Tuesday, 23 December 2014

More Opportunities (March Break Respite Fund and Free Tablets) and A Merry Christmas

Hi everyone,

Autism Ontario's site says it has opened up its March Break Respite Fund for 2015 but the link they've attached to their email isn't working so I won't include it here.  I'm hoping the site is just temporarily down and we'll all be able to apply over the holidays.

I also was forwarded this article about Samsung giving away tablets to families with autism.  The article doesn't explain what the criteria are but the deadline is January 16th.  The program they describe, Look At Me, sounds interesting.  It's designed to encourage children with autism to increase their eye contact and correctly identify emotions on people's faces. 

I think this will be my last post for the holidays.  I hope that everyone has a restful time celebrating the winter solstice celebration of their choice.  Thank you all for following my family's adventures and misadventures. 

Sunday, 21 December 2014

No Cost Vacation For Families With Autism

The deadline to apply for the vacation is December 31st.  I don't know if travel costs are included but a week in the sunshine sound pretty nice right about now.
 
Here is the information on the contest:
 
In January 2015, 52 CANADIAN families who have a child with autism will be selected to spend a week at this beautiful property on the Emerald Coast of Florida, USA.  A no-cost vacation!

"In early 2012, Global Governance Advisors (GGA) purchased its first vacation home in Sandestin, Florida to serve the needs of families living with autism. The GGA team raised $2 million for this initial residential property on Florida’s Emerald Coast that offers no-cost vacation stays to children with autism and their families.
GGA Vice Chair Luis Navas has firsthand experience with autism, as his son developed a regressive form of the condition at age 2.  Mr. Navas describes his motivation for purchasing the Emerald Coast vacation house, which comfortably sleeps 14, as stemming from a conversation he had with a corporate CEO who had quietly contributed the majority of his income to charitable endeavors."
 
The one week stays are awarded to Canadian families affected by autism and in a financial position which does not permit them to vacation.  The families are selected in January.
Each family is asked to submit:
1. an overview of their autism story that is at least 500 words
2. proof of autism diagnosis
3. proof of being in financial need (T4)
4. a family photo
Email your application to: Luis.Navas@ggainc.com

"For more information on how families living with autism can reserve some vacation time at the Sandestin location, please contact Luis at:

Friday, 19 December 2014

Nathan Quote

Nathan has been quite excited about seeing his aunts over the holidays.  He's developed quite a few plans for them, going to museums, going swimming.  If it's up to him, they'll spend the entire time doing things with him.

Last weekend, we went to see Penguins of Madagascar (which was cute) and one of the trailers was for Annie.  Nathan has been looking forward to Annie for awhile, so when it came on, he announced that he wanted to see it.

Me: Okay, but it's out at Christmastime and remember your aunts are going to be here.

Nathan: (pondering)

Me: We can go see it after they've gone home.

Nathan: (slowly and with great seriousness)  No.  They should come to see it with me so they can enjoy it.

Thursday, 18 December 2014

Planning for the Holidays

As always, despite my attempt at early preparations, I have been caught by the last minute.

Last night I was scrambling to put together the Christmas cards for the teachers, educational aides and therapists.  With only today and tomorrow left, I realized the last minute had definitely arrived.

Each of them got a picture of Alex/Nathan/both and a gift card (Tim Hortons, Staples or Chapters).  It's not a lot but considering that Alex has one teacher and 3 aides, Nathan has 1 teacher and 1 aide and there are 2 therapists, even small amounts add up quickly.

This weekend, I have to put together the Christmas card packets to send out to family and friends.  I'm including pictures from Disney for them as well as the usual family portrait.

I think I'm also going to have to have a wrapping party for myself.  Things are moving quickly!

Wednesday, 17 December 2014

Snow Day Conundrums

Today is the day every kid loves: Snow Day.

Except for my kids, because I'm mean and make them go to school anyway.

I've heard a lot of debate about whether or not kids should have to go to school during a Snow Day.  The schools are open but there's no transportation.  Roads are slick and traffic around the school tends to be bad as parents who don't usually drive their kids rush to drop them off and get to work.  On average, only about a quarter to a third of children are present on a Snow Day.

I've heard many parents complain that if the transportation is shut down then the school should be shut down as well.  The schools don't shut down since they would then lose provincial funding for that day, which does make the situation more questionable.  After all, if it's not safe for the kids to come, how is it then safe for the teachers to come?

I always had to go to school on a Snow Day if we were within walking distance of the school.  I liked them.  It was quiet with plenty of time to read or do crafts.  In fact, one teacher used to send us all (usually only 3 of us) to the library after lunch for "free-time".  In retrospect, I wonder if she ditched out early.

The boys seem to like them too.  They have one on one time with the teachers and a lot fewer distractions to cope with.

It's a bit of a hassle having to drive Alex to school and then pick him up but it all works out.  And I'm not struggling for childcare options, which makes life easier for me.

Tuesday, 16 December 2014

Incompatible Behaviours

Behaviour therapists will tell you that the best way to correct an unwanted behaviour is to replace it with an incompatible behaviour.  The example usually used is to prompt a child to clap when they're flapping their hands.  It's impossible to both clap and handflap at the same time and clapping is more socially acceptable.

Coming up with a suitable incompatible behaviour taxes my creative powers but I had a good one yesterday.

We were at the dentist for Nathan and he kept reaching up to fidget with the tools.  When I told him to keep his hands on his tummy, he started pushing them inside the waistband of his pants.  So I needed to come up with a behaviour which would prevent both fidgeting with the dentist's tools and putting his hands in his pants.

My solution: hook his thumbs in his belt loops, like a cowboy.

It worked.  As long as he had the thumbs in the loops, he couldn't stick his hands in his pants or reach the tools.  And if a hand drifted up, I just reminded him to put the thumb back in the loop.

Monday, 15 December 2014

More Good News: Service Dog Approved

Over the weekend, we got notice that Alex has been officially approved for a service dog. 

There's still an 18-24 month wait before we're likely to receive our dog, but we're officially on the list.

There was a reminder about fund raising and that it wouldn't affect how quickly we got our dog but was still encouraged.  They even gave us a code so that they can track which donations are for which child.  (Although, again, they emphasize that the donations don't actually go towards that particular child's dog but rather into a general fund.) 

To me, if it really didn't matter, they wouldn't track it.  But I don't mind, donations are how they keep their business afloat, and research shows that people are more generous if their names are attached to a donation.

There's a workshop on the training process and what a service dog can and can't do for a family.  We'll get to attend that via Skype or a phone call because of the distance between us and them. 

Then it's the seven day parent training workshop, which we must attend (at our own expense) and where we will get final approval and get to bring the dog home.

I'll have to do some thinking about fundraising.  It's not really my forte but I'm sure I can get some suggestions.

Friday, 12 December 2014

Reviewing Progress

We had a meeting yesterday with the staff from Alex's behaviour program to review his progress.  The results are very encouraging.

His compliance level is between 80-90 percent, which our behaviour therapist tells us is really as high as it should be.  (We don't want him to obey any instruction from any person without thought.)

He's now sitting for 3 minutes or more on the toilet without complaint.  The trampoline park is clearly encouraging compliance in that respect.  He's had three successful BMs on the toilet, which everyone is pleased with.

They're going to begin an academic program for him, focusing on his word comprehension and verbal skills.  We're going to expand the materials for reading comprehension, using song books, comic books as well as stories and non-fiction.

His aggression and self-injury have gone down significantly.  We still get blips and spurts but we're also getting days without them.

I'm really pleased with our progress. 

Wednesday, 10 December 2014

Debate on Physical Restraint

I was debating the wisdom of teaching parents techniques for physically restraining their children with a friend and I thought it would be interesting to share some of the points on both sides.

Against: There is always a risk that either the child or the parent could be injured during a physical altercation, thus parents should be discouraged from using physical methods of control.  We discourage spanking and other methods of corporal punishment, physical restraint is more of the same.

For: Some children with autism (and other challenges) can and do engage in physical confrontations with their parents, siblings and other children and bystanders.  A parent who knows the proper techniques can restrain their child to prevent harm to themselves and those around them.  They are less likely to cause harm than an untrained parent, who is likely to still try restraining the child, but with less chance of success.

Against: Since it is upsetting to be attacked or watch your child attack someone, parents are likely to be angry when attempting to restrain their child, making it hard for them to judge their strength and speed.

For: A trained parent, the confidence of being able to deal with the situation makes it less likely they will become angry.  Just like knowing the proper behavioural techniques makes it less likely a parent will become angry at a child's improper behaviour.  If you know how to deal with it, the situation is less overwhelming.

Against: Parents should focus on behavioural solutions, not physical ones.  They are more effective long term and solve, rather than mask, the problems.

For: Behavioural solutions are more effective and better long term.  But they take a long time to work and parents are stuck with difficult situations in the meantime.

Personally, I'm in favour of giving parents the tools they need.  I received training on physical restraint techniques and it's saved myself and others from injury a number of times.  It doesn't always work, but it means I'm not wading in helpless when Alex is trying to attack someone because he feels overwhelmed.  My goal is always to try and prevent such incidents by being aware of his triggers and sensitivities and we've done extensive behavioural work to try and eliminate aggression as his response to frustration.  But the reality is that there were and are a large number of incidents where I needed to intervene.  And so I'm glad I knew what to try and more importantly, what to avoid at all costs.

I didn't include it above but I have heard the argument that parents should just take the hit from their child if that is what is necessary during a physical tantrum.  The problem with this argument is that it potentially leaves the parent incapacitated.  I've had my nose cracked and ended up with blood pouring down my face (because I wasn't holding Alex correctly and he got my nose with his head.  He was four and a half at the time.).  At that point, I was helpless to do anything to deal with him and if we hadn't already been at home, he could have taken off or hurt someone else.  People shouldn't assume that a child cannot cause any real harm.  They may be smaller, but often they are not holding anything back, which means they can do real damage.

Also, the time when a parent can physically intervene is limited.  As a child gets larger and stronger, physical intervention gets riskier.  More force is needed and the risk of injury to both parent and child is greater.  It is always better to deal with aggression while the child is still small.

I'm sure plenty of people will be horrified at the idea of restraining a child and that's why there's a debate about it. 

Tuesday, 9 December 2014

Visit to Santa

For the last week, Alex has been working on "earning" a visit to Santa and a ride on the bus in therapy.  Yesterday, he earned it.

I drove him and the therapist out to Bayshore, expecting not too much delay to see Santa and instead found an hour-plus long line.  This put us in a real challenge since we had to be back at home to pick up Nathan and the therapist had an appointment of her own to get to.

We waited, hoping the line would move quickly but after an hour (and with 10 minutes left before absolutely must leave time), we were only halfway.  I tried to prep Alex that we might have to leave without seeing Santa and he was miserable about it.

I went to the front and asked one of the elves if there was any way we could have an exception.  I'd heard they were making exceptions for kids with disabilities, but generally, if we can wait, I prefer to do that.  It's good practice for the boys and a more realistic and fair option.

The elves got him in to see Santa right away and he asked for a Super Grover 2.0.  He remembered his manners and seemed thrilled to get to spend time with Santa and the elves.  We got home in time for Nathan and the therapist got to her appointment on time.

Thanks Bayshore Santa and crew, you made his day.

Friday, 5 December 2014

Cracks In the System and Waitlists

I came across this article yesterday about an autistic boy in Gloucester who is somehow considered "high functioning" enough not to qualify for help within the school board but still needs assistance.  His parents have been told he doesn't qualify for the autism class within his school and is only being permitted to go to school part time because of behaviour issues.

What really caught my attention was the statements from the school board at the end of the article:

"Is there a waiting list at any school?

As a result of our move to a geographic model for autism classes, there are currently no children on the waitlist for ASD. There are no children on the waitlist for DD classes."

That statement is, I suspect, the reason why this boy is not receiving help.  A few years ago, there was much ado about waitlists and the government and other organizations promised to eliminate waitlists.

Unfortunately the strategy seems to be to deny people entry into the waitlist rather than expand services to meet the need.  I've heard of several families being discouraged from going on the waitlist for services with OCTC, even though that denies them access to different services which require them to be on the waitlist.  The school board seems to be taking a similar approach, insisting that children don't need special help, it's just a matter of discipline from the parents and teachers.

For the record, I think the teachers in the school board do amazing work.  They struggle among so many handicaps and regulations to find ways to help their students.  The problem is with the board and with managing perceptions.  They want to be seen as proactive and supportive but don't want to allocate more resources or risk being accused of favoritism.  So they refine the problem to make it seem better than it is.

Rather like saying that we don't have a homeless population, instead we have a community of "outdoor enthusiasts". 

Thursday, 4 December 2014

Nathan Quote

Yesterday, Nathan announced at dinner that when he grows up, he's going to get a job at Emerging Minds.  Then he can stay home and take care of his kids.

I thought it was sweet.  :)

Wednesday, 3 December 2014

Increase in Head-Banging

Over the last two weeks, we've seen a big increase in head-banging frequency and severity from Alex.  His compliance (without complaining) has gone down. 

Dave and I have been talking about last year, when we saw similar behaviour after we reduced his medication.  It was supposed to be the start of a gradual weaning but when reducing it by 1 ml daily produced such difficult behaviours, we never went past that threshold.  We kept it down for a month, waiting to see if his behaviour would stabilize and it never did.  And it took another 3 months to get back to our baseline after we went back to a full dose.

This year's behaviour has no such explanation and is casting doubt on our results.  Perhaps his behaviour had nothing to do with the medication.  His doctor reaffirmed his dosage within the last week, so it's not that he's outgrown the original dosage.  Maybe something else happens at this time of year which triggers the difficulty.

If the pattern is consistent with difficult behaviour lasting until March or April, then we'll have to start suspecting that there's a seasonal trigger.  If this is a short term burst (likely triggered by the changes in expectation and routine), then it should resolve itself much faster.

Meanwhile, we've had to institute a policy of removing toys when he headbangs.  No attention, simply collecting a favoured toy and putting it out of reach.  Once he's calmed down, he's warned what the next toy target will be if he headbangs again.  If he's beginning to do the anticipatory whine which preceeds a headbang, then he gets a warning.  He is definitely using the headbanging as an attention tool.  He will look to make sure we're noticing how hard he's banging.  My hope is that losing the toy will make it not worth it, particularly if he's not getting any attention for it.

Tuesday, 2 December 2014

Christmas Shopping With An Elf in Tow

Every year I book off a day to do the Christmas shopping.  I find hitting the malls during the week in early December is less cringe-inducing than trying to muscle through the crowds on evenings and weekends.  It's usually part of a careful plan, booked over a month in advance.  This year, I planned for Dec 1st.

Which is why Nathan's cough and sniffles yesterday made for a real challenge.  I had two separate questions to evaluate: should he go to school and should I still go shopping?

Should he go to school?  That one was obvious.  He was hacking like a two pack a day smoker.  I had to remind myself that if it wasn't Shopping Day, this wouldn't even be a debate.

Should I still go shopping?  Perhaps it wasn't community-minded of me, but I decided to bring him along.  He wasn't running a fever and he seemed to be relatively high energy.  I decided to take him with me and see how far I got. 

Now there had to be a few caveats.  I couldn't buy any of the planned presents for Nathan or Alex.  Nor could I send Santa any suggestions for his presents for the boys.  But I could still buy the presents for the rest of the family.  Whether or not Nathan will keep them secret is an entirely separate issue, but he was fairly bored so I'm hoping he wasn't paying close attention.

I managed to get almost everything done.  There are still a few hold-outs where inspiration did not strike.  I brought along Nathan's iPad, a few books and his headphones.  Those definitely helped, especially since I had to pick up some new jeans for myself, which left him sitting in a change room with nothing to do.

He has decided that Christmas shopping is really boring and doesn't want to go again.

Sunday, 30 November 2014

CHEO Visit and Dog Update

Life happens and sometimes there's nothing you can do about it.

Last week we were supposed to meet with the representative from National Service Dogs.  Unfortunately, I ended up at CHEO with Nathan, worried about possible appendicitis.  Dave and Alex were here and they said the interview went well.

They brought a dog with them and Alex was nervous but intrigued.  They saw Dave using the clicker to track Alex's demands, which reassured them that we would maintain the dog's training.  And they asked us if we would be willing to rehome the cats if it came to a conflict with the dog.  (That's a very difficult question as the cats are very elderly and neither of us like the idea of kicking them out of the only home they've ever known.)

Nathan did not have appendicitis but he's been fighting one bug after another since we got back from CHEO.  Vomiting, earaches, sore throat, it's like a germ cornucopia.  It's why I haven't been updating the blog lately.

I'm nervous about having missed the interview, particularly when they said they needed to speak to both parents.  But at the same time, I was at the emergency room with my child.  If that doesn't count as a valid exception, I don't know what would.  (Car accident?  Being kidnapped by a drug lord?)  I called her the next morning on her cell and she said she would call me back later that day but she didn't.  I've sent an email telling her that I'm happy to do a phone interview if they have questions for me.

One crucial bit of information is that we haven't been approved yet.  Therefore our two year wait has not yet begun.  Dave got the impression they were recommending us for approval but it's not solely their decision. 

Right now I'm too tired to think about the implications of that.  I want to focus on getting Nathan better, getting my work done, getting my book out and preparing for the holidays.  Everything else can take a backseat for a little while.

Wednesday, 26 November 2014

Step Back For Toileting

We thought we had our younger son's toileting under control but over the last four months, he's gone from an accident once a month to every couple of days.  Mostly when he's sitting in front of the computer.

Our behavioural therapist told us that by giving him the iPad to watch while he was on the toilet, we've likely linked watching a screen and using the bathroom.  She recommended getting rid of the iPad and starting over.  Especially since he's territorial about the computer and won't let it go to use the bathroom, even if his brother isn't there to claim it.

So we're going back to basics.  No iPad in the bathroom and no books either.  (She recommended a completely distraction free environment.)  If he wants to use the computer, he has to spend 1 minute on the toilet first (we'll increase that to 2-3 minutes later).  While he's using the computer, check every 5 minutes for clean pants (another suggestion from the behaviour therapist, focus on achieving the positive rather than avoiding the negative).  If he's clean, he gets a treat.  If he does a BM in the toilet, he gets a big reward.  (I'm leaving the reward as a surprise, his curiousity should help us.)

Hopefully this will work once and for all.  It would be nice to be able to rely on at least one of the kids to use the toilet when necessary without adult supervision and direction.

Tuesday, 25 November 2014

Doing the Math for Laundry And Bedwetting

My husband finds math reassuring because the numbers never lie.

I find it frustrating for the exact same reason.

Of late, I've been having a real challenge keeping up with laundry in our house.  It feels like I'm constantly running behind.  Wondering if I was being too hard on myself, I did the math.

We have 4 duvets in service for the winter, to be used for both boys.  Our washer fits 1 duvet at a time.  It takes 70 minutes to wash and 120 minutes to dry.  (Or at least dry enough that I can hang it over the stairs and let it air dry the rest of the way.)

Alex wets the bed at least once and sometimes twice per night.  At least twice a week, we will also have to wash Nathan's duvet. 

Here comes the math: 3 duvets to wash = 6 hours of dryer time, assuming I'm prompt and can change the loads as soon as they finish.

I need to do a load of the boys' clothes every other day, add one more wash and dry cycle.

I have to do Dave and my clothes at least once per week, another wash and dry cycle.

And then there are assorted towels, our bedsheets, emergency washes, delicate items.  On average, I need between 6 and 8 hours each day to do laundry.  A lot, but not impossible.

Until you factor in the part where Alex cannot tolerate the noise of the dryer motor and finds the beeping buttons on the washer irresistible.  He will stop the washer mid-cycle which means starting over from the beginning.  (Our washer does not indicate where a load was stopped and since I don't always catch him in the act, I get a surprise when I go to switch over the loads.)

Alex is away at school for 3 hours.  Which is one dryer load.  Our only other opportunity is after he goes to bed, which gives us another dryer cycle.  Which is why I've been having to haul out a chair and sit in the hall in front of the washer and dryer.  Usually listening to him throw tantrum after tantrum at not being able to turn them off.  And I'd better hope I don't have to go to the bathroom during the 2 hour cycle because he will be there the second I'm not at my post.

Our washer and dryer are off the main hallway in an alcove.  No door to lock, only a curtain.

This is incredibly frustrating for me.  Doubly so since Alex is the one creating most of the laundry and preventing it from being washed.  And he has zero comprehension of the impact of his actions.  The beeps are rewarding so it doesn't matter what punishment I offer, he's already gotten what he wanted.  The motor noise is intolerable no matter what rewards I offer.

I've gotten offers to use other people's machines but the act of having to haul dripping soiled clothes and duvets to someone else is both gross and adds too much time to the process.  The only somewhat workable solution is to stay up late to maximize the bedtime laundry opportunities.  And make sure Alex is out of the house on weekends to give us a fighting chance.

Monday, 24 November 2014

Sleepover at the Museum

This weekend was the annual white-tail Beaver sleepover at the Museum of History.  With much sadness, I must report that Ben Stiller's documentary "Night at the Museum" has proven false as a roadmap.  Not a single exhibit came to life.  Oh well.

It was still a good time.  There was a talk on the fur trade and half the kids got to be natives and the other half were the Europeans.  They negotiated their own fur trade and the natives (which included Nathan) did pretty well, negotiating some pretty tough deals for metal goods like a bucket, axehead and fire kit, as well as some beads and metal brooches. 

After a rather spectacular example of free market trading, the kids each got a drum and participated in telling a Nigerian folk tale about a little caterpillar who wanted some sleep and pretended to be a monster, scaring the other animals.

We got to see the IMAX film, Galapagos, which was pretty cool.  (I love nature films so I was having a blast even though my 3D glasses didn't quite focus.)

Nathan did incredibly well.  He paid attention, he participated and he was well behaved. 

At least until morning.

My little dude did not sleep at all through the night.  He was incredibly quiet but every time I woke up, his eyes were wide open and staring at the ceiling.  And another mom near us noticed the same thing whenever she woke up.

The night was a short one anyway with campfire finishing after 11 and lights back on at 6.  He was quite upset in the morning and had a lot of trouble getting himself ready.  I decided to bow out on the morning activities and bring him home early.

He made it through most of the day but by 5pm, his little eyes were closing and I insisted on an absurdly early bedtime.  That sparked a tantrum (mostly expected) but by 6, he had calmed down and was tucked in bed.  Usually I leave my kids alone to work through their tantrums.  It saves emotional wear and tear on both of us and discourages tantrums for attention.  Once they've calmed down, I go back and offer negotiations to get what they want. 

This time I stayed with Nathan and held him until he calmed down (although I suspect I lost some hearing from shrieks).  I talked about how I sometimes had to go to bed super early after a sleepover when I was a little girl.  I talked about how proud I was of him for behaving so well.  I explained the theory of evolution (since we'd seen the Galapagos film).  Anything I could think of to distract him and get him thinking instead of reacting.  For the record, the theory of evolution worked.  The simple tale of a young man named Charles Darwin who spent a lot of time thinking about why animals looked different from each other.  I used the example from Origin of Species of different types of finches on the Galapagos (although it's been a really long time since I read that book and so I may have gotten some details oversimplified.)

After my discourse on why Galapagos finches have different beaks suited to their prey, Nathan was calmed down enough to get into his pajamas, have a story and his bedtime song.  And my parents worried my degree in Humanities would never actually be of any practical use.  Showed them.

Sunday, 23 November 2014

Moving Ahead For Our Service Dog

It looks like we're moving ahead with our next step in our application for Alex's service dog.  They'll be coming by for a home visit this week.

We're having a little bit of a "high school study date" reaction.  We want to look like ourselves but the nicest, tidiest version thereof.  But not obviously tidied so that they wonder what we're hiding.

I'm excited about moving forward and a little nervous about putting myself out there to be judged.  I keep telling myself they're probably just wanting to confirm that the house is large enough to accommodate the dog and that we're not obvious psychos.  I know I'm working myself up over nothing.

But I think I'll go straighten up the bookshelves, just in case.

Friday, 21 November 2014

Parent Teacher Results Are In

For the first time we met with the boys' teachers and weren't given a massive to-do list.  They're both actually doing relatively well.  There's still stuff to work on but not an overwhelming amount.

Alex's teachers are really pleased with his compliance levels and his ability to regulate himself under stress.  Apparently there's another child who has developed an obsession with Alex and wants to follow him around all the time, which bothers Alex.  The teachers have taught him to say "I want to play alone" and then get a teacher if it doesn't work.  And they've observed him doing both independently, without any prompting.

Alex is doing well enough that they are starting to think about partial integration options.  He's not ready yet but they think it might be possible for him to join the choir for the spring play or possibly join a math class with his neurotypical peers.  It's a small step but a huge one, if it ends up happening.  If he can tolerate a busier and more distracting environment, that would speak well to his ability to function in the general world as an adult.

Nathan is also improving.  The teacher said it's been about a month since she saw a tantrum.  He still gets upset and angry sometimes but he's not screaming or hitting people, which I will take as a win.  Apparently she has to watch him to make sure he's not sneaking books during work time.  But he's taking her correction with good grace.

For Alex, we'll continue to work on coping strategies, impulse control and toileting.  The latter is a big barrier for any kind of integration.  For Nathan, we're going to start teaching him to type since he still has an extraordinary amount of trouble forming his words and letters with a pencil or pen.  The teacher is fine with him typing his homework (I guess she trusts us not to be doing it for him).

I'm really encouraged, which I frankly needed with the cold weather and all the difficulties recently.

Thursday, 20 November 2014

New Compliance Program for Alex

One of the goals we're working on with Alex's behaviour program is having him follow directions without whining about it.  A lot of the time he will do what we ask but he's complaining at top volume while he's doing it.  At first, we accepted it, telling ourselves that at least he was doing what we were asking.  But as he gets older, we realized it would be less and less acceptable.  Bosses, for example, tend to react badly if you whine and complain about what they've asked you to do, even if you do the task perfectly.

Our first foray at this was to have set times during the day where he had to listen and follow directions without complaining in order to earn his screen time.  We chose instruction-heavy points in the day: breakfast, after school and dinner-time.

However, after five months, he's really not showing any sign of connecting earning the screentime with not complaining and following directions.  So our behaviour therapist came up with a new plan.  Now we have a clicker and every time he follows ten directions without complaining, he earns screen time.

Sadly, part of the idea for this came from a documentary on how they train cats and dogs to do stunts and tricks for movies and TV.  The trainer has a spoon with a treat as well as a clicking device.  When the animal does what the trainer wants, he clicks the device rapidly and then gives the animal its treat.  The animal learns that it's doing the right thing when it hears the clicks and that it's earning a treat.  We've discovered there are a lot of similarities between teaching someone with autism and animal training, which I suppose makes sense.  In both cases, the understanding of complex social nuances is missing.

Now Alex gets an audible click when he's doing what we've asked and he can look at the counter to see how close he is to getting his reward.  If he whines, we tell him "no click" and can show him the counter is staying the same.  It's a clear, unmistakable audio signal as well as a visual one, which should help him to connect the dots.

Luckily, I don't have to train him to play the piano, jump through a hoop or tolerate Tom Cruise.  Just keep his inner monologue on the "private" setting.

Wednesday, 19 November 2014

Well Begun and Half Done

Well, I did manage to get my editing done before my deadline.  There's still some trimming and polishing to do but I have another 3 weeks to do that.

It's been a hectic week between a visit to the trampoline park, work, parent-teacher interviews, doctor appointments and just trying to get everything done.  I'm more than a little wiped out with trying to keep up with it all.

But I remind myself that I am making progress.  And that means a lot.

Thursday, 13 November 2014

Got to Hunker Down and Get My Work Done

For once, this has nothing to do with autism and parenting but it is still work I need to focus on. 

I'm looking at publishing a novel in January (check out www.pastthemirror.com for more details).  I need to get the manuscript ready for line editing soon, which means I need to have it done by Monday.

Unfortunately, that means I probably won't have time to post between now and then.  I hope everyone can understand.

Tuesday, 11 November 2014

Being A Less Competitive Mom

I've been re-reading Maternal Desire and the chapter on maternal competition struck me.  I first read this book just after Nathan was born and it spoke to me greatly.  The thought that women might actually want and choose to be primarily mothers is a foreign one in our society.  It's generally assumed that stay-at-home moms are bored, working beneath their skill levels or desperate to get out.  Particularly if their children are under 4 years old.

Now I find there are large portions of it which don't feel as if they apply anymore.  Some of them have to do with neurotypical development which never happened with my children but the biggest one was about maternal competition, the subtle jockeying of bragging and the inherent belief that one's children are the best, brightest and most beautiful creatures ever to walk the face of the earth.

I love my kids but I wouldn't describe them with a  superlative.  I couldn't.  I see more advanced children all the time.  I put in more work to achieve fewer results.  They are good-looking, it's true, but that's not really the hook I'm looking to hang my hat from.  I don't even see myself as a particularly exceptional mom on either the neurotypical or special-needs side of the fence.  I think I'm actually fairly average.

Maybe it's the knowledge that I can't possibly win which has led me to withdraw from competition.  Maybe it's the hurt which I still feel when I see a two year old chattering about his or her day to their parent.  I cannot avoid the realization that by all normative standards, I am a failure.  It's doubtful whether my children will be able to attend university, the pinnacle of parental success.  It's almost certain that Alex will need lifelong support and care. 

But in letting go of the competition, I can also let go of those goals and see they are not as important as I once thought they were.  We had a joke when we named Alex that we chose his name so as to sound appropriate to great things: Alexander George Mackintosh was elected to his fourth majority as Prime Minister vs escaped serial killer Alexander George Mackintosh is still at large. 

Neither of those is going to happen.  Likely Alexander George Mackintosh will have a low-level menial job where he can have minimal interaction with the public.  And he'll be happy.  If he can be happy and contributing to society in even a minimal way, then I will count myself as a success.  I know there will be many who won't see it that way. 

I already see the pity in a lot of eyes when I acknowledge where we are.  People like success stories, triumph against the odds.  Only, if everyone triumphs, then those weren't really the odds in the first place.

I can't spend my time chasing dreams or mourning them.  I have to focus on what is actually happening and how to make the best opportunities out of it. 

Remembrance Day

My thanks to all of those who have sacrificed their health and lives in order to protect others. 

Monday, 10 November 2014

A Success for Toileting

We had our first success with Alex's toileting program.  For the first time, we were actually able to confirm that he did a BM in the toilet (as opposed to having done one earlier which simply dropped in when he sat down). 

Needless to say there was much rejoicing and he earned a special visit to the trampoline park. 

Our behaviour therapist was quick to reassure us that the trampoline visits would be a short term reward.  She understood they took a lot of time and money.  I don't think she gets how desperate we are to have him toilet-trained.  If it means spending $30 every day to take him, I will do that.

Granted, my more logical brain reminds me that we will go broke doing that but the emotional side doesn't care. 

Sunday, 9 November 2014

More Work On Practice Tantrums

We've now done two practice tantrums and I can see why it was recommended not to do them too frequently.  It's hard to work your child up to a point of actual upset (and otherwise they're not learning to control when they have strong emotions).  It goes against every instinct as a parent.

Nathan always gets lots of cuddles when he's done.  And I make sure there's a wide amount of time before he'll have to do anything.

We haven't had any further incidents of hitting reported from school.  We had one incident here, which was promptly given a time-out and loss of screen time. 

I've told Nathan that I don't like doing the practices, that I don't like seeing him upset.  But I am proud that he's learning to control his temper and I know how hard that is.  Hopefully the lesson will be learned quickly and I won't have to do it for long.

Friday, 7 November 2014

Nathan Quote

Nathan has been very proud, showing off his new glasses to everyone.  One of the therapists commented that they made him look older.

Nathan: I look old?

Therapist (looking nervous): Not old-

Nathan (delighted): I'm an old man.  A grumpy old man!  Just like Daddy!

Thursday, 6 November 2014

No Trip for Alex

Alex likes travelling, so when my parents offered to take him with them to Toronto this weekend, we were cautiously optimistic.  He would enjoy the trip and we'd have some time to focus on Nathan.

Unfortunately, it's not going to happen.

Alex has been having a really difficult week.  Enough complaining to qualify for Parliament.  Extremely long time outs.  Whining constantly.  That's three strikes.

Although we could certainly use the break, we have to think long term.  Disney cost us almost three weeks of re-establishing the rules.  A weekend away, especially when he's already being difficult, could be another week or two.  It's not worth it.

This is something which is often overlooked in respite programs.  A break is all and well and good.  It's necessary.  But sometimes the cost is higher than the benefit, which is why parents don't immediately jump all over these programs when they're offered. 

Sometimes it's being unable to find childcare to give you that break.  Sometimes it's knowing that even that small disruption of routine will cost you.

It takes me about two months of regular visits to train someone to the point I can trust them to manage the boys at home without me.  (Longer if there are any excursions, even outside to the backyard.)  That's two months of paying someone to come for several hours at a time, at least once per week.  That's a lot of investment before I get even a minute of actual respite.  So I understand how some parents are just too exhausted to do it.

I'm lucky at this point.  I have two aides I can ask to come and help as well as my parents.  But I know that at some point I will have to start the process over.  Teens and young adults are a high turnover crowd.  And respite is not something that anyone wants to do as their full time job.

Wednesday, 5 November 2014

I Can See Clearly Now

We got a surprise this week at the optometrist: Nathan needs glasses.

He has very mild nearsightedness.  Enough to need glasses for classwork but not for all the time. 

I knew this was coming.  After all, I was so nearsighted I counted as legally blind before I had laser eye surgery.  And Dave has worn glasses since he was 11.  But both of us started losing our eyesight around puberty, so I thought we likely had until then with the boys.

Nathan is quite excited about having glasses (which is a relief because if he hated them, he'd never wear them).  I'm a little nervous, since he's not the poster child for responsibility (and if he was, I'd worry more).  Hopefully his teacher will gently remind him to bring his glasses home at night.

It's made me wonder about Alex's eyes but the optometrist at CHEO has been clear about the difficulties.  He can't tell us which of two images is clearer, let alone sit through the five to ten minute process of minute adjustments to create a prescription.  Unless we see some really big signs of myopia, he'll just have to muddle through.  I take comfort from the fact that he can still read the bus numbers from well beyond my ability to do so.

Tuesday, 4 November 2014

Halloween Photos

Took some doing, but eventually we extracted the photos from the camera.  (And gave me a reminder why I should sit down and label all of the various data cords we have stored in boxes.)

 
 
Alex's Queen Elsa costume came together nicely despite being last minute and store bought.  I got him two blonde wigs and then sewed them together (along with the tiara) so that he had a nice thick braid to pull over his shoulder.
 
We got plenty of comments about his costume.  We took him to his school's Hallowe'en party and a good dozen teachers and staff stopped by to see him.  One of the school staff commented that they thought it was just great how we went for whatever Alex wanted, regardless of social pressure.
 
The attention left me with mixed feelings.  On the one hand: pride, since I think the costume did turn out amazingly well.  But on the other hand, a little unsettled, feeling like an oddity.  But Alex enjoyed it all, which was the point.


Nathan's Emmet costume is the one I'm particularly proud of.  I made it out of craft foam and used multicoloured duct tape to create the designs.  The Piece of Resistance on the back is two Kleenex boxes covered in red foam and I used yellow foam to make the hands.  I think it turned out awesome.

Compare with the original:




 


 

Sunday, 2 November 2014

Technical Difficulty for Hallowe'en Photos

We have some very lovely photos of the boys in their Hallowe'en costumes but I can't find the cable to get them off of the <insert profanity here> camera.

It's late and I'm not feeling great, so I'm going to deal with this tomorrow.

Sorry about the delay.

Thursday, 30 October 2014

First Practice Tantrum and the Start of Toileting

When I first heard of this technique, I thought it was stupid but I'm starting to see the potential.

We had our first practice tantrum with Nathan yesterday.  I explained the rules first:

1) If he feels like he needs to hit, he should grab his pants and count to five before taking a deep breath.
2) For practice, if he does hit, he won't get a time out.
3) If we get through the exercise and he doesn't hit, he earns $ 1.  (I showed him the coin)

Then we did a practice of counting to five and taking a deep breath while he was calm.  He did very well.

Then I had him close his eyes and imagine a situation that upset him.  I guided him, narrating the situation.  I based it on what happened earlier this week, when someone bumped him as he was coming in from recess.  I told him to imagine that he'd been having a lot of fun and was in the middle of something and the bell rang, then people were being loud and standing too close.  And then I gave him a light push to simulate the bumping.

He got very upset but instead of hitting, he started to cry.  I waited a little bit to see if he was going to lash out but then offered him a hug.  I held him until he calmed down and I explained I was proud of him.  Being upset and needing a hug are good ways to deal with being hurt.  Hitting is not.  So he earned his coin.

I don't want to do too many practice sessions in a week.  It's emotionally difficult.  But I'm trying to be more aware when he's upset and praise him for not using his hands or feet.

I expect this technique to take a long time to show results but we've already tried the social story route and immediate consequences route.  It's time to get more creative and since I can't collect antecedent-behavior-consequence data from the school to figure out a direct strategy, this kind of roleplaying is the best option I can think of.

On his brother's side, the therapists have begun recording benchmarks to see how long Alex is comfortable sitting on the toilet.  They're going to start by getting him comfortable on the toilet and then we'll move forward.  It's quite exciting (and worrying) to be at the start of the process.

Tuesday, 28 October 2014

Temper Tantrum At School

Nathan's been having periodic temper flare ups at school.  Yesterday he hit the French teacher with a small whiteboard because he didn't want to put it away.  I suspected something had happened because he came out late and was irritable and yelling.  However, I didn't get the email from the teacher until 8pm, far too late to enact any immediate consequences.

I'm trying to decide what I should do here.  He doesn't have these kinds of outbursts at home, so I can't do any kind of correction here.  I can only try to give him examples of things he should do (the social story approach) or have consequences, assuming I find out in time.

I'm wondering if we're dealing with a transition problem (he's not getting enough warning before the next activity) or if there's something else.  School is stressful for kids at the best of times, so maybe it's just too much by the end of the day.  Most of the incidents seem to be happening later in the day from what I'm hearing.

The teacher clearly doesn't have the time or energy to keep me up to date, so I can't depend on proactive methods from her. 

I'd like to sit down with the teacher and the floating aide and talk about ideas but I'd like to have some ideas before we sit down. 

I'm also wondering if this is something other parents are having to deal with and this is in the normal range of behaviour for seven year olds.  Certainly I've seen that Nathan's friends are still prone to the occasional tantrum.  It doesn't make it acceptable but it would make me feel better.

Monday, 27 October 2014

Gender Roles Conundrum

In September, my kids choose Hallowe'en costumes.  Nathan chose Emmett from the Lego movie.  Alex didn't seem too interested but said yes to a pirate costume.

On Friday, when his therapist asked what he would be for Hallowe'en, Alex told her "Queen Elsa".  I dismissed it, since Alex often will respond to such questions with whatever is in sight, rather than expressing a genuine opinion.

But then on the weekend, we were at a birthday party where one of his teachers was helping out.  And she asked me what Alex was going to be for Hallowe'en.  When I told her "pirate" she told me that he had been saying "Queen Elsa" for several weeks now.

This puts me in a logistical conundrum.  Frozen is still the hottest option out there for young girls and finding a costume would require plenty of legwork.  There's no time to make one myself.

The other challenge (and the elephant in the room) are traditional gender roles.  It is acceptable for a girl to dress as a boy under pretty much any circumstance.  It is moderately acceptable for a boy to dress as a girl for comedy purposes.  In select circumstances, there would be acceptance for a transgender preference.  But a boy dressing as a girl simply because he admires a female character is not one that society understands.

I don't believe this is anything more than Alex admiring Queen Elsa and wanting to partake in some of that feeling.  (Much as I would love to have a Captain Mal or StarLord costume for Comicon next year.) 

Alex doesn't understand or care about society's expectations.  He's not going to recognize disapproval.  Why should I deprive him of something he cares about because other people won't understand?  Particularly when that lack of understanding is not something which will impact him.

If this were Nathan, we would sit down and have a talk about how some people might say mean things or make fun.  I'd try to help him understand and prepare for the consequences  if he wanted to proceed.  But Alex isn't going to get it and frankly, there are already enough odd behaviours to make him the target of blanket disapproval so what's one more?

I don't know if I can pull this off.  But I think I owe it to him to try.

Sunday, 26 October 2014

Trampoline Birthday Party Success

Alex was invited to a trampoline birthday party this weekend and it was an amazing success.

The party was at Xtreme Trampoline.  Most of the kids from Alex's autism class came and they had a great time. 

It was quiet.  Other than the kids at the party, there were only ten or twelve other kids there.  They bounced for an hour (although most lost steam at around 45 minutes).  They had some pizza and cake afterwards.

It was really great to see smiles and enthusiasm without tantrums or panics.  This is how childhood parties are supposed to be.  It was a welcome relief for all the parents.

Friday, 24 October 2014

Homework Challenge

We've been fighting a couple of minor bugs this week but it's played real havoc on Nathan's homework schedule (as did his hiding his homework book on Tuesday).

This weekend, he has to:
- finish his math homework (about 15 minutes)
- read a story for his reading homework (about 25 minutes, if it's familiar)
- answer two questions on the story he read (about 45 minutes each)
- collect materials for a diorama on birthdays (no idea, I'm guessing about an hour)

All due on Monday.

And to make life fun, I have limited time.  Alex has a birthday party on Saturday and, if I'm feeling better, there's a brunch with my girlfriends on Sunday.  Either way, Nathan has his art class on Sunday, too.

Usually I only have one or two tasks left for the weekend by the time we get to this point.  One task a day is very manageable for Nathan.  Two or three is going to be pushing it.  It feels like bad time management, but realistically, I can't predict being sick and forcing Nathan to work when he's sick is not productive.

Thursday, 23 October 2014

Hiding Homework and Tears

On Tuesday, Nathan told me that his teacher had decided not to give them any homework for the week.  I was suspicious over this bit of good news.

Later that night, I got an email from the teacher telling me that Nathan refused to paste his math homework into his homework book and threw it across the room, refusing to take it home.  She told him that if he didn't take his book home, he would lose his first recess today.

Do regular kids have tantrums like this?  Or are they smart enough to simply ditch the homework book on the way home and protest to everyone that they have no idea what happened to it?

Right now, I feel exhausted and unable to come up with any kind of solution on this.  Nathan's bursts of irrational fear come without warning and don't last long enough to really work on.  A week ago, he was afraid the cats were going to eat him and screamed whenever he saw one.  That was one day and I only found out why he was screaming three days after the fact.  No real opportunity to deal with it.

It's like random things come together in his mind and link up, causing anxiety.  There's usually something he's anxious about but the constantly changing form defeats my grasp of basic psychology.  There has to be an underlying pattern or cause, but I can't see it.

I'll figure it out or I'll keep putting out fires.  But it can't be any fun for Nathan (although I suspect he does use it sometimes to get out of demands).

On the way home, (before I knew about the homework), I told Nathan that his babysitter was sick and would have to cancel.  He just burst into tears there on the sidewalk and wouldn't move for five minutes.  He cried like someone who'd been left at the altar by their childhood sweetheart.  He was absolutely inconsolable.

These strong emotions are worrying to me.  They're so overwhelming for him.  But I don't want to teach him to squish down his feelings and pretend he doesn't feel anything.  I also don't want him to be a target for bullies (and big reactions are a bully's delight).

More Post-Shooting Thoughts

First of all, everyone in my family is okay.  We all got home safe and sound.

But not everyone's family was so lucky.  My thoughts and wishes go out to the family of Corporal Nathan Cirillo, who was shot as he stood guard over the tomb of the unknown soldier.

The guard at the tomb was put in a few years ago when drunken idiots decided to urinate on the tomb.  To prevent further disrespect, a guard was assigned around Remembrance Day and Hallowe'en. 

The papers are identifying the shooter as a radicalized Islamic convert.  Personally, I have a problem assigning a religious identification to people who misuse doctrine as an excuse to justify their own violent leanings.  So my thoughts also go out to all Muslims who are once again being tainted by the actions of a few people who completely missed the point of faith.

Yesterday afternoon I did a lot of thinking about what I should tell my children about the shootings.  People need to talk to make sense of what happened.  We need to frame things in the context of a story and to do that, we tell it to each other over and over again.  So they will likely overhear things in the next few days.  People will even likely talk to them directly.

Alex will not care or recognize what happened.  He has a great deal of difficulty understanding the concept of the past, especially when it comes to things which didn't happen to him directly.  However, he probably will pick up on other people's upset and so I'll be watching him for signs that he's become unsettled.

Nathan is too young to understand directly but since he may become aware, I've tried my best to explain in simple terms.  I've told him that the adults may be sad today because someone got hurt by a bad guy yesterday.  But the police stopped the bad guy and he's not going to hurt anyone else ever again.  I've told him that people may be saying all sorts of things today because they're sad or afraid.  Some of it may be true but some of it will probably be wrong.  So he should come and talk to me if someone says something which makes him feel afraid or upset.

We had my father over for dinner last night.  He works downtown at the Department of National Defence, so things were very stressful for him yesterday.  My mother is currently away and I think he needed to be with family for awhile.  To get back in touch with the everyday world again and put yesterday in its proper context of a horrible exception.

It will likely be weeks or months before we understand just who and what was involved in this awful plan.  There will be much speculation and pointing of fingers, attempts to use it for political and personal profit, fear will be generated and we're all going to be much more nervous around loud bangs for awhile.

But in the end, I don't think we should lose sight of the fact that this was not a typical experience, that the shooter is not representative of any of the groups he claimed and that someone lost their life in what should have been a post of honour. 

Tonight I will be lighting a candle to honour the sacrifice of Corporal Cirillo.  He should not have died and it is a tragedy.  But it would be a worse tragedy if it spurred more hatred and violence instead of bringing us all together in mutual mourning.

Wednesday, 22 October 2014

Shootings and Lockdown

About an hour ago, I learned that there had been a series of shootings downtown.  As a result, all schools throughout the city are in one version or another of a lockdown.  No student is allowed to leave the school.

I only learned about this because Alex was due to come home at lunchtime and when he didn't show up, I got concerned.  I thought there was supposed to be some kind of phone tree/robo dialler activated when schools got put on lockdown (especially since lockdowns are often followed by 'please come pick your kids up right now' calls).

I don't have a problem with the lockdown policy.  It's the safest way to keep everyone contained and out of the way while the police concentrate on making sure the bad guys are caught.  Life doesn't unfold as neatly as a cop drama and the fewer distractions (and potential targets) the better.  That's the intellectual and practical side of me.

On a gut level, about 500 000 years of maternal instinct are telling me to visually/tactilely confirm that my kids are safe and under my protection.  But if parents were allowed to come get their kids, there would be mass chaos and it would be a far too tempting target.  This is why humans have brains as well as instincts, so that we can make smart decisions instead of relying solely on our gut.

Alex is perfectly happy with the situation.  No therapy and he gets to play with his friends at school.  Fair deal.  I don't know how much Nathan knows, but of the two, he's more likely to be anxious.  I'll have to spend some time reassuring him that this is a grownup problem which he doesn't need to worry about.

Right now, my biggest worry (since I don't live downtown) is whether or not the lockdown will be resolved by the end of the school day and whether or not they will be able to provide transport for Alex or if I'll have to come and get him.

Tuesday, 21 October 2014

Chocolate and Lego Shortage

There are days when even the five minutes of news I listen to each day is too depressing.  Today's feature?  A hit and run on two soldiers, a house fire and expected shortages for both Lego and chocolate this Christmas.

Okay, granted, not having plastic blocks or sugary treats is not the worst thing which can happen.  It probably won't even be the worst thing which happens between now and Christmas.

Lego, I'm not horribly surprised.  The Lego movie caught manufacturers by surprise and sales spiked.  The fact that we now have a production-sales gap was predictable.  Annoying, but predictable.

Chocolate is apparently the latest casualty of the Ebola outbreak since a significant proportion of the world's cocoa crop is on the Ivory Coast of Africa and they've closed their borders to prevent Ebola from coming in from their neighbours.  Of course, that also means there are no migrant workers coming in to pick the crop.

It's sad.  It also means I have to hustle my butt out and pick up the boys' advent calendars before Hallowe'en, which is also sad and wrong.  They both want Lego calendars and I'm willing to bet so do a lot of other people.

Monday, 20 October 2014

Elevator Annoyance

Alex likes elevators.  We all know this.

But lately he's been  humming the tones from various elevators (and sadly, I can recognize which ones are which by the pitch).  At first, not such a big deal, but now he's doing it constantly.

The school sent home a note asking if we could discourage it as it is interfering with his work and with other students in the class.  I was already getting to the point where the constant hmmm-mmmm in various tones was driving me nuts.  (I'm the opposite of the boys, I can't tune out my aural feed no matter what.  So repetitive or unpleasant sounds will quickly frustrate me.)

The question is: how do we discourage it?  Especially since it's probably an unconscious vocal manifestation of what's going on in his head.  The only answer I can think of is to tell him "no elevator noises" for a particular activity and then remind him to be quiet.  I'm not sure how effective it will be as a strategy, but it's got a chance of breaking it if the noises have just become habit.

With a regular ten year old making an annoying repetitive sound, you could ask him to stop, you could explain when and where such noises are appropriate, you could offer a reward or punishment.  The strategies may not work but where one fails, there are other options.

When it comes to self-reinforcing behaviours like shredding, making the cats hiss or humming elevator tunes, the behaviour itself makes him feel good enough that it doesn't really matter what the external consquences or expectations are.  Breaking those behaviours is really tricky.  From the list, as you can guess, I haven't had a lot of success.

Here's hoping this one works.

Sunday, 19 October 2014

Griding Through the Days

As much as I love Hallowe'en, I really don't like this time of year.  The weather is miserable and the sun vanishes far too quickly.

I find this is the time of year I get discouraged and frustrated and have more thoughts about how things are never going to improve.

I'm sure a lot of people are in the same situation.  Everyone I know is complaining about feeling tired and drained of energy right now.  I think it's good to share these kinds of feelings so that no one has to feel isolated and alone on top of fighting exhaustion and depression.

Thursday, 16 October 2014

Cooperation At the Dentist

Alex and the dentist are usually open enemies (at least on Alex's side).  He may tolerate it for the sake of the elevator but he'll resist as much as he thinks he can get away with.  Initially, we had to put him under general anesthesia for his cleanings and then we moved up to a full body restraint board.

Yesterday, we strapped him into the restraints and he was actually cooperative.  He didn't fight to wriggle out of the restraints.  He opened his mouth for ten seconds at a time (a personal best).  He asked politely to get down rather than trying to throw himself off the exam chair.  (I had to tell him no but told him I was proud he asked.)

I don't think it's a coincidence that he's doing better and we've been doing the behavioural programming.  Hopefully we can keep it up.

Wednesday, 15 October 2014

Finding Time for Me

This fall has felt like a never-ending slew of tasks, work and managing Alex and Nathan.  I haven't even been able to get started on their Hallowe'en costumes as yet.  I'm trying to balance the editing deadline for my novel, back to school communications and organization, my regular workload and deal with vacation stuff, regular paperwork and a dozen other things.

I'm wiped out.

We won a single night Refresh stay at a local hotel and I think I'm going to go out of pocket for a second night.  I can't really afford it but at this point, I don't think I can afford not to.

Having an overnight at the hotel is nice.  For parents whose kids don't sleep, I'm sure it's a lifesaver.  But my kids sleep fairly well, though I do have to get up fairly frequently to change Alex after he's wet the bed.  For me, I don't need a night off, I need a day off.  Booking two nights is the only way to get that.

A day off without having to deal with tantrums, sulks, homework, time management, work or housework?  Now that's a vacation.

Tuesday, 14 October 2014

New Direction from Behavioural Therapist

Since we came back from Disney, we've been having a hard time with Alex.  He's been much more aggressive than he was before we left.  It was expected (although we always hope this time will be different) since he almost always has a spate of difficult behaviour after something enjoyable.  For a walk, it might be an hour or so.  For a weekend, the rest of the week.  For a week away on vacation, often two to three weeks.

Our behaviour therapist pointed out that, from Alex's perspective, all the rules change during these activities.  Since he lives in a world where things are constantly changing for no reason, he doesn't connect special activities to special rules.  Instead, as he sees it, all the rules are up for renegotiation and aggression has always been a favoured tactic for him to renegotiate.

It's not a malicious thing.  For him, aggression is a tool just like communication, except far more reliable.  Without the empathy to understand that he is hurting others or the social understanding to realize how negatively this impacts his relationships, it must seem effective.

The therapist said we had to make sure we were absolutely 100% consistent to help him to understand that the old rules were still in place.  Any change, no matter how small, would only reinforce the idea that everything was up for renegotiation.

It's difficult and exhausting but I'm doing my best to be 100% consistent.

Monday, 13 October 2014

Citizen Article on "Overdiagnosed" Autism

I won't pretend to be unbiased in this case.  This article made me furious.

The article speaks to Enrico Gnaulati, author of "Back to Normal: Why Ordinary Childhood Behavior is Mistaken for ADHD, Bipolar Disorder and Autism Spectrum Disorder".  This self-righteous crusader (who does not appear to have any experience working with children with autism, ADHD or bipolar disorder) claims that parents and doctors are just too anxious and pathologizing normal kids.

Well, Dr. Gnaulati, I call bullshit on your theory.

He claims that 30 % of children diagnosed with autism will no longer qualify for diagnosis in later life.  I couldn't find the North Carolina study he claims to cite (mainly because North Carolina is currently involved in hundreds of autism research studies).  The only time I've seen "recovery" numbers that high is when all the children involved were undergoing intensive early intervention.

I've been the parent wondering if my child's behaviour was typical and being dismissed as over-anxious.  Even after Alex was diagnosed, my family doctor (who had refused to refer us for testing) told us that he "didn't believe in autism as a diagnosis because North American parents are just too uptight."

Like the anti-vaxxer crusade, this is ideology masked as science which has the potential to harm a large number of families.  No parent wants to believe their child has autism.  A parent reading this might decide to wait and see if their child "grows out of it" rather than seeking help.  And if that child does have autism, then the best years to help them will be gone.

I assume if you're reading my blog, that I'm somewhat preaching to the choir, but please, encourage people to have proper professional evaluations rather than hoping it will go away if they ignore it.