Mike Savage

So there's this guy in the US - he has or had a national syndicated radio show where he is known for controversy etc. So in 2008 he said:



"in 99% of cases (autism) it's a brat who hasn't been told to cut the act"



This quote enraged people who protested his offices in NY and demanded he be fired. You can search the story on Youtube and hear the clip.

At first when I saw this - I got angry. I wanted to haul him off into a back ally and teach him what the face (and fist) of autism really is.

I was thinking about this as I watched my son playing on the back swings. I thought about how Luc has nothing against anyone in the world, and he's already being bullied by a grown man. I realize that it's just because people don't understand.

Luc is very gentle. He doesn't interact with people. However he does like to please people and knows that interaction is far more important to us then it is to him. A good example of this is each day his bus driver says goodbye by holding out his fist to do the "fist thing". Luc doesn't know the fist thing - so he gently puts his hand over the bus drivers fist to acknowledge him, and gently pets his fist twice.

If Mr Savage came to my backyard, and pushed Luc on the swings, he would likely be impressed by Luc's sence of balance. As Luc Stims all the time, he hands are almost always in motion. So on the swing he holds on - lets go to stim for a quick second - holds on as the swing reaches it's high point - lets go to stim for a quick second - etc.

It's likely that Luc would smile at the person who is pushing the swing - and might even hold his hand as he walks around the backyard. When it's time for bed, Luc gives hugs, even to people he doesn't know well. I think Mike Savage could learn a lot if he spent some time with Luc. Mostly what he would learn is these kids aren't loser, freaks, actors or fruads. They are kids like you and I were, who need an extrodinary amount of help.

- ----------------------------------------------------------------------------------

In other autism news - a strange thing happened to me. One of the On-Air personalites I work with was promoting his show and said he was going to talk about autism at 6:30pm. I stopped him in the hall and asked him a few questions about his show and what he was going to cover at 6:30. He told me the answer to my question and pointed out that he knew that I had a son with autism.

I found this odd.

Although I work with this guy, we have only spoken once before. It made me wonder if this is how I'm known around the work space. If people whisper as I walk by "he's the guy with kid with autism, don't say retard around him -he's prone to violence". I was in no way offended that my co-worker knew about my family life - in fact I want to be known as a parent with a child with autism. I'm just a little suspicious on how that conversation went when he was told by someone.


OK THAT'S IT TODAY

Big Shout out to Kelly - my latest follower - old friend - and someone with a very interesting family life.

So far I believe people reading this blog go (in relation to Toronto)

Furthest North : Sudbury
Furthest West: Vancouver
Furthest East: Ireland
Furthest South: Toronto Island

feel free to email me if I got this wrong -

alexstephensmedia@hotmail.com

Autism Topics 1 - 4

Hello

I have so much to write about today, so instead of writing a lot on one topic, I'm going to write a little on several.

If your in a hurry just read #3 and maybe #1

Topic #1 Reaction To My Blog.

Despite the fact I only have a few followers, there are quite a number of people reading my blog. I know this because instead of leaving comments, they write me an email, or facebook me. To all of you I want give a big thanks. I write this blog for 2 reasons. Firstly, I want people to know the hurdles that all families face that have children with special needs like Luc. I want more attention on this disorder. A study found that 1 in 150 kids have some sort of Autism Spectrum Disorder. Another study out of the US found that 1 in 96 kids are on the spectrum and 1 in 67 boys. Usually when I tell people this, the immediate reaction from some is, "well, it must be diagnosed a lot more now". There is no foundation in a statement like this - Why? Because autism is not new. The way autism is diagnosed has not changed since 1980. Trust me, this disorder is on the rise, it's not something that is manufactured - like H1N1.

The second reason is I sometimes need to vent - self therapy - thank you for allowing this indulgence.

Topic #2 - Misinformed Co-Worker

Everyone who I work with knows that I have son with autism. When co-workers who are parents talk about their son scoring the winning goal in the weekend hockey tournament, I talk just as proudly when I tell them Luc said a new word or that he managed to get his own socks on. This disorder has taken so much from me, I won't let it deprive me of talking proudly of my son's achievements. So, knowing that I'm speak openly and freely about autism - a co-worker came up to me and said - "I just attended a lecture and it was brought to my attention that there is no cure to autism, I had no idea!"

I was shocked when my colleague said this. I thought everyone knew that. I had no idea that some people think that after a certain amount of time, Luc would be back to normal. All I have to do is take him to therapy and give him the magic pills. God - I wish my life were that easy.

I should mention that there are many kids that recover from autism, and this is what my wife and I work toward. But there is no cure.

Topic #3 - Autism As An Insult - How Retarded.

A few summers ago my wife and I went to a wedding. We were talking to a women who we just met, when she said "my husband is a little autistic". Having heard this, we couldn't wait to meet him. We wanted to see what he was like and how an autistic adult adjusts to the world. What advice would he have, what can he tell us. Well - when we did meet him, it became very obvious that he wasn't autistic, or anywhere near the ASD spectrum. His wife was using the term "autistic" to describe her husband's absentmindedness, and I suppose other qualities that she preferred he didn't have. My wife and I excused ourselves and went on to enjoy the wedding. My wife doesn't even remember the incident, but I gotta say - What the f--- who the f--- would choose the worst thing in the world and make it into a pet description of someone they love. What the f---. I hope this stupid women reads this and feels shame for talking to us like that.

OK I had to get that out.

Some people I know use the term "retarded". They say, "the phone system at work is retarded". I always tell people that use that term that I would prefer if they didn't use it around me. If you knew the parent of someone with down syndrome, you would never use that term as an insult again. I don't know any such person. But I feel their pain. I really do.

Last Topic

Thanks for sticking with me.

My wife is organizing a hockey tournament in October. The tournament is called "Stick'n It To Autism".

Anyone want to help? If so let me know.

Oh year- if you want to hear my radio interview go to:

http://www.sandysaysit.yolasite.com/

Hard Questions To Answer

There are two questions that I don't know how to answer.

The first is: Where is your son on the Autism Spectrum?:

I really don't know what people mean, or what I can say to give an accurate description of my son's condition. As I write this, I'm realizing that I can't even put to words how I could possibly answer the question. My son stims (flaps his hands), he can't really talk, he can be easily upset, he runs back and forth every chance he gets, he is always making some sort of noise. So maybe on the Spectrum he's a 8.2?

I understand why people ask. They ask because they are concerned and want to know more. They want to know how hard is life on my wife. They want to know if they can place my son in a category along with other Autistic kids they've been exposed too.

What if I said:

My son is beginning to talk, he seems to understand his situation more, he is showing normal behaviour is certain situations, like not taking off is his seat belt at a stop sign, my son can match 80 words to their picture, he can successfully navigate the Internet, he has accidents, but goes to the bathroom by himself. So maybe he's a 5.1.

The second question that I don't know how to answer is: How is your son doing?

The reason why this question is difficult to answer is again the image I think I might create in the mind of the person asking.

If I say "he's fine", I worry that I'm not giving the whole story.

I remember one time a former boss asked me about Luc and I said "he's doing well, responding to therapy" etc. To which he retorted "Oh good, so he's getting better then, good". I guess he's right, Luc is getting better, he seems to be learning and understanding. My issue is, I don't think that this type of interaction really paints the picture of autism. Luc can put his socks on by himself. This is a skill that is fairly new, and I like that he can do it. I got the impression that my former boss thought that Luc was dressing himself and walking home at lunch to watch the Flintstones, and the nightmare was over.

Again - I like talking about Luc -I like people asking me about him, I like that people are interested about the mystery of Autism to listen to how I answer. The problem is, I just don't know how to answer.

The Allure Of Water To Those With Autism

You know what scares the hell out of me? Water. My son loves the water. He is never more happy when he is in my fiends' Tom back yard pool, where he can touch the ground and bob up and down. I visited my friend Tom twice last summer and we were both amazed at how long Luc wanted to stay in the water. He couldn't swim, or dogie paddle, but he could walk / use his hands to move around the shallow end, and enjoy the pool and the feeling of buoyancy.

Kids with autism love water. The are drawn to it.
Kids with autism have no fear. They will jump in a fountain, lake, river, deep end not even understanding that this is a dangerous thing to do.

I read about one boy with autism who had a special dog that he was tied to. This boy whenever he saw water, would bolt to it. On a class trip downtown he ended up in a fountain before his teachers could corral him. The boy is a teenager with autism and still had not learned appropriate behavior. The teacher is lucky it was just a fountain.

So now he has this dog who knows to put on the breaks when the teenager starts to bolt.

I'm writing about this because a family member wants to spend some great quality time at a cottage next summer. Right away my mind goes to a family vacation we took 2 summers ago and every moment Luc was heading for the river. I would lean over to hammer in a tent peg, then look up to see Luc 20 meters away and going for the river. I came close to tieing a rope to him. I know - this sound horrible, and I never thought I'd be that kind of father, but I was at my wits end with trying to keep control of him. I didn't tie him up, but I'll tell you this, if I ever hear of another parent putting a leash on their child with autism, what would have been distain, is now understanding.

To heighten my fears, or educate me, depending how you look at it, Autism Canada sent out a story about 2 kids with autism drowning in Florida, separate incidents.

I guess the reason I write this blog is so that the reader can understand that autism is always there. You can't take a vacation from it - you can't just go to the cottage.

I thought today I would write about some of the challenges that I have been facing lately. I only do this because I want people to understand some of the surface issues that parents of children with Autism face. I won't get into issues of heartache and pain - it's too hard.

The F---ing bus. My son Luc gets picked up every day at 7:30am to go to his treatment centre. At first I felt really fortunate that the school he goes to (a regular Catholic School) would arrange busing to his treatment centre. But, after some contemplation, I thought that fair is fair. Lots of kids get bussed all over this city, why should Luc be any different. The problem is this:

Luc gets picked up at 7:30 but can't arrive at school until 8:45. So multiple kids get on and off the bus while Luc sits there for an hour and a quarter. He can't talk to so he can't talk to the other kids. Something he wouldn't likely do anyway because of his condition. I asked his school principle to look into the situation, and they revised the bus schedule. So now he's getting picked up at 7:50. So in an ideal world he would be on from 7:50 to 8:45. 55 minutes to do a 20 minute drive I think is fair enough. Only thing is - he is now getting to treatment at 9:01. So the trip is still as long, and he is late every day. I can't begin to tell you how valuable the time in therapy is, so to lose 1 1/4 hour a week is really a bad thing. I'll try the school again, but I doubt anything will happen. I asked the bus driver if she knows of any kid that is 0n the bus for more then an hour and she said she did - Luc. I'll likely have to drive him everyday and then show up late for work everyday. This is just one small challenge that we face.

The F----ing B12 shot.

OK I admit it - I'm a coward. I just can't bring myself to learn how to give Luc a shot in the ass twice a week. Luc's blood is full of chemicals. Part of the detox process is giving him a B12 shot - so twice a week my wife puts cream on a little spot under a band-aid to num him up and 45 minutes later, she sticks him with a needle.

At first we did it while he was sleeping. I was describing the process to my friend Mark Brown who had this to say:

So let me get this straight - you go into his room in the middle of the night with flashlights and you pull down his paints and give him an injection!! Could you make it any more scary for the little guy? Why don't you wear ski masks while your at it!

Anyway - I can honestly say I take part in every aspect of his therapy except for the dam shot. I don't know why I can't get over this block. I digress.

The shots are expensive and not covered by OHIP or my drug plan. I spend about $600 a month on pills, oils, speech therapy, shots and powders. Not that there is any cost I wouldn't pay - it just wears you down sometime.

Enough venting. I like to think about what my son can do, not what he can't. He has been way more verbal lately and he seems to be understanding better. He is going to the toilet on his own, and is a constant source of happiness for me.

Hey Everyone - Big News - The PSA is finished and posted here

http://sandysaysit.yolasite.com/

It was tougher to get done then I thought. People don't seem to work as fast when you're not paying them. Hmmmmmmmm.

Anyway the experience has been great - everyone I asked for help said yes right away and I think Team Luc did a great job. What I really like was the attitude by people that know how difficult things have been. Most people that support us, can't really help us. There was awhile there that even those that wanted to help, say, babysit for a night so Lucie and I could take a break. The thought was always nice, but for the longest time Luc was still in diapers. And we felt we couldn't really ask a friend to change the diaper of a 5 year old.

As a side note: Luc is now toilet trained - so if you wanna babysit give me a shout!!

Getting back to the PSA - the process also included several members of the board for Autism Canada. They had difficulty understanding how radio scripts are written. Some felt that I've painted a picture of complete despair. On a positive note -I did get this feed back from one of them:

I am sure you are over the top busy right now, so I will write out my thoughts about the PSA when I first heard it.

it serves to bring public awareness to the number of children affected -- very high.

tells a story that is very common in autism -- a story that matches my own

it serves as an awareness tool to shed light on behaviors that might otherwise be dismissed resulting in later diagnosis.

It is difficult to attach a diagnosis/problem, for an unaware mother/family, to what seems an innocent play pattern -- no one wants to see a down side to a normal cute two year old.

So , the above is what I heard in the message -- which one doesn't matter to me -- if that is the objective then I think you have achieved it -- however, if it is Autism Canada's mission to always give hope, I don't see it; however, I don't think that is what you set out to do in this PSA. I think Autism Canada might want to address the hope side in a second PSA -- I am not sure one could do it justice rolled into one???

_____________________________________________________________________

I liked the above because it speaks highly of the things I did cover, and brings up valid points of things that have been left out.

My next move is to get this on air in several markets. Anyone that has 2 hours that can call radio stations and get contact info would be a great help.

Thanks for reading my Blog - feel free to comment - if this site will allow it.

Hey Everyone,

Thanks for checking out my blog - and guess what - my followers have doubled - Thanks Nat.

So after a conference call with the execs at Autism Canada here is the final PSA radio spot that has gone into production.

I could use a little help. Someone a little media savvy would be great. I have my eye on a few of you, but it would be cooling if you volunteered.

Anyhoo - read the spot and please comment to

alexstephensmedia@hotmail.com

thanks

_______________________________________________________________
Autism Canada Foundation
PSA

(This spot should be voiced by a women - the mother. The voice should move from complete happiness to total devastation – the diagnosis and on-set of Autism can be quick and devastating.)
_______________________________________________________________
10 fingers and 10 toes… the perfect baby.
And his name is Adam.
His first year filled with the growth and discoveries that every healthy baby should know.
His second year, Adam became isolated and disengaged. He seemed completely disconnected from us
He became obsessed with spinning the wheels on his cars and lining up toys.
(announcer)
This can be the tragic onset of autism
Autism is a neurobiological disorder that is now being diagnosed in conservatively 1 in 150 children in Canada .
Find out more at autismcanada.org

_________________________________________________________________

I sent to the TEAM LUC producer. He was more then happy to help out once he heard my story and how important the cause is.