autism

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Resilient… He still is but can I be just one more time?…I’m not so sure anymore.

My son, Adam lives with autism. He is 22 years old. He copes with the byproducts of autism daily but he manages to have a good life nonetheless. He is a busy person who loves to move, create, experience and explore. He is an artist, a decorated summer and winter Special Olympian and he enjoys cycling and kayaking as of late. For everything Adam has accomplished whether it was learning to speak, read, tie his shoes, swim or live on his own, there has been struggle. His is a life with double and sometimes triple the obstacles faced by others who live without physical or mental afflictions but for every time autism rears its most browbeating attributes, with his family and amazing support staff at his side, he rises up and shines. 

As his mother, in my heart, I always want the most recent challenge to be the last. We have already gotten up and dusted ourselves off so many times in the twenty years he’s been living with the effects of autism that I just want it to be smooth sailing from the end of each hurdle for the rest of his life. I always want the conquered hurdle of the moment to be the last, but life does not work like that no matter how much I want it to. For my family, there have never been any miracles or quick fixes for the heavy duty stuff that autism is able to lay upon us —  upon Adam. For all the joy, triumph and miracles we never thought we’d see surrounding Adam, I am weary from pressing myself up off the ground after having been run over by the Mack Truck that autism drives from time to time. I can’t dust off the tire marks anymore; the repeated rolling over me has left deep grooves that have reached my soul —  and then I look to my son, who gets up faster than I do every time and just continues on with his day and I realize that I need to do the same. But I am getting older. For me resilience is becoming harder. It (autism) is still here. It isn’t going anywhere and while Adam is older and manages it better and better, it won’t stop being a life long challenge for any of us, especially him. Living daily with Adam’s autism might have become easier in general, but its the occasional out-of-the-blue sucker punches that’re going to get us as long as we live.

The Covid-19 pandemic was the perfect setting for a good old autism sucker punch. Hell, we even readied ourselves and still it took us down and delivered a flurry of rapid-fire fisticuffs that took our breaths away for months. The pandemic was hard on everyone and it was a right *$&! for people living with special needs. Everything in Adam’s life changed and he just was not able to understand why he couldn’t do the things he loved to do. He was in his last year of school and the sudden staggered school schedule confused him and shattered the routine he’d proudly created for himself. He was fine with washing his hands more often and actually loved wearing a mask but he wasn’t sick and just couldn’t understand why he couldn’t go to the social dances, speed skate or participate in track and field. He didn’t understand why he couldn’t volunteer, go to the movies or to his favorite restaurants. We couldn’t let him go for walks on his own anymore as we wanted to make sure he stayed protected from the virus. What if he took his mask off and went up and spoke to someone? What if he tried to enter somewhere and didn’t understand the Covid protocol? It was easier for us to accompany him during this time than let him be on his own because no one understood very much about this pandemic and we had to keep him safe. No matter how we tried to explain the pandemic to him, Adam felt like he was being punished. He felt punished and he resented us for “punishing” him. He became bored, frustrated and angry. All the skills he learned that enabled him to live on his own fell by the wayside as he plummeted into behaviors brought about by the loneliness and boredom caused by the pandemic restrictions. At 21, autism aside, Adam wanted what every young adult wants — independence, separation from his parents and his family, the opportunity to work and be productive, to make new friends and the ability and freedom to be his own boss. He saw that his younger brother still had these things in some form but because of Covid-19, he’d lost them completely and it wasn’t fair. Autism never plays fair and we chose his health and safety as priority one and postponed his launch into complete independence.

Adam developed severe anxiety and he quickly became someone we did not recognize and though we tried, we struggled to help him feel better. With everything and everywhere locked down, it took us about 3 months to find a psychiatrist and several tries attempts at finding the right medication to help our son. We drove back and forth to the hospital on days when he felt so anxious he asked to see a doctor. He was lonely and needed people but of course, he didn’t want Mommy and Daddy at this stage of his life, who would? I set about trying to increase his support staff as in his latest condition it seemed best for him to have 24 hour supervision and I sought to create a team that was a blend of people with years of experience as well as people close to his age so that he would feel less “baby sat”. Support persons were difficult to find but as usual, I kept trying as I believed there had to be people out there still willing to work with people like my son during the pandemic. I made the social services agencies aware that I needed assistance putting these things in place for my son urgently. Social Services struggles in the best of times to do whatever they can to help their clients and try as they might, they could not be as immediate as Adam needed them to be because nothing was happening immediately during Covid. Still, everyone at the agencies inched along working as hard as they could to help us, help Adam, and I am extremely grateful for their efforts. Unfortunately, things hit rock bottom before they stabilized and got better. Not only did my son singlehandedly destroy his community support apartment, he starting hitting himself in the face to try and stop whatever it was that was that was making him irritable. He also became aggressive towards us because we are his family. He looks to us for answers, comfort and to make things better and with my son’s autism, sometimes rationalizing and waiting are not strong suits. As spring 2021 approached, Adam settled. He was calm. He was living in a bigger, brighter place. He was happy and he was in control of his life once more. He became (as he likes to call himself) “the boss” again as plans to help him heal slowly fell into place. I hired him the most amazing, compassionate support staff, got him a fabulous psychiatrist and through the social service agency, was introduced to an absolute miracle worker in the form of the wisest and most intuitive psychologist in our area. The sun shone on our son and our family once again. As more people were vaccinated, things began opening up and we all slowly got our lives back. Adam started smiling again and he re-discovered the joy that was suddenly cut out of his life. At our 2nd annual staff meeting in May, the team was so happy and proud of Adam’s rebound. We had much to celebrate and if I could pick a theme song for our family to describe this time of renewal it would be Ella Fitzgerald’s Blue Skies. You know the one, right? ~

Blue skies
Smiling at me
Nothing but blue skies
Do I see

Blue days
All of them gone
Nothing but blue skies
From now on

 Shortly after our merriment in May, Etta James’ Stormy Weather had taken over the number one spot on our music chart as it had throughout the years, knocking MS. Fitzgerald’s Blue Skies completely out of contention. Because Adam had taken to hitting himself hard in the face over during the first year of the pandemic, I sent him to have his eyes and ears checked as often as I could, even paying out of pocket as by the second visit, it was outside what our provincial health care would cover annually. On each occasion, Adam had perfect hearing and 20/20 vision in each eye. His father, his support team and I did all we could to make sure he was okay as we went through the process of the therapy and the medication working together to gradually help Adam with his anxiety. He’d stopped the destructive and self harming behaviors. Even the dosage of his medications were reduced. (I hear you, you’re thinking we should still be singing along with Ella, right? WRONG). Despite all our efforts to make sure his eyes and ears were healthy and unharmed, Adam somehow had damaged his left eye. In early June, one of our support workers found his left pupil looked cloudy and we took him to the hospital where they said it was a massive cataract. In young people massive cataracts are often the cause of blunt trauma. We had made sure his eyes and ears were in good shape so while we knew he did engage in harming himself, we were sure he hadn’t done any damage. The x rays and scans were clear, he could read the eye charts perfectly with each eye and he displayed perfect vision. Did he fall? Did he hit his head? Everyone on our team was stumped. Adam is not only the most surefooted person we know, he hadn’t had any accidents with his return to skating and track and someone was always with him and there wasn’t an incident we knew of that could have caused this eye condition. Now, hold on a hot minute! When Adam started leaving the movies in the middle of a show back in May, was that a sign that he couldn’t see well in that eye? No, Batman was too long and not his kind of movie and I mean, Pattinson, the vampire boy? Not Adam’s type of superhero. Plus with the second movie he’d gone to see, he’s already seen a couple times. Maybe he left because he was bored with it? He’s the kind of guy that would leave if he wasn’t having a good time. Soon after he saw that Top Gun revival with his Dad and sat through the whole thing. Surely if he couldn’t see well, Tom would have noticed, right? The questions swirled around our family and his support team like a tornado. Everyone was stunned and saddened when the doctor had discovered Adam wasn’t seeing out of his eye at all but were hopeful that it was just a cataract because you can fix a cataract!

We were referred to a specialist who wanted to make sure the rest of the eye was in tact and he performed a more revealing ultrasound and saw a small funnel retina detachment that he felt could be repaired along with the cataract. With the cataract being so big and thick and the retina being detached, laser technology was not an option and Adam was referred to a surgeon in Kingston. After the appointment the surgeon booked him for surgery the following week. I asked the first specialist if there was a chance that my son would lose vision in his eye and he told me that that was always a possibility but so was restoring some percentage of vision in the eye. I know that matters of the eye need to be tended to quickly, and I realized that while my son’s condition was serious, given the time between the in-depth ultrasound, the referral to the surgeon and the date of Adam’s surgery, it was still serious but less urgent than it seemed before and I began to prepare myself and my family for the reality that Adam might be down to one functional eye. My husband and other son also reminded me that there was a window of hope but being in this autism rodeo as long as I have, as the main person speaking to the doctors over the years, I knew we had already started down a darker rabbit hole because of the lack of urgency for the next steps. The surgery took longer than anticipated because the surgeon tried his best to repair the extensive damage to the retina but when my husband relayed what he had said post surgery, it confirmed what I knew in my heart — what I most feared. Adam was going to be permanently blind in his left eye.

I will say this, if Adam was not autistic, he would have said something about his eye when he first noticed his vision was changing. While he reads, understands, spells, texts, writes and speaks, verbal communication has been his primary hurdle. He is a man of few words. He is an observer and a planner. The fact that he can communicate as much as he can verbally and by writing and typing is incredible considering he stopped speaking at 14 months and did not utter a sound until he was 2 1/2 with phrases and sentences returning 2 years after that. If Adam was not autistic he would have drawn attention to his left eye which was slowly failing him. Instead, he quietly adapted, much like an animal would I suppose. This quiet sucker punch to me was the worst one autism has delivered since his diagnosis. I actually feel I accepted his diagnosis of autism better than I am accepting that my son is blind in one eye. I think it is the worst blow I have received. I have learned to navigate around and incorporate Adam’s autism into our lives and it has become our normal. I don’t resent it for being a part of Adam because it is what makes Adam unique and the Adam we know and love, but I have spent so much of my life with my husband doing all the extras to protect him from the things that he would not readily be on the look out for, that I cannot understand how he wouldn’t just say, “hey, what’s going on with my eye?” I mean he talks about things that make him uncomfortable all the time. Why didn’t he say anything this time? Autism. Fucking autism, that’s why. And what is worse, I missed it. The doctor said this damage occurred long enough that the retina was too scarred to be repaired. Somewhere between the eye exam at the end of winter this year and June, Adam was losing vision in his left eye. I’d seen him numerous times and the staff was working with him every day and we missed it. If Sam (who works with Adam) hadn’t stared at him that day when she thought she’d seen something cloudy in his eye, we wouldn’t have known anything was wrong. We took him to the doctor immediately but it was too late. We missed it but in my heart, I missed it and I don’t miss much and when it comes to Adam, his brother, Logan, their father and myself regarding our health. This is the first thing I’ve missed and it sickens me because I can’t change it. I can’t fix it. I can’t give him my left eye. If it was a possibility that you could transplant and eye, I would have done it without a thought for myself. The whole time I was going between the ER and the specialist and the surgeon, I was thinking, this will will turn out aright. We might not get 100 percent of the vision back but we will get some and we will get the right glasses. It will be fine. Adam has autism and he’s been through so much and come through so much and he’s so healthy, he’s never sick and he heals quickly and shit, the guy lives with autism, he doesn’t need any more grief. He will be fine. He’s always fine. Then “will” turned into he “should” be fine and that changed to he “might” be fine and as logic switched back on in my brain and reality slipped back into the channels that keep me focused, the sentence I saw in my mind clearly read “he’s lost the use of this eye and we are entering a new phase of Adam’s adult life journey”. My head hit the mat hard and then my body landed in slow motion. Autism pinned my neck down with it’s foot and the referee counted me down for the loss and I haven’t had the energy to get up. Not this time. Not yet.

I know as a parent, we try to do all we can to take care of our children and I know I can’t protect them every second of every day. I let my sons do all sorts of stuff but I’ve always been able to advise them, and show them how to be smart and protect themselves as best as they can but this was a big blow for me. It’s the biggest blow to Adam, of course. He now has to live with monocular vision and really take care of that right eye. Of course, he’s adapted to it since he first started to lose vision on the left. I mean he duped us all because he just went on being himself never giving any physical indication that he could only see on his right. He went kayaking, swimming and hiking as usual. Heck, he even went to an outdoor concert in Toronto before his surgery and after the surgery went to a barbecue at someone’s house. He’s going for walks and going to his favorite restaurants and in a couple weeks he starts working again at the Y and at the food bank and he’ll be able to go rock climbing and kayaking again in about 3 weeks. He’s moved on so now I pretend that I have as well when I’m with him. I’m not going to give him any indication that I am worried or sad about what has happened. I need to continue to encourage him to live his best life just as I always have and show him that I trust that he understands that he has to be super careful with his vision now. We have discussed that he will be seeing more of his eye doctor to help him with this new journey and I have to step back and give him his space. As usual, I am in awe of him and I am very proud of his resilience. He’s living his life. He’s adapting more to this change every day. He’s donned his very cool protective glasses (he has several pairs) and is as handsome as ever while wearing them and he knows to always protect his eyes when outdoors in the sun as well. I will schedule him regular eye exams and make sure he continues to eat healthily and act with caution when he’s doing his activities and be there and be as ready as I can for the next hiccup. 

 But, I’m not good with it. I feel like I’ve been beaten this time. Even though I did everything I could to make sure his eyes and ears were not damaged, it still wasn’t enough. We’re all tired. I am tired. I am so very tired from doing all I can to have just fallen short of being able to protect our boy. I am deeply damaged by this one for sure. I don’t know when this wound will heal and contrary to my personality, I kind of feel like staying down for the count with this one for a while. After all we went through during Covid with Adam’s autism I didn’t think I would have anything to share or write about because we came through it, you know? Nothing but blue skies, right Ella? And I didn’t want to re-hash it or re-live it or garner any sympathy from anybody, you know? I thought, well, this is great because we’re all just going to move on but this bitch ever so silently and stealthily wound up and got me on the jaw and I saw stars and I haven’t recovered. Adam seems to be on the mend but his momma just doesn’t have it right now and I’m not sure when I’ll get that gumption I need and rely on to move past this one and I don’t even want to try right now. I am deathly afraid that one day he will lose vision altogether even though he may have sight until the end of his days. He’s not the only pirate-come-lately in this family (oddly enough, I think they all lost vision in the same eye) but he is the only one with autism. I am his mother and he has autism and now he has one functional eye and I will continue to worry, fuck it! It’s my baseline. I know as time goes on, this left eye blindness will not take up the forefront of my mind. I know that one day I won’t feel the stabbing pain of useless guilt 90 percent of the day and one day I won’t wake at night worrying about his sight. One day I know I will be able to be completely engaged in a conversation without having my thoughts drift to my son’s blind left eye. I know until then I will continue to do what I do best when I am working on coping with heavy stuff — I will pretend that I’m okay, especially around Adam, in the hope that one day, I will make peace with it as he has. Though I am worn down and and blemished by 20 years of autism’s attacks on my spirit, I hope I too can be resilient, but for now, I may have to let Etta James croon about the way I feel a little longer ~

Don’t know why
There’s no sun up in the sky
Stormy weather…

Stormy weather, stormy weather
And I just can get my poor self together
Oh, I’m weary all of the time
The time, so weary all of the time

Leave a comment Posted on Anxiety, autism, Depression, Mental health, special needs, Uncategorized

Unravelled

Crocheting. After 21 years, it is back in my life, every stitch unhooking my mind from things that weigh me down in a day. Hook in right hand, yarn in left I am on automatic, chain linking, waffle stitching, blanket stitching and cross stitching, every fragment of my life back together in the hopes of making something great…something comfortable that makes others smile. Hoping to make something of a story with this life of ours that will result in something beautiful.

Photo: Daniella Barsotti

I have so many things I want to make with this yarn and hook of mine. Things that I hope will bring joy to someone else. I hope these ideas blossom into cherished items that people could look upon from time to time and remember I made it for them out of love and the best of intentions. And while creating to give is the goal, selfishly I yearn for that rhythmic, peaceful mindlessness that accompanies this craft that my younger self snickered at as being very “Carmencita and Mrs Ramirez”, aka an old lady thing. Hmm…from time to time I think youth is really wasted on the young and while I would give anything for the eyesight of my teens and twenties, I doubt that I would have had the patience for crocheting as a young person. While it is easy to learn, there is so much that can go wrong, oftentimes only revealing itself the further you get into the project. When I was young if I invested a great deal of time in something, I would only be satisfied with a positive result. Wasting time was not an option for my younger self and I would have quit rather than restart a project. For me it would have been perfection or bust. When I started crocheting at 32, I was filled with joy because I was pregnant with all the time in the world to crochet for my baby. I was happy to take all the steps necessary and I was open to making mistakes and learning from them because I wanted to make something special for my child. I made blankets, a scarf for my husband and even a little jacket and hat for my baby to wear as a matching set. Love and hope fuelled me from one project to the next and it was blissful. I put down the yarn and hook the summer after my 35th birthday. Life happened and I needed both hands and a focused mind and then the second sweet baby came, and I only happened upon my crochet tools when I was searching for something or cleaning something, always vowing to get back to it. And now I am back, and the timing couldn’t be more perfect.

To me crocheting is the one craft that gives you infinite chances to redeem yourself. Since my epiphany to make a hockey-watching blanket for two, I have made so many mistakes. The first mistake was at 6 feet by 2feet in when I realized I could not talk myself into thinking that I could straighten my twisting blanket. The stitches were too tight and so, after 3 weeks of work, I pulled the working yarn and unravelled it to the very first chain stitch and started again with a plan – make 12 to 14 large squares, each a little different in pattern from the next and join them together to form one big blanket for two. I am re-learning how to do this craft and I am prepared to unravel and re-do and re-work a piece because I know I have undertaken a big project that I want to see through and while this blanket for two is going to be perfectly imperfect that’s okay because it will keep my husband and me warm as we sit together watching the sport we love. It will connect us and make us happy and it will have a purpose in our lives. It just has to be good enough for us to become part of our story.

Crocheting is a timely metaphor for what is happening in my older son’s life during this pandemic. Adam is my big 6ft 2-inch blanket for two. He is a cumbersome project that would cause even the most skilled crochetier to flounder and quit. He is a beloved project that is never-ending with facets of his personality and behavior that is greater than me and everyone involved with him. He takes time, patience, hopefulness, tolerance and acceptance that can only be fuelled by deep and endless love. He requires perseverance, energy, strength, resilience and did I mention time…lots and lots of time along with an abundance of creativity and an ability to have short- and long-term foresight. If I let him, my son Adam can be a life-long project and I find myself wondering if that is best for either of us and if tying off the yarn and ending the project no matter what it looks like is what I need to do.

But I can’t give up. It’s Adam. He has always been my big, complex project. With all the success and all the mistakes I’ve made raising him and all the tears of sadness and joy I have shed over him, I am far too invested now to walk away from him, as this thing that is inside him scorches us with its fiery breath. Helping him battle this demon means advocating for him behind the scenes, I am still, on the daily, intertwined in his intricate life; still designing a platform from which he can successfully launch …. again.  I’ve stitched his world together before and it has unravelled before, but not like this. As my son reacts to the isolating restrictions of a poorly handled pandemic, his mind sinks deeper into what I see as a sort of unique madness. Nothing in his world makes sense to him, yet he can remember all the steps required to physically navigate our topsy turvy world – this world in which I promised to meet him halfway if he would just trust me, take my hand and allow himself to be a part of what it had to offer. The world has unravelled, and he is barely hanging on to its frayed ends. Confused and desperate to control the things that are happening in his life, he stitches his day together with pain, sadness, and anger. But medication, like yarn is forgiving. I am forgiving. I understand his mental illness more than ever. Autism, the most miniscule of Adam’s issues at the moment, is a neurological condition with attached comorbidities like depression, anxiety, OCD, ODD and or personality or mood disorders and distinguishing among them all to try and treat them is like trying to diffuse a bomb with a blindfold on.

 Nothing that has happened, nothing that he has done is Adam’s fault. Not his father’s, not his brother’s and though as the vessel that carried him and nurtured him, I want to blame myself, it is not my fault either. And so, I roll the unravelled tentacles of yarn back into a ball and I twist its frayed ends between damp fingertips so that it can be functional again – so that it can be manoeuvred through the fingers of my left hand and be known as work again, and hooked and linked whole by my right. This blanket for two meant for his father and me is symbolic of my unravelled son and his frayed nerves. Like the blanket, putting him back together will take time. Some days there will be great progress and there will be days where chunks will be unravelled and I will have to step away, re-group and start linking them together again, perhaps with a less fancy stitch. I have learned that the most basic of stitches are the strongest especially when you are working on a big project and once it starts coming together you see that often; they are the most beautiful. Simplicity equals purity and there is nothing more beautiful than the purest version of anything. I have crocheted eight 20 by 20 inch perfectly imperfect squares of red and white, each slightly different from the next. I have eight more to go and it could take me days, weeks or maybe even months, but I know by the end of the year, as much as I will unravel and re-work this big blanket for two, I will be able to count on the integrity of the yarn the way I count on Adam’s integrity and he counts on ours, and that of his support team. And once every fibre is stitched into place and my project becomes the blanket I envision; I will wrap it around his father and me the way we wrap our love around our son.

It will take a long time for my son to crochet his life together –much longer than it took to unravel and longer than it did the last time he came apart. But we have crocheted before and we have more experience this time and we know to expect the unexpected. We have learned that every project is different and not every stitch is the right one and that the most intricate ones take the most time and patience. There are days when I work on this blanket, I go for the most complicated stitch because I know if I am in the right mindset …if I work slowly and carefully, I can create not just a beautiful square but one with a pattern so unique, that it will be outstanding … that square will be the one that ties all the perfectly imperfect ones together. And so, I retire to my comfortable spot with my yarn and hook, so close and yet so far from my son. I designed the plan; I picked the players, and he is in the best possible hands. Over time, the effects of the pandemic will wane, and the world will be able to offer my son what it once did – his life as he knew and loved it along with all his expectations of entering adulthood. Holes will be filled and patched, walls will be rebuilt, and the sun will rise and cast aside dark clouds. He will find the balance between moving towards independence and the kind of relationship he wants with us. Twenty-one is as good a time as any to rebuild one’s life and I will simultaneously stitch this blanket together while I wait and watch in hope. My son wants and needs the space and time to find peace and wade his way through this swampy depression that is trying to drown him. I cannot be with my son physically, but I am with him in spirit and I hug him with my heart and because he dwells in my mind, I feel like I am there with him for every leap and stumble along the path to healing. I’m here…we are all here. We are his family and as long as there is breath in our bodies, we aren’t going anywhere.  And so, I sit and I crochet, stitch by stitch, every fibre… waiting, hoping and loving until he feels whole and ready to be held by us again.

Photo: Daniella Barsotti
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Seven Months to Fifty: Lone Rider.

I need a new mountain bike.  I went for a ride yesterday and I could hear and feel that it is time for a new one.  It’s been a faithful friend over the years though. I have had her since I lived in Brockville, well before kids were even a thought in my head.  But second the boys were old enough to ride without training wheels, that was the bike I used to teach first, Adam, then Logan, how to ride in the street and along the trails.  Yesterday was the first time since they were born that I have ridden alone. They still do these sort of activities with me if they feel like it but they are teenagers now; a far cry from the ages where this sort of thing was part of our day to keep them active, teach them things and to make them nice and tired by the end of the day.

scooter scoot and skatescoot and skate 3

As I rode along the route, I remember stopping at the bridge with them, taking the time to look at the people fishing and looking at the large heron we used to see perched on this massive rock in the middle of the river (Wonder where he’s gone to? Wonder if he is still alive?)   heron or crane

I remember Logan’s endless questions and non-stop chatter and Adam’s intense stare as he quietly took in everything, building a massive vocabulary in his head without uttering a word until of course, we rode under the bridge where he would join Logan and yell “ECHO” and laugh until we were clear of it.  I yelled “ECHO” yesterday too, for old time’s sake irregardless of the stares.  As luck would have it, I rode under the bridge while the train was crossing and I remembered how fast Logan would pedal from under there because he was always scared of the loud noise of the wheels on the track above and was concerned that the bridge would collapse under the weight of the train (“and fall and qwash our heads Mummy!”). Then, because we had Adam with us, if a train was crossing, we had to stop in the pothole laden parking lot of the yacht club to watch each car go by until they were out of sight.  Autistic people are flabbergasted by trains while their younger “regular” brothers like messing around with the gravel and mud in the potholes much to my disgust (there was never anyone dirtier than our”Pig Pen”, Logan James).

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Closer to the marina’s boat launches we would often stop at the Duffer’s counter for an ice cream or a freezie in spite of the dead-fishy smell.

freezie 2 freezie 1

Logan had an eye for locating dead fish and depending on the time of year, he had an eye for large mating fish who’s bodies would emerge out of the water, splashing wildly as their bodies tumbled around like laundry in a clothes dryer.  This caught the attention of every child on the path which led once again to Logan’s most frequent question “How come those fish are fighting?  What are they doing then if they not fighting Momma?” followed by “But why?” At the middle of the trail, there’s another bridge which is a perfect spot for watching the turtles dive off the rocks and into the mossy water and on the other side you could look out onto the bay and see a family of swans as they swam by marveling each time we rode down there at how quickly the babies grew.

IMG_0687   swan

A few steps away is the playground  where I always promised them we would stop so they could play on our way back from the end of the trail where they would practice skipping stones at the rocky beach near the rowing club.  After the thousandth rock was skipped and they exhausted themselves at the playground, they would gripe about having to ride home, but they did anyway.

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Our bike rides to the waterfront would take about two hours when all was said and done, three if I ran and they took their roller blades or scooters instead of their bikes.  Yesterday the ride was part of my exercise program.  I was able to ride in high gear the whole way there and back in an hour.  For the first time in a long time, I only had to look out for myself on a ride.  I didn’t have to shout out directions, or reminders to look both ways before walking our bikes across the street.  I did not have to worry about drivers seeing them or them paying attention to the traffic signals.  (And to think I sometimes took other people’s children with us.  I must have been some kind of sucker for punishment!) For the first time, I did not have to yell at 8 year old Adam to slow down or tween Adam to keep up.  I did not have to sandwich a highly distracted Logan (at every age until he was 11) between his brother and me as we rode along the path.  I did not have to remind anyone to stay to the right and watch for pedestrians (though I did have a chuckle as I recalled a very blunt Adam not using his bike horn but preferring to yell, “Move out of the way, old people”  as he rode past them on the path, hands behind his head like a circus act …and me with the disclaimer “Sorry…he’s autistic”)  Yes, for the first time since I became their mother, it was just me on my bike and it was kind of strange but nice … and it was relaxing and it was freeing, yet quite nostalgic now that I think about it.  I was alone but not lonely because as I rode past each of our “spots”  I could see them with their big colourful bike helmets on,

IMG_0093   their Hot Wheels sunglasses and their Ninja Turtle water bottles,   I could hear them too, “Look at this Mom!”  “Whoo hoo!  I jumped it. and I didn’t die!”

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“Push me harder mom!  Want swing higher, please, Mom!”  “Mom, come quick, Adam fell down!”  “Mom….Logan…it’s crying. It has a bleed!”

blood cleaned  Were all these moments that long ago?

They are young men now and so much has changed and they have changed me in many ways. I remember feeling so tired just keeping them busy, teaching them, raising them and more specifically trying to enhance Adam’s life and give Logan the most “normal” life we could give him.  I remember wondering how long it would be before they could do more for themselves, be more independent and of course, if Adam ever would be independent enough to do anything on his own.  It felt sometimes their childhood and their helplessness would last forever yet once they reached their milestones I never noticed  right away because I was caught up in the next issue or phase I had to get them through. But suddenly here they are now; capable, independent, happy (with the most interesting personalities and senses of humour) and I don’t know where the time went or when they got so big and tall.  It was hard raising these two, and it was joyful, it was tiring but it was and still is worth it. 

The baby who shavedadam recent When Adam was diagnosed Tom and I made the decision to do all we could to help Adam and keep our family whole.  I sacrificed my career to stay home with my children for as long as I could.  Even when I went back to work, it was on a part time basis and even now that Tom has established his own business, I still work very flexible, part-time hours.  It has been and still is my pleasure to have made the decision I did.  I was here for every first, I was here for every tear, every bloody nose, skinned knee, very lump, bump, fight and every triumph.  If Adam was not autistic, I might have very well missed out on all of what are now the most cherished moments of my life.  I was here for them then as I am now because I believe it was and is important and worth the sacrifice.  I still feel that they need me to be available.  Not that I want to micro manage them, but I want to be here to lend my support during these teen years on the days that are absolutely shite and to be there to high five them on the days when something awesome happens.   Conversations in a day or a week occur less frequently now, but when they do, they are long and in depth because there is an openness among all of us.  Logan is comfortable speaking to both Tom and me and he trusts what we have to say even when he feels he has to be objectionable.  Adam is still a man of few words, but over the years he has learned in all his independence that he needs our help from time to time and seeks it whenever he can in the best way that he can.  He does not like long conversations, and the three of us respect that but still do find ways to bring him out of his shell verbally.

Logan is a typical 14 year old guy and is the best teacher Adam has ever had when it comes to him fitting in and has been so crucial in helping us recognize what in Adam’s demeanor can be classed as puberty and what is autism. Looking at these photos, and many that we have taken over the years, makes me realize how much they have done together and how close they are in their unique way…Logan, the mouthy self proclaimed big brother, Adam, the silent, thinker who adores his brother and sees him as a best friend.  I used to worry that the autism would alienate them but they spend a great deal of time together and I think there is nothing they would not do for each other.  And as Adam gets older, he is showing more compassion for others especially Logan, and does not like it and actually feels badly when something has upset his brother.  It is the sweetest thing I have ever seen from Adam, whose condition makes regular and appropriate human emotion almost impossible for him to understand or display.

Adam has given the rest of us in this family a special ability.   He has taught us how to speak in ways that he could understand, do things in a way that he might be included and to think outside of the box pretty much for everything we need to accomplish with him.  He has taught us how to help him be successful while challenging him with the same high expectations we have of ourselves.  Knowing it is important to speak to people, Adam has been practicing the arts of texting and  conversation and he has some rehearsed phrases and sentences that he knows are effective in helping him get what he wants.  Lately, he has taken to coming up with great ideas and usually they are great ideas that benefit him.  Every week when we go for our ice cream treat, he is insisting we go inside the store to practice placing his order and paying for it.

He’d say, “Hey, Mother! I know! How about we go inside the store and get the ice cream there. We don’t have to do the drive through today!”

He is so insistent and so passionate about this that it is a joy to watch him at the counter, his bank card in hand, shouting his order to the cashier who might come away a little bit deaf after being exposed to his loud deep voice  but hey, we’ll work on volume in the fall.

Now that he is a teenager, Adam and I have a musical bond.  He is  my in car DJ, switching between Hits 1, The Pulse, and Pop 2K finding all his favourite tunes. We chat briefly about the song, who sings it and why we like or dislike a song.  On long drives, I get a kick out of looking at him out of the corner of my eye as he air drums or when we both start giggling when we catch ourselves miming and bobbing our heads to the beat of song we enjoy.  When I sing he tells me how terrible I am and when he sings I tell him how wonderful he is to which he promptly replies, “Thanks, I know,”.

I have not been perfect with them by any means.  I have made many mistakes as a mother and I am just as flawed as the next person but I do have and appreciate my special connection with each of my boys. Now, I think a proverbial torch has been passed from me to their father.  They like going to the movies with him, they like going to Canadian Tire (a hardware store and then some) with him, like going fishing with him and Grampa when he is feeling well (Adam mostly likes to drive the boat)

fishing 2 fishing 1   and they like going to the gym with their dad too.  It’s absolutely a man thing because I am politely not included and it’s perfectly fine.  When it comes to getting their uniforms for school, they want to go with him because they are more comfortable fitting on the different sizes with him there as opposed to MOM being there and making it awkward much like how they prefer to go underwear and razor shopping with him too.  It’s nice to see their man bond with their dad but I will admit I do miss their little feet, their little shoes, their

scabby elbows and knees, all things Thomas, Star Wars Clone Wars, WWE,  

wrestling obsession

YTV, Teletoons  and when Spider Man and Superman were like God to them.

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I miss finding them asleep in their tent;   sleeping babes  I miss the stuff in their pockets like a toy car, a rock or some dead bug.  I miss dirty hands and faces and their over-sized heads … sometimes …. many times…. all the time.

Their childhood went by quickly in my opinion but they still have some time for old Mom and they have their memories that’s for sure and it’s really nice when we look back at the photos Adam remembers because we often wondered if he did at all. They are almost men now and as bittersweet as it is to say goodbye to their childhood, I get to watch the best part now.  Where will their path lead them?  Whatever will they become? Time will tell and hopefully their father and I will be here to see it all unfold for years to come.  But for now, maybe I’ll start looking up bikes on line…see what’s out there that this Mom of almost 50 will enjoy riding … alone.

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One Year to Fifty: This Faith of Mine.

There is no secret that at times in my life, I have struggled with my faith.  I make no excuses or apologies for it and at the same time I am not one to be angry at God, nor am I cynical towards those who are unwavering in their faith.  In fact, except for the ones who are clearly in the “blind faith category” who dwell in the “fire and brimstone”department, I really admire people who have a strong connection with God or Yahweh, Jah, Allah, etc., you know, the people where their faith just flows through and out of them.  They are people at peace who have the utmost patience for the trials and tribulations of life.

I share a difficult life with my family. It’s not a bad life and we are generally happy but we are pretty much always “on”, even on vacation and shit is just never easy in any aspect of our lives and I suppose the good out of this all is that we take nothing for granted.  All Tom and I ever wanted were love and happiness and happy, healthy and independent children.  I was happy to just sail under the radar with very little drama but as fate would have it, our life together turned out to be absolutely 100 percent on the radar every day, pretty much all the time and there is not a day when something is not an obstacle.  In spite of a textbook pregnancy, one of our boys has autism and that is the constant difficulty we live through each and every day.  I remember one New Year’s Eve when Adam, our firstborn was about to have his first birthday.  I woke up to find Dick Clark”s Rockin’ New Year’s Eve Countdown watching me and I remember looking over to where Tom was on the computer and listening to the baby monitor that was broadcasting the little sniffs and snorts of my almost 1 year old as he slept.  This is far too perfect, I remember thinking, as I looked about our cozy Montreal apartment.  When will the other shoe drop?  Well, shortly after that, it dropped 30 feet from the sky like a cement block when Adam was diagnosed with autism and pretty much everything from that time on was not simple, but it is the life we have and it has shown me just how remarkable my family is; shown me just what we can do when we put out minds to it and think outside every damn box we have found ourselves in.  We are the most resilient and brave people I know.  This family has had more downs and laterals and back pedals than ups but my oh my, are the ups ever so sweet.  My children (with a special nod to Adam) have accomplished things I could only imagine and admire and everything they have achieved has been done in spite of the walls we have come up against time and again.

Have I been angry and frustrated by my life?  Yes.  Have I wondered “why me?…why us?” Absolutely. I was raised to be a good Catholic girl.  I prayed and I went to church and I trusted that my prayer and faith would be there for me and boost me in my times of strife or even shield me from terrible things. Did I wonder what I did to offend the almighty when I led the same kind of faithful life as my cousins? Of course, I did.  I just didn’t understand why my child was chosen to be the one with autism and that kind of thinking puts you in a tail spin I cannot even begin to describe.

So with regards to my faith, I have gone through times when I felt sorry for myself and decided my family and I were betrayed by God but I never felt punished and I will explain why shortly.  I have gone through times when I have taken a deep breath and re-grouped and made a concerted effort to devoted prayer.  I have had periods when I have gone to mass without fail (pretty much during my boys’ childhood) and I have periods when I just don’t want to set foot in a Church.  However, in spite of my struggles with this faith of mine, I passed on what I had learned as a child through my young adult life as a Roman Catholic to my sons.  You can call me hypocrite, but one can certainly pass on and explain the meaning of doctrine and catechism to children so that they understand what lessons their religion is trying to teach them.  It is much like explaining to them what a passage from a book they are reading means.  During their childhood, they learned the Mass.  Adam loved the music and loved to read out the prayers and learned many of them by heart in spite of his autism and he got many positive things out of having to sit fairly quietly in a church for an hour each week.  Both boys prepared for and made First Communion ( which I think Adam perceives as a snack break – but whatever – he likes going to church most times) and right after his First Communion, Logan decided to be an altar server and did so for about 5 years.  They both chose to make Confirmation as Adam decided he wanted to continue going to mass and enjoying the aspects of it he preferred and Logan wanted to continue his Catholic faith into his adult life.  While Adam prays by rote, Logan is a very spiritual person and while he does not really like going to church all the time, he does pray …A LOT.  They both go to Catholic schools and actively and voluntarily participate in many activities and outings that involve Catholicism.  I just did not see a reason to dash their feelings about their religion because of my own waxing and waning faith.  They (especially Logan) deserved to be taught about being Catholic and about God in a way that will allow them to understand why it is they choose to have this connection in their lives and to be honest, if religion can teach them to be loving, kind, selfless and understanding, it isn’t a horrible thing for them to be involved in it.

While I was inundated with catechism from the age of about 6, (I remember the blue and then the green paperback text/workbook from my grade school days) and I could recite every prayer and knew how to say the Rosary and knew the format of the mass and all the responses and when to genuflect and when to bow and kneel and stand, Adam and Logan were taught about it differently.  Having started off in the public school system, then home schooled, then having a stint in private school, I taught them about God and religion.  I explained what Christmas and Easter were in a way they could understand.  I never told them when they did something wrong that it was a sin because I dwell mostly on the positive side of religion and I took the misunderstood “fear” out of God-faring.  I did not want to brain wash them but rather teach them about what religion should stand for and show them how many people are able to draw strength and courage from their faith and maybe they would be able to as well. I have always been honest with them, even when the question of my own faith arose and even now in adolescence, when Adam prefers not to work at sitting still for an hour, or Logan sours about faith when things don’t always go his way, I still am honest in the way I teach them and encourage them to sort through what it is that has put them off.

Now, here is my explanation about why I never felt punished by God.  In all my struggles and heartache as a mother that came along with raising Adam and going to battle and getting through days when I would rather hide under my bed, I have at times felt betrayed or overlooked by God.  However I am smart enough to know never to say if there was a God, or if God was so good  there would be no pain or illness or suffering.  God is not a magician.  He cannot be blamed for everything bad.  As humans we have done our share of nonsense that jeopardizes our health and well being. God does not make us eat poorly, be reckless or spend more than we can afford.  God does not put the cigarettes in our mouth, pills under our tongue or shoot needles in our veins or put the cigarettes in our mouths.  Sometimes we do stupid things and sometimes things just happen and they are not nice, or fair or good …that’s life.  Everybody’s got something and we just have to deal with it the best we can and everyone has a choice to do something intelligent or something idiotic.  I suppose where my skepticism lies and my wavering faith occurs is the justification of a god.  Is there an entity or force out there (or up there as you know, we’ve been taught that heaven is up and hell is down) that creates a path for us?  Or is it simply fate?  Looking at our lives, I see things happening in blocks or stages and the next two stages that occur have different outcomes and the journey of life is really dictated by the choices we make and how we react to various situations.  For instance, along the lines of my previous piece about proverbial doors opening and closing along the path of our lives, I see Tom’s opportunity to accept a job in Calgary back in 2002 as one which led to us being in the best possible place to have Adam diagnosed and treated in the early years of his autism.  However, had we bought a house in Lasalle, Quebec, I would have still gotten Adam diagnosed and would still have read to him and constantly talked to him and home schooled him….I would have done nothing differently.  I would have still moved mountains to get him the funding he needed and honestly all the challenges we faced with him anywhere we lived would have been the same.  So in my mind I am not sure if God had anything to do with the different opportunities that were presented to us because we decided to either take advantage of them or not.

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I also don’t believe that you can pray to God to have conditions or diseases cured or taken away.  The human mind and body is unique to each person and you are either susceptible to certain things or not.  You can’t put that onus on God to perform miracles just because you prayed for him to do so.  My father smoked most of his life. He got cancer and he died.  It was not God’s fault and there was no reason to pray for a miracle.  He had a deadly disease and he died.  I miss him and I remember him mostly in the good times and sometimes I remember him sick and I remember him lying in a coffin but that hurt and pain was not caused by God.  God didn’t make Adam autistic and neither did I.  For crying out loud, how many babies are born condition and illness free to mothers who smoked and ate poorly during their pregnancy? I was so careful with everything I did and consumed while I was pregnant that there is not way Adam should be inflicted with this puzzling and difficult neurological condition that he will have for the rest of his life.  But… as he has and will continue to do, he will learn with lots of support and encouragement to cope with this world and to handle his sensory needs to live his life to the fullest.

I don’t believe in blaming God; I don’t believe he is a puppeteer and I don’t believe in outlandishly praising him or scandalously cursing him.  The stories of miracles are difficult for me to believe because I was not there to see the Red Sea part or witness Noah hustle each gender of every species of animal onto an arc.  What I do believe is the history of my religion.  I believe there was man who walked the earth and he was a good man.  I believe he had a vision and a plan to share that was based on everyone showing love for one another.  I believe he saw that kindness and compassion were the keys for human co-existence and that greed and slack morals were the things that could tear us apart.  I believe that people knew that he was right and that his idea of us being responsible for ourselves and our actions was one that was complex and difficult.  I believe people choose the wrong things because it is easier to not have accountability and easier to be selfish and greedy than it is to give of ourselves, our money and our time.  I believe the bible and various other books of worship and religious history are filled with brilliant and worthwhile messages we could apply to our lives but we must learn to read between the lines and look for the underlying meaning of the words and not take them literally.

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No religion preaches violence and cruelty.  Misinterpretation of good words have proven to be so dangerous, especially to impressionable minds.  I believe that those in religious authority have a responsibility to explain the word of God properly and to live a life that reflects the goodness they preach.  I am dying to be moved by a proper sermon.  I was tired of being part of a religious community with members who only reach out to the causes that are comfortable to them.  For almost 10 years, my boys and I have attended the same church.  For almost  10 years the congregation has seen Adam and his oddities and must have noticed when (2 years ago when puberty hit) Logan and I went to church alone.  Never once in 2 years did anyone, including our priest and deacon ask where he was or if something was wrong.  They used to chat with us all the time and then when he was obviously absent, they were silent.  My mother said it is not my faith in God that is uncertain, it is my faith in those who dare represent him in the church and do a poor job of it. Perhaps she is right.  There are at least 3 autistic kids in our parish and while there were at one time special masses for families like ours no one else from the parish  ever came, only the families and their guests.  There were more people turned out to have their pets, hockey sticks and motorcycles blessed than there were at the mass for families with autistic children. No one wants to get involved with these strange creatures we call our children.  The ironic thing is that most of the people in Adam’s lifetime (in all the places we have lived) who volunteered their time to work with Adam were not religious people.  Some were spiritual and not linked to any one religion yet all of them had one thing in common – they all wanted to help Adam out of the goodness of their hearts.  Were they sent by God?  Hmm…not sure about that.  I think our paths crossed because I was purposefully looking for a staff of people who were willing to help him reach the next levels of his development.  That was the human kindness that was overflowing onto my family and it didn’t come from my church community.

In my quest to find the answers to my questions about this faith of mine, I get chills thinking of the days when I lived in Montreal in walking distance to the Oratoire de Sainte Joseph.  I remember putting baby Adam in the stroller and walking up the hill that led to the old sacristy and boarding house of Brother Andre who was the parish priest all those years ago.  I remember the smell of the place, the walls etched in history and the “candle room” as Tom used to call it,

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which was so inviting in the cooler months because of the warmth of hundreds of burning candles lit by the faithful from all around the world.  You could feel the strength of their faith and the belief that their intentions would be granted and I too, was part of that crowd.  I lit my candle for the safety ofmy family members and the health and well being of my new baby.  Hmm…ironic as it seems now, I am glad I lit a candle every time I visited the Oratory.  Back then, I suppose with no knowledge of what was to come, my faith stood firm and this beautiful house of God brought me such peace. I attended mass there often and albeit celebrated in French, (some of which I did not understand) I remember being moved to tears by the sheer beauty of the ritual of the mass.  I wish I could feel that again.  Maybe I need to visit my old Montreal neighbourhood. 

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For now, I am enjoying my return to simple silent prayers of thanks that I say randomly throughout my day after what seemed to be an natural hiatus from going to mass or even praying.  The words didn’t come for a while but now they are back and it is well with me.  I think I will make good on the promise to myself to go to the Oratory again …sooner rather than later…It’s never a bad thing to shake it up from time to time and get out of the town where I live.

oratory st joseph

I suppose in this year before I turn 50, as I look inward and reflect on my adult life, where I have been, all that has happened and where I hope to go, it was logical that I would look at my stance with my faith and my relationship with God and religion.  I think in the grand scheme of things humans are very small and there is so much that is greater than us.  The universe is infinite and maybe there is a God out there and there is a heaven and a hell and maybe we are arrogant enough to think that we are the only form of life in the universe….there are no answers to the things we don’t know now and may never know, but what we need to do is find peace in whatever we do and believe and maybe one day there will be peace wherever we go.  In questioning my ideas about God and faith and circumstance, I struggled with my stance on it all but I was never lost or angry or condemning.  I think I was maybe in a transition stage  of some sort where I pitted what I knew  and what I had experienced against what I had been taught,  I think I can describe myself as spiritual and hopeful because I do take responsibility for righting the wrongs in my life by being proactive, doing my best and never giving up …because with the reality of my life…how can I?    I cannot control everything and some things I have to leave up to chance or sometimes God.  And while I have been known to say novenas in my time, I like my quiet connection with my faith and the prayers that leave my lips as whispers to God.  I may have halted the subscription from time to time but I never stopped believing in the content and so with regards to this faith of mine, as I approach 50…I am finding I am at peace with myself .

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Through the eyes of our 12 year old Logan James

In case you cannot make out what he has written here it is (penmanship and all at 12 when one is of the male persuasion in this family lol)  This was his assignment for school.

Puzzle Pieces – by Logan James.

He feels

Disturbed and confused

Trying to fit in,

Trying to get out.

He cannot say what he feels and sometimes everyone gets it wrong

He feels energetic but he cannot always control his body.

He does not want to be weird but he acts strange.

There are good things though …

There is music where he finds his voice.

There is drawing.

The sound of his blades carving the ice.

The sound of his hands slapping the water.

He feels free.

He is not strange.

He is happy.

He is not looking for the puzzle pieces that fit.

He is a completed puzzle.

He is just Adam.Puzzle Pieces By Logan James

(Thank you Logan. We are so blessed to have you in our family and you are a great gift to your big brother,Adam xo Mom)

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Bon Voyage – Unless of Course You Have Special Needs and Are Flying on United Airlines

I know it isn’t everyone’s reality, but dealing with a special needs family member isn’t easy.  Our normal (and don’t try to be politically correct and say “what is normal really?” because there is your life and then there is ours)…our normal is a freak show.  Living with Adam’s autism is a life sentence for me and my husband and to an extent for Logan. We LOVE him and are so very proud of him and all that he has accomplished but it is very easy to resent the autism sometimes…this “thing” that has him in it’s clutches, that makes the simplest thing incredibly difficult.  Since we alone really know how to care for him, no matter how independent he becomes, we are responsible for making sure he’s okay and that others around him are okay as well.  So when I head that United Airlines kicked off a mother, her son and her 16 year old autistic daughter because the girl was disruptive, I have to ask, should they have just rented a car and take the longest road trip ever to spare everyone else from her noises?   The passengers said she was no more disruptive than a crying baby and many came to the defense of the family but while happy to take the woman’s airfare,  the airline was not happy to fly them to their destination.

We are okay if someone is blind or deaf and we are very concerned about people with scent or peanut allergies but God help you if your child looks “normal” and acts weird and makes weird sounds because unlike your children, they can’t always verbally express themselves.  Let me tell you what this woman had to go through to get this child on the plane and to their destination. She most likely had to put a series of photos or pictures together in a social story* a few weeks in advance to prepare her for travel.  If she is noise sensitive she probably had to get all the contraptions to help with that (ipod/ipad, headphones, medication, earplugs, gum if her child is able to chew gum properly. maybe a weighted vest or blanket* or something to help with the anxiety of the teen years, flying, crowds etc., ) and then try and think of a way she and her son could help control her if, or when she reacted to things they couldn’t control like lights, smells, sounds.

Of course you can easily say well then she shouldn’t fly but then what if she was on her way to a medical appointment, or a funeral?  Sometimes we weirdo families have to fly.  Let me assure you that before we fly, or go to a movie, or go to a store to buy toilet paper, if we absolutely have to take our children with us, we spend a lot of time preparing them for how they should behave in public. In a round about way, we ask them to put their autism on hold just so that other people would not be uncomfortable by their presence.  My son is 15 and 6 feet tall and with puberty came this incredible energy where he just wants to sing out loud and sometimes dance and with the long arms and legs he’s inherited from his father, he sometimes looks like he’s having some kind of fit.  So, before we go anywhere, my once very zen kid who has less control of his body now that he is in puberty, has to be told that he has to keep his arms at his side and keep his happiness in check and not be too loud because he’s a big guy and people can be a little scared or intimidated by him because they don’t know he has autism.  I tell my child how to behave in public so as not to disrupt other people because every parent of every autistic child is very aware that the world should not stop just for our kids and that it is our responsibility to make sure they don’t cause you any trouble.  We all do it, and I know this woman did all she could to prepare her child for travel and I also know that like all of us, she felt that sick walking-on-egg-shells feeling because you can do all the preparation in the world and it could all go down the toilet anyway.

Last week, Adam and I did the Big Bike Challenge for charity for the Heart and Stroke Foundation.  It was a lot of fun for him and he and the team we rode with had a blast.  While we were waiting to get on the bike, the driver came to me and said he noticed Adam was jumping and screeching off to the side earlier and he wanted to know if he would be okay on the bike.  I assured him politely that he was going to be fine  without getting into detail that Adam is an incredible athlete and that his legs were going to be the ones to really power the bike.  While I understood why he asked, I was a little irritated.  Would I put my son on a bike with 8 other people if I didn’t think he could handle it?  Would I jeopardize his or our safety? I am NOT about including Adam into social events at any cost.  If Adam had not been in puberty and was the zen 12 year old he used to be, he would not have shown his excitement by jumping and screeching in excitement and anticipation of his ride.  To the driver he looked odd, behaved differently from the rest of us and is big and tall so obviously it was questionable for him to be on what is literally a massive bike on 14 training wheels. It doesn’t matter anymore anyway.  We helped raise money for a good cause and Adam had a great time and is looking forward to doing something like that again but until he is publicly zen again, I’m doubtful that we will.

So far, we have been lucky.  The best part of our vacations is the airport and the plane ride for Adam. He loves aviation. Hell, we’ve even been complimented on how “well behaved” he was on the flight when people figured out he had special needs.  That is a strange compliment to receive – I still don’t know how to take that.  But the last time we traveled with him was 2 years ago before the puberty demon reared it’s ugly head.  Who knows what he will do on a flight now that he is in full out puberty?  But I will do due diligence and call the airline and request the bulkhead seats and give Adam the window and pack the ipad and the ipod and give him his magnesium and his 5HTP supplements to help with any anxiety he may have that I can’t see and I will sit wide awake and mindful of him the entire flight because that is what we parents of autistic kids do.

We have regularly used United Airlines when flying in the US but of course Adam was quiet aka “well behaved” the entire trip but now that he is dealing with puberty and so much is unknown and unpredictable with him now, we will not be flying with them from this point on.   Hopefully we will not be in this family’s situation and we will never be asked to disembark a flight but nothing is impossible.  If nothing else, I want you to know that we parents of autistic kids aren’t selfish or inconsiderate – far from.  We do keep you all in mind as well as our families but it is damn hard to control the unpredictable.  We do the best we can with what we have and we do not rest … we keep trying and changing gears for our children and for you. It would be nice if the airline we pay to get us to our destination were staffed with attendants who could help us out if things were a little difficult. Next time you go on a flight remember all you had to do was set your alarm, wake up, have a coffee, grab your bags and get to the airport …easy pickings from point A to B.  Parents of autistic children have to plan weeks in advance and when you recline your seat and go to sleep,know that we are awake, vigilant over our children because we are trying to make the flight as comfortable for you, as well as our children.  Bon Voyage everyone.  Maybe we will be heading to the same destination one day.  However if you are on United Airlines, I won’t be seeing you.

* social story – a story with photos or pictures read and shown to autistic persons to help them know what to expect  in a situation

*Weighted vest or blanket – just as it sounds, a heavy vest or blanket used on autistic persons and dogs to help with the physical experience of anxiety.

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Finally … We can breathe!

It is no secret that I have a sour taste in my mouth when it comes to puberty especially when it is combined with autism.  The autism I get because we’ve lived with it for 13 years … its the hormones and the attitude and the defiance that comes along with a youngster entering adulthood presents to you when trying to define and assert himself COMBINED with the challenges of autism that I absolutely despise.    Don’t get me wrong, I love my children but damn it if there are days when I just want to ram my head into a wall when the teen stink rears it’s ugly head in this house.  Puberty hit with Adam HARD and if there was a year this family was going to go belly up in every sense, 2014 was it!  But, we survived.  Tom and I (as much as I could anyway) kept our heads down, worked the business with the some of the most “interesting” clients.  No amount of good sense made sense to them and keeping our young business alive was an uphill battle.  Add to that a son with autism in puberty who was angry more than not and a younger son just tugging at our heart strings as he stepped up in any way he could to help us deal with his brother.  2014 was the year things could have gone either way.  We could have given up on our livelihood or we could have given up on Adam but we didn’t.  They were both our babies and we couldn’t walk away from a business or a kid we believed in. We just kept going; working the business and working our hardest to put the right things in place to save Adam from himself and damn it, we did it!

2015 started off with us getting some wonderful clients who really understood what we could do to make their lives better.  It was like the heavens opened up and sent us people who needed our advice and who were willing to listen and learn and realize that we had their best interest at heart.  Thank you God, thank you universe, thank you good fortune. (how Alanis Morissette of me).  Then, if that wasn’t uplifting enough, at the end of January in the heart of winter we  along with Tom’s sister Suzanne, his brother Martin and His wife Christa and their little ones, were off to North Bay to see Adam who made it to the Special Olympic Winter Provincial games in spite of the puberty fiasco of 2014.  You have to appreciate that we were so unable to get through to Adam, that getting him to these games was my benchmark, my taste of victory for him and a sign of his own ability to get out of the funk he was in.  I didn’t give a shit if he placed.  I just wanted to get him to North Bay, have him compete without incident and have an amazing experience and I just wasn’t sure if he or we could turn things around for him fast enough.  Well wouldn’t you know the little bugger (or rather the 6 ft bugger) had a medal sweep.  Four events, four medals – 1 gold and 3 silver.  Watching him on the podium, watching him having fun at the loudest ever opening and closing ceremonies, watching him dance and rock out to the live band at the after party, eat with his team mates and  learn that he shared a room peacefully without incident with his team mate and listen to his coaches without defiance was the first indication that we had made it.  We and he survived the bullshit combination of puberty and autism.  The plan was in place, the respite family couldn’t be more perfect, the treatment was working and he was beginning to understand that we would never be intimidated by his behavior nor would we allow disrespect in our home. He knew we loved him too much to let him self destruct and we could see that he was beginning to understand that while we were all in favour of him becoming his own person, he had to do so while learning to respect authority and having consideration for others.

And then there was Tom.  You never know why you meet a person until you see how they are in the most trying of times.  It is in these times that you realize that just maybe there is a divine plan for your life and the person you are with, is supposed to be in your life. Tom is an old school man.  You know, the ones who provide, protect and fix the broken stuff. The ones who make you feel that everything is going to be alright even when he barely believes it himself.  The one who makes you feel safe.  Tom had the hardest business year mostly because of the distraction that was Adam in 2014 but he never whined about it and he never softened or wilted under pressure.  He got up every day, kissed me good morning, walked the dog and helped me get the boys to school (mornings were particularly challenging with Adam who did NOT want to go to school), dressed and went to work, head held high even on the days he wanted to just crumble and curl up in bed.  He mostly worked alone as he gave me months of time off from the office to sort out the Adam stuff.  He came home to help with dinner and he listened to me bitch and complain about the obstacles in my way.  He tried to keep me calm (which is NOT easy) and pointed out anything positive he could find in the worst of “an Adam situation”. He made Logan’s life as uplifting and normal as possible in a tumultuous year and he implicitly trusted whatever I did to try to get Adam on the right path.  Most of all, even on the days I wouldn’t give him the courtesy of a smile, he tried to make our lives fun.  In a situation where many people would just walk away, Tom stood strong and he went to work and he paid the bills and made sure whatever needed to happen with Adam was financially handled.  He may not be the mushiest of men, nor the most vocal when it comes to affairs of the heart but his love pours out in his role as husband and father and to me that is what men are supposed to be – solid, fearless even when they are scared, resilient and reliable. Now that I think about it, it’s kinda sexy too.

This month, and more importantly this week was golden for Tom and therefore for me as well.  God was good, the universe was set up in the right way and most of all, the hard, hard work and dedication to giving people the service and care they deserve yielded the results we had hoped for.  Integrity, honesty and fairness paid off and I am happy that our boys were watching as things on the business front unfolded.  This was a good week.  This was a week that stood on a foundation built on a love I never knew I would experience, persistence, faith and 4 souls who refused to quit.  We had help from a very special family along the way, and the support of our immediate family and close friends as well and as I write this I realize just how truly blessed we are. I suppose in the worst of times, blessings come in all forms and if you aren’t careful, you could miss them as it is easy to be blinded by the darkness of hardship. Life is short and it is a roller coaster and for what it’s worth, I’d do it all again with the same triumphs and problems.

My hope for you is that you live your life in love and in hope and with faith that being at the lowest of lows only means that the only way to go from there is up.  Have your partner’s back knowing that facing hardship together will help you conquer it. Surround yourself with people you can really count on and be comfortable with the fact that it will usually be only a few.  Rid yourselves of the people and things and places that weigh you down and learn from every experience then extend yourself to someone in need. To think that this is the last of our hard times would be naive.  It IS life, after all!  But, we are in a long awaited, well deserved and beautiful oasis right now.  My soul is soaring. My heart is full …overflowing actually, with happiness and long awaited peace after a difficult year. I know myself better now and my head is clear and it is with great joy I embrace the opportunity my family has to really…finally … breathe.

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Maybe it wasn’t God … So why blame Him?

As usual when I tread on touchy territory I am going to say, this is just MY opinion. I am alive so I have one and it’s my blog and my outlet to express myself. I’m not looking to fight or prove a point so if you start reading this and you realize it is about religion and you can’t handle that, then stop reading. Some people knit or draw or eat or go on Facebook for an incredible amount of time to give them selves an outlet for relaxation and expression ….me? I write. There…said it. Done.

I don’t usually lose my head and discuss or write about politics or religion, but I haven’t had much sanity since Christmas Eve 2013 when our autistic son lost it and set the tone for what was the worst year of our lives.  Worse than the country song that was my life in 2008 when some of our investments stood on shaky ground, we lost our dog, I lost my dad and I ended it with a fractured arm and dislocated elbow.  You see, 2014 was ruled by almighty autism and it’s effect on my pubescent son. Knowing it was going to be a hard one, I posted on my Facebook status “Ok 2014, I’m ready for your ass so bring it,” and it was brought alright but I fought back and so did my husband, our 12 year old and his autistic brother.

I didn’t always fight back like a good and decent God-faring, Catholic girl.  I believe in God and I believe I am a spiritual person and I love the ritual of the Catholic mass but I have never pretended to have blind faith and I certainly don’t believe in asking God for things and having them appear in my life as if by magic.  I believe faith has kept me strong, given me courage and helped me get back on my feet whenever I was knocked down but it’s not the sole ingredient that has made me the tough, fighter that I am.  I once was told by the priest in Calgary who baptized our younger son, that a relationship with God is just that – a relationship in all senses of the word and it is absolutely fine to live it as one would any relationship.  My relationship with God is no different from that an old married woman has with her husband. She loves and respects him dearly but will not think twice to speak her mind to him, yell at him or get frustrated and angry at him.  Over the past 13 years of living with our son’s autism I have gotten angry at God and I have loudly vented my feelings to Him when I have been alone but I still believe in Him.  I believe because there has to be something greater than we hopelessly flawed humans.  I would also rather believe in God and raise my eyes and hands to the heavens than turn up my palm to another mortal who pretends to see the future so long as I can pay for their reading. (Funny … I’ve noticed while watching friends who have these readings, psychics always say “God bless” to their customers when they bid them farewell but I digress. Sorry.)

What I have come to realize during this difficult year is that it is so easy for people to ask “Why me God?” or from those who do not believe questions like “If there is a God, why would he let such awful things happen?”   And while on the roller coaster ride of 2014, I too asked “Why?”. “Why our family?” “Why my son?” and questions of the like that only accomplished two things – (a) It clouded all the good parts of this year and all the wonderful things my son has achieved and is on his way to achieving and (b) what was worse, it made me angry and anger is such an exhausting, lingering and unproductive emotion.

It was just this evening almost at the end of this ridiculous year, that things became clear.  I was riding for 2 hours in the car with my son who decided to let the kitchen faucet be his source of irritation.  I uttered a simple prayer as I usually do in such times that went something like “Please let him calm down so he can settle tonight,” and after a little time he absolutely did.  So let’s just say we can attribute that to God.  My son was calm and happily chatting with me and we were on our way to get something to eat.  As I got to the restaurant, I ordered something I usually order for him and on this night they would only serve the dish I wanted with some special coupon they mailed out.  I didn’t have a coupon and I thought “Awesome , he’s calm finally and now this!”  Once again I just couldn’t catch a simple break.  I explained the kind of night I was having and insisted they extend me one kind gesture to help me end my night and my year and make my order.  After two requests they complied but they were a little backed up in the kitchen and I had to wait with a kid who just got his shit together. At this point I thought, “This isn’t God being wicked.  I’m still gonna give him the points for my son becoming calm as I prayed he would.  This is something else,”

By this time after seeing my face and watching my boy shift his weight from foot to foot to keep himself in the calm zone, the waitress offered to bring my food out to the car.  There it was, human kindness borne out of love.  I gave that one to God too.  Things were getting better.  My son was chatting happily to me and I was on my way home with him with food for my family to end what was a long day after a trip out of town.  My husband decided to set us up with a movie in my son’s room so that he would not be disturbed by him and our 12 year old as they took in the hockey game on TV. Brilliant!  Everyone working together to create a peaceful night.  Wouldn’t you know the frigging TV in my son’s room suddenly had no audio?  “Why God?”  No, still not Him.   As my husband tried to fix it, my son was eating calmly and his younger brother decided to give up the game in the “man cave” downstairs and let us use it for our movie.  Selflessness of a 12-year-old borne out of love for his family.  I’m giving that one to God, too.  What I learned tonight is that God was with me for sure in every one of those positives and even though it seemed that the negatives that punctuated my night were some sick joke played by God, it was a sick joke played by Satan.

I think in religion, some of us forget sometimes that there is both good and evil.  Sometimes we might pray to God and wait for our blessings and when we don’t get them or when we do get them and just as quickly things go wrong, we fly in the proverbial face of God and wonder “why?”  It’s quite common and very human and very understandable to ask “why” or feel cheated or neglected but what I was able to see tonight and come back to time and again, were the good things that were happening and no matter how much Satan or evil or whatever you want to call it tried to challenge the good and test my faith, there was no victory.

My son worked hard to keep his feelings in check and I know in the teen years (then add in autism) that is difficult to do. We sat and enjoyed a movie together and my husband and son were able to see a great deal of the game.  Tonight was one of those moments when I realize just how much love there is under this roof of ours.  That it is only love that will drive us to get our autistic son to that realm of peace that has eluded him this year and that there is good in the world and for me there is God and there is a Devil.  I don’t picture them as people or figures because I feel there is not so much a man dressed in white flowing robes and another with a pitch fork and a tail. I see them both as forces that play off each other in our lives and at some point we decide to see what is an “act” of God and what is an “act” of evil. Tonight on the eve of a new year, I took the time to see the difference. Perhaps I’m a slow learner when it comes to religion and faith but I did it and I am thankful for all the good over the past 6 days our family spent together after being so fragmented all year as we tried to find the best ways to help our son and I look forward to the days to come.

If you’ve been having a rough go of things or you feel like you are wandering around in a haze of what used to be your strong faith, consider this –  Maybe it wasn’t God who messed up your day, your month or your year.   As “3 Canal”says in their lyrics, maybe it’s the one with “the fork and the tail”.

*3 Canal  are recording artists from Trinidad and Tobago whose  genre of music is called Rapso which combines traditional calypso and the rhythm and musical styling of Soca.  Canal’s work reflects a deep social awareness differentiating them from other “party or fete atmosphere” artists.

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Siblings of Autistic Children: The Unsung Heroes

It is no secret these days with our adolescent autistic son, Adam have been difficult.  It’s kind of funny that we get the whole autism aspect of his life but it’s the puberty combined with sub-par verbal expressive skills and the ability to know when he has gone too far that is kicking our asses.  To all the social support workers who know him, Adam is an extremely capable young man in spite of the challenges he faces daily and  he is also very intelligent.  They also agree with us when we say he also really knows how to be a jerk and is displaying many “normal” signs of puberty.

However this commentary is not about Adam.  It is about my other son, Logan and all the other siblings of kids with autism.  I can only speak of Logan but knowing tidbits about other families like us, I am confident what I am about to reveal about my remarkable youngster will ring true for them all.

This week, March Break week no less,  my husband was out of town for work.  I dreaded the thought of having the boys at home as since Adam began struggling with what I call a puberty surge since Christmas Eve, we are no longer comfortable leaving him and Logan home alone.  Though all the right steps were taken to get them to this level of independence, his moods are too unpredictable and as much as it feels like a disappointing step back, I don’t want Logan to be saddled with the possibility of having Adam have a mood swing that goes haywire.  Maybe one day we will get back to him being able to be at home alone with his brother for a couple hours, but for now, no way in hell.  So … I got my affairs in order for the dreaded week.  From 9 until 4 Adam was at a respite care home where he would go on outings with other youth like himself.  Unfortunately, the funds or things of interest were not there to enroll Logan in a camp but he was happy to have every day on break be like a Saturday.  He looked forward to playing on his X-Box, watching movies ( Logan calls and checks in with me to ask permission to see movies or play games etc.) and playing with the kids on the street or going to the toboggan hill with friends across the way.  At 11 he is way beyond his years …he was way beyond his years at 18 months coming to think of it …and he is a respectful, trustworthy child.  My plan was to work only 3 days a week until 12:30 and take Thursday and Friday off, which I did.  As promised, I came home to make and eat lunch with him and we spent time together either watching a show, browsing in the mall, visiting his grand parents and driving the ATV or having a treat in the afternoons before we picked up Adam from his group.

Without being asked, every morning Logan walked the dog and on the snowy Wednesday from hell, he shoveled the driveway while I was at work 3 times, telling me to keep the car parked in the garage so that my car would be free of snow and slush and would be warmer for me in the morning.  He reminded Adam to walk the dog in the afternoons,  reminded him that they both had laundry to do, engaged Adam with a game or two on the X-Box and wrestled with him to give him the deep pressure he needed so that I could make dinner and tend to things around the house.  He got Adam out of bed every morning, checked on him when he was taking way too long in the bathroom and played quietly so as not to disturb Adam if he went into bed early.  If Adam was a little testy or upset, he would check with me to see if I was okay handling him and while all these actions made me proud, it broke my heart a little as I didn’t have a little boy but an 11 year old man  who was determined to fill his father’s shoes in his absence.  I would have been lost without Logan’s help this past week and I made a point of telling him just how special he was to me and how proud I was of him.

So here’s to Logan, who at 18 months was pushing his highchair across the kitchen floor to climb to the freezer to get his milk while I was on the phone with his brother’s therapist….who at 2, was the only person who knew why his 4 year old brother was screaming endlessly when tugged on my pant leg and said “him kaying…him want possicle” and pointed to the freezer….Logan who at 3 came to me when I was shouting in frustration at a child who seemed impossible to understand and said “Calm down momma…you scaring him”…here’s to you my darling boy…for being the voice of an angel over the years, for waiting and waiting and waiting your turn.  Here’s to you for going out of your way to help Adam “be cool”…  for sticking up for him when kids were mean to him,  for riding your scooter with him to make sure no one bothered him and for all the hours you spent volunteering at his Special Olympic meets while cheering him on.  Here’s to you for taking him on all the rides at amusement parks when Dad and I were had no more riding left in us…here’s to you for being his only real friend, his best support worker and his big brother in so many ways.  To Logan, and Quin and Wesley and Darren and Sara and Cait and so many other truly fantastic, mature beyond their years and accepting siblings, our families are so much better because of you and the world is a better place with all of you in it.

I have always said while Adam is my heart because of his autism and how much we have done together to overcome so much, Logan is my soul because even in our darkest moments on this journey he fills it with such joy.  Logan is a taste of normal in a very abnormal way of living.  He is the hope that other people could look upon others like his brother with respect, caring and kindness and he is an example of a human being that all human beings in the world should strive to be.

I am blessed to have a unique and special child in Adam and I am equally blessed to have the most beautiful and giving soul as a second son.  To anyone reading this who has a “Logan” or knows a “Logan” in a family like ours, make a special effort to make a moment in their day special and hug them and thank them for who they are and all that they do.

“When you and Dad are old Mom, and I put you in the old folks home, don’t worry …me and “Aamm” (never says Adam) we will come and visit you from Calgary.  I’m taking him back there to live with me and my wife and if she don’t like it, I’ll get a wife who will cause ‘Aamm”, he’s gonna live with me!”  ~ Logan James age 5