Thursday 31 January 2013

Thoughts on Families from Ashley Judd

I picked up Ashley Judd's biography All That Is Bitter And Sweet at the library.  It's an interesting read, mostly focused on her international work.

Some of what she said resonated with me.  She talked about how people assumed she was okay growing up because she was self-sufficient.  In reality, she was horribly depressed and being neglected, but because she got to school, got good grades and was able to manage, the adults around her assumed everything was all right.

I think we've all had the experience of the silent scream.  Times when the pain is ready to make us explode but we assume a social mask and continue on.  After all, that's the definition line between mental illness and ordinary experience.  It's not an illness until it affects your ability to cope and function.

There was a line in Buffy where (having had telepathic powers) she explains that the reason why "no one is reacting to your pain because they're too busy screaming out their own."  Happiness has always struck me as an expanding emotion.  When you're really happy, it's hard to believe the rest of the world isn't happy with you.  (Which can be why new couples are so exhausting.)  But we're all too willing to believe our pain is unique.

Another resonant moment was when she described feeling humiliated when she realized her mother and sister were encouraging her to sing because they found her off-key renditions funny.  Not because they thought she had talent.  She talks about her feelings being continually shut down by her family as unnecessary and inaccurate.  Those stories spoke to me because I've long felt we don't respect children's feelings as a society.  We're not particularly good with anyone's feelings, but children are often told they shouldn't be upset or frightened when they clearly are.

I think it's still important to teach children how to deal with those feelings and how to overcome them.  But pretending they're wrong isn't a good start.  When feelings are dismissed, people tend to dig in with them, insisting on their own experience.  It can end up intensifying the problem.

Every time I read one of these biographies, I'm struck by how universal certain experiences are.  We all go through pain and sometimes we fall and sometimes we muster through.  It doesn't matter if a person grew up as virtual (or actual) royalty or anonymously.  It seems to be a universal that life sucks sometimes.

Wednesday 30 January 2013

Temper Tantrum in the Parking Lot

Today as I'm running around getting stuff done for the lunch, Nathan decides to throw a tantrum in the mall parking lot because he wants to go back into the mall and come out the same door we went in.

These little rigidities of his still surprise me sometimes.  For the most part, he's fairly adaptable and easy-going.  And then he'll set his foot down about something so incredibly odd.  When he was two, he went through a three month period where only Daddy could change his clothes.  Which would have been fine except for me being the parent at home and Nathan being unable to abide the slightest stain or wet spot.

He would scream for hours about it, completely unwilling to allow me to change his shirt or pants but also unable to tolerate the dirty clothes.  I couldn't even get him stripped to let him run naked until Daddy got home.  It was a very long few months.

We were doing the baby steps process, trying to get him comfortable with me handing Daddy the clothes (this still could be enough to set up a tantrum).  The plan was to continue to gradually increase my involvement until the problem was resolved.

Except Nathan skipped some steps.  One day out of the blue he announced that he wanted me to get him changed.  I have no idea why I was unacceptable before and suddenly fine again. 

I've always told people that Nathan is my poster child for early intervention.  Because treatment started almost a year and a half (comparitively) before Alex, Nathan has done much better at integrating.  Sometimes I have to remind myself that Nathan does have challenges of his own which I need to be sensitive to.  Alex's challenges are so much greater that I end up focusing much of the household decisions on what will make him comfortable rather than Nathan.

I think this is a common problem when a child with autism has a sibling.  (Or any child with special needs or circumstances.)  The needs are so much greater that the autistic child ends up taking up the lion's share of resources and attention.  It's hard to argue against it when they need it so badly and it makes such a difference in their prognosis.

But at the same time, there's still a sibling with their own unique challenges and identity who needs to be cherished and nurtured.  It's difficult to strike the right balance and no matter what I do, there's always some residual guilt.  I want to be 100% there for both of them, but it's mathematically impossible.

So I try to make sure they each have good Mommy time and I try to be sensitive to both of them.  I'm not perfect but I'm making the effort, which has to count for something.

Tuesday 29 January 2013

Countdown to Lunch

I've been coordinating ORWA's annual Valentine's Day Lunch and I've hit a point of exhaustion.  This is a pretty typical cycle for me.  I start off enthusiastic and then nerves start to set in.  I get anxious about whether or not the event will be a success; will I be able to do the work; will people be pleased with what I've done.

At first, I can channel the anxiety into the tasks which need to be done.  Which ends up being pretty productive. 

But now almost everything is done that I need to do in advance.  So I have no focus for the anxious energy.  Channelling it into other projects doesn't work.  I'm starting to wear down and wish I could just be done with the whole thing.  Which isn't a great mindset for having fun at the event.

I really need to find a better method for dealing with these things.  Or at least stop volunteering for extra work.

I'll let you all know how it works out.

Monday 28 January 2013

Human Library Experience

Our local library had a very interesting special this weekend.  You could "borrow" people from the community for a 20 minute interview.  I took advantage and had a wonderful conversation with a local police officer.

Now, I enjoy Castle, Law and Order, Criminal Minds and many other fine cop dramas.  But I don't make the mistake of assuming they reflect reality any more than ER was an accurate record of hospital visits.

He had some great stories about hair-raising arrests and his journey to becoming a police officer.  It was something he worked very hard to do and it wasn't a straightforward accomplishment.  As someone who has also struggled (and is struggling) to achieve my dreams, it's a story I can connect with.

As we're speaking, I have plot points and character ideas dancing in my head, trying to come together to form a coherent story.  But I had to force myself to concentrate and not fly off into creative-land.  There were only 20 minutes, after all.  Not a lot of time for an in-depth revelation.

He generously offered to let me get in contact with him again to ask him more questions.  He even offered to let me to a ride along (and the thought of that had me grinning for most of the afternoon.  I mean, come on, how cool is that!).

My big impression was of someone who recognizes how fragile life and plans can be.  He's worked hard but hasn't lost his sympathy for those who haven't made it.  He's passionately committed to protecting the community but equally committed to upholding the law.  He's found a balance between work and home, keeping the nastiness separate from his home life.  He was someone who is living their dream and found it to be even better than they could have imagined.  That's a rare thing in life.

On a logistical side, I had a few challenges with how the interviews were organized.  I wasn't allowed to take notes.  Forbidding audio or visual recordings I get, but I think CBC got a little paranoid on that front.  So I ended up scribbling notes in my car for twenty minutes after the interview, trying to recapture everything.  I got three pages and very cold, stiff fingers.  The other major problem was that I wasn't allowed to sign up for more than one interview, which meant I missed out on some other interesting conversations I'd hoped to have.  (A lot of the interview slots filled up in the first fifteen minutes, making it impossible to sign up for another one.)

Overall though, I think this is a great idea.  As a writer, it's a huge opportunity for me to make contacts and learn about people I don't necessarily come into contact with.  As a community member, it's a way to make the community more inclusive and less judgmental.  I'm all for that.

As much as I'd love to sign up immediately for that ride-along, I think I'll pause and let myself finish Revelations first.  But I think he would make an amazing base for the police officer in the story who is helping Michael, my main character.  Assuming he would be okay with that, of course.

Sunday 27 January 2013

I Get To Be A Test Reader

One of the authors in the ORWA group asked for a test reader for her new historical novel.  I offered and she accepted.

I'm quite excited about this but also a little nervous.

I'm a fairly demanding reader.  I expect a lot from the authors that I buy and I can get very detail oriented when it comes to language.

My concern is, how much detail should I go into?  There's a fine line between providing editing critiques and expecting the author to write it the way you would have.  This is a little different than working on a friend's story.  There's a good relationship underneath to help smooth over any professional pinches.  I don't know this person except professionally.  I want to do a good job but also don't want to overstep my boundaries.

I think I'll start with a chapter by chapter analysis.  I'll send the first chapter and ask her if it's too much detail or if she wants more.  If I've gone too far, then she can let me know and I'll scale back.

Hopefully the fine art of diplomacy can allow me to still be effective without hurting feelings.

Saturday 26 January 2013

Searching for Shingles

I am astounded by the sheer number of choices available for building a dollhouse.  Websites with pages and pages of different types of siding, roofing, little embellishing touches.  For someone who has always loved miniatures, it's like waving crack in front of an addict.

I could see me spending a great deal of money if left to roam free.

Unfortunately, despite the scope, I cannot find roofing tiles of the type I want.  There's some lovely stuff out there but it costs too much.  And the stuff I can afford, I don't like.

So it looks like I'm going old-school hand-crafted.  As in crafted by my own hands.  Which will be hugely time consuming.

On the plus side, I do have a template and I like having something to do with my hands while I watch TV.  Making jewelry, cross-stitching.  Now I'll just add shingle-making to that list.

Looks like I'm off to find dark bristolboard to make my new roof.  I tried black foam (because it's so easy to cut with an art knife and won't fade in the sun) but it's too thick.  The tiles don't lie down properly.

Friday 25 January 2013

Grieving for What Might Have Been

I think it's really interesting that as a society we teach our children and teenagers how to perform CPR but not how to help someone who is grieving.  The odds of needing to resuscitate someone are pretty slim.  But we all know someone going through a tough patch.

One of the things which can be very touchy for families with autism is when you go through the process of grieving what might have been for your child.  Sometimes it can feel as if the world is narrowing with every step.  Dreams of CEOs or pro athletes can become dreams of your child being able to move out of the house and not needing constant care.

I find this usually produces one of two reactions.  Either anger (how dare you be upset your child is less than perfect, there are so many people who have it worse than you) or the cheer-up reflex (everything will be fine, don't lose hope, sing a rainbow, tra-la-la). 

Why isn't it okay to be unhappy that your child's potential has been limited?  Why isn't it okay to be upset that their path in life will be more difficult than expected?  Heck, on a selfish note, why isn't it okay to be upset at the major life-changing event which has landed in your lap? 

Is it because no one likes to remember that we are still a judgmental society who are cruel to those who don't fit in?  Is it a remnant of some kind of contagious magical thinking where we're afraid something 'bad' will rub off if we acknowledge it?  Is it a desire to raise the spirits of someone we care for, whether for ourselves or for them? 

Probably a little of all of the above.  No one hopes their child will be autistic.  It's something which families and parents learn to deal with but I doubt that even the "autism is the best thing which ever happened to us" cheerleaders would choose it if they could go back and make the change.

This isn't a rejection of the child.  I think that misconception is what sparks a lot of the anger.  If a child was diagnosed with cancer or had a severe physical injury, no one would be surprised if the parents were angry about the disease or spent some time grieving the injury. 

I think it's important to give yourself time to grieve.  Our society rewards stuffing our feelings in a bottle to get the job done but this isn't a short-term white-knuckle situation.  Keeping feelings stuffed is exhausting and they still tend to spew out at the worst possible times. 

I grieved for the child I imagined.  I let it fly away.  There are still points where I find myself grieving as something hits me and I have to wonder if my children will be able to accomplish it.  I've also grieved for the life I had imagined for myself.  My path will be different than the one I'd planned.  None of this means I love my children any less or will fight for them any less.  In fact, I believe it makes me able to fight better because I can bring my whole strength to them rather than having to keep some of it diverted to contain unpleasant thoughts.

The most wonderful reaction I experienced after the diagnosis was from my best friends.  I returned from the appointment and was in tears.  They held me and didn't say a word.  Whether through compassion or lack of knowing what to say, it was exactly what I needed.  The luxury of being allowed to feel without judgment or commentary.  It's a rare thing in this world and I treasure it greatly.

The idea of letting go of emotional control can be frightening.  But the doing of it is so much easier than fighting against it.

Thursday 24 January 2013

Notes From Nathan

I've been introducing Nathan to comic books.  He likes the Avengers.  I'm geekily proud.

I've worked with him on the concept of good guys and bad guys.  That bad guys may look cool sometimes but they never win.  (A must with a child who gets as anxious about outcomes as Nathan does.)

We were watching episodes of Reboot on the iPad and the villain, Megabyte, went into his signature evil laugh.

Nathan shook his head.  "Laughing doesn't make you a good guy."

Take that, Megabyte.  :)

Wednesday 23 January 2013

Les Miserables - Movie Review (Spoilers)

For the record, I'm not talking spoilers about what happens in the movie since I assume almost anyone who goes to see it will probably have a passing familiarity with the play.  I'm talking spoilers about how the plot has been adapted between the mediums.

Legal disclaimer done ... I loved it.

Now, I love the stage play.  I have been singing along to the London Cast soundtrack for over twenty years.  The combination of the music and story creates an almost perfect pathos that never fails to move me emotionally.

When I saw the poster a few months ago and learned this was coming out, I was immediately sold on Hugh Jackman as Jean Valjean.  He's got a gorgeous voice (and body) and the acting chops for the role.  I had my doubts about Anne Hathaway, who can sing but who I have trouble believing in non-adolescent roles.  I was shaking my head about Russell Crowe.  Had no idea if he had vocal talent but was skeptical.  Besides, I love Roger Allam, who played Javert in London.  He had a commanding stage presence and a bass voice that just sent shivers up my spine.

Since I couldn't see the movie right away, I indulged with the soundtrack.  More concerns started popping up.  Jean Valjean's signature piece "Who Am I?" wasn't on it.  And the pieces with Hugh Jackman sounded very thin compared with Colm Wilkinson's deep chested delivery.  But everyone I knew who had seen the film absolutely loved it.  I was still determined to go.

And all my concerns evaporated like rain from cobblestones.

The performances completely distract from any vocal weaknesses.  Russell Crowe did a great job at portraying Javert's fanatical devotion and inflexibility.  And it turns out he can sing (mostly).  Anne Hathaway made me cry over and over.  And Hugh ... did what Hugh does best.  But the real surprise was Helena Bonham Carter as Madame Thenardier.  She absolutely stole every frame of film she appeared in.

One thing did throw me off sometimes.  There were some lyrical changes to the songs.  Almost every production does this but since I've been singing the same lyrics for 20 years I found it a little jarring. 

There were some plot changes that I thought heightened the story.  In the film, Jean is actively trying to hide from Javert when Fantine is sacked by the foreman.  It explains what to me was always a surprising lapse of Jean's character.  And at the end, only Fantine escorts Jean to heaven.  Having Eponine there never made sense to me since those characters had no real connection.  (And I've always felt a little sorry for actresses playing Fantine since they're in the first hour and then have to sit for another hour and a half or more before the finale.)

I also liked the juxtaposition of "One Day More" and "Do You Hear The People Sing".  It's been a long time since I saw the play but I'm fairly sure that wasn't how it went.  But it should.  It's powerful.  But then you'd have to get rid of intermission and there'd be a problem.

Generally I am not happy with unhappy endings.  (Ask Dave how much of a fit I pitch when they kill Fred in the episode "Hole In the World" in Angel.  And I'm not just talking the first time I saw it.  Every time with the DVD.  It's not pretty.)  But somehow Les Miserables transcends that.  The wrong girl gets the guy.  Jean never gets to live in peace.  Javert kills himself rather than invest in character growth.  And Eponine and Fantine's lives just suck, to put it plainly.  But I still love it and even though it makes me sad, it's a good kind of sad.

Awesome movie.  Going in the collection.

Tuesday 22 January 2013

Single Parent Testing Night

Although the figure is disputed, both Oprah and Jenny McCarthy claimed that 80 percent of families split up after a diagnosis of autism.

Certainly any kind of life-changing event can end up revealing the cracks in a marriage although I'm skeptical of the high percentage.

Tonight, Dave is off at a local hockey game.  He went straight from work so from the morning on, I've effectively been a "single" parent.  I tend to use these evenings to remind myself of how much he does to help.  To be clear, I'm not planning divorce but it's a good reminder to have in my head when he frustrates me by accidentally shutting off the alarm or any of the other minor really irritating habits any spouse has (including me).

It's been a challenge tonight.  Even though I cheated and ordered pizza so I wouldn't have to do as many dishes.  There's a lot of work to take care of and with only one person to do it, I feel like I've been flying back and forth without any time for myself.

It makes me more appreciative of all that Dave does. 

And tomorrow night, it'll be his turn while I go out to a movie.  :)

Monday 21 January 2013

When Your Family Doctor

One thing which has consistently surprised me as I move in the autism world is how many family doctors don't take parents' concerns seriously.

Part of me can understand why.  After all, we've all seen the footage of the hysterical first-time parents (and we've all usually made some doozies ourselves).  I rushed Alex to our family doctor because I thought he had crystals in his urine but it turned out it was the silicone from small rips in the diapers.  Okay, oops.

But if a parent is worried about their child not communicating or about strange repetitive behaviours or self-injury, then there should not be a dismissive automatic "kids are like that" approach.  It would be great if doctors had the time to ask questions rather than rushing through appointments to cram the maximum number of visits into a day.

My doctor not only dismissed all my concerns about Alex by effectively telling me not to worry my pretty little head about it, when I told him about the diagnosis, he shared with me his belief that autism wasn't real, it was just North American parents being too demanding of their children.

The final straw was when I was concerned that Alex might be having absence seizures.  (He would pause as if frozen and stare into space, sometimes for over a minute.  If you called his name or touched him, he wouldn't respond.)  He reluctantly agreed to a consult with a neurologist but then insisted on spending twenty minutes lecturing me about my weight.

Excuse me?  I don't care if I'm too fat to waddle through the door or if standing up leaves me out of breath.  If I'm concerned my five year old is having seizures, this is not the time to bring it up. 

We'd been looking for another doctor for some time previous to that but after that I stopped going to him entirely.  If we needed something, I went to a walk-in clinic.

This person is no longer my family doctor.  It took me two years to find someone else, but eventually I did.  She's been very good about listening to me and if she doesn't always know the answer, she's always happy to research or refer. 

Another note in her favour, she spotted Dave's enlarged thyroid and realized he might have cancer.  Our old doctor refused to even test his thyroid even though Dave had all the symptoms of low thyroid hormones, with the exception of irregular menstrual cycles.  Looking back at family pictures, there is a visible lump in Dave's neck for at least the last seven years. (At least, there is now that we know what to look for.)

The point of this exercise is not just me venting about my old doctor.  It's to let you know how important it is to have a supportive pediatrician or general practitioner.  If your doctor is reluctant about referrals or tends to dismiss you, think very hard about finding someone else.  At the very least, talk to them about their concerns and find out if you're dealing with a potential roadblock.

Sometimes doctors make mistakes and that's part of being human.  I've also known several doctors who were initially dismissive but apologized once they realized autism had been overlooked.  In an ideal relationship, you bring initimate knowlege of your child and the doctor brings detailed medical knowlege and the two of you work in partnership to figure out what's wrong.

Sunday 20 January 2013

Thoughts on Slut-Shaming

Dr. Phil had a show last Friday featuring various points of view on the debate around slut-shaming.  For those (like me) who didn't realize it had a special name, this is the practice of labeling someone a slut and attempting to shame her into an "acceptable" appearance and behaviours.

Dr. Phil claimed this was a new phenomenon.  I guess he hasn't heard of The Scarlet Letter or public penances ... or a fair chunk of the Inquisition.  But that's a separate point.

There are only two points of view on this debate worth considering.  People who attempt to bully someone into changing their behaviour are bullies and there's no acceptable reason for this.  Ever.

But it is worth looking at the views of those who call themselves modesty-encouragers and those who want to reclaim the word slut in triumph.  Modesty encouragers believe it's important to encourage young women to dress modestly and treat themselves and their bodies with respect.  On the other side of the debate are those who insist no one should ever be judged on their appearance and clothing choices should not be considered justification for assault.

It's hard to disagree with any of those points.  Both of these camps are lobbing shots at each other but they're fighting on different battlefields.  Those who want to encourage modesty are looking at the world as it is and saying, this is a dangerous place and young women should not put themselves in danger.  The other side does not accept the status quo and insists change has to come on the other side.

Personally, I agree that the perspectives of the world need to change.  It doesn't matter if someone is into group exhibition sex, if he or she says no, then the sexual encounter needs to stop.  End of story.  It's a personal decision which should never be coerced or preempted.

But I also agree that young women need to protect themselves.  We're not in the promised land of equality and mutual respect yet, so don't assume those protections will always apply.

My personal compromise on this issue is a belief that young women should be taught two things.  First, how to handle it when someone gets aggressive in pursuing her.  Second, how to be comfortable saying yes.

If I had a daughter and she wanted to go out in short skirts and skimpy tops, then I would insist on her knowing her own boundaries and being able to protect them, both emotionally and physically.  I would prepare her that some people won't understand and will be quick to judge her.  I would explain that they will use shame as a tactic and how difficult it can be to tune out those messages.  And then I would let her do what she chose.

Instead, I have sons and thus find myself worried about counter-protest signs saying "Don't tell my daughter how to dress, tell your son not to rape."  Even by the most generous statistics, the male rapist is the minority.  The vast majority of men do not believe it is acceptable to force a woman to have sex against her will.

Let's isolate those individuals as the exceptions they are, rather than painting everyone with a brush of complicity.  They are acting against the stated values of society, as defined by our laws. 

Imagine what we could do if we all stopped fighting and screaming at each other and focused on the real target.

Saturday 19 January 2013

Joss Whedon Quotes to Make You Smile

"Remember to always be yourself ... unless you suck."  (I'm getting that one printed on a t-shirt)

"The two things that matter the most to me: emotional resonance and rocket launchers.  Party of Five, a brilliant show and often made me cry uncontrollably, suffered ultimately from a lack of rocket launchers."  (Looking back, rocket launchers on Buffy, Angel, Serenity and I think there was one in Dollhouse, too.  Joss might be on to something here.)

"No matter how far you've sunk ... there's always more down."

Friday 18 January 2013

The Golden Rule is Backwards

Everyone knows the famous golden rule: he who has the gold, makes the rules.  That one is fairly straightforward.

But the other golden rule?  Do unto others as you would have them do unto you.  That one is backwards.

It should be: do unto others as they would have you do unto them.

Treating people the way you would like to be treated is a nice idea but it ends up being a little narcissistic at the end of the day.  Not everyone wants to be treated like me.  Or you.  Or any other random person you might grab.

When I'm upset, I want ice cream, chocolate and something exploding on TV.  Other people might prefer beer and loud music.  Or a warm blanket and friends sympathizing.  Or duck juggling.  (I don't judge.)

My husband prefers quiet when he's upset.  He doesn't want to distract himself with something.  He wants to have the mental space to sort through what's going on without any social pressure.  If I try to force feed him ice cream and make him watch all four Die Hard movies, it won't work for him.  If he leaves me in a dark room to stew, it won't work for him again because I'll come out twice as irritated as I went in.

Figuring out what other people want is a matter of paying attention and using imagination.  In other words, empathy.  And empathy is a great thing.  It's actual mind reading (although significantly less accurate than the TV version). 

I try to do this a lot with my kids.  Alex does not like a lot of fuss and interaction.  Social interaction is work for him.  But at the same time, he wants to know he's loved just like any other child.  We've worked out a strategy of drive-by cuddlings.  He'll be walking by or I'll go up to him and give him a mess of kisses or hugs.  And then I let him walk away.  If he wants more, he'll come back or linger.  But the smile on his face tells me he's gotten the message I wanted him to have.

Because in the end, I don't think it matters what message I intended to send.  It's the one he gets which is important.

Thursday 17 January 2013

Tax Info to Know and Share

I'll start by saying I'm not a tax expert but this is something I think all diagnosed families should know.

Canada's Disability Tax Credit is something you want to look into if you've had a child diagnosed with autism.

It qualifies you for a lot of the government programs and allows you to claim your child's therapy as a medical expense on your income tax.  Autism is expensive and while the refund won't change that, every bit helps.

You have to have a doctor fill out the form.  If your family doctor is uncooperative, talk to the doctor/psychologist who did the assessment and gave you the diagnosis.  The form covers the level of impairment and intervention required for daily life.  To qualify, the impairment has to have existed or be expected to exist for 12 months.  Even if your child was just diagnosed, they are considered to have been autistic from birth.  So you can apply for this year and ask to have your previous years re-evaluated.

The one thing you need to do is keep your receipts.  Every receipt for therapy and intervention, buying special equipment, the fees for doctors to fill out forms.  It makes for a lot of paper, but CRA will insist on seeing it.  We've been audited every year after filing our taxes and every year we drop a one inch thick stack of paper on their desks to prove we have spent a significant portion of our income helping our children.

Another note, you will have to keep all those receipts for seven years in case CRA ever decides to look at them.  We bought a filing cabinet and it was wise decision for keeping our paperwork straight.

There is a whole list of things you can claim.  It ranges from the cost of caring for a service animal, ambulance trips, special equipment, gluten-free foods, moving expenses (if you have to relocate to be closer to services), medical tests, etc.  They all need receipts.

A lot of these things require a prescription.  Check the list and make sure it's the most recent copy.  While this is the most up-to-date currently available, CRA may put out an updated version as we get closer to tax time.

You can also claim dental services, prescription drugs and medical expenses for the whole family, not just your child.  If you and/or your spouse go into therapy to deal with the strain and anxiety, that's claimable. 

Only one person can claim the entire medical expense, so it makes sense to figure out who gets the most reimbursement by claiming it.

It's a pain keeping track of all the paper but it's worth it to have that little extra bit of respite.  (And it was funny to watch the auditor's expression when we dropped the stack of paper on his desk.  Clearly, he was not used to prepared families and had been ready to intimidate and threaten.)

The government may not have done as much as it should have to help our children.  But this is one area they got right.

Wednesday 16 January 2013

A Lucky Child

I've been reading Thomas Buergenthal's memoir A Lucky Child about his experiences during the Nazi regime and surviving the ghettos and concentration camps.

He spends a great deal of time showing the wide diversity of human behaviour during those years.  Some were broken and reformed as monsters, others died with their humanity intact.  Some who had no reason to attack did so and others who were given every reason refrained.  It's a heartbreaking window into the life of a young boy faced with impossible challenges.  He has to decide whether or not to go to the infirmary to have his blackened, frostbitten toes amputated, knowing that if he does, he risks being herded into the gaschamber during a cleansing.

As a mom, I was almost too grief-stricken reading it to cry.  I imagined what it must have been like for his mother, being terrified and helpless for her family's survival.

Of course, I also found myself wondering what would happen if my family was placed in those kinds of survival situations.  It's likely neither of my children would have survived the euphemistic "selection" process where only those able to work were allowed to live.  And I don't know if I could have taught them how to hide and take care of themselves. 

It's a frightening thought experiment to go through and emphasizes how dependent both my boys are on support at this time. 

Buergenthal opens his book by apologizing for unleashing another Holocaust memoir on the world.  He hadn't planned to publish but family and friends encouraged him.

The Holocaust isn't unique but it still stands as one of the better documented tragedies, giving us the best chance to learn from the mistakes of history.  Stories like this remind us of the reality behind the mind-numbing horror of statistics.  So these memoirs and stories are necessary.

We had a copy of Spielberg's Schindler's List but it appears to have vanished at some point from our collection.  It's not surprising.  I don't think I ever watched the video, although I had seen the movie in theatres.  There's no hiding from the truth in Spielberg's movie.  The scale and humanity are both brought home in uncompromising images.  I felt it was an important movie to own but I must admit it was never something where I thought to myself: I have a couple hours to kill, I'll watch Schindler's List.

I will get myself another copy to hold tight for the future because it is something I want to show Nathan and Alex when they get older.  I'll have to time it right because I doubt I'll get more than one shot at it.  They have to be old enough to understand what they're seeing without being so frightened by it that they shut down.  But still young enough to listen when their mother tells them to sit down and watch.

I shielded both my boys from the Newtown shootings.  Neither of them had the emotional capacity to understand what had happened and I felt it would only be confusing and upsetting to them to try and explain it.  (I found out I was right via my afternoon guilty pleasure, Dr. Phil, where he suggested that children under 6 should not be exposed to the images.)  Alex might have passed the chronological cut off, but he isn't there emotionally.

However, I don't think I should shield them from knowledge of the Holocaust.  It wouldn't be appropriate to bring it up now but at some point, they will have the emotional maturity to grasp it.  I just hope that I can do a good job of explaining that this is what some people did and use it as an example of why we have to stand up for human rights, even if we don't always agree with what other people are doing.

But for now, I'll settle for explaining why it's not okay to push your brother even if he did stand in front of the TV and block your view.

Tuesday 15 January 2013


Today is my 365th post.  One year of daily thoughts and meanderings.

I feel like I should have a cake of some kind.

Monday 14 January 2013

Dollhouse Makeover Update

I've discovered I don't do well at vague plans.  I had promised Nathan that he and I would rebuild my old dollhouse but haven't done much with it since September.

Recognizing that and having listened to a lot of eager little questions about when we would fix the dollhouse, I made a plan.  Every Thursday afternoon.

This week, I tackled the most damaged part.  The tower.

Several walls had popped out and a lot of the trim had been yanked off.  You can see the damage here.

You can see on the left that a wall is missing, leaving just the internal wallpaper.  On the right, the wall broke in half and in the middle, all the trim popped off.  I spent a fair bit of time sorting through the bits of debris I saved from when the accident happened.  I have all eight sections from the octagonal roof, plus the octagonal base, which is good because those would have been a real pain to refabricate.

I spent my time gluing while Nathan played inside the house.  The results ended up looking pretty good.

I still need to reglue all the white trim back on, which will be tricky.  Impatient though I can be, I decided to give the walls a good chance to settle before gluing trim.

My next big decision is whether to reshingle the roof.  The current shingles are black construction paper and have faded very unevenly.  The bits of roof I have saved are much darker than the bits which have been in the sun.  Apparently there is a ton of dollhouse-related industry sites on the internet.  I could see this becoming a very expensive hobby very quickly.

I'm missing two bits of plastic molded siding, so I also have to decide how I'm going to replace them.  Right now I'm somewhat at a loss.  I'll have to match it carefully for texture and colour.  No luck in finding a similar option online thus far.  I may have to send my grandmother an email to ask where she got the material.  Of course, this is several decades later, so I doubt it will still be available but it never hurts to ask.

Sunday 13 January 2013

Equality Now

I found this YouTube clip of Joss Whedon's acceptance speech for Equality Now in 2006 where he talks about why he feels strong female characters are important.

In the end, it's a simple answer: because there aren't enough of them and people are still surprised by them.

But his impassioned statement gets me every time:  "Because equality is not a concept, it's not something we should be striving for.  It's a necessity.  Equality is like gravity.  We need it to stand on this Earth as men and women.  And the misogyny which is in every culture is not a true part of the human condition.  It is life out of balance and that imbalance is sucking something out of the soul of every man and woman who is confronted with it.  We need equality, kinda now."

Only Joss could say something which strikes so deep and so true, and yet still funny.

I believe he's right.  Misogyny and hatred aren't our birthright despite a certain universality.  We're an aggressive species.  We managed to destroy our other hominid relatives (or at least the paleontological record strongly suggests we did).  Our determination to shape the world into what we wanted has been both our greatest asset and our greatest weakness.  But maybe also our greatest hope.  Because we still have that determination.

Saturday 12 January 2013

Can't Get It Out Of My Head

I've been organizing ORWA's annual Valentine's Day Lunch.  It's a fairly big job.  This is the major social event of our year.  But it's also fairly straightforward and well laid out.

But I am stressing over it more than I must have realized.

I have woken up for the last four nights in a row with my mind in a whirl with to-do lists.  Even if I write them down so I know I'll remember in the morning, I'm still having trouble relaxing away from it.

At least it will be over soon.  Another month and I can gladly put it behind me.  Hopefully with memories of success to offset the stress.

Friday 11 January 2013

Hostility and Equality

I've been reading a book called The Psychology of the Girl With The Dragon Tattoo.  First interesting factoid, the original Swedish title translates as Men Who Hate Women.  This puts a very different spin on the story than the English one, which clearly identifies Lisbeth Salander as the heroine.

Unsurprisingly, most of the essays have to do with gender politics and gender identity.  One of them had something very interesting, a short quiz which let you rate your hostility levels towards men and women respectively.

This quiz was published by Glick and Fiske in 1996 to establish the level of beliefs inherent to Hostile Sexism.  To take it, rate each question on a scale of 0-5 with 0 being disagree strongly and 5 being agree strongly.

Hostile to Women:

1) Many women are actually seeking special favours, such as hiring policies that favour them over men, under the guise of asking for "equality."

2) Most women interpret innocent remarks or acts as being sexist.

3) Women are too easily offended.

4) Feminists are seeking for women to have more power than men.

5) Most women fail to appreciate fully all that men do for them.

6) Women seek to gain power by getting control over men.

7) Women exaggerate the problems they have at work.

8) Once a woman gets a man to fully commit to her, she usually tries to put him on a tight leash.

9) When women lose to men in a fair competition, they typically compalin about being discriminated against.

10) Many women get a kick out of teasing men by seeming sexually available and then refusing male advances.

11) Feminists are making unreasonable demands of men.

Hostile to Men:

1) A man who is sexually attracted to a woman typically has no morals about doing whatever it takes to get her in bed.

2) When men act to "help" women, they are often trying to prove they are better than women.

3) Men would be lost in this world if women weren't there to guide them.

4) Men act like babies when they are sick.

5) Men will always fight to have greater control in society than women.

6) Even men who claim to be sensitive to women's rights really want a traditional relationship at home, with the woman performing most of the housekeeping and child care.

7) Men usually try to dominate conversations when talking to women.

8) Most men pay lip service to equality for women but can't handle having a woman as an equal.

9) When it comes down to it, most men are really like children.

10) Most men sexually harass women, even if only in subtle ways, once they are in a position of power over them.

The higher the score, the higher your hosility levels against a particular gender.

I think there's no doubt there's been an increased level in outright hostile relations between the genders.  But it strikes me as a perhaps unavoidable step in the path towards true equality.

You can't be hostile to someone who you truly believe is inferior.  There's no threat to someone who is actually inferior.  Hostility arises along with a fear that the other person is perhaps not inferior.  It's a way of trying to keep an artificial superiority.

In Angel, there was an episode called Billy, where a young man was able to bring out what he called a "primal misogyny" in the men he touched.  They became physically and verbally abusive to women they had previously called partners and equals.  Only it didn't work on the title character, Angel, a 200 year old vampire.

The writers were always a little hand-wavy about why Angel was immune but here's my theory.  Angel isn't threatened because he was raised in a period which genuinely supported a belief that women were the weaker sex and needed to be protected.  Deep down in his subconscious, he's not afraid of women.  Consciously, he is clearly supportive of strong, independent women, as are the rest of Billy's victims.

That story line is what first got me thinking about the link between hostility and equality.  Granted, it's fiction but it makes sense. 

There are still battles to be fought on the equality front, no question.  But I think this culture of hostility and accusation also needs to be addressed on all fronts, whether about gender, orientation, race or Star Trek franchise preference.

Thursday 10 January 2013

Register Disability Savings Plans

We went to a presentation last night on Registered Disability Savings Plans, which is a fairly new alternative the government is offering to help families and individuals with a long term disability.

Basically, the plan recognizes that, however unfair it may be, people with physical and mental challenges tend to both have more expenses than typical and be able to earn less than typical over their lifespan.  The RDSP allows families to save money for their children's retirement and long term needs.

Initially, this was touted as a means of providing care (which implied it could be used at any time for therapy, etc.) but since there are severe penalties for accessing it before the beneficiary turns 59, that's clearly not what it's meant for.

Overall, it's a good idea.  With over a half a century of interest, I'm fairly certain we should see some good returns on our investment.  The government promises that money from an RDSP won't count as "income" when calculating other benefits.  (I'm not counting on that, too many other programs will come and go and change in the next 50-75 years before Alex can collect.)  As an incentive, they offer fairly decent matching grants where they'll match you dollar for dollar up to the first thousand dollars regardless of income.  Low-income families can do even better than that.

There are some limitations which will keep it from being too useful.  There's a lifetime contribution limit of $200 000.  That strikes me as a very small number for having to provide for someone throughout old age.  Even with interest, it means this can't be your only support.  There are also some strange conditions on how they want the money withdrawn and when it can be withdrawn.  For example, if you withdraw it before the beneficiary is 59, you lose the last 10 years of government matching.

It's something parents should think about.  After almost six years of therapy, we know Alex will likely need some support throughout his life.  What level, we don't know.  It may be that he can get by with someone checking on him periodically or he may need more constant supervised care.  Our goal is still to have him live as independently as possible with as minimum a supervision level as possible and I don't intend to give up on that.

But realistically, if I wait until I'm sure, that costs him a lot financially.  I may have a good idea what his long term needs will be when he's 30, but by starting now, he's got 21 years of contributions and interest to draw on.

Wednesday 9 January 2013

More Big Feelings

The more I watch Nathan, the more I'm sure he's like me, easily affected by the world around him.  I've learned how to erect walls around myself that protect me most of the time but it takes a long time to learn how to do it without cutting yourself off completely.

I'm hoping I can help him in his journey.  But there's one thing which I'm very careful on.  I always respect his feelings as genuine.  (Even when I suspect his "upset" is more a manipulation tactic than an emotional wound.)

Nothing hurt me more than when people laughed at me when I was upset about something.  And it was incredibly isolating and hurtful to be told I shouldn't feel the way I did.  It left me wondering if something was wrong with me.

I don't want Nathan to feel that way.  Sometimes people do laugh at him and I can see the hurt in his eyes.  I can't stop that, but I can ensure it doesn't happen at the hands of his parents.

Mr. Rogers introduced the concept of respecting emotion to children's television.  He talked about how important it was to understand what you were feeling and that it was okay to feel sad or mad or frustrated.  It wasn't okay to hurt other people's feelings when you're upset, but the feelings themselves were okay. 

A lot of children's programs today still treat emotions as disposable.  Someone broke your favourite toy?  Well, they didn't mean it so we will now all be happy and sing together.  I'm still sitting there saying to myself: but he should be upset!  That was his favourite toy!  And now it's gone!

When Nathan tells me he's mad at me and doesn't like me, I tell him it's okay.  I've just disappointed or frustrated him, I expect him to be mad.  And at his age, being mad and not liking someone can't be separated.  Sometimes he gets upset when I tell him it's okay.  I get "It's not okay!  It's bad!" from him. 

So I tell him it's not bad.  That it's okay to be upset.  That I understand why he's upset and while I'm sad he's upset, I know it's how he feels right now.  It's a complex message, but I hope it'll come across with enough repetition.

Of course, I'm also working on getting him to be polite to people even when he's upset.  Saying hello or goodbye to someone is just basic manners, even if you're an irritant away from Hulking-out.

I've also indulged in my inherent comic book geekiness.  We've looked at some Hulk comics and talked about how the Hulk has big feelings too.  Feelings so big they make him turn big and green.  This may backfire on me, but for now, I'm pleased with my inspiration.  There aren't many examples of adult men expressing emotion but the Hulk works.

Tuesday 8 January 2013

Watching His Mind Work

People with autism often process verbal exchanges more slowly.  I got to watch this happen with Alex today.


Okay, pay attention.

"...would you like to go in the car..."


"...with Mommy and Daddy and Nathan..."

Hell no.

" get Dairy Queen ice cream?"



Big smile and a yes.

Monday 7 January 2013

Actually Got Some Work Done

December was a bit of a bust for writing.  Sadly, most of what limped out of my brain is not worth saving.  My confidence in my plot and characters sank to a deep low.

Fortunately the ORWA workshop this weekend was an informal brainstorming session and so I was able to talk over my issues with other authors.  Which proved surprisingly helpful.  A plot which had begun to feel like a shallow bad episode of X-men (at least in my more fearful and depressed moments) has regained its clarity and purpose.

I know all writers go through these periods of self-doubt which is why a supportive group is a really good idea.

I managed to get some work done on clarifying what needs to be revised.  I may end up blowing my March 1st self-imposed deadline but I'll have a much better first draft to send out to my test readers.

And I even have an idea for a good title: Revelations. 

Sunday 6 January 2013

Pacing Yourself

The New Year is a time for all sorts of resolutions.  Eat less, exercise more, meditate daily, take an art class, read more ... all sorts of good intentions.  Most of which will fizzle before February.

One of the things I am always tempted to resolve is to do more therapy work with the boys.  I've always had a bit of a type-A obsessive stick-to-it-until-its-done (or I get bored) internal coach. 

I know a lot of parents reading this blog have children who have just been diagnosed.  There's a temptation to sign up your kids for all kinds of intervention, attack the autism with anything and everything at your disposal.  When Alex was first diagnosed, I had plans to dedicate almost every waking moment to therapy work with him.

But as tempting as it is, it's not a good idea.

Intervention is important and you shouldn't hesitate to start some kind of program.  But the important thing is to remember to pace yourself.

Autism intervention is a marathon with progress measured over months, not days.  It's exhausting for both the parents and the child.  Whatever pace is set, it should be one which can be maintained over the long haul.  That doesn't even begin to get into the issue of cost, another area where blitz attacks can drain the reserves you'll need later.

Often in therapy, progress is built on small, increasing steps.  I think that's a good model for parent intervention, too.  Start with an achievable and non-intimidating goal of five minutes a day.  (I recommend setting a timer because you don't want to "punish" your child by making the session longer if its going well.)

Eventually, a lot of the therapy exercises will become second-nature.  I automatically ask Alex to make his requests with a full sentence rather than a single word.  Getting him to look at me or call me by name when he wants something is a little harder to remember, but I'm getting there.  It probably took me about four or five months to start recognizing naturally-occuring opportunities for therapy intervention (like when we were playing on the swings and I started making him say "Go!" before pushing him).

Saturday 5 January 2013

Lorax Quote and a TV Guide Observation

We got The Lorax for Christmas and I was laughing quite a bit with it.  Which I didn't initially expect, since the Dr. Seuss book is a little preachier than I generally like.

But I'm sharing a quote which made me laugh out loud:

The Once-ler hands the Lorax a marshmellow during an extended rant.  The Lorax stops to sniff it and enjoy the squishiness before trying to resume an indignant expression.

Lorax: "I'm going to eat this, but I'm highly offended."

And a slightly less politically correct observation.  Flipping through the TV guide, I saw a show on Discovery called When Aliens Attack.  I pointed it out to Dave and suggested it was a title more likely to be seen on Fox than Discovery.

Of course, on Fox,  it would probably be about illegal immigrants instead of extra-terrestrials.

Friday 4 January 2013

A Full Bucket and Not Much Sleep

My therapist gave me a metaphor which I really liked.  Everyone has a bucket and life fills it with ... dirt (although she used a less-child-friendly term involving post-digestive material).  Since people don't like hauling around dirt, they try to get rid of it.  For some, they can use meditation or other positive thinking techniques to empty their bucket.  Others use the simpler method of dumping their dirt into other people's buckets.  We all know them and we've all been the recipient of flying clods of ... dirt.

I have the particularly unfortunate combination of not being good at getting rid of dirt and of not being good at preventing others from dumping theirs on me.  I have improved in that I no longer believe it is my responsibility to get rid of others' dirt but the rest is still something I struggle with.

I did try for an extended period to try and stop others from dumping on me but that did not go well.  Lots of drama and accusations and even more dirt-flinging.  It reinforced a lesson I learned fairly early on: I can be righteous or I can be effective.  If I want particular effects to happen, then I need to swallow the dirt and concentrate on my goal.  Wallowing in my anger and expressing it to its targets doesn't help me reach my goal.

I'm good at ignoring dirt in the moment and keeping my focus on what needs to happen.  It's been an asset to me as an employee and parent.  But when the immediate crisis or situation is over, then I have to deal with the sickening after-effects of too much dirt.  And it does upset me.  It makes me feel used and like I've been treated as a convenient target. 

I suspect there is some kind of Zen middle ground out there where I could mentally prepare myself so that I can refuse to accept the dirt but in such a way that I don't provoke more dirt-slinging.  Kind of like a shield where the dirt comes flying at me but doesn't touch me.  But I'm not there yet.

I have found that writing out my feelings helps.  It gets the dialogue out of my head and lets me move on.  Mental meditation techniques also help, like imagining the unpleasant thoughts as weeds that I'm plucking out of a garden, or sometimes, using a bulldozer to shove the garbage aside.

But either way, it's still a lot of crap ... I mean, dirt.

Thursday 3 January 2013

Happy Jar for 2013

A friend of mine passed on a great concept for this year: a Happy Jar.

The concept is simple: get a jar and every time something great or interesting or fun happens, write it down on a slip of paper and put it in the jar.  At the end of the year, open up the jar and review the year.  (Or more frequently if you need the boost.)

She gave everyone in our group jars and challenged us to keep it up for a year so that we can all share out best moments at next year's New Year's Eve party.

I think this is a great idea.  I'm not much for gratitude journals or the Life is Awesome project (find something awesome every day for a year) but it's easy to forget some of the great moments in life as the daily grind wears on.

I will be giving this a good go and since I'll probably steal some of the moments to share on this blog, it might be a little repetitive come New Year's but I can live with that.

Wednesday 2 January 2013

The Vaccine Debate, My Opinion

I got into a rather heated debate on this subject over the holidays.  To preface, I do not believe there is a causitive connection between autism and vaccine.  I am willing to believe anecdotal evidence that parents have noticed difficulties with their children after vaccinations and certainly, some children will react better than others depending on the strength of their immune system. 

But I think parents who choose not to vaccinate their kids because of fears of autism are making a potentially dangerous choice, not just for themselves but for the rest of society.  Harsh, but it's what I believe.

As I see it, there are two big challenges to parents trying to make an informed decision about this.  The first is that the majority are not aware of how this potential connection between autism and vaccines came about.  The second is that we have become a society which is distrustful of those in authority.  We've caught corporations and the government in lies too many times to be completely sure of their honesty. 

First things first.  The history.

Andrew Wakefield was the man who first raised concerns about autism, gut issues and vaccinations.  At the time he was a medical doctor who had done a study which he claimed showed that some otherwise healthy children developed autism after being vaccinated and that he had found traces of the measles, mumps and rubella vaccine in their guts.  At the time, this was taken with great seriousness and launched a series of investigations.

The problem?  To begin with, bad methodology.  The study was based on 12 children who were recruited because their parents believed they had developed autism and gut problems after being vaccinated.  There was nothing to show that the children had been developing normally before the vaccination and indeed, it was determined that none of the children actually had inflammatory bowel disease.  Next problem, actual fraud.  He faked the lab results that showed the vaccine in the gut.  He faked the medical reports on their gut problems.

Wakefield claims he has been the victim of a conspiracy but has been criminally charged in Britain and had his medical licence stripped.  To me, the final nail in the coffin of his credibility is that the study was funded by a group which wanted him to make a new measles, mumps and rubella vaccine and asked him to find a way to discredit the current formula.

Some parents and anti-vaccination advocates still believe in Wakefield's results.  They have gone through several permutations of blaming various aspects of vaccinations.

Once the actual vaccine had been cleared by several independent studies, the attention shifted to the mercury-based preservative thimerosol.  Mercury sounds bad and it was easy to get the public stirred up about it.  California passed a state law banning thimerosol in all vaccines in 2006.  Since then, their autism rates have remained consistent with the rest of the country even though the children currently being diagnosed have never been injected with thimerosol.  To me, this is conclusive proof that the thimerosol was also not causing autism.  Again, I'm willing to believe that some children may react worse than others but it isn't causing the underlying problem.

The current focus is the number of vaccines, multiple vaccines given in a single injection and the age at which the vaccines are given.  Studies are being run to examine these factors.  But part of the problem is that because parents aren't vaccinating their children due to these fears, society as a whole has lost herd protection.  Thus there has been pressure to immunize kids sooner to keep them from dying after being exposed to previously prevented diseases.  For many decades, the number of deaths from measles in the US was 0.   Now that number has been increasing steadily.  It's not huge, but we're still dealing with children who have died from something which can be prevented.

I have two major concerns with this focus on vaccines.  One, the number of resources which have to go continuously into disproving the theories.  Valid concerns should be followed up, but I don't think this particular bugbear is ever going to be satisfied.  There will always be another factor they want investigated because they've already decided on the conclusion.  Second, I'm terrified that partial immunization of society will lead to vaccine-resistant versions of the diseases in question the same way overuse and under-follow-through of antibiotics led to antibiotic-resistant bacteria.

As I see it, the problem is less about the actual issue than about distrust.  Parents and anti-vaccination advocates cling to vaccines as the cause of autism.  They've already decided that and they're searching for the why of it.  The authorities have lost their credibility (deservedly so in a number of cases) but that leaves the situation vulnerable to those looking to take advantage of fear and desperation.  When an authority vacuum forms, people are vulnerable to con artists and passionate theorists of all stripes.

I'm all for proper studies and investigation of claims.  But there has to be a collective open mind about the results.  Fishing for predetermined results is bad science, no matter what the results are.  If someone has already decided that vaccines are to blame and will not accept any other conclusion, there's no possibility of honest debate and clarity.

Looking at the evidence as we understand it today, I don't believe vaccines cause autism.  I believe there is substantial evidence that not vaccinating causes even worse results.  As more evidence comes in, I will examine it and adapt my opinion accordingly.

I don't claim to be a conclusive expert on any of this material but I've tried to be fair in examining the opposing claims.  I understand the fear and desperation, the determination to assign blame and gain compensation.  It's terrifying to not know if something is hurting your children.  It's tempting to latch on to any explanation that seems plausible.  We crave certainty over the unknown.  But it's only by accepting the possibilty of the unknown that we can discover the truth.  If you don't know to look for it, it can never be found.

Tuesday 1 January 2013