13 August, 2014

The San Francisco 49er's & Levis Stadium

I haven't written here in a while; in general, I have reserved this blog for Samuel's surgery, a few political points, and general news. As Samuel is now 21 and growing as an adult, the time is ripe for another update. In this case, Samuel has landed a job as an expediter at the new 49er's stadium in Santa Clara, Levi's Stadium.

The job is working in the BNY Mellon West club at the stadium. He works the pizza / sandwich / crepe station and makes sure that food is queued up for folks to get as they so desire. The job pays better than minimum wage and was won on his own, with guidance from his school program.

Samuel graduated high school in 2011 with a certificate of completion and is now in a "post-senior" program that is run by the Santa Clara County Board of Education. The goal of the program is to help the students continue to mature, learn life skills that may help support their future life in the work force.

Samuel has had some jobs in this program via the "work-ability" segment; he has worked at Orchard Valley Coffee House, at the Larkspur Landing Hotel, and at PHP. All of these jobs have been up to a few hours per week total. These jobs have given him a taste of what "work" looks like and some skills that we are already seeing as an asset to his success in his new role at the stadium.

As part of the school program last spring, Samuel and some of his peers were encouraged to apply for jobs at Levi's Stadium. Let's be clear about this, the stadium, with guidance from the 49er's reached out to this population and in effect said, we want you, the differently-abled population,  here. Samuel had an initial interview shortly after his application that was done with others from his group there at his program. Then, in July, he was called in for an in-person interview. I took him to what was in effect, the cattle call to hire the masses needed to run the stadium concessions.

For his interview, I cut him loose. He went in on his own to interview with the folks from the concessionaire, Centerplate. After a bit, the gentleman who pulled him in for the interview came out, asked if someone was there with Samuel. We stepped outside so he could clarify a few answers that Samuel had given. Once I clarified the questions he had, he told me that Samuel interviewed very well and that he was going to offer Samuel the job. I told him wow, thank you for that. He said that Samuel earned it on his own and was a great candidate.

Samuel had to get his food handlers permit, some uniform components (pants, shoes, a haircut), and attend some training (for which he was paid - as you would expect). He worked his first event on August 2, the Earthquakes soccer game - the first ever sporting event at the stadium. Rowena and I were both curious how it would go; he might be overwhelmed by the long day (he started at about 1:30 PM for the 7:30 PM start time of the game and we picked him up at about 11:00 PM), or, he would be energized by the crowd. It was the later. He came into the car complaining about sore feet, but he had a huge smile on his face. The event was a winner for him.

We had previously enrolled Samuel to attend camp at Via West that would be the same date as the game; part of the terms of his employment at the stadium was that he would need to commit to all of the 49er's games as well as some additional sporting events that include a college bowl game (the San Francisco Bowl). Hence, we had to cancel his reservation to attend the "All-Star" camp week that ran over the date of the first event. But, we had a call from the Via West folks that a few former 49er's football players would be there on Sunday and could Samuel make it to meet them, since he could not be at the camp? We said yes, we would make that happen.

The head liner of the event was NFL hall of fame quarterback, Steve Young. He spoke to all of the campers around the amphitheater at the Via West camp in Cupertino. This is a camp that gives parents like us some down time, or respite. The campers do all kinds of stuff I'd love to do (swim, have camp fires, outings, ride horses...) and on occasions like this, are treated to some very cool folks. In his comments, Steve spoke about how everyone on a football team needs to work together, just like the campers needed to so that camp would work well. He then suggested that the same thing would be true at the new stadium. Steven then asked if anyone in the crowd worked at Levi's Stadium? Samuel of course stood up and said, "Ya, me!" Steve proceeded to ask Samuel his name, what he did at the stadium, and how long he had worked the night before. This was very cool recognition from a true football great.

Afterwards, Steve signed anything campers had with them and then took pictures with all of the campers and Samuel. Samuel was, obviously, thrilled to meet a sports star.

A couple of other former 49er's were there, Allan Kennedy, a two time Super Bowl champion and Dennis Brown, also a Super Bowl champion. Allan gave a nice talk to the campers like Steve did and along with Dennis Brown, signed things for the campers and gladly took pictures with everyone.

Photo Courtesy of Rowena Hinojosa
It was really impressive to see their combined Super Bowl rings together as well.










Samuel is set to work the first ever 49er's game at Levi's Stadium this coming Sunday. It will be an exciting day for everyone at the game. For Samuel, it's the next day in his first job. Thank you to Centerplate, Levi's Stadium, and the San Francisco 49er's organization who have of course, had to set the stage for the culture the stadium will have, a welcoming place to everyone in the community. They were recognized in the Mercury News today for this effort as well.

27 June, 2011

The hope of something better...

My wife sent me this link sometime back that is written by Kathy Ireland. I suggest you read it as it is a heart-felt message that conveys the pain and heart-break that many parents and family feel when a child with Down syndrome, or other such challenges is born. I'll wait while you do that...

...

Okay, I hope you digested that. Because while I have known the pain of hearing the news, "Samuel likely has Down syndrome", I have known the joy of Samuel having Down syndrome. My brother recently asked me if it was hard raising Samuel. I said that yes, it was. What has been hard is the constant challenge the school system has been. Having a lawyer in a meeting to help protect your child's rights is not what any parent expects to have to do. Yet, that has been my experience.

Everyday my son greets me in the morning. We share a hug. We breathe deep two or three times and we are in sync with each other. We begin our day and meet the world head on. Perhaps it is his strength that helps me and Rowena meet each day and the challenges that day brings. Sometimes it's just getting his lunch to him because he forgot to take it to school. Other times, it's dealing with a meltdown over a disagreement with a friend. Either way, we attack each day; above all, we love each other. That is the shield I carry that perhaps folks miss when we meet on the field of battle.

Battle you say? Really? You talk about your son and the system in a context of war? Yes. That has been our reality at times. Since I never expect that, I arm for it every day, because I never know from which angle a new challenge will arise for our son.

I had a biology professor at De Anza College who said, about verbatim, "If you have a test that shows your baby has Down syndrome, you abort that child." Take a moment to let that sink in...

I of course challenged her and was aghast that she could say such a thing. I thought to write letters to the Dean, to write letters to congress. I was stunned. When I challenged her on this as to how she could say such a thing. Her response? "Because society does not treat these people well." It was very matter of fact. In the moment, I thought of my family and friends, and community that knows and loves Samuel. That had not been my experience, in that moment... Anger will blind you when it hits and knowing that, having a shield will help in such cases.

Instead of writing letters or being furious, I put my energy into an extra credit project for that class to show the younger students in my class, to help them understand Down syndrome and to show that people with Down syndrome are valued members of the community.

After all these years, I have come to realize that my professor was right. Not about aborting the fetus, but about society. For this, I carry a shield.

Back to the article by Kathy Ireland... She argues for more funding to identify a "cure" for DS. Let's be clear, no process, no drug, no surgery now or in the foreseeable future will "cure" Polly, Samuel, or others with DS. Every cell in his body has extra chromosomal material. It does not, will not go away. Any research will only help identify the diagnosis sooner and give parents options to do something different (abort, prepare, or put up for adoption). If there is a medical procedure that can catch this and reverse it in utero, then that may make a difference. Check your science, the procedure would need to happen pre-conception. For the families that could afford that.

What then for Kathy's niece Polly? Or for Samuel? If tomorrow a "cure" were found, my son and Polly will be on an iceberg, adrift in a dwindling community. To be true, they already are as pre-natal tests allow parents to make these choices now.

To Ms. Ireland I say, you have it all wrong. I mean, sure, go ahead, fund research to keep more kids from being born with DS. However, I hope that from here, Ms. Ireland, you attend all of Polly's IEP's. I hope you go to the hospital for every event that Polly encounters. I hope that you help Polly understand puberty and sex. I hope Ms. Ireland, that you are there when Polly's parents look to have Polly conserved. I wish you could be there when Polly is taken advantage of in the community. I hope Ms. Ireland that you help education in schools for the other kids, so that they treat Polly and her peers with respect and grace. These things, Ms. Ireland, will make a difference to Polly now. These things will make a difference in society.

My point is, funding is being cut everywhere. Samuel grew up in a time of relatively good funding for the schools. We experienced grief in that time. I don't want to know what parents bringing kids into the public school system are doing today. I can't imagine.

The bottom line, Ms. Ireland, the tragic shortfall in Down syndrome research isn't in finding a "cure", it's in finding a cure for society. Ms. Ireland, put your notable clout towards helping Polly and the other kids and adults with DS be successful in the world. Do what you can to help advocate for better policy so that our kids and our adults with DS have programs where they can be successful. Above all, put your clout to making sure that my biology professor is wrong. Let's work to make society a more accepting place for Polly and Samuel. I'd love to give up my shield.

22 May, 2010

A new scar

Samuel was released from the hospital this morning and is now back home. He's taking it easy on the couch and needs to nurse the wound in his groin as well as the one on his chest. The new scar on his chest was made to implant the "Reveal" device:
It is literally the size of a USB drive, if a little longish. There are 2 contacts on the side that is towards his ribs that will collect heart rhythms. Here is his new scar:

Any heart-beats that go above or below a certain range will be automatically recorded. There is also a manual device he can use to force recording of an event if he notices he faints, etc. We're not sure how well that will work. We'll need to see. The Reveal will be in his chest for about a year and a half.

Onto the next phase of healing and monitoring...

21 May, 2010

Wrapping up.

We just had a call from the doctor doing Samuel's procedure. She said that they are just wrapping up inserting the Reveal monitor in his chest. She said he'd be out in about 30 minutes.

The study seem to take about 2 hours. The rest has been getting the Reveal in place. He'll be coming home on some anti-biotics and they will need to see him again in about a week. The tests they performed found no issues, which is great and was the objective of this effort; the doctors have ruled out the heart, for now, as the cause of his "fainting" or crashing episodes. Also, that says that his heart was not enlarged, hence, surgery is off the table.

We may be home before 10. I'm looking forward to sleeping soundly tonight. Thank you to al our friends and family that have been praying for this optimal result.

Waiting...

The MRI process went fine yesterday. The hardest part of such things—at least in the case that something like an MRI of the heart that requires contrast to better see the heart—is that to do that contrast, they inject the contrast fluid through an IV. After a less than confident tech wasn't successful getting a vein on an emergency room visit some years back, Samuel is notably not fond of needles now. It can be a struggle to get flu shots and when a blood draw is needed.

The good news is that over time, technology intervenes to make all sorts of things easier. Yesterday, they had some patches to put on his arms where they might put an IV. Once Samuel and I came to an understanding of what we needed to do there yesterday, he didn't really notice the needle as it entered his arm. As it was a bit of a challenge to get the IV in his arm, they left it in for his procedure today.

Here is an image from the MRI they performed yesterday. This blog is going to end up being a literal collection of images of Samuel's heart. Appropriate to the title I suppose.
I'm no doctor, but, in the image above, the heart would look to be the thing in the middle. Looks like it to me anyway.

It is currently a few minutes before 3:00 PM today and Samuel has not eaten and has not had fluids since 11:00 AM. Things are running behind. The case before him ended up needing a pace-maker, which is I believe this is what we are waiting on. Victoria is here with us too, which I think Samuel really appreciated. I know I did.

At this point we have no news on the result of the MRI. Our expectation is that Samuel will have the EP study and one of the outcomes from the left branch from the previous post. They seem to be heading towards implanting the Reveal device to monitor his heart.

Once they take him in, we'll head away for a bit to grab a very late lunch, and then come back. I have an essay to finish editing and a bit of reading to finish for my class on Monday. It's looking like we're going to have a late night here.

15 May, 2010

Congenital Heart Defects are a lifelong issue...

Samuel swam two events with the Branham High school swim team today at the league finals. He swam the breast-stroke leg in the medley relay. The relay team ended last in their heat. I have no idea how they ended in the big picture.

His second event was the third leg of the free-relay. I'm not sure where this relay team ended. It would have been good for everyone if they had ended not at the bottom. For me, I'm just excited that Samuel was able to compete. Two years ago, Samuel wasn't able to swim in the trials (held the day before finals) as he was in the hospital recovering from his second open-heart surgery. That he is swimming on his high school team thrills me no end. That's he's here still to do so is a gift.

Unfortunately, Samuel has had some fainting episodes. The doctors have told us that this is quite common in teens. Usually the doctors would have written this off to that fact. However, due to his congenital heart defect, they want to rule out any potential that an arrhythmia or a leaky pulmonary valve are the cause as this could be cause for sudden death.

There have been about 4 such events in the last 5 months or so. He had one episode a couple of months before his 2008 surgery. He had an episode that one of his teachers said she thought may have been a seizure. Rowena took him to the clinic and they found no issue at that time. He went back to school for swim practice. He had been swimming in the pool and the coach said it looked like he fell asleep in the pool. He went to the hospital on that event and had an EEG, among other tests, to rule out any non-heart related issues.

We had a visit at Lucile Packard Children's Hospital last week to review the tests they want to perform on him to track this down. He will have an MRI of his heart this coming Thursday (20.May). Here is the diagram of how that process may go (this is the doctor's detail to us):

Going down the left branch, they expect no surprises from the MRI, but will gain information about his heart. This will then lead to an electrophysiological (EP) study of his heart—presently scheduled for Friday 21.May—that will allow them to either confirm an arrhythmia and do an ablation to eliminate the problem, or implant a cardiac defibrillator, ICD.

In the case that they cannot confirm the arrhythmia, the right side of the left branch in the above diagram, they will implant a "Reveal" monitor under his skin on his chest which will be there for about one and a half years. He would go in on occasion so that they can download the data collected by that device to see if they can spot any events that may be correctable or of note.

The right branch of the above diagram is not desirable. If the MRI indicates an enlarged heart, the doctors will need to do another open heart surgery. The doctor told us that the likely cause of the fainting and the enlarged heart would be a leaky pulmonary valve. In this case, they would look to operate to replace that. Below that on the diagram, they would look to do follow up EP studies to see if the arrhythmia has been controlled.

In case you wonder, his heart, is an amazing heart. Get a hug from him and you'll know what I mean. With that, we start a new phase of Samuel's Heart...

28 February, 2010

It's just a word.

The whole language debate about what's cool to say and not say is back. This time it's the "R" word, retarded or retard. I find myself in a most uncomfortable position, in agreement with Sarah Palin in believing that Rahm Emanuel should have been fired for his words about liberal activists. I'm a hard-core bleeding heart liberal, so bear with me while I deal with that reality.

I've said it before, and I will say it again, the word "retard" is valid when used to describe something that slows you down or gets in your way. It's not a term to use to abuse or belittle someone. Because when used that way, that's just what you are doing, just not to the person you might think or intend.

I can be in agreement with Sarah Palin because she has a child with Down Syndrome, like I do. There are certain things she and I have in common. We know and experience things through our children that no one else that does not parent a child with notable developmental and cognitive disabilities will ever truly know.

I agree with her that Rahm Emanuel should have been fired for saying that liberal activists were "fucking retarded". If he had said some group of folks were "chinks", or "spics", or…, his head would have been on a plate before dinner time. I don't question that. Do you? Yet, somehow, it's okay that he called them retarded. Why?

I voted for President Obama and to say I'm disappointed at the lack of any further discussion on this is an understatement. To date, no further intelligent discussion on this issue appears to be happening in this country. There has certainly been plenty of unintelligent discussion on the issue. To the extent there has been intelligent discussion in the media, in particular Stephen Colbert points out the irony of Sarah Palin not calling out Rush Limbaugh on his use of the word "retarded." Colbert's bit, while offensive for it's unabashed use of the word, was an actual case of satire. That Sarah Palin not only belittled the issue of Limbaugh but brushed it off as satire, is sad and cognitively dissonant.

My son Samuel has needed his parents, his family, his church, teachers, friends, all to be with him in the process of reaching his full potential. My and my wife's' roles in this process, to the extent we are able, has been to be his advocate. That is my interest in writing this piece; not just for my son, but for all of those with developmental and cognitive disabilities. The truth of the matter is, our kids, our loved ones, our friends with these disabilities are not be able to march on Washington for their rights and for their dignity. Perhaps because of this, the nation, certainly our schools, and now our main stream media seem to feel this word is okay to just toss around (6:35 - 6:45 in the clip).

I'm really quite angry at the lack of sensitivity to a whole population who among our global population are least able to stand up for themselves. As a people sharing this same speeding ball through space, we have a responsibility to be more, to do more, to do what we can to reach our own full potential. Using this term, retard not only diminishes the developmentally and cognitively disabled, it diminishes us and makes it less likely that we as a people will reach our potential.

Being angry and writing about it isn't really good enough for me. I need to do more and I've finally decided that I want to do that directly with Jon Stewart. I'd like to ask him why this language is okay? Stewart has become perhaps the most important journalist of our time, albeit a "fake" journalist. Some of the work he does is quite in depth and he's asking political and social questions none others in the media ask. He speaks to the younger generation like no other media outlet does.

I'd like to find out why it is that attacking this group of people has become free game? I'd like for Jon Stewart to meet my son on his show and look at him and explain why using "retard" is funny. I think I win that debate. From there, I want more. I want Stewart, Colbert, Limbaugh, Emanuel, Ben Stiller, and President Barack Obama to connect with Special Olympics and pledge their support to end the use of the "R" word. I want them to make PSA's to help inform the nation that the time has come to respect and for us all to be that village that supports those in our societies that need it the most. This was the basis for the creation of the Special Olympics, and this should be the basis and opportunity for this country to continue to mature and provide simple human compassion to those with developmental and cognitive disabilities.

I need your help. Please pass the link to this blog post to your friends, family, co-workers. I need a contact at the Daily Show who can get me a spot on that show. I want to do my part to help Spread the word to end the word. Because sometimes, words hurt.

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

STEEEE-RIKE!

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?

13 September, 2008

Taxes make a difference in lives.

I believe in paying taxes and I hope you do too. Here's why:

Samuel is allowed to ride his bike around our block. He doesn't do this anymore now since we took the training wheels off of his bike, but when he did, we asked him to ring his bell when he came by the house. We knew about how long it should take for him to complete a circuit, so this helped us know he was okay without having to just sit and watch and it allowed for a certain amount of independence.

The last Saturday in June 2006 (Samuel was 13), we finally noticed that he was gone for a longer while without checking in. First we walked around the block to see if
we would meet up with him. When we didn’t see him we got in the car and drove around the neighborhood looking for him.

We belong to a cabana club so we went by there, which is almost a mile away. He wasn't there. We told some friends who were there that if they saw him to grab him and hold him, then call us. We drove around our neighborhood a bit more. A friend that had been at the pool dropped that and went in his car searching our neighborhood and called his son to get on his bike and do the same. After driving around for about 20 minutes I went home and called 911 while my wife continued to drive around.

While on the phone with 911 and giving them the pertinent details, including that he has Down Syndrome, not a minute later a San Jose Police Department (SJPD) helicopter started prowling around over-head. The 911 operator told us that this chopper was looking for our son. I had been getting upset at the possibilities. The chopper made it all too real and the emotions took over; my tears began to flow. I held it together as best I could in talking with the 911 operator, but it was not easy.

A few minutes later a patrol car pulled up in front of our house. The officer in that car took over from the 911 operator. We told him that Samuel was wearing his bike helmet that had black and white checkerboard with flames at the front, a bright blue tee-shirt, and off-white shorts, riding his yellow bike with training wheels. The officer said that he was the site commander. Other patrol cars came by, perhaps two or three, and took direct orders from the site commander. In all, based on what our neighbors and friends who had also taken up the search in their cars said, more than several patrol cars were engaged in the search.

We were on the phone with friends that were searching constantly, but I stayed planted at home now while my wife continued to drive around, gradually increasing the perimeter of where she was driving. Needless to say, it was very difficult emotionally. He had never done this and in cases where he had wandered some, we had found him quickly. This was out of the ordinary and definitely scary.

After a while one of our friends called from the pool. Samuel had been riding by on his bike. One of the folks from the pool that knows him, saw him riding by and managed to get him to stop and come into the pool area. He didn't want to and told her that he needed to get home. She said that he was hot, sweaty, without his shirt, and looking a bit disoriented. It was a 100+ degrees that day and he did not have water with him. Our friends called us from the pool to let us know that he was there and that they were giving him fluids.

We told the police he had turned up at the pool. They asked if it would be better for his mother bring him home or them. We said no, we want the police to bring him home, hoping that he would get the message: kid, you scared the snot out of us!

The site commander sent a patrol car to get him and his bike. As he rolled up, sitting in the perp seat (back seat), he was waving out of the window to us, seeming to be excited at the special treatment. As he exited the car, we hugged him, told him we loved him, hugged and kissed him, cried, and then began the effort to explain to him how scared we were.

He had ridden about a mile and a half away to see a young lady at our gym that he liked to flirt with. My wife had stopped by in the process and learned that he had stopped, and then moved on. He was in his community and he was looking to touch someone he knew where he knew they should be, just wanting to be like other kids his age. All told, it was a happy ending.

So what does this have to do with taxes? Everything. Have you ever wondered how much it costs to fuel a chopper? Train the pilot? What does it cost to put four to ten police cars on the street for an hour, just driving around? The salaries of all those cops and the dispatchers? The equipment they needed to do all of that efficiently? I sure can't guess.

It is clear to me that our taxes are needed and I have never had a problem paying my share. The services our taxes provide every day are real and are all possible because of you, me, and corporations.

I think I pay not only my fair share, but likely a bit unfairly more than my share. I certainly don't think that the taxes being paid by big oil companies is commensurate with the record profits we keep seeing reported. The current administration has given corporations huge tax cuts in the hopes that this will trickle down and provide more jobs and investment in our communities. I don't think we can say we've seen that fruit sprout, do you? Not when it can be farmed out to countries where labor is only pennies on the hour. McCain proposes more of the same. I'm not sure how much more of this we can take as a country.

I believe that we need to balance the tax equation so that you and me, the working folks of this country, can have a chance at getting our kids into colleges and actually be able to pay the tuition. I think that corporations need to pay their equitable share and help keep America strong and balanced, socially.

I'm willing to pay what is required of me. Our taxes save lives in so many ways. I hope you agree and help do something about the politicians who are looking to give corporations yet even more tax breaks. This political season, there is a choice. A change of parties in the White House is needed.

12 September, 2008

Upcoming...

I have two articles to write this weekend; one on paying taxes and the other on this article.

07 September, 2008

On Special Needs Advocates

Much has been and will continue to be written about Sarah Palin. For my part, as a liberal democrat, I really have nothing to add for her politics. I just don't agree with her or McCain. I believe that the policies of the current administration have damaged this country and that the current republican ticket is more of the same.

What is interesting to me about Palin is her last child, Trig. He was born in April with Down Syndrome. In her speech to the RNC this week she spoke directly to me and other parents of children with Special Needs and said, "you will have an advocate in the White House.".

Well, I suppose that might be interesting to see. From what I am reading about her, she is a career woman and even in that, she has taken Trig along with her out and about. I'm not prepared to comment on her parenting cause I'm not one of her kids and I can't assess what kind of mom she may or may not be. In the end, it's none of my business.

What is my business is the idea that she might be an advocate for people with Special Needs. From where I sit, I'm gonna call bullshit on her suggesting she has the credentials for that role. An article in the New York Times indicates that this has not been part of her history as yet as the Governor in Alaska. There's more there, this is a recommended read.

First, I've been struggling with this blog and how to proceed. It was an effort for me to be able to process my son's surgery back in May. I've put up a few posts since and have been getting feedback that folks are still enjoying reading what I have to say and are interested in Samuel's life and continued growth and recovery.

Too, with this nomination of a parent of a child with Down Syndrome, I've had a couple of folks ask me about this and what I think about it. So, here goes...

As I said earlier, I call bullshit on Palin being an advocate for us parents and our kids with Special Needs. I say this because I don't see how she can. She's busy on the campaign trail and from what I can tell, her husband is too. At the same age Trig is now, we were busy taking Samuel to early intervention. Early intervention
(EI) is a wondrous thing for all kids that are identified and placed in such programs. I say this from first hand experience.

We took Samuel to EI twice a week for his first three years from when he was 2 months old. Rowena and I had the good fortune to work at a place that allowed us to take the time to work at home one day a week so that we could both participate. I would take him on Thursday's one week and the following week on Tuesday. Rowena would alternate the days with me.

These classes helped us learn how to stimulate him and work with him. We learned that instead of wiping his mouth like you would any other child, generally away from the mouth, that we should wipe inwards towards his mouth to help stimulate the muscles and improve oral muscle tone.

We did all kinds of things each week, and we always shared what we did after each class with each other so that we were consistent with how we worked with him. It is a constant effort that continues to this day. I notice that Rowena and I *still* wipe his mouth, when we need to, towards his mouth, not away from it, because we just don't know how to do it any other way now.

After early intervention, Samuel went to a pre-school program for a couple of years until he was of age to begin Kindergarten. When Samuel was born, I apparently told one of our pastors at the time that as our son, our responsibility to Samuel was to help him be the best Samuel he could be. So we sought to have him included (see: http://en.wikipedia.org/wiki/Inclusion_(education) )in the regular kindergarten class environment.

When Victoria was born, I began speaking Spanish to her exclusively at birth. I did this until she was in about 6th grade or so. When Samuel was born. we wanted to do this, but didn't know enough about Down Syndrome and learning, etc. We asked the social worker who was assigned to us at the hospital. She told us we might try to teach him a few words, but that it might confuse him.

We asked the nurses, who didn't really know. We kept asking folks we came across. We finally asked his pediatrician who said to us, "Of course you do. You treat him the same way you treat Victoria. If we see it causing problems then we'll rethink it." Or something very close to that. That's when we finally realized that we were asking because we didn't like the answer we were getting. Our instincts told us that speaking Spanish to him would only be a good thing.

That's what we wanted to hear and that is where and when we started our journey as Samuel's advocates.

So, we followed our pediatrician's advice and that is how we have treated him all along. Our expectations of him are very high, and therefore our view of what and how he should be treated / managed in school are along the same lines.

What Sarah Palin can't do for us as parents of Special needs, is to understand what it all really means. She and her family will never know what it means to have to fight with the school district to get such a placement. She and her family will never likely have a school psychologist tell her that as "the professionals", they knew what was best or her child. The Palins will never have to deal with a principal who doesn't support their efforts at something different than what they knew. They will never have a lawyer attend an IEP meeting to assure that their rights are not violated.

Sarah Palin will *never* be in a meeting with teachers that is supposed to be about process, have it turn into specifics about her child, seek to exercise her rights, and have the Director of Student Services threaten to call the police and have her arrested because she began to record the meeting.

I'm not advocating that pain for anyone. However, I think that as a parent of a child with special needs, having made the choices she has made for her and her family, make such experiences for her, hence her ability to be an advocate for parents like us, virtually impossible. This journey for them as a family is just beginning.

Does that mean if you are a parent of a child with Special Needs that you shouldn't vote for her? I don't know. I know that because she has a child with DS that it doesn't really mean anything to me. I just think that she shouldn't be dangling hope to parents like me that she will be an advocate for what matters to families of kids with Special Needs. I'm not sure she has that credential just yet. Let her and her family live in the shoes of folks like us, where you need a village to help make things happen.

No, having been blessed with your lovely son Trig is not enough Governor Palin. Live the life. Be the parent. Be the advocate for your child. Then, come talk to me and let's see what may be done. I'd be happy to advise you on the issues that face you on your return to Alaska as Governor to help the families of children with Special Needs there. I don't trust you with the deep and critical role you propose for yourself: an advocate for my son.