More Thoughts On Disney's New Policies

On Friday, I posted about Disney revoking their disability passes for families with special needs because of abuse by wealthy families who wanted to skip lines.

There's a lot of chatter on Disney message boards about this, debates about the merits of forcing people to return to the front of the park to register for each new ride, whether or not special needs families should have more rides than regular families, whether or not special needs children's lack of stamina should be taken into account.  It all falls into one of two categories: how can the special needs pass be made less attractive for abuse?  And should families who already have it tough be penalized?

What bothers me is that no one appears to be focusing on the actual problem: those who were accepting money to abuse the system.  Disney already has the FastPass system which allows people to join a shorter line for a fee.  But that wasn't acceptable to people of entitled privilege.  They wanted to skip the lines entirely.

There's a lot of talk about what's fair.  Well, here are a few problems with using that as a business standard.

It is not fair that people with more money can have privileges that those without cannot afford.  But it is also not preventable.

It is not fair that families with special needs have more challenges than those without.  Trying to make all families' experience equal is not in and of itself fair.

Fairness is not treating everyone the same.  It's taking into account the different circumstances in each person's situation, which quickly turns into a nightmare of bureaucracy.  Or it means having a system which you know and accept can be abused because that's the only way to make sure those who need it have access.

We've been planning a Disney vacation since last year.  It will take us two years to save up the money to go with Alex.  Now we have to wonder whether or not it will still be a positive experience for him or if we're just setting ourselves up for massive meltdowns as we have to traipse back and forth to the front of the park all day.

And that, my friends, is not fair. 

Yawning and Autism

Scientific American published a very interesting article about yawning and children with autism.

It has been known for awhile that people with autism don't find yawning as contagious as people without.  For a long time, this has been assumed to be a lack of empathy.  But the new study suggests that it may actually be lack of observation.

It does make sense.  If a person isn't looking at someone's face and has a tendency to tune out the sounds around them, what would trigger a sympathetic yawn?  In this study, they encouraged children with autism to look at person's eyes or mouth by having them count blinks or smiles in a recorded video.  Of course, the video also included yawns and the scientists then counted how many yawns were triggered.  The rates were similar to the control group without autism.

The exciting part about this study is that it suggests teaching children with autism how to observe might help them to overcome some of their social challenges, particularly if it is done early enough that the automatic mirroring neurons have a chance to come into play.

When Alex was starting therapy, the therapist suggested that I put stickers or other things on my face at random intervals to encourage him to look at me.  (I will not recount the embarrassingly large number of times I forgot about the sticker and went out in public.)  I wonder sometimes if this helped Nathan even more, since it encouraged him to start looking at faces at an even younger age.

Alex still tends to look at faces in a piecemeal fashion.  If you watch his eyes, you can see he's picking one part of the face and sticking with it.  (Often the eye, nose or chin, for some reason.)  Nathan in contrast has very natural eye contact, except when he's stressed or highly focused.  He finds it very hard to look at someone when he's upset but then will get more upset as he misreads the other person's social cues.

I find I have to tell him to look at me and then keep my message short and on target so that he's got a chance to absorb it.

Disney Shutting Down Disability Passes

For awhile now, Disney has had a policy in place which allowed people with disabilities to skip the lines when they weren't physically or emotionally able to tolerate the wait.  This has been a great program for families with special needs children or parents, letting them enjoy what should be a wonderful family-oriented holiday.  Unfortunately, there are those who decided they shouldn't have to wait with the plebes.

The discovery of blackmarket 'disabled' guides who are paid to escort wealthy families to the front of the lines was bound to spark outrage and policy changes.  I've been waiting to find out what Disney would decide to do.

As of October 9th, the Disney Guest Assistance Card program will be cancelled.  It will be replaced by a Disabled Assistance Card program.  I don't think anything has been finalized but it looks like disabled people will be able to reserve a time to ride an attraction.  Only one ride can be reserved at a time and people will still have to wait the equivalent of the line time.

There are families with genuine disabilities who are concerned about having to track back and forth to Guest Services and wait in line each time to sign up for the next ride.  Some of the blog posts I read suggested that Disney may allow families to book a ride series (ie. 9:00-10:00, It's a Small World; 10-11, Space Mountain, etc.).  Personally, I think that would be a great idea, especially for kids with autism.  A schedule for the day would make the visit much easier.

Of course, I'm also cynical enough to believe that privileged wealthy families will continue to find ways around the system.  Money and an assumption of superiority can batter down a surprisingly large number of doors.  To me, Disney should accept that and offer ridiculously expensive "skip the line" passes (maybe $ 1000 per ride?) and donate the money to charity.  A charity which helps special needs families would be a great ironic counterpoint, don't you think?  Heck, even a charity that brings special needs kids to Disneyworld for free, like Dreams Take Flight.

Disney's made real efforts over the years to accept all shapes and sizes of families, no matter what their needs.  I'm hoping they continue to do the right thing.

A Laugh To Brighten Your Day

Lately I've noticed that our TV guide descriptions have changed from dull, useless sentences (Eg: The X-files: FBI agents investigate supernatural and extraterrestrial phenomena) to much more colourful (but still mostly useless) offerings.  I've actually seen the term "florid" used twice.

However, I cannot resist sharing this description of The Bourne Supremacy.

I'm sure that Matt Damon is thrilled to have the support of the Roger's description person.

(For those with trouble seeing the picture: "Just as Sean Connery was born to play James Bond, Matt Damon was born to play Jason Bourne, the amnesiac CIA operative suffering an identity crisis.  In this rip-roaring sequel, he's framed, then goes gunning for agency higher-ups.")

Interesting fact: Sean Connery hated the character of James Bond and has been quoted "I have always hated that damn James Bond.  I'd like to kill him."  Perhaps 'born to play' is an exaggeration.

A Stay of Execution

First, I want to thank everyone who read my post yesterday and contacted me to offer help.  It's really amazing to feel the community pulling together.

I spoke with my helper yesterday and we had a good talk.  She was under the impression that I wasn't pleased with how things had gone for the first day and that had made her nervous about continuing.  I let her know that I was quite happy with how things had gone (particularly for a first day).

She's still somewhat worried about Alex's aggressiveness but is willing to give him and us some time to get used to the situation.  Winter driving is also a concern but we'll cross that bridge when we get there.

Things are still a little unsettled but I'm no longer worried about having to get someone in right away to replace her.

Not My Day

Today is what statisticians like to call clustering.  I just call it a really difficult day.

A lot of yelling (or aggressive typing) from clients at work along with being confronted by situations where we can't actually help.

Partway through the day, I get an email from Dave telling me that our after-school helper has asked me to call.  I didn't have her number at work so I had to wait until I got home.  Throughout the day I'm getting more and more nervous that she's planning to quit and telling myself not to jump to conclusions.

It turns out the first voice in my head was right.

I can't fault her reasons and can even agree with them.  She's concerned about the winter weather and the distance between our homes.  She's also concerned about Alex's aggressiveness and possibly reinjuring herself after having already been through a long recovery.  I'm grateful for her offer of help and can't thank her enough for making it.

This doesn't prevent me from feeling like I need to curl up in a corner and cry.  I tried for so long and so hard to find someone to help and now I feel like I'm back at square one.  I was so happy to have this resolved and now I have to cope with it being reopened.

I'm also upset at what I'm afraid could be part of a disturbing trend.  This isn't the first person we've had leave after Alex's aggressiveness, although he is much better than he used to be.  If he continues to frighten people, finding help could only get harder.  And he's only going to get bigger and stronger which makes the potential damage even more frightening.

I'm giving myself tonight to wallow in my emotional pain but tomorrow, it's back to figuring out solutions.  Our helper has very graciously agreed to give us a few weeks to find someone else.

I just wish I had a good idea of where to start looking.

Nathan Quote of the Week

Nathan is getting to the age where he and his friends have the occasional "girlfriend" by which they mean someone for their peers to tease them about.

During pickup, one of the moms asked one of Nathan's friends about his girlfriend.  Curious, I decided to see if it was time to update our birds-and-bees speech.

Me: Do you have a girlfriend, Nathan?

Nathan: (shaking his head) I like to keep my options open.

Dollhouse Update

When both the Little Mermaid and my girls' night were cancelled this weekend, I sank my disappointment into dollhouse repair.

This is what the tower looked like when I got started.  Note the entirely missing panel on the left hand side of the picture and the half-destroyed panel on the right.  The upper story of the tower was actually mostly being held together by the wallpaper.

And here is what it looked like after.

 

 

My husband got me those clamps as a gag gift over a decade ago.  Now I've actually discovered a use for them.

 

I was also able to repair the side porch.  Which wasn't actually broken during the dropped shelf incident but rather was the result of some overenthusiastic playing when I was twelve.

 

 

I did up new support columns, reshingled the roof and gave the whole thing a fresh coat of white paint.  Overall, I think it looks pretty nice.

 

 

 

No Little Mermaid

Apparently the Little Mermaid's theatrical release has been cancelled.  I just found out about it this morning, with less than an hour to go before we were to leave.

I'm upset and disappointed.  I'd been looking forward to sharing the movie with my kids.  We'd listened to all the songs and I'd told them the story.  We do own it on VHS but unfortunately don't have a working player right now.

Between the rain and the cancellation, it's starting to feel like a crappy weekend.  But I should probably pull myself together before I find myself curled in a corner listening to country music.

What Would You Do?

Last night at Beavers we had to watch a information video about what to do if we see something we think is inappropriate or suspect abuse.  (Tell someone according to the guidelines of your local Scouting organization, apparently.)

It got me thinking.  We all know that we should report abuse to the authorities.  The tricky part is to decide what constitutes abuse or a significant warning sign.  After all, most abusers don't full out beat or molest kids in public view.  They know what they are doing is unacceptable and so create a culture of secrecy around it, one that children don't know is abnormal.

It feels like it's time to take the next step in abuse prevention.  But what would that be?  From case studies, it's fairly obvious that it's difficult for children to tell anyone when they're being abused.  One great tip I heard was to encourage your child to tell you any secrets they were asked to keep.  That it's okay to tell Mommy and Daddy everything, even if someone asks you to keep it a secret or tells you it'll get them or you in trouble.

The video also made me sad as I thought about the subtler forms of schoolyard torture, like exclusion and mockery.  I was bullied a lot as a kid and I worry that my boys will be bullied since they're different.  I've seen kids with Aspergers being mocked to their face and not picking up the social cues to realize the hostility.

One of the examples was a team event where one child doesn't want to participate and the group heads off without him.  Should the team be forced to include the non-participating child?  Should the child be allowed to opt-out in peace?  To me, that's a no-win scenario.  The kids will resent having to include someone who doesn't want to participate and the child will resent having to participate.  But if the team is allowed to exclude someone because they're slow or confused, that's not good either.  The video didn't give a good answer to that, suggesting that the best option was to talk to everyone later.

I don't have a good answer either.  To me, that's a situation which has to be dealt with in preparation.  Once it's reached the crisis, it will take a long time to undo the attitudes which made it an option to begin with.

I tell myself that I'm borrowing trouble.  Alex is happy in his segregated class and well-protected by the teachers.  Nathan is enjoying school and Beavers.  But I can't help worrying and wondering.

TV Interview

We were interviewed last week by Bryan Mullan from Global news to be part of a feature about services for families with autism and the effectiveness of early intervention.

I don't know when the piece will air.  He's still interviewing people and gathering footage but he's promised to let me know.

At the end of the interview, he asked me if I blamed the government for Alex's lack of progress since they didn't have early intervention for him.  My automatic response was cautious.  Blame is a strong word and I didn't think it accurately reflected my feelings.

Since then I've been thinking about it more.  Being a perfectionist who does better with a keyboard then impromptu comments and having myself this blog as an outlet, I've decided to give it another go.

There are undisputed facts.  We had to wait a year for diagnosis and then another two years for government-funded comprehensive treatment.  As the government does not endorse any treatment method for autism, we were left to figure out the best path on our own.  Because of the delays, Alex's progress is somewhat less than it potentially could have been.

I don't blame the government.  Autism is expensive to treat and a relatively new phenomena, only first diagnosed in the 60's and initially thought to be the result of emotional abuse.  The government is a massive bureaucracy, with all the caution and inertia so implied.  They had made a practical political decision to turn a blind eye to this particular problem and focus on other issues. 

Now they are becoming more aware.  Now they know that an untreated child is likely to become a burden to the taxpayers, along with his parents who are likely to have burned out their savings and retirement years to manage their child's treatment.  They know that effective early intervention is possible.

If they continue to choose to place the burden exclusively on the families, then I will blame them for their inaction.  I can accept slow change but I will not accept willful blindness.  Once they know, then they have a duty to act.

Nathan Quote of the Week (Marriage Advice)

On the weekend, I went to my cousin's bridal shower.  It was a lovely event and I'm sorry to be missing the upcoming festivities in Nashville.

I explained to Nathan where I would be, that I was going to see Cousin Dom who was getting married.

Nathan: Married.  To a boy.  Like, forever?

Me: (feeling romantic)  Yes, sweetie, forever.

Nathan: (pauses to consider) Tell her to wear nice shoes.

Now why can't Dr. Phil have advice that straightforward?

Men: 1, Women: Why Diminish Their Achievement by Actually Counting?

Today is our wedding anniversary.

And I completely forgot.

Not: I put it out of my head to think about it later or I thought about it a few weeks ago and decided to wait and see.

Nope, not on my mental radar or physical calendar.  100 % completely forgot.

This morning I'm rushing about to get things off the floor for our cleaners and trying to deal with the school and driver to let them know that Alex is staying home sick.  I'm filling out forms for Nathan and writing cheques and, in general, mentally flying at around Mach 3 trying to get everything done.

And Dave puts down a pink silk rose and a Wolverine action figure.  He tells me "Happy Anniversary."

My immediate thought: guilt-laced "oh crap" followed by the more socially appropriate thank-you.

Usually I try to do a special dinner for our anniversary, one of the things Dave really likes: lasagna or chicken parmesan.  But I already planned our dinner, the slightly less beloved tacos which Nathan and I love and Dave tolerates.  And I have a chicken pie for tomorrow night.

He says he's not upset and seems secretly pleased to have trumped me in this particular hand of Relationship cards.

All in all, I have to give this one as a clear no-contest win to the Men's side.  Savour it, guys, and mark it on the calendar.  Well done.

Big Decisions for Life and Career

First off, sorry I've been off for awhile.  We had some technical difficulties.

I've been doing some thinking.

Over the summer, my intention was to find a working balance between my job, my writing and exercise while the boys were at school.  It seemed rather simple.  I would have time between 9 and 3:30, Monday to Friday.  The vast majority of that would be swallowed up by 4 hours of work but that still left two and a half hours each day.

I've done some experimenting over the last two weeks and what I've discovered is the problems I had last year have continued.  There's always something else that needs doing: laundry, groceries, errands, special events.  Oh yeah, and I occasionally want to see a friend or two.

Despite the promises of various lifecoaches which promise that everyone can have it all if they are efficient about their time, I can't seem to manage making everything work.

I have to make a choice: writing or exercise.  I love writing but I also love being healthy and alive and would like to continue with those options for a long time.  I'm not one of these people who get a thrill out of exercise but I recognize it as part of what I have to do.

It was difficult but I've decided to stick with writing for now.  It's too easy for me to fall into fear-procrastination where I convince myself not to try because I'm afraid I'm not really any good anyway.

I gave myself at least an hour at the keyboard on Wednesday, Thursday, Friday and Saturday last week and I discovered something else.  I actually feel happier.

When my life is filled with work, obligations and responsibilities, I get worn down and resentful no matter how much I know what I'm doing is the right thing to do.  Exploring my stories and my worlds gives me the energy I need to continue with the rest of it.

I'm sure my doctor will be horrified and read me the lecture about how I'm practically signing my death warrant.  But this feels like the right decision for me and so I'll be sticking with it.

Sensory Friendly The Little Mermaid (Sept 21)

Empire Theatres in Kanata will be showing The Little Mermaid in a sensory friendly format (no ads or teasers, adjusted volume and lights) on Saturday, September 21st at 10am.

Nathan Quote of the Week

Nathan had a nightmare last night.  It happens periodically and when it does, he usually comes scurrying for our room to sleep in our bed.

I dutifully made room for him and let him crawl under the covers.  Shortly, we were all asleep again, my husband snoring away like a chainsaw cutting through a knot.  (He denies he snores but we all know it's true.)

As I woke up, I had a little hand curled around my shoulder and I thought that this is one of the nicest ways to wake up.  Not the greatest way to sleep, but a nice way to wake up.

Nathan opened his little eyes and gave me a hug.  I asked him if he was feeling better.

He nodded and said: But I'm still feeling scared.

I hugged him and asked: Do you want to sleep in Mommy and Daddy's bed again tonight?

He paused to consider: No.  Your bed is too noisy with Daddy in it.

Quebec's Charter Ban Targets Women

Ordinarily I try to stay out of politics, especially politics in areas where I don't have voting rights.  But the new Quebec Charter of Values is really pissing me off.

When I first heard about it, I assumed it was a publicity stunt since I didn't think anyone would actually be stupid enough to think this was a good idea.

For those who haven't been following, Quebec is proposing to ban all "overt religious symbols" from public service, including judges, police, prosecutors, public daycare workers, teachers, school employees, hospital workers and municipal personnel.  Specifically targeted items are: the kippa, the hijab, turbans, burkas and large crosses.

Here's a diagram of banned symbols (illustration from the charter):

Here's the diagram of permissible symbols (also from the charter):

It doesn't take a genius to figure out that non-Christian symbols are targeted much more intently than Christian symbols.  To me, this would be a slam dunk appeal to the right to practice religion without persecution.

The civil rights debate (or rather explanation of why the PQ can't do this) is being extensively covered and I don't need to weigh in on it.

What particularly bothers me is that the majority of the symbols and positions targeted are held by women.  Which means that the government of Quebec is actively discouraging non-Christian women from the public service.

I have problems with repressive cultures but I also know a fair number of Muslim women and for many of them, the hijab is a modesty issue.  To force them to go without it is like forcing any other woman to go topless.  Anyone can figure out that means they will likely quit their jobs or not apply rather than comply with the Charter.

As for those women who actually are being repressed, the Parti Quebecois wants to prevent them from gaining one of the few things which could actually help them become truly free: a steady source of independent income and benefits among a culturally diverse environment.

The blatant intolerance gives me the same feeling of disbelieving disgust that I felt when reading the Newcastle letter to the autistic family.  It is almost literally unbelievable that people still feel this is acceptable in today's society.

The Return of MST3K

Most of you probably have no idea what MST3K stands for.

It was a little Comedy Central show back in the 90's: Mystery Science Theatre 3000.

In high school, we used to get episodes mailed to us by a friend in the States.  Actual VHS cassettes mailed every couple of months.

The premise of the show was simple.  They picked the worst B-movies ever known to man and played them while talking over them, pointing out inconsistencies and adding funny bits of dialogue.  It may sound stupid but it was hilarious.  Here's an example:

Hysterical Girl (in movie): Why won't my hands move?

Alien (in movie): The handgrips are magnetic, for your safety.

MST3K: Which would mean something if your hands were made of metal.

I've waxed nostalgic for them many times but accepted it was a piece of my life which was over.  Until now.

Apparently the comedy team which did MST3K enjoyed it so much that they have continued after the show was cancelled.  But now, they're not worrying about broadcast rights of the movies involved.  They created audio tracks which you can play along with your favourite blockbuster movies.

We bought their audio track for Independence Day.  And laughed ourselves silly.

An example:

Commentary Guy 1: You can't make this stuff up.

Commentary Guy 2: Well, you can.  But you shouldn't.

So for all the geeks out there looking for a little at-home entertainment, check out rifftrax.

Front Porch vs Backyard

I was sitting on my lawn chair, watching my boys play on the sidewalk the other day, when a passerby grew irritated, asking me why I let my children play out front.  When I had no better answer than: because they like it, the passerby sneered in annoyance and told me to put them in the backyard since "that's what it's there for."

Aside from shock at someone actually sneering outside of a comic book villain, I was surprised that someone took umbrage.  We've played out front for years.  The kids are relatively good about not getting in people's way.  As is always the case, I didn't think of a truly witty response until well after the opportunity had passed, so I will now present my argument here on why the front porch is to be preferred to the backyard.

To be fair, what first started me thinking about this was a speech in JMS's comic series Rising Stars in which a superhero pleads with the nation to reclaim their front porches, to get to know their neighbours, to become fixtures of the neighbourhood once again.

Sitting up front does let us be a part of the neighbourhood.  Since we started, I know who lives around us much better than I did before we had children.  I know that the guy three doors down is very protective about his car and thus have trained Alex and Nathan not to go anywhere near it.  I recognize the children in the houses around us because I see them walking home from school.  I even figured out when a neighbour had a houseguest because I saw someone going into the house and knew it wasn't the regular person who lived there.

I can be pretty confident now that I can pick out someone who isn't usually in the neighbourhood, letting me keep an eye on any suspicious situations.  I know which neighbours are likely to have problems with the boys and can make sure my kids don't make themselves targets.

Even better, a large number of people in the neighbourhood know Alex and Nathan and thus aren't likely to freak out if one of the boys tries to play in their backyard or tries to dash inside their house with other kids (incidents which have actually happened).  If the boys wander off, I have a better chance of someone recognizing them and realizing they shouldn't be out alone.

The backyard is a place to be invisible and private and thus has it's own advantages.  But I think we've grown a little too accustomed to the illusion of privacy and isolation.  We're starting to have the expectation of privacy in public areas, which is ridiculous.

So I'm going to stick with my front porch. 

Heck, maybe I'll even switch out my lawn chair for a swing.

Back to the Plotboard

I have not done much writing through August.  In fact, other than this blog, I've done nothing.

I've thought about ideas and jotted down some new story outlines.  But I haven't made any progress in writing Revelations, which I had initially hoped to have finished by June.

I'm trying to think of this as a temporary setback rather than evidence I don't really have the chops to be a professional author.  But there are little doubts niggling in my mind.

Now that the boys are back at school, it's time to recommit to writing.  I have the time and if I can avoid the lure of crafting and TV, I can get the stories growing in my brain onto paper before they burst out.

It's time to get serious again.  Butt in chair and hands on keyboard.

An Obvious Revelation ... And the Van Came Today

First of all, the van came today and I received an apology for the difficulties.  I'm still irritated but willing to move on.

For now.

On to my completely obvious revelation, one of those moments which hit you profoundly but sounds silly and obvious when you try to explain it to anyone else.

I was waiting for Nathan to come out from school and I remembered my own Grade 1 days.  I remembered learning to print and write cursive in special workbooks.  I remember listening to stories on the carpet and how itchy the darn thing was whenever I wore shorts or a skirt.  I remember saving up helper points for being a good helper in the classroom so that I could get a fake yellow rose with a black velvet ribbon from the prize board.  I remember staring at it week after week and hoping that no one else would choose it.  I remember that another kid asked to look at it on the way home and I let them and they never gave it back.  I remember crying about it as if my heart was broken, which it was.

As I'm enjoying this Good Times Stroll through Memory Lane, it hits me.

Nathan is going to have memories like that.  Memories that I won't share with him.  Memories of his own unique life.

He has become the protagonist of his own life rather than an adjunct of mine. (Hey, they refer to it as "mother and baby" for a reason.  Mom comes first.)

It was one of those moments where it hits me on a gut level that he is his own unique persona, an unprecedented mix of personality and predisposition waiting to be stirred by experience.  There has never been one of him before and now here he is, exploring his life.

It made me sad and proud and happy and awed and a whole grab bag of other emotion fragments.

In some ways, Alex's lack of independence has sheltered me from such a revelation with him.  He and I are still very closely tied together but Nathan is stepping free from my immediate orbit.

He still has a long way to go.  Many more moments to share and savour.  I'll have to hold them close in my memory because sooner or later, they will become exceptionally rare.

But for now, I still get to tuck him into bed and sing the soft kitty song.  And that's pretty good.

More Transport Glitches

Despite assurances, once again the van did not show up in the morning.

And having finally talked to the transport company, I'm not particularly sanguine about tomorrow morning either.

The transport company says the afternoon driver will also be coming in the morning.

The driver says he has other commitments and couldn't, even if he wanted to.  Which he doesn't.

I have a rather large issue with this.  If the driver is leaving the company with the impression that he will do it and then just isn't showing up, that should be grounds for a firing, in my opinion.  If that is the case, I wouldn't trust him to ever show up.  However, if the company knows he isn't going to do it and isn't telling the parents that they're on their own, that makes me even madder. 

I don't know what the situation is but only the first day is dismissible as an "honest mistake" in my opinion.  After that, it is literally their job to figure it out and get it done.

As you can tell, I'm colossally miffed about the situation.  And the company will definitely be getting more calls from me in the future.

First Day Glitches

Alex gets specialized transport to and from school.  The company has not been great about keeping us updated as to changes so we weren't particularly surprised when we didn't hear from them confirming that Alex was to be picked up.  We had confirmed it through the school, so we were fairly comfortable.

Since we didn't have an exact time, Alex and I went outside to wait at 9 am.  (Last year the van came between 9:10 and 9:15 most days.) 

9:15 came and went.  No van.

Okay, not a surprise.  After all, it's the first day.  Probably a new driver who doesn't know the routes, parents all wanting to have a quick chat.

9:30 came and went.  No van.

Now I'm moving from polite understanding into irritation.  The company has our contact information.  The least they could do is call to let us know they were running this late.

9:31: Dave thinks he spots the van going the opposite way up the street.  Ahh, we tell ourselves, they've gone to pick up someone else nearby and then they'll swing round and get Alex.

9:40, still no van.

I decide to call the school and lo and behold, we discover that of the 4 vans who should be transporting students today, 3 of them never showed up.  That's right.  75% of the transportation a no show without a single call to families.

Dave drove Alex to school so that I could get on with starting my work day.

I try contacting the company to make sure Alex is on their transport list.  After an hour on hold, I hang up.  The school told me they would look into it but I want to make sure I know what's going on.

As we come round to afternoon, I suddenly realize I've got no idea whether or not a van will be available to transport Alex home.  Now I have to try again.  No answer at the transport company and leaving messages at the school.

We start to come down to the wire.  Any other day, I would simply plan to drive down to get Alex and then race like mad to get to Nathan's school in time to pick him up.  But this is the first day.  No one is going to be on time and there's no margin for delays.

I decide it's time to commit to Plan B.  Arrange for someone else to pick up Alex while I pick up Nathan.  I've found a willing volunteer and call the school to leave a message about the pick up.

Someone answers this time and tells me the vans will all be there this afternoon.

Whew.  I think.  Except for the nagging wondering about whether or not this will actually happen.  But even if it doesn't, they'll hold Alex until I can get there with Nathan.

It could have been a lot worse.  But it also could have been a heck of a lot better.

Tonight's the Night

The final evening before school starts again.

I've checked over the backpacks.  I've packed the school supplies.  We've got a variety of lunch materials ready to go.

And I'm still nervous.

Will Nathan have trouble leaving the playground to line up with everyone else?  How will Alex cope with his new classmates and higher expectations?

There are all sorts of things I wish I could supervise myself but this is part of letting go.  I can't run their lives and I have to trust the school system (which for a control freak like me is a challenge). 

In a few weeks, we'll be settled into the new routine and things will be running smoothly (I hope).  But until then, I can't help but worry about all the things which could go wrong.

I believe it's actually one of my job requirements in the Parenting Contract.  Section 5, subsection C, paragraph ii. 

Thou shalt do everything you can and then thou shalt worry.

But it will be fine.

Unless it won't.

Mixed Feelings For School Toileting

We had a meeting last week with Alex's new teacher and she said she wants to concentrate on getting him reliably toilet trained this year.  Ever since, I've been struggling with mixed feelings.

It would be a huge relief if he could be trusted to go to the bathroom on his own.  I keep telling myself that it is my pride which is insulted by the idea that someone else could accomplish this but I don't think that's it.

I have struggled with toilet training for over six years.  I was breezily assured by the professionals in his behaviour program that they had never seen an autistic child take more than a few months to become completely toilet trained, provided they had full parental support.  (To contrast for those that don't know, most neurotypical children can be toilet-trained within a few days.)  This seemed like a reasonable claim and, hey, they were the professionals.  We rolled up our sleeves and prepared to work.

Two years later, despite complete compliance with their program, he was still not trained.  They admitted their bafflement but held off from implying it was our fault.  (I've always wondered if they changed their assurances or if we were lumped in with unsupportive parents.)

I've taken Alex to specialists and we know that there is no physical reason for his lack of control.  Indeed, when it is important to him, he often displays complete control.  But the rest of the time, he is simply not interested. 

I've admittedly been in a holding pattern with Alex over the last year while I concentrated on my other son.  Maybe my resistance is guilt over that.  No one likes to wonder if they stopped short of the finish line to rest.

But again, I don't think so.  Looking at our actions over the last six years, I think we have explored every viable option and complied with the treatment plans.  Meanwhile, we've also installed a sprayer on our toilet to deal with the daily flow of soiled underwear.

I think I'm angry about a system which has left me hanging in the wind.  I angrily wonder how many of the specialists who encouraged us to "just keep trying" would cope with an endless stream of accidents to be cleaned from floors, furniture and clothing.

I'm trying not to prejudge.  The school has done wonders with getting Alex to eat solid food, something I would have firmly put on the not-bloody-likely spectrum.  And if he's finally ready, then they might have success. 

All I know for sure is that there is a limit to how much of this any person can reasonably ask anyone to endure with a polite, supportive mask so that negative associations don't happen.  I'm going to need more than "if we're consistent and don't put him in diapers, he'll toilet train himself" because that ship has sunk for six years.