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Things That Go Bump In The Night

January 6, 2011 By

When our kids were young, all of the experts, books, websites and other parents advised us to establish a consistent bedtime routine.  It took a little bit of time a couple of months four and a half years for us to come up with a routine that works for everyone, and usually bedtimes in my household are fairly uneventful.

Most days the kids will take a bath (I am one of those bad, bad Moms who does not bathe her kids every single day).  On the other days, they take turns in the bathroom to pee, brush their teeth, and wash their hands, faces, and any other parts of them with obvious dirt smears.  They get milk, each boy gets to pick one book for the bedtime stories, and then they are allowed to snuggle on the couch with their Dad for a few minutes.

By the time those few minutes are up, James is very often asleep.  I carry him to his bed – a task that is getting more and more difficult as he gets more and more long and lanky – and if he is still awake I lie down with him for a few minutes and tell him a story about a magic horse I invented that takes James to all kinds of wonderful places.

While this is going on, Gerard is tucking George into his own bed, and when I am done with James, I go in to spend a few minutes with George. He always wants me to stay for longer than I do, but I am always mindful of all of the nightly tasks still waiting to be done. I hug George and give him a few minutes to engage in one of his favourite activities: playing with my abundance of hair. We always have the following dialogue, without fail, every single night (bear in mind as you read this that any dialogue for this mostly non-verbal child is a miracle):

Me: George, who does Mommy love?
George: You love George.
Me: Who does George love?
George: He loves Mommy.
Me: Are you tired?
George: Yes.
Me: Are you ready to go to sleep?
George: Yes.
Me: Goodnight, George.
George: Goodnight, Mommy.

And with that, I give him a kiss, slip out of his room and let him drift off to sleep.  He usually migrates to our bed in the early hours of the morning, and we let him.  One day he’ll grow out of that and we’ll miss these days, so we enjoy it while we can.

Last night, the routine went smoothly enough.  I had my miracle dialogue with George, left his room, and started making sure the boys’ backpacks had what they needed for their respective school days.  All of a sudden, I heard the following from the direction of George’s room:
*Thump* (George flopping himself out of bed and onto the floor)
*Scream* (frustration)
*WHUMP WHUMP* (George banging his head on the wall. Hard enough to dent the drywall)

Oh dear.

I returned to George and calmly made him get back into bed.  As I was trying to settle him, James suddenly appeared by my side crying about how he didn’t feel like being alone.  This was a tricky situation to be in.  Usually, when both boys need me, I simply lie down between them and comfort them at the same time.  But when George is in a state where he is hitting his head off the wall, I need to keep James away from him, otherwise James becomes the target for headbanging.

This was one of those times when I had to send James back to bed crying so I could make sure George was safe.  I always feel truly horrible when I have to do that.  I feel so bad for James.  But sometimes there just isn’t any other choice. It is part of the life and times of special needs parenting.

I got George calmed down – or so I thought – and went in to see James.  I hugged him and comforted him, and told him I loved him.  Sometimes, I said, I have to make sure your brother isn’t getting hurt.  Sometimes I have to make you wait, and that makes you sad, and I am really, really sorry.  But I love you so much and I’ll always take care of you, and I think you are a wonderful boy.

James was content.  He sighed softly and went to sleep.  Just as I was leaving his room, I heard the *thump scream whump whump* from George’s room again.

What, are they trying to tag-team here?  When one stops the other starts?  Can they sense my stress and exhaustion?  Is this that thing that animals do, where they go after the weakest member of the herd?

I am afraid to say that my patience ran out.  I did not go in to George.  I did not hug him or talk to him or try to settle him.  From where I was, I called out angrily, “Get back into bed!  That’s enough!”

There were a couple more screams and one more head-meets-wall incident.  After that, things got quiet and both boys slept through the night in their own beds.  I wasn’t woken at four in the morning by George climbing into bed beside me and wrapping his arms around my neck.  A bittersweet feeling, that.

The logical, rational part of me feels that I did the right thing by not rewarding the second incident of headbanging.

But the Mom in me – the one with a heart full of love for her kids – feels horrible that the last thing my sweet George heard before going to sleep was the sound of my angry voice.

Sometimes, no matter what we do, we feel that we just cannot get it quite right.

Photo credit:  Flickr Creative Commons Attribution License

Filed Under: autism, Children, family, parenting, postaday2011, Siblings, sleep Tagged With: , , , , , , , ,
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All We Need Is A Reason

November 17, 2010 By

This morning I woke up early and went to the gym for a rare run on the treadmill.  As a general rule, I am not fond of treadmill running.  It makes me feel a bit like a lab rat, or a hamster running in one of those little wheels.  You never actually go anywhere. You don’t feel the freedom of the open road.  It all seems a little pointless, like tofu or decaffeinated coffee.

On the odd occasion, though, a treadmill workout is better than a road run. This can be true from a circumstantial point of view (you’ve woken up with sore knees and you need to run on a surface with some give; you’re tired and cannot be bothered to map out a route; the weather outside is frightful and you cannot find your balaclava or your will power).  A treadmill run can also be beneficial from a training perspective, especially during the winter.  It can be kind of difficult to do a tempo run or speed reps outside when it’s snowing and there’s a gusty wind blowing.  Far better to head to the gym where you can focus on maintaining 5:30 minutes per kilometre without stressing about snow, wind, ice on the sidewalks, or the fact that it’s dark and you look like a burglar.

So anyway, I went for my treadmill run and worked up a good sweat.  I had some anxiety to work out of my system, so I really belted it, clocking 5km in 24 minutes. Feeling a lot better and pleasantly loosened up, I returned home, where everyone was still asleep.  Before taking a shower, I checked on my boys.  At some point during my absence, George had crawled into bed beside his little brother, and the two of them were sleeping peacefully, James clutching his stuffed giraffe, George with arm over James’ shoulders.  It was one of those moments that reminds me of why I love being a mother, and why, in fact, I was running on the treadmill at such an ungodly hour in the first place.

It is so weird to think that two years ago, I could barely run around the block. I had been bitten by the running bug previously, of course, but after seven years of no exercise my lifestyle was decidedly sedentery. I was decidedly unhealthy, and my clothing was decidedly tight.  I had tried, over the years, to make comebacks to the world of running, but there was always something that stopped me. Injury, illness, lack of time. When it came down to it, though, all I lacked was the right motivation.  When I got that email from the Geneva Centre for Autism back in April 2009, inviting me to join their team for the upcoming marathon/half-marathon/5km Charity Challenge, I knew instantly that I had finally found a reason to get with the program, and to stick with the program.

Initially I considered the 5km event.  After all, I hadn’t run in seven years and I was about seventy pounds overweight. And the event was just six months away. But the little voice in my head that never shuts up until it gets its own way piped up and chanted, “Half-marathon! Half-marathon! Half-marathon!” And before I knew it, I had clicked on the link in the email and signed up for the half-marathon. Six months later, I stood at the finish line somewhat stunned by the fact that in just half a year I had shed sixty pounds, gotten myself into some semblance of “shape”, and completed a half-marathon.

A year further down the line, I have run several races and two more half-marathons.  Another two are planned for 2011, and my comeback to running is now firmly established.  All thanks to those two little boys who were snuggled up together this morning, sleeping beside each other, making me feel like the richest person on the entire planet.

Have you ever done something that you thought would be beyond your limits?  What motivated you, and what helped keep you going when things got tough?

(P.S. My first post for World Moms Blog was published today.  Check it out:
http://worldmomsblog.com/2010/11/17/little-brother-big-hero/)

Filed Under: autism, Children, family, fundraising, parenting, running, Siblings Tagged With: , , , , , , , , , , , ,
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The boys and the bees

July 29, 2010 By

When I got home from work on Tuesday, my younger son James greeted me at the front door with a blue face. It wasn’t that he had used his face as a Magic Marker canvas.  It wasn’t that he’d eaten a cupcake with blue icing, resulting in blue smudges around the mouth.  It was that he’d been on a field trip to the park and had his face painted as Blue, of Blues Clues fame.  It looked really cute, but it can be disconcerting to get home and find your second-born looking like a goofy psychadelic blue dog.

About half an hour later, James got tired of having a blue face, and he asked me to wipe it clean for him. I checked on George, who was running around in the back yard, and then, armed with a wet cloth and a four-year-old, I sat on the couch. I’d gotten about halfway through the clean-up job – meaning that James now looked even weirder than he had to begin with – when I heard a shrill scream coming from outside.

Seconds later, George came tearing into the house and launched himself onto the couch, still screaming.  I was suitably alarmed.  My husband flew out into the back yard to make sure there were no psychopaths lurking there, and I started checking my son for blood and broken bones.  Initially I didn’t see anything wrong, and the only indication of a problem was George’s ear-splitting screaming and frantic hand-flapping.  I tried to ask him what was wrong, but I didn’t really expect an answer out of him. Child with autism, limited verbal skills at the best of times, and in an absolute state – talking was not going to happen.

Suddenly he started scratching his legs frantically, almost manically. He scratched so hard that he actually drew blood.  That’s when I saw the bee stings – two of them, one on each leg. His first bee stings – no wonder the poor child was so upset.  I’ve tried to teach him basic safety, of course, but I’ve focused on things that posed an immediate threat. Crossing the road without looking. Touching a hot stove. Stranger danger. Internet safety. Somehow, the subject of bee stings has never really been a priority.  And so, in his understanding, he was playing outside and suddenly experienced unexplained pain in both legs. Add to that the physical hypersensitivity that is part and parcel of his autism, and we have a picture that is not at all pretty.

I did the same thing I always do when George is freaked out about something.  I opened my arms and wrapped George in the biggest hug I could. My heart twists when either of my kids is in pain, and sometimes a hug is the only thing that will help them. In the case of George, the deep pressure of a hug is physically soothing.  It makes him feel grounded and secure; it helps the panic abate.

Little by little, the screams got softer and then petered out. The crying was gradually replaced with quietness punctuated by an occasional sniffle. George was still trying to scratch his legs, so I didn’t release my hold on him.  A bottle of anti-itch lotion appeared from somewhere. I applied it, which involved a whole new struggle. In the meantime, James, who had initially been a bit put out by the abrupt shift in attention, declared that he was the doctor and he would take care of George. He’s very sweet that way, James is. When George is upset, James always wants an active part in caring for his brother.

Later in the evening, when relative calm had returned to the household, I was moving around the kitchen in a bit of a trance, preparing dinner and lunches for the following day.  I was startled out of my reverie by a loud clatter-bang-bash-shriek coming from the direction of the stairs.  Initially I thought one of the kids had accidentally dropped something down the stairs.  It wouldn’t be the first time: on many occasions, we have discovered that Lego or Thomas the Train characters make a very loud noise when dropped down a set of hardwood stairs.  This time, however, the howls of outrage were my first clue that something was wrong.

It was James. He had tried to bring down the stairs, in one go, Lightning McQueen, Doc Hudson, Mack, Sally, Mater, the Sheriff, Fillmore, and the Dinoco helicopter (anyone with a son under the age of ten will know who these are and what James’ current obsession is).  Because he was carrying so much stuff, he was not able to hold the handrail, and because he was wearing socks, he slipped on the hardwood.

At the end of the day, both of my boys were fine.  George wasn’t allergic to bees and James didn’t have any broken bones.  The only real casualties – apart from the bees that died while stinging George – were my nerves and my blood pressure.

Filed Under: Accident, Children, parenting, Siblings Tagged With: , , ,
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He ain’t heavy, he’s my brother

April 23, 2010 By

My boys have fallen into a new sleep routine.  At bedtime, we do all the stuff we always did.  They get their jammies on, use the bathroom, brush their teeth (most days they have a bath earlier in the evening).  For story-time, I sit on my glider chair between their beds – the same glider chair that saw me through countless night-time feedings when my boys were infants.  George gets right into bed, James curls up on my lap, and they each drink their milk while I read a story (current flavour of the day: anything to do with Thomas the Train).  After the story, James gets into his bed, each of them gets sip more milk, and the lights go out.

About five minutes later, we usually see a little face quietly peeking around the corner: George, trying to sneak onto the futon we have in our living room so he can watch TV.  Or maybe he just wants the extra hugs we always give him, because once we’ve hugged him he goes back to bed amenably enough.  At some point during the night, usually fairly early on, he migrates to the sofabed in the playroom, and sleeps there for the rest of the night.

Sometimes I worry about this.  From time to time, when one of the kids is having a hard time, I have to sleep on the sofabed with said kid, and that thing ruins my back.  I always wake up the next morning feeling as if I’ve been tortured by Vikings.  I worry about whether the sofabed is doing to George’s back what it’s doing to mine.  But once he’s there he won’t budge, he sleeps soundly, and he wakes up cheerfully enough.  So maybe he’s OK and I just need to chill out a little instead of finding yet another thing to be perpetually stressed about.

In the meantime, James is sleeping soundly in his own bed.  He’s a little champion at bedtime, James is.  Once the lights are out he goes right to sleep without a fuss.  He usually wakes up in the middle of the night, though – sometime between midnight and three in the morning.  When I found out the reason for his nocturnal awakenings, my heart soared: he gets lonely for his big brother.  He makes his way to the sofabed, climbs in beside George, and goes right back to sleep.  George surfaces just enough to shift to make room for James, then he goes to sleep as well.

I am always the first one in the household to wake up in the mornings.  Some days – like today – I go for an early morning run.  Other days, I like to get dressed, pour out a cup of coffee, and have some me-time at the computer reading emails or playing meaningless games on Facebook.  I love carving out that time for myself in the mornings, before the rest of the world wakes up.

Whatever I am doing – running or playing on the computer – the first thing I always do is check on my boys.  I go to the playroom and watch them sleeping peacefully, each completely at ease with the other’s presence.  They look cosy and comfortable, like a pair of sleepy kittens.  There is always physical contact between the two: James’ hand resting on George’s, or George’s hand lightly touching James’ shoulder.  When I checked on them this morning, George’s arm was flung over James’ shoulders.  It looked big brotherly and protective.

I savour those moments as I watch them and wonder what dreams are going on in those little heads.  Even though they are sleeping, I feel as if I am witnessing a moment of special connection between the two brothers.

Filed Under: family, Siblings, sleep Tagged With: , , , ,
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World Autism Awareness Day

April 2, 2010 By

Today is World Autism Awareness Day.  This is the day to reflect on people of all ages who are touched by autism.  Wherever they happen to be on the spectrum – whether they are verbal or not, high- or low-functioning – they are important members of society.  They deserve love, respect, admiration for all they have to live with and overcome, and opportunities.  Autism manifests in countless ways.  There are probably as many forms of autism as there are autistic people.  Some auties talk, some don’t.  Some have enough capacity for academic learning to complete high school and go to university, some don’t.  There are auties who are brilliant artists, some who are mathematical whiz-kids, photographers, musicians.  Some become famous.  Some don’t become famous, but manage nevertheless to carve niches for themselves in the communities in which they live.

We had a very good World Autism Awareness Day.  It started with George requesting and wearing a pair of shorts instead of the long pants I had selected for him.  Traditionally, George has a hard time with the transition of seasons.  If he’s used to wearing winter clothing, he doesn’t want summer clothing.  If he is used to shorts and T-shirts, he will not wear winter clothing until he has experienced the freezing cold weather for himself.  So the fact that he transitioned so seamlessly into summer clothing is a big deal indeed.

Once we were all dressed and ready for the day, me, my mother-in-law, and my friend Fran sat at the kitchen table chatting and having a lazy morning.  James was playing with his cars, George was wandering around the room, not really doing anything.  Gradually, we became aware that he was counting while he was wandering.  So far, not really a big deal.  For a long time, George has been rote counting, and even doing mathematical sums, but it’s never really been applied to the real world.  This morning, however, we realized that there was a purpose to his counting.  He was counting how many chairs were in the room, how many tables, how many cups were on the table.  Instead of rote counting, he was counting groups of objects.  He was using the concept of counting for something real.

While I was still celebrating this very meaningful accomplishment, George paused his constant activity to tug at my sleeve.  “Let’s sing O Canada”, he said.  And he started singing our national anthem.  Admittedly, he wasn’t word-perfect, but he did really well for a six-year-old, especially one with autism and limited verbal skills.  He sang sweetly, with lots of heart.  He made me proud to be Canadian, and proud to be his Mom.

Later in the day, we went to the park.  I sat on a bench watching my boys running and playing, I pushed them on a swing and showed James how to go down the fireman’s pole.  I laughed as James grabbed a handful of leaves and dumped them over George’s head, and I smiled when they insisted on holding hands with each other for the walk home.  It was a perfect brotherly moment for the two boys.

And so I wrap up a wonderful day, and I prepare for tomorrow’s 10km race.  I am eagerly looking forward to the race.  It will be a significant and exciting step in my quest to run for autism.

Filed Under: autism, parenting, Siblings Tagged With: , , , , , , , ,
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Never forget the siblings

March 29, 2010 By

As I work towards my Run for Autism, my inspiration is George.  He’s the only member of my family – either immediate or extended – who has been touched by autism.  I could go on all day about his challenges, his strengths, and the fact that what most “typical” parents see as minor developmental milestones are, to me, gigantic accomplishments that make me want to jump for joy.  I am in the process of starting to work with a holistic lifestyle coach named Brandon: the first time I spoke to him he told me that while parenting in general is equivalent to a full-time job, parenting a child with autism is equivalent to an additional full-time job.  It makes sense.  I have to maintain two completely separate styles of parenting for my two children, because what works for one definitely would not be appropriate for the other.

And in this sense my Run for Autism is inspired not only by my autistic son George, but also by my neurotypical child James.  James, in addition to just being James, a unique individual in his own right, is also the brother of an autistic child.  Although he is chronologically the younger of the two, in most senses he is actually older.  He has the verbal skills, the social skills, the adaptive skills that his brother does not have.  There are times when he is called upon to understand the kinds of things that kids his age shouldn’t have to worry about.  He has a very strong sense of what is and is not fair, and when George’s autism leads to us reacting in a way that James perceives to be unfair, it can be very hard for his four-year-old mind to process.  Being the sibling of an autistic child cannot be easy.  And so when we do something to improve the lives of autistic children, we are also by extension doing something to improve the lives of their siblings.

We are very fortunate that James is the kind of child that he is.  He is a highly verbal, very social child.  He has opinions and he’s not afraid to express them.  Although there is definite sibling rivalry, James adores his big brother.  If he is given a cookie, he requests one for George.  If we do something simple like take George’s hat off his head in a playful moment, James will get upset and demand that we return the hat to its rightful owner.  When George is having a meltdown, James feels sad and says things about how he will take care of George.  He has never used the word “autism” in relation to George, but he is aware of George’s disability. Based on his character, both Gerard and I believe that James will grow up to be friend and advocate to his brother.

I frequently worry about whether I am doing right by James.  So much of James’ life is shaped by George’s autism.  A simple example is Mr. Potato Head.  George loves Mr. Potato Head.  He has about twenty of them, and he has to know where they all are at all times.  If anyone touches his Mr. Potato Heads he gets very upset.  Any Mr. Potato Head that enters the house is automatically deemed to be George’s property.  There have been times when James has tried to play with a Potato Head, and he’s been prevented from doing so, either by George himself or by parents who are too frazzled to deal with a meltdown.  Over time, James has been conditioned to not play with Mr. Potato Head.  I have no idea whether he’d like it or not, and I feel oddly sad that we’ll never find out.  Another one like that is Lego.  We tried getting James Lego that is different in appearance from what George likes, but we have had limited success.  James will still make the occasional attempt to play with Lego, and if I happen to be around, I play with him and fend off George’s intrusions.

I sometimes wonder whether James’ passion for trains and cars is genuine, or if it’s just something he has gravitated to because George isn’t really interested in them.  When these thoughts start troubling me too deeply, I console myself with the knowledge that James truly does love his cars and trains and gets a lot of joy from them.

What I really want to convey is this: autism does not only affect the individual diagnosed with it.  It touches every member of the family.  The autistic child is not the only one who needs special care and attention.  We must never forget the siblings.

Filed Under: autism, family, parenting, Siblings Tagged With: , , , , , , , , ,
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Who am I and what am I doing here?

March 17, 2010 By

I sometimes tell people that I am a normal mom – overworked, overextended, overscheduled, and overwhelmed.  But in my household, we use the word “normal” very loosely if at all.  For a start, I’ve never really believed in the concept of “normal”.  It’s too subjective – one person’s “normal” is another person’s “what the hell is going on here?!?”  And the fact that one of our children has special needs throws a wrench into the whole idea of normality anyway.

To start from the beginning: I am a transplanted South African living in Toronto, Ontario.  I proudly became a Canadian citizen three months ago, on the same day – indeed the same ceremony – on which my partner of eight years proposed to me.  Gerard and I have two children together.  George is six years old, and if I were asked to describe him in one word, that word would be “sweet”.  He may be autistic, but he is such a sweet, gentle soul.  He is touched with a kind of grace that is impossible to put into words.  His mind goes to places that are unreachable to the rest of us – these places are sometimes frustrating, both him and to his family – but at times he is so present, so with us.  He does not talk much and has a lot of trouble with social engagement, but he is a smart kid who can read (although not necessarily comprehend), count, add, and write his own name.  He is full of love.  He is never short of a hug for his family, and has a healthy level of sibling rivalry with his younger brother James.

To describe James, I would use the word “dynamite”.  James is four, and depending on your own personal views, his Christmas Day birthday can be seen as either a blessing or a curse.  We ensure that he gets his full quota of attention by throwing half-birthday parties for him in the middle of the year.  James is loaded with energy.  You know those cartoons in which a series of streaking white lines depicts a character running by so fast that you cannot see him?  That’s James.  The kid never stops.  He approaches life in the same way a bull approaches a china shop – as several visits to the Emergency Room over the last four years will testify.  He is always busy, always talking a mile a minute.  He gets into spats with George, but he is also a wonderful little brother.  He is considerate of George’s challenges – not because he has to be, but because he wants to be.

I am lucky to have Gerard.  He is a truly wonderful father to the boys.   We have been through some very hard times – so hard that at one point, we didn’t know if we would make it.  But we have gone through the fire and survived – and we now know that there is nothing we cannot work through.  We are planning next year’s wedding with lots of excitement and anticipation.  Although getting married isn’t going to change anything in practical terms, it will be symbolic of a new and wonderful stage in our life together.

My passion – apart from my family, that is – is running.  I used to run years ago, but having kids put a kaibosh on that for many years.  For ages, I tried to get back into it, but there was always a reason why I couldn’t.  Then, about a year ago, the right motivation came in the form of an email.  The Geneva Centre for Autism was entering a team in a major Toronto running event.  Parents were invited to register for the race and raise pledges.  All funds raised would go towards providing services for autistic children and adults – people like my son George.

Wow.  An opportunity to do something for my son.  As soon as I saw this email, I knew that I had finally found the reason that I would not give up.  Although I could barely run around the block at the time, I signed up there and then for the half-marathon, six months away.  For the next six months, I trained and rediscovered my love of the sport.  And on September 27, 2009, I stood at the finish line with a finisher’s medal around my neck and a village-idiot grin on my face.  My legs were screaming, but every other part of me was on an incredible emotional high.  I had done it.  I had run this race for my child.  And I knew I was going to be back.

The Geneva Centre is entering a team for the 2010 event, and I have already signed up for the half-marathon.  I am just emerging from three months of illness and injury, but my training is already getting back on track.  I have a busy racing season ahead of me, starting with a 10km event on April 3rd.  All of the training, all of the races that I participate in over the summer, will lead up to this one event – my run for autism on September 26th.

Follow me as I go through the trials and tribulations of training, the early morning solitary runs in the dark, the long Sunday runs with the sun beating down on my shoulders.  Moan and groan with me as I massage my aching muscles, and stand with me at the finish line as we celebrate a triumph for autism on the day of the race.

Filed Under: autism, family, fundraising, parenting, running, Siblings Tagged With: , , , , , , ,
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