Posts Tagged ‘Governor Cuomo’

And so the child who once wouldn’t wear a hat or a hood or a cap, no matter what the circumstance, is now the teenager who wears his hood up and tied securely around his face.  I have several photos of him, several weeks in a row, sitting in the back on car ride (he hasn’t been coming in to Andy’s apartment for his visits lately).  In each photo he’s got the blue coat on with its hood up.  Last Sunday while parked in Andy’s driveway, Jonah declared blue shirt on?  – so Andy went inside and changed into one of many blue shirts he keeps in a special place for just such a request.  Thus appropriately garbed, he got back in the car and prepared for another ride.

My mother, who stays back at the apartment for these rides, visits Jonah in the car when we come back and park after each loop.  Nearly always she has a cheeseburger and fries, and this week she’d brought him 4 Thin Mint Girl Scout cookies as well.  Jonah has been happy, silly, all smiles and loving his rides, rocking in his seat to hip-hop and Top 40, wanting it as loud as we’ll allow.  On?  On?!  (It means louder, please in Jonahspeak). There is a CD of dance music I made for him more than ten years ago now, and he asks for it by requesting Mama CD?  Week after week, once this particular CD is in, he requests 3 specific numbers of song tracks and then says all done mama CD.

This time, however, we pulled into the driveway during the 3rd song – and, distracted by grandma and cheeseburger, Jonah wasn’t on top of his DJ game so the CD continued to play.  I didn’t know he could even see the track numbers on the dashboard CD display, but when Andy got back in the car for a second loop, Jonah piped up: 13?  

Andy went to track 13, the song Funkytown came on, and Jonah wanted it louder right away:  On?  When it was over he said 13? again.  And again, and then once more, before deciding he’d had enough talkin’ bout moo-ooo-vin’ and wanted some radio.  Last weekend I was fighting off a migraine and had to cut my visit one loop short because I couldn’t take another song.

Hopefully, with the coming of the springtime we’ll get him out of the car and into the apartment or over to the park, even.  For now we’re all just collectively grateful he’s been good.  His move to the new residence seems to have coincided with the good, though I hate to play the cause and effect game, as it proves faulty at least some of the time.

Grateful are we, as always, to the caregivers at his residence and school.  Last week I walked down to the Capitol and joined hundreds of other parents, care workers, and clients for the Be Fair to Direct Care rally.  We are asking Governor Cuomo to include at least 45 million dollars in the budget for an increase in pay for direct care workers throughout New York State.  Anderson parents were asked to bring a photo of our child, so I came with Jonah’s picture and cheered with the others when the Governor himself, in a rare personal appearance, came out to address the crowd and promise he wouldn’t sign the budget without the requested money in it.

Direct care workers deserve fair pay – excellent pay, even – for they protect, feed, clean, play with, and comfort our kids.  They deal with all manner of random issues working with them – things that are frightening, or gross, or just plain exhausting.

I was proud and honored to be a part of this effort on their behalf.

P.S.  Yes, I changed the name of the blog.  It feels right to do it now, and I like it better.  Until next time…

Jonah and I say thank you to all caregivers everywhere – and Happy Spring to you all!

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I was happy to hear on Saturday morning that Governor Cuomo signed the same-sex marriage bill into law.   2011 is ashamedly late for this to be happening, but at least it finally is here.  Equality and inclusion.  As one comedian said, “Gay people should have the right to be miserable, too.”

So in the afternoon, D came to help me watch Jonah for a while, and we rode him around,  meandering all over God’s creation – past ominous black cloud masses, through driving rain as amazing & short-lived as the taste of Fruit Stripe gum,  finally stopping at one of the Albany Airport’s car turn-offs where you can watch the planes take off and land.  There we saw a huge rainbow in the sky –  D took this pic with her phone and e-mailed it to me; of course it looked so much prettier and vibrant in person…

A rainbow the very first day of same-sex marriage equality in New York State!  God’s nod, I said.  D liked that and posted it on facebook.

Of course we stayed just a little too long for Jonah’s liking and so he started unbuckling all of his harness fasteners, the sound a now-familiar harbinger to his freak outs – this one ending with D and Jonah on the grass outside the car.  Safe hands and body was our mantra, D handling Jonah in the calm, seemingly unfazed manner only one with the expertise of working with these kids can pull off…me standing back, arms folded nervously, not sure what to do – a disempowered, frightened mom.   I got it together quickly enough and was grateful it was D who was with me.  She doesn’t call me on my mental state or make me feel bad about its weakness.   She’s supportive and silent, and so we all just move on down the road.  Sometimes she is my sister and sometimes she is my savior.

I should be used to Jonah’s attacking, but whether it is M or Andy or D in the car with me, when Jonah flips out I go unwillingly to a place inside my head that feels like a little girl place – scared out of my mind, horrified at my child intending to do me and others harm.  I go right into verge-of-tears helpless-mom mode.

Meanwhile Andy walks around with wrists (on both sides) slashed with scratches, making him look like he’d recently, half-halfheartedly, continually attempted suicide with a weak grasp on a plastic knife.


Daddy?  Huck?  Jonah will say, meekly and sweet, followed once with both skinny little arms wrapping around Andy’s neck, gently and loving -& minutes later those same skinny little arms shooting out to grab/bend/throw daddy’s glasses with one hand and scratch blindly with the other.  That kind of pendulum-swing can mess with a person’s head after a while.  If I feel like I’ve lost it, what must Andy feel?

Then, at times Jonah is pensive, listening, almost Buddha-like in his own little zen way.

When D and I were driving Jonah home after leaving the airport, once in a while he’d sing little snatches of Cake, or Guster, or Paul Simon songs, in tune and perfect rhythm — and D and I would look at each other and say awwww.  He is first a child-demon and next an engaging angel.

By Monday or Tuesday we should know Anderson’s answer. Andy and I are leaving at 6am Tuesday morning to take Jonah to Children’s Hospital in Boston, where he’ll see a pediatric rheumatologist.  I don’t know how in hell we’re going to make it to Boston and back safely, let alone out of the car and into the hospital itself.

As Brett on Match Game would say: Good gravy.   As I would say: shit.

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