Life with William

A Little Overdue

noreply@blogger.com (John) — Tue, 06 Apr 2010 16:23:00 +0000

It's been quite a while since my last post, and for good reason. I have been trying to keep my posts positive, but the frustration level has prevented that, and lately it seems to be approaching an all time high.

We've recently decided that the school that William is attending is doing such a poor job of working with him that we need to pull him out. Nickie has been by the school, and caught them red-handed (multiple times) leaving William alone in the classroom, just playing with a pencil sharpener while the rest of the class is working on some other task. He is supposed to have a full time para-professional, but she is overwhelmed by her case-load, and can't be with him most of the time. So, William's teacher adopted a strategy where as long as he is not disrupting the class, she pretty much ignores him. If he gets out of line, they haul him off to the special needs room, where he hangs out and plays. So, my tax dollars are essentially going to a very expensive baby-sitting program. I understand that everyone is severely restricted in their capacity, but we keep getting told, "well, this is an extraordinary week." Problem is, it seems like every week is an extraordinary week.

We looked at transferring within the district. The only problem is that with all the budget cuts (with more to come) all the schools in Douglas County are deficient in the Special Needs area and we wouldn't be better off transferring to another school in the district.
We looked at private schools. I would need to get a second job, and so would Nickie. Not gonna happen.

Nickie set off on the task of finding public schools in the Denver Metro that have what we need. Smaller teacher-student ratio, appropriate programs for William with the right amount of supervision, and a good fit for all the other kids.

After lots of interviews at schools, we've settled on Willow Creek, in Centennial. About 2 miles north of where we live now. Small wrinkle - we have to live in the school's home area in order to get services for William. So, the house went on the market.

Now I am sitting in an immaculately clean house and hating every minute of it. The kids, of course, have no appreciation or understanding for keeping the house clean. I feel like the guy with the shovel behind the horses in the parade. Money is flying out the door with all the "touch-ups" we're doing to get the house show-worthy, and the weather just can't seem to cooperate. 3 blizzards since we started the process of trying to go on the market. And then there's that pesky housing market. I think I have a better chance of growing another appendage than getting this place sold for what I need.

On top of all that, William just turned 6, so his Medicaid funding has been taken away. Don't even get me started on that....but I will. The government has a pool of money for kids with Autism, but it's ridiculously small, so they put you on a wait list, and you are only eligible until you're 6 years old. (I won't call this rationing, because that would be spreading fear and hate.)
I can put his treatment on my taxes, but that simply means I get about 20 cents on the dollar back, and only after I submit it with my taxes. We've spent about $75,000 in the last couple of years, and I have gotten about $15K back in tax refunds.

Maybe it's the cloudy weather, maybe it's the damn dogs barking in the neighbor's backyard, maybe it's the fact that we've accidentally been drinking decaf for the last week, but I needed to vent. I get so tired of being angry about all this, I really don't want to move, but what else can we do? I catch myself getting angry at the kids, angry at work, angry at the government, but whose fault is all of this? No one's, really. I thank God for Nickie, she has taken an incredible burden on with all of this, coordinating all the house stuff, the school stuff, the kid's stuff. She's the only one I am not angry with, I guess. (But she better be careful, cause it's not really an exclusive club. Haha, just kidding, dear)

Anyway, I hope and pray that my next post is a good one. I hope I can say we sold this house. I hope I can say we found the perfect house to move into. I hope I can say that William and all the kids are doing better. I hope I can say I am not so disgusted with myself for having such a bad attitude. I hope Nebraska wins the Big 12. One can dream, right?

Heeeeere's Johnny

noreply@blogger.com (John) — Wed, 24 Jun 2009 15:48:00 +0000

A couple of things have gotten me thinking about our situation the last couple of days: Barack Obama and Ed McMahon.

First, the heavy stuff. President Obama's plan for health care, while noble, scares me to death. I will be the first to admit that the hurdles we have faced in dealing with William's therapy have been mind-numbingly difficult. The bureacracy and slow response at even the county level of government is truly a wonder to behold. But, on the flip side of that, Nickie and I are the ones making the decisions about what therapies to pursue. (Well, mostly Nickie, but we'll get to that in a bit.)
Everything I have read indicates that in a single payer system, the first thing to get cut back on is physical therapy. Think about this - if coverage for therapy for an 35 year old recovering from knee surgery is extremely low, what chance does an otherwise physically healthy young boy have of getting much needed (in the eyes of his parents) physical, occupational, music, hippo, water, and behavioral therapies? Sounds pretty gloomy to me. I am sure we'd probably be able to still get it, but the government won't be paying for it, even though my taxes will go up in some shape or fashion to support universal healthcare.

Don't get me wrong. I love the idea of a system where we show up with William, have his needs met, it's covered, we sign in, and everything's grand. But I am also a realist. It took Nickie months to get the paperwork lined up for the medicaid waiver William is currently on. Multiple phone calls a day, lots of tears (by both of us), stress, and anger. I am not optimistic about a new system run by Washington. My preference would be to let me keep my money and decide what to do with it.

Which brings me to the second inspiration for this entry. Ed McMahon just passed away, and I was thinking about how he was famous for pretty much doing nothing. He was a good guy, did was he was told, supportive of his front man, and didn't cause any trouble. That got me thinking...

Hey, I am Ed McMahon. (How's that for a Nike commercial?)

Nickie has been a rock-star super-hero in getting William the things he needs. (in addition to all the other kids) Between therapists, doctors, diets, probiotics, supplements, casein free/gluten free food, camps, money, Douglas County, and the State of Colorado, she has feverishly worked her tail end off to get it all done. What do I do? Help. Drop people off somewhere, pick them up somewhere, fax something, mail something, make dinner, and give her a hug sometimes and tell her there's nothing more she can possibly do today.

I am Ed to Nickie's Johnny Carson. (Although I doubt Ed and Johnny hugged much.)

"You can't imagine hooking up with a guy like Carson," McMahon said in an interview in 1993. "There's the old phrase, hook your wagon to a star. I hitched my wagon to a great star."

Couldn't have said it better myself.

Summer Blessings

noreply@blogger.com (nickiefowler) — Fri, 19 Jun 2009 03:19:00 +0000

Two posts in one week! Miracles do happen;-)

My last entry explained the anti-yeast treatment William was on. His eczema had finally disappeared, so we were given the go-ahead in discontinuing Diflucan. Fortunately, or unfortunately, during that week, his eczema returned. I can now see that this was a blessing, because it unveiled several issues...

Shortly after restarting Diflucan, William's hair began falling out. We upped his topical Glutathione (for liver support), added NAC (which helps the body naturally produce Glutathione), added Mucan (a homeopathic anti-yeast remedy) to his chlorella & biocidin anti-yeast regimen. We continuted the supportive supplements, enzymes and probiotics he's been on for the past couple of years.

Fairly simple. But at the same time, his IGG food panel results showed new reactions to almonds and white rice. So now off casein, gluten, almonds, peanuts, soy, vinegar...and SUGAR (obviously a major player in the candida/yeast overgrowth/eczema recurrence), a couple of things became clear: A) we were not "rotating" foods like we were supposed to, and B) we were not keeping his sugar intake below 10 grams per day.

This was when I panicked: 2 years of intensive biomedical treatments, dietary restrictions, therapy, major bills...we hadn't done enough...NO PROGRESS????

*DEEP BREATH*...We could do this. All the work up to this point showed us we were totally capable of handling this new knowledge as well as this truth: William's body needed us to dig in a bit deeper.

So, 2 months later...he is now eczema-free! Did you know a half cup of organic grade B maple syrup has 36 grams of sugar! John puts fresh squeezed lemons in pancakes now, so we can avoid the syrup issue...we use Birch Tree Xylotol for sweetener, and only 1 piece of fruit per day. Anyway, we are very happy about this victory, however the food issue remains.

So, my latest plan is a visit to a group called, "Inspired". They perform a hybrid kinesiology/NAET program which literally clears allergens in 95% of cases. Dr Devi Nambudripad's book, "Say Good-bye to Illness" tells the story. I'm anxious to see how this works for William. We're not looking for the infamous "cure"...but we do seek to uncover William's best possible health.

We are increasing Will's cranial sacral therapy, Relationship Development Intervention, taking an r&r trip for ourselves (J & I) to France, and then sending the little man off to Kindergarten August 5th! He has qualified for a full time paraprofessional...who happens to be the head special ed teacher at Fox Creek Elementary. We are extremely grateful for this blessing. Not only will he be in good hands at all times, but the special bus will come to our front door for pickup and drop off, and William's friend down the street will be in his classroom...instructed by a magnificent teacher. His big brother will be just down the hall in 2nd grade...that's another preparatory we'll be working on...but hopefully a source of comfort for both boys.

As the summer moves on, we hope to reconnect with William's favorite swim teacher, Russ, who has moved on from Safe Splash; we hope to find plenty of hours playing ball with Zoey; we hope for some time on the Rowe farm hanging out with the sheep, lama, cats, and riding horses; we look forward to the Oberhauser family welcoming Will and his sibs to their farm-life for 10 days. We hope for healing and silly behaviour, and good times spent with friends....and all the blessings that come with summer.

Nickie

No Matchsticks Today

noreply@blogger.com (John) — Fri, 12 Jun 2009 03:04:00 +0000

Some notes on Summer so far...

William is doing very well these days. He is devouring, for lack of a better term, everything we are throwing at him. He's going to day camp (3 of the kids are), going to therapy constantly, riding a bike (with training wheels), and is constantly on the move. He even liked going to Sophie's gymnastics class so much that we considered signing him up. (Until we saw the price tag. Apparently gymnastics instructors are paid on the NFL pay scale) So, every day William wakes up and says "Nope, no matchsticks today." (No gymnastics today)

Most importantly, an important relationship is blooming in William's life. Our neighbors Shannon and Matz have a dog, Zoe, that has boundless energy equivalent to William's. We have spent many days and evenings watching the kids ride bikes, and watching William and Zoe play together, throwing the ball. Neither one of them seem to get tired of it. It is truly thrilling to watch. (Off topic, but in regard to previous posts about how William is always naked outside, Matz has pointed out that you can add "a naked Fowler kid" to death and taxes.)

I updated the video on Youtube today to allow for comments, I am not sure why I didn't allow it before, probably because every video I have ever watched on Youtube has the comments section degrade into some sort of nastiness completely unrelated to what the video was about. But, I am newly inspired to get more people exposed to Autism, and this is just a small step to get it done.

A couple of people have asked if we're going to be doing a fundraiser again this year. We talked about it, and decided against it, since almost everybody's hurting this year and it just didn't seem appropriate. We talked about writing up some sort of formal newsletter also, but that also doesn't seem to be materializing. Fortunately, the wonders of email, Facebook, and blogging are allowing us to keep people informed on what's going on.

There's still lots of tough days. We were at Evan's baseball game last weekend, and William was able to watch about 5 minutes here and there, but for the most part, he was more interested in going and looking for other things to do. I was coaching first base, and I couldn't help but wonder, will this kid ever be able to play any organized sports?
We still have a real bad time leaving anything that William is enjoying. If we leave a park before he is good and ready, (which is never) he has a meltdown of biblical proportions. His screaming makes dogs run for cover, and other parents look over and you can tell they are wondering if they should call 911.

William's diet is a major pain in the rear. Literally. In addition to all the foods he can't eat, we have to give him Vitamin B-12 injections in his butt every three days. He drops his pants like a trooper, and the pained, hurt look on his face after he gets his shot breaks my heart every time.
Then he'll lead you over to the counter, say "all done with that for today", and I wonder who is tougher in this equation.

Since the last post, there have been several nights when I was inspired to write about how a) wonderful everything is going, and b) crappy everything is going. But I've just been tired. I guess in the grand scheme of things that evens out and we're doing okay. You just keep going, get through it a week at a time, and the next thing you know it's time to go for Matchsticks.

New Video

noreply@blogger.com (John) — Tue, 03 Feb 2009 15:56:00 +0000

It only took me 9 months to get it done, but I finally got a video done of a portion of the presentation I made for William's fundraiser last summer.

Hope you like...

http://www.youtube.com/watch?v=Y45rIHxwqwQ

If you can, watch it with the High Quality setting turned on, and turn up your volume a little bit.

Thanks,
John

noreply@blogger.com (nickiefowler) — Thu, 29 Jan 2009 03:27:00 +0000

It's nearly February now, and I see John and I have been...well, "heads down" in life? I have to wonder if this is a good thing since "coming up for air", ie: blogging, in our case, is not as necessary when the air is plentiful. With that said, things are pretty good! But it wasn't the case for much of December and January.

We were somewhat satus quo early December when I visited the DAN! doc in Boulder. She was concerned the nystatin William had been on prior to the appointment, was ineffective. She proceeded to prescribe diflucan. This is a heavy-duty blood yeast detox. It's a bear trying to hide medicine (that tastes like medicine) in Will's food. Especially because his food is void of casein, vinegar, sugar, gluten, soy, and peanuts...basically he eats fresh fruits, veggies and organic meat. Where do you hide nasty tasting meds? Sadly, I've ruined his love for apple sauce..so I have to be very careful! Anyway, I did manage to hide crushed diflucan, as well as the charcoal which helps rid his body of dead yeast, in fig jam. Who knew?! As a result of a process known as Herxheimer reaction, he went into a behavioral tailspin. Therapists, teachers, and our entire family felt he'd fallen into a massive regression...more than a year's worth. So we all prayed. And prayed. And I called the doc "just" a couple of times- absolutely panicking! Affirmed we were on the right track, we prayed some more.

FINALLY, the little guy has begun showing us behaviors he's never possessed! This is just in the past week or so. It's a new delight for us, and so comes the purpose of this post. It's a celebration for trudging on. Moving forward when it appears that you're quite possibly moving backwards.

I actually pulled William off his special diet for a few weeks in the fall. It is absolutely exhausting for anyone trying to keep it up. God bless the families who battle Celiacs and the myriad of allergies that can piggyback the disease. Thankfully, a little nudge from my husband and my mom, and a lot of energy for our Lord, we jumped back on the right track. And, thankfully I kept the appointment to see the DAN! doctor. And thankfully we continued with William's medicine even through the crazy behavior and difficult reports from teachers and therapists. And thankfully God does not leave us. Thankfully He watches over William every minute of his little life.

Well, here's my cheers to all: To moving forward through difficult times; that in the end, if we keep our faith, all will be as it was intended; that we will be better for having lived the experience.

And so I find myself wondering if blogging is a "coming up for air" pass-time? I think John had it right all along...this blog is a celebratory moment of peace amidst continuous chaos. That which we call "Life with William". In all fairness, I'll need to add: et al." ;-)

In it to Win it

noreply@blogger.com (John) — Wed, 12 Nov 2008 23:42:00 +0000

Nickie is starting to catch up with me on posts, so I figured I better get going. In case you hadn't noticed, Nickie has been the author of several posts. We are both spiritual people, but she, as with all her emotions, wears her faith on her sleeve. I very much admire that quality about her. I am a little more guarded about those things. No particular reason, that's just a personal trait, just like my tendency to use humor in all situations, and generally to think that all things in the world revolve around my thoughts or actions. Think of all the good jokes you have heard lately. I made those up. All the new trendy things out there? That's me. The Bud Light "Whassssup!?" commercial? My idea. (Barack Obama? I was taking that day off.)

But I digress. Regarding spirituality, I do believe very strongly that William was a blessing from God. I have often questioned why we had so many kids so fast, and why each time was such an ordeal. (Each pregnancy was extremely difficult...another story) I think God was preparing us for the hard times ahead, and giving us our own support network in the form of siblings. I don't know if William will go to college, or have a job, or ever get married, but I do know that he will always have parents and 3 siblings who love him dearly.

So, if you're reading a post, and it is generally very introspective, and uplifting, odds are that Nickie wrote it. If it involves crude humor, nudity, or stories about me, then guess who?

I did some reading back through some old posts, and I am realizing that I have gotten away from what the intent of this blog was. Me. Okay, so I am kidding....but only partially. My point is that there are a bunch of web sites out there talking about what to do for William, what therapy he needs, what diet he needs, but nothing talking about what Nickie or I need. Suffice it to say, we have been going on a wing and a prayer, flying by the seat of our pants for the last 3 years. Surprisingly, there is no manual for how to deal with kid once you catch up to him down the street riding his big wheel naked. Not a snippet on how to deal with the looks you get when you are dragging a naked screaming kid and his big wheel down the street, muttering some words you shouldn't say in front of any kids.

On a related note, William got in the habit of shouting out the "F" word every time we walked by the baby section in Target. I said it ONE TIME at that EXACT SPOT, and for the next year, he shouted it out as loud has he could every time we passed by. Not a quick shout either....he shouted with passion, verve, and intensity that would make any Broadway actor proud. "FFFFFFFFFFFUCK!" Over and over and over again. This would mean I would have to sprint past all the moms with the darling little children just there to peacefully buy some diapers or a binky. This also happened in the post office, waiting in the Christmas line to mail a package. The postmaster's response was "I bet Grandma is real proud."

Okay, a little tangent there...

The latest is that there are lots of subtle little changes still happening. William is doing puzzles (for 3 year olds), and insisting on "doing it all together", meaning he wants me to play too. I enjoy this immensely, because I am feverishly praised by William when I put pieces together. (I get the same praise when I go to the bathroom. I have no memory of my own potty training, but I suspect this is what it's like. "Good Job, Daddy!" My self-esteem is at an all time high.)

So, things are good. Lots of work to do still, we are running 100 different directions at all times, but it's crazy what you get used to.

I also want to thank everyone who has sent notes of encouragement and support since we started this whole operation. We truly love and appreciate you all. You know who you are. (I won't mention any names, because, after all...it's all about me.) In all honesty, the encouragement and positive feedback sustains us more than anything else. I got an exceptionally nice note from a friend from Junior High today and I think it will last me a month.

Amendment 51

noreply@blogger.com (nickiefowler) — Thu, 06 Nov 2008 03:34:00 +0000

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

Finding Color In a Black and White World

noreply@blogger.com (nickiefowler) — Sun, 12 Oct 2008 03:17:00 +0000

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:-)

Win-Win

noreply@blogger.com (John) — Tue, 16 Sep 2008 13:14:00 +0000

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.

A Team Player!

noreply@blogger.com (John) — Sun, 31 Aug 2008 22:41:00 +0000

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?

noreply@blogger.com (John) — Sun, 31 Aug 2008 22:25:00 +0000

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

noreply@blogger.com (nickiefowler) — Fri, 15 Aug 2008 02:44:00 +0000

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

noreply@blogger.com (nickiefowler) — Tue, 29 Jul 2008 05:23:00 +0000

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...

noreply@blogger.com (John) — Tue, 29 Jul 2008 02:40:00 +0000

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?

noreply@blogger.com (John) — Wed, 23 Jul 2008 03:45:00 +0000

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?

noreply@blogger.com (John) — Wed, 23 Jul 2008 03:18:00 +0000

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.

Part of the Public Consciousness?

noreply@blogger.com (John) — Wed, 23 Jul 2008 02:45:00 +0000

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.

Therapy Update

noreply@blogger.com (nickiefowler) — Fri, 18 Jul 2008 17:42:00 +0000

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:-)

A New Journey

noreply@blogger.com (John) — Wed, 16 Jul 2008 04:51:00 +0000

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