Speech

These days things all seem to be coming together. My son is now speaking and expressing himself. He still has a lot of behavioral issues and we are still pouring money into his therapy but we actually see gains!

He points in the direction he wants to go and says "that way!" When something disapears he says "All gone!" When someone says hello to him he responds (sometimes) with "Hello..."

He may not be able to have a conversation yet but it makes us over the moon happy that he is now very interested in language. My wife and I constantly talk to him and never give up with the conversation. One technique I have found that seems to work for him is to make each day a theme day and focus on just one or two words that day. He may or many not say the word but at least he gets to hear it at least a hundred times in different situations. I often find he will then say the word a few days later.

Of course we also have a great team of therapists a new consultant who is night and day different from our last one (read previous post for that horror story) and awesome OT and SLP.

It takes a lot of time and energy to play with kids and talk to them with interest for a few hours but this seems to work. Get into their play and treat them as the most interesting person for those few hours each day. Turn off the computer and the cell phone and pull out the playdou!

Communication of any type is so vital. If your doing PECS, sign language or a few words it all helps bridge the gap. For me that is key.

Name tags

I have never been a fan of name tags. To me a name tag is a redundant aid that makes people walk up to you and point at the name tag and say, "Hello J-O-E?" (using the name Joe for example). Without a name tag we would be forced to say, "Hello, my name is Fred. Pleasure to meet you." Seems a little more real.

Name tags were the theme at the parent ASD meeting last night. I was unpleasantly surprised to see the state of our ASD community. What a mess!

Out of 30 parents I noted the following:

- Most were doing some strange form of therapy without any scientific backing. These parents seemed to be confusing "popular" with "effective." If 90 out of 100 people do a specific therapy it only means 90 like it. Until a single scientific study is done proving effectiveness it is simply the "flavor of the day!"

- Most parents had no sense of urgency. One parent had waited a year before getting a consultant. Even at this meeting she was clueless about how to proceed. While I have patience for stupid and lazy people, I don't have patience for stupid and/or lazy parents. When your child is 6 you not only loose most of the funding but also the child may go to regular school so you have a lack of both time and money. This combined with the optimal time to teach a child (2 to 6) is all a good reason to move your ass when it comes to providing therapy for your child.

- Many of the parents seemed to have given up. They were talking about choices such as if they should redo their kitchen or spend more on their child. Hello? Not going to Mexico this year? WTF? This blew me away. Not being rich myself I knew that once our child was diagnosed I would likely never go on another vacation again. In all likelihood I would end up selling my own home to fund the therapy. Are these parents sick? On crack? I am not sure why this surprises me actually. I've heard crazy stories about parents who have team meetings with pizza and beer too. I guess here are all sorts.

Anyways it was nice for my son to play with the other children for the couple hours we were there.

Medicare for Autism NOW Rally in Burnaby

Went to the Medicare for Autism NOW Rally in Burnaby this weekend. Have to give a big thanks to the FEAT BC people for their great work. Hundreds of people turned out and there were several news reporters.

It was interesting as one reporter spoke to me and I distinctly remember her asking me this question: "...but isn't it all really well organized? I mean there are so many people with Autism now you would think it would be..."

At this point I had to wonder where the question was going. Was this a rhetorical question? Was this a leading question or was she really serious?

Parents know all too well about all the problems (too many to list) but the rest of the world seems like they are in denial.

I plan to make a presentation for these people showing the percentage chance that their next kids will be diagnosed with ASD and then asking what they would do? The changes of this are getting higher and higher. Heck if no one else on your street has a child with ASD then your the exception. 1/100 is good odds. You are more likely to have a child with ASD rather than get in a car accident this year.

Now imagine what you would do? Search the Internet. Call the government. Think about it. Confused? Now take that confusion and mix in despair, outrage and disgust.

Welcome to the world of Living on the Spectrum.