Monday, February 4, 2013

Shocking (and not-so-shocking) intolerance of kids with special needs



There's been an uproar this past week over horrific intolerance toward a child with Down syndrome. Lisa Morguess at Life As I Know It wrote about a blog written by a stepmother to an 11-year-old girl with Down syndrome whose posts are filled with frustration, disdain, disgust, anger and flat-out cruelty. The blog has since gone private, but not before Lisa captured screen grabs.

The woman talked of ignoring her stepdaughter. She called her a "full-blown nuisance." She said she got mad at her for no reason; as she herself questioned, "Where do the feelings of hatred and anger really come from?" She made fun of her behavior, at one point listing things that bothered her—everything from the way the child shovels snow to the fact that she does not think to request Chapstick for her dry lips.

The intolerance is extreme and the woman, despicable. Shocking, too. Yet if you have a kid with special needs you know that intolerance towards our kids is not unusual. It's typically not at this level, and it's certainly not always this blatant, but it's very much out there. And I do not think the world at large is aware of that.

Yes, people catches glimpses when the web and media bring stories to light, like the customer at the Houston restaurant who said "Special needs children need to be special somewhere else." Or the woman at the Missouri restaurant seated next to a child with autism who told the waiter, "Except for the retard in the next booth ruining things by making noise, everything is fine."

Max is surrounded by friends and family who are welcoming and inclusive; they have learned that in many ways he is just like any other kid, and they accept his differences. It makes intolerance that much more unnerving when we encounter it. A few months ago, Dave and Max were at a friend's apartment and as they were in a common play area a woman blurted, "Why don't his hands move normally?" And then, "Why is he drooling?!" Dave rehashed the scene for days afterward. He couldn't understand why that woman would have said those things.

Sometimes, intolerance has no words. I will never forget the mom in Barnes & Noble who grabbed her child and hustled him away when Max touched his arm and babbled at him, as if cerebral palsy were contagious. I cannot forget the stare-glares of other mothers; once, in our pediatrician's office, a mom gawked so blatantly at Max that I snapped, "Do you have a problem?"

Intolerance isn't just the wicked stepmother. It is all around, people without patience for those with different abilities, without understanding, without heart. It is what makes life that much harder for our children, people imposing yet one more handicap to overcome. It gives me deep anxiety as a parent, because I will not always be there to shield Max.

Someone alerted the authorities about this mom; she tells of being questioned by a police officer. In a follow-up post, Lisa notes that the local Down syndrome association is aware of the situation. You can only pray that this woman gets the help that she needs, though it's impossible to give anyone a conscience transfusion.

What incidents of intolerance have you dealt with?

30 comments:

  1. How mean of that stepmom! I've experienced many moments of intolerance my dad often insists that i stay in the car while everybody else goes visiting new people/shopping my mom tries to persuade him that I should go in too but she doesn't always succeed and ends up sitting with me in the car I used to feel bad that my own father, the one who played a part in giving me life, was ashamed of me but now I realize that that has NOTHING to do with me and EVERYTHING to do with him.

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  2. I was a special ed teacher for the past 6 years, and the last two years of that were an IDS class (Intellectual Disability Severe) ..these kids were functioning about 6 months of age to 2 years and all in wheel chairs, it was amazing how intolerant the other teachers in the building were!!! Some were amazing and would hold doors when they saw me coming with one wheelchair in each hand..others seemed like they were carrying some infectious disease. I learned how to deal with these dumb people, sometimes I would just stare back at them awkwardly if they stared at the kids, sometimes set them straight..just depended on my mood. :) I enjoyed those kids, I never pitied them! Just enjoyed seeing them everyday make those small gains..and they would! Now my own son is 3 months and was diagnosed with PVL in utero (guess it was a small stroke)..sometimes I still feel like I'm in the "Why me" phase..but he is such a joy. I'm learning to take one day at a time.

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  3. I was at a Childrens' Museum in Pittsburgh with my kids and I had noticed another boy in the room playing near us, maybe 10yo, whom I guessed had autism, but if so, was very high functioning. All of the sudden, I heard a dad say to someone (I assume his daughter), and right in front of the boy, "Don't talk to that kid. He's no good." My head wheeled around, I was thinking, this must be a joke, he must know this kid, right??! I'm staring at them and then the Mom and another girl come over and she says, "Yeah, I've been watching him. There's something wrong with him. Let's go." And they all turn to leave. The boy and I are staring there, mouths agape, and he mutters, "what did I do?" and wanders off. My heart broke for this kid. I will forever feel shame that I did not confront those people, or say something to the boy. WHAT is wrong with people?????

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  4. In my opinion, focusing on the intolerance of others does nothing to help us or our kids. I prefer to focus on the positive shifts in attitudes that I see and read about happening to our special kiddos by others. And we need to remember, until we had these awesome kids, were we once of the "staring" crowd too? I'm willing to bet many of us were. There is no excuse for outright cruelty, but to me, staring is not a form of intolerance. It's just ignorance. Big difference. Also, chances are, the people who make the cruel remarks are intolerant of any person that appears different to them. I don't think it is necessarily an intolerance of special kids, more of the world in general and I feel sorry for them. As for the girl you wrote about, I hope she gets to be with a family who loves and appreciates her for all of the blessings she has to offer the world.

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    1. I'm all for talking about positives. And definitely, our kids are lucky to be living in a time where much awareness is raised about their awesome-ness. That said, there is also a lot of progress to be made, and I (obviously) am fine with shining a spotlight on issues. Our family has most definitely encountered stares from adults that were of the disgust kind. Yes, of course, there are plenty of curious stares too from adults and kids alike, and those I've come to understand. But I would have never, ever stared at a child the way that woman in the pediatrician's office did before I had Max. Pure intolerance.

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  5. It's wrong, it's appalling, it's inexcusable.

    Sometimes, I get mad at my kid. I get mad at our collective lot in life. I cursed out God on my blog.

    But I'm lucky that I have a supportive spouse, good friends, and I bounce back.

    We all get frustrated. That's no excuse to take it out on a child.

    I do think most people are inherently good. I'd like to think this mom just doesn't have the support she desperately needs. Still doesn't excuse her behavior. Not by a longshot.

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  6. She is not that child's mother. She has no connection to her other than her spouse. This type of situation is when abuse is most likely to happen. That child is very vulnerable and I hope someone is paying attention.

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  7. That stepmother makes me so angry! I couldn't even get past that first screen grab where I just kept reading where she says, "If she were normal..." Judging from the woman's blog she must be a believer in God, yet to have such hatred for her stepdaughter I really wonder. I feel sorriest for the child; she doesn't deserve such a wicked stepmother. I hope that God works in the heart of that woman and helps her see what a blessing that child truly is!

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  8. If it wasn't the child with DS....which is an EXTRA 21 not a bent chrmosome...that female would deride some other vulnerable person ....abusers are equal opportunity types....and this abuser targeted a special needs child....but she could just as easily deride this kid out of her own 'insecurity' in the absence of DS.

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    1. I read the blog it made my skin crawl. How can someone be so evil to a child. The little girl will endure alot of bullying at school. At home she deserves her family to love her unconditionally.

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  9. I am glad you took the time to gather these thoughts and stories together.. it happens way too often, and how we come together as a community of special needs parents, for support and to tell our stories is the point of sharing, and advocating for our kids.

    I just blogged about how suddenly my daughter is on to this.. the stares, and how she is " different". Until now, I have suffered the brunt of these intolerant stares and behavior... I won't let her experience the same!

    Great job as always!

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  10. A couple of things. Yes the customer at the Houston restaurant was a jerk - but everyone else stood up to be counted and defended the boy and his family.

    We have a family at school. When their oldest was in Kinder, we found out that the younger child had Downs Syndrome. We have an early intervention program for 2yo - 4yo, and 2 lifeskills units on campus.

    Thing was the parents, immigrants with limited English, were told the child would never talk, walk, or be able to learn. Our principal, early intervention teacher, and BIL coordinator made multiple home visit and got the parents to enroll their child in early intervention. The boy walks, talks a mile a minute, and is learning to read.

    I love having the early intervention and lifeskills on campus. The mainstream students learn how to interact with students with special needs. They at least attend specials together. I had a student this year 2nd grade who was afraid of the special needs students. She and I had conversations - turns out she was afraid she could "bump into them and kill them". Who knows how kids get these ideas.

    A few years back we had a 3rd grader who wore hearing protection in the cafeteria. A new student in 4th grade - pointed him out and yelled "Look at that freak". You could hear a pin drop for a fraction of a minute. Then the 4th and 3rd graders let the new student know that his words were NOT welcome. The kids explained that the boy was autistic and the noise in the cafeteria was physically painful to him. The new boy tried to defend his position - the other kids told him no you don't make fun of people here. They then refused to speak to him or play with him outside of class until he apologized. It took a couple of days but he apologized and no more comments.

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    1. Seriously, seriously heartening to hear. Thank you.

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  11. That woman needs therapy, it sounds like she's relying on god when what she needs is someone to help her work out her issues of anger and frustration. She'll never be right with that child until she gets right with herself. I wonder how she'd handle having a crossdressing child who will probably want gender reassignment surgery as soon as he figures out it's an option? Probably not too well, I'm guessing! I guess that bulls--t line about The Lord Never Gives You More Than You Can Handle isn't true in that woman's case--she's way over her head and she could take that poor child down with her. I hope she gets help, she really needs it-- the bitterness just jumps off the page, doesn't it?

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    1. Yeah, she definitely seemed to think her thoughts/actions were OK because God forgave her. It seemed like she'd been in counseling. Clearly NOT working. I kept thinking about that child today. I hope the father does right by her.

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  12. ellen i have read that blog and it left me uneasy and i can not help but wonder if the mom is a little biassed because the daughter is part black

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  13. So much intolerance I just saw a picture on Facebook a spoof of call me maybe making fun of Tourette's. A friend shared it if she & her soul-mate don't remove it not sure if I want to still call them friend :(

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  14. And THEN this morning I woke up and read about a DJ mocking a woman with special needs. Sigh. http://www.disabilityscoop.com/2013/02/04/dj-mocking-disability/17233/

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  15. I am so glad you wrote about this. The one day we were in the mall. My husband & boys were ahead of me & my daughter. Ashleigh was trying to catch up to them. She yelled "Wait for me daddy!" Someone from over there yelled the same thing as Ashleigh. I yelled "That is not nice!" I was not happy at all. Ashleigh does not run like kids her age. Intolerance is all around us. I still do not know who said it. I would had said something to the mother's face if I could had found who said it then caught up with my family.

    I read about a young man doing an Intolerance Fair. http://www.indiegogo.com/projects/the-tolerance-fair?c=home

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  16. This just breaks my heart. My dear friend's ex-husband treats his daughter with special needs like...shit. He doesn't take her on family vacations and calls her retarded. Her father!!! It's upsetting.

    With Olivia, there are many instances. The gawking like she's contagious is the worst. She can feel that...deeply. I just try and remind myself that most people are good. It's not always easy though.

    I mostly feel sorry for these people because they are missing out on possibly the greatest joy in life.

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  17. Social media shares, the good stories, but I feel now more than ever there are the bad stories coming to light. In some ways I appreciate that its no longer all about "Down's Syndrome Student scores final basket!"

    Having an older brother who has an intellectual disability, my family is fortunate to live in a pretty open-minded town due to a strong, inclusive special ed program. But people still surprise me, especially the PTA mother who recently took it upon herself to go into my brother's place of employment at the local florist to tell the owner to change his hours. Why? Because he walks past the local elementary school on his way to work and she thought he was suspicious. Even after, the principal of the elementary school explained that he was my brother's former special ed teacher!

    Some people just make me shake my head and think we have more speducating to do!

    Thanks for another great post.

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  18. One other things I'm concerned about, this evil step-mother woman is pregnant and drinking?? If she can't tolerate a child with special needs now, how will she tolerate her own child with developmental disabilities because of her own stupidity drinking during her pregnancy?

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  19. I described basketball, the bane of my existence, as an earthquake with a moving epicenter and this girl said that I was being weird. She is the one who is weird! Lol I hate it when the ground is shaking. I have Asperger's Syndrome and the shaking of ground will trigger a fight or flight response. I choose flight and people think I am crazy. I hate it when people are such ignoramuses.

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  20. We run into some truly amazing people when out but also have had some dreadful experiences with intolerance. I will never forget the little boy at our children's clinic who spotted my little guy and started hollering at the top of his lungs "look, look, thats gross". The mom grabbed him and took off around the corner before I could pick my jaw up off the floor to respond. My little guy is non verbal and non mobile but quite smart. He looked up at me and started to cry. I told him that boy was very naughty and his mommy and daddy aren't teaching him how to be nice. I sometimes get comments and some don't agree but my little ones ipad now has a board so he can actually say "they aren't being nice", "they are staring", "they are making me feel bad". I should add he absolutely knows the difference between curious stares(he will grin and try to say hi) and the cruel rude stares and behavior.

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  21. It seems that the battlecry for this blog is "Tolerance!", which is great, BUT is tolerance only for kids with special needs? What about over-taxed parents who are a bit too honest on their blogs? Can we be tolerant of them as well? If all of you have never had a "I wish my child didn't do ______", I commend each and every one of you. If you have, even once, give her some grace and support the efforts to get her help-- be that a GOOD pshychologist, a family councelor, parenting classes, or just a place where her sweet girl can go so she can get a break every once in a while. We don't have to like the behavior, but verbal attacks do not get us anywhere. You don't have to tolerate the behavior, but, you should tolerate the mama- crying-out-for-help behind the behavior.

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  22. I kinda wish I had a few more "intolerant" people in my life just so I can teach them... And so that maybe I wouldn't get so angry when I read or hear about other kids :/ I absolutely love that everyone around Charli loves her, but I'm scared for when school starts... I'm already "that" person who will tell a complete stranger not to use the R-word.

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  23. I have experienced alot of staring. Sophie gets exctited and makes very high pitched sounds and will hyper extend her legs. I try to ignore it but it gets under my skin.

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  24. My husband is so intolerant of our special-needs now-adult daughter. It just pisses me off daily. I don't even know where this holier-than-thou attitude of his is coming from. He thinks he does no wrong, but everything she does is wrong. Yes...I am frustrated about it.

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  25. Anon why not talk to him about it?

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Thanks for sharing!