a little sentiment and a lot of empathy

I can't write anything today without mentioning the weather; it was absolutely beautiful here today. Somewhere in the 80s, a light breeze, deep blue sky - unbeatable. From the morning, when there's just enough cool to bring anticipation for the heat, to the evening when the cool gradually comes back along with the darkness. So how did we enjoy this weather?

We had a garage sale. Ok, usually that's a total pain, but today's was actually pretty good. Along with the usual "little stuff", we had 2 big items that we really, really wanted to sell. One was our old kitchen table which no longer had a place in our home after the kitchen remodel in April. It had been taking up space in our garage, along with its chairs since then and I REALLY wanted that space back. The second was our old entertainment center which had been in the garage for 4 (four!) years. Unlike the table which had only been with us in this house, the entertainment center goes back almost 16 years. Our brother-in-law made it for us as a wedding present (he also made our kitchen cabinets for the remodel) and it was easily our most prized possession at the time. Often when I would see it sitting in the garage, it would take me back to that small apartment and those early times when things were so much easier. It moved with us to our first house and then again to our current house. After so many years, Staci asked me if I was sad to see it go today. I was - for about 5 seconds :) - but I was sure glad to get the space back in the garage too!

After the garage sale, the kids and I spent the rest of the afternoon in the pool soaking up the sun. The pool has been such a fantastic addition, not only does it bring great enjoyment and refreshment, but it brings us ALL together in a way few other things do. Grant fits right in and enjoys doing the same things as the other kids - in the pool. Owen can swim for hours and the water helps bridge the size/age difference between him and his older sister. It's all good.

As for the empathy, last week I got really frustrated with something. I don't even remember what it is now, although it was probably something Owen wasn't doing (or was doing). But, I do remember the effects it had on the boys. Grant looked at me and reached his hands up at me to wipe my eyes, although I wasn't crying he knew I was upset. He's done this a couple times in the past few weeks, and it's so wonderful to see him empathize. He rubbed his fingers on my eyes roughly and with a lot of pressure as if to remove the pain. As I went upstairs, Owen tagged along and took me to his room. "Daddy, let's play. I don't want you to be frustrated." We proceeded to play a few games and do some coloring until he was sure I was ok. Unlike Grant, he was able to use words and interaction to show his empathy. Grant, like Owen, used his skills to the best of his ability, each going a bit above and beyond what they had done in the past and each showing that they loved me in their own special way.

nice while it lasted

Wow, that last week of school, and the week or two after were fabulous. The weather was insanely nice, the pool was our best friend, Grant was talking more - great stuff.

But this week...

Summer school started yesterday for Grant. In what could hardly be called a coincidence, he started this new stim where he puts his hands over his eyes and presses just hard enough to form a seal then he pops them off his eyes so that you can hear a little suction. Yesterday, he started doing this incessantly. We told him no, over and over, but unfortunately there was so much going on that we couldn't get a program going to tackle it efficiently. I talked to his paras today in the class and they said they would watch it as well. It wasn't as bad when he came home today, so hopefully it was just a reaction to the sudden change in schedule. We'll see... But he's just had a rough week in general - it seems like he has been talking less (using less words), he's "uncomfortable"... tonight he did NOT want to fall asleep. I can't remember the last time he put up such a fight about going to bed and falling asleep. We are so fortunate that he has, for the most part, been a good sleeper. When I read the stories about kids not sleeping, I honestly don't know how the parents handle it.

Owen has been quite a pill as well the past few weeks. I think he is a bit unnerved by the schedule changes as well. He still had to go to preschool while Cassidy and Grant were out of school. Now, he sees Grant's edginess with his summer school. Owen has just been feisty, crabby, and bossy. He pulled the classic 5 year old maneuver today and cut a chunk of hair off his head today. Gotta love it.

Cassidy is taking after me - during the summer I could just lay around all day and do absolutely nothing. Fortunately, she's had quite a few activities to keep her busy, but we really need to stay on top of that and make sure she doesn't become a sloth. On the bright side, she has officially started working with some kids at Grant's speech therapist's office. The therapists have been very happy with her and think she is an absolute natural. More on that to come over the next few weeks.

just passing through

Goodbye preschool - hello Kindergarten!
Last Thursday, we enjoyed Owen's preschool graduation; it was a cute little program and he actually played it cool for the most part. His teacher had warned me that he had been a real clown during practice, making all the kids crack up at various points. I believe her exact words were, "you are bringing a video camera, right?"
So, the little boy with the endless amount of energy, imagination, and humor gets a few months off before the bright lights of Kindergarten. For us, as it is with Cassidy's education, it's up to us to pay as much attention to his education as we do with Grant's. There is no IEP to keep us on track, no regular team meetings, no outside therapies. Whew.

Goodbye schoolboy - hello citizen!
Immediately after Owen's program, we raced home to get Grant ready for his big day at City Hall. A few weeks back, the city had assigned local fire hydrants for painting by the two schools in the immediate area. Grant's class was chosen to be responsible for one of the hydrants; they all had a great time painting it a variety of colors. Most exciting of all, his teacher asked if Grant (and 1 other boy from the class) would help represent the class when the classes would be honored at the City Council meeting for their civic service.
He's pretty easy to pick out in this picture; he's the one looking straight at the camera as if to say, "what are you guys doing to me here?" He did pretty good for being in a completely foreign situation and we escaped out of there before he got too noisy. I definitely got a little teary-eyed seeing our big boy up there.

Goodbye 6th grade - hello Junior High!
With the buzz of the previous night's festivities still fresh, the next morning was Cassidy's graduation from 6th grade. We have been so fortunate to have so many good teachers through the elementary school years. I think she will be remembered by many as the girl who got along with everybody, and especially for her tender heart to the special needs kids. In 3rd and 4th grade, she would play with those kids at recess and got other kids to enjoy doing that as well - she's an incredible kid.
Can it really be that she's heading into 7th grade? Can it really be that I am SO not ready for that?


Goodbye sleep - hello fundraiser!
After a full day of 6th grade girls partying at our house after graduation and then a few hours of sleep, it was time for the 2007 Walk Now. We've participated for 5 years now. It's great to have family come out and support you, and it's humbling to have so many people donate to a worthy cause through our team. However, given that Cure Autism Now has become part of Autism Speaks, and given the many concerns over what/how Autism Speaks is focusing on, we'll probably be raising money for a different organization next year. Any suggestions?



Goodbye lost boy - hello Grant!
This has to be one of the best pictures of Grant we've captured since this all began. It is just truly amazing to look back and see how far he's come, how hard he has fought to learn, and realize what progress he has made. He's no longer "lost", while we may have short periods where he's "somewhere else", he is really enjoying life and our family. Although his communication is slowly progressing, it is definitely progressing nonetheless. Just in the past week, he has asked for me when I wasn't there (daddy?), he has used a compound word (shower door), and tonight he "gave directions" to me by using his finger to draw a path in the air to show me what he wanted me to do. There is a very long way to go, but in a race with no defined markers, he's definitely going in the right direction.

ask and...

sung to the tune of one of my favorite Garth Brooks' songs... "stuck in an airport in vegas, and all of the flights are delayed..." - it has been one long day. I'm trying to get home from a business day trip to Tuscon and the last leg just refuses to get me home. A delay of an hour, then we get on the plane only to get de-planed about 15 minutes later due to electrical problems. Now, I'm waiting for the replacement flight...

But, in the middle of all that fun, Staci made my day (month? year?) when she told me what happened at home today. After Grant got home from school, he came over to her, looked her straight in the eye and asked, "Daddy?"
"Sorry, Grant, Daddy's at work."

Later, he came over and asked her again!

He has never, ever done that before.

Daddy misses his family.

Trickery will get you everywhere

Yesterday, Grant lost his "Hollywood Video" right at the beginning of class. He completely understood the situation, but he did not continue to hit; he knew he'd crossed the boundary - that is great news in and of itself.

At the end of the day, Grant's teacher gives Staci his "Daily report" with the smiley or frowny face next to Hollywood video written at the top. Grant, of course, sees this transaction every day. This day, knowing that he's lost his prized trip, snuck the report out of his backpack prior to Staci picking him up. Then when it was time to leave, he tried to take another boy's report off of the teacher's desk to pass off as his own! Hmmm - they'll never notice, right? I love it!

Thinking ahead, thinking outside the box, thinking about what "others" will see - all totally skills that he showed off with this little trick.

Middle Ground

Today brought disappointing news on the chelation front. The latest test results show that the chelating process is not as effective as it was during the first 6 months. It seems he's hit the proverbial wall and now the question is, what do we do about it? We'll have the more formal review w/ the doc on Monday at which time I'll have plenty of questions for him, but in preparation the doc has suggested we look into nutrigenomics as the next step.

Nutrigenomics? Sounds like a mix between breakfast cereal and math class if you ask me.

A quick Google search yields 347,000 results. What? How could I have not heard of this before? Ok, let's narrow that down to only include autism results - we're down to 37,500. Hmm... I should be done looking through all that by the end of the year.

It doesn't take long, however, to see that this approach is, much like chelation, a no-middle-ground approach. You have the biomed camp which is 100% positive about it, and you have the neurodiversity crowd which treats it (and every biomed approach) as akin to child abuse.

I could read all those web pages and I don't think I'd find out much more than that last paragraph said. It's become a war out there between two extremely vocal sides, and there seems to be absolutely no middle ground. Well, here we are. We are in the middle. Who's got the real answers? Is it quackery? Is it a new effective, but as yet statistically unproven, approach? Is it cutting edge or a slippery slope?

Now for more black and white... Has the chelation helped? There is no doubt that Grant is in a much better place than he was when we started. His ability to communicate has increased greatly - both by written word and with his speech. We're still nowhere near conversation, but he is using his words so often now on his own and the list of words continues to grow. His drawing skills have really taken off, and even just in the few weeks he's taken that to a new level. But has it been the chelation? Or was it just school? Was it the diet? Was it the supplements? Nobody knows...

On the home front, the news today was tough as well. Staci and I see things and interpret things in such different ways, with today's news being a perfect example. Staci was heartbroken to hear the results today; she had such high hopes that Grant would be talking soon. I took it more in stride as par for the course; to me, it's just another approach to help get him talking and to help him understand the world around him. We're going to do whatever we can to help him live his life to the fullest extent possible, but the ebbs and flows along the way definitely take their toll. Regardless, we're going to ride it through and we're not going to fall into the ugliness found on either side of the biomed and neurodiversity crowds. It's about what's best for Grant, even when we have to make up the answers ourselves.