Friday 30 May 2014

Saying Goodbye to One of Our Professional Family

I found out yesterday that our speech therapist is retiring.  She's worked with us for over 8 years now with Alex and 6 years with Nathan.  She's been fabulous, especially with Alex.  In the beginning, he was very non-responsive while working with her.  She did everything short of standing on her head to get his attention.  When we began, he was completely non-verbal and after two years, he began to speak.  Now, he's functionally verbal for asking for things he wants.

Her office is like a second home to us.  Nathan actually took his first steps in her office.  She was the first one to tell us that Alex might have autism and that it wouldn't be a horrible, end-of-the-world thing if he did.

I'm going to miss her and so will the boys.  But I can't blame her for wanting to spend some time with her husband and for wanting to travel and see the world.  I'm glad she's taking the time for herself.

Thursday 29 May 2014

A Letter To "Daddy" in Seat 16C

A mother of an autistic child wrote this letter to the man who sat next to her on a plane trip.

Travelling, or even just being out in public, can be a challenge.  Even though most people ignore families with autism and most of the rest are content to simply glare in disapproving silence, there are always those who feel free to share their opinion of our "bad parenting".  (And then there are those who believe they have the right to physically discipline "misbehaving" children ... luckily an even smaller minority.)

It makes being in public stressful and adding in the stress of actually trying to get somewhere only makes it worse.  I find myself on high alert for every trip to the grocery store or out to the park, which means these trips don't happen as often as they could and tend to be shorter than they might be otherwise.

However, sometimes there are those who display more than just compassion.  Like the mom in the letter, I would have been terrified if someone in an expensive suit with a briefcase full of papers sat down next to us.  Business people tend to have done well by getting things done, which means they don't always react well to mishaps.  I would have been full of trepidation.  Will Alex's non-stop singing bother him?  What if Alex gets into the papers and starts to shred them (one of his favourite activities)?  If it was Nathan, will the incomprehensible chatter be an issue?  Or something I haven't even been able to anticipate.

To find friendship instead of condemnation is awesome. 

And, on a side note, yay for not assuming that any man who isn't cold and aloof around children must be a predator.  This is something I'm trying very hard to counteract for my boys, the assumption that the male is always after something.

It's good to get reminders that there are compassionate people out in the world and that it isn't as frightening a place as we might worry.

Wednesday 28 May 2014

Balancing Work, Life and Kids

With summer coming up soon, I'm realizing that my hard won balance between work, life and kids is about to be upset.

July could be particularly difficult.  We're starting behaviour therapy for Alex next week but I don't know if we'll be up to 5 afternoons a week by the time we hit July.  And our tutor, who usually works with him in the mornings, will be doing special training for the entire month, so won't be available.  This could mean Alex only has two afternoons a week with something to do.  Which means a bored and difficult kid to deal with.

I'm assuming August will be better and then we'll be heading back into school.

Nathan's summer is fairly organized.  He's home the first two weeks of July, which could lead to plenty of fighting.  Then he's got some day camps to go to.

I'm still going to have to get my work done for Emerging Minds and find time for writing.  And there'll still be all the household stuff.  Alex can't tolerate the vacuum or the washing machine being on, so I'll have to get creative with cleaning and laundry.

It's going to be a challenge. 

Tuesday 27 May 2014

Tantrum and Nosebleed

We've been trying to get Nathan (and Alex) to understand that there are consequences to losing their tempers.

This morning, Nathan threw a fit when I made him finish up his homework.  As a result he lost a Lego toy he had recently built and is very attached to.  This prompted him to scream "I hate you" and "I don't love you anymore" before storming off.

A few minutes later, I hear a terrified "Mommmyyyy!" and Nathan comes running (right past Dave, might I add?).  He has a nosebleed and it's a real gusher.

It took about three minutes to staunch the bleeding.  Nathan has had nosebleeds before but usually more in the "wipe and it's done" category.  The fact that it kept coming really frightened him.

I reassured him while I stopped the bleeding and cleaned him up.  I could watch him calming down as he absorbed that Mommy said he was okay and didn't seem worried.

It's nice to know that even when I am the worst person in the entire world, he still wants my comfort when he's scared.

Monday 26 May 2014

I'll Take My Camp With A Side of Rash To Go

Today started off pretty well but took an abrupt left-hand turn when I noticed that Nathan's "sunburn" was actually a rash over his cheeks, neck, torso and arms.

This set off a dilemma I'm far too familiar with: to go to the doctor or not. 

Even though, as a grateful Canadian, finances don't come into the picture, there's still a couple factors to consider.  Time at the doctor's office.  The potential challenges of transporting a sick child.  The patronizing look I get from staff and clients when my child isn't obviously sick.  And the ever fun "am I just being an overanxious parent" debate.

In part, I think I still react based on my experiences with my old family doctor who was a first class patronizing jerk the majority of the time.  (His greatest hits include focusing on my weight when I was asking for a neurology referral because Alex appeared to be having seizures and telling me that autism didn't really exist, I was just being too demanding.)  If we'd have been going to see him, he would have given me a long lecture on how people get themselves worked up watching ER and that it isn't surprising that overly emotional women like me need reassurance from a big strong male like him.

There are days when I feel I deserve extra brownie points in life for not having punched him.

I go through this every time the kids have more than just a cold or fever.  I'm generally fairly laid back.  Human beings are pretty robust and are designed to deal with most of the biological attacks nature dishes out.  For the most part, I'm inclined to let their bodies deal with these things naturally.

On the other hand, I do know there are some things which modern medicine has made easier and safer and less likely to cause long term problems.  It's why I got the kids the chicken pox vaccine even when it was optional.  It's not something they have to go through and I'm not a fan of unnecessary and unpleasant character building experiences.

For Nathan, I decided right away to keep him home and keep an eye on him.  Tried an antihistamine, which ended up making the rash worse.  Then he started to run a low grade temp and his energy level crashed through the floor.  That's when I decided to call the doctor to rule out anything I should be really worried about.

Turns out the rash is from skin irritation, likely from sunscreen or insect repellant.  The low grade temp?  Probably a reaction to the widespread irritation.  Low energy?  That we'll blame on an enjoyable but full weekend.

Our doctor is great and never made me feel stupid about coming in.  I have to get over this particular mental hump.  One bad doctor does not ruin the entire medical profession.

Sunday 25 May 2014

Back From Camp

Nathan came back from Camporee today with enough energy to still go to a birthday party in the afternoon.  Not quite enough to make it through his first soccer event in the evening though but that's understandable.

He had a really good time.  His mood has been up and down lately, so that it's hard to predict if he's going to enjoy something or end up tantruming out of it.  But according to my dad (who took him because I am not a camping kind of person), he enjoyed himself.

The only down side seem to have been the mosquitos.  He's covered in bites, so he looks like he's got chicken pox.  He's even got bites in the corner of each eye.

Luckily, After Bite is working to keep the itching down.  I've found from my own bites that if I can avoid scratching them for 24 hours, they subside. 

I was explaining to him about when I was a little girl and I got the chicken pox, which is like being bitten by thousands of mosquitos.  He was very alarmed at the prospect.

Friday 23 May 2014

Quickstart Refresh Restrart Respite Program

Quickstart is once again doing its draw for free hotel stays for parents whose children have autism.  There are draws for 1 and 2 night stays at local Ottawa hotels.  It's a great chance to get a little bit of a breather.

You can also apply for up to $ 150 to help with childcare expenses while you're gone.

You only need to enter once and then you're eligible for draws throughout the year.

Thursday 22 May 2014

Got the Passports!

Disney moves a little closer to reality for us.  We have our passports for our trip.

We were a little worried about Alex's photo.  Standing still with his mouth closed, face and posture neutral and looking at the camera were never going to happen without freezing him in some form of carbonite.  (Which they probably would object to as well.)

We got one with him looking at the camera, neutral posture and face but with his teeth showing outside his mouth.  So we supplied a doctor's note along with our application explaining that he had autism and this was as good as it's going to get.  In slightly more respectable language but that was the gist.

We do have to carry a copy of the letter with us when we travel as we are likely to be challenged on the passport since the photo does not comply with Canadian standards.  Just another fun document parents of children with autism need to have handy.  My kid has autism and thus doesn't do well standing in line, answering questions, eating airline food or a number of other things travelers tend to expect.

I still haven't figured out who to contact at the Toronto and Orlando airports to see if there's a disability pass or form we can get to help us move through customs quickly.  Surprisingly, there's not a big button on the website saying 'click here' for fast-tracking through customs.  We were told that if he would stay put in a wheelchair, we'd be automatically fast-tracked.  It better be darn fast fast-tracking because I give him in a wheelchair less than 30 seconds.  So we'll have to check other alternatives.

But we have flights, we have hotels, we have character dinners, we have passports and we have child care for Nathan while we're gone.  It's shaping up nicely.

Wednesday 21 May 2014

Who Wears the Cranky Pants In Our Family? A Nathan Quote.

The other day Nathan told me he wants to be just like Daddy when he grows up.

My smile of encouragement quickly turned to smothered laughter when he added: 

"I'm going to be grumpy all day long!"

Tuesday 20 May 2014

Sick and Hopeless

This isn't going to be a pleasant post to read and it certainly isn't one to write.  But I'm doing it anyway because I think there are two important pieces of information to communicate:

1) Sometimes feelings bring you to a dark place.  As a parent, I need to be prepared for that.

2) Those feelings are temporary.  I have to give myself permission to feel them and then move past them or else they can become all-consuming.

I've been sick with a GI bug (or food poisoning) and that's lowered the reserves of resiliency I usually have to draw on.  So today, when Alex soiled himself and managed to destroy his expensive pair of noise cancelling headphones within twenty minutes of one another and then stood there complaining that I wasn't making his dinner fast enough, it was a dark reaction.

I found myself thinking of him as a taker, someone who is always demanding and never returns anything.  I then found myself thinking that the autism means he will always be a taker.  He will always be standing there demanding and demanding and demanding.  Demanding that I maintain a positive emotional equilibrium.  Demanding special care and hypervigilance.  Demanding the things he wants with no clue as to when I'm tapped out with nothing else to give.

Rationally, I recognize this is a dark exaggeration of the truth.  Yes, he will always have trouble picking up on social signals and thus will probably have a bad habit of not realizing this is not a good time to ask.  But that is not a character flaw.

But emotionally, at that exact moment, I felt trapped and hopeless. 

Hope is the greatest resource a parent of a special needs child can have.  People tell me constantly that they couldn't do what I do.  And if I looked on it as a whole, I couldn't do what I do either.  If ten years ago, when I was first picking up my newborn son, someone told me that ten years later, I would still be hand feeding him and diapering him, I couldn't have coped with that knowledge. 

Instead, I moved on with blissful ignorance and did the best I knew how.  I had the hope that the unpleasant things of today were temporary, letting me focus on the pleasant side of having Alex in my life.

Now I know that these things may not be temporary.  But I don't know for sure that they aren't, which means I have to keep trying and put in the effort on the slim chance of achievement.  But it's harder.  I'm now more like the guys in the second wave of an attack on an enemy fortification.  The first wave didn't know about the machine guns or the booby traps.  I do but I'm doing it anyway.  It's harder but no less necessary if I want the chance of taking the hill (or potty training my son).

I know these feelings will pass which gives me the strength to let myself feel the dark stuff and let it go without making it a part of the definition of who I am.  I'm not a bad person who is fooling the world.  I'm a good person who had a moment of discouragement.

When you have these feelings, recognize them for what they are: a realistic emotional reaction to an incredibly difficult situation.  They aren't signs of being a bad parent, a bad person or anything else.  Accept them (don't act on them!) and then let them go.  Take the time and help you need.

Sunday 18 May 2014

A Little Professionalism Goes A Long Way

And a lack of it will get you fired.

Not me.  Someone else.  Namely, one of our tutors.

At the beginning of the year, I hired a tutor to work with Nathan on his fine motor skills.  It's something he needs to practice and a tutor is cheaper than an occupational therapist.  (And Nathan does much better with someone else than with me directing the exercises.)

Once a week, for an hour.  The tutor we got was great except for an occasional communication glitch where he just wouldn't show up.  But I gave some slack since we've all had misunderstandings.

Then his cell phone died.  And there's no voicemail at his house.  Which left me with zero ways to get a message to him.  Inconvenient but I was working with it.

Except now, I haven't heard from him for 3 weeks.  I tried calling his house at all civilized hours and never got anyone to pick up.  This officially puts it over my tolerance level.

I assume he's quit but doesn't want to tell us.

Which leaves me with deciding if we want to get a new tutor for the rest of the year or if we want to wait until after summer.

It really bothers me when people can't let you know things aren't working out, whether its a personal or a business relationship.  Especially on a business front.  I'm not a horrible person with a history of hunting down my former employees so therefore, I feel I'm due the basic courtesy of a quick call to say: it's not working out.  (And I have voicemail, so it would be easy to leave a message if you want to avoid talking to me personally.)

The last time I had to do this was with a cleaning service I had hired.  They came every two weeks but then they didn't come for 3 cleans and no one was answering when I called them.  It turned out that the owner had to fly overseas to deal with a sick parent and had left someone in charge of her business but that person was decidedly uninvolved.  By the time I found that out, I'd hired someone else.  I feel bad about it but business is business.  If a major crisis comes up, you should alert your customers, especially if it requires a prolonged absence.

Friday 16 May 2014

Did I Just Compare My Child to An Orangutan?

This week I watched a special on Animal Planet called: My Wild Affair: The Ape Who Went To College.

It's the story of Chantek, a baby orangutan, who was raised by a scientist, Dr. Lyn Miles, at a University of Tenessee campus back in the 70's.  She taught him sign language using an immersion approach which is similar to how human children learn language.

Chantek became a proficient signer and bonded well with his foster mother and the other team members.

It's an interesting story about changes in scientific and social perspective but that's not what held my attention.

Dr. Miles went through a lot of the same challenges that I'm going through.  Chantek was very observant and an accomplished escape artist.  Two checkmarks which appear in Alex's column as well.  They had to use intensive behavioural intervention to get Chantek to do various tasks.  Okay, duh on that comparison.

They used a token system with washers for Chantek to buy a ride in the car to the Dairy Queen drive-thru and get a treat.  This is now starting to sound eerily familiar, except for the washers part.

Chantek had trouble with aggression.  So does Alex, but this is where the similarities stop, I hope.

Chantek was imprisoned in a research facility after allegedly attacking a female student.  (The description of the attack is vague enough to make me wonder if it was simply a misguided attempt at connection.)  He went from roaming a college campus to being locked in a five by five cell for nine years. 

After the facility, he was transferred to a zoo, where he still lives.  He suffers from boredom and depression, despite having other orangutans to spend time with.

It made me cry when Dr. Miles, who has been forbidden to spend more time with him, came as a member of the public to see him.  He saw her and signed "Go home" and then asked for ice cream.  He's been locked away for almost two decades and still doesn't understand why he's been separated from his family.

It made me think of Alex and his aggression, which may well prompt the government to remove him from our care if we can't control it.  He wouldn't understand being locked away any more than Chantek does. 

I hope I never need to find out.

Thursday 15 May 2014

Rapuzel update and Window Shout Out

We had a fellow from Verdun Windows and Doors come in to have a look at Alex's window.  He poked at it for a few minutes and then showed me where I could drive a screw to prevent the window from opening more than two inches.

Total cost of the operation: four dollars for a small container of screws and washers and some awkward time with the power drill and a screwdriver.

Wa-ay better than the $750 to replace the window we were quoted by another company.  And certainly more helpful than the suggestion from another company that we should board up his window.

The alarm has proven impossible to seal but at least now we can rest knowing he can't get out.  There is a risk in case of a fire but the fellow told me to get a note from my doctor explaining that the risk to Alex's safety in terms of falling outweighs his risk in terms of a fire.  That should take care of things if, say, the fire department or Children's Aid has concerns.

Wednesday 14 May 2014

Life At Comicon

I had an amazing time over the weekend.  I'd been looking forward to it for a long time and almost everything worked out.  Alex went to stay with Avi for Saturday and Sunday, giving Dave and Nathan a bit of a respite.

I saw amazing costumes and took over a hundred pictures.  I'm including some of my favourites here.  I saw almost all of the celebrity panels I wanted to see (except Karl Urban, but I'll explain that later).  I got the autographs I wanted.  I got exterminated by a Dalek and my picture taken with Darth Vader.  It was awesome.

Friday began with a bit of disappointing news.  Eliza Dushku, whom I'd been looking forward to seeing, had to cancel at the last minute due to a work commitment.  The rumour was that she got cast in a movie, so I can't blame her.  Charisma Carpenter came instead.  It was interesting to listen to her and be able to separate her from her character "Cordelia Chase" on Buffy.  But I still got to see some amazing costumes and wander around the booths.

Star Wars was strongly represented this year, as usual.  There were also displays for Dr. Who, Back to the Future and Ghostbusters.

Some of the Star Wars people were collecting money for the Make A Wish Foundation.

I caught this cute little Jawa looking over the booths.

People definitely went with more makeup this year than last year.  There were lots of cosplay workshops for those interested.

Disney also got it's fair share of cosplayers.  And I loved the display of the "new" Disney Princes and Princesses, including Loki and Leia.
 Me and Cinderella.

 An amazing Maleficent costume.
  I felt a little sorry for the Magic Mirror guy but the effect was amazing.
With my VIP pass I was able to get up close to the stage for the celebrity Q & A panels.
 Summer Glau is incredibly sweet and down to earth.  She talked about how she doesn't like how she runs so she tried to convince every Terminator director that her character could just walk really fast.

I got her autograph (I was standing in line for it when Karl Urban's panel happened) and was able to tell her how much I enjoyed that between her efforts and Joss Whedon's, her character River on Firefly, transcended traditional character boundaries.  She was a damsel in distress, a bad-ass fighter, childlike and innocent, and incredibly wise and insightful.  But the character still felt complete.  She teared up a little when I told her, which made me feel like we had a real connection.

She also liked the picture and verse I picked for her to sign, which was of her standing over the Reavers and "No power in the 'verse can stop me."

Sean Astin ran us all through the Goonies pledge and we had a group sing along of the Addams family theme song.  His dad played the original Gomez on the show and used to bring home the film rolls for the family to watch.  He joked it was the first "on demand" service.

He was also quite funny and engaged with the fans.  He seemed as eager for the Q & A to continue as the rest of us.

Christopher Lloyd was surprisingly spry for being in his late seventies.  The audience was a little disappointed that he didn't remember a great many of his smaller cameo roles, although, perhaps that's to be expected since he's done so many and they were expecting him to remember what was probably a day or two of work done three, five or ten years ago.

He said his favourite Back to the Future movie was the third one, since he got to have his first and only on-screen romance.

Edward James Olmos was awesome.  He did his speech from the UN and had us all shouting "So say we all!" together.  When I first saw the clip years ago, I so wanted to be a part of it.  Now I have.

I also got to ask him about the scene in Battlestar Galactica after Starbuck dies.  His character is sitting in front of the model sailing ship he's been building for 3 seasons and he suddenly sweeps it off the table.  According to the commentary, it was completely spontaneous, and the prop was a rental.  I've been dying to know if there were any repercussions.

It took him a minute to remember, until I mentioned the word "rental" and then he grinned and said he figured Adama would be angry and so when the directors came to him, he said "What else did you expect me to do?".  It just ended up being a very expensive day on set.

Ray Park (who played Darth Maul on Phantom Menace) was awesomely funny.  He never stood still, always moving around.  He said he thought he'd completely blown the audition for Star Wars since he couldn't think of anything to do, despite having 20 years of being a martial artist and 10 years of being a professional stunt man.  He described himself as a total fan boy who just geeked out rather than showing what he could do.

At the end of his session, he brought up people from the audience and showed them how to do fancy tricks with the lightsaber.

I didn't get a good picture of Bruce Campbell during his presentation, but he was also hilarious.  He said he was tired of talking about himself and so interviewed people from the audience for an expert "panel".
Nathan came and got to meet R2D2.  All in all, it was an amazing time and I could talk about it for another couple of pages.  But instead, I'll just toss up some more pictures of great costumes.
 Spider-man and Mary Jane

 Captain America.

 Nick Fury and the Green Arrow


 Beast and the Phoenix.

 Glimmer from She-Ra.

 Superman. (Duh!)

 Captain Canada (Vindicator)

 The Daleks.

Happy Geeking everyone.  See you next year!


Tuesday 13 May 2014

Autism Ontario Summer Camp Funding Available (Deadline May 30)

Autism Ontario's Summer Camp Funding for families with autism is now available.  You have to apply by the deadline (May 30th).

It's not a lot of money but it can be applied towards babysitting, respite, any summer program (even if it's not a special needs camp) or therapy.  If you pay money for your child to do something over the summer, you can get some of that money back.

A word of caution.  You can only pick one activity per child for the reimbursement, so make sure you pick one which is big enough to cover your allotment.

Before committing to your one activity, make sure to talk to the person running it.  Some groups are not comfortable with filling out the form, others will only do it at the end of the season.  Sometimes the person running it isn't the one who has signing authority (this is a common problem with summer camps).  Make sure to give yourself lots of time to deal with unexpected snags.

Another word of caution, even if you're turned down for funding, hang on to your receipts.  We ended up being chosen for a secondary round of funding after the March Break.  (You should be hanging on to your receipts for tax purposes anyway.)

You can apply online and it only takes a few minutes.  If it's your first time applying, you'll have to send proof of diagnosis to Autism Ontario.  A letter from your doctor will suffice if you don't want to send your diagnostic report.  I've actually gotten my doctor to write a general one page letter precisely so that I have something simple to send in to these sorts of programs.

They ask for worker information but it's an optional area.  I've never had a problem with switching workers after filling it out or with leaving it blank, so don't worry about it too much.

Monday 12 May 2014

Happy Birthday Alex

Round two of the birthday celebrations went reasonably well.  Alex remembered it was his birthday and as soon as he woke up, was asking for his present.

Since he has shown a great deal of interest in Nathan's Gup X, we got him his own Gup, the Gup A, with his own Captain Barnacles.
After school, we had our visit from a Disney Princess.  Due to expense and schedule complications, we couldn't use a professional princess but my niece graciously offered to stand in.  Alex was interested, but more focused on the ice cream he had been promised.
Alex got his usual birthday bowl of ice cream with a candle and then his favourite cheeseburger and fries for supper.

 All in all, I think he had a good day. 

Friday 9 May 2014

Let the Geeks Rule!

Today is the first day of Comicon which means I will be spending my weekend getting my geek on.

I'm pretty excited about it.  I'm disappointed that Eliza Dushku is a last minute cancellation.  I was really looking forward to hearing her speak.  (Of course, last year I was looking forward to Nathan Fillion speaking and that turned out to be a disappointment.) 

Still, it's a good line up.  Karl Urban, Edward James Olmos, Bruce Campbell, Summer Glau, Ray Park, Christopher Lloyd and others.

There are fewer interesting side presentations this year.  I'm interested in one on professional screen and theatre makeup, since I have an idea for a character who is a makeup artist.  There's a meeting for Ottawa Browncoats (the local Firefly appreciation chapter) but that turned out to be a disappointment last year so I'll skip it.

It's going to be a lot of waiting in line and people watching and I'm going to enjoy every minute of it. 

Thursday 8 May 2014

He's Not Rapunzel

Alex may be enjoying his long hair but we're going to have to get it through his head that he's no Rapunzel.

Yesterday, a neighbour came to the house to tell us that our little girl was sitting half out her window.  It didn't take us long to figure out it was Alex.  This is the third visitation in two years.

We took away the opening crank.  And apparently he's strong enough to open it using his fingers.

We alarmed the window.  He's figured out how to remove the batteries and replace the cover of the alarm.  (Ensuring we don't know it's been disabled.)

I've been making some calls to see about getting the window replaced with something which is easier to lock and keep locked.  Fire codes say all bedrooms must have a window which an adult can crawl through as an emergency exit, so we can't just replace it with a solid, non-opening window.

This is definitely an expense we didn't need to deal with but we don't have much choice in the matter.  While he doesn't appear to being trying to bolt, it doesn't take Parent-Of-The-Year to figure out that sitting on the edge of an open window is bloody dangerous.

I haven't heard back from anyone as yet, but I'm hoping they have some kind of emergency service which will let us replace the darn thing quickly.

I'm also fiddling with the alarm to see if there's a way I can seal the battery compartment.  It means we'll have to buy a new alarm when the batteries die, but that's better than having the darn thing completely ineffective.

Wednesday 7 May 2014

First Draft Done!

I finally finished the polished draft for my novel Revelations yesterday.  78 800 words, 340 pages in Word (double spaced), 35 chapters.  No matter how you slice it, that's a lot of work.

I've spent almost two years writing this book.  Which is about eighteen months longer than I had hoped to get it done.  But still, it's done.

Now I've sent it off to my test readers and I'll wait to see what they think.  Once I've gotten their suggestions back and done my best to plug any holes, then it'll go to a hired editor to go through it line by line.

That will also be the point at which I look at hiring a cover designer.  And once everything is ready, I can put it up on Amazon.  I'm hoping to have it up and available for Christmas.

This is the moment which distinguishes writing as a hobby from writing as a career.  My ego isn't what's important here.  Now it's about making sure I deliver the best product (novel) that I possibly can.

I definitely need to be more disciplined about getting writing done.  During the two years, there were long stretches where I didn't write because of all the other things happening in my life.  Life will always happen and I need to make sure I get keyboard time anyway.

I'll also have to venture into the world of Facebook, Twitter and set up stuff under a pen name.  I need to write some blog posts for blog tours and think about other promotional stuff.  There's a lot of work to do if I ever expect to make any money from this book.

Tuesday 6 May 2014

Field Trip Tyranny

One thing I have discovered about having a child with autism in an integrated class: volunteering for field trips is no longer an optional process.

I can understand the challenge.  A higher risk child in a less contained environment away from routine: extra help will be needed.

Each time I strap on my backpack, arrange to miss work and go in.  But I've noticed that I almost never see the same parent volunteers.  Everyone else gets to pick and choose which trips they participate in, a luxury I'm starting to wish I had as well.  There have been three in the last six weeks, which is hard on me and my work.  (They're understanding but I still need to get my job done.)

I like getting to participate, don't get me wrong.  But when it's no longer really a choice, some of the shine goes off it.  Maybe I'm feeling particularly grumpy because the next trip coming up is an all day outdoor event.  (I'm not an outdoor kind of person and long hikes in a marshland are not something I enjoy in the best of circumstances ... and being responsible for five kids is not the best of circumstances.)

I'm probably also feeling responsibled-out after the party this weekend.  There were a lot of kids to keep on top of, and I was doing it pretty much all by myself.  (Dave has trouble judging social appropriateness <side effect of Aspergers> and so will tend to keep silent rather than make a mistake.)

All in all, I guess I'm just feeling worn out and in need of a vacation. 

Luckily, Comicon is coming up.

Monday 5 May 2014

Happy Birthday Nathan

Today was Nathan's actual birthday.  We began with our traditional breakfast presents and cake:


Then it was off to school for the day.  When he got home, he spoke with various relatives on the phone who wished him a happy birthday.  (And hung up on some of them ... add phone etiquette to the list of social skills to work on.)

He got pizza for supper and then we went out for ice cream (he'd had cake four times in the last three days).  It was low-key but good. 

Sunday 4 May 2014

Superhero Party

Today was the big event of the birthday season: Nathan's party.  We invited 25 kids (17 confirmed, 14 came), I made 18 shields and ID badges, we hired Captain America to come entertain the kids. 

It ended up being a blast.  I have to give full props to the Captain.  He came in and he was full of energy and kept those kids going for the full hour.

Though we will admit to being a little geekily suspicious when the first thing he asked everyone to do was put their hands up.  (Hail Hydra, anyone?)*

* Ed note: this is apparently only funny if you've seen the Captain America movie or watch Agents of SHIELD.

All the kids ended up having a great time and "earning" their shields as official superheroes.  And I am rather proud of how Nathan's cake turned out:


I used a Bristolboard cutout to do the blue sprinkles around the star and the red circles for the shield.  The white is just icing.

This ended up being a crafting-heavy party for me but I've avoided ending up in the Martha Stewart Asylum For Overenthusiastic Decorators.  Nathan really enjoyed it, his friends enjoyed it, it was all awesome.

Friday 2 May 2014

More Bloodwork Results

In my reluctant admission that I am unlikely to become a vampire or werewolf or somehow otherwise find a supernatural method of living forever (preferably young and hot with awesome hair), I've been trying to take better care of myself.

In that vein, I've been following the advice of a dietician, cutting out many of the things which give me pleasure.  At the year check in, I was more than a little pissed to discover that my cholesterol levels were the same, my weight was the same and my blood sugar had somehow shot up into prediabetic range.  (Let me understand this, I eat healthy and I'm somehow worse off than when I indulged in junk food?)

Today I had another update and the blood sugar had come back down and everything else edged down slightly.  I'm still not impressed, nor am I convinced that this plan is really all it's cracked up to be, but at least it is moving in the right direction.  Which is good because I'm refusing to budge on any further deprivation without some major results.

Thursday 1 May 2014

A New Perspective On Bolting

If I've heard it once, I've heard it a thousand times: people with autism think differently than the rest of us.  They have more trouble understanding social cues and context but less trouble understanding patterns.

We're starting work with a behavioural therapist in preparation for a new round of intensive behaviour therapy for Alex.  She gave us one of those insights which seems blindingly obvious in hindsight but which I never came close to on my own.

If you have a child who bolts, never let them precede you anywhere.

Don't let them go out the door first.  Don't let them run ahead to the park.  Don't let them head out to the car while you watch from the doorway.  Always go first and then give them a clear signal that it is okay to follow.

A child with autism won't understand why sometimes it's okay for them to go ahead of you and why sometimes it's not.  From their perspective, there may not be a difference between going out the door by themselves for a family excursion and going out the door by themselves in the middle of the night because they saw a cool car.

Consistency is the key but it's hard for parents (certainly for me!) to grasp what might be linked in their child's mind.  To us, there's a clear difference.  To them, it's the same.