Saturday, April 28, 2012

Step 28: Who is this child with autism?

I always try really hard to remember that the true warrior in this battle of autism -- is the child who has autism.

He is the one who would rather flap the ribbon on the Christmas present rather than open it to play with the toy inside.

He is the one who feels pain and who bangs his head against the wall to try and make it go away or who bites his own hands in frustration because it never does go away.

He is the one would have to sit on a school bus going to school at three years old instead of going to play dates with others his age.

He is the one who couldn't stand to be touched, hugged, kissed; but yet who laughed when he fell against the corner of a wall and got a goose-egg.

He is the one who would spin around for hours on end, no doubt to try to escape the madness of the world around him.

He is the one people bully.

He is the one who could have been abused and I would never know it.

He is the one who could wander off and drown.

He is the one who must daily live with, overcome, and survive autism.

Not me.

As his parent, it is my duty to protect him, guide him, teach him, love him.  As a parent of that child who has autism, my role means more than any typical parent could ever comprehend a parental role being.  Now that my son is an adult who has autism, I'm not only his parent, but his guardian.  In essence, I took an oath to be his advocate.  His protector.  His guardian. I take that privilege perhaps even more seriously than I have taken being his parent, if that is possible.

But sometimes you can get so caught up in all of that guiding, teaching, protecting, advocating, that you can lose sight of who it is you are doing all of that for.  I remember when that reality hit me the first time, in what now seems like eons ago.  I was so busy rushing him to this doctor and to this therapy, that I totally forgot he was a little boy who might simply like to go to the park and play.  I remember sitting up so very late at night researching for him, that I had no time to be with him.  I remember one day thinking enough was enough.  That I had to find a better balance.  One that allowed me to do for him and be with him. One that allowed me to continue to change some things about who he had become (autistic) but one that took the time to simply understand who he was (my son).

I think society needs that same wake-up call.  Government surely does.  Insurance companies, agencies, educators, policymakers, and politicians especially. Society must understand that my son is not someone who doesn't belong because he's different. But rather someone who's difference is a difference that can make a difference.  If just given a chance!  Government must see that he's not a burden we gave birth to, but rather a human being whose health you have stolen with your vaccinations, your GMO's, and your environmental toxins.  Insurance companies deciding who gets treatments approved and who doesn't need to realize that he's not someone you can deny simply because his diagnosis is autism and not asthma. Agencies who are in existence solely to help him need to understand he's not something to regulate with more paperwork to put in a file.  He's someone you should be helping now instead of getting paid to merely put him on a list to help later.  When it's too late.  Educator's must realize they are mandated to teach, not babysit. Students who have autism can learn, and if they're not making progress with the way you're teaching them, it doesn't mean they can't learn, it means you're not teaching them in the way they can learn.  Policymakers & politicians are greatly confused in what their role is.  It's not to give someone only one choice on where their loved one with autism lives or receives the help they need by only funding state schools and institutions. It is to use that exact same amount of money to provide that home or that help where that person's caretakers feel is the most appropriate place to use it.  My son is not someone to be placed somewhere.  He's a person who wants to live somewhere. He's a person who wants the freedom of choice whether he has the capacity to make that choice for himself or not.  That's why I became his guardian, to ensure those freedoms for him.  He's not a budget item to be cut session after session.  And to candidates, he is most certainly not someone you don't have to pay attention to or represent simply because he can't give you anything or vote for you.  He is the person you most surely should represent first and foremost.

He is someone who loves to go on field trips.  Who is scared to death of showers.  Who loves to take long baths and play with the water as it comes out of the faucet.  He loves to laugh, jump on the trampoline, and he loves, loves, loves it when his daddy comes home from work and wrestles him.

He is someone who goes in his brothers room and wonders why he's not there to turn the stereo up loud so he can feel the vibration of the speakers.

He is a child of God, a boy who has brown eyes that light up when he laughs, my son who I love, an adult who has rights.  He loves to climb up as high as he can because I know in my heart he sees Angels and wants to be closer to God. 

He is someone who has definite likes and dislikes, who communicates in his way, to those to take the time to learn his language. 

He is someone who has hopes, fears, and dreams.

He is someone who deserves kindness, dignity, and respect.

He is not a crippled caterpillar, but rather a beautiful butterfly.

Why do I share all these things about who this child of mine with autism is? 
Because I think we've lost that focus in National Autism Awareness month.  Government Agencies and Autism organizations have made it about who they are and what they want, and not about who they are supposed to be serving and what they need.  Very little about this month that I have come across has been about the child with autism who is right here, right now.  If it were, I would not see money walk right out of the community it was raised in, more articles about more genetic testing for the future, and nothing on environmental studies or vaccine policy revisions to help now.  If it were, I would not have seen anything lit up blue, but rather more recreational programs in my community for my son to light up while participating in.  If it were, there would have been biomedical conferences in my medical center that target teaching physicians how to proactively treat patients who have autism.

If autism awareness month were about my son who has autism, all those letters from all those autism organizations would have been asking me what I needed right here and right now to help him.  Not asking me for money I don't have to help them in their own agenda's that might help my son years from now.  Or most likely, will not help him or anyone else - ever.

I'll leave you with a writing of mine that Catie MacKrell put into a you tube production that highlights just who it is this month is supposed to be about.

Click here to watch "God's Beautiful Butterfly"

I know the people in this video.  They are still here waiting.  They were young when this was made and now that they are older like my own son, little has changed in anyone understanding or helping to provide for what they need.

It's time we better understood who that person with autism is and what they need and want.

It's time to transform how we represent and serve those who have autism.

Only then can one start the process of doing.

Doing now.