Thursday, August 22, 2013

Screw the special needs haters—let's teach people well


Perhaps your heart started pounding faster, as mine did, when you read the now-infamous hate letter sent to the mom of 13-year-old Max, who has autism.


Particularly horrific:

"That noise he makes outside is DREADFUL!!!!!!!!!! It scares the hell out of my normal children!!!!!!! When you feel your idiot kid needs air, take him to the park you dope!!!"

"He is a hindrance to everyone and will always be that way!!!!!! No employer will hire him, no normal girl is going to marry/love him and you are not going to live forever!!"

"Do everyone in our community huge a favor and MOVE!!!! VAMOSE!!! SCRAM!!!!! Nobody wants you living here and they don't have the guts to tell you!!!!! Do the right thing and move or euthanize him!!!"

Like many, I've felt pained for Max and his parents, Karla and Jim Begley; the father spoke of being scared for his son's safety in a TV interview, the mom cried. Their community in Ontario, Canada has rallied around them and local police continue to investigate.

No matter what happens, this woman will never be able to escape from herself. She has to live with that hate, that poison, inside. How it must suck to be her. How sad for her children.

Once I got past the seething stage, I got a grip. We can sit around fuming and despairing over the special needs haters of the world, or we can do whatever's in our power to help people better understand and respect those with special needs.

Parents of kids with special needs do this all the time. While extreme intolerance like this is rare, we regularly contend with misunderstanding about special needs, ignorance and discomfort. When kids or adults aren't sure how to act around our children, we bridge the gap: "Hi! He'd love it if you said hello," or, simply, "This is Max." Once there's an interaction, it's easier to help people see how in many ways our kids are just like others—and to explain their disabilities, if the conversation goes there.

Some of us try to make a difference by raising awareness about language people use. When words like "retard" get flung around, even jokingly and even when not used as an insult, they fuel disdain for people with intellectual disability. It's a nasty word—exactly the one the hater used when she wrote to Karla Begley, "You had a retarded kid...deal with it...."

"That's so retarded!" a relative remarked recently, when he was visiting our house. "I can't stand that word—it's offensive," I said. "It perpetuates the idea that people with intellectual disability are losers or stupid. Please don't use it." He instantly got it, and we moved on. Obviously, speaking out against a word is not the answer to changing perceptions of our kids (as if), but it is one more way to raise the respect bar.

For sure, it isn't easy to deal when our kids' behavior irks people. The other week, Max had a sensory meltdown in a restaurant and let out a piercing screech. We were seated next to a table of women—it looked like girls' night out—and they all stared. I knew they were thinking he was being a brat. When Dave took Max for a walk, I leaned over, apologized and said he had special needs and sensory issues. One woman asked what about the restaurant had prompted that reaction, and we got into a discussion about how a new setting, the din in the room and even dim lighting could unnerve Max. "I never knew about that," she said. Sometimes, all you can do is focus on calming your child (and yourself) down; sometimes, you can help people understand where it's coming from.

I don't have a Gandhi thing going on; the patience and goodwill aren't always there. At times, I get ticked off by the stares and it takes a lot of self-restraint not to snap "What's your problem?!" But over the years, I've learned that I'll ultimately do more good for Max if I can get past my defensiveness and help people better understand his needs—and the wonderful kid he is. One person at a time, I'm making a difference. One person at a time, you're making a difference. All of us together, we're making a difference.

If you don't have a kid with special needs, I beg you, teach your own children well. Encourage them to say "hi" at the playground to kids with disabilities, as they would with other kids. Answer their questions—explain why a child with autism may flap his arms or make sounds or why a kid with cerebral palsy may walk the way he does—but also talk about the ways kids with disabilities are like them. Every one of us has the power to educate, enlighten and eye-open.

Karla and Jim Begley, we are thinking of you, and doing our part to help. I hope they figure out who wrote that letter, for your peace of mind, but I also hope you take comfort in the ways you and your Max have surely changed people's perceptions of kids with special needs. You are surrounded by a fellow army of parents marching on, right past the isolated haters, determined to make the world a more welcoming, respect-filled place for kids with special needs.

Image: Flickr/noticelj 

36 comments:

  1. Very well written, Ellen! One person at a time, you are so right.

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  2. Wonderful response, Ellen!!! I shared it on my Facebook page.

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  3. beautifully written Ellen - absolutely lovely - thank you. It broke my heart reading parts of it (couldn't bring myself to read it all) but reading your post today made me feel much better.
    Kristen

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  4. My heart goes out to Karla and Jim Begley.

    This week my daughter had a major meltdown in the grocery store it was a severe one. I seen a lady coming my way and was expecting a lecture and some bad stuff. She surprised me and started talking to my daughter nicely and turned around and told me it's okay not many people have the patience and love for a special needs child (my child looks normal) It was refreshing and it diverted my daughter off her drama and the shopping trip was uneventful after that.

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  5. I was SHOCKED by the letter too (I wrote a post about it today) I also try to educate people, especially kids about CP I see my wheelchair as a platform to teach people that we are all more alike than we are different.

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  6. Dear pissed off mother. As the parent of 2 kids without special needs let me tell you something important which speaks to what seems your main interest. You and your kids. Your kids are not scared of your neighbor. YOU are scared. If you stopped giving off the stink of fear your kids would not be scared. My kids went to school with kids who like your neighbor had special needs that caused them to loudly vocalize during class or lunch or even during special events. As young as kindergarten they might walk into a bathroom where a child is on the floor kicking and screaming. Did this make them afraid or upset. No. Being raised like this it just seemed a normal part of life. No different than the crying baby you wrote about in terms of fear. Do you understand how valuable this is? To grow up to be totally comfortable with the full range of humanity. I guess you don't. Which is really what is making life miserable for your own family. Sincerely. Annie.

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  7. Our kids are not special needs though they have issues. In September they will be in an integrated class, and I'm trying to prepare them to be friends with kids that are "special." I can't find any books or videos that demonstrate that special needs kids are just like they are inside, though they might appear different on the ourside. Can you, or anyone, suggest anything?

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    1. I don't have anything specific but I found a few lists by searching "children's books about kids with disabilities." There are so many books out now that discuss specific disabilities....but before that I would just buy books that talked about anyone who was different. I remember a lovely book called Cleversticks...which highlighted a student using chopsticks in school for example...

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    2. Suki, how old are your kids?

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    3. Thank you Joanne. Ellen, our kids are almost 5.

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    4. I have a post in the works on this! Look up: Susan Laughs, What's Wrong With Timmy, It's OK To Be Different, Leo the Late Bloomer.

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    5. My Friend Isabelle by Eliza Woloson - it is about a child with Down syndrome and a friend without - it talks alot about what is same about them in contrast to how little is different.

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    6. You do not walk alone. The sense of entitlement and cowardice of the letter speaks volumes. Sometimes I hate how we are have to educate. Wouldn't it be nice not to be defined as special?
      Actually, I have less problems with other children than I do with the adults. Kids ask questions. We need to have good answers. Once when my daughter was at a friends house swimming, two sisters said "what's wrong with her?" Our 6 year old friend said "nothing, she doesn't talk, but she's fun" and that was that. Have faith. Prayers to you from NJ

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  8. As always Ellen...very well said. I couldn't agree with you more about educating one person at a time. Although I think you are working in much broader strokes :-) Thanks!

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  9. Very well said! I worked in an inclusive preschool for five years. At that age children are very accepting, not always the parents though, sadly. I think it is so important to teach them acceptance at that age so they carry it through their big school years :)

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  10. One person at a time and with patience, a lot of patience, cause education, changing ideas takes a lot of time but it's worth it. You all are not alone, not only parents with special needs childs are trying to be eye-openers for others.

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  11. your blog definitely has changed me...I now know how to approach a special needs kids without worrying if I might offend them by saying something wrong, so I just used to ignore or pretend I didnt see them...I am sorry...but now I know how they r like any other kid..n I will sure teach my 2 year old daughter from now itself how every kid is special in their own way

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    1. That. Is. Awesome. Thank you for sharing that.

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  12. Great post! When I first read the letter I honestly had my doubts that it was authentic...I mean how could a person possibly be full of that much hate? Obviously, it is and it is heart breaking that a "mother" could do that. Clearly this incident demonstrates the need for continued education and awareness for individuals with special needs. The one thing that gave me some hope was at the end of the news clip on the family they showed the neighbors gathering around with a show of support. I really believe there are way more kind people on this earth than those filled with hate.

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  13. As always, keep up the good work and the wonderful writing. As far as I can tell, neither of my kids (almost 7 and 3) has noticed that some of their friends have special needs. Just like they've never asked about our close friends with kids who also happen to be gay (except to say longingly "it's so cool that X has two mommies...."). But I assume it will come so if you wanted to do a post on the best resources (books, movies, toys) for teaching typically developing kids about kids with special needs, I would love it!

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  14. Why do people write stuff like this? As a mother, she should have the empathy not to bash someone else's child.

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    1. I think that's exactly the question on everyone's mind—what kind of human being, let alone mother is capable of sending a letter like this? It's one thing to think these kind of thoughts, it's another to actually share them.

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  15. Perfectly and beautifully said, Ellen!

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  16. Great post! I have had the same experience, if I explain to children and adults alike what is the same about my dauther with Down syndrome, people can deal better with the parts that are different. It is a one person at a time mission but every lake is make up of lots of single raindrops so I have faith we'll get there someday.

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  17. back in 1990 or so, my oldest daughter was a guest on the Maury Show featuring kids with tourette's syndrome.

    after the taping, we attended an off-broadway production - can't remember what it was called, something like "smash!" or "bang!" or whatever, featuring percussive music using stuff like heavy work boots on a sprung wood platform, trash cans, empty plastic water jugs, smashing china plates into a big plastic barrel, oil barrels, etc. (it sounds dreadful, i know, but it was ****wonderful****).

    we were waiting for the curtain to go up and the audience was about 7/8 full (not quite a full house/standing room only but there were only a few scattered empty seats here and there). my daughter had buggered off somewhere down the front with a few other guests her age and i was about halfway back sitting with the most delightful 8yr old and a boy who turned out to be the nephew of "bennie" on the old show Home Improvement. the two of them were among the "vibe-iest" guests and the little girl was just *bouncing*. she developed a "hind end" tic that had her leaping out of her chair straight up in the air and then down. the boy was so excited, he kept pounding the arm of his chair. him being so powerful (built like a linebacker) and the chairs all being connected together meant the impact was felt from one end of the row to the other.

    after a few minutes of this, a lady behind me leaned forward and suggested - very politely, i could tell she'd been considering hard how best to phrase her point - that perhaps this wasn't the best venue for "my" kids to be. i smiled and said don't worry, they'll settle once the show starts - they're still excited from taping an episode on the Maury show about kids with tourette's syndrome.

    her face froze, half mortified and half fascinated, and she asked what tourette's was. her friends on either side leaned in close, too. so i gave them a brief overview of the condition and what to expect.

    once they understood that, all three of them turned into total grandmothers and were the first to hush up anybody else who complained.

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  18. My story in response to the Ontario letter was an event this weekend where a stranger showed all kinds of tolerance and love and understanding. I blogged about it here: http://blog.dadsofdisability.com/antidote

    Thanks Ellen for a thoughtful response!

    Gary

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  19. Hi Ellen, this letter has been sitting, uncomfortably, in the back of my mind for a while now. Your response to it was great.If we don't give up, we will get there... we will make a difference, we will teach people how to see our kids for who they really are. I'm impressed with your leaning over and telling the women about Max... We 'use' Dexter to raise awareness, too. I really enjoy your blog.

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  20. Awful! The comment about donating body parts to science made me physically sick!

    My daughter has 2 sisters that were born with a very rare gene disorder (which we now know she carries) who have special needs. It prompted her to donate her free time to an autistic charity

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  21. The person who wrote the hate letter is obviously ashamed of his/her behavior and attitude or they would have signed their name. It is too bad a person can be so cowardly and so filled with hate. Compassion and empathy are wonderful, especially when share

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  22. Same thing happened to my family. When my son was in pre-school the parents gave me a letter. Jared didn't have a diagnosis yet and was in a mainstream class with a SEIT teacher...All of two parents signed the nasty letter, unbelievable! My former neighbor used to throw out his toys! Well life goes on and it is what it is. What I can tell you is that my boy is 15 now and we still run into some nonsense but the GOOD news is most people are kind and caring. AND MOST IMPORTANTLY, HE IS HAPPY!

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  23. Dear Max and Family,
    I just wanted to say, I love you. I don't know you, but I would love to have you as a neighbor and hear your enjoyment as you play, learn and grow. Please, never stop laughing or sharing your happiness regardless of how it sounds to this "normal" family. They are the ones losing out on watching the purest happiness on this planet. Obviously, by their definition, I am not "normal". I think that you were made perfectly, and given a precious Super Power. The power to see beauty in the things that most people never even give a second thought to, and to share your wonderment without fear of judgement. You are so special, don't ever forget that!

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  24. Dear Max and Family,
    I understand where you guys are coming from. My niece who will be 17 in December is autistic, her brother ADHD, and my youngest nephew has PDD, which is another form of Autism, who would have thought, but it is. I know what it's like to have an autistic child have a meltdown in a grocery store or just out in public in general, and get those awkward stares from people. And It does tend to make a person upset when people don't understand when that child is a special needs child. So whether the child is a special needs child or a normal child, they need to be taught the same and be able to understand that we should all be here for one another and love one another, and not hate. We shouldn't teach our children hate! But in school when I was a kid, there was this boy that was in a wheel chair, he wasn't made fun of, but I was, and I was considered a normal kid. So no matter how one looks at it, it's hate, and that's something that shouldn't be taught to children.

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  25. I don't care what disability anyone has.For all I know or anyone knows the children and adults with disabilities are the normal ones.And we are the ones not normal.My sisters have disabilities they have a hearing problem and learning disabilities They were made fun of and beaten up when they went to school.And the parents didn't care. I also have a nephew that is autistic, and he is the sweetest little boy. I do pray that they find who wrote this terrible letter, and do the right thing to see that everyone is special in their own way. May God Bless you and your family. And may God make her see the light in the wrong that she has done.

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  26. My reply to that poor family would be "Come to Saskatchewan!". I've been a support person for 10 years, and I have personally never witnessed or heard about something so nasty. I'm so grateful that the people that I support are surrounded by such a warm community that is eager to include them. As evil as that letter was, I think that it opened a lot of ears and educated a lot of hearts in a positive way.

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Thanks for sharing!