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A Place To Stand

April 2, 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 2 – Quotation Inspiration: Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes.

move the world2

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

While I was labouring with my first child, I channelled some of my pain by yelling out swear words about Ontario’s new premier, who had been appointed after the resignation of his predecessor. I did not have much interest in Canadian politics at the time: I had only been in the country for three years and I did not have the right to vote. Adjusting to living in a new country and being pregnant had pretty much taken up all of my energy.

I didn’t know anything about this man I was yelling obscenities about, except that he had this irritating whiny voice that made me wish my head would just explode.

At some later point, after Mr. Whiny Voice had been ousted from office, I asked someone how Toronto’s problem with homelessness had originated. The answer horrified me. Apparently, the former Ontario government – the one led by Whiny Voice’s predecessor – had cut funding to a lot of services, mental health care being one of them. As a result, patients with mental illness suddenly found themselves being ousted from programs that they could not afford to pay for themselves, and in the absence of homes or job prospects, they had ended up on the streets.

When I heard about this, I just wanted to cry for these people. I mean, is that any way to treat a human being? Stop their treatment and put them out in the street?

As an autism parent, I know all about the difficulties with funding. Governments do not have unlimited money, and increasing – or in some cases, merely maintaining services comes with raised taxes, and that never goes down well with the public.

I could offer up a thousand suggestions as to what could be cut instead of services that allow people to have basic dignity and quality of life, but this post is already in danger of being more political than I’m generally comfortable with.

Instead, I will say this: that every single person has a place in this world. No matter what challenges they face, no matter what their strengths and weaknesses are, and no matter what level of functioning they ultimately achieve, they are all rightful members of the communities in which they live, and they should be respected as such.

I often tell the story about the day we received George’s autism diagnosis. In the midst of the devastation that goes with this kind of thing, the doctor started talking about his prognosis for George’s future. He didn’t hold out much hope, and we left his office that day thinking that as an adult, George wouldn’t be able to do much more than sweep floors.

The reality has turned out to be very different, and although George is an eight-year-old with some profound challenges, he is also an eight-year-old with a great deal of intelligence and a ton of potential.

But that is not the point. The point is this: so what if George grows up to sweep floors or clean toilets? Can you imagine what the subway station or the airport or the shopping mall would be like if there was no-one to sweep the floors or clean the toilets?

Whether my son sweeps floors, becomes a computer programmer, works in a library, or wins the Nobel Peace Prize for revolutionizing heart transplant surgery, he has a place in the world.

It is my job to help him reach his full potential, whatever that may turn out to be.

It is up to me to help him find a place to stand so that he can move his world.

He already totally rocks mine.

(Photo credit: http://www.flickr.com/photos/sporst/6914330609/sizes/m/in/photostream/. This picture has a creative commons attribution license.)

Filed Under: autism, Government Funding, Health Activist Writers Month Challenge, Mental Health, parenting, Respect, Society Tagged With: , , , , ,
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Time In A Bubble

April 1, 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 1 – Health Time Capsule: Pretend you’re making a time capsule of you and your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?

timecapsule

Sometimes, usually when I’m reminiscing about one of my grandparents, I wonder what the world was like a hundred years ago. In 1912, my maternal grandmother was nine years old. Cars were just starting to change the way people lived, and people were starting to realize that planes might be more than just a passing fad.

In 1912, the Republic of China was formed and the Titanic sank. Gene Kelly and Pope John Paul I were born, and the members of the Scott expedition to the South Pole died.

One hundred years ago, telephone communications happened over a party line and computers had not even been dreamed up. There was no such thing as a TV dinner. Indeed, there was no such thing as a TV.

It is very clear that the world was a completely different place back then. If you were to take my nine-year-old grandmother from that time and plunk her down in the middle of 2012, she wouldn’t have a clue what to do.

Now I cast my mind to the future, to the year 2112. What thoughts will the people then have about the way the world is today? What would I want them to think? What would I, the 42-year-old me who lives in 2012, want them to know about me and my life?

Maybe I should put together a time capsule, something that some random stranger can dig up a hundred years from now to get a glimpse into my life and the things that are important to me.

There would be photos, of course, a visual record of me and my family. Maybe a flash drive of family videos that the finder could watch – assuming, of course, that flash drive technology isn’t totally redundant by then.

I would include a pair of running shoes, and maybe one of my half-marathon finisher’s medals. I would print out a copy of my training plan, so whoever found the time capsule would know that I took my running seriously and tried to be healthy about it. They would know that I cared enough about my feet to use orthotics, that I ramped up my training in a way to avoid injury, and that running was my biggest stress-relieving tool.

There would, of course, be a lot of stuff about autism. A copy of George’s developmental assessment report and the autism awareness magnet that’s on my car. I would put in a copy of the very first “real” picture that George drew depicting a recognizable scene from a TV show. I would have to include one of George’s Mr. Potato Heads, along with a description of how this little character helped George’s development in so many ways. And what about a program from the biannual autism symposium? I could include one of my fundraising appeal letters for my autism runs.

Out of respect for my younger son, I would include a book about raising a child who is the sibling of a child with autism. I would throw in some of James’ artwork depicting him and George, and a leaflet about the autism centre’s sibling support program. I would want whoever found this to know that George’s autism didn’t only affect George, that we also had to make special consideration for his little brother.

And because James is an individual in his own right, I would include some stuff that’s just about him. A Lightning McQueen car. His soccer shoes. One of the T-shirts my mom has sent him from South Africa, that he always loves wearing.

Mental health is a big issue in my life. I would include some of the antidepressants I took a few years ago before the side effects scared me into stopping. I would print off some stats and information about post-partum depression – something that I suffered terribly from and that I still don’t think there’s enough awareness of. And maybe, just for fun, I would include one of my therapists’ bills. Whoever finds it can then gasp in astonishment and say, “Wow, they only paid that for therapy in 2012?”

Family is an important element in my life as well. My family, by their mere presence, enhance my physical and mental health. My husband’s support of my endeavours has an unquestionable affect on my stress levels and sense of wellbeing. So I would have to include a copy of my marriage certificate.

This time capsule is starting to get kind of full, and I haven’t even touched on some people in my life who would have to be represented, like my mom and my brother, and my best friend Jenny, and some other folks who form the fabric of my life.

I’m off to find a bigger box.

(Photo credit: http://www.flickr.com/photos/carbonnyc/2563369930/. This picture has a creative commons attribution license.)

Filed Under: autism, Children, Depression, family, fundraising, Health Activist Writers Month Challenge, Mental Health, Post-Partum Depression, running, Siblings Tagged With: , , , ,
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Home Is Where The Hat Is

March 31, 2012 By

I cannot say for sure when my firstborn son decided that he had to wear a hat at all times. Looking back at old pictures, it seems apparent that he spent most of his toddlerhood in a hatless state. I don’t remember him ever being resistant to wearing a hat, although from the get-go he was picky about the style of hat that he would allow onto his head.

All I know is that at some point – I’m pretty sure it was during one summer or another, the hat became a permanent fixture. It wasn’t even a gradual progression, like his preference for insistence on striped shirts was. It was an overnight thing. One day, he could take his hat or leave it. The next day, it had to go everywhere with him, even into the bathtub. Even to bed. The absence of the hat became an instant source of extreme distress for him. Taking it away from him would make him scream as if the world was ending. One day, when we forcibly removed the hat to throw it into the washing machine, a complete stranger called us from New Zealand and said that the noise had woken him from his slumber, and had we just removed our child’s kidney?

OK, I made that last bit up, but you get the picture. George will defend to the very last his right to have his hat with him no matter what.

On the surface of it, this may not seem like a big problem, but it is amazing how the full-time presence of a hat can encroach on real life. And so we had to work with George’s teachers and therapists to wean him from the hat, or at least get him to the point where he could do without it for brief periods of time.

Several years later, George is still into the hat. Whenever he outgrows a hat, my mother sends a bigger one from South Africa. We do have hats in Canada, of course, but the ones provided by my mom are so cool, so she is in charge of upgrading the hats.

We are able to persuade him to remove the hat at certain times. At bathtime it comes off his head, and remains out of his reach but always in a place where he can see it. When he is at school, he takes it off and hangs it on the hook in his cubby, only putting it on for lunch and recess. And at bedtime, the hat sleeps on the pillow beside him. To our eternal relief, he now consents (with just a little bit of protest) to having his hat taken  away for the purpose of being washed.

Although he takes it off when he absolutely has to, George still loves his hat and he always has to know where it is.

So if you’re ever in my neighbourhood and come across a shy, sweet boy who doesn’t say much and wears a striped shirt and a hat from Africa, chances are that you’re looking at my beautiful son.

Filed Under: autism, Children, Hats Tagged With: , , , , ,
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No More Teachers, No More Books!

March 25, 2012 By

George doesn’t want to go to school.

Big deal, I hear you say. He is, after all, an eight-year-old kid, and if I got a dollar for every eight-year-old kid who didn’t want to go to school, I’d be signing up to be the next space tourist.

His reluctance to go to school has escalated, though. It started mildly enough about five weeks ago. I was getting him ready for bed one evening when he said, “School is closed.”

“No,” I said. “School is open.”

He went to school without resistance the following day, but this became a nightly ritual. Each evening, the frequency of “School is closed” statements would increase, but as far as I could tell, there was no anxiety associated with it.

Then March break happened and everything changed. Over the course of the week-long break from school, both of the kids were sick. James recovered fairly quickly, but George had a bad cough that lingered, so I got him some natural-remedy cough syrup.

And what has cough syrup got to do with this story? Well, George hates taking cough syrup. In order to give it to him, I have to wrap him up in a blanket and give it to him with a syringe, a tiny bit at a time so he doesn’t spit the whole lot out at me. So when he reached for the cough syrup on Monday morning, indicating that he wanted that rather than school, we knew that this school aversion was serious business.

The following morning it got worse. George woke up very early and for over two hours, he constantly said, “School is closed. No school. School uh-uh.” All the time, his anxiety level was steadily rising. The pinnacle of all of this was George going into the bathroom and trying to force himself to throw up.

Despite all of this, when the school bus arrived, he got onto it without resistance, albeit looking absolutely miserable.

I sent an email to the school describing George’s behaviour and asking if anything was going on at school that I needed to know about. I didn’t think so: this is George’s third year with the same teacher, and she’s been absolutely fantastic for him. But there is, in all likelihood, something behind this and I needed to either rule out or confirm problems at the school.

Because she is so awesome, George’s teacher called me back within an hour of me sending the email. She reassured me that everything was fine, and that she would not have known that George was having a problem if I had not gotten in touch with the school.

Then she said something that was so obvious that I felt stupid for not having thought of it immediately. She said, “Did this start after you returned from your trip?”

Of course! I had been to South Africa for two weeks by myself, leaving husband and kids to hold the fort at home. The last time I had been to South Africa, when my dad died, George was 15 months old and James wasn’t even a gleam in my eye. My absence was a highly unusual state of being for both of the kids, and George, with his autism, must have had a very difficult time processing it.

And within a few days of my return, he started his nightly “School is closed” routine.  The idea that he is working through some separation anxiety makes perfect sense. The break in routine resulting from March break would have exacerbated the problem.

On the one hand, I am relieved to know that everything at school is fine. But on the other hand, I feel guilty about having been away, even though my presence in South Africa was so badly needed at that time.

I can only hope that with a bit more time and many more hugs, George will feel reassured. And if I ever have to go away unexpectedly again, I hope he will know that I am coming back.

Filed Under: anxiety, autism, School, School Bus, Separation Anxiety Tagged With: , , , , , , ,
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Running: Breaking A Personal Barrier

March 19, 2012 By

My Distance Enjoyment Chart

Yesterday morning I went for a 17km run.

As usual, I didn’t get enough sleep the night before. As usual, I seriously questioned the sanity of what I was doing as I got ready. And as usual, I ended up enjoying the run far more than I had thought I would.

Whenever I’m ramping up my distance, 17km is a milestone distance. If you were to plot my enjoyment of distances on a graph, the line would rise steadily from 5km to 10km. Then it would start to drop, and the lowest point would be at 16km – a distance that for whatever reason is hell for me. After 16km, the line climbs and reaches its highest point at 21.1km – the half-marathon distance.

So 17km is like a magic number for me. It means that I have broken the ugly 16km barrier at which I never really know how to pace myself, and I am free to run true to my natural style.

I knew going into the run that it might be a challenge. Two decades ago I sustained a serious injury to my left ankle that flares up from time to time. On Saturday night, I had woken up multiple times feeling as if someone was sticking a red-hot skewer right into the centre of my ankle joint. Sure enough, when I started running on Sunday morning, my foot felt a little tender. In addition, my left hamstring was a little tight, probably due to the fact that I added hill training to my routine last week.

I ran anyway, reasoning that I could always stop if I had to, and yet knowing that I wouldn’t. Little aches and pains that I feel at the start of a run have a way of disappearing as I loosen up.

Apart from a couple of little twinges, I pretty much forgot about the pain in my ankle. The hamstring never really loosened up, but it didn’t get worse either, and I was able to pace myself more or less consistently throughout the 17km. I had my usual difficulties at the usual times, and got through it as I always do: positive self-talk, upbeat music, and a reminder that my whole reason for running is to raise funds for autism.

It’s amazing how the thought of doing something for your kids can put things into perspective. My son lives with the challenges of autism day in and day out, and it will be this way for the rest of his life. Surely, surely, I can cope with the challenges of running for a couple of hours once a week.

And so I finished my 17km, and returned home to be greeted by the child who motivates me to do all of this. This little dude is the only person in the world who can hug me fiercely without caring that I have 17km worth of sweat and salt all over me. Sure, it’s a little gross, but at the same time it’s totally endearing.

After the run I may not have felt as good as new, but I was in reasonable enough nick. My hamstring hurt like the blazes for the rest of the day and I needed to stay off my ankle as much as possible, but I felt the sense of triumph that always comes after a successful long run.

My next long run will be 19km, and I say: BRING IT!

Filed Under: autism, Injury, Mental Barriers, pacing, running, Running for Autism, Training Tagged With: , , , , , , , ,
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Blog Beginnings: A Funny Guy Made Me Do It

March 17, 2012 By

Tim “Red Barren” Carter, who gave me the idea for my blog

Two years ago today, my blog was born. When I wrote my first post, I didn’t really give much thought to where it would all lead me. I wouldn’t have even started the blog if I hadn’t been pushed into it.

Here’s what happened:

Over a decade ago, a super-cool dude by the name of Bruce started a super-cool ezine called Really Good Quotes, and I was one of the original subscribers. In the early days of the ezine, Bruce did everything himself: the research, the writing, the sourcing of quotes, and the compilation of the issues. Five days a week he did this.

After a while, Bruce realized that it would be nice to have a life, so he cut back from five days a week to three, and he started enlisting help. He recruited a couple of writers and asked me to be the editor. And so it became my responsibility to collect everyone’s submissions and format them into something resembling a respectable ezine. When I’d been doing this for about a year, Bruce offered me my own column. I handed off the editing responsibilities to a guy named Cliff, who does it far better than I did (and writes an awesome column to boot), and I started focusing my attention on writing.

Through this whole process, I became friends with the other writers on the ezine. We were a close-knit little group from the start and our friendships started to extend beyond the bounds of Really Good Quotes. One of my fellow writers – a guy who, sadly, is no longer with us – was called Tim. Tim had a heart the size of Texas and he was an amazingly funny guy. He was also a technogeek, so in addition to being a friend, he became my unofficial tech support person.

It was Tim who got me into writing outside of Really Good Quotes. My older son’s autism diagnosis came when I was in the midst of post-partum depression, and I felt myself buckling under the weight of everything. Tim contacted me during this dreadful time and told me that perhaps I needed an additional forum for my writing.  He offered me a space on his website where I could write whenever I wanted. There was no requirement to post, there was no pressure and no expectation. I simply had a place to go when I needed to vent.

One day more than a year later, Tim told me I needed to spread my wings. He wasn’t booting me off his site, and in fact he wanted me to stay and continue posting, but he felt that my writing was good enough to warrant a wider audience. He encouraged me to sign up with one of the well-known blogging platforms that came complete with a large community of bloggers. At first I was resistant to the idea. It sounded like more hard work than I was in the mood for.

Tim’s idea would turn out to be a bug that, once planted in my mind, kept nagging at me. After a couple of months, I thought, What the hell? I signed up, and here I am, celebrating my blog’s second birthday.

Many things have happened since then, both in my blog and in the broader context of my life. I have seen all kinds of growth in my kids, I have watched my son beat out all of the doctor’s predictions, and I have done some growing up myself. I have run all kinds of races and beat my own personal best times. I have voted for the first time as a Canadian citizen, I have tied the knot with my long-time partner and I have taken on extra responsibilities at work.

As far as my writing goes, I still write for Really Good Quotes. I am also a writer and scheduling editor for World Moms Blog and I participate regularly in the Indie Ink writing challenges. I have been invited to participate in the Health Activists Writers Month Challenge which runs in April. I have been voted as one of the Top 25 Canadian Mom Blogs. And very soon, my website will be going through an overhaul. I am excited at the prospect of launching a new look to showcase my writing.

I feel like I am entering a whole new phase and I cannot wait to see where it brings me.

Happy 2nd birthday, blog!

(Photo used with the kind permission of Kristen Carter)

Filed Under: autism, Birthday, blogging, Encouragement, Friendship, Indie Ink Writing Challenge, Milestones, Post-Partum Depression, Really Good Quotes, Uncategorized, World Moms Blog, Writing Tagged With: , , , , , ,
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My Husband Doesn’t Believe Me

March 12, 2012 By

Being a mom is very hard work, especially when you add autism into the mix. While it is more rewarding than anything else in the world, it is also exhausting and overwhelming. At times we special needs moms feel isolated from “real” life, misunderstood by friends and family members, and under-appreciated by our spouses.

Very often, it seems as if we have to carry the full load by ourselves. We are the ones who make sure the laundry is done and the dishwasher is packed. We supervise homework and get the kids to bed at a reasonable hour – at least, we try to. When a child has a sensory-induced meltdown, we are there to catch the fall-out. Many of us also have jobs that involve lengthy commutes, and most of us will sometimes pretend we need to use the bathroom just to get a couple of minutes to ourselves.

I would venture to say that at some point in time, all special needs moms – and possibly all moms in general – feel as if our husbands just don’t get it. They don’t understand how hard it is for us or how overwhelmed we feel. They get confused when we say we are lonely, because they don’t realize that our lack of a circle of friends is not a matter of choice. And sometimes, they are absolutely baffled by the resentment we express when we work ourselves to the bone until late every night while they sit on the couch watching TV.

I am generalizing, of course. There are plenty of men who are not lazy, self-centred and disinterested, just as there are plenty of women who are. Most dads do step up to do the parenting thing, and they do it well. They at least try to be supportive of their partners, even if they don’t always “get” it. I know some of these men. Hell, I’m married to one of them. Even on days when things are less than perfect – you know, those days when I complain about how hard my life is – I am grateful to have a husband who loves and supports me and is Dad to his kids in the ways that really matter. In fact, my husband doesn’t believe me when I tell him about things that some other dads either do or fail to do.

I belong to an Internet support group for parents of children with autism. The vast majority of members are moms, but there is a sprinkling of dads. A thread that’s going on in the group now makes me reflect on how lucky I really am.

You see, parenting a child with autism goes beyond the usual tasks of providing nutritious meals and ensuring that clothes are clean. You have to do things that you wouldn’t have to do for typical children, like teaching basic living skills that other kids naturally pick up from environmental cues. For example, I’ve never had to teach the toothbrushing routine to my younger son, who does not have autism. But for my older son, who does have autism, I have visuals set up and I have to give him verbal prompts throughout. And still, he requires a certain amount of hand-on-hand assistance for this task.

Where boys are concerned, there are certain life skills that it’s far easier for Dad to teach than Mom. Shaving facial hair being one. Aiming properly while peeing standing up being another. Women don’t have the need for one or the equipment for the other.

One of the dads in my Internet group posted a message several days ago offering tips for teaching a boy how not to pee all over the bathroom. Some of the advice was based on the notion of the boy’s father teaching by example. A mom in the group responded to the message by saying that her husband refused to teach their son this particular skill. Her response generated a number of other messages from moms in a similar boat.

Seriously? A father cannot take the time or trouble to teach his son such a fundamental skill? Yes, teaching stuff relating to bodily functions can be less than pleasant, and yes, this kind of thing does come with a certain lack of privacy. But these are our kids, and if we don’t teach them this stuff, who will?

I’m not saying that the dads I am referring to are bad fathers. You don’t have to teach your son how to pee properly in order to be a good dad. I’m just suggesting that it is perhaps a short-sighted approach, and that sometimes we just have to put the needs of our kids over and above our own sense of discomfort. The discomfort is temporary, while the skill learned will last forever.

There are times, of course, when male input is not available. Single moms, or those whose husbands are too incapacitated to help out, make a plan to teach their kids whatever skills are needed.

But dads, if you are present and physically able, please help teach your sons the stuff that dads can teach best. You will give your boys essential skills that will stand them in good stead for the rest of your lives, and the mothers of your children will be that much less frazzled and stressed. Who knows? It could even lead to you and your partner having more quality time to spend together.

And in a world that is high on pressure and low on time, that can only be a good thing.

Filed Under: autism, dad, parenting, Special Needs Tagged With: , , , , ,
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Countdown

February 23, 2012 By

first halfmarathon medal

Three minutes… Will it begin? Or end?

I shift nervously from foot to foot as I look at the crowd around me. The vibe here is immense. I feel like the collective energy created by these twenty thousand people could lift me up and carry me. I have not slept for a week in anticipation of this day, but that does not matter. Standing here, it is impossible to feel tired.

Two and a half minutes… Will these 13.1 miles make me or break me?

It all started six months ago with an email. A local autism centre was entering a team into this race. Was I interested in joining, to raise funds for autism services? My first reaction was: You must be joking. At the time I was tipping the scales at almost two hundred pounds, which was a lot for a woman whose pre-pregnancy weight had been 130 pounds. I had let myself go to seed following the birth of my younger son. Exercise was a four-letter word to me. I found it impossible to lift myself out of the post-partum depression I was still suffering from for long enough to walk to the mailbox and back. And now these people wanted me to run a race?

Two minutes… Will this race be the fruition of all my efforts? Or will it make me slink back into depression?

I deleted the email, but its contents pulled at a thread in my mind. I was in very bad shape, both mentally and physically. It was clear that I needed some impetus to get myself sorted out. Could this be it? Did I finally have the right reason to get up and do something? Would this venture even be possible?

One and a half minutes… Will I have the strength to go the distance? Or will I give up and not finish the race?

I recovered the email from my Deleted Items folder. If I decided to join the team, I could choose a distance. I ruled out the marathon – it would definitely be too much. I considered the 5 kilometre run, but somehow this did not seem to be enough. If I was actually going to do this, I wanted it to be a real challenge. I’ve never been one for doing things in moderation. Either I don’t do it at all, or I go all out. Abruptly, I checked my thinking. Was I seriously thinking of attempting the half-marathon? Was I crazy?

One minute… Will this endeavour cement my newfound love of running? Or will it make me toss my running shoes into the back of the closet forever?

My thoughts drifted to my older son. My beautiful boy with autism, so loving and full of promise. He could go so far and accomplish so much, but he would need help along the way. He would need services and social supports and programs, all of which cost money. The autism centre was hoping to raise funds to finance exactly the kinds of programs that are needed by kids with autism. I could be doing this for my son.

Thirty seconds… Do we proactively give our kids the best possible chances to overcome their challenges? Or do we just sit back and hope for the best?

Just like that, the thread in my mind – the one that the email had been gently pulling at – unravelled. I knew what I had to do. I pulled out my calendar and looked up a few online training programs. I worked out that in six months, I just about had time to train for a half-marathon. I signed up and got to work. And now here I was at the start line, fifty pounds lighter, and although not exactly fleet of foot, at least capable of running for a couple of hours.

The starter’s siren goes off and the crowd surges forward. As I cross the start line, I put a picture of my son in my head and run from the heart.

(Postscript: I finished that first half-marathon in almost two and a half hours. I remember the lump in my throat as I crossed the finish line and the tears that sprang to my eyes when I received my finisher’s medal. Every step of that race was dedicated to my son. Since then, I have done two more half-marathons for autism, and this year I will be doing it again. In my three autism runs to date, I have raised about $1500 for the Geneva Centre for Autism. My sons – the child with autism and his loving, caring brother – are my inspiration. I would run to the ends of the earth for them.)

For the IndieInk Writing Challenge this week, Shauntelle challenged me with "Write a story that begins "Three minutes. Will it begin? Or end?"" and I challenged Head Ant with "Write a story that includes the following: a dreamcatcher; red high-heeled boots; a broken wine glass."

Filed Under: autism, Autism Services, fundraising, Indie Ink Writing Challenge, running, Running for Autism Tagged With: , , , ,
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10 Useful Skills For Autism Parents

January 23, 2012 By

Autism parents frequently have to do things that other parents don’t. Our kids are so different, what with their limited communication skills, their sensory challenges, and at times, their superhuman physical strength. It is impossible to parent a child with autism in the same way you would parent a typical child (which means that when you have both an autie and a typical child you have to adopt two different parenting styles, but that’s another post for another day).

In the beginning, it’s hard, knowing what to do. And in a way, it never really gets any easier. But there are things I have learned from experience, that are now second nature. Here are ten of my favourites.

  1. Drywall repair. Many auties, my son included, are headbangers. They may bang their heads out of anger or frustration, or simply to get attention. And then they bang their heads, they don’t mess around. They give the wall a good solid WHUMP that’s enough to make the room shake. The drywall invariably takes some punishment. The inside of my house looks a bit like a pitted golf ball, and there are places where the impact of my son’s head has caused actual holes – big, gaping holes.
  2. Mixed Martial Arts. My husband likes to watch Ultimate Fighter on TV, and although I don’t watch it myself, I have absorbed some of it through osmosis. This has proved invaluable in times when my son has had a meltdown. When most kids have meltdowns, they simply lose their tempers. When auties have meltdowns, they thrash on the floor, bash their heads on the closest hard surface, and can risk hurting themselves quite badly. Even as they are kicking and screaming, they have to be kept safe. Hence the MMA skills. I have become quite the expert at using my bodyweight to restrain my son from hurting himself. The difference between me and the Ultimate Fighter guys, of course, is that I try to avoid causing pain, I don’t get paid big money for my efforts, and I have a mental age that’s higher than my shoe size.
  3. Dishwasher Racing. My son hates – and I mean hates – for the dishwasher to be open. Anytime I have to unload it and repack it, I have to deal with this kid repeatedly – and with increasing volume – telling me to close the dishwasher. He plants his bum on the kitchen floor, right in front of the sink, so I cannot get to the dishes. Sometimes I actually have to slide him out of the way. I have taken to setting the oven timer whenever I start doing dishwasher stuff, and the idea that he can visually see how long it will take does seem to soothe him. But God help me if the dishwasher is not packed, closed and switched on by the time the timer expires.
  4. Stealth Hair Cutting. My son, like many other kids, dislikes haircuts. But he doesn’t dislike haircuts in the same way most other kids dislike haircuts. He dislikes haircuts in the same way most people dislike having a kidney forcibly removed while fully conscious and able to feel pain. Rather than risk traumatizing my child, I give him haircuts while he is sleeping. This involves a lot of patience, as I have to wait until he is very asleep. If he’s not asleep enough, he will wake up as soon as I touch his hair and he will scream loudly enough to startle the llamas in Peru. I have to creep around in the dark like a burglar, and sometimes it takes several nights to get the job done.
  5. Mediation. OK, this is a skill that any parent with more than one child has to learn. But when one child has autism and the other doesn’t, you have to raise your mediation skills to a whole new level. It’s a bit like trying to sort out a dispute between one person who only speaks Zulu and another person who only speaks Icelandic, when you only speak Pig Latin.
  6. Jumping Through Hoops Of Fire That Are Constantly Moving. OK, that may be a slight exaggeration. But dealing with school boards can really feel that way when special needs concerns are brought into the mix. I am getting really good at making suggestions to teachers and therapists that are phrased in a way that makes it sound like it was their idea. If it gets what my son needs, I really don’t care who gets the credit for it.
  7. Improv. If I had a dollar for every time a random stranger made a stupid remark about my son needing “a good hiding” or “proper discipline”, I’d have enough for a five-star trip to New Zealand, including flights, hotels, meals, and a Lord Of The Rings tour. I have learned the art of the Quick Comeback. If someone is being rude and intrusive while my son is having a hard time, I am no longer shy about saying things like, “My child has autism – what’s your excuse?”
  8. Distraction. This is a concept that most autism parents are well aware of. Sometimes I can just tell that a meltdown is just around the corner, and I want to do everything in my power to head it off at the pass. I get favoured activities or treats within arms’ reach, try to stop or somehow control whatever is winding him up, talk to him, sing to him, throw out mental arithmetic problems at him (the kid’s like Baby Rain Man with numbers – what can I say?) I have about fifty-fifty success with my efforts – but I will take that over ninety-ten in favour of the meltdown.
  9. Planning for Change. If there’s one word that makes autism parents everywhere tremble with fear, it’s change. Our kids don’t do well with change. They like the same places, the same people, the same routines. When we go on vacations, we have to take most of our family’s belongings with us so that we can replicate our home environment as closely as possible. Every summer, we put together social stories in preparation for the new school year, that include pictures of the new teacher and classroom, and we take our son to the school so he can get used to – or stay used to – playing in the playground there. I contingency-planned my wedding like it was going out of style – and all of those efforts paid off.
  10. Appreciating the Little Things. Where an autism parent is concerned, there is no such thing as a small accomplishment. All achievements, ranging from new words added to the vocabulary to giant cognitive leaps, are causes for celebration. As the parent of a child with autism, I have really learned how to smell the roses. Life is full of challenges for me and my family. But every single day is a blessing, and every single night, when I kiss my children goodnight, I am grateful for the people they are. And no matter how hard the day has been, I feel like the richest person on the planet.
Filed Under: autism, Children, life, parenting, Special Needs Tagged With: , , , , , ,
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Autism Diagnosis: Changing The Landscape

January 13, 2012 By

For the benefit of people who are not involved with autism, I will start today’s post with a brief primer on what an autism diagnosis actually means. People who are affected by autism and already know this stuff, bear with me.

Most medical conditions are stated in absolute terms, based on whether they are present or not. Think of pneumonia, Downs Syndrome, or meningitis, to name just a few. The severity of symptoms may vary from person to person, but that does not change the diagnosis.

Autism is a spectrum disorder, and where the individual falls on the spectrum can determine his or her diagnosis. One of the more common autism rating scales is called CARS, or Childhood Autism Rating Scale. For diagnostic purposes, anyone who scores over 15 on CARS is regarded to have an autism disorder. The lower numbers – from 15 to about 25 -  will result in a more specific diagnosis of Aspergers – what some call “high functioning autism” (the use of this term is highly contentious). At the other end of the scale, from about 40 to the upper limit of 65, there are people who receive a diagnosis of autism. And in the middle are the people who are diagnosed with something called PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified).

Although people in all three groups are deemed to have ASD (Autism Spectrum Disorder), the specific diagnosis – and therefore the services they receive – will depend on where they fall on the spectrum. It is worth noting that a child may, over the course of his or her life, be diagnosed with all of three things at one point or another. My own son, for instance, was initially diagnosed with autism. His current clinical diagnosis is PDD-NOS.

Primer over. Now I will get to the point of today’s post.

Now, the diagnostic criteria for autism disorders could be changing, and these changes could have some far-reaching effects on the services that are received by individuals who are on the spectrum. Whether the changes would be good or bad is a matter up for debate.

According to the proposed criteria laid out in DSM-V (Diagnostic & Statistical Manual of mental disorders), there will no longer be individual diagnoses of Aspergers, PDD-NOS and autism. Instead, everyone on the spectrum will get a clinical diagnosis of ASD.

This can be good. In the current diagnostic world of DSM-IV, many people on the spectrum do not get the services they need because they are deemed to be “high-functioning”. With a common diagnosis for everyone, the world of services could be opened up to a host of people who have previously not benefited from it.

But.

Let’s take a look at how the actual diagnostic criteria themselves may be changing.

In DSM-IV – the world as we know it today – a total of twelve symptoms are divided into three groups:

  1. Qualitative impairment in social interaction.
  2. Qualitative impairment in communication.
  3. Restricted repetitive and stereotyped patterns of behaviour, interests and activities.

The individual has to display at least six symptoms, with at least two from the first group, and one each from the second and third groups. If this condition is met, along with a couple of other factors, you have your diagnosis – whether it’s Aspergers, PDD-NOS or autism.

The proposed DSM-V has the following stipulations, all of which must be met:

  1. Persistent deficits in social communication and social interaction across contexts. Individuals must display all of three symptoms that are worded in very specific terms.
  2. Restricted, repetitive patterns of behaviour, interests or activities. Individuals must display two of four symptoms that again, are very specifically worded.
  3. Symptoms must be present in early childhood.
  4. Symptoms together limit and impair everyday functioning.

The groupings of symptoms, in conjunction with the way in which they are worded, means that it will be more difficult to get an ASD diagnosis, particularly for individuals on the “Aspergers” end of the spectrum. There is a segment of the ASD population who are regarded as “high-functioning” relative to people more severely affected by autism. These people may not meet all of the criteria laid out in DSM-V.

What this means is that although the actual incidence of autism will continue to climb, we may see a decline in actual diagnoses. The general public will be misled into believing that the autism epidemic is being brought under control.

And a host of people who need services could be denied them, simply because they don’t meet the right combination of conditions listed in a manual.

It is important to note that the DSM-V is, at this stage, a draft. It will in all likelihood pass through a host of revisions based on feedback and testing. The DSM-V that is ultimately released could look very different to what is discussed here.

It will be interesting to see if, and how, the autism diagnostic landscape will change.

Filed Under: Aspergers Syndrome, autism, Autism Diagnosis, Autism Services, DSM-IV, DSM-V, PDD-NOS Tagged With: , , , , , , ,
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