John H.'s blog

Catastrophic Event - Are we prepared...

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Unfortunatly it takes an event to start thinking about the possiblility of en event....Today I was informed of the untimely death of the wife of a person I went to high school with, I had never met her and I have not seen this person for over 25 years but thru reconnecting on Facebook we learned that we both had son's with Autism, and since his son was a few years younger than mine we would discuss them growing up. Then his life was changed in an instant, and it begs the question....are you prepared for a catastrophic event such as the death of a spouse and what can we do to prepare?

 You have to ask yourself even if your children are young who is a person that I can trust with the continuing education and welfare of you child and what do I need to insure that happens, things like Living Wills and/or your normal Will does that include provisions for your child. My wife and I have co-gaurdianship ofour son and when we did that the lawyer asked why we are doing it people don't usually do it that way...and we told him that if something happened to oneof us the other could just take over without having to deal with all of the red tape it would involve, and we have a back up plan included in the paperwork as well if something would happen to both of us that his Brother and Aunt would be in charge of his care and finacial well being.  These are jsut a few of the things that we can do as parents that can help later down the road so that everyone is clear on the plan.  read more »

Parenthood-pilot episode

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I felt that the show captured the "moment" of realization of a diagnosis better than most shows have, I think alot of parents are going to relate to that scene.  Also the scene were Peter Krauses' character tells his father and the father finally gets that its not a phase the child is going through, while at least for me it didn't happen that quickly I think we have all had conversations with a relative that thinks your child is going to "grow out of it" then most of them have what I call a Lightbulb Moment when what you have been trying to explain to them fianlly clicks in....there are still a few that don't get it and probably never will.

Reading that writer/producer Jason Katims has a 13 year old with Asperger's I hope that he stays true to some of his own true life experiances and does not make it to glossy and overly dramatic.

If you missed it try to catch it online or On Demand playback the parts that didn't invovle Asperger's were well done also.

Daytona Champion/Autism Champion

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He drove one of the first...if not the first...race cars to feature an Autism paint scheme and message and now he is the 2010 Daytona 500 Champ Jamie McMurray!!

Different not Less

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I think that incapulates how the world should see a person with Autism no matter where they are on the spectrum. The Temple Grandin movie on HBO the other night could have been a 6 part mini series so that we could have seen more of the trial and tribulations that she and her mother went through especially in the 60's and 70's but I give the movie makers an A for what they did it was informational and inspiring....yes I cried....It may have shown better how our kids think and feel than any other movie out there, I truely believe that my son uses the images and scenes from all of his movies to help him make sense of the "real" world. .From now on when I tell someone that my son is Autistic and they ask "like Rain Man" I will say no

 "like Temple Grandin".

Tip of the Day

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Some of you are probably aware of this, and quit honestly I knew this as well but just wasn't completely prepared for it yesterday.....

Dr. Pepper does not make DVD players work better......but it does make a nasty smell.

 

Vaccine Report Retracted

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(CNN) -- The medical journal The Lancet on Tuesday retracted a controversial 1998 paper that linked the measles, mumps and rubella (MMR) vaccine to autism.

The study subsequently had been discredited, and last week, the lead author, Dr. Andrew Wakefield, was found to have acted unethically in conducting the research.

The General Medical Council, which oversees doctors in Britain, said that "there was a biased selection of patients in The Lancet paper" and that his "conduct in this regard was dishonest and irresponsible."

The panel found that Wakefield subjected some children in the study to various invasive medical procedures such as colonoscopies and MRI scans. He also paid children at his son's birthday party to have blood drawn for research purposes, an act that "showed a callous disregard" for the "distress and pain" of the children, the panel said.

After the council's findings last week, The Lancet retracted the study and released this statement.

"It has become clear that several elements of the 1998 paper by Wakefield et al. are incorrect, contrary to the findings of an earlier investigation. In particular, the claims in the original paper that children were 'consecutively referred' and that investigations were 'approved' by the local ethics committee have been proven to be false. Therefore we fully retract this paper from the published record."

Has autism touched your life? Share your stories, thoughts on vaccination study

Dr. Richard Horton, editor of The Lancet, said he reviewed the General Medical Council report regarding Wakefield's conduct.  read more »

R.E.M.-Green

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(Berry/Buck/Mills/Stipe)

I've watched the children come and go

 A late long march into spring

 I sit and watch those children

Jump in the tall grass

Leap the sprinkler

Walk in the ground

 Bicycle clothespin spokes

 The sound the smell of swingset hands

 I will try to sing a happy song

 I'll try and make a happy game to play

 Come play with me I whispered to my new found friend

 Tell me what it's like to go outside

 I've never been

 Tell me what it's like to just go outside

 I've never been

 And I never will

I'm not supposed to be like this

 I'm not supposed to be like this

 But it's okay

 Hey, those kids are looking at me

 I told my friend myself

 Those kids are looking at me

 They're laughing and they're running over here

 They're laughing and they're running over here

 What do I do?

 What can I do?

 What should I do?

 What do I say?

 What can I say?

I said I'm not supposed to be like this

 Let's try to find a happy game to play

Let's try to find a happy game to play

 I'm not supposed to be like this

 But it's okay, okay

Naked Baby Stories

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So when Derek was very young a couple times a month I would always have some sort of funny or dramatic story about him to tell at work and the story would almost always end with this statement...."oh and by the way he was naked" so I had a co-worker name them the naked baby stories....Here is one of my favorites.

When Derek was young he was always finding a way to get out of the house as a matter of fact I used to tell people he didn't talk because he was constantly planning his escape...Well one day I'm cleaning house and I'm in the front of the house and Derek was watching his movies in the back of the house....or so I thought....when a knock comes at the door, it was one of the neighbor kids and he tells me "I think your son is running down the street". So it takes a second for what he said to register then it hits me and I say "which way" and the kid points as I'm running down my driveway towards the the direction he points and I get down the the end of the street and there he is running his little butt towards the 7-11 close to our house....and yes he's completely naked.....so I gather him up take him home and notice as I walk back up my driveway that he had opened my bedroom window and used my headboard as a ladder to get out the window so he could make a run for it to 7-11....and his clothes were laying on my bed so I kinda wish he could tell me why it was important to take his clothes off before he went out the window but....I don't think I will ever get that answer,I was and still am happy he was safe and that the neighborhood kids were watching out.

Once upon a time.......

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I would like to tell you all a story.....and its a story that you don't see publicized in the world of Autism much and with the Divorce and Autism post that I read today I felt like writing.

In October of 1985 to 19 year old kids went on a blind date, it went well.....11 months later on Sept. 6th 1986 they got married. Went thourgh all of the normal newlywed stuff that everyone goes thru like having 2 of everythng and trying to figure out what side of the bed is theirs and the normal learning to live with each other stuff.  Fastforward 2 years and they are going to have their first child that too goes well and they welcome to the world a bouncing baby boy then 2 years after that another healthy baby boy. 5 years into the marriage they are celebrating the 3rd and 1st birthdays of their children and having a great time and unaware of the path life was going to take them down only a few months down the road.   It started with a simple question....When was the last time you heard him talk?  That question lead to hearing test....doctors visits....psychologist visits....psychiatrist visits....neruologist vists.....diagnosis. It was now between 6 and 7 years of the marriage there were times the couple couldn't be in the same room together, they didn't blame each other they just couldn't be together........sound like anyone you know?  read more »

TSA Update.

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My wife and I had a very productive meeting with the supervisor of the TSA here in Portland today, they were very accomidating and very understanding. We had specific questions about secondary screening and our proximity to Derek if it is needed and they assured us that we would never be separated from Derek and close enough to him that he can touch us for reassurance and that we could touch him and give him pressure if needed it would require us to go thru secondary screening after Derek was done but thats fine as long as we are close. We also have a medication that we travel with that needs to stay cold and we were told that as long as we can prove that an icepack is needed for medical reasons then they have no issues with having it in a carry on.  They did tell me that they do catagorize Autsm and other developmental disabilities under their Hidden Disabilities template, if a person does not have a visable disability then it falls under Hidden they just don't list them all on their website. Perz as for your question they could not tell me of any differences in the screenings in other countries or anything other than they will still check all electronics as usual but to allow for additional screenings ifthey see fit. We will have the same conversation in Las Vegas after we get there with their agents as well.