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Note To Self

22 Apr

 

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 22 – The things we forget: Visit http://thingsweforget.blogspot.com/ and make your own version of a short memo reminder. Where would you post it?

A few nights ago I was late getting home from work because of a delay on the subway. This meant that after a day that had already been long and frustrating, I had to compress the evening’s usual chores and and activities into a shorter amount of time. As soon as I got home, I started doing what I needed to do, without giving myself any time to unwind. I efficiently moved from task to task, supervising homework, getting the laundry on, preparing packed lunches for the following day, eating dinner that, thankfully, my husband had already made.

I was stressed about the time, trying to get everything done and still get to bed at a reasonable hour. When the kids were slow to put on their pyjamas, I was a little more brusque with them than I really needed to be. Later, after they were sleeping, I prepared the coffee machine for the morning, as I always do. While I was measuring out the coffee, I accidentally spilled a little bit of it on the kitchen counter.

And I totally lost it. That little bit of spilled coffee turned out to be the straw that broke the camel’s back on that particular day. I didn’t get mad and throw things, but I broke down crying. I sat down and put my head on my desk and just sobbed. For those few minutes that I lost control, the coffee represented the general disarray of my entire life.

When it was all over, I inevitably felt a little foolish. A meltdown over spilled coffee that took all of three seconds to clean up? What was that about?

The truth is that all of my concerns about that evening had been about inconsequential stuff. So what if I was half an hour late getting home? It wouldn’t have been the end of the world if the kids had been fifteen minutes late getting to bed. That load of laundry could have waited until the following day. I could have set up the coffee machine in the morning.

But instead, I allowed myself to get absolutely wound up over things that really didn’t matter. And when you consider all I have to deal with that does matter, that seems counter -productive. Very often I am so overwhelmed by my full-time-job-mom-of-two-with-special-needs-child existence that the slightest things can just feel like a major catastrophe to me.

Sometimes I need a reminder to pick my battles, and avoid getting stressed about things that, when it comes right down to it, have absolutely no bearing on the quality of my life. I need to learn how to let the little things go so I can devote more of my energy to the big things.

And I shouldn’t pet the sweaty stuff, because that’s just gross.

(Photo credit: Kirsten Doyle with a little help from http://wigflip.com/superstickies/)

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The Stories I Tell And Why I Tell Them

4 Apr

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 4 – I write about my health because…: Reflect on why you write about your health for 15-20 minutes without stopping.

When I was young, I had a somewhat cavalier attitude towards my health. This was partly due to the invincibility and stupidity of youth, and partly because there were some things happening in my life that relegated my health to the backseat. I really had better things to think about than whether I was eating enough spinach.

Of course, my lifestyle through my early twenties didn’t really lend itself to healthy thinking anyway. I was fond of pasta, Coca Cola and beer. I was not fond of vegetables, exercise or moderation. Water was for swimming or showering in, not for drinking. My daily life was punctuated with cigarettes. I didn’t really care whether I had enough money for groceries as long as I had a six-pack in the fridge and some cigarettes in my purse.

One morning I woke up and realized that I was tired of being a smoker. And just like that, I decided to quit. I reasoned that while I was quitting, I may as well fix up the other troublesome aspects of my lifestyle. And so I gave up the soft drinks, reduced the alcohol consumption and took up running.

In the years since then, more things have happened that have forced me to take a close look at the health of myself and my family. I have learned better ways of running, I have battled some mental health issues, I have lost family members to cancer and I have become an autism mom.

The subject of health is not something I can ignore or take casually. So much depends on it, and it has far-reaching effects on my children. I am mindful of the fact that for the next few years, I am making decisions about food and activity on their behalf. And for their sake, I have to get it right.

Through my journey, I have learned a lot and discovered that there’s so much I still don’t know. Through my writing, I can share what I have discovered and reach out to people who very often have answers that I need. I have come across people who know exactly what I’m going through, making me feel less alone. In sharing a piece of my life, I have found a voice that I might not otherwise have.

I write because I love to, and because – hopefully – I tell stories that people can either relate to or be informed or entertained by. And as long as I think my voice is touching at least one other person, I will continue to write.

(Photo credit: Kirsten Doyle)

Superhero Wannabe

3 Apr

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.)

A Place To Stand

2 Apr

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.)

My Husband Doesn’t Believe Me

12 Mar

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.

Bullying: Is There A Solution?

29 Feb

In the wake of Monday’s tragic school shooting in Chardon, Ohio, I find myself wondering why we as a society have so much trouble dealing with the problem of bullying. I asked this question on Facebook on Monday night, and more than one person accused me of blaming the victims.

I want to make it clear: I am not blaming the victims, nor am I condoning these acts of violence. I am merely making the point that in spite of the fact that bullying has been blamed for a number of tragedies over the last fifteen years or so, we have made little progress in addressing it.

It would be unfair for me to say that nothing has happened. I would be willing to bet that there were no formal anti-bullying policies in place when I was in high school. That at least has changed: it took me about fifteen seconds on Google to find my local school board’s policy. This does represent a start, even though the wording of the policy is frustratingly vague. It places the onus on schools to figure out ways in which bullying incidents can be reported and dealt with. When I called my son’s school to find out what their school-specific policy is, I got an expected but highly unsatisfactory answer: It depends on the circumstances. I also got the platitudes that schools think are sufficient for parents: We do not tolerate bullying in our school. We take this issue very seriously. Instigators of bullying are dealt with severely.

That’s all great, but what does it actually mean? We don’t need policies that are there primarily to make parents happy enough to sit down and shut up. We need action plans that are followed through on. Here are a few things that I would like to see in place:

  • Education sessions for parents that will teach them to recognize (a) that their child is being bullied, or (b) that their child is bullying.
  • Anti-bullying education in the curriculum for the kids. Right from the get-go, children need to be taught what their rights are and how they can ensure that they are being respected. They should also learn about what behaviours constitute bullying. While this is more intuitive for most older kids, young children may not recognize the potential harm of certain behaviours.
  • Support for the victims of bullying. They should have a way to report their experiences without fear of reprisal, and they should be assured that action will be taken. The onus should not be on them to “stand up to the bullies”.
  • Support for the instigators of bullying. These kids could have something going on in their lives that’s making them do what they do. They shouldn’t just be suspended from school and given a warning not to do it again. Steps should be taken to find out why they are doing it in the first place and what help can be provided to them.
  • Open lines of communication between students, teachers and parents. Teachers and parents should be working together to ensure the safety and wellbeing of our kids, and our kids have to know that there is someone for them to go to when they need help.

Bullying is not a problem that can be solved by letting the kids sort it out. We cannot tell one person to stop doing something, or another person to retaliate. Bullying is a social problem that can only be solved by everyone involved working together in a constructive way, to do what is best for the kids.

10 Useful Skills For Autism Parents

23 Jan

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.