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.

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...

Netflix loves me

We've got the cheapest Netflix plan - 2 a month, and we rarely use them both. We used to have the 2-at-a-time plan but then we had to go with a monthly plan at Hollywood Video since that is Grant's major reward for behavior at school. It seems like every time we send a movie back to Netflix, we forget to check our queue and update it with something we want to see so the next movie seems to always be a surprise. It usually ends up being something one of us added a year or so ago and had since completely forgotten about. The movie I watched tonight, the one that had been collecting dust for at least 3 weeks, was one of those.

Fortunately, Netflix smiled on me this time, leaving The Astronaut Farmer in our mailbox for viewing at our discretion. I loved it. I'm such a sap for feel-good, dream-big, change-the-world, strong-family, slightly-outrageous-plot movies. This one had all of that and more and, like this post from a few weeks ago, it had me pondering if I still have dreams to live out. Sure, I have dreams for my family, but are they big enough? How sad is it though that a couple of hours later I still don't have any inkling of my dream? Assuming my final age is anywhere near the average of 77, I'm a little over half way there - when I'm just about to shut my eyes for the last time, what is it that I will look back on and say "I did it"?

What's your big dream or goal? Are you on track to accomplish it?

Before I start building a rocket ship in my backyard I better go check my Netflix queue to make sure the next movie doesn't make me think - any suggestions?

Generations

22 1/2 years ago, I ate a bowl of Frosted Flakes and stayed home. I wasn't feeling well, I said. The next day, it was another excuse and then I just stopped going to football practice. I was small and slow so I wouldn't have made the team anyway, I said. I was 99 lbs and the minimum was 100 lbs, I said. The next year, I said I'd never make it on the team because I hadn't played the year before. And so it went for 4 years; I never played although playing football was my biggest dream. I never even watched a game.

On Friday night, we, along with most of the town, watched the two local high schools go at it in the first round of the CCS playoffs. Our nephew was promoted from JV for the playoffs and we were so proud to see him out on the field. Prior to his freshman year, he had never played football, but he decided he wanted to play and 2 years later he's a star on defense. Earlier this year he had a severe injury completed unrelated to football; most of us were very doubtful that he would play this year, if ever again. But here he is, playing for the varsity after playing every game this year.

Today, we moved Staci's grandparents into an assisted-living home. This move is necessary and it's going to be a much better situation for them. Over the past several years, they've experienced the typical maladies of the typical 80+ year old but they haven't fought it. They haven't worked to improve their lives, they have existed. Although it was quite sad to see this change in their lives, it was even harder to wonder how their lives would be better off if they had exercised or socialized more.

I'm sure their "decision" was much like mine that day, just one bad excuse in an otherwise make-all-the-right-decisions kind of day. Fear of failure, fear of success, or just fear of pain - it doesn't matter which one, it just matters that we gave into it and it kept us from accomplishing our goals and dreams. As I realize these similariites and compare them to the joy of seeing our nephew push past this same fear and accomplish so much, I am going to some serious dreaming and goal-setting over the next few days and weeks and promise that nothing is going to keep myself or my family from living life to the fullest. If I do one day end up living in a room where assistance is required to help me live, it will only be because I have lived every second of every day to its fullest and my body is simply unable to keep up with my dreams.

Pool School

So this is what post #100 feels like. This number has been preventing me from posting for several days; I wanted #100 to be cool, special, unique but I couldn't/wouldn't make the time for it. Yeesh - what a goof I am. I started this blog to write about Grant's progress so it is only fitting that #100 focus on Grant.

It's been roasting here for the past week - in the triple digits all of last week so we've practically been living in the pool. I never cease to be amazed at how 'at home' Grant is in the pool. When he is in the water, it's as if the world around him settles down and he can see and feel his environment in such a calming way.

The 'overload signs' are non-existent in the pool - the pressure clapping, the fingers behind his ears, the rote 'babbling' of lines from his favorite shows, the list goes on and on.

The 'calm signs' are a joy to behold - big smiles, eagerness for participating in pool activities together, feeling at ease around other kids, no hitting, laughter. I'm smiling just writing this list.

He often will ask me to go under water with him; it's almost like he's saying 'Come, see my world, Dad'. Under water, life is quiet - very quiet. Any sounds from up above are just muffled vibrations. There are no bright lights - indeed, even sight is muffled. While my 5 senses are being deprived, my proprioceptive sense chimes in with 'all is well' - my body feels wrapped tight with water and nothing is poking, prodding, tickling my skin. We look at each other and laugh before we shoot back to the top for some air.

If only we could bring some part of this into the rest of his daily life. If only he could tell us what is it in the 'outside' world that brings him agitation. Maybe it's time to bring the speech therapists and his teachers over each day and we'll have school in the pool!! Imagine the advancements he would make!

who

I ran across this photo collection site, Square America, and quickly became lost in it. People, places, stories - all unknown. Fascinating.

Then, I ran across this one.

What do you think? It looks like an institution to me, sometime between the 30s and 50s. I look at the faces. I'm reminded of a thought that often strikes me, what would Grant's life have been like if he had been born 30 years ago? 50? 80? 100? Would we as his parents have had the courage to fight against the societal norm and keep him at home? Or would we have shipped him off to some place like this when it became clear that "he was not like the rest of us"?

What's going through the minds of all those men? What could there lives have been like if they lived today?