Stickn It To Autism Hockey Tournement

Hi Everyone,

Lucie has decided to host a hockey tournament to support Autism Canada. It takes place on October 23rd. All the details are at:

www.sitahockey.yolasite.com

If you check out the site you can see our little hockey guy who I affectionately call "Winky".
If you want to play on my team, send me an email:

alexstephensmedia@hotmail.com


So, todays topic is How Luc Acts With Technology.

Since birth Luc's interest in things have changed. It was only 2 years ago when I asked my wife "what should we do for Luc's birthday, what does he like the most" Her answer was easy. "anything to do with sand or water". Luc used to love his turtle pool, and equally loved his sandbox. Now, he has no interest in the sandbox, and spends little to no time in the kiddy pool. He does love going to backyard pools and takes swim lessons once a week. He, like any other kid, has changed. This is good. It shows that he is developing, thinking, changing his interest in things. That being said, there is one thing that hasn't changed and likely never will.

Luc loves the computer. He goes to a variety of sites. Mostly pbs.org and Youtube. Putting Luc on the computer is easy for me. When I do, I don't have to entertain him, look after him, or even deal with him. It is the thing to do when I feel lazy. When I don't feel like taking him to the park or giving him 100% of my attention. It also makes me feel like a bad father.

PBS.org has a varity of games, many on the Word World tab that teaches the names of letters, and how to spell easy words. I'm sure that partly because fo this site, Luc is able to read about 80 words. Luc can read more words then he can say.

The issue is this, and this is where autism rears it's head. Luc, of late for some reason cranks the volume on everything. My computer is outfitted with a high quality speaker system and sub-woofer. Luc will crank that thing to 11 and make the house shake. When I yell down to turn it down, I always hear Luc whine back (autism for "I like it loud dad, I can't enjoy this unless it's loud my brain needs it loud - why can't you understand"). He will turn the volume down for a minute, then crank it back up.

I find this behaviour really disturbing. I should point out that many things Luc does on the computer is disturbing. He'll watch the same thing over and over again. Sometimes he watches the same 5 seconds 50 times. Usually a logo will catch his interest. The opening every MGM movie starts the same way, and Luc plays that intro again and again.

I don't know what to do. There was a point Lucie and I totally banned the computer. Luc increased his TV watching and played in the back yard a little more. As time passed, we became less strict, and let him back on-line.

Luc works hard all week, one on one with a ABA teacher. Doesn't he deserve to do what he loves on the weekend?

I don't know what to do. The problem is Luc has no imaginative play. He doesn't play with cars, action figures, balls or toys. I try and get him interested, but he even the hotwheels don't hold his attention very long. Luc doesn't really have any friends. So play dates don't happen. When people that we know that have normally developing children come over, Luc doesn't pay any attention to them, despite attempts from them to break through to him.

So the long weekend is coming and it is going to rain all weekend. My daughter will put on a tea party, and Luc will want to watch the game show network, or play on the computer. I have solved the volume problem by going deep into Windows amd setting the volume on Explorer to the first level. So when he puts the speakers to 11, the sound will be reasonable. I just wish there was something that was good for him to do that would be more social or lend to his creativtiy.

Any ideas?

Podcasting Articles On Autism

Hello Everyone And Thanks For Reading

So today I will write about something a little different:

Once again I was at my friend's Tom's place on the weekend. Tom has a backyard pool and a little white dog. Both Luc (my son with Autism) and daughter (normally developing) really enjoy visiting his place. The pool has a fair size shallow end where Luc can reach the bottom and move about, exploring the jets, stairs, lights etc.

I don't get much of a chance to see Tom, so we talked about the various issues of life: family, travel, current events etc. It never takes too long for the conversation to drift around to autism. The reason is, Luc's condition dictates so many parts of our life. Everything from going on vacation (which we never do) to what kind of soil to buy for the garden, somehow all relates back to autism.

Tom was telling me that he read an article in the newspaper, thought of me, and decided he might clip the article. As it turns out, he forgot too, however suggested that if I go to the GlobeandMail.com, I could likely find the article he thought I would find interesting.

There are so many articles and websites about autism that I find it virtually impossible to read everything and sometimes anything. Often people will send me articles that are written for those not in the autistic community. These articles attempt to explain what autism is, how it affects families and what can be done. I don't really know why people send me such an article, but it never really bothers me. I'm sure lots of people send Tiger Woods articles on how to improve your swing, or Micheal Jordan the basketball rule book. (note:look who I compare myself too - a famous womanizer and a notorious gambler).

So - you may ask - how does one stay on top of important articles written about autism? Who weeds out info that likely those in the community already know about? Well, to find out I did what every middle age man would do - I asked my iphone. And the iphone said - go to itunes and download "Rob Sidell Weekly Autism Global News In Review". It can be found on the Autism One podcast section of Itunes.

So, this guy, Rob Sidell, reads articles that he finds relevant, interesting, educational and reads them for his podcast. For those of you less tech savvy - a podcast is a radio show. I'm sure technots are freaking out that I call a podcast a radio show, but that's what it is - a radio show that I can tape and listen when I want to on my ipod / iphone. Unless your involved with autism I don't really recommend you download this content, however, you should try and punch in your interests into the search portion of Itunes. You'd be amazed what will pop up and what you might learn.

So Rob Sidell has a boy that has recovered from autism. This alone is motivating. He starts the show by detailing what he is going to read. He then often reads the article without bias - and adds comments in between articles. When he gets annoyed or passionate he adds his comments to the material he is presenting. Good podcast. Perfect for me as I listen on my drive to work.

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.