Turn Off Your Damned Device and Get Some Sleep!

My husband and I were getting ready for work the other day and we were tuned in to a morning news/talk show. As usual there were various segments, a cooking segment, a travel segment, an interview with a Canadian author, an interview with a financial person, a political pundit was on and then there was a woman with a sleep pack who was insisting that this is a must have in today’s world because we are kept awake by the blue light from our electronic devices. We paused the TV and scooted back to the fluffier segments and we noticed a pattern. People love to be told what to do. We love to be led on by gimmicks and we have no problem literally buying into this mumbo jumbo and lining the pockets of these gurus looking to capitalize on their 15 minutes of fame.

In one morning, viewers were shown the fastest, most nutritious and most colourful and friendly March Break foods that “busy moms” can prepare for their children. We were shown various coloured mason jars (available at the dollar store or is you wanted something fancier you could look for them at Michaels’s or Bed Bath and Beyond (oh,yes) where we could put our latte money and splurge at the end of the week as a reward to ourselves for not blowing our money on frivolous things. (Yeah I know, eh?) We were shown the most mentally stimulating toys for kids (all electronic, mind you with that evil sleep stealing blue light) and my all time favourite that day, the essential sleep pack.

Before I get into my analysis of the ridiculous, let me give kudos to anyone able to rip us off by tricking us into thinking and believing their products are so vital to our well-being. If the trendy, frivolous gullible can fatten your bank account, then so be it. People, please, why do we think that we need to buy a sleep pack that has 8 parts to it? There were specially tinted shades for the blue light, a lavender oil that you can put into the mist generator so that the steam will give off a soothing scent sure to lull you to sleep.There was a mask/blindfold thing to put over your eyes and headphones that plugged into the sleep sounds audio machine along with a two tubed rubber thing to stick up your nostrils to allow easy air flow to prevent snoring, and oh yes, it came with a cooling gel pillow. So for just $380.00 plus shipping, handling and taxes, you could buy your way to sleep. How about this for free? Turn off your device 45 minutes before you are ready for bed, shut your curtains and go to sleep. Remember reading a book with paper pages and going to sleep? I know some people have real sleep issues but for those of you who really don’t (and you know who you are) just be disciplined enough to not have caffeine before bed time, shut down your device and your day and get some rest.

 

 

And Moms, how is it that every new generation of mothers is so much busier than the one before? How is it with the invention of washing machines and dryers and stoves and microwaves and air fryers, food processors, blenders, juicers, Google Home, Amazon Alexa, slow cookers and one cookers, mothers have become busier than mothers who had to make food from scratch, wash by hand, wring clothes by hand and hang them to dry on a clothes line? How is it that with the vacuums and fancy Swiffer’s and robot vacuums we are busier than mothers throughout the generations that did not have devices like these to help them about the home? For Moms who work, how is it different from when mothers from past generations worked?  What are new Moms doing that eat up so much more time than generations past? I mean, how long is play group?

 

 

 

Why is it that we need a pack, a book or a guide to figure out how to make special, fun and colourful food for our kids? And why do we have to put so much effort into the presentation of their food to make it colourful and pretty so that they will eat it? Why not teach your kids to cook and prepare their own snacks safely and cleanly over March Break? It won’t take very long to teach them and they will develop a great skill and a sense of independence.

My point is simple. With such an advanced state of existence, with so many devices that help us do so much, why do we need to be told how to do the simplest things? Why is everything an issue, a hurdle or a problem? Make a variety of food for your kids and don’t freak out if they don’t like something. We all have things we like and dislike. In my house, all I ever asked was that my family taste something before deciding they didn’t like it. My boys eat pretty much everything.They have things they don’t like and that’s fine but I cook one meal for the family to share because I am not making something different for each of us. If you take the drama and the power away from food, kids will eat and if you set the example of eating good nutritious food, that’s what they’ll choose.  By the way, you new Moms out there, we are all busy. People are busy and dare I say there are people out there in the world who don’t have young kids who are busier than you. Parenthood doesn’t make you busier than anyone else. I raised a very energy consuming, time and emotionally consuming kid with autism and there were and still are many people busier than me. Get a grip, get organized and whatever you can’t do one day, do in another. We make our lives harder than it needs to be in a time when so many devices make it so easy. And for God’s sake if you are tired, shut off your device and get some damned sleep.

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.

 

 

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.

 

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

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

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

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

 

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

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

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

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

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

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

Man-Chi    

 

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

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

                

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

 

When Some Lives Are More Concentrated Than Others.

On November 6th , Logan opened his text book and froze when he saw her name written in her handwriting. She went to his school a few years before, took that class and wrote her name in that textbook. Just one week prior, we bade her farewell. The young woman who passed was Logan’s friend’s sister and she died way too soon and approximately 10 years after her older sister died of the same disease.  In his life, my 15 year old has been to three funerals and two visitations and this year death stunned him twice when two young people he knew, both of whom attended his school, passed away. At the start of the summer a young girl who went to his school passed away on a popular high school graduate trip. She was quite unwell with flu-like symptoms and whether due to dehydration or a combination of her symptoms, she stopped breathing, her heart stopped and she died. She died  when her adult life was on the eve of being born.

At 15, when someone young like you dies, it pauses life as you know it. To a young person, the death of a peer means a suddenly discontinued Snapchat streak, no more Instagram posts ever and tons of comments and likes the person will never see and though their social media accounts can still be seen by all, they hang there, inactive and heavy.  Images live on in social media but the lack of activity is a haunting reminder that they were deleted from life and it is unfair and shocking and hard for young people to understand. Young people are supposed to feel invincible.  They are supposed to have big dreams and plans and send snaps and post selfies on Instagram and have hissy fits about unimportant things. They are supposed to try and convince their parents to let them do stuff and go places. They are supposed to argue, slam a door in frustration, eat all the food in the house, always need a ride and when they finally get their license, always need to borrow your car. They are supposed to try and fail and achieve awesome things that make parents and teachers and coaches proud. They are supposed to find everything embarrassing. They are supposed to be awkward, be curious, push their boundaries, test our patience and become socially active. What they aren’t supposed to do is get terrible diseases and die. They aren’t supposed to go on a vacation and return in a casket.  Death should only be for the very old – but it isn’t and as a parent it pains me to see another parent lay their baby to rest.  I have no idea how one moves on from the death of a child and I hope I never have to deal with that. I have dealt with a lot in my life but I fear losing my children is beyond my strength.

The day after the funeral, I learned my school friend also put her baby to rest. She is a woman of great faith and she has weathered many storms. Her husband passed in their younger years, she found the strength to raise her kids on her own and if that was not enough, the disease took her baby boy as well. What is amazing to me is the strength and acceptance in these people who did the unimaginable.  From my friend’s posts, I felt a strong serenity within her. There was a feeling of gratitude for having been blessed with her son and to have been a part of his wonderful yet short life. From her posts I learned of the kind soul he was and that he had a wife and a son and another little angel on the way whom he would never meet. What I would ordinarily view as sadness I saw as blessings, gifts and hope because of my friend’s disposition regarding the situation.  So much loss was interpreted by her as an abundance of blessings for which she was extremely grateful.  Then I remembered watching the moments of the funeral I attended with Logan. I heard of all the wonderful things this young woman accomplished in 20 years. I remembered all the photos of her having fun, doing gymnastics, singing and she was laughing in ever single photo. I was so in awe of her boyfriend who played the guitar and sang about 4 hymns at her funeral and  then he sang the hymn after communion which was in essence a song about how much he loved her.  At just 20, this young man showed more character and strength than men twice his age and I was honoured to have the opportunity to witness him in his moment, albeit a moment of grief. The moment that grabbed hold of my heart and squeezed it was watching Logan’s friend’s dad carry his baby girl’s urn in his hands. Eyes red-rimmed, he still had that face – that pleasant, happy face, with that sweet grin. I saw his pain as he walked past the pew I was in, holding the small box that contained his baby’s ashes – holding it almost like he did the day he brought her home for the first time, I would imagine – he held her in his hands and he tried to make the lyrics to the recessional “Lord of the Dance”, escape his lips.

Young people, young parents and young spouses should never die. Dying should be for the very, very old.  Eyes should only shut forever when they have seen many, many, many years. Minds should shut down only after they have passed on wisdom to countless others. Hands should cease to create only after we have built sturdy kingdoms and only after we have molded and shaped the lives of many. Feet should cease to carry us and only after we have walked millions and millions of miles that justify our weariness and need for rest. We should all have long, eventful journeys but life isn’t always  generous. However, life is truly how we live it and what we do with out time. Life is directed by the choices we make in the situations presented to us. The journey can be eventful, rewarding and happy no matter how long it is.  I learned that at the funeral and I learned that by my friend’s disposition over her loss and I learned that in all that was said about the young lady who died just after her graduation. There was such a sense of peace within the families. Such acceptance and gratitude because they saw their children’s lives as a gift, a celebration and a blessing they were fortunate to be a part of. I still have a hard time wrapping my head around the loss of these young people and I can’t understand why one family had to go through this twice with both their girls but I did come away with something that helps me accept the harsh truth of death in lives so young.  The priest concluded tearfully but with a smile on his face that some lives are just more concentrated than others and it is when the young die, we realize this because the young live like they are invincible. The young approach life with energy and a sense of hope and fun. Young people live like there is no tomorrow and they are busy filling the hours in their days with things that are important to them. As we get older, sometimes that youthful thing that allows us to live like each day is our last, changes somehow and sometimes we waste our hours on the things that bring us no joy – things that dilute our lives. I think the young are on to something golden because there is much positive to be said about a concentrated life.

Logan was glad that he randomly got that textbook and not his friend because as he said, if it was hard for him to see her name, it may have been devastating for her brother.  I agreed with him to an extent but I also told him that her name written by her hand in that text book will be there forever and if indeed his brother does see it one day, it may sting a little from the pain of losing her but I also think it will make him smile and bring him peace, knowing that when you leave your mark on this world, no matter how small, you are present forever and you never truly die.

So while fully understanding and respecting the phrase, I choose not to say “rest in peace” to these youngsters but “may your soul live on”. May your names be revealed to other students in the text books you used. May your name appear etched in trophies and banners in display cases in the arenas and gyms in which you competed. May you be visible always to your friends and teachers in the class photos you took in school and may all the smart, quirky, crazy, admirable and goofy things you said and did be vivid memories for those who knew you and loved you, for this is how the essence of who you are lives FOREVER.

The pain and suffering of illness is over. Death is the pause between the physical life you had and the eternal life of your soul.  There is no permanent end, therefore there is no death – only life.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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