My son was not well at school yesterday.  When his teacher called to tell me he was feverish and sleeping in the quiet room, my heart sank.  It sank for him because yesterday was a day of the long awaited fulfillment of plans.  He was waiting for almost a year to go to a concert in Kingston with his support worker and friend, Lindsey, and the rest of the family was heading to Toronto to see a dress rehearsal at the National Ballet for my birthday. But that’s family life. Things are planned and plans change and we chalk it up to bad timing or bad luck or what have you. The James family day of artistic appreciation was taking a big hit.

My husband, eager not to disappoint (Tom is big on birthdays and hates to disappoint us) asked me to call around and see if (a) we could get Adam to a doctor to maybe have him quickly checked out (Adam is autistic so on the rare occasion when he is ill and it seems significant enough we like to get him checked out as he sometimes does not explain his symptoms properly) and (b) see if someone could stay with him while he rests in bed or (c) see if someone would go in his place and he would stay with Adam.  Willing to pull the plug on all of it (I am not big on making a fuss over my birthday and I am okay with disapointment), I compromised and called around to see what I could do.  The doctor said it sounded just like a cold was coming on or a flu and if he was the same the following morning to bring him in. Everyone else I called was going to this concert so I decided to fold and called his teacher to tell her Tom would pick up Adam from school and bring him home.

Well, wouldn’t you know it, Mr. Adam, now 18, insisted on coming home on his bus.  He absolutely did NOT want his father to pick him up from school. He was willing to take an Advil and come home on the bus AND he was going to the concert. I could hear him vehemently stating his case, so to avoid a lengthy argument, we let him come home on the bus. By the time he got home, he had a big speech all planned that involved telling us in every which way he was going to the concert.  He was not burning up, he had a bath and as per the doctor’s suggestion, I gave him a Tylenol to go along with the Advil he’d had a bit earlier. He was perked up. He dressed as per Logan’s style suggestions in a light t-shirt, with a bluish hoodie, a black boxy jacket and his grey joggers that Logan gave him for Christmas. He ate a sandwich as a snack and showed me he’d eaten all his lunch at school and he was listening to the band he was going to see through his headphones.  He was going and THAT WAS THAT.  When a child who has never really been able to decide much for himself looks you in the eye (a thing rarely done by autistic persons) and puts his foot down regarding his own life, you have to respect it.  I had to respect his judgement.  He is 18 and is finally able to do what we have been waiting on for so long which is for him to express himself in a clear and well thought out fashion.  Against all of my maternal instincts, I agreed with his father, brother and teacher and with Adam and he went to the concert and we went to our show. After all, I remember taking the Comtrex back in the day when being at the party was of utmost importance to me. It was not easy to get to go out when I was younger and living at home with John and Angela. It is the same for Adam. It isn’t easy for him to go do a lot of stuff on his own and I can only imagine how frustrating it is for him to be stuck with Tom and Daniella when he knows people his age have so much more freedom. Mind you,Adam has a lot more freedom than most people with autism his age but there is always room for more because he has had a big taste of it , so who am I to stand in his way when I opened this door to his possible freedom for him? I have to respect his needs and decisions even if they are hard for me to do so. Should he have stayed home last night?  Most likely, yes, but I am not him and he REALLY wanted to do this and he got to do it even though it was miserable. He had full control of his life for a night which is after all, the point of growing up, isn’t it?

When Lindsey checked in with me, everything was good. She sent a photo of them smiling. They had eaten and had arrived at the venue. There was nothing to worry about as he was fever free and was smiling and happy. Around 7:30 we were involved in something going on before the performance when Logan noticed the Snapchat on his phone going off. He chose to ignore it at first but the Snaps kept coming. It was his friend from hockey and school whose mother also happens to work with us. Checking out the messages, he smiled and said that his friend just said he saw Adam heading into the concert.  A bit later on, the same friend Snapped again to tell Logan that he wanted him to know that Adam was throwing up in the tunnel of the arena and that he wanted to let him know in case his helper did not tell Tom or me. Of course, Lindsey had her hands full at the time and did text me a short time after and said that all was okay and though she offered, Adam was insisting he stay as long as he could and that she would pull the plug after a few songs.

Here is where the human kindness comes in. We (mostly I) worry what will happen to adult Adam when we are not around to look out for him. Not yet capable of being 100% independent, Adam is probably at around an 80% capability of independence right now and will to my best guess top out at about an 85%.  He may surge to 95% and prove me wrong, which will be fantastic but from what I know now, he will be able to live semi-independently, in that he may need support when it comes to getting to places on time, being mindful of his schedule and with his purchasing ability to a degree. I do not have this worry over Logan. But what this story proves to me, is that I have less to worry about than I thought because some of the people in this little town which I moved to kicking and screaming (I am more comfortable in cities), may not be perfect for me but is is for Adam. I have had neighbours and friends call me to tell me that they had just seen Adam walking over at place X and they wondered if that was okay and if I knew he was out of the house. At the time, Adam was on his way to work or practice and they had not known that he was at that point of independence and it was very reassuring that people (adults) do know him and want to make sure he is safe. What was the icing on the cake for me last night was that it was a soon to be 17 year old youngster who saw Logan’s brother and not only was happy to tell him that he had seen Adam, but was concerned enough to contact Logan again when he saw that Adam was not well. In an age of Millennials who barely speak words, (which is ironic because one of the biggest goals with Adam was to get him to communicate with words)  Tristin, at 17, showed the human kindness and concern I hoped Adam’s peers would show towards him and us. So many people turn a blind eye. So many people keep to themselves. So many people do not make time to connect with good friends, old friends or make new friends, it is nice to see that a teenager – someone who is a part of the most criticized group on the planet – was able to show such basic human kindness and therefore maturity which has been lost on many Millenials. Tristin used the same device teens are criticized for using excessively, to Snap his friend and let him know about his brother because he knew it was the right thing to do. The human kind thing to do.

Lindsey was as usual her wonderful human kind self.  Some of the support persons we had when Adam was younger would have bailed and brought him home and insisted we come home or would not have agreed to take him and give it a try. I already was loaded with guilt and “if only’s” and she did her best to put me at ease. She is also very keen on treating Adam age appropriately and respecting him as a young adult who can make wise decisions and choices. Adam tried to stay for a few songs but he ended up sleeping with his head rested on her shoulder before she woke him and skipped out of the venue and brought him to her home where she put him to bed. She told me how sorry he was that he got sick in the tunnel and that everyone was looking at them (which is an extremely rare thing for an autistic person. Since when does Adam care what people do or think?) Lindsey told him he did nothing wrong and it just happened and he was not to worry about it or worry about the people who were watching because it was none of their business, to which Adam replied “Yeah, $%^% them!” in between hurls. (Well he is 18, he has ears, has internet access, loves you tube and goes to high school – hence the answer, lol)

How fortunate and blessed we are to have put together such an amazing team for Adam in what are the most important years of his life as he launches into adulthood. We had been exposed at times to fantastic people who personally supported Adam as a child and many who were fabulous in the rough teen years, and now on this springboard upon which we stand as we prepare to let the world have our boys and let them fly into this unknown (to them) phase of life called adulthood, I couldn’t ask for a better team.  We have a great young male role model in Sebastian. In Courtney, we have a perfect just -a-year-older peer who teaches Adam how to be and in Lindsey we have a friend who is practically family. She has been with Adam and Logan from the time they were 9 and 7 when she was their teacher, then their tutor and now just a great support worker for Adam and I trust her so much that she is included in much of the decision making when it comes to Adam’s future.

There is so much to still worry over. The world will never be ideal no matter how easy it is for us to make it ideal for everyone by just acting out of love and human kindness. It is reality and we must accept it because we aren’t doing enough to change it. My worry however, is far less than it used to be because in this little town in which I have not found my groove, there is a groove for our Adam. As much as I love the city and Adam enjoys being in the city, a groove would have been much harder to carve out for him there. In fact, it would have been close to impossible and it would have been frightening to think of all that he would be vulnerable to in such a large, busy environment. I know my younger child will fly far from the nest. He has a lot of me in him and he will not settle in one place for a very long time and I understand why. But I am satisfied that my older child will thrive in an environment that is home to kind humans of all ages who are decent and good. The stories about Autism are not always uplifting. Autism is difficult. Autism is puzzling. Autism is isolating to the person and their family. Autism can feel like a life sentence that no one signed up for. Today, my story is one of hope for not just people with autism, but for all people. In spite of my weariness. In spite of my worries. In spite of my frustration. In spite of all the road blocks in this journey with Adam. In spite of my life, I have hope in humankind and this 51st birthday will be one to remember as the birthday when I felt in my heart the kids are going to be just fine.




The Little Doll and the Giant Grasshopper.

Once upon a time, in a small town, that fancied calling itself a city, there was a beautiful friendship.  It didn’t start off smoothly.  In fact, it was the most unlikely of friendships because he was a giant grasshopper and she a tiny doll, controlling her portion of the world in a magical throne. Sitting on her special throne, she breathed in the cleanest of air through a minuscule tube, discreetly placed beneath her tiny nose. At 6’2″ and 150 lbs., the giant grasshopper bounded about, usually with a big smile on his face, happy to be alive in his own world; tolerating (yet not completely conforming to )the world presented to him. Energy abound, always moving quickly, his long limbs propelling him, one of his unique powers was speed . His job was to race on the track in the summer and on the ice in the winter with the best of all of the other specials (and sometimes regulars) like him and he did well, bringing back to the hub, ribbons of red and blue and medals of bronze, silver and gold. The giant grasshopper also had natural rhythm and could pound out head nodding and foot tapping beats that kept the other specials in the hub moving while they worked….when the drumming didn’t bother them that is…and if it did, he would switch  to humming and singing popular tunes they all knew and loved.

In spite of his wonderfully unique powers, the giant grasshopper struggled to make friends in the regular world because he couldn’t come up with interesting conversations. He knew in his head what he wanted to say, but it didn’t always come out of his mouth just right and he chose to say very little. Still, people tried to get to know him, tried to speak to him but it was the specials and their subjects in the hub who loved him enough to accept him as he was – a giant grasshopper of few words but with with actions that spoke louder than anything anyone could ever say.

The first day the giant grasshopper was accepted into the hub, he frightened the little doll to tears with his long limbs, big movements and loud quirky noises. For weeks she cried and complained that he made her afraid and for weeks he didn’t understand what he was doing wrong but the loyal subjects who worked for the specials did not give up because they knew the tiny doll and the giant grasshopper were good for each other and they were determined to help them become friends. By the end of their first semester together, the loyal subjects had the most unlikely of friends sitting beside each other, eating lunch. They rode the same chariot to the hub every morning.  On breaks, the grasshopper was even seen standing still ( something that was very difficult for him to do) looking over the doll’s shoulder while she controlled the world through the game she was playing on her tablet.

In time, the tiny doll got quite used to the energetic, musical grasshopper. She became so comfortable having him around, she even ventured out of the hub to help the regulars at the local food bank. Though she hated having to take her magical chair on the lowly city bus, she would go in good spirits if her friend the giant grasshopper was by her side. If he could not go, neither would she and if anyone tried to force her to go, they would be subject to her well-honed power of feist. Time passed and the unique bond between the giant grasshopper and the tiny doll grew stronger. When she would not eat, the grasshopper would sit beside her and simply say “Eat your food,” and she would. When she wanted to keep talking, even though he didn’t seem to be listening, he was as he was just happy to be sitting among the doll and the other specials. When his brother, the locust, taught him how to text, the grasshopper invited the tiny doll to join him and his other special friends for dinner at a local restaurant or to join them for an hour of bowling. Time and again, the little doll refused but one day, she said she would come to dinner if he promised never to ask her to go bowling again. She came to dinner twice and and giggled and smiled through the entire meal, the grasshopper fascinated by her her pretty painted little fingers and toes.  Whenever the doll was broken,(i.e. crying) like a true man, the grasshopper made it his job to fix her.

“She’s upset. Why is she crying?” he once asked.

“She does not want to go to the dance in the gym,” the subject replied.

“Okay. Look…just… Dance with me,”

Tears ceased and the problem was solved and another year in the hub came to an end and the specials and their unique powers went on break. The little doll was old enough to move away from the hub and live full time in the world of regulars. She played unique powers baseball and she attended unique powers dance class and though she did not see the grasshopper everyday she texted with him and came out to dinner whenever she could. The giant grasshopper had gotten used to the little doll’s absence from the hub and not seeing her on the chariot that transported them to the hub every day but the texts helped to keep them connected and he was thrilled that he was going to get to see her at his upcoming 18th birthday. She was the first name on his guest list and though he did not have any great words to say to her, he was looking forward to spend time with her and the other specials and their unique powers as they shared ideas on how to teach the lowly regulars how to properly run the world.

The day the giant grasshopper and his brother the locust were planning to text the specials about his birthday dinner, their mother found out that the little doll had died the day before. Her most unique power was her most dangerous power and though she was successful keeping it at bay, it snuck up on her and with no time to put up her defenses, it overpowered her and took her to Heaven.

When the giant grasshopper’s mother told him what had happened to the tiny doll, she was not sure how he was feeling about losing his friend.

“Do you remember Grandad Grasshopper?” his mother asked. The grasshopper nodded. “Tell me what happened,” she said.

“He got sick.” he replied, looking out the window.

“And?” his mother urged.

“He died,” he said, looking her in the eyes.

“Yes, he did. You know your friend the little doll?”

“Uh huh,”

“Well, son, she got sick and she died,”

“Oh.  She died?”

“Yes. Like Grandad Grasshopper, she got sick, she went to the hospital but they could not fix her and she died but just like Grandad, she is sleeping now.  She’s sleeping forever and is in no pain. She’s not sick anymore and she is in Heaven,”

“With Jesus?”

“Yes”  The grasshopper listened to his mother’s words, nodded and said,

“Okay, thank you. I’m going to my room now. I’m good,”

From time to time over the next day, the grasshopper would ask “The doll is gone?” or “She died? The doll is dead?”  and his family and his loyal subjects would confirm that she was indeed gone. His mother told him that there was an opportunity for him to see the doll one last time and say goodbye and the grasshopper decided that was a good idea. When his day was done at the hub, he changed out of his uniform into  a nice shirt, tie and jacket and went to where the doll was resting. He saw her picture, he signed the guest book and waited in line to see his friend. Being taller than everyone in the room, the grasshopper saw her lying peacefully in her casket.

“There she is,” he said. “She’s sleeping. She should wake up,”

“She can’t, son, remember?  What happened to her?” his mother asked him.

“She’s dead,”


“Dead, dead…forever,”

“Yes, she is asleep forever but she is…”

“She is in Heaven like Grandad Grasshopper, with Jesus.  Are you okay?” his mother asked searching his face to see what he was feeling. The grasshopper said nothing but gave the thumbs up. As they approached the doll’s parents, hugs and words of kindness and sympathy were exchanged and the grasshopper shook hands with her family members and nodded when they thanked him for coming. He stopped and stared at her, his his face unreadable and he moved along the line of people to the very end where he took a seat on a nearby sofa. Hugging a cushion close to his chest, he buried his head into it then lifted it, revealing a brief smile.

“What do you want to do now? asked his mom. “Do you want me to take you home?”

“I want to see her again,” and he rose, looking even taller than he was, walked to where the little doll lay and knelt beside her. His loyal subject told him that he could touch her if he wanted  and he did, gently placing his large hand on her tiny one. He paused for what seemed like an eternity then he sighed and said, “Well…see ya…I love you…I’ll miss you,” He got to his feet, turned and left the room but not before taking the memorial picture card of her and gently kissing it before putting it in his pocket.  Noticing his mother’s face, he asked,”You okay? You look sad,”

“I am,” she replied “Thank you for asking. I am sad but I will be okay. How about you?”

“I’m good,” Let’s go home,”

For a few hours after the visitation, the giant grasshopper would randomly tell his mother, father, brother and loyal subjects that the doll had died. He would get reassurance from them that she was never waking up and that she was gone forever but she was okay because she was in a better place everyone called Heaven.  The photo of them at the food bank and the card he took from the visitation are in a visible place in his room and I suspect, in spite of the challenges of his  unique powers, he does feel deeply and he will always remember his friend, the little doll.



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.



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.


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.

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.

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

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.

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


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, 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


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.


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.



"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


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.