Monday, March 29, 2010

Autism awareness and the Smockity flap

3/31, Updated to add: Smockity has posted an apology to anyone who was unintentionally hurt by her original post.

It seems that while I have been blissfully posting about my son’s wonderful classroom, much of the rest of the autism blogosphere has been on fire in response to a post written by a blogger called Smockity, who writes at Smockity Frocks.

First, let me offer this caveat: I know next to nothing about Smockity. I have read just one of her posts. My understanding is that she has no connection to autism and that, in fact, she had no idea that she was writing about an autistic child when she wrote a blog post called "In Which Smockity Considers Jabbing A Ball Point Pen Into Her Eye," which has since been removed from her blog, but is cached here.

In brief: Smockity's post was, I think, intended to be a humorous account of a visit to the library, during which she and her children encountered a grandmother with a child who bounced on her toes, flapped her hands, and used perseverative language. Most of us in the autism community recognized this child - and this grandmother - instantly. Smockity did not. Her post unfolded as a diatribe against the sort of parenting (or grandparenting) that yields rude, self-indulgent, ill-mannered children.

Much has been written about the post, the response, and Smockity's response to the response. Both Squidalicious and Liz Ditz have posted links to responses that reflect outrage, disbelief, and the feeling that I had when I read Smockity's post - a sinking recognition that perhaps all those times when Bud has struggled in public and I've left a place red-faced and anguished, afraid I'd been judged or mocked or disdained by the people around us, I'd been right. As I read, I remembered why I stay home so often, skipping the trips to the places I want or need to go, simply to avoid the potential of having to manage a difficult situation under public scrutiny.

But, again, I don't know Smockity. I don't know her motivation for writing the post and I don't know how she feels right now. She has replaced her original post with a new message, in which she says that she won't respond to attacks on Twitter, e-mail or blogs. Let me be clear - I don't intend to attack Smockity with this response. But I also try to put myself in her shoes.

I'm certain that there have been times in my life when I've said something that I thought was humorous, but which actually offended someone. There are times when someone has called me out for being thoughtless or insensitive and I have reacted defensively. There have been times when I should have said I was sorry, but - because of my defensiveness, or my pride, or my embarrassment - I didn't. But I would like to believe that, in each of those cases, though I was unable to step up and own my mistakes, I spent countless hours in private reviewing them, imagining do-overs, and preparing myself to act differently in the future.

I'd like to believe that Smockity is doing that now. If I were her, even if I said I wasn't going to read the blog posts that were written about me, I know that I wouldn't be able to stay away. I'd read them privately, and I'd seethe, or I'd cry, or I'd scream, or I'd feel really, really bad. So, I'm writing this post in the hope that Smockity, or others who saw themselves in her words, will read it and think.

My full-time job is in college student affairs, and there are two things we talk about a lot in my department: utilizing teachable moments and providing opportunities for student learning. We recognize that students may not take advantage of the opportunities we provide, but we provide them all the same. We look for a moment to present itself, then we try to shape the experience or the conversation in that moment to meet a student where she is and to help her to consider a picture that is just a bit bigger.

This feels like a teachable moment, and I'd like to provide an opportunity for some learning.

You see, I saw myself in the grandmother in Smockity's post, as she stood with her granddaughter, waiting for Smockity's children to finish on the computer. Smockity writes,

"The girl never left her position at the computers and continued bouncing,
flapping, and proclaiming, “I’m waiting patiently! It’s almost my turn! I’m
being patient, Grandma!” to which Grandma would reply, “That’s right,
Preciousdarling Angelface, You are being very patient. Just one more minute.”

This was repeated… repeatedly.

Do you ever get the distinct feeling that, although a speaker is not addressing
you directly, the message that is being spoken is intended just for you?"

Of course, I can't know what the grandmother's intentions were, but had I been in her place, I would have done the same thing. Through my inflection, my repetition, and my use of language that seemed both intentional and unusual, I would have been trying to send a message to Smockity. My message would have been something like this:

I know that your children were at the computers first, and I know that I have no right to ask them to step aside and make room for my child, but here's the thing: you have NO IDEA how important this activity is to him, nor how hard he is working at holding it together right now. Your children look delightful and I'm sure they enjoy playing on the computer, but I have a hunch that this might be one of many things that they enjoy. I imagine that your children play with friends, that they enjoy board games, that they have a variety of interests, and that if this computer were not available to them, they would be able to think of ten other things they'd enjoy doing just as much. But, I'm telling you, that is not the case for my child. My child has been talking about THIS game on THIS computer at THIS library all week. And by that, I don't mean once a day all week. I mean from the moment he has woken up until the moment he has fallen asleep, he has talked about nothing but THIS game on THIS computer at THIS library. Our day, our week - it seems, even, our life - has been built around this moment, and I have to tell you: if this computer is not available to him, he will not be able to think of ANY other thing he would like to do, because right now, at this stage in his life, he does not play with friends, he does not enjoy board games, he does not have ANY other interest beyond THIS game on THIS computer at THIS library. And I know that's not your fault or your problem, and I know that your children have every right to keep on playing until they're finished, but I'm BEGGING you, PLEASE - can you help me out here? Can you intervene? Can you suggest that maybe they could finish up in five minutes, ten minutes, SOME predictable time frame so that I'll know how long I have to manage this situation and help this child hold himself together? Please?

That would have been my message. But my WORDS would have sounded something like this: “That’s right, Preciousdarling Angelface, You are being very patient. Just one more minute.” Repeatedly.

And the flapping. Let me tell you about the flapping. Bud's flapping provokes two simultaneous, equally strong reactions in me. The first is trepidation, because Bud's flapping in public instantly presents him as "other" to the strangers around us, as this child's did with Smockity. But the second is delight, because when Bud flaps, I know that he is experiencing genuine excitement and joy. Bud's flapping is a physiological response to emotion, and he flaps because his hair-dryer brain processes excitement and joy differently from our toaster brains. Bud flaps with excitement the same way that people laugh when something is funny - automatically, immediately, and reactively. Bud could no more keep from flapping when he's happy than I could stop my stomach from growling when I'm hungry.

That's what I'd say to Smockity, if I had an opportunity to say something to Smockity. But she may not come over here. She may let the opportunity pass.

So, here's another idea. This Friday, April 2, is World Autism Awareness Day. Autism mom and blogger Jean "Stimey" Winegardner has written a measured, thoughtful response for The Washington Times, which is directed to people who don't have direct experience with autism. Let's pass it on to the people we know, and ask them to pass it on to the people they know who don't know anyone with autism, but who may encounter them in the supermarket, on the playground, or in the library. Let's give people an opportunity to think about their reactions before they are forced to react.

World Autism Awareness Day. It's a teachable moment. Let's provide an opportunity for a little learning.

48 comments:

Kim said...

YES, YES, YES. Very well written. I cannot even address the whole flap on my blog. Am so glad that others with much more talent than me can.

j* said...

"I have to tell you: if this computer is not available to him, he will not be able to think of ANY other thing he would like to do, because right now, at this stage in his life, he does not play with friends, he does not enjoy board games, he does not have ANY other interest beyond THIS game on THIS computer at THIS library." And it hurts me so much that he feels this way, and that I can't seem to help him expand his interests at this point in his life, and I would do *anything* to make his and my life easier for just a few minutes. He would be so happy if he could just do this one thing, and your children have so many ordinary every day things they are able to enjoy. I have no idea what it would be like to be in your shoes as you watch me struggle and not know what to do, but pls know that I am embarassed to ask you to help me out with this, because you owe me nothing, and your kids are typical, how could you possibly understand? But it would be such a help to me if you smiled to show me you get it and if you gave one of your girls a nudge and asked them if they would mind helping you with something for a minute so the computer would be free. I would gladly tell you we would be 10 minutes on the clock, and thank you and your daughter for being so gracious. And I would breathe a sigh of relief that there would be no outburst, no meltdown, no complete incomprehension from my son, about why he has to wait longer than he is able. And no one would be embarassed or angry and the world would stay upright for a few minutes more. But I know that's a lot to ask. So I will hold my breath and see how it all unfolds.

(thank you MOM-NOS, for letting me spill all that, I've been thinking about it all day.)

kristi said...

Oh man, this makes me really sad. Ignorance, pure ignorance. We as adults should be able to understand so much more and teach our children tolerance. I have gone "OFF" on a kid at daycare and told him maybe he should ask his mom what AUTISM is. (the funny thing is he has a brother who is disabled but he didn't recognize TC was, autism IS the invisible disability a lot of the time.)

MOM-NOS said...

j* - YES! Exactly.

Daisy said...

Awareness being the lowest form of knowledge -- it is sad that Smockity didn't even possess that level of awareness.

Mini said...

This was an amazing post, I really liked what you have to say and wish I could express myself just as well. :)

conuly said...

What really gets me, reading the original, is that that little girl wasn't even being *rude*. Talking about waiting patiently isn't rude. For a four year old - ANY four year old! (and that's assuming she wasn't a tall and vocal three or even two year old, of course, which I've seen often enough) - that's pretty much as patient as they get.

And besides, she knew it wasn't going to be "one minute" (not like that phrase means much to most children anyway) from the start, so why didn't she say that at the beginning. "Oh, you know, actually they just got on right now, so they might be a while longer, but we'll be sure to fetch you right away when we're done". Not only is this exactly what I would've done, but this is exactly what I *have* done in the past... and I don't let my older niece (who is almost seven) hog the computer if a much younger child is waiting. It may not be fair, but she and I know you make life easier for small children, because it's harder for them to wait.

Island Mom said...

Well said. but i read the original post from Smockity and am not so convinced she is so remorseful. Her whole post was so disturbing on so many levels simultaneously, i wouldn't even know where to start. I just pray she's humbly taking this as a 'teachable moment' to teach her own 7 children about recognizing and accepting differences in other children.

Although i would not put money down on that.

Navi said...

Conuly - that is what I've been thinking. That is an extremely normal response for any child age 4 and younger. As a mom of three rather tall children, two of whom have advanced speech I am always running into people thinking my kids are much older than they are

Pia said...

Ok, so, unknowing of the whole Smockity events until tonight, I have been doing my catch-up reading.

This makes me so sad. It fills me with dread and grief.

I hope you are right, and that she is spending some time in self reflection. But the truth is, does anyone want to confront ugly truths about themselves? The sense that this is just humor is weird to me... regardless of whether this child was on the "spectrum" or not, her post was more about contempt disguised as humor. My kids and my parenting are better than your kids and your parenting.... the sort of prideful judgement with a tinge of "Haha, how funny is this?"

Does someone who is self reflective and compassionate do that?

I hope that she does think, look, and consider all of this. I hope she does not nest within a group of "yes-friends" whom pacify her into not explaining or reflecting and learning.

But I will say, my faith is not strong enough in this area.

abby said...

As usual, you are right on target. BD (before our diagnosis), I used to beg parents (with my eyes, not words) for them to let Hallie have a chance on the baby swing at the playground because I knew that the meltdown and crumpling was imminent. And many parents, perhaps because Hallie was younger back then, were happy to comply. They understood what was coming down the pipeline.

We are lucky that, for the most part, Hallie doesn't have huge meltdowns in public over most things, but those things that provide her with singular joy make her stand out because of that joy---that's when we see the stimming (spinning, hand flapping, constant movement). And I, too, greet this with trepidation. I'd rather she not spin and flap, to be honest, but I do want her to be happy. And her wiring is different than ours. She can't express her joy in the same way that we do, and so she does it Hallie style. And the people who love her have come to understand that. Now if everyone else would just refrain from judgment we'd be getting somewhere.

Martian Momma said...

Wow, I didn't even know about Smockity til I read your blog - but that's pretty much what I'd expect from a mother of 6 girls. She is fortunate she only has one boy who is probably kept in line by his sisters.

I have three boys, two of whom are at the AS end of the spectrum. If my middle boy had been at the library that day, there would have been worse behaviour than what she noted to write on. For more on this see my blogposts "Napalm Sunday" and "Iggle Piggle's Right To Bear Arms" at
www.martianmomma.blogspot.com

I thought I was being paranoid about how people perceive us in public but obviously I wasn't.

Explains why we don't go out more.

Royal Ranch said...

This is disturbing to me on many levels. I mean how many times does she have to mention her Bible? Maybe she should take some lessons from the good book that she is reading. I agree with Pia that this was a post about how her parenting style is better than another, and it failed miserably. The good thing is that it really stirred things up just in time for awareness day and it really made me all that more committed to opening my ranch up to kids that can flap, flap, flap away! Meant to be humorous-Ha!!!! Please, please, people do not keep your kids at home, we are not all like that!

Professor Mother said...

This is the comment that I left on the Washington Post site... (and just between us... I read over Smockety's site- and I was so jealous that a) she has TIME to write about cute desserts and crafts and b) that she has ability to MAKE cute desserts and crafts. In our house- well, we have other things we have to deal with.)

Phew- amid the din, I think it's so important to teach everyone to ask "What can I do to help?" If Smockety had stepped in to ask the grandmother that question, rather than sit there and stew and make judgements, things might be different. If parents of children with autism had asked "How can I help her understand where we're coming from?", things might be different. It's true that "helping" can often get you into trouble, if your "helping" is your definition of help, and NOT the other person's. "What can I do to help?" allows the other person to have the power, the control and final decision.

I have both views- I am a parent of a child with autism and I taught elementary school for years. Now, I teach teachers. There are an awful lot of spoiled, out of control kids out there whose parents have no idea what they did wrong- There are waaaayyy too many kids who hear nothing but "sweetie cakes" when they need to be told to STOP. There are also an awful lot of children who have behavioral differences that have nothing to do with parenting. They can look an awful lot alike in a public place (although flapping is a give away- kids do not flap because they are spoiled). As a teacher of teachers, I work with future special educators to ask "What can I do to help?". Sometimes they ask themselves, and sometimes they ask the parents. Sometimes, they ask other teachers. But they ask. And so to all of us- the readers, the ones involved... "What can we do to help?"... The point isn't the answer- the point is the question.

*m* said...

Don't know what bothered me more: the original Smockity post or the laughing and affirming comments many left in response. I hope that ultimately, it was a wake-up call to the author and some of her readers. I hope. It was certainly a vivid reminder to me about how much remains to be taught, and learned, about autism. And about compassion.

Robin said...

I wish I hadn't gone over there and read her post. Or more to the point, I wish I hadn't read her post and all those pages of comments.

Whatever happened to compassion and giving someone the benefit of the doubt before judging?

Signed,
Another mom whose often wondered whether all those eyes on me were really as judgmental as they felt...

Geoz said...

Judging the parenting of others is such a popular sport. It seems to be epidemic to believe that one parenting experience is like another - unless it looks harder. If it looks harder, then "they" must be doing it wrong. Unfortunately, after seeing this epidemic practice of judging other parents, I think I would find it hard to accept a note of correction without some defensiveness.

Perhaps this defensiveness is something I share with Smockity. Perhaps this is why she has the mantra of "not my child, not my business." But this flies in the face of another value I have which is that there is a village of people who will (whether I want them to or not) help raise my children. Coaches, teachers, storekeepers, and preachers all will have contact with mine and can't help but influence who they are. My mind is reeling. I have to stop.

Anonymous said...

I thought the original post and all of the comments were very interesting. I'd like to say upfront that I do not know any autistic people, so I was not aware that flapping could indicate that. I'm glad to have learned that here.

I would just like to suggest that we may not always recognize that other children at the computers, swings, whatever, have their own reasons for "needing" to be there. A child may have just come through a difficult operation or medical treatment, and may have been promised that experience. Or, there may have been a sad event in the child's life, and this outing was meant to distract them a little bit.

I say this only because the idea of tolerance and understanding need to go both ways. An autistic child may or may not be easily recognizable but children with other personal challenges might not be easy to spot. So please be careful in assuming someone is "typical." Their situation may be as unique as that of your child, but possibly not as clear to the untrained eye.

Thanks for the education I have received here, it's been very valuable to hear so many loving parents share their stories.

PS: I'm not trying to be anonymous but I'm having trouble with the posting. My name is Jen.

MOM-NOS said...

Your point is a good one, Jen - and not just with children. Every one of us has a story, and in many cases, if we knew each other's stories, I think we'd have a lot more compassion and be less quick to consider jabbing ourselves in the eye with a ballpoint pen. Thanks.

Stimey said...

This is a wonderful post with excellent comments. Thank you so much for including my post.

Nicole said...

Bravo!

And thank-you for adding the bit about handflapping. Most other accounts I've read haven't fit ours- Chris only handflaps when he is super duper happy and excited.

j* said...

Sorry -- back again -- mostly to address Anonymous (Jen), who was so thoughtful in her comment. Many of us are upset not really because of Smockity's thoughts/actions etc. while at the library, or that we felt her children were less deserving of time at the computers (because Jen was definitely right about that, we can't presume to know what's hapenning in another's life and what is important to them at any moment), but it was Smockity's comments and reactions after some of us spoke up and clued her in that the little girl may have been on the spectrum and she and her grandma were probably handling the situation the best they could etc. As I think somebody mentioned here, it was Smockity's lack of compassion after the fact, no?

SpedDoc said...

Thank for your thoughtful and thought-provoking post. I work with children with autism on a daily basis, helping them to communicate.
You made me consider if some of my own blogging is insensitive or offensive. I hope not. "My" kids give me so much joy; and yes, sometimes they do funny things that make me laugh. But usually, those things only serve to endear them to me.

Anonymous said...

Thanks MOM and j* for your posts. I agree that that blog had comments that got out of hand. I too was saddened at the dismissive attitude. It's a shame that a woman who was sitting reading her Bible couldn't find it in her heart to be more compassionate. But hopefully she learned something in the process and the fact that she removed the post means that she gets it.

Thank you for keeping this conversation so civil--I'm way out of my league with really understanding what it's like to have autism or to have an autistic loved one, and this blog and comments are very touching.

Very best regards to each of you,

Jen

Squid said...

I'm leaving this comment on all the blogs I linked to and which haven't yet cited it: SmockityFrocks issued a sincere apology today.

http://www.smockityfrocks.com/2010/03/an-apology.html

Fairlington Blade said...

Dear MOM (NOS),

Thank you for your beautiful post. I occasionally drop by (usually through autismtwin's blog). My beloved Keen told me about the whole Smockity hullaballoo. The original post (still cached) didn't bother me so much as the defensiveness. Rather than, oh, I hadn't considered that, Connie got rather defensive. The early comments regarding autism quite gently explained that this might not have been what you thought it was.

What is truly worrisome to me is the mention by Connie that she is (or was) a teacher. To be precise, her recent "apology" contains the paragraph:

"When I described a situation I observed recently, I was seeing in my mind and describing on my blog behavior that I have witnessed dozens of times in my own seven children and hundreds of students during my eight years as a school teacher. The behavior I described was nothing more to me than childishness and impatience, but I can see now that the words I used were viewed as symptoms of autism and many people were offended."

To be honest, what I see is a foreshadowing of battles to come for me. I have twin four year old sons. Secondo has been diagnosed with autism (PDD NOS) and Primo has delays in social interactions, particularly with peers. Both are in programs for developmentally delayed children and are doing wonderfully. What I fear is a teacher such as Connie who feels she has seen hundred of misbehaving students just like my children and who will treat their condition as misbehavior. So, Smockity is much more to me than just another judgmental parent. She is, or was, a person with power over children like mine. And that worries me.

Incidentally, if you're ever in the neighborhood, a fresh cup of the best coffee Costa Rica has will be waiting for you.

Warmest regards,

The Fairlington Blade

Missy said...

I'm almost crying. The judgement and the ignorance of those who do not understand autism is disheartening, especially after reading your recent series on your sons classroom.
Are these the kinds of things I have to look forward to?
My son is at the point where doesn't "look or act" autistic enough, but he is definitely not a neurotypical child.
I am planning on spending quite some time in April on autism awareness. I will have to link back to this post and the WA post article.

"Grendel" said...

Ahhh this was a very disturbing post and i was somewhat glad to see the outrage of parents - but not the threats, no one needs those at all. We remember all too well the frowns and stares associated with trips to the supermarket or a cafe, or even the more recent snide comments about our bad parenting in allowing our child to play his nintendo and wear headphones at a family dinner in a restaurant.

If only they knew how happy we were to have discovered that the visual and auditory isolation of the Nintendo DS coupled with noise-cancelling headphones had been a lifesaver as far as as any kind of extended outing was concerned.

As parents of children with autism we very quickly learn that whatever works is acceptable particularly when it gives you a little more spontaneity.

Also - great to find another blogging parent with a child with autism who is a coffee addict. My addiction ended up taking over my blog!

Anonymous said...

I wonder where Smockity taught for those eight years -- I would be surprised if it wasn't a private Christian school. Because it's hard for me to imagine that in eight years in a public school, she didn't come across at least one student on the spectrum, didn't attend at least one in-service on autism and/or other developmental disabilities.

I've also been thinking a lot about the fact that she home schools her children. If they went to public schools, again, at least one of them would have come across a peer with autism by now, and "the symptoms of autism" would be familiar to the Smockity family.

We all know that isolation is almost always detrimental to our kids, that's why we are usually found fighting for the least restrictive environment for them (yes, there are ocassional special circumstances that are exceptions), and that's why we brave the Smockitys of the world over and over again.

But Smockity's posts are proof that isolation isn't good for anyone. It narrows your world, limits what you are able to perceive, diminishes your experience and life in profound ways. I feel sorry for the smallness of her life, even if she has chosen and constructed it freely and intentionally.

Ohio Mom

Another Autism Mom said...

Your post is both educational for those who are not familiar with autism and far more gracious than Schmuckity deserves. Ignorance is not a crime, but poking fun at those with disabilities for sport is abhorrent to anyone with even the tiniest shred of compassion or empathy, much less those who claim to live their lives for the Glory of God. I have no doubt God wept when she posted that blog entry.

KAL said...

OMG, where have I been the month of March? I'm just now reading about this whole Smockity fracas (via FB, to Stimey's Wash. Times post, to your post that was cited there). I really love and appreciate your response.

And your description of how and when Bud flaps is pretty much identical to John and pretty much identical to how I feel when he does. Let's hope this conversation continues in the blogosphere, especially with Autism Awareness Day right around the corner.

Caitlin Wray said...

So I'm choosing to see the Smockity debacle as an opportunity to spread awareness and compassion, acceptance and open-mindedness.... because if I saw it as anything else, well a sense of profound sadness would wash over me and frankly, my boys need a mom who can keep her chin up.

To me, this is truly an example of the many gifts Autism - and all human differences - bring to this world. They teach us to recoil from judgments and walk forward with a greater understanding of this beautiful mess called the human condition. Ironically, they teach us the same lessons that Christ taught but... not all Christians really speak his language.

A note on assumptions... a year ago I would have shared the assumption of some folks that Connie must surely have taught in a Christian private school. But then last year our magnificent, joyful, loved-the-world-and- everything-in-it 6 year old autistic son sat in his public school classroom, where his teacher had gathered all the kids he thought were his friends, and she instructed them to each take a turn telling him what they didn't like about him. How he talked, moved, and touched too much. How annoying he was. How weird he was. How much they really didn't like him.

And then the happy, innocent little boy who had always been my son, simply disappeared. He has never been quite the same since. I guess in a world of opposites, ours would be the opposite experience from MOM-NOS in terms of our son's classroom environment.

After removing him from that public school, we found a dream school - small, capped classes designed to accommodate the needs of all students, teachers who welcomed differences in their students, who went out of their way to make autistic kids feel equal and connected to their peers, a resource room designed as a sensory integration room, a Prinicipal who geniunely enjoyed listening to my son explain all 6 Star Wars episodes during his interview. This school is a private Christian school. I never would have thunk it - but there it is. My own assumptions and preconceptions blown out of the water.

I hope someday Connie comes to realize that she missed a lesson in Grace that day, taught by a wonderful little girl and her loving grandmother.

Caitlin
www.welcome-to-normal.com

Asperger Ninja said...

Fantastic post. Any mom with children on the spectrum have these same situations that they keep so close to the vest and try not to scream, "Don't you know how LONG we've be waiting and how HARD it is to keep him/her CALM?!?"

We all can benefit from tolerance and patience during this day, this month and the whole year.

Welcome to Autism Awareness Month! :)

christophersmom said...

I usually avoid eye contact with the Smockities out there. I'd rather not know what they're thinking. I don't mind if they keep it to themselves, but when they verbally express their prejudice against my child I feel devastated. Sometimes it's like they don't want their precious little perfect child to even see or be around mine. I'd like to come up with something smart to say in those situations, but so far I've been at a loss for words.

christophersmom said...

I just read Caitlin Wray's comment above. Oh my God, I think I wouldn't have survived that situation. Did you file a complaint against that monster of a teacher?

Caitlin Wray said...

We are in the process of doing more than that: letters to the school, the district, and our Provincial Minister of Education (I live in Canada). The really bizarre part, was that she genuinely felt she was doing him a favour. She felt that this 'constructive peer pressure' would help him change his behaviour.

It was that experience that really crystalized for me the fact that, where Autism is concerned, I need to demand change from the world more than I demand it from my son.

Caitlin
www.welcome-to-normal.com

MOM-NOS said...

Caitlin, I'm HORRIFIED by what your son experienced, and I'm glad to hear that you're pursuing it. There was a similar case in the U.S. a couple of years ago that I wrote about here. I just can't come to grips that TEACHERS thought these approaches were sound educational practice.

I'm delighted that your son is in a wonderful environment now, and I have to believe that, ultimately, this school's effects will stay with him longer than the last's.

Island Mom said...

I just read Caitlin's post, that is the most HORRIBLE thing i've ever heard, my heart breaks for your son. That's a level of ignorance and cruelty i can't even comprehend. I hope your pursuit of the situation brings about big changes, and i'm so glad you found a safe and supportive environment for your son.

My son is 5 and i worry every day that something like that will happen to him, and work every day to make sure something like that won't -- although i become more painfully aware all the time that I won't always be able to prevent other people from excercising their ignorance to hurt my son. He is so full of exuberance and joy and trust, it would flat out kill me to see that squashed.

Tomorrow is World Autism Awareness Day. May all our children have the opportunity to thrive in safe and supportive communities, and may we all have the strength to continue work to change things so that NO CHILD is treated like an outsider.

Caitlin Wray said...

Thank you MOM-NOS and Island Mom - I read about the case in the US when I was doing research for a post on my blog about 'educating the educators'. It is remarkably similar to my son's situation.

Just to clarify - we FOUND the perfect school for him, but he is not yet IN that school. They have accepted him pending funding for his EA (Educational Assistant) but we won't hear whether they get that funding (from the gov't) until June. Until then, I'm busy lobbying the gov't directly for that funding, while he is very happy to be homeschooled (which I swear has aged me by a decade in the past 5 months)! It was the homeschooling adventure that prompted me to start my blog, and then the Autism adventure took over :)

It has been immensely empowering to find other blogs like this one by parents with kids on the spectrum. I wish I'd known about them before my son went through his Grade 1 trauma, because I do believe it would have helped me be a better advocate for him before the fact, rather than after.

Caitlin
www.welcome-to-normal.com

asdmommy said...

OHMYGOSH Caitlin - the EXACT thing happened to my son last year IN PUBLIC SCHOOL 2nd grade. Only it was the OT, brought in to talk to the children about my C, who did it. It turned into 22 kids raising their hands saying "Oh, pick me! PIck me! I know something I don't like about C!" And I was THERE. Paralyzed. It was, without a doubt, the most horrible moment in my life as a parent. I still haven't been able to write about it in my blog. I just can't.

Worse, afterward, he stopped me in the hall and said that it's "really good to let kids vent." Then he put his hand on my shoulder and told me how he knew it was hard to hear the other side of the story.

This after much torment of my child through the school year - what I finally realized is that this man thought it was justified.

He's gone now thanks in part to my pursuing the incident later when I finally stopped SHAKING. Thankfully. But I will never get over it. I can't imagine there's another person in the world who experienced the exact same thing. I have to find you. You are clearly my sister.

And MOM-NOS - perfect post. Just perfect. You said it so well I don't even feel like I need to read anything else on the subject. Thank you for saying it so beautifully.

Royal Ranch said...

Hi, My name is Judy and I have recently written a book for kids about rescue llamas and their "differences". Before all of this happened I was interested in having autistic kids come to my ranch to work with my animals (all characters of the book) and to read my book. I signed up for follow-up comments on this post for the first time in my life and am so glad I did, it has literally affected my life. I can't quit thinking about what some of you go through on a day to day basis, let alone on a "bad day" basis. I am writing back to thank you all for you courage number one, but to let you know how you have affected me and encouraged this program to move forward, with gusto! If you have any input, which I really hope you do, I would love to hear from any and all of you. Again, thank you. judy@royalranch.net

My questions are specific with autism; things like group size limits. How to organize the order of things for the kids to best benefit their attention? Will things like pelts and skulls from a beaver be too scary as part of a presentation for which age group? Or is this generalizing? I have epilepsy so am very empathetic when it comes to many of the same issues, which is why I want to work with these kids, I understand about noise, being overwhelmed, etc. That is why this program is so important to be successful to me! I want to celebrate these kids. As a matter of fact, I am in the middle of changing my catch phrase. Right now the winner is The Royal Ranch, celebrating each spirit with royalty. Runner up is Royal Ranch celebrating each individual with royalty. What do you think? Thanks MomNOS for letting me go on and on and on...

Caitlin Wray said...

Ugh. ASDmommy your story literally makes me nauseous. It is INCONCEIVABLE that a trained OT would come into the sanctity of your son's classroom, under the guise of helping his classmates better understand and relate to him, and betray that kind of trust in such a devastating way! And to console you afterward because you had to understand 'both sides'? I can COMPLETELY understand how you would feel paralyzed - it would feel surreal - like something so unreal you don't even know what to say or do. Something you don't fully comprehend until it's all over.

Oh, sometimes I just get so angry! You know it is times like this when I most relate to how angry my son can get when he is overwhelmed by so much sensory input that he can't manage, control, or process it all. When the world around me seems to be at it's most cruel, idiotic, or ignorant - I sometimes just feel like my head and heart will surely explode.

That's where advocacy kicks in though. We need to channel our anger into something productive - like you did when you had him removed. If you happen to have any access to his employer - I would HIGHLY recommend sending them MOM-NOS's Hairdryer kid in a toaster brained world series. I am posting a link to that series today on my blog, because I think it is the single most magnificent "Autism Awareness" tool I've ever seen.

I am glad you found me over at Welcome to Normal! I hope we can 'talk' some more :)

Caitlin
www.welcome-to-normal.com

MOM-NOS said...

Judy, that's fantastic. I'll highlight your questions in a blog post in the coming days to try to get some feedback for you. I'm afraid that your questions might get lost here in the comments.

SUS said...

Wow. You demonstrated a lot more patience with Smockity than I did. I was just as quick to judge Connie as she was to judge the woman and her grandchild. Both Smockity and I could learn something about patience and grace from you.

Hannah Anne said...

You are awesome. I wish I was half as well spoken as you.

Heather said...

You are awesome! You have such a talent for expressing what is going on in a way that is so easy for anyone not living through it to grasp.

Anonymous said...

Wow, where have I been? Just learning of this flap. And I agree w/ the others, you are much more kind and generous than I am. I, personally, would like to poke Smockity in the eye with a ball point pen.

karen

G. Ames said...

Alright, so 40k isn't worth it to me anymore. But what about the company itself? surely it would go out of business if people woke up and realized what a waste of money their games are. The thing is, I don't think that's who's buying and playing their games. When GW raises the price, the more reasoned and casual players opt out, but the hardcore fans keep buying and playing, because they feel it is still worth it, and thus put up with the price. So even though there are less customers, the ones that remain are paying more, making up the loss. While this may be good for short term growth, it's not good for sustainability.