parenting

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Raising Boys in a #metoo Moment in Time

*This commentary is my personal opinion on my blog that I have chosen to express after conversations with my son and some of his peers. I believe in men and women being respectful to one another and I know this is possible between the sexes. I was prompted to write this because I am worried that many innocent men (including my boys) are open to having their lives ruined by wrongful and perhaps malicious accusations. You are also entitled to your opinion but obscene remarks will not be tolerated and will be reported.

 

Speak to a teenager about the things that go on in their world and you are propelled to places and things you never knew could exist. In the Caribbean when a teenager was a fast mover people would say.”Yes she self she so hot up. she and he go get theyself in trouble, oui!” or “Who he? He too mannish for his age! Cyah tell him nothing!” But it’s not just the world that pertains to teenagers that stuns me, it is all of it.

Oh, my goodness the times in which we live in are head shaking times.There is much to be proud of and fascinated by as there is to be disturbed about and I worry for my children. I worry because their father and I put so much into raising them to be good, kind, respectful, young men and though I know they are moving along the right path ( they are not perfect by any means), there is nothing that will protect them from things that my grandparents would have ever imagined happening in the world. From drugs to child pornography, to sexual, verbal and physical abuse, drinking and driving, being high and driving, to the possibility of being shot or stabbed at school, bullying, suicide, bullying due to sexual orientation, having no help and no hope, self harm, low self esteem, cutting, eating too much, eating too little, eating detergent pods, cyber crimes, terrorism… the worrisome list is far too long yet there was just enough room to squeeze in one more concern to me, which is my boys’ exposure to women in this world who will have no problem lying and hiding behind #metoo in order to hurt, shame and ruin them. Should this happen to them, even if they are proven to be innocent of false accusations, their good reputations will be tarnished and the damage could very well be irreparable and they would have to literally live life in the shadows.

We get a lot of compliments on our sons and how respectful and well-mannered they are. My boys are the ones who hold the door open for everyone. They will re-introduce opening a car door for a lady before getting into the car themselves.  They know how to dress appropriately and they stand when a woman arrives at or leaves a table and they take their grandmother by the arm to make sure she is sure-footed as she walks. In spite of all this, they are still wide open to malicious accusations of women who boldly and happily taint the whole premise of a movement that is significant to women as well as men worldwide – a movement that gave victimized women a voice and finally put inappropriate, twisted men in the eye of the law and behind bars for their despicable deeds. But these days there seems to be a witch hunt on ALL men and as a mother raising boys in the midst of a #metoo movement, I am frightened that anything they may say or do can be held against them and their good character.

I talk my head off. I talk every day, guiding, advising, teaching right from wrong. I have never talked more because I have teen sons and i have a limited amount of time to instill in them as much dignity, etiquette, accountability, respect, pride, self-worth and self-respect as I can. Their father and I parent them at lease 95% of the day and as exhausting as it is and as much as we would love to stop talking, it is our responsibility to them, to our family, our community, country and the world to raise them right. So for all you mothers of daughters who aren’t really paying close attention to what they are doing because you have to work, or you have problems or whatever your reason is for being unaware of their behavior and their whereabouts, I want to suggest you raise your daughters similarly to the way my mother raised me – you know the old school way all our mothers raised us before the smart phones.

It may be considered old-fashioned but not everything that is old is useless. I was raised to be strong, to have confidence in myself, to face my fears and learn from my mistakes. I was surrounded by love and I knew I was worth everything. My mother was instrumental in making be believe that I could do anything if I put my mind to it and while she never disallowed me to do something because I was a girl, she insisted I act like a lady.  Acting like a lady meant having respect for myself so that others would respect me and if they didn’t I was to say and do something about it because again, I was worth everything and I was loved. I was raised to know there was nothing I ever needed to hide from my parents and that led to me being comfortable enough and open enough to tell my mother (with whom I was quite close when I was a teenager) anything and very often it was her advice, her wise words that helped me get over many of the hurdles that accompany the roller coaster that was, is and always will be, teenage life.

My mother taught both me and my sister that we could be beautiful without feeling like we had to expose our bodies or try to come off as sexy all the time. Fortunately, I was never overly developed so pulling off sexy was really difficult for me and I actually felt sexiest (and still do) when I dressed for me – when I dressed to suit my mood and was comfortable with the way I looked and felt. I was never comfortable having the world see all of me all the time. My mother taught her daughters that less is more and that it was nice for people to see you without makeup and perfect hair from time to time because when the occasion did arise when we needed to dress up, our look would be different and refreshing. “Always surprise people,” she would say. “Never let them see you always dressed to the hilt. Let them see the different sides to you – the different moods and different styles. Never work hard to look perfect every day because if you are just yourself, your true inner beauty will shine through. She also told us to never to do anything to a boy that we would not want done to us. Never lead a person on if you are not interested in them beyond friendship and learn to take rejection. She would say, “Not everyone will be attracted to you and no one has to be your boyfriend because you want him to,” And one of the most important thing my mother gave to me and my sister is the ability to be alone. Being alone does not mean lonely, unwanted or unloved. It simply means that it is possible to be comfortable enough in one’s own skin to be single. Never rush into a relationship just to be in a relationship. Better to have no person in your life than the wrong person.

I have no idea what is being said to some of our young women today, but it isn’t right to slap a young man on his bottom and comment on said bottom, knowing that he can’t (or better not) say or do anything back to you. I know it has been said that a woman should be able to wear what she wants and no one has the right to look at her, or touch her or interpret her outfit as an invitation for sex, but if you squirm your way into too tight shorts that look more like panties than shorts, isn’t is true that you were aware of how it would look or feel. By choosing an outfit such as this aren’t you absolutely intending to reveal yourself so that others may look at you? Let me give you the answer – yes…yes you are. I was not a perfect teenager and of course I did things here and there for people to notice me but for the most part, I did not sell my butt cheeks on a daily basis. Now, I know you might be thinking, “well, you are a Trini and you have played Carnival just like everyone else, so how you could be a hypocrite so?” I have a response for that too. I played Minshall mas twice, (so you know I was clothed) and the other three times I played bikini mas with Harts and with a band that was called Poison. Trinidad’s and Brazil’s Carnival have been skin shows for many years now. My young cousins (20 somethings) play mas and they pay plenty money for their pretty but yes, brief costumes. Even so, they trend to the more clothed end of the bikini spectrum and they don’t behave like “Jamettes”*.  Mind you, no woman (or man) wearing anything revealing or tight has a right to be inappropriately touched or harassed. Absolutely not.  There is a time and place for carnival (Carnival costumes aren’t going to get any bigger anytime soon), there is nothing wrong with wearing your bathing suit on the beach or at a pool. It is perfectly normal to do something or wear something that makes you feel sexy and all women should embrace their bodies proudly. What I am talking about is my son and his friends seeing girls underwear everyday under too short kilts and because they change in the hallway and not in the ladies room. I am talking about groups of 8 to 10 girls hovering about boys at certain parties not moving until they all kiss all of them. I am talking about girls as young as grade 5 and 6 wearing the equivalent of volleyball shorts to school in the summer and painted on leggings in the winter while boys get in trouble for wearing muscle shirts. If they are not allowed to wear muscle shirts to school (and I wholeheartedly agree) then why do the schools turn a blind eye to the girls’ attire. I suppose if the teachers say anything they could be accused of looking at the girls or judging them and who wants to open any of the many can’s of worms surrounding our children based on political correctness. Good God, how frightening it must be to be a teacher, especially a male teacher these days.

I have cousins and friends with daughters who are lovely and I am not just talking about their face or their bodies. They are lovely because they are polite, they know that looking sexy is not for church, or school or the grocery store and they have boyfriends and friends who are boys who they respect and who respect them in return. They have no problem chatting with adults and they are mannerly and polite and they have a sense of humour and a sense of responsibility. I find these young ladies rare and refreshing and I hope when the time comes, my boys choose partners who have these qualities. My point is, it’s a two-way street. Let’s teach our boys to be gentlemen. Let’s encourage them to be multi-dimensional with many interests. Let’s teach our girls the same. Let’s teach our girls not to abuse #metoo. Teach them to not belittle what it stands for. #metoo is a very important message and if it is abused or tainted in any way, it will fade and what we (men and women) have worked so hard to bring to the light will be swept away into the darkness.

My friend’s 13-year-old son already knows a guy in his school who got into an argument with a girl who circulated revealing photos of herself and because he told her she was behaving like porn star, he got suspended and nothing was done about her or her risqué photos. That suspension will be on his school record forever all because a girl and her friends in spite of her behavior cried out harassment and #me too. My sons tell me they are not ready to date (I can’t say that I blame them). My one boy with autism, likes being around friends but so far has shown no interest in having a girlfriend. It is clear he likes girls and he has had a girl he was close friends with but we have drilled the privacy and hands to himself speeches into his head and so far so good. My other son is wary of dating because he is concerned that if he gets involved with the wrong girl, she can say or do anything to call out harassment and he could be in huge trouble. He’s chosen to be hyper focused on school because he is hyper focused on his sport and good grades are pre-requisites for continuing to play on his team. They also are both keen about making money to buy the stuff they want so they are also focused on their part-time jobs. I do hope if they choose to date, they end up with intelligent, funny, self-respecting and respectful girls who have big dreams and drive because my boys deserve good people because they are good people and anyone who ends up with them will be getting the kind of person the world desperately needs.

I promise as a mother of boys to do my best to raise them to treat your daughters with kindness and respect and will hold them to being decent and gentlemanly around your daughters so please if you haven’t already done so, mothers of girls, please discourage them from using the movements that strive to protect us as cheap weapons against good boys.

 

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One Year to Fifty: Dealing with Disappointment Using Love, Doors and Trini Sayings.

One thing I cherish about growing up in Trinidad and Tobago is how much we rely on proverbs or our  sayings.  Some only we Trinbagonians understand, like “Monkey know what tree to climb“and “Cockroach have no right in fowl party” and others are plain and simple to everyone.  I love how we lean so heavily on sayings to pass on sage advice.  One saying my mother uses often is “One door close; ‘nother one open”.  This is the theme of my life (and the lives of all we Barsotti’s coming to think of it) and the lives in the players of this family of 4, Tom and I created.  I see it all the time, in our jobs, in opportunities, in the kid’s school life, their sporting life and in our relationships with people.  Sometimes, it is hard to see so many doors closing for us when we look around at all the easy avenues others are able to take but it is in times of disappointment I am able to reflect on all of it; every single thing we have gone through and I feel a warm and uplifting sense of satisfaction and accomplishment because in this family of four we have walked through many doors, tripped and fallen down the stairs and climbed back up again, albeit with a little limp now and again and the best part is. through a strong binding love, we walk through a wider door that leads to new possibilities, things that are more suitable and beneficial to us.

 

sigh

You can’t worry about what you didn’t get. You can only hope to be ready for what is to come. This is a hard and harsh world.  It is filled with beautiful places, people and things that dangle before us and we reach out time and again, arms open wide, fingers outstretched hoping to touch what we want just a little, because if we do, just maybe we can grab onto it and have what we want to make us feel good. But sometimes, what we want so badly slips through our fingers and is once more just ever so slightly out of our reach.  We are hurt and we become sad, disappointed, angry and sometimes bitter and jaded.  What we must always be aware of is what we do with the pain of disappointment.  We can allow it to fester and consume us and eventually have it cut us down and destroy us or we can remember the powerful sting of that pain and use it to fuel us to pick ourselves up and persist.  When we get up, and get out of bed and realize we are upright and breathing, we’ve already won another chance at life.  Each morning you are alive and well is another step closer to achieving anything. Being alive gives us another opportunity to do good, pursue a dream and make a difference in the life of someone else.

I belong to a unique and unofficial club of people.  If anyone should be on Valium and booze to get through a day, it should be the parents of children with special needs.  Sweet Jesus, wanna talk about closed doors?  We live in a world of doors slamming shut every single week and instead of a drink, most of us choose to take a minute to breathe before going to the drawing board and starting again because we have to – for our children, our families, for ourselves. There is no time to wallow in self pity or dwell in disappointment. There is only time for thinking, analyzing, re-starting, doing things differently and re-directing because if we don’t, everything and everyone in the family will come to a halt and most certainly will crumble. This is why I have very little patience for bull shit.  I often see it a mile away and I am prepared for it most of the time and I am trying to teach my sons how to do the same.  I have even less patience for people who shield themselves and their families from disappointment  because when those people have the shit hit the fan, they throw their arms in the air and look to more prepared and realistic folk to help them out. They will talk to anyone who will listen as their mole hill becomes an epic tail of the most treacherous and difficult mountain ever climbed.  Call me cynical, but over the years I have had more people come to me for help for the most trivial of things, never mind I was trying to keep my sanity while I raised an autistic child and tried to raise another child in an environment that was not solely about his brother’s condition.  I find these people to be selfish,weak, attention seekers.  I don’t mind giving advice or listening to someone, (after all, I have had people do the same for me) but don’t like when people waste my time with nonsense they absolutely can sort through and rectify with a little effort.

We live in a time where some of us who are parents try to shield our children from disappointment at all costs.  Creating a perfect world for children and spoiling them beyond belief are two gigantic steps towards their world shattering into millions of pieces the first time they feel the sting of disappointment. Today, so few young people know what to do with themselves when they do not get what they want because they feel they deserve everything.  Parents today want to be so unlike their own parents, they remove hard work, effort and accountability from their children’s lives and so we have created a couple generations who have a remarkable and detrimental sense of entitlement. No one deserves anything until they have earned it.  The fulfillment of hard work as is purer and greater than the temporary satisfaction of buying your way through life or having things handed to you only to mishandle them and eventually lose them.  Nothing can take the place of achievement through effort and so many young people are missing out on such bliss.  Instead, for our youth, their world ends about 80 times a day, much like that of a toddler, and when it does their parents do whatever it takes to make it better.

The way the parents in my extended family have chosen to parent our children through the disappointment they sometimes face is simple and perhaps may seem archaic to some.  When they get hurt, we embrace them and comfort them with our words (the proverbial band aid if you will).  We listen, we explain what we can and what we cannot, we chalk up to being out of anyone’s control, bad luck and well…the roller coaster that is life.  Once the pain settles in, we observe them day to day and once some time has passed we check in and find out how they are doing.  We find out what they have decided to do with it the pain and then once their confidence seems boosted we rip off the band aid by not feeling sorry for them and telling them to get to their feet and walk towards a new door.

doors

They may not find the new door right away, but with one year to fifty, in my experience, IT WILL BE REVEALED and when it is, they are encouraged to kick that door open and bravely walk through. People need to realize that nothing that is easily given to you will ever be as fulfilling as the the thing you worked hard to achieve.  Nothing can compare to the spoils of grinding it out and leaving all of yourself out there.  I think there is a satisfying sweetness when you discover for yourself how great you really are at something and on the contrary there is something unsettling and icky about having your life handed to you gift wrapped with a big red bow because when the bow is untied, everything it kept together comes apart and shatters to the ground.  If you are not used to picking up the pieces and putting them together again, then you just end up disappointing yourself.

While another saying I use to help me deal with disappointment is, “This too shall pass”  my husband prefers using “The best is yet to come.”  A natural optimist, I know in his darkest moments he is always able to pull positivity out of any situation and he moves forward, every time.  He’s better than I am because while I too have the ability to move forward, I tend to pull out bitterness and anger as side dishes to my positivity (it’s quite convoluted and I’m working on remedying that  – lol).   From time to time, I read the words Tom said to me when we renewed our vows on our 10th wedding anniversary. They are words of truth and strength and of course love.  They are words that came about because of the unexpected adversity that hit us with Adam’s diagnosis and words that remind me that with love there is strength and courage and there is nothing we cannot overcome especially when faced with the pain of disappointment.

“This is an incredible ride we’ve been on.  Ups, downs, fast, slow and even derailing once or twice.  But I believe a ride isn’t worth it if you know what’s coming. The only way to truly enjoy a ride is to NOT know what is coming and to be able to ride it out when it becomes chaotic and random.  I promise I will love and raise our children to drive us crazy as they push every boundary they can and that I will raise them with the intention that nothing will hold them back, and if anything tries to hold them back they must fight it relentlessly.”

Tom said many things in his vows that night and they were beautiful and strong and just … solid and believable. He promised us that in spite of all the hard times we have had and are still to have, our lives would be based on integrity and hard work, failure and success and never would we be able to say our journey was boring.  With one year to fifty, I can safely say we have had bad times but the best times were the moments after things went awry; moments when we took the time to do nothing but breathe and the moments when we regrouped and started over.ahhh

So to my children who may read this at some time, I say this as the Trini mother that I am (dialect and all) :-

My dear sons, Adam and Logan, remember, “Laugh and cry does live in the same house” (what you love can also bring you pain) but you are both resilient and “all crab does find they hole,” (everyone find’s their way and their passion along life’s journey) remember “goat doh make sheep” (you are our children through and through) and just like us, you have what it takes to draw from your experiences and right yourselves. Embrace life all of it, the bitter and the sweet and you will be fulfilled by the things that were the hardest to come by.  I promise you. ~ Love you forever, my kind, generous, strong and fearless sons ~ Mom.

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Two Years to Fifty – Boys to Men – To Logan …So, About those Heroes…

In the summer, man-child number 2, the sports fan, heard some startling news about his favourite hockey player. At first, he didn’t believe his idol would do what he was accused of doing.

“She’s a puck bunny, Mom.  She’s looking to get his money, that’s all,”

Ohhh-Kayyyy.  Time to have the conversation. And by the way, guilty or not, thanks Patrick Kane. You need to learn son, that people, especially younger players are watching and you need to conduct yourself with some dignity and class so you don’t get yourself into these pickles.

You can’t hide much from your children these days.  Information is everywhere and you have to be prepared to address all kinds of questions and word brutal honesty in a way they can understand, simply and tastefully.  The truth was not easy for Logan to accept because in his mind such great talent on the ice meant greatness in every aspect of the idol’s life and it took me and his father days to explain to him that talent does not dictate character.

During one of our talks about the importance of everyone’s behavior and responsibility to be respectful (especially those in the spotlight) he looked at me and asked,

“Who are the heroes Mom?”

A valid question asked with a mix of disappointment, weariness and not as much hope as I would have liked.  So I began by having him look up the definition of hero – a person, who is admired or idealized for courage, outstanding achievements, or noble qualities.  So instantly and quite proudly he started name dropping the usuals –  Mother Teresa, Anne Frank, Mandela, Ghandi, Martin Luther King Jr. which made me quite proud but I needed to make this lesson more real for him; more identifiable with his interests and I wanted to challenge his thinking in a different way.  I decided to go the sports route and gave him the names of athletes who are regarded by some as solid role models.    So Logan, if you read this, perhaps it will help find the answer to your question.  Lets start with your beloved hockey and Jonathon Toews.

Jonathon Toews is a young man who is regarded by fellow NHL-ers and people in his community as a stand up, polite and respectful young man on and off the ice.  The Winnipeg native has captained the Chicago Blackhawks since he was 20. A calm and composed demeanour gave rise to the nickname “Captain Serious” by his teammates. His hard work and talent earned him and his team two Stanley Cups and he also has won back-to-back Olympic gold medals with team Canada.  He is an ambassador for the Canadian Tire Jumpstart Program, a charity that funds sport participation for underprivileged kids and he supports Misencordia – a group home for youth with special needs in Winnipeg,  the Winnipeg Nourishing Potential Program feeding kids facing hunger and has supported the Make a Wish Foundation.  His actions off the ice have resulted in this 27 year old being awarded the Order of Manitoba.

Rickie Fowler is another young athlete who is a great role model for youngsters. The beautiful thing about this young guy isn’t just his face.  He is his own person and has, with the help of his family been able to shake off the haters and senseless criticism and  has kept marching along in his colourful golf attire to the beat of his own drum. He is a book, misjudged by the cover.  He is young, good looking, earns a decent paycheck and a lot of it comes from endorsements and as such there is a lot of fodder there for jealous haters. As flashy as he looks, this youngster does not drink and does not swear. He likes his cars and his dirt bikes and likes to have fun but he isn’t a party animal. He is proud of his faith and family and is known to be one of the nicest and most respectful players on the PGA tour. He gives as much as he receives and started the Rickie Fowler Foundation that supports (his heritage) Asian American and Native American youth in need and he is involved in the First Tee  – a youth golf development organization.  My favourite Rickie situation this summer was watching him come from behind to win the The Players Championship 2015, coming down the stretch carding birdie, eagle, birdie, birdie ultimately winning a 3 man playoff against Sergio Garcia and Kevin Kisner with a (-12) twelve under par.  But it wasn’t the score that impressed me.  It was the quiet victory shutting up the criticism of his peers in a Sports Illustrated Poll that regarded him as the most over-rated golfer on tour.  When asked his thoughts on their opinion of him, where he had every right to vent his feelings, he simply smiled that gorgeous smile and said,

“Well, (firmly gripping his trophy) this seems like a significant enough win,”

If I wasn’t already a fan, that comment would sealed the deal for me.  He let the golf speak for itself and in an era of  trash talkers, this young man chose to take the high road, with grace, dignity, the prize money in his pocket and the trophy in his hands and it was more effective and classier than retaliating with harsh words or gloating. Gotta admire the guy.

LeBron James is sort of like the King of the NBA. He is a four-time MVP and two-time NBA Champion who has simply dominated the league since he joined it, and  is without a doubt the league’s best player today.  He is also a great human being off the court.  He has an active role in the Boys & Girls Club, ONEXONE, and the Children’s Defense Fund. as well as having his own charity – the LeBron James Family Foundation, which raises money for numerous causes in his native Akron.  Humble and charismatic, he is also described as fan friendly and loyal.  LeBron makes time for signing autographs and taking pictures and interacting with the fans whom he holds close to his heart.  He is loyal to the community he grew up in, purchasing new uniforms for his alma mater high school’s football team and even showed up at their pep rally. Once in Oklahoma, the team’s plane was fueling up alongside a bunch of helicopters transporting military personnel.  The soldiers wanted photos and autographs.  While security said no to the soldiers, LeBron gathered the team together and went to the soldiers and took as many photos and signed autographs for as long as the vehicles were being fuelled, making the soldiers very happy.  LeBron James, of course has the incredible work ethic needed to be a great athlete and a great ambassador for his sport. He trains and practices long hours in order to be the best at what he does and puts his time in as Vice President of the National Basketball Players Association.  Since his involvement, James has begun taking a bigger role in the direction of the league and how players conduct themselves, setting the example by his own behavior on and off the court with a heavy emphasis on sportsmanship, constantly complimenting fellow NBA players in person and over social media, as well as expressing his support when guys get injured or are unable to play.  Watching him stay out of trouble and handle public scrutiny with dignity and class is a pleasure and is what makes him an ideal role model for young people.
I could go on about other athletes who are positive role models but the greatest example I could give you, son, just requires you to look in the mirror.   In your reflection you will find reflections of your father, your brother and grandfathers and uncles and cousins and grand mothers and aunts and hopefully a little bit of me in there.  You see, my boy, you are a good person.  A really good person – even on the days you drive me mad.  You have learned (and are still learning) the lessons we teach and we admire how you try to apply them to your everyday life. You are accepting of others and are kind even when others are not kind to you.  You don’t intentionally try to hurt anyone’s feelings and if you do, you apologize.  I have never seen you make anyone uncomfortable in our home and I really admire how respectful and polite you are.  You work hard at the things you are passionate about and you are very open to new things.  One of your most endearing qualities is your generosity. One of my favourite memories with you was in church one day when you decided you were going to contribute to the collection plate with your own money. You pulled out a $5.00 bill (that I knew you intended to spend on ice cream) and said,
“You know, I could enjoy the ice cream, but this money could make someone happier and change something for them. I’d rather give them a nice day,”
Child of mine, you truly uplift my soul. You add so much joy to our family and are so amazing with Adam, jumping in and spending time with him and helping us out without being asked many times.  I believe you are the kindest person I know, next to your father, that’s why when some idiots go beyond casual ribbing and poking fun at you, my blood boils a little.  I know you struggle with that at times and I know you don’t understand why some kids think its cool to try and make others uncomfortable. There are days I wish you had my loose cannon temper so that you could go nuts on them, (hence why I am just a sliver in what makes you a hero, lol) but you are your father’s son and he has several admirable qualities I fell in love with right away and so of course you are like him and I know, no matter what you face, you will choose the high road. (Just don’t forget to continue to stand up for yourself, even if you don’t think you want to …never let people walk all over you.  You are far too good a person for that and you always deserve respect.  Always.  So … demand it.)
So, man-child #2 here is the conclusion.  A hero is a person who is mindful of others.  A hero does right by other people and gives of himself and though you might find you do good things and the gratitude does not come, do not let it sour who you are, because who you are is beautiful and heroic and your character far outweighs those of men much older than you.  You are my hero, Dad’s hero and most importantly, Adams hero.  Life will dish out it’s fair share of crap but I feel if you remember who you are and where you come from and be true to yourself, you will find happiness and satisfaction.  I believe in you.  I always have and I pray that nothing or no one changes you.  I wish you the most adventurous life journey.  I hope you get to see and do great things and while you do, just be you because everyone you encounter along the way will be lucky to have met you.  Who are the heroes?   They are the people who see good in the darkest of situations, the people who give without expecting anything in return and the people who are happy for whatever they have and not preoccupied by what they do not have or just can’t seem to get.  Keep being our hero my boy by staying as sweet as you are.  You are a blessing and I am so grateful you came to us.  Love you forever,
Mom.