Wednesday, December 31, 2014

I Know People...


Yeah, that's right, I know people. I know what you are thinking, I'm something special because I know some pretty important people. Well hell yeah, I am special and I know some of the most special people you will never know. No, not BeyoncĂ© and not Jay Z or Bono or anyone "famous". I know people who matter. Who are special. I know people who have to grieve over the loss of their children. I know the people who have to ignore the stares. I know the people who have to sacrifice everything. I know people who have to wipe tears from their eyes all the time when no one is looking. I know heroes who painfully worry about someone other than themselves. I know the most unbelievebaly strong people who will never be recognized for who they are. I know the people who matter to the people who need them. I know the people who don't eat or sleep because of those who rely on them. I know the stress of not being able to talk to your child. I know the people who lay awake at night accepting the reality that they or someone they love dearly is going to leave us all sooner than they should. I know the people who will forever be the caretakers of those of us less fortunate than you. I know the real heroes who live amongst us unheralded, unrecognized, under-appreciated. I know the mighty!  

Monday, December 22, 2014

Don't Lower The Baskets, Part Deux.

I'm reposting an amended version of my original blog post called Don't Lower The Baskets in order to recognize one of the silent heroes who make "specials" like me feel like we're not so special. This post honors my basketball coach Steve Frantz at the Ambler YMCA. 

You see, I've been in the gym shooting baskets a lot lately and it got me to thinking about how much we lower the bar these days. It's easy to expect less of people and be happy when they exceed mediocre expectations. Whatever happened to setting the bar high and stretching ourselves to achieve at our max ability or over it? I always shoot on the regulation basket. That's 10 feet in the air. Literally 6 feet taller than me. I couldn't make it when I first started, but after lots of tries, I make it almost all the time now. I can even hit a few from the real foul line. I'm not bragging but merely trying to make the point that no matter how high the bar, or basket, and no matter how much you think you can't, you usually can if you try. It's even more achievable if you have people around you to coach and teach and encourage you.  

One of those people is Coach Steve who treats me like all of the typical kids on the team. I'm actually pretty good, hundreds of hours of practice will do that, but I still have challenges and am still different, and Coach Steve makes sure I'm learning just like the typical kids but he doesn't favor me. Mom and Dad refrain from running onto the court every five minutes to help me, and so does Coach Steve. Because of Coach Steve, I'm learning lots of new things and so are my typical teammates. They are learning tolerance and will be future heroes like Coach Steve. I am learning that I'm not so special, and fit in with everyone else. So thank you Coach Steve and all the other silent heroes who don't lower the baskets for "specials" like me and for anyone else. You make us all better and for that we thank you. 

Friday, November 7, 2014

Take a Selflessie





The first Selflessie??


My latest blog post is an everyday hero shoutout to Jason Crompton, an amazing 8 year old from Liverpool, UK as highlighted in a recent article in the Liverpool Echo. He's one of the unsung heroes in the world who care more for others than themselves. In our disgusting world of the narcissistic selfie, these heroes serve an important purpose in the world, hopefully creating some level of balance to to the "look at me" and "what's in it for me" mentality that I see every day. I know many of these selfie-less heroes and am constantly reminded of others that exist in the world. Just read some of my older posts and you will see some great examples...Elliptical Man is a great example. I suggest you read it. 
Reading Jason's story made me wonder how a little kid with some serious problems of his own knows to put his issues aside for his dying brother. Then I realized, it's human nature. We're supposed to do this. It just seems like too many people forgot this along the way in their me-centric lives. Just take 5 minutes on Facebook or Twitter and you will see countless posts by people highlighting themselves, or their vacation or even their dinner (seriously people, stop posting pictures of your food. NO ONE CARES). So this got me to thinking and I came up with a wonderful idea that I hope all of my readers and future readers will embrace and maybe it will get some legs like the ALS Ice Bucket Challenge. Here's the deal. Next time you do something good or selfless for someone else, or next time you witness a selfless act, take a picture and share it on social media as a Selflessie. Even if I see one Selflessie for every 50 stupid duck-faced selfies, I will feel like I have restored some balance to the universe. Please share this idea with everyone and let's see if we can make the Selflessie a thing of its own. Now read below and enjoy the full article about Jason as written in the Liverpool Echo.

ECHO Everyday Hero: When brotherly love knows no bounds

An eight-year-old boy is the ECHO’s latest Everyday Hero, after his proud mum revealed the “loving and incredible” care he gives to his terminally ill little brother.
Jason Crompton, 8, has himself suffered from from cerebral palsy and severe learning difficulties since birth and needs help with everyday things, like eating and changing.
But for this special little boy, his condition is no barrier to helping care for his seven-year-old brother Ryan.
Ryan has suffered from brain damage since birth, and “no one loves him more than Jason”, according to mum Victoria.
Victoria, 32, from Stockbridge Village, said: “Jason’s got his own problems and difficulties.
“But he just wants to help Ryan all the time. I don’t know how he does it, he’s absolutely amazing.”
Ryan is in and out of hospital, and always has his special carer by his side.
Victoria said: “He looks after him in hospital and holds his hand. Their love and bond is so special.”
Big-hearted Jason has to face constant worry over his beloved little brother, but somehow finds the time to make sure him mum is OK too.
Victoria said: “He’s always worrying about his brother due to his illness.
“But then he worries about me as well.
“I say to him ‘you don’t need to worry, we’re fine.’ But no matter how much I try he just can’t stop loving and caring for us both.
“He adores his brother and mummy, and we both adore and love him millions and more.”
Victoria, who is bringing up the two boys on her own, says that due to their complex but different neeeds, family life can often be tough.
She added: “It’s hard for Jason because he loves to do sports every day, but he just gets on with as much as he can at home.
“Even though he needs 24/7 care, he’s a lovely, happy-go-lucky little boy.”
Jason’s loving nature hasn’t gone unnoticed at his school, Bluebell Park in Kirkby.
Victoria said: “He’s always getting mentions in assemblies and special awards at school for helping other people.
“The school say he’s ‘out of this world’.
“Just the other day, I was going to change Ryan, and I said to Jason ‘do you just want to wait until I’m done?’
“Before I knew it, he had jumped up, got some wipes and started to undress Ryan. He was saying ‘I’m helping mummy change Ryan!’ He’s just incredible.”

Tuesday, October 14, 2014

Responsibility


I have to admit, that due to my prognosis I am sort of off the hook for being personally responsible. I mean I try with what little I can comprehend of the meaning, but I definitely avoid the truth when Dad asks me if I "accidentally" pooped my pants. I usually just lie that I didn't to avoid all of Dads facial gyrations and complaining when he cleans me up and throws away another formerly fresh pair of Star Wars underwear. Oh well, I am what I am. But there's no excuse for teens like Big Bro and Big Sis. There are way too many teenagers who think that being responsible is something for later on in life when they are adults. Too much alcohol, too many drugs, taking advantage of others, cheating, bullying, not looking out for one another or being honest with people. The list goes on and on. Big Bro was home from college for the first time last weekend and told me all kinds of stories about people he's helped and things he's witnessed where personal responsibility was lacking. He never gives names to protect his friends which is admirable even though mom and dad pry. (Dad way more than mom) The encouraging thing, is that Big Bro and some of his close friends at college appear to be very responsible and look out for their peers which is reassuring. Being responsible isn't always the coolest course of action nor is it usually the easiest which makes it that much harder when you are on your own at school with no guide book other than your own moral compass and that of your friends. So, thanks to all of the responsible young adults who pick up the slack for the irresponsible, and hopefully they rub off on some of their friends who live a little dangerously, and hopefully they have each other's back when they may veer off course in a moment of stupidity. I know Big Bro's not a choir boy, but I know he's safe and I trust him to be smart and look out for people he cares for and even those he doesn't. College sounds like a fun place but also a dangerous one if you are an idiot. I'm glad that all of the freshman I know who started college this year are responsible young adults which I know makes moms and dads of freshman everywhere sleep a little better at night. They should be proud that their kids will be even more responsible adults. Unfortunately, there are still too many irresponsible adults out there too, but that is probably a whole separate blog post...Please share this post with all of your college friends and their parents. 

Thursday, September 25, 2014

Sisters

Before you get all excited, this post is not about Sister Francis who taught dad how to take a real punch in the 4th grade at St. Monica. He's pretty sure her real name was Frank, but I digress. This post is also not about my wonderful sister Sarah or Dad's sister Dina who tolerated his abuse for years and still seems to like him. No, this post is about Richard's sister and many other sisters like her. Richard is a new friend of mine who joins me at Tennis Buddies on Saturdays. Richard has Downs Syndrome and is 53 years old. Don't let his age fool you. Besides playing tennis, Richard swims, and does karate among countless other activities. He's pretty cool. But even cooler is Richard's sister. Richard's sister cares for Richard. She drives him to all of his activities and is his primary caretaker. I am sure that when she was a young girl, she never imagined that she would be in such an important and trying role at her age, but she is and she is a hero. What would Richard do without her? No one plans to have a Richard in their lives, and no one plans to spend their golden years as a caregiver, but once fate challenges you, sisters like her show us what amazing people are out there in the world. I know my Big Sis is an amazing person who is literally capable of anything, and I know that when Mom and Dad are gone, she may be in the unenviable position of caring for me if I make it that far. I am convinced that she will be an exemplary mother and Sister making sure uncle Sammy and her kids have enough soccer balls and whiffle ball bats to go around. I would never ask her to volunteer for such a burden, and neither would Mom or Dad, but I know that she would step right in and keep me safe while caring for her family and changing the world for the better at the same time. Just like Richard's sister. So to Richard's sister and all sisters in the world caring for their disabled siblings in obscurity, you are my hero and I hope that everyone shares this post with as many sisters they can so that everyone knows what heroes sisters like Richard's are.

Friday, August 15, 2014

Tomorrow


Tomorrow, I am dropping Big Bro off at college. Tomorrow, Big Bro will begin experiencing life without me there all the time. I know it will not sink in right away, but he's going to miss me. Even though I've made his life somewhat crazy for the last eleven years, he's going to miss me being around. He might miss Mom and Dad and his morning drives to school with Big Sis, but he will miss me the most. Tomorrow, Big Bro will begin a new journey that I have helped to prepare him for. Someday he will thank me for helping him to become the special person he is today. Tomorrow, Mom, Dad and Big Sis might cry (Mom will), but I won't because I won't really understand that Big Bro is leaving to become an adult. Even though I may not cry, I will miss him every time I see his jeep in the driveway and yell "Geegan's home!" (For all of my friends who haven't met me yet, I can't say Stephen, it comes out Geegan.) Tomorrow, Big Bro may be called a freshman who is arriving at AU to expand his horizons which is true, but what AU will soon learn is Sammy's Big Bro is there to expand their horizons too. So, to Big Bro and to all of my friends who will be experiencing their "tomorrows" in the next few weeks, good luck and make a difference so all of our tomorrows are better ones.

Friday, July 25, 2014

Embarrassed??

Mom, Dad, Big Bro and Big Sis got back from London this week and told me lots of funny stories about the trip. One recurring story was how Big Bro and Big Sis would get so embarrassed when Mom and Dad would use their horribly bad British accents very loudly in the most public of places. The crowded tube, high tea, museums, everywhere. To me it sounds pretty darn funny, but they were beside themselves. Go figure that Big Bro and Big Sis are the only ones left in my family that can feel embarrassment. I'm not sure I could even feel or understand embarrassment, but even if I could, I couldn't care less because life's too short to care what others think about you. Now mind you, you should be embarrassed if you do bad things to people or do really stupid things like Justin Bieber or Anthony "here's my" Weiner. But just being yourself should never embarrass you if you are not offending anyone. I still make a biggie (poop in US english) in my pants in public sometimes, but you don't see me hiding my face in shame. I just roll with it and lie that I didn't do it and Mom or Dad, unembarrassed, take me to the loo :-) and clean me up. You see, when you stop worrying about embarrassment, you become way more self confident. Think about it. Do you think that Captain James T. Kirk would ever be so bad-ass if William Shatner ever got embarrassed by his over-acting super egomaniacal personality? No way, and what would the world be like without Captain Kirk? Way less awesome, Dad says. And what would the world be like without the unembarrassed you? Even more less awesome. So do me a favor this weekend and test out my theory. Let your hair down, and spend 2 full days not caring how others will judge you. You'll thank me on Monday.....unless you get arrested at which point I will plead the fact that I am an 11 year old with a sub 60 IQ. Now helm ahead, warp factor 2 Mr. Sulu.........Cheers!

Monday, June 30, 2014

Not Sel-Fish

I participated in a special needs fishing trip this weekend out of the Ocean City Yacht Club. I didn't know what to expect since it was my first time. I thought they would cram a bunch of kids like me on a party boat, drop anchor, and hope to catch a stingray. I couldn't have been more off-base. Mom, Dad, Big Sis and I were greeted at the doc by a 35 foot Triton center console sporting 750 horses worth of motor(s). It was beautiful, and so were its owners, Don and Sue Dolaway. Don and Sue could not have been more gracious hosts. There were countless other vessels like this, hosting kids like me and their families along with countless other volunteers giving their time, at their expense,  to make some kids smile. Dad asked Sue why they do this thinking they had a grandson or friend who was special needs, only to learn that they do it because it is fun. And fun they were. Don and Sue could easily enjoy this fun all to themselves, but chose to sacrifice a beautiful day for others. Not too many people with the gifts that life has bestowed them like Don and Sue are as giving. They may donate to charity, but rarely do you see people spending time and getting their hands dirty.....quite literally in this case. Too many people who have more than they will ever need take the time to give to someone else and that is sad. Let me correct that. They are sad. When I saw how much fun Don and Sue were having with me, I felt bad for all of those people who hoard their wealth and their time, and never take the time to enjoy the company of someone who might not have been as fortunate as them, whether it be someone like me who is limited by my brain or someone who may not be as fortunate economically. So, to all of you who can easily afford it, invest in an experience of volunteering or reaching out to others. It will return nothing financially but will provide immeasurable returns to your soul.

Thursday, June 12, 2014

TBT Blog Post

To get in line with the trendy TBT crowd, I dug up the following letter written by my Mom. It was posted at my 2nd birthday party which at the time was a huge celebration for me making it to my 2nd birthday party. Everyone who read it got to take a light blue wrist band similar to the infamous Lance Armstrong "Livestrong" bands. Our bands said "Hope, Courage, Faith" and Dad has worn his every day since that day....almost 9 years later. I would like to say that even though I am not famous, I definitely have fared better than Lance. So I apologize in advance for another post highlighting the trials of my family, but when you read this you will know that you can push through whatever trials you are faced with and have a mushy TBT Facebook post to look forward to in your future. Oh, and Mom, thanks for letting me be ME...

          "Hope, Courage, Faith. Words my family lives by. In June of 2003, my family was presented with some facts, cold, hard facts, that our yet to be born son, Sammy, had several rare conditions which would ultimately leave him in a vegetative state. He would not speak. He would not walk. He would not move. He would not swallow. He would not see. He would need artificial means for respiration. He would need tubes in his nose or stomach for food. There was a possibility he would be stillborn. After many tears, we made the painful decision to let Sammy be Sammy. We would not hook him up to artificial means of life support in a cold intensive care unit, we would rather hold him in our arms every single minute of his short life.

            At 6:00 p.m. on July 12, I went into labor. I put Stephen and Sarah to bed and kissed them goodnight. Two angels asleep, with no knowledge of the road that lay before me. Half way to the hospital I discovered that I did not have Sarah’s angel necklace. For some reason I believed this necklace would give me and Sammy some sort of divine protection. We turned around and I delicately slipped the necklace off of Sarah and placed it around my neck. At the hospital, I was put to sleep and Steve was forced to face the birth of our child alone.  Sammy cried when he was born. He kicked, he screamed. He peed on Steve.  He was alive.

             I held   him close in my arms every single minute we were in the hospital. In the beginning he was gasping for breath. I felt every muscle in his little body tense as he tried to inhale. There were times when he would stop breathing. I would then shake him and say, Sammy, I know you can do it, take a breath for mommy. Sometimes I had to shake him to keep him alive. I sang to him to keep myself awake. I had to win this fight. I had to keep him alive.

            As a last resort we took him to the intensive care unit at CHOP. He was there for one night. They had no hope; they sent us home with hospice. They expected him to pass away over the weekend. But he didn’t, he thrived. One week passed and we celebrated his first week’s birthday. We held him. We sang to him. We played with him. We took him to an Eagles game. We took him down the shore. We took him to camp. We never lost hope. And despite the Doctors’ assertions that he could not swallow, we gave him a bottle.

            We quickly got rid of hospice. Instead of waiting for Sammy to die, we began to look to the future. We enlisted the help of early intervention and began services at three months. We decided to maximize Sammy’s potential. He rolled over at five months, started to crawl at ten months and walked at 20 months. He now says ball, baby and bye bye.

            Despite the overwhelming odds, we never lost hope. We never lost faith. Sammy has been our inspiration. He struggled to take his first breath. He struggled to take his first step. Today he struggles to say his first words. But he never gives up. He has overcome the odds and he has shown us all that miracles really do happen.
           
            My son Stephen has shown my family the true meaning of courage. As you all know, Stephen has been diagnosed with a rare blood disorder called Evans Syndrome. What you don’t know about, is the courage Stephen has exhibited since he was first diagnosed with this disease. He has had more IV’s, transfusions, and hospital visits than I care to remember. He had chemotherapy in the outpatient unit of CHOP for four weeks in a row. We were surrounded by children with no hair and masks around their little faces to protect them from the surrounding germs.

            Stephen faced each week with a positive spirit and a level of bravery we didn’t know he possessed. He, and we, did everything we could to make life as normal as possible in what sometimes felt like a very dizzying whirlwind. To be honest, we couldn’t have done it without him. He showed us fearlessness and resolve on the baseball field. Even though his team didn’t win every game, Coach Dad went home every night feeling like a winner. Every time we left a teacher conference, where his teacher could not tell us enough what a smart and mature boy he was, we were strengthened. He has never let us down through all of this, and we are proud.

            And lastly, while speaking about proud, we cannot forget one little angel. Sarah. Sarah has been the glue that keeps us together most of the time. Her sensitivity, kindness, sense of humor and quirkiness has made life more normal for us. She is truly an angel on earth and we are blessed with her.

            As parents, we have experienced a level of accomplishment with our children that most people only feel when their children are grown. We have also learned a lot about ourselves and our loved ones who never missed a beat. We are fortunate in misfortune. We are enjoying the “lemonade” every day…


            The Hope, Courage and Faith bands have a special meaning to our family. These attributes are represented in all of our children. We hope that you take a band and find inspiration in these words and the people around you as we do."

Thursday, May 22, 2014

This I Believe...

This blog post comes courtesy of my Big Bro. He was kind enough to allow me to post something he recently wrote that is highly personal. The essay below was part of a school assignment that will be published on ThisIbelieve.org an international organization engaging people in writing and sharing essays describing the core values that guide their daily lives.

You Are Going to Die, So Be Happy
Stephen Cammarota


It may sound morbid, but people have an expiration date. Sometimes people don’t even get a chance to make it that long. Car crashes, sickness, acts of god, all of these things have the potential to snuff out the light of life. I don’t dwell on this reality, I merely acknowledge it. Accepting mortality allows for  a more fulfilling life. You are going to die, so be happy.

Last year it was very likely that I had lymphoma. Various preceding medical complications, including a blood disorder and an immune deficiency, as well as  two courses of early age chemotherapy  had most likely mutated my cells into cancer cells. The outlook was grim, all of the tests came back positive. When I was first made aware of this, I did not know how to feel. I didn’t cry, I wasn’t angry, I was just puzzled. I thought, “young people don’t get cancer”. Sure I have some other serious medical problems, but not anything as serious as cancer”. The enormity of the situation was very real and I understood it, but I just couldn’t bring myself to feel anything. The full effect of this news came crashing down on me about a week later. I would have panic attacks, and be unable to function. I finally knew damn well what emotion I was feeling, and it was fear. If things kept on going the way they were I was going to die from panic long before the cancer got to me. Thats when I made the conscious decision to accept the fact that I might die, and it might happen sooner rather than later. It was liberating. 

Allowing the possibility of death into my life allowed me to move past my fear. I started focusing more on the time I thought I had left, making the moments count and not focusing on the petty trivial pursuits that had governed a large part of my life. Gone were my worries about the quiz I failed and if my hair looked okay that day (It did). I devoted more time to family and the things I liked to do. This was not denial, this was freedom. I realized that I might die, and this made me appreciate what time I had, and how much my friends and family cared. I was feeling better than I had in a long time. The news came that this wasn’t cancer, just a flare up of a pre-existing condition.  The response my father received from me after relaying the information was “Thats cool”. Needless to say, he was surprised.

Nobody lives forever. Realizing this has made my life all that more precious. I thankfully do not have cancer, although I am still 50 percent more susceptible than the normal person. I make more time for the more important things, and I worry less about the small stuff. Accepting that death is as much a part of life as life itself allows for a more fulfilling and rewarding existence. This I believe.

Mom gets it...

Friday, May 2, 2014

The "C" Word

One word that should never be used: the "c" word


Mom just read an article about a beautiful young woman who suffers from a rare disability, (in fact it doesn't even have a name) where she doesn't produce any body fat. At the age of 25 she weighs a mere 58 pounds. She spoke with confidence, poise, grace, humility, and a sense of humor. When asked how she was able to speak with such confidence despite the fact that kids were afraid of her in elementary school and often bullied she replied " because my parents never said the word "can't". Her parents treated her like every other kid. Therefore, when she went to kindergarten, she had no idea that she was "different" than others. That got me to thinking. I can't remember the last time my parents told me I could not do something. When the doctors said I would never be able to take a bottle, my mom got rid of the feeding tubes and gave me a bottle anyway. When they said I would not walk, my parents got rid my walker ( in Disney World no less!) and had me chasing Mickey Mouse and Goofy. I got some bumps and bruises along the way, but it has made me who I am today. Instead of telling you what I can't do, let me tell you what I can do. I can run faster and farther than dad, I can throw a baseball harder than mom, I can make more baskets than Big Bro and I have more endurance than Big Sis. I can play any sport that involves a ball, and in most cases, I am better at it than my family. I have skied some high mountains, and swam with some beautiful fish. I even  flew in a  4 seater plane with dad just for fun! Maybe someday, I will fly the plane myself...

There are so many people who tell themselves they can't do things. You've heard them. "I can't imagine what it would be like to be in your shoes", "I could never handle being diagnosed with that", "I'm not smart enough", "I'm not strong enough" and so on and so forth. But guess what. You can. My parents did. My Big Bro did" People can and they do. So let's not talk about what you can't do. Dream big and shoot for the stars, and the rest will follow.

Friday, April 18, 2014

More Frogs less Richards

I've seen a few Facebook postings about Disney Princes this week. Plus, my Big Bro did a Prince-like Promposal this week as well. Who knew he had it in him. His date is pretty, smart and athletic... and a big Disney fan. Seems like lots of girls want a prince like those in the Disney movies. Who wouldn't? They're virtuous, handsome, respectful, smart, brave....you get the picture. I still think of Big Bro as more of a frog than a prince, but I know he's really a prince and will always treat girls and women with respect. Most princes in high school are still frogs who will have their metamorphosis when they get older. Not too many girls like them now, but will later on in life. On the flip side, I also notice lots of boys who we'll call Richards. I think there's an abbreviated name for Richard, but hey, I'm 10. Anyways, I see lots of these Richards who are supposedly the cool kids being rude to girls and being rude in general. There are lots of these Richards roaming the halls of high schools everywhere. You can usually spot them wearing their slides and black socks, while plenty of frog/princes move about in semi-obscurity usually drawing a blind eye from the girls...for now. I'm glad there are parents raising the invisible Princes out there, because I know they will grow to be good men who treat people respectfully, especially women. So from one little 10 year old frog to all the frogs out there, keep your heads up, it's only a matter of time. And to all the Richards, pull your pants up, put on some real shoes, and stay away from my sister!!!

Friday, April 11, 2014

Slightly Different

It may sound strange, but sometimes I prefer being as drastically different as I am. Once people meet me, they know I have some serious issues and they are immediately nice to me. They would never tease me or make fun of me. Even the "typical" kids I've known from kindergarten through 4th grade have been nice and have never teased or bullied me. Lots of my "atypical" brethren experience the same treatment, whether they have abby normal brains like mine, or they have visible physical limitations. The more messed up you are, the more likely you won't be teased or bullied. Even the bullies steer clear. Obviously there are still a few cowards who poke fun of handicapped people behind their backs or behind closed doors, but I have yet to see someone do it directly. So while my friends and I are safe from the majority of bullies, I feel deeply for the kids, and adults, out there who are "slightly different". They are "normal" compared to me, but they may be smaller, or act differently, or have something about them that makes them slightly different from the majority of "perfect" people around them. These are the poor souls who are fair game for the bullies. Like the poor boy near Pittsburgh this week who finally snapped in such a severe way from the stress of being slightly different and the effect of the teasing of the perfect kids. He was slightly different and his life has been ruined by the bullies. 

Now, I know many many kids like Big Bro, Big Sis and all of their teenage friends who would never tease someone different in order to make themselves fit in more with the cool kids. I guess that's because they are not insecure and they have the right people in their lives making them feel good about themselves and teaching them to help others to make yourself feel better, rather than demeaning others. My dad says bullies are the product of bad parents and they are to blame. I think he's right for the most part, but I also think that if I saw a schoolmate being bullied, I would help to stop it. So, I wonder why so many kids, teachers and parents don't step in to stop bullying when they see it. It's not really that hard to notice. I don't think we can ever fix the bad parenting. It reminds me of a quote from the movie Parenthood where Tod with one D, states "You know, Mrs. Buckman, you need a license to buy a dog, to drive a car - hell you even need a license to catch a fish. But they'll let any (insert bad adjective followed by bad noun) be a father" Tod is right, bully-makers will continue to do their poor job at parenting, unleashing the jerks of the world upon us, but we don't have to accept that. I beg of every kid, teacher, coach and parent to pay attention and step in when they see a bully or when they see someone teasing. Don't yell at them, but talk to them. Tell them how that makes people feel. Tell them they don't need to belittle someone else to make themselves more secure. Give them what their parents are not, and you might just save their life and the life of someone who is slightly different.

Sunday, April 6, 2014

Great Expectations

I went to a party last night for my grand mom's and grand pop's 50th wedding anniversary. There were lots of people there who have been married for a long time. My other mom-mom and pop-pop also have been married 50 years. Uncle Dan's parents are about to celebrate their 60th. There were also some of my younger cousins there who just started their journey or are about to. I wondered what they all thought their experience would be like, compared to what reality handed them. Look at the two clueless twenty-somethings pictured here. They look pretty happy. They had great expectations, none of which even remotely included my situation or that of my brother's. But, had they known then what they know now, they would have still gotten hitched. You see, it's not at all about what you want that makes for a long and successful union, it's how you adapt and deal with what fate's adventures come your way. I know I will probably never get married, but I certainly look forward to being part of the adventures mom and dad may have around the next bend, some of which I will most likely create for them. So to anyone starting their adventure and to those waiting for their next one, remember that sometimes the greatest expectations are the unexpected.

Sunday, March 30, 2014

Sink or Swim


I competed in an ability swim meet yesterday with lots of other kids like me and it made me think of how fortunate we all are to have parents who encourage us to get out there and do as many things as we can. Even things everyone thinks we can't do. Too many parents are over-protective, even those of typical kids. It's fine to look out for us, but sometimes you just have to throw us in the pool, or push us down the hill, or whatever adventure pushes us beyond our limits. I was born with a pretty messed up brain which was supposed to make me incapable of doing almost anything. My parents ignored that and just included me in everything they did. If they hadn't, I don't think I would be swimming or skiing or doing any of the cool things I do. Not everyone is as lucky as me, but everyone has the ability to do something, you just have to try, or be pushed to try.

Friday, March 14, 2014

The Elliptical Man

Sounds like an  Arnold Schwarzenegger film doesn't it? The title of my blog today refers to a recent facebook post by my friend Cait Waxler who runs the Ability program at the Ambler YMCA. Read it here and share it and encourage some folks to donate to the Y on behalf of Cait so she can continue running great programs for kids like me. I'm selfish that way.

Briefly, the Eliiptical Man story is about a nice man trying to work out, who takes the time to be nice to a special needs teen on the elliptical next to him, probably at the expense of his own workout. If you haven't ever spent time with a kid like the kid in the story, think about another Arnold film where he asks the kids "Who is your Daddy, and what does he do?" Now imagine a kid asking you that question repeatedly every 5 minutes. I know this is an exaggeration, but repetitive questioning is a real thing with my friends with Autism or Aspergers. No one really knows why they do it, but they do and while some people see it as an annoyance, others like the Elliptical Man see it as a chance to treat someone special like a normal person. With no training at all, Mr. Elliptical was even helping the boy by engaging him in conversation about his questions which is one of the ways professionals deal with the situation. That's not why Mr. Elliptical is a hero. He's a hero because he gave up some of his time for someone who needed it more. Not everyone does that these days. There are plenty of people in the gym who complain about the music or complain about not getting their favorite spin bike or complain for the sake of complaining. These people are lucky to have their own world to live in. Mr. Elliptical lives in the real world where different people live and sometimes you need to think of others and not yourself. Fortunately, there are lots of people like Mr. Elliptical and Cait Waxler who live in my world, and I promise to use this blog to promote them as much as possible.

Sunday, March 2, 2014

True Grit...

I'm tougher than you big-guy!!
No, I'm not talking about the John Wayne movie. BTW, did you know that John Wayne's real name was Marion and that he could have fought in WWII with some real tough guys, but chose to make movies instead. Well, if it's any consolation to fans of the Duke, he did his own stunts....meaning he rode his own horse and fell on an air mattress once and a while. This blog post isn't to attack old dookie pants, but to highlight something I have noticed about toughness. Seems like we admire all of the wrong tough guys and never recognize true toughness. See Ray Rice...I'm sure his wife posed a real threat before he knocked her out. Or the Blade Runner, oh how I wanted him to be my hero. I can point to lots of other guys like Ray and Oscar, but you get the point. Toughness isn't about how many yards you can rush for or how many movies you can make about tough guys. I see real tough guys every day. (note, by "tough guys" I also mean all the tough ladies I know) Toughness is being responsible. Toughness is the kid who goes to school every day even though the other kids pick on him. Toughness is the student who stands up for the kid getting bullied. Toughness is being honest. Toughness is the sister who doesn't get embarrassed of her handicapped little brother. Toughness is the single mom who works hard and raises her kids not to be buttheads. Toughness is the couple who help a child in need when they don't have one of their own. Toughness is speaking your mind when your opinion is not popular. Toughness is the kid with cerebral palsy who struggles with every step and still keeps a smile on his face. Toughness is the parent who keeps a positive attitude while slowly watching a child who is going to die. Toughness is the teen who still tells his parents he loves them...in public. I can go on and on. True Grit is around us every day even though we continue to praise the wrong tough guys all the time. Look around you, and you will be amazed at all the tough people around you who go un-praised every day. Got it...Pilgrim :-)

Sunday, February 23, 2014

Siblings Sleep Late....


I've been up for 4 hours on Sunday, and my siblings are still sleeping. I think it's because I wear them out. They very reluctantly tagged along yesterday for a day trip to Philly to get me out of the house and to take a tourist bus ride through the city of brotherly love. Yup, even though we live here, we
acted like out of towners. As you can tell from Big Bro's face in the picture, they weren't too happy. At least no one they know saw them and knows they were riding the open top bus through town like tourist nerds.... Not until now that is. This got me to thinking about my great siblings and all of the other siblings out there who are lucky enough to have a "special" brother or sister. I mean, brothers and sisters are great to have if your "special" or not, but siblings of special needs kids like me are a little different. They may complain a lot, but they do things that many kids their age never imagine. They deal with some stresses that adults would be challenged with, and all the while, they continue to impress and succeed and overachieve. My Big Bro got accepted to American University this week, his "first choice" college. He was also accepted to every other college he applied to and received scholarships and invitations to special honors programs along the way. I am proud because I know I played a part in his success. I helped make him who he is. My Big Sis is the same way. Quietly overachieving throughout the chaos of our family. She won a prestigious American Legion Award when she graduated middle school. The award is given to one boy and one girl from the class for their strong demonstration of character and good citizenship. Those who receive a medal must exemplify six qualities that define character: courage, honor, leadership, patriotism, scholarship and service. I know that with my little messed up brain, I couldn't help her with patriotism or scholarship, but I definitely helped her with courage, honor, leadership and service. Siblings of kids like me should be noticed more for all of the unwanted stuff they need to put up with and for all of the caregiving they need to give to someone who can be quite difficult at times. These are the people that this world needs to be its future leaders and thinkers. So, to all the siblings of special needs kids out there, I applaud you even though you don't seek applause. Please share my blog with anyone who deserves a little applause, and next time you see a family out and about with a special needs kid, give their brothers and sisters a thumbs-up, they'll know what it means.