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Archive for May, 2013

Brooke loves cheese.

Actually, scratch that. Brooke loves a particular cheese – the Babybel Bonbels, or better known in our house as the Yellow Circle Cheese.

Most days she would be happy eating three or four of those little circles with every meal.

But it has to be the Yellow Wrapped ones…not the red or the orange or the green or the white. My palate really isn’t refined enough to tell a huge difference between the various Babybels, but to Brooke those differences make the difference between edible and non-edible.

So it was to my great dismay about a year ago when my local grocery store stopped carrying the Yellow Wrapped Circle Cheeses. Fortunately, I was able to find another store that carried them. I would make a special trip once every three weeks or so and buy out their supply of the precious yellow rounds.

And then one day, they were gone.

I began to spread my net in search of the suddenly rare cheese, but to no avail. After several weeks, I gave up. To be honest, Brooke wasn’t asking for them, so I decided not to pursue my search. Maybe it was a winter thing, I don’t know, but as winter turned to spring, Brooke again began asking.

Finally, earlier this week, while she and I were at Whole Foods looking for a special cheese for Jess, Brooke asked the cheese lady if they had any Yellow Circle Cheese. She seemed a little confused so I jumped in to interpret.

We were looking for the Babybel Bonbels, I explained. She offered up the other colors, to which Brooke gave the stink eye – gross!

The cheese lady laughed and said she would be happy to order some – come back Friday, she said. Brooke looked at me and said, “we will come back Friday.” I made a mental note and moved on, delighted that finally someone was taking my plight seriously.

Last night one of the last things Brooke said was, “I can’t wait for the cheese tomorrow.” This morning while coming down for breakfast she said, “We have to go to the market after school. They said they will have the yellow circle cheese.”

This morning, after running a couple of errands, I went to Whole Foods. I don’t normally shop there, but obviously they had an important package for me. I paused at the entrance wondering if I should grab a basket, but decided I could easily carry all the Yellow Circle Cheeses out in my arms. I headed straight for the Cheese Department with anticipation on my face.

As soon as I found the Circle Cheese section, my face fell. No Yellow Nuggets of Wonder. Maybe they hadn’t been delivered yet, I thought. Maybe they were keeping them safe for my Brooke so no one else could take them.

I spotted the cheese lady, who looked at me with mild recognition. I asked about the Yellow Cheese. She hesitated. They should be out there she said. I pointed out they were not. She said they had ordered all flavors and had put out everything that had arrived.

My shoulders slumped. What am I going to tell my autistic daughter, I asked aloud. The poor cheese lady, seeing the defeated look in my eyes could offer nothing. I didn’t blame her, but I was so damned mad.

I went home and took to the Internet, looking to see if anyone in a 20 mile radius carried these damned things. I left Babybel a message, I even called their media department. Their online folks were kind enough to respond but ultimately just directed me back to their website, which consequently was of very little use.

I looked at my watch – almost 3:00 – time to face the music. I knew the question was coming. After a quick chat with Brooke’s aide, I told her we needed to get ready for yoga.

“Wait,” she said, “we need to go to the market first. They said they would have the cheeses!” I nearly cried trying to explain to her what had happened. She was disappointed but kept it together.

Walking back to our car, I got a notification on Facebook. My best friend’s mother had called seven grocery stores in search of the cheese to no avail. A friend from Miami sent a picture of the Yellow Cheese at her market that she just happened to be walking by as she was scrolling through her feed. Another Facebook friend in Chicago had seen them there. My best friend even offered to FedEx them from Houston.

All very sweet, but what it all ultimately tells me is that they still make the Bonbels, they simply aren’t delivering them to my neck of the woods!

I’m not sure where I’m going with this other than to maybe ask you to help me convince Babybel and the Laughing Cow that there is a market for their little yellow jewels of deliciousness here in Boston; that there is one little autistic girl who would absolutely love it if they started delivering the Bonbels to the area again. I mean, they already send every other flavor up here already. It can’t be hard to add the Bonbels, right?

20130531-173018.jpg

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Women are worthless.

Women are stupid.

Women are only good for cooking, cleaning, and making babies.

Women can’t handle pressure.

Women can’t be independent.

Women can’t be athletic.

Women can’t run marathons.

Women are weak.

Women are useless.

Women are not equal.

***

How do you think my girls would feel about themselves and their future if this is what they constantly heard, directly or not, regarding the adult versions of themselves?  What would their self-esteem be like?  What kind of life would they ultimately lead?

No matter what was said to them directly, if they constantly heard the above statements as background noise, you sure as Hell can bet they  would absorb it.

Children are always listening.

None, I repeat none of those things are true.

***

Men are dogs.

Men are sleazy.

Men are assholes.

Men suck.

Men don’t have feelings.

Men don’t cry.

Men don’t care.

Men are evil.

***

How do you think young boys would feel about themselves and their future if this is what they constantly heard, directly or not, regarding the adult versions of themselves?  What would their self-esteem be like?  What kind of life would they ultimately lead?

No matter what was said to them directly, if they constantly heard the above statements as background noise, you sure as Hell can bet they  would absorb it.

Children are always listening.

None, I repeat none of those things are true.

***

What are you saying about autistic adults in front of your autistic child?

Children are always listening.

listen1

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EarthViewFrom100kilometers

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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Last week I wrote —>this<— in response to a self-proclaimed crime analyst/profiler/blogger who attacked the family of Mikaela Lynch by blaming the parents for her death.  In a nutshell, this was the post: the First Amendment protects your right to be an asshole…that doesn’t mean the First Amendment tells you to BE an asshole.  The concept being that although the First Amendment protects your right to free speech, this picture of Moses bringing down the Two Commandments reminds you to temper that free speech with a little compassion.

This applies to EVERYONE

This applies to EVERYONE

I was pretty proud of the post, and I got some positive feedback from many parents in the autism community.

Boy, it didn’t take some of them very long to turn the tables right around and be just as vicious, just as cruel, just as mean and cliquey as that self-proclaimed crime analyst who had attacked them just days earlier.  Had they turned their emotional anger toward that self-proclaimed crime analyst/profiler/blogger, I would have chalked it up as karma, but these parents have chosen to attack one of their own.  Well, that’s not quite right.  They have chosen to silence nearly half, yes HALF of the autism community.  Which half you may ask?  The half that IS autistic.  Ironic, isn’t it?  The reason?  Because the autistic people they are attacking aren’t parents.  In these parents’ views, an autistic person who is not the parent of an autistic child can’t possibly know anything about anything that has to do with caring for an autistic person.

What?

One of their arguments compares autistics trying to give their perspective on the emotional topic of wandering to a layman giving medical advice on how to cure cancer.  One blogger literally told autistics to, and I quote, “Shut Up!”

Um, really?

So, hmm, let’s use this comparison: a government body of over 500 hundred mostly white, grumpy old men dictating what half of the population (women) can and cannot do with their bodies when it comes to the emotional topic of reproductive rights.  Guess what – those moms are NOT the women in this comparison, they are the grumpy, white, old men.  Why?  Because, going by their argument, how can they possibly know anything about anything in regard to bringing forth bills and passing laws and dealing with lobbyists – they can’t so STFU!  Oh, you’ve studied the law?  Well, you’re not and never have been a member of Congress, so STFU!  Oh, you’ve worked for your local government?  That’s cute.  You’re not a member of Congress, so STFU!

But that’s stupid, isn’t it?  I mean, really.  How is it okay to tell the very population you are trying to protect to shut up?  Again, kind of repeating what I said last week, if you want to tell people to shut up, I suppose it IS you First Amendment right…but you would be in direct opposition to God’s Two Commandments – 1. Be Cool and most important in my opinion 2. Don’t Be an Asshole.  Being mean and cliquey really just reveals that you’re mean and cliquey…and that you’ve broken the 2nd Commandment and are an asshole.

When it comes to the topic of wandering, I agree that we must find a way to make sure our kids are protected, but we must be willing to listen to autistic people, if for nothing else possibly discovering that there might be a reason for some, and I stress the word SOME, of the wandering.  This video, made by an autistic person, is not the answer, but it does give perspective, another way to look at the sitation.

What surprises me is that people got upset at this video.  In hearing some of the responses, however, I came to understand that they cherry picked what they heard, choosing not to hear the rest.

Sound very Congress-like, no?

Yes, it touches on a subject that most parents’ of autistics cringe at – abuse – but he goes on to say that particular situation is in a very small minority.  As Jess asked her readers yesterday, take a moment to listen, really listen!  And then I ask you to temper your use of the First Amendment with the First and Second Commandments.

If you don’t want people like Chelsea Hoffman being an asshole to you and your community, then don’t be an asshole to the very community you are trying to protect.

And don’t be a grumpy, old white Congressman who thinks he knows it all.

And remember, just because the First Amendment protects your the right to be an asshole…it doesn’t mean you HAVE to be an asshole.

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Today I pay tribute to a streak ended.

Yesterday my friend Adam was forced to end his 510 day running streak because of a sudden injury.

510 days!

Just to put that into perspective, as of yesterday my streak now stands at 140 days. Even if I were to do that 3 consecutive times, I would still be 90 days short.  My streak stands at 20 weeks.  Adam’s streak ended one day short of 73 weeks.

That’s a lot of running.  That is endurance.  That is commitment and dedication.  That is strength.

***

What happened to Adam you may ask?

On Saturday Adam, while hiking the trails, he was forced to defend his family from a bear that tried to attack them. After bobbing and weaving away from the bear’s fierce claws, Adam punched it right in the nose. Stunned, the bear began to back off, but just for good measure Adam threw in a powerful side kick to the bear’s stomach.

The bear turned tail and ran for the hills. There was much rejoicing, that is until the adrenaline began to wear off.  That was when Adam realized he had twisted his ankle with that final kick. His ankle began to swell and he feared the worst.

On Sunday, Adam valiantly attempted to run. After a mile (the official daily minimum) he was done…he would not run on Monday. He knew that although he had defeated the bear, the bear had broken his streak.

I would like to emphasize, the rumors that Adam twisted his ankle heading out his patio door are patently untrue and in all likelihood were invented and  spread by the bear’s embarrassed family.

***

All joking aside, much respect to Adam and his 510 day streak. I look at that number with awe and respect.  A lot of things can go wrong over the course of 510 days that prevent a person from continuing, and somehow, through it all, Adam always managed to get at least one run (and sometime two or three) in.

Adam on the trail.

Adam on the trail.

A pox on the bear and his family…and on patio doors too!

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It happened in what felt like an instant.  With family and friends visiting, we were all playing, laughing, chatting in the backyard.  I think Brooke must have been maybe 4 years old.  At that point we were a relatively newly diagnosed family.  Jess and I were a bit overwhelmed by the sudden, almost complete opacity of our now uncertain future.

One moment we were all yucking it up, the kids running about, and the next moment it was, “where’s Brooke?”

The conversation stopped.

Someone asked the other children if they knew where Brooke was – blank stares.

Within seconds several of us were bolting to the other side of the house, which is where we found her, maybe 3 or 4 feet from the street, completely unaware of the dangers in front of her.

The next day I called a guy about putting in a fence, which we had in place within a week.

***

It could happen to anyone.  As parents, we have all had that moment of panic, that moment of where’s my baby? 99.999% of the time, we find them, oblivious to the unintentional scare they have put us through.

Whether or not a child is autistic, if the stars line up just so, something like what happened to Mikaela Lynch and her family could happen to anyone.  It happened again this weekend in South Florida where we lost a young boy to wandering and then drowning.

Some people have had the nerve to call into question the parenting skills of those kids’ mothers; that they should have been watching them at the time, as if they should have known that that was the moment.  Last week I responded to some of those people by asking them to a) take some time to actually walk in the shoes of the parents they were bashing and b) remember that the First Amendment must be tempered by the Two (Yes, TWO!) Commandments.

A lot (A LOT!) of our kids are escape artists on a Houdini-like level.  We can put up gates and locks and other barriers, and our kids, with their unique perception of the world around them, can see the invisible, gaping hole we have left for them to walk through.  We can buckle ’em down in car seats six ways to Sunday, and they will still be able to squirm their way out like master contortionists.

Until we learn, or at least make a genuine effort, to see the world through the eyes of autistic people, our children will always see our own deficits as security experts.

***

Does that mean we need to watch our kids 24/7?

Sure…

But I defy anyone who says they can or do.

Is there anyone who can honestly say they are capable of that?  And if you think that you are capable of watching your child 24 hours a day, then do it after a week of daily meltdowns in public, less than 3 hours of sleep a night and hours of personally working as your child’s ABA therapist because you have to.  If you don’t take a calculated moment to breath here and there, then at some point, you WILL break – it’s not a question of if, but when.  Add to that the complete isolation from extended family and those once considered friends that many parents face and the parental duties become that much harder.

That’s why we take 30 seconds to pee in private or walk inside for less than a minute to sip a cold mug of coffee or step outside just to take a breath – those micro-breaks are what keep us from breaking,  and 99.999% of the time nothing happens and the world keeps chugging along.

***

There should be no judging or bashing of Mikaela’s family, her mother Bari in particular.

None.

Because it happens.

For so long society has brushed our kids and our families under the rug, into the closet so to speak.  Organizations like Autism Speaks have raised national awareness of autism, but that awareness, that understanding is still rudimentary.  Until society as a whole understands what it is many of our families go through on a monthly, weekly, daily, even hourly basis, they will continue to judge without compassion.  In this age of social media and digital news/reporting/blogging, it is a lot easier to spread negative, unsubstantiated stories without taking a moment to think about the consequences (or the truth for that matter).

Our community is with you Bari – we will not judge you; we will not bash you.  Mikaela could have been any of our kids; you could have been any of us; and when something happens to one of us, it happens to us all.  We have nothing but love for you.

It could have been her...

It could have been her…

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Amendment I

Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the Government for a redress of grievances.

The Bill of Rights

***

There’s a reason why the First Amendment of the Constitution comes first.  It is, arguably, the most important Amendment of them all, and 4 words, found in the middle of the amendment (the freedom of speech) have come to represent what our country is all about.  We have the right to speak our minds without fear of reprisal from the government.

It protects the right to speak freely, openly and against authority…

…it also protects your right to be an asshole.

So if you choose to write a blog ripping a family who has just lost their autistic daughter, and with unsubstantiated facts, call into question their parenting skills and suggest they should be investigated for negligence, well, that’s the First Amendment at work.  If you want to be mean-spirited and call outraged readers nasty, I mean really nasty names, well, again, that’s the First Amendment at work.  If you want to accuse others of cyber-bullying when people respond in kind to your speculative, anger inciting, hateful behavior, well, you guessed it, that’s the First Amendment at work.  Yes, the First Amendment protects your right to be an asshole.

But here’s the thing…if you do those things, then you’re an asshole.

I think the Lord said it best when he gave Moses the Two Commandments…

realcommandments

So if you are that asshole blogger, just remember this – the First Amendment protects your right to be an asshole…that doesn’t mean the First Amendment tells you to BE an asshole.

Be cool.

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