Friday, April 8, 2011

A Pox on it All

The protective clothing worn by a 17th-century plague physician. Etching by Paulus Furst of Nuremberg, Germany, 1656. Illustration from Bettmann/Corbis

An update: Henry has the chicken pox -- badly. Sophie is all right, so far. Our trip for spring break is now up in the air. I had an interesting profoundly stressful meeting with the Powers that Be for increased in-home supportive services. I sat in a small conference room with total strangers and a very nice advocate and explained to a virtual judge (he was actually a real judge, but he was on the giant flat-screen tv at the head of the conference table) that my daughter needs 24-hour supervision because of her limited mental reasoning, judgement and memory. I had to argue these points with people who have never met her. I'd like to say that it was a prime example of our tax dollars at work, but that would be happening right now in Washington, D.C. as our representatives bunker down, arguing over funds for pap smears at Planned Parenthood.

As my mother said, Six of one, half a dozen of another.

A little Leonard Cohen is in order:

These Heroics

If I had a shining head
and people turned to stare at me
in the streetcars;
and I could stretch my body
through the bright water
and keep abreast of fish and water snakes;
if I could ruin my feathers
in flight before the sun;
do you think that I would remain in this room,
reciting poems to you,
and making outrageous dreams
with the smallest movements of your mouth?

-- Leonard Cohen


  1. Elizabeth, they never ask to meet Sophie? Make an new assessment? Here I had to take Segev to several meetings "so that he too can have his say". "Don't be surprised if he doesn't say much" I told them.

    Bureaucracy may seem a haggle with the devil but at least you may get something. No such luck here where I am not eligible for in home assistance until Segev reaches 18.

  2. It's an odd world we live in, Elizabeth, judgments made about people sight unseen and then there's the doctor of old protecting himself from contagion.

    What you describe here is perhaps the modern version of such self-protection on the part of the powers that be. But as you say Leonard Cohen brings some comfort.

    Thanks for ending with his words, otherwise I might want to tear my hair out in identification with you, and that would not help any of us, though it might be a comfort for you to know that others near and far commiserate.

  3. Boo chicken pox. Boo bureaucracy. Hurray you.

  4. I took Katie to social services once for a meeting, it stressed them out immensely:)

  5. This is what happens when we live in a plutocracy instead of a meritocracy or a democracy. We have to explain to those in power what "need" means because they don't have the slightest idea since they never experienced any. As the Russian saying goes “The rich would have to eat money if the poor did not provide food.”

    I am sorry about the chicken pox, but the pox I am wishing upon the morons has nothing to do with chickens, but with some wishes written by Shakespeare.

  6. Gnobody knows the trouble I've scene, Gnobody knows but Jesus...

  7. Dear world,

    Please give Elizabeth & Sophie what they need.

    Can you make a video? Show it on the iPad? A project for The big O perhaps?

  8. I'm so sorry about the chicken pox. And, as you know, extend endless empathy about support services, school, all of that.

    Out here in the DC area, I've got steam coming from my ears: medical bills due and I'm about to be out a paycheck. The only consolation is there's no interruptions in my health benefits plan, but, eventually, I will have to pay the back premiums out of my salary, which will wipe out the first paycheck I do receive when, if, they let us go back to work.

    I don't have anything against Planned Parenthood, but I'm very weary of having it become this symbol over which everyone must fight. Because when they make deals to keep funding Planned Parenthood (which does not serve the needs of children), they decide to cut funding for children's medical care, including care for the disabled. It's an awful, morally bankrupt thing on both sides. That we won't ensure our children are taken care of in this country is, surely, a pox upon our House.

  9. Good luck on getting the help at home! She needs it, you need it, your family needs it. I hope it comes through.

  10. I am hoping for you, Sophie and your family.....and am sad to hear the chicken pox have spread... dang that virus!

  11. Since Allegra already said it so well, I will simply say I am sorry.

  12. I have a client who's day care lady is in the process of adopting. Preemie...drug exposed...I could go on and on. She has been head banging for a long time. The DCF worker says, "She'll outgrow that." Really sweetie? Where did you get your medical degree from...oh wait I'm sorry your degree is in under water basket weaving therefore you are not qualified to pass judgment on sensory integration or neurological issues are you?
    So when they move said foster baby to adoptive home they cut the subsidy from over 600/mo to 400.00 Why I asked? This babes complex medical needs haven't changed only her address? The adoptive mom wasn't even informed that she is entitled to a special needs subsidy...i told her about it...oh how they hate me I am sure. This crap goes on daily whether it is via big screen judge or behind closed doors...and yes isn't it just so amazing to people reading your story that these groups make decisions based on NEVER even laying one eyeball on Sophie? People it happens ALL THE TIME. Wake up! We are in deep doo here. PS Scott just signed a bill on March 31st in Florida slashing special needs kids benefits. That's where he is starting his budget cuts. When are these people going to learn that God's "eye is on the sparrow"...not the flesh picking vultures and give value to our special needs population? Read this and weep for Florida:,0,7724142.story I am currently in a battle to maintain my 5 hours a week of personal care assistant for The Teenager. $50.00 dollars a week. I wonder how much Rick Scott pays to eat out weekly...

  13. It's ridiculous that you should be forced to do such a thing. Love to you. Take refuge in Mr. C. x

  14. Well. Damn. Hellfire and shit.
    What crap. Chicken pox (and I'm so sorry my second-case-in-the-house-theory was so wrong) and Powers That Be. All I can say is that Leonard Cohen poem gave my morning a shape and meaning that nothing else could have.
    Thank-you, Elizabeth, for being the light in this world that you are. Thank-you for being part of my world. I HAVE to believe that Higher Powers are higher than Powers-That-Be.
    I have to. Because I know that they are on your side.

  15. Good luck with the home care application. I went through something similar for my 92 year old aunt. it was (is) literally a second job, sometimes a third, too. I cannot imagine how it must feel to be on this high wire for your beloved daughter. May the force be with you. with love.

  16. As if there are not enough battles to fight,wars to wage on behalf of our kids but to sit before a group of people,who haven't even met Sophie,is well,ridiculous and frankly pisses me off.But that is just me.

    I have been at this much shorter of a time than you and really,I have already tired of the round table meetings,I usually shake my head and nod yes,speak occasionally and look at these faces,making decisions,not really knowing her at all,and think,"really people?"Denied a assisted tech eval. recently because"she just isn't quite there".Where the heck is "there" and do they realize she might never arrive at that destination?Rant over ..

    So sorry for Henry and praying and hoping the sweet girl misses it all and that vacation will come off without a hitch.

  17. I'm with Lilith - take Sophie next time, and then excuse yourself to the Ladies' room and ask one of those folks to watch Sophie for you real quick.

    Sarcasm aside, I am thinking of you and your sweet family.

  18. I just don't get it. At all . At all.

  19. thanks you Elizabeth, I know what you do is not easy, and is not done for your own personal benefit. What you do, means alot, to alot of people. Thank you.

    my previous comment was just a reference to more of my craziness from my past, that no one would understand the reference but me. I hope Henry gets well soon.



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