Autism Moves Out

Johnny Cash and June Carter Cash laid down a music track in the 60’s that made rock and roll history when they recorded “Ring of Fire.”  And it wasn’t just any old fiery ring.  It was a “burnin’” ring of fire.  Seriously off putting.  A serious warning.

I always thought they were talking about the heartbreak of passionate love gone wrong, involving months of emotional recovery, and maybe a trip to the doctor for antibiotics.  Turns out, they were talking about dealing with the State of Florida and the Social Security Administration.

I tend to think of the government as a three-ring circus, as a matter of routine.  Except there’s, like, several thousand rings:  Congress, the legal system, HUD, DOT, the IRS, the DMV and of course, the SSA, to name a few.  At some point, all of us will be called upon to perform in one or more of these rings.  It’s called “doing one’s civic duty,” otherwise known as “avoiding prosecution.”

And how does one perform, once in the ring?  Why, by jumping through hoops, of course.  Big hoops, little hoops, hoops between two high stands, high hoops, low hoops.  And if it’s your misfortune to be called to interact with the DMV or the SSA…burning hoops.

Burnin’ rings of red tapey fire.

Of course, at the circus, it’s all cute little acts with cute little dogs (even cuter if they’re rescue dogs).  Once in a while, you get ponies or even lions and tigers (no one mentions if these are rescues, but they must be…only people run away to join the circus).  And big, small, tooth or claw, everyone is jumping through hoops.

Sometimes I feel like one of those animals.  Except not so cute.  And there’s no rescue in sight.

Ring 1:  We hire a lawyer to draw us pictures of all the hoops we’ll be jumping through to become Guardian Advocates and mapping out the order of the jumping.  We fill out all the documents.  We pay all the fees.  We dance.  We sing.  We wait.

Tah dah!  We are officially Guardian Advocates for CJ!  Nice jumping!

Ring 2:  The GA paperwork comes back.   We’ve passed.  We’re in the club.  Except now we’re told that we have to take a class.  A class.  Well…why not?  Why wouldn’t we have to take a class?  I mean, we’ve only been CJ’s parents for 18 years.  Of course, we didn’t need a class for that.  But now they require a class, so a class we’ll take!

It’s a hoop.  I jump.  I go on line.  I call.  I email.  I knock.  It turns out that in the entire central Florida area there are exactly two locations to take this class.  Okay…I can drive.  Oh but look! There are exactly two dates between us getting the paperwork and the deadline for the class.  If we do not take this class, we are in contempt of court.  Poof!  Burnin’ ring!

I am told by our attorney’s office and the people who conduct the classes that the courts are usually not really strict on it.   Yeah, I’m sure you’re very nice people, but…let’s just not take that chance.  Because if you look up “Poster Child” in the Burnin’ Ring Guide Book index, there’s a blank spot just waiting for my picture.   Just what I want to be, the one case that they decided to be strict with.  Kathleen Williams, “The Accidental Example.”

So…I sign us up.  Us.  Oh yes, my husband and I BOTH have to go.  And look!  If we go together, we can save $50.  Apparently, you can put a price on togetherness and it’s the price of your desire to be alone less fifty bucks.  I make arrangements for childcare.  Medium hoop.  My husband takes off work.  Little hoop masquerading as a big hoop. We jump.  We pose.  Man, look at how nicely those hoops are lined up!

Then I get the phone call.   The class date has been moved.  Poof!  Burnin’ ring!

The message on my phone states:  “The class has been moved to 10/31.  Don’t worry.  No costumes are required.”

Costumes???  What on earth does that have to do with anything?  Can you imagine the picture in my mind, given my circus idea??  I finally calm down and realize that day will be Halloween.  Obviously, my sense of humor is gone by now, scorched by the fiery hoop in front of me.  There is nothing I can do. It’s the government.   I call my husband. “Switch your day off!  Immediately!!!”  I call my friend.  “Can you switch everything you already switched around to help me with childcare??”  I call the government a few names, in private.    Then I break down.  I am DONE!

No, I’m not.

Ring 3:  Social Security Disability.   The Social Security Administration wants proof of CJ’s disability.  Our paperwork plus the doctor’s paperwork isn’t enough.  They want living, in-the-flesh, proof that Autism isn’t just a fancy word for defrauding the US government.  As a US tax payer wanting to know my tax dollars are being well managed, fair enough.  As a wife, mother and imminent Foundation founder with a calendar too fat to fit in my purse any more, give me a break!  But hey!  It’s a hoop!  Uncle Sam says jump, I say “how high?”

Hoops, hoops, hoops.  We fill out the paperwork.  I send in all the documents. We get a phone call to set up an interview.  That morning, I take CJ out of school.  As I roll to the appointment with CJ muttering and commenting continuously in the car seat next to me, clearly with no idea that our financial lives are basically on the line, I work myself into a quiet state.  Will he pass?  I mean, will he fail?  Will he pass by failing?  I mean…wait…and could they possibly evaluate CJ and determine that he is NOT disabled and tell me to ship him off to the Marines or something??  Poof!  Burnin’ ring, jumbo sized!

I am sure that I am going to have a full blown panic attack now.  But in to the SSA we go.  If anyone notices the smell of my well-singed imagination, they are too polite to mention it.  The funny thing is, the SSI people have all been nice.  I mean really nice.  Really, really nice and very, very helpful.  The people on the phone.  The person who did the interview.  I was shocked, frankly.  They all have such a horrible reputation for obstructing and denying.  But it was all fine.  I did not have a panic attack.  CJ was not shipped off to the Air Force.   Now what?  Now we wait.  Of course we do.  “They” will notify us of any additional information they need.  “They” may want us to have an independent evaluation.  OK.

Oh look!  Another hoop.

Back home, I ask around.  I’m told by everyone who has any experience with this process that once they get the doctor’s notes, they usually drop the request for the individual evaluation.  In fact, I can’t find one person I know that actually had to go through that.  We, however, are special.  We have to do it.  Our reputation as prodigious hoop jumpers must be getting around.

I get a letter in the mail on Wednesday stating “they” have scheduled an appointment for us with a doctor at 3 PM the next Tuesday, approximately 30-45 minutes from our house.  OK.  Here we go again.  Pull CJ out of school.  But what to do with Elizabeth?  She gets out of school at…you guessed it…3 PM.

OK, fine, I’ll jump.  I’ll pull her out of school early and bring her with us.  No…no, I won’t, because the paperwork specifically states that you may NOT bring any children with you to the appointment and you may only bring one other adult with you.  The longer I thought about that, the weirder it got.  I assume the prohibition on extra kids is to keep distractions out, but the extra adult?  Would that be to hold CJ down or to talk me out of my tree?  Maybe it’s to hold the now-flaming hoop of this appointment.

I call my friend, again.  Help!  She says she will pick up Elizabeth and keep her until we are done.  And when will we be done?  The paperwork says to plan on “several hours.”  I must admit to some grim laughter at that one.  If we start at 3 PM, we’ll be cutting into CJ’s dinner time by 4:30 or so.  Good luck with that one, Evaluator Doctor Person.  One flaming hoop, right back at ya.

I am thinking it may not take that long once they meet him.  If you’ve met CJ, you’ll understand.

I call the SSI office.  I speak to the woman who was nice, but a little short with me the last time.  She confirms that they have received all the paperwork from the doctor, yes, but it was not enough to make a decision.  Why not?  Well, she can’t even tell if the woman who wrote our letter is a doctor.  Um.  Yes.  Yes, she is.  It clearly states “MD.”  RIGHT ON THE LETTER WHICH WE ARE BOTH LOOKING AT RIGHT NOW.  But…whatever they want.  We will do it.  We will see their doctor.  Please.  Just stop flicking those Bics.

Ring 4:  I’m told CJ needs to bring his photo ID.  But he still doesn’t have one.  Why not?  Because it’s the DMV and why stick your hand in a meat grinder before you have to?  Now I have to.  I quick make an appointment with the DMV (by definition, a burnin’ ring of fire) for the next day, still undecided if he should go for the driver’s license or just get an ID card.  (Who knows?  Christmas is coming.  Maybe we should get him that truck after all. If they decide he’s not disabled, he should be able to drive, right?)

Off we go to get the ID.   It takes less than 25 minutes in and out the door. No fire, no burn, only minor jumping.  The best part of all is when they show us CJ’s photo, and he announces loudly to the entire room, “I love it!”  (It only took 2 takes.  THAT might be a record.)  I look at the photo guy who’s smiling.   “I’ll bet you don’t hear that often,” I say.   Once again, CJ is making them all smile.

Ring 5:  Next stop…the SSI doctor to determine if he can work and support himself.  The SSI worker said the evaluation might take “several hours.”  I figure about five minutes should do it.

Send in the clowns.