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Finally … We can breathe!

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

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

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

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

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

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World Autism Day 2015

“Blue blue my world is blue,

Blue is my world now I’m without you.”

When Andre Popp wrote this song it was about lost love.  I remember humming it in my head, laughing to myself (and maybe at myself) in a kind of crazy disbelief of my life when I was told my first baby boy had autism.  I felt so sad in the beginning as the child I thought I had was gone and it was anger and love  that made me fight for him.  I describe it as a scene where I saw him as being miles away from me sitting in the darkness and I was tirelessly tossing him a bright white rope – a lifeline that I was waiting for him to grab hold of so I could pull him back to me.  I’d toss and toss and hope for him to just catch it and hold it tight and every time he didn’t, I’d come up with a new way to throw it or to make it more attractive.  Without Adam, the Adam I thought we had, our world was sad blue…and then one day, he caught the “rope” and with Tom and Logan’s help, I’ve been pulling him back ever since.  And our world?  Still blue…a beautiful bright blue even on days when autism makes things tough.

Today, while I think about our Adam and all the adults and kids I know like him, I think mostly of their families and my family.  I think about how far from the norm our normal is and all the adjusting, modifying, sacrificing we do sometimes just to go to the store.  I think about getting to the point where all you have left is love and it is the only thing that motivates you to get out of bed after a rough night with your kid(s). I think about the joy we feel for each other when the tiniest achievement is made by one of our children and I think about the times we’ve walked, run, fund-raised, hugged, laughed, cried and vented together.  I think about the pain we have all buried deep inside just so that we can keep going for our autistic kids and our other kids and I look at the good people we all are and what fantastic parents we are and are still becoming and still I am at a loss for why our children are a part of this strange, brilliant, unique, fascinating yet complicated and often incomprehensible world of autism.  What happened when we were having them?  What happened after they were born?  We most likely will never know what causes autism and honestly, for me, it’s ok.  It’s all finally becoming ok.  I have the most amazing son whose world is so different from mine yet, he shines every time he sings, draws, runs or skates around an arena so quickly, he looks like he’s flying.  I have my awesome Logan whose joie de vivre and compassionate and patient personality fills in the spaces of  the puzzle and he makes us whole. And then there is Tom who gives me the strength I need when I think I have nothing left.  And because he is always there supporting me, pushing me and sometimes just sitting beside me holding my hand, I am never afraid.   He takes care of us, loves us, fixes everything and makes it all better all the time.  He provides for us and most of all finds ways to make our lives fun and normal and I truly believe he was meant for me as much as Adam and Logan were meant to be our sons.

Today I ask you all to remember those with autism but also remember their families, today, this week and every week.  Don’t see us with pitiful eyes because we are too strong for your pity.  What we need is your support.  Don’t leave us alone, don’t mind your own business…we are your business and we need your help very often in the simplest of ways. Come and find out what tired really is and offer a few hours of respite to your neighbour who has a kid with autism. You won’t do anything wrong, you are able to handle it and you’ll be doing something so good for someone else, I promise you there will be no end to the warm and joyful feeling you’ll have inside just by giving parents an opportunity to take a break and breathe.  If you like to draw or paint, spend half an hour with someone with autism and challenge yourself to find a way to reach them with your craft. Take them for a swim or to a movie or take them bowling. Sing with them, play music for them and show them you are interested in being a part of their world and invite them to be a part of yours. Imagine if you could not reach out to people socially and no one but your parents ever reached out to you.  Befriend them. Parents can’t do it alone. Together, we can make a difference in the lives of our autistic children and their families.

Here’s to Adam, Logan, Tom, Grampa J, Granny A, Cameron, Quin, Shelley, Martin, Betty, Claude,Ange, Kate, Alyssa Scott, Abby, Chris, JoAnne, Matt and his brother and sisters, Yvonne, Paul, Carson, Rheanne, Rowan and his Grands, Amber,Bailey, Alice, Romano, Andrew, George, Maria, Costa, Anthony and their sister and brother, Lisa, Noah, Aiden, Benzie, Mark Simon and his brother and sisters, Lorna and son, Karlene and son,Petunia, Linda, BJ, Gabe, Liam Darren  and to the many, many families I have connected with over the years. My light shines tonight for you.   I love you all because you are my family and my world is bright blue because I know all of you.

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Can Human Beings Find Balance to Create Peace?

Martin Luther King Day was this week and on the major network talk shows, the actors from the movie Selma spoke about the significance of the film.  They expressed how proud and honoured they were to be a part of something that would remind and teach people about Dr. King and how he affected change in America.  A common reference in the talk show interviews with the actors was the irony and the timely release of the film in light of the deaths of Eric Garner and  Michael Brown.  I wonder what Dr. King would say about America if he was alive today?  What would he say about the world? We walk alongside each other in the streets, we work side by side but the racism, discrimination and hatred is still there lying just under our skin, seeping out of our pores and tainting society because mankind has never been truly accepting of difference.  We pretend to like all things unique but somewhere inside us we don’t.  The majority of us prefer to be the same and really don’t like to draw attention to ourselves.  We can deny it but to this day we still live our lives by archaic guidelines.

In my quest to move forward in 2015 with love, I find myself wondering how human beings can change the current of violence and hatred we are on.  I’m not saying the world is all doom and gloom or overrun with bad people – it isn’t, but we know there are a lot of things we need to permanently change for the better.  We also know that we have many alternatives to unkindness, hatred and violence that we just don’t choose to put into effect.

We live in a time when watching the effect of terror on the world is a regular occurrence.  Our living room has become a window to a world where hatred and violence unfortunately are commonplace. Those of us able to recall September 11, remember sitting in front of the television speechless and tearful as what looked like an accident was in reality the biggest act of terror of our time. We watched live coverage of the towers as they burned, tiny fragments falling from them – tiny fragments that we quickly realized were people jumping to their death as they tried to escape the fire.  9-11 was a day of triumph for an evil few and a great tragedy for the rest of the world.  We were afraid; there was great anguish.  We shed tears of sorrow and despair over lives lost and tears of joy whenever a survivor was rescued.  At certain points throughout that day and the days that followed we felt hopeless, discouraged, angry and disappointed in mankind but we also saw that this act of terror made the majority of us (the good people of this world) better.  We dug deep into ourselves and found our compassion.  We knew how to be kind again and we acted out of love.  On the news we saw one colour as soot and ash covered hands reached out and grabbed others and pulled them them to safety, drew them into secure and comforting hugs and tended to their wounds.  This terrible, unfortunate and evil historic event gave way to the incredible strength and inherent goodness of the human spirit and many remarked that we would be forever changed.

Over time, structures were repaired and rebuilt and monuments were erected lest we forget and ever so subtly we returned to the rhythm of modern life – keeping our heads down, working the job, pushing through the stress, minding our own business and balancing everything in our lives just to get to the next thing, the next hour, the next moment, the next day, month and year. But the terror has not stopped and we are truly afraid.  We are hyper-observant when we travel and whatever our colour we sometimes are suspicious of brown faces and non-western religious attire.  We can say that we stand up to terror by not backing down or changing the way we live our lives. We can say we will continue to travel wherever we want, however we want, but deep down we are fearful and mistrusting.   In retaliation to terror some of us have become comfortably critical of the religious rites of others and have no problem ridiculing a person’s faith.  And while it is a person’s democratic right to speak freely and express their opinion, is it wise to provoke violence?

A dear friend, posted a beautiful and insightful quote on her timeline from Deepak Chopra that says,

“Speech can cause humiliation and incite violence or heal.  Freedom of speech can be a path to           enlightenment, or a road to death and destruction.  The enlightened purpose of speech in wisdom         traditions is to create bliss, joy, happiness, peace and healing in the listener.  If you pause before         speaking and ask: Is it necessary? Is it useful? Is it kind? [Then]  you are wisely using the privilege       of freedom of speech”.

All religions are ridiculed one time or another without violent retaliation.  Charlie Hebdo is notorious for their political and religious satire and while what they published was deemed offensive by the terrorists who sought revenge, they did not deserve the attack on their facility in 2011 and no one deserved to lose their lives in the recent attack this month.   No one who is truly religious will act violently in the name of their faith.  No religion urges people to kill in the name of their God.   I watch the news with my hand pressed to my lips far too many times as I see the result of cruel acts of the ruthless on the innocent but what concerns me is that I am not experiencing the shock and grief of 9-11. I watched the news reports on the cowardly and brutal slayings of Warrant Officer Patrice Vincent and Corporal Nathan Cirillo in Ottawa last October.  I watched  the coverage of the  Sydney Cafe Siege in Australia, the Peshawar School attacks in Pakistan and the terror attacks in Paris and I cannot recall a time when I did not see footage of the unending violence in the Middle East or civil war in Africa.  As I wrote this this week, there was breaking news that ISIS had taken two Japanese men hostage and are demanding an exorbitant amount of money for their release to the tune of $200 million dollars.  When will the terror and hatred stop?   I have come to a point in my life where it seems I almost expect to see this horror and more than ever I find myself wondering what good people can do to eradicate evil.  Could our world be saved if we all pursued balance amid the chaos that is terrorism?  Could we perhaps be more mindful of what we say out loud?  As Chopra says, if what we say is not useful or kind should we say it?  Should we offend and provoke and put people’s lives at risk?  And on the flip side, how dare we decide that killing in the name of any God is justified? Since when do mere mortals get to decide that any God promotes violence over peace?

Standing up to terror by going on with our lives and pretending to shun fear is a valid and valiant way to counteract it but it isn’t enough.  Saying and doing whatever we want whenever we want is our democratic right but perhaps we need to think about how far is too far.  People are dying and I am not sure it will end if we don’t find other ways to stop the senseless acts of violence.  Free speech is truly the right of humankind but most of us don’t go up to people and out rightly insult them.  What is the point of teaching our children to be accepting of all people regardless of their culture, race, religion or creed when we can’t set an example for them?

So what do we do? If the majority of us approach others with kindness and love and turn our back on violence and hatred can we count on those who resort to horrific measures to turn their back on evil and work to create a balance among all people and nations so that we can live in peace among each other in spite of our differences?

In conclusion, I cannot come to a conclusion.  This topic has been on my mind for a couple months and I have been working on writing my thoughts on it for a week.  I’m afraid in trying to raise points about embracing peace and putting it into practice, I have discovered that we may not be able to change the world even if the majority of us puts forth our efforts.  Maybe evil carried out by a minority is stronger than all the love and good intentions of many.  Maybe (and I am afraid this statement might be true) we may never find peace and we may never be able to create a balance among mankind because it only takes just a little bit of evil to tip the scale.  But in the small space I occupy on the planet, I will try to move forward everyday with love.  I will teach my children the value of peace, love and kindness and I will continue to hope that some day we humans will figure out that underneath the surface, under our skin we are all the same and we need the same things to survive.

 

 

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2015 – The Year to Move Forward with Love.

When my husband and I renewed our vows in 2007, we’d been together for 10 years.  He waited until the last minute to write his vows to me and he stole the show to say the least and brought tears to my eyes.  In them, he promised something that still sticks with me to this day and it was to continue hand in hand with me on the roller coaster that is our life together.  I held on to his words every day last year in what was the most difficult one for our family.  Our pain and struggle came in the form desperately trying to save our son who was struggling for his independence while living with autism and going through puberty.  Suffice it to say, when things are not right with a family member every aspect of everyone’s lives is affected and it seemed like there was a dark cloud hovering over our heads.

Though the roller coaster of 2014 was the harshest and most stomach churning of all our years since the children were born, I can speak on behalf of my husband and sons and say that it was also one of the most enriching and rewarding because it is in hard times that we see who we really are and who to call acquaintance and who we can truly call friend and who need not accompany us into the new year.  2014 reminded me that love is the only answer, ingredient, magic trick, drug, tool or whatever you want to call it that can truly change anything. Love turns darkness into light.  Though I have always been surrounded by love, it is only as I have gotten older and more in tune with who I am and who I will eventually settle to be, that I know how to truly love.  And by that I mean love all people and how to find love in different situations and places.  Love can save a child, can save a marriage, a life or many lives.  It can put food on a table, toys in the hands of a child, wrap a warm blanket around a homeless person or simply a smile on someone’s face.  I was fortunate to be surrounded by love and a lot of it came to me via virtual strangers whose kindness have made them part of my family.

I have always made a point of giving. Giving in ways that matter. Giving subtly and  because my family was so fortunate to have received so much love this year, it encouraged me to seek it out more.  My husband and I found ourselves looking at documentaries about people who changed communities by simple acts of love.  I found myself smiling even on the hardest days, knowing that we were still better off than so many around the world.  I found myself listening more, caring more and I was inspired to be less angry, less sorry for myself and my family’s situation and forge into 2015 with hope.

2014 also taught me that to move forward with love, you have to choose how best to spend your time and with whom.  Moving forward with love also means cutting off the sticky, clinging arms of those who hold you back.  You know, those whom you like well enough but there is an underlying quality of their nature that is corrosive and it doesn’t do anything positive for anyone?  Yeah, those people.  The ones you are polite to, tolerate as you listen to their incessant whining about something so frivolous you don’t understand how evolution hasn’t made them extinct by now.  The person so absorbed in their own destructive behavior that they have no clue that they are dragging down the ones who love them the most. Yeah, that person.  The rather rude person who needs to be seen talking to the right person in the crowd and if that happens to be you, you can set your watch to the exact time when they walk off and head to someone they deem more popular than you, in spite of the fact you’re in mid-conversation with them.  Particularly amazed by that particular breed of human. Then there is the friend who commends you for being the rock they needed in their time of struggle but doesn’t have the decency to ask how you’re doing or make a concerted effort to spend time with you as you do your best to get through each day.  That person is from the always baffling, self- absorbed centre of the universe club.  But in my quest to embrace more love, I have not come to bear any malice towards these people.  I truly do love them.  Love them enough to forgive them for not being smart enough, or kind enough, or sensitive enough to others. Love them enough to let them go. And while I am happy to forgive them I won’t forget not one precious second of my time be wasted on them because it will deprive others of what I have to give.

2014 showed me how much my mother and my sister, my cousins, aunts and uncles, father-in-law and SJC sisters love me and my family.  It showed me just how much my sisters-in-law and brothers-in law, try their best to be a part of our lives even though they are so far away.  I feel the love of my dear friends J, F and L across the miles and it keeps me strong and it was because of these people and a few used-to-be-strangers that my family and I were able to stay afloat on a wave of love that took us right to the end of 2014 and washed us safely onto the shores of 2015.  We’ve gotten to our feet, we’ve breathed in the fresh air and we are filled with courage but most of all we are filled with love  – love that we want to give.  I wish you all a 2015 of love.  Love to give.  Love to receive. Love that will set us free.  Love that can change our families,communities and just maybe, change the world.

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

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

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

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

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

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

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

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

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

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

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

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The Real Score

It’s been quite some time since I’ve posted anything, mostly because life has been busy and rather complicated over the past 7 months.  But…we barreled through the difficult days and we have come up for air and for me, to write is to breathe.

During this time of non-writing, I did a lot of observation and now I have stuff to say.  Now I must warn you, while I am not an ogre, I am not sweet  and I call a spade a spade.  I am after all entitled to my opinion and this is my little avenue to speak my mind.  Like it, don’t like it…your prerogative. I am going to take my time to breathe.

On this rainy afternoon, I figure  I am going to write about something that has baffled me for about 6 years – the score board in kid’s sports.  Perhaps what I am about to discuss only happens in the province of Ontario.  Perhaps it only happens in Canada and maybe it’s just an ice and ball hockey thing but I am sure many of you may share my view on how ridiculous this score board “thing” is.

When my second son was almost 6 years old, he played in his first organized hockey house league.  At this level they followed the puck like a swarm of bees, not caring or knowing what it meant to be offside.  They had no real skill.  They had no understanding of organized play or strategy.  All they knew was the puck had to get in the net and every one of them wanted to be the one that put it there.

Now, being West Indian, I was baptized by fire when it came to developing the physical and mental stamina of supporting my kids in their winter sport of choice.  Little did I know then, this was just the beginning of many years of incorporating arenas into our family life and I have to say I have loved every freezing minute of watching my boys participate.  Now, maybe its the “it is what it is” or as it’s said in my native Trinidad,  my “francomen” upbringing, but I am confused about the score board.  Here in Ontario, ( I can only speak of this province) officials have decided to control the scoreboard so as not to demoralize the children. So if the score is 10 -2 in favour of either the home or visiting team, officials keep tabs of the true score while the scoreboard reflects a score of 5-2.  Hmmmmm….I know, eh?  Kinda silly, yes?

I will be the first to tell you that my kids had the traditional fantasies of chidhood. Their pretend play included Thomas the Tank Engine, Star Wars: Clone Wars … they were influenced by whatever the popular show or latest “it” toy was and they’ve been “Disneyed”.   My husband and I believe that childhood is too short and precious to exclude fantasy and we encouraged to imagine and dream, to have things to get excited about and wish for and they were encouraged to be just plain old silly. There is nothing like the innocence and happiness of children.   What I don’t understand is encouraging them to be active, teaching them the rules and the object of a game yet protecting them from possible disappointment.   Okay, okay, no one likes to see a kid with his or her feelings hurt.  No one likes to see a little kid cry but let’s face it, in life things are gonna hurt and they damn well might have to have a good cry and in time (sometimes in no time at all) they will get over it!

In a game, sport or in any kind of competition there is always a winner and a loser.  It’s great to win, and we should teach kids how to celebrate victory without gloating  and we have a responsibility to teach them how to lose as well.  It is good to lose.  It’s okay to feel crummy about losing but that’s wherewe come in as parents with the brief, (yes, brief…don’t get me started on the parents who over explain everything…) and encouraging conversation where we can teach our children that a good way to get rid of the crummy feeling is to get back out there next time and try a little harder to win.  And if even if they still don’t win, it just means they are a little closer to winning another day.

My son and his teammates are now 12 years old and the true score still isn’t reflected on the score board.  The funny thing is, they have ALWAYS known the real score because they’ve known how to count since they were two or three years old.   I would never forget hearing a couple kids after one of the games years ago saying, “Man, we got killed.  The score was really 10-2,” and in another breath the conversation switched to, “You going to Jacob’s party this afternoon?  He’s having a bouncy castle!”   My point?  The game was over and life went on.

How wonderful to have sports, games and hobbies available to so many!  Things so worthwhile and so necessary when it comes to teaching life skills and lessons in patience, acceptance, tolerance and camaraderie.  Just like us, our children need to accept triumph and defeat.  They need to know that a loss or a win does not need to affect every aspect of their lives.  We need to teach them to celebrate triumph while showing humility and respect for their opponent.  We also need to show them how to be to congratulate the winner and to be truly happy for them.   If we don’t let them be disappointed, they will grow up feeling entitled to things they may not deserve and they will be eaten up by jealousy.  If we keep making things easier for them, how will they ever know the pride and  joy of accomplishment due to hard work.

I get the impression that society is out of sorts sometimes when it comes to knowing what’s good and what’s bad for children.  On the one hand, some people who feel that being honest with children about sexuality at a young age and not “lying” to them about common or traditional childhood fantasies is the way to go.  Sometimes this “method” yields little adults who, in my opinion know things they really don’t understand.  Ironically enough on the other hand, these are the same people who are all for allowing the officials to display a bogus score instead of letting the kids deal with the fact that they are handily being beaten by the other team and are losing by 8 goals.

I remember losing as a child…at many things.  Sometimes it just happened because the other person was better than I was that day.  Sometimes it was mine to lose because I didn’t really try.  Sometimes my grades were good and sometimes they were not.  I tasted bitter disappointment but I also tasted the sweetness of success and I remember the success was always that much sweeter when it did not come easy.

Dear officials, I’m just one parent but I say please let’s not put our children at a disadvantage by surrounding them in a protective plastic bubble.  You are actually suffocating their potential for greatness. It is my job to boost my kid’s self esteem and teach him how to bounce back from loss.  Put the damn score on the board. It might hurt a little bit but I’m sure our kids will be okay.

 

 

 

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Tough Love I suppose

I sat here for some time trying to figure out what to call this entry but I did promise all B.S. aside so it is fitting I suppose.

It has been three months of turmoil in our family.  It was sudden, harsh, unpleasant, maddening and simply sad. But, life is not supposed to be easy all the time and we had a very nice long stretch of easy and since we are not more special or privileged than any other family so we took this as just the shit we would have to bear for a while.  My 11 year old son, Logan, has no problem with me sharing our story but he wants privacy when coming to the details and so I shall respect his wishes.

Adam is autistic and in puberty.  He understands everything that is said to him, can read and type and write and is a Special Olympics division 1 and 2 competitor in speed skating. He is also a pretty good artist and is a very capable and independent young person in spite of his autism.  I see teens in puberty and I know it is a hard time for them.  I also cannot compare it to my own puberty as this is a different generation exposed to so much more with a lot more avenues that create their own pressures.  This is a social media era and nothing is private and there is a great emphasis on fitting in, in a way we never had to deal with in our youth.  So I’m thinking having autism, being high functioning enough to sense certain vibes around you and going through puberty is even that much more difficult.

Adam’s frustration came in the form of nasty language that he’s discovered on you tube.  It’s one thing to hear swearing in school or wherever but what he was saying he had stumbled upon on line and it was clear he rehearsed it because we could tell that when we did not react the way others did on whatever it was he watched he didn’t really know what to do.  Did we censor his ipad?  Yes…as much as one could.  Was he able to find his way around our security?  Of course! He is a 14 year old living in this era so we had to resort to good old talking to him and explaining to him what were good and bad choices.  So the swearing was one thing…,the aggression was another and with autism Adam has trouble knowing when he has gone too far and what consequences really are. Let’s say my husband Tom has become really good at fixing drywall.  Adam literally would put a hole in a wall when he was angry.  So…he lost privileges in his room. We had to discipline him and so by the new year, he had just his bed in his room, no ipad, no electronics, nothing.  There was no way we could allow him the privilege of  these things when all he wanted to do was throw them.

During the time between Christmas Eve and now, Adam had been hospitalized for a while, just so that he would not be in our home and angry. Of course he was perfectly well behaved while there but he was still put on two different medications that made no sense to me and I lobbied for him to have an EEG to check for seizures that I suspected he might be having.  Basically, even though I was frustrated by what Adam was doing, he is still my son and I refused to have his behaviors medicated especially from the outside in.  Why treat something that way?  Why not rule out what could be going on internally before treating externally?  As a parent it is important to stress this when anyone wants to treat your child as doctors who are not versed in autism tend to see all little tics and habits as part of the condition.  My kid is a trickster and can use his “autistic stims” to make people go away.  Adam was so well behaved in the hospital, no one believed he was aggressive until I showed them recordings of him acting out.

Long story short, once he was discharged shortly after his birthday on January 2nd, we were walking on eggshells in our own home with Adam.  I have a lot of resources and over the years whether Adam needed them or not, I have kept in touch with these people and organizations and included Adam in all their group activities. We started behavior therapy and got a lot of out of home respite set up for Adam.  He is a very active person so the staff was able to take him to his activities and also have him do other outings with young people just like him and it helped quite a bit.  It was however a band aid solution as Adam came home from school, had dinner and was out until 10 pm pretty much every day. But as all programs face, there was only enough funding for that to carry on until the end of March and though Adam was behaving somewhat better we knew when the respite stopped the behaviors in the home would surface again.  So, I started advocating again.  I had called specific agencies and encouraged them to help me find a solution to dealing with Adam at this time and I decided that it was time to pull out what was in my heart of hearts and request that Adam live somewhere else without us giving up custody of him.  Respite in the form of a foster living kind of situation. Since he is good to everyone else and the anger is directed towards Tom and me because we are his parents and the acting out pretty much only happens at home…then he can’t be in our home.  There are three other people living here and there is an 11 year old to raise, there is a business to run and bills to pay and coming home has always been wonderful until now.  Knowing that I was raising a very independent autistic young man, I was aware that he would certainly be able to live out of our home with assistance, whether if that was with other young men like himself in a group home, or with a trained couple….I was never arrogant to decide that he should live with us for the rest of his life.  I always only ever wanted to put two happy and independent young people on the planet and that has never changed.  I just didn’t think Adam would “want outta here” as he said over and over again, at 14.

We were matched with a lovely couple who are trained and experienced in this sort of thing who were ready to care for someone like Adam.  They had certainly done this before, had raised three successful boys of their own and they are very similar to us with respect to morals and values.  We will see Adam regularly but for now he is there most of the time so that he can settle in.  He loves it there.  Where we live in the city, they are in the country.  We are into sports and they are into farming and automobiles.  We are tall and lanky they are shorter and stocky…different but in the ways that count for his well being, the same.  He has visited us and had mostly good moments but there were a couple incidents that reminded us why we chose to do what we did.  It is our hope with all the behavior therapy, speech therapy and occupational therapy we have in place that is more specific for a pubescent young man that he will sort through his feelings.  It is our hope that he will miss us and enjoy coming home to visit and that we can recapture the relationship we had before all this started…or at least one that one can expect to have not with a child but with a young man.  We hope to continue to include him on family vacations and special occasions and and that we can all support him so that he will continue to be successful in his beloved speed skating and art and in life.

Adam is on a low dose anti seizure med now with magnesium bisiglycerate and b6  DMG and zinc supplements along with his diet.  He is starting conversations now and is talking more than ever.   We are all working on breaking him of a physical stim he has decided to hang on to so that he can use it to avoid responsibilities…a side effect of one of the meds he was on just a month ago and his enjoying his down time in the country now that the skating season is over.  We came back from a work conference last Thursday and that evening packed his clothes in a suitcase and sent him to his surrogate family.  I packed his clothes and things systematically without shedding a tear and the three of us dropped him off.  We were comforted when we saw where they lived and were able to chat with them in their own environment.  They had looked after him while we were away as a sort of trial run and Adam did quite well during those 4 days.  We drove away quietly, each of the three of us thinking our own thoughts but knowing this was a necessary step in keeping our family together during Adam’s puberty.  The alternative was keeping him at home and having him explode angrily and being destructive and tearing us all apart until we would have no choice to call child services to permanently take him away. That would ruin our Adam and all that he has worked so hard to achieve and none of us want that.

So here we are …at home…less stressed but still a bit sad.  I am not sure we will ever really get used to Adam not being here everyday.  As a mother, it tears you apart when you put your child’s clothes into a suitcase and sending him to another woman’s home.  It tears you apart knowing that another woman is going to raise your child on a daily basis for the next while and that he actually prefers going to her home than to yours. But somehow you don’t cry.  You hold it together in yoga, in therapy and at home and at work …you hold it together until your mother tells you on the phone that you are brave and only the bravest of women know that you can love your child and your family enough to make the choice to send Adam away given our circumstances.  My mother did not pretend to understand how I felt. She did not judge or give advice…she gave support.  She told me that as mothers we are not supposed to raise our children alone and like good old Hilary said it does “take a village”.  Adam’s surrogate family is now part of our family.  He now has more support; Logan has more of our attention at home and Tom and I have peace and we can begin to repair the things that we let slide because of our crisis with Adam over these past three months.  We don’t feel good that Adam is not in his bed in our home at night but we feel better about the way things are now.  We miss him everyday and cherish when he is home for a visit.  We love him dearly and we do worry about him but we are becoming more at peace knowing he is in good hands and all that we have put in place will help him through this time.  He has a lot to learn and we have made this possible for him. Love is love I suppose whether it’s kind or tough.

Before I end this, a word to parents of younger autistic kids – Your children have their own tough-to -handle moments now.  They can still be picked up, moved to another room, reprimanded etc., and though you are exhausted each and every day there is a point of control. You like us will raise the money to try anything that will help them with the effects of their autism and you will have things that will work and those that will not. Then your child, before you know it will be 10, 11 then in their teens. They will grow, develop and they will hit puberty.  During this time, they have control. To disagree with me is to be in denial.  Access your services …all of them…learn who to call, when to call and don’t judge a service on face value.  Child Services is not about taking your child away.  In fact, all services work together to do the best they can for your child and your family.  I am still Adam’s mother, Tom is still his father and Logan is still his brother. There will still be family gatherings, vacations and outings but if your living situation has to change to keep your family whole, please be open to change.  You can love your child no matter where he is. Tom and I have been and still are fantastic parents – the best ones Adam could ever have and we did our best. Look at all he can do because of our willingness to stop at nothing.  But know there is a time when you have to slow down and a time when you have to stop.  We know now it’s time to slow down and in a few years….it will be time to stop as Adam will become his own man and will not need us to help him in the ways he once needed us to. Please don’t let guilt or ego cloud your judgement. Recognize there are other people involved in your family and it is not only about your autistic child.  Setting up your home like autism central is not healthy. We never did and for that I am so glad.  Our promise was to meet Adam half way if he could try to do the same and he did – hence his independence and ability today. Please get your child’s name on a list for semi independent or group living now….space is by attrition and you don’t want to end up with a 30 year old child who never learned to live independently of you or has frustration because he is stuck with you when you are 80. You will die and leave this child behind one day so please don’t be close minded. Use your services …they are there for you and your familyand they will help your child reach his full potential.  Now…my son Adam is texting me so I gotta go.

 

 

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Siblings of Autistic Children: The Unsung Heroes

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

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

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

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

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

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

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

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