17 May, 2009

Surfin' Cowell's

Samuel went for a surf at Cowell's Beach in Santa Cruz today. Just north of the pier, the folks from Ride a Wave were set up and helped, I have no idea how many people with disabilities, have some fun in the sun on the waves. Their web page says, "enabling kids with special needs to experience the thrill of riding a wave, regardless of their challenges." That is their mission statement. If that isn't an awesome mission, I don't know what is.

Once we arrived there, they get folks setup with a wetsuit. They have racks of these and here you can see them helping Samuel get suited up:
Safety first; they make sure everyone has a Gath helmet. I've been bonked in the head with my board before, so this is just really good safety coverage. Shaka y'all (who taught him that? No, it wasn't me):
They help him onto this massive tandem surf board. I have no idea how long this board is, 11, 12 foot? It must be 3.4 to 4 inches thick at the middle. The guy in the hat, Dan, is who was going to surf with him today. Each participant gets 3 rides:
There was even a guy out on a board who normally uses a wheel chair. They have a board with a chair on it. This group make sure that anyone who is interested, has a chance to experience the stoke of surfing.

The group clearly has safety as their top priority second only to stoke stoke. Each surfing pair is accompanied by no less than 2 green-shirts / rescue surfers. they were never more than a few feet away at any time, even during the rides.

Here Dan and Samuel are both paddling out to the peak at Cowell's. It was small, but perfect for an event like this. The tide was up and there was small swell. They paddled to about the stairs on the cliff:
They make the turn:
Let the surfing begin:

That was actually their second wave. The first they took a wave and rode it all the way in laying on the board. Then they took that one. Dan stood up first and took hold of the life vest Samuel was wearing and helped him stand.

I took my board and wettie along too to watch from the front row, cause, well - that's what I do. When Samuel and Dan paddled back out, they made their way back twoards me. You could tell Samuel had been bitten by the surfing bug. He was stoked! He had a huge smile on his face. They paddled out a bit turned and caught the very next swell:

The riders to the right in that video are the green-shirts - the safety crew. See what I mean?

My daughter has surfed and now my son has surfed. At one time, I was never sure I would ever be able to say that sentence. To say that I have a smile ear to ear as I type this?, ya. That's an understatement.

After his 3rd ride, they broght him back to shore. I hope he helped paddle in:

I finally made it back in:

Awesome gets over used these days. I take it as a surfing term like stoked, gnarly, tubed, dude... For me, this was truly awesome. I have been surfing since I was about 15. Shall we start that for Samuel? We'll see. Dan, the fellow who surfed with Samuel came by later as we were hanging out on the beach and asked us to contact them. In cases where they may have openings, folks have to cancel etc., he said since we live nearby, we might be able to fill a slot on occasion. So, we'll definately do that.

If you are looking for an organzation that does work to lift people up, and have a few bucks to support that mission, my friend here you go. A huge thank you to the Ride a Wave group. I was excited about this before we went. Now, I'm just in awe. Wow.

13 May, 2009


Samuel threw out the ceremonial first pitch at the San Jose State Spartans baseball game against Stanford last night. He is a client of Via services. They asked him to do this as they were receiving a generous donation from one of their sponsors.

Here's the wind-up and the pitch:

There is enough background noise that you can't quite hear the pop in the catchers glove as he catches the pitch. It was a ton of fun to see him looking all pro about getting setup, going into the stretch and getting that ball across the plate.

There were a number of folks form Via Services at the park. The sponsor hosted a nice meal and had beverages all around. Martín and Garren from Camp Costonoan:

(click images for larger views)

I love the staff from this camp. These folks love what they do and have a personal commitment to serving the special needs population. They are a blessing to all of the families that use this service. They have also built personal relationships with some of the campers, like Samuel, and care deeply about them as individuals.

Finally, a friend of the family, our former pastor Dick Corson (right), was able to make it to the game to see his good friend Samuel throw out the pitch. He has been along on this ride through surgery and recovery and is always amazed at how Samuel copes and excels at his own recovery and growth. Samuel was really happy to see him and Ken Starr, his daughter Michelle, and Ed Circo, at the game. Samuel's life is blessed with health, friends, and family who all love him dearly.

We, his family, are equally blessed.

09 May, 2009

Swimming, Pitching, Surfing & Google

What do these things have in common? Nothing really. Other than that these are the things a 16 year old boy does. These things that Samuel is up to...

Samuel's high school swim team had their league trials yesterday. He missed them last year, so I'm really happy he made it this year:

That was his 50 fly event above. I'm not sure if you can swim butterfly. This stroke is full contact swimming. I can do 25 yards these days. If I tried and have oxygen handy, I might be able to do 50 yards. Samuel loves butterfly and when he's focused, does it quite well. After the turn in this heat, his kick isn't quite right, but he zeros back in once he gets focused again. He also swam the 100 meter Individual medley (one length of each stroke). It has been a real thrill to have both of my kids take up swimming since that was one of my sports as a kid and in high school.

Samuel has been invited by Via Services to throw out the first pitch for the San Jose State University Trojans baseball game against Stanford University on Tuesday night at Municipal Stadium. We went to the park today to get him familiar with the distance from the mound to the plate. I think he's gonna get that ball over the plate. The game starts at 6:00 PM, come on out and cheer on San Jose State (or, Stanford if you swing that way... ;) I'm going to see if he can take a practice throw early. I think he can stand on the mound and throw a pitch that will make it about over the plate. Like we've always told teachers and administrators, "don't throw low balls to Samuel. You throw hard to him and help him learn how to swing at those pitches. He may not connect right away, but he will." Now it's his turn to pitch and throw hard. Come on out and watch him throw.

We have signed Samuel up for "Ride a Wave". This is next Saturday at Cowell's beach in Santa Cruz. This is an annual event that helps people with disabilities to surf. We have never been able to make it due to scheduling. Samuel usually has a swim meet on the day this happens. It appears the date has changed this year, so we have him signed up. He's on the wait list and is hopeful for a noon date with a surfboard.

I also signed Samuel up to attend "An Afternoon At Google" on June 9th. This looks like a hands-on event at the much bally-hoo-ed "Google-plex" to help young adults with DS get some hands-on with technology. The message we received said, "It will be an afternoon of technology and fun! Learn internet basics and how to create an email account, play games and more!" Samuel already has email accounts, a Facebook page, and knows how to find his favorite videos on YouTube. So, who knows, maybe he'll be showing them a little if his application is accepted.

I love it when Samuel has stuff going on. I love it more when he exceeds peoples expectations of him. That's what he does. That's who he is. He's a 16 year old. Pretty much *just* like any other 16 year old.

02 May, 2009

It was a year ago yesterday

Just 1 year ago today, we were starting the process of helping Samuel recover from surgery to repair his DCRV.

In the time since his surgery, Samuel has been the most amazing human. He has never whined, complained or griped about what he went through. Maybe it's because he is a teenager with DS, or maybe it's just how he's built. But if there is one thing I take away from this experience about my son, it's that he is probably more optimistic than me. And that is saying something.

Samuel went into surgery at about 125lbs. He weighed in at his annual check up last week at 121. He is nice and tanned now as he has been swimming on his high-school swim team since January. He stays fit swimming, playing basketball (he took the middle of the three-game series today), works-out at the gym, power-lifting, and dancing at home.

I actually worry sometimes that the process went so well, we must have missed something. I worry about both of my kids. My eldest will be heading off to college in the fall, and I trust that will go well - she's ready. I'll miss her and will of course worry when I don't hear from her. I know she'll be fine, but - I guess that's what we sign up for when we choose to become parents.

Anyway - with Samuel, I just wonder. In the surgery, they not only stopped his heart to take out this excess muscle, but after starting it again, they found the leak that also needed to be closed off and had to stop his heart a second time and go in through the aorta to get to that. I love science and just stop in jaw-dropping amazement at times with what science can do.

It's like, this rant I saw where this guy was on one of the late-night talk shows and he noted how folks complain about how long it takes to get to New York from California. What, five hours? People, it used to take months, if not years and people would die along the way! You get to get in this thing called a plane, sit in a chair, and get delivered across the country in *five* hours. That is still amazing to me. So, get to talking about stopping hearts, taking out excess tissue, sewing up holes, and starting things all-over again, replacing organs, faces, eyes... I am in awe of what science can do.

All-in-all, it's been an amazing year.

08 March, 2009

Join me, please?

There have been a number of things going on in our lives and with Samuel. Today he was the Mayor of Munchkin-land and the Witches Soldier in the Angels on Stage presentation of The Wizard Of Oz. It was great fun for him and was very cool that he and his peers had a safe, fun place to be together and express themselves in a creative and artistic way.

Also, education is on my mind and I'll take this up at another time. Suffice it to say that with the budget issues in California and the global economic crisis, I fear that Samuel and his peers will be at the short end of the budget stick. More later.

What occupies my thoughts at this time is a social problem I have written about before. I and many others I know who have a family member with disabilities are constantly challenged when we hear someone use the word "retarded" or "retard", as a derogatory term. Merriam Webster on-line defines retard as a transitive verb: to slow up especially by preventing or hindering advance or accomplishment : impede.

The issue is that this word is not used in conversation in this manner. I hear it in the work place and in open social situations; particularly at schools or where lots of young people hang out. The word is used as an insult, "he tripped! HA HA, what a retard!" or, "that's retarded" to describe something that doesn't make sense.

I get that use of the word to mean to slow things down as in, "we should retard progress while budget is problematic" is accurate and logical. Unfortunately, this word has just become a low-hanging-fruit insult. This comment hurts the population at large that has disabilities, the families of this population, and our society in general. I believe that it makes us less than who we are and who we can and should be.

There is an organized effort to "Spread the word to end the R-word day":

Please spread this video, this blog post, links to the Special Olympics site to End the r-word, or whatever you can do so that we can hopefully get this word out of our lexicon.

Join me, will you please?