Sunday, December 24, 2006

Chelation and Christmas

Somehow I fell out of the blog "habit" back in October; not only have I not been writing, but I haven't been reading either. I can blame it mostly on the kids being back in school and work being busier than ever, but I simply haven't made it a priority. I miss it greatly, and resuming this "habit" will definitely be a New Years resolution for me.

This blog started out as a way to keep track of Grant's progress with his dietary changes and his chelation. He's been a real champ through it all, I don't think the rest of us would have fared nearly as well. He's become used to the foods he can eat, and has learned that he just can't have most of his favorite foods any longer. When it started, it would take 40-60 minutes to get him to take his supplements. We tried many different methods, but there's no getting around the fact that it's very unpleasant to taste. We've had frustration with giving him medicine previously, but this was twice a day! We thought it would never get better, every night was such a battle, so draining and defeating. But now, he's always done in less than 5 minutes! We are so thankful! Over time, we've found the following have made the biggest differences:
- changing a few of the supplements, mostly the calcium
- mixing the powders w/ just enough fruit syrup to mix it up, but only so much that it takes 3-4 spoonfuls to get it down
- letting him choose his reward. Some nights, he doesn't even ask for anything, he just takes and it and goes on his way. At first, it was the Rice Dream ice cream that was the great motivator. He's burned out on that a bit and of course it's colder now as well. He's done it for a couple of "hidden" DVDs (Teletubbies and Spongebob) that he only gets to watch for rewards. And lastly, he's asked for "fire" - well not verbally, but by getting the propane lighter and handing it to me, then pointing at the fireplace. The last month or so, he has enjoyed watching the fire start, then putting the beanbag in front of the fireplace and wrapping himself in a blanket to fall asleep in front of the flames.

Next month, we have the first follow-up test from this first round of chelation. We'll find out whether the metal levels (lead and mercury in his case) have gone down, or whether they are going to take longer. Overall, there is no doubt that his eye contact has improved greatly, and his attempts at speech have greatly increased. He truly has many more words but the best part is that he is trying to speak on his own more often. He wants to make his desires known, it's so hard to watch him try to form his words, knowing that the wheels are spinning in his head trying to put them together correctly.

Grant has been so excited about Christmas this year. It was only a few short years ago that he had no interest in presents, no interest in the family gatherings to open them together. Last year was definitely an improvement, but this year when we started decorating the tree, he said "presents" completely unprompted. Unlike last year when he would just start opening presents he found under the tree (way before Christmas), he now understands when we tell him he has to wait.

Owen and Cassidy, of course, have such a deeper understanding. Cassidy has been making presents and buying presents for everybody under the sun. Owen has become Mr. Calendar Watcher and fully understands the concept of time and days now. He has been making his Christmas list for some time now and will share it with anybody who will listen.

With tomorrow being Christmas Eve, it's very unlikely I'll have another post before Christmas. We'll head over to the in-laws for homemade soup and family time and then we'll get home late, wrap the remaining presents and prepare to be woken up way too early!

Have a merry Christmas everyone!

Tuesday, November 21, 2006

A hero for our kids - rest in peace Dr. Rimland

I was shocked to read tonight of the passing of Dr. Bernard Rimland - a true hero for our generation. Before I was even born, Dr. Rimland was fighting the medical establishment to improve the lives of all touched by autism. When history looks back at the great leaders of our time, I'm sure his name will always be brought up.

It's been 4 1/2 years since our own son was diagnosed with autism. In those days, as we searched for help and hope, it was his web site and publications which provided a great source of education and ideas. Certainly our son is better off because of the early information we learned from ARI.

May we always remember his fight and strive to give back what we can to the autism community.

Friday, November 10, 2006

3 weeks?

Has it really been 3 weeks since my last post? I've honestly missed it and have tried a few times to make a post "happen", but unfortunately I've come down with "too busy at work" syndrome. It's just been crazy lately and I've let my blogging pay the price. Or, perhaps I was frightened off by the concept of NaBloPoMo - does that make me a na-nablopomo? On the positive side of NaBloPoMo, it has brought a daily post from MOM-NOS, my favorite blog after she had reduced her postings quite a bit in October.

Wednesday afternoon brought our annual IEP for Grant. We had not been so unprepared for an IEP since our very first one (over 4 years ago!) when we didn't even know what an IEP was. So why were we so unprepared? I'd like to blame it on work, but honestly, our philosophy is that Grant's education always take priority. I could even blame it on the construction going on at the house. But no, it really just boils down to this - things are going good. We are totally on the same page with each of Grant's educators - classroom, OT, and speech. Grant is making real academic progress this year and he is really trying hard to vocalize to communicate. There are no major services that we feel the school district is denying us.

Grant's teacher wrote up a set of goals and asked us to review them about a week prior to the IEP. I had a pretty quick glance but never made the time to do a complete review or write up my own (shame on me!). But you know what, it was a great IEP. The reports were great, and it's just so relieving to know we all generally see the same challenges and progress from Grant, and we are all seeking the same goals.

Without delving into the nitty gritty of the goals in the IEP, here are the main points:
- improve his reading and book skills up to a Kindergarten level (he is in 2nd grade)
- name and be able to address his classmates and his teacher
- tell time
- addition / subtraction w/ #'s up to 10
- master his numbers to 30
- learn 25 new words (according to the report, he sight reads over 50 words now!)
- improve his vowel-consonant sounds and use 3-word sentences

His mainstreaming in the Kindergarten class is going as well as we could have possibly hoped for. He spends up to an hour a day in the K class; he's doing the work and learning in an environment different from the SDC class that he's become accustomed to after 4 years. Our overall IEP goal is to reduce the academic and social gap between his chronological age and his "school" age. If mainstreaming didn't move us toward this goal, we wouldn't do it. But the amazing thing is, and it's still shocking to think it's true, is that he is finally at a place where it really is the right thing for him and it really is helping him toward that goal.

Saturday, October 21, 2006

Saturday morning...

Saturday mornings at our house are definitely the most free-flowing times of our week. We cherish this time, probably at the expense of getting quite a bit done :)

In the spirit of Saturday mornings, here are a few thoughts from the week.

Grant came down with an ear ache on Monday. On the positive side, for the first time ever he was able to tell us what was hurting him. He came right to us and said "ear" while holding it. Of course the negative side was that he was in pain. In addition, this is the first time since he's been on this strict diet that we've had to deal with a medical issue. Ok- get some pain reliever. Wait, what's in that pain reliever? Food coloring? Sugar? Are you kidding me? Ok - get to the store and find something more suitable for him? What - you mean there is not one children's pain reliever at the drug store that doesn't have sugar or food coloring? Hmmm, wait, what's this? Ear drops? Hmmm - maybe if this helps we won't have to worry about going to the doctor and dealing with antibiotics...
So, after some struggle, we applied the drops, and then some more when he was asleep. He had a fussy day the next day at school, but he hasn't complained about his ears since. Yeah!!



I haven't posted about the pool in quite awhile. It's been just over 5 weeks and this is the progress so far. We're maybe a week behind schedule, but overall it's gone very well.

As you can see, the next step is to pour the concrete around the pool, this will be done by Wednesday. Next comes the equipment and hookups, and then the Pebbletech finish on the pool. Finally, fill it up and swim! We are almost there!




This morning, Grant was looking at the Teletubbies on pbskids.org and wanted to print some. Fortunately, after a couple of months since our old color inkjet bit the dust, we just got a new one this week. We printed a few out, and then I asked him to cut them out with scissors. He did such an awesome job! It takes so many skills coming together to cut out a picture. For our other kids, it could not have come any easier. For Grant, it's been 5 years of school to get this skill. Focus, hand/finger coordination, holding the paper while cutting - wow, it's just amazing to see him do it.

A few years back, we experienced our toughest time with one of his teachers - an OT at school. It was so apparent, so quickly, that she was not the right person to work with autistic kids. In some ways, it reminds me of Melissa's and Tara's struggles. In more than one meeting, the OT described Grant as "weird", and it mostly started with his struggles with using scissors. Looking back, we should have ended all contact right then and there, but we tried for a few months. Finally, we parents collected our voices together, made our concerns known to the district, and the OT was removed. We sure won't put up with anything like that ever again.

But, back to the positive. What a day - what a joy to see him learn and put his skills to use.

Friday, October 20, 2006

Love Thursday - Animal Style

MMM - I am so hungry right now and I'm trying to be really good and not eat so late, but my hunger has inspired my Love Thursday post.

In-N-Out Burger.

double-double animal style
fries
x-LG iced tea - no lemon or sugar

Is there any better food in the world? Certainly there is no better burger, and no better fries. And, almost as good, the service ALWAYS is done with a smile, and it is ALWAYS right.


As always, Love Thursday brought to you by Chookooloonks.

Tuesday, October 17, 2006

Catching up

Sometimes time flies so quickly by it seems like the clock hands are going to spin right off the wall. Before I let them spin any faster, here are some happenings from this week.

After our team meeting last Thursday, I decided it was time to put training wheels back on Grant's bike. It's been far too long since we made any progress and we just needed to start over again. Earlier in the week, I had made just the opposite decision for Owen and had taken his training wheels off. While I was driving home on Friday, I must have had a really bad reaction to lunch because I thought I would be able to take the boys to the park on their bikes. In a moment of delirium, I figured Grant would just magically take to his new training wheels and I would be able to hold Owen's bike while he learned the trick of riding on two wheels. Um, no. Grant still did not want me to let go of the bike so, for the most part, I ended up walking/running to the park holding the back of Grant's bike while also holding on to Owen's little bike (w/o training wheels). Needless to say, my back will never be the same.

On Sunday, I had the opportunity to speak to the congregation about Club Kangaroo. Pastor was teaching on parenting and he wanted to highlight Club Kangaroo as an example of how we are supporting both parents and kids. I probably was not quite as prepared as I could have been, but the response was really great. We had 3 new requests for helper applications, and one new application for a child. Great stuff!

Sunday was also a day of hard work (Sabbath anyone?) since the pool guys were supposed to fill in the trenches with dirt so the concrete work could begin on Monday. Since that didn't happen and we didn't want to delay our concrete work, I spent about 5 hours digging, swinging the pick, spreading, and moving dirt around the back yard. My back was already on the verge of meltdown from Friday's bike escapade, but we got the job done and work has been going strong on the concrete this week. Hopefully we'll have something to take pictures of by the end of the week and I'll post them here.

Today, one of Grant's paras was eager to tell me a "Grant story" when I dropped him off this morning. On Monday at recess, he initiated involvement with a group of boys who were playing with a ball. All on his own, he went up to them (wow!). They were nice enough (yeah!) to hand him the ball and ask if he wanted to play. Apparently, it looked like he was going to run away with the ball, but then he turned around and threw it back to them. They bounced the ball to him and it caught his finger and bent it back (ouch!). He didn't play any more after that, but what a wonderful new experience for him!

Thursday, October 12, 2006

Off to a good start

Grant has been in the Kindergarten class an hour a day since Monday - it's going good! He's been following along, doing the projects, focusing, and all that good stuff. It's funny, we started the school year less than 2 months ago and this was not even a glimpse of a dream for us. It was completely off the radar. And yet, here we are.

We had our team meeting today with his teacher and the district clinical psych (his main para was out today). This is the last review before the yearly IEP meeting next month. As we went over his data, he's meeting almost every goal in the IEP. So now, over the next month, we need to start planning for the new IEP, coming up with the plan for the next year. What do we think he can accomplish in a year? What's doable? What's a stretch? Is there anything "out of the box" that we should be considering?

At each team meeting (3-4 times a school year), it is our practice to bring a list of "the good things" - about 10-15 things that Grant is doing in his home life that his teachers may not know about. We started this back in the early days when there was a little more contention between the sides. By starting off with the positive, it gets the meeting off on the right foot and seems to always bring the two sides together. In fact, it's been a couple of years since we've even thought of "sides". We really are a team.

Believe me, I'm not saying that we don't struggle with the district for services. We do, and that will continue throughout his education. But our team works together and we do trust that when we drop him off each day, he's getting their best effort.

Sunday, October 08, 2006

Happy stuff

Tomorrow is a major first for Grant. In is 5th year of school, he'll be joining the Kindergarten class for 1-2 hours a day, his first foray out of his special-day class. Our excitement is not about the mainstreaming, it's that he's ready; he's making progress. Here are some other firsts from the past week (so many in one week!) that have us so encouraged.

  • A shipping box full of styrofoam peanuts became the box that Bullseye popped out of to meet Woody in Toy Story 2. No first there, he loves to re-enact Toy Story scenes. But, what happens to all the peanuts? That's right, all over the floor, and that's where this first comes in. I asked Grant to clean it up, and he did it! Every last one, he picked them up and put them in the box. He looked around for any stray peanuts and then knew he was done. Never Before! Of course, we have tried to get him to clean up his stuff, but his attention span usually lasts for about 30 seconds. Not this time!
  • Like most special-day classrooms, I would assume, Grant's works according to a schedule. In addition to the main class schedule, each student has their own work/reward schedule. Each child has their own method for tracking their schedule, according to their abilities. Currently, Grant copies a written schedule to a small whiteboard. But, on Friday, Grant wrote his own schedule, all by himself! He walked over to his board before his para ever had a chance to write hers and started writing - video, A, B, play-doh, Toys. As his teacher said, most kids will learn to write their schedule by rote, but Grant wrote down what he wanted (and wrote the words correctly!), and included the A B options (picking a lesson). An amazing first!
  • On Friday night, we watched The Shaggy Dog with Tim Allen. Grant wasn't too interested so he went to bed while the rest of us stayed up and watched the movie. I didn't last much longer and started snoozing about an hour into the movie. Everybody must've left me there because Grant woke up around midnight and, not finding me in bed, came looking for me downstairs. He woke me up, and took me back to bed. A first for a few reasons - normally, he would just wake up and climb in our bed; if I'm not in bed, that's just more room for him. Otherwise, if he wakes up and comes downstairs, he's most likely going to try and watch TV. But not that night, he was just so aware.
There was a time a few years back when one first every 6 months was a cause for celebration. Now, in the matter of a week, we have 4 firsts, all unique and oustanding in their own right. It's actually early Monday morning now, just a few more hours till his big day at school.

Moving Forward

As the clock ticks into the wee hours of Sunday morning, my attention is fixed to a show I Tivo'd last week - Eyes on the Prize, on PBS. Evidently, it has not been shown on TV for quite some time, and this is a shame. As someone born the year that both Martin Luther King, Jr. and Robert F. Kennedy were killed, my experience with the Civil Rights Movement comes purely from TV, Film, and stories handed down. This documentary is mesmerizing. If you have the chance, watch the 2nd and 3rd episodes; you won't be sorry.

While watching, the sight and sounds of MLK speaking reminds me of a thought I've had for several years now. Why is it that our public leaders are so devoid of speaking skills? It strikes me that no leaders, at least at the national level, are able to lead us with their speech. No one is willing to write their own material, speak their own mind, and say it in such a way that we would actually want to listen. I have no doubt that the day is coming soon when someone will figure this out. As much as I hate to say it, I don't think it even matters what this person says, it will be how he/she says it. This country is starving for a leader and one will eventually arise. Someone will step out from behind the disgusting party lines and become so popular that the parties won't be able to reign him/her in. As history has shown, this type of leader can be the best and worst of times. It is our responsibility to only allow for the best.

Thursday, October 05, 2006

Love Thursday - pumpkin time

Even early on, big sister was right there for little brother. I love how her hands are pressed just tightly enough to comfort him.




See more Love Thursday at Chookaloonks.

BIG DAY

Every morning, it's the same routine. Get everybody ready and out the door. Get the boys in the car. Take Grant to school. Try to control Owen in Grant's class (he tries to run the class). Take Owen to school. Drive to work.

Every day - the same schedule. The only variety is - how late are we, will the boys behave, or will one of them (usually Owen) be tough to deal with.

But Not Today. No, today was Good News Day.

After walking Grant in to his class, his teacher pulled me aside.

"We're going to start mainstreaming Grant", she said. My morning-fogged brain suddenly cleared - did she really just say what I thought she said?

"We were going to put him in a 3rd grade class, because there is a really good teacher in that class. But his para said 'Let's put him in the Kinder class. I think he can do the same work as the kids in the class.' He'll be in there 1-2 hours a day. We think he's ready, is that OK?"

"Of course, if you think he's ready" I said. My eyes welled up with tears; I couldn't say anything more or I would have lost it.

"We are really excited - he's ready", she said with a smile.

Can it be? Are we really making progress? In the first few years of school (ages 3-5), we had hopes of mainstreaming. But, over that time, it became clear that his speech was not going to come as quick as we hoped, and his ability to take instruction was not where it needed to be for a classroom environment. In addition, he receives more individual instruction in his SDC than he would in a 2nd grade (his grade level) class. We knew that it was not in his best interest for us to push mainstreaming. It would happen when and if the time was right.

And today, the news came that the time was right. He's making progress. He's learning. He's applying his skills.

It's a beautiful day.

Sunday, October 01, 2006

Club Kangaroo - the beginning

Next week will be 5 months since Club Kangaroo's first Sunday. I'll have to figure out a way to throw a celebration here on the Siren blog for the 6th mensiversary (that's a new word I just learned!).

Although it's been 5 months since we started, it's been just over a year since our journey began. Here's our story.

During the summer of 2005, we began to seriously consider moving out of California. Both of us had been born here, gone to school here, made friends here, had family here, got married here, had our kids here, and so on.... In addition, neither of us are risk-takers, and moving - to us - was the one of the ultimate risks. So why?

Real Estate is expensive here - just living here is expensive. Do a search if you don't believe me. The school system used to be great - about 40 years ago. The infrastructure of California used to be great - about 40 years ago. Ok, you can probably say that about a lot of places, right? Those reasons by themselves are no reason to leave home. But in combination, our plan became:

  • sell our home here
  • move someplace "better"
  • reduce our mortgage to almost nothing
  • leave the "tech" career and become an elementary school teacher
  • Have enough money to do what was best for Grant, and plan for all of their education.
After a lot of research, we decided on Raleigh, NC as that "better" place, meeting our criteria of:
  • Good weather - no freezing winters!
  • Good/Great schools, especially special ed.
  • Affordable Housing
  • Good job market
  • Good community
  • Near water, and not too far from the beach.
And, in September, the two of us took a road trip! After all, if we were really going to get serious about this place, we better see if we liked it, right? Prior to our trip, we thought it would be great to visit a church while we were out there. Although we were getting information from various sources, I actually ran across an online newspaper article about a church with a special needs program! How cool! We had never heard of such a program, but it certainly sounded perfect for us.

Our trip to Raleigh went way better than we had expected. I was sure that Staci would find a few reasons not to move, and so was she. But we were both wrong, and we were quickly becoming excited about our big life change. Our trip to Crossroads Church was a highlight as well. If you are ever looking for a church in Raleigh, check it out! We felt welcome on our first and only trip there. We didn't get a chance to speak with the leaders of the special needs program, but we did get to check out the children's programs - we just felt so at home!

Over the next 3 months, and into the beginning of 2006, we just kept waffling back and forth. Yes, we're moving! No, we can't do that- it's too nuts! How will we survive without our extended family?

And then, the moment of revelation. We were having dinner with our Children's Pastors (I've been working in our Children's Church for about 8 years now) and talking about the move. It suddenly became so clear, to both Staci and I, that this whole "move journey" was about one thing - we were to start a program at our church for special needs kids! It was so instant, and so clear, that it could only have been God speaking to us. The Children's Pastors were so excited to hear us proclaim this decision, right there at the dinner table; they had been praying for someone to start such a program for over 2 years. No more move - no more indecision. On to His plan...

It is a wonderful place to be where you know you are doing what you've been called to do - this is how we both feel about starting and leading Club Kangaroo. In future posts, perhaps on the 6th mensiversary, I'll detail how we got started and how the Club is progressing.

Thursday, September 28, 2006

Love Thursday - the boys

Amazing how a light can shine in the darkest of times...

May, 2002 - far and away the most difficult period in our lives. A whirlwind of circumstances, the likes of which we had never seen before, and hope to never see again.

The one which matters here though is that Grant had just been diagnosed with autism a few weeks prior to Owen's birth. At that time, Grant was completely in his own world; you had to be right in his face to get him to even respond.

But here, Grant is holding Owen, his newborn brother - is that a look of love on his face? A look of caring? Certainly, on my face, it's a look of hope.

See more Love Thursday at Chookaloonks.

Wednesday, September 27, 2006

The pool has walls now...

Quick update on the pool - they sprayed the gunite to form the floor and walls yesterday. It really looks like a pool now!

Here are some pics from when they finished the rebar last week, and the rest of the pictures from yesterday.

Last week
Yesterday

Everyday, Owen asks "Is it swimming day today?"

Previous Posts: Day 1, Day 2

Sunday, September 24, 2006

Honor Star

Cassidy was crowned an Honor Star on Saturday in Rocklin, CA and we are so incredibly proud of her accomplishment. Stars is the 3-5th grade girls club in the Assemblies of God Missionettes program. It's a great club and has been quite an experience for Cassidy in many ways. I think summer camp each year would be her favorite memory.

Becoming an Honor Star requires attaining a series of badges, much like Girl Scouts, reading the entire New Testament, memorizing about 20 verses, and reciting the Stars motto. It was a lot of work and near the end we weren't quite sure if she was going to pull it off. She wanted it though, and here we are.

The ceremony required a 2 hour practice in the morning so that we could all figure out the process of daddies escorting their daughters down the aisle, moms crowning their daughters, and a few other odds and ends. I admit to being a little negative about the long day prior to Saturday (sorry!), but it was really a great experience. Sixty 6th graders - all on the cusp of leaving childhood and entering (scary!) teendom. As I sat there behind all of these girls, it struck me how they had worked so hard, had so much fun, learned so much, come from such a variety of backgrounds, and attained the same goal. I'm so excited to imagine the great things these young women will do in our future.

Finally, the day brought me realization that our little girl is growing up. The "little girl" days have been slipping away for some time, but it won't be long and they'll be gone for good. I need to make every moment count, remember whatever I can, and teach her by example. There will come a time when I'm not "the voice" in her life, a time when she listens to others for their wisdom, a time when she seeks life's answers on her own. I know it's coming, but of course I don't know when. However, when it does, I want her to be prepared, to have a strong foundation, to make those decisions from a place of strength, and to truly know that she is loved.

Thursday, September 21, 2006

Love Thursday - let him eat cake!

Good 'ol Love Thursday is back, thanks to Chookooloonks.

This is Owen on his 1st birthday - think he loved his cake? What a great day that was - lots of family, food, and fun.

Isn't there something just magical about 1st birthdays? We've used all our 1st birthdays up now and we're on to bigger numbers now. But, we still get to enjoy the 1st birthdays of friends and families children - welcome to the world of cake, candles, ice cream and presents!

Monday, September 18, 2006

Dance Fever

Some moments stand out, the moments you will never forget, the moments in which life changes. Tonight we had one of those moments.

Grant danced.

Grant doesn't like music. He doesn't mind music in the car, but he generally has no interest (and is usually quite averse) in being personally involved with music. Not only does he not want to play music and not want you to sing to him, he also certainly does not dance!

We had family over for our nephew's birthday, just hanging out watching the Steelers game. I wish so much we would have had a camera, especially the video camera, but it was so shocking and so funny none of us could move. Out of the blue, Grant stood in the middle of the room and started dancing, trying to move his arms and legs to some inner tune. The motion was somewhere between a marionette and Elaine's dance on Seinfeld.

As if the dancing wasn't shock enough, he was fully aware that we were all watching him, and he seemed to like it! He was looking at each of us while he was dancing, a big smile on his face showing us that he was enjoying this as much as we were.

Tonight, Grant danced.
What's next - talking? friendships? Peace in the middle east?



Wednesday, September 13, 2006

Leaking Metal

Although the progress on the pool today was exciting, it didn't compare to the news we got about Grant today. Today was our Dr's appt. to review the results from the 1st round of chelation. The results were very, very encouraging.

The original test results back in July reported high, although not extreme, levels of mercury, very high levels of lead, and high levels of tin and aluminum in his body. The results of the first round of chelation showed that these very same elements are now leaving his body! The results exhibit these encouraging signs:

  • Grant has had no adverse reactions to the chelation treatment.
  • Grant's body is not "blocking" the metals from leaving his body.
  • We will not need to try/research further methods of chelation (whew!)
  • Any hoped-for results will be seen in the next few months.
The process now continues for the next 3 months with a twice-weekly application of DMSA (cream). Assuming there is no negative reaction, we will run a full battery of tests after the 3 months to see if metals are still leaving in large doses. From there, who knows!?

Day 2 - can't we just fill it now?


Today was day 2 of THE POOL - wow! The yard has now been completely broken up and graded, with all of the concrete and landscaping taken away. Even better, the shape of the pool is in place and it is dug out to its full depth of 6.5 ft.

Progress will start to slow down from here on out. Over the next few days, they will be building the structure of the pool to prepare for the gunite (concrete).

Here are all of Day 2's pics.

Autism and Google

Google always has something new to play with, but the news archive search may prove to be the most addicting. The news archives go back to the early 1800s! Although it's cool seeing some of those old news sources, the character recognition leaves a lot to be desired; I think my old Commodore 64 did a better job than a lot of these...

I started playing around with searches and then it hit me - when did autism start showing up in the news? The first understandable source I can find is the Frederick, Maryland News from 1949. According to the paper, "welfare state" and "autism" are now banned from press releases and speeches prepared by the Republican National Committee. Crazy! All you democrats should have a field day with that one! :)

The first description of autism I find is in the Salisbury Times (Maryland) from 1957. Although unrelated, I had to laugh at drug houses conservatively estimate that last year Americans took out 35 million prescriptions for happiness pills. Times haven't changed a bit! As for autism, the mention is only because the article is talking about the publishing of a Psychiatric Glossary, and of course autism starts with A...

The first real article shows up in 1960 in The Valley News from Van Nuys, CA. A good description is given, but the cause is listed as refrigerator moms. It is also described as wooden doll illness.

Articles grow very slowly until the early '80s and then they grow exponentially. There are approximately 2700 in the '80s, 12000 in the '90s, and then over 9000 in 2006 alone.

I'd love to hear about interesting articles from the past if you find one. Happy searching!

Tuesday, September 12, 2006

Finally - it's time to start!

Back in May, we somehow decided that we could put a pool in the backyard. The kids LOVE to swim, and we do too. Grant, especially, belongs in the water. Swimming is probably his favorite activity and he has pretty much taught himself to swim. This summer, he started diving down to pick up diving rings! It's so wonderful so see how comfortable he is in the water - everything makes sense to him there.

After a summer of bids and decisions, waiting, more waiting, and EVEN MORE waiting, today was the day! The team came to destroy our current backyard and prepare it for the big hole.

Of course, today was 95 degrees so it made the idea of a pool that much more exciting. By the time the pool is ready, it'll be in the 60s for the rest of the year, but we'll be swimming any way! Here are the pics of today's destruction.

Thursday, September 07, 2006

The gap



Grant lost his first "front tooth" on Monday. A few years back, we thought for sure he would freak when his first tooth became loose. Boy, were we wrong. He wants it out, and he doesn't mind wiggling it. This time was no exception, he worked on it for about two days, and now he's got a natural straw holder.

Isn't it funny how a missing tooth is so cute for about 5 years of your life, but after those 5 years it's shame and costly trips to the dentist?

Tuesday, September 05, 2006

Milestones

I can't believe this is the 3rd week of school already. Mornings are still crazy; we should have it figured out by Memorial day... Cassidy starts school at 7:40, Grant at 7:50 and then I drop Owen off at preschool after that. Does anybody else's school start that early? And here I am reading blogs at 12:30 am. I wonder if that's why it's so hard to wake up in the morning?

The beginning of the school year and beginning the process of chelation have had me thinking about how Grant has grown in all areas since he was 3. Here are some of the major areas that have made such a difference in his/our lives.

  • Saying yes/no - I think this came late in his 4th year and I still think it is the single biggest hurdle he's leaped. Prior to this, it was nearly impossible to find out what he needed or what he wanted. What a marvelous experience it was to see (at first his response was in sign language) and then hear a response when we asked him a question or gave him a choice. I believe this skill also quickly allowed other communication skills to flourish as he figured out he could get what he wanted with so much less effort than before.
  • Unprompted words - For so, so long all of Grant's words were prompted. Although he was beginning to put the sounds together in forms that we could just begin to understand, it was so much work to prompt him. Unprompted words, when they appear, are like finding a $20 bill on the ground - totally unexpected, exciting, and gone in the wink of an eye. He says all of our names now, although saying 'Cassidy' is the most impressive (it's his only 3 syllable word). He has said 'home' to us when we're out somewhere and he's very tired. And, of course, 'Bathroom'.
  • Putting on a helmet - If Grant is going to ride his bike, he has to wear a helmet. Well, I kept telling myself that anyway. We tried to get his helmet on for 3 years. A couple of times, it got on but it was short lived. For about 18 months, a great friend of ours had us come over and work with Grant while riding a pony. I'll have to post about that experience another time, but of course that required a helmet as well. Yeah right.
    And then, one magic day late last year, he just put it on, buckled the chin strap, and we were off. Oh how I wish he could explain what happened that day and why it is no longer a problem, but it isn't and that's all that counts!
  • Toilet Training - We are so fortunate that Grant is now fully potty trained and never really had that fascination with poop that so many other kids have. But, oh, those years of training. I truly doubted whether he would ever get it. Time after time, I would clean up the mess. Time after time, we would bring him to the potty. And then, he started picking the toilet icon all by himself. And then he just started going by himself. And then he started cleaning up after himself. And now he washes his hands when he's done. And it never ceases to amaze me.
  • Dressing himself - How do you teach him that the tag goes in the back? To snap? To zip? To match colors? He picked up these skills pretty quickly, actually. His OT was awesome in getting his fingers to button, zip, and snap. He found the skill interesting and picked it up. I love being able to say "Get Dressed" while we are downstairs and he goes upstairs, picks out some clothes, and get dressed.
  • Eye Contact - When this all started, Grant was completely unresponsive. I'd get right in his face and there would be no response (this was around 2.5 years). The ability to make eye contact is of course very hard for so many of our kids, and the "teaching" of eye contact varies widely. ABA is "look at me" 5000 times a day. RDI is getting him to find interest in your face so that he seeks eye contact. I definitely lean towards more the RDI approach, but more than anything, I think it's just been time and maturation which has brought him forward in this area.
    Tonight, Grant and I had a very tough time when he needed to take his supplements. After about 20 minutes, I sent him (sternly) to his room. He was upset and of course I was frustrated as well. A few minutes later, I went up to his room to try and explain the concept to him (again). As he sat in his bed, playing with a few character toys, he looked right at me with his eyes wide open, easily making contact for 7-10 seconds at a time. I talked to him, he looked at me. I talked some more, and then he leaned forward and gave me a hug. He looks at me to gather information, not because I tell him to. I think he's curious. I think he's puzzled. I think he's the most amazing kid.
I'm stunned when I look at this list. He has worked so hard, and he wants so hard to understand and to be understood. We will continue to work as hard on the new skills as we have on these, we'll continue to celebrate the victories, and the future will bring what it brings.

Saturday, September 02, 2006

Youthful tears

Tales from a Saturday morning...

Owen, our 4 year old, comes down the stairs holding his ever-present Barney the purple dinosaur. With that amazing youthful attribute of being fully awake about 2 seconds after opening his eyes in the morning, he looks at me with his eyes stretched as big as possible. "Daddy!", he says breathlessly, "Do you know what day it is!?"

I ponder for a moment, trying to guess what "the day" is. Usually it's something like "green day" or "foggy day", whatever strikes his fancy as he gets out of bad. "Purple day" is my answer.

The wide open eyes quickly shut as tears begin to fall. The excited voice quickly muffles. "Daddy", sadness quickly escalating into despair, "you mean today isn't my birthday? It's not my birthday!?" Sobs fall uncontrollably as Barney dangles from his hand.

"No, it's not your birthday today"... I walk over, pick him up, and try to hug the sadness out. I can only guess that he must have been dreaming about his birthday (he's got another 8 months to go) and walked downstairs fully expecting it to be true. Within seconds, the tears are gone, the sadness forgotten, and we're off to an exciting Saturday.

Monday, August 28, 2006

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.

Sunday, August 27, 2006

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...

Tuesday, August 22, 2006

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.

Sunday, August 20, 2006

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.

Saturday, August 19, 2006

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...

Friday, August 18, 2006

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.

Wednesday, August 16, 2006

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.

Monday, August 14, 2006

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.

Saturday, August 12, 2006

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.

Friday, August 11, 2006

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...

Tuesday, August 08, 2006

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.

Sunday, August 06, 2006

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 :)

Saturday, August 05, 2006

Special Needs Ministries - resources

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

Friday, August 04, 2006

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.

Wednesday, August 02, 2006

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...

Sunday, July 30, 2006

Animal sounds

Before I forget, Grant said two new words last night - sheep and chicken. I had never heard 'sheep' come out of his mouth before, prompted or not. 'chicken' had been heard a few times, but I thinka all prompted and mostly food-related. He said these words as we were drawing on the Magna-Doodle, one of our favorite activities together. Not only did he say these words, but he started making the animal sounds too! Wow!

Club Kangaroo

On Sunday, you'll find us at church, and at church, you'll find us at Club Kangaroo.

I guess it's been about 3 months now since CK officially started, but I think God's been planting the seed for quite some time. CK is our program for special needs kids. We have a classroom for those kids aren't able to be in a classroom for any reason (and there are a wide variety of reasons), and we have one-on-one buddies for the kids who are able to be in a class. It has been such an incredible experience to serve in this way, and we certainly hope to do it for a long time.

As parents, we know how hard it is to bring your autistic child somewhere, including church, and hope that they can "make it". It really isn't fair to either the child, or to the volunteer staff. So, we started CK with the strong backing, encouragement and full support from the pastoral staff, especially the children's pastors and the senior paster. In addition, we team up with a great couple as we each lead one of the two services, and our volunteers have been just incredible.

I wish you could see the joy, the relief, on a parent's face when they realize that they can drop their child off and know that this child will have someone's full attention, teaching them, playing with them, and protecting them. Even more exciting, we see the children grow in an environment tailored directly for them.

Club Kangaroo on Sundays - what a cool place!

Saturday, July 29, 2006

Other perspectives...

Since I just started this blog, I thought I'd look around and see if other families are doing the same. Uh, yeah! However, I was a bit surprised by some of it. For example, one of my earlier posts was regarding the short autism documentary done by Autism Speaks. I found it very moving when I watched it originally and much of it hit home for me as a parent.
One of the better blogs I found was Mom - Not Otherwise Specified and it led me to a ring of autism blogs. The theme was quite surprising to me. We've been in the world of autism for 4+ years now; I've read a ton of books, newsgroups, been to meetings, worked with the schools, blah, blah... but this is really the first time I've run into such a strong opposition to many of the popular autism treatments and hypothetical causes. In addition, there is a strong backlash to the movie mentioned above; completely unbeknownst to me until last night.

I think it is too simplistic to blame Autism Speaks for making their movie "emotional". Honestly, I identified with 90% of what the parents said in that movie at some point over the last 4 years. As for the comments that parents said some disturbing things, that's just life. Just as autism is a "spectrum", we've run across just as wide a spectrum of parents. Some, in fact most, have accepted this unexpected path change in their life and are working so hard to help their child. Others, though are not prepared to accept that change, or even accept the diagnosis. Still others have a very hard time dealing with the day-to-day struggles. Our 4 year old is a delight, but he's also very stubborn, independant, and defiant. Dealing with those traits tests our patience to say the least, and our skills as parents. But those struggles just aren't the same as those we have with Grant. We know what it's like to be stubborn, defiant, and independant. But, we don't know what it's like to not have communications skills, not desire friendships, to struggle with the constant sights and sounds of our daily being. It is this difference that makes it a struggle.

Lastly, many of the blogs reference a movement by some of the older folks in the autism - "we don't need a cure!". Ok, fine. If you don't, then who is forcing it down your throat? But many, many of these kids do need a cure, the unborn need a cure. It's not just an issue of being socially unaware or different, my child can't communicate! We have been working for 5 years trying to get him to talk again - yes, that's right - he used to talk. And, then it all went away, like a dream, an image that sits just outside your range of vision. You know it's there, but you can't see it or touch it. These kids need to be able to communicate, they need to be able to learn, they need to be able to work, they need to be able to make their own decisions - none of those things will happen if we leave them alone. More importantly, whatever you believe about the causes, there is absolutely an environmental aspect to this problem. If there is no cure, the numbers will continue to grow and the needs will become so great (if they aren't already) that the needs will go unmet. A cure is needed.

Just Beginning...

We are on day 3 of starting the supplements required for chelation. In addition, we are also radically changing his diet as a result of the allergy tests. Right now, he is on "drainage complex", a homeopathic formula, and nystatin (to help control yeast growth in the gut).
He's already a very picky eater, and we are now taking away most of the things that he enjoys. Fortunately, the tests came back fine on gluten, so we don't have to remove all wheat. All dairy/casein is out though, so we get to try rice milk and lots of other not-so-yummy stuff. As much as possible, we are going to try and do this diet with him; I'm sure it will help us eat healthier and it's just too hard to keep food in the house that he can't eat.

I remember when he went on gfcf before, a couple of years ago, cheese was a major issue. We never did find a decent casein-free cheese. Hopefully someone's figured that out by now... the search is on!

A glimpse into autism

What is life like for an autistic child? What is life like with an autistic child? This 13 min film is the finest glimpse I've seen...
http://www.autismspeaks.org/sponsoredevents/autism_every_day.php

Age of Autism series - Dan Olmsted

If you haven't read any of these articles about autism - be prepared to be rattled. Great stuff.
Here's another link, although it seems that many have expired.

Friday, July 28, 2006

Chelation... the beginning

So, after 4+ years since Grant's diagnosis, we have decided to try chelation. We had tried the gluten/casein free diet (gfcf) a few years ago w/ little success, but we had also done it blindly; we did not have any tests done before or after.

Now, we've gone through a full battery of tests - hair, blood, etc. The tests report that his mercury content is low, although lead is relatively high. He is just now beginning the supplements needed to carry him through the process. In addition, we need to begin a new diet based on the food allergy tests. FORTUNATELY, the tests show no reaction to gluten (wheat)!

So, I will try to document the entire process, along with our successes and failures.