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Posts Tagged ‘autism community’

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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You like to run – check!

You want to help the autism community – check!

You haven’t been able to get into the incredibly popular Falmouth Road Race, like, ever! – check!

Guess what? You have an opportunity right now, today (or tomorrow) to be able to get into THIS year’s race taking place on August 11th. 

How, you may ask?
There is a little start up company called Technology For Autism Now (TAN) that secured 4 charity bibs for the race.  I will readily admit that I know very little about them other than they are creating technology that makes it easier for our kids to communicate more easily with the world around them.  They are still looking for runners but registration closes tomorrow (July 31st).

What would be required of you?
Well, you’d pay the $50 entry fee and then need to raise $200 via their Firstgiving Page by October 31st.  That’s 3 full months to raise just $200 AND you get to run Falmouth (a race I have never been able to get into!)!!!

So who do you need to contact?
First email Racemenu at support@racemenu.com to let them know you want to do it and then go to racemenu.com/falmouth to register.  There are only 4 spots available as of this posting so grab ’em now while you can.  Who knows when you’ll get another guaranteed chance to run Falmouth!

I would be running too, but it appears I’m on my way to an appearance on the PUP list.

Now go!  Click on the link!  Go run Falmouth!!!

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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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