Saturday, January 01, 2011

Goodbye to MMX!

It's goodbye to the year MMX!

Though it was far from fabulous, even 2010 had its highlights: amazing speech therapy focused on language-pragmatics that's gone a long way toward helping the sweet girl with her social interactions, another sleep-over camping adventure with her classmates (this time without us in tow as we had to be in 2009: whoa-hoo!), fun get-togethers with another Pokémon fan, and the amazing big one-three-birthday for the girl, which did leave us asking that most clichéd of questions, the one about where did the time go.

Those are some of the good things that have made it into this narrative.

There are lots of other things that haven't made it into the story: emergency medication changes when frustrated outbursts returned at school; disappointing (even disturbing) experiences with a behavioral consultant whom we had grown to love but who seemed, in the end, to put doctrine and dogma ahead of heart and healing; and plenty of nights lying awake wondering how our girl will be getting along five years from now — when she's exiting her teen years rather than entering them.

What I'm left with at the end of 2010 and the start of 2011 is the reality that even with all of her growth and changes, that even with all her efforts and those of everyone around her, that our girl is quite different than other girls. Very, very different. And she probably always will be.

We've known since 2005 that this was more than a little speech delay and low-frustration tolerance that she would grow out of. And we've known since 2007 that the social challenges that our girl faces are not easy to remediate. And now we know that some things are mutable and some are not. She's learned to read, against the dire predictions of some naysayers. Her social skills, while limited, are evolving. And, with the help of an SSRI medication and lots of behavior interventions, she's developing a somewhat enhanced capacity to think before responding.

And so, looking back at the last five years of this blog, and looking forward to the next five years of our girl's life, I wonder what's the best thing I can be doing for her? Hindsight is a poor substitute for foresight, but hindsight is what we get with this one-way temporality that we humans have. Don't you sometimes really wanna break out your crystal ball? I'd even settle for a friendly visit from the ghost of New Year's future as all these questions continue . . .

Should we send her to a school for kids who have more ASD-type neurology or should be keep her where she is, where she knows everyone and there are lots of neurotypical-ish models and high academic standards?

Should we apply for Social Security Disability since it's hard to know how she'll ever support herself, or should we continue to hold out the belief (which sometimes feels only like a hope) that she will be a fully contributing and self-supporting member in this society?

Should we move out of the city, or stay put because it is familiar and we have great doctors and other resources here?

Hopefully some answers will emerge in 2011. In the meantime, happy new year 2011 to all of you who share our life at Autism's Edges. Here's to year of unfolding answers! Any clues, crystal balls, or prognostications you may have are welcome!


Anonymous said...

Hello! I have to say, I really hope that this year involves more writing. Selfish selfish me, I know... But your daughter sounds so much like mine [who is about to turn 3, so I'm sure that sounds weird] for some reason... And I get this strange feeling that your words and thoughts are kin to where I will be at in years to come. It gives me a sense of peace, and also helps me to realize that I will probably never have all my answers. :) I was just thinking a few hours ago, about how one year ago we 'just thought she needed a little speech therapy'. Gag.

I was in Hobby lobby last week, and ran across the most beautiful picture frame for a girls room, with the words "best friends" on the bottom. And I wondered if she would ever have a best friend, or any real friends at all... and I know it's pitiful in a way to let my mind go there - but it's also reality. I just don't know where she will be in the future. AND THAT is the hardest thing with this disability, the monstrous range of possibilities, that leave me constantly balancing being optimistic yet realistic, leaving no room for an idea of ANYTHING...
gads I'm wordy.
you KIND OF asked for feedback, so I'll give you my two cents:
-I applied last july for SSI, and was awarded it, but barely. It's not easy to qualify. However, I do think its worthwhile for her benefit in the long run. If she doesn't qualify now because of her dependency status, then perhaps again when 18, but it doesnt hurt to try.
-I just yesterday had a long discussion with my new ECES about mainstreaming. She's worked here in our local BOCES office for over 20 years, and said that although there are benefits to not mainstreaming, the ending result is that children have gotten so much further than 'they' ever thought possible, because of hte mainstreamed environment. Personally, I also feel that NT children and teachers and community have some very valuable lessens [albeit at our children's cost] to learn... My common quote these days is simply "one out of every 110 children have autism. if you don't know someone now, [with it] YOU WILL."
-Last, I live in a very rural area. Getting benefits can be difficult, but there are amazing benefits here as well. If you ever want further discussion about this, send me an email: daleth_mccoy [at] hotmail dot com. :) I also have a 15 year old son, he loves it here too.

best wishes!

Anonymous said...

OMG, I just spent 15 minutes typing you a comment only for blogger to have an error. aargh! My crystal ball with have to replenish, and then, I will be back!

MothersVox said...

Welcome Vision of Autism! I think your comment did not vanish . . . is this it? I have "comment moderation" on because I got tired of scrubbing spam from the comments . . . it just got ridiculous.

Your comments are so very helpful! Thank you! I'm thinking about everything you've said -- how the broad possibilities of outcomes makes it challenging to know what to do at any given time.

I'll write more about this tomorrow. Come on back!