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Posts Tagged ‘autistic child’

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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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