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Posts Tagged ‘autism’

One of the reasons I have loved my return to teaching is that at some point early on in my return, I had the epiphany that teaching English was a wonderful opportunity to help mold better humans.

How so? In my classes, we read a lot: books, essays, short stories, poems…well, maybe not so many poems.  I’m still working on my poetry analyzing skills, but the point is, we read.

A lot.

And then we discuss.

That is when I feel like I am helping to mold better human beings. We talk about the choices characters, major or minor, make. Would we make the same choices? Would we not? Why? There are never right or wrong answers. When it comes to discussion, I don’t believe there are wrong answers as long as you can back up what you are saying with contextual evidence.

I believe that if you can find some way to relate to characters in a book, whether you like them or not; if you can understand the choices characters make in a book, whether you agree with them or not, then you are more likely to have a capacity for empathy.

To me, empathy, true empathy, is something that makes each and every one of us better. Empathy allows each of us to take at least a moment to walk in another person’s shoes, to live the life they lead, to experience the path they take. It prompts us to choose kindness.

***

Yesterday I attended a presentation from a speaker who had some good ideas. My perspective on certain things were challenged, but for the most part I felt that I was actually getting something out of it…

…that is until the end when this speaker chose to close her presentation by gleefully making fun of those who need certain accommodations in the world in order to have access to a life the rest of us have.

She essentially said that accommodations like signage letting people know where to stand was an example of society falling apart. Slide after slide she continued to talk about the absurdity of needing signs that said, “Please don’t run” or “stand back to respect patient privacy” or “don’t stand on toilet”. There must have been ten, fifteen, maybe twenty slides, each inciting ever growing laughter from the crowd…

…each a slap in the face to Brooke, my autistic and epileptic daughter, and individuals like her that may need a little help knowing where to go, what to do, or when to do it. Each slide the laughter rose as did my concentrated rage.

According to the presenter, we shouldn’t have these ridiculous accommodations, because  nobody should need them – people should just learn them. Apparently Brooke’s needs are not worthy. Apparently the needs of those like Brooke are not worthy.

The more people laughed, the angrier I became; not at the audience – they had been set up to laugh. No, my rage was directed solely at the presenter who should have known better. She is a social and emotional behavior “expert”. Today I put that in quotes quite purposefully.

She went after a group of people who are vulnerable for laughs. She went after those who most need the rest of us to be empathetic. She was punching down.

Here’s the thing: I am a big fan of teasing. Teasing those we know well can help solidify our bonds. But the key is teasing should generally happen between people who know each other, people who care about each other, people who understand each other. Teasing allows us to self-reflect and acknowledge our own shortcomings…we all have them.

But when you tease an entire group indirectly, especially a vulnerable group for the sole purpose of getting laughs from a group you perceive as an “us” vs an “other”, then you’re behaving like a bully.

I don’t know this presenter well enough to know whether she is a bully or not, but her actions were that of a bully.

Whether the presenter realizes it or not, she sees my Brooke, and those like her, as less.

She and those like her are NOT less. She and those like her deserve to be treated with dignity. She and those like her should have access to the rich experience of life, just like the rest of us.

Accommodation, no matter how absurd it may feel to you or me, gives normalcy to someone who needs it; it allows those who this woman would classify as “others” to be part of “us”.

We all deserve to be “us”.

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A few weeks ago I got suckered.  I read this amazing post about a person who had been fat-shamed publicly online while minding her own business at a baseball game.  A trainer had called her out on his Facebook page and, having caught wind of the post, the victim hit back and wrote a wonderful piece about how she was on a journey of weightloss; working toward a more healthful lifestyle, but remembering to enjoy the present.  It was a wonderful message, reminding all of us that we don’t know where someone is on their journey in life.  I posted it on my Facebook page because I found it inspiring.

A day or two later, I found out that it was all a fraud.  A blogger, know to many as the anti-Jared, had seen the trainer’s post and decided that since he knew someone who had experienced something similar, HE would take on the persona of the victim, whom he did not know.  I felt icky, used, misled.  I was told that he does this from time to time and that anyone who follows his blog knows this.  I, along with millions of others, do NOT know or follow his blog.  I, along with millions of others was duped into believing an inspirational story that turned out to be nothing more than a ploy to go viral – which is why I will NOT link to it.

He later offered a non-apology to those who felt they were misled…kind of a “I’m sorry that you misunderstood, but…” kind of apology.  I hate that kind of crap.  It passes blame to the very people who deserve an apology and exonerates the person who perpetrated the misdeed…

In the end, his tactics only hurt the cause.  His post could have been just as powerful had he opened with a disclaimer.

To the anti-Jared, the ends justified the means…

The ends should NEVER justify the means.

***

As I was contemplating this post, I saw two anti-vax memes.  Now, as many of you are aware, I am a proponent of vaccines.  I hear the arguments of those who are adamantly against vaccines and those who advocate a choice and I still feel like the best course is the one we are on.  But this post is not about the debate whether one is for or against vaccines; it’s to ask, do the ends justify the means?  The posts I saw were from a heartless, dark souled woman who goes by the name Tenpenny.  In one meme she compared getting vaccinated to getting raped.  She had posted it several times because, she said, that whether we agreed with the message or not, it was promoting discussion.  To her, it didn’t matter that she was belittling the experience of millions of woman who have been brutally violated.

Let me be clear – you and I may or may not agree on vaccines.  Some of us want them; some of us don’t.  Nobody wants to be raped.

Her second meme asked, if the rise in autism  was a result of better diagnoses, where were all of the nonverbal autistic adults walking around in diapers and helmets.  I stared at the screen waiting for what I saw to change into something, anything else.  Forget the fact that she has a distorted view of pre-verbal autistic individuals – to her it doesn’t matter that she insults and belittles an entire portion of the population, making massive assumptions.

To her, the ends justify the means.  To get her message across, she doesn’t care who she hurts.

The ends should NEVER justify the means.

I thought about posting the two memes here so you could see just how awful and repugnant they were, but upon further consideration, I thought better.

***

I am sure that along the way, I have been guilty of some questionable posts.  I hope I have never done anything as egregious as the anti-Jared or Dr. Tenpenny.  If I have (or do in the future), call me on it, please.  Unless I am able to justify the means on their own, independent from the ends, I will take down the post and apologize profusely.  I expect no such apology from the soulless, attention seeking types like the anti-Jared or Dr. Tenpenny.

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Connection

fingers_touching

With the onset of middle school, I had to finally give up walking Brooke to her class every morning.

***

We stop at the bottom of the hill, some 50 yards from the entrance to the school.  We give each other a kiss on the cheek and then do something we call the “rollers” where we rub our cheeks together.  I watch, every morning with my breath held, as a little piece of my heart goes running up the hill and off to school.

***

For those of you who have been here from the beginning, or who have an autistic child, you know that Brooke’s attempts at play bids are clumsy and awkward at best, often leaving the recipients of those bids unsure of what to do.  Different kids react in different ways, but often, they will simply look at each other and move on.  I don’t know if Brooke is totally aware of how things are playing out or if she is blissfully ignorant – either way, it hurts to watch as a parent.

***

About halfway up the hill is a girl, by the looks of her from 25-30 yards, I would guess she is in 8th grade.  She is obviously waiting for some friends to arrive on the buses that are beginning to pull in.  Brooke veers toward her.  My already held breath turns into a ball of lead in my sternum.

***

Lately, Brooke has taken to making faces at people.  She will put her thumbs to her temple and stick out her tongue and squinch up her face.

***

I see the hands go to her head, elbows flaring out.  Though her back is turned to me, I can easily tell she is making faces at this girl.  ‘Oh crap!’ I think to myself…

…and then the girl makes a face back.

…and then Brooke bows to her.

…and the girl bows back.

…and then Brooke heads into school.

***

This has been played out on almost a daily basis.  Sometimes, if we are early or late, we miss her, but whenever we are on time, it is the same routine…the same connection.

I have no idea who this girl is, but whoever you are, thank you.

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TLC_MBB_Product_Shot_Bonbel

A year ago, I wrote —>>>this<<<—.  I was ultimately able to find a semi-local store that I bought out AND Laughing Cow was kind enough to send me a case.  For a while we were flush in yellow circle cheese.

A couple of months ago, we finally ran out, and I ran into the same problem.  I could not find my baby’s favorite cheese anywhere.  I finally reached out to my contact at the source.

I have some sad news to report.  Late this morning, I received this email from Bel Brands USA:

Hi Luau,

I remember speaking with you last year, and we at Bel Brands USA were all very happy to be able to help you get the cheese your daughter loves.

Unfortunately, I have bad news: a few months ago, the Bonbel flavor of our Mini Babybel cheese was discontinued (along with our Laughing Cow Blue cheese, and our Strawberries & Cream cheese.) Those three products were just not selling well enough across the country, and it had reached the point where some of the major grocery chains had told our sales reps that they would not be ordering any of those items for their shelves. Our parent company in Europe had already discontinued the Bonbel flavor more than a year ago, so at this point it is a product that is no longer made by our company in any location.

Shane, the person who had been so kind to help us last year when I was desperately trying to track down those little yellow-gold circles of yumminess, went on to suggest that perhaps we could try the Baby Bel Originals (Reds) with Brooke.  Apparently the recipes are very, very similar.  Sadly, as many of you know, sometimes, with kids like Brooke, it’s not just the flavor that makes or breaks an item.  The color it is wrapped in can change a food item from a must-have to a can’t-eat.

Perhaps if I had been more effusive in my praise of Bonbels a year ago, more people would have bought them and they would have stayed on the market.  I know I did my best to keep their “mover” status at my local stores, yet somehow I feel like I have failed my baby girl.

For now it looks like cheese may be off Brooke’s  menu, which, as a cheese lover, seriously bums me out.

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Dutch-flag

I read an article on the Interwebs this morning about the discovery of a young autistic boy who was being kept in a cage by his parents.  The article itself, though not approving of the parents’ actions, tried to address the fact that many families and school systems are simply overwhelmed by what they face on a daily basis.  This particular boy was said to be violent and the parents feared for his and their own safety.  Obviously the writer had done some research, citing this expert and that.  The writer also talked about how various institutions regularly sought expert help.

After I read the article and then reflected for a while, this thought popped into my head.

If you planned a trip to Italy, but your plane ended up in Holland, who would you seek help from?  Would you call someone in Italy?  Would you seek out fellow tourists?  Maybe call your travel agent back home? Or would you try to find a native?

For those confused by this seeming nonsequitor, there is a poem written by Emily Perl Kingsley, a parent of an autistic child, that tries to explain why the experience having an autistic child is similar to planning a trip to Italy, but discovering that your plane has landed in Holland.  If you haven’t read it, google it; it’s worth a read.

Now, I know that most people would probably either call their travel agent or maybe even the airlines, but for the sake of argument, let’s just say there are no flights to Italy and you are basically going to have to spend your entire time in Holland.  Maybe you seek out the local American Embassy (if you’re an American like me).  Perhaps you, as Kingsley’s poem suggests, go out and buy a new guidebook, maybe even learn a little bit of the language.

Here’s my thought though – tour guides and guide book and maps and phone apps will really only let you scratch the surface of what Holland truly has to offer…what it means and feels to be Dutch.

Do you get where I’m going here?

Who knows Holland better than any tour guide, guide book, or even fellow Americans who landed here before you?  You know who knows Holland?  The Dutch, that’s who.

***

There has been a lot of hand wringing about this child who was kept in a cage.  A lot of people saying how wrong it is, that no one should be kept in a cage.  I could not agree more.  But hand wringing and condemnation will not help either the boy or his family.  Many experts, both medical and social, are doing the best they can with the tools and knowledge they are equipped with, but I think that this story exemplifies the lack of resources, not just for the families, but for the dedicated people out there who work tirelessly to help safeguard our kids (those under and over 21).

I know that when you’ve met one autistic person, you have only met one autistic person…but don’t you think that the people of Amsterdam may know more about the people of Rotterdam than the average American?  I’m not saying that autistic people have or could give you all the answers on how to help families with autistic members, but I’m pretty darned sure that they might be able to see from a perspective that most of us never thought of.

Perhaps it’s time for advocacy groups, supports groups, school systems, hospitals, police departments, and the like to begin employing autistic individuals to help brainstorm what we can do to help the families scattered across this nation who are struggling daily with little or no services.  Knowing why a child or adult reacts in a certain way may guide us to the tools to help alleviate stressors or even stop what is causing a violent outburst.

Families deserve more.

Autistic individuals deserve more.

That way we can all enjoy our stay in Holland…perhaps even making our friends who got to go Italy to want to pop over for a visit.

 

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My daughter does not have a disease like cancer…despite what PETA or Autism Speaks might imply.

My daughter is not God’s vengeance…despite what Toni Braxton may have once thought.

My daughter is no more a potential killer than any of you…despite what the Washington Post might say.

My daughter, Brooke, has autism.

She IS autistic.

Is being autistic all sunshine and rainbows and unicorns?

Um, no.

Are there days that Brooke struggles mightily, in part because she is autistic?

Sure, no doubt.

Are there days when Brooke excels, in part because she is autistic?

Absolutely.

***

Words matter.

Stigma matters.

Demonization matters.

The way Ms. Braxton or PETA or the Washington Post or Autism Speaks talk about autism undoubtedly has led to unnecessary  tragedy.  I am not trying to convince a struggling parent that their autistic child is a gift from god, unless you believe that ALL children are a gift from god.  I am not painting a picture that is all rosy and “happily ever after” when an individual or family receives an autism diagnosis.  I am not trying to hold a scared parent’s hand and say, “everything will work out fine”.

BUT…

But individuals, parents, families and friends need to understand that autism and being autistic is NOT a death sentence like cancer can be…

Individuals, parents, families and friends need to understand that autism and being autistic is NOT a punishment of the parent for some imagined slight against his or her god…

Individuals, parents, families and friends need to understand that autism and being autistic is NOT an indicator of murderous tendencies any more than being any other member of the human race is…

***

My daughter is autistic.

She struggles a little more than others.

She also giggles and smiles a little more than others too.

She sees the world a little differently than you or me.

Sometimes that hinders…sometimes that helps.

As her parents, Jess and I do what we can to make the world a friendlier, easier place for her to exist in, while providing her with skills that will allow her to navigate it.

***

For the love of whatever deity you pray to, please stop seeing her as a diseased punishment, hell bent on hurting people.

My daughter is autistic.

She is different.

And that is okay.

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She IS driving…

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Yesterday I posted this on Twitter:

Dear @peta,
Is it lost on you that you are demonizing #autistic people with your Got #Autism/ #Milk campaign? That action has consequences.

A little while ago they responded with a non-response:

@luau Researchers have backed up many families’ findings that a dairy-free diet can help kids with autism: http://t.co/yl9O76Gmve

No acknowledgement of dehumanizing autistic people; just uncited “research” not even tangentially justifying their actions.

And so I said this:

@peta you’re still demonizing autistics – THAT has consequences!!! How many parents have killed their autistic child b/c of demonization?

And this:

@peta if the “science” were true, there are better ways you could have said so…

@peta instead you chose to perpetuate the demonization.

@peta it’s lazy and narrow minded….and again, has consequences.

I kept wondering how I could put their campaign in a light that they might understand. The best I could come up with while driving down I-90 was this:

@peta let me ask u this – I know little about PETA….
…but many friends say u r money grabbing attention whores… Do you feel this is a fair assessment? Of course not…
…perhaps I should do my own research, right?
…so my question: did u interview anyone in the autistic community? And not @autismspeaks – they are a parent organization…
…did you speak to any autistic adults? Without cherry picking data?
…I would recommend speaking to the autistic community NOT the autism community.

So, I know it was completely ineloquent, but I would like to know if PETA ever even considered talking with autistic people? My guess is they would have found that in those autistics with lactose intolerance or dairy allergies, going off dairy would have shown improvement in some co-morbid issues, whereas in others, there would have been no difference in the way an autistic individual went through their day whether they had milk or not.

If PETA wants to be taken seriously, they should behave as one, instead of irresponsibly demonizing more 1% of the population.

***apologies for any typos – written on the fly on my phone***

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