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

Are You Financially Prepared for a Critical Illness?

As a financial advisor, one of my husband’s duties is to protect his clients and their families against financial hardship in the event of illness or death. As his Licensed Advisor Assistant, we come across three kinds of people; those who believe in insurance, those who don’t and those who want it …for free.  Regardless of whom you are, our story will certainly make you think of yourselves in our situation.

I am a tough mother.  I don’t quit or scare easily and while I have come to accept and appreciate our life, I naively or arrogantly, believed that nothing bigger than our son’s autism would come our way – until the lump.

The lump appeared on Tom’s right thigh and albeit small, it was rock hard and worrisome.  The lumps I’d seen had taken people to their graves, most recently, my dear dad.  So, off we went to the   doctor who convinced Tom it was a lipoma but I wasn’t convinced.  The second doctor agreed with the first however I wanted to probe further because it was slowly becoming larger.   Cutting to the chase, it was NOT a lipoma.  The ultrasound report led to an MRI that showed that it was vascular and as we sat listening to what this could mean, I held my breath and tried to be brave.

We set off hand in hand, appointment to appointment, with a trump card that allowed us to remain calm and positive – we are both covered by Critical Illness Insurance.  I had Tom’s results forwarded to the Best Doctors Program exclusive to persons with our coverage. Soon we had the names and contact information of two Ontario specialists and one in the US and in days, they liaised with Tom’s physician and discussed a course of action.  None felt it was dangerous but to be sure it wasn’t cancerous, they wanted it removed and biopsied.

For reassurance, I called a colleague who used his Critical Illness Insurance to help him fight cancer.  Through the Best Doctors Program, he chose a cancer facility in the U.S for his surgery and treatment and was back at work in eight months fully cured.   Critical Illness Insurance allowed him to focus on conquering cancer.  On his advice, we took a family vacation to Florida to put the lump out of our minds until Tom’s biopsy in mid September.  That day, I thought about the odds of it being cancerous.   Worst case scenario Tom was sick and we’d have a fight ahead of us but we would put up a damn good one because his policy would give us more than enough money to take at least a year off work and go wherever and do whatever we needed to save him.   A year, where fighting for his life would be the priority and we would be able to fight privately without financially burdening family, friends or strangers.

The results came two weeks after the biopsy.  During that time we had the “In case if I get sick and die …” conversation.  In 2002 upon our son’s diagnosis of Autism, we cretaed a financial plan to secure the future of our family. We have ensured that our lifestyle would be maintained, our bills paid and there would be enough time for healing and sorting out our lives without rushing back to work or relying on financial help from others.  Best of all the money our insurance would yield will be tax and probate free.

When you are young, you’re invincible.  Bad things and sickness happen to other people.  Then adult life happens and you learn quickly it can be raw, messy and painful.   Life happened to us with our son’s autism and continues to happen but age and experience have prepared us to take our “lumps” along the way.

Our family doesn’t work without Tom.  He’s the love of my life and he is adored by our boys.  I can’t imagine our lives without him and luckily, I don’t have to for a while.

The lump was a benign fibrous tumor.  Tom is healthy but I know illness does not discriminate and it comes to all of us. Our advice is simple – find a reputable insurance company with a Critical Illness Insurance Plan that covers at least twenty illnesses that will also give you your money back if you never make a claim during the duration of the policy.  It’s a win, win situation.  You get sick; you get a big cheque to fight for your life.  You don’t get sick; you get your money back at the end of the policy.  Critical Illness Insurance is a policy that pays you to LIVE – how can you lose?  The only way you can lose is if you don’t have it.