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!