Autism Moves Out

I had two meetings last week.  One was with a team that provides housing and care in the Orlando area to people with developmental disabilities through a variety of facilities.   The other meeting was with a person deeply dedicated to education and support for special needs children, with ties to the academic, the PR and the financial worlds.

This was not a typical week in Kathleenland.  Less carpool and more business plans. As I sat in the Mexican restaurant that night, hoarding my own personal salsa bowl, eyeing the waiter for another margarita and listening to publicity this, architecture that, and employment what, I found myself wondering what happened.  How did I get here?

How did all of this start?

Well, I’ll start with what I know:  I know I am not good at taking “No” for an answer.  (Just ask my poor mother.) This character trait has served me well most of my life.  It has gotten me out of situations and into places before.  I”m pleased to say there are no arrest records or embarrassing tattoos so far, and I’ve gotten into lots of places for free.

Of course, autism doesn’t take “No” for an answer either.  And this has set the ground for the ongoing major conflict of my life.  The Irresistible Condition meets the Immovable Mother.  Cue John Williams soundtrack.  When people talk about “The Face of Autism,” they generally mean charming examples of children, and the images of dedicated parents and teachers leading the way…all things that just makes you want to say “Yes!”  What they don’t think about is “The OTHER Face of Autism” which involves insurance companies and state and federal agencies and physician offices and a whole lot of organizations whose reflex response is usually “No.”

So a genetic inability to take “No” for an answer has helped immensely over the years in getting what CJ needs.  I found out very quickly that entitlement was a very small part of the picture.  Oh, services existed, but you were not guaranteed them, tax dollars paid or need notwithstanding.  And once you called or applied, you would quickly and easily become a number in a pile, competing with thousands of other numbers for attention of someone’s desk.  I also realized that there was more than one way to be told “No.”  I didn’t need a person on the phone saying it in my ear.  Just the days and weeks and months of waiting in the silence with no reply was a kind of “No” too.

Did I mention I don’t do “No” well?

The squeaky wheel does get the grease.  Everyone knows that.  It’s true.  I learned to squeak.  But I found out that the kind of grease was just as important as the squeaking.  I learned to grease nicely.  Politely.  Relentlessly.  My grease is now a fine mix of “thank you so much” and “I know that when you understand everything I’m about to tell you, everything will get straightened out because you’re the wonderful, thoughtful, compassionate person who is going to help me solve this problem,” and “Of course, and I will call you tomorrow to follow up.  And the next day.  And the next.”   It’s a delicate operation.   Too much grease and you present as a harassing stalker and you drop to the bottom of the pile.  Not enough grease and you just plain don’t move.

I also realized that insurance companies wouldn’t pay for therapies.  If there were things your child needed, you had to figure out how to pay for them yourself.  I knew a few people who did have money or had family with money and they sailed through.  Most people, however, were flying by the seat of their pants.  I met one woman who was cleaning out her carefully planned retirement accounts one by one as her child grew.  I met other people who were setting up “home programs” (insert “desperately attempting to do as much as home as they could”).

And through it all, I kept thinking that if I had money, a lot of money, I would set up a foundation that helped people with the these costs.  When something like this becomes your “lottery dream” instead of a vacation house in Aruba, you know things have begun to change in your life.  The whole “Foundation” thing has stayed with me.  It changes based on our needs and the needs of people I know.  As schools open, I think how nice it would be to fund tuition for the kids who need it.  I keep dreaming and “the Foundation” is always there in the back of my mind.

A few years ago, I had a mother tell me that there was no housing for adults with autism.  Well, I just knew she was confused, as I had talked to “my” people about services and what the future would look like.  They had explained to me how it would work when he was an adult.

The problem here was that this mother was a good friend…someone who knew what she was talking about.  The snake had entered my garden.

I did some checking.  And yes…there WAS housing.  Yes, CJ was eligible when he turned 18, or even younger in a crisis situation.  However…there was no “available” housing.

NONE.

My friend told me that she and her husband were considering buying a home themselves.  They had even looked into using their current home to house their adult child and moving themselves into something smaller.  Wow.  Now my ears were open.  Not long after that, another mom told me that she was thinking about trying to get some parents together to buy a house and try to staff it or “co-op” it.  OK.  Now, someone is trying to tell me something.

CJ was about 16 at this time.  Their kids were older, and I had a few years…no big hurry.  But…I have learned over the years to “be prepared” (I was a Girl Scout, after all).  So, I started talking to people and getting information.

Are there homes? Is there housing?  Yes.  Is there a wait list for these?  Oh, yes.  Years worth.  And is there housing that I would be okay with CJ living in?  Housing within reasonable driving distance?  Housing that would let CJ live at the top of his range of abilities?  Housing that would foster the need for friends and reasonable socialization, taking into account the limits that autism puts on how he can be social?  Is there housing where CJ could be happy?  Housing that could be a real home and not just an institution?

Maybe not so much.

About six months ago, I got a call from Judy Owen, an old high school friend.  She blogs for Forbes at www.forbes.com/sites/judyowen/, which is really cool.  Even more cool,  Judy started an employment agency in St. Pete, Florida for persons with developmental disabilities.  Opportunity Works (www.opportunity-works.com).  Check it out.

Judy had called to ask me to be her “plus 1” at a benefit for the Able Trust.  It sounded great!  Let me make it happen!  I ran home and Googled it.  $1100 for a table at this benefit, with a silent auction.  And me with nothing to wear.

But…I made it happen.  And before I knew it, I was at the Orlando Museum of Art.  Very nice.  I don’t get out much (shopping at WalMart does NOT count), so it was extra fun for me.  I figured I’d go along, stare at the dresses and drink the wine and just have a pleasant evening. I mean, I kind of know the drill with this sort of thing.  Fish out of water I might be, but shy, I am not.  I introduced myself to everyone.  And of course, they always asked “So what do you do?” And when I said that I stay home to care for my son who is autistic, usually the “shield of politeness” comes up.  It’s invisible, but unmistakable when it is raised. People are always nice, but once they realize my life is out of their range and I have nothing to add to their ambitions, they look to move on.

Not tonight.

People would turn to me, they would lean in and show more interest.  They would ask me questions. They cared about my answers. They wanted information from me.  Strangely, I seemed to have information they wanted.  I had to think of answers as no one had asked me some of these questions before.

One man asked my favorite question.  “What are your son’s goals for the next 5 years?”   I actually laughed.  I said that his goal in life was to sit in front of the TV, eat chips and “rewind, play, rewind, play”.  The guy laughed and said, “Isn’t that every man’s goal?”  Funny, but he was serious, though.  They all were.  What were our needs?  What were they doing or not doing that would affect us or someone like us?  Each of them in turn introduced me to others that they knew.  My head was spinning.  I hadn’t brought a notebook to record all of this.  I couldn’t even keep them all straight.

I met the new dean of the Marino College opening in Ft. Lauderdale.  I met people with Project TEN who help with post-secondary training.  I met people with the Able Trust.  And about 10 others that I can’t remember because Judy didn’t tell me I’d need to take notes in between drinks.

The most interesting conversation I had was with the man from the Agency for Persons with Disabilities in Florida.  He went out of his way to talk to me for a long time.  He explained that nothing is going to change in FL with APD.  From talking to people in other states, it appears that the only changes that are happening anywhere are negative.  There wasn’t any kind of program or plan on the horizon that acknowledged that half a million adults with autism are on their way to Housing Nowhere.  He told me that what I needed to do was to get with some other parents and find a house, apartment or condo to rent.  He suggested we staff it with college students, as typical care workers tend to be unreliable.  (Now THAT I knew…although it’s sobering that college students, who are allowed to be transient because hey! it’s college!…they are considered more reliable that the average care worker.)  He was confirming I was on the right track with doing it myself, and sadly, there was no silver platter or lottery coming my way.

But there still was this Foundation thing….

Later, I got with Judy to try to sort out who was who.  I actually made a list and typed up notes.  Lists lead to more lists.  Ideas started leading to other ideas.  And people to people.  All of a sudden, this wasn’t just a pipe dream.  All of the sudden, this idea of mine wasn’t just in my head.  It was bigger than I thought.  It was bigger than me.  All of a sudden, it was real.

Six months feels like a long time ago. I’m way ahead of where I was, and I’ve gotten repeated confirmation that I’m on the right track.

A house for CJ is going to happen.