To C: You Will be Missed but Not Forgotten

I have a heavy heart this week. I just came off a heavyhearted October when we laid Logan’s friend’s sister to rest and this morning I found out Adam’s friend and former classmate died suddenly yesterday. She had a medical condition that rendered her to a wheelchair and she had special needs but she was, we thought okay.  She recently graduated from high school where, like her Life Skills classmates she stayed until she was 21.

As I got to know Adam’s classmates, I realized they all wanted what ever teenager/young person wanted – to hang out with their friends without parents hovering. So I started inviting them all to join Adam at a restaurant once a month, or go bowling or go to the movies. They loved it! They were just friends, hanging out with no parent interruption and they were just like everyone else.  C came out a couple times this year and she had a great time. She had a sweet giggle and she always had her make up on and her pretty little painted toes. This afternoon, Adam was going to text her and invite her to his birthday dinner next month. His teacher called me this morning with the news and we both were sobbing and she and I decided that she would tell him first and then later this afternoon Tom and I would tell him again and help him understand that she is gone.

Adam is autistic and struggles with emotional display but he showed compassion towards C. He was concerned whenever she cried and he tried to make her feel better. They did their Co-Op at the food bank together and she ventured out to that commitment partly because Adam was going to be there with her. I think C was one of my son’s true friends and we will miss her. At least, we have one photo of them together and I will frame it for him so he will not forget her.

I am torn up by her passing because once again someone who represented all that is good in this life has been taken from my son and from so many people. I feel for her mom as I know how much she sacrificed and how hard she tried to give her daughter the best possible life and now, just before Christmas she is gone. My second boy, Logan, in his attempt to comfort me and make sense of yet another young person’s death, said,”I believe in my heart she is already back. I believe she has returned in the form of a newly born human. She will grow with no health problems and she will run and jump and dance and she will not be sitting in a chair anymore. We may even recognize her in someone else,”

I hope my son is right. I also hope if her spirit is soaring, that she soars about her friends and that she finds Adam, and sits on his shoulder and that she guides him and watches over him and helps him as he moves into adulthood. I can’t stop crying for the loss of C and there will be an empty space at the table next month but they will raise their glasses to her and she will not be forgotten.

Rest in peace C. My son was your friend and he really did care about you and I know you cared about him.

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When Some Lives Are More Concentrated Than Others.

On November 6th , Logan opened his text book and froze when he saw her name written in her handwriting. She went to his school a few years before, took that class and wrote her name in that textbook. Just one week prior, we bade her farewell. The young woman who passed was Logan’s friend’s sister and she died way too soon and approximately 10 years after her older sister died of the same disease.  In his life, my 15 year old has been to three funerals and two visitations and this year death stunned him twice when two young people he knew, both of whom attended his school, passed away. At the start of the summer a young girl who went to his school passed away on a popular high school graduate trip. She was quite unwell with flu-like symptoms and whether due to dehydration or a combination of her symptoms, she stopped breathing, her heart stopped and she died. She died  when her adult life was on the eve of being born.

At 15, when someone young like you dies, it pauses life as you know it. To a young person, the death of a peer means a suddenly discontinued Snapchat streak, no more Instagram posts ever and tons of comments and likes the person will never see and though their social media accounts can still be seen by all, they hang there, inactive and heavy.  Images live on in social media but the lack of activity is a haunting reminder that they were deleted from life and it is unfair and shocking and hard for young people to understand. Young people are supposed to feel invincible.  They are supposed to have big dreams and plans and send snaps and post selfies on Instagram and have hissy fits about unimportant things. They are supposed to try and convince their parents to let them do stuff and go places. They are supposed to argue, slam a door in frustration, eat all the food in the house, always need a ride and when they finally get their license, always need to borrow your car. They are supposed to try and fail and achieve awesome things that make parents and teachers and coaches proud. They are supposed to find everything embarrassing. They are supposed to be awkward, be curious, push their boundaries, test our patience and become socially active. What they aren’t supposed to do is get terrible diseases and die. They aren’t supposed to go on a vacation and return in a casket.  Death should only be for the very old – but it isn’t and as a parent it pains me to see another parent lay their baby to rest.  I have no idea how one moves on from the death of a child and I hope I never have to deal with that. I have dealt with a lot in my life but I fear losing my children is beyond my strength.

The day after the funeral, I learned my school friend also put her baby to rest. She is a woman of great faith and she has weathered many storms. Her husband passed in their younger years, she found the strength to raise her kids on her own and if that was not enough, the disease took her baby boy as well. What is amazing to me is the strength and acceptance in these people who did the unimaginable.  From my friend’s posts, I felt a strong serenity within her. There was a feeling of gratitude for having been blessed with her son and to have been a part of his wonderful yet short life. From her posts I learned of the kind soul he was and that he had a wife and a son and another little angel on the way whom he would never meet. What I would ordinarily view as sadness I saw as blessings, gifts and hope because of my friend’s disposition regarding the situation.  So much loss was interpreted by her as an abundance of blessings for which she was extremely grateful.  Then I remembered watching the moments of the funeral I attended with Logan. I heard of all the wonderful things this young woman accomplished in 20 years. I remembered all the photos of her having fun, doing gymnastics, singing and she was laughing in ever single photo. I was so in awe of her boyfriend who played the guitar and sang about 4 hymns at her funeral and  then he sang the hymn after communion which was in essence a song about how much he loved her.  At just 20, this young man showed more character and strength than men twice his age and I was honoured to have the opportunity to witness him in his moment, albeit a moment of grief. The moment that grabbed hold of my heart and squeezed it was watching Logan’s friend’s dad carry his baby girl’s urn in his hands. Eyes red-rimmed, he still had that face – that pleasant, happy face, with that sweet grin. I saw his pain as he walked past the pew I was in, holding the small box that contained his baby’s ashes – holding it almost like he did the day he brought her home for the first time, I would imagine – he held her in his hands and he tried to make the lyrics to the recessional “Lord of the Dance”, escape his lips.

Young people, young parents and young spouses should never die. Dying should be for the very, very old.  Eyes should only shut forever when they have seen many, many, many years. Minds should shut down only after they have passed on wisdom to countless others. Hands should cease to create only after we have built sturdy kingdoms and only after we have molded and shaped the lives of many. Feet should cease to carry us and only after we have walked millions and millions of miles that justify our weariness and need for rest. We should all have long, eventful journeys but life isn’t always  generous. However, life is truly how we live it and what we do with out time. Life is directed by the choices we make in the situations presented to us. The journey can be eventful, rewarding and happy no matter how long it is.  I learned that at the funeral and I learned that by my friend’s disposition over her loss and I learned that in all that was said about the young lady who died just after her graduation. There was such a sense of peace within the families. Such acceptance and gratitude because they saw their children’s lives as a gift, a celebration and a blessing they were fortunate to be a part of. I still have a hard time wrapping my head around the loss of these young people and I can’t understand why one family had to go through this twice with both their girls but I did come away with something that helps me accept the harsh truth of death in lives so young.  The priest concluded tearfully but with a smile on his face that some lives are just more concentrated than others and it is when the young die, we realize this because the young live like they are invincible. The young approach life with energy and a sense of hope and fun. Young people live like there is no tomorrow and they are busy filling the hours in their days with things that are important to them. As we get older, sometimes that youthful thing that allows us to live like each day is our last, changes somehow and sometimes we waste our hours on the things that bring us no joy – things that dilute our lives. I think the young are on to something golden because there is much positive to be said about a concentrated life.

Logan was glad that he randomly got that textbook and not his friend because as he said, if it was hard for him to see her name, it may have been devastating for her brother.  I agreed with him to an extent but I also told him that her name written by her hand in that text book will be there forever and if indeed his brother does see it one day, it may sting a little from the pain of losing her but I also think it will make him smile and bring him peace, knowing that when you leave your mark on this world, no matter how small, you are present forever and you never truly die.

So while fully understanding and respecting the phrase, I choose not to say “rest in peace” to these youngsters but “may your soul live on”. May your names be revealed to other students in the text books you used. May your name appear etched in trophies and banners in display cases in the arenas and gyms in which you competed. May you be visible always to your friends and teachers in the class photos you took in school and may all the smart, quirky, crazy, admirable and goofy things you said and did be vivid memories for those who knew you and loved you, for this is how the essence of who you are lives FOREVER.

The pain and suffering of illness is over. Death is the pause between the physical life you had and the eternal life of your soul.  There is no permanent end, therefore there is no death – only life.

There is No Colour : Learning to Un-Learn

 

There Is No Perception of Colour in an Autistic Person’s World

 

Throughout his life, my autistic son who is brilliant has been perceived as being less so. The people that matter in his life, know the truth about him and I have never wasted any time trying to prove his worth to anyone not intelligent enough or anyone who is too self absorbed or frivolous to understand. Over the years of rejoicing through the great times and wading through the murky, thick mud of the heartbreaking times, I have come to know that the truth about both my children is beautiful.  In a time of chaos brewed by racism, terrorism and hatred I feel their father and I have managed to put a sliver of hope for better on this planet.

Two days ago sitting in a cloud of misery borne out of merely watching a half hour newscast, I heard Adam in the other room in full *echolalia going on happily about something that was happening in the Big Bang Theory which is the latest show he likes to binge watch.  His *scripting had something to do with the character Raj and I thought I would do a little test.  I called him into the living room and asked him what was going on in the episode he was watching and he proceeded to tell me how funny it was and that it was because Raj was saying silly things.  Feigning ignorance, I asked him which character was Raj.  He turned to go get his tablet in his room so that he could show me when I stopped him and asked him to describe Raj. What you have to understand is that Adam hates being pushed into descriptive language but it is something we are working on and I wanted to see what he would say.  He twisted his mouth, scrunched his nose and then he said,

“He is the tall one,”  to which I responded,

“So Leonard is …”

“Leonard is short. Raj is a guy,” he offered.

“A guy like Leonard and Sheldon and Howard?”

“Yes. Howard is short,” he replied.

“But I still can’t place Raj. Which one is he?” I pressed on.

Adam proceeded to say adjectives like tall, skinny, silly, funny, jokey…he never said that Raj was brown. Not that he does not know his colours –  I remember vividly when he was 5 and he was  learning colours he certainly realized that mummy was brown but that was it. It was an observation when he was 5 and to this day, Adam has never used colour to describe anyone because he has never associated a person with their colour – ever. I have however had to un-teach some of the derogatory words he has heard in school over the years. Words that sometimes were directed towards him when misinformed or rather poorly-informed kids saw that I was his mother. He would say the words completely out of context and I would have to spend weeks purging them from his vocabulary by teaching him in the most basic of terms that some words are just so very bad.  I hope I never have to un-teach him words such as those again but I shan’t be naive because this world is getting worse.

People who don’t know Adam or those who know him and have labelled him, will never see beneath the surface the way those who know him do.  He may have to struggle through some days sometimes because of his autism, he may have to do things differently to get by and he may have some days when having to adjust things to suit him or to keep him successful is a real pain in the ass for whomever has to make the adjustments but one thing is certain –  Adam sees people.  He sees their soul, he sees their personality and he sees their beauty because even with perfect vision my son cannot see their colour. There is a purity about him that I attribute to his autism that I wish every human had.  He knows what pretty is but he never calls anything ugly although he understand’s the meaning of the word. He does not place any emphasis on riches but he certainly understands that he has to help someone who may be poor. He is paid in self satisfaction, happiness and pride for every job he does and he works harder than most from beginning to end.  Hmm…autistic with a work ethic. Chew on that for a while.

I shake my head and laugh so many times when I think of the resolute therapists who incessantly repeated the importance of integrating Adam into the world by working on reducing or stopping his “inappropriate” behaviors and quirky actions so that in essence he could be more like other people in society.  I think it should be the other way around because I have seen what my boy sees.  I have laid beside him in that little playroom as I waited on him to meet me halfway; doing what he did, stretching out our hands to the light streaming through that tiny basement window, watching the little specs of dust dance between our fingers. I remember feeling a glorious release when we would roll down the hill at the playground near our house when he and his brother were little.  I remember the giggles and the all out raucous laughter, the smell of the grass and the feel of the dirt on my body. I’d forgotten the abandon of childhood and I am eternally grateful to my children for re-introducing me back then to just how much fun and how freeing life can be. I remember laying on our backs in that playroom staring at the ceiling, humming and becoming so relaxed that my body sank into the carpet as I was lulled to sleep by my little boy’s sweet voice.  We met each other halfway in that playroom – he, discovering the wonders of the world as I presented it to him; me, recognizing just how over stimulating and bombarding the world actually was. In that playroom where I taught my son everything he knows, I learned from him how to let the noise go, how to hear what was within me and how to tap into moments of peace.  Adam knows how to get back to his soul.  Even when it is most difficult for him he knows how to tap into that place of goodness, knows how to let go of all that has him tangled and twisted up emotionally in order to restore himself and dwell in a place of peace and love. Shouldn’t we all figure out how to do that? Think about how much less pain we all could cause if we are able to release anger and horrible, hateful or violent thoughts from our minds and hearts and return to a place of peace and love and restore ourselves and each other. Yeah, right…integrate my son into society as it is, my ass.  We should be so lucky to be more like him.

 

 

Learning to Unlearn

 

It is no secret that to me, my second son Logan, is one of the best people I know. My aunt Meiling would call someone like Logan “too mannish” because he is far too young to be this miniature man of integrity and depth.  He has a sensibility that I have not seen in anyone so young.  His ability to discern bullshit from truth is something I did not have mastered by the time I was a teenager and to quote my husband “Watch for our son because anyone who ends up involved with him will be beyond fortunate because of  the human he is,”

I have tried very hard to raise Logan to not see race, creed or colour.  It was easier with Adam being autistic but by the time Logan got to grade 2 he learned what colour was unfortunately.  Looking back on my own childhood, I would say I was lucky to have grown up in a multicultural, multiracial society and be raised by parents who had friends from all walks of life, all colours and religions but like Logan, when I was 5, even sweet T&T way back then had it’s structure and divisions that were somewhat subtle at times blatant at others.  I remember what living with that was like – bouncing in and out of acceptance, hearing derogatory racial slurs in conversations, in traffic, putting up with disgusting comments from idle limers as my mother and I walked by them. My childhood was a good one but there are things I learned about the world that I was determined to do something about.  I knew there was no way to protect my children from these lesser things but I could teach them to be better and also be better than me and those before them. It may be naive of me but I like to think if I could just put two decent and good humans on the planet, I could make significant change.

So with Logan, I also did a little test.  I was in the living room when his friend came to the door.  He had just come from work on the reserve and he made a crack about delivering watery gas to our door.  The boys bantered back and forth with little jabs about each other’s ethnicity and then went out to grab a couple lemonades from the store.  When he got back, Logan joined us to watch the unfolding of events in Charlottesville and he was, like we were, disappointed in what we were witnessing.  Pausing the broadcast, I told him that I had something I needed him to do for me moving forward in light of all the hate and racism in the world.  I asked him to stop the light jabs among his friends that had racist tendencies.  He assured me they were all best buddies and no one took anything personally but I counteracted his point by pointing to the television.

“It can start with simple jesting and it can evolve into this,” I told him. “We say stuff among our friends and no one is really offended so we accept it and then it gets a little more pronounced and we accept that too and then we have a difference of opinion and someone says something in anger and even though things may cool down and you are still buddies, it was blurted out and there is a dividing line in the friendship.  We cannot accept racism and lighthearted racist ribbing is not to be done anymore. It is not accepted and if you end it, it will end in your circle of friends.  The same way you do not tolerate the use of the word retarded to describe mentally challenged people, you must not participate in or tolerate racist jokes or jabs at all,”

My boy looked me in the eye and told me he understood and he would change it. Two days later when the friends were at the door, I was in the kitchen and one of them greeted the other with another native joke and my boy said,

“So, here’s the thing.  We can’t do that anymore, okay? My mom spoke to me about it and I agree with her.  She wasn’t mad or anything but she’s right. We are friends and we don’t want to get into talking like this so no more racist jabs. We cool?”

I heard the pseudo-manly voices echo in agreement and just like that they went down the street in front of one of their houses and started shooting hoops.  I didn’t tell him I heard them that night and in the car yesterday, Logan told me that he spoke to his buddies and they all agreed not to make anymore dumb jabs about race.  He said they actually agreed they didn’t really know why they were doing it.  They didn’t think it was funny and they didn’t really like it. I know Logan has struggled with the answer to the occasional question “So what are you? “from some idiot after they realize I am his mother.  Today he answers quite simply, “Human….a guy… a person,” and if they persist he suggests they “might want to do some travelling…read a book…get exposed, eh?”

There is so much going on now in the world. Our time is as filled with turmoil as it is with bliss – sometimes it is so overrun with turmoil that we have to do all we can to find bliss so that we can hang on to a shred of decency and sanity.  I am in the middle of my life and one day it will draw to an end but my children’s lives are just beginning and I can see that so many young people are trying hard to hold on what is real, to what is pure and what is true. It is an uphill battle and I understand why so many of our youth have difficulty coping with life as it is. They have so much more to deal with than we did and everyday they try to separate what is good about living in their time of technology from what is heinous and all I can do in my middle age is try and stay abreast of it all and not criticize them or compare their time to mine but truly support them however I can.

If there is one thing marriage and parenting have taught me is the importance of communication. In all my years of raising my boys I have never talked and listened more than I do now.  Every week there is something I learn that was not a part of my vocabulary.  Forget learning French, German, Cantonese, Spanish or what have you, I have had to master “youth speak” in ways I never imagined and as un-cool as I know I am, my husband and I are the first stop when my boys’ world come crashing down around them.  Their father and I won’t be there for them every time it happens and one day we will not be here at all and I hope their coping skills continue to be strong.  It’s like my husband says, “Parenting is 50/50. We can only hope that they hold on to that fifty percent of what we instilled in them the question mark is what they do with the other fifty and we can only hope they have the strength of character to navigate it in the right direction,”

In Logan’s lifetime he is going to learn and experience many things.  Some will be great and some will not and he will have to choose between doing the right thing or the easy thing, the right thing or the popular thing and the right thing or the wrong thing. He will soar and he will crash and he will soar again and his life will roller coster on just like any other life. My hope for his generation is that they can learn from the mistakes of past generations as well as their own and that they can release or un-learn some of the things we may have carelessly and mindlessly taught them. I hope they are better than we are and better than their grandparents.  I hope they put humanity first and that they operate from a place of love. I hope their generation sees an end to terror and most of all I hope they un-learn racism and bigotry and learn acceptance.  Who knows, maybe…just maybe theirs is the generation to turn the world around and propel us upward from the downward spiral we seem to be on.

 

*Echolalia is the repetition of words or phrases with sometimes no meaning or function attached to them. … Sometimes this behavior is termed “scripting” because the words and phrases the person is repeating comes from tv or movie scripts.

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.

ribbons2adam recentribbons

 

 

 

 

 

 

 

 

 

Adam is 17.

Dear Adam,

This blog entry starts with a long,deep breath and the blinking away of a few tears.  Maternal emotion is at play as I reflect upon you, my son, my dear Adam, as you turn 17 today.  The overused saying of mine “Didn’t I just have you?” swims in my head as I write this and I am trying not to say it, as I know it provokes the usual eye roll from you and your brother, but I really don’t know where time has gone when I look at you guys.  I hope your childhood was long enough and filled with all the love, innocence, wonder and fantasy that all children deserve.  I hope your memories make you smile more than they do not and with the not so good ones that were our fault, as your parents, know that we are sorry, we hope you recognize we are merely humans and forgive us.

Disney-2011 and 2013

50977340007

Disney-2011 and 2013

I know you are not able to focus on my wordy entry but I know you will read some of it and look at the photos and recognize the music in the videos and one day someone may read it to you or you might even find the time later on in your life to read this long after I’m gone.  This is my medium and much like your music and art and sports, this is how I express myself best and I had to write this for you because I believe it is important to let people know how you feel about them.  You know, like that John Mayer song we would listen to. “Say“.

Looking at the photos of you over the years was my inspiration for this piece.  I have 17 years of fantastic photos of you, Adam, and I remember everything about the day each of them was taken.  One can never pinpoint the moment you go from being a new born baby,

Baby Adam

Baby Adam

to this person,

Adam the kid

Adam the kid

to this happy guy, the-kidmore-adam

How much and how quickly they grow and change

How much and how quickly they grow and changetall-boy-2tall-boy

all the way to being the young man who towers above me today.  But what I do know, is that it has been my great honor and privilege to witness it all.  Your journey was and to an extent still is a difficult one. It is not without it’s hiccups, challenges and frustrations and in our case worry and frayed nerves but you have handled it by trusting in my 50/50 promise.

under-the-smiles-worry

Under the smiles, sometimes there was worry.

When you were 5 years old, and I was trying to make sense of our family – trying desperately to hold on to all of us as we rode this tidal wave of autism, I promised you that we would come into your world and meet you half way, if you took our hand and came half way into ours. Thanks, Adam, for meeting us head on with courage, trust and determination.  People commend us for parenting you but we certainly could not have done any of it if you, my dear boy, were not a willing partner.  I told myself if you were happiest staying exclusively in your world, I would find a way to accept and be happy with your choice, but intuition, stubbornness and I’d like to think love, encouraged you to let me, Daddy and Logan into your life and I am ever so grateful you trusted us

IMG_0911IMG_0091disney-boys

and thought us worthy of your curiosity and time. Thank you for teaching us even more than we taught you.  By letting us in, you learned that all we wanted was for you to be happy and to include you in our family.  Your dad didn’t care about the things anyone said you couldn’t do, he just wanted to give you and Logan a joyful, happy life and he strives to make your lives happy and special every day.  I am sure we can all agree that Dad really knows how to make everything fun and you boys are lucky and blessed to be able to call him your father.

goofy-us 

Great Wolf Dad

Great Wolf Dad

I used to believe and say “Adam can beat autism”.  I have never been happier to be wrong and cast such a foolish thought aside. I know now that there is nothing to beat.  I no longer wish this condition was not a part of our lives.  I no longer wish it could leave you because without it you would not be the athlete-adamwinningmarathon-athletethe-athlete

elite athlete, artist or musician you have become. Our normal would be much like everyone else’s I suppose and we would be quite mainstream and ordinary. Now that I think about it, none of us in this family is meant to blend in, so in a weird way, your autism has made our lives perfect. If you did not have autism, you might have been ill with some horrible disease or maybe you would have been involved in some dangerous things, I have no idea.  But here you are, different, special, talented and perfectly peculiar.

Adam's Art

Adam’s Art

The Natural - Never had a lesson - Oh, SO good!

The Natural – Never had a lesson – Oh, SO good!

Whenever we took you to speech therapy at the Children’s  Hospital in Alberta, your Dad would say, “Look on the bright side, we get to walk past Oncology”. My point (and his) is everyone, every family has something – some struggle, some issue to overcome or live with and your autism, while a challenge for you and for us, has made us better people.  It has also made us very tired. worn down and frazzled people at times, but at the end of each day, we are better for it because you are worth it. Your autism has allowed us to meet many fabulous people and has allowed us to see the true colours of others.  It has forced Dad, Logan and me to think harder and be more creative, patient and flexible when trying to include you in our world.

Stacked

Stacked

"Just Dance" with Dad

Just Dance” with Dad

I know there were times we got it terribly wrong.  I know we (especially me) are hopelessly flawed.  I know I have not been the best mother to you sometimes and that I let anger, grief and frustration get the better of me but the one amazing thing that always helped me do better by you (and Logan) is that forgiving, welcoming and loving piece of you that not even the autism can hide.  You make me try harder at being the mother I need to be and can be for you guys and I think if you were not autistic I might have taken a lot for granted and we all may have missed out on the great things we get to experience through you.

So Adam, I hope you enjoy this photo story of your life.  From the moment you cried your first cry and stopped at the sound of your father’s voice and took his finger, to the first time I looked at you and held you, I knew you would take us down a path like no other.  You were alert and strong and ever so calm and even when the storm of autism rolled into our lives, there was something about you that spoke to every instinct I had that urged me never to give up, never settle and to always challenge you and push you and me for more.  It was what you needed as much as what I wanted and it is because of that drive we both possess, we are able to snub those who doubt your abilities, those afraid of your autism and who have let their hang ups and fear get in the way of them getting to know the unique and wonderful person you are. Adam, you have shown time and again there is nothing you can’t do and I urge you to keep tasting the sweetness of this world.  Go for things head on as you always do and embrace the joyful feeling of accomplishment. You are astonishing and impressive, my son and I know you always will be.

You have worked so hard at living and dealing with life everyday that you have been and will continue to be successful. Thanks for your kind of cool …

Our unique, quirky and cool Adam

Our unique, quirky and cool Adam

tries-anythingadam-horse

street-hockey for trusting us and trying all sorts of new and sometimes scary things …

beach-loverbeach-love-2 for loving the beach, the waves and having no problem getting sandy and gross … Thank you for being open to learning how you can lend a helping hand.

Adam helping out with chores

Adam helping out with chores

Thanks for showing me Grandad Barsotti lives in you by honing in on that gene that allows you to  sit and relax in true Trini/Barsotti style.

Now this is a Great Grandad and Grandad and Great Uncle Frank Barsotti sit.

Now this is a Great Grandad and Grandad and Great Uncle Frank Barsotti sit. Truly relaxed and ahhhh,,,

Thanks for coming out of your comfort zone and fostering friendshipsfriendships  and reaching milestones and going through rites of passage you didn’t have to, but showed us that you could.

Adam's confirmation

Adam’s confirmation

retaineracne We’ve see you through the retainer and the acne and we still suffer through your teen behavior and moods (although less so lately), trying to figure you out the best we can.  Thank you for learning how to control your emotions and understanding that we are really trying to help you through the difficult times.  Thank you for being open to Grampa teaching you how to drive the boat and the 4-wheelers and for understanding and accepting that while you drive them very well, unlike many teens, it is not driver  fishing 1driver-2 possible for you to drive a car.

your-zen  Thank you for your zen, your great personal taste and love of food …

Only Adam will order a veggie burger with bacon.

Only Adam will order a veggie burger with bacon.

Thank you for getting to know and loving your brother and for stepping up and being his big brother whenever you could …IMG_0722 freezie 1freezie 2

Thanks for the moments where you remind us that you are “in there” and at the end of the day, you are just another teenager rockin’ out at a concert.

Adam at The Script Concert in Toronto

Adam at The Script Concert in Torontoat-concert-2 concert-adam

Thank you for teaching us how to see life through your eyes … for showing us how to take the time to see the details we so often miss.  Thanks for dipping your toe, then your foot then jumping into the tumultuous waters of this bizarre world of ours and for letting us enjoy the quirky, alternate world that is yours.  Autism makes you, you and it’s okay to dive in there and hang out in it to connect to who you are.  Don’t let anyone ever stop you from submerging yourself into your world to comfort and take care of yourself.  We are blessed to have you. And anyone who meets you, should be honoured if they get the opportunity to get to know you. You matter to us and the world needs you just as you are. As we have promised to enter your world, I only ask that you continue doing us the kindness of coming out of it and joining us as much as you do now because we enjoy you and love having you in our world.  We love your smile. We love your laugh.

 

your-smile-2handsome-adam dancing-adamHappy Adam

We love you. You make our world complete.

Someday, Dad and I will be gone.  Where there is birth, there is death and that is why it is so important to live as much life as you can in between.  For the days when we are no longer here and you find yourself feeling not so great and maybe a little lost or unsure, remember you are loved. And remember you have Logan.  From the womb to tomb, as your mother,  I will always love you, the way only a mother can understand. Remember to listen to that tell tale song I would play in your room in Montreal when you were little – “Candle on the Water”  beautifully sung by Helen Reddy from the original movie “Petes Dragon“.

I never knew why I needed to pick you up and hold you tight as often as I did and dance around the room with you to a song that had such tear provoking lyrics. Lyrics that speak of someone lost who needs a help…needs a life line. It seems that way before your diagnosis, way before there was anything to be suspicious of, this song made me acutely aware that you would need something more from me. That you would need me to dig deep and fight and advocate for you.  Like this song was on that favourite CD of ours like an omen.  I knew it then and I know if you listen to this song anytime when I am no longer here, it will remind you that you are never alone and you will feel the comfort and love you seek.

Happy birthday 17 year old.  Just like in this other old favourite of ours,

I think I can safely say I am not worried about your future any longer because my boy things did get easier. Things did get brighter and dare I say we got it all done.

Love you forever.  So proud and in awe of you.  ~ Mom.

 

 

 

 

 

From Home Straight to Heaven, Making No Stops in Between.

*(This piece was written yesterday, September 9th, and just as I was about to post it, I had an emergency with my younger son.  He is okay and now that I am home and all is said and done, I thought I would post this, as the whole time I was sitting with my own child, my mind was also on someone else’s.)

I had so many plans for this morning, yet I find myself sitting here in my living room, my house quiet, my heart broken and a million questions and thoughts in my head.  I suppose I am fortunate to be able to write freely.  Words swim in my head all day long, ideas, memories, phrases, dialogue.  I have been like this all my life, so to me, it’s as normal as the dizziness and the neck aches that accompany the endless movement of words in my mind some days.  I am sitting here, tears flowing down my face and I can’t stop them because of the news I read on Facebook – that maddening forum that updates me on everyone and everything way too often, interrupting my day like chronic hiccups, yet I cannot leave it. I have had to pare down my friends to the people in my life who I need to stay in touch with – my friends who live in cities where I once did, my dear sisters from my high school Alma Mater, St. Joseph’s Convent, my cousins, my Trinidadian friends, some people from Syracuse University and Ryerson and a smattering of people in the community where I live.

Today I read that the son of one of my SJC sisters passed away.   I have known this woman since we were children in Maria Regina Grade School on Abercromby Street, Port of Spain, Trinidad.  She had always been this artistic, tall, beautiful creature with a huge smile and bubbly personality.  I don’t remember Leisel upset in school.  Ever. She was fun! She was life! … One of those unforgettable people and it was wonderful to be able to reconnect with her after all these years.

Time did what it does and we all grew up, some of us moving to different places, some of us staying in Trinidad, all of us going our separate ways, yet thanks to a 30 year reunion and two remarkable women who stop at nothing (Carla and Debbie) we were all connected by Facebook in a matter of months. Though we all could not attend, many of us did and the connection on Facebook strengthened the bond between those present and those present in spirit.  We were in each other’s lives again at an age when we were all fully women – no longer high school girls but women with lives that had history and stories of good times, hard times, times of real struggle, failure and success.  We were mothers, aunts, some were grandmothers, career women, friends, wives, ex-wives,care givers and no matter where we were, or what we did with our lives, we all had a common approach to handling the journey that is life.  We turned out to be an army of the strongest women I will ever know, whom, I feel I can count on always and as maddening as Facebook is for me at times, it has allowed my true friends…my sisters, to be just a click away.

I thought I’d be done sobbing by now, but I can’t stop, it seems.  In my head right now, I see us sitting in class in Form 1M, with a ceiling fan struggling to oscillate to keep us from melting in the Caribbean heat.  I can see Leisel next to Lucette facing the giant patio style sort of French doors that allowed them to look onto the school of our male counterparts at CIC (St. Mary’s).  I can see Lorna and if memory serves me correctly, I think Karlene was in my class too. In my mind I see us in the white blouses and strange sea blue, greenish ( I think gabardine) skirts we wore in our first year, before the material changed, white belts, our “washikongs” powdery with Whitening and white turned down socks.  Young girls dressed with so much white, perhaps to maintain some purity of spirit and mind as we teetered on the brink of becoming young women.  Who knew that in one class 4 of us would mother children who were special.  Knowing what I know of people’s lives, who knew one girl in our year would not live long into adulthood, or that others would have to fight terrible illnesses, deal with difficult marriages, deal with judgement from loved ones, would lose a spouse and another girl just a year ahead would lose her adult daughter in the most tragic of ways.  Where was that crystal ball?

Life is a strange, perplexing, meandering river.  As we float from bend to bend, we sometimes bounce off the rocks and miss out on some things.  Other times we bank safely on the sand and achieve greatness and everybody, everybody hits the rapids and capsize once in a while, getting something that they have to deal with for a longhard time.   In life, there is no answer to the question Why me?  No answer to Why us? …Why my child? … Why my sister(s)/ brother(s)? … Why my husband? … Why my parents? … Why my friend?  When you get the hand you are dealt you have to get out of bed, rub your eyes, take a breath, get to your feet and start the day and the next and everyday from there on end because even if you didn’t sign up for it, the life you have is the one you got, every damn day and you just have to make the best of it and make it work.  Every single one of us who went to our school, (and I am sure women attending other schools in T&T will feel the same about their camaraderie) …all of us posses the mettle to stand up and deal with our lives and move forward. While a situation might really rock us, none of my SJC sisters ever crumble. No matter what our faith or beliefs are we are strong and when we are not not, we acknowledge the moments when we are weak, we accept them and we find strength in others and in our God, knowing “this too shall pass,”.

I am perplexed by life all the time and particularly today.  As a mother of a child with special needs, I wonder what it must feel like for my friend now that her boy is gone.  Today she must be very busy as there is a lot to do when a person passes away. It will be punctuated by tears and sadness, but what is she going to do a few days from now after he is laid to rest.  There is a routine with special kids. Mind you, her journey with her son was so much more involved than I could ever imagine.  I cannot fathom the things she had to do to care for her boy while raising her other children.  I can only imagine she needed more than 24 hours in her day and that there was never enough help and not enough dates when her and her husband could just go out and have a coffee and were there ever enough moments when she could just sit and be still for a decent amount of time?  The routine she once had is gone and a whole lot of stuff that she had to deal with will gradually not need her attention, and while it will provide some relief to her, and her husband and allow more time for them and their children, it will be a huge void after years of doing all that they did for him.  I wonder what will she do now? How does one go from doing so much to not doing it anymore?  But, she is one of us and she will know what to do.  There is one consolation I will mention here but I must warn you, reader, I am not being insensitive.  I am speaking as a mother who has a child that will always need me albeit not physically or emotionally all the time, but he will need me to make decisions for him, major decisions for his whole life, beyond my grave.  I feel that if there is any consolation in the loss of her son, my friend can always know that he passed surrounded by parents who were there the day he came into this world. He was ushered into the world by love; he left it in love.  My son is a physical phenomenon.  It is part of his autism, actually.  He will out live us and it will not surprise me if he outlives his younger brother and younger cousins.  I will not be there to usher him out of the world and if there is no family to do so, I can only hope we set up our Will effectively enough that at least a compassionate stranger will be there for him at that time.  We live in a world that has shown me time an again that good struggles to trump evil.  Kindness is not as abundant as it used to be and there is little time for anything, especially for those of us who need just a bit more time.  When my thoughts go to that day,  I occasionally wish that my husband or I could be with him, because no one will ever know him or love him the way we do.  No one will know the right things to say to him, or how he likes his arms squeezed or remind him how to breathe deeply so he can deal with pain.  No one will know the right song to lean in and sing quietly into his ear, that will ease his anxiety.  If life goes the way it should, I will not know who will be there. I can only hope it’s a relative … someone who loves him or at least cares a little.

The world of special needs is so involved and heart wrenching, so crazy and frustrating and draining yet so rewarding and filled with love. Reading my friend’s post today is the stuff that shakes my faith. On days like today, I do not understand why people say God does not give you what you can’t handle. On days like today, I don’t understand what I am supposed to do on this journey or why special children comes to some people and not others, or why after years of difficulty, pain and hard work fueled by love and determination, my friend’s son could not get better?  Why could their family not have a fairy tale ending?  I read of miraculous outcomes all the time.  Why couldn’t he be cured miraculously?  Well, “that’s life”, right?  I will never know why and I will leave it at that.

My heart aches for my friend, her loss and all the days ahead that will be so strange and difficult.  I know she will feel release and I hope she will feel a sense of calm come over her in time.  We connected occasionally (as much as time allowed) and I know she worked so hard at raising her kids, caring for them and she put her all into her job… she is a force of nature and when I learned a bit about her life, all I have is an abundance of admiration and respect for her.  She does it all and she does it with such grace.  Her beautiful boy is at peace now. No more discomfort.  No pain.  I wish her peace over time to heal her sadness.  I wish her joy in his memory, in his spirit and the spirit of her other two young ones and I wish her and her husband endless love to strengthen their bond for years to come.

Like every child, her son was s a gift and a source of love and a a beautiful opportunity. He went from his home on Earth, straight to Heaven, making no stops in between. He went to rest in peace and joy knowing he was loved throughout his journey and if heaven is what we think it is, he will watch over his family for the rest of their days.

Leisel, it is such a simple statement that does not do justice to the way anyone feels right now, but we are all so sorry for the loss of your son and we are all just a click away.  Blessings to you and your family my darling.  ~Danie

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