Feeds:
Posts
Comments

Posts Tagged ‘autism’

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.

Advertisements

Read Full Post »

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.

Read Full Post »

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.

Read Full Post »

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.

 

Read Full Post »

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.

10303457_10152222359129915_4747759480652242154_n

She IS driving…

Read Full Post »

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***

Read Full Post »

If you are a headline writer, you are an asshole.

There, I said it.  You may not like it, but it’s true.

Why? Because if you are a headline writer, a craft that goes back to the early days of the printed news, you have contributed to the continual dumbing down of the United States of America.

The recent article by the Washington Post claiming “Study: ‘Significant’ statistical link between mass murder and autism” was a classic example of what newspapers and networks have been more and more guilty of in recent years.  Hitting people with out of context snippets to create interest to drive traffic in the form of clicks or viewers to bring in dollars is what these assholes do.

The problem is that a large chunk of people won’t click through and will simply read the headline – absorbing it as critical information without actually understanding the greater context of the  bigger picture.  Those that DO click through will read the article or watch the video through the lens of the headline – so despite the content saying something completely different, or at least preaching caution, the reader/viewer will not truly understand what they are reading.

We have become a headline nation – why is it that the Right and the Left are so far apart on everything?  They actually are not, but the headline writers have purposely created an environment that feed the angers and insecurities of a struggling nation.

Are we really so far apart on health care? or education? or security? taxes? care for the less fortunate? religious freedom? gay marriage? abortion?  I would argue that the vast majority are much, much closer than people realize.  The problem is that we can’t get past the headlines.  Headline writers throw people into one of two camps – for or against – when the truth is much more subtle.  We have reached a point where we compress everything we believe into 140 measly characters and then shout it out in ALL CAPS.

Nothing, I mean NOTHING that is worth debating should be compressed down to 140 characters (or even 1.400 characters for that matter).  The problem is that we have become lazy readers who would much rather have our country run by  someone we think would be a good drinking buddy instead of someone who is obviously way smarter than we are.

I consider myself to be pretty bright.  I did pretty well in high school and went to a decent college.  I like to think that I’ve got some brains – but there is no way on God’s green Earth that you could convince me that I am intelligent enough to run a country, no less the most powerful nation in the world.  Meanwhile, our leaders have been pushed by these headline writers to dumb themselves down.

In my opinion, these headline writers, particularly the one who wrote the headline for the Washington Post article, are guilty of negligence and any harm perpetrated by a parent on an autistic individual will have to be partially blamed on that particular headline writer.  Why?  Because somewhere out there is a parent who is feeling lost because society still hasn’t fully accepted autistic people.  Wherever this parent is, he or she will read the headline, and in some twisted, sick, evil way will come to the conclusion that he or she will be saving society by hurting their child.  This headline writer should also be found guilty of causing loss of employment of any autistic who doesn’t get a job he or she is qualified for because somewhere in the back of an employers mind will be, “I can’t hire a potential mass murderer”.

John Elder Robinson debunked the “study” showing that the number of people who were known to have autism in the study was about the same percentage as overall society, but I betting that most people who read the original article didn’t pick up on that.

The bottom line is this – I implore you to ignore the headlines when you aren’t willing to read the full article…

…and always remember, headline writers are assholes.

Read Full Post »

Older Posts »

%d bloggers like this: