A Team Player!

Another small pin prick of light at the end of a very long tunnel. That's what we saw today. For financial reasons, we have been scaling back on William's ABA therapy, in the hopes that we can stretch our savings to the end of the year. (Not that anything happens at the end of the year, it's just a goal...a line in the sand, I guess you could say.)

So today at breakfast, it's just William and me. Everyone else is either still sleeping or downstairs in the basement. (Thunderdome, as I call it) All of the sudden, he looks out the window, and says "Sure is a bunch of 'em"

Now, to the casual observer, this is fairly meaningless, but for William this is drop-your-spoon-in-shock kind of stuff. This was a spontaneous colloqualism -- he does not say something unless he hears it first, and I am sure I didn't say it. Admittedly, I couldn't get him to eloborate on what there is a bunch of: leaves? grey hairs? Who knows.

But it's a signal from him that we're maybe we're doing the right thing by cutting back on the ABA. This therapy's criticism is that it tends to create rote behavior, it does not encourage dynamic thought. It's a very good treatment to get a kid to learn basic things brush his teeth or ask for what he wants, potty training, and other basic skills that are necessary.

(As far as therapy goes, we are starting to move in an additional direction, to something called RDI. We'll write a bunch more about that later, that's a lot more posts all by itself.)

The point of this meandering rant is that the affirmation that we're doing something right isn't coming from a doctor, therapist, teacher, or anyone else outside of our 4 walls. It's coming directly from William. That's HUGE. We've got a long way to go, but at least we know he's coming along.

A Team Player?

Last week on Thursday morning, Nickie left at 6am to take a friend of ours to the airport. William's typical time to get started in the morning is between 5:30 and 6:30. I sleep very heavily. To quote one of my favorite movies, if I am asleep, I "wouldn't hear a dump truck driving through a nitro-glycerin plant." You starting to sense where I am going with this?

At approximately 7:20 am, our neighor Debbie, God bless her, comes into the house, yelling, "Jawn, Nickie, we have a prawblem!" (She's from Brooklyn)

Seems that William decided to take his big wheel down the street for a morning ride. Ever the free spirit, he decided to go without any pants on.

Now, the neighbors for about 5-10 houses down on either side know who our kid is, and are not ever surprised by seeing a half-naked kid on a big wheel, eating his morning banana. But William got so far, so fast, that a guy leaving for work all the way around the block, probably 1/4 mile from the house thought this sight was kind of strange. I am sure he was thinking "now there's something you don't see every day."

So he fetches William, starts asking him some questions, to which William responded, "it's time to go to the car wash." That was enough for the good samaritan, who started walking back up our street with William, and happened upon a neighbor who DID in fact know who this kid is. So they start up the street with William toward our house, picking up 2 more neighbors along the way.

By the time they ring the doorbell, there is a small army outside of my house, I am opening the door, still trying to get my pants on, rubbing sleep out of my eyes, trying to catch the license plate of the dump truck.

Long story short, the neighbors familiar with William smile, chuckle, and head for home. Good Samaritan #1 leaves with a very suspicious look on his face, probably thinking he better look up the number to social services.

Insurance Woes

So, I have logged 15 phone calls to United Healthcare over the past 11 months, each lasting at least 20 minutes. That is a LOT of lost time. Oh, but it's worth it when I hang up believing that once again, I made the mistake, but if I do this one last fax, certified mailing, etc... I have fallen for that one, well, 15 times!

We were promised reimbursement from United only, ONLY after I happened upon this amazing woman who first informed me there was no information regarding the need for a behavioural therapy lasting more that one hour per session for an autistic person...and who then proceded to record what ABA Therapy is and why a child with limited language/social or self-help skills would need it. I couldn't believe an insurance company wouldn't know any of this. It's not like autism just showed up!

So she does her part and passes it on to the "team". We've waited 2 months for that "promise". Now, I suspect they may be reimbursing a small amount of that promise through our DAN! doctor. What the ****?! Yes, our medical doctor who has nothing to do with behavioural therapy. United Healthcare is the group who berated me for not knowing, "There is a mental health side and a medical health side to United Healthcare. I'm sorry your paperwork has been lost 7 times." Duh...

Now the latest is that I might be able to get CO Autism Society involved and potentially receive money paid last year, even. Now we're talking some serious cash! This would change our entire lives. No more borrowing money from in laws, no more fundraising events, no more marital strife over how much money I spent in groceries this month, no more crying because the Autism Medicaid Waiver cannot bring William on yet, even after a year of waiting.

I'm not an insurance-hater. I'm not a Hillary lover. I just want my baby to be given the chance to be a functioning human. John is killing himself at work with the hope that he can make a big bonus that will cover William's therapy. Meanwhile, our children never see him, I'm hurt that we get his sloppy seconds, and there's still not enough money even after those long hours.

UGH...

BUT, somehow, we are provided for.

We have a dear friend who threw a magnificent fundraising event called, "Finding Color in a Black and White World". It was the most touching evening...and the money that was raised all for William was unbelievable! Another friend applied for a grant for William and got it! Friends have prayed for us, they've taken our children for the weekend so we could get away. Our neighbors watch out for our wandering William...even when he's roaming their yard naked...with such village-like love.

In the end, I think what has happened with our finances is rediculas, don't get me wrong. But, I also think this is the greater plan for John and I to really think about what we are doing with our lives. We've been forced to stop and appreciate the functional washing machine. We think twice before buying a coffee at Starbucks. We now buy tshirts for the kids at Salvation Army. And why not? There's one more dollar for Will's therapy...and maybe one more dollar insurance will perhaps, one day, out of the most random collision of circumstance, reimburse us!? And then, in one flail swoop, college will be paid for.

Welcome to Holland by Emily Perl Kingsley

I absolutely love this piece written by Emily Perl Kingsley. I hope you enjoy it too.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Severaly hours later, the plane land. The stewardess comes in a says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy! All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for awhile and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrants.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was suppposed to go. That's what I had planned."

And the pain for that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.

But...if you spend your life mourning the fact that your didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

There's good stuff too...

As with all things in life, sometimes you realize that you've been in a little bit of a negative mind frame, and you need to change things up a little bit.

I would like to say, for the record, that although William comes with a unique set of very large challenges, the kid is absolutely, unequivocally, without a doubt, hilarious. The gift of humor and entertainment is all about timing and delivery, and this kid is the master of both.

Cases in point:
- In the middle of a meltdown, (again, his, not mine) I asked William if he wanted some cranberry chicken that Nickie had made. He abruptly stopped crying, looked up and said through teary eyes, "delicious berries."
- William just completed potty training, which means that any time I go to the bathroom, I have an audience, exclaiming "Good job, Daddy!"
- He loves to sing happy birthday, and blow out candles. So much so that over the course of an evening, we will light one of those glass jars with a candle in it about 50 times, sing happy birthday, all the kids will clap, and William will blow out the candle and yell "CAKE!" Note: it is not wise to attempt to blow out the candle in order to help him. He will attempt to reciprocate by pushing your head down into the Yankee candle jar until your nose hair burns up.
-He's naked 85% of the time. This is cute when he's running around in the backyard. A little less cute out in the front yard, and not so cute when he's at the top of the climbing structure at House of Bounce.

He doesn't have the same blueprint as the rest of us, but at the end of the day, he's a happy kid, he's a loving kid, and he's certainly loved back. At the end of the day, that's all any of us needs, isn't it?

So What's It Like, Anyway?

I can't tell you how many times someone has asked me, "What's William like? How does having Autism affect him?"

I welcome the question. The problem is that it's hard to answer.

Many people will spend an hour or so with William, or even an afternoon, and say that they never would have guessed he has Autism. If he's around other children at the park, when the kids are in Thunderdome mode, running, screaming, smashing things, killing and eating the young and the weak, it's hard to tell he's any different.

The best way to outline how he's different would be to describe the hours before getting to the park and the hours after.

The morning starts with William slamming a door in the basement. Over, and over, and over again. This takes place at 5am, and it's still dark. (Man, I can't wait for this kid to be a lazy teenager and sleep until 1 in the afternoon.) Once he's woken up the entire house, it's time to give him a huge dose of probiotics with his breakfast, which is wheat free, dairy free, egg free, and generally taste free. Which he doesn't like, and typically won't eat, cause it tastes like crap. (Did I mention his food costs twice as much as 'normal' food?)

Breakfast is usually followed by an hour of running around naked, culminating in running out in the street. (By William. I tried once, and the neighbors called the cops.)

Trying to stop this behavior is not impossible, but it takes a great deal of patience and skill. If you try to 'lay down the law' or tell him to STOP IT, he will burst into tears, scream, or violently smash his head into the closest thing. Doesn't matter if it's a pillow, wood, or concrete.

Going to the park, you have to strap William in a car seat for babies, cause otherwise he jumps up and down to the rhythm of the car, and turns on every overhead light. Then he screams when you ask him to stop.

After the park, he has a meltdown in the car again, and cries until you figure out that he's thirsty. The kid is 4, and he can't tell me "I'm thirsty."

After a bath, and meltdown about getting out of the tub, he'll hug you and squeeze you around your neck until you think your eyeballs are going to burst. He puts his hands on your cheeks and kisses you on the lips and smiles. And says nothing.

You can't ask William "what's so funny", or "what's wrong." He doesn't know. And even if he did, he couldn't tell you. He can't string together a sentence to have a conversation. If you ask him if he likes the song on the radio, he says "song on the radio." Some things it seems like he's put together a sentence. "Daddy, want take a bath" This is not conversation - this is William using chunked together phrases to get a desired response. Think of a traffic sign. It doesn't have a lot of words on it, but it gets the point across.

William has never told me how his day was. Or what he liked about riding on Uncle Dave's boat. Or why he likes riding in Grandma's car. Nickie and I can only read his face to see the joy or frustration that is coursing through William's brain. There are thoughts and red hot emotions in there, we can tell, but somehow his brain doesn't let him verbalize it.

It would be impossible in a single post, or in ten posts, to lay out a definitive account of who William "is." That's why I started the blog. I'll keep trying. So will he.

What Can You Do?

Okay, it's time....here's where we ask for your help.

In a perfect world, I would make enough money so that Nickie could stay home with the kids, and also hire a full time nanny so that we could double his therapy, and she could make it to all of the sessions we need.

If you had a sick kid, you know there's nothing you wouldn't do to get him or her what they need. You'd drive to Walgreens at 3am. You'd catch vomit in your hands. (That one was not my favorite - I am going to bring that up at someone's wedding in 20 years.) You'd walk in front of a bus if you thought it would do any good.

So, maybe this little thing can help - On the main page of our blog, there's a Donate button. You can help us pay for the therapy this kid needs. If you've got a minute, throw a buck in.

Also, let me know what you think. If you think this is a great idea, let me know. If you think it's stupid, why should you donate to William Fowler when you can donate to the Sierra Club, let me know. If you would like to tell me something a little more colorful on what I can do with the donate button, let me know.

Your choice.