Drip, drip, drip...

It's official, no turning back now.

Last month, I started this blog with the intention of tracking our son's progress with chelation. It's been relatively uneventful as we've completely altered his diet and now have him loaded up with vitamins and minerals as well. Don't get me wrong, it's been a major struggle most days, but I think it's been less painful than we thought it would be.

Today, though, was the turning point. And it's from here on out that we find out whether this is going to help or not. After preparing his body with the diet and biomeds, he got his first IV dose of DMSA today. He did an absolutely amazing job during the procedure and I could not be more proud of him. He climbed right up on the examination table, let us wrap him up, and pretty much let the dr. insert the needle and insert the fluid.

Now, since I'm at work, my wife gets the job of trying to get him to drink 6-8 oz of water every 30 minutes and collecting the next 6 hours worth of urine. Fun!

Once we get the results of the metals (if any) in his urine, we then work out a schedule for the chelation over the next few months.

I got me a virus

It's been a few days since my last post, and I think it's mostly blogging's fault. You see, from the time of my first post I've been absolutely obsessed with finding good blogs to read, reading blogs, and writing in my own. Please understand, I'm probably one of the least obsessive people you will ever meet (even virtually). I can't remember ever being so consumed with something until this.
One result of this unexpected compulsion has been a lack of sleep - way too many late, late nights. I held up all right until last week when school started. Ouch. Late, late nights and the sudden early, early mornings caught up with me and kicked my tail on Thursday. See the rubber band on the balsa-wood airplane - it's all wound up tight, right? Well, that's what happened to my stomach and I'm just now getting over it. Ugh. I guess I need to find a way to find/read/write and still get a little sleep as well.

While I'm at it, I thought I'd share a few of the tools I've found which have helped with the finding and reading. Now if I could just find something to help with the writing!

First, I finally figured out what the buzz was about regarding RSS. I've very quickly found that blogs that don't support RSS/Atom get forgotten about. I'm currently using Sage with Firefox to manage my blogroll and easily see which ones have new posts ready for me to read. When I run across a blog that looks like it's worth a 2nd read, I just click the little orange icon in the address bar and add it to my sage bookmarks. Sometimes, the icon doesn't show up, so I can then use Sage to "discover feeds" on the site for me. On a way-too-regular basis, I click "check feeds" in Sage to see which blogs have new posts. I'd love to say that this tool has saved me a bunch of time, but it really has just allowed me to spend more time reading more blogs.

On the finding side, I really haven't found any decent blog search tools. I've found most of my favorites by clicking through the Autism Bloggers ring. Likewise, I read through the comments and click on the reader's name to check out their blogs. Doing so has led me to many great blogs outside of the autism blog spectrum :)

Lastly, I'm just now playing with del.icio.us so that I can keep (and add to) the various lists on my page in a more synchronized fashion, without having to edit HTML (as often).

OK, this is really the last one. I've found Adrian's notes on blogging to be very useful and easy to put into place.

That's it - I have to go to bed! Really!
Oh no, I just clicked "check feeds". Why did I do that? Maybe I'll just read one more...

220 days till the last day of school

Say it ain't so - school already!?

This seems like the 1st year in a long time in which we start the school year with more hope than concern, more confidence than indecision.

It all started so innocently when our oldest entered Kindergarten. Never a problem, never a worry, nothing but excellent marks and remarks all around. Fortunately, this has held up and she enters 6th grade this year looking forward to a new teacher and new classmates.

Our youngest enters his last year of preschool. I don't know what next year's Kindergarten teacher is going to do with him; I guess we should start preparing her now :) He's the leader, he's stubborn, he's cute, and he's smart. I think he probably already knows everything he's supposed to learn in Kindergarten, but we'll worry about that later in the year.

So, what's the problem?

For Grant, it all started shortly before he was diagnosed, shortly after the regression. For kids younger than 3, they are handled by the county education dept. At the time, he had only been diagnosed with verbal apraxia, and we walked in wide-eyed and clueless. Looking back now, our vision of the situation was like being in the eye of the storm; we did not see all of the problems all around us even though it was right in front of us the whole time. Long story short, we later found out that the county folks knew that Grant was autistic but never mentioned anything to us - never made the slightest mention that we should have him checked for something else, never tried to help him. We lost a full year of early intervention. My only explanation is that sometimes people are just really stupid.

So, Grant started school at 3 in a special day class for autistic kids. We have been so blessed with 2 great teachers and many great paraprofessionals along the way. For periods of time, not so much. Along the way, we learned all about IEPs, sticking up for our child, the world of speech therapy and occupational therapy. School was really, really hard for Grant the 1st 2 years or so, and summer school was worse. But then, he started learning. He started figuring out his role and that learning actually results in a better life for himself. And today, he walked into his class happy as a clam, eager to show up every day, eager to learn. We are so thankful for his current class, and this past summer school season. We are so thankful that he no longer walks into the class screaming and crying.

And, we're thankful to finally begin, again, a school year with more hope than concern.

It's (just) a balancing act

It's my dream to see Grant ride his bike, on his own, and enjoy it. Nobody else, including Grant, shares this fervent dream of mine. Why do I desire this?

1. I want to see my son ride his bike. It's my dream. It's selfish. I admit it. But I'm not backing down.
2. Just behind that reason, I want us to ride bikes as a family. All 5 of us, just riding for the enjoyment of riding. Once again, my dream.
3. In the unselfish dept., I want him to be ready if and when he ever desires to hang around with other kids. His bike will be his pass into the camaraderie.

Grant and I have been working on this for 5 years now. I can't even believe it's been that long. I've been married 15 years. I've been out of high school for 20 years. But nothing seems longer than these 5 years of bike training. Very few things have been more challenging.

At 2 years old, not longer after he changed, we would spend short periods of time just getting him to realize what he was doing. Short periods, because his attention span for this activity was very short indeed. Put your feet on the pedals, put your hands on the handlebars, look ahead. Honestly, it was easily a year before he had that mastered. The bigger issue, and that which continues to be an issue, is his focus. Originally, his focus was anywhere except on what he was doing. Anything - the wind, the flowers, the plane overhead, some sound I can't hear - would distract him from moving his feet and realizing that he was moving forward.

I could write pages and pages about our biking times together, unfortunately that would result in you immediately clicking to another page, and we don't want that!

Around 5 years old, with his training wheels moved all the way up, he seemed to have the balance for two wheels. Clearly, he wouldn't be able to do it by himself yet, but he could begin to learn. He got a big boy bike w/o training wheels, and my dream seemed to be turning into reality. It wasn't too long before he figured out the balance and knew that as long as I was holding the bike he didn't have to be scared.

At 6, he really hit his stride. He didn't mind me letting go of the bike and he was able to ride for 30-40 yards all by himself. The joy! And not just me, he was really starting to enjoy riding his bike (no, really!). But alas, that was our peak, and we haven't been close to it since. It lasted for a couple of months, and now he won't ride by himself any longer. He doesn't pedal consistently enough to keep the bike safely upright on his own. Something about me letting go just freaks him out, and he won't stand for it.

So we continue. As much as we can, we get Grant on his bike and he goes, with me walking/running alongside holding on to his bike. I'm convinced that he learns something with each ride. I know that he will ride on his own again. I believe that he will ride unassisted with us as a family, someday. I hope that he will ride with friends, to have fun. I will work with him until it happens.

It's my dream.

A haircut - without screaming?

Will wonders never cease...

Today was haircut day. In most households, that means the boys go to the barber, take turns getting into the big chair, get a lollipop when they are done, Dad pays, and everybody goes home a couple of ounces lighter.

Um, we aren't most households. It's been 4+ years since us boys have been to a barber shop to get our hair cut. I think it was right before Grant's 3rd birthday (insert dreamy memory music here)...

We went over to our local barber, just Dad and Grant (Owen was just a little baby then), to get a nice hair cut before Easter. Grant began crying when he got in the chair, but surely he would be pacified with a lollipop? The nice lady began to cut his hair, ever so gently... The crying becomes screaming. Maybe it would be a good idea for Dad to sit in the chair and have Grant sit on his lap. The nice lady turns on the clippers and takes a couple of swipes on the side of Grant's head. The screaming becomes a full-blown, out-of-control melt down. Dad decides, for the betterment of all within a square mile of the barber shop that we better pay quickly and leave even faster. One problem, Grant's hair is about 20% cut, and it is the day before Easter.

And so begins the story of how Staci learned to cut the boys' hair at home. That's not to say that the experience of cutting Grant's hair had gotten any easier, it was just done in the privacy of our home. Screaming, yelling, running, squirming - haircut day became the most dreaded day in our household.

Over the years, we've learned that Grant's ears were incredibly sensitive. The sound of the clippers, the sound of the scissors, the touch of either - it drove him crazy. But, we also learned more about sensory issues over those years and found that we could concentrate him on other areas of his body to help a little bit. It was still horrible, but we could get through it. Still though, when you are dealing with sharp scissors and Grant is making these sudden movements with his shoulder to cover his ear, or a sudden swing of his hand up to his ear, it's a small miracle that he was never hurt.

But back to today... today was haircut day at our house. And Grant let us cut his hair!! He let the clippers get close to his ears. He let Staci cut the fine hairs over his ears. He didn't squirm. He didn't squeal. And then he was done. And his hair looked good. And it was one of the most amazing experiences of our lives.

Days like today allow us to continue to hope that his many other challenges will also improve over time...

She loves him...

I just happened to run across a post proclaiming today 'Love Thursday'. Well, how can you argue with that? Besides, it gave me a good excuse to rummage through some pictures.

How does this picture portray love, you ask? On the right is my daughter, Cassidy. On the left is Mr. S (for privacy), the director of Missions at our church. Mr. S. is presenting Cassidy with the 1st annual "On a Mission" award, given to one who has stepped out of their comfort zone, out of their day to day life, to make a difference in our world.

A few years back, not long after Grant was diagnosed with autism, Cassidy began to make things. At first, it was 'Dad, let's make something out of wood.' 'Dad, let's make something out of cardboard.' 'Dad, let's make something with this feather, glue, and paper' You get the idea... She also started making bracelets with little kids' beads. Not long after, she said, 'Mom & Dad, I want to sell my things out in the front, like a garage sale. I want to raise money to help Grant'. tears

So, we would put a card table out by the sidewalk and she would set up all of the things she had made. Now, we don't live on a very busy street, so aside from the occasional neighbor or jogger walking by, sales were very small. She was discouraged.

Staci saw that Cassidy had an eye for making these bracelets and offered to take her to the bead store to see what they could find. The rest is history. Once Cassidy figured out that she could get really nice beads (and whatever else goes on jewelry) and people (ladies) would buy them, there was no stopping her. At first, it was the card table out in front. The new jewelry helped, but still not enough foot traffic. Next up, the Christmas-time Dickens' Faire at our church. She bought half of a booth with a good friend of ours and sold her bracelets. Now we're talking! I think she sold about $400 worth of bracelets that first time, Christmas, 2004. Last year, she had her own booth and did a couple of other shows as well. She made around $8-900 last year; with a few other gifts (including the On a Mission award) she gave well over $1000 to Cure Autism Now. This year, her room has turned into a jewelry factory. She now makes necklaces, watches, earrings, you name it. Oh yeah, she's 11.

So, this is my story of love today. Cassidy has spent countless hours making this jewelry, and always with one thing in mind: She loves her brother so much and she will do anything she can to help him and other kids with autism. God bless her.

A gem from Tivo

We've got our Tivo setup to record anything about autism/autistic and while usually this ends up recording a goofy movie or some incredibly boring PBS show, it gave us a real gem this week. The show is named Musical Savants (Discovery Health Channel) and features 2 blind boys with severe learning disabilities who are musical savants.

Their lives have little to do with the autism we experience on a daily basis, but they are absolutely fascinating. One simiilarity I did see was how the younger boy covered his ears when he heard too much or heard unfamiliar sounds, even new music. However, when 'his' music was playing he never had to cover his ears.

Grant (our 7 year old) puts his fingers behind his ears to block out the sounds, or is to change the sounds? Maybe someday we'll find out, but he can't explain it to us yet. Sometimes it's obvious what the noise is, but more often than not, it's some mystery known only to Grant.

Back to the show... it was mesmerizing to watch these boys' abilities at the piano. At one point, they had the older boy working with a small orchestra. Each instrument was playing a part of a different chord (15-20 different notes). The boy was able to hear all of the sounds at once and play them back on the piano. Since he clearly can't play more than 10 notes at once, he played them as an arpeggio.

If you have a chance to catch the show, it's worth your hour (or if you have Tivo, worth your 40 minutes). It's a great glimpse into the incredible complexity of the human mind.

Run like Chicken Little

The whole family came out to watch my softball game tonight, a rarity indeed. It's usually pretty tough to keep the boys occupied during the game, but it's important that they come out and learn how to act in that situation. And as the night ended, the report was actually a good one. For the most part they hung around the stands, and they got to play at the little playground for a couple of innings.

Once, when I was up to bat, Owen was cheering for me nice and loud. Staci told me later that he walked up the bleachers after I got a hit saying 'My daddy is a cool kid'. A bit later, he said 'Daddy runs like 'Chicken Little'! Hmmm, I think maybe he's watched that one a few too many times...

After the game, Grant walked up to me and grabbed my mitt. He put it on his hand, trying to make it look right. I gave him a ball and he put it in the mitt. He was interested for about a minute and then it was gone. It's those types of fleeting moments that can make his silence so maddening. What is going on in there?

One time, it's probably been 2 years ago now..., I was watching a baseball game on TV. If I remember right, it was a pretty big game at the end of the season and I was really trying to watch at least some of it. Grant came over, sat in my lap, and watched 1-2 innings with me. It was almost surreal to have him sit with me and just watch a game. No squealing, no stimming, just hanging out with Dad. Even crazier though, he then took me outside, found a bat and ball, and wanted me to play with him! We played for probably 10 minutes, definitely a record. And that was that...

Another time, probably also 2-3 years ago, he was in the hot tub in the backyard. He starts yelling 'Mommmmmy!', 'Moooommmmmmyyyyy!'. Now, this is a boy who doesn't talk. At that point, he had not said any of our names since he was 2 years old. And, since then, we've never heard anything like that out of him again.

What is it that opens those windows in a child? What is it that closes them back up again?
After watching Treasure Hunters tonight, it's like Grant's mind is a cryptex. Once in a great while, all the dials get opened in the right combination and the secret is revealed for one fantastic fleeting moment. And then it is shut again, with no clue as to the next opening and no clue as to what will be revealed.

The Tiana Foundation

Today, I was fortunate enough to play in a fundraising golf tournament for The Tiana Foundation. It was an absolutely perfect day for golf at Summit Pointe course in Milpitas, CA. I'm really not much of a golfer; I play maybe 4-5 times a year and usually just for special events. The game is just too expensive for me, and I'm no good, but hey that's not what I'm writing about today.

The Tiana Foundation was started by two very good friends of ours after they lost their baby to a heart defect just hours after she (Tiana) was born. The heart defect was not known about prior to the birth, and her death was an incredible shock to all of us. After a painful period of grieving, they found a new calling in helping others who have gone through such a horrible time. Through this foundation, they help parents with counseling and with financial needs such as purchasing grave markers. They are truly inspiring to all of us who know them and we have seen them transformed by this experience.

If you ever find yourself in this situation, or know of somebody whose young child has died, please contact Jason & Rhonda at http://www.tianafund.org/ . Their work is done mostly in California, but they are able to help people throughout the U.S.

Thinking back to that time 4 years ago - wow, what a time. There were four ladies in a very close goup of friends who were pregnant, all due within about 3 months of each other. If I remember right, Tiana was the oldest. The next two, Gabrielle and our youngest, Owen, were born healthy. The 4th, Grace, continues to be an inspiration to all of us as well. About 3-4 months before birth, it became apparent that she had some severe problems and she was not expected to live more than a few hours after birth. One of the diagnosis is Dandy Walker Syndrome, something I had never heard of before that time. Grace's parents are also two of the most incredible people we know. Grace has fought through many early sicknesses, infections, surgeries, etc. but she is living a great life now at 4 years old. She's an amazing little girl and it's so awesome to see her grow and learn as she conquers all expectations.

It was also just over 4 years ago now that Grant was diagnosed with autism, and that deserves a few of its own posts, that's for sure. Within a 1 month period, we sold our first house, bought our current house (it was a stretch, as they say), experienced my employer going bankrupt, learned of Grant's autism diagnosis, and our 3rd child, Owen, was born. When we look back at that period of time, we know that we got through it together and that if times seem bleak now, it doesn't even compare to that time.

Put that gel down!!!

A few thoughts on today's news...

• We spend so much of our days, our lives, focused on our children. With 2 NT children, we could easily spend all of our spare time preparing them for the world, educating them, disciplining, loving. Of course, with one not-so-NT child, we become even more macro-focused - what can we do to get him to say one more word? to get him to realize that all people have names, especially mommy and daddy, and he should address our names when he wants to? to get him to eat on this crazy diet? to get him to take all this crazy medicine? Never mind worrying about whether we are doing the right thing for him. AND THEN THE WORLD SCREAMS - HEY WE ARE FALLING APART! How do we take action on both of these levels? How do we take the time to THINK about what is going on, to do the right thing, and at the same time stay patient while we get our son to sit in his chair?
• I tend to be more on the conservative side, but I like to imagine that I can think for myself. The conservative view of this @#(*)*%^@# terrorist plot is that we need more war, we need to go after all muslims, we need to force our will on the middle east. The "liberal" view (man, I hate these labels 'conservative' and 'liberal') is that we need to talk, to negotiate, to convince them to stop. WHERE IS THE ANSWER? Clearly, it is neither of these views. Regardless of what you think about the war in Iraq, if there's one thing it has taught us (not that we shouldn't have learned from 100 other wars in the past), it's that we can not gain the favor of the people while we are destroying their homeland. Israel is experiencing the same thing as they roll into Lebanon. Plain and simple, this is not going to stop until the muslim population takes on their own, until they SCREAM from the rooftops that this is unacceptable, until they turn over the terrorist groups.
• I learned from Mr. Lorenz in my 8th grade US History that to gain freedom you give up security, to gain security you give up freedom. I've never forgotten this, it's one of the first things I thought about on 9/11 and again today. What is the right reaction to these plots? I completely disagree with our response. We need to stay an open society, with the freedom to travel. It is clearly one of their goals to disrupt our society/culture and change the way we live our lives. It is not acceptable that we give this up. Would it not be more heroic, more free, more founding-fatherish, to not change anything about the way we travel? We must be willing to sacrifice our lives for our way of living, for our freedom. Clearly they are willing to do so, and until we are, we are just going to keep losing our way of life.

And now it's off to bed, so I can get a few hours sleep before we have to work on keeping our kids occupied these last few weeks before school, before we have to work on getting Grant to eat something, before we have to prepare our children for their future...

in stitches

I just found the chelation kid comic recently - today's is hilarious! Even those who are not in agreement with chelation will enjoy this one.


I've also added the strip to the bottom of my blog to share the fun.

babe in blogland

Not only am I new to writing a blog, I must admit I'm also new to reading them. I had poked around a few times but hadn't found anything worth a regular visit. Over the past 2 weeks or so, though, I've been up just about every night well into the wee hours reading the stories of peoples' lives. Here are a few of the better ones I've found - how about you?

http://www.momnos.blogspot.com/
http://www.walkingwithalec.com/
http://www.kristinachew.com/
http://www.ccgrows.blogspot.com/
http://benslifeblog.blogspot.com/
http://griffinblaise.blogspot.com/
http://audra3141.blogsome.com/
http://speakdave.blogspot.com/
http://thehoses.blogspot.com/

http://helives.blogspot.com/
http://eye4redemption.blogspot.com/

I've spent most of the time reading autism-focused blogs; as I mentioned earlier, I've been amazed at the different viewpoints, especially the "please don't cure us" crowd. The spectrum at times can seem as wide as the Grand Canyon, but reading these blogs reminds me what the similarities are and what bonds these children (and us parents) together.

Just tonight, I found 2 great blogs about the Christian life. I certainly hope and expect to find more. I also hope to find more folks who are running special needs programs at their church. I know there are thousands of them out there, maybe they are just late to the blogging world like me :)

Special Needs Ministries - resources

Here are a few links to organizations or ministries devoted to the creation or care of special needs ministries.

• Joni and Friends
• Key Ministry - equipping churches
• Access Ministry at Mclean Bible Church
• Assemblies of God
• Sycamore Tree Ministries
• Anabaptist Disabilities Network
• Christian Church Foundation for the Handicapped
• Affordable background checks for your ministry workers
• Lutheran Disability Ministries

That is, of course, a very small list and just a few of the sites I've found very useful.
If you are looking to start a ministry, or grow your ministry, I'd start with the 1st 3 links. Joni and Friends and Key Ministry are awesome sources of info. Access Ministry is an incredible ministry in Virginia; if you can get to the yearly conference, go!!

Do you have others? Please let me know!

Are you involved with a special needs ministry at your church?

Love

Usually my wife does the long-term worrying - what will happen to Grant when we're gone, will he ever talk, will he have friends? I tend to stay in the day-to-day; it's just too crazy for me to look out farther than a couple of months at a time.

But today... I'm finishing The Memory Keepers Daughter in which a very minor part of the story is a girl with Downs falling in love at age 24. The descriptions of their unmasked affection and unabashed hope forced to me ponder the future. Will Grant find love? Will he feel attraction? Will he be loved? Will he experience heartbreak?

I know my other 2 will experience this part of life. Cassidy, at 11, is very close (too close for my own good). Owen, at 4, will be an early casanova; it's obvious to anybody who knows him.

But Grant... I guess I should worry about whether he will ever experience friendship. I do hope that will come long before love. When will that come? How will it start? What will click in his mind to realize that he can give of himself to enrich another person's life, and to realize that he can receive joy from another?

Ok, that's enough of that. I'll be dreaming about it tonight, I'm sure. But tomorrow, it's back to the day-to-day for me.

Happiness between bribery and discrete trial...

In general, ABA has not been the best treatment for Grant. I do give the therapy credit for the early days in bringing him out when he was completely lost in his own world. At that time, he did not respond to us, and the repeated trials eventually got him to pay attention and look around. However, as time went on, he did not respond well at all to discrete trials; he hated it. If anything, discrete trial became its own "aversive" to his behaviors :)

What does that have to do with today and our path towards chelation? Well, let's see... the boy who we were convinced would starve before he would eat foods outside of his tiny menu of acceptable items is now on a diet which pretty much bans all of the food he used to eat.

No dairy (cheese, milk, ice cream, the list goes on forever.
No corn.
No soy.
No oats.
As little sugar as possible.
No pears
No peanuts

And, we are now up to 5 supplements - Drainage complex, nistatin, zin, vitamin b6, and dmg... with 6 more to add over the next 10 days - enzymes, vitamin c, cod liver oil, calcium, magnesium, and alpha ketoglutaric acid. All this for a kid who would fight any kind of medicine in the past.

After a week or so of struggling to find something, anything he would eat, we are getting somewhere. He ate some steamed carrots and fried chicken. He is also taking all of his supplements. How? Why? Believe it or not, our arch-enemies the Teletubbies have something to do with this. Grant is obsessed with the tubbies; when they are on TV, he loses control. The rewinding goes out of control (not that it ever is in control), the arms and legs go wild, the squealing, everything we are trying to teach him to control goes out of control. So, we do not let him watch this show. We do however USE the tubbies in other ways - we use them to communicate with Grant, to draw with Grant, to write his letters, and on and on.

But, to eat this food and take these supplements, we've had to break down a bit and use the tubbies as a last resort; he gets to watch them if he eats the food and takes the pills. AND HE DOES! Amazing, simply amazing. Watching him eat a carrot or take a capsule is like waking up and suddenly remembering you are on vacation for a month. Elation and unbelievable, all at the same time.

thx Teletubbies! Ouch, that really hurt to say that...