Low functioning Autism has got to be the most frustrating thing I have ever had to deal with. Everything in my life revolves around Mickie. I just keep thinking that there will be no place for him in the world if he stays the way he is now. So I keep looking for ways to get him out of himself, so when I'm gone he can fight for himself.
When he was diagnosed at 22 months I thought he would just start learning if he had intensive therapy, but he didn't and in fact got worse. By the age of four he was completely lost in his world. Chelation therapy did help get some of his eye contact back.
On Mickie's 10th birthday I made the decision to start doing something more about my frustration with his slow progress. I had stopped video taping him right after the diagnosis of Autism. The life just kind of went right out of me. I started making videos of him again. I signed on to Youtube and created a channel for Mickie.
The response to Mickie's videos has been interesting to say the least. Most people are very gracious, but some of the others are just plain nasty. Interesting enough some of the most negative comments have come from mothers of Autistic kids. I an not in any way ashamed of him, not by a long shot.
Some have accused me of portraying Autism in a negative way. I just record Mickie being himself or what I like to call, "Mickie in the Raw". I'm guessing Mickie is not what the majority of people with Autism act like. I just got tired of seeing it portrayed as something just perfectly normal. It is what is; and, what is not is a dirty little secret that has to be hidden so that it won't offend the sensibilities of some.
It's a cruel world out there! It's evident when I take him out in public and people do stare and give dirty looks and shush him, because he can get really loud and there just no way to stop him. Perhaps they have never seen anyone like Mickie, because Autism is portrayed as something else.
Autism isolates the entire family, not just the afflicted child. It is difficult to visit and to have visitors. It is very hard and expensive to find appropriate childcare.
It is very tough to describe what it feels like to see your child suffer and not be able to help him. The pain of knowing that no amount of therapy and no amount of money will ever give him back the potential he was born with, can seem at times, unbearable. The love that I feel for this little boy is more than I could imagine, but at the same time I morn every day for the child he once was and might never be again.
Once in a blue moon I get a glance at the precious little person trapped inside his confused body - that person who views the world so different than me. And it's at those moments that I remember why I was meant to be his mother. It's hard to see everyone else's life around you go on as if everything was just fine, yet you know it's not ever going to be the same for you.
Sometimes when I touch bottom and I imagine this little guy as a grown man, and me too old to watch over him, I realize that this is as close as I have ever been to hell.
Am I bitter? Yes! Am I happy? No!! This days happiness is just a word, a front for the rest of world to see, because in the end; I just want my son back.
Zurama
4 comments:
He's a great looking kid. Don't assume he'll be doing the same thing in 20 years. Autism is a developmental disorder, so concentrate on the development part of your son. He will grow and mature and develop skills he doesn't have now. Things are not as bad as you imagine them. Peace.
I first became aware of other high functioning autistic individuals on the internet about fifteen years ago. I have to say one of the things that frustrated me no end was the fact that I could barely find one person who had anything but happy happy joy joy stuff to say about what it's like to be autistic.
I tend to lean the other way, I suppose. Sorry. There's a balance that needs to be struck, and I'm working hard to show the other side, so everything will stay in balance :/
The other day at the Autism Society of Greater Cleveland, I saw Sean Barron speak. It was so nice to hear something other than happy happy joy joy from another autistic individual.
While people like me probably won't do much good for your state of mind, I, personally, would be extremely skeptical of the happy happy joy joy people.
And cheer up. I'm sure Sean wasn't always as high function as the man I saw last week.
Robin Nemeth
I suggest you watch some of silentmiaouw's videos on youtube, and look at her blog ballastexistenz.autistics.org. She's a 'low functioning' autistic woman and you'd probably learn a lot from her videos. She doesn't consider herself 'afflicted' with autism and has spoken out against the idea that autism means the person is 'dead' or 'missing' ('I just want my son back' you said).
More like "Low Functioning Headline Writers". Funtioning?
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