Death: The Difficult Script

How do you talk with someone with autism when someone close to you is dying?

People with autism typically deal better with routines, facts, and literal communication.

Getting up close with death, grief, and end of life on a daily basis tends to blow that all out of the water. Especially when the main care giver is impacted, like myself.

James picks up on emotions. He wants everyone to be happy. I think because he understand that and the other emotions are more complicated and bewildering.

We have already covered the basics of dying, as in it is a natural thing that tends to happen when people get old -- their bodies start to give out and shut down. They get slower, move less, sleep more, and can have bad periods and better periods. Once they die, they do not breathe. They do not open their eyes. They do not talk. They are not alive.

This is really hard to stay calm and discuss. But I need to. The tears and distress I show tend to bring out behaviours. Sometimes I cannot help being overwhelmed, but I stay as calm as I can and talk through it, letting James know this too is natural and part of life. Maybe if he sees me with these messier emotions and still being able to be me and keep on going, it will help him to do that too.

In the days to come, I will need to talk more with James, about what will be happening next, as well as what he will need to do. I will have to come up with some conversational scenarios. How do you script death? And keep it literal but not too socially unexpected?

Guess I will find out.

Autism Resources and Community

Social Stories, Electronic Style

One of the most helpful tools I've found to help deal with James' anxiety and to prepare him for new things is the use of Social Stories. Sometimes I can get lucky and find them online. Sometimes I have to make up my own.

There are sites like these out there - just search the web!

At first, I thought I'd write them down nicely, find some illustrations, and staple them together in a book, so we could keep using them. Yeah, well, I know. We all learn by doing, right?

Most of the I do with James Social Stories are verbal, with a few visual aides to help anchor the message. Some children's books out there make great Social Stories. Curious George is great for us, because the messages in those stories are great for James, and he loves to memorize them. I am a big fan of such  TV episodes as "Doctor Monkey" (because for a while, James was anxious about going to the doctor's office), and "Curious George On TIme" (which helped us learn about time, paralleling his class work).

I've also found that videos can be a great planning tool and animated Social Story device for James. I was reminded of that this morning, when he wanted to watch Disneyland rides using YouTube. I started using the videos to prep him for going on new rides he might not have wanted to try without first "riding" them in the safety of his own home.

It's not foolproof, but the success rate for James trying a new ride is much higher if he can preview them. I think the best example of that was Radiator Springs Racers. I knew that the fast speed, ups and downs, and lack of control during the ride would be hard for him to deal with. The fact that we were in a car-like vehicle, coupled with his repeated advanced viewing of the ride meant that the new ride quickly became a new favourite ride.

What other kinds of Social Stories have you found to be successful?

Weekend Project: Social Stories

As part of James' preschool program, parents are invited to monthly presentations by teachers and clinicians, to better support the children and their families. I am here to tell you that it's a great resource. Even after almost 3 years and repetitions, I still get something valuable from the sessions.

This month was no different. This morning we heard about Social Stories, and I was struck anew by how helpful they can be. I have started a Birthday story, because James is turning 5 this weekend, and this will be fun for him to understand that he has a special day coming up.

Five years ... yikes!

Decking Those Halls

We are starting to swing big time into the winter holidays. This year is so much fun because James is present and full of fun and wonder. It hasn't been like this before.

Last year he was just starting to make developmental and speech progress. He loved to toss wrapping paper and tissue up in the air and *laugh*! The year before ... well, I cried. It was like James was on Mars and the holidays did not exist.

This year we went to partake in holiday mayhem at our gym. Two floors devoted to ornament making, handmade signs & reindeer goggles. The rock climbing wall was in full swing. The kids were jumping in the games and exercise rooms. James' favourite thing? Making spinning art. Some genius had taken an old record turntable and poked paper plates on it. The plates would spin around and felt tip markers could be placed on the plate and make spinning art. Very cool for James, lover of all things Spin!

Bonus, Santa came to visit!!! The kids were good waiting in line, munching on popcorn and downing apple juice outside, then running the length of the room (and checking themselves out in the floor-to-ceiling mirrors on one wall) once inside the room to meet Santa.



Amazingly, the kids were not shy or weepy when it came their turn to meet the Big Guy. In fact, we gave him a good laugh:


I like to think trying to talk to James about Santa in a social story format helped him prep for their meeting. Social Stories are on my brain right now. I attended an awesome presentation on them just yesterday.

James did not seem too phased by all the noise and confusion. He enjoyed his special peppermint stick from Santa. Several of the employees knew him well from childcare and called out "Hey, James! Good to see you!" What a nice start to the holidays!