Costumes and Pumpkins

The boys had a great Hallowe'en.  The expected downpour held off (I suspect it was pushed back by the collective wills of every parent and child in the city).  I had myself organized for once and didn't have to spent the afternoon and evening rushing around doing last minute details (and getting progressively more upset and irritable).

We had an Avengers' theme this year.  Nathan was Iron Man and Alex was Thor. 

For Nathan, I made the red jumpsuit and then attached the chestplate and epaulettes from an Iron Man costume I bought back in the summer (when the movie was out).  The mask also came from the store-bought costume.  I also got little hand repulsors that lit up and made noise and a press-and-stick LED lamp to put on the front as the arc reactor.

 

 

For Alex, I sewed the cape and made his breastplate out of silver and gold gilt bristolboard (then covered it with Saran Wrap to protect it from the rain).  I bought the helmet but could not find a Thor hammer anywhere (and with the movie coming out on Thursday this week!).  So I made the hammer by wrapping a tissue box with tinfoil and attaching it to a stick.

 

As for pumpkins, this year Nathan requested an Angry Birds pumpkin.  So I carved a little pie pumpkin into the Angry Bird and made two little green peppers into the pig people.

 

 

 

It looked pretty neat at night with the candles:

 





Then I wanted to do something untraditional for the other pumpkin.  So I carved it into a little house.

My little goblin did not make it to the final show.  But I still think it looked pretty cool.  Even if it wouldn't stay lit for more than two seconds in the wind.

You may be wondering about the witch-demon masked pumpkin beside it.  Nathan won that one at school as part of a draw.  He was very proud of it but the pumpkin wasn't hollowed out and it weighed a ton to carry home!  Especially one handed as I tried to juggle the umbrella and the pumpkin.  But we got it back.

I decided to go with a bats and ghosts theme for the window and pumpkins for the door.  I think it ended up looking pretty good:

I think we all ended up having a good time.  Alex even rang a few doorbells and Nathan visited most of block for trick-or-treating.

A Geeky Halloween Laugh

I'll be posting pictures of the boys' costumes and my fabulous jack-o'-lanterns later tonight but for now: enjoy a good laugh courtesy of Texts from Superheroes:

Baby It's COLD outside

Yesterday, as I prepared to send the boys off to school, I saw the temperature: -7.

In our family, cold dips like this present a real challenge.  My boys do not do well with repeated changes in routine.  Switching from their fall jackets to their winter ones counts as a change in routine.

I had to decide: do I put them in their winter jackets, which they will probably tolerate, but risk having to switch them back to their fall ones if it warms up, which would probably require a tantrum or two?  Or do I leave them in their fall jackets which are not warm enough for the weather.

In the end, I left Alex in his fall jacket and put Nathan in his winter jacket.  Nathan is more likely to tolerate a series of back and forth switches (although I may be jinxing myself by saying so).  Also, his fall jacket is a lot thinner than Alex's.

I gave Nathan a choice, which I'm hoping will also edge matters away from the tantrum direction.  He could either wear his fall jacket with a sweater underneath or he could wear his winter jacket.  He picked his winter jacket.

This is one of those situations which typical families don't have to deal with.  If it's cold, wear the winter jacket.  Not so cold, fall jacket.  No problem.  It's a seemingly simple problem and yet we have to come up with creative solutions.

Speaking of creative solutions, we discovered Alex was in fact ditching his hat and mitts in the van during the morning, leaving him cold all day.  Now we're sending them in his bag and he's got a separate pair to wear while he plays outside in the morning.  I've told the school to just keep them but they keep sending them home.  At least he's got them.

Talk, Talk, Talk ... Why Communication Isn't Just For Oprah

Last week, we had a communication failure.  Due to my complete inability to clone myself, I have to have someone at the house to pick up Alex at the same time I'm at Nathan's school picking him up.  On Friday, my pickup person had switched with someone else and didn't tell me.

On the surface, this may not seem like an actual problem.  As long as someone is there, then everything should be good, right?  There are two problems with that particular theory.

First, Alex has a hard time with unexpected changes.  Since we have four pickup people, I put a picture of the person on his schedule.  Then he knows who to expect and generally does better.  We're less likely to have a problem getting him out of the van or of him refusing to go inside because he's upset over having his expectations dashed.

Second, it means I'm focused on the wrong person and if something goes wrong, I don't know who to contact.  This is what happened last week.  As the time crept by, my pickup person didn't show.  I tried calling and couldn't reach them.  So I ended up having to call Alex's transport and ask them to wait for me while I picked up Nathan. 

The van driver was fine with waiting and they didn't have to wait for very long, but it was a disruption in routine.  One which could potentially affect three other children with autism.  I have no idea what their tolerance for routine change is and thus I worry that this might have set up some bad evenings for other families.

I've had several people dismiss my requests to be kept informed as an artifact of my inner control freak nature.  They may have a point, but so do I.  It is not unreasonable to ask to be kept informed of minor changes when those changes could potentially have a huge outcome.

What Makes A Mom

I was out with my two best girlfriends this weekend and the topic turned to motherhood.  We talked about our fears of inadequacy before becoming mothers (and also our fears of continuing inadequacy after becoming mothers).

We put a lot of pressure on ourselves to be the "perfect" mom.  There are a lot of experts who are only too happy to tell a mom why her slightest mistake will turn her child into a potential serial killer or raging alcoholic or a guilt-sucking endless void of neediness.  Sometimes a combination of all three.

Evolutionary psychologists talk about the paleolithic shaping era, when they believe we learned to be human.  This is where women learned to want powerful, strong men and the initial sex divisions of hunting and gathering started.  Also, when we were being eaten by a lot of Nature's other contenders for Top of The World.

Our parenting hardwiring must also have been shaped at this time.  So our internal parenting strategies are all based on the premise that if at least half of our offspring survive long enough to start mouthing off to us, we've won the genetic lottery.

That is an awesomely low bar to clear. 

Clean water, adequate food and wildlife-free shelters pretty much guarantee we are better parents than we're designed to be.  We've already won.

My glee at this may seem strange but frankly, I think mothers could use something of a break.  We are doing way better than we think we are.  We're not inadequate.  If you love your child and haven't given in to the temptation to flee for the Mexican border ... that is worthy of some celebration.

I'm going to make an effort to summon up my inner cavewoman more often and just be thrilled that nothing is actively trying to eat me or my family.

It's a little victory.  But it's something.

More Questions About Pictures

This is one of those stories you couldn't make up if you tried.

About a week ago, I discovered we hadn't received Nathan's school photos.  I frantically called around and managed to order them online.  Then I began asking Nathan what had happened.

His response that he threw them away because everyone said he looked stupid and like a baby really had me worried.  I was afraid he might be being bullied.  I thought it explained the difficult week we'd had two weeks previous.

Now the mystery has only deepened.  In tidying up for my cleaners tomorrow, I discovered Nathan's photo proofs.  They were buried in a pile of papers.

I don't remember seeing them.  Nathan usually empties his backpack under my supervision.  It gives me plenty of opportunities to rescue important notices from amid the various crafts and pleas for money.

Did Nathan deliberately hide them?  (Unlikely.)  Was I distracted on the crucial day and failed to rescue them?  (More possible.) 

I'm not sure how to feel about his story about throwing them away.  On the one hand, I had my doubts right from the beginning.  I didn't want to disbelieve him but the facts I had didn't make sense.  I thought he might have misinterpreted and I knew he had a penchant for making up stories which he thinks his audience wants to hear.

I really don't know what to think here.  I don't think I made a horrible mistake.  I did notify the school (with my caveats) and I will let them know about the found proofs.  I'm bothered that he made up a story but it seems developmentally appropriate for his age (which is why small children make horrible witnesses at trial).  Did I press too hard for answers?

I think I'll just have to chalk this one up to the learning board and keep going.

Easy Come, Easy Go

Kids lose stuff.  It's one of those universal truths like "fire is hot" and "dinosaurs eat you."

Back in the cave days, cave-moms probably yelled at their kids for losing rocks: "What do you mean you left it somewhere?  That was a really good rock!  We've had that rock since your grandmother's day."

However, Alex has lost 3 hats and four pairs of gloves in the last 3 weeks.  I'm not sure if they're being ditched in the van or at school but they are sure as heck not coming home.

We need a better system in place.  Part of the problem is that I'm not here to pick him up at the end of the day.  (I'm busy getting Nathan from school.)  So the person picking him up was not here in the morning to see what bits he left with and thus doesn't know what to look for. 

We're going to try doing up a daily checklist of what he was wearing and brought.  Hopefully we'll be able to start improving our return policy.

My big concern is that he might be ditching stuff in the van on the way to school.  Which would mean he goes all day with no hat or gloves.  It's starting to be quite cold in the mornings.  His driver doesn't seem to be particularly aware and although I've asked him several times to check Alex (or at least the van!) before driving away, it's just not happening.

This is going to take some creative thinking to come up with a solution with the resources we have.  Last year, his driver was great.  She had a little checklist for each kid (back pack, lunch bag, hat, gloves) and made sure each kid got out of the van with the same stuff they got into the van with.  This year, we don't have that luxury.

Possible Enlightenment

A few weeks ago, Nathan's teacher had let me know he was having a particularly difficult week at school.  I had also noticed signs of stress at home but was at a loss to figure out why.  After a long weekend at home, he was doing much better and I resigned myself to possibly never knowing why.

However, now there is a possible hypothesis.  Looking back, that week was also when the school pictures came home (the ones Nathan threw in the garbage).  Neither behaviour is like Nathan, so it wasn't a shock to think maybe they were linked.

I spoke with Nathan to ask him why he threw away the pictures.  He told me he didn't like them.  I asked why and after a bit, he told me they were "stupid" and made him "look like a baby" which surprised me.  I asked him why he thought that and he said everyone told him that.  I pushed and he kept insisting that everyone in his class had said it to him.

Naturally, I don't believe that every child in his class took the time to insult him.  But it is common for children with autism to assume that a single opinion is the group's opinion.  Since they have trouble with social cues, they can read the silence as support.  It is also not uncommon for them to project their own feelings onto other people.

I don't know if anyone actually said anything to him or not but I've let the teacher know.  It would be fairly difficult for a bully to fly under the radar when he has an aide helping him, but the aide does also work with at least one other child in the class.

I'm also going to start explaining to him that sometimes people say things which aren't true because they want to be mean or funny.  This may seem obvious, but it's one of those social realities which people with autism don't pick up.  Since they've been told to always tell the truth, they will assume others will always tell the truth.

It's hard to figure out the "rules" which I take for granted, being more neurotypical.  Temple Grandin and Sean Barron have a book: The Unwritten Social Rules.  It's guidebook for people with autism and I found it really helpful in getting me to think about things I otherwise would assume were obvious.

Travel Tips

It's getting to the time when people are starting to think about holiday travel.  This can be an especial challenge with kids with autism but there is one unexpected benefit when it comes to air travel.

Free airline tickets.

Yep, that's what I typed.  Free airline tickets.

Air Canada has a policy when it comes to passengers with special needs.  (This is often used with frail or elderly passengers but applies to children with autism as well.)  If the person requires or would benefit from having a dedicated care person on the flight to see to their needs, Air Canada will give that care person a free ticket (provided the flight is within Canada).  All the individual has to pay are the airport taxes.

Here's the useful part: the care person can be a parent.

So if you are travelling within Canada, you can get one of your tickets for free.  This makes travel a heck of a lot easier and cheaper.  For travel to the States, the discount rate varies, so it's a good idea to check with Air Canada first.

There is a form which you have to get your doctor to fill out.  It's buried in their website and not easy to find but the link will take you right there.  Here's a link to the page explaining the policy.

The family has to book the tickets before submitting the application.  You book the ticket for your child but don't buy one for yourself.  Then you submit the form to their review board and they approve the attendant ticket.  When I've done it, we've usually heard back within a few days.

I usually get my doctor to fill out the form before I book the tickets.  That way I can submit them right away as soon as I book the flight.  I just leave the booking number and flight details blank.

There aren't many financial breaks for families with autism.  This is a good one.

Tantrums and Tears

This morning was a real challenge.

Alex has to drink a small amount of laxative daily in the morning to keep everything flowing smoothly.  He doesn't like it and is prone to try and hold the cup to his mouth to pretend to drink or try and chew on the plastic cup or simply ignore it.  We've coped by setting up a system: he gets a little time to drink it on his own, then I count down from 10 and if he's not done by the time I finish, there's no iPad to watch with breakfast.  It is an incredibly frustrating ritual to start the morning with.

Today he decided to test us and refused to drink.  He lost the iPad and his many tears and much whining and complaining did not bring it back.

Eating his oatmeal is almost always a challenge, which is why we pair it with getting to watch the iPad.  Only today, there was no iPad.  So there was even more whining and complaining and refusing to eat unless prompted.  Bill Cosby was right, there are only so many times you can repeat the same command over and over without starting to sound like something out of the Exorcist.

The battle of wills continued over brushing teeth and hair.  Despite having followed the same routine for over two years, Alex decided to treat today as if it were all brand-new and unfamiliar.  I realize it is part of a struggle for control.  Having been dominated over breakfast, he tried to regain control through non-compliance for the following activities.  It's a fairly common reaction among children but still frustrating.  He was given warnings but eventually lost his post-breakfast computer time over lack of cooperation.

My main worry was that the problems would spill over into school, causing a bad day.  But I as a parent can't be held hostage by the fact that it is a school day.  Most of the time, our system works.  But in order for it to work, the boys both have to know that if we state a consequence, we will follow through.  So no big grandiose threats like throwing away all the toys and no backing down once a consequence has been stated.

Then to add extra lemon juice to an already stinging wound of a morning, I open Nathan's agenda to see that the money for school pictures is due today.  Only we never got any school pictures for Nathan.

A little questioning determines that he didn't want to bring them home so he threw them away in the garbage.

This not wanting to bring things home from school is a real problem.  I don't know where the fear comes from (the one episode of My Big Big Friend where one of the kids gets a note and the other kids speculate he's in trouble?) but we need to figure it out.

Needless to say, I was already exhausted by 9 am.  Having to fight the same struggles over and over again is exhausting and demoralizing.  But I have to tell myself that today is unusual and that someday it will be better.

I have to believe that in order to get through and deal with the other pre-scheduled crises for the day.

More Disney Updates

Disney has their interim policies up on their website about the new Disability Pass program.  (The program was being shut down due to widespread abuse.  Wealthy families were hiring disabled people to help them skip the lines.)

From what I've seen, it's promising.  One of my big concerns was about having to go to Guest Services every time they wanted to do a new ride.  But they say people will be able to get updated ride times at kiosks throughout the park, rather than having to go to the main park entrance every time.

They are creating a separate program for those who need wheelchairs or scooters, which should cut down on the abuse.

I was pleased to see links to a page on suggestions for guests with cognitive disabilities (including autism) and a Guide for Guests with Cognitive Disabilities including ASD which is a 19 page document with suggestions and tips.

They also encourage families to talk with Guest Services in advance about what they need.  I get the feeling they will still be accommodating, they just don't want to be taken advantage of.

It makes me feel better about planning our trip for next year.

Our Staycation

 

Dave and I got to enjoy a lovely weekend out ourselves thanks to the Quickstart Respite Program and my parents, who took the boys to their house for the weekend.

We stayed at the lovely Southway Inn on Bank Street.  The room was very comfortable and the food was good.

We brought some books and spent a lot of time reading with our iPods.  We went out to a movie.  We watched the inevitable Storage Wars marathon on A&E.  We got two nights of uninterrupted sleep.

It may sound rather pedestrian to some, but it was exactly what we needed.

I like how Dr. Phil puts it.  Parents often drain themselves dry to care for their kids under the best of circumstances.  Special needs parents tend to go well past the E on their internal fuel gauge.  But the best gift a parent can give their child is the best version of themselves.

It's easy to get tired and overwhelmed.  It's easy to look at the never-ending mountain of work to be done and insist on having to tackle it, telling ourselves that we'll do something fun later.

There are even logistical reasons to avoid taking care of ourselves.  Our kids often require specialized and experienced care.  Finding it isn't easy or cheap, which tends to discourage us from going out.

There are a hundred and one reasons not to do it.  But the one reason to do it outweighs them all: I can't give what I don't have. 

I need to have the energy reserves in place so that I don't break out crying at the fifth toileting accident in a day or end up yelling because the <insert profanity> Legos are all over the floor.  Again.

I gave myself the gift of slow time, of not feeling pressure to do anything.  We could have gotten dressed up and gone to dinner ... but we'd rather sit in the room and eat Harveys and watch a Castle rerun.  I could have gone swimming in the hotel pool ... but I'd rather read a romance novel.  I could have gone shopping for accessories for the boys' Hallowe'en costumes ... but instead, I learned valuable lessons about the business of buying abandoned storage lockers for fun and profit.  (Thank you, Storage Wars)

Opportunities can sometimes just mean more pressure and less time to relax. 

No Toileting Hat Trick

And on the third day ... there was an accident.

<sigh>

I'm a little disappointed, despite having tried to prepare myself in advance.  But I still think I handled it well.  Just matter of fact in having to clean it up.  Nathan asked if he still got to get rid of all the rules and I had to tell him no.  He didn't seem too upset about it.

If you're teaching something to a child with autism, this is something you have to be prepared for.  It's not a straightforward accumulation of skills.  It's more like watching the tide come in.  The waves push up on shore and then retreat.  The forward movement is almost imperceptible behind the constant back and forthing.

I try to use little journal notes to remind me of long term progress.  Every six months, I jot down a little point-form sketch of where the boys are and what they're doing.  It's very simple:

Alex
- aggression (5-7 hits per day)
- toileting (3 accidents per day)
- food (1 mouthful of rice, spitting back out)

Then I can go back and see the invisible progress.  The next entry might read:

Alex
- aggression (3-5 hits per day)
- toileting (3 accidents per day)
- food (2 mouthfuls of rice)

It makes a big difference in my energy levels.  When I feel I'm trapped in an endless cycle with no chance of improvement, it's easy to let things go.  After all, if nothing is ever going to get better, why bother trying to fix it?  But it is getting better.  A glacial pace, perhaps, but still moving in a good direction.

2 Days In A Row Success

When we first began our toileting campaign with Nathan, we knew restricting screen time was going to be a tough sell for him.  (Which is why we picked it as a reward.)  So I gave him a long term goal: if he could do a BM in the toilet for 3 days in a row with no accidents, all the restrictions would be lifted.

Today we got our second day in a row. 

We praised him to the skies and reminded him about the goal.  He's very excited at being so close.

He's definitely taken another step forward.  We're getting less "just sit on the toilet to watch iPad" tries and more result-producing tries.  He's learning to listen to his body and recognize when he has to go.  And he's made the connection that it's a lot easier to go in the toilet than to have to get cleaned up afterwards.

I don't want to jinx anything and I'm tempering my own excitement by reminding myself that there's no rush and no pressure.  It's more important for him to learn this properly and thoroughly than to have an early success.

We've gone through a lot of stages to get to this point and I'll list them off for anyone who is undergoing their own toileting adventure and would like hints:

- start with simple reward for any BM (marshmallow or cookie).  The idea is to link the act with a positive result, encouraging the child to pay attention to it.

- reward for early notice. Now, in order to get his cookie, he had to tell us right away that he had done a BM.  This helped him to start paying attention to his body's signals.

- once he'd done a BM, he had to sit on the toilet and get a reward. (screen time and a cookie)  This was part of the transition to using the toilet.  Usually we had him sit for five minutes and then he got 20 minutes of screentime after.

- allowing him to get screentime for any "try" on the toilet.  Again, sit for 5 minutes and earn 20 minutes after.  He still got the rewards for early notice but this helped to make the bathroom more pleasant.

- unlimited screen time for a BM in the toilet.  He still got a limited time for early notice or a "try" but now the big prize was clear.

Wedding Bells In The Air

We got some great news over the weekend.  My little sister got engaged.  :)

She and her boyfriend were supposed to come up for the Thanksgiving weekend but finances and schedules didn't permit.  So when he gave her a note inviting her to a special dinner and walk, she assumed he was just trying to cheer her up.  They had a lovely romantic dinner and then took a walk in their favourite park, where he proposed.

The rough plan for the wedding is for late summer, early fall, which is generally a good time for weddings.  It might be in Toronto, where they live, or it might be in Edmonton, where his family lives.

I'm very happy for her but my practical side immediately noticed that this puts our Disney plans in jeopardy.  We had planned to take Alex next fall and have been saving up to make it happen.  A trip for the family out to Edmonton, including flights and hotels (and wedding clothes), will likely wipe out those savings.  I'm keeping my fingers crossed for a Toronto wedding instead.

Dating With Autism

The Globe and Mail had an interesting article about the challenges of dating when someone is on the autism spectrum.

After all, dating relies a lot on snap-judgments based on non-verbal cues, social expectations and casual verbal flow.  None of which are easy for people with autism.

It's one of the things I worry about for my boys.  When they find a person who makes their heart sing, will they be able to express themselves appropriately and effectively?  After all, there are many people with autism who would like to have a romantic attachment but find the actual dating selection process unfathomable.  Not to mention negotiating through the tricky terrain of day-to-day relationship management.

There are some places which try to help adults with autism learn relationship language.  They approach it like any other language or culture.  Although aware they may speak the language of love with a strange accent, they're speaking it nonetheless.

Hopefully more resources like this will be available when the boys start to become interested in romance.

Because having to have your romantic relationship explained by your mom is one of those unwritten social no-nos.

What I'm Thankful For

Once a year, I like to put together a comprehensive list of what I'm thankful for.  Like everyone else, I can spend a lot of time complaining, so it's a good perspective switch-up.

I am thankful:

That I live in a time and era where my options are wide open instead of being restricted by my gender.

That my boys are physically healthy and charming individuals.

That I had the opportunity to raise awareness about the challenges for families with autism.

For my iPod.  Getting to listen to music everywhere without carting around dozens of CDs rocks.

For my PVR.  I love not having to watch commercials.

For books and my local library.  I borrow 5-6 books a week to read.  If I had to buy them, I'd be broke.  This way, I get to learn and read new stories all the time, making me happier.

That my mind still enjoys learning new things.

For my time writing.  I love telling stories and hope that by next year, I can say I'm grateful to be published.

That my extended family has been gracious enough to offer financial support.  I'm sure they all had plenty of other ways they could have enjoyed spending their money, but they chose to help us.  Thank you.

For my amazing and awesome friends.  20 years together and still clicking.

For the opportunity to say what I think without fear of censorship or reprisal.  And for the opportunities to engage in debate without personal attack.

For abundant food and clean water.  There are lots of places in the world where they are still luxuries rather than rights.

For my loyal readers.  Thank you for listening.

Autistic Family Being Evicted

An Ottawa family is being threatened with eviction because their son with autism makes too much noise.

The family lives in a condo and the neighbours are complaining about the noise when Logan is jumping on his trampoline.  They were given 7 days to stop the noise or face eviction proceedings.

It's illegal to evict someone because of a disability under the Human Rights' Code.  (I wonder how many tenants are aware of this particular statute?)  However the family is rightfully concerned that the building may become hostile to them even if the landlord backs down.

It makes me glad we own our home and the only one who can put us out of it would be the bank.  Our children are many wonderful things but quiet is not one of them.

Knowing as I do that many families end up giving up their homes to fund therapy, I imagine that many of them end up renting or buying comparatively cheaper condos or townhouses.  How many of them then end up dealing with this exact situation?  When the walls and floors are thin, even a typical child can be a disruptive neighbour.  Add in extended tantrums, stimming, banging, jumping and I can understand the frustration.

However, I do not agree with the eviction proceedings.  I would hope that an explanation would soften the neighbour's anger and bring compassion.  And if it doesn't, then the neighbours should move.  Not the family.

Signs of Stress

Nathan has had a rough week at school.  His teacher has seen lots of tantrum and resistance (he'll scream and retreat when asked to do something).  He doesn't want to go to the autism room for his breaks.  Luckily, no upswing in aggression.  That particular challenge seems to have gone down.

At home, we've had an increase in tears and tantrums and some major setbacks in toileting.

To me, all of this points to one clear conclusion: he's under stress.  His teacher and I have been in regular communication about this.  She's worried about him, too.

Unfortunately, I have no idea what the stress trigger would be.  There are simply too many options to figure out and no convenient upsetting event to point to:

He could be being bullied or ostracized (nothing too overt or I think the school would have picked it up.)

He could be having trouble settling into the new expectations of grade one. (His peers are maturing and aren't as accepting of things.  Same with school expectations.)

He could be upset about the anti-aggression measures.  (He does get very hard on himself if he thinks he's made a mistake.)

Something could be physically bothering him.  (An infection, an upset stomach)

He could need more breaks and respite than he's getting.

I know most 6 year olds probably don't have the insight to tell their parents if something is bothering them.  But I'm betting there would be a higher chance of being able to tease it out of them with some careful listening and questioning.

I, on the other hand, need to have someone like Sherlock Holmes, able to form reliable conclusions based on observation.  Tiny little details which come together into an accurate picture.

I'm hoping that the long weekend at home will give us some better insight into what's going on.  He woke up very happy and excited today.  Lots of bouncing around and talking.  It was also the first time in a week that he hadn't wet the bed overnight.  At first blush, this makes me think something is happening at school but it's too early to draw an actual conclusion.

What I Would Do For Autism Families

I'm hoping that the Global National story will spark some outrage throughout Canada and particularly in Ontario.  I think most people believe that autism is like any other medical issue when it come to our health care system.  They think that diagnosis and treatment is covered within a reasonable time.

Unfortunately, that just isn't the case.  One of the doctors put it quite eloquently: denying a child with autism treatment is like denying insulin to a child with diabetes.

Canada is better than this.  Personal income should not determine whether or not a child gets treated.

So here's my plan for the Ontario government:

Pay for private diagnosis until the waitlist is cleared.  (Right now, parents are waiting over a year to get diagnosed via the public system.  Once the waitlist is clear, the government can get an idea of how many doctors/psychologists they will need to maintain timely diagnosis.)

Pay for parent coaching at a minimum.  (Teach parents what to do with their autistic children and more than half the battle is won.)

Ideally, pay for a full time intervention program.  Again, pay for private programs until the waitlist for services is cleared.  (In some families, both parents need to work in order to make ends meet.  They won't have the time and energy to work with their children themselves.)

Allow income splitting for families where one parent stays home to care for an autistic child.  (Taxing an 80 000 per year family as two incomes of 40 000 makes a heck of a difference.)

Factor in medical costs and family size when setting up an income cap.  (Most respite and help programs have income caps of 70 - 80 000.  If you make more than that, you can't apply.  However, if a family has to spend 40 000 a year on therapy, that drops their actual income below the poverty line and they could use all the help they could get.)

It's not a complicated plan.  Most of it could be put into place very quickly.

Now let's hope someone listens.

Over 200 Visitors!

Yesterday, my family was featured on Global National as an example of the effectiveness of early intervention.

And yesterday, there were over 200 visitors to my site.  :)

This is the first time I've broken the triple digit barrier and I'm excited.

Typical Children vs Children With Autism

I was in a meeting today at work, talking with an occupational therapist, a behavioural therapist and a psychologist and they said something which I think all parents of a child with autism should hear.

They said that typical children constantly seek out their parents' attention.

Children with autism do not.

I know that when Alex was diagnosed, I berated myself for not having played with him more, not having read to him more, not having forced myself into his world.  He was happy playing on his own and so I let him be on his own.  I felt proud of having an independent child.

And I blamed myself for not having done more.

But this is the key part: most parents don't have to seek out their children to interact with them.  I shouldn't have been expecting myself to have done something no other parent would expect to have to do.

This one little statement goes a long way toward alleviating my guilt.  No matter how often I told myself that it wasn't my fault, I guess a little part of myself still felt guilty.

It makes it even more critical to get an early diagnosis since it means parents will learn what to do faster and be able to help their kids.

ORWA Meeting with Bestseller Deborah Cooke

On Sunday, the Ottawa Romance Writers' Association had a wonderful workshop from best-selling author Deborah Cooke (who also writes as Claire Delacroix).  She went over the publishing side of the industry, explaining the business part of writing.

There was a lot to think about from her presentation.  She went through the royalty rates from the various publishing options.  Assuming a debut book sells 15 000 copies (which is not atypical), then the author's royalties from a traditional publisher will probably be around $5000 (assuming a $ 6.99 cover price) but could be $ 10 5000 if she self-publishes and sells it at $ 0.99 online.

Now the down side is while there is only minimal support from a traditional publisher, there is absolutely no support when self-publishing.  Marketing, cover, promotion ... it's all on the author.  And there's less of a chance of going into a Chapters and seeing your books on the shelf.

She certainly gave me a lot to think about.  She was full of great advice about branding, cover marketing and contract points.

One of her best pieces of advice was to define success for yourself with these three questions:

1) What are your goals as a writer?

2) What is your definition of success?

3) What is the tangible measure of your success?

And here are my answers:

1) My goals:
To write well-written, interesting stories. 
To have well-put-together consistent series. 
To be able to earn my living writing.

2) My definition of success would be if I had a good proportion of positive reviews from readers and a regular income.

3) I would know I was successful if I earned more than $ 4000 a month from writing and if 60% + of my readers liked my work and came back for more.

Nathan Quote of the Week

We were out walking and Nathan was getting quite far ahead.  I called to tell him to slow down and wait.

He asked me why he couldn't run ahead.

Me: Because I'm not as fast as you.

Nathan: Is that because you're old and slow?

Dealing With Aggressiveness At School

I received a note from Nathan's teacher that he's been hitting other students at recess and throwing sand at them.  This is completely unacceptable behavior but it leaves me with a quandary.

He's not generally aggressive at home.  We have incidents but they're infrequent, making it hard to build up a pattern of success in changing his behavior.

So how can I help teach him it's not okay to be aggressive at school when I don't see the behavior at home?  The usual tool is a social story, which I will certainly do.  But, to be entirely honest, I've never seen a social story have an impact on my children's behavior.  It's modeling, redirection and practice.  Those are our effective tools.

Maybe I just need to come up with some roleplaying examples, like a child taking a toy or someone yelling.  And then practice more socially acceptable techniques for dealing with it.  But if I've missed on guessing the trigger, this won't be very helpful.

I wish I had a good answer.  Maybe I can get the school to collect data to help me. 

Either way, I have to figure out a way to teach him or else he's going to find himself labeled as a troublemaker.

New Book Day!

This post will only cement my nerdlike leanings because today I am excited about my latest delivery from Chapters.

I love books.  I love new books full of new stories which I haven't read before.  Full of surprises and potential.  Books are my absolute drug of choice and one I don't ever intend to go into rehab for.

To get around Chapters's minimum order amount for free shipping, we have a list of books we're interested in beside the computer.  When the list gets long enough, I put in an order.  (It's easier now that the limit is $ 25 as opposed to the $ 75 it used to be.) 

I haven't put in an order all summer so this order ended up being more mammoth-like than usual.  It was big enough that the Canada Post guy delivered it to my door. 

At least a dozen new stories waiting to be devoured.  I can't wait!

Emotional Age

We spent part of the last weekend at the park, enjoying watching the boys play on the equipment.  Eventually Alex got bored and wanted to zoom around the concrete path on his scooter.

As we sat watching him, it occurred to me that we couldn't have done this two years ago.  Alex would have taken off and ignored any shout to stop and return.  But now he actually listens.

Two years ago, his emotional age was closer to a two or three year old.  No matter how much trouble they know they're going to get, temptation is just too much.  That's why we don't expect toddlers to avoid sticking their fingers in sockets or grabbing sharp objects.  The goal of parenting is prevention rather than education.  (And trust me, prevention is much harder when your "two" year old is over four feet tall and has the hand-eye coordination of a Cirque acrobat.)

But now Alex is closer to being a four or five year old emotionally.  Old enough to start actually learning lessons and enjoying very limited autonomy.  I used to get a lot of suggestions that I was being too controlling with Alex, that any child his age would want to make his own decisions.  This is true and Alex certainly would have liked to go his own way.  But he wasn't emotionally ready to have that kind of freedom.  It would have been like giving a toddler control over his food and then complaining that he only eats ice cream.

As long as Alex continues to progress, there's hope that we may eventually reach a point of independence.  He may not reach it before his thirties, but that's still better than being completely dependent on your parents until the day they die.

There's still a long road to go and I tell myself not to dwell on it too much.  In the words of the immortal Yoda,I must be mindful of the future but not at the expense of the present.

I'm still hanging onto this little gleam of hope though.  Guess I'm not as incurable a cynic as I thought.