Thursday 31 March 2016

Birthday Season Coming Up

We have begun the countdown to birthday season.  With both boys having their birthday a week apart in May, it makes planning birthday celebrations a burst activity.

This year I find myself wondering what to do with Alex.  He doesn't like the social pressure of parties, so inviting his classmates or the extended family to come visit is stressful, not fun.  Last year, I had Ana and Elsa come visit him for a birthday surprise, which he quite enjoyed but I'm not sure if he would like it again this year.  (The Frozen phase seems to have waned somewhat.)

I want to do something special for him.  Nathan is getting a trampoline party with his friends and there will be a family birthday party for both of them with the extended family in attendance.  But I'd like something for just Alex.

His birthday is on a weekday, which limits at least some of the options.  Dave and I have talked about giving him an extra long bus ride, perhaps one that intersects with the O-train, but that would be a late night.  We could take him to CHEO and let him ride his favourite elevators.  If we wait for the weekend, we could see about taking him to a movie (and let him ride the elevators at the cinema).

I'm sure plenty of people will be appalled at this list.  It doesn't sound very fun from our point of view.  But these are things which Alex loves and usually he has to earn them with a lot of hard work.  Giving them to him freely would be a special day.

Wednesday 30 March 2016

Summer Camp Applications

Having spent over an hour yesterday filling out and completing some rather thick application forms, we've begun the process of getting Alex signed up for summer camps.  I have no idea when we'll hear whether or not we've been successful but at least the applications are in.

This is one of the frustrating sides of dealing with autism bureaucracy: the lack of information.  With Nathan, I can use the City of Ottawa camps.  I can search for specific camps.  I can look at the options several weeks before registration opens.  The opening date is clearly marked on the website and I get confirmation within 24 hours of registration.  

I had been given recommendations for several camps for Alex, which is good because Googling "special needs camps Ottawa" or "autism camps Ottawa" led to less than useful results.  (None of the recommendations came up within the first 5 pages.)  Then I started checking the recommended camps' websites, only to discover no information about the 2016 camps.  Some had notes about the 2015 camps, but nothing useful like dates or costs.  

After a few weeks of site trolling, I called to get more information.  For one, I was told that registration would open sometime in April but that I could submit a registration form in advance for consideration.  (The form was on the site under Residential Programs but I was assured it also included summer day camps.)  For another, I was told that I needed to sign up for a $30 annual membership in order to qualify to apply.  The third has yet to return my call.

So now comes the waiting and wondering.  Did I make a mistake on the application which will disqualify me?  (Has happened before.)  What are the criteria for choosing which applications are granted?  What are my chances of being accepted?  Should I apply to multiple camps for the same weeks to increase Alex's chances?  It's frustrating to have such limited options and little to no information about them.

I just have to wait and see and recognize that the answers will probably come late enough to make it difficult to set up any other kind of services.  Sometimes I feel as though I'm being held hostage by bureaucracy: they hold all the power and I don't even have the basic information to protect myself.

Tuesday 29 March 2016

How To Teach Empathy

This is one I've been thinking a lot about lately.  And for the hopeful, I'll let you know right now that I don't have an answer.

Thinking about things from someone else's perspective is a challenge.  For someone with autism, it can be even more so.  The inability to recognize a partner's point of view is one of the biggest reasons why autism-neurotypical marraiges fail (probably a significant factor is almost all break-ups, if we're honest).  So I've worked very hard to try and teach both boys to think about how their actions affect others.

Thus far, not feeling a great success on that point.

Alex has limited understanding of his own feelings, which makes teaching him to recognize those feelings in others even harder.  Nathan gets very intently caught up in how he feels (which is developmentally typical for his age) and it's too much to try and remember how what he's doing affects others.

I know that teaching this skill is going to be more like chipping through a rock with a spoon than carving through soft wood with a knife.  Progress will be minimal and require a disproportionate amount of effort.

I've heard some people argue that those with autism shouldn't be forced to adapt to neurotypical expectations.  Instead, neurotypical people should understand that these behaviours are not meant to be offensive and should stop taking offense.  There's a logic in that.  An autistic husband who doesn't see the need to tell his wife that he's going out after work isn't going through the same mental process as someone who is deliberately trying to hide his activities.  But the wife's frustration and pain is real, as well, and to me, marriage means taking the other person's feelings into account.  It's a partnership and a unilateral partnership is impossible.

So this would be my argument: While I can understand the frustration at having to adapt to an essentially alien way of thinking, those on the spectrum must understand that interacting with society has always involved compromise between all parties.  Yes, there does need to be some adaptation on the neurotypical side, acknowledging that some things such as eye contact are difficult for those on the spectrum and can interfere with their ability to follow conversations (for example).  However, those on the spectrum must also understand that the feelings created by their actions are real and cannot be dismissed by logic and rational thought.  No one can tell another person that how they feel is not valid without making the situation worse.  Thus, if a person wishes or is required to interact with others, they must make an effort not to make that interaction negative.  It goes both ways.

Hopefully, with many more years of patient and determined chipping, I can help my boys to find a smoother path through society.

Monday 28 March 2016

Monday morning

A productive weekend.  Got our taxes done.  Worked on finally staining our replacement cupboard door for the kitchen.  Replaced a drain in our sink.  Took the kids bowling on Friday.  Offered to take Nathan swimming but he refused.  Had a family dinner on Friday and another on Sunday.  Went to the gym.  

Now it's back to work with the kids enjoying a final day off.

I'm having a rough time of late, feeling exhausted and like I'm not getting anything done.  So I've listed it out and having taken a look, I understand the exhaustion and can refute the not getting things done.

Thursday 24 March 2016

All Dressed Up And Nowhere To Go

Yesterday, we were supposed to go to Parliament Hill for a reception to meet MPs and talk about the challenges facing families with autism.  The reception was cancelled due to the unexpected death of Alberta MP, Jim Hillyer.  (A good reason to cancel an event if ever there was one.)

However, the announcement came after the boys were at school, which meant it was too late to change their expectations.  So I went to pick them up as expected and anticipated a rocky rest of the day with the change in plans.  My kids do fairly well with changes in plan, but it's still a stress for them and means we are more likely to get tantrums and other disruptions for the next day or two, especially since we already have another schedule disruption on the horizon with the long weekend.

For the last few days, I've been thinking about what I would have said.  What would I have talked about?  (I've learned to do this in advance because otherwise my life seems normal to me and I can't think of anything.)

I could have talked about carrying keys to the interior of my house because all of our interior doors, except the bathrooms, have keyed locks to allow us to control Alex's access to them.

I could have talked about needing to take separate family vacations, one child at a time, or needing to hire help to come with us.

I could have talked about the relentless grind of teaching skills in miniscule steps that other kids just pick up.

I could have talked about the debt we've accumulated in pursuing therapy options, or needing to quit my full-time job to manage them.

I could have talked about the fears that we have for the future and the difficulty finding help as the children get older.

I could have talked about the dismissiveness we face when we try to explain Alex and Nathan's conditions to those who don't have personal experience with autism.

I find myself wondering how much I would have gotten to explain and how much they would have been willing to listen.  My experience is that most people listen for a little bit and then start problem-solving or wanting to hear about solutions.  They want an inspiring story, not the truth.

And the truth is that we are not an inspiring story.  If this was a movie, we would still be in the "hard work" montage.  (We've all seen it, the clips of someone training for the big fight or big sporting event, or working hard on a dull and repetitive task in fast forward.)  This montage has already lasted 10 years and will probably never truly end.  There's no "happy ending" in sight, only more work and new challenges as we get the old ones under control.  That's the part that I think people have trouble understanding.  We are programmed to respond to stories, which either have a happy or a tragic ending.  We have difficulty with one which is simply continuing.  

Tuesday 22 March 2016

Recognizing the Limits... for Adults

I've talked a lot about the challenge of recognizing the limits of my kids, but it's also important for the adults to recognize their own limits.

Yesterday, Nathan and Dave had an unpleasant finish to the weekly Cub meeting.  It was the Cub Car race day and Nathan was very excited about the car which he and his father and grandfather had built.  He asked his dad to accompany him to the races.

The meeting was long and full of excited, noisy kids, which ended up taking a toll on both Nathan and Dave.  Nathan got upset when his car failed to win any of the races (though he came in a respectable 2nd most of the time).  Dave, already stressed and having a hard time, didn't have the mental resources to deal with Nathan's upset and things quickly escalated.

I managed to get them both calmed down once they got home, but after, I sat down with Dave to talk about avoiding a repetition.  He'd told me that he'd realized he was having trouble early on.  I suggested that in future, he call me and I would switch places with him so that Nathan could still have family there to root him on.

The boys understand that their father has trouble with crowds and noise, just like they do.  One of the things I've been working on with them is building up their tolerance, but also trying to get them to understand the early warning signs of overload, so they can ask for a break or take steps.

Because Dave was not diagnosed with autism as a child, the message which he received from society as a whole was to stop being difficult and tough it out.  When I hear of parents who don't want to get their child diagnosed or who won't tell a child about their diagnosis, I think of Dave, struggling and not understanding why these things are so much harder for him than everyone else.  It's discouraging and demoralizing in the best of circumstances.

I can understand not wanting a child to be ostracized or labeled, but if the challenges are there, simply refusing to acknowledge them is one of the most harmful and isolating choices possible.  Imagine a child with a missing foot being constantly pushed to run or walk faster and farther.  It would be horribly cruel, and pushing someone with autism to be social without giving them the tools to cope is just as cruel.

Monday 21 March 2016

Midnight Screams and High Anxiety

Over the last few nights, Nathan has woken up on more than one occasion, screaming from a nightmare.  It's a simple procedure to deal with, I go to him, ask him what scared him, check (because I always hated when my parents told me there was nothing wrong without even looking ... like they never even saw a horror movie), show him everything is fine, hold him for a bit and then get him settled back to sleep.  When asked in the morning, I usually discover he didn't even wake up enough to register that something had happened.

I, unfortunately, do not have that luxury.  

Aside from the sleep disruptions, I'm concerned that Nathan's anxiety levels have gone up a lot over the last few months.  We've had more tantrums (which result in him refusing to leave the house or wanting to return home), more refusing to leave our sides, more deliberate provoking of Alex.  All of these are signs of anxiety for Nathan, but I can't figure out what's triggering it.

Alex has been doing very well.  He's rarely aggressive these days.  Even under provocation, he's more likely to cry or shout than hit or kick.  

Is this a backlash to Nathan wanting to be more independent?  Something happening at school?  Disruption in routine or expectations?  He's been asking a lot about the service dog, and we'd been preparing him that it might come this spring, then we had to prepare him that it wasn't coming.  Maybe it was too much.

Whatever it is, it's certainly not going away on its own.  Which means I'm going to have to figure out what the root of the situation is and figure out how to deal with it.

Friday 18 March 2016

Nathan's Trip to Toronto (with Pictures)

We arrived late on Friday night, so we went to bed fairly promptly.  Mr. Nathan was quite excited about the folding cot.

He was even more excited to discover that Uncle Varun had a Lego Millennium Falcon.  Nathan has been wanting to play with one of those for quite awhile.  They dug out all the pieces and the instructions and got started.

We interrupted the Lego build to go to the Toronto Zoo.  Nathan wanted to begin with a ride on the carousel, which was fine by us.

Then we went to see the pandas.  The line for the babies was over two hours, so we were satisfied to see the adults.

Nathan found a camel to ride.

And joined the anti-poaching patrol.

We finished with a look at the globe outside the Zoo to see where all the different animals we'd seen live in the wild.

On Saturday, we ventured out on the streetcars to visit the Royal Ontario Museum.

Nathan got his knight on. 

More work on the Millennium Falcon.

On Sunday, we went to the Legoland Discovery Centre and saw their model of Toronto.

I have to admit that it wasn't as impressive as the Legoland in Florida but the cityscape was still great to look at.

Nathan had fun building an earthquake-proof tower.  (The green pad shakes, testing the kids' structures.)

And he finished the Millennium Falcon.  He did most of the work himself, with only a bit of help from the adults.

On our last day, we visited the Ripley's Aquarium.  Nathan and I were both impressed by this giant sawfish.

Shark selfie!

Nathan crawled through the shark tunnel.

And visited his Finding Nemo friends.

And got up close and personal with these black-tipped reef sharks.

He had a great time, but he was definitely ready to head home by the end of it.

Wednesday 16 March 2016

Big Success for Alex

Alex has earned himself a second ride to Montreal on the train.  And most impressively, he did a BM in the toilet on a non-school day.  We've never had success on a day where he wasn't at school before, so this is another big step in the right direction.

Dave saw Alex beginning to go and suggested that he go and sit on the potty.  A few minutes later, Alex produced and earned his final letter for Montreal.  (Every time he has a success, he earned a letter and when he spells the required word, he gets the trip.)

A great way to start March Break.

Tomorrow I'm going to try and get some pictures up from the trip which Nathan and I took to Toronto.

Friday 11 March 2016

Review of Zootopia Fieldtrip at Landmark (No Spoilers)

This week, Alex's class had a field trip for a special showing of Zootopia at the Landmark Cinemas in Kanata.

The movie was great, but that's not what I want to talk about.  Instead, I'm focusing on the how the theatre handled things and let me be up front: I'm not impressed.

I am pleased that they were willing to do a sensory friendly showing.  The showing was just for the autism classes at Alex's school and another local school, so things could be adjusted for them.

However, between the theory and the execution, there were problems.

To begin with, they didn't open the theatre doors until 10 minutes after the movie was due to start.  This created some behavioural challenges with the kids as the expected schedule changed.  We could see people moving around in the theatre but no one came to explain to us what was going on and no one would answer their phone as we called, trying to find out the circumstances of the delay so that we could prep the kids.

As a consequence of the delayed start, Alex's class had to leave the movie before it was finished (we got most of the way to the end, so I think we only missed the post-happy ending joke but we still had to leave as the movie was playing).  They needed to catch a specific bus to get back to school and as it only goes every half hour through the day, they couldn't wait for the next one.

Also, the theatre staff were clearly unhappy at needing to be there and were ignoring us for the most part.  Alex's teacher waited ten minutes to hand over the cheque for admission while the staff member did something on their computer.  There wasn't a word of explanation or even a "We're happy you guys came out here" or anything.  Not even a "Thank you" when the cheque was handed over or an acknowledgement that the transaction was done.

I had a similar issue with Landmark when we held Nathan's birthday party there last year.  Although they were quite happy to take my money and make the booking, they were not happy at having to provide the service and made it quite clear that we were unwelcome.

So while I am grateful for the idea, the practice fell far short of meeting even the basics of civility.

Thursday 10 March 2016

3 Toileting Successes In A Row

We are very proud to announce that Mr. Alex Mackintosh has succeeded in using the toilet for BMs for 3 days in a row.

Before this, Alex had never managed two days in succession or more than two days in a given week, so this is a big shift.  

We're going to see the behavioural specialist today and I suspect we're going to get a gold star.

Wednesday 9 March 2016

Next Window Please

I've been trying to find a day program for Alex to attend this summer since this will be his first summer without a regular tutor or a regular therapy program.  I've gotten some recommendations but it appears that most of them don't have their 2016 information up yet.

It got me thinking about how frustrating it is finding help.  Whenever we've been looking for assistance, we've almost never been able to just get something set up.  It's usually weeks and sometimes months of trying to get in touch with various people and organizations, often to be told: not us, try somewhere else.

I sometimes have to be the person saying that in my work and it always bothers me.  I've got a list of alternate resources and I try to give the person something but I know how it feels to find yet another dead end in the search for help.

Things are improving.  The Ontario Resource Kit at least has a number of contacts all in one place.  But I think parents are still mostly blazing their own trails, working from maps with more guesswork than a pre-Columbus map of the Atlantic ocean: Here there be services.

Tuesday 8 March 2016

Alex's Trip to Montreal

Alex finally earned his trip to Montreal and he had a great time.

He got to ride the escalators.

And the train.

Visited a toy store.

Rode on the subway.

More escalators.

And back home on the train with a new bus toy.  A very good day.

Hopefully the success will encourage him to try harder to earn it again faster.  Fingers crossed.

Friday 4 March 2016

Maybe Bigger Isn't Better

Alex has made some great progress for toileting, but we've been looking for a way to move it up to the next level.  Our behavioural specialist suggested having a really big reward for Alex to earn with multiple successes.  So for the last six weeks, he's been working towards earning a train trip to Montreal.  

Unfortunately, it doesn't look like the big reward is having the desired success.  Statistically, Alex is having fewer successes than he did when we just had the one reward for a successful toileting.  Before, he was averaging two per week.  Now he's had 5 successes in the last six weeks.

We meet with the specialist next week to go over his progress.  Perhaps this is a bump which is to be expected.  Or maybe it's a sign of performance anxiety.  Or maybe he doesn't really want to go to Montreal (which is weird because he was asking for it constantly, which is why we picked it in the first place).

It's making me nervous about the upcoming summer.  Right now, we've only had toileting success on school days.  I don't know if that's something we can duplicate with day camps.

There's still almost four months to go, so hopefully we'll be able to get another breakthrough.  And if not, I just have to keep reminding myself that I knew this was going to be a long process.

Thursday 3 March 2016

Cranky Kids and Cranky Parents

Perhaps this post will make me a hypocrite after yesterday's post, but I'm feeling the need for a break.  (Actually, saying I need a break isn't the same as the "autism is a nightmare from which parents will do anything, including murder, to escape ... so I can let it stand.)

The kids have been cranky lately.  Lots of whining, lots of tantrums, lots of regressions of things we should have under control.  Yesterday, Alex bolted from his classroom and needed to go to the Quiet Room after he threw an aggressive tantrum at school, breaking a three month record of no aggression.  Nathan has been sullen, trying to hide his homework and resisting doing his chores.

Part of the problem is that Dave and I are also cranky.  It all feeds together into a vicious cycle.  The kids are frustrating, we have less patience to deal with them and so they become more frustrating, etc., etc.

This is why I'm a big advocate for taking kid-free breaks for special needs parents.  (For regular parents, too.  All parenting is tough and tedious, if you're dedicated to doing what your kids need.)  Whatever length of time you need to recharge.  It's why Dave and I have a dedicated movie night once a month where we go out to the theatre and why we've signed up for the Refresh Restart program which has regular draws to win a free overnight stay at a hotel.

It's been awhile since we got away and I'm feeling it's due for another mini-vacation.  Right now, we can't afford a hotel stay, but maybe I'll see about having the grandparents take the boys for a weekend sometime in the near future.  

Wednesday 2 March 2016

TV Depictions of Autism (Spoiler for Blacklist)

Dave and I are terribly behind on our PVRed shows, so those who watch live TV probably saw this a few weeks ago.  The Blacklist featured a woman who "kidnapped" kids with special needs (their parents paid her to make it appear that the children died) and then when they reached puberty, she killed them.  Her reasoning was that they needed to remain innocent and if they were allowed to grow up, then they would have horrible, miserable lives and it was thus a mercy to prevent that.

Some of the kids were blind, some were deaf, and according to a brief snippet of dialogue, about half had autism.

This is the third show I've seen recently which featured parents paying someone to get rid of their autistic child.  Criminal Minds and Law and Order: SVU also did shows where parents couldn't cope, so they paid someone to take away their child.

Now, I'm certainly not going to pretend that raising a child with autism is easy.  I won't even pretend not to have doubts about what kind of quality of life is possible.  But I am darn well objecting to a portrayal of autism as the equivalent of a worse-than-death sentence.

Even House had an episode where a severely autistic child was deathly ill and someone commented that the parents didn't look happy when he was cured.  The response was basically that they didn't have anything to look forward to, their life sentence was just continuing.  

Parents do have difficulty coping, particularly since there are very few support options.  It can be morale- and spirit-breaking work.  It's exhausting and endless, and that's if you're doing it right.  Maybe these shows are trying to raise some support and awareness for the challenges that families go through.  Or maybe they're just trying to cash in on some sensationalism and autism is a trendy topic right now.

I will always object to anyone who classifies my children as doomed or as a nightmare which needs to be escaped from.  Perhaps it's just an inherent mama-bear instinct as I can't deny any of the particulars.  But for me, my emotional math ends up at quite a different sum than theirs.

Tuesday 1 March 2016

No Service Dog This Spring

We just got a notice from National Service Dogs that they're changing their protocol.  Instead of two weeks notice, families will be given 8 weeks notice if they will be invited to a training session.  They also mentioned that the families for the spring training have been notified.  Since we didn't get a notice, then we must not be up for a dog.

The news hit me surprisingly hard.  Despite my attempts to be cool and zen about it, I must have gotten my hopes up more than I'd realized.  

It's been two years since our application was approved.  Two years of waiting and fundraising and feeling a little like a fish out of water since we can't participate the way families closer to the actual NSD headquarters can.  I've wondered if we've become a bit "out of sight, out of mind" for the planners (even though they've stressed over and over again that they will match the best possible dog to the the family, which may mean longer waits for some).

Maybe I'm just rolling on a bit of a depression from the bad news.  Maybe it's my inherent difficulty with long-term uncertainty (easier to tell myself it's not happening than to be constantly anticipating and disappointed).  NSD is a good group and they seem to genuinely care about both the families and the dogs.  Maybe we'll be lucky and get called up in the fall.

Meanwhile, I resign myself to at least another 6 months of waiting and I'll try not to get my hopes up as the fall session draws nearer.