autism

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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
Leave a comment Posted on autism, parenting, special needs

Surviving the Loop the Loop – The Prodigal Wallet.

When Tom and I renewed our vows on our 10th anniversary in 2007, he talked about the incredible ride we were and still are on and that the only way to truly enjoy a ride is to not know what is coming and sit tight and ride it out when it goes chaotic and random. Well, we only know chaotic and random and this year certainly we endured many loop the loops on the ride that is our life. We’ve had a lot of experiences that created new feelings; new ways of doing things; looking at things, that I suppose, took me by surprise. There was not a lot of time to write this summer but on Labour Day weekend, with one day to go before school started, I sat in my little home office, in front of my old friend Laptop, my fingers retrieving stories I had tapped out about our wonky family life. This is the story I wrote about Adam’s lost wallet in May 2018.

Today went down hill when we realized Adam’s wallet was missing. I usually have stuff they can grab from the fridge or freezer that they could warm and take for lunch but it’s been a hectic work week and I remembered Adam had 5 bucks in his wallet and I decided he could buy his lunch at school, since there was nothing he really liked in the fridge that he could take with him. Court was working with him lately to try and make sure he checked for his wallet and his phone to teach him how to be responsible for his things and she thought it was secure in his coat pocket when she dropped him off after the movies.

My autistic teen does not really get the seriousness of losing his wallet and at times, has a really sketchy short term memory, so getting the clues needed to piece together where it might be, was for this mother, quite stressful. We retraced steps and even called the police to see if anything was maybe turned in. The only place left to check was the theatre but when school is on, there is no staff on site until about 3:30 pm. The mental weariness of knowing I had to cancel his bank card and then looking up the procedure of cancelling his ID card and health card numbers just started to swirl inside me like a tornado and then I, the non-crier started to sob.

“He’s not ready,” I cried to my husband. “He’s never going to be ready and if we are not here to help him who will really care? Who will turn every stone looking for his wallet? Who will try and get the clues out of him and who will look up what to do and make the calls?”

My patient, patient husband, kissed the top of my newly grey haired head and told me simply,”Someone will,” He told me that as capable as Adam is, he will always need help with the fine tuning and that losing the wallet was a good lesson for us because when it happens again (and it will) at least we know what to do and this experience will help us figure out ways to lessen the number of times something like this would occur.

So, while Tom held down the fort at work today, I worked from home and also worked on cancelling Adam’s bank card. I decided I could at least prevent someone from accessing his account but would wait on cancelling the other cards until we checked the movie theatre. Let me just tell you that losing your wallet is one thing when you don’t have special needs, it is a complete gong show when you do. Last year, in the fall when Adam was still 17, I set up his new bank account so he could collect his ODSP* the following year upon his 18th birthday. It had to be a joint account because he was still a minor. I set up accounts for each son and all was well. Now that Adam is 18, I was not able to cancel his card even though his account is a joint account with me. He needed to call in himself. After explaining that his autism would make that scenario difficult, I finally got the bank to at least freeze the account until we could cancel the card. They struggled because the millennial on the phone did not have a field on his computer screen that could help him make allowances for exceptions like Adam. No word of a lie, that was what I was told. I suggested he maybe ask a manager to help him figure out a way but he was a millennial too (not to knock them all) and said if there was no field on the computer screen, there was no way. Adam had to make the call. I started laughing this insane cackle. Adam. Adam had to make the call. Adam, who HATES talking on the phone, especially to people he doesn’t know. Well, the whole family had to be in on that because it takes 3 people to help Adam get through scenarios that other people could navigate with ease.

When the boys came home from school, Adam made the call. When asked his full name he answered John Adam James and he also added “I’m looking for my wallet” to which the person on the phone said ” Oh, I just need your name at this time,” to which Adam said, “John Adam James and I am still looking for my wallet,”.  The rep realized that this was the point in the script that called for that thing called human empathy and he said that he understood because losing a wallet happens to everyone. It was a sweet attempt because it was clear to him now that I was not bull shitting when I said talking to Adam was not going to be easy.

Adam proceeded to give his date of birth and his address however when it came to remembering the branch where the account was set up and what the answer to the security question should be, Tom had to whisper so he could answer correctly as I was not allowed to “coerce” him. Then by process of elimination they needed the card number and the boys accounts are joint with me so we had to read out the other two card numbers to isolate Adam’s. I read mine and Logan read his and had a blast taking his turn with the guy because by this time Adam was antsy and scripting quotes from movies and it had become significantly louder in our house. Adam is talking, Tom is trying to settle him down so Tom is talking, I am just laughing and Logan is well,”Loganing”.

“You ready for my information, Sir?” he began.  “Listen up because it’s getting loud. That’s what it’s like living with autism. See, this is what we were trying to explain to you. He can’t answer you alone. That’s just the nature of the beast. You would have had an easier time talking to Mom,” he said, as polite and jovial as always, schooling all the while.

Fast forward, we got the card cancelled, ordered a new one and a new PIN all before we found the wallet at the manager’s office at the movie theatre when they finally opened. For all the absurdity, I was disturbed to know that those who have no voice, those who struggle with conversation, those who need and have advocates, still in many areas of our daily lives, still have no voice. Losing a wallet is an inconvenience for us but a disaster for them. If my son had been non-verbal, how would I have been able to cancel his card? I learned too that for his ID card and health card and any government issued card, he would have to go in person to fill out the form and sign his name. Easy enough for Adam with a bit of help for the form because he does read and write and can sign his name but what about those who can’t?  If upon getting these important documents one can see that a person has a disability, why can’t the powers that be, find a way for those who can’t speak or write to skip the usual formalities and get straight to the matter of protecting them from identity theft and fraud? They need help getting these documents in the first place so they’d obviously need help when they are in situation regarding a lost or stolen wallet.

Today, formality and strict regulation was ridiculously humorous for a few seconds and then it became downright irritating and painful for my son. It took almost half an hour to cancel his bank card over the phone because a customer service rep was only able to stick to the one way of doing his mundane job. I could hear how flustered he was getting trying to speak to my son as if her was just another customer. But Adam isn’t just another customer. Adam is representative of the now 1 in 45 persons diagnosed with autism and he is one of many persons who struggles with verbal communication. Sure he can speak but he cannot conceptualize things the same way we do. Things are different for him because his brain is wired differently and he lives in a world that has evolved tremendously in many ways to incorporate people like him, but it is also a world that is also as inflexible as it was 40 plus years ago.

The day, however, was not completely stressful. We found the wallet with the 5 bucks and all his cards inside. It was reassuring to know kind, honest people still exist. I hugged the movie theatre manager tightly and she hugged me back saying she had never met anyone so grateful to find a wallet. Adam had to go to Tim’s for a frozen raspberry lemonade with Logan to settle himself after his stint on the phone and did not come with us to claim his wallet. To be honest I was prepared for a struggle to get it back if it was indeed found, because he wasn’t with us but the manager came out, asked me what colour it was, who it belonged to and what was in it and presto! She got the description, she realized we must have been his parents and we didn’t have to sign anything. She understood our situation and she made a human decision. She didn’t worry about formalities or rules. She was just happy to return the wallet. She was happy to help. Most times, that’s all people like Adam and parents like us need.

On the ride back home Tom glanced at me and said the most wonderful thing I’d heard in a while. He said, “You know you gotta love being a parent when something great happens to your kid and you feel fantastic! It didn’t happen to you, it happened to them but you just feel great! Today we lost a wallet and it took us down a worrisome road where we questioned if Adam was truly ready for independence and for better or worse, he spoke to a stranger on the phone and answered many of the questions without our help . And while we were stressing over his wallet, we received great news about Logan. Watching Adam’s big smile when we returned his wallet was like watching him look at me for the first time all over again. Just a feeling of pure joy, you know? We got great news about Logan and we found Adam’s wallet intact. Nothing beats being a parent when you have a day like today!”  Ever the optimist, I dare say, he’s so perfectly, completely correct.

 

 

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Human-Kind

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

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

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

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

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

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

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

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

 

 

1 Comment Posted on autism, parenting, special needs

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Leave a comment Posted on autism, parenting, special needs, Special Olympics, sports, Uncategorized

The Meaning of the Word “Special” in the Special Olympic Games

“The genesis of Special Olympics was a summer day camp that Sargent and Eunice Shriver started in the backyard of their Maryland home. In July 1968, the world witnessed the first International Special Olympics Games at Soldier Field in Chicago.” (Special Olympics Website)

red-ftr-logo special o logo

When my son’s speed skating coach put our son in his first Special Olympics event he was just 8 years old.  She told me she saw that he was capable of learning how to race and in time he could become a great competitor.  What I heard was that he was good enough to compete with people with special needs and that he would race in an easier category of games.  Dealing with Adam’s diagnosis was the biggest blow to my husband and me as parents, hearing that he was good enough to compete in the Special Olympics was not as heavy a blow but it was confirmation that he was different and that there was a place for different.  I would be lying if I said it didn’t bother us a little. What I couldn’t see at the time was that having a place for different was very good thing. What I did learn, was that different, over time, could learn to perfect a skill and that natural talent could be turned into something fulfilling, something to be proud of and something remarkable that amazes us every time. Thankfully, in spite of ourselves and those initial unfounded feelings  we decided to take a shot at having him join the Special Olympic Program and compete in the games.

His first race day came and we suited him up, explained over and over again what was going to happen and what he had to do.  We told him that his grandparents and little brother and we were there to cheer him on and all he had to do was skate.  He started to fuss and cry and instantly my husband, being the caring and protective father that he has always been was ready to pull him out and take him home.

first race

“He’s not ready, ” he said.

“He has to get ready sometime.  We have to at least try one race,”  I urged.  My husband shrugged and unwillingly joined his parents and our younger boy in the stands.

“Adam, are you scared?  Are you a little nervous?” I asked him.  He stopped fussing and looked at me with his glassy, big, brown eyes and gave me a slight nod.

“How about you wear your bike helmet instead of the racing helmet they gave you?  Would that feel better?”  Another slight nod.

I swapped the helmets and kissed him on the cheek.  “Now listen.  You are fine.  This is the ice you skate on every week. Just skate and keep going until someone tells you to stop, ok?”

He didn’t nod or say anything but I could tell he was more comfortable.  I remember that first race like it was yesterday and it still makes me smile.  It was the birth of the chants “Go Adam Go!”  “Keep going buddy!” and “Skate hard, skate fast Ad!”  Our little autistic boy skated right to the finish line and crossed in first place in his first race.  His coach ran up to us beaming and said “He did it! And he’s only 8!”  Race after race that day, Adam crossed the finish line in the top three and got the taste for competition and fun.  It was on that day that our family learned the meaning of the word special in Special Olympics and the warm feeling it created inside me and it was a feeling that has stayed with me for 9 years and will stay with me forever.

“Emanating from the mission, the ultimate goal of Special Olympics is to help persons with intellectual disabilities participate as productive and respected members of society at large, by offering them a fair opportunity to develop and demonstrate their skills and talents through sports training and competition, and by increasing the public’s awareness of their capabilities and needs.  The Founding Principles support this goal by emphasizing that people with intellectual disabilities can enjoy, learn and benefit from participation in individual and team sports, underpinned by consistent training and by competition opportunities for all levels of ability.    According to the Principles, Special Olympics must transcend all boundaries of race, gender, religion, national origin, geography, and political philosophy.  They also state that every person with an intellectual disability should have the opportunity to participate and be challenged to achieve their full potential, with the focus at community level to reach the greatest number of athletes, strengthen their families and create an environment of equality, respect and acceptance.” (Special Olympics Website)

The Special Olympics events are not about competing with a disability or a challenge.  It is about competing in spite of them.  It’s not about competing at an easier level but about competing at your highest level and over the years I have seen athletes in division 4 persist and find themselves competing at a division 3 level the following season, each season inching closer to a more challenging division because when athletes with challenges are encouraged to achieve their personal best, the sky is their limit. The Special Olympics Program is about inclusion, expectations, goals and the freedom to participate at one’s best in a sport (or sports) one loves.  It is about achievement, pride, sportsmanship, freedom and most importantly it is about fun.  The Special Olympics is about teaching anyone willing to learn that given enough patience and time, everyone can achieve greatness and everything is possible when an opportunity is given, when words of encouragement are spoken and when there is enough support. It reminds parents and coaches and volunteers that there is so much good and so much talent and joy in each of these athletes and it makes us dig deeper within ourselves to do right by them by finding the energy  and time and love to give them the training and support they crave.

Our son Adam found his freedom in sport.  It is a release valve for him from all the pressure he must feel when he has to cope with the daily goings-on in his world. It has allowed him to be a part of not only the Special Olympics team but a part of his speed skating club and high school track team. The inclusion and sense of purpose Adam gets from his sports have given him so many positives to draw on in his life. Before he joined the Special Olympics program, I did not know if Adam would find his niche in the world. We never thought he would find his passion and because he plunged into a deeply private, puzzling and exclusive world his father and I didn’t think we would be able to find a life line strong enough to draw him back to us.  Now here we are, proudly watching a young man who used to be such a lost little boy cross numerous finish lines, with incredible times and speed, breaking records and standing on podiums proudly wearing his hard earned medals. What a long, winding road it has been! What a great journey that is going to keep going way past our lifetime as parents.

The Special Olympics has given him the opportunity to make friends, to travel independently of us and the opportunity to perform at his very best.

 

Our boy is FAST and now that he is older, his ability means something to him and I believe he is very proud of himself.  He is okay if he doesn’t win (well, sometimes he’s a little frustrated with himself when he loses) but he certainly understands and appreciates participation as much as he appreciates being on the podium. Adam has represented his club, region, and province in speed skating and for the first time he represented his province in track and field.

These games are a pleasure to watch.  They are as competitive, fast and exciting as any competitive games that exist and the athletes are well trained and possess the physical attributes to compete.  It is fulfilling to watch people of all ages, sizes, shapes and challenges come together in the spirit of friendship and competition.  There are smiles before, during and after each event as they race before their friends and families who cheer loudly and proudly.  Expectations are high and every effort is applauded.  I have never been to an event more encouraging than a Special Olympics event. I am so grateful for these games for what it has given to my son, his fellow athletes and families like ours. Adam is going to compete for years to come and he is going to experience that joy and accomplishment every time in both the summer and winter games.

 

blog 10     provincials with dad

To me, the word “special” in Special Olympics does not mean disadvantaged in any way.  It is more of a description of the feeling you get when you attend these games.  There is a warmth and feeling of goodness at the venue and there is an aura of happiness because win or lose, these athletes know they have worked hard, have overcome many challenges and have given their best effort to get to the games and their sense of pride and confidence is so high it creates an infectious feeling of goodness.  I encourage everyone to visit the games when they are in your area and see for yourself why it is so important to keep these games alive year after year. See what the games can do for you.

http://www.specialolympics.org/RegionsPages/content.aspx?id=40725

Go watch. Go cheer.  Go be amazed at the Special Olympics.

I’m not the only parent that feels this way. Read more about the effect the Special Olympics has had on the lives of athletes and families worldwide.

http://www.specialolympics.org/SimpleStories/SimpleStory.aspx?id=42527

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

http://www.specialolympics.org/RegionsPages/content.aspx?id=39851

http://www.specialolympics.org/Responsive/Ashley-Setting_Goals.aspx?src=homestorylist

http://www.specialolympics.org/Responsive/Revolution_for_Unity.aspx?src=HomeStoryList

As parents and care givers we have fear.  Can a person we know with an intellectual challenge learn a sport?  Will they have difficult behaviors borne out of frustration during the learning process? Are they coach-able?  There can be so many questions and technically they all originate in fear – our fear.   Then there are parents and caregivers who have given up and honestly, that is understandable. Raising and caring for someone with special needs is exhausting and complicated but wouldn’t it be better for everyone concerned if the person with the challenges has an outlet…has something to look forward to…has something new to learn with goals to set and achieve?  Wouldn’t it be great if they were able to leave the house and travel with their team for a few days?  Wouldn’t it be rewarding for everyone involved to see the person soar?  The answer to all those questions is YES.

Don’t be afraid. Here’s how to get someone with intellectual challenges involved in the Special Olympics.

http://www.specialolympics.org/Common/Special_Olympics_A_to_Z.aspx?aspxerrorpath=/Sections/Who_We_Are/Our_Athletes_2.aspx

Thank you Sargent and Eunice Shriver.  You have changed the lives of countless intellectually challenged persons and their families for the better over the years and for years to come. As Adam’s mother, I am thankful you did.

ribbons2adam recentribbons

 

 

 

 

 

 

 

 

 

Leave a comment Posted on autism, parenting

Like His Brother the Man-Child, the Almost-Man Is Ready to Take Flight and Soar.

Two days out of the Victoria Day long weekend were gloomy, rainy and chilly – the perfect atmosphere for a Tom and Daniella Netflix marathon.  On Friday night, Logan, our 14 year old, had just finished watching the series 13 Reasons Why and he said he found it well done, accurate (give or take a few unrealistic things) and intense and suggested we give it a try.  I had seen the press on it and planned to watch it anyway and it did not disappoint with regards to it being gripping.

I think 13 Reasons Why is somewhat today’s teen’s version of what the movie Desperate Lives was to those of us who are in our late 40’s and early 50’s.  The important thing to remember here is the two shows are similar with regards to certain content and are similar in impact but like today’s teen, cannot be compared to our generation’s teen experience.

In spite of the fact that puberty and its side effects have been around since  Homo Erectus strolled the planet, it’s effect on each generation has always been dependent on the world’s environment at the time. So, what I’m saying is, hormones have been raging and clashing for centuries – sometimes against the walls of caves, sometimes in a log cabin in the middle of a forest.  At times they were being harnessed in tightly by waistcoats, corsets  and chastity belts and another time they exploded out of bell bottomed jeans, floral tops and naked bodies at Woodstock.

In my time they bounced off video screens in nightclubs, bounced around on sandy beaches, on beds in house parties and in the back row of movie theaters. Now those hormones are flying through cyberspace, popping up on  and    every single second of every single day.

The speed at which this generation of teens receives and sends information, is so rapid that their hand eye coordination is so much more advanced than ours.  I feel that we should sit back and applaud them once in a while because of how tech savvy they are.  We admire it in babies and in the occasional old person but sometimes we criticize the same abilities in teens. Rather than criticize what we think are the shortcomings of teen use of technology today, we need to try and understand it, embrace it and talk about it with our children so that they use it in a safe and responsible way.  It is the hardest part of parenting, I think, keeping up with the times and technology – knowing what to say and when to be quiet…knowing when to step in and take action and when to be patient and wait for them to come to us.  It is a precarious balance of knowing when to take that next step to the end of the tight rope of adolescence and when to hold your position, be still and let the whirling wind subside.   We struggle not to get left behind so that we can help them (or in some crazy cases, spy on them) navigate their way through this tumultuous yet wondrous time so that we can birth well adjusted, multi-dimensional, independent, respectful, generous, kind and happy adults.

I hear all the time that teens today are oddly quiet, lack focus, secretive, lack respect and are entitled. Weren’t we from time to time? I hear that they lack people skills because there is a lack of human contact because of their phones.  While there is some merit to these observations or criticisms, I have two things for you to ponder –  1) You can have a real problem with inappropriate photos, cyber bullying and luring and it is imperative to speak to them about safety on line but in their casual chats with each other … well, they can’t get anybody pregnant on  or   …you still have to physically hook up for that.

2) I remember therapists saying I had to help Adam work hard to socially interact with his peers. Well one day at a speed skating meet Adam was bouncing a rubber ball and I told him to go and be with his teammates and try talking with them to which he responded “Why? They are all texting and  their moms are texting,”   Touché Adam.  We are all becoming like you.  The whole world is already connected by devices and soon, the spoken word; meaningful verbal utterance will be no more and your “autistic lifestyle” as it were will be globally adopted.

Any adolescent will tell you their phone is vital to them like air is to all life and without it they are stranded, disconnected and basically screwed.  Their phone (which they rarely use to speak into unless they are talking to Siri) is like the telephone with the long, long, long cord we had in our room that we would put under our covers late at night so we could talk repetitive chatter (what is to me now at 50, repetitive bull shit).  Their phone is how they talk to each other, get creative, do homework, create problems, solve problems, check their schedules, chat with their teachers, take photos, listen to music, make music, say “I love you”, say “I hate you”, make mischief and sometimes wreak havoc and pain.  But, as a mother of two very different teens, I will tell you, even though it took me some time to open up to it, I do praise technology and the era we live in and all the things that we can do better, faster and more effectively. I applaud it and I allow it because I worked through understanding it, figured out how to control the use of it and how to release that control to them over time because we have made our children understand that at any time we have a right to check their phones and we have the right to have open discussions with them about proper used of their technology. They understand having a device is a privilege and by no means a right.

Today’s teen. Yes, their spelling without spell check is utter shit at times.  Sentence and paragraph construction, disastrous; handwriting, illegible. But consider this – do we speak ye olde Shakespearean English anymore? Do we use slide rules? When was the last time you saw a T-square sticking out of a kids back pack? Don’t many of us use computers and tablets instead of notebooks? We send e mails in lieu of letters by mail. We can take a photo of a cheque with our phone and deposit it into our account. Times change as they should.  Pretty soon we may not need our pinky fingers…we’re all thumbs now, really. I guess what I am trying to say is, while I agree we need to continue to hone in on teaching them the value of trust, self respect and respect for others, work ethic, punctuality, responsibility, empathy and all the attributes needed to make great human beings, we need to find a comfortable functional balance between parenting and friendliness and between guidance and control and vigilance and trust.

13 Reasons Why not only opened my eyes to today’s teen experience, it opened my eyes as to how they must perceive us as parents.  We can play it too cool, we can be too strict and not strict enough. We can be stupidly unreasonable, we can be unavailable, distracted, too trusting, too naive and too friendly.  We can also be too chatty, too intrusive and too controlling. 13 Reasons Why made me review my parenting skills regarding my own teens, which I think we should all do from time to time. You know, examine what works, what doesn’t. what to keep and what to change. Reflect on what the communication is like in the home between them and us and how can we keep them talking to us no matter what.

I know parents who are super strict.  They love their children as deeply as anyone and they use rules and control and have no problem dropping the discipline hammer when they have to. Some are strict because of their own shortcomings and mistakes in their own teenage years. The old do as I say but don’t ever do as I did. Others try to be friends with their children.  They even the playing field and blur the lines between parent and child and run the danger of losing the ability to guide their kids, give them consequences and maintain respect as a parent.  Kids want parents to be parents. They don’t need  or want you to get them whatever they want but they will sure take it if you do. They want their own friends and want you to get friends your own age.  They want you to be happy, especially if you are raising them on your own but they don’t want to come in second to your boyfriend or girlfriend. They will grow up and move on soon enough… too quickly actually, and they really do want you to be present for them.

On the other hand, I’ve known parents who place too much faith in their teens and are absent from their lives even during the moments when they are in the same room together.  Heck, sometimes they don’t know if their kids are at home.  Remember when you were a teen?  You loved to hate your folks and you hated to admit how much you loved them, wanted them and needed them.  Teens are adults in the making but they are also adults slowly gaining the independence to leave their childhood behind. I think moving from your teens into adulthood is like slowly taking off a sticky bandage. Sometimes it feels okay and sometimes the pain is maddening but bearable and other times it’s just frigging harsh and the pain can bring you to tears. At times teens think they are ready for everything but truly can only cope with a few things and they want parents to be interested in them, want parents to hassle them, want the consequences, the life lessons, they want love and they want parents to care  about all that they do even if it makes us angry.  They want us to always step up and parent, no matter what comes out of their mouths. It is the craziest love-hate relationship sometimes but it’s how they learn to be grown ups. They need us to lead by example, hold them accountable and remind them of the consequences of their choices.

Right now, I am in a band aid ripping situation with my second teenager.  I miss who he was … a lot! I guess I miss the kid because I am afraid to acknowledge the man that is emerging. He continues to have all the wonderful attributes that have always made us proud and has even become more confident (which is great) but he has changed  a whole lot in a short space of time and I have to get over myself and the emotions I am having over his change.  We are, I’d still like to think, quite close. He talks to me and includes me in what goes on with him and he really is a good son.

Last year was rough in his world as he had to navigate around some unfair hiccups that concerned the thing he is most passionate about. He was angry and hurt but took my (and his father’s) support and advice and worked on himself rather than focus on how he was wronged in the past and what he could not control. Add to that, he was transitioning into high school, hoping it would be better than elementary school, not really knowing what to expect. During the past year, his life was a roller coaster of weird events. Just when things looked up sometimes, plans changed and he was disappointed yet again but he continued working hard towards his goals and improving himself; continued to follow his path and when things finally looked up again, he broke his arm.  But, the Almost-man as I sometimes refer to him, took it as part of his journey and just as we were getting close to the end of a trying year for him, he had one of those “just not your day” days and in reflecting upon it with me, he, in a very emotional conversation he told me about the areas where he no longer needed us.

Shooing his father back up the stairs, I listened to and watched this long, lanky Almost-man who used to be this robust, solid little sumo type creature with his big head upon which a bright blond bowl cut sat for years.

My cherub was telling me to back off in the best and most decent way he could, in a moment of frustration with himself and with us.  I sat there and knew instantly how my parents would have reacted if I had even tried to say what he was saying. My parents were of the “we are your parents and we alone know what is best for you” era where being young meant you were basically foolish and inexperienced and anything you had to say was solely driven by infatuation or some other adolescent induced emotion. Their reaction to something like what my son was telling me would have been expected and I suppose justified considering the era when they were parenting teens but I don’t want to be shitty to him at a time when he is upset over something that is important to him, I donèt want to be a know-it-all, who would raise my voice over my child’s and dismiss him with a hand brush. I make an effort to be careful not to say or do anything like my parents would have have done because I am parenting in a different time and I don’t understand everything but I do know how it feels to be passionate about something and how defeating it can be when in spite of all your hard work, it beats you up from time to time before you reap the good stuff it yields. I also refuse to tell them that I didn’t understand what could be so bad after all we give yo them and definitely would not tell him that “teenage years is really stupidness, oui!”  I hate lessening the importance of something to someone just because I don’t understand what they get out of it.  I hate telling someone they have no reason to get angry, or cry. I hate reminding people that they have it so much better than others when all they really want to do and need to do is be upset in that moment and I don’t like flaunting the ego charged “I am your mother and it is my way or the high way” over teenagers.  For Adam (the Man-child) because of his autism and his struggle to understand consequence sometimes, we have had to remind him that he needs to respect us and that he does not run the house but I know and believe it is important to respect his feelings, his likes and dislikes and that it is not up to us to make him do everything our way. Plus, with autistic people, you can try to make them fit your mold but it ain’t gonna work!

While listening to the Almost-man, I was able to also pick out the drama and I knew in time he would learn to diminish this drama used to embellish a story and learn to focus on the problems at hand and solve them rationally.

Most of the time, I get it wrong with my sons in moments like these when they are bent out of shape over something that to me, on the surface, seems to be blown way out of proportion.  I get it wrong because I am fifty and not there anymore but if I try hard there are times when I do understand or remember how it feels to be awkward, oversensitive and confused.  But as I sat with him, the realization that his wings were beginning to spread and he was on track to using said broad wings to fly away from me, hurt a little. But why shouldn’t he?  After all, that’s what we taught him to do, right? My husband and I always wanted to put two happy independent people on the planet. His older brother, the Man-child, was ready to fly away at 6 and I suppose his personality even back then prepared me for helping him get ready for independence in spite of the obstacles of autism.  He was not taking any form of smothering or helicopter parenting at all and that is why raising him has been so challenging. He is the kind of hero who wants to show everyone he can do it all without giving us the opportunity to teach him just how to do all these independent things.  However, in spite of himself, he has and still is learning and is on his way to the independence he craved since he was 6 years old. The Almost-man on the other hand was the child I could have a conversation with.  He is a loving and affectionate person and wanted to be a part of everything we did beyond the age of 6, unlike his brother and now that he is ready to sever ties somewhat, I am proud as I am pained. But…that is my problem. Not his.

In his emotional conversation with me that night, the Almost-man was letting me know in the best way he could that he was ready to handle some of his issues on his own.  He was letting me know that he did not need our opinion on everything and that sometimes when he did what we told him to do, it didn’t feel right to him and things did not work out any better.  He told me that sometimes he wanted to feel shitty and mad and wanted to get over it on his own without us…without me …always trying to make it better.  He told me that he has listened to us his whole life and he understands everything we have taught him and that we have to trust that he is going to make safe and smart decisions and that he will still keep us informed about where he is and how he is getting there and will respect our opinion with regards to how long he is out and where he is not allowed to go and will keep in mind all the rules and guidelines we have set.  He also assured me that he knew that having Adam has affected the way I feel about him and he basically outed me with regards to why I am so protective of him even though I do work very hard to give him his space.  He said he knew having a special kid was tough and that he understood that he is our only “normal experience” with a kid but now he needs and wants his space. I was given examples of when our ideas and opinions secretly infuriated him. There was a not-too-long list of annoyances but it was a list nonetheless that took me by surprise but he had a point.  We were hovering in some ways without realizing it and it was making him feel like he was caught in vines fighting to break free.  Then came the sentence to end the night like only a mature man could,

“I know all that you do is because you love me.  Let me use all this love and upbringing to see what I can do on my own,”

Mic drop!  Bravo!  And yes, absolutely, my wonderful, intelligent, intuitive Almost-man.

If I were to take a snapshot of our home and our lives, it would look pretty much like many people’s at the stage of life we are in.  Yes, I lose my cool when I am given disrespect or the occasional attitude. Yes, rooms look like pigsties and smell not-so-great at times.  I lose my mind when a wet towel is left on the floor and I don’t like it when they put off doing their chores.  There are arguments and closed doors behind which they dwell for hours on the days they are actually home, coming out only for food and to use the washroom.  There is occasionally a parade of missing dishes that come from a room across the hall or from a room in the basement that they do eventually wash while giving me an impish grin.  My husband and I feel like we are suddenly living with roommates we don’t remember signing up for. Roommates who aren’t always as clean and orderly and as helpful as we would like.  Roommates who take way too long showers, monopolize our Netflix and our WiFi and data who look at you with blank stares when you complain. They are like frustrating roommates who eat everything in sight with an opinion on everything and there are days when imagining retirement without them is like imagining living in a perfect peaceful paradise. Then there are the days when we talk about school and friendships and the goings-on in the lives of their peers.  There are days when we watch a show together or share a snack in the kitchen while I am reassured that they are coping with their lives just fine in spite of puberty and adolescence. When we talk openly, I am elated and relieved and more educated about their world.  I think our unlikely roommates are both going to be okay but I am always going to worry about them I suspect and like the lyrics of Helen Reddy’s Candle on the Water suggest, I hope they remember I’ll be their candle on the water and that my love for them will always burn. And while I miss singing that song and dancing with them holding their chubby little infant bodies close to my heart, I know I have to let them go.

So, I will say this to you my boys… Man-child, I understand you; I always have.  I accept your headstrong ways and your quest for freedom and independence and we have set you up for just that. Almost -man, I know you well and I have faith in you but I am going need some time to get over missing the little boy you were while being proud of the man you are becoming. Your futures are bright my boys and I am proud of you both (even when you frustrate me and Dad) and I can’t wait to turn and read the next pages in the chapters of your unique and admirable lives.

 

 

 

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Adam is 17.

Dear Adam,

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

Disney-2011 and 2013

50977340007

Disney-2011 and 2013

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

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

Baby Adam

Baby Adam

to this person,

Adam the kid

Adam the kid

to this happy guy, the-kidmore-adam

How much and how quickly they grow and change

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

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

under-the-smiles-worry

Under the smiles, sometimes there was worry.

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

IMG_0911IMG_0091disney-boys

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

goofy-us 

Great Wolf Dad

Great Wolf Dad

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

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

Adam's Art

Adam’s Art

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

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

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

Stacked

Stacked

"Just Dance" with Dad

“Just Dance” with Dad

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

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

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

Our unique, quirky and cool Adam

Our unique, quirky and cool Adam

tries-anythingadam-horse

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

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

Adam helping out with chores

Adam helping out with chores

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

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

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

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

Adam's confirmation

Adam’s confirmation

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

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

Only Adam will order a veggie burger with bacon.

Only Adam will order a veggie burger with bacon.

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

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

Adam at The Script Concert in Toronto

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

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

 

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

We love you. You make our world complete.

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

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

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

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

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

 

 

 

 

 

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On the Eve of Fifty, Everything’s Just Fine.

We have swapped pumpkins and cornucopias for holly wreaths, twinkling lights and Christmas trees and the weather has finally changed.  It is still rather mild and we have had only one snowfall  and although everything has pretty much melted, winter is officially here which means my 50th birthday is less than 2 months away. For the past two years I have blogged about the goings-on in my life as I approach this milestone.  I looked at myself, looked at the way I approach things and and the way I live my life and somewhere along the way I had this notion that I would have it (my life) all figured out with all the answers to how to “be” as a 50 year old and on the day I cross into that year, I somehow will start this next stage of life differently. Along the way it felt like I was preparing for a trip to a foreign land, learning as much as I could from my experiences so that once I reached my destination I would be free of all doubt and confusion, ready to accept the wondrous things that would come with new territory. But with barely 2 months to go, I realize there is no new start, no expectation of anything remarkable save for the fact that I have been blessed with a good and healthy life and have been able to walk this planet for 50 years and for that, I am thankful.

Lately, I have been driving a lot for work and while it can be exhausting, mostly I look forward to my road trips where I’m in the car by myself, listening to music that matters to me and basking in that glorious time of reflection and peace.  I also had the house to myself this past weekend, the boys busy with their lives out and about with their sports, leaving me to care for the elderly dog.  Having been on the road for 4 hours of my 12 hour day and coming home to the silence of a man free house, I was able to continue my thoughts on turning 50 and what I have done and where I am in my life now, decorating for Christmas all the while.

I busied myself trimming the tree and thought about what I view now as the absurdity of my teen years. Everything was way too important and ever so highly embarrassing.  God bless them, but teens are just not fit for society. They need time to flounder and they need to be allowed to sort out their unready-for-adulthood brains in their own way and in their own time with as much or as little guidance from us as they approach their 20’s.  My teenage years were no more special than any other teen’s. Not quite a woman but by no means a child, there was just no perfect place for me.  I was confused, I had occasional clarity. I was bursting with self esteem then riddled with insecurity.  I yearned to fit in, was desperate to stand out, longed to be cool yet craved to be alone and invisible. I wanted big boobs yet secretly wanted my small ones to go away because I hated that my body was changing.  I wanted to wear make up and be fashionable but I loved being in a t-shirt, shorts and running shoes. I was the graceful dancer with every hair in place pulled into a tight bun on the one hand and the sweaty, after lunch break. tennis and volleyball tomboy with hair flying everywhere or tangled like a nest on the other.  I wanted to be independent yet expected my parents to conveniently make things right, right away – which of course never happened, thank goodness.  I wanted a boyfriend, I wanted to be free, I wanted to go to parties and be allowed to do some of the things other teens were able to do but my parents were fairly strict and did not often allow me to go out late at night before I was 18.  I thought that life was great and I thought it was unfair as I drifted in and out of confidence.  In my teens, I realized that my childhood passion for the arts continued to give me great joy.  However it was a passion but I was made to understand would not yield great earnings and that I should turn them into hobbies and while I did resent my parents for this particular guidance, I know they were doing what they thought was best with the knowledge they had at that time.

As I looked back on my 20’s (which for me was a more polished extension of my teens), I smiled as I recalled how adrenalized I was about everything.  I was young and eager to make a difference clear enough for all to see.  In my 20’s the world raised me up and brought me crashing down, often on the same day and I spent a lot of time trying to figure out the true meaning of everything, wondering what the underlying tone was when someone said or did anything only later figuring out that sometimes people just did or said stuff and there was nothing more to it even though I wanted there to be.  In my 20’s I was emotional.  I made myself feel everything and I mean everything, from sponsoring children in underprivileged countries, to the plight of dolphins caught in tuna nets and really getting into everything earth friendly, to listening to anyone’s sob story to worrying about my family….sigh…I went in 120%!  That was all well and good but it was a little exhausting for those closest to me because back then my emotions were pinned right on my sleeve where everyone was able to bump into and bruise them and have them spill onto everyone and everything like hot lava. I was always ready to argue or get to the bottom of everything right away because that was my agenda and I’m pretty sure even though they loved me, I had moments when my parents and sister considered me quite off putting.  Can’t say I blame them.

By the time I was 26, I sorted myself out and started being more comfortable in my own skin.  I had lived on my own for quite some time, paid my rent, my bills, took care of myself and had my job at the bank in addition to several freelance television jobs that kept me busy.  At 27 I felt that Tom and I were in a good place in our relationship and we moved in together until work took him out of Toronto for the beginning of what were the coolest years of our lives.  I made the decision to join him and leave my family behind, living for 2 to 5 years at a time in different locations around the country.  There was eventually a wedding, new jobs, followed by a baby born in the east of the country and another born in the west and adult life in the blink of an eye was in full force.

I have lived a whole lot of life that seemed to snowball right to the eve of my 50th birthday.  Having a special needs child, I have not always enjoyed a “normal” motherhood and if you are going to say “what is normal anyway”, stop right there, because normal is a life raising kids where you don’t have to have a plan A, B and C to go for a walk or for every single trip to the grocery store, or to school. Normal is booking a vacation and not having to tell everyone involved with your trip from the travel agent to the airline, to the hotel to the restaurant that you need to make special arrangements so that maybe you could have a relaxing and enjoyable vacation.  While it is better now because we put in the work, time and love, we have never been able to just get in the car and go – ever.  But even with all the trials of having Adam, I would not trade any of it because this has been and still is our journey and mothering these boys has been my purpose in life. It has made me and the life I lead, worthwhile.  I remember always struggling to figure out what I was meant to do with my life; why was I born?  My moment of clarity came New Year’s Eve, 2000 when I woke up from napping n the couch in our apartment in Montreal .  I nodded off while I was waiting on the ball to drop in Times Square while watching Dick Clark’s Rockin Eve, and I glanced over to where Tom was sitting at the computer and saw Adam’s playpen and could hear the occasional static of the baby monitor and I said to myself …”Oh yeah.  Right. I’m married with a child”.  I remember thinking life was really perfect. Too perfect and I had a feeling the other shoe was going to drop but I didn’t know how big the bomb was going to be until Adam started showing signs of autism and I realized what had been looming.

In your 30’s you start to settle into life .  You are used to working and you know how to live out your role as a member of society, an adult, a spouse, a worker and a parent.  Like most parents you look at the state of the world and you just want the best for your child and you focus on giving them a life even better than yours.  You set the example, you guide, you encourage and love and from time to time you are just scared shitless of screwing up their lives and even though it is perfectly normal to screw things up from time to time, we are hard on ourselves when we do. Most parents want to create opportunities for their kids to succeed and somehow hope to perfectly balance that with protecting them while trying not to overly shelter or smother them.  Add to that the responsibility of moving ahead in your career, always competing with yourself and others for a better salary so you can give your family a comfortable life and hopefully give yourself some kind of retirement.  Yes, your 30’s is a different kind of struggle and in our family, we were soaked by a big bucket of autism.

We became a family living with autism in 2002 and we always will be.  There have been and still are so many difficult times but I have to say there have been many more glorious times and I could not be more proud to be Adam and Logan’s mother and Tom’s wife. Throughout the years I have met many fabulously kind and generous people and very talented and unique people via my firstborn son and even more through our charity Adam’s Hope. When Adam was diagnosed, I was called to sacrifice work many times to be a wife and mother in an era when it is more acceptable to have a career than be at home raising your children, being a wife and running a household on one income.  While juggling the proverbial balls of my life, there were days when I juggled them perfectly catching them all, and other days when things would go hopelessly wrong, I would lose my grip and drop them, only able to watch them roll far away from me. You see, with autism, your bad days are the ones spent trying desperately to reach a child who may or may not connect with you when you desperately need him to so that you can do other things you can no longer ignore.  A child with autism was just one of the balls of life I found myself juggling, only when it slipped out of my hand, sometimes there was no catching it and it took the other balls (paying the bills, preparing meals, changing the soiled diaper of the screaming baby etc) tumbling down with it.  It was draining but I have had to (and to an extent still do) try and figure out what my son needed or wanted and then of course I have had to advocate for my son, and have been his voice most of his life while making an effort every day to give Logan the regular life he deserves. This was not how I imagined my life would be with constant re-adjustment and scheduling and modifications and therapy for Adam but there are days when I can honestly say I am happy I did not miss out on all it has given to me.

By the time I was done decorating our home for the holidays, my mind drifted to my 40’s.  While still quite consumed with family, work and autism, it was in my 40’s that I truly appreciated life and all that Tom and I had done and accomplished as a couple and parents and in our past and present careers. In my 40’s I could see that this marriage and this life we created for the 4 of us had the mettle to withstand the test of time.  I had learned and was continuing to learn so much more.  My outlook on life was based on a wisdom I had heard my mother and her friends speak of and I was truly grateful that I was getting older. I have never had a desire to re-live my 20’s and certainly do not miss raising babies and little children like I did in my 30’s.  My 40’s allowed me to confirm to myself that I am bat shit crazy about Daniella. I love her dearly and I am proud of her.  I have survived the grief and pain of my child’s diagnosis and I have watched both my children accomplish far more than I have ever anticipated.  Together, Tom and I have overcome many difficult times that were exacerbated by the fact we were trying to raise a child we were barely able to understand and trying not to deprive Logan of the attention he needed and deserved.  The effort we have put into raising them, the attention, love, care and independence we have given them and expectations we have placed upon them have helped them become young men of whom we are tremendously proud.  I have sacrificed my career path to raise them and I have done all that I was supposed to do to get them to this point in their lives and now, while still here for them, I get to do what I want to do and it feels great.

In my 40’s we moved our family across this country for the last time to a place I do not love but I can tolerate because I am able to leave it often and get to cities east and west of here, many times in under 2 hours.  We moved here primarily because my husband’s parents are ailing and he needs and wants to be here for them.  It is a place quiet enough to raise a family without the hectic nature of a bigger city.  It is one where I have made many acquaintances and at one point, even called some people friend, quickly learning that even in your 40’s friendship does not have the same meaning for everyone and the best thing to do is to remove those people from your life and find friendship in the places and things you know best.  In my case, it was keeping connected with my friends in the many cities and provinces in which I have lived and the group of women I was able to reconnect with thanks to a life changing 30th high school reunion and the click of mouse that bridges the distance between us.  I stood beside these women when we were just girls and being able to chat with them and keep up with their lives is a blessing and I am honoured and proud to refer to them not just as friends but as sisters. Knowing they are just a car ride or a click away has kept me in tune with my roots, what really matters in my life and who I truly am.  Having this reinforcement from them has allowed me to seek and make smarter connections with people close by who are intelligent, kind and interesting human beings with whom time is well spent.

One of the most difficult times in my 40’s was the year we lost our father.  His death allowed me to take stock of my life, get over my arrogant assumption of longevity and realize just how little time there is to spend with the ones we love and doing the things that really matter to us.  In my 40’s I began to take ownership of my actions and remove many of the things I would do for others (albeit worthwhile and necessary at the time)  from my life.  I considered how pressed for time we always were and I started to eliminate the things that consumed way too much of it. I passed on the operation of my charity to three younger and fresher mothers and cut back on volunteering my time for many things.  I realized that people often forget that we have Adam and that he needs extra guidance.  I think people forget that we can’t just commit to things the way others can because we often have to plan every minute of our day just to keep things running on even keel in our home. We should be the last people anyone asks for help yet we have stepped up and done our fair share of giving of our limited free time.  We have done a lot for charity, spending precious days when we could have been with our boys with other people and now we are done.  Now that they are teens my husband and I are are looking forward to creating new memories with our sons and spending time with dear friends and family.  I want to plan escapes where I can enjoy the performing arts and sporting events and culture with my family and go away on family vacations once a year instead of every two or three years now that we know for certain Adam can handle long periods away from the routine of school and home. With regards to work, I am will continue to mold our business into the well oiled machine it is shaping up to be and will work side by side with my husband to make it successful and unmistakably ours.

I am thrilled my 40’s allowed me to really dig in and be okay with who I am and excited about who I am going to be.  Known to be outspoken since childhood, I have learned over the years when and with whom I should share my opinion, generally doing so only with people worth the time.  I have learned over the years when to persist and when to cut and run and I have truly digested the importance of self preservation. I know who I like and whom I can live without.  I know who and what to take seriously and who and what I can ignore.  Loving oneself, protecting oneself, making one’s happiness a priority and being kind to oneself key to having success in all areas of one’s life as well as learning to accept the long hard times and the times when we fail.  In my 40’s I also learned to own my health and my faith by often connecting the two.  No longer a gym member or at mass every Sunday, I enjoy yoga, my ballet and contemporary classes and working out at home because it is in those times I am able to still my mind and speak to the Divine and truly connect and pray.  I have found that while I still enjoy the beauty and ritual of the Mass my connection with God is strongest when I am taking control of my physical and spiritual health …and it’s peaceful, simple, easy and, well … nice.

Throughout the different phases of my life I have had unfulfilled wishes and regrets and for the most part those are on me but I am thankful for them because it is from our mistakes we learn to do things better for ourselves and for others.  Throughout my life, I have done what I was supposed to do and now as I approach a new phase of my life, I am going to do what I want to do.  By the time I had my house decorated for Christmas and was admiring it from the couch while sipping my tea, it dawned on me that there really is nothing to figure out about turning 50, nor is there anything mind-blowing about it.  I know that now, because it seems I already have it all together and there is no need to spend precious time trying to figure out how to live life.  I have worked on my marriage, my family life, my career.  I have compromised and sacrificed, taught and guided. I have worked through the obstacles, have won and have lost. I know there is so much more good and bad still to come but I am armed with a great deal of life experience and no fear.  I know what I like and what I want and I don’t compromise those things anymore.  From the moment we are born, life happens and all we can do is the best we can with what we have been handed.  Until I die, I will always have to roll with the punches and I suppose the one thing getting older really changes is how we choose to roll.  I hope the people dear to me will have long and happy lives and I hope for the same for myself, my children and Tom, the love of my life.  I hope to see many places and experience many things that will fill my soul with joy and I hope to see my children grow into adults and watch them chase their dreams, achieve them and soar.  Life is hard and it can be ugly, painful and even cruel but somehow these are the ingredients so crucial for what makes life fantastic and joyful for out of the darkest nights, dawn the brightest days and we should be mindful to taste the bitterness of the bad so we can learn to appreciate the sweetness of the good … life is too short to do otherwise.

 

 

To all my SJC sisters and friends who have turned and are about to turn 50, I thank God for you and for being so blessed to have you in my life.  Your friendship crosses land and sea and I am so happy we were able to find each other again and happier still to be able to get together and celebrate with a few of you.  I wish you good health and all the sweetness life has to offer. I hope we stay connected for years to come and are able to have many more opportunities to gather together . I love you all, my 50 year old friends.  Cheers to a new phase of our lives. ~ Danie.

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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.

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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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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.