Josiah will do just about anything for a shiny string of Mardi Gras beads. Dangle a strand just out of reach and that boy snaps to attention. It’s best to keep a nice stash of them on hand, which is why I frequent the Dollar Store to load up. It’s why I try to keep some in my purse and in the van and in Rick’s car. It’s also why the aides on Josiah’s morning and afternoon buses each keep a string of beads.
I’m telling you, life is just much easier with beads in tow.
We are packing up today. In the wee hours of the morning we will be heading out for a family vacation. This will be the first one we have taken with all 7 of us together, in a very long time. Josiah was in a residential treatment facility last summer. He did not go with us when we drove up to Ohio and Pennsylvania to visit family and friends.
This year we are driving a much shorter distance. We are heading to Florida. It should only take us about 9.5 hours to get there. It’s best to do as much of the driving as possible while the kids are all sleeping. 7 of us with all of our necessary belongings in a 7 passenger van makes for a rather tight squeeze. There is not much leg room for stretching. If we travel during daylight hours there is more opportunity for sibbling squabbles. We learned many years ago traveling at night works best for our family.
I absolutely love to create schedules and routines. I love to plan everything in advance, on paper. It’s in following the routine or schedule where my system breaks down. I don’t always like to complete the necessary tasks once they are scheduled on paper.
However, that has not deterred me from creating routines for the summer. This morning I gave Jesse and Chandler each an open ended routine template for them to complete. It’s meant to be filled in each evening so the next day will be planned before it even arrives. The older girls have work and busy social schedules. Their time is already well mapped out. But the younger kids need some type of structure to their days.
My last blog post was about Josiah not being able to communicate with us. It was about him needing a voice, some type of equipment to help him express his wants and needs. Josiah has a Voice Output Device right now. He’s had it for 4 years. It’s big and bulky. It’s heavy and very expensive. The school district provided it for him, free of charge. It goes with him in his backpack to school every morning. It comes home with him in his backpack every afternoon.
Ideally, Josiah would use it to let us know what he wants. He doesn’t though. He knows how to use it a little. He knows how to tell us what he wants to eat. He uses it at school during calendar time as well. The problem is we have not let Josiah use it all the time. He broke it once. Shortly after he got it, Josiah hurled it across the room. The screen shattered. We were mortified. It is a $7,000 piece of equipment.
I happened to turn on the T.V. the other day when a show about Autism was in progress. It was on a channel I never watch. I was about to switch to the show I wanted to watch when I realized it was a documentary about 3 teenage boys with Autism. I was intrigued. Each of the boys had different issues and challenges. The one that fascinated me the most was the story of Jeremy. Jeremy was 16 and non verbal. He attended a regular high school but didn’t have friends because he was unable to communicate with them.
As the story unfolded, Jeremy learned to communicate by pointing to letters on a card to spell out his message. I was fascinated to see Jeremy spell very quickly, without even looking at the paper. An aide held the alphabet card out to his side while Jeremy looking straight ahead, typed each sentence. It was amazing.