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Autism Diaries: On This Day…

February 2, 2016 By
the autism boy

The Autism Boy

Thirteen years ago I was pregnant. The pregnancy was so new that nobody knew about it apart from me. I remember lying in bed hugging this secret close to me, this secret that I was sharing with no one but the baby growing inside me. I was terrified that my husband and I would experience a repeat of the loss we had been through just a few months previously. Stay with me, I silently begged the baby.

Twelve years ago I was a new mom. I spent time lying on a blanket with my months-old babe, holding his tiny hand in mine. I would look at his little fingers, at the curve of his cheek, and the fluttery eyelashes – and I would marvel at how something so small could be so perfect. I felt as if the future was a blank slate, just waiting to be written by this brand new human being.

Eleven years ago, I was a parent who had recently lost a parent. I held my one-year-old son, feeling immense gratitude that he had spent some time in his grandfather’s arms. I was afraid: when I lost my father, I lost a bit of my security. I somehow became more of an adult, and I wasn’t sure that I was ready for that.

Ten years ago, my little family had gained a new member. As I cared for my newborn baby, I worried about his older brother. I knew that something was not right, but the doctor said, “Wait. Give it some time.” When your instincts say one thing and your doctor says another, you have to decide which one to listen to. I listened to the wrong voice and waited.

Nine years ago, we had finally gotten the doctor to listen, and our firstborn son was on the waiting list for a developmental assessment. We didn’t need an assessment to know that something was wrong, but we were hopeful that whatever it was, it could be fixed. While we waited, we took our son to speech therapy and celebrated every single word that he uttered.

Eight years ago, my husband and I were trying to settle into our roles as autism parents. The initial shock of the diagnosis had worn off, and we were working our way through the labyrinth of government funding and services. At the same time, we were adjusting our dreams and goals to fit the new reality of autism.

Seven years ago, our autism boy was about to start his ABA therapy. It was a world that was completely unknown to us, a form of intervention that works for some kids but not others. Would it work for our boy? We had no way of knowing. A further assessment put him on the severe end of the autism spectrum, but we were urged not to lose hope.

Six years ago, we were one year into the ABA therapy, and we had seen our son make phenomenal progress. His vocabulary had exploded and we were starting to see the emergence of some amazing qualities. A follow-up assessment showed that he had made 23 months’ worth of gains in a 12-month period. Hope sprang eternal.

Five years ago, the boy was slowly, slowly being phased out of ABA therapy and into full-time school. We worried about whether the cessation of therapy would stall the progress we had seen him make. We were advised to expect a temporary plateau followed by slow but steady progress. Anything could happen, we were told. A full decade of school remained. A lot can happen in ten years. I held onto my rose-coloured glasses.

Four years ago, I suffered a devastating loss when my beloved aunt died in a freak accident. For the first time since the death of my father, I had to go away without my family. Leaving my husband and boys was excruciating, but I knew that I was needed on the other side of the world. The autism boy coped well with this big upheaval, helped enormously by his incredible little brother.

Three years ago, my stubborn optimism started to give way to realism. Yes, my son had many capabilities. He was doing well in his special ed program, and he was able to do things by himself, like get dressed and use the bathroom. He had come a long way since the days of his diagnosis. But there was still a lot that he couldn’t do. For the first time, I started to realize that in all probability, my boy would never attain complete independence.

Two years ago, we had to fight for our boy. The special ed programming at his school did not continue beyond Grade 6, and the placement he was slated for filled us with the horrors. The classroom – indeed, the entire school – was overcrowded and staffed with well-meaning but overwhelmed teachers. As I walked the hallways during my one and only visit, I detected an aura of barely contained hysteria. We were not going to risk the years of progress we had seen. And so, with my son’s principal by our side, we started a long series of meetings with the school board. And once again, we waited.

One year ago, the principal of my son’s school called with the news that the battle had been won. A special ed program for Grade 7 and 8 kids was being brought into his school – a school where the general student body forms a protective and loving wall around the special ed kids. I cried with joy, not only for my son, who was getting another two years in this amazing environment, but for all of the kids whose paths we had had a part in altering for the better.

Today, my son is in Grade 7, in his first year of the newly implemented program. He is doing well and continuing to make progress. I am happy with where he is, but I am afraid of where he is going. Because unlike the day of his diagnosis, when we had years of time ahead of us, we are now very close to the future we talked about then.

One year from now, the boy will be months away from finally leaving the security of the only school he has ever known. We do not know where he will be going for high school – that chapter of the story is starting to be written now. In the next few months – a full year ahead of when this would happen for typical kids – we will be starting to visit high schools, interview principals, look at special ed programs.

This year, next year, and for the rest of our lives, we will continue to do the best thing for our autism boy, to give him the opportunities he needs to reach his full potential – whatever that potential turns out to be.

This is an original post by Kirsten Doyle. Photo credit to the author.

Filed Under: Assessment, autism, Autism Diagnosis, Education, School, Special Education Tagged With: , , , , , , , , , , , , , , ,
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My Life According To Cars

January 29, 2014 By

 

The men in my life with the Soccer Mom car

The men in my life with the Soccer Mom car

In 26 years of driving, I have had five vehicles, and each of them has represented a different phase of my life.

My first car was a clapped out old Renault. It took me through my young-and-stupid student years and the first few years of my working life. It wasn’t sleek and shiny like some of my friends’ cars, but it had a great deal of character and it was surprisingly reliable for such an old car. Its decline coincided with the retirement of my mechanic: when his replacement took over, my car started leaving the repair shop with new problems. When I made it onto the afternoon traffic report for blocking a lane of a major road, I decided to sell the car. A co-worker purchased it, fully aware of all of the problems, and restored it. As far as I know, it’s still on the road.

With the Renault gone, I bought my first brand new car – a sexy, bright red Opel Corsa. That was my Single Working Girl car, purchased when I was earning a good salary but had only myself and a cat to take care of. It was the car of someone who is a professional, but who is still young enough to be a little bit adventurous. When I left the country in 2000, my parents bought the car from me. They eventually sold it to a family friend, who is still zooming around in it.

When I came to Canada, I got the Desperate Newcomer car. What I really wanted was to buy a new Pontiac that I had seen, but the dealership wouldn’t sell it to me because I hadn’t been in the country long enough to establish a credit rating. I needed a car, but no-one, it seemed, was willing to sell me one. It didn’t matter that I had a good salary and no debt. Apparently, that somehow made me more of a risk. Eventually, I found a dealer who was willing to lease me a Chevrolet Cavalier. It was an OK car, but I was a little peeved that I had to just take what I could get instead of being able to choose.

The lease on the Chev expired when George was about a month old. When I returned it to the dealership, I discovered that the dealer had actually given me a very raw deal. It wasn’t really surprising – as a newcomer to Canada with no social support system, I had been a very easy target. It meant that I had to pay the dealer a lot of money when I returned the car (and yes, buying it at that point would have been prohibitively expensive). Because of that and the fact that I was living on maternity leave benefits (translation: half of my regular salary), I had no money to put into a new car.

My mother-in-law came to the rescue by giving me the old Dodge van that had belonged to my father-in-law. He had been dead for seven months, so he no longer needed it. The thing was just sitting in the garage. I accepted the car gratefully, knowing that it was on its last legs. It got me from A to B, and since I was on maternity leave, I didn’t have to worry about whether it would survive daily commutes of an hour each way.

That was my New Mom car, and although I only drove it for a few months, I have many happy memories of it. I liked the idea of driving my father-in-law’s car. I had been very close to him, and felt that he would approve of me using his car. Almost every day, I would buckle my new baby into his infant carrier, and we would go off in the van to the mall, the bookstore, the coffee shop, or a park. I had some wonderful bonding time with him, and the old Dodge had a big part in that.

About two months before George’s first birthday, the Dodge shuffled off whatever mortal coil a car can possibly have, and I had to buy another vehicle. My husband and I looked at several used cars, and picked out a Chevy Venture van that was just a few months old and had only been used for demo purposes. Getting a minivan launched me into the Soccer Mom category. It doesn’t matter that I got the van when my son wasn’t old enough to walk, let alone kick a ball. If you’re a mom and you have a minivan, you are a Soccer Mom.

We still have the Soccer Mom van, and it  has seen us through ten years of family life. Since getting it, the size of our family has grown by one. Kids have graduated from infant carriers to baby seats to high-back boosters to bum-only boosters to no boosters. We have driven our children to daycare, to Kindergarten and to grade school. We have taken business trips and gone on vacations, and covered many, many miles.

The Soccer Mom van is now a Soccer Mom rust bucket. One of the doors sticks when you open it, and neither of the front windows will open. Bits and pieces keep having to be replaced to keep the thing going, and the time is coming when we will have no choice but to replace the entire car. We will have to start seeing who has a good – and cheap – car for sale.

Our next car will the the Fraught Mom-Of-Teens car. Whatever make, model and colour we get, it will see us through more of the exciting journey of family life.

This is an original post by Kirsten Doyle, published in accordance with my disclosure policy. Photo credit to the author.

Filed Under: Cars, family, life Tagged With: , , , , , , , , , , , , ,
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My Baby Forever

January 16, 2014 By

2013-08-22 08.08.28

Sometimes, I look at my older son George and lament the fact that he is growing up so quickly. He is ten now, and he has grown too big to sit on my lap. He is the same height as my mother-in-law and he has outgrown four pairs of shoes in the last year. The most scary thing of all is that he has started to show signs of early puberty. Before I know it, I will be dealing with the mysterious combination of autism and adolescence. He is going to keep getting taller and stronger, his voice will deepen, and he will get old enough to shave.

But then I have mornings like today. I always wake up earlier than anyone else, curl up on the couch with coffee and my phone, and have some quiet time to myself. I check my emails, see what’s happening on Facebook, maybe play games for a while. It’s my way of gently easing myself into the day before the the rest of the world wakes up.

This morning I was playing a few Words With Friends moves when George came padding into the room. He flopped down on the couch beside me and draped his lanky arms around my neck for hug as he rested his head on my shoulder. We sat like that for a few minutes, just the two of us in our own little universe, and then he lay down on one end of the couch, appropriating the blanket that I had been using.

I looked over at my boy, at his hair that was all mussed-up and his face that was puffy from sleep, and he gave me a gentle smile. In that moment, he looked young and vulnerable.

And I realised that no matter how old and big he gets,  he will always be my baby.

This is an original post by Kirsten Doyle. Photo credit to the author.

Filed Under: Childhood, Growing Up, Growth, parenting Tagged With: , , , , , , ,
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Endings And Beginnings

August 4, 2011 By

It was bittersweet, that freezing cold day in February, 2003.

I was at a conference with a number of my co-workers, which really meant that I was subjected to a day of boring talks that I had to pretend to be utterly fascinated by. The trade-off was the free lunch, and I have to give the conference venue credit: it was outstanding grub.

After lunch, we had a bit of free time before the session reconvened. I decided to check the messages on my cell phone, so I turned it on and started fiddling with the buttons to get to the voicemail. When it vibrated in my hand, I almost jumped out of my skin. The incoming call was coming from a number I did not recognize.

Gerard, calling from a payphone. At the hospital, of all places.

He was calling to deliver bad news: his dad had been diagnosed with colon cancer. There was a possibility that it had spread to the liver. Tests were underway to find out.

I whispered a few words of explanation into the ear of one of my colleagues and ran to my car. An hour later, I was giving my father-in-law a hug at the hospital. He was looking remarkably cheerful for someone who had just received dire news. Either he was using humour as a coping mechanism, or the doctors had done a really good job of giving him hope.

Much later that night, Gerard and I left the hospital and went home. While he was Googling something-or-other, I locked myself into the bathroom and surreptitiously peed on a stick.

Three minutes later, the stick told me that while one life was fading away, another one was just beginning.

At our first ultrasound a couple of weeks later, we held hands as the technician showed us our baby on the monitor. His heart was beating solidly; and even though he was about the size of a grape, we could clearly see his little legs waving around.

Everything looks great, the technician told us. This is a good-looking baby.

Gerard and I finally allowed ourselves to feel a lick of hope for the first time since we found out we were having a baby. We had suffered a miscarriage several months previously; we had not really trusted that we would actually get to the point of seeing a healthy baby. We had several weeks to go before we would pass the point at which our previous pregnancy had failed, and we would hold our breaths until then. But seeing a strong, healthy baby was something that we had not experienced.

After the ultrasound, we drove straight to Gerard’s parents’ home to see them. Now that we had gone through the ultrasound, we felt OK about telling them. We showed my father-in-law the ultrasound picture, and said to him, “If the baby is a boy we’re going to call him George, after you.”

With his eyes flashing with humour, my father-in-law said, in his characteristic Irish brogue, “Aaaah, don’t do that to the poor child!”

Less than a month later, I stood in the cemetery with snow swirling around me as my father-in-law was laid to rest. As I said goodbye to one George, my hands protectively cradled the belly in which another was growing .

As one life ends, another begins. And the spirit of the old lovingly watches over the soul of the new.

(Photo credit to the author.)

Filed Under: Baby, Cancer, Death, life, Pregnancy, Pregnancy Loss, Ultrasound Tagged With: , , , , , , , , , ,