Monday, April 1, 2013

My Resonse to 10 Things You Should Know About Autism

I read  10 Things You Should Know About Autism on Rob Gorski's blog Lost and Tired.  Rob is the father of 3, yes 3, wonderful boys who are all on the autism spectrum. If you have never been to his blog I urge you to check it out. It is a blog for everyone: those who love a person on the spectrum, those who know someone on the spectrum, those who don't know anyone on the spectrum and may not even know what the spectrum is. Quite possibly his blog is especially important for the last group. Those of us loving someone on the spectrum have their own stories. We know what autism is, up close and personal. Blogs like his give us information when we need it, friendships, and most of all acceptance; the understanding of our need to laugh, cry or shout at the top of our lungs, (often all in the same day). People who are not lucky, yes I said lucky, enough to love someone on the spectrum need knowledge so they can understand. Let me stop a moment to explain why I said lucky as I know some people are going to be going, "Lucky? Is she out of her freaking mind? How dare she say someone is lucky to raise a child, (or love a person), on the spectrum! Does she not know how hard this is?" Yes, I know how hard it is. I know the heartbreak. Mostly though I know the love. The honest and pure love that comes from that person. When Junior first told me I could give him a hug if "it was fast and really hard, all over", you can only know my overwhelming joy if you know autism. It was a moment when I knew I was lucky. When we read The Kissing Hand by Audrey Penn and he insisted on loading my palm with kisses and me loading his before he left the house, (or he positively would not go), I knew I was lucky. These moments and others like them,  from a child who truly does not like to be touched because "it feels funny," let me know I am lucky. I raised other children, including his mother. I hugged and kissed them, (and yes felt lucky with them too), but these hard won signs of love will forever remain my luckiest moments. When we were on the bus coming home from the store, Junior loudly proclaimed, " that lady smells." He then looked through the bags until he found what he wanted. I am certain the well groomed, expensive perfume wearing tourist did not understand the significance in Junior handing her a bar of soap but I did. Through the embarrassment, (and admittedly choking on laughter), I praised his reaching out to help someone. Oh yes, I am lucky. I am lucky to love a child who works harder than you can imagine to do things that come so easy to others. Lucky to know someone who has no filters and teaches me much about honesty, an honesty that permits him to show care to strangers in his special ways. I am lucky because I know now exactly how to see and appreciate the uniqueness of each of us. This child on the spectrum teaches me a new way to see the world. He teaches me love, acceptance, humor, and joy in things I took for granted. He has a unique look at the world and everything in it and I am lucky. This unique vision of things every person on the spectrum has and yes you are lucky when you share it with them. Note I never said the path was easy or painless. Some days seem endless. I just try to refuse to let them overshadow the good times. Here are the Rob's 10 Things with comments:

1) Autism is not like you see on TV. Don’t think you know about Autism because you’ve seen Rain Man.
    I laughed when I read that. It took me back to the day I first heard autism. Junior had spent hours every day for days         with the doctor. It was a fight getting him there. It was a fight getting him to leave. It was nights where he was still wound up and could not settle down making the days last 18 hours. Junior was busy, quickly buzzing around grabbing things in  the neat office with the toys all nicely placed. By the time we left only the shelves he could not reach still had toys neatly placed. The rest were grouped together in little areas all over the room. Each toy carefully selected and placed with others in an odd assortment that made sense to Junior. They were not played with, just placed. It would take navigation to leave the office. I was sitting in a chair blocking the door, the doctor sitting in one blocking his desk. He said, " we have tested him and observed him carefully. We all are certain your grandson has autism." Immediately my thoughts swung to the only thing I had ever known of autism.  Rain Man. Oh my God, no! Please, no! But all I said was, "what is the most important skill for him to have? " 

2) Every person with Autism, is as unique and beautiful as a winters snowflake. Different symptoms, personalities, likes, dislikes, hopes, fears, dreams, strengths and weaknesses. Please don’t generalize them.
      I learned this when I met my friend Robin. She has a limited verbal child on the spectrum. Until meeting her, I did not know anyone else with an autistic child. Her beautiful daughter is different from Junior though they both share some of the same difficulties. Robin and I are also different yet share some of the same things. As time went on I met more parents and children. What I learned is they are all unique PEOPLE. 

3)The Autistic children of today are the Autistic adults of tomorrow. Autism doesn’t go away on their 18th birthday.
     I think we tend to think of them as children because parents have been so vocal in the past few years. We are fighting for our children so we must be loud and pushy. This statement is perhaps the one we need to push. 

4) An Autism related meltdown is most often a sign that the person is in extreme distress and is not necessarily a discipline issue or a sign of bad parenting.
     YES. YES. YES. Please do not stare or make unkind remarks. Most likely neither of us is blind or deaf. 

5) Never assume that just because a person with Autism can’t talk, they can’t hear you.  Your words can and will hurt, so please be kind.
       See #4

6) Not every person with Autism is a savant. This is a stereotype and in fact, quite rare.
      Please stop asking what his special talent is. He is not an act in the circus. Though I suppose if he chooses it, he can be one day. 

7) People with Autism are very, very intelligent. If they have a problem learning, perhaps it’s the way you’re teaching.
      He sees the world in his own way. Maybe think outside the box and try to see what he sees. If you take the time, he will help you.

8) A leading cause of death in children with Autism is drowning. Please be aware of this, especially if you live near a body of water, of any size.
    Water is a magnet for Junior. Which I thought was funny since he hated the shower. Then I learned he could not handle the feeling of the water hitting his skin. He also could not handle the sound of the water running or the bathroom fan. But the ocean - magnet. The water out by the glacier - it had chunks of ice so it was cold, he walked in it until his grandpa grabbed him and carried him out. The water was to his his waist. That was when we learned the danger of water. 

9) Simply because a person with Autism can have difficulty showing emotion, doesn’t mean they don’t experience it.
       Proof of this you read above.

10) Every families experience with Autism, can and will, quite often be different. Some experience struggle and others, not so much. Never assume that one families experience with Autism, mirrors that of another families.
        Absolutely true.

Read more: 10 Things You Should Know About Autism » Lost and Tired
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If you are not lucky enough to have someone on the spectrum in your life, during this month of autism awareness, I urge you to do more than just be aware of autism. I urge you to learn more about it, (during April there is always a bunch of information readily available). And I cannot urge you enough to accept people who are on the spectrum. They are unique individuals who will enrich your life if you let them.  

There are photos of Junior under the tab One Face of Autism. 

Please feel free to leave a comment below!

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