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Challenges of Special Needs Parenting

This week, I am participating in the WEGO Health “Advocating for Another” carnival. Each day, there is a prompt that I answer in the form of a blog post. Although only George has the autism diagnosis, we also recognize the challenges faced by his little brother. All of my posts here this week are dedicated to him.

Today’s prompt: Challenge accepted! Parenting isn’t all sunshine and ice cream – it’s hard. Write a post that delves into 3 challenges that you face as a parent.

Me and my boys, September 2010

“That must be so hard.”

That is a common response when people find out that my son has autism. And they are right. It is hard, but not necessarily in the ways one might expect. Because as parents, we all do what we have to do. We all want the same things for our children, whether they have special needs or not. We try to keep our children safe, and for me, that sometimes means physically restraining my son to stop him from banging his head on the hardwood floor. We try to make sure they are reaching whatever potential they are capable of, and for our family, that entails intensive behavioural intervention, speech therapy, individual education plans, and navigating the special education system.

These things are challenging, and at times, heartbreaking. But I am so busy just doing what needs to be done that I don’t really give a lot of thought to the hardship factor of it all. At the end of the day, the reward is far greater than the challenge. We get the smiles, the hugs, the occasional leaps of progress that make it all worthwhile.

As full of bravado as I might sound, though, I am only human, and there are things about this whole special needs parenting gig that I wish I could be better at.

Managing the sibling connection

I often worry that James got a rough deal, being the brother of a kid with autism. So many things happen that, if I were in James’ shoes, I would be downright mad about. James, for instance, gets more timeouts than George, not only because he is more aware of what his behaviour should be like, but because George doesn’t really get discipline. I can explain to James until I’m blue in the face that the best way to punish George for bad behaviour is to simply ignore it, but how can a six-year-old be expected to understand that?

Then there are the times when James has to patiently stand by waiting for attention while I am dealing with one of George’s meltdowns. Those meltdowns, which involve George screaming in frustration and trying to bang his head on things, must be so frightening for James to see and hear. And yet this little kid waits patiently for whatever he needs, be it a cup of milk, or the answer to a question, or simply a comforting hug.

I try to make it up to James in other ways. I try to talk to him about George’s autism and what it means. There is no doubt in my mind that James adores his brother, and for the most part he seems to be happy. But I cannot help wondering just how well I am doing this parenting thing. How good a job am I doing of balancing the oft-conflicting needs of my two boys?

Managing the marital connection

When George was first diagnosed with autism just over five years ago, my doctor gave me a startling statistic. About 80% of couples who have children with special needs or chronic illnesses break up. I think that is unspeakably sad. I mean, when someone’s life is turned upside down by the reality of there being something wrong with their child, a strong spousal partnership could bring such comfort and take away that feeling of being all alone. But instead of coming closer together, many couples are ripped apart by their grief.

My husband and I both went through a process of grieving when we first discovered that George had autism. We had put together a beautiful picture of what our family life was going to be like, and in one swoop that picture was destroyed. At the time, we had no way of knowing that we would ultimately build a new picture – one very different to the original, but no less beautiful. All we knew was that we were crushed under the weight of what was going on.

Things got rough for us, but we survived. Together. We have our moments where things aren’t so great, but in the end we are partners, and we are in this together.

It can be so hard, though, to find the time and energy for one another. We are both working so hard to create the best possible lives for our boys, that sometimes we drift a little. At those times, we have to make the effort to drift towards each other.

Managing my own needs

I don’t claim to be anything special. I’m just a regular mom who happens to have a child with autism. I have a full-time job a one-hour commute away from home, I help out with my husband’s business, and I raise my kids. I cook, I clean, and I do laundry. I make sure the bills get paid and I try to get to bed at a reasonable hour each night.

I stay sane by running, and by writing. Occasionally, I even write stuff that makes sense. I love to write because it gives me a voice. I love to run because it provides a physical release from the stress, and because it gives me time to myself, to clear my head.

Here’s the thing, though: I am only one person, and no matter how well I manage my time, there are only 24 hours in one day. And when I start running out of time to do everything that needs to be done, the first thing to go is the stuff that I do for myself. Gaps start to appear in my blog. I submit archive pieces to the ezine I write for. I curtail training runs, or even – Lord forbid – cut them out altogether.

It’s as if my lowest priority in my life is myself. And I wonder if that is OK. Could those bills not be paid tomorrow instead of today? Will the world end if the laundry doesn’t get done right away? Does it matter that, once in a while, I’m grabbing something convenient from the freezer just so I can spend time taking care of myself?

I don’t know the answers. But I do think I do a reasonable job as a parent, and I am having the time of my life seeing my kids grow up.

(Photo credit: Holly Bannerman)

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Remembering Dad – Seven Years On

I was watching The Apprentice when I got the news that my Dad had died. I should have known as soon as I looked on the phone display that something was wrong. Although it was a reasonable enough hour in my own time zone, it was three in the morning in South Africa. Be that as it may, when I answered the phone, I had no idea that I had lost a parent. Even though Dad had been gravely ill in hospital, the news came as a terrible shock.

The story of Dad’s illness and death is all too common these days. He had been sick on and off for a couple of years, but despite numerous visits to the doctor, cancer had only been diagnosed six weeks prior to his death. By then, the tumour in his bladder was too big to remove, and Dad’s only shot at survival was aggressive chemotherapy followed by surgical removal of the entire bladder. He survived the chemotherapy – only just – and he made it through the twelve-hour operation. In the end, though, his body was just too weak to survive all that it had been put through, and a few days after the surgery, he winged his way from this world to the next.

It was December 6th, 2004. Seven years ago today.

When we lose someone close to us, we are supposed to go through the stages of grief. Denial. Anger. Bargaining. Depression. Acceptance.

I had heard of this theory, of course, but I had never really found it to be of any use. It suggests that these stages happen sequentially, that you cannot ever get to acceptance until you have passed through the other four stages. According to this theory, once you are in the Acceptance stage, you’re done with your grieving.

The reality is that grieving is such a personal, individual process, and everyone does it differently. Denial has definitely been a big part of my own experience, and although I am mostly over that, I still have moments of thinking, “Gone??? What do you mean, gone? That’s impossible!” By contrast, I have not spent a single moment in the Bargaining phase, although that could still be coming.

What about this one, though? Guilt. Where does that fit in with this whole stages of grieving thing? I’m sure I’m not the only one to experience it with the death of a loved one. What could I have done? Why didn’t I travel home to see him before he died? Why am I remembering every argument we ever had, when I should be focusing on the many good times we shared?

The stage of grief that I have the biggest problem with, though, is acceptance. This is supposed to be the pinnacle, the reward we can all look forward to if we can just get through all of the other stuff that comes before it. But is it really truly attainable? Yes, we can get to a point where we can lead our lives without the person we have lost, but can we ever fully accept it? Can my Mom, who was married to Dad for forty years, be reasonably expected to completely reconcile herself with the fact that her husband – her best friend, the man she lived with, travelled with, and raised children with – is no longer by her side?

Here’s the bigger question: what does acceptance really mean? It seems to me that once someone reaches that magical stage, they are expected to be OK. They are not allowed to be sad anymore because their grieving is done. And honestly, there is a part of me that doesn’t really want to reach that stage. Because doesn’t acceptance imply that you are OK with the person not being around anymore? And isn’t that a form of betrayal to them? Like you’re prepared to finally let go of what little you have left of them?

To some people, the stages of grief can be a useful roadmap, a guide to let them know what’s coming next. For me, it’s frustrating. I loop back and forth between the stages too much, and I’m ambivalent about the prize. I mean, how likely am I to strive for acceptance if it’s not what I really want?

So today, seven years after Dad left us, I don’t really know where I am with this whole grieving process.

What I do know is that Dad was many things to many people. He was a great marathoner in his youth and he fuelled my own love of running. He was an astute businessman who gave me countless tidbits of financial advice and did my taxes every year in exchange for a bag of sugar-coated almonds. He was both reader and storyteller, dramatist and comedian. He had an appreciation for the simple pleasures in life, and would take his time washing the dishes just so he could watch the sunset through the kitchen window while he was doing it. He adored his dogs and cats, and spent many Sundays polishing his car surrounded by family pets. Along with my Mom, he gave me and my brother the opportunity to grow up witnessing what a loving, supportive partnership should look like. To me and my brother, he was Dad – the best one we could have asked for. And during the brief period of time for which he shared a planet with my son George, he was the most loving, doting Granddad any kid could wish for.

I don’t know what happens to us when we die. I choose to believe that Dad is around somewhere, watching fondly over his grandsons, cheering me on when I run races, clicking his tongue impatiently when I make stupid decisions, and having a good old giggle when I get caught in the rain and wind up with a bad hair day.

Rest in peace, Dad. Someday, I’ll see you on the other side.

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Chances Of Hope

It is incredible – and sometimes so desperately sad – how everything can change in the blink of an eye.  Just a week ago, I was tweeting and posting messages on my Facebook wall asking people to think healing thoughts for the survival of a little baby known affectionately as Capt. Snuggles.

Today I am asking everyone to send out thoughts of strength and love to his grieving mother, Amy, three days after the tiny body of Capt. Snuggles was laid to rest.

It’s one of those situations where words are not enough.  What do you say to a Mom who has just buried her child?  “I’m sorry your baby died”?  That seems so trite, so inadequate, not nearly enough to express the depth of the sorrow I feel, which is nothing compared to what Amy must be feeling.

It’s not to say that I haven’t tried.  I have left Amy messages letting her know that I am here for her, that I am grieving with her, that I want to do what I can to shoulder some of the heaviness that is filling her world right now.  When she is ready, if and when she needs to, she will reach out to me.  She knows (I hope!) that I am here.  For now, that is what matters.

There is a message that I want to put out there, though, to everyone who reads this.  Capt. Snuggles, during his five month stay in the hospital, underwent a massive array of medical treatments.  That he had hope at all was due to the fact that a family allowed the liver of their loved one to be given to the Captain.  Without that liver, there wouldn’t have been hope.

If you are healthy, if there is no medical reason for you not to, please sign your donor cards.  Please talk to your families, let them know that if they ever have to say goodbye to you, that you would like for your organs to be used to save someone’s life, or at the very least, to give someone hope, to give a family hope.

Capt. Snuggles also received blood.  Many, many units of blood.  Again, that blood would not have been there if there were not people out there willing to give away blood of their own.  These events have inspired me to become a blood donor myself.  I donated for the first time on Thursday, January 20th, and I will donating again in March.  Every 56 days, I will roll up my sleeve, and whisper a prayer for the unknown person who will receive the blood flowing out of me.

I am hoping that by writing this, at least one person who reads it will consider becoming a blood donor.  I know that there are people who are not able to donate for medical reasons.  There are people who really do need to keep their blood for themselves.  But for the majority of us, giving away blood is a piece of cake.  I had absolutely no ill effects after my encounter with Canadian Blood Services.  I felt great, and I didn’t even have a bruise.

If you are medically able to, please look into what it will take to donate blood in your area.  Please think about saving a life, bringing hope and joy to a family.

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Farewell To A Hero: RIP Sgt Ryan Russell

Today, in a departure from my usual selection of topics, I want to talk about the police.  Depending on who you are talking to, this can be a surprisingly heated topic.  People go on about police brutality, racial profiling, and all of that kind of bad stuff.  I am not denying that it happens.  Some police officers are total asshats (I saw that word in another blog and liked it, and I’ve been itching to use it in a sentence ever since).  There are the bad cops who will discriminate, abuse, and power-trip from here to the moon.

But for the most part, police officers are the good guys.  The cop who responded when George accidentally called 911 at the age of eleven months was very understanding.  He allowed us to take a picture of himself with George, and with the two firefighters who also came.  We didn’t get hit with a fine, our child was not incarcerated, and everyone went home happy.

Then there was the policeman named Larry who took time for James, who was two at the time and had squealed excitedly upon seeing a real police car.  Larry showed James the car and chatted with him, and by the end of it James was wide-eyed with the wonder of talking to a “real policecar man”.  It may have only been five minutes of Larry’s time, but I will never forget how his kindness made my child happy.

And today, as the city mourns, Toronto’s Finest are burying one of their own, Sgt. Ryan Russell, killed in the line of duty last week.

In a sequence of events that seems so pointless, a man stole a snowplow and for two hours he used it to go on a terrifying rampage through city streets.  He crashed into parked cars, drove into a storefront, and rammed into a taxi occupied by its driver.  As Sgt. Russell tried to intervene, the snowplow was driven right into him and crushed him.  He was taken to hospital, where he died of his injuries.

One police officer taken from us while trying to serve and protect.

One woman thrust into widowhood far too young.

One two-year-old child who will grow up without his father.

An entire city grieving for the first Toronto police officer killed in the line of duty since 2002.

As I write this article, the funeral has just started.  More than 10,000 people are there – friends and family members of the man being honoured, members of the public, police officers from all across North America.  The show of respect is phenomenal.  And that’s the way it should be.  Police officers are heroes.  They deserve recognition and appreciation while they are alive, and they deserve a damned good send-off when they die.

R.I.P. Sgt Russell.  You are a hero and I am shedding a tear for you.

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Farewell To A Hero: RIP Sgt Ryan Russell

Today, in a departure from my usual selection of topics, I want to talk about the police.  Depending on who you are talking to, this can be a surprisingly heated topic.  People go on about police brutality, racial profiling, and all of that kind of bad stuff.  I am not denying that it happens.  Some police officers are total asshats (I saw that word in another blog and liked it, and I’ve been itching to use it in a sentence ever since).  There are the bad cops who will discriminate, abuse, and power-trip from here to the moon.

But for the most part, police officers are the good guys.  The cop who responded when George accidentally called 911 at the age of eleven months was very understanding.  He allowed us to take a picture of himself with George, and with the two firefighters who also came.  We didn’t get hit with a fine, our child was not incarcerated, and everyone went home happy.

Then there was the policeman named Larry who took time for James, who was two at the time and had squealed excitedly upon seeing a real police car.  Larry showed James the car and chatted with him, and by the end of it James was wide-eyed with the wonder of talking to a “real policecar man”.  It may have only been five minutes of Larry’s time, but I will never forget how his kindness made my child happy.

And today, as the city mourns, Toronto’s Finest are burying one of their own, Sgt. Ryan Russell, killed in the line of duty last week.

In a sequence of events that seems so pointless, a man stole a snowplow and for two hours he used it to go on a terrifying rampage through city streets.  He crashed into parked cars, drove into a storefront, and rammed into a taxi occupied by its driver.  As Sgt. Russell tried to intervene, the snowplow was driven right into him and crushed him.  He was taken to hospital, where he died of his injuries.

One police officer taken from us while trying to serve and protect.

One woman thrust into widowhood far too young.

One two-year-old child who will grow up without his father.

An entire city grieving for the first Toronto police officer killed in the line of duty since 2002.

As I write this article, the funeral has just started.  More than 10,000 people are there – friends and family members of the man being honoured, members of the public, police officers from all across North America.  The show of respect is phenomenal.  And that’s the way it should be.  Police officers are heroes.  They deserve recognition and appreciation while they are alive, and they deserve a damned good send-off when they die.

R.I.P. Sgt Russell.  You are a hero and I am shedding a tear for you.