
I don’t fly here often. I am usually caught up in my own local mishegas, but every once in a while, I have the common sense to take a step back. True, I am not as wrapped up in the online autism community as Jess is – not by a long shot. Yes, I do write about autism from time to time on a personal level, but for the most part, I am a stranger, a seasoned tourist as best, in autism blog land.
I’m sure there are some in that land who will read this and say, “shut the hell up. You have no idea what you are talking about! You’re not wrapped up in the stories! You don’t know all the history!” and they would be right. That would be exactly the point as well, because sometimes, when you are in the middle of the shit, even if someone holds a mirror right to your face, you fail to realize just how ugly you have become; you do not recognize that you have lost the thread; that you are battling for the simple sake of battling; that you have become caught up in the minutiae, forgetting the real reason you went to war…
…and when that person who holds the purse strings on resources that need to be allocated looks around to see to whom he or she should be giving grants to, THAT person is not going to know the “history” either.
They will do a Google Search, and what will they find?
Sigh.
***
100,000 feet.
I love looking down on the world from up here. Everything is so peaceful, so beautiful. I can look down and see that everyone is working toward the same goal, the same future. A tomorrow where all people, autistic and non-autistic are treated fairly, equally, compassionately.
***
From 100,000 feet I can’t see the petty squabbles, the sycophantic massaging or masturbatory self-stroking of egos, the hurt pride over imagined and real slights, the marking of territories, the grandstanding and the chest thumping.
From 100,000 feet I can’t see that many of the parents of autistics have lost the forest for the trees, forgetting that their autistic children will someday be autistic adults who we DO ultimately want to be able to advocate for themselves.
From 100,000 feet I can’t see that many of the autistic self-advocates can’t seem to understand why some parents feel that those self-advocates don’t and can’t speak for their children; that not all autistics are impacted in the same way.
From 100,000 feet I can’t see the exhausting, monotonous war of words where both sides simply must get in the final word.
From 100,000 feet I can’t see that at times both sides simply devolve into bratty children, stomping their feet because someone disagrees with someone else, forgetting that they are supposed to be acting like adults.
From 100,000 feet I can’t see an autism community that is fractured because certain members have decided to put their fingers in their ears and yell, “la la la la la” at the top of their lungs.
From 100,000 feet I can’t see the snipers taking quotes out of context, or reacting to one fifth of a statement without considering the other 80%.
From 100,000 feet I can’t see the thoughtless and over-thought comments, meant more for destruction than construction.
***
Yes, from 100,000 feet I can’t see any of that.
***
From 100,000 feet I do see two camps that ultimately have the same goal. At 20,000 feet you might tell me that one group wants to “cure” autism and another wants to make the world a better place for autistics, but up here at 100,000 feet, both are ultimately a desire to ease or eliminate the difficulties that autistics face on a daily basis.
From 100,000 feet I see people who are passionate about making things better either for themselves or for their children or both and are pouring every last ounce of their energy into that goal.
From 100,000 feet I see parents and self-advocates fighting for dignity for all members of the spectrum.
From 100,000 feet I see one family, one community.
***
I wish that those who are caught up in this war of words, those who simply feel they must retaliate, must debate, must argue every, petty point could come fly with me up here at 100,000 feet and see the world from up here just to remember.
Just to remember why they are passionate.
Just to remember why they fight.
Just to remember that the way they behave today has a real impact on how others will behave in the future.
Just to remember that love should be our engine, and that love is kind, love is inclusive, love does not hate.
Just to remember…
***
The more you fight, the less likely the world will take us seriously. The more you act like hormonal teenagers overreacting to even the slightest indirect slur, the less likely the world will take us seriously. The more you yell at each other without bothering to listen, I mean really listen, the less likely the world will take us seriously. The more you are “angry” on a regular basis, the less likely the world will take us seriously.
The digital age has given us an incredible opportunity, an incredible power to make the world a better place, build it up, constructively, together – instead, so many within this community are using it to belittle those in disagreement with snarky personal attacks, name calling, and somewhat idiotic, occasionally fictitious drivel.
Come up to 100,000 feet and remember.
Remember why you put yourself out there in the first place…
Remember that your child will grow up to be an adult…
Remember that you were once a child…
Remember that, at least from 100,000 feet, the goal has always been the same…
…to make tomorrow better…
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Shoes
Posted in Uncategorized, tagged Bloggers, mikaela lynch, pay by the click, pay by the comment, shoes on May 17, 2013| 5 Comments »
Whether we care to admit it, we have all done it – rolled our eyes as we’ve listened to someone go on about how difficult they have it. I know I have. Whether it’s food allergies or diabetes or behavioral issues, I’ve acted as if intently listening, truly concerned about what the speaker or speaker’s child is going through, all the while rolling my eyes internally thinking, really? you’re complaining about that? Oh. My. GOD! Will you shut up with your non-problem?
I
don’ttry not to do that anymore. I learned quite a while ago that for each of us, our issues are just that – ours. They are personal, they are deep, and they can cause much distress in our lives. I once rolled my eyes at food allergies – but you know what? Food allergies can kill. I used to roll my eyes at diabetes, self induced in particular – but you know what? Diabetes can kill.Unless you are living it (or have lived it) you can’t fully understand it. Even within the autism community, there are such a wide range of experiences that are as unique from individual to individual as diabetes is to food allergies. I cannot begin to truly imagine what it would be like to have to wipe feces off the wall on a regular basis. I haven’t lived it, so I can’t/shouldn’t judge a parent in that situation for some actions that may seem a little “different” to me.
Which brings me to the awful events surrounding Mikaela Lynch. Earlier this week, 9 year old Mikaela, who was more impacted by autism than my Brooke, slipped out of her parent’s care. Sadly, a couple of days ago she was found in a creek, deceased. Regardless of whether one was part of the autism community or not, I would have assumed that everyone would mourn the loss of this young girl and if nothing else, have thoughts of condolences to her parents and family.
But that was not the case.
To my horror, there were some who decided that maybe less than 24 hours after Mikaela’s body had been found, it would be a good idea to ask if blame should be laid on the parents. Now, I am not going to name anyone, in part because some bloggers get paid by the number of times people click on to their page and even more with every comment that is left on their posts. The more clicks and the more comments, the more they get paid (I wonder what kind of writing such writers are inspired to produce?).
It became apparent that one particular person throwing blame at the parents was not a parent. That person, when called on that fact, rightfully asked if the market on criticizing parents was cornered by those who are parents. It’s true, non-parents have just as much of a right to criticize a parent’s action as anybody else…
BUT
…but that person, as any of us who would judge someone else, should have at least made an intellectual attempt to walk in their target’s shoes.
As much as we over share our lives via social media (and believe me, I know I am guilty in the first degree) how well do we truly know each other? Not nearly as well as we think.
Were Mikaela’s parents negligent? I can’t answer that because I didn’t know Mikaela, her parents or her 8 year old brother, who was apparently keeping an eye on her. YOUR first reaction may be what? an 8 year was supervising a 9 year old autistic girl? Horrors! but then you would fail to recognize that you were looking at the situation through the lens of your life or your personal experience and knowledge of 8 year olds. I have known a few 8 year old kids who I would have trusted to keep an eye on things while I went inside to do dishes, sweep the floor or whatever it is that Mikaela’s parents were doing inside their house. NT (neuro-typical) siblings are unfairly
askedforced to grow and mature quickly. Unless you really know them, how can you really judge them?I try not to jump to judgement on a daily basis and I fail at it over and over again on a daily basis (see Amy’s Baking Company meltdown on Kitchen Nightmares – it’s really hard not to judge) but I try to remind myself every time to at least imagine walking in someone else’s shoes for a bit before dropping the hammer. I hope people will do that before snapping to judgement on Mikaela’s family, or anyone else’s for that matter.
IN ADDITION:
It would appear that there are actual specifics to the timeline that one certain mean-spirited blogger chose to ignore. The blogger chose to write that the parents didn’t notice Mikaela was missing for 30 minutes and that they were inside the house the entire time. Sensationalist at best, mean-spirited and money driven (clicks and comments – there’s a reason why this blogger responds to comments with insults; to get a rise out of commenters who will then leave more comments, putting more money in her pocket) more likely, this blogger painted the worst possible picture without any real facts. Here is the timeline and what the mother was doing according to to the National Autism Association –
While her two children played on a trampoline on Mother’s Day, Mikalea’s mother was in the back of their vacation home putting screens on vent holes because the wasps were building hives in them. During this time, a bee scared Mikaela’s brother, he ran and Mikaela disappeared. Based on video surveillance and time stamp, Mikaela’s parents were two minutes behind her. Thirteen minutes into frantically searching for their daughter, they called the police.
Please stick to reputable news sources when forming an opinion – the examiner.com, though generally entertaining, is not one of them.
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