When Does "Awareness" Stop Being Enough?

Autism is a complicated disability. Even within the same functioning labels, there are great variations. There is a rift within the community because many people feel their autism, or their child's autism, is THE autism. Anyone not affected by their specific brand isn't really autistic, and doesn't really get the challenges that come with the diagnosis. The real diagnosis, that they possess. 

This is how it feels to me, anyway. There might be talk about how functioning labels are inaccurate, or how "if you've met one person with autism, you've met one person with autism", but the truth is there are those who hold tight to those labels. Who believe the variations in the disorder are because most individuals diagnosed aren't really autistic. Not like their kid. The struggles other families face can't compare to their struggles. If there was an award for most affected by autism, they would win.

We can say we wish the divide within the community would close, but until there is acceptance that all individuals, and all families affected by autism are, well, affected by autism, things will never change.

We say we want autism awareness, but at what point do we move on from that? 

We say we want acceptance from society, but how can that be achieved when those within the community can't even accept that what autism looks like in their child doesn't have to be what it looks like in someone else? 

We say we want services and support, but only rally behind whichever services and support we feel benefit our own kids.

Insurance reform is great, unless you choose Floortime for your child. Or any therapy beyond ABA. 

Reaching out to the newly diagnosed is great, unless your kid is turning 18 with no place to live, and no educational or vocational support. 

Walking around a track for autism awareness is wonderful, until you realize all the money you've raised isn't really helping your family. Or any family. Not those on the ground who need real, tangible help. Not if you don't care about a cure, and just want to make sure your kid is alright after you're gone. 

Slapping a magnet on your car is all well and good, until you spend your life savings on fighting a school district over your child's education, because all the awareness in the world doesn't help people understand what your kid really needs to succeed.

And all the awareness in the world doesn't prevent our kids from being thrown in seclusion rooms, or restrained, or treated like 2nd (3rd? 4th?) class citizens in the classroom.

When do we stop kidding ourselves and realize the kind of awareness some people/organizations spread is based on fear, putting autistic individuals in jeopardy? The message society gets is that these kids, these adults, are burdens no one can bear. Broken human beings who must be cured, or eliminated from the gene pool. Who don't deserve a full, happy life. Not when their sole purpose on this earth is to destroy families, and hemorrhage money. 

When we will wake-up and realize we can't have it both ways? We are living in a fairy tale if we believe using this type of language doesn't negatively affect our kids. 

There cannot be peace where there is fear.

There cannot be love where there is hate.

There cannot be acceptance when all people want is a cure.

We have failed our kids when awareness becomes enough. 

When one type of therapy becomes enough. 

When one view of autism becomes enough. 

When we silence those who live with the disability, and listen only to parents, or researchers, or teachers, because we don't believe, really believe, those affected have anything to say. 

When we write off people based on test scores. Verbal ability. Physical appearance. 

At the end of the day there are those who think only they know autism, and only their message needs to be shared. Only their therapy needs to be covered by insurance. Only their desire for a cure needs to be talked about in mainstream media, or their view of what awareness is needs to be funded. When autism is the Big Bad, the worse we make it sound, the better. 

Except when you don't see it that way. But then, who is there to support that view? 

I sound like a broken record, but I cannot say this enough. We need to be honest, really, truly honest with ourselves about what we are putting out there. What we are telling the world. What our message means for our children now, and as they get older. 

We also need to decide if the good any one organization does outweighs the bad. We have to ask ourselves, are we driven by our comfort zone, or the changes we want to see moving forward, even if things get sticky?

It's for everyone one of us to decide, individually. I think sometimes we just get stuck in what we know, and fail to look beyond that.

Do you have to agree with me? No. Do I hope all of you take a few minutes to think about what you believe, who you support, and why? Yes. Just like anything else in life, I want everyone to think independently, and decide their truth. Not based on popular opinion. Not based on any one blog. Just based on what feels right in their heart. 

I know taking time out to really think about what I believe has brought about serious change. It's never easy, but always worth it. 

Just like our kids.

When Murder Becomes the Only Option?

Let me start out by saying, 100%, I do not condone any parent murdering his/her child, for any reason. I don't care how hard life gets, killing an innocent person is wrong. Period.

(Please read each link before continuing to read this post). 

A lot of us within the autism community first heard about Alex in this story. A young man left to languish at a hospital, not getting the care he required for medical issues, due to his autistic behaviors. It was heartbreaking to read about this mother's struggle to get help for her child. How could anyone allow a child to suffer like that? There were petitions and pleas for calls to be made to the hospital, begging for someone to help this child.

But, I admit, I lost track of the story. Life happens, and after the initial shock and outrage, it slipped from my mind.

And then this happened.

I thought to myself, is that the same boy? The same one that was locked away in that hospital for so long, not getting care (according to his mother). It couldn't be, I thought. It couldn't be the same child. His mother was fighting tirelessly for him. There was no way this could be the same young man I read about weeks before.

But it was.

And I felt sick.

I'll be the first to admit I do not know what life is like with a severely autistic child. That is not my world. I would never claim to understand the lives of these children, or their families. But, I know murder would never be an option.

What upsets me, too, is how this family was failed. And not just by the government, or the hospital. By members of the autism community, like me, who forgot. Who got lost in our daily lives, while Alex's story faded into the background. We want services for our children. Help for families. Yet, most of us do nothing beyond posting a story to Facebook, or writing a soon forgotten blog post. Blog posts and status updates don't help families. They don't help autistic individuals like Alex (I am in no way using the lack of servies as justification. There is no justification for what this mother did. The thing that matters is this boy did not get the help he needed, and that's not OK. It's about him, not his mother).

I'm ashamed that I forgot about him until yesterday.

I don't deny life was hard for his mother. I cannot, and will not, defend her actions, though. Alex was a person, not a diagnosis. He was a human being who deserved so much more, including not being forgotten about by his own community.

We can all do something. Write a letter (many letters!), contact our legislatures, do what we can to fight for kids like Alex. There should have been somewhere for him to get help. Real help. Regardless of what his mother believed, or who disagreed with those beliefs. It's not about that. It's about a person!

You don't have to buy a plane ticket to D.C. and march on Capitol Hill to make a difference. Maybe it feels like our voices won't be heard, like one person can't make a difference, but a lot of voices will, have to, make a difference. Our kids shouldn't be murdered. There needs to be help for them! Kids like Alex...for whom autism is a matter of life and death.

(I know Age of Autism is not a favorite site to some, and I certainly do not go along with a lot of what they believe, but they have several posts on Alex's situation that I think are important to read, just because they provide more specific information on his case. In no way am I looking for a debate on bio-med, or anything else. It's just gives a bigger picture of what this poor kid was going through. What he was going through, beause in my opinion he should be the focus. Not the ones who decided to take his life).

Here, Here, and Here.

The Journey

I've been a bit overwhelmed lately.

Just a bit.

To make a long story short, we went to battle with our school district over K's placement. We were just d-o-n-e, done. There were a few incidents, that for K's privacy I won't go into here, that completely and utterly broke down trust. She ended up being scared of going to school. Scared of saying anything to any adult at the school. There was a change in her demeanor, from the first few weeks when things seemed to be going well in her new class. Things happened that the school thought were not a big deal, that were the biggest deal to us. So, we hired an advocate, and pushed for out placement.

At first, things didn't go well. If there ever was an us vs. them moment, it was our last official IEP meeting. When the school chooses to bring legal counsel, you know the gloves are off, and working together, collaboratively, is off the table. At least, that's how we felt, as parents.

We spent a nail biting week, waiting for any response from our district. A week that literally almost sent me over the edge, and that's not an exaggeration. A week where things went downhill fast, and where I thought we'd end up living in a ran down by the river, because fighting for our child was probably going to cost us everything.

Our advocate is great, don't get me wrong, but I was still scared to death. We had a good case, but our distrcit wasn't reacting in the way everyone assumed they would. Our pediatrican had pulled K from school at this point, saying she was exhibiting signs of PTSD, and so I had a child out of school, and radio silence from the district. We did all we could to garner a response, and waited. I don't know how many years that one week took off my life, but I hazard to guess it's no small number.

But, then, miraculously, everything turned around. The Superintendent got involved, and we had an emergency meeting with her, the head of special education, and the district psychologist (the one person I had been asking for at our IEP meetings, and the one person they always failed to invited). And they really listened to us. And agreed with us. And...we prevailed. Like, really, truly prevailed. I still have a hard time believing we won, and am always waiting for the other shoe to drop, but thus far, everything has gone well.

Currently, we are touring private schools for K, and she is recieving home tutoring in the interim. Or, she was until our awesome tutor got selected to sit on a jury. Here's hoping K clicks with whomever we get next, just as well. School selection is taking a lot longer than I anticipated. I figured we'd bang out the tours, and pick one within a couple weeks. So far we've only toured one school (with another on the docket this week), and I've yet to even hear from several others (one of which I am really liking for K, inparticular). Next week is April vacation, so this is definitely not going as fast as I would like, but at least we have a plan.

At the end of the day, we did end up spending a good chunk of money on a really great advocate. Getting K into the right program is our priority, though, and even though no one likes to write a big check, it was more than worth it. We had a good case, but hiring someone who knew the ins and outs of the law, and who was a calm voice in a meeting (when all I wanted to do was scream and cry), was priceless.

Hopefully, we can move on and find a great school for K. Fingers crossed.