Friday, 30 October 2015

Screentime Sanity

Screentime privileges are a constant source of tension in our house.  They are the biggest source of tantrums, demands and aggression.  I'm starting to have more sympathy for my parents and their occasional decisions to eliminate television entirely.

Recently, we've got to a limited access model.  Each child gets a predetermined number of 30 minute slots per day.  On a school day, one before school, one after school and one after supper.  On weekends, an additional one in midafternoon.  Our hope was to stop the frequent "I don't want to go anywhere because I'd rather play iPad" tantrums.  Thus far, not entirely successful.

The slots have to be "earned" by doing chores or other activities (like homework).  This is another source of tension, particularly for Nathan.  He often spends his pre-screen time playing and then gets very upset when it arrives and he hasn't "earned" it.  We've tried giving him warnings and prompts but he just doesn't have the impulse control to regulate himself.

Alex earns his by following instructions without complaining.  He's improved a lot here but it's still a challenge.  He gets two warnings before losing it.  We have little cards with Elsa from Frozen on them which say "Remember to listen".  If Elsa covers screentime, no screentime.

Lately we've had an additional challenge.  Nathan is so obsessed about his screentime that he's refusing to leave to visit the bathroom if he needs to.  So we had to revoke his screentime for 3 days to remind him that bathroom takes priority over screentime.

I know the regulations only make screentime more prized, the forbidden fruit.  But it devolves into total chaos if we allow unlimited time.  We get screaming tantrums which can last over an hour because we've dared to interrupt six hours of watching YouTube videos to serve supper.  I really don't see any way around this.  Kids don't have good impulse control (that's why they're kids) and television, iPad and computers are all designed to be powerful lures.  I can't really expect the boys to self-regulate and I'm reluctant to get rid of the screentime entirely when it is a powerful motivator for their behaviour.

I guess it means I just have to resign myself to tantrums and challenges.

Thursday, 29 October 2015

Holland vs Italy

Yesterday, as I was searching for Emily Perl Kingsley's Welcome to Holland essay, I found this reply from a parent who hates the analogy.

Kingsley's essay is about how a parents' expectations have to change when their child is diagnosed with special needs, like going to Holland instead of Italy.  Parents have hoped and prepared for Italy and ended up in Holland, which has its nice points but isn't the same as where everyone else goes.

The counterargument in the reply is that no one's expectations of parenthood ever get fulfilled.  There are always wrenches in the process or tragedies waiting to strike.  But the main source of frustration seems to be that the Holland essay is used as an inspirational piece, a "hey, your life is okay, you're just in Holland instead of Italy".

I can understand that frustration.  Personally, I dislike inspirational stories, especially when relayed by those who don't really have a grasp on what I'm dealing with (Random people in the street, looking at you).  The implication always seems to be "these parents kept trying and managed to fix their kid, why aren't you making that effort?".  It also implies that I should be desperate enough to take the parenting advice of the cashier at Farm Boy.

I recognize that the intent is kind.  They want to share something that they think might help, they want to spread a little sunshine, they're excited to have something to offer.  But in the end, it is all about them and what they want, not about what is actually helpful to families with special needs.

Going back to the Holland analogy, one can certainly argue that reality and expectations are different for everyone and autism isn't the only possible twist in the road.  But I would argue that having a child with special needs is significantly different from a bookish parent discovering their child has an affinity for sports.  This is why I emphasize that we're talking about different countries when I use the analogy.  It's not about different expectations, it's about needing radically different tools and teaching processes.

I intend to keep using the analogy.  I've found it helpful for illustrating the reality of a diagnosis for newly diagnosed families.  As devastating as it can be, it is also the moment when families finally start to get the help they need.  Getting around Autismland (since Holland may be starting to get a complex about this continuing analogy) is possible once you have the right maps and language.  

Wednesday, 28 October 2015

Finding Your Footing

One of the most common questions I get asked is how long does it take until parenting a child with autism makes sense?

With autism, a lot of traditional parenting strategies go out the window.  "Use your words" is no good for a non-verbal or limited communication child, the "time out" can be a reward for a child who prefers not to interact with others and tantrums can sometimes last for days, making "wait it out" a less than effective strategy.

Before a child is diagnosed, most parents are combing through the Internet, books and magazines, desperate for anything which can help them.  Yet somehow, the strategies which are touted as "fool-proof" either don't work or make things worse.  Parents doubt themselves and feel helpless and hopeless.  They don't realize they're reading from the wrong manuals.

Once a parent has the right manuals, things begin to make sense very quickly.  Something as simple as a visual schedule can make a tantrum-inducing routine suddenly flow smoothly.  Knowing that a child cannot tolerate inconsistency allows parents to prepare for special occasions.  Using Picture Exchange Communication can allow a non-verbal child to finally ask for the milk rather than a frustrating game of guess-the-charade.

It's not instant and there is still a disproportionately high amount of work to be done, but it happens more quickly than a parent can imagine when they're in the pre-diagnosis stage.  I usually tell parents that when they look up 6 months from now and compare where they are with where they were, they'll be amazed how far they've come.  Knowing what we're dealing with makes all the difference in the world.

Emily Perl Kingsley wrote an analogy comparing having a child with autism to landing in Holland after boarding a plane to Italy.  It's a good metaphor for the experience.

No one in their right mind would expect anyone to navigate Holland using Italian language books and maps.  It would be frustrating and demoralizing.  The tourist would begin to feel stupid and blame themselves.

But if you give that same tourist a Dutch phrase guide and a map of Amsterdam, they would suddenly begin to be able to move around with confidence.  They would understand they weren't crazy or stupid, they were just looking at the wrong map.

This is why I'm a strong supporter for early diagnosis.  The faster we can get parents the right maps, the easier their lives and their children's lives will be.

Tuesday, 27 October 2015

Alex Eats Bacon

On the surface, this isn't a huge announcement.  Almost everyone loves bacon.

But this is the very first crunchy food which Alex has ever voluntarily eaten.  (He's reluctantly eaten some crackers with the promise of a treat after but it's clear he didn't enjoy it.)  Five years ago, he would only eat pureed food and this weekend, he chowed down on crispy bacon.

We were trying a "Breakfast for Supper" night (just for a change) and I'd made pancakes, bacon and eggs.  I figured Alex would eat the scrambled eggs, since they're soft and familiar.  Pancakes were a 50-50 toss and I thought we'd be making good progress if he tolerated the bacon on his plate.  

I asked Alex to try the bacon and he broke off a tiny piece to put in his mouth.  Then another, without being asked.  Within a few minutes, he'd devoured the entire piece and reached for another one.  He ate three slices before turning to the pancake and eggs.

This is proof that his oral sensitivities have calmed enough to tolerate crunchy food.  We just need to find crunchy food that he likes.  It'll probably never be preferred but more and more, Alex isn't going to need a special menu when we go somewhere.  And that is very liberating.

Monday, 26 October 2015

Finished the Halloween Costumes

Every year I go through the same cycle.  I always got beautifully done handmade costumes when I was a kid (I had to cover them up with a snowsuit ... but that's a separate rant).  I want my children to have the same quality of costumes that I did.

I'm not impressed with the costumes in the stores.  They're flimsy and, other than the princess costumes, badly done.  So that means I make my kids' costumes every year.

And every year we begin with a cool idea.

 Then I start sewing and hot-glue gunning.

Then I start worrying that I won't have enough time to get everything done.

Then I feel like a failure because my skills don't match what I wanted to do.

Then I pull it all together and the kids seem happy with the results.

And I tell myself that next year, I'll make things simpler.  Until next year arrives and I start all over again.

Friday, 23 October 2015

Meet Julia: Sesame Street's New Muppet with Autism

Sesame Street announced a new muppet yesterday, Julia, who has autism.  It's part of their See Amazing In All Children program.  It has resources for parents of children with autism, including daily routine cards, social stories and Julia's story which explains to kids that although she may play differently than them, she still enjoys being friends.  It's aimed at preschoolers.

I think it's great that Sesame Street is raising awareness and normalizing autism.  If 2-5 year olds can accept that when a peer flaps his hands or spins in a circle, that means he's happy, then they're less likely to isolate that peer when they're all older.

I admit that I'm a little disappointed that they made Julia a girl.  Although more girls are being diagnosed, most children with autism are boys.  It is still more acceptable for a girl to be quirky and unusual than it is for a boy, so I think sometimes boys are hit harder by the social expectations.  To see a boy behaving differently than the other boys and still being accepted would have been a powerful message.

However, I'm not going to second-guess and nitpick.  The article says they spent three years putting this program together and called on a wide range of autism and childhood experts.  Sesame Street does their homework and so I'll trust there are good reasons behind their choices.

Thursday, 22 October 2015

Proud to be Canadian

Today marks the 1 year anniversary of the attack at the War Memorial which killed Corporal Nathan Cirillo.

It was a horrible tragedy and my thoughts go to Cirillo's family.  The country has moved on but I'm sure their grief is still just as strong as last year.

I'm proud of how Canada handled the shooting.  We acted swiftly to minimize casualties and responded appropriately to the threat.  More importantly, once the threat was dealt with, we didn't continue to lock ourselves away because of fear.

Horrible things happen.  They cannot be predicted and they are not deserved.  I'm proud that we chose not to allow the actions of one man to dictate our lives.  I'm sad that Zehaf-Bibeau was not able to get the help he obviously needed to deal with his anger and possible mental issues, but it would be the greatest tragedy if his pain continued to ruin lives even after his death.

Every year on Remembrance Day, my family lights a candle to remember all of those who have stood between us and danger: soldiers, police officers and social workers.  Last year we said a special thank you to Corporal Cirillo and his family.  I have nothing but the highest regard and respect for those who stand tall against the darkness and whisper: Don't worry.  I'll take care of you.

Wednesday, 21 October 2015

Crawling Toward Toileting Success

I've noticed a pattern with Alex's toileting.  Every two to three weeks, he has a small success on the toilet.  It's usually preceded by a willingness to sit and try for a few days.  After, he tends to go back to his refusals.

To me this suggests he does have some measure of control but something about the process makes him uncomfortable.  It's not worth it most of the time but then he'll try it for a bit and once he's gotten his reward, he backs off.

Hopefully it means I can also back off my search for a "standing toilet" to install.  (We had theorized that after almost twelve years of going while standing up, the transition to sitting might be too hard.)

We're cutting back on his laxative to see if that will help make it easier for his body to get rid of everything at once.  Right now we get a lot of dribbling throughout the day, although he will remain clean for school or outings.

One of the big things I need to be clear on is that these are all baby-steps.  There are no "breakthroughs" or "big moments".  At this point, we can't even be entirely sure that the steps are in the right direction.  We may be solving one problem only to put another two in its place (I've done that before with eating and dressing).

Tuesday, 20 October 2015

Speaking At Can-Con on Autism in Fiction

I'm going to be speaking at Can-Con (The Canadian Conference for Speculative Fiction) on portrayals of autism in fiction over the Halloween weekend.  (Well, not the whole weekend, I presume they'll only let me natter for an hour ... or less since other people will be talking about it, too.)

It's gotten me thinking about the common portrayals of people with autism.  They seem to fall into two categories: the savants and the punchlines.  

Rainman would be an example of savantism.  I've also seen it done in shows like Criminal Minds and Law and Order, where a child or adult with autism displays their ability to play a piece of music after hearing it once or can recite all the licence plates at a location from 3 days previous.  

Sheldon on The Big Bang Theory would be a well-known example of autism as a punchline (although the writers have been very careful to avoid saying he has autism).  In general, when it's being played for laughs, autism is used as an excuse for being a jerk.  That one bothers me a great deal because while people with autism can be brusque or unaware, they are not deliberately mean or offensive.

After some careful thinking, I've come up with my three best examples of autism portrayals:

1) "Lines in the Sand" an episode of House, season 3, episode 4.  A 10 year old boy with autism is brought to Dr. House's team, screaming in pain.  Since he is non-verbal, he is unable to tell them what is wrong or respond to their questions.  Braeden Lemasters does a fantastic job in portraying the little boy.  He avoids looking at people, he doesn't react to what they're saying, he rocks and moves repetitively, he's obsessively focused on his visual stimuli, his parents have had to give up their careers to work with him (they still have a huge house and resources, but I'll let that slide), his day is scheduled in 5 minute intervals for predictability.  They even use Picture Exchange Communication properly.

2) Elizabeth Moon's The Speed of Dark, a novel done in first person from the perspective of a man with severe autism.  Lou's confusion over understanding what people mean (he can't understand that another character is being mean to him because they are "friends") and his fascination and ease with patterns are a great insight into how an autistic mind can work.

3) Benedict Cumberbatch in The Imitation Game, although I would only count the parts of the movie which take place during World War II.  The job interview and the lunch/sandwich conversation are brilliant examples of misreading social cues and taking things obsessively literally.

Friday, 16 October 2015

Figuring Out Walking Home

For the last seven years, I've hung out with the moms at the edge of the school lot and chatted while waiting to pick up my kids.  It's nice and I've got some good friends.

The challenge has been that Alex doesn't wait well.  If he is in the least bit agitated, he can quickly spiral into aggression, looking to escape.  It hasn't been an issue over the last year because he's been working with his therapist while I pick Nathan up.

Therapy will end in the next two weeks.  Then Alex will be dropped off just as Nathan's school is ending.  If Alex is on time and we hoof it, we get to Nathan's school just as the bell rings.  However, I know that, especially as winter comes, he will be less and less "on time".  

I want to start fading back and meeting Nathan partway along the route to school, with an eye to eventually having him walk all the way home by himself.  

But if I do that, I won't have the time with the moms any more.  No more easily arranged playdates and quick catchups.  I know it always eventually had to end, but I'm really going to miss it.  As much as we promise ourselves that we'll stay in touch, we know we probably won't.  It makes me sad.

But time and independence move on.  Guess it's time for us to do the same.

Thursday, 15 October 2015

Prepping for Disappointment

Over the Thanksgiving weekend, Alex spotted a toy he wanted: a very nice metal cement mixer truck, about two feet long, with moving parts.  

He received five dollars from his great-grandmother and immediately wanted to buy the truck.  I explained that the truck was closer to fifty dollars than five dollars.  He took up a collection and managed to acquire an additional forty-five dollars.

I had mixed feelings about him getting the money.  On the one hand, I want him to take the time to earn money for the things he wants.  On the other hand, at a dollar a day for no aggression, that would be over two months.  I recall the lesson of the Gup-X, which disappeared from the store before Nathan could accumulate enough allowance.

On Tuesday, we looked again at the price and what I had thought was 49.99 turned out to be 99.99.  So Alex needs to accumulate an additional $63 to buy the truck he wants.

He handled the disappointment fairly well.  But every day since, he asks if he has enough for the cement truck.  It's going to be a long couple of months.

Wednesday, 14 October 2015

Bedtime Tantrums

For the last few weeks (pretty much since we got back), Nathan has been throwing a tantrum whenever we tell him it's time for bed.  The usual tools aren't working.

We've tried giving him transition warnings.  He'll accept them quite cheerfully and then still throw a massive fit when it's time.

We've tried cutting back on screen access before bed.  (The computer, iPad and XBox all make it more likely for him to throw a tantrum.)  Hasn't made a difference.

We've tried a "reward for good behaviour" system where the clock begins when we tell him it's time to go to bed and if he wastes time by throwing a tantrum, he doesn't have time for a story.  That actually made things worse.  We held on for two weeks to see if it was a behaviour bubble, but it wasn't.

It's getting exhausting going through the same drama every night with no chance to avoid it.  Nathan always has an excuse as to why he's upset: Alex took his toys, he doesn't want to go first, he wants to keep playing, he forgot to do something, it's not fair that he has to go to bed, he's not tired, we're being mean to him.

Our Disney trip drove home to me that Nathan doesn't have good insight into his own behaviour.  It doesn't matter how much warning he's got, once he gets upset, all bets are off.  Which means we need to avoid him becoming upset but since the problem appears to be that we need him to go to bed, I don't think we can.

I'm trying to help him become more aware of his feelings and the impact of his actions on others.  I want him to be able to realize he's getting upset and take steps to regulate himself, rather than relying on other people accommodating to him.  It bothers me greatly that he always seems to blame someone else for his tantrums.  We've had several talks that we are all responsible for our own behaviour and for the impact of our behaviour, but he seems to take it as "people should be nice to me so I don't get upset".  It's logical but misses the point.

I don't want to expect too much from him.  He's only eight, so I don't expect him to be mature and understanding all the time.  Most of the time he does very well.

Hopefully I can find a way to extend that to bedtime, too.

Tuesday, 13 October 2015

Reducing Therapy Hours

We've begun the process of transferring Alex from half-time school, half-time therapy back to full-time school.  

I'm having a bit of mixed feelings about it.  On the one hand, he's achieved all of his behaviour goals (feeding the cat, more independent) except toileting, which the therapists can't help us with because he won't go while they're there.  On the other hand, it means we go back to being mostly on our own.  The school will help and the behavioural specialist will still be working with us on toileting, but it's not the same.

He's handling the transition well, so far.  He's been used to leaving school at lunch time, so we're gradually lengthening the school day and shortening the therapy day.  By this time next month, he'll be back at school full time.

Friday, 9 October 2015

Stages of Autism Diagnosis

Last night, at the Autumn Evening for Autism, a mom talked about her emotional journey from denial to acceptance for her son's diagnosis.  She said that when they were told that her son had autism, she immediately suspected bias on the part of the doctor (the school board had arranged for the assessment) and decided to leave the school rather than subject her child to the label.

As more and more problems raised their head, it became harder to stay in denial.  She explained that she was, by turns, angry and sad.  She would be angry at other children and other families, she would be angry at her own child, she would be angry at the schools, at the doctors, at anyone involved because this wasn't how her life was supposed to be.  And then she would be sad and upset because this wasn't how her life was supposed to be and she had no idea how to fix it.

As they finally got some tools to work with, she came around to acceptance.  Yes, her son was autistic.  Yes, he needed special help.  But that didn't have to mean the rest of the family living in chaos and fear.  Once he got the help he needed, things began to improve.

This is where I feel she left out the final step: exhaustion.  Once I accepted my sons' diagnosis, it made things very clear.  I needed to do what was necessary and I needed to do it over and over and over and over if I wanted any chance of success.  I no longer had the luxury of tackling things later.  The list of behaviours and goals to work on was too long to allow for downtime.

It bothers me when it is implied that autism can be "fixed".  Give a parent A, B and C and the problem is over.  It's never really over.  The right tools make a huge improvement and I don't want to dismiss or diminish that, but it's more like being given the right tools to build a house when you're standing in front of a pile of lumber and concrete mix.  Without the tools, everything is impossible.  With the tools, you still have a whole lot of work.

Thursday, 8 October 2015

Back to Real Life

Sooner or later, all vacations come to an end and then you pay for it.  In my case, with a week of overtime to catch up from all the work I missed.

By all reports, Alex had a good week while we were in Disney.  He stayed with my parents and got to go on a little trip to Toronto to see his aunt and uncle.  He loves travelling on the train, although he was disappointed that he wasn't staying with the sister who has a pool in her apartment building.

We were waiting to see if there would be a behaviour bump after we got back.  When Alex has had a period of indulgence or a difficult transition, we often see more aggression, whining and headbanging.  It can be frustrating but it's part of what we accept as the price of respite.

To our pleasant surprise, he's actually done quite well.  His biggest regression is in accepting "no" gracefully, which wasn't exactly a solid skill of his to begin with.  We've been asking my parents to make sure to interrupt his agenda with their own goals, even if made up.  (I've seen my dad tell Alex that he wants to look at this tree before Alex looks at the stop sign ... I'm assuming that was a made up goal, but maybe he had a botany moment.)  That seems to have really helped Alex to deal with the switch between them and us.

We were told Alex had one bad day while we were gone and it was a day which came after he'd gotten a haircut (which he hates and usually triggers bad days) and didn't get his usual transition time cues.  So it likely would have been a bad day no matter the circumstances (although we generally avoid giving him haircuts during the school week for that reason).

Nathan has settled back into school gracefully, which is nice.  He's happy and excited about seeing his friends.  He's told me that he doesn't think we should have school time vacations any more but that he liked Disney.

Now it's on to the next challenges, transitioning out of Alex's therapy and continuing to raise money for his service dog.

Wednesday, 7 October 2015

Disney Day 7: Grand Finale at Magic Kingdom

We began our final day in a leisurely fashion.  Nathan and I had breakfast in the hotel cafeteria (Mickey shaped waffles), we went swimming in the guitar-shaped pool and he had another long play at the arcade.  Dave still wasn't feeling well but he agreed to join us.

We began with the Dumbo ride (go, Disney classics!) and then the Speedway.  This time I got to drive and those little cars are a lot harder to steer than they look.  We had some lunch and then moved on to the Buzz Lightyear Star Command ride again.

This time, Nathan made Ranger First Class and took his picture with the imprisoned Emperor Zurg.

Next we went on It's A Small World.  There was a 15 minute wait, but the crowds bothered Nathan so he asked to use the disability pass.  I found the FastPass line (which is usually where you sign up) on the opposite side of the pavilion from the regular line but was told I had to sign up at the regular line.  I started to leave to do it but the cast member changed his mind and told me and Nathan to go ahead.  Another nice, touching Disney gesture.

Nathan liked the ride.  I let him film it with the camera, so I have a Nathan-commentary version.  There's a lot of detail in it, so there's always something to look at.

After Small World, we went on the Peoplemover again, and showed Dave around Tomorrowland.  It's too bad Alex didn't discover that ride, he probably would have liked it.  Something to consider for next time.

Nathan decided he only wanted to do one more roller coaster, so I gave him the choice of Space Mountain or the Seven Dwarves Mine Train.  He chose the Seven Dwarves and off we went.  I think he had a good time (the combination of animation and animatronics was really impressive) but not enough to convince him to give Space Mountain a try.

We finished the day with gentler fare.  We flew over London with an enchanted pirate ship for Peter Pan's ride and I got another Nathan-commentary video for the central carousel.

We discovered Nathan is not the rightful king of all England, so my dreams of being Queen Mother will have to wait until he reaches Evil Genius levels and conquers the world.

We caught the boat across the lagoon to Mickey's Backyard Barbecue at the Fort Wilderness campground.

I'll be honest, it was very loud and all of us were feeling a little overwhelmed so we didn't each much of the buffet.  I was glad I had Nathan's noise cancelling headphones, although Dave wished we had another pair for him.  But Nathan got his picture with Minnie and Mickey and saw the trick roping demonstration.  He and I even did a little line dancing together.

It was a good end to the vacation and we flew home with sore feet, heavy bags and big smiles.  Exactly the way every vacation is supposed to finish.

Tuesday, 6 October 2015

Disney Day 6: Back to Epcot

On Day 6 we went back to Epcot after a relaxing morning at the hotel watching television and playing at the arcade.  (And getting some laundry done so we all had clean shirts again.)

We arrived and took a family photo with one of the Disney photographers.

Nathan wanted to pretend to hold up Spaceship Earth, which was the ride he was most excited about.  This time he looked carefully at the animatronics and realized they were not in fact people in costume.

After the ride, he played a number of games at the Innovation Center, including this one which was a kind of digital shuffle board where the players move "clean energy" chits to new real estate developments.  It was an interesting concept but fell a little on the preachy side for me.

We went to Mission: Space, a space simulator ride which Nathan was quite excited about.  Until he sat through his third warning about how people shouldn't ride if they were afraid of dark, tight spaces.  After that, nothing we said would convince him to try the ride.  Instead he played at Mission Control for awhile.

He did ride the Test Track, designing his own car (very powerful but not efficient).  After we went to see Turtle Talk with Crush (from Finding Nemo).  The animated turtle actually interacted with the audience, which makes me suspect it is a motion-capture animation of some kind with someone doing it from behind the screen.  Crush asked Nathan (little dude with the red shell) some questions about the human world, including what an airplane was.

We saw the giant aquarium and Nathan had his picture taken with Bruce the Shark.  We also rode the Under the Sea ride with Nemo and Friends.  (I particularly loved Pink the Starfish asking if she could come with us because she had to constantly listen to the finale song.)

We had supper at the Coral Reef, a restaurant attached to the aquarium.  As we ate we could watch the sharks and rays (and occasional divers).  This was actually the one meal at Disney which I wasn't impressed with.  The food seemed a little low-key and limited for the experience and our waiter was distracted and preoccupied.  (He took away one of my plates as he walked by the table, as I was still eating from it.)  But it was very much the exception through the whole trip.

After dinner, I thought we could go see Journey to Imagination with Figment and the jumping water fountain again (I still had hopes of trying the fireworks) but it turned out they were closed.  Rather than push it, we just went back to the hotel.

The movie under the stars wasn't working that night, so we found something on Disney Family channel (we got all of the Disney channels at the hotel): The Muppets.  I wasn't paying too much attention so I was quite surprised when an ad for Crimson Peak came on, scaring the heck out of Nathan.  (It's an R rated horror film involving ghosts and demons.)  We got him calmed down but I was definitely annoyed at whatever programming director approved an ad for a horror film during a timeslot and film aimed at children and families.

We had one day at Disney left before heading home and we wanted to have it be a great day to finish with.

Friday, 2 October 2015

Disney Day 5: Magic Kingdom

Day 5 started off with Dave realizing he was too sick to join Nathan and I at the Magic Kingdom.  So he spent the day at the hotel while we headed off for the classic Disney experience.

Nathan was reluctant to go.  He's very attuned to what Daddy wants and is doing and generally wants to be just like him.  So if Daddy was staying back at the hotel, Nathan wanted to stay at the hotel.  It took a lot of coaxing, but I got him out.  I decided to wear my Wolverine hat, which ended up getting a lot of attention and compliments (and made me very easy to identify if Nathan and I were separated).

The first thing we did was ride the steam train which circles Disney.  I'd tried this with Alex and he ended up preferring the monorail.  Nathan liked the rattling steam train though and asked to ride it several more times throughout the day.  At one point, he insisted on walking back to the train to circle around to Tomorrowland, even though we were only a five minute walk away.  But that's okay because this was his magical experience.

He and I rode Big Thunder Mountain and he had a great time, shouting and clutching his glasses.  Then we went on the Speedway, where he got to drive us around the track, bumping frequently into the rails guiding the cars.

The big challenge came in the lead up to lunch.  We had reservations with Winnie the Pooh and friends at the Crystal Palace, but almost an hour to wait.  I guessed we were about a ten minute walk away, so I thought that left us plenty of time to wait for a ride.  Nearby was Buzz Lightyear's Star Command, which had a 30 minute wait.  As we arrived, it looked longer, so I warned Nathan we might have to leave but if we did, we would come back.  I sat him down and explained that I didn't want a tantrum and he agreed.

That would be the last time I trusted his evaluation of his own temperament on this trip.  

After 40 minutes, I decided we needed to leave (I'd been giving Nathan warnings to try and get a smooth transition).  Nathan began to kick and scream and flail and I had to physically carry him out.  At which point he bit me to make me let him go.

I was shocked.  He was never a biter, even as a toddler.  He started throwing things away (his hat, his special 1st visit button, his glasses, his magic band), I shoved it all in the bag.  Normally for a tantrum like this, I would find a quiet place and let him work his way through but that usually takes a half hour and we would lose our reservation.

I decided to carry him to the restaurant and let him finish the tantrum there.  At least they would know we were there and would be unlikely to charge us for the missed reservation if Nathan couldn't pull it together.  The staff gave us a quiet and isolated room for Nathan to settle down.  I explained he was upset at missing the ride and they gave us a special pass which would let us go back and get on immediately, something Nathan appreciated once he settled down enough to be told.

Nathan and I talked over lunch.  He wasn't up to taking pictures with the characters but he waved and interacted with them.  I asked him about the tantrum and he asked me why Alex gets to leave when he's overwhelmed but I make him stay.  (And reminded me I'd told him to bite and kick if an adult was ever trying to take him away ... which was true but applied to strangers, not his mother.)

I had a bit of a challenge trying to explain why I make Nathan stay but listen to Alex's feelings.  After all, I've always told them they should listen to their feelings and respect them.  Was I imposing a double standard?  Eventually I explained it that Nathan could calm down and still have fun, which I didn't want him to miss, whereas Alex's meltdowns take so long to calm down that there's no point.  (I didn't want to say they were larger because I didn't want to "inspire" Nathan into worse behaviour to get what he wanted.)

I also asked him if any of his tantrums had worked to get him what he wanted and he had to say no.  I asked him to please try and remember that next time.  That he could do better if he asked than if he screamed.

He recovered enough to take his picture with Winnie the Pooh before we left.  We went on to ride the Buzz Lightyear ride, see the comedy show at Monster's Inc Laugh In and rode the Peoplemover at Tomorrowland.  We had passes to Space Mountain, but it was shut down for the day.  We rode the Mad Hatter Tea Cups and the central carousel instead.  I decided not to push it further although I knew he'd wanted to ride Space Mountain.

I stopped on the way out at Guest Services and asked if we could switch one of our FastPasses for our last day to Space Mountain.  I didn't want to cancel them all since we had passes to the Electric Parade.  The girl we spoke to ended up adding an extra pass to our final day so that Nathan would get to ride the Mountain.

On the way home, I asked Nathan if he'd had fun, which he agreed he had.  I then pointed out that if we'd left when he had a tantrum, we wouldn't have had that fun.  I also told him that we would not be visiting the arcade due to the biting and kicking.  (Maybe not the most consistent message for stranger danger, but I did not want a repeat.)  We did go swimming though, so I think he still ended up having a good day.

Thursday, 1 October 2015

Disney Day 4: Hollywood Studios

We started Day 4 very casually.  We slept in and Nathan got to play in the arcade.  His favourite game was a Battle of Britain simulator where he's flying a plane during the Blitz and shooting down enemy fighters.  (Incidentally, watching him play throws extreme doubt on the Ender's Game series.  8 year olds might have fast reflexes, but they do not have the concentration to protect the world from space invaders.)

After lunch, we headed out to Disney Hollywood Studios.  Our hope was to sign Nathan up for the Jedi training program.  (It's a 20 minute audience participation event, where the kids learn to use lightsabers and are tempted by either Darth Maul or Darth Vader to join the Dark Side.)  When we arrived, we discovered the program was full but were offered the opportunity to try a waitlist.  We could then show up before each of the 14 daily shows and see if a child didn't come.

I explained to Nathan how it worked and asked him if he thought he would be okay or if he would throw a tantrum.  He said he would be fine, so we signed up.  We tried one, which involved us having to sit and wait for over a half hour (and then not getting an opportunity to go).  Nathan couldn't tolerate it.  He had a full meltdown, crying and saying he wanted to go home (to Ottawa) immediately.  We waited with him until he calmed down (I thought his upset was understandable and he was crying but not violent) but I didn't want to try the waitlist again.  I even had my doubts about trying to come to Hollywood studios early on a following day to sign up.  Only 60-70 kids are permitted to do the training each day and I'm sure it fills up fast.  It would be a lot of effort without a guarantee of a result.

I spoke to the people running the program and explained that Nathan had autism and couldn't tolerate the uncertainty.  I told them about the meltdown and how just one waiting session jeopardized our entire trip.  They said there wasn't anything they could do (although they seemed very apologetic).  I left a suggestion with Guest Services that there needed to be some kind of accommodation for kids with disabilities.  I'm fine with waiting and if Nathan could have managed it and really wanted the training, we would have sat in that pavillion all day.  But in the end, it wasn't to be.

Nathan did eventually cheer up and enjoy the rest of the opportunities at Hollywood Studios.  He got his picture taken on a speeder from Return of the Jedi and we went on the Star Tours ride and rescued a Rebel spy from the Empire.

We went to the Honey I Shrunk The Kids play area with its giant toys.  This is Nathan next to the giant dog nose, which must have had fans inside because air went in and out and we could hear snuffling sounds.

We rode the Toy Story Midway Mania, where you can shoot digital guns at the displays in a series of Toy Story themed carnival games.

We saw Lights, Camera, Motors, the Extreme Stunt Show, which explained how Hollywood produces action sequences.  They showed us the safety rigs and the different types of stunt cars (including ones with the frame on backwards and remote controls).  They also demonstrated how they film action sequences in small bursts to keep everything and everyone safe.

We also saw MuppetVision 3D, which had a combination of a 3D movie, animatronics (Stadler and Waldorf were awesome) and costumed Muppets (Yay, Sweetums!).  It was really impressive, although Nathan got confused because Kermit told us it was a "test" of a new visual system.  He thought there was still another movie after that.  I explained the "test" was the movie (with my breath held, wondering if I was triggering another tantrum) but he accepted it okay.

We finished the day at the Sci-Fi Drive In Restaurant, which has car shaped booths and shows teasers for 50's and 60's B-movies (most of which I've seen because I had a weird childhood).  I even saw a teaser and poster for This Island Earth, which was beautifully lampooned for Mystery Science Theatre 3000.  (It's a hilarious way to watch B-movies.)

Dave was starting to fade and thought he might be getting sick.  We quietly discussed it and decided it was not worth another potential meltdown to try for more Jedi training, although part of me really wanted to be able to give Nathan that experience.  We decided it was just too hard for him to understand and accept.  I'll have to look into the 501st Legion when we get back to Ottawa and see if they do anything for kids.