Sunday morning musings

Julia is playing with her lego in the sun room. She often does what she is doing now – playing with something that seems to have been put aside for awhile. She hasn't touched legos in weeks. Right now, she is really building – walls for spider man (who she doesn't like), a house and a car. Lately, she had been putting toys out on various surfaces, filling tables rugs and portions of floor with figures, plastic fauna, dressed trolls, and clay embellishments and refusing to put any of it away because “I playing with everything!” The other night she had so much stuff on the coffee table that she had to put her painted lizards on the couch to play with them.

I have tried cleaning up with her and right now it is not working with these toy gathering. She really is involved with the total gathering on each surface. So, instead of fighting my little city hall, I sort and put away toys when she is not home. Cowards way out? Maybe. We still find plenty of stuff to clean up either together or Julia alone. Books, for example, are the task today as they are splayed all over her bedroom floor. I also have her put away her laundry once it is folded and hang up all her dresses. I rationalize that this makes up for my not having her clean up her toys every day.

Parenting is such a crap shoot. Who knows if you are doing it right?

I have been thinking and reading about autism. I know so little and to dive into the literature is overwhelming. I can't understand the real scientific writing; the writing about very young kids and the therapy that works for them is not relevant to Julia; so much of the how-to teaching stuff does not apply to a child who has only recently acquired the language; and although there are a good number of blogs out there written by people with autism and their parents, I have found very few that I am willing to follow. This last is a very, very indirect way to gather information.

Of course, what I want is the path and the prognosis, and it is shocking how little of that is out there. I have not found the scientic literature that says what happens when kids with autism grow out and I have taken to reading the anecdotes. This via two books -- A Mind Apart: Understanding Children with Autism and Asperger Syndrome by Peter Szatmari and Send in the Idiots: Stories from the from the Other Side of Autism by Kamran Nazeer, both of which gave me much to think about. Nazeer writing about his discovery of the uses and meanings of conversation is coming full circle for me. As a stutterer, I, too, struggled with conversation; as a shy young person, or rather, as a young person without experience in playing and talking with other children and adults outside of my family, I did not at all understand conversation in much the same way that Nazeer did not understand. And here, to read that someone thought so deeply about it and systemically used what he had learned to start talking – how I admire this author. And I admit, I did feel a bit stupid. I could have done the same think from my own point of view.

David sent me the link to this article -- http://www.wired.com/medtech/health/magazine/16-03/ff_autism/ Again, mind opening. The idea that autism is not what is wrong with the brain, but what is different. Maybe there is no possible cure, maybe what is needed is accommodation, not cure. Trying to justify this idea to David yesterday, I came up with the metaphor of a color blind person – no one tries to cure him. Rather, he is taught to live in a colored world – accommodation, not cure. It is not just me that thinks that Julia is bright. Her teacher and therapists say the same. But she still needs to read and write and count and probably look people in the eye when she talks to them and answer questions the way they are intended to be answered. How do I teach her to do these things and still perserve her unique way of thinking and creating, still not squelch her belief in her inate talents and worth? I am not looking to have her live in some alternative society that says that difference or disability is to be so cerebrated that it is almost desired and is not to be departed from, but to have her live as part of the world but on her own terms. Oh, just thinking about this aim is enough to hurt my heart. This is hard row to hoe as Hoosiers say. Been there, done that, and have the scars to show for it.

I woke up with the thought that I want to find an autistic adult who will tell me more, what worked for him (maybe her, if I can find a woman – autism is much more common among males than females), what he thought about as a kid, how he grew up, what didn't work, and willing to let me bounce ideas off him about Julia. I know, I know, everyone has autism is a different way, but I am not autistic and I would really like some personally informed feedback. Of course, this makes me think that I should be mentoring some stuttering child's family.

Back to Julia – She has on a full pair of pjs this morning – shirt and pants! She has been wearing her “cozy clothes” on cold mornings – a very soft sweat suit. She wore her cozy clothes coming home from Florida and for that entire day, including going to OT. I am letting her stay in her pjs all morning – how tricky can a mama get? I want to edge her into shorts this summer and maybe pants next fall. Just to expand the repertoire, make choices a little easier to her and me.
Julia has been “hiding” in her shirts this week. This is a behavior that she gets into now and then – when she doesn't want to do things like clean up in school or do math of when she is tired, tense or scared. Right now, it is constant, when she is playing, riding in the car, walking, shopping, getting dressed. The only time she doesn't do it is when she is in the swimming pool, but then, pulling her bathing suit up to cover her mouth and nose is probably almost impossible. And this make me smile. She may have idiosyncratic behaviors but she is not crazy or stupid!

Oh, my girl.

On the Cheshire front – Cheshire was accepted into the NYC teaching fellows, a very competitive 2-3 year program that take colleges graduate and career changers and puts them into the classroom in troubled schools. She would probably be teaching Spanish. This is not exactly what she wants to do and it makes spending time with Jason in England difficult, still it is an exciting opportunity for her to consider. She is a marvel, and we are so proud of her.