Meet Thoth :)

For the past few weeks Brendan's class at school has been studying ancient Egypt. They've been working in groups to make model pyramids, learning about what is believed to be the everyday life of ancient Egyptians, & also were asked to choose a god or goddess to do a research project on (he chose Thoth, the god of wisdom, scribes, & magic). Brendan has enjoyed this unit & was able to bring some resources from home for his research- one of my cousins married a man from Egypt & has sent Brendan books on Egypt & also pictures of her family in front of the pyramids- pretty cool! A couple of weekends ago Brendan found himself challenged by the homework, though... well, the fact that they had homework over the weekend (not a usual phenomenon :) was the first challenge to wrap his head around. He has very specific ideas of when & where homework should occur, & we are generally supportive of these ideas, since he needs his down-time at home very much. This is the first year since homework became part of life (in 3rd grade) that he (now in 6th grade) has been able to cope with consistently doing homework- big sigh of relief! So Brendan met the weekend homework assignment with mixed feelings, particularly since it was a craft project...

Brendan is one of the many on the spectrum who really dislikes getting his hands messy or gooey. His fine-motor co-ordination has come along very nicely & although he doesn't much like cutting with scissors or glueing things together, he will do it if someone sticks by him. I was really proud & amazed when he went along with the mask-making project at school- using plaster of paris strips on a form to make a mask of his chosen Egyptian god. He had drawn & cut out facial features, & then worked with a couple of his teachers to do the messy parts. I was there when they did it & watched him do it! He was just about maxxed-out by the gooiness of the plaster by the time he finished, & ran straight for the sink to rinse his hands afterward, but he did it :) The painting of the dry mask went better & he happily told me about the cool colours he choose for it after school one day. Again, hooray!

The weekend project was to make a statue, at least 12 inches high, of their chosen god. Brendan's first reaction was to opt out. It was an option, since his teachers are very reasonable about not pushing him too hard when it comes to homework (or allowing him to do it at school, rather than at home). Charlie told Brendan that he thought it could be fun & why don't they try doing it together? Brendan cautiously agreed... And so began an interesting weekend for all of us :)

They discussed options & decided to do a mixed-media project. They found a mailing tube that was already more than 12" tall, & then Charlie discovered that an old medicine bottle fit perfectly into the top... which led them to decided to make "Thoth as Pez dispenser :) They decided to make the head from sculpey, so I gave them total access to my sculpey stash, plus made them look at the Klutz sculpey book before going ahead. This helped them decide to make a tin foil armature first, since it would make the head lighter. They used a straightened-out paper clip for the beak (Thoth has the head of an ibis).

Charlie cut a circle out of waxed paper the same size as the top of the bottle to use as a template, so it would be the right size. They worked for over an hour on the sculpture, & then drilled holes in the lid & bottle (to wire the top in so it could be flipped off like a Pez dispenser) while it baked. I really enjoyed watching them work on it together, heads bent over various bits & pieces, discussion of how to fit things together, how best to smooth the sculpey, what colour to make the eyes :) By the end of day 1, the head was made & epoxyed to the lid & Brendan had discovered that he likes the feeling of working with sculpey. Hooray!

On day 2 it was my turn to get involved, since we needed to dress Thoth in the latest ancient Egyptian style. I brought down odds & ends of fabric & Brendan & I looked a pictures to decide how he wanted it to look. I draped & he critiqued, & finally we finished it off with a ribbon belt & a torque made from a string of glass beads Brendan had made. He was really pleased. So were we... on many levels. First, he hadn't opted out of a challenging assignment. Then... he had fun doing it! So did we :) And, mostly, I am always looking for ways to share the wonderful feeling I feel when I make stuff, with Brendan. This is not something that comes as naturally to him as it does to me, but the feeling of accomplishment is something that just makes me want to keep doing it, making things, experimenting with ideas & techniques & media. It was so lovely to see him enjoying himself so much while doing this. And... it was a great hit at school (especially the Pez... :). As I think of the summer ahead, I think we'll be doing more with sculpey- maybe this year he'll make beads to use for his holiday gifts!

"Too open" about it...

I wonder how many of us have heard this, from well-meaning people... I heard it yesterday & I'm still trying to process my feelings.

I was talking to a friend about a recently-met other person, and my feeling that this person seemed to have difficulty, at times, finding things to say to me. My friend's response was that perhaps I'm too open about having an autistic child- implying that it puts people off. That this is what would make it hard for someone to find things to say to me.

I have gone round & round in my head- & out loud to Charlie- for a long time, about how to speak of autism & how it affects me & my family. I certainly don't want to be obnoxious, single-mindedly harping on the topic night & day- that just turns people off. I do my best to speak positively & respectfully about my son & my whole family, to retain our human dignity. Having been disabled in the past, I know that people prefer not to hear about difficult things. They are uncomfortable, they don't want to to have uncomfortable things brought to their attention. It's so much easier if we just stay invisible... I have tried being invisible- which is easier on some levels, but feels very much like pretending, like faking. I have tried saying as little as possible- waiting, say, until Brendan does something obviously "different" in public, & then being open to answering questions (as if anyone's brave enough to ask...). These approaches meet the needs of our society, to some extent, but they certainly don't meet the needs of my kid or my family! It just feeds the dominant paradigm of ignorance & cruelty by acting as if there's nothing different about my child or my family. It doesn't prepare society to meet us or accept us.

So, I talk openly about my autistic son & about being an autism family. I'm as proud of him & his accomplishments as any mom, & I don't see any of it as being "in spite of" his autism- sometimes, what makes me proud of him is a result of his autism, a result of who he uniquely is. Our family is different than many, too, & I think it's important to let others know about our journey. If I don't talk about us, how will anyone know that they know a family that lives with autism? How will they know that it's not just something that happens to other people? How will they learn our truth about autism- that it's possible to live with it & love someone with it & be proud of that person- & understand that there isn't just one way to think or feel about autism? How can we change the world if we hide?

I believe that we are doing nothing less than changing the world, by being who we are, loving each other for who we are, & telling the world about it. I know that I risk seeming like a "Johnny one-note" when it comes to autism, but it feels terribly important to me to prepare the way for the rest of Brendan's life by talking about difficult things now. As an autism parent, I feel like I'm on the front lines of a desperately important issue- how society is going to make room for my son as he grows up.

So, in the face of feedback that perhaps I'm too open about having a child with autism, the whole of my being says, NO WAY! This is as much a part of me as my need to create- to knit & weave & dye beautiful colours. (I wonder if I'd ever be told I'm too open about these things...) My child & my family are at the centre, the heart of my life. I speak often & lovingly of them. To a select few I also speak of the more difficult things, because I need support, as any parent does. As Charlie has pointed out, we had friends evapourate in the aftermath of Brendan's diagnosis, people who couldn't wrap their heads & hearts around us as an autism family. But we have many more friends who have stuck with us, & who are living proof that our openness about how autism affects our lives does not have to be a turn-off.

I'm wondering how other families deal with this sort of feedback when they hear it. What do you say? How do you feel? Let me know, please! It would be a help & a comfort to know how you're facing this, too. Thanks, friends!!