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.




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.

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.

Planning Everyone’s Freedom in Spite of the Hand You Were Dealt.

I remember talking to a fellow “autism mom” a while ago.  We were discussing our ideas or more likely our hope that our children would live independently (with assistance) away from us.  Many parents like us often resign ourselves to the notion that our children will have to live with us forever but when Adam was diagnosed, I made it my mission for him to become as independent as possible because, according to this mom I was speaking with, we didn’t sign up for this. We had babies who seemed okay, who by the time they were 2 had shown enough signs to warrant the diagnosis of autism.

Call me mean, call me cold, call me whatever you want but don’t forget to call me honest. My words are based on my family’s experience with my child because each child with autism, like every child on the planet is different.  My kid is not noise sensitive, does not adhere to rigid patterns or schedules, he can be touched, does not rock back and forth and he eats a variety of food – not just chicken nuggets or couches like so many autistic persons do. In fact, if you just saw him out and about without really scrutinizing him, he would appear to be another lanky, energetic teenager. Adam does a shit load of things and functions in situations that no one(except for me and his father) ever expected him to. We put in the love, the work and the time as did he and he has found his niches in this life and looking from the outside in and the inside out, he has a great life because we always believed if we challenged him in good ways, if we taught him to cope with the world, if we helped him cope with his environment, he would be able to live as full and as independent a life as possible. We never let the strange habits, odd reactions and sensitivities he occasionally displayed prevent us from teaching Adam how to cope with this world and function in it. We learned to work through things together. Taught him not to be afraid or wary of certain noises or things while taking into consideration the extra time he needed to learn to handle the things that were overwhelming to him. I suppose looking back I could say Tom and I took whatever the autism threw at our son and at us and we molded it into something that was manageable.

Two jobs, two elite level competitive sports, and an aptitude for the arts later, we have a well rounded young man in spite of the challenges of autism.  The problem with what we have done to make him as capable and independent as he is, is reflected in the type of person he has evolved into. I suppose we could have chosen to take all the sensitivities and oddities and choose to let them overwhelm him and we could have made the decision to sound proof his room, put headphones on his head, not attempt amusement parks, not put him in competitive sports and let him exist in his solo world, spinning the wheels of toy cars while lying on his side. Maybe if we did that he might be a happy little lump content in his own world. But I did not want him living in some facility, not in touch with the world and not in touch with us.  So I picked him up off his side, sat him on his bottom and showed him an alternative to playing with toy cars and changed his life for what I still believe is for the better.  I reached in, found his little hand and held on to it tightly because I was not losing my child to autism. But maybe wanting him in our lives also bit us in the ass. There is no way to sugar coat this (but I suppose I can be polite) – our son is a jerk. Adam has many normal teenage qualities which I accept. Like most teens, his father and I (mostly I ) are major irritants in his life. He doesn’t like being with us anymore, does not want to do anything with us anymore except if he thinks its fun and he is moody with us 24/7. He hates listening to what we have to say. One minute we were loving and holding this gorgeous, curly haired cherub. We were teaching and helping him and cheering him on as he slowly but surely became capable of so much and now that he treats us like shit, it’s quite the slap in the face. Teenage years are not easy  –  how can they be when you have one foot in childhood and the other in adulthood and you drift in between the two worlds every 15 seconds?  Add a big scoop of autism to that and you have puberty stink, puberty ugly, puberty jerk…whatever you want to call it.

The hard part for us is not so much that he is as teenage as it gets (there are two teens in the house and we get the vibe of the stage of life they are in), it’s Adam’s wretched personality. He seems to have a penchant for deliberately getting under our skin. He has certain things he will do that he knows will be disruptive or annoying to us and try as you might you can never truly ignore him. He won’t let you. There are things you can do, medication you can use that improve focus, reduce anxiety, etc. etc.  but you cannot medicate the asshole-ed-ness out of a person. If our son was not autistic, he would still have the personality he has. He seeks negative attention and pretty much only with us.  I hear his support workers and teachers talk about how even though he has occasional moments that are difficult, he shows great empathy. I hear details of the conversations he is able to have now and how helpful and motivated he is and at first I didn’t believe them but these people don’t know each other so why would 10 different people who don’t know each other, lie? I have also seen video footage of him doing all these great things and showing how nice and well adjusted he is and the minute we come home he often goes right to button pushing. It’s almost like some sick, twisted way of drawing pleasure at our expense.

Our relationship with Adam now is nothing like it used to be and I don’t know if it will ever be warm or close again. I think when he lives semi-independently with like room mates and he will really get a sense of his independence from us he may have a greater appreciation for any time he spends with us. It has been very hard trying to love someone who does not like you or perhaps may not love you. I don’t know how he feels about us and I am not going to assume because he lives with us or that we are his parents that he loves us.That would be naive and even a little arrogant. His condition is based on an inability to understand or display emotion in a usual way. His condition results in a constant social struggle and while we accept these things, it is clear that what he likes to do to bother us is intentional and reserved for us.

We have worked hard to help him become (as did he) the whole person that he is today. Adam is very successful and while he completely rejects us, it is not the rejection that is the difficult part – it’s the pleasure he seeks by trying to make us upset. It is the disrespect and the shitty thing is, in spite of the struggle of recognizing emotions etc., Adam knows when he and others are being disrespectful. His teachers can testify to that. It has put a bitter taste in our mouths when it comes to dealing with him. There are some days when we go through the motions to get to the end of the day with him and we are so counting down the days to when he takes over living in our current home and we move out.

Before you pass judgement note that we are going to have to buy a new place for us to live without having the luxury of selling our current home in order to have a down payment for a new one. We are letting our son continue his life in the home he had since he was 7 because it makes his living situation easier for him. He will be close to transportation, his work and the places where he practices for his sports.  It is in close proximity to grocery stores, the mall, our church, the movies and restaurants and everyone in the neighbourhood knows him.  We have taught him how to walk to and from many of the places he needs to be and we have done all we could to do what ever parent of any child hopes to do which is simply to raise happy, respectful, kind and independent children. We are not perfect parents by any means but we did the best with the hand we were dealt because he was brought into this world out of love and was raised cloaked in love and as hard as it is for us to warm to him lately, he is very much loved and cared for. But puberty was not kind to him and certainly not kind to the family and most days we just want to scrape him off of our skin because as much as every day is a new day and a new opportunity and a new day to hope – this child, at least one time in every day intentionally does something disruptive (and he will tell you it is his intent to be disruptive and disrespectful) and we are tired of that. Yes, he is special, he has in many ways been a blessing and he has taught us a lot about ourselves, himself and our capabilities and strengths as people and as a family but man oh man, has he ever tested our patience and love. I understand he has many things he struggles with or copes with to get through a day. We have made our home and the places we go and the things we do as easy and as tolerable for him as possible. We have observed him, listened to him and respected his needs and we are very proud of him but we just don’t like living with him. We are good people.  We are not to blame for his autism although as a mother somewhere deep inside of me I will carry unjustified guilt about this child’s autism right to my grave.  We didn’t sign up for this and we don’t deserve to parent him right through to our death either. I cannot wait for the day we part ways because he will finally get what he wants – to be free of us and we will finally have part of the life sentence dropped. The life sentence of being the parents of a child with autism whose “thing” is to seek negative attention every day. We plan to go on a long vacation the day we leave our son in our home with room mates and support. He will adjust to his new life the same way he adjusted to travelling with his Special Olympics teams without us and his Co-Op at school and getting about with his support workers without Mummy and Daddy.

I suppose I could say I should have been careful about what I wished for – I got an independent kid who is capable of handling his life but his father and I also ended up with a kid who realizes this about himself and who now sees us as irritants and obstacles whom he dislikes yet in some bizarre way he likes it a lot when he succeeds in making us mad. He says he is sorry but he never is as in the very next breath he sets out to push buttons over and over again.  We do a lot of ignoring, re-directing and walking away in order to squash his attempt at pissing us off. He walks away defeated most times when we are able to see our plan through but in spite of the love his father, brother and I carry for him in our hearts, we look forward to the day we walk away because just maybe that will be the avenue we can use to re-build our relationship with Adam.

Like I said before, I don’t care if anyone passes judgement on me or my family because we know the life we have lived.  We know the sacrifices the three of us have made because we love Adam. We also know we did it on our own mostly with the help of strangers we had to trust. Strangers, we have come to know and love, all the way from Alberta to Ontario. Strangers who also helped Adam achieved all that he has. I cannot speak of other persons with special needs, but living with Adam’s autism, for all the goals and milestones he’s reached, for all the pride it has filled us with, for all the good, I fear there have been more difficult times – times where we have been sad, times where we have struggled, times when we felt utter despair.  We have never been able to just put him in the car and go anywhere with him…to this day, there always has to be a plan and a plan B and C. In the midst of the autism, we managed to raise another little boy as normally as we could – giving him the attention he needed and the guidance and time he deserved while having to ask him to understand that he had to learn to wait… a lot.  Our second son could have rebelled, could have resented us and he could have gone astray but instead, he waited, learned to be quite self-sufficient at too young an age and still found time to help us out with his brother. He has been the best support worker Adam has ever had and he has helped him fit into this world in a way we could not teach him. Logan taught Adam how to be a kid, how to act “cool”  and how to, as he ever so sweetly puts it “blend in” and he has stood up for his brother in ways no younger brother should have known how to do.  He taught Adam how to bike to their favourite restaurants and taught him how to use his bike lock and how to work the combination. He taught him how to use money and how to use a cell phone just as well as any teenager. He took over escorting him to the bathroom and showing him how to go in, do what he had to do in the washroom and getting out. When he is with me and Adam he is the one who takes on what Tom would ordinarily do in the public washroom with Adam. Logan is the one who reminds him to keep his stims at bay and not draw attention to himself which can make him vulnerable.  He took over doing that at age 9 because he knew Adam was too tall to come into the ladies room with me at 11. I remember the day he told me,”I can do this Momma. I’ll do it because you don’t have boy parts”.  Logan didn’t sign up for this either but he has such love, acceptance, patience and respect for his older brother and wants to help Tom and me with him any time that he can. That kid put up wit all that Adam threw at him and still, he continues to persevere through the best and worst of what is thrown his way. Logan needs space from Adam as well. He has to go off and find and be his own Logan because, you see, he was given a life sentence too and he deserves to not have to worry about or look out for Adam the way that he does on his own volition.

This past September marked 15 years since Adam’s diagnosis of autism.  He will be 18 in January.  The worst years were between ages 3 and 4 years and between age 14 and now. There were 9 years where things were decent, maybe I could say more in control, happier, manageable perhaps is another word I could use … but it was never easy or simple and I know life is not simple or easy but I feel with autism, if you don’t look for your breaks, take your breaks and work towards breaking away from your child …this frigging puzzling condition will break your entire family.  I’ll be damned if I let that happen. I love my son but I love my other son and my husband too and I love myself and I will not let myself be sorry for Adam because he has autism. I am not going to try and blame his personality on his autism either because we all have a personality and at the end of the day we are who we are. The love in this family is what has kept us whole and it is with the strength of this love I will let Adam and the rest of us be free knowing we have done a fantastic job in getting him to adulthood by recognizing what needed to be done for his well being in the long run.  We could have given up and thrown our hands in the air when things were hard. We could have felt  sorry for ourselves. We could have wallowed in helplessness – but we didn’t. When people said he couldn’t we helped Adam become a person who could and while he is a whole lot better in the way he behaves at home, the things he says and does to intentionally irk the 3 of us … the way he treats us is unfair and that is why more than ever the plan is in motion to set him free and give him the space he wants and the space we need.

I hope for other parents with kids with autism, my honesty will set you free as well. Some people can smile and find everything their autistic child does is beautiful and wonderful and they when they talk they have such empathy for their child when the “raw autism” days take place. They live in an autism central atmosphere and the autism defines them.  My family is different.  We will not pretend that we are okay with what Adam does sometimes, especially since we have learned to separate asshole behavior from autistic behavior. We will not pretend that living the way we have had to was easy or cool. We will not sob on your shoulder but know our shoulders are broad and we have managed our lives without disrupting anyone else’s. I hope my honesty will let parents know that it is okay to feel anger, sadness, resentment etc because they are very normal and real feelings and reactions and if you feel them and not smother them, if you talk about them, you can move on with a clear head and heart the next day. No one signs up for this. No one deserves the life you have when you have to deal with the issues of these children/ teens/ adults. I think if you feel pissed off, get it off your chest with a therapist or a friend or in a group and to hell with the people who may judge you.  I’d like to see them live 20 minutes of the lives we have.  It’s okay to feel however you feel but do have an outlet so that you can keep it together when your child has a day that can push you over the edge. It’s okay to leave your child with a sitter and go out for 3 hours, 10 hours or for a day or 2 and not call every hour to check in. If something goes wrong, someone will let you know but most importantly, it is imperative to have an adult living plan for your child because he is not going to be a child forever and like any other child he may damn well want his independence from you.  If that is crystal clear to you as it has been to us…let him or her go.

I have done a lot to enhance my son – I remember running alongside his bike bent at my waist while pushing his feet onto the pedals for weeks until he figured out what his body was supposed to do on a bike. The day he did he happily and proudly rode off on his own.

I remember pre-ordering our food for months at a restaurant when he was little and sensitive to everything outside of our house. After 7 months he was able to go to a restaurant and wait to be served and could tolerate the ambiance. My husband taught him to skate in hockey skates instead of the double bladed skates everyone thought would be easier for him.  Today, Adam is a highly decorated speed skater, skating on long sharp blades at high speed. His father figured running would be an outlet for him to use up all that excessive energy he constantly has.  Adam has trouble keeping still so Tom taught him to run in marathons so well that he left his bather behind in his dust and today he is a decorated track athlete. We have done our best to make him successful  – not because he wins events but because all these things have made him happy.  Adam skates and runs and drums and sings with a big smile on his face. He is done with us now. We get that.  Have no fear son, you will be living your dream very soon and we will, God willing be living ours because none of us, especially you, ever signed up for this.

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.

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

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

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

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

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

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

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

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

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

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

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

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