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Penthesilea
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Living with Autism -- The Parent's View
Jan 1st, 2007 at 10:42pm
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This is where I will record what it has been like to be the parent of an autistic person. In my case my daughters, MoonCat and Spirit, are both autistic and were diagnosed at the same time. There weren't a lot of resources available when the girls were little and now that they are grown -- there are few resources available for adults. I hate being on the cutting edge.
The fact of the matter is that we are in the middle of an epidemic of autism. In the late 80s when the girls were diagnosed, the occurance of autism was 1 in 40,000 births and it wasn't thought to run in families. The most recent figure I've seen from the CDC is 1 in 166 births and there are families out there in which all of the children are autistic.  If you don't know someone affected by autism, you will. Soon.
No one knows what is causing it. No one knows how to stop it. There are treatments, some controversial, some not. The effectiveness of these treatments vary from individual to individual and there is no way to predict who will be helped or to what degree.
When the spirit moves her, MoonCat will be starting a thread to record what it is like to be autistic. I'm looking forward to it.
  

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Penthesilea
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Re: Living with Autism -- The Parent's View
Reply #1 - Feb 19th, 2007 at 4:14pm
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We watched the report on this on ABC News last night. At the end they said that they could have drug treatments in 5 to 10 years. I hope so. And I hope the treatments are effective for adults as well as young children.
This article says that the incidence of autism in Britain is 1 in 100. It is estimated to be 1 in 150 here in the U.S. It is 1 in 94 in New Jersey, one of the states used in calculating the U.S. estimate.


http://news.bbc.co.uk/2/hi/health/6369347.stm
  

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Re: Living with Autism -- The Parent's View
Reply #2 - Feb 20th, 2007 at 2:07am
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Right now:
Spirit is in her room acting out a Power Puffs Girls episode (on DVD) at the top of her lungs.

MoonCat, in her room next door, is yelling at Spirit to pipe down.

I am trying to keep some sort of peace while..
a.) fixing dinner and
b.) trying to get a little work done on the site.

It is a good thing I don't drink or I'd be a total lush by now.....

But it could be worse and has been.
  

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Re: Living with Autism -- The Parent's View
Reply #3 - Mar 23rd, 2007 at 4:18pm
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Not a good day, coping wise. No real reason in particular. No spectacular meltdowns. No screaming in stores.. It is just that today -- right now -- the prospect of dealing with autism for the rest of my life is almost more than I can take. I don't blame the girls. It isn't their fault. And if you accept the teachings that we plan out the circumstances of our lives before we are born and that everything that happens is needed to accomplish our life goals -- and I do accept those teachings, hard as it is -- then I have to acknowledge that this is what I signed up for. Right now, that doesn't help.
So, I'll suck it up and soldier on, just like I have for the last 20 years. Even though, barring a medical breakthrough or Divine Miracle, I can hope for nothing but more of the same for the rest of my life. I might be able to claim a tiny portion of the dreams I had 22 years ago before Autism became the elephant in the living room but that is all....
  

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Re: Living with Autism -- The Parent's View
Reply #4 - Apr 17th, 2007 at 2:25pm
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I'M SO SORRY!! I DIDN'T KNOW IT WAS SO HARD ON YOU!! DAMN YOU, AUTISM!! DAMN YOU FOR TAKING AWAY MY LIFE!! DAMN YOU FOR MAKING MY SISTER INTO A GIBBERING LUNATIC!! DAMN YOU FOR RUINING MY MOTHER'S LIFE!! OUR LIVES ARE GOING DOWN THE DRAIN BECAUSE OF THE GODDAMN AUTISM!! THE ENTIRE HUMAN RACE HATES ME BECAUSE OF THE AUTISM!! I HOPE WHOEVER THOUGHT IT WAS A GOOD IDEA TO INVENT AUTISM BURNS IN HELL!! DAMN AUTISM TO HELL!! Smiley Smiley Smiley Smiley Smiley Smiley Smiley Smiley Smiley Smiley Smiley SmileyI apologize for the outburst, it's just that I read my Mom's last post in this thread and I just gave way. I have been such a burden to her that she can't take it anymore. I can't deny it any longer. Autism has destroyed my life. I am forced to live with this for the rest of my life. The pain will never go away...
  

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Re: Living with Autism -- The Parent's View
Reply #5 - Apr 17th, 2007 at 2:44pm
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I gotta go hug my kid....
  

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Re: Living with Autism -- The Parent's View
Reply #6 - Apr 17th, 2007 at 2:59pm
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Mooncat, hun, I know by reading your mom's post it does sound like she's saying the autism has ruined her life.  But, that isn't what has happened, even if Penth doesn't see it yet.

What has happened is it has CHANGED her life from what she envisioned it to be.  Yes, this change is very dramatic, often quite difficult to live with, and ever present.  However, it is a change which has occured and must be met with gusto.

"No plan survives contact with the Enemy." - Sun Tzu, The Art of War

How does this apply?  Am I saying you or autism is an enemy?

Not in the slightest.

Master Tzu was describing a universal concept within a specific context (that of battle).  What it means is thus:

"One can make a plan, but the situation for which you've planned will cause your plan to be adapted or abandoned."

In the early stages of our development, all humans want specific things to happen.  For most, Power, Money, Wisdom, Love, and Fame are goals to plan for.  However, upon growing up, many of us learn only two of those situations are really worth obtaining.  Wisdom and Love.  Neither of these can be gained via planning.

Growing up, I wanted to be a rich and famous singer in a rock band.  Never having children, never getting married, being able to pick the woman of the night/week and moving on when bored.  But, then the enemy approached, and my plans fell apart.

My childhood dream's enemy was Black Rose and her daughter.   I very quickly learned my dreams were no longer important.  I still have a few of my earlier dreams which I want to accomplish ("I might be able to claim a tiny portion of the dreams I had..." as your mother puts it), but I know my life would not be a enriched without the loss of some of those dreams.

Trust me, a child's love for her mom or dad makes up for loosing dreams.
  
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Re: Living with Autism -- The Parent's View
Reply #7 - Apr 17th, 2007 at 3:13pm
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MoonCat again, this time with 50% less inflammation! Thanks. It's nice to know that my situation isn't as bad as I thought. I just had a difficult day yesterday and the hurt still lingers. I just don't know how my family puts up with this. I just want to feel better, that's all.
  

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Re: Living with Autism -- The Parent's View
Reply #8 - Apr 17th, 2007 at 3:19pm
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By way of explanation, MoonCat had a bad day yesterday because of the shootings at Virginia Tech. News of sudden, violent death whether it is accidental, a natural disaster or something like yesterday always upsets her greatly. She worries about the souls of the dead and wonders how they could be happy in the Afterlife when they died violently. We have talked about this every time it happens and it is her autism that keeps her from accepting what I say or coming to terms with the fact that knowing how the dead feel is something she won't know until she crosses over herself.
  

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Re: Living with Autism -- The Parent's View
Reply #9 - Apr 17th, 2007 at 10:23pm
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Damn autism! Me===> Smiley <===Autism

I have written a prose in the memorial section if you're interested...
  

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Re: Living with Autism -- The Parent's View
Reply #10 - Jun 21st, 2007 at 7:59pm
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Here is another piece of the puzzle.


http://news.bbc.co.uk/2/hi/health/6221064.stm


There are some links to related stories in the sidebar.
  

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Re: Living with Autism -- The Parent's View
Reply #11 - Jun 27th, 2007 at 3:17pm
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Here's another link. Research like this gives me hope that someday, Spirit will be able to tell me that she is thinking....

http://news.bbc.co.uk/2/hi/health/6245742.stm
  

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Re: Living with Autism -- The Parent's View
Reply #12 - Dec 29th, 2007 at 4:33am
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I showed the report about the "cure" for autism caused by Fragile X Syndrome to MoonCat earlier today and while I was getting some dishes washed she asked me if Spirit's autism was cured, would she be different?
I said that some things about Spirit would stay the same but some things would change. We would be able to talk to her for one thing. [Spirit isn't completely nonverbal but she's close and getting information out of her can be extremely difficult.] And her most trying behaviors would be gone if she wasn't autistic. We would be able to know what Spirit is thinking and feeling and we would know what gifts are locked in that head of hers.
Then I pointed out to Moonie that if her autism was cured, she would still have her art, and her silly sense of humor, and her "melodrama" but that it would likely be easier for her to cope with stress and to keep her attention on something that doesn't interest her but is still important. Like math and chores!
I told her that if her autism was cured, she could possibly fall in love some day and have a family of her own. And her father and I would be able to lay aside our worries about what will happen to our daughters when we are gone...
  

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Re: Living with Autism -- The Parent's View
Reply #13 - Dec 31st, 2007 at 9:15pm
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     The first post on this thread was made on New Year’s Day, 2007. Here it is, a year later and I find myself looking at the possibility that in 2 to 3 years, both MoonCat and Spirit could be cured -- completely and absolutely cured -- of autism. What a difference a year can make. Of course, once cured what will they -- and others like them, do? The first practical thing will be for them to fill in the gaps in their educations so they can get their GEDs. Once those are in hand, they and we can think about further education. MoonCat has her goal: The Herron School of Art in Indianapolis. She has the talent for a scholarship, maybe a full scholarship. We will have to see what is available when the time comes.    
     SpiritFire’s future is more of a mystery. If I were to guess based on her current, “non-geek” interests, I would say medical school. I’ve lost count of the number of times we have found her in the bookstore reading a medical reference or a book on anatomy. Whenever one of us has a cut or something, she is the one that brings the first aid kit and starts “doctoring” us. So, yeah, we could be paying for medical school in a few years.
     More tricky is getting them up to speed in social development. Moonie finds the prospect rather daunting and I can’t blame her. The possibilities I outlined -- living on her own, the full range of relationships, the possibility of a family of her own -- are overwhelming when you consider them from her viewpoint. She says that she can’t imagine herself pregnant. I told her that many, MANY young women and girls feel the same way and find themselves in that very condition so it isn’t an uncommon reaction! I’m expecting that the agencies that have been dealing with the rising tide of autistics will switch gears and address the needs/problems of the newly cured. They probably won’t manage it as quickly as needed but we’ve been dealing with agency inertia for a couple of decades now so we’re used to figuring it out on our own. It will be a completely new field. I can’t think of any other large group that has required this level of “education” in purely social interaction. And you can bet that once the cure or cures becomes available, the parents and/or guardians will move heaven and earth to get it so there will literally be hundreds of thousands of people ranging from children to adults in their forties and fifties needing these services.  The littlest children will have the easiest time of it, naturally. They will learn as we all have in the process of growing up. It is the older ones, the teens and adults, who will need the most help.  As a side note, Moonie has already said that she would volunteer to be a test subject for a cure. As her guardians, we would consent to both girls participating in such research.  I’m not going to complain about the challenges though. There appears to be a real chance that my girls can have normal lives -- men to love them, children of their own, work that they love and do well.  Those goals are worth anything we have to do to help them achieve them. And that Skywise and I will, someday in the far distant future, be able to go to our graves without the agony of wondering what will happen to our daughters when we are gone.
  

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