Video for Autism Speaks

Here's an interesting little project to raise money for charity, this particular video is raising money for Autism Speaks. There are other videos on the site as well, but this is the most engaging. There are some beautiful pictures as well as some challenging words. I learned about this video from Krazy Kat and Mother's Intuition.

I'm sure there are many bloggers who decry such a video and who abhor a line such as "a world where autism is a thing of the past". There are a few commenters on the video itself who fall into that category.

The problem is that the word 'autism' is drawn with too wide of a brush. Somehow, the syndrome covers each of these and more:
- a child completely unable to communicate and unable to cope in most environments
- my son who has a very hard time communicating, has "odd" gestures, has apparently no desire to make "friends", but at the same time enjoys doing many of the same activities of other kids his age.
- a boy who has no issues communicating either by speech or by writing, but has a very hard time understanding social situations.
- children born with a very noticeable "difference" from day 1
- children, such as my son, who develop normally until around age 2 and then regress into their own world.

When a video like this says that we ought to make autism "history", I think it's suggesting that many of these children are living a life unfairly thrust upon them due to environmental reasons. Those battling this concept of a "cure" or making autism "history" seem to be the most likely to deny environmental reasons for this disorder, that autism is just "normal". There may indeed be some number of on the spectrum who are "just that way", but due to the wide spectrum of autism they have the same label as someone like my son.

It's not fair to either side, the only fair thing would be to abolish the "spectrum" idea and diagnose the various symptoms differently. Until that happens though, and it never will, I fall in with the "cure" camp and strongly believe that far too many of our children are suffering with neurological damage due to environmental factors.

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.

Hands off

What do you do when you can't get your point across? When people don't pay attention to you? When it seems as if others are speaking a different language?

Grant deals with these questions every day. I can only imagine what my own response would be. I know how frustrated I get when I just have to repeat myself.

Since his earliest experiences with ABA, one of his answers has been to hit the closest person. Well, "hit" is a bit strong... it's really a slap on the top of the head. He's never hurt anybody, but clearly as he gets bigger and stronger, it's become a serious issue. He hits when he's frustrated, when he just can't get his point across - especially when he's being told to do something and his point is "no".

At a team meeting with the school a few months back, we all agreed it was time for the hitting to stop. We also agreed that a positive reinforcement system would be our first plan; we just needed the right reinforcer. One of the hardest parts about doing true ABA with Grant is that reinforcers are short-lived for him. Even when it's his very favorite thing in the world, he's willing to give it up so that he doesn't have to do the task at hand.

So what to use? It turns out, he answered this for us himself. One day when we were playing with the Magna Doodle, he writes "Hollywood Video" just as clear as day. Now, not only did we not know he knew how to write this, but we didn't really know he had a concept of what the store is about. We'd only been there once or twice, but evidently he remembered it very well as the place with all the movies. Not long after this, it was very clear that Hollywood Video would be our positive reinforcer.

His teachers have been fantastic in implementing this plan. At first, they were keeping him out of situations which had been prompting hitting so that he could get the positive reinforcement. After about a week, we were sure he completely understood the trade-off so he was taken off the 'easy path' and he was expected to stop hitting in all the normal school situations. It's definitely been a success; he'll go several days getting his prize, and then a day or two with a hit. There have been days when he cries at the end of the day when he came so close and he knows he won't get his video fix that day.

We've also used this at home on the weekends. His little brother has been the happy recipient of less hits on the head. Even more exciting, this task has brought new, unprompted words from him. In the afternoon, when he knows that he has not hit, he walks up to me and says "no hitting, Hollywood Video, Grant". It's probably his most diverse set of words and phrases and he came up with it all on his own. More words and less hitting - can't complain about that.

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.

Autism around the world

After a fun but tiring weekend I sat down to catch up on a few blogs. Mom-NOS is always my first stop, and her post was a good laugh. Kim Stagliano's blog was next, and the last for tonight. I'm not sure how well I'm going to sleep, if at all, after reading it.

Tonight's post - An Autism Calling - was a re-posting of, apparently, a friend of a friend's blog. Autism around the world - it's a thought that has often struck me, especially when others ask me about autism. It's not just a US thing; it's a world-wide issue. The rise is occurring in both developed and undeveloped countries. But while we here in the US struggle with our local school districts, we, for the most part, care for our children. We love them and do our best for them.

However, how many tens of thousands of kids, just like my own son, are struggling to survive because of their condition? What would my son's life be like in North Korea? Would he even still be alive at age 7? What would his life be like in another country? Would he be chained up because he can't talk and he can't pay attention like the other kids?

We live a blessed life, and I thank God for it. We spent the day, a warm March day, playing in the pool. We do our little part for the autism community, and the larger special needs community, by running Club Kangaroo. We must continue to do our little part. But -- the problem is so much bigger, and after reading this post, so much more desperate.

Where do we begin? How do we help? Which organizations are trying to help across the world?

The thought of any child starving, suffering, and even dying because of autism is too much to comprehend. There must be a way to help.

Too much TV

OK, I admit it (that's the 1st step, right). I watch too much TV. On Monday, I can' t miss 24 and Prison Break (my favorite show) and there's also What About Brian. Tuesday, it's American Idol. Wednesday, it's American Idol (again), Lost, and I've just started watching Jericho. Thursday (ouch), it's American Idol, Survivor, CSI, and ER. There is always the smattering of Giants games, Sharks games, and during football season, all the Steeler games I can find.

With Tivo, it's a little too easy to catch up each night after putting the kids to bed. And while I admit to my shortcoming, tonight's shows will keep me coming back. Lost had its best episode in quite some time; the adventure, intrigue, inside humor, and suspense all came back tonight. Locke- what have you done? Again!? Hurley - who knew!?

As for American Idol, we sent off our 500 votes tonight, ~100 each for Gina, Lakisha, Melinda, Jordan, and Stephanie. Wow, the girls are so much better the guys. I would hope they'd change the rules and put 8 girls and 4 guys through to the final 12. Lakisha and Melinda are just amazing. Gina and Jordan have a ton of raw talent and it will be fun to watch them grow or fall during the season. In our house, Kelly Clarkson, Carrie Underwood, and Chris Daughtry are at the top of our playlists, will there be an addition to that list this year?

Who's your favorite? Do you watch too much TV?