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Posts Tagged ‘diagnosis’

There is a certain freedom I feel when I run – the rhythmic beat of my feet, the wind in my hair, the straining of my muscles and lungs, all contribute to a feeling that I am free to go, at least for a short while, wherever my feet may take me.  For a while, running served solely as my version of therapy.  Along with the everyday struggles we all experience in life, our family also has an autism diagnosis.  I will readily admit I struggled with the concept that my baby girl was not going to lead the life I had imagined for her.  It took me some time to adjust my way of thinking…evolve, if you will.  Initially running gave me an outlet, a place where I could funnel all my frustration and anger and return physically spent but mentally refreshed and recharged.  It wasn’t long thereafter that I realized that I could use my running, the activity that had given so much to me over the course of a year or two, and use it to help my daughter and those like her.  Running would not only help me deal with my daily struggles with my daughter’s autism diagnosis, it would help make the world a better place for her.

In the very beginning of our family’s journey with autism, my first thoughts were focused on a cure.  I was scared, not for me, but for my baby.  How on God’s green Earth was she ever going to make it without being cured of this…this…thing?  My initial reaction to Brooke’s diagnosis was because there was so little out there in the way of awareness and accommodation.  For months I would cry when nobody was looking, whether it was in the bathroom in the middle of the night or during the day when I was home alone.

Eventually I came to understand that what was best for my baby was autism awareness.  What would a cure mean anyway?  Who would I be left with?  Through our initial interactions with Autism Speaks, I became enamored with their awareness campaign and their dogged pursuit of health insurance reform on a state by state basis. In 2010 I began running for Autism Speaks in support of these two things, knowing that awareness and health insurance coverage for autistics would make my daughter’s life easier, better, more accessible.

Since Fall of 2010 I have run three New York City Marathons, two Boston 13.1 Half Marathons, one 100 Mile Ultra-Marathon and streaked 167 straight days while using the Charity Miles App, raising thousands of dollars, all in support of Autism Speaks because I believe in awareness and I believe in health care coverage for autistic people.

Awareness leads to understanding which in turn leads to compassion and empathy which hopefully evolves into acceptance and inclusion.  Health care coverage means families worry less and have more time to focus on what is most important – their family.

Suzanne Wright has painted me into a corner.  She has made it clear that her focus is on children and on a cure.  She has chosen to ignore self-advocates and the whole of adult autistics.  I understand that the autism she and her family experiences may be different than that of mine.  I even understand why some families seek a cure – I was one of those people once upon a time.  There’s a reason why they seek it, and for some, it has nothing to do with autism and more to do with how society, and certain advocacy groups, views autistic people – there is a difference.

Some day, Brooke will be an adult.  She will still be autistic.  My hope is that she will be able to advocate for herself and others like her if she so chooses.  I hope that people will listen to her just as intently then as they do now.

Suzanne Wright has painted me into  a corner because in her plan, there will soon be no room for Brooke; there will be no place for her in Suzanne’s world view.  Why does this matter?  Because Autism Speaks has the biggest platform, the loudest voice and the most money.

Throw me a bone, Suzanne.  Tell me you understand that there is more than just one autism.  Tell me that you understand that our children will grow up to be adults.  I know many parents mourn the child they thought they were going to raise.  Honestly though, how many parents, of any children, actually end up raising the kids they imagined they would have. 

There are times, Suzanne, where I and my family feel lost.  That doesn’t mean we are lost.  There is a huge, HUGE difference.  Throw me a bone, Suzanne.  Tell me that the opinions of autistic adults, no matter how they communicate, matter.  Tell me that you’ve gone back over your last op-ed piece and realize that your words were too harsh, too exclusive, too narrow.  Tell me you want John Robison back and that you promise to add several more autistic adults to your board so that you can better direct what it is that Autism Speaks stands for.  It’s right there in the name, Suzanne.  Autism Speaks.  Please, throw me a bone.

Running is where I find freedom – it is a joyful experience for me.  You can see it here after 26.2 miles of spreading autism awareness.

...after 26.2 miles of spreading awareness...

The New York City Marathon 2013…after 26.2 miles of spreading awareness…

Where does that energy come from?  My daughter…my autistic daughter who will someday be an autistic adult.  Someone who is only about 10 years away from not fitting into your model anymore.

What am I supposed to do Suzanne?  What am I supposed to do?  Throw me a bone, please, because you’ve painted me into a corner.

I leave you with this thought that came mind this morning:

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writing_a_letter

Dear Brother,

We are not wired for this.  Our problem solving skills do not match up well with this unexpected challenge that has been unexpectedly thrust upon us.

What do you mean it can’t be fixed? 

What do you mean there is no cure?

I know exactly how you feel.  Even though my head knows better, my heart still wants to fix it…fix her, just like I know you want to fix him.

It is what we do as men – we fix things.  If something is broken, we fix it.  If we can’t fix it, we probably know someone who knows someone who can.  Flat tire, broken hose, leaky pipe?  No problem, pass the tools.  If it’s something bigger?  Pass the phone, I know a guy…

***

Dear Brother,

This is different.  Our kids aren’t machines.  It took me some time to come to the realization that our kids aren’t broken; they are simply different.  Can that difference make life harder?  Yeah, right now it can; but difference, whether it be race, gender, orientation, height, weight or autism can do that.

But different doesn’t mean bad.

***

Dear Brother,

Don’t be afraid of labels.  It took me time to realize that when Brooke received her autism diagnosis, she was still the same girl she was before the doctor said, “autism”.  The label doesn’t change our kids dear brother.  In fact, the label empowers them…empowers us.  The label gives us a powerful tool in helping our kids get the services they need.  The label can turn resentment of strangers into compassion, helping them understand that when our kids have public meltdowns, it’s not because they are bratty or that we are bad parents, but rather because the environment has overwhelmed our kids’ capacity to cope.  The label is not about pigeon holing our kids…it’s about setting them free.

***

Dear Brother,

It takes time for us to get to the place where our kids’ mothers are.  Truthfully, we will never occupy the same space.  We are not wired the way they are.  Intellectually we will know, but a small part of our hearts will always betray us.  But that’s okay.  Just like our kids, we are different.

Autism is part of who our babies are.  Admitting that doesn’t change them.  Admitting that doesn’t hurt them.  Admitting that doesn’t mean you love your kid any less.  Admitting that doesn’t mean you will stop searching for ways to make his life easier.  In fact, admitting that will in all likelihood hasten the influx of tools that are available to you, your wife, and most importantly, your son.

***

Dear Brother,

It’s okay to feel the way you do…it is how we are wired, but ultimately, denial only hurts the one, beautiful creature we are trying to protect.

Sincerely & Respectfully,

Luau

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My daughter has autism.

And according to TIME Magazine, she is crazy.

This is the screen shot of John Ashley Cloud’s article on the DSM-V:

Screen shot 2012-12-04 at 9.08.34 AM

click on image to link to the article

 

First item up in the article?  The redefining of autism and the possible affects of such redefinition.

***

Do I believe that Time Magazine really thinks that my little Brooke is crazy?  No.  Do I think that the author John Ashley Cloud truly believes my girl is crazy?  I’m pretty sure he doesn’t.  Do I think that he or whoever entitled his piece is a complete and utter asshole?  In the words of Sarah Palin, You Betcha!

The article in and of itself is not a bad one.  It’s fairly matter of fact in its approach.  But that title…that title!

I have nothing against the word “crazy”.  I use it all the time.  Random acts of violence?  That’s crazy!  A buddy of mine running a sub-3:00 marathon his first time out?  That’s crazy!  Preparing for the Mayan apocalypse on December 21st?  That’s crazy!  The Giants beating the Pats in the Superbowl on late 4th quarter drives?  TWICE?  That’s crazy!

Setting back years and years of hard work by those in the mental disability and disorder community with the simple stroke of a keyboard?  THAT is crazy!!!

As a society we have inched ever so slowly toward a more inclusive society.  More and more we are realizing the gift of having all people participate in our communities.  Slowly we have inched toward removing the stigma of either mental illness or disability or disorder.

Cloud’s article does nothing to change that, but the title does that and more.  We live in a headline society.  That is not a gripe, that is a fact.  Just look at this past election cycle.  So many of us get our news and information from either the headlines or from the 50 word bullet points at the beginning of an article.  The only things we WILL read are those articles we find most interesting; ones that reinforce our own ways of thinking.  That’s why a title like Redefining Crazy is awful, disrespectful and downright dangerous.

People will skim over this article and walk away thinking, wow, autistic people ARE crazy…I mean they flap their arms and run around and make strange noises. And they will hold on to that headline because that is what sticks in their head.

Now before you accuse me of joining the ranks of the PC Word Police, I want you to think about what the word “crazy” means to you.  I’m sure there was a time when it was a clinical word.  Is that how the word is used today?  Would you go up to the mother of a child with what was formerly known as Asperger’s and tell her that her son or daughter is crazy?  For those of you who know my Brooke, would you say that she is crazy?

Crazy is defined in the dictionary as:

mentally deranged; demented; insane.

I would not put my Brooke in that category, but thanks to Mr. Cloud, someone who doesn’t know her, but knows her diagnosis, might.

I hope that TIME and Cloud will change the title of his article and issue a general apology.  TIME used to be such a wonderful, even handed magazine, but lately they’ve been acting like a mud-slinging headline grabbing rag.  I called them this morning to cancel my subscription.  I hope you will consider doing the same.

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