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A Kind Of Magic

May 20, 2012 By

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

When James was about four, he got himself an imaginary friend. The friend’s name is Albert and his age varies from 3 to 12, depending on the day. According to James’ descriptions, Albert is a yellow monster with tall hair. He stays at home and sleeps while James is at school, and he is responsible for every single mess or piece of mischief-making that we blame on James.

Although Albert the monster features less in James’ incessant chatter these days, he still makes the occasional appearance – inasmuch as an invisible, imaginary monster can make an appearance.

I have come to recognize that Albert has served an important dual purpose in James’ life. First, James talks to him when he’s lying in bed at night, using him to process the events of his day and work through any conflicts he might be experiencing. And second, the monster fuels his imagination. James makes up a staggering variety of monster stories, and it is enormous fun to see where his mind takes him.

Monster hasn’t been around for a few days, but yesterday, someone else showed up.

I was industriously working wasting time on the Internet, and James was dancing around, chattering away to someone or something that only he could see. All of a sudden, he was by my side, telling me about a giant pink rabbit that was bouncing around in the kitchen.

“You should see it, Mommy!” said James, quivering with excitement. “Come on, look at it!”

“But I can’t see it,” I said to him, raising my hands palm-side-up in anI-don’t-know gesture.

Without missing a beat, James said, “Close your eyes and you’ll see it.”

His words instantly infused me with a sense of that childlike magic unique to six-year-olds who still know the true meaning of imagination.

As adults, we only see with our eyes. Most of us don’t take the time to look beyond what is literally in front of us. Children know how to see things with their minds. They can see possibilities of magic where most of us don’t even know there’s anything there. They are the ones who truly have vision.

I did what James suggested. I closed my eyes and really tried to look. And sure enough, there was that giant pink rabbit, dancing around my kitchen.

(Photo credit: http://www.flickr.com/photos/sebilden/3984605154/. This picture has a creative commons attribution license.)

Filed Under: 2012 Wordcount Blogathon, Childhood, Children, Imagination, Vision Tagged With: , , , , , ,
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Emailing The Tooth Fairy

May 11, 2012 By

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

I will never forget the day my firstborn son cut his first tooth. I had been expecting it for so long that I had almost given up waiting. I mean, the kid was eleven months old and we were starting to think he’d be some kind of toothless wonder.

On the day in question, we were at a music industry trade show with my husband. He was in the main exhibition area, doing whatever schmoozing he needed to do with potential clients and suppliers. I was in the large lobby area with George, listening to a music troupe play a set of traditional African music. People were milling around the crowd, handing out free African drums to the kids. The babies, like George, got African rattles: miniature drums on sticks that have beads attached to them by a piece of string.

George was initially non-responsive to this idea, so I accepted the rattle on his behalf. As soon as he saw how it worked, though, he made a grab for it, and as he opened his mouth in delight, there it was. A tiny little pearly white blip peeking through his gum.

He may have been late getting his first tooth, but he certainly made up for lost time. The poor kid averaged one tooth every three days or so, which was not fun for anyone in the family.

A couple of years later, I got to do it all again, this time with my younger son James. I feel oddly guilty that I don’t remember the appearance of his first tooth (masters of guilt, we moms – we outdo even the Catholics in the guilt department). I do remember that James teethed earlier than George had, at about seven months, and his second and subsequent teeth took a lot longer to show up. There was one time, when James had four or five teeth, when nothing happened for about two months, and I was thinking, “Come on, already!”

Eventually my kids each had a full complement of teeth. Now the next inevitable wait began: when would George start to lose his teeth?

His first loose tooth wobbled around precariously for weeks. We were waiting and waiting for this thing to just give it up and fall out, but it hung on stubbornly, seemingly by no more than a thread. Eventually he lost it, the day before he turned seven. He was biting into his sandwich at the centre where he was receiving IBI  therapy, and the tooth just popped out and landed on the table in front of him.

He lost his teeth in much same way he had gained them. Teeth were falling out left, right and centre, and after about a month George looked like a fourteenth-century sailor with scurvy. But with time, the new teeth grew in to replace the old.

At almost nine, he just has a couple more teeth to go. It was initially hard for this sensory-sensitive autistic child to be losing his teeth, but by now he is so used to it that he barely notices it.

When he lost the most recent tooth, there was trouble – not from him, but from his little brother, who is now six. As George wandered around the house looking all gappy-mouthed, I found James weeping quietly in his room.

“What’s the matter?” I asked him.

“George’s tooth fell out and mine didn’t,” he sobbed, as if someone had just stabbed his favourite teddy bear.

“Don’t worry,” I soothed. “Your teeth will start falling out any day now.”

“But I want to have a gap like my brother!”

Try as I might, I couldn’t comfort this kid. I had to let him cry it out. I mean, what was I going to do, yank out one of his teeth?

Three days later, James got his first loose tooth. It hung on for weeks, much like George’s first loose tooth had. For the whole time, James was planning what he was going to do with the money the tooth fairy left for him. To hear the kid talk, you would have thought he was going to get a thousand dollars. I know inflation has hit the tooth fairy since my childhood days, but not quite to that extent.

Finally – finally – the tooth fell out two days ago. It was a near-disaster, though, because James accidentally swallowed it and therefore did not have it to leave for the tooth fairy. Thanks to modern technology, I was able to come up with a mitigation plan: I took a picture of the gap and saved it to my computer. I attached it to a blank email form and told James that if I emailed the picture to the tooth fairy, he would surely get his reward. I even made up an email address. gappysmile@toothfairy.com.

The following morning, James woke up and stumbled sleepily to me while I was getting ready for work, the way he always does. He sat on my lap, and I enjoyed the feeling of him snuggling up to me with his head on my shoulder. All of a sudden, he sat up straight, his little body quivering with alertness. He gasped as if he had forgotten something, and then he slithered off my lap and ran to his room. His eyes were bright with excitement as he ran back to me, holding up the shiny two-dollar coin that the tooth fairy had left under his pillow.

He clambered back onto my lap, and although George’s gaps have long since filled in, James said contentedly, “Now I have a gap. I’m just like my big brother.”

And still clutching his two-dollar coin, he went back to sleep, with dreams of his brother dancing through his head.

Filed Under: 2012 Wordcount Blogathon, Baby Teeth, Childhood, Children, Teeth, Tooth Fairy Tagged With: , , , , ,
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You Think You Know…

May 8, 2012 By

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Today, I am also participating in the WEGO Health True Life Tuesday Blog Party, in which participants start their posts with the phrase, “You think you know, but you have no idea…”

You think you know, but you have no idea.

You look at parents who have special needs kids, and you contemplate the things you think they are doing wrong. Thinking you know better, you utter sentences that start with the phrase, “If that was my child…”

Until you get handed a diagnosis of autism and realize that, wait a minute, that is your child. You find yourself facing the same challenges as all of those parents you used to be quick to judge, and you find yourself responding in very similar ways.

You have no idea what special needs parenting is like until you are wearing those shoes.

Yes, my child has sometimes been the kid having a very loud meltdown in a grocery store.
Yes, I am the mom who has occasionally snapped needlessly at her kids in public, because she was just so overwhelmed.
Yes, I sometimes let my child play on the computer for longer than is considered ideal, because I am so desperate for time to take a shower.
Yes, I do want to get all available services for my child, but that is way easier said than done.
No, I don’t invite my son’s classmates over for playdates to encourage interaction. They are all special needs kids, and seeing each other outside of school is too weird and overwhelming for them.
Yes, my son’s hair is tangled and unruly. He is terrified of having it either washed or cut, and I just have to do the best I can. I know it doesn’t always look great.
Yes, I vaccinate my kids. I think the autism/vaccine link is pure bumph. I respect anyone who does believe in the link and I expect the same courtesy from them.

And no, I had no clue what special needs parenting was all about until I woke up one morning and discovered that I was now one of them. Many things have surprised me about this journey. There are things both good and bad that I did not expect. Being a special needs mom has taught me a great deal about myself and about other people. One of my biggest surprise discoveries is that I have far bigger reserves of patience than I thought. For the most part, I can stay calm in the face of a meltdown, and do what I need to do to see myself and my son through the storm.

Last week, I used my social media channels to ask other moms the question: just what is it about special needs parenting that has surprised you the most? I got responses that were both poignant and uplifting. Many of them I can relate to myself.

Here’s what other special parents have found surprising about their journeys:

  • The apathy of most people. If it’s not affecting them personally, they don’t give a crap or they say ” Why should I? It’s not affecting me” (Leigh)
  • It’s not as bad as I thought it would be. (Jacquie)
  • How much energy it takes at times…like mid-meltdown… (Lucette)
  • The lack of community support. I was also surprised by my reaction to that – one of passion and action! (Amy)
  • How ignorant the NT’s can be (Ron) (For the uninitiated, NT means neurotypical, a fancy term for “typically developing”)
  • How strong it can make a mother! (Mimi)
  • How screwed up my idea of success was. (Jennifer)
  • How uncaring the rest of the community is and how much energy it takes to keep on fighting for acceptance. (Susan)
  • The fact that we have to fight our school systems for EVERY support and service that will help our kids in the future. (Barbara)
  • How hard it is to accept offers of help, and how much better it works for everyone when I do. (Ruth)
  • How strong I’ve become, physically and emotionally…well, most days anyway. 😉  (Megan)
  • How after a while you stop seeing the special needs, and just see the child. It’s only ever other people who make you notice the special needs again. (Freya)
  • How hard but rewarding it is! (Hike. Blog. Love)
  • How much you truly learn from them! And I now know the real meaning of determination. (Vera)
  • How I have forced myself to re-evaluate some of the values I had about life. Some people will always do “bad” things, our faith in a Higher Power should be our motivation to forgive those people since we ask forgiveness from “Above” and HE forgives indiscriminately (Naadia)

Reading what these parents have to say should send a very clear message that even when there’s a common diagnosis, like autism, everyone’s journey is unique. We all have our own sets of challenges.

So next time you think someone is falling short of what they could or should be doing as a parent, just remember that you’ll probably never have the opportunity to wear their shoes.

(Photo credit: http://www.flickr.com/photos/libookperson/6187904322/. This picture has a creative commons attribution license.)

Filed Under: 2012 Wordcount Blogathon, autism, Children, Coping Skills, parenting, Special Needs, WEGO Health Tagged With: , , , , , ,
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Beyond The Stars

April 29, 2012 By

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 29 – Six sentence story: In this day of micro-blogging – brevity is a skill worth honing. Can you tell a story and make it short and sweet? What can you say in six sentences?

When my son George was diagnosed with autism, I didn’t really know what it meant or what he would ultimately be capable of.

I didn’t know what it would mean for my family, or for George’s sibling relationship with his little brother.

Since then, we have discovered that George has potential that reaches beyond the stars, and that all we have to do is help him get there.

We have discovered that he has a big  heart with an infinite capacity for love, and that he and his brother will be best friends for life.

There are challenges, and I worry about what the future could bring for my boy.

But I believe in him absolutely.

(Photo credit: http://www.flickr.com/photos/gsfc/5161800961/. This picture has a creative commons attribution license.)

Filed Under: autism, Believing, Brothers, Children, family, Health Activist Writers Month Challenge, WEGO Health Tagged With: , , , , , , , ,
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The Good And The Bad

April 26, 2012 By

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 27 – 5 challenges, 5 small victories: Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.

Autism can be a very complicated thing to live with. Its manifestations change from day to day. One day, my son will be able to tolerate loud noises but a small change in routine will send him into meltdown. The next, we’ll be able to turn his entire routine upside down but anything louder  than a whisper will set him off. Different strategies work for different kids on different days, and everyone you might see guidance from is convinced that their opinion is the right one.

The things I find most challenging about being an autism mom don’t really have to do with the autism itself. Whatever might be going on with my child on any particular day, I just deal with it. Sometimes it’s hard, but I always know that I’m doing my best, my son is doing his best, and at the end of the day we’ll all survive.

My challenges tend to come from sources other than my son and his autism. I list them in no particular order.

  1. The judgmental critics. It’s a moment every autism parent has lived through at least once. You and your child are in a grocery store, which let’s face it, is a mecca for sensory overload, and your child is getting more agitated by the second. You throw things into your cart at quickly as you can, but just as you get to the checkout, your child reaches his breaking point and explodes. As you are trying to calm him down, some snarky stranger loudly proclaims, “What that child needs is a good hiding.” I once heard someone say (referring to me), “If that mother was doing her job properly, this wouldn’t be happening.” Like I’m not already carrying around enough angst with me. With my social anxiety, I’m not great at the quick comeback, although I’m definitely better than I used to be.
  2. The third-person talker. These are the people who will talk about someone who is present as if that person were not in the room. The chances of this happening increase exponentially if the subject of conversation happens to have autism. I get it all the time. “Would George like a hamburger?” they will ask. My answer always seems to throw them a little: “Ask him,” I say. Yes, it is true that George is not the world’s greatest talker, and may not respond to everything that is said to him. But, you know. At least give the kid a chance to try. If he struggles to answer, I will help him.
  3. Guilt. I was educated at a girls-only Catholic school run by nuns, and I am married to an Irish Catholic man. I can therefore say with some authority that the Catholics turn guilt into an art form. And some of the guilt that I feel as a special needs parent (hell, forget special needs – just as a plain old parent) almost makes me think I should just convert. I feel guilty about everything. Did the Taco Bell I ate during pregnancy cause George’s autism? Did I give him enough affection as a baby? Am I paying enough attention to my other son? Did I get too mad at George when he tipped over the laundry basket?  The list goes on and on, and my guilt makes me constantly second-guess myself when I should just be following my parental instincts.
  4. Time. Time very often seems to be my enemy, so much so that I sometimes regard it as a person. Time with a capital T. No matter how much I try, Time seems to run away from me. At the end of each day, there is always something that remains undone. Parenting is my absolute number 1 priority, so my kids’ needs are always taken care of. But I tend to let other areas of my life slip occasionally, and that is detrimental to my physical and mental health.
  5. The Internet. When George was diagnosed with autism five years ago, the first thing I did when I got home was Google autism. I obsessively read web page after web page. Every link that I clicked on seemed to have some information that flatly contradicted something I’d read somewhere else, and in the end my brain was hurting from information overload. I was overwhelmed by not knowing what information to trust. Since then, I am wiser in my use of the Internet and I have learned, for the most part, how to tell the good information from the noise. But the Internet, with all of its gazillion theories about the causes of autism, can still hinder more than it helps a lot of the time.

In my house, there is no such thing as a “small victory”. Every single accomplishment, all of the positive things in our lives – are massive, big things. That’s the way it often is in special needs families. We tend to place extra stock in things that other families take for granted. And as hard as it can be to live with autism, there are many things that I am grateful for, that enable me to keep chugging along even at times when I just want to cry.

  1. Love. Love really does make the world go around. Out of all the challenges my son has, lack of affection is definitely not one of them. Both of my sons give the best hugs that I can carry around with me all day. My favourite moments are when my boys somehow manage to squeeze onto my lap together to give me a hug. I sit there, with my arms full of squirmy, giggling kid, and never want the moment to end.
  2. Running. Yes, running keeps me sane, and when something stops me from doing it – like illness or injury – depression starts to creep in. The fact that it keeps me in good physical health is almost a by-product of running. My prime reason for doing it, along with raising funds for autism, is to keep my mental health on an even keel. I struggle with mental illnesses like depression and anxiety, and there’s no better way to combat my darker moments than a good long run. I am stubbornly resistant to using medication to deal with my issues, and running acts as a decent substitute for chemicals most of the time.
  3. Therapy. It has been said that running is cheaper than therapy, and while that is certainly true, I actually do need both. The therapist/client relationship is a very strange one. It involves the client placing complete trust in someone they actually know nothing about. I have been going to my therapist for a little over a year now, and it has taken me almost all of this time to build up my trust to a level where I can really open up during my sessions. Sometimes the sessions are very hard and they make me feel all weirded out for a while, but the truth is that once a week, I get the opportunity to talk without reservation in the sanctuary of my therapist’s office. I can say whatever I like and there will be no judgment or anger.
  4. Writing. I am somewhat inept as a verbal communicator, and I experience high levels of anxiety in social situations. When I am talking to other people, I hold back a lot, not only because of my natural shyness, but because my brain actually doesn’t work well during conversation. I can formulate a completely coherent thought in my mind, and even mentally phrase how I want to say it, but when it comes time for me to speak, my words get lost somewhere between my brain and my mouth. With writing, that doesn’t happen. I truly have a voice, and I treasure the opportunities to speak my mind on things that are important to me.
  5. The Internet. The Internet is both a blessing and a curse. Despite the evils described in my “bad” list, the Internet is a haven of sorts. I belong to two Internet support groups – one for moms who have suffered pregnancy or infant loss, and one for parents of children with autism. Both of these groups are places where I can vent my concerns, ask for advice, or celebrate good news. Some of my best friends are people who I have known online for a long time, but have never met in person. Here’s the wonderful thing about the Internet: no matter what I am going through on any particular day, I will always be able to find someone who knows, at least to some extent, how I feel.
Filed Under: autism, Challenges, Communication, Health Activist Writers Month Challenge, Mental Health, running, Victories, WEGO Health Tagged With: , , , , , , , , , , ,
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Dream A Little Dream

April 14, 2012 By

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 14 – My dream day: Describe your ideal day. How would you spend your time? Who would you spend it with? Have you had this day? If not – how could you make it happen?

Summer 2008

My perfect day…

It is a hot day and the sun is shining brightly. We are on a beach with lots of soft white sand, and the sound of the Atlantic waves fills our ears.

It is our first proper family holiday. I am with my husband and my two children, who at 2 and 4 years, are the perfect age for children to really enjoy a day at the beach. My brother is there too, and so is my mom, who has flown in from South Africa to be with us.

George, who is almost five, has found a new hobby. He lies down on the slope leading down to the water and he rolls himself down, down, down until he feels the waves kissing his body. Then he jumps up, and squealing with delight, he runs back up the slope to do it all again.

Not only is this fun for him, the physical motion of what he is doing seems to give him some kind of sensory input – something that many children with autism crave.

Two-year-old James and I are sitting near the water’s edge, and I am teaching him how to build a sand castle. I use the little shovel to put damp sand into the bucket. I pack it down as tightly as I can, and then turn the bucket upside down. I lift it off and we are left with a perfect tower for our castle. James stands up, and giggling like it’s the funniest thing in the world, he turns around and lets his bum go Plop! right on the tower.

“Again!” he shrieks, laughing so hard he can hardly talk. “Again, again, again!”

So we do it again. And again, and again, and again. We are not making any progress with the sand castle, but we are having a lot of fun.

My husband is in the water, doing battle with the waves. His life has not afforded him much opportunity to swim in the ocean – real ocean with big waves that raise you up and move with you and crash over your head. He turns and waves; I wave back and laugh as a wave hits him side-on, knocking him down.

I see my mom and brother in the distance, returning from a walk along the beach. They meander slowly to me, taking their time, and sit down beside me, James and George, who has finally tired of his roll-down-the-slope game. My husband comes out of the water and joins us. We discuss dinner plans, wonder whether we need to stop on the way back to the house for wine, and bury the kids up to their waists in sand, much to their amusement.

We are together. We are happy. We are family.

Later, as I am riding the waves, I think that there is only one thing stopping this day from being complete, and that is the absence of my dad. But then, as the ocean swirls around me – the same ocean in which Dad’s ashes were scattered thousands of miles away – I look around me, at the sunshine and the white beach where the people I love most are clustered around a smushed-up sandcastle.

As the laughter of my children floats through the air and reaches me, I think that Dad is probably with us after all.

(Photo credit: Kirsten Doyle)

Filed Under: Beach, Children, family, Health Activist Writers Month Challenge, Vacation, WEGO Health Tagged With: , , , , , ,
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A Day In The Life

April 11, 2012 By

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 11 – Theme song: Imagine your health focus or blog is getting its own theme song. What would the lyrics be? What type of music would it be played to?

I confess that I had no idea what to do with this prompt. My writing skills do not extend to the lyrics of songs. That is my husband’s arena. Therefore, for today, I decided to use one of the bonus prompts:

Daily schedule: Write a list of your daily routine from the moment you wake up until the moment you go to bed. Be honest!

alarmclock

5:00  I wake up to the sound of the alarm on my phone. More often than not, I am on the futon in my living room with a small kid pressed up on either side of me (although it must be said that the small kids are getting less small by the day). Because I’m wedged in between my kids, I can’t simply grab my phone and throw it against the wall like I want to. It takes effort to extricate an arm. Often, as I’m reaching for the phone, I knock it off the table, and then I have to get out of bed – a supreme effort indeed – to pick it up and turn off the alarm.

5:15 I turn on my computer to check my email. I am dressed in my running clothes and I am waiting for the coffee to finish brewing. While I’m reading my emails my younger son wakes up. I get him a cup of milk and start preparing to leave, knowing that I will be delayed by my son’s constant chatter.

5:25  I kiss my older son goodbye. He is asleep, but he will know if I’ve left without kissing him goodbye. I field a gazillion questions from my younger son and eventually manage to escape. I sprint to the bus stop and make it with seconds to spare.

6:30  I arrive at work and head straight for the corporate gym in the bowels of the building. I dump my stuff in a locker, fill up my water bottle, and head out for a run. I’m still groggy and sleepy, but the first kilometre or so takes care of that.

8:00  I get to my desk, all showered and feeling good from my run. I drop my bag on my chair and go straight back out for coffee and a bite to eat. I bring it back to my desk and work until noon.

12:00 Lunch-time! I curse about having once again left my carefully prepared lunch in my fridge at home. I gather up my notebook computer, buy a random salad somewhere, and sit in the common room writing words.

12:30  Back to the grindstone.

2:45 Arrival of my mid-afternoon energy crash. I go out for coffee, and while I stand in the queue I stare at the display of donuts and cookies wondering if it would be OK for me to have one. By the time I get to the front of the line I’m so undecided that I don’t get anything except the coffee. Which is a good thing.

4:00  I pack up, log off, say my goodbyes to my co-workers and leave. I go to the subway station and position myself on the platform just where I think the train doors will end up. More chance of getting a seat that way.

5:30  I arrive home, lamenting the fact that once again, I did not get a seat on either the subway or the bus. I walk home from the bus stop, and stop to check the mailbox on the way home. I do so much stuff over the Internet these days that I hardly get any actual mail.

5:35  The husband and children, who get home before I do, have been standing at the living room window watching for my arrival. The husband opens the front door to release the kids, who run towards me in that joyous, unrestrained way that only children are capable of. I dump my bags, drop to my knees, and open my arms. My boys come hurtling into my arms and almost knock me backwards with the force of their love.  My cup overfloweth with happiness.

6:00 The kids were fed their dinner before I got home, and now the husband and I are cooking up something for ourselves. I enjoy the companionship as we chop vegetables together and chat about our days. I reflect on how fortunate I am to have a husband who supports me in my writing and my running, who accepts me for all of my weird little quirks, and who is the best dad ever.

7:00  Dinner has been cooked and eaten. I clean up the kitchen but don’t start the dishwasher – not yet. My older son, the one with autism, has a lot of angst where the dishwasher is concerned. I have only just gotten to the point where I can unpack and reload it without him completely melting down. Actually running it would be asking for trouble. Best to wait until he is asleep.

7:30  Bathtime for the kids. George goes in first, because he really doesn’t like being in a tubful of water. I soap him down and then, amid panicky cries of protest, I wash his hair. Like many autistics, he has a big problem with having his hair washed. James dives for cover, only emerging when George is safely out of the tub and in his pyjamas. James’ bath-time is a splash-fest. I have to keep a towel handy for myself, and I’m not even in the water.

8:30  The kids go to bed. George has done his homework (and got it right) in about three seconds flat. Bedtime milk has been consumed, stories have been read, hugs and kisses have been administered. I wait until George is asleep and then turn on the dishwasher. I make lunches for the following day and ensure that everyone has clean clothes to wear. I sit down at my computer and do whatever admin needs to be done.

9:30  My day’s work is done and now it’s time to reward myself. I pour a glass of wine, send my daily email to my mom, and waste time on Facebook. I complete and schedule any unfinished blog posts and start one or two new ones. Sometimes I abandon Facebook in favour of a nice soak in the tub. There’s something very decadent about sitting in a bubble bath with a book and a glass of wine.

10:00 I have a cup of tea with the husband and sigh dramatically as he channel-surfs. Why do men do this? Just as I’m getting into whatever happens to be on the channel gets changed.

10:30  I suddenly remember some crucial email or piece of admin that absolutely cannot wait until the following day. I turn on my laptop again to take care of it.

11:00 I fall into bed in a state of exhaustion, and fall into a fitful sleep that will, at least once, be interrupted by one of the kids needing something. Sometimes, I wake up to find one of them beside me. And I’m completely fine with that.

(Photo credit: http://www.flickr.com/photos/szift/3196084839. This photo has a creative commons attribution license.)

Filed Under: autism, Children, Commuting, Daily Schedule, family, Health Activist Writers Month Challenge, running, WEGO Health, Work, Writing Tagged With: , , , , , , ,
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Autism Through A Child’s Eyes

April 8, 2012 By

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 8 – Best conversation I had this week: Try writing script-style (or with dialogue) today to recap an awesome conversation you had this week.

I’m not much of a person for conversations. I suffer from social anxiety, so talking is difficult. I tend to be more comfortable finding my voice in the form of the written word.

Obviously, this is less of a problem when I am among friends and family. I am married to a man who, in addition to having a totally off-the-wall sense of humour, has no “inside voice”. The conversations I have with him range from the baffling to the downright hilarious.

I also have some great conversations with my younger son, James. For a six-year-old, his vocabulary is astounding, and his imagination knows no bounds. He weaves in and out of topics at will, and you can never tell where the conversation will go next. One moment he seems to be wise beyond his years; the next, we are reminded that he is still a kid finding his way in this world.

A few days ago, we had this conversation while I was cooking dinner:

James: Mommy, can you buy me a water gun?
Me: Why do you want a water gun?
James: So I can spray Granny on the nose.
Me (after snarfing on my coffee): Why do you want to do that?
James: Because her nose is dry and that means she’s sick. Roger (a classmate) said so.
Me: Roger said that Granny is sick if her nose is dry?
James (looking at me as if I’m nuts): No. He was talking about his dog.
Me: Ummmm, James? Dogs and people aren’t the same. Granny’s nose is fine.
James: I think Roger’s dog has autism.
Me: What makes you think that?
James: He doesn’t talk and he knocks down Roger’s Lego towers. It’s not his fault, though. He doesn’t know what he’s doing because he has autism.
Me: James, that’s just the way dogs are. Dogs don’t have autism.
James: How do you know?
Me: Ermmmmm (thinking: the kid has a point)
James: Mommy?
Me (wondering about James’ sudden sombreness): Yes, buddy?
James: Will George always have autism?
Me: Yes, baby, he will. Autism is not something he can grow out of.

I want to pause this account briefly to say that where autism discussions with James are concerned, I find that honesty is the best policy. I don’t try to sugar-coat anything, and I answer questions without elaboration. This approach seems to be the one that works best with James.

James: That’s OK. I love him.
Me: I know you do. And he loves you too.
James: Yeah! Mommy?
Me: Yes?
James: Will George die from autism?
Me: No, people cannot die from autism. We just have to make sure we keep him safe.
James: It’s OK, Mommy. I’ll take care of him.

Yes, I cried.

(Photo credit: Kirsten Doyle)

Filed Under: anxiety, autism, Children, Conversations, Empathy, Humour, Siblings Tagged With: , , , , , , ,
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Butterfly

April 5, 2012 By

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 5 – Ekphrasis Post: Go to flickr.com/explore and write a post inspired by the image. Can you link it to your health focus?

When my son was first diagnosed with autism, we enrolled him in a local daycare centre on the advice of his speech therapist. He needed the social aspect of it, she said. He needed the group lunchtimes, the circle times, and all of the other elements of being part of a group of children. We were nervous about letting our sensitive, vulnerable son out of our immediate orbit, particularly since the daycare had never had a child with autism before.

To their eternal credit and our eternal gratitude, the daycare welcomed George with open arms. The director of the centre arranged for all of her staff to be trained in how to work with special needs kids, and George was very happy there.

During the summer months, the kids would be taken to play outside at the end of the day while they were waiting for their parents to pick them up. I would get off the bus from work, pick up my boy, and walk home with him. One day, I picked up his backpack from the darkened daycare classroom as usual, and went out to the playground. I always tried to arrive undetected so I could watch George at play for a few minutes. In typical autistic fashion, he always did his own thing. He played among the other kids, but not with them.

On this particular day, I got to the playground just in time to see a few of the other kids preparing to have a race from one tree to another. George stood apart from the kids, watching them shyly. When the daycare teacher said, “GO!” the kids scampered away from the start line while George stood by on his own.

My heart constricted with unbearable sadness. The whole thing seemed to underscore the isolation of autism, and I felt a sense of unjustness that my child was standing there on his own. With his lanky frame and long legs, he is a natural runner. He might have won that impromptu little race.

Damn autism, I thought. I knew these other kids well enough to know that prior to lining up for the race, they would have tried to encourage George to participate. But being locked in his own world, he would not have known how to. Outwardly, he seemed perfectly happy, but I couldn’t help wondering about that. What was going through his mind as he watched those other kids at play together? Did he feel any sense of isolation? Did he wish he knew how to join in?

I started thinking about sports teams and group activities. Was George ever going to be able to be part of a soccer team or a high school band? Would he travel in a pack of teenage friends or would he sit by himself in the high school cafeteria? Would he be excluded from birthday parties? Or would some group of well-meaning kids include him in their group and look out for him?

How was my child, with his autism and his social communication deficits, going to survive in a social world?

This is a concern that is with me more or less all the time, despite assurances from his teacher that he is starting to tentatively reach out socially at school, that he is getting better and better at participating in social activities, and that he is, in fact, an extremely well-liked member of the student body.

A few days ago I saw something that made my heart soar. Me and my husband were out for a walk with the kids, and we saw the teenage boys down the road shooting hoops in their driveway. Before we could stop him, George ran up to the boys and held out his hands for the ball. The boys good-naturedly obliged, and like a true natural basketball player, George bounced the ball on his knee and then threw it towards the hoop as if he did this every day.

The hoop was too high for George to have any success, and the boys offered to lower it for him. We told them not to worry and we went on our way, but not before the boys had invited George to play basketball with them any time he wanted.

When things like this happen, my vision of the future shifts, as if I’m looking at my son’s life through a kaleidoscope. I start to see possibilities that were previously hidden to me, possibilities that simply may not have been there before George grew and developed into them. Instead of seeing the kid who stood on his own while everyone else had a race, I now see the boy who, just for a few moments, joined other boys in a basketball game.

If I had, just a year ago, seen the picture that inspired this post, I would have thought, “George is probably never going to do that. He’s probably never going to romp around with friends or be invited to take part in impromptu soccer games.”

Now I look at that picture and realize that I am seeing the emergence of George as a social being. Maybe he’ll always be shy, and it is very likely that he will always need to be surrounded by people who will look out for him.

But his personality, his character, the very essence of who he is – that is emerging bright and beautiful, like a butterfly coming out of a cocoon.

Filed Under: Acceptance, autism, Childhood, Friendship, Health Activist Writers Month Challenge, Possibilities, Social Development, WEGO Health Tagged With: , , , , , , , ,
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Superhero Wannabe

April 3, 2012 By

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 3 – Superpower Day: If you had a superpower – what would it be? How would you use it?

superhero

A couple of weeks ago I posted something on Facebook about a long training run I had just been on, and one of my friends responded by asking if I run while wearing a cape and a big “S” on my shirt.

Well, no I don’t. It would be highly uncomfortable and let’s face it, people would stare. I don’t want to be responsible for any traffic accidents. And besides, being a distance runner might set me apart in some small way from non-runners, but it certainly doesn’t make me a superhero. If I was wearing an “S” on my shirt, it would stand for “sweaty”.

But what if I was a superhero? What if I could choose any superpower I wanted? What would that superpower be and how would I use it?

As an autism mom – indeed, as a plain old mom – there are so many areas in which I feel woefully inadequate. There are so many things that I wish I could do better, or faster, or with less grief. There are, of course, things I would like to do that in the real world are simply impossible.

And now, for the purposes of this article, I have to choose just one superpower.

The ability to cure autism? This may seem like the obvious choice, but it is not what I would want. If I cured my son of autism, I would be changing who he is. And while I am on a permanent quest to help him with the aspects of autism that cause him pain and frustration, I would never, ever want to change who he is.

What about bottomless reserves of patience? Those who know me well know that I am don’t exactly have a Zen-like aura of calm about me. I tend to get a little fraught at times. But changing that would surely change who I  am, and while I would never claim to be perfect, I’m reasonably OK with the person I am.

No, the superpower that I would order would be the ability to instantly soothe my children. At a touch, I would be able to calm my son from his meltdowns, and in the midst of his inability to communicate that causes him such frustration, I would make him feel safe and secure. I would brush my hand lightly on his forehead, and immediately, he would know that everything is OK, and inner turmoil he was feeling would disappear.

I would use this superpower on my younger son as well. The neurotypical child, the sibling to the special needs child. The one who, while knowing that his brother is different and needs special care, sometimes feels overwhelmed by it all. It is a rough deal, being the brother of a child with autism. My two boys unquestionably love each other, but still, it is hard for the sibling.

With my superpower, I would soothe my younger son when things got too much for him. When something happened that he perceived to be unfair, I would gently stroke his hair, and he would instantly feel a sense of calm. He might not fully understand his brother’s autism, but he would feel that everything was right with the world, and he would feel the love that we all have for him. He wouldn’t feel overwhelmed, and above all, he would know that his brother adores him and never, ever wants to hurt him.

I strive to make my kids feel these things – usually, it just takes longer than I would like.

(Photo credit: http://www.flickr.com/photos/globalismpictures/5723668328/. This picture has a creative commons attribution license.)

Filed Under: autism, Brothers, Emotional stability, family, Health Activist Writers Month Challenge, parenting, Siblings, Special Needs, Superhero, Superpower, WEGO Health Tagged With: , , , , , ,
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