Having an autistic child is not the end of the world--far from it. It is my hope that through this blog, at least a handful of people will get to understand that. My child is amazing, she brings us tremendous joy. We have good days & bad days, but we CHOOSE to focus on the good. Our belief is that by loving our daughter, giving her the most comfortable environment we can, and by most of all accepting her differences, she will continue to blossom--in her OWN way.

1/29/08

Thank you, Mike McCarron

I wasn't going to write about this. But, the more I have thought about it, I really wanted to share. Every once in a while, I second guess myself. This is in all areas of my life, my relationships, my children. This is not exclusive to autism, or the paths we've chosen regarding autism. At any rate, I found myself wondering if I was doing any good. I contemplated quitting blogging and just moving on.

I'm a free spirit at heart, and truly hate to see parents on different "sides" of the autism debate fighting. So much time, energy, and emotion is wasted, and our focus is lost. Isn't this about our wonderful, amazing children? Can't we find some common ground? I so often just want to scream "can't we all just get along??" I do not hate anyone, I may have distaste for others' views, yes. However, I do not hate them just for their opinions, despite how misled and inaccurate I may feel those are. I do not wish these other parents any harm or misery. I also don't necessarily feel that one is a bad parent or terrible person for venting about their life or about autism (when it is done in a respectful and non-degrading, mature way).

I don't instantly think someone is horrible if they are trying biomedical "treatments" for their child. It does make me sad, I have concern for both the child and their family. It's heartbreaking to me hearing many of these parents speak toward autism, and worst, their own child. I always look to see the other side, their perspective. I haven't walked a mile in their shoes, perhaps I have no clue. So, I am sympathetic (to a point), and often try to keep my mind and heart open. I believe I am not in the position to truly judge anyone. At the core of it all, I seem many similarities between myself and say, Jenny McCarthy. We are, after all, simply two moms with autistic children, doing what we feel is right for our kids.

With all that said, I also have my eyes wide open, and see very clearly what is going on around me. I see how autistic adults are mistreated, disrespected, discriminated, and misrepresented in society. I see the abuses that autistic children and teens have endured. Sadly, I know of far too many autistic people, of all ages, who have been murdered. This is reality. This is what is happening now, today. This is why I write. This is why I will continue to fight.

Dozens of purported autism charities and groups collect millions upon millions of dollars. Year after year, where does this money go? Have we seen a sharp increase in the last few years of services for autistic adults? Are families with young children being helped or supported any more than they were five years ago? Are schools that much better equipped to handle the needs of students along the autism spectrum? Is the public truly more "aware," prepared, or better accepting of autistics? Where I live, and from others I speak to all over the U.S., the answer is a sad and resounding NO.

Until I can say that yes, true change is happening and I am hopeful for my child's future and the future of all autistics, I will keep advocating. I am hopeful for my child's own future, it is her future in society that I am concerned about. I worry about her education, her vocational prospects, living arrangements, and overall quality of life as she reaches into adulthood. What kind of world will be there for her? It's certainly not the world that is out there right now. I'll be damned if I don't make real, positive change, so that she is able to continue flourishing and making the most of her strengths in her teen and adult years. My legacy for her will be that she is accepted, and truly appreciated, by the public. I will work tirelessly for this.

Speaking of tirelessly...sometimes this (fighting for change) feels like a heavy burden. I hit one of those points late last week. I wondered if I really was changing things for my child. Was there much point to all I was doing? I stumbled onto some very negative writings, and honestly felt hopeless about so much. How can I really convince people, so full of contempt and vile, that they're wasting all their energy and time on the wrong things? Fight for our children, not against them. Rally for their rights, battle for acceptance so that our children will have a real place in society. I was contemplating a lot. One of which was to just quit typing, and let it all go. Sometimes, the arguments that go on between us parents all are so very tiring to me.

I took the long way to get to my point, but here it finally comes. Each time I reach a moment like this, I am reminded in some way of why I write, and why my voice is important. I want to thank Katie McCarron's grandfather, Mike. He wrote an open letter to the Autism Hub, of which I am proudly and graciously a member of. His letter came at just the time I needed to hear those words. I, like all the other hub members, were moved beyond words by his message. He has inspired me, and really put any doubts I may have had to rest. I have printed out Mr. McCarron's letter, and it hangs by my desk. It will be there, everyday, along with my daughter's picture, reminding me not only why I do it, but why it is vital I continue.

Thank you, again, Mr. McCarron, for your inspiring and encouraging words.

1 comment:

abfh said...

Yes, it is depressing to see the extent of the negativity out there; but all civil rights movements have had to contend with similar ugliness.

As Dr. Martin Luther King Jr. said, "The arc of the moral universe is long, but it bends toward justice."

Many thanks to you and Mike McCarron and everyone else who is not giving up.