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Thursday, April 26, 2012

Dear World...

Dear World,

Each time I write something I never know if anyone is going to read it. Right now though, I very dearly want this to be read because I've never felt so strongly about something. Yes, right now there is a video circulating the internet regarding a teacher bullying a student and I have never been more sick about something than that, and it furthers my passion to continue to raise awareness and understanding.

So why do I write this to the world? Because it is up to you, the world, to make the difference! We on the spectrum often times need support. And sometimes we are unable to speak for ourselves. With that being said, we can be easy targets. There's a misconception out there that people on the autism spectrum don't have emotions or feelings and this couldn't be farther from the truth.

I'm in the midst of a nationwide tour I have met so many amazing teachers and professionals! They are absolutely amazing, but it only takes one. Yes, it only takes on person to cause major harm. And for us on the spectrum we can't simply share our emotions and time doesn't "simply" heal the wounds. Take for instance a thing that happened to me last August.. That event was very much a bully situation and I have never felt more insignificant and powerless in my life. Thankfully that night my dad, and bowling team, were there for me in all the right ways.

Right now we are in the middle of Autism Awareness Month and as the numbers of autism increase so too, I fear, will be stories the likes of which only the word "horror" can describe. To the unaware person they may think that the non-verbal person isn't listening or doesn't care how they are treated. Sadly, the person very much does and is unable to do or say anything. Imagine that! Imagine living life for one minute in a situation that you can not say or do anything that will alert the world to the fact that someone has mistreated you. No words, no points, nothing.

So world, what are we going to do about it? I've written many posts regarding using the terminology of "the one" but in this instance I want to say we need to "fear the one." Yes, we need to fear that one person who is going to take advantage or bully the person on the spectrum. Since I feel that the concept of time is different for us on the spectrum, the abuse, the bullying, or whatever it may be is not simply going to be forgotten. Even if 99% of everyone is compassionate and understanding we still have 1% that can cause great harm.

As I said, I feel strongly on this; maybe too much. I do what I do to raise awareness and understanding because "understanding is the foundation for hope." I felt hopeless and powerless for many years after finding out about my diagnosis and during those years I don't know if I would have recovered from any sort of bullying episode.

What I am trying to get at is that you, the world, need to help us. Sometimes we can't speak, sometimes we can't state our needs, but if we are in trouble we need your help. This goes for all ages! At one of my presentations I heard a story about a class that had a person with autism in it and one student tried to pick on the person with autism but the rest of the class would have none of it. This is what we need world! And I'm not saying we don't have it, but all it takes is one event to leave a unfortunate scar.

So can we do it world? Can we continue to educate the world and create more awareness of the needs of us on the spectrum? Can we minimize the horror stories? The end of Autism Awareness Month is fast approaching and when it passes will the world tuck us away and wait until next April before they open their minds? My passion is bring and end to this, but I'm just one person. So world, one last question: if a situation comes up that you can help a person on the spectrum will you continue on your way or will you see to it that right wins out? If you are the type that will see to it that right prevails you may not be thanked by the person, in fact you probably won't, but trust me when I say that the amount of thanks being felt by that person on the spectrum will be at a level you can't imagine. So world, please be our advocates when we need one, don't turn a blind eye, and never let yourself fall into the 1% I mentioned earlier.

12 comments:

  1. Dear Aaron! What you write, is so important! In everyday interactions with friends, family, colleagues, I try to spread information about my son's condition, AS/Autism, but find little room in my life right now to contribute more. Still, I am hoping that posting this to my facebook friends (as my husband did to his friends) might prompt at least some people to read, to understand more. I'm grateful that you ar blogging!

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  2. I have been called a "helicopter parent," and a "hover craft" parent. I don't know if you remember the Air Florida flights that crashed into the Potomac after take-off from National Airport (now Reagan International) in Washington DC 30 years ago on January 12, 1982. The drama was played out live on TV as a helicopter hovered over the water attempting to rescue people in the freezing waters. While the skills of the pilot were indispensable, it was an office assistant from the Congressional Budget Office who made a life-long difference in the life of Priscilla Tirado.

    Tirado was too tired to hang on to the life ring dropped from the helicopter. Hundreds of people stood on the shore watching. Lenny Skutnik stripped off his coat and boots and, in short sleeves, dove into the icy water and swam the 30 feet out to assist her. He succeeded in getting Tirado to the river shore, from where Tirado was subsequently taken to the hospital, saving her life.

    A "helicopter parent?" Damn right. There are times that parents of children on the spectrum have to be. A "hero?" No, not quite. The real heros are those who Aaron work with at TouchPoint, who, at times, have been called on to lift him out of situations where he cannot swim. To these "heros" this "helicopter dad" says thank you.

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  3. I saw that video, and spread it to my facebook page to encourage others to spread it to make people aware of just what can and does happen. My 14 year old son is aspergers. He is a WONDERFUL young man, but has suffered the bullying of his teachers, as well. We didn't know he was ASD at that point, however, I pulled him from that school, and changed districts. He next teacher was an angel. She helped us get his correct diagnosis, all of his assistance in place and worked everyday to help him feel like he was part of the class, not an outsider. He still talks of Ms. Cottingham and how awesome she was. THANK YOU for all you do, Aaron. Spread the word!!!

    And Jim...you bet your sweet hiney!!! Be that parent who hovers, cause there are no second chances at rescue sometimes. God Bless you!

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  4. This awareness is just what the world needs to listen to, take notice of, understand and truly realise how wonderful those on the spectrum are. My child was diagnosed AS at three years old but we were aware from birth. Autism runs in the family, it wasn't caused by MMR or any other of the reasons that people can throw at me as a parent, and I often have to put up with comments, especially now he's 12 and if he gets truly upset in public places, but I am troubled, always, by the actions of those around me. I've been called a bad parent, been told I should smack him, etc etc but I wish on all of those people that they could spend a day in my sons shoes. Would they cope with the fear, the anxiety, the nasty comments, being pushed around, called untold names, ridiculed the list goes on? I don't think so. There needs to be more awareness in schools, especially in the early years, and more training for the teachers and assistants, employers etc etc so that what they can actually see is a very skilled, loyal, hard worker and someone who can be completely trustworthy. No matter where I go I make sure that those who make snide remarks, give looks of disapproval, ridicule and bully get an educated speech on Autism and get handed a card to explain what Autism is. Handing a card out is the best thing ever as it is quite amazing how someones jaw can drop and how quickly an apology comes. I'm not interested in an apology but I do want my child to live his life the way he chooses too without the ignorance and misunderstandings of those around him.
    Keep up the good work and I'll be visiting again for updates. I will try to get my boy to read it too, as he loves to read, and think it will help him in the future to follow someone who is older and wiser in years and who he can look upto as well.

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  5. Thank you!

    We enjoyed meeting you and hearing you speak in Topeka, KS. Thank you for your message of hope.

    I don't know how to write what I'm thinking.... But I wanted you to know that I am reading... And sharing with my family and friends what you have written.

    Travel safe and keep talking and sharing!

    Blessings

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  6. Dear Aaron, thank you so much for all that you are doing to bring more awareness to the world. You are doing it! To your dad, the self proclaimed "Helicopter parent"; you are doing an amazing job!

    My 16 year old son, Ben was relentlessly bullied all through middle school and at the beginning of high school. I am grateful that he had the courage to tell us and his vice principal about every occasion. Thanks to his VP, the bullying at school has now stopped. Sadly, a few weeks ago, it came to my attention that he was being bullied online in a forum that was Ben's "Kansas". He had been a member of the transit forum (for people with a passion for busses and trains), for over 3 years. When I found out about the bullying, I signed in on his account (with his permission, of course). What I saw there horrified me.

    These people, whom Ben considered his friends, were unbelievably cruel to him. They publicly humiliated him because of his "quirks". I spent two days trying to educate them about AS and ASS, and trying to explain to them that his "quirks" were part of who he is.

    They went on to tell me that I was a bad parent, that we were using Ben's AS as a "crutch" for his behavior. Understand that Ben was never cruel to anyone, never rude. His "crime" was going into a parking lot of a trucking company on a Sunday (they were closed), so that he could take pictures of parked buses through a chain link fence. They said he was trespassing (and I suppose he was, though there was no sign saying that he could not go on the property). This incident took place over 6 months ago, and they were still harping over it, even though he swears he's never done anything like that since. His other "crime" was giving a report of a bus being in a certain place, and it was not. It was a simple mistake, but to the forum...completely unforgivable. For this he was publicly humiliated, called names and disowned by the "community".

    After days of trying to help them understand AS, and being insulted repeatedly, I came to the conclusion that the only way I would be able to protect Ben from these people was to have his account permanently deleted. I did so (again, with his permission). Now, I am faced with trying to help Ben understand that these people were not true "friends". He is resisting a great deal and is trying to make ME understand that they are his friends. I guess we're just going to be butting heads on this for a while. :)

    As for the article about the teacher and aid. Their behavior was disgusting, to say the least. I can't wrap my head around the fact that one of these women still has a job teaching children. My heart goes out to the child's dad. He already has a tough road to walk, and yet he is now publicly advocating for his son (and also for all AS and ASS children). Bravo for Helicopter parents! And Bravo for the the children who have made us!

    Thank you Aaron and Jim, for sharing a bit of your lives with us. People ARE reading, and hearing your and little by little, helping parents and AS children understand more about those we love and about ourselves.

    I just received your book and am reading it now. My son will read it next, and after that, it will be passed on to his grandparents and the rest of our family.

    Lynn (Proud Helicopter Parent)

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  7. Terrible stories... The one in the blog post, but also the ones in the comments...
    @Lynn: I was very touched by your story, since recently I've been bullied by some people in my Kansas too. This has hurt me to the very core and I became very isolated. Other people started pointing out to me that there are more people who are fan of the same thing as I'm a fan of. They were right. I found more people supporting me within this Kansas and I told them about what happened. Since they are within the same subculture, they now watch out for me.
    Maybe it would help to find your son a new forum about busses and trains? I know it can be a harsh culture. My ex-boyfriend is a fan of public transport too. He has found some true friends within there and they started their own, safe, forum. Unfortunately this forum is Dutch, otherwise I'd point it out for you.
    I'm just saying, help your son find the true friends within his Kansas. Once he sees how true friends can be, he'll probably see the difference. (or at least I hope for his sake)


    Like I've said before: I have been bullied for 13 years straight in school. It's very scarring. I've managed to find my true self back and be confident. But whenever I meet bullying people, I still cringe and relive every single year of my bullying time.
    Some people say bullying makes you stronger. Well it very well doesn't. It's bad and it should stop right now.
    I have spoken openheartedly to some bullies. They said they felt they had to bully, because they were afraid of being bullied themselves.
    I told them that everyone is afraid of that and by participating they keep the chain going.

    Please. If you are a bully. Don't be a part of the problem, no matter how scared you are. You're inflicting the very pain you're afraid of onto others.
    If we all decide not to be a part of it, the bullies get less and less power. Let's all create a society where bullying isn't accepted.

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    Replies
    1. @Issha, Thank you for your comment. Too bad that Ben doesn't speak Dutch! He does speak French and English though. :) Maybe he can add another language! LOL

      He's doing ok with the situation at the moment. One or two of the boys on the forum have written him privately and told him that they are on his side. So he does have a couple of true friends. He is continuing with his fanning, despite the set backs, and will likely be getting together with his two buddies to do so. As far as forums go, this is the second forum he's had problems with so he's not eager to get into another one. And who can blame him. In the meantime, he's expanding his photography subjects to Urban and Nature photography as well. He does love to take pictures.

      You are so right about the lasting scars of bullying. Unfortunately, it seems to have become a sad fact of life now. Bullies come in a shapes, sizes and ages, even in the workplace. The best we can do is help our children to recognize them and to know that they (the bullies) know nothing of real life and real people.

      I believe one of the hardest parts of presenting AS to the world is that unlike other issues, this one is invisible. I once butted heads with a teacher at Ben's elementary school about movie watching. Ben has extreme sensitivity to people laughing. He can't explain it, it's just the way he is. So on days when the teacher was rewarding the class with a movie, I would often ask for the teacher to allow Ben to go to the library instead. She told me once that Ben "needed to get over this" and that he would not do so if we continued to give him an "out" every time a movie or a situation would come up that may induce laughter by other people. My response to her was this...

      If a child was in a wheel chair, would you "make him" get out of it and climb a ladder? I told her that just because his disability wasn't visible, it didn't make it any less real.

      PS: for the record, I don't consider AS as a disability (neither does Ben). Frankly, I hate the word "disability" because so called "disabled" people are simply differently abled. There should be no "dis" in ability, so Ben and I call it "THISability" instead. How many people out there have the abilities that many AS people have? How many people out there can have pinpoint focus on one particular thing like AS people can? THIS is their ability! It needs to be embraced as such!

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    2. @Issha, Thank you for your comment. Too bad that Ben doesn't speak Dutch! He does speak French and English though. :) Maybe he can add another language! LOL

      He's doing ok with the situation at the moment. One or two of the boys on the forum have written him privately and told him that they are on his side. So he does have a couple of true friends. He is continuing with his fanning, despite the set backs, and will likely be getting together with his two buddies to do so. As far as forums go, this is the second forum he's had problems with so he's not eager to get into another one. And who can blame him. In the meantime, he's expanding his photography subjects to Urban and Nature photography as well. He does love to take pictures.

      You are so right about the lasting scars of bullying. Unfortunately, it seems to have become a sad fact of life now. Bullies come in a shapes, sizes and ages, even in the workplace. The best we can do is help our children to recognize them and to know that they (the bullies) know nothing of real life and real people.

      I believe one of the hardest parts of presenting AS to the world is that unlike other issues, this one is invisible. I once butted heads with a teacher at Ben's elementary school about movie watching. Ben has extreme sensitivity to people laughing. He can't explain it, it's just the way he is. So on days when the teacher was rewarding the class with a movie, I would often ask for the teacher to allow Ben to go to the library instead. She told me once that Ben "needed to get over this" and that he would not do so if we continued to give him an "out" every time a movie or a situation would come up that may induce laughter by other people. My response to her was this...

      If a child was in a wheel chair, would you "make him" get out of it and climb a ladder? I told her that just because his disability wasn't visible, it didn't make it any less real.

      PS: for the record, I don't consider AS as a disability (neither does Ben). Frankly, I hate the word "disability" because so called "disabled" people are simply differently abled. There should be no "dis" in ability, so Ben and I call it "THISability" instead. How many people out there have the abilities that many AS people have? How many people out there can have pinpoint focus on one particular thing like AS people can? THIS is their ability! It needs to be embraced as such!

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    3. Wow, just replied to a post and it totally disappeared! LOL... ok, let's see if I can remember it all.

      @Issha, thank you so much for your comments and suggestions. Ben has already been booted off two such forums, so he's pretty much given up on them now. However, he has found that two of the young men on the forum (who did not participate in Ben's humiliation) have contacted him privately and are on his side. So, he has found a couple of true friends.

      It's too bad he doesn't speak Dutch! I'm sure he'd be happy to join the forum your boy friend is on! Maybe I will suggest he add Dutch to his repertoire and then he can be tri-lingual! LOL (He speaks French as well as English fluently).

      For now, he's contenting himself with fanning (riding the buses and trains) on his own or with his two friends. He's still taking photos, but now he's expanded his vision to Urban and Nature photography. He has a magnificent eye for a great photo.

      As to your comments on bullying. Yes, it leaves long lasting scars. I know this from experience, having been an overweight child in a cruel world. I still hear the jeers of my peers in my head sometimes. Sadly though, it seems to have gotten worse over the years. Maybe this is a product of media and society in general, but it just seems to get worse by the day. The best we can do it to teach our children how to recognize the bullies for what they are (cowards and ignorant people) and to talk to others who are in power to change the situations (parents, teachers, bosses etc.). Bullies come in a shapes, sizes, and ages. They are no longer limited to schools and playgrounds, but are now sometimes our teachers and even fellow employees and yes, even bosses and superiors.

      You're right, we need to create a society where bullying isn't accepted. But we've been trying to do that for centuries with racism, and we're still seeing far too much of that as well. The best we can do (and that our children can do) is make bullies public. We need to stand up for ourselves and make them public. (much as the dad in the video in question is doing).

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  8. OOps, see, I forgot something! LOL (never would have happened had I been Ben!)

    I was going to say that AS is an invisible condition. I once butted heads with one of Ben's teachers over a movie. Ben has an extreme sensitivity to laughter. As a result, he cannot sit in a movie theater to watch a movie, or even with us, his parents, to watch TV. If we laugh, he becomes extremely anxious and when he was young, he would often yell and lash out. As a result, when ever we knew there would be a movie shown in class, we would give Ben a note to be excused from the movie so that he could go to the library. Well, there was a surprise movie one day that was meant as a reward for the class.

    Because I work in the school system, and at the time I was working in Ben's school. When I walked into work, I saw Ben kicking and screaming in the hall way as his aid was dragging him down the hall towards the class room. Mamma Bear kicked into high gear and I was there in a flash. I held him to calm him down, while the aid looked at me like I was a three headed monster. Once Ben was calm, I sent him off to the Library and took his aid aside. She started spouting about how Ben needed to "get over it and to learn to live with situations like this". I told her flatly that she was full of (something that is brown and smells very unpleasant). I told her that Ben didn't "need" to be able to watch movies. He needed an education. I also told her that she had no right dragging him anywhere. Then I asked her this:

    If Ben was in a wheel chair, would she force him out of the chair to climb a ladder? If Ben were blind, would she take away his cane or his seeing eye dog and have him walk to school by himself? She got the point, I think. She never forced him to attend a movie (or talent show) again.

    Hover away, parents! Hover away!

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  9. What kind of professionals have you talked to... I am just curious? Maybe it's just me, you will really enlighten professionals if you can use what they know to teach them a thing or two about autism.

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