Monday 30 June 2014

Back to Potty Training

There are days when I feel like I've been dealing with potty training forever.  I'm intensely jealous of the books and tapes which promise to have your kid potty trained within the week.  (Although, to maintain my sanity, I tell myself that it would be impossible to have a child transition from diapers to reliably accident-free in less than 7 days.)

It's been two years of struggle with Nathan and I don't even want to do the calculations for Alex.  We thought we had Nathan settled back in December, but come March, he had a major regression.  By May, he hadn't been successful in over a month.

So we went back to the basics.  No screen time until he did a BM in the toilet.  After some initial challenges, he got back into shape fairly quickly.  But that left me with a dilemma.  How do I transition him to the next level of going independently?

I've decided to take a multi-tiered approach.  We're keeping the toilet-screen time connection but we've added new incentives.  If he goes an entire week with no accidents, he gets an extra dollar for his allowance.  If he does 5 weeks with no accidents, he gets a special surprise toy.  We've got a "calendar" where he can put a sticker each day to keep track.

I'm hoping that if we can keep success going long enough, then he'll just recognize what his body is telling him and act on it.

Will it work?  I have no idea.  And given my track record, I'm probably not a safe bet.  But it's the best idea I have so far and as such, that's what I'll go with.

Sunday 29 June 2014

Preparing For The Wedding

We've been preparing for my sister's wedding for quite awhile and now we're getting into the final stages.

One of our concerns was the fact that the events are all quite late at night.  Dinners aren't starting until 8pm or later.  Given that the boys are usually in bed by 8:30, that means we needed some adjustment.

My solution has been to start keeping the boys up later in the hopes of shifting their schedule to a more night-owl friendly one.  We've been keeping them up until 9;30 for the last few days.

Unfortunately, they're still getting up around 6 am.  I'm not sure if something is waking them up (or at least, waking Nathan up since he'll then take care of waking up everyone else).  So now we're dealing with kids who are irritable from being short on sleep.

I'm hopeful this is just a transition period but I'm getting my plan B ready.  They will be staying up late for Canada Day anyway, so I'm going to hold out until Tuesday evening.  But if Wednesday is still an early wake-up, I'll have to shift bedtime back so they can catch up on their sleep.

We've also gotten the final request for their participation.  My sister would like them to walk up the aisle ringing bells and bring the rings up to the front.  This is a do-able option, but I have concerns about them remembering to put the bells and rings down.

I suggested having someone walk them down the aisle but the response was not enthusiastic.  They're going to need support, especially given that it will be an unfamiliar place, they'll be stressed from travel and there will be a large number of people there.

Most kids find being in a wedding overwhelming.  I'm honestly concerned having to be by themselves will just be too large a demand.  But we'll figure it out.

One way or another.

Friday 27 June 2014

Last Day of School

Today is the day when all children shout with glee and all parents cringe (at least a little bit).  The last day of school.

Summers seemed so much longer when I was a kid but now I look at 9 weeks and it almost seems like it's over before it begins.  Maybe because I know the plans and can anticipate.  When I was a kid, I just took each day as it came.

I hope the boys have a good summer.  I hope we all make it through with a minimum of tears and frustrations.

Thursday 26 June 2014

Autism Linked To ...

Yesterday there was an article in the Globe and Mail with the title "Autism Linked to Pesticide Exposure During Pregnancy".  Every few months there seems to be another study linking autism to something.

Just looking at the google prompts, we have autism linked to:

third trimester
gut bacteria
faulty prenatal brain growth

I can certainly understand why it's become a hot topic.  Autism treatment is big business.  I can't find an exact statistic, but with treatments falling into the $50 000 to $ 70 000 per year and 1 in 66 kids diagnosed, the math is starting to look bigger than any other industry.

Society would like something or someone to blame.  We started with refrigerator mothers, who were "traumatizing" their children into autism.  Then we moved on to vaccines and gut issues.  Now environmental toxins are the cause du jour.  (Although each of the others still have their advocates.)

Maybe I'm just in a bad mental space, but I'm a little tired of autism being used to pimp theories.  Or maybe I'm just disgusted by the prevalence of biased sponsored studies done by companies more interested in their bottom line than in discovering the truth.

I miss the days when science actually meant something (although perhaps they never truly existed).  When we believed we could trust results because companies didn't create studies as a form of advertising.  I would like it if we could have a firm commitment to the truth, in all it's awkward complexities, good, bad, useful and surprising. 

We don't know much about autism.  We're at the bare beginning of understanding, which means there are a lot of exciting discoveries to be made.  But we can't do it if the people doing the research have been told to find specific answers.

Wednesday 25 June 2014

Shame and Aggression

If you read this blog regularly, you know that we've been having problems with Alex being aggressive.

Yesterday, he threw a tantrum during his therapy session and began to hit and kick the therapists working with him.

It made me feel horrible.  I hate it when he hits and kicks at me but it is a hundredfold worse if I watch him do it to someone else.  Technically, I know that this is their job, that they came into the situation knowing this was a strong possibility and were prepared for it.  But it doesn't make me feel any better.

I apologized to them and one of them said I shouldn't hold myself accountable for Alex's behaviour.  I wouldn't claim credit if he trained for a couple years and won a gold medal at the Olympics and thus I shouldn't be held accountable if he isn't behaving well.

The argument is logical and sound ... and completely wrong.

I am accountable if my child is aggressive.  Regardless of his age or choices.  I am the one responsible for raising him to express himself in a socially acceptable way.  I tell myself that I've done the best I can and that I may not have had any real chance of success, but that doesn't change my responsibility.

Regardless of how horrible it feels, I know I have to press on.  If there is to be any hope of correcting the behaviour, therapy must continue and I cannot try to sabotage it by trying to keep Alex in a good mood or standing between him and the therapists.  They need to see it in order to deal with it.

Tuesday 24 June 2014

A Nod of Encouragement

I had a great meeting with one of my critique partners yesterday.  She's been talking to me about deep point of view and I've been having to come back and ask her what the difference is between deep pov and what I'm doing.

Yesterday she took me through the first couple chapters line by line to show how I could enhance the story with character reactions.  Basically, every action should have some sort of reaction from the point of view character.  After all, people don't just sit there blankly in their lives, we're always reacting to something (even if to say: this is stupid).

Now I think I have a better understanding of what she was talking about and how to use it to make the story richer.  A more substantial rewrite than I was initially hoping for but not ridiculously so.

And, as a nice compliment, she said she thought my work was good enough to go the traditional publishing route.  I'm still not sold on it.  Self-publishing definitely makes more money per book and the workload seems similar for a new author.  If I can be successful self-publishing, then I would have a better bargaining position for a traditional publisher.  It's all a guessing game.

Either way, still lots of work to do.  I'm really hoping I can find a writing time during the summer.  I don't want two months of stall.

Monday 23 June 2014

Working On A List of Resources

I was doing an update on my Corner Pieces Site and realized I had never quite got around to doing a list of resources for families. 

I'm putting it together now and I'm finding it a challenge.  I'm worried about keeping such a list up to date and accurate (since there is nothing worse than pointing people at help which no longer exists).

But having a place to start calling around is a huge asset. 

Sunday 22 June 2014

Flashbacks: Sent Home Early

On Friday, Alex's class was having a little field trip to Tim Horton's via OC Transpo, two things Alex finds very reinforcing. 

Unfortunately, he was having a very difficult day.  If they told him to sit, he would stand.  If they told him to stay, he would run.  And when corrected, he would complain and whine and throw tantrums.

Eventually, they had to ask me to come and get him since they didn't have enough staff to leave one behind with him at school. 

This triggered some big flashback emotions for me.  When Alex was still in regular school, this was one of the signs of the end.  They would lose control and then ask me to come and get him.  As I drove up, I wondered if this was the start of the same.  And if the specialized autism class can't manage his behaviour, who on earth could?

It's made me think that perhaps I should start doing actual research on the long term options.  All I know now is that the good group homes have a decade plus wait-list and even the bad homes have years before you'll be considered.

The school staff is still confident in their ability to handle him and our behaviour therapist is still confident that they will be effective with him, but both were quick to agree that this is the time for education.  Our behaviour therapist said most families make the mistake of waiting until they're in crisis to initiate a transition to a group home or other programs, which is the worst possible time.  If it's done while everyone still has the energy and resources to maintain a proper transition and support time, then it's easiest on everyone, particularly the then-adult with autism.

Friday 20 June 2014

Nathan Quote: Summer Vacation

I was explaining to Nathan that summer vacation will be starting soon.  He started talking about all the things he wanted to do, so I had to warn him that Mommy still works in the summer.

Nathan: That's okay, Daddy can do it.

Me: Daddy works in the summer, too.

Nathan: What about Avi?

Me: Avi, too.

Nathan: Memee?

Me: Memee, too.

Nathan just stopped on the sidewalk and looked at me as if I had sprouted snakes from my head.  He shook his head and said: 

You all need to take some holidays or else you'll be boring.

Thursday 19 June 2014

A New Bedtime Song

After two years of unchallenged bedtime glory, Vanessa Carlton's "A Thousand Miles" has been supplanted by a new contender:  The Duck Song.

Alex found this one while browsing YouTube.  (I'm not sure how he finds half the things he does but he certainly picks up a fair bit of unusual material.)  The animation is horrible but the song is a catchy ear-worm.  It may well rival the Smurfs theme song.

Alex only likes to listen to the first few verses, so I don't know if the duck ever relents and tries the lemonade or if the man at the stand gives in and gets grapes just to get the talking duck off his back.  It's like an epic struggle between good and evil, capitalism and social equality.  Or just a funny song about a duck with a grape obsession and a dream.

It's a little strange to be singing an actual children's song.  Alex has mostly preferred top-40 pop stuff.  But it makes him smile and he loves singing the duck's part.

It's not the same song I've been singing for the last two years, so I'm happy for the change.  Whether I'll still be happy in six months ... who knows?

Wednesday 18 June 2014

Seven Days To Go ... Not that I'm Counting

Seven days left of school before summer vacation. 

Then all the rules change.

I'm more than a little worried.  I had managed to carve out a certain balance of work, mom-ing and my own interests.  Now that balance is all going up in the air.

9 weeks after that, we settle back into next year's school routine.

Summer is surprisingly short when you're an adult.  But not any less of an upheaval (if you have kids). 

We'll make it through and I may just have to accept having certain things on hold until fall.

Guess that makes it my vacation.

Tuesday 17 June 2014

Dropped One of My Juggling Balls

It is inevitable that I lose track of something, given the number of simultaneous ongoing issues I'm dealing with.  But it still annoys and embarrasses me when it happens.

Yesterday I was supposed to go to Alex's school to sign some paperwork.  I completely forgot about it until the evening.  I went today and it's not a real problem but I still find myself feeling as if I let everyone down.

I'm not sure if everyone is as hard on themselves when it comes to mistakes but I suspect I'm not alone in my harsh expectations of myself.  I've managed to overcome a certain reluctance to ask for help but I still expect myself to manage everything as if I had a team of a dozen assistants.

I hate it when I miss appointments or forget paperwork or breeze past a deadline.  It's something I'm working on: both accepting that my memory isn't what it used to be and that the inevitable failures are not catastrophic.  I tell myself that the world understands and even if it doesn't, I need to be understanding and sympathetic to myself.  I'll let you know if it ends up working.

Monday 16 June 2014

Wedding Countdown

Only a few weeks to go until my sister's wedding.  I have completed the alterations on the boys' outfits and to my surprise, they really like them.  Especially the turbans (or as Nathan refers to them, the "tail-hats", since they have a long stream of fabric coming off the back).  That's one big hurdle down.

I've had to finalize their orders for the main meal.  I decided to go with hot dogs from the children's menu.  Burgers and Mac and Cheese were the other options.  They might have done well with the burgers, but neither of them will tolerate sesame seeds or anything other than cheese and ketchup.  Hot dogs are the safer option.

The beadwork embellishment on my dress is done.  Jewelry is done.  Shoes selected and ready to go.  Dave has a summer weight suit which he'll pick up this Saturday.

Train tickets have been purchased.  Travel arrangements solidified.

I've even got my share of the wedding sewing done.  There are still some table runners to finish but I've decorated all the completed ones.

The final hurdle (and there's always one) are the Mackintosh sashes.  I thought we had four.  Two full length (one ancient, one modern) and two children's (both modern).  Instead, we only have one child's sash.

My mother-in-law is looking through her fabric supplies to see if she has enough Mackintosh tartan to make another child's sash.  Last night, I looked online and it will take 4-6 weeks to order another one.  Too long.

I'm annoyed at myself for having left it so late.  If I can't get another sash, I may not feel comfortable with any of us wearing them.  I don't like the idea of one of the children not having a sash identifying them as part of our family.  We're all Mackintoshes and if one of us is identified as such, then we all should be.

It feels a little symbolic that the sashes would define a 3 + 1 family, which is often how I feel we operate.  Two adults with one child and the second child off with someone else doing something else. 

This wedding is one of the few times we will all participate in something as a family.  Call me crazily sentimental, but I want to mark it as such.

Sunday 15 June 2014

Win Some ... Lose Some, Financially At Least

We got word back from Autism Ontario that neither Alex nor Nathan were selected for funding for the summer camp refund.  Too bad.  It's the first year where we haven't had at least one of them covered.

On the other hand, we got a call from the City of Ottawa telling us we'd won a free week of camp as part of a draw for having registered early.  So one of Nathan's swimming camps has been reimbursed for us. 

Between birthday season, Alex's behavior program, the wedding and our planned trip to Disneyworld, the last two months have ended up being more expensive than usual.  Now, it was all in the plan and in the budget but watching it actually come out of the accounts is not an easy feeling.  But we're now in fairly good position for the summer.  Almost everything has been taken care of and with the boys riding on Saturday, I don't have to take a day off work for the summer.

I just need to breathe and remind myself that this was all part of the plan.  And reluctantly put aside my screaming need to own more Dark-Hunter novels.

Friday 13 June 2014

Beaver Sign Up and Election Night

Yesterday was a busy day.  Not only did I have to go and perform my civic duty (despite my slightly nauseous conviction that casting my vote is about as effective as melting a snowstorm with a candle) but I had to sign Nathan up for Beavers.

Dave took Nathan to most of the meetings last year.  And he would usually come home and say it went terribly.  Nathan seemed to be enjoying it so I was in a real quandary about signing him up again.

However, when I went in, the leaders couldn't say enough good things about having Nathan in the troupe.  And not just the "polite to the parent" approach.  I'm pretty good at picking up when people have a hidden "but" to their compliments.  (Oh, he's such a great kid but I always feel the need for a stiff drink after dealing with him.)  They really liked him.

One leader even told me she'd been worried since she'd never had to deal with an autistic child before.  She'd worried about unpredictable meltdowns and obsessions but found Nathan to be sweet and engaging.  Yes, there were some meltdowns but not that much worse than the other kids.

I think I'll probably take Nathan to the meetings this year.  Clearly the tension of navigating the social requirements is more of a challenge for Dave and I think it's colouring his impressions.  Losing another evening bothers me, but if it's the difference between success and failure for Nathan, I'll do it.

Thursday 12 June 2014

Nathan Quote: On Art

Nathan has been doing an art class with Emerging Minds.  On a few occasions, he's been the only student, which has been fine by him.

We couldn't attend this round of classes, so I explained to him that his teacher would be teaching other kids.  Nathan seemed upset by this so I asked him what was wrong.

He took a big breath and calmed himself down.  "It's okay.  I can share."

I told him I was proud of him for sharing his teacher.

He nodded and then added: "It's okay because I'm still her favourite."

And you know what?  I bet he is.

Wednesday 11 June 2014

Desperately Seeking Hat

For reasons which I am still slightly misty on, the kids in Nathan's class were playing by the school with bubbles and throwing their hats around.

Nathan's hat ended up going over the fence into the backyard of one of the houses next to the school.  The educational aide in the class said he handled it very well.  He was disappointed and sad but agreed to wait until I came to pick him up and then we could go ask the people to look in their backyard.

I found out when I came to pick him up and we counted off houses and knocked on the door of the yard he thought it went into.  Except when the woman answered and went to look, she didn't find the hat. 

Nathan was more upset after that.  It was his favourite hat and I had to tell him that we might not be able to get it back.  The next morning, we left notes on the doors of the houses surrounding the first one, asking people to call us if they found the hat.

No luck.  Though we did get a couple of families calling to tell us they hadn't found it.

The rain is coming today and that will officially end the search.  It's a cheap baseball hat with a cardboard brim, so if it gets wet, it won't be usable again.

Nathan is handling it as well as a seven year old can.  He's disappointed and upset with himself but I reminded him that these things happen.  It's sad but eventually we feel better.

I wonder if this will be a pivotal memory for him or if it will vanish.  We tend to remember these sorts of moments, dropping a favourite Barbie over the side of the boat overrides the memories of the rest of the trip (not that it happened to me, it's just an oddly specific memory that I pulled out of thin air). 

I hope I've provided an example of how to deal with frustration.  Acceptance with just a bit of insight to avoid repetition, rather than beating yourself up with "what if" and "I should have done x" endlessly repeating in your head.

Tuesday 10 June 2014

Upswing in aggression

Something is bothering Alex and his ability to tolerate obstacles is well below what we would normally deal with.

We've seen an upswing in complaining, aggression and self-injury behaviour.  His teacher and I agree that it seems as if something physical is bothering him but I can't figure out what it would be.

We had been doing much better with the head-banging.  Sometimes Alex would just do a ritualistic tap, obviously satisfying the compulsion but not doing any damage.  Over the last few days, he's been hitting hard enough to crack the drywall and dent metal. 

We still have to stick with ignoring the behaviour or else it escalates and he'll do twenty or thirty bangs instead of one.  But it's not easy.  If anyone else hit my child that hard, they'd be charged with assault.

Dave thinks the problem is the increased stress load in the house.  Certainly I've been feeling the pressure with less than three weeks of school and a sharp decrease in planned activities for July.  Alex has begun a new behaviour program, there's the stress of planning to go to my sister's wedding and Dave's work has been spilling over into household time of late.

This could also be a hormone fluxuation.  Alex is ten and that means he's in the window to begin puberty. 

It makes me wonder if I'm going to be able to make it through the puberty years.  Teenage boys are not known as the calmest and most pliable beings in the universe.  If this is only a taste of what's going to happen, it's really going to test my ability to cope.

Monday 9 June 2014

Holding A Job and High Functioning Autism

CBC did a piece on how people with high functioning autism can have trouble holding down a job.  An Ottawa organization, Ys Owl Maclure Cooperative Centre, offers help to employers, particularly the federal government, in understanding how to help those with Aspergers and autism.

Suzanne Ford, the worker interviewed for the article, says they generally get called in when the situation is already in crisis.  She'd prefer to do more education and preventative work.

This article underscores how challenging autism can be.  An employee can have fantastic skills but if he or she can't follow along socially, it makes employers and co-workers uncomfortable.  I've often said that I believe society is more accepting of someone with a disability when a) there is a physical indicator which immediately cues them in and b) the disabled person understands social interactions.

As TV and movies love to point out, there is a thin line between being a jerk and being socially awkward.  (Although it annoys me when Aspergers is used as a punch line for someone being insulting or aggressive.  People with Aspergers are more likely to be withdrawn and be misreading other's insults than delivering their own.) 

I'm glad there are supports in place.  Maybe by the time the boys reach maturity, this will be a much more understood phenomenon.

Wednesday 4 June 2014

First Day Went Well

Yesterday was the first day of Alex's behavioural program.  We met the therapist and she and Alex hit it off right away, which was pretty much the entire purpose behind this first session.

I'm surprised sometimes that people don't seem to realize how slow the process is.  We'll likely spend the next month or two getting Alex and the therapist used to each other.  There won't be any work done except establishing a bond so that Alex will be likely to work with her.

I get parents asking me sometimes how long to expect a program to run and their estimates are usually in weeks rather than months.  It's not just a marathon, it's Terry Fox's cross-Canada run.  Pacing is everything.

So first stage going well.  The next challenge will be when we get past the honeymoon stage in a few weeks and the therapist is no longer a novelty.  Then she'll start to see more of the everyday Alex and we can start thinking about moving forward.

Tuesday 3 June 2014

California Shooter Apparently Had Aspergers

I first came across this little tidbit of information in a Globe and Mail article titled "Autism does not equal murderous rage".

I'm used to seeing autism parodied as the punchline for a joke.  Most of The Big Bang Theory's plots revolve around it.  And before I stopped watching Glee, there was an obnoxious character who claimed Aspergers somehow exempted her from common courtesy.

The autism = violent is a new one for me.  Granted, perhaps it shouldn't be, given how much time and energy I've spent dealing with Alex's aggression.  For him, violence is a tool which gets him what he wants (not having to do what's been asked or getting a toy from someone else).  He literally doesn't understand that other people can feel pain when he doesn't and thus if he pinches someone, they'll hurt and that's why that's bad.

This is such a polar opposite from what Elliot Rodger did that it's hard to figure out where to start.  The concept of being violent in revenge would never occur to Alex.  It's a pragmatic tool and vengeance is the antithesis of pragmatism.  It literally doesn't help anyone.  Ditto targeting random people.  How is that useful?

It makes me feel a little sad and weary to think of yet another hurdle to be overcome.  This may not make sense to non-geeks, but I find myself thinking of Emma Frost's speech to the students in Astonishing X-men about how mutants have to hold themselves to a higher standard of non-violence than everyone else because norms expect them to be violent. 

I'm still hopeful the new behaviour program we're starting can help Alex to understand that violence isn't a good tool.  While he's still a little boy rather than striking fear as a full grown man.

Monday 2 June 2014

Volunteer Fatigue

My writing group has been skidding from crisis to crisis when it comes to making sure we have someone in our President role (which we need in order to maintain our Romance Writers of America affiliation).

The problem is that President is such a hefty job that doing it is impossible if someone also has a full time job, a young family or an involved writing career.  And one of the reasons it's such a hefty job is because of volunteer fatigue.

It is theoretically possible to delegate a great deal of the President's work but to do so, you have to have reliable volunteers.

Now, I'm a big believer in supporting organizations I belong to.  I actually won't join things if I know I don't have the time to participate as a volunteer.  I've spent the last 3 years on the Board for ORWA.  However, I've told them that I have to scale back on my time commitment for next year because with Alex's therapy ramping up again, my available time is going to start shrinking.  Either directly because of the therapy or because I'll need to work more to pay for it.

I'm not sure why we've had a challenge with keeping our volunteers and there has to be a better way to do it.

I'm a little sad to think the group might fold.  It's been going for 30 years at this point.  Every year, it's the same crisis over and over.  Who's going to be in charge?

The only answer I have is: not me.

Sunday 1 June 2014

In Home Interview ... Here, boy! (Wait List Tips)

As I was going through the list of things I need to deal with this week (yes, I have an actual list), it occurred to me that it's been awhile since we heard from National Service Dogs.

Specifically about the in-home interview which they said would take place in 4-6 months, about 4 months ago.

It's not a surprise inspection, which is good.  I don't think I have anything to hide but I also have a fairly busy schedule most of the time.

Now I go into the "how long do I wait before contacting them" mental dance.  I don't want to be pushy but I also don't want to be overlooked.  It's a fine art which I've developed over the years of being on wait lists.

My usual rule of thumb is wait until half-way through the window.  Unless I'm pushing for a cancellation, in which case I'll ask what their policy is.  In some cases, you can get on a list.  In others, it's first come, first served for cancellations, in which case I call or email once a week.

I always make a point of being brief and polite when I contact them.  I realize I'm technically bothering whoever is answering the phones so I try to minimize the irritation factor.  (Though I'm sure many people have rolled their eyes before picking up my calls.)  The point is to try and keep a positive relationship between me and whoever is the gateway to the program/appointment I want.  That way, even if I'm not the first person to call for that cancellation, they may save it for me anyway (I've had that happen several times).