A Three Week Illness, a White Ink Tattoo and the Wit of a Second Son.

Just before the news report came out that the “man-flu” and it’s severity is a real thing, the 15 year old man-child was sick – nasty sick to the point of him doing school work at home for 2 weeks and staying home a full 3 weeks going back slowly with a couple of half days before he was able to be there all day once again. No school, no hockey and a ton of nasty, icky, feverish misery. My boys and I rarely get sick and I never had a glimpse of what this guy was like when he’s under the weather until he hit the teen years. Boy does he ever make his brother look like a gem in sickness circumstances.  When the older, almost-man is sick, he declares that he is dying and that he needs to go to a hospital. After a rational conversation, he understands that he is not gravely ill and proceeds to shut himself in his room with juice, water and crackers and he sleeps – sometimes for 24 hours. When he is better, he comes out of his room, declares that he is not dying anymore and congratulates himself and resumes being himself. Not so with the man-child. He is a groaner, a crawler (yes, he has been known to take to all fours when feeling lousy) and he grumpy cries. He is impatient as he expects to heal like Wolverine. He cusses under his breath, uses every blanket in the house and germs it up without a thought and generally is so down and out that he can literally sink you like a ship with a gaping hole in it’s hull.  No two children are alike, which when coming to dealing with sickness, is too bad for me.So in light of his illness and my plight as I come off a long and draining 3 weeks of nursing him back to his old self, I decided to get back to myself  by reflecting on his unique sense of humour.

Logan has had to grow up fairly quickly because being just 2 and bit years younger than a brother with autism, his mom and dad sometimes had their hands full with him and Logan learned to wait and when he did feel like he wanted to wait, he had to learn how to take care of whatever he needed that we could not readily provide. On the one hand it pains me to think of these times but it has made him the great guy he is today. I remember being on the phone with a therapist for Adam and I heard this screeching across the kitchen floor only to find my little tank pushing his high chair to the freezer, climbing up onto the seat and getting himself his frozen milk and making his way to the microwave to warm it. At that point I told the woman on the phone ” I have to go, this is taking too long, my baby is raising himself. It’s not fair,” That day, I made a decision that our family was not going to be autism central but as “normal” a family as possible. I wanted to do all I could to meet Adam halfway and encourage him to do the same and  enjoy the world with us and I also wanted to give Logan a life that did not mean he always would have to take a back seat to Adam’s autism. We are close, the man-child and me and we are so lucky to have him in our family. I remember how he would talk about his life in heaven, before became to us and it would leave Tom and me in tears, we were laughing so hard. One day he told me he was forgetting what heaven was like and I asked him how he came to choose us as his family and he casually said, “Well, it’s not really like that Mamma. You go where they send you, you know?,” He gave me a little sideways glance and raised his eyebrows and went on playing with his toys and I just sat there shaking my head at this little cherub’s comments. In  all the humour, I had a great belief that this guy was really an angel sent to our family.  I remember being at my wit’s end trying to figure out why 4 year old Adam was upset. He had been crying for a long time and he had very little language at this time and I was impatient with him, alone in a house with two little children and I couldn’t take the noise anymore and I raised my voice at him which made him cry more.  Then I felt a tug on my shirt and it was this little white haired thing with these dark green eyes staring at me. “Hey, you scaring him Momma.  Him just want sketti” He rubbed my arm with his soft, little, meaty hand and I proceeded to boil spaghetti, serve them up and Adam stopped crying and all was right in our world. After that strange, eerie and miraculous evening in my kitchen in Calgary, Logan had the remedy more than not for what ailed Adam. “Him want posicle” or “Him want pwetsel” and I was game to always have whatever the food item “Him want” in our pantry.  So yeah maybe Logan had a unique way of using his brother’s mood to get what he wanted but it was always so strange that he always knew what Adam wanted and for a toddler always had the right words for me at the right time…those dark, desperate times of trying to figure out the simplest things that were the most complex things with Adam.

The man-child was also no lacking in humility or confidence when he was little. He was the kid who would say “Um hmm, I know” whenever he was told how cute he was. And if you asked him how come he knew that he would look at you like you were foolish and say “People tell me dat all time and I bleeve em,”

 

He was our dancer, our acrobat, our mischief maker, our shadow, my yoga partner and he went through a phase where I called him my third boob as he clung to me in his swimming classes for dear life. Needless to say, he was no natural swimmer like his older brother – he tended to sink like a stone and we had to trade in the Mom n Tot classes for one on one classes when he was a bit older and even then he was convinced Sandy, his teacher was trying to drown him.

In this home of the bizarre because of Adam’s autism you need to have a sense of humour. I lost the full extent of my humour when Adam was diagnosed. I have lived a life of worry, stress adn not so happy days but fortunately for me and Adam, Tom passed on his sense of absurd to Logan. These two buffer the shit that autism can stir up at times and Tom has made our lives very fun and normal and un-special needs as possible and it has done us all – especially Adam – a world of good.

We have laughs with Adam, too because he operates on the bare bones of everything. He is very black and white, cut and dry and it is what it is on a daily basis for him, so you can just imagine how many moments we just burst out laughing just by the way he approaches life and puts us in our place as he brings a new perspective to the way we”humans” as he calls us, see things. But with Logan, there is such a blend of things at work within him that just comes out of nowhere and chops down a tree of seriousness with a blow from his ax of wit.

Tom likes his Uniqlo undershirts as they keep him cooler under his dress shirts. The material they are made of has a sheen to it and so one morning when he was dressing, unbeknownst to us, Logan was propped up against the bedroom door frame checking out tom’s shiny threads tucked into his dress pants.  All he simply said with a curious tone that also had a hint of warning that the look before him was not good, “That your shirt?”  We started laughing and Tom explained it was a fancy new undershirt with high tech material etc. And Logan put his hand up and said “That’s all good…as long as it’s not a new look,”

It was the same tone he had when we had the card at Disney that allowed us to pass Fast Pass with Adam if a line for an attraction was way too long, or in case Adam was having a hard time.  Logan is a repeatx5 Roller Coaster/ Thrill Ride rider and wanted to go with Tom on the Tower of Terror again and knowing using the card for him was kind of bending the rules he asked us, “So…you want me to jump up and down on the spot or bite my hand? (two of Adam’s stims at the time) I can play the role of Adam if anyone needs proof. I’ve watch Adam a long time; I can do this,” Again the delivery was just too much not to laugh.  When I forget where I park my car and he’s with me he’s calmly but with a stab has said “see this is how you win a ticket from me to Quinte Gardens.

I’m not going to be living here and I might be off somewhere playing hockey when Iget the call that you are walking around here trying to find your car.  Dad will be in the scooter back at the house and then what you will have to call Adam who may or may not take your call….that’s a death sentence. You’re gonna have to go to the home for your own good. You won’t need a car. They have a bus, You have long term care insurance to pay for that. It’ll be  good.

Man-Chi    

 

One of my favourite Logan lines was when he was standing for a guy at the movies. Apparently his buddy was grounded and there was going to be a situation where a girl was really going to feel like a third wheel and that was disastrous in Grade 8 so someone suggested they call Logan James to fill in. It was a movie he wanted to see and he was game to go. When I asked him if he had money to buy the girl something to drink, he looked at me and said “Daniella, I’m just standing in for a guy. This is NOT a date. Yes, yes I hear you telling me you are asking me to be polite and buy her a Starbucks…but I’ll be polite with your 10 dollars, not mine”. And so I had to fork over a ten that afternoon. What a cheapskate!

Recently their father and I celebrated our 20th anniversary and I wanted to get a tattoo with my wedding date and I was asking Logan what he thought. He asked me where I was going to put it and what colour etc., and he thought it was cool and was even helpful in covering for me when I went to get it done so I could surprise Tom.  Days later when it healed, he was already sick like a dog with Mono (no he did not get it from kissing a girl – we did the time line to be sure) he looks at me and said that he really did like it then after a long pause he looked at it and said “Hmm…..can’t wait until the next argument and you start getting all pissed off and you regret getting the tattoo.  You’ll have to get him to tattoo void over it or maybe put a dash and the end date of the marriage…Ohhhh…Just kidding Mom. I’m sick you can’t take me seriously,”  I am glad I don’t have to take him or his father seriously all the time.  We need their humour and their sarcasm. They are our family’s laughter and our joy and the reason we can look at ourselves and our far from ordinary and sometimes maddening lives and have a good chuckle.

                

Stay as witty as you are my man-child. You came to us so that we can be happy and lighthearted and you do your duty everyday.You are an angel sent from Heaven to us. We are lucky and ever so grateful for the gift of you.

 

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The Meaning of the Word “Special” in the Special Olympic Games

“The genesis of Special Olympics was a summer day camp that Sargent and Eunice Shriver started in the backyard of their Maryland home. In July 1968, the world witnessed the first International Special Olympics Games at Soldier Field in Chicago.” (Special Olympics Website)

red-ftr-logo special o logo

When my son’s speed skating coach put our son in his first Special Olympics event he was just 8 years old.  She told me she saw that he was capable of learning how to race and in time he could become a great competitor.  What I heard was that he was good enough to compete with people with special needs and that he would race in an easier category of games.  Dealing with Adam’s diagnosis was the biggest blow to my husband and me as parents, hearing that he was good enough to compete in the Special Olympics was not as heavy a blow but it was confirmation that he was different and that there was a place for different.  I would be lying if I said it didn’t bother us a little. What I couldn’t see at the time was that having a place for different was very good thing. What I did learn, was that different, over time, could learn to perfect a skill and that natural talent could be turned into something fulfilling, something to be proud of and something remarkable that amazes us every time. Thankfully, in spite of ourselves and those initial unfounded feelings  we decided to take a shot at having him join the Special Olympic Program and compete in the games.

His first race day came and we suited him up, explained over and over again what was going to happen and what he had to do.  We told him that his grandparents and little brother and we were there to cheer him on and all he had to do was skate.  He started to fuss and cry and instantly my husband, being the caring and protective father that he has always been was ready to pull him out and take him home.

first race

“He’s not ready, ” he said.

“He has to get ready sometime.  We have to at least try one race,”  I urged.  My husband shrugged and unwillingly joined his parents and our younger boy in the stands.

“Adam, are you scared?  Are you a little nervous?” I asked him.  He stopped fussing and looked at me with his glassy, big, brown eyes and gave me a slight nod.

“How about you wear your bike helmet instead of the racing helmet they gave you?  Would that feel better?”  Another slight nod.

I swapped the helmets and kissed him on the cheek.  “Now listen.  You are fine.  This is the ice you skate on every week. Just skate and keep going until someone tells you to stop, ok?”

He didn’t nod or say anything but I could tell he was more comfortable.  I remember that first race like it was yesterday and it still makes me smile.  It was the birth of the chants “Go Adam Go!”  “Keep going buddy!” and “Skate hard, skate fast Ad!”  Our little autistic boy skated right to the finish line and crossed in first place in his first race.  His coach ran up to us beaming and said “He did it! And he’s only 8!”  Race after race that day, Adam crossed the finish line in the top three and got the taste for competition and fun.  It was on that day that our family learned the meaning of the word special in Special Olympics and the warm feeling it created inside me and it was a feeling that has stayed with me for 9 years and will stay with me forever.

“Emanating from the mission, the ultimate goal of Special Olympics is to help persons with intellectual disabilities participate as productive and respected members of society at large, by offering them a fair opportunity to develop and demonstrate their skills and talents through sports training and competition, and by increasing the public’s awareness of their capabilities and needs.  The Founding Principles support this goal by emphasizing that people with intellectual disabilities can enjoy, learn and benefit from participation in individual and team sports, underpinned by consistent training and by competition opportunities for all levels of ability.    According to the Principles, Special Olympics must transcend all boundaries of race, gender, religion, national origin, geography, and political philosophy.  They also state that every person with an intellectual disability should have the opportunity to participate and be challenged to achieve their full potential, with the focus at community level to reach the greatest number of athletes, strengthen their families and create an environment of equality, respect and acceptance.” (Special Olympics Website)

The Special Olympics events are not about competing with a disability or a challenge.  It is about competing in spite of them.  It’s not about competing at an easier level but about competing at your highest level and over the years I have seen athletes in division 4 persist and find themselves competing at a division 3 level the following season, each season inching closer to a more challenging division because when athletes with challenges are encouraged to achieve their personal best, the sky is their limit. The Special Olympics Program is about inclusion, expectations, goals and the freedom to participate at one’s best in a sport (or sports) one loves.  It is about achievement, pride, sportsmanship, freedom and most importantly it is about fun.  The Special Olympics is about teaching anyone willing to learn that given enough patience and time, everyone can achieve greatness and everything is possible when an opportunity is given, when words of encouragement are spoken and when there is enough support. It reminds parents and coaches and volunteers that there is so much good and so much talent and joy in each of these athletes and it makes us dig deeper within ourselves to do right by them by finding the energy  and time and love to give them the training and support they crave.

Our son Adam found his freedom in sport.  It is a release valve for him from all the pressure he must feel when he has to cope with the daily goings-on in his world. It has allowed him to be a part of not only the Special Olympics team but a part of his speed skating club and high school track team. The inclusion and sense of purpose Adam gets from his sports have given him so many positives to draw on in his life. Before he joined the Special Olympics program, I did not know if Adam would find his niche in the world. We never thought he would find his passion and because he plunged into a deeply private, puzzling and exclusive world his father and I didn’t think we would be able to find a life line strong enough to draw him back to us.  Now here we are, proudly watching a young man who used to be such a lost little boy cross numerous finish lines, with incredible times and speed, breaking records and standing on podiums proudly wearing his hard earned medals. What a long, winding road it has been! What a great journey that is going to keep going way past our lifetime as parents.

The Special Olympics has given him the opportunity to make friends, to travel independently of us and the opportunity to perform at his very best.

 

Our boy is FAST and now that he is older, his ability means something to him and I believe he is very proud of himself.  He is okay if he doesn’t win (well, sometimes he’s a little frustrated with himself when he loses) but he certainly understands and appreciates participation as much as he appreciates being on the podium. Adam has represented his club, region, and province in speed skating and for the first time he represented his province in track and field.

These games are a pleasure to watch.  They are as competitive, fast and exciting as any competitive games that exist and the athletes are well trained and possess the physical attributes to compete.  It is fulfilling to watch people of all ages, sizes, shapes and challenges come together in the spirit of friendship and competition.  There are smiles before, during and after each event as they race before their friends and families who cheer loudly and proudly.  Expectations are high and every effort is applauded.  I have never been to an event more encouraging than a Special Olympics event. I am so grateful for these games for what it has given to my son, his fellow athletes and families like ours. Adam is going to compete for years to come and he is going to experience that joy and accomplishment every time in both the summer and winter games.

 

blog 10     provincials with dad

To me, the word “special” in Special Olympics does not mean disadvantaged in any way.  It is more of a description of the feeling you get when you attend these games.  There is a warmth and feeling of goodness at the venue and there is an aura of happiness because win or lose, these athletes know they have worked hard, have overcome many challenges and have given their best effort to get to the games and their sense of pride and confidence is so high it creates an infectious feeling of goodness.  I encourage everyone to visit the games when they are in your area and see for yourself why it is so important to keep these games alive year after year. See what the games can do for you.

http://www.specialolympics.org/RegionsPages/content.aspx?id=40725

Go watch. Go cheer.  Go be amazed at the Special Olympics.

I’m not the only parent that feels this way. Read more about the effect the Special Olympics has had on the lives of athletes and families worldwide.

http://www.specialolympics.org/SimpleStories/SimpleStory.aspx?id=42527

See what the games can do for athletes with Intellectual challenges all over the world.

http://www.specialolympics.org/RegionsPages/content.aspx?id=39851

http://www.specialolympics.org/Responsive/Ashley-Setting_Goals.aspx?src=homestorylist

http://www.specialolympics.org/Responsive/Revolution_for_Unity.aspx?src=HomeStoryList

As parents and care givers we have fear.  Can a person we know with an intellectual challenge learn a sport?  Will they have difficult behaviors borne out of frustration during the learning process? Are they coach-able?  There can be so many questions and technically they all originate in fear – our fear.   Then there are parents and caregivers who have given up and honestly, that is understandable. Raising and caring for someone with special needs is exhausting and complicated but wouldn’t it be better for everyone concerned if the person with the challenges has an outlet…has something to look forward to…has something new to learn with goals to set and achieve?  Wouldn’t it be great if they were able to leave the house and travel with their team for a few days?  Wouldn’t it be rewarding for everyone involved to see the person soar?  The answer to all those questions is YES.

Don’t be afraid. Here’s how to get someone with intellectual challenges involved in the Special Olympics.

http://www.specialolympics.org/Common/Special_Olympics_A_to_Z.aspx?aspxerrorpath=/Sections/Who_We_Are/Our_Athletes_2.aspx

Thank you Sargent and Eunice Shriver.  You have changed the lives of countless intellectually challenged persons and their families for the better over the years and for years to come. As Adam’s mother, I am thankful you did.

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