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???

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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.