Apparently it's been over 8 years since my last post. Those 8 years were probably the hardest of my life, and yet I didn't feel the need to write about them here. 

But, let me tell you what happened yesterday. 

Grant could spend 24 hours a day searching for videos and pictures. We spend hours as he shows me browser tab after browser tab. Some of them, he can now read the titles to me. While most would not understand the words he says, I can understand most of them. It thrills me to see him sound the words out, making the attempt at sharing his thoughts. These pictures can be just about anything, but you can generally trace the root of the search to PBS Kids, Nick Jr, Baby Einstein, or Veggietales. 

So, back to last night. After a few hours on his laptop by himself, he brought it to the room where I was watching football. He sat right next to me and I knew he wanted to look at the pictures together. All good - any attempt he proactively makes at being social is a big win for me. After a few minutes, he glanced at me and put his left arm around me. Intentionally. 

Maybe he meant, "I care about you, Dad."

Or, maybe he meant, "This is what you do when you sit next to me, Dad, and it makes me feel important."

Or, maybe he meant something completely different.

No matter. He put his arm around me. His left hand directly on my left shoulder. And then he squeezed my shoulder. I knew then that he meant it - "I'm doing this on purpose, Dad."

In some way, he was saying  "I care" and "I like spending time with you, Dad". Can you really ask more from your 21-year-old, regardless of how many words they can say to you?

I write this to share my joy about this moment. But, more than that, I write this to share with you parents who may not believe your child will ever be capable of this moment. When the crying and screaming seemed like they would never stop. When you've reached your limit on embarrassing social situations. When you've lost so many friends that you can barely remember how to make a new one. When you're family split up out of nowhere, leaving you with an uncharted path before you. When you had given up on your son's ability to grow and improve and learn. 

And then, with no words, he walks in the room and puts his around you, squeezing your shoulder. 

Teenager

He's 13 now.

My daughter just posted a status on Facebook about him that brought tears to my eyes and prompted me to post my first update in a few years. Years? How could it possibly be years since my last post...

He's 13. A teenager. That turning point in life - for everybody else. That time when you look at your child's life and wonder what's next. What will the next few years hold? Will he be a lover or a fighter? Is he going to coast through school or really dig into something? Is he going to fall in love? No, none of those questions apply to him. No... the questions are different - will he ever answer "How was your day?" will he improve his verbal skills to a point where he can depend on them for communication? Will he realize he is transitioning into adulthood? Will he understand why he can't play in the balls at Chuck E Cheese any more?

We gave him a big three-wheeled bike for his birthday. After so many years of working with him to ride a two-wheeler, we listened to him. The two-wheeler is just too unstable for him; it's very uncomfortable and he gets no joy from riding it. We hope he'll be able to enjoy riding this bike, getting up a little speed and feeling the wind rush through his hair. We hope he'll be able to join the family in a bike ride? My back certainly won't miss running alongside him holding onto his bike!

He's 13 now, long past the age when he should be so happy to have some birthday balloons in his room. Bu he is... happy. And he's 13. He's growing up - the only way he knows how.

Changing jobs

Sitting across from Owen at the breakfast table today, he tells me "Dad, you need to get a real job. You can be a police man, a fire fighter, a mail man, or the President. What do you want to be?"

"Hmmm, I think I'll be the President."

"You don't want to be the President, that's a boring job. You just sit at a desk all day and talk to people. You should be a mail man, now that is a cool job!"

our little button

Tears don't come easy these days, I don't know why. When I was younger, and even not so many years ago, they came easy. Perhaps I've become too hard, too unfeeling, and the tears would break that shell. I suppose only those close to me can tell me if that's true. But tonight the tears came, and I wish the streaks down my face would scar, so that I would look in the mirror ever day and never forget the complete love, and the complete fear, I feel for my son tonight.

We watched Benjamin Button tonight, a beautiful movie full of fantasy, faith, and pain. About half way through, as Benjamin started his work on the tug boat, Grant walked in the darkened room and curled up in my lap. He's a lanky 10 year old now, no baby to be sure, but he curled up as if I should swaddle him in a blanket and lay his head in my folded arm. He laid there and put his arms around me, brimming with innocence and warmth. As we watched the movie, he looked up at me.
Daddy, he said.
Grant, I said.
This repeated about 20 times and every so often it was
Daddy - Grant, he said
Grant, I said.

And Benjamin Button grew older, while his body became younger. He struggled to reconcile his new youthful experiences and his old appearance. Others struggled to reconcile his old appearance with his youthful vigor and enthusiasm.

And Grant continued to lay in my lap, and look up at me, and say - Daddy.

And the tears came. He's our little button. He doesn't fit in his body. He struggles to reconcile his 10 year old youthful body with a mind that won't let him communicate his 10 year old thoughts. Others struggle to reconcile his youthful body, full of vigor and enthusiasm, with his inability to answer questions, his desire to shy away from those who could, or would, be his friends.

What I would give to know what other thoughts were behind "Daddy". The one word, over and over, as if he was spilling his heart to me, but every word came out the same.

And Benjamin Button became old, while his body was that of a young boy. His mind stopped working as it should, and he grew into dementia. He threw curious tantrums. He became sensitive to touch. His mind wandered and yet had moments of great clarity.

Grant fell asleep in my arms, his breath becoming slow and even as the peace of his dreams took over. In his dreams, there is no break between his mind and body, his thoughts become words, or his thoughts become ours. But in the morning, the 10 year old boy with the out-of-sync mind will wake up and take another crack at trying to make it all work. At trying to get his thoughts across. At trying to corral his attention. At trying to figure out what he should do with all these people. And he will continue to do this day after day.

And Benjamin died, his mind finally making the complete break from his body in which the two had never been in sync. But he died in the arms of the one he had loved, the one who had loved him.

And my tears continue to fall.

#10

Last week, I had tears on my pillow when I thought about today. Grant's 10th birthday - a cause for great celebration to be sure, but also a time for reflection. It doesn't take much thinking to bring on the emotions and so I try my best not too. After many years of rabid research, IEP trainings, and ongoing therapies, the last year or so has been a nearly conscious avoidance of such things. A little less knowledge, a little less hope, but a lot more acceptance.

So, back to #10. Nothing like throwing a party for your 10 yr old to face the fact that your 10 yr old has no friends, at least not in the same way we all have friends. At the same time, there is nothing like throwing a party for your 10 yr old to realize how incredibly blessed he is to have so many friends and family who love him to no end. But then when those incredible people ask 'what does he want' and you can't come up with more than a couple of things that would bring a smile to his face - well you just can't avoid the unavoidable.

But I'm really not a pessimistic, wishy-washy autism dad. My tears are only found on my pillow. My job is to be strong and lead the way for my family. And one of the true joys in my life is to see joy in Grant's life.

Today, #10, was a great joy in Grant's life.

Staci did a fantastic job planning the party. Where do you go, and how do you know he will like it? Her great idea was the local inflatable jump house place - a big room with cool inflatables. Who do you invite? His class - 10 great kids, but they don't really talk to each other. Our friends and their kids, and our family. Who knew how that would all come together, but Staci knew it would be great, and it was!

What a wonderful thing to see smiles and laughter from every kid, autistic and neurotypical. Playing together, playing alone. No uneasiness, no worry about how to act, just playing, just laughing, just friends. As he opened his presents, with the NT kids talking and the autistic kids looking around, he was grinning from ear to ear as he opened a few things he liked and threw the clothes boxes over his shoulder. And the cake... after years of not being able to eat 'real' cake, we splurged and let him eat real cake today. He savored every bite and will enjoy watching the video of it many times over.

Grant turned 10 today. He enjoyed every moment. He smiled. He laughed. Others enjoyed their time with him.

Tonight, there will be tears on my pillow, and they will be tears of joy.

Experiencing the impossible

When it happens, the impossible, we sit there shocked. Stunned, knowing the world will never be the same.

1969 - man walks on the moon
2004 - Red Sox win the World Series
2008 - Obama is elected President

But those pale... to December 2, 2008 when Grant pulled the hair cutting kit down from the top shelf in the closet, pulled a chair out from the table, put the plastic covering over his shoulders, and then ASKED FOR A HAIRCUT!

For years, giving Grant a haircut was pure torture, for everybody. The past 2 years, it's gotten better, but it has still always been a challenge to get him in the chair, to stay in the chair - UGH, it's just a huge struggle.

So for him to ask for a haircut, well, we have simply experienced the impossible. And just as with the other impossible things which our generation has experienced where life goes on the next day but 'different', so goes our lives here at home. That painful part of our history is gone, done, kaput. A bright future lies ahead!!

Can't do it

I tried, I really did. I've listened, I've thought. But McCain's response to this outrageous Bush/Paulson proposal has just illuminated what I was trying to ignore. I can't vote for McCain/Palin - as much as I want to. As much as I am deathly afraid of Obama becoming president.

There is only one respectable choice for president - Ron Paul. He will be my vote on November 4, regardless of his chances to win. He is the only candidate who has the right course charted for our country and the only one who will receive, with conscience, my vote.

Oh me of little faith

"I can't wait till Grant's 11th birthday", Owen told Staci while on the way to pick Grant up from school.

Staci pondered where he was going with that statement, wondering if he just forgot how old Grant was, or... "11th birthday?"

"Yeah, his 11th birthday is going to be so great. He's going to start talking on his 11th birthday. That's what I prayed to God and Jesus for. I want Grant to be able to talk just like us. He's going to talk like us on his 11th birthday."

And just like that, Owen let us know just how aware he is of Grant's autism and how much he loves his brother. And just like that, he reminded us to remember our dreams - don't give up Mommy and Daddy!

inches from tragedy

What might have happened - a thousand possibilities flood my mind. What might have happened... but it didn't. And tragedy, utter tragedy, was narrowly averted.

It was a morning like all the others, a school day like every other school day. The same schedule, the same routine. Get the kids breakfast, make the kids lunch, get myself ready, brush the kids hair, brush their teeth, get their shoes on, get them out the door. She takes Owen, I take Grant. So far so good.

At this point every day, I open the garage door and Grant goes to get the newspaper. While I back the car out, he gets the paper and then gets in the car. But today, I went to back the car out and felt a

THUMP

"oh God what was that!!!!" I could only think that the car was on top of him so I snapped it back in drive and sped forward. I didn't feel another thump on the way back. I flew out of the car only to hear him screaming and laying on the ground. Somehow, for some reason, he had sat on the driveway, his body hidden from my view but his legs stretched just far enough to be run over.

He was screaming and grabbing his leg - again a thousand thoughts flooded through me. Thank God he is alive! Please let his leg be OK! I felt along his leg and didn't feel an obvious break. I picked him and the leg didn't hang at an odd angle. A quick inspection showed I got just one of his legs and it wasn't bleeding but it was definitely roughed up.

I held him close, trying to take some of the pain and shock away. Of course he could tell me nothing. What happened? Why were you there? Where does it hurt? Can you feel your toes? Nothing, no answers - what madness this autism can be at times like this! I got him to put a little weight on his leg to see if he could walk - he had a heavy limp but it looked like he could put all of his weight on it. Whew! Ok, what next - gotta call Staci! Do we rush to the emergency room? What's the right thing to do?

I called Staci who was fortunately just down the street after dropping off Owen. She was back in seconds and held her composure amazingly well. Both of us were a bit frantic yet calm and we decided to call the pediatrician. The answering service paged him and he agreed to meet us right away. Unfortunately, their office had just moved and they are now about 30 minutes away! By now, Grant was becoming quite lethargic and was shivering. Staci covered him with a blanket and took off for the doctor.

The doc did not feel any major problems but said we needed an x-ray. Grant, get an x-ray? and in this condition? But, thankfully, he was amazingly calm in the x-ray room and didn't make a peep or move at all. The x-ray was negative - no breaks or fractures!!

A couple of feet either way and I might have killed him. I could have run over his belly, or his head, or crushed his foot or knee. But the tire went right over the calf area and caused only skin abrasions. I can't begin to imagine what could have been - life without Grant. For all the hardship, he brings a light into our lives that is unmatched in its brilliance. The love that we communicate with hugs, kisses, and eye contact can often say more than a million words.

And we still have him here with us, if only by the grace of God.

Tomorrow, and every day after that, we will be thankful. And the new rule for pulling the car out is - don't drive until you can see the whites of their eyes.

Back and forth

Even during this hard time after learning about my brother's passing, the lights in my life become ever so much brighter and clearer.

Tonight, while over at my in-laws for dinner, Grant brought me out to the swing set, as he often does. As I've written before, he LOVES to swing. The two of us have spent hundreds of hours with me pushing him on the swing and over the past 6+ years I have been trying to teach him how to swing himself. Legs out, Legs in. Back and forth. Watch me do it. Watch Cassidy do it. My hand on his leg, showing him how. In all that time, I never saw one time where he even began to do it on his own. He loves to swing, and he loves to have me push him. I think it's just been that simple.

But tonight - that changed. The crazy thing is, I'm crying as I write this and I wasn't during my previous post about my brother. Tonight, Grant brought me out to the swing. He sat down, pushed back with his feet and swung forward. At the apex of the swing, he swung his legs back and started to gain momentum. As he swung forward, he stretched his legs straight out and began swinging, back and forth, back and forth, all on his own. I stood there and cheered him on, my mouth gaping open. He continued, smiling and enjoying himself as if he's done this every day of his life.

On this day when I ponder how my brother could end his own future, I marvel at my son's growth and the great joy he will continue to bring into ours own future.

Shock and Awe

The past few days have been a roller coaster for myself and my family. Last night, I found out that my younger brother committed suicide earlier that day. We had all been in fear of this for some time, although there is nothing to prepare you for hearing those words.

My brother was a peaceful soul, at least to everyone else but himself. As I've heard from many people over the past few days, some of which I have never met, he was one of the nicest people around. He was not one to judge anybody, he would talk to anybody and never put them down. But to himself, he was forever in battle. From late in grade school, he just had zero confidence in himself, had very little image of himself, and was generally unable to see what others saw in him. When did it start, and where did it come from? I'll never know, and I'll never understand it. The only place he felt he could escape his world was in drugs and booze. It was a constant battle, one that he knew he had to win, and one that I'm sure he felt he would always lose.

The stories of the past 20 years could fill volumes, but needless to say many friends and family worked with him and tried to help him. The therapies, the hospitals. Moving away, moving home. Getting a job, losing a job. And, yesterday, that was it.

As I try to get some kind of handle on it, as I hear from his friends in their heartbroken state, as I hear from family all over the country, I keep coming back to our youth. Up until about 5th grade, we were probably as close as 2 brothers could be. Thinking about that astonishes me because I had forgotten how close we were - that relationship has changed so much over the years.

He was the kid who was up at 4am on Christmas morning - there was nothing any of us could to hold him down on that one. My parents would try and buy a little time, but there was no stopping him. He was going to open those presents whether we all got up or not. Thinking back, I can't remember him being so excited about anything more than those Christmas mornings.

He was fantastic at figuring out how things worked. I remember when he took apart his Big Trak - what did you do? Here was probably the coolest toy either of us had ever gotten and he was taking it apart! But he had to know, even if it meant he wouldn't get the enjoyment of playing with it again.

He loved camping and fishing; he was definitely an outdoors guy. My parents fostered this love and I think those years where we went camping in the trailer and fished at various lakes were truly some of the happiest of his life.

My own memories of playing with him in our youth are flooding back as I write this, but I think think I'll save those for another post.

Saturday is the memorial for him. I welcome your thoughts and prayers during that time, especially as our already-fractured family comes together to remember him.

Humming a tune

So much has happened since my last post, I couldn't begin to summarize it. So, I won't :)

Last night, I heard Grant hum for the first time. A real tune, in his humming voice. While we were watching Toy Story before bed, he started humming to the early part of the Toy Story music. It took me a few minutes to realize that he was actually humming along to the notes because it caught me so completely by surprise. As he went along, I start catching the tune, and he ended perfectly on the very last note. Wow!

Today in the car, Staci heard him humming something else. Music has, for so long, been either a terror, a confusion, or an annoyance to him. To hear him reach out and embrace it on his own is simply unbelievable.

big bites

I've been really quiet here, and I don't really have one good reason for it. We started a new biomed program for Grant about 6 weeks ago, given that's how this blog started, you'd think I'd be sharing the experience. Grant has been doing fantastically well on his bike, given how much I've written about that, you'd think I'd be sharing the experience. Grant has been talking more, and has been communicating well at school with his Alphasmart, again you'd think I'd be sharing the experience. Why? I suppose it's just been a private time for some reason. I sit down to write and nothing comes out. I've also been a bit autismed-out; I haven't been keeping up on the news and I haven't been keeping up with peoples lives via their blogs.

But tonight, Grant ate all of his meat. HA - that is such a funny sentence to write. Seriously though, my hands were clapping in the air at the dinner table and we were cheering. When we started on this diet almost 2 years ago, we knew it would be tough but we were genuinely concerned about what he would eat. We were one of those "he'll never eat that" parents. But he has, and tonight, he did.

Early on, it was tiny, tiny pieces of chicken. He would gag. He would fight. He would cry. But, he didn't get any of the stuff he actually wanted (fruit, bread, etc) until he took some bites. Even with the tiniest of bites, he would gag. He just had no experience with that texture and he was really upset about having to eat it. Time, though, is an amazing ally. Night after night, he had to take bites. Gradually, he tried new types of meat and stopped gagging. Bigger and bigger bites, less and less struggle. Tonight, we had BBQ'd turkey burgers and he ate 1/2 of a burger - every single piece that was on his plate! Big bites, no problems.

I should mention that Grant doesn't have any motor issues with regards to food. It's purely a taste, texture, smell, sensation, experience - like it is for all of us, just more so.

It can be done. Don't give up if it seems impossible. Tiny bites with no options. Every time, be consistent and don't give in. You'll all be better off for it.

Confluence of families

We did it, and it was a complete success! As previously advertised, we held our first respite night for special needs family at our church on Friday night. The numbers (32 kids, 19 families, and over 60 volunteers!) are astounding to me, but the night... it wasn't so much a life-altering night, it was a life-defining night.

Rather than review the event and evening, allow me to share a few moments.

Our church was behind this event a million percent, and I can even begin to say how humbled I am by that. Financially, we were able to provide each parent/couple with a gift bag containing a $25 dinner gift card and a $10 ice cream gift card. Socially, we were able to provide each parent/couple with time off - 3 hours on their own w/ no kids. However, even more exciting to me was the joining together of our community - there were at least 4 other churches represented and...

Our very first arrival was a "walk-in" - they had not pre-registered and had only that day heard about the event from their OT, one of our volunteers. A dad, two older NT boys, and their daughter with CP. The dad was able to take the boys out to the movies for a boys' night out. The young lady enjoyed her evening with her buddies, an older couple who wheeled her around from event to event throughout the evening.

Our own Club members were some of the ones we were most concerned about from a behavior and escaping standpoint. All of them did incredibly well with their buddies, although I'm sure the adults might still be sleeping. :)

The surprise, and possibly MVP, of the night, was Joe. From a few weeks ago, mentioning "I'll be there if you need me" to becoming the impromptu MC ringleader last night. At first, he was hanging out by the inflatable Twister and there wasn't much going on there, I sensed that he was wondering if he should really be there. But soon, there were more and more kids around him. He found the microphone and soon kids were singing songs into the microphone. He heard a young baby crying and became super-Dad - after walking around and soothing the baby for about 10 minutes, he finally fell asleep peacefully on Joe's shoulder. Many people remarked to me afterwards that Joe was such an example of what the night meant to them - wow!

The buddies, as a whole, impressed me to no end. At no time was anybody frustrated, nobody complained, and we had no issues. It was just about loving the kids last night and I just kept looking around thinking 'if only this kind of love could spread infectiously throughout the community, day to day, hour to hour'.

We had kids with any number of "disabilities". We had their NT siblings ready for a good time in the gym. We had young volunteers. We had old volunteers. We had Christians and we had non-Christians. Last night, they all came together. There were no differences. Young played with old. Child played with child. There were no walls, there was no separation. There was only, for 3 hours on a Friday evening, love.

It's about time

Here in sunny California, maybe it just seems like it has been raining all year. Last week was no different. But it wasn't going to stop us.

Saturday, I had one goal - Owen was going to ride his bike on two wheels by the end of the weekend. We've been playing at it since Christmas when he got his new bike. I had thought he would be one of those kids who hopped on and took off - not to be. The funny thing is - it's not lack of skill or coordination and it's not lack of desire.

It's just Owen being stubborn. Saturday was a perfect example. I tried to get him all pumped up - just me and you Owen! you'll be a big boy on two wheels! this is our project! You know what he came back with? Dad, I just want to ride my scooter today.

I didn't give up though. I was watching the weather and I could tell we were going to have a window, maybe a couple of hours, and that would be it. I kept working him until I finally had him convinced it was his idea - then he was excited! We got out the door and onto his bike - the clouds were there and the window was closing. My little stubborn guy pulled every stunt, but I stayed patient (mostly) and worked at coming up with motivating ideas. He finally seemed to respond to '5 laps around the schoolyard and then 5 minutes on the playground'. Before long he didn't even know I had let go of the bar on the back of his bike, he did a full lap by himself and then he wanted to ride over to the park. He rode all the way over with me running behind him, and after the park, he rode all the way home. He did it! He's on two wheels by himself now - the only things left are mastering starting and stopping. It rained the rest of the weekend and we never got another chance to go out, but he did it!

Grant has been doing fantastic on his bike as well. I didn't take him out this weekend so that I could concentrate on Owen, but Grant has been riding on his own for past 4-5 weeks (with training wheels). I can run ahead of him, or behind him, and he no longer has that need for me to be right there next to him. He is focusing. He's keeping his feet moving. He's staying on the path. I am so excited by this - everytime I think about it, the tears well up in the corners of my eyes. He has come SO far and the progress these past several weeks gives me so much hope.

I was telling Cassidy that with Owen now riding on two wheels, I just might be able to get on my own bike again. Her jaw dropped when I told her it has been 6 years (years!) since I've been able to ride my bike with the kids. Between teaching Grant how to ride, and then most recently getting Owen going on 2 wheels, I've been running alongside a bike for a very, very long time now. The dream - going on a family bike ride - is within my sights. Even 4 months ago, this was still a pipe dream. But now, I know, by summer this is going to be reality. Reality is good, and it's about time.

Just here to help

(has it really been almost a month since my last post? inexcusable...)

First, let me invite everybody (well, everybody who will be in the Bay Area on Feb. 29) to our first Club Kangaroo respite event. All special needs kids and their siblings are invited - we will all be having fun while the parents get to go out on a Friday night all by themselves. Even if you can't come, please do forward this to anybody you know who can use it. It may be easier to just send them this link: http://www.bethel.org/ChildrensMinistries_ClubKangaroo.htm



Today was a great day in Club K - in the way that great days are often the hardest days. There have been many Sundays where we just have a few kids, or even just our own kids, and it's very easy. But even though we often have a good time on those days, we go home feeling like we really didn't do our job.

Today, we did our job.

We had a new boy today; we were all excited about it since his mom had prepared us 'for the worst'. He's on the spectrum and apparently has some of the same issues that our other boy members have - anger, violence, no patience, very little attention span, etc. His mom hung out in the class for the first hour, but we encouraged her to leave him in the 2nd hour. It took a while but she snuck out while he was occupied and he did great! We had 2 other boys with powder keg personalities, so it was 90 minutes that was harder on us than any normal work day. We've recently instituted a very scheduled approach to the class and it has been so helpful. The kids know what to expect and when things are going to change; not only that, but they know when a particular activity is going to end as well. We've been so much more productive this way and it makes it much easier on all of us as well. Cassidy and a few others did a puppet show on David and Goliath - little did they know I had prepared all of the kids with foam balls so when it was time to throw the rocks at Goliath, all of the kids threw the balls! Although there was a lot going on the entire time, everybody did really good and I am just so impressed with the team and with the kids.

Although we love playing with the kids, and it is just incredibly satisfying to see the progress they have made over time, it is even more exciting to see the parents (single, married, grandparents, and every combination you can think of) get a couple of hours of 'me time' to meet people, grow friendships, learn, and hopefully start the week fresh and rested. Hopefully we can do a little more of the same with our respite event.

Of Holland and the Hmong

I've been back in the reading groove since Christmas, it's a good groove to have but it certainly does eat up time. In my life, there is just enough extra time each day to read, or write, but almost never both. I'm stealing this particular moment as I just finished a book last night, the kids are upstairs playing, and today is a holiday.

The groove started with Wicked, not exactly holiday-fare, but an engrossing story nonetheless. If I had to boil the theme down to one word, it would be 'perception'. I came to the book with my perceptions of the story and its characters long ingrained, and yet as I learned 'more' about the "witch" and her background, my perception became vague. Are the evil ones really evil? If we knew more, would we hate as much? How real are our perceptions of "reality"?

Next up was The Speed of Dark, set in the very near future, an autistic man must make the choice of is life. Like the best science fiction, the author takes threads of current reality and weaves them into a vibrant, new world, instantly believable and horrifying. With much of the story written in 1st person by an autistic man, I was constantly drawn into the world of my own son. If only he could read this and share his thoughts about it with me!
Again, the theme of 'perception' runs through this novel - what do the NT adults really think about the autistic community? what does it really mean to 'remove' autism from the mind? who is the 'real' person?

Lastly, and the one I finished at about 1:30 am this morning, was The Spirit Catches You and You Fall Down. Talk about perception! The true story of a Hmong family and their severely epileptic daughter, it is not so much about her illness or even the quest to save her, it is about humanity and how we see each other. Although captivating from beginning to end, I often found myself drifting off, wondering about my perceptions of people with different colors, different eyes, different clothes, and certainly of different cultures. Much like the other two books, this book brings to the light the struggle for those who are "different". In their "difference", I found so many similarities between the Hmong and my own son. The way they see the world, what they hear, what they see, how they react to the world - it is almost entirely different from my own reality. All the answers are different, yet the questions are all the same. Does it really matter that we see the world differently and react to things differently? Can we have a common ground? Does it even matter if we have common ground? Can we move forward together when we see different paths? Who needs to "change"?

Next up, A Thousand Splendid Suns... along with 3 more from Christmas right behind it. The writing will be slow, but just writing these words today has reminded me of so many things I've wanted to write about in the past month. We'll see which groove wins out...

Our little aardvark

I'm sitting in a Children's ministry meeting at church tonight when I get a call from Cassidy. It wasn't a great time to break away in the meeting so I let it go to voicemail. A few seconds later, I get a text message - call me Dad, it's Grant.

Uh-oh. I step out and my mind is racing as to what might have happened at home.

When I call home, instead of Cassidy's frightened voice, I can see her smile right through the phone. "Dad, you'll never guess what Grant did tonight!".

"Um, I hope it's a good thing?"

"Yeah. He kept asking us for something but we couldn't understand him. It sound like "aaa" but we couldn't tell. He got really frustrated, but then he came downstairs and got on the computer. He got on pbskids.org, clicked on Arthur and then spelled out "Arthur" on his Magna Doodle and brought it to me. He wanted the little Arthur play figure so he could put in his play house."

I think Cassidy could see my smile through the phone too. Now THAT is communication! Great job, Grant!

Coagulation Breakdown

The other night, Grant cut his foot pretty good, a nice gash that was just begging to be cleaned up and covered up with a band-aid.

Uh, not so fast.

Grant is averse to band-aids. No, averse is much too nice. Terrified? Stricken? And it's really not just band-aids, it's any sticker or unexpected covering of the skin. But that night, he needed one. As soon as I saw the cut, I knew were in for a stand-off. My first mistake was trying one at all, I figured it had been at least a year since we tried so maybe he's softened his stance a little. See that perforation of my ear drum? There's your stance...

I tried a wet cloth, but he would have none of it. Screaming. Crying. Terror. How do you keep blood from getting everywhere when you can't cover the cut? I still don't know, but after a couple of "kiss the boo boos", some quick dabs of the cloth, and more of just my hand covering his foot - it stopped. He fell asleep after wearing himself out from the crying. Fortunately, the clotting has held up and he has not re-opened it.

Not long after, it struck me that he has not had a band-aid in at least 5 years. How is that possible!? Owen goes through about 100 a month. We all need one at some point, right? But 5 years!? What will we do when he finally gives in to the inevitable and really opens one up? I think we better start preparing for that - any and all ideas are welcome...

Patience

Grant, there is long-term patience and short-term patience, and tonight evidently I have neither.

I am so sorry that I lost my patience with you tonight. I know it's tough for you to fall asleep on your own and you do best when you've got a warm body next to you. Tonight, my patience gave out after you had gotten up several times and then couldn't keep the light off. I jumped up and let you know how frustrated I was. I went downstairs to let off steam so I'm not sure when you fell asleep. Hopefully it was soon, but I'm sorry. Your daddy tries to understand where you are coming from but as you know, many times I fail and tonight was one of those times.

As for long-term, one of the most frustrating things about your diet and supplements is the length of time it takes to see what works and what doesn't. To truly see what an addition or subtraction does, it can take days, weeks, or months. You don't really know this, but we had some more tests done to help determine the best supplements for your body. While we were waiting for the results, we let some of the old supplements run out since they cost some money and we didn't want to spend that money if it wasn't necessary. But, as we did that, we noticed some changes in you - you weren't responding as much to us and the "fog" seemed to be thickening again. We bought all the supplements and got back to the every night routine and it has really made a positive difference - the supplements clearly make a difference in your life.

Now, as you are very aware, we've let you eat pizza again. It has been so fun to watch you eat it! We are testing a few of the foods that have been restricted from you for over a year now, and the first is dairy. You seem to be doing well, but one of the issues has been your trouble getting to sleep. It seems like we've gone back to the way it was a few years ago when you HAD to have someone next to you to fall asleep. Is it the dairy? Or, is it because we were out Friday and Saturday night and you didn't get your supplements? Or is it totally unrelated? I can only imagine how frustrating it must be for you to feel changes in your body and not be able to tell us about them. I wish we could just change everything in a week and be done with it, but unfortunately it just takes a lot of time to see what things are affecting you. Tonight, I don't have the patience to plan that out, to wait for the results.

I'm sorry that I'm having such a hard time being patient, Grant, but I sure am glad you are patient with me!