Month: December 2017

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There Is No Such Thing as a Bad Year

My trees have been stripped of their ornaments, my wreaths and decorations have been placed in their storage boxes and put away for another year. Today is December 28th and for us, Christmas is over and I dislike chores from one year lingering into a new one. Besides, our tree is always up on American Thanksgiving and it’s twinkling lights and the glow of holly berry scented candles, give our home a warm and inviting feeling of comfort and peace that only the Christmas season can deliver. As the boys have grown, Christmas has become a lot less prominent and when Santa was done delivering presents to our home, it’s been harder for me to get wrapped up in the Christmas spirit. But in spite of some Christmases being “autism difficult” and some tainted by the loss of a loved one, Christmas still has a special place in my heart. I have learned that less is more and giving is better than receiving and that not giving anything but a kind, meaningful wish of “Merry Christmas” to someone is even better.  Stepping away from the commercialism of Christmas gets easier as one’s children get older as no one really has a list anymore. No one needs anything. Spending time together seems to be the one thing we all really want as time is something we rarely have and once we’ve done that with extended family and friends, just being at home, eating, watching movies, playing games or just sleeping in a quiet home caps off the perfect Christmas.

Whenever I put the lid on the last box of decorations, I get a little afraid. It’s the same fear I feel on New Year’s Eve – fear of the unknown. I don’t know if my hands will touch these boxes of decorations again and if they do, I don’t know who will or won’t be with us a year later.  I’ve experienced that before in life and I know we will all experience it again but, like every year, I have hope for another good chapter of my life.  When one is young, goals, plans and events are the stuff of life that makes it worth living. When one grows up, those things still do hold some meaning but at the same time, holds less value. A good year for me now is making it all the way to the end of it with everyone that I know and love, still healthy and present in my life.  It’s funny and stupid but once mid January rolls around, I breathe a little easier.  I mean, there is no guarantee things will not change, but by mid January, I suppose I feel like I’ve settled into the swing of things for the new year.

I never appreciate when people are eager to say good riddance to a year. Sure bad things happen and sometimes things don’t go as we expect or would like them to, but if we are upright and breathing and we are able to open our eyes on January 1st, the year couldn’t have been so bad. I hear people gripe about the year and how bad or unlucky it was and as much as can appreciate hard times and bad luck and missed opportunities, I fail to understand why people do not realize that what goes on in a year is very much our own doing.  Our years turn out the way they do sometimes because of the choices we make and sometimes things just don’t line up the way we think they should. But at the end of every scenario, there is an outcome and we adapt and we live with whatever that outcome is. We keep going, meandering about the obstacles in our way, wondering if indeed things happen for a reason and if one door slams shut in our face, would another door with a more attractive prize will indeed open up to us.

I have redefined myself over the years. I am selfless but I know when my selfishness is justified. I have met many new friends and rediscovered dear old ones. I have many acquaintances and have released many whom I once called friend.  Life is about sorting, and re-adjusting and modifying people, places and things. Life is about adapting to the situations in which you find yourself. It is about making many mistakes and becoming so much wiser for having made them. Life is about learning and re-inventing who you are and allowing yourself to move with the beautiful spirit we were all blessed with. Life is about loving yourself so you can love others and it is about always seeking the answers …always seeking the truth. Life is about standing firm in what you believe and never apologizing for who you are but also aware enough to apologize when you are wrong.

I think I am not going to be afraid of the unknown anymore but rather look forward to another chance; a sort of re-birth. Maybe the new year will bring world peace. Maybe the new year will bring a surefire cure for cancer or maybe it will bring an end to hunger and poverty because our species would have finally realized that generosity is far more powerful than greed and love is more impacting than hatred. Maybe kindness will override terror once and for all and we could begin to exist on our planet each species living in harmony alongside each other. A simple yet complicated wish all at once, I’m afraid, but it is my wish nonetheless. I hope the new year unfolds new and exciting chapters in my boys’ lives. That they will continue to dream big and give life their best shot. I hope the new year brings even more maturity and positive change to my autistic son’s life. That there will be an end to some of the things that hold him back and a birth of new skills and ideas that will help shape him into the adult he is to become. 2017 exposed both our boys to loss this year. They have (if only briefly due to their youth) spent time thinking about the fragility of life, it’s unpredictability and the importance of making every day count.  Over the next few years, they will face more loss and the reality of death will make a groove in their minds. I hope when that happens it pushes them to embrace this wonderfully fascinating albeit short journey that is life even more. I want them to never miss an opportunity to try something different that could impact their lives in positive way. How I envy their youth …their time…their fearlessness and their ability to dream. When it comes to my extended family members, there are specific things I wish for each of them but I will keep those safe in my heart.

Well, 2017,thank you for the good things we got, the things we didn’t. Thanks equally for the achievements and for the disappointments. Thanks for the laughs we had and the tears we might have shed and for the lessons we learned. Thank you for what you have allowed me to observe and the decisions you have allowed me to make. What we lived through with you will shape the year that is to come and many years thereafter.

Life is short even if we get to live a long time.Life is sweet even when it seems unkind or harsh. Let us be grateful for what we have, what we shared, whom we’ve loved and whom we have released and let us look within ourselves to create hope and to recreate the things we have destroyed and to learn never to destroy again. Life is tough and life is pain yet it is this thing that we want to hang onto in spite of our struggles – well for most of us anyway – and why not? What else is there that is so raw and difficult on the one hand yet so beautiful and uplifting on the other? What else is there that we can do so badly one day and do so well the next?  There is nothing like life. It is all we know and it is a gift we must treasure and we must learn to live it well. Welcome 2018 – whatever you may bring. Happy New Year everyone! Live your life!

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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,”

“Yes,”

“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.

 

 

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

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

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

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

 

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

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

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

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

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

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

Man-Chi    

 

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

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

                

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