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The Meaning Of Friendship

April 15, 2011 By

When George was a newborn, I joined an online group for parents of living children who had also experienced pregnancy or infant loss. Having gone through two pregnancy losses, I was paranoid about everything connected with my new baby. Did those sniffles indicate a cold or something more serious? Why wasn’t he nursing? Was that little bump to the head going to cause permanent damage? Was I actually going to be able to keep this tiny scrap of a human being alive?

In the online group, I found a home – a group of women whose experiences, while all very unique, gave us a common ground. We consoled and comforted one another, offered advice and reassurances, laughed and cried with one another. We became friends. And as you find in any group of friends, there was drama. We had disagreements and conflict. Some people left never to be heard from again, others left and came back.

Seven years on, the core group of us are still friends. The online group itself is not as active as it once was, because most of us are friends on Facebook, and we communicate that way. But we are still as much of a support for one another as we always were. Through seven years (and in some cases, more), we have seen each other through births and deaths, marriages and divorces, relocations, bankruptcies, illnesses, post-partum depression, and even a prison sentence. We have been there for each other through everything.

In 2007, George was diagnosed with autism. As I dealt with the implications of this, including my own emotional fallout, my girls were there for me. Their love and support helped keep me buoyant at a time when it would have been so easy to drown. These amazing women, who had already helped me stay sane through relationship and financial problems, the loss of my father, and my pregnancy with James, once again banded together to help me cope.

And then, a little over a year ago, I found another online group of friends – these ones parents of children with autism. They wormed their way into my heart in the same way my first group had. Although the general conversations centre around different issues, the sense of love and support is present in both groups. My autism friends have been part of my life for substantially less time, but they have helped me over so many hurdles. They tell me I’m a good Mom when I’ve struggle to deal with George’s behaviours. They celebrate with me when he achieves a milestone, and they commiserate with me when a stranger in a grocery store says something ignorant about my child.

Both groups of people are brutally honest in their opinions. They have the strength and the integrity to tell me what they really think, instead of telling me what they believe I want to hear.

From the two groups combined, I have met exactly three people in person.

Occasionally, someone makes a distinction between online friends and IRL (“in real life”) friends. To me, there is no such distinction. Just because you communicate with someone primarily through email or Facebook, that doesn’t mean they are any less real. The only word in the equation that means anything to me is “friends”. And that is truly what these people are. I cannot imagine my life without them. I do not know how I would have weathered the storms of the last few years if they hadn’t been there to keep me afloat and give me reality checks when I needed them.

This post is dedicated to my friends at PALC_group and Parenting_Autism. Thank you for being the wonderful people you are. I love you all.

(Photo credit: http://www.flickr.com/photos/ilamont/4329364198)

Filed Under: autism, Friendship, life, parenting, Pregnancy Loss Tagged With: , , , , , , , , , , ,
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Wedding Planning Worries

March 19, 2011 By

I have discovered an odd parallel between wedding planning and parenting. With both, you always have something to worry about, but the particular worries change and evolve depending on what stage you are in.

For instance, I look back on the day I first brought George home from the hospital. There I was, a new Mom with this ridiculously small human being who looked so fragile. I was terrified that I’d break him, that something bad would happen just because I didn’t have a clue what I was doing.

When it became apparent that I actually had the ability to keep him alive, I started worrying about different things. Was he sleeping enough? Was I feeding him the right stuff? What did that rash on his face mean? How did I know whether or not to worry about a fever?

Then James came along and brought with him a whole new set of worries. Now, I worry about stuff like sibling relationships, whether the boys are happy at school, and how to keep up with the fact that they seem to outgrow their shoes within the first ten minutes of owning them.

A year from now, I will no doubt be stressing about something else.

It’s been much the same with my wedding planning.

Right in the beginning, I was focused on getting the reception hall booked. I figured that as long as we had a place to party, nothing else would really matter. It took us a long time to commit to a hall, and throughout the whole selection process I was stressed to the hilt and being pulled in different directions by different people who wanted different things.

The moment we paid the deposit on the hall, a weight lifted from my mind. But soon another one settled there: the weight regarding my dress. A long story, the dress was. It involved a promise from my soon-to-be mother-in-law to make it, a retraction of said promise, and an argument before the promise was reinstated. There were discussions about whether or not I would wear a veil, and these discussions were more heated than one might expect.  Eventually, my wishes prevailed (and why shouldn’t they?) and it is now known by all concerned that I will not be wearing a veil.

Then I started to panic about the shoes. I had to go on several shoe-shopping trips, and I hated every one of them, because – well, I hate shoe-shopping. Just as I was starting to think that I would have to wear my battered running shoes to my wedding, I found a pair of shoes that I love.

Okay. Deep, soothing breaths.

When the shoes were sorted, it was time to worry about the guest list and the invitations. This caused me no end of stress. Initially I was going to keep it simple. I got plain but elegant stationery to print the invitations on, I had the invitations designed and I was just about to print them when…

…the hub-to-be announced that we should have a theme for the wedding.

It’s a great theme, I have to confess. I’m glad we’re going with it. But it meant that we had to change what we were doing with the invitations, and as a result they went out ten days later than I would have liked. But they went out, and all credit to Gerard, they are really nice.

We have a makeup person.

We have a DJ.

Everyone’s clothing has been sorted out.

Now, I guess because I actually have the time to worry about it, I have a new worry.

Who is going to do my hair?

I already know what my next worry after this one will be, but for now, I’m going to focus on the hair.

I can only worry about one wedding-related thing at a time, otherwise my head might just implode.

(Photo credit: http://www.flickr.com/photos/saffy_suppi/4958417528)

Filed Under: parenting, Wedding, Worry Tagged With: , , , , ,
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Sick Child, Sleepless Night

February 8, 2011 By

When you receive a call from your child’s daycare that includes the words “vomiting” and “diarrhea”, you know your day is about to take a nosedive.

Yesterday morning, I arrived at work and went straight into a meeting without even going to my desk first. After the meeting, I returned to my desk and saw the message light on my phone blinking. Three new messages. All of them from James’ daycare teacher, asking begging for someone to pick him up and take him home.

This was a problem for me, since I was sitting in my office at work, more than an hour away by public transit. I called my mother-in-law, who is listed on James’ paperwork as a designated pick-up person. She didn’t answer her phone. I called Gerard, whose place of business is ten minutes’ drive away. He didn’t answer his phone. For about twenty minutes, I was frantically calling the two numbers in turn, picturing my poor child huddled over miserably at the daycare. In the end, my mother-in-law picked him up, and took care of him for the day until Gerard and I were able to get home.

During the night, things got really rough. Right before bedtime, James twisted around to throw up again, into the plastic basin that he had placed beside him. As he twisted, he dinged his knee very hard on the metal frame of the futon he was lying on. All of a sudden, his knee was as much of a problem (although a less messy one) than the fact that he was sick.

He was crying because his stomach was hurting. He was crying because his knee was hurting. He was crying because he felt bad about messing up his clothes. He was crying because he was hurting with thirst and couldn’t keep anything down.

My poor baby.

I lay down with him and tried to sleep.

That didn’t work out too well. During the night, there were two episodes of vomiting and one of diarrhea, along with many, many cries of pain because of the sore knee. I iced and bandaged the knee, and that seemed to help. I dressed James in clean pyjamas, and that made him feel better. I gave him sips of flat Coke, and he managed to keep that down.

Finally my boy went to sleep.

I did not. By now my mind was racing a million miles a minute. I was thinking of anything and everything. Rest was out of the question. Finally, at around 6:00 a.m., I fell into a fitful sleep, only to be woken up half an hour later.

Going to work today was out of the question. James, while a lot better, needs to be at home, and he needs his Mommy with him. Meanwhile, Mommy’s brain is in a complete fog. I tried to do some work from home, but in the end, I decided to take the day off. Work in any reasonable form was just not going to happen today.

On the bright side, we have had about seven hours now with no throwing up, and about five hours with no diarrhea.

Things are looking up.

Filed Under: Children, Illness, parenting Tagged With: , , , , , , , , ,
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The Parent Who Disappointed

January 31, 2011 By

This weekend I had the dubious distinction of being The Parent Who Disappoints.  It’s not a nice feeling, I tell ya.  In fact, it’s downright awful.  I feel like someone’s reached down into my throat and twisted my heart around when I see my five-year-old son standing in front of me with fat tears rolling down his cheeks because of something I’ve done.  Or in this case, failed to do.

James was supposed to go to a birthday party on Saturday afternoon.  The party was being held for a little girl who goes to school and daycare with him.  She is a really, really lovely child with equally lovely parents.  James was excited about going to the party, but the catch was that I would have had to stay at the party with him. He’s not ready to be left without either of his parents at an unfamiliar house (and frankly, I’m not ready for it either).

It’s not that I mind staying at these parties.  In fact, I kind of enjoy sitting there chatting with the other parents while our kids run around and play.

On Saturday, though, I was sick. I was streaming with a cold, using up Kleenexes at the speed of sound, inhaling cough drops like they were Smarties, and feeling as if my head was about to explode.  And by Saturday afternoon I had started developing pink-eye, and my eyes were oozing in a very unsavoury manner.

Would you have wanted me hanging out in a house full of moms and kids in that condition? Would you have even wanted me driving in that condition, with my eyes pretty much sealed shut with gunk?

Gerard was not able to go, because he had an appointment with a client at work.

Gerard’s mom, the only other possible candidate, was at a funeral.

It fell to me, in my sick, dreary state, to break the news to James that I would not be able to take him to the party. James was not angry, and he did not throw a tantrum.  He just started weeping in a very, very sad way.

Now, in addition to being as sick as a dog, I felt like a piece of crap parent. I felt so sad for my little guy that I started to weep myself.

Just in case you were wondering: crying when you have pink-eye is not a good idea.

I apologized over and over to James.  I explained to him the dual problems of putting everyone at risk of illness and not actually being fit to drive.  Later, he assured me that he understood and that he didn’t hate me.  But still.  I felt horrible for disappointing my baby.

I asked him what I could do to make it up to him, and he said he’d like a birthday party of his own.  This works for me – I have plans to throw him a party anyway – but his answer has prompted me to step it up a notch, to make a supreme effort to provide him with a special day. He wants to have his party at an indoor playground, and he wants a Lightning McQueen cake.  I’ll provide him with a Lightning McQueen cake if I have to go all the way to Radiator Springs to get it.

James misses out on a lot. It must be tough for him, being the brother of a child with autism, and the son of a Mom who gets sick at just the wrong time.

The least I can do is give him a day that he can call his own, where he will be the centre of attention.

Filed Under: parenting, postaday2011 Tagged With: , , , , , , , , , ,
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The Parent Who Disappointed

January 31, 2011 By

This weekend I had the dubious distinction of being The Parent Who Disappoints.  It’s not a nice feeling, I tell ya.  In fact, it’s downright awful.  I feel like someone’s reached down into my throat and twisted my heart around when I see my five-year-old son standing in front of me with fat tears rolling down his cheeks because of something I’ve done.  Or in this case, failed to do.

James was supposed to go to a birthday party on Saturday afternoon.  The party was being held for a little girl who goes to school and daycare with him.  She is a really, really lovely child with equally lovely parents.  James was excited about going to the party, but the catch was that I would have had to stay at the party with him. He’s not ready to be left without either of his parents at an unfamiliar house (and frankly, I’m not ready for it either).

It’s not that I mind staying at these parties.  In fact, I kind of enjoy sitting there chatting with the other parents while our kids run around and play.

On Saturday, though, I was sick. I was streaming with a cold, using up Kleenexes at the speed of sound, inhaling cough drops like they were Smarties, and feeling as if my head was about to explode.  And by Saturday afternoon I had started developing pink-eye, and my eyes were oozing in a very unsavoury manner.

Would you have wanted me hanging out in a house full of moms and kids in that condition? Would you have even wanted me driving in that condition, with my eyes pretty much sealed shut with gunk?

Gerard was not able to go, because he had an appointment with a client at work.

Gerard’s mom, the only other possible candidate, was at a funeral.

It fell to me, in my sick, dreary state, to break the news to James that I would not be able to take him to the party. James was not angry, and he did not throw a tantrum.  He just started weeping in a very, very sad way.

Now, in addition to being as sick as a dog, I felt like a piece of crap parent. I felt so sad for my little guy that I started to weep myself.

Just in case you were wondering: crying when you have pink-eye is not a good idea.

I apologized over and over to James.  I explained to him the dual problems of putting everyone at risk of illness and not actually being fit to drive.  Later, he assured me that he understood and that he didn’t hate me.  But still.  I felt horrible for disappointing my baby.

I asked him what I could do to make it up to him, and he said he’d like a birthday party of his own.  This works for me – I have plans to throw him a party anyway – but his answer has prompted me to step it up a notch, to make a supreme effort to provide him with a special day. He wants to have his party at an indoor playground, and he wants a Lightning McQueen cake.  I’ll provide him with a Lightning McQueen cake if I have to go all the way to Radiator Springs to get it.

James misses out on a lot. It must be tough for him, being the brother of a child with autism, and the son of a Mom who gets sick at just the wrong time.

The least I can do is give him a day that he can call his own, where he will be the centre of attention.

Filed Under: parenting, postaday2011 Tagged With: , , , , , , , , , ,
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Make A List, Check It Twice…

January 23, 2011 By

They should provide customized checklists when they issue children to parents.  I mean, think about it.  We pop out these babies, and we follow the generalized instructions in baby books, which pretty much say the following:

  • Whenever the baby cries, shove a nipple in its mouth.
  • Rest when the baby rests.
  • Establish a consistent bedtime routine.
  • Don’t let the baby sleep on his tummy.
  • Cover a baby boy’s willy with a washcloth during diaper changes to avoid being peed on.

There is very little consideration given to the fact that:

  • said nipple is attached to a human being who is capable of feeling physical pain from literally being sucked dry, and besides, baby bites on nipples can really hurt, even when no teeth are present;
  • when the baby is resting, Mom actually has time to take a shower or, you know, eat;
  • babies will throw up on parents who try to impose routines that they don’t like;
  • if the baby is very determined to sleep on his tummy, there’s very little you can do about it;
  • baby boy willies can be very wayward and have a mind of their own.  Kind of like grown-up mens’ willies.

And that’s before you even get into the individual differences between regular babies.  I’m sure new parents would appreciate knowing up front that their child will barf all over their nice new couch, that their daughter will like peas until the age of four and then start throwing them at everyone, and that Junior will be sent to the principal’s office on the first day of Kindergarten.  Don’t you think our lives as parents would be much easier if we knew ahead of time what contingency plans should be made?

Things get even more complicated when you add a child with special needs into the mix.  While I would certainly want the ability to eliminate the things that George finds frustrating or distressing, I would not want to change who he is (who would?  The kid is SWEET!). However, it would have been good to know some things about him right from the beginning.  My checklist for George would include the following:

  • He’s going to bang his head when frustrated, so you are going to have little dents all over your drywall.
  • Baby-proofing devices will not even slow him down, so don’t waste the money.
  • By the time he is five, there will be no such thing as a “good place to hide stuff”.
  • He will find out the password to your YouTube account simply by watching you type it in.  Very visually oriented, these autistic kids.
  • He will be freakishly good on the computer, and he will be counting backwards from 100 in increments of 3 by the age of four.
  • You will need several large boxes to store all of the Mr. Potato Head stuff, but you won’t mind because Mr. Potato Head will prove to be a major catalyst for speech.
  • He will use Lego for stimming.  You will have to make sure you have plenty of the long Lego pieces in pink and yellow.  If you don’t have the same number of pink and yellow Legos, there will be meltdowns.
  • He’s going to know how to fix your DVD player!
  • He’s going to rip down your mother-in-law’s wallpaper and write his name in Magic Marker on her couch.

And what about James?  What would his checklist say?  Let’s see…

  • He’s going to be obsessed with cars so you may as well start collecting them now.
  • He’s going to come flying out like a cannonball at birth and he’s going to just keep going.
  • If he’s anywhere near water and you’re within a thirty-foot radius, you will get soaked.
  • He’s going to go to the emergency room five times in his first four years.  He’ll just be that kind of kid.
  • Don’t let him anywhere near the diaper cream.
  • Don’t let him anywhere near the talcum powder.
  • Don’t let him anywhere near the toothpaste.
  • Be prepared for the fact that he will publicly ask his Granny if she has a willy.

The checklist would also say that the boys will fight like cat and dog but they will be the best of friends, that George will make off-the-charts progress after his autism diagnosis, and that parenting would be the best thing to ever happen to me.

I love my boys.  They are a joy and and adventure.

Filed Under: babies, parenting, postaday2011 Tagged With: , , , , , ,
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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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Give me a place to stand…

November 8, 2010 By

Last week I stepped out of the real world for a few days while I attended the 2010 Geneva Centre for Autism symposium, here in Toronto. It was a phenomenal event – it was much more than I had expected it would be. When the conference ended on Friday afternoon, I literally felt as if I had to step out of a bubble back into my life. But I resumed my life with an altered perspective, and a deep new understanding of my son.

For three days, I was in the presence of true greatness. I had the opportunity to listen to presentations by professionals in the field of autism, such as Tony Attwood and Nancy Minshew.  I heard talks by individuals who have lived with autism themselves, who have made successful lives for themselves – people like Temple Grandin and Stephen Shore. I listened to the beautiful music of two people with autism, Michael Moon and Samantha Mutis, which brought tears to my eyes. I was surrounded by hundreds of delegates – teachers, therapists, other parents like myself – who were all gathered together for the sole purpose of learning how to help and support people with autism, and thereby make the world a better place.

Going into the conference, I expected to learn some new stuff. That was, after all, my reason for going. I wanted to get some insights, hear about new research, learn about possible ways of doing things differently and more effectively for George. Did I accomplish this goal? Let me put it this way. Not only did I learn more about autism than I would have thought possible in three days, I actually feel as if I got to step into my son’s mind. Listening to the speakers, many of whom live their lives on the spectrum, I got to step into the world of autism in a way that I have, until now, not been able to accomplish.

I feel honoured that these individuals allowed me into their world and shared of themselves so freely. These people, for whom life has been a series of challenges that most of us will never understand, have collectively turned me into a better person and a better Mom.  They have, through their willingness to share their experiences and give hope to parents of children with autism, created a landscape in which my son can have a better, more productive, more fulfilling life. What an opportunity that is.  What a gift those people have given to me and my family.  I feel truly blessed to have been there.

I learned that in order to teach social communication, we need to teach social thinking, and that in too many instances we focus on the diagnosis – the word “autism” – rather than on the specific challenges of the individual. I heard about how in all of us – especially people with autism – negative emotions may manifest as anger, and that we should always dig deep and look for the real underlying emotion. I have learned to use the phrases “expected” and “unexpected” when describing behaviour because the terms “appropriate” and “inappropriate” imply a value judgment that doesn’t help anyone. I now know that instead of fighting George’s fascination with garage doors and writing it off as an autistic obsession, I should use it as a stepping stone to help him learn and accomplish new things. And much more.  So much more.  I am still internally processing everything.

I left the symposium with the knowledge that so much is possible. I can see a whole new world opening up for my boy.  It is up to me and Gerard to ease the path for him, to help him see where he can go and what he can achieve.

While I was at the conference, I bought myself a piece of autism awareness jewellery.  It is a chain with a puzzle piece on it, the puzzle piece being the universal symbol for autism awareness. Behind the puzzle piece is a circular disk with a quote engraved on it. The quote is a perfect reflection of the possibilities that lie ahead for George, if he is given the right support along the way.

“Give me a place to stand and I can move the world”  ~ Archimedes ~

Filed Under: autism, parenting Tagged With: , , , , ,
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Mister Fidget

October 12, 2010 By

George has been getting into everything lately.  And I mean everything.  He opens and closes doors, peers into the refrigerator, moves the lever on the dishwasher door back and forth, and sends the blender into a fruitless frenzy of activity. He gets into cupboards and removes things.  He finds stuff that can be poured, and he pours it.  He turns taps on and off. He has succeeded in deprogramming the remote several times. He finds things in squirt bottles and squirts them. He jabs the straw into those little cardboard juice boxes, and then gives an almighty squeeze to see the juice shooting up and hitting the ceiling. The light on the fish tank gets turned on and off so often that the poor fish have probably completely lost any circadian rhythm they had to begin with.

As much as George loves to fidget with things, turn things on and off, open and close things, pour things, he hates it when anyone else does anything. My attempts to cook dinner, for instance, are accompanied by this contant commentary.  Close the fridge. Microwave off. Close the dishwasher. Close the drawer. Close the cupboard. Leave the milk. Tap off. And on and on and on.  While all of this is going on, I’m tripping over a lanky seven-year-old who is darting around the kitchen trying to put things away, close things, and turn things off.

Running the kids’ bath last night was an adventure. James picked out two boats that he wanted to play with in the bath.  He put them in the tub, I started the water running.  I did what I usually do, which is to close the bathroom door and then go off to gather towels and pajamas while the water is running. When I went back into the bathroom a couple of minutes later, the water had been turned off, the tub was empty, and James’ boats were nowhere in sight. James, it must be said, was not at all pleased.

After a brief search, the boats were located in a toy box, and we tried again. This time, James stood guard at the closed bathroom door, like a miniature sentry. Gerard worked hard to distract George, who was repeatedly going, “Tap off! Tap off!” After what felt like seventeen hours but was in reality a couple of minutes, the bathtub was ready, and I turned the tap off.  George was instantly calm.

James was happy. He climbed into the tub and started playing happily with his boats, among the bubbles in the water.  George had kicked up such a fuss that I was not really expecting him to get in. But he ran off to get a few pieces of Lego, which he tossed into the water.  Then he calmly got in, sat down in the water, and played with his Lego.

When compared with a lot of the other stuff I have to deal with on a day-to-day basis, this behaviour is really not that bad. It’s just inconvenient and exhausting to deal with all the time.  There is, however, a giant silver lining to it: when George is engaging in this behaviour, he is a lot more verbal than usual. We are trying to look past the messes and spills, the fact that we have to keep replacing groceries that get poured out, and the general inconvenience of it all, to see the potential opportunities offered by the increased use of words.

Sometimes troublesome behaviour is a predecessor to a giant leap of progress. Even while I complain about the fact that it takes me twice as long as it should to get anything done, I recognize that this could mean exciting times for ourselves, and more importantly, for George.

Filed Under: parenting Tagged With: , , , , ,
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