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.

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.

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!

my son, the neurodiversitist

Overheard at the dinner table tonight...

Staci, Owen, and Cassidy were talking about a converstaion from earlier in the afternoon about wishes. Staci asked Owen, "Do you remember my wish?"

"Hmmm... no?"

"My wish was that Grant would learn to talk."

"It's ok, Mom. Grant has his own language! He's ok." Smiles all around the table, and then he continued in a whisper, "Mom, I changed my wish."

"You did?"

He leans into her ear and whispers, "I love you mom."

Melting ensued.

am I going to die?

For whatever reason, Owen has had a few stys in his lower eye lid over the years. Usually, they go away with either a hot compress or some ointment. However, for the past few months, what appeared to be a sty got a little too big and we had to get it checked out.

The doc's response - hmmm, I'm not sure what that is, better get it checked by a specialist. Well, that's not what we wanted to hear!

So, a few weeks back we took him to a pediatric ophthalmologist (what a mouthful that is!) to get it checked out. He was fantastic in the office, pretty amazing really. He sat right up in the big chair, put his face in the "eye checking machine" and did everything the doc told him to. The diagnosis? Whew, nothing serious. She said it is a sty that has burst, then another grew on top of it, and maybe even a 3rd time. Unfortunately though, the only way to get rid of it is to cut it out.

Cut? In his eye? And, to top it off, the doc said that we would need 2 strong people who are not afraid of blood to hold him still while she works on his eye.

Umm.. Ok. Hmmm.. Can't wait for that.

Tuesday was the big day. Cut day. We tried our best to prepare him but of course he really had no idea what was in store for him. Staci was very prepared; she had a new stuffed gorilla for him to hold during the procedure and a transformer for after the procedure was done. Once again, he hopped right in the chair and allowed the doc to poke and prod. But then it was time to start.

Staci lay in the reclined chair and wrapped her arms and legs around Owen to hold his body still. I was behind him and in charge of holding his head still.

As soon as the disinfectant drops reached his eyes, it was all over. Tears. Screams. Struggle. And now, time for the sharp instruments. With his head firmly in my hands, the doc inserted a needle in his lower eye lid to numb it. The sight of his eyelid puffing full of liquid was a sight I will never forget.

While he is still screaming, the doc pulls his eyelid back in a tool to hold it in place. She then whips out a small scalpel/knife and starts lancing the sty. It takes a few cuts to completely remove it, but while this is happening, Owen is getting much more concerned. "Will I ever see again?" "Please make her stop!"

"Am I going to die?"

From a 5 year old? We all stopped and looked at him when he popped this line out. Where could he possibly have gotten this fear? This concept? I'm still stunned by the depth of his fear at that moment and the unspoken thoughts that must have been rushing through his head. As the doc applied a bandage over his eye, he saw a little of the blood and became even more concerned about losing his sight. In a manner of just seconds, he went from fighting the bandage to not wanting to take it off. He was so scared that taking it off would cause more pain or would cause a problem with this eye.

As the day went on, he was very comfortable with his bandage. Grant was quite curious about it but did not try to remove it from Owen's face. Finally, Staci was able to remove the bandage at bath time; he finally understood that it was ok to remove it and he was tired enough at that point that he didn't give up a fight.

Fortunately, there have been no complications and there have been no more concerns about death. But what an adventure into the mind of a 5 year old!

running in cycles

It seems that when I go a few too many days without a post it's because there's just a bit too much going on in life and I can't seem to force myself to whittle it all down to one (seemingly) coherent theme. The last few weeks have certainly been one of those periods but since I need to narrow it all down, the theme has to be 'back to school'.

This is definitely the first year, and probably the last, when all 3 kids were actually looking forward to school. Cassidy is starting Junior High (7th) and she was really looking forward to the new classes, the new teachers, the new school, etc. Grant really enjoys school now, although probably for the opposite reason - it is now very familiar to him. He's been at the same school for 5 (!) years now and he still has 3 to go (after this one). He's in the 3rd grade (SDC) and is showing more and more signs of actually wanting to learn. Owen started Kindergarten this year. What was previously "Cassidy's school" is now "Owen's school". He was also very excited about going to his new school; he feels like a "big boy".

Of course, this means that we have 3 different schools, 3 different start times, and 3 different end times. Whee. The toughest part is that Grant's class gets out 5 minutes before Owen's class, and there's no way Staci can pick up Grant and get over to Owen's school in 5 minutes. Fortunately, Grant's teacher is very understanding and she picks him up 5-10 minutes early. I still get to bring Grant to school which, while it has not always been easy, I have always enjoyed. Since I can't just drop him off in front of the school like NT kids, I get to walk him into class and hang out for a little bit. Over the years, this has been a great opportunity to build a rapport with his teachers and to have a quick exchange of ideas when there is a need to do so. It's too bad we can't do that with the other 2 - it really seems "right" to know the teachers so well and to know the other kids and their parents.

Owen's first day was a bit worrisome since he can have a bit of a frustration/anger issue at times. When he gets really frustrated he can "light it up" with the best of them. However, his morning started out great and he was all smiles walking in the room. When his teacher noticed he had the same lunch box as another boy, she started writing his name on the outside. In ink. Right -on-top-of-Spiderman. Uh-oh, big mistake. Owen was NOT happy about that. Evidently it took him a while to get out of that "mood" but he hung in there and finished strong. Today (the 2nd day) was much better.

Although Cassidy was looking forward to 7th grade, the big bummer was that none of her best friends were in ANY of her classes! Although she says that she hasn't really talked to any new people, I'm not buying it. She'd be complaining if that were really true. By far, the biggest change (and drawback) to 7th grade is the lack of recess and a shorter lunch period. Welcome to the real world, pal!

Finally, the last few days I have been desperate to glean information from each of them about their day. Well, I always ask Grant about his day even though I've never gotten any sort of answer. Maybe someday. But, Cassidy and Owen are more than capable of describing every minute of their day to me - what's the problem!? All I get is "it was good" or "nothing happened". C'mon, I work in an office all day, I need some stories about this other world you are living in kids! So, I've pretty much given up on asking and have resorted to other methods. I either ask stupid questions which require them to respond with a "real" explanation, or I tell them some story from my school days so that they will want to talk about their own. Any other ideas are MORE than welcome!

Ok, boring post is over. My next post is #100!

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.

A month of birthdays

Thursday is the official start to "birthday month" at our house, when each of the 3 kids turns over the next number in the odometer. The unofficial method of celebration is to give a "big" party for the important numbers - whatever that means. So, Owen gets the big party later this month for his 5th; we're still in the early planning stages on that one. Cassidy will have some friends over for swimming/slumbering for her 12th (next year she gets a "big" party). And, Thursday, Grant turns 8.

Grant loves - LOVES - birthdays. He loves the cake. He loves candles. He loves presents. He loves being the birthday boy. He loves watching others celebrate their birthday. Unfortunately, with his diet, regular cake is a bit out of the question. So, hopefully, he will enjoy our best effort at a birthday cake for him - it will look like a cake, it will slice like a cake, will it taste like a cake?

In full disclosure mode, we haven't yet decided what to get Grant. What do you get the boy who asks for nothing? I'm always tempted to go for the "educational" toys - not only will they be fun, he will learn too! Hmm, how many of those toys have actually panned out? Not many. Nah, I think it's best to just get him something he will enjoy. Let's see, what does he enjoy?
gameboy/gamecube games
teletubbies/dora/blues clues/toy story - you get the idea
swimming
trampolines
swings


Now, how do we translate that into gifts by Thursday? Help?!

Her story

Cassidy did a fantastic job on Sunday, telling her story. I included the script in Saturday's post, but now I have video: go here and view "Living A Life That Matters" Part 2 March 25, 2007.

I think (know) that we expect a little more out of her and this was a good example. She definitely did not want to stand up in front of a couple of thousand people and talk and there were times over the past few weeks when we thought for sure she was going to dig her heels in and refuse to do it. I thought we were ok though, until Sunday morning actually arrived. She was really nervous on the way to church, and when she started the first time during a sound check, she broke down and cried. It was a little too much to hold the microphone, be up there on the platform by herself, and fear took over. After some quick consoling and a firm refusal of her attempts to get out of it, we decided for me to be up there with her and hold the microphone.

In the last 5 minutes before her first delivery, she was all tears. I thought for sure I was going to be going up there and reading it myself. But when it was our turn, her tears dried up and her maturity took over. She did a fantastic job, reading very clearly and with emotion. For the 2nd service, her fears were completely gone and it was as if she does it every day of her life.

We are so proud of her for doing this for her brother, her family, and her church. There were many people touched by her story on Sunday, and there will continue to be many more over the years.

Countdown to Sunday

It's been quite a week... we gutted the kitchen just over a week ago in preparation for a remodel. No appliances, no counters, no pantry... ahhh... might as well be living in a hotel room. My reputation in the family is that I become a bear when the house is turned upside down, but I think I've handled this pretty well - only a couple of "lose control" moments. But, in the midst of the whirlwind, we got a call from our church asking if Cassidy could tell her story during the Sunday services this coming Sunday. Pastor Allen is starting a series on "people making a difference with their lives" and Cassidy is the first "example". Wow! Humbling, exciting, inspiring - although it's mostly just "scary" for her. Her first instinct was "no way" as she thought of talking to 1000 people, but as we talked about it, she understood her role and she's going for it on Sunday.

If you are in San Jose, come on by - church is at 9:15 and 11. If not, here is the transcript we wrote up together. Tears fell from my eyes many times remembering that first year after "autism" entered our vocabulary, but also thinking about how Grant's life has truly changed the course of our lives.


My name is Cassidy, and this is a window into my life:
Eight years ago when my mom and dad told me that I was finally going to have a little brother, I was really excited, but I was also scared. I remember dreaming about all the things we would do together; how we would play all day and how I would never be bored. I can remember holding Grant when he was just a baby, and I can remember teaching him how to play ball and all kinds of other fun stuff.
When Grant was 2 years old though, he started to change. He didn’t play anymore, he didn’t talk anymore, and he wouldn’t even look at us. I didn’t really know what to do with him anymore or how to be a big sister to him. And then about a year later, I remember coming down the stairs and seeing my mom crying very hard with my Grandma. I don’t think I had ever seen anyone cry so hard. I kept asking her what was wrong, and then she told me he was diagnosed with autism. I didn’t even know what “diagnosed” meant; I thought for sure he was going to die.

I felt so sad. I couldn’t understand what was happening to him. Other little kids could talk to me and play with me, but not him. I wondered why he wouldn’t come play with us; we tried to get him to come but he always wanted to go off by himself. We would pray every night for his healing, that he would talk again and that he would look at us with his big brown eyes. Even if he would just say my name.

My mom and dad tried a lot of therapies with him and I tried to help with each one. We used to have teachers from his school come to our house to work with him after school; I would watch and learn what they were doing so I could hopefully help Grant too.
I figured there had to be another way I could help. I started to make little things and I tried to sell them in front of our house. I would only make like 50 cents or a dollar for a whole day, but I kept on trying to make new things. When my mom saw me making bracelets out of plastic beads, she took me to the store to buy real beads. Once I started making real bracelets, people started buying them; we kept joking that my dad could quit his job and we would start a bracelet business.

But, I wanted to help Grant. We had just done a walk to raise money for Cure Autism Now, and I realized that I could raise a lot of money to help Grant and other kids. So, I started my own business making bracelets that I could sell to raise money. Since the beginning of my business, I’ve been able to raise over $5000, and each year it just keeps growing bigger and bigger.

Grant has improved a lot since I first heard my mom say “diagnosed with autism”. He can sing Happy Birthday, he can write his name, he can read a couple of hundred words. He just started figuring out how to make animal sounds. He can even say my name, Cassidy. It’s still really hard sometimes, but it’s also great when he learns something new.

There are a lot of questions that people ask, like why did God allow Grant to be autistic? I really don’t know why, but I do know God has a plan for all of us, and I’m a part of it. He will use Grant and our family to help others. I believe that God loves us and has trusted my family with this opportunity to make a difference. I believe and trust in God with all my heart, and I’m thankful that I can have a part in trying to help Grant and other kids with autism.

Counting sheep

Staci is out at bunco tonight, so it's Daddy's night with the kids. While things usually go pretty smoothly, it's always interesting trying to get 3 kids into bed at the same time. Owen and Grant are asleep now, while Cassidy is... well... I'll get to that in a minute.

Owen (4) is now the easiest - a book, "medicine and water" (his vitamin), and prayers equal an instant snooze attack. Owen is all business when it comes to sleep - if his head is on the pillow, it's usually just minutes before he's out cold to the world.

Grant (7) is, and always has been, a good sleeper. Getting him to sleep is an entirely different story. When he was 2 and his world started to change, one of the most obvious symptoms (now) was bedtime. What used to be "normal" became a marathon; minutes turned into hours as he just couldn't lay down and get settled. Looking back now, he was probably scared and unsure of how to calm his body down or how to be comfortable doing it. Over the past 5 years, we've gone through so many different stages of "putting Grant to sleep" I can hardly remember them all. But these days, he loves to write on his magna doodle, he is (at long last) interesting at looking at books, and he usually wants me to sit next to his bed while he dozes off. Although I can only guess what he's thinking, it seems to be a bit of "local coherence"; a grasping of something tangible while he heads into the unknown of sleepdom.

Cassidy (11) has always been my talker. Until she could talk, she wanted me to talk or sing to her. As the years have flown by, bedtime is "our time". She will talk about things at bed time that she never would during the day, partly to stay up later, but mostly because it's a soothing, safe time to talk. No interruptions, just the day's fears, troubles, and dreams. We also have read many, many books together over the years. I think the most challenging and the one which prompted the most conversation was She Said Yes: The Unlikely Martyrdom of Cassie Bernall. It's a remarkable book for many reasons and I'd highly recommend reading it with your pre-teen or teenager.

So what is Cassidy doing tonight? Well, another of our traditions is coming up with "what to do when you can't sleep" ideas. In 1st grade, it was "think of all the kids you know" or "think of every person's name you've ever met". Later, it became "think of every book you've ever read". Tonight, well, let me go upstairs and see if she's still going strong.. be right back...
Ok, she's asleep. Tonight, it was "Recite the entire Finding Nemo movie" - I wonder how far she got tonight? If she does it during the day, she can recite the entire movie from start to finish - it's amazing! I can barely remember my own name half of the time and here she is delivering 90 minutes of dialog w/o a sweat.

Ah, all 3 kids sound asleep. No sound in the house except for my fingers on the keyboard. I love my family more than anything, but these few minutes of silence are heaven.

Breaking it down

It's the smallest of decisions - when do you push it, when do you let it go.

For example, when getting Grant to eat, when do you really take on the battle and make him eat something that is good for him but that he REALLY doesn't want to eat? When do you let it go because he might have a complete revulsion to the smell, texture, or taste of the food?

When there is downtime at the house, when do you push it and get him involved, get him in a learning situation, get him in a social situation when he REALLY fights back? When do you let it go because he just needs some time alone.

When it's time for haircuts, how hard to you push it when he REALLY hates haircuts? When do you let it go?

When it's time to ride his bike to the park, how hard do you push him to learn the skills need to ride on his own? When do you let it go and let him guide the way?

These types of decisions are made every day, often many times during the day. The truth is that we never really know the answers. For the past 5+ years, I've been going the PUSH route with Grant on his bike. For a short time, it seemed to be working; he was riding about 30 yards on 2 wheels, all on his own. He seemed to like it. For whatever reason, that didn't last long.

The past few months, I've reversed my tactics. I think I mentioned in some post that I put the training wheels back on his bike. As we ride along, he insists that my hand is on the handlebar at all times. We continue to focus on his pedaling, getting him to fully realize that he needs to keep his feet moving to get to the park. At the same time, he needs to look ahead. While looking ahead, he needs to keep the handlebar aimed in the same direction he's looking. If he looks to the side or to the back, he can't turn the handlebars that way. When we get to the small bridge over the creek, he has to push harder to get up the small incline. When he comes down the bridge, he can't turn too fast or he'll crash. Whew - I'm so glad riding a bike is so simple!

And so, I'll continue to hold his handlebar as he rides along. One day, he will pedal consistently and convincingly the entire way to the park. Following that, he'll get control over the handlebars. He might one day feel so in-tune with his body that he'll take off down the road leaving my hand at my side. That day may come, and it may not. If it doesn't, I'm going to get really good at running along the side of a bike.

If that day does come, I'll have one less decision to make.

Wii-iiiiiiiiiiiii!

So, what did you get for Christmas? Believe it or not, I shared a gift with Cassidy - the Wii! Soon after it's launch, it was the top item on both of our Christmas lists. However, unless you were crazy/smart enough to camp out and get one on launch day, it was almost impossible to find one. Some stores would get a couple in, but you'd have to be there when the truck dropped it off to have a chance. Since I have to work for a living, the chances of driving around to stores waiting for deliveries - well, let's just say there had to be a better way. Enter the www....

I found a site that monitored several online stores for changes in the availability of the Wii. I checked that site probably 30 times a day and I bid on several Ebay auctions. I missed a couple of opportunities and then happened to catch one just at the right time. It felt like winning the lottery. Once it came in the mail, it was so hard not to open the box and try things out before Christmas. It was fun, though, pretending that it was impossible to get one, and seeing Cassidy's shocked face on Christmas morning when she opened the box.

The hype is all true. It's good - it's crazy good. The motion controllers truly change the way you play games, making it much more realistic and compelling. Even better, long play periods don't result in painful hands and thumbs. Cassidy and I love to play Zelda together - the new Twilight Princess for the Wii has not disappointed. The new controls make it so much easier to control and move through the game. The sports game(s) which come with the Wii are simple and yet captivating; everybody, including Staci who is not a video game player, have had a blast playing the games. Even Grant picked up the controllers and started playing Zelda - he figured out right away and had a blast getting Link on and off Epona, the horse.

Now, it's not perfect. I think it's definitely a 1st generation change in the way we'll play games in the near future. The graphics and sound are way behind what you'll get on an Xbox or PS3; the controllers will become even less tethered as time goes on; etc. This list of negative Wii items is one of the better I've seen.

Now, back to Zelda!

Saturday morning...

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

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

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

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

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

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

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

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

Honor Star

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

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

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

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

Milestones

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

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

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

I'm stunned when I look at this list. He has worked so hard, and he wants so hard to understand and to be understood. We will continue to work as hard on the new skills as we have on these, we'll continue to celebrate the victories, and the future will bring what it brings.

Youthful tears

Tales from a Saturday morning...

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

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

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

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

It's (just) a balancing act

It's my dream to see Grant ride his bike, on his own, and enjoy it. Nobody else, including Grant, shares this fervent dream of mine. Why do I desire this?

1. I want to see my son ride his bike. It's my dream. It's selfish. I admit it. But I'm not backing down.
2. Just behind that reason, I want us to ride bikes as a family. All 5 of us, just riding for the enjoyment of riding. Once again, my dream.
3. In the unselfish dept., I want him to be ready if and when he ever desires to hang around with other kids. His bike will be his pass into the camaraderie.

Grant and I have been working on this for 5 years now. I can't even believe it's been that long. I've been married 15 years. I've been out of high school for 20 years. But nothing seems longer than these 5 years of bike training. Very few things have been more challenging.

At 2 years old, not longer after he changed, we would spend short periods of time just getting him to realize what he was doing. Short periods, because his attention span for this activity was very short indeed. Put your feet on the pedals, put your hands on the handlebars, look ahead. Honestly, it was easily a year before he had that mastered. The bigger issue, and that which continues to be an issue, is his focus. Originally, his focus was anywhere except on what he was doing. Anything - the wind, the flowers, the plane overhead, some sound I can't hear - would distract him from moving his feet and realizing that he was moving forward.

I could write pages and pages about our biking times together, unfortunately that would result in you immediately clicking to another page, and we don't want that!

Around 5 years old, with his training wheels moved all the way up, he seemed to have the balance for two wheels. Clearly, he wouldn't be able to do it by himself yet, but he could begin to learn. He got a big boy bike w/o training wheels, and my dream seemed to be turning into reality. It wasn't too long before he figured out the balance and knew that as long as I was holding the bike he didn't have to be scared.

At 6, he really hit his stride. He didn't mind me letting go of the bike and he was able to ride for 30-40 yards all by himself. The joy! And not just me, he was really starting to enjoy riding his bike (no, really!). But alas, that was our peak, and we haven't been close to it since. It lasted for a couple of months, and now he won't ride by himself any longer. He doesn't pedal consistently enough to keep the bike safely upright on his own. Something about me letting go just freaks him out, and he won't stand for it.

So we continue. As much as we can, we get Grant on his bike and he goes, with me walking/running alongside holding on to his bike. I'm convinced that he learns something with each ride. I know that he will ride on his own again. I believe that he will ride unassisted with us as a family, someday. I hope that he will ride with friends, to have fun. I will work with him until it happens.

It's my dream.