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  52. Ugh. I'm very rational minded too, but people without compassion bug me. This isn't a business decision - you have to provide services to all people because they're PEOPLE. Sheesh.

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  53. I have been following you for several months. Just linked up through Yeah Write. I love this post. I love how you love Max, how you teach me and how well you write. Great post.

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  54. Those comments infuriate me. Why do people think that they are somehow enlightened enough to proclaim who is worthy in this world and who isn't?

    How ignorant. I don't have a child with significant disabilities but my father is brain injured and without the help from the government and the head injury society, and all the specialists involved that helped my father to cope then I'm not sure how my life would have turned out.

    What a ridiculous thing to say. Why must people quantify another's worth?

    I'm sorry you had to encounter such ignorance amongst women who should know better.

    Your son is quite the handsome fellow and obviously an inspiration to many.

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  55. I read "Annies Coming out" a beautiful biography written by a girl with cerebral palsy. I think that book shows you that you cannot decide who should have care and who should not.

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  56. I admire your quiet patience and your calm mind.
    It's terrible that people think this way, and the only chance we have at changing their minds is through educating them. You are doing a great job at letting people see the way things really are, through your perspective, and you are building awareness one person at a time.
    Way to go!

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  57. Wow-so well written an obviously heartfelt.

    What bothers me is that while people can have their own opinions, they should know better than to make such insensitive comments to you. Wish people would grow some sensitivity.

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  58. I think what missing in this great country is a little compassion and understanding of those who live out of the "norm" of society. If everyone could recognize that and work toward being more open and accepting we would find ourselves living better lives.

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  59. The thing is, I don't think any of us should be rational when it comes to people (ALL people) acquiring the care and advantages they deserve.

    No.

    We should all be irrational, screaming, pacing lunatics until the world puts their priorities in order.

    Cheers to you for this post. And to Max for teaching better lessons than I ever could...

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  60. I'm so appalled that it took me a few minutes to even be able to type a response. I too am the mom of a profoundly special needs child. He is 9. He is awesome in every sense of the word. I feel sorry for women like the ones you speak of, they can pat themselves on the back and call themselves "rational" when the truth is they are anything but. They are narrow minded and ignorant.

    Your son is beautiful and his smile shines from his soul. He is anything but a burden.

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  61. Children, no matter their needs, are blessings, not burdens. You're a wonderful advocate for Max, and for children with special needs and their families.

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  62. There is a common link in the responses to this article. It seems that everyone feels they're owed, entitled, or have a legal right to funding because their kids are SN. It's frightening how many people feel the government should financially take care of them. No one is owed anything. Yes, you pay taxes but if the majority of you are honest, you get the taxes withheld in your paychecks back in Earned Income Credits at the end of the year.

    Why should we all work our asses off to pay outrageous taxes to pay for your kids?! Especially those who had a SN kids then turned around and had even more children knowing that odds were they'd be SN. Why should I be forced to wait to have kids until I'm in my 30's because I can't afford it now due to having to pay half my check to take care of YOUR kids?!

    The sense of entitlement on this board is absolutely mindboggling and not a one of you can see it. The government and those who pay taxes in the USA do NOT owe you anything.

    Kathie41379

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  63. Ellen,

    I love you. I'm so glad you linked up with this post. Max is such a lucky kiddo to have you as his mom. You are phenomenal.

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  64. He is lucky to have a mom like you. Powerful writing. Ellen

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  65. I do understand. I am an aunt to an amazing, beautiful, BRILLIANT, musical, difficult, often odd, affectionate, loving, wonderful 8 year-old nephew. He has a tiny piece of a chromosome missing. Nobody knows what that means because it's unbelievably rare. He swims, sings, plays the piano, rides a bicycle and a dirt bike and gets into a lot of trouble.

    He needs assistance. He can't be mainstreamed. His ADHD is off the charts. He deserves assistance just as much as those 10 mildly autistic boys.

    I can't WAIT to see what the future brings him.

    Beautiful post.

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  66. He is so lucky to have you!! He has already contributed to society and touched the lives of many families through this blog! I'm shocked that those women would say this. It's not right. Every child deserves the chance to reach their full potential, no matter what label or level of ability!!

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  67. Thank you for this thoughtful and heartfelt post. You are an amazing advocate for Max. I would echo Silvia's response. I also have a child with high-functioning autism and although I am grateful for the support he gets, I absolutely accept that children whose challenges are greater also need greater supports. It's really unfortunate that these remarks come from a parent of a child with a disability - we really should all have each other's backs.

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  68. I don't have special needs kids but I so loved this post. I've never seen special needs children or adults as anything other than people and have always gone out of my way - small a difference as it may make - to acknowledge special needs kids and adults with a hello or to talk to them in exactly the same way I would talk to a so-called normal person. We have a nephew who has severe autism and I read a book written by an autistic person whose message was: "We are in here. We can hear you even though we do all this other stuff - we are listening. We are intelligent." It profoundly affected me. So did your post. You are a wonderful advocate for Max and for all special needs people! (-:

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  69. I think you give that "savvy woman" more credit for intelligence than she deserves. Moral and emotional ignorance is not the mark of a keen mind. Reducing life to a cost-benfit analysis is soulless and uncaring.

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  70. Beautifully written! I agree with you 100%.

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  71. Could not agree with you more. Excellent post.

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  72. Fantastic post. I agree 100%.

    Worth should not be defined by how much money one can make, how many children one can care for, or how far one goes in their chosen field.

    Worth should be defined as how deeply one touches another's heart.

    This is the first time I've read your blog, but from what I can tell, Max just touched 74 hearts with just this post.

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  73. Well said!!
    I used to nanny for a boy with CP and he held a special place in my heart. All children are special and a gift. All of them deserve to be treated as such.

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  74. Max absolutely has value but...set the bar a tad higher than Justin Bieber, don't you think? I mean there are stuffed animals in my kid's bed right now who have more gravitas then that boy. Wonderful & important post, thank you.

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  75. Ellen, such a beautiful picture of Max and his amazing smile! Where does this utilitarian view of human worth come from? Where does it end? And shocking that people would feel it is acceptable to voice these opinions to you.

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  76. Ellen... I'm sitting here speechless. My globally developmentally delayed 6 year old daughter has been repeatedly denied a spot in our local Early Intervention Centre's classroom due to her perceived lack of potential. Learning that children with lesser needs were being taken into the program because they were more likely to make gains was probably the most devastating and hurtful realization I've experienced. I was shocked that an agency who's mission is to help all children with disabilities would themselves discriminate against one with greater needs. I'm so saddened to learn that this isn't an uncommon way of thinking.....

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    1. A lack of potential? Really your Early Intervention program should be ashamed of themselves. How dare they have the cheek to call the program that, yet still deny your DD daughter the help she desperately needs? That is wrong and quite frankly you should complain or tell them you will sue them.

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  77. I have a child with cerebral palsy on my soccer team. He's six years old and every time I arrive at the field, he's the first to greet me with a high five and ready to play. His enthusiasm and dedication inspires me.
    Rick

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  78. Ugh. This post made me sick.

    I don't know why our whole society is insistent on judging the worth of a human being, especially based solely on production.

    People are people. No more, no less.

    And if we were to be callous and look at it solely from a cost/benefit model, who is to say who will contribute the most to society? If we continue to judge contributions based on net worth, then our civilization will fail.

    I am rambling here, and couldn't possibly respond in a comment box in as much depth as I would like, but I am completely floored that people hold opinions such as these.

    Your child is a treasure just like every other child in the world. At least he doesn't have to hear all of those ugly opinions, at least at this point in his life.

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  79. To the anonymous poster @june 13, 6.08pm....

    Most EIC programs receive state and federal funding. These programs MUST show where their students progress or they will be shut down. Would you prefer that, since your kid isn't able to benefit then the entire program be closed down? Would that satisfy your hurt feelings?

    If a child (as you put it) with "lesser needs" is able to succeed in the program, then why shouldn't they be allowed that chance? If EIC can offer 10 kids the opportunity to function in public schools and society, as well a secure future funding to help even more kids, why should they turn those kids away to help yours?

    You say your child has a "perceived lack of potential", so what have YOU done to show the school that your child HAS improved? Have you worked diligently with your child so that you can go back the next time and say "look, he/she has accomplished this so here is proof that EIC can help him/her" or have you just sat on your butt and whined about "my kid didn't get in :("

    If the majourity can definitely be helped, then why squander precious resources on the possibility of a few maybe being helped?

    kathie41379

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    1. Do you even have a heart? The EI program HAVE a responsibility to help those with greater needs. If not, they should be shut down or fined. NOWHERE did she suggest the program should be shut down so I dont know where you got that crazy idea from. Her child has GDD did you NOT know that. You disgust me completely.

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  80. I can't imagine the uphill battle that you must face. Max seems like he's more than worth it, though :)

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  81. Everyone is significant and contributory in their own way. So true that we cannot judge people by a diagnosis or appearance or any other thing that doesn't give the whole picture.

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  82. Significant post and beautifully written. I don't get it--the woman's opinion. I just don't and it blows me away that one could be in line with such thinking.

    Grateful you are sharing your story.

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  83. Caring for Max is like caring for my little Elijah. He is smaller than everyone else and (gasp) he is a praying mantis! I rarely see him eat flightless fruit flies, let alone crickets. I do not think Elijah is a burden to society. You are being Jesus to the least of us. I like that.

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  84. Being gifted is a burden at times. I am rarely understood and often underestimated. You think it's easy for me ALL the time, but it's not! Sometimes, I have questions NO ONE IN THE ENTIRE WORLD can answer and complex problems like wigging out in class and too much honesty. You obviously hate smart people.

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  85. Ellen, you're going to make me cry I wish with all my heart and soul that other saw people who have special needs the way you do I mean sure I can 't do things as easily as other people can but that doesn't mean I'm less than anybody else.

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  86. It's horribly sad how quick people are to condemn and judge.

    Just as people condemn and judge sweet Max without ever knowing him, people condemn me, that woman who kindly said "You can't be rational about this," in an effort to move you, Ellen, from what was, undoubtedly a conversation that was upsetting and difficult. Because I am your friend. And I like and respect you immensely. And have gone out of my way, since the moment we first met, to share Max's story, and your story and to support and applaud you.

    And so, when I saw this conversation happening and knew that it was NOT a conversation you wanted to have, or should have, or should ever be a part of, I tried, in a gentle way, to help you extricate yourself from it.

    Because I'm a friend, not a monster. i'm the mother of four children and a RABID supporter of children with disabilities.

    So all of those of you who read this post and excoriate "those people" or who decided to brand my comment as "condescending" (excuse me, were you there, Lia?) are as guilty of judging me - incorrectly - as you deemed me - also incorrectly - of judging or evaluating Max.

    And while I applaud you for tackling this topic, Ellen, as someone who was sitting there when this conversation happened, I can only say that your perception is your reality. As is mine, as is the other woman who was part of the conversation with you. She was not, in any way, saying that Max, or any child with disabilities is not worthy of care, attention and love. But that is a different argument to have.

    My appearance here is to remind all of you that when you rush to judgment, you can often do great damage. And Ellen, when you try and tell a story but the best you can say about someone who reaches out a hand in friendship to help you out of an uncomfortable is that she said something "kindly" which then causes legions of people to come out of the woodwork and attack that very friend who supported you .... well, in my book, that stinks, too.

    And, as a result, we all lose. Because I can promise you that not one single participant of that original conversation doesn't value and appreciate all that you do, your passion for your family, for Max, for children with disabilities and for sharing your message and helping as many others as possible in the process.

    But on your blog and because of this conversation that has arisen, we become victims of the same vitriol that so many of you are subjected to by people who don't know any better.

    I hesitated to write this response but am not ashamed of trying to be a friend. And I refuse to be judged - even namelessly - by people who don't have the full story. And Ellen, I think you know that my actions and my words were ones of kindness and respect. And that, readers, is the rest of the story.

    At the end of the day, we can move mountains with kindness, respect, learning, understanding, sharing, support, the willingness to listen and by caring. Hatred, making hasty generalizations and spewing insults lead to change. Those other things? They do.

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  87. Shelly, I will write this here for all to see, and then email. I wrote "kindly" and I meant it, and I'm honestly not sure why that stinks. It WAS kind of you to step in. And because I do respect you, I also wrote "a smart woman I respect." It didn't occur to me to further elaborate on your words because that wasn't relevant to the point of this post. It didn't occur to me because I think of you as a good person.

    I know full well how judgmental people online can be. I am sorry that you got comments you didn't deserve. And I can't think of a better bottom line than what you wrote: "At the end of the day, we can move mountains with kindness, respect, learning, understanding, sharing, support, the willingness to listen and by caring."

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  88. My son is twenty years old. He just finished his second year of college. He is an A student. He has also been on multiple nationally syndicated radio and TV programs. He has Cerebral Palsy. Some still look at him as only disabled despite all he is doing. They miss the real story, a young man with gifts and talents who will go on to do great things. If we had seen our son the way others do, we too would have missed out on what has been a great adventure!

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  89. Excellent blog post! You wrote what I so often feel...thank you.

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  90. My 16 yo with cerebral palsy is legally blind, and has seizures, guess what, on his 16th birthday he received an email invitation to his very first paying job. He is an counselor at Boy Scout camp this year. He volunteers at our church food bank, carrying groceries. He will be an Eagle Scout by this winter, and has been part of The Order of the Arrow for years. He is part of his high school ROTC unit, and will be part of the command staff this Fall. He is looking forward to going to college and being a high school history teacher, and being a part of Boy Scouts into his adulthood. My son can and will be a productive member of society, because my husband and I expect NOTHING less from him.

    The overall main problem with having this type over discussion with people that are really clueless when it comes to having special needs children is this...There are so many people that find themselves caught in the special needs tragedy they refuse, flat out refuse, to see any way out other than getting their family signed up onto social security and all the other programs out there. In the beginning of our journey, we tried social security, because I was spending a fortune, not on doctors, but on transportation costs! They told us liquidate everything and we can help. Help turned out to be a couple hundred dollars a month, in exchange for everything my husband had worked for...no thank you. But for some people this is an easy way out, and unfortunately not easy to remove yourself from. I mean free money...but at what cost. There are people that that advantage of these programs, that make the seriously needy look like they are the problem, when they are not. I have a friend trying to get her two teens benefits, their issues...lets not go there, well, okay, nothing medical...Her justification is they need stuff, like what a new iPod?!?!

    So, I don't mean to direct this rant in any way to people who need help with their medical bills, but in all seriousness people are out there that just want to take, and don't care how it reflects on the legitimately deserving of services and benefits. I do however, strongly encourage parents to not tie their children's hands, and forgo any and all "help" from the government if they can manage it, because there is no better, no more rewarding feeling than for your child to know you expect great things of them.

    And just so you know, we raised this child and three siblings (including a sister with a congenital heart defect)mainly on a service members salary, our health insurance was pretty great, but we moved a lot which made our medical care rather inconsistent. My husband was for the most part the main bread winner. I was on WIC with all my children, but the last, and that sums up our dependence on Uncle Sam.

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  91. I am more easily frustrated and less coordinated than my friends. It is not because I am stupid. I am an atypical autistic. Because I am so intelligent, I often beat myself up over a mistake. Some people say I'm spoiled, rude, hyper, an idiot, but they are just jealous of my awesome life. I'm not afraid of my healthy body doing gross things (I.e. excretion of wastes). I do not discriminate against snakes, pit bulls, axolotls, or any animal, because I love them. Why do people use animal-related insults? It makes me angry. One case I've heard of is a McDonald's employee calling a boy with Down syndrome a "ret**rded monkey." It's sad, but true. Monkeys are actually very intelligent and it reflects on the negatives of special needs people.

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  92. Hello, you can find a response to this blog posts and some of the comments on my own blog at http://ppd-nossocmajor.blogspot.com/2012/07/special-needs-battle-of-and-for.html

    Thanks!

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  93. Thank-you for sharing and inspiring me <3 you hit the nail on the head!!! My child doesn't have a physical disability but several mental health disorders and I feel the same.

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  94. I have a sister with 2 amazing children both with special needs....As a single mom she has had to become very creative to find ways to pay for the extra they need to have a high quality of life....It is never ending and with all the cuts....these children are having their services cut.....We as a society need all the childern to be able to continue to get the therapies,equipment, food supplments, and other training so they can do the "work" they can to do in this lifetime.....
    I am working with my Autistic newphew to help others with special needs get the Cash they need to continue with their services......
    http://www.facebook.com/pages/2010-Blessings-a-cash-Gifting-community-Families-with-Special-Needs/320207014758301

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  95. What people do not understand is that they equate the most popular names in society with the ideas or concepts that they are known for. The problem is that often that person did not come up with the end result by themselves, but rather nurtured an idea assisted by others to develop the end result.

    In other words, your child may not be the one who actually creates something, but the inspiration that you have said he provides could be the catalyst for something great. Who knows how those who have been inspired by your son, will affect others? Who knows what they will do? Or how they will affect someone else to do something great?

    Narrow minds see limited possibilities.
    SueEllen

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  96. What people do not understand is that they equate the most popular names in society with the ideas or concepts that they are known for. The problem is that often that person did not come up with the end result by themselves, but rather nurtured an idea assisted by others to develop the end result.

    In other words, your child may not be the one who actually creates something, but the inspiration that you have said he provides could be the catalyst for something great. Who knows how those who have been inspired by your son, will affect others? Who knows what they will do? Or how they will affect someone else to do something great?

    Narrow minds see limited possibilities.
    SueEllen

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    1. Your comment drifted into my inbox, and I just had to say...LIKE LIKE LIKE, and SHARE...
      However, your comment implies purpose, and special needs children (I have two), don't fit into a lot of people's notion of how this world should be. I have found that people of Faith, seem to have a better understanding that there is a bigger picture that our Earthbound selves are not privy to.

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Thanks for sharing!