The grassroots effort of Amendment 51 did not pass yesterday...I am truly saddened by this. I wonder where we go next.
My perspective as a parent fighting for the rights of my child is not unique...I want what is reasonable and is necessary. When your child has special needs, sending him to school and signing him up for baseball just isn't enough. The need for training in socialization, unique nutritional requirements, significant medical attention, directing dangerous behavior, regulating infantile reflexes which prohibit physical development, facilitating an avenue toward receptive and expressive language...are just a few vital needs of these children. The reality of "necessary and reasonable" daily needs, stretches far beyond what most people consider an exhausting, and financially troubling day.
That's where my frustration with the defeat of 51 comes in. You do anything you can for your baby. Interestingly, Colorado offers phenomenal services...but the costs are astronomical. The wait to receive support through a Medicaid Waiver can take years and years...meanwhile these children either miss their "window of opportunity" or the families deplete their life savings paying thousands of dollars each month for therapy, or the family moves to a state which financially supports their child's special needs. Colorado is currently #48th in the nation for funding those with special needs.
I don't know if voters didn't understand the wording, didn't care, or were so blinded by headline news leaving this issue insignificant on their list of priorities. Perhaps they didn't realize the tax-increase of pennies on the dollar, would not pertain to gas or groceries or their electric bill...but rather on luxury purchases that a truly financially strapped family would not be participating in, anyway...like dining out and purchasing a new sweater at the mall.
Here are two letters on the subject I especially liked: http://blogs.denverpost.com/eletters/2008/11/06/amendment-51-defeated-2-letters/
Well, here again, the lesson I've learned is that I cannot control much...if anything. I can do my part: I can be thankful for our amazing therapists, I can cherish our dear friends and family who have stood by us through our financial and emotional crisis, I can appreciate the humility of asking for and then receiving help, I can continue to pray for guidance, I can keep talking about this issue.
We are blessed, we are truly blessed. I only wish more families could be cared for as we have been.
"Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Therefore, as we have opportunity, let us do good to all people, especially to those who belong to the family of believers." Galatians 6:9-10
Wednesday, November 5, 2008
Saturday, October 11, 2008
Finding Color In a Black and White World
Many people have asked what this means, exactly: Finding Color in a Black and White World. Well, here are my thoughts:
The mind of a person with autism might appear to be black and white at first glance. Our intention, however, is to provide the opportunity for William to successfully navigate through "our" world, with the ultimate hope that he can invite us into the utterly amazing and truly colorful world in which HE lives.
My perspective has changed quite a bit over the past couple of years. I wanted so desperately to change the situation. I had to deal with the raw feelings I was having: despair, grief, guilt, hopelessness, and anger...not to mention exhaustion. A person can find those same emotions with the loss or illness of a loved one. In my world, this is exactly what we were dealing with: the loss of who I imagined William Theodore Fowler to someday be, and the illness of his diagnosis: AUTISM, which needed to be "cured".
Oh how that has changed! I'm still exhausted, but I'm VERY SLOWLY beginning to see all that God has given us in this precious boy. He has changed my heart forever. He has shown me that love is so much more than I understood it to be. I have kicked holes in walls, cried my eyes out, written letters of "concern" to an obsessive count, and even attempted William's headbanging techniques...all to no avail. To some of you this is no surprise...but do you know what is working? PRAYER. God is answering my prayers. I have been praying for MY HEART TO CHANGE.
No, William is not "cured". But do we really want him to be "cured", per say? What is so "wrong" with him, anyway? He's a quirky little dude with really funny language, and an obsession toward nudity. He certainly has difficulty with loud noise, pretend play, conversations, balance, getting lost, well...yes, there are loads of "issues". But, he sure does love me! And wow, I do love that kid!
He has successfully stolen my heart, and let me tell you, I SEE COLOR...in this Black and White World:-)
Tuesday, September 16, 2008
Win-Win
I am constantly amazed by the support we receive from friends and family when it comes to all of our kids.
Our newest partnership is with our friend and neighbor Sherri. She and her business partner Jess have a company called Just Java. (http://justjava-too.org) We got a basket of their coffee after the fundraiser for William, and I loved it. I was a complete Starbucks snob prior to drinking this coffee.
Just Java has added William as one of their Member Organizations, which means that for every bag of coffee people buy, they donate a portion of the sale to William's Foundation. We can then use this money for the myriad of things we need for William, whether it's probitotics, or therapy. (or deadbolts that are keyed on both sides - I can't keep that kid in the house.)
So, if you're a coffee drinker, go check out Just Java. Get yourself some coffee, get some for your office, for your neighbor, whatever. When you're drinking your next cup of coffee, think about a half naked William riding a big wheel down the street at 6 in the morning. Then think about his dad, sprinting after him in his jammies.
Our newest partnership is with our friend and neighbor Sherri. She and her business partner Jess have a company called Just Java. (http://justjava-too.org) We got a basket of their coffee after the fundraiser for William, and I loved it. I was a complete Starbucks snob prior to drinking this coffee.
Just Java has added William as one of their Member Organizations, which means that for every bag of coffee people buy, they donate a portion of the sale to William's Foundation. We can then use this money for the myriad of things we need for William, whether it's probitotics, or therapy. (or deadbolts that are keyed on both sides - I can't keep that kid in the house.)
So, if you're a coffee drinker, go check out Just Java. Get yourself some coffee, get some for your office, for your neighbor, whatever. When you're drinking your next cup of coffee, think about a half naked William riding a big wheel down the street at 6 in the morning. Then think about his dad, sprinting after him in his jammies.
Sunday, August 31, 2008
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.
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.
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.
Thursday, August 14, 2008
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.
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.
Monday, July 28, 2008
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.
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.
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