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Posts Tagged ‘Autism advocacy’

I’ve been sick, finally feeling a little better.  There are major changes in my house.  Almost overnight M decided he’d had enough of being a couch potato.  He joined a gym and goes every day at 5am.  He bought all kinds of vegetables, fruit, wheat germ, seltzer, salmon, low-fat milk, nuts and berries and healthy shit.  So I’m trying to get on board to encourage and support him by exercising, doing weights, and eating well, but I still sneak a coke once a day or two.  Soda…it’s my worst vice.  How funny is that?  I don’t even drink alcohol, or even eat much meat anymore.

I was pretty sick on Saturday when I drove my mom down to first get her car from the transmission shop in Kingston and then to Andy’s.  When we arrived at the shop, her car was all fixed and they told her she has a zero balance.  Evidently someone paid the $1800 bill for her. A stranger?  A rich relative?  She doesn’t know and nobody will tell her.  How’s that for an awesome start to the day?  Needless to say my mom was in a happy state of shock when we got to Andy’s.

I’d seen Jonah two days the week before, for two different doc appointments two days apart…his juvenile arthritis doc and his eye specialist (the one who did his operation).  Both times I met the incredibly awesome caregivers from Anderson School who transport the children to their doc appointments.   Every single one of them is amazing, even when they must be so very tired from getting up at the crack of dawn to gather Jonah and drive him 90 minutes to an 8am doctor appointment.

Not only was Jonah a little angel for both appointments, but we get great news from both doctors too.  His arthritis has mitigated and the pressure in both his eyes is nice and low – 12 in one eye and 17 in the other.  I asked the eye doc if his left eye had any sight at all and she said not really, he can just see shadows, which I knew but couldn’t help asking again.  Now we just protect that right eye with everything we’ve got.

Happy Boo

Happy Boo

When we arrived at Andy’s apartment Jonah was good again…lovey and eager to take my mom’s soft case, unzip it, and put all the sandwiches, bags of chips, and drinks away, opening cabinets and the fridge and systematically putting everything in its place.  He even did the dishes (well, a coffee cup and a plate) with aplomb.

diligently working

diligently working

He has come so far and done so much in the 2 1/2 years he’s been living and learning at the Anderson School for Autism.  He is more and more independent every day, with fewer aggressions, and I couldn’t be happier or prouder or more grateful.   I can’t believe he is almost 12.

I was contacted recently by a mom who is in a similar situation we were in, and I promised to help her in any way I can.  The bottom line is there needs to be a place where children who need residential placement can go until there is an opening somewhere.  Without it families are torn apart (the woman who contacted me had to move her two other children to a relative’s house for their safety).  It is not a matter of convenience.  It is a matter of sanity.  Of danger.  Of real risk of injury or even death, especially if the aggressive child is big, strong, or, like Jonah, simply out of control – smashing TVs, windows, and hitting, kicking, biting…

It is a disgusting thing when the most vulnerable population becomes also dangerous, and there is nowhere to turn for help.  Not the police, not the local psych centers, not the ER.  Nowhere. 

I promised long ago (and in this blog) that I would advocate someday, and so here I go.  There is an advocacy day in downtown Albany on the 11th and I will be there along with people from Anderson and other concerned nonprofits, fighting for COLA (cost of living adjustment) which has been denied these important nonprofits for 6 years.  Then I am going to make  appointments with my assemblyman and senator.  Hopefully I can get some other moms and someone from Anderson to come with me, and we can make some change happen.  How, I don’t know.  I need to research.  I need to learn how these things work.   And I need to control my temper, because this REALLY pisses me off.

On a terrible note, I was shocked and saddened to hear of Philip Seymour Hoffman‘s death-by-heroin.  Good God, what a waste of a fantastic actor and father and, evidently, a really cool guy, his rumored temper/testiness notwithstanding.  Heroin is the devil.  The needle and the damage done.  I wish these actors and musicians and everyone could learn from those who have gone before them.  I guess nobody thinks it can happen to them.

But now that Boo is doing better I can focus on this work, on my work with Modest Needs (I am learning to be a Grant Writer), and my work with the Interfaith Partnership for the Homeless.  Not to mention learning to play guitar, and getting healthier and stronger and smarter and happier.

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