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.
Monday, July 28, 2008
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?
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?
Tuesday, July 22, 2008
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.
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.
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.
Part of the Public Consciousness?
They say the opposite of love is not hate, it's indifference. So, I guess the opposite of support from soceity would be public indifference. I can't speak for all parents of kids with Autism, but personally I am sick of feeling ignored. When is someone going to create a colored wrist band for people to wear to increase Autism awareness? When is Donald Trump going to have a challenge on The Apprentice where all proceeds go to Autism Speaks?
We get a back story news article here and there. And a crappy book from a has-been playboy playmate.
But wait, now we've got comments from Michael Savage on his radio show where he says Autistic kids are just brats. The handful of people who actually paid attention to his comments want him fired. I say just the opposite. Frankly, I am thrilled that it's making news. Maybe in 10 more years, after I have spent about a million bucks on ABA therapy, maybe then the news will be putting Autism as the leadoff story on the 10 o'clock news. Let Michael Savage shout it from the rooftops that we're all crazy charlatans, with over-medicated, bratty kids. Let's start a good heated argument on the subject! Isn't that what we Americans like? A nice Jerry Springer style brawl? Let's argue about Autism, cause right now all I hear is crickets from NBC, CBS, and ABC. What side does Barbara Walters come down on in all of this? Maybe we could get Tom Cruise to weigh in. (I mean, come on....his medical prowess has already been heralded.)
I am sick to death of all this stuff being no one's problem, and reported on right after the big story on the Grady Squash Festival. The state doesn't want it, insurance doesn't want it, which leaves the parents, if they can manage to stay married, to try and figure out how to come up with about $50,000 a year on their own.
We've been lucky. We've been blessed with family who has helped, and friends who have helped us throw a benefit to raise money for William. (MUCH more on that in a later post.) But what about the people who don't have the money, don't have family with money, and maybe live somewhere with no connections and no way out?
Let's get talking about it. We all know about Cancer, AIDS, Parkinson's, Irritable Bowel Syndrome, and Erectile Dysfunction. Can we please talk about the hundreds of thousands of kids who are trapped among us?
So, to Michael Savage, I say this: Screw you. And thank you.
We get a back story news article here and there. And a crappy book from a has-been playboy playmate.
But wait, now we've got comments from Michael Savage on his radio show where he says Autistic kids are just brats. The handful of people who actually paid attention to his comments want him fired. I say just the opposite. Frankly, I am thrilled that it's making news. Maybe in 10 more years, after I have spent about a million bucks on ABA therapy, maybe then the news will be putting Autism as the leadoff story on the 10 o'clock news. Let Michael Savage shout it from the rooftops that we're all crazy charlatans, with over-medicated, bratty kids. Let's start a good heated argument on the subject! Isn't that what we Americans like? A nice Jerry Springer style brawl? Let's argue about Autism, cause right now all I hear is crickets from NBC, CBS, and ABC. What side does Barbara Walters come down on in all of this? Maybe we could get Tom Cruise to weigh in. (I mean, come on....his medical prowess has already been heralded.)
I am sick to death of all this stuff being no one's problem, and reported on right after the big story on the Grady Squash Festival. The state doesn't want it, insurance doesn't want it, which leaves the parents, if they can manage to stay married, to try and figure out how to come up with about $50,000 a year on their own.
We've been lucky. We've been blessed with family who has helped, and friends who have helped us throw a benefit to raise money for William. (MUCH more on that in a later post.) But what about the people who don't have the money, don't have family with money, and maybe live somewhere with no connections and no way out?
Let's get talking about it. We all know about Cancer, AIDS, Parkinson's, Irritable Bowel Syndrome, and Erectile Dysfunction. Can we please talk about the hundreds of thousands of kids who are trapped among us?
So, to Michael Savage, I say this: Screw you. And thank you.
Friday, July 18, 2008
Therapy Update
This morning, the ABA Therapists met to discuss William's progress. We discussed his ability to recite the months of the year, seasons, write his name, complete puzzles, and other academic work. However, he still struggles when it comes to responding to his name, riding a bike, staying safe in a parking lot, asking for what he needs...these seemingly basic skills many 2 year-olds accomplish. Still, we remain hopeful that his academic skills excel, as he learns how to socially "fit in". He has mastered potty training over past few weeks, so anything is possible!!
The most exciting news came from William's DAN! doctor on Tuesday. The bacterial infection in his intestines, called Cdiff, has completely healed after 10 months of great quantities of probiotics, excellent dietary changes, additional nutritional supplements, and extreme tenacity. William is getting so healthy, that his hair is now growing in quite thick and his eczema is completely gone.
I am truly amazed at what can be accomplished when we stopped spending all of our energies focused on the "worry" toward symptoms. When our energy and prayers began focusing on William, from his perspective of internal health, sensory interpretation, and mental connections, we were able to truly start helping him.
I'm convinced life is much more palatable for all of us when we walk a day in someone else's shoes. That's hard to do, especially when that person is autistic and has a COMPLETELY different perspective...but I am learning quite a lot from this little guy, who enjoys life on a whole different level! I'm trying, anyway:-)
The most exciting news came from William's DAN! doctor on Tuesday. The bacterial infection in his intestines, called Cdiff, has completely healed after 10 months of great quantities of probiotics, excellent dietary changes, additional nutritional supplements, and extreme tenacity. William is getting so healthy, that his hair is now growing in quite thick and his eczema is completely gone.
I am truly amazed at what can be accomplished when we stopped spending all of our energies focused on the "worry" toward symptoms. When our energy and prayers began focusing on William, from his perspective of internal health, sensory interpretation, and mental connections, we were able to truly start helping him.
I'm convinced life is much more palatable for all of us when we walk a day in someone else's shoes. That's hard to do, especially when that person is autistic and has a COMPLETELY different perspective...but I am learning quite a lot from this little guy, who enjoys life on a whole different level! I'm trying, anyway:-)
Tuesday, July 15, 2008
A New Journey
Welcome to my new blog about William Fowler. William is my 4 year old son, the 2nd oldest of 4 children. When he was officially diagnosed with Autism a little over a year ago, I knew he had a long road ahead of him. What I didn't realize is how much of a journey it would be for me.
This new foray into Blogging is my attempt to keep people up to date on the highs and the lows of raising a boy with Autism. I will be posting in an effort to let you know about things like:
- Behavior
- Therapy
- Financial Assistance
- Insurance
- Diet
Probably most importantly, I'm going to vent -- Because every one of those topics comes with it's own complete set of complicated issues.
Hopefully you'll be interested, I promise you'll be informed, and it's entirely possible you'll be entertained.
Stay tuned...
John
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