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Posts Tagged ‘Anderson School for Autism’

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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Every year at Jonah’s school they have Harvest Day with food and fun, games for the kids, school tours for the parents/grandparents, etc.  Harvest Day 2013 was this past Saturday; my mom and I went together to visit Jonah’s classroom.  Andy had taken him for an overnight the night before, so we visited there first, then drove the 5 miles to the school, and back to the apartment afterward.

So we saw Boo’s classroom and spoke with his teacher and an assistant teacher.  We snacked on apple cider & apple cider donuts, looked through piles of worksheets and construction paper creations (plus one bottle of blue water with “fish” and “sand” in it).  I loved at it all and brought everything home with me, even unrecognizable scribbles or coloring books he’d made out of pages and a piece of string to tie it all together, the pages crayoned heavily, each in one color only and with no attempt at staying in the lines.  It was almost as if he didn’t see the picture at all and instead just filled the page with color.

They also told us Jonah has been mostly very happy and good in school for a few weeks now (and his residence peeps say the same thing), and my mother and I were both thinking:  It’s when the doctor lowered the steroid eyedrop dosage from every two hours to just twice a day.  Maybe that’s it, and now his aggression will dissipate.  Please God…

One doctor told me when you are given steroids through eyedrops, it doesn’t really have very much effect on mood or behavior.  But I was once a Deadhead, doc, and have seen people use an eyedropper to take acid because it was the fastest way to get the drug into the system –better absorption, quicker effect.  So I find it hard to believe that steroids, no matter how they’re given, don’t have any bearing on Jonah’s behaviors.  In fact if I piece it all together (which this blog helps me do), his behaviors began the summer after we started him on steroid eyedrops, back before we knew he had iritis or uveitis.  Andy noticed his eye was red so we took him to an eye doc, and the first eyedrops didn’t work, and the whole saga began.  Nearly four years ago? 

So now Jonah has no vision (or hardly any) in his left eye, but his behaviors are more easily avoided with positive reinforcement and by reminding him it’s okay if he needs to take a break.  All he has to do is ask for one and he gets it.  I think it’s even in his IEP.  These people who teach and care for Jonah have good ideas and incredible dedication.  They are happy, optimistic, hard-working.  They are amazing.  And God help me but I don’t so much mind the trade:  sight in one of Jonah’s eyes for his overall happiness and well-being – for no more aggression, or way less of it.  Maybe the steroids caused the aggression the whole time…

…and yes we both know correlation does not necessarily imply causation, but then again sometimes it does, dammit. Sometimes it does.  We are in hopeland, holding tight to the pendulum lest it swing back, as if we had the strength to keep it from doing anything but what it does.  But Jonah has been happy, lovey, laughing and giggling – at the doctor, at Andy’s apartment, during our car rides:

happy boo

happy boo in andy’a apartment.  needs a napkin!

happy boo

happy boo at the pediatric rheumatologist, rocking the wrinkled collar

happy boo

happy boo, laughing on a car ride

Of course I could be wrong about it all but hopeland feels good and is so filled with joy – there really is no reason to leave.

But I digress.

Only one couple was there when we were talking with Jonah’s teachers, and they left the room after a bit, so my mom and I could ask more questions about Boo.  Seems his favorite day is Friday, when he can declare/ask no school tomorrow?!  I suppose in this sense he’s like a lot of other 11-year-olds.

So on the way out, we stopped at a table where two ladies were selling cards.  A set of 10 is $10, and you get two cards each of four designs, themed for summer/flowers, wintertime, etc…and every design is created by a student at the school.  Last year I bought two packages, and I was planning to buy two more.  I chose two ‘summers’ and was about to pay when I first introduced myself.  “I’m Jonah’s mother,” I told them, figuring they’ll know who he is — he’s the only Jonah in the school.  “Oh!” one of the ladies said.  “Jonah has a design this year.”  And she pulled out the “winter” package. 

I immediately dropped the two others and bought two “winters” without even seeing Jonah’s design.  I was so eager to look through them, and amazed that Jonah’s artwork has been chosen for a card!  I mean, the designs are always pretty good – and some are really good.  But Jonah just isn’t interested in art or drawing.

Therefore, I found all this hard to believe.

The cards come in see-through plastic packages, and the card you can see through the front panel of the “winter” package is this:

OLYMPUS DIGITAL CAMERA

Cool, right?   I thought so.  Here’s the next one:

OLYMPUS DIGITAL CAMERA

Downright amazing, yes?  I was secretly hoping this one was Jonah’s – but no.  The third card out of four was next:

OLYMPUS DIGITAL CAMERA

Nice use of cotton for the snow, right?   Another goodie.

So last comes Jonah’s masterpiece, entitled, simply, “Elf” — of course I loved that he did an elf…

???????????????????????????????

It was all I could do not to crack up laughing right at the table.

I’m thinking to myself, this is the card in the box that people don’t even send.  I love it with all my heart, even as I laugh.  I’m so proud of my Boo.  You see how he signs his name?  He starts off on the right, with JON — then moves over to the left side to add AH.

HOPELAND ART AUCTION:  We’ll start the bidding at a hundred dollars.

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I love Guster in the same inexplicably passionate way I love very few other things.  Laura Ingalls WilderElfquest.  My beloved books, some that I’ve read dozens of times.

I’ll never forget the winter of 2002-2003, the first time I heard Guster – in the car, rounding the bend of Buckingham Pond, on EQX: the song was Barrel of a Gun.  I forgot about wherever it was that I was headed and went straight to the closest music shop.  I didn’t know the name of the band or the song, so I sang it to the guy behind the counter.  “I have to have this,” I demanded.  He nodded in an okay, just please don’t hurt me way and, luckily, knew just what I was singing, so was able to provide my first Guster CD:  Lost and Gone Forever.  I’ve been hooked ever since and have, quite unapologetically, seen 9 or 10 shows now.

My ability to expound on Guster in an uncool fashion really warrants its very own blog, so I won’t torture you too much about it here.  Suffice it to say that I was incredibly excited to be able to see them 2 nights in a row, on Black Friday and Whatever They Call The Saturday After That, in Montclair, NJ at the Wellmont Theatre.

First, though, was Thanksgiving.  My mom, God bless her, made a whole dinner – some for M and me and some for Andy.  We drove down together to see Boo and bring him to Andy’s apartment, where we all had turkey sandwiches and black soda for lunch.  Jonah took his usual two baths while we were there…

Jonah, of the water

…and then we took Boo for his regularly requested car ride? and came back to the apartment.  My mom and I left after Jonah’s second bath and another request for car ride.  During car ride I asked Andy to put Guster’s Easy Wonderful in the CD player, and Jonah and I sang songs in the backseat, moving our clasped safe hands up and down to the rhythm, singing the oooo-oooo-oooo-oooo-oooo part of Architects and Engineers like two little grinning goofballs… Jonah bursting out in a laugh every so often.  He loves Guster too now.  Score.

I like to joke that I have a bachelor’s degree in Guster and am working on my Master’s.  I know to bring canned food and ping pong balls to their shows, and I know better than to try to win the “meet and greet the band” prize after the show.  One time when I set out to win (and did win, by bringing box after box of food) the opportunity to meet and greet the band, I brought them a gift bag full of cookies and goodies, a mix-CD, and a letter that undoubtedly said something very very geeky.  Brian-the-drummer came out first after the show, and tears came to my eyes.  I was barely able to choke out “Your music makes me so happy” before I abandoned all hope of appearing normal, shoved the gift bag at him, began to cry, and ran away.  Fail.

But the shows were both fantastic, each featuring a different song off their first album, Parachute.  They almost never play songs off Parachute live, and they said it had been something like 18 years since they’d played either song.  To those of you who may be reading and knew me in high school:  nothing’s changed.  I’m still the geeky girl.

So here are some pictures of the shows.  At one point Ryan put a disco ball on his head; all the lights hitting it made the whole place a big disco – always the whole band and crowd laughing, dancing, joyful, energized by some cool twist on every song.

Adam on the horn

Ryan singing and jamming

All the Gusters

…and Ryan with his disco ball head.

I want to bring Jonah to a show.  I hope someday I can.  If not we’ll just keep on singing Guster songs.

While I was in New Jersey I was contacted by A.H., another beautiful singer from Shaker High School.  She said that a group was getting together that night (Saturday) to reminisce about Mr. Fleischer – but I was a state away.  Shit.  I would’ve loved to see everyone (and beg two or three people to sing).  I am so touched by the comments my old peeps, and Ned’s old peeps,  have left me.

Lives intertwined.  It’s all so amazing, this world and how it works.

P.S.  Jack and Almanzo are buddies now.

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