Disney Day 3: Legoland

Today we ventured out from the sheltering ears of the mouse to visit Legoland.  Disney was quite happy to help us arrange to rent a car, provide us with maps and a shuttle to the rental place.  After that, we were on our own.  We had a few missed turns but once we found the highway, we were good.

We arrived just as Legoland was opening for the day.  As it opened, they played "Everything is Awesome" from the Lego movie.  Dave and I joked "I could listen to this song all day" and the joke was on us, since it was on a continuous loop at the front gates.

Our first stop was these giant Lego creations of Emmett and Wyldstyle from the Lego movie.  The amount of work and detail in the park's creations was astounding.

I have dozens of pictures of various Lego creations but I've tried to cull it down.  If it hadn't been blazing hot and full sun, we probably could have spent the entire visit looking around Miniworld.  Everything is built out of standard Lego.  No specialty pieces, no minifigures, no stickers, just Lego.

It didn't take us long to go through the water we'd brought, at which point we discovered that the Legoland restaurants didn't open until noon.  Not even the little food trucks for ice cream and popcorn.  I was not impressed and Nathan was tired and cranky and wanting to go home.  We convinced him to keep trying.

With some ice cream and water in him (once everything opened), Nathan perked back up.  We got him on a roller coaster (Coastersaurus) in the Dinoland section.  He really enjoyed it.

 He and Dave were both very impressed by this car built out of Lego.

They went on a boat ride.

And Nathan earned his drivers licence by passing the Legoland driving test.  (Only valid in Legoland and its subsidiaries.)

After that we checked out the Star Wars Miniworld creations, which were incredibly impressive.

Nathan decided he didn't want to visit the water park, so we wrapped up our day a little early and headed back to the land of mouse ears, but first we had one last stop at the Lego pumpkins.

On our way home, we stopped at a grocery store and picked up cereal and milk for breakfast.  Since Disney provides a fridge in all hotel rooms, we decided to skip the early morning chaos of the dining hall and have breakfast in our room before heading out.

Nathan got to play in the arcade when we came back and then we watched The Incredibles under the stars.  A very good day.

Disney (Day 2): Animal Kingdom

We started off Day 2 with a bang, introducing Nathan to his very first roller coaster: Expedition Everest, which features dark tunnels, an animated Yeti attack and surprise backwards tracking.  It's an intense first roller coaster, but he still liked it, until Dave said he didn't.  At which point, Nathan changed opinion to match Daddy.

Nathan is in the back row, hiding behind the woman in the blue shirt with the mouse ears.

After we found a ride which was more his speed, the flying triceratops ride.  Rather like the Dumbo ride, but with triceratops instead.

Then he went off to dig at the "paleontology" site with slides and climbing equipment.

After that we saw the Finding Nemo live show, which had some impressive puppetry, had lunch at Restaurantosaurus, then rode Dinosaur (where Nathan ensured I had an edge seat so I could get eaten by the Carnotaurs first).

 We finished up with the Kilimanjaro Safari ride, a 2 week safari in 20 minutes.

Disney went above and beyond for the Safari ride.  I had used the Disability Pass to reserve us a time but when we went up, the FastPass lane (where you go) was stretched out past the entrance.  I asked the cast member how long it would be and they told me about 20-30 minutes.  (The standby time was over an hour at that point.)

I told the person that I didn't think we'd be able to do it as Nathan's issue wasn't so much waiting as potentially freaking out when crowded into lines for extended times.  Since he was already tired and I'd had one meltdown, I wasn't willing to risk it.  The cast member asked me to wait a minute and got a superior.

The superior asked me to explain the situation again and then asked if it would help to be escorted to the front.  I said it would, then offered to wait an extra 20 minutes so Nathan wouldn't be "cutting" the line.  He said it wasn't necessary and whisked us up front.  Nathan ended up really enjoying the experience.

After the safari, and mindful of the previous night's tantrum, we went back to the hotel to have a rest for a few hours before our dinner reservations at Chef Mickey's.  Nathan immediately wanted his picture in the giant "A" of "All Star".

Chef Mickey did an awesome job.  Nathan enjoyed the monorail ride (although not as much as Alex) and they had us seated with a minimum of fuss and wait.  We were right next to a lovely couple on their honeymoon who were just as excited about the characters as Nathan was.  He managed to meet the full set of the classic Disney five.

After we went back to the hotel for an early night.  Dave commented that I was constantly striking up conversations with people.  It's true, I often found myself chatting with people on the bus or while waiting in line.  It didn't strike me as odd but given how the rest of my family can go for days on end without talking to anyone, I suppose I can see his point.

Sometimes I miss the art of conversation rather than directed communication.  I feel out of practice and yet somehow desperate for the contact.  Being the only neurotypical in an autism family gets pretty isolating sometimes.

We finished off the day by watching the classic Cinderella under the stars.  Nathan was quite awed by the giant inflatable screen and thrilled with getting to lie out on beach chairs beside the pool.  He didn't fall asleep, but he was awfully quiet through the whole thing.  A much better end to the day.

Going to Disney (Day 1)

Today started at an obscene 3:45 am to get us to the airport on time.  Nathan was initially reluctant to wake up but once he remembered why, he was eager to go.  We put his "Child with Autism - please handle with loving care" t-shirt on in case of meltdowns but he ended up being one of the best behaved kids on the plane.

We arrived at Orlando airport in the early afternoon and Nathan was very excited about the special "space" shuttles which the airport uses to transport people between terminals.  (The red circle behind Nathan is the shuttle window.)

Nathan goofed it up in front of the giant Hulk hand.  Apparently Marvel signed over their theme park rights to Universal, which explains why Disney doesn't have a Marvelworld yet.

Nathan on board the Magic Express, enthralled by the classic Disney cartoons.  It was wonderful to see him so excited about everything.  He kept saying "Oh My God!" over and over at each new delight.

After leaving our things at the hotel (and asking them to fix our leaky bathroom faucet, which they did very promptly), we headed over to EPCOT.  Nathan was fascinated by Spaceship Earth (the giant geodesic dome) and insisted on riding it first.

Since the wait time was only 5 minutes, I didn't bother to use the Disability Pass.  Nathan did very well waiting in line, though Dave and I tried to be a buffer for him so he didn't feel too cramped.

After the ride, we went to the Garden Grill for supper.  It's a revolving restaurant inside the "Land" pavilion at EPCOT and features several characters.

Nathan got to meet Mickey.

And Chip, who tried to steal some of his dinner.

And Dale, who was happy to mug for the camera.

And Pluto.

After supper, we saw the Circle of Life with the Lion King characters.  (A little environmentally preachy and unsubtle, but beautiful visually.  I recognized a great deal of the footage from the old Disney nature documentaries.)  After Circle, Nathan discovered the jumping water fountains.

He and Dave had a great time trying to "catch" the leaping water.

After we went to the 1980's 3D movie, Captain EO, starring Michael Jackson and Angelica Huston, along with creations from Jim Henson's Creature Shop.  It was produced by George Lucas and directed by Martin Scorcese.  It definitely had the feel of a classic Lucas/Henson film with some Tron and Star Wars elements. 

The day ended on a bad note.  Nathan had been doing so well that I decided to push him just a little more to see the EPCOT Illuminations firework show which I thought started 15 minutes after the movie ended.  (My mistake on that, it was actually 45 minutes.  If I had known that, we would have gone home right away.)  Nathan hit his wall and threw a massive tantrum, hitting and kicking in a frankly shocking display.

This left me with a real dilemma.  Although I realized he had been pushed too far, I couldn't risk reinforcing the behaviour.  I restrained him to keep him from hurting himself or anyone else and waited for him to calm down and ask calmly to go home.  It was embarrassing (although people, especially the staff, were quite helpful) and it took an agonizing 40 minutes for him to work his way through.  We left just as the fireworks show was starting and got him back to the hotel as quickly as possible.

I made a mistake in reading how tired he was and how quickly he would go from accommodating and eager to whirling tantrums.  In all though, I still think it was a good day.

Dealing With Costs

I really like my job but there's one part which makes me feel sad and that's having to explain how much private therapy really costs.

I've had the entire gamut of reactions, from parents insisting I was trying to rip them off to acceptance.  I've had them hang up in numb disbelief and I've had them try and negotiate.

It's not cheap.  Half a day of therapy each week can easily be over a thousand dollars and most families spend between $35 000 and $ 70 000 each year, per child.  I've seen families go broke, lose their house, sacrifice their retirement and still not be able to pull together the funds to continue.

Medical costs aren't something we generally have to think about in Canada.  But this little taste of what it must be like to live in a non-health care society is shocking. 

We've been lucky that we've been able to skid through financially.  Granted, our house is un-updated from when we purchased it (we're the only house on the street that hasn't had some kind of renovation or work), we don't go on vacations and buying new clothes is a carefully planned luxury.  But we're in far better shape than many others out there.

We're coming to the end of the latest round.  It's gone over what we had initially saved, but we have been able to make up the difference.  I know there will be more bursts of intensive therapy in the future, none of which are likely to be covered. 

I do try and be honest with parents, that this is a major commitment but it is possible.  And to a point, it's also necessary.  Time and money spent now can make a big difference on how much time and money is spent later, without even touching on your child's quality of life.  But it's heartbreaking when I know someone is willing but just can't pull the funds together, not even through bone-cutting sacrifice.

That's why I try to raise awareness.  So far, not one political party has supported comprehensive funding for autism treatments.  If that were to change, I bet they would discover a whole lot of hidden votes.

Too Strong To Fail

I'm sure many special needs parents can relate to this: someone telling you how they could never do what you do.

It's always intended as a compliment.  And so I try to graciously accept it as one.

But I don't think I'm that unusual.  Parents find themselves doing all sorts of things which they never thought they could or would do.  When I was a teenager, I thought that my revulsion for dirty diapers pretty much made me parent-incompatible.  (Personally, I think this is a birth control tactic which is being seriously overlooked.)

I find it curious that we have these two messages: we tell parents that 'it's different when it's your child' which is true.  All the rules of disgust fly out the window when we care about someone.  But we also act as if the reality of caring for children has limits.  Whether your child kills someone, is developmentally disabled or simply a mooching burden, it's always different when it's your kid.

Maybe we should stop putting these parents on pedestals and start providing real supports so they don't have to feel alone and out on a limb for caring about their children.

Silencing Our Voices

This is a bit off-topic for me but it's something which has been bugging me, so I'm going to share.

Over the weekend, I saw a little boy pestering a little girl (I presume his sister).  I'd guess they were about nine years old.  He poked at her and yelled at her and she responded fairly maturely by ignoring him and going to another section of the park.  At one point, the mom called them over for a snack.  The boy ignored her but the little girl came over quite promptly.  Mom called again, this time annoyed.  The boy came running over and shoved the girl out of the way to get his snack first.  The girl shouted "That's not fair" and began to push him back when Mom intervened and told her to not make a fuss.  Then she gave the boy his snack first and the girl hers second.

Now I get the craziness which comes over parents when no price seems too high to pay for two seconds of peace.  I'm betting this mom has to deal with a lot of squabbling and challenges and I certainly don't know the whole story.  But since then it's been bothering me that this little girl was told not to speak up when she was wronged.

Too often we are told not to make a fuss, that there's no point in complaining because nothing will change and we will only make things worse.  I saw another story where a young woman debated whether or not to speak up after a tour guide made an appalling rape joke while giving her directions in a foreign country.  She decided to speak up and got apologies from the company and the young man in question lost his job.

There are always bullies, selfish and inconsiderate people and the flat out ignorant.  We are not obligated to fix them but at the same time, we should not allow them to impinge on our own boundaries without consequence.  We may decide not to engage, but it shouldn't be the default choice.

I'm not entirely sure where and how those boundaries should be drawn.  I'm not for provoking fights and I believe many bullies crave the engagement.  But I don't like having to swallow someone else's problem and bad behaviour.

Either way, I think the little girl should have gotten her snack first and been told she was doing the right thing by standing up for herself.

Special and Communal Toys

Yesterday, I watched a lot of fighting over a new toy which Alex picked up for himself, a rather nice little Jeep with several moving parts and a little man to go with it.  In our house, we have a rule that new toys are "special" for the first day you get them, which means that you don't have to share them with anyone else if you don't want to.  After that, unless they are tucked in your room, they become communal toys that everyone can play with.

Nathan is quite big on this rule when it's his toy but when it's Alex's, he lurks like a vulture, snapping up the toy if Alex so much as looks away.  When I ask him to give it back, Nathan protests that Alex wasn't playing with it anymore.

We've been working on this for awhile now, mostly targeting the snatching.  If Nathan takes the toy while Alex is near it, then he loses a privilege.  If he takes it and refuses to give it back when asked, he also loses a privilege.  I'm not sure how strict a boundary I should enforce.  Should I tell Nathan he can't touch it at all during the first day, even if Alex walks away from it?  I think that's asking for more self-restraint than an 8 year old can muster but the constant pestering is driving me nuts.

To a point, it's normal.  Kids want what they can't have and a bright shiny new toy just out of reach has been a marketing mainstay for generations.  I'm fighting evolution here.  But I do need to get respect for others and empathy across somehow.  I know it's early for both, but I figure I'm going to need to do some extra drilling on the subject.

I guess I just need to resign myself to constantly repeating the same instructions over and over.  Sooner or later, he'll get the message.

It's Sad but True, and somehow not that sad

This is my life.  Don't judge me.

I can't wait until the new season of TV starts.  I am a certified story-addict and it has been a long summer of reruns and reno shows.

I tell people that Dave and I watch a lot of TV because we don't have the money or availability to go out and do other things.  This is true but not the entire story, because even before we had kids, we had dozens of shows which we followed through the week.  Shows we genuinely cared about and debated and actively thought about rather than just watching whatever happened to be on.

I have vague guilt that I'm somehow not being productive, that I should spend my hour or ninety minutes of TV time learning a foreign language or crocheting hats for premature babies or something else worthwhile and self-improving.  But I don't.  I allow myself the pleasure of losing myself in the story and relaxing.

It's the equivalent of an hour-long vacation each day, an escape from all the things I should be doing, all the things I wish I could do and all the challenges I have to face.  I think I need that vacation and it is what keeps me going.

So I won't apologize... much.  Or at least, I won't really mean it.

Bullying and Exclusion

This year is Nathan's first one in Cubs.  I'm pretty nervous about it.  In Beavers, the kids are 5, 6 and 7.  No one expects a great deal from them and there's a lot of adult supervision and encouragement.  Now he's with 8, 9 and 10 year olds, which is a big jump.  They're expected to self-regulate more and be more independent.

I've also heard from one of the other parents that there is a bully in our group, one of the 10 year olds.  He's not in Nathan's sub-group of six but last year, they kept moving him around, so we could end up with him.  I have no idea which child is it, but Nathan is a potential target for bullies as he's got a quick temper and no idea how to build social alliances.

One of the moms was quite angry that this bully was allowed back into the program after making so many kids miserable last year.  On the one hand, I can see her point, on the other, I've been the parent being refused for what should be "open" programs, so it would make me very nervous as a precedent.

I think this is one of those things which regular parents don't think too much about.  No one thinks of their kids as being difficult or bullies, and for the most part, they're right.  I constantly worry about my kids being labeled as bullies and I know they're often the most difficult child in any given group.

With Nathan, he has a hard time understanding what is and isn't socially appropriate.  He tends to assume people will feel the same way he does, so if he thinks something is funny then it's a joke and if he's upset then it was an attack.  I could see him imitating a bully, thinking that the bully is being funny (since they often have their cronies laughing at their cruelty) and not understanding that he's hurting someone's feelings.  On the flip side, if he assumes someone is attacking him, he will lash back at them, even if the "attack" was an accident.  I'm working on both these things, but I doubt I'll ever be able to eliminate them completely.

With Alex, he is oblivious to tauntings but he still uses aggression sometimes to get what he wants, especially if he wants to get out of a given situation.  It's the downside of responding so predictably.  Since we remove him if he gets aggressive, it's become a tool to avoid having to endure things.  It's not his first choice, which is progress, but it's still clearly on his mental list of options.

The first meeting for Cubs went well.  The leaders told me that Nathan did well at paying attention and following instructions.  One of his leaders was his Beaver leader last year, so he's got someone who is familiar with him.  I think that's honestly the best I can hope for.

New Approach for Toileting

I've lost count of the number of different approaches we've tried for toilet training Alex.  Needless to say, it's been a lot.

We have not had much luck with the big reward for producing a BM in the toilet.  His successes are so rare and far between that there's no chance to build on them.

So we're stepping back and doing checks every half hour for cleanliness.  If he's clean, he gets a marshmallow.  If he's soiled and admits it, he gets a marshmallow.  If he lies, no marshmallow and he gets cleaned up.  Hopefully this will encourage him to stop hiding when he's had an accident.  Then we can maybe encourage him to start going to the bathroom for his accidents (just to the room, not necessarily using the toilet).

It's not great but it's still something to try.  Fingers crossed we can make some progress.

Strike One for the School Board this year

Unlike baseball, the school board never quite runs out of strikes while they're at bat.  But we've gotten our first swing and a miss this year.

Alex is still doing half days of therapy, so he needs to be picked up in the middle of the day at school.  Last year, the school board arranged for his regular transport van to pick him up and drop him off at home.

This year, we've been told we can't because we're paying for the therapy, which makes it a private, voluntary service and thus our own problem to make sure he gets there.  (I've heard of other parents being denied because they are in the AIPEO program and the school said it should provide it's own transportation, which it doesn't ... I smell cost-saving denial of service here.)

This isn't the end of the world.  The school is less than a five minute drive away (getting a red light almost doubles my commute time) and I work from home with an understanding boss.  Also, Alex will be wrapping up therapy, so I only need to worry about it for the next few months.

I'm annoyed at the principle of the matter.  He's not permitted to walk or ride the regular bus because of his diagnosis but they aren't willing to drop him off at his home for therapy?  If I was asking them to drive him across town, I could see an argument in their favour, but not this.  I could appeal, but the process takes several weeks, at which point the need would be almost over anyway. 

I could fight this battle, but it's not worth my effort, which ends up bothering me as well.  Because organizations like this (looking at you, insurance companies) rely on keeping things just difficult enough to discourage people from asking for what they're entitled to.  And as long as it works, they'll keep doing it.  It's the tyranny of bureaucracy where getting the numbers to add up is more important than doing what was promised.

I'm lucky.  We're in a great school which is close with a great program and great staff.  This isn't an issue with the school, it's with the bureaucracy behind them.  The one more interested in making sure the rules are followed than in common sense and compassion.

Benefits of an Aspergers Marriage

For those who don't know, I live in an autism household.  Both my boys and my husband are all on the autism spectrum.  It gives me a bit of a unique domestic situation.

The other day, I was deeply annoyed at my husband for something.  (I'm not being coy, I actually can't recall the details any more, which means it was probably something trivial like forgetting to take out the garbage or leaving his iPad in a drawer to chirp annoyingly at me all day.)  As I was dealing with it, I reminded myself that there are a number of benefits to my marriage.

First of all, there are absolutely no games.  I never have to try and interpret what he "really" means.  I do have to be careful what I ask as he will answer the literal question and miss any deeper meanings which I intend.  For example, if I ask "Do you want to go out tonight?" the answer will always be "no" because he prefers to stay at home.  It doesn't mean he's unwilling to go out, but that's not what I asked.  If he says he enjoys or likes something, I can take it at face value and not worry about it any further. 

Second, I always know when he lies.  I love him but he can't make up a story to save his life, not believably.  It used to make surprises difficult, until he learned he can tell me the truth, just not all the details.  If he tries to claim he went to the grocery store when he was picking up a present, I will know and hound him for details.  If he tells me he went shopping for a present, then I know not to push.

Third, I can benefit from his obsessive attention to detail in certain areas, like car maintenance and computer security.  I don't need to lift a finger or strain a neuron, it all just happens.

There are definite challenges, like always having to be the one to call around for any services or information.  Or his tendency to assume I know what's going on without him needing to tell me.  But in the end, those aren't so bad.

Different Voices

We've been working on getting Alex to use the right volume in the right setting.  His therapist came up with a social story with different voices:

Lion voice: big and loud, for outside

Sheep voice: quiet and clear, for talking to people

Mouse voice: whispering, for quiet time

Butterfly voice: inside your head, so no one else can hear

He's having a lot of trouble with the butterfly voice.  I suppose I shouldn't be surprised, how can I demonstrate a sound which can only be heard inside my head?  I'm trying to use earbuds and lip-syncing to "butterfly sing" but I don't think he's quite grasping it.

Right now, he has no internal monologue.  If he's got a song or a bit of dialogue in his head, we all have to hear it.  If he's enjoying it, he'll do it at a very loud volume.  Since I'm one of those people who can't tune out the sounds around me (I go nuts in shopping malls with bad music), it gets really frustrating.

He's doing fairly well with understanding when to use Lion, Sheep and Mouse.  He needs reminders sometimes but he'll adjust quickly.  Fingers crossed we can find a way to give him mental privacy for his thoughts.

Back to School - Finally

Just about every parent I know has had a rough week with the final days of summer.  It was a long one (10 weeks instead of the usual 9) and I think most kids are ready to go back to school.

Alex and Nathan both had difficulty, which I suspect was transition anticipation.  They both get anxious when there is a big transition coming up.  Alex will complain and whine more and Nathan will retreat and sulk more.  We tried not telling them about the transitions, but found the shock of a sudden change made things even worse.  So now, we tell them and try and grit our teeth through it.

We've done what we can to alleviate the stress.  We went to visit both schools and ran through which door they'll go through, where their classrooms are, where they'll put their books, etc.  We've had social stories about what happens next year that we've been reading since June.  I involved them in getting their school supplies and preparing for today.  Anything I could think of to increase their sense of control and reduce the unknowns.

It's going to be very quiet today after 10 weeks of having to hide up in the office to get any work done.  I can move back down to the nice, bright kitchen.  I'll miss them, but I am glad to have my own time back.

Ontario Ombudsman Will Now Accept Complaints Against School Boards

For those like me who were a little sketchy on what the Ombudsman does, it's an office which investigates claims against provincial government agencies.  People are supposed to contact them if they've exhausted all other routes of getting their grievances settled.  However, for some reason, they were not legally able to investigate any claims about local Ontario school boards, until a few days ago.

The Ottawa Citizen announced that as of September 1st, the Ontario Ombudsman will accept complaints against the school boards.  The article does not say anything specifically about refusal to accommodate special needs students, but I would certainly think that would fall under the "last resort" category.  I assume they will only deal with specific cases rather than general grievances, but it still gives parents a legal authority to report to if a school is not providing the help they've agreed to.

If you have a complaint to register, you can go to ombudsman.on.ca, email info@ombudsman.on.ca or call 1-800-263-1830.

Results from Saturday

Okay, now that my computer is working again, I can actually do this blog entry.  I've ended up having to rewrite it five different times since Monday.  It still won't let me add in a picture without crashing.  Not impressed, Blogger.

Saturday's performance at Finnegan's Roadhouse raised over $ 1300 for Alex's service dog.  The owners of Finnegan's donated $ 200 personally and I ended up winning $ 92 in the 50-50 draw which I put back in the donation bin.  I'm still amazingly impressed by these young ladies and their determination to help out.

Alex was able to come to this performance and he absolutely loved it.  I think he has a little crush on the lead singer.  He jumped up and down and danced in front of the stage, arms and legs flying (he's not earning a ticket to Vegas on So You Think You Can Dance anytime soon but you can't doubt the enthusiasm).  The picture I was trying to post shows Alex grinning with the three girls of Pure Antics.

Thanks again to Finnegan's and Pure Antics for their efforts.  It's making a big difference and getting us that much closer to our goal.