Countdown to Disney

We are in the final 30 days of preparation before our Disney trip with Alex.  It's really hitting home now that this is actually going to happen.

I'm disappointed that the Orlando airport has refused to return my calls.  I'd been hoping to set up something in advance to short-cut the line for customs since Alex won't tolerate standing in line.  (Not looking to skip customs, just the lining up part.)  I'll have to deal with it on site.

I'm getting an updated doctor's note which I can use for dealing with lines at customs, airport security and the Disney attractions.  (Most airports will let children with disabilities and their families use the VIP airport security check-in, which is much faster.) 

I'm getting another one to allow us to bring Alex's pureed food onto the plane (counts as a liquid, which is irritating).  That one should also help with the special food accommodations at Disney.  They've promised us to make sure he's got stuff he can eat at the special character meals.  When we hit the 10 day mark, I have to send the doctor's note and a list of what he can eat to them.

We've gotten our luggage tags which will get our luggage on the Magic Express when we arrive in Orlando. 

We've got our passports, including a doctor's note for Alex's explaining about his picture.  (I carry a small file folder of doctor's notes with us whenever we travel.)

I'm meeting with the doctor next week to get a copy of Alex's prescriptions (in case we need it).  I'm also doing the count up to make sure we all have enough of our individual medications to make it through the trip.

Dave is checking on a vacation plan for our cell phones so that we can use them to call and text without being slammed by fees.

I've arranged some special surprises for Nathan for while we're away and he's staying at his grandparents.  He'll be going to Disney with us in 2015 and Alex will get to stay home.

I think I've covered everything.  We're starting to get down to things which can't be done before the last minute, like packing and organizing the paperwork.

I really hope he enjoys this trip.  I hope it's the magical, wonderful experience I've been hoping for him to have.  I think I've done everything in my power to make it so and now the rest is up to luck and to him.

A Feeling Journal

I've been working for awhile on getting Nathan to express his feelings appropriately.  I'm trying something new: a feeling journal.

This isn't something I've read about so I'm feeling things out on my own for this one.

My thought is that I need to encourage Nathan to talk about his feelings when he's calm since it's too hard when he's upset.  As it gets easier, hopefully I can prompt him to use it in crisis times too. 

My therapist has always encouraged me to write my feelings down when they get too overwhelming.  The act of writing is like the act of telling someone else, it gets the thoughts in my head outside my body so they don't keep whirling around and around.

I thought I'd try the same technique with Nathan.  But he hates writing.  Anything fine motor is a real challenge for him.  So I'm using the video camera on the iPad to let him film little "journal entries" using a set formula:

I feel ____ when ....

He's got little cards with 6 feelings on them: happy, scared, sad, frustrated, angry and hurt.  I drew little faces on them with the different expressions.  Cartooning sites are a great help for figuring out the basics.  (Here's one I found helpful.)

If he does an entry for 2 different feelings, he gets 20 minutes of iPad time. 

If he can go the entire day without losing his temper, he gets 30 minutes of computer time.  (We've discovered its harder for him to control his temper if he's using the computer.  We get the same effect with the iPad but on a lesser scale.  TV is even less.)

Right now the entries are simple.  I feel sad when someone tells a bad joke.  I feel frustrated when I can't get my Lego to stay together.  I feel happy when I'm with my family.

I'm supervising to encourage him to journal different experiences.  (He tried to use the bad joke one three times in one day.)

I'm going to make him do at least one entry per day.  When he gets more comfortable, I might encourage him to tell the best and worst part of his day as part of the journal entry but I'll see how this goes first.  We're still in the first week so this could all fall apart after the honeymoon period.

Back to School: Let the Games Begin!

Today the teachers and administrative staff come back after a well-deserved summer off.  So today I start my stalking campaign to get them to talk to me before classes start next week.  Every year I try to arrange things in June before they leave.  Every year I get told I have to wait until August.  Every August, I get told that they have no control about when the teachers come in.  So every August I have to leave my entire week open to accommodate last minute meetings.

Frustrating, but I'm used to it now.

This year there are a couple of key issues for each boy.

Nathan has been having trouble controlling his temper.  Most of the time, it's yelling and sulking, but I need to speak to his teacher to discuss options.  I'd like to set up a system where they report on his behaviour each day and he earns a reward here at home.  I'm also working on figuring out a journaling option with him so he can practice talking about his feelings in an appropriate way.

For Alex, there are two issues: transportation and the helmet.  I need to set up transportation for Alex since he'll be finishing in the middle of the day to continue his behaviour program.  That should be just administration (although I've had some surprises with admin issues which I thought were obvious before) but the helmet is more critical.  The school was using a helmet to eliminate Alex's self-injury behaviour (SIB).  However, what we found was an escalation.

Usually when Alex bangs his head, he does it once.  The school was putting the helmet on after a headbang.  This set up a struggle and escalated the SIB. 

We've gotten the SIBs down significantly over the summer without using a helmet.  I'd like them to take it away so that we don't have an increase.  I expect this will be a bit of a fight but I'm hoping I can prevail.  I do have the comfort of knowing that the staff there really care about Alex and want what's best for him, so if I can explain it properly, I think I have a good chance.

Walking With Dinosaurs: The Arena Show

The family won tickets to the Walking With Dinosaurs Arena Show on the weekend.  Nathan likes dinosaurs and Alex likes the Canadian Tire Centre, so we went ahead with it.  I was braced for something a little hokey and clumsy.  I really enjoyed the original BBC series.  It had some amazing CGI work (realistic feet movement, always a bonus!).  But you can't have CGI quality with a live show.

But you can come pretty darn close.

 

The smaller theropod dinosaurs were done by people in costume. 

 

The larger ones had a base platform that moved with them and I presume several people were inside to control the mechanisms.

 

Nathan loved it and even Alex was entertained (although he got bored during the talky science-y bits).  The show was a little loud (the T-Rex roars shook the seats) but the boys both did well with it.

 

It gets my recommendation for a good family night out.

 

 

Aggression and Indifference

Today I had to pick Nathan up early from camp.  There had been an incident where he hit another camper.  Not acceptable but I was very frustrated to learn that the camp hadn't been giving him the transition warnings I'd asked them to.  He won't be going back.

Incidents like this make me feel very vulnerable.  Alex lost his position in mainstream school and activities because of his aggressiveness.  Today ignited fears that we might be headed down the same road with Nathan.  His aggression is rare but he doesn't hold back once it's unleashed. 

The counselors, in their wisdom, decided Nathan didn't need transition warnings.  This left him edgy and upset and made it more difficult to control himself.  An incident was inevitable.  And the cycle can become self-reinforcing.

Next year, Nathan has the same teacher that had such difficulty with Alex.  She was intimidated by him.  Will she be able to handle Nathan or will we trigger more problems?

I wish to the gods that I knew.  But my confidence in next year is splintering.

Letting the Funny Leak Out

Nathan likes telling jokes (and in the wake of Robin Williams' suicide and a slew of comics telling us how telling jokes is the sign of a damaged psyche, I worry).  However, he doesn't quite understand the subtle difference between a well-delivered punchline and simply shouting out random phrases. 

He sees Daddy get a laugh by shouting out "Interrupting Cow" during a song.  He sees Mommy get a laugh by telling a knock-knock joke.  The Lego Movie got lots of laughs with "Honey, Where Are My Pants?" but he doesn't seem to understand the timing behind it.  Simply shouting "cow" or "pants" or endlessly repeating the same knock-knock joke isn't funny.

I've tried a new tactic: I told him that a joke is only funny twice.  After that, all the funny leaks out.

I'm hoping I can use it as a short-hand to curb the behaviour without having to be mean and telling him to stop.  Before this, he's persisted even in the face of repeated requests to stop and kept going right until irritation shifts into anger.  I hate to hurt his feelings but he's got to figure out when his behaviour is inappropriate.

Bad Start to Camp Today

This is Nathan's last week of camp before school starts again.  As far as we knew, the first day had gone well and he was looking forward to the activities for the rest of the week.

When we got there, one of the counselors asked if anyone had spoken to me yesterday.  Apparently Nathan hit one camper and kicked another one and then spent the rest of the day not participating.

No one said a word to Dave or I about it.

Nathan overheard this and immediately launched into a tantrum, saying he wanted to go home because everyone hated him.  I was really torn.  On the one hand, I wanted to talk to him about the incident and remind him about using his words instead of his hands.  On the other, he wasn't in a place where he could understand that. 

He was still really upset when I left and I spent the day in knots wondering how it was going.  They never called and didn't say anything until today.  That doesn't make me feel good about leaving Nathan in their custody.

Dispatches From the Rabbit Hole

I should have knocked on wood to avoid jinxing myself.  Despite almost two months of success, we've faced a string of recent failures with Nathan's toileting.  Nothing big, but discouraging nonetheless.  We'll have to work on getting him to listen more accurately to his body.

The screens are just too big a distraction.  Once he's earned them, he's not paying attention and if he hasn't completely finished, there will be an accident.

On the other side, our behavioural specialist has told us that it will likely be another month or two before the therapists are ready to support us in a toileting program for Alex.  So I don't have to deal with the two of them at once, which I think would be more than I could handle right now.

Nathan Passed Level 1 Swimming!

After a summer which began with Nathan being unable to go in the water without a life-jacket, he has passed his level 1 swimming.

He's worked really hard at his two weeks of swim camp and we're very proud of him.

Nathan Quote: Screentime Temper Adjustment

I think I've mentioned this before, but Mr. Nathan has been having some challenges with his temper after screentime.  If we have to switch activities or tell him to let his brother have a turn, he gets incredibly angry.  (Which can be a real challenge when we have to get somewhere else to do something.)

I think I've found a partial solution to the problem.

I've started giving him a transition period.  Not only does he get a 5 minute, 2 minute and 1 minute warning but I also make sure there is at least 5 minutes between shutting the iPad or computer down and the next demand on him.

I've also started talking with him before he goes on the computer, warning him if he's only got a short time.  I remind him that he gets angry when he has to turn the screen off.  I tell him that I don't want to have to deal with a tantrum.

Yesterday, we had 10 minutes before leaving for camp and he wanted to go on the computer.

Me: Okay, Nathan.  We only have 5 minutes to play on the computer, is that okay?

Nathan: Yes! (not really listening)

Me: Nathan, listen to me.  Remember yesterday (a big tantrum) when you got upset when I told you to turn the computer off?

Nathan: (suddenly much quieter) Oh, yeah.

Me: I don't want another tantrum today.  Do you think you should still have the computer?

Nathan: Maybe I'll play when I get home.

It's not particularly funny.  But I'm really proud of him.

Do I Dare Go Down the Toileting Rabbit Hole Again?

Nathan has been doing fairly well through the summer.  Earning screen time on a daily basis, a cash prize ($ 1) at the end of the successful week and a surprise toy at the end of 5 successful weeks has reduced the number of accidents down to non-existence.

Now my attention turns to Alex.  Everyone else seems to have such an easy time with keeping him dry.  He barely goes at all during therapy and managed most of his break with his grandparents.  School averaged about an accident a week last year.

But with me he seems to constantly dribble BMs and even when I prompt him to use the washroom, we get puddles.  It makes me wonder, am I just that horrible when it comes to toilet training?  Or is it that he's more comfortable with me, thus reducing the discomfort with having to go.

I ask myself if I'm ready.  Last time I went down this trail, I spent three years cleaning up constant messes and by the end of it, I was so tense and hair-triggered that I felt as if my muscles were capable of vibrating their way through solid matter.  We were averaging between 4 and 10 on a daily basis.  I was running laundry constantly despite having a giant Rubbermaid bin full of spare clothes.  I cleaned bathroom-material out of floor grates, off ceilings, out of toy bins.  I had an open bag to deal with the papertowels from puddle clean up because there was no point sealing it up after every accident.  I had to change clothes a couple times a day because of splashback or other problems.  It was horrible, no other word can describe it.  And everyone seemed very puzzled that I was having such a hard time, after all, he did so well at therapy and at home.  If I just stuck it out a little longer, they were sure it would take care of itself.

I called a halt when I found myself yelling at Alex after yet another accident.  That price wasn't worth it.  And looking back, the therapist we were working with ran out of ideas after the first 18 months.  The second half was purely "just stick with it even though its not working".

It would be so great if Alex could be trusted to go to the washroom when he needed to relieve himself.  It would be amazing if I didn't have to clean up poop anymore after doing it for the last ten years.  To get there, I know I have to go through the transition phase.

Am I ready?  I don't know.  But I need to figure it out quickly.

A Slightly Darker World - Goodbye, Robin

Today, I'd originally planned to tell everyone that registration for the City of Ottawa programs starts tomorrow night.  But that got overshadowed by this morning's news that Robin Williams committed suicide yesterday.

I've been in awe of Robin Williams for my entire life.  My parents thought he was hilarious (and oddly child appropriate, I guess, since I got to see a lot of his work and comedy concerts growing up).  I started off with Mork and Mindy, can recite huge chunks of Good Morning, Vietnam and watched Comic Relief just about every year. 

He seemed like a force of nature, unstoppable and unfathomable.  His mind worked faster than anyone else's that I'd ever seen.  When he came to Inside The Actor's Studio, it was amazing.  I envied everyone who got to be there.  I agreed with Billy Crystal when the man said that he (Billy Crystal) was a pretty funny guy and pretty smart and sometimes he came in and thought he would be able to match Robin.  But instead, Robin just sailed past him, even on an off day.

I cannot recall what book it came from, but there was a description of the rare people in the world who bring their own light wherever they go.  Robin Williams was one of those people.  I feel sad wondering if it was because he felt like he had to be "on" all the time but I think he genuinely loved making people laugh and making them feel just a little bit happier than before.

He was honest about his battles with drugs and alcohol.  There were always hints of the terrifying darkness he felt and the neverending battle he fought against it.  Sometimes it always seems this way.  In order to balance the light, the darkness must be terrible.

In Babylon 5, the Gray Council is described as those who stand between the darkness and the light, between the candle and the star.  I think he was one of those people, but he was standing between his own darkness and the rest of us.  And unfortunately, the darkness claimed him.

So this morning, the world woke up a little darker, without his star to brighten our skies.  It's sad.  It's horrible.  We'll all go on, of course.  But there's no denying the loss to us all.

CIty of Ottawa Registration - August 13th

City of Ottawa starts registering for its fall and winter programs on Wednesday, August 13th at 9pm.

No More Soccer

Tonight was Nathan's last soccer night and I'm making the call: no more.

Dave loved soccer as a kid and was very good at it (still is, comparatively).  He wanted to share it with his kids.

However, the kids, Nathan in particular, do not enjoy soccer.  Nathan gets overwhelmed by the pressure and fearful of making a mistake.  He reacts with defiance and anger, both of which Dave has a hard time handling.  (I find it hard to ignore Alex's repetitive objections, we all have our parental kryptonite.)

The difficulty means that the two of them tend to react off each other and then they're coming home in tears and frustration respectively.

Dave's not particularly pleased with my decision but this is the second year in a row.  I feel we've given it a shot and it's not worth the emotional stress.

It's too bad.  Soccer is one of those almost universal childhood experiences (except in the States). 

Hopefully we can find something else Nathan will enjoy.

Book Review: The Elephant In the Playroom

This weekend I picked up The Elephant in the Playroom: Ordinary Parents Write Intimately and Honestly About the Extraordinary Highs and Heartbreaking Lows of Raising Kids with Special Needs by Denise Brodey.

I usually shun away from these kinds of books because I get very frustrated and depressed reading inspirational stories.  But I skimmed it and saw that it was compiled in short essays by a variety of parents.  I thought: okay, I'll give it a try and if it annoys me, I'll just send it back to the library.

Instead, I was relieved to see stories that match my own.  Where the robot-like-expectations of constant consistency and endless patience are unachievable myths.  Where numbness sets in, blinding me to just how atypical and unpleasant my life can be, until something brings it into devastating awareness.  Where the compliments of others about how "strong" or "amazing" I am only hurt and make me feel more isolated. 

Some of the parents in the book had to make the heart-wrenching choice to send their children away to residential programs to protect themselves and other members of their families.  Some quit their jobs to become full-time therapists, advocates and homeschool teachers.  Some divorced.  Some moved to get access to better programs.  Some needed medication.  All of them sought therapy help for themselves.

Their lives were transformed and not in the traditional butterfly kind of way.  In a loss of a limb kind of way. 

They love their children more than anything.  The actions prove it since there is nothing they will not sacrifice to give their child what he or she needs: even their own preferences, pride and expectations.

As I read it, I wondered what I would have written about, had I been asked.  I could have written about our relative success with Alex's eating.  After 8 years of relentless effort, he's no longer on baby food.  Of course, with his latest tantrum over eating ringing in my ears, I'm not sure I could persuasively call it an unqualified success.

I could write about the ongoing frustration of cleaning up "bathroom-product smears" (one of the mom's euphemisms for BMs).  I could write about the exhaustion which sets in as one hope after another is crushed.  I could write about the horror at feeling jealous about other families' success.

I could write about how Alex still makes me smile and how glad I am that he still seems to be happy in his world.

The frustration is real.  The despair is real.  The moments of joy become all the more poignant for their rarity.

But tonight, I feel a little less alone.  And that helps.

Splitting My Personalities

It's official, I have split off my personalities for my writing and autism.

Hopefully I haven't lost too many people in the transition.

If you'd like to still follow my writing, you can find me at www.jclewis.ca or www.pastthemirror.com. 

This site will stay dedicated to autism, which is why we have the renaming of my blog page to match the puzzle theme.

Nathan Quote: Superheroes

Okay, this one is more on me than Nathan.  We've been having problems where he loses his temper and hits people.  It's rare but happens.

I've been trying to use his love of superheroes as an influence.  Pointing out the difference between good guys and bad guys (Good guys help people and say sorry and bad guys hurt people and don't care about their feelings).  I hit on what I thought would be a brilliant tactic: Good guys don't hit first.  They only hit back after a bad guy hits them.

Yay, I thought to myself, a happy little reconciliation between the violence in comic books and my attempt to use those books as a message for peaceful resolution.

Except I really should have paid more attention.  Because we were watching Avengers Assemble and Transformers and darned if Captain America, Thor, Optimus Prime and Iron Man are all prone to striking first when they have a bad guy in sight.

Nathan: Mommy, the good guys are hitting first.

Mommy: (at a loss for words)  Yeah, I guess they are.

Nathan: You were wrong.

Mommy: Yes, I was.

Nathan: I'll tell Daddy.  He'll be excited.

Study in NY Times about Autism Recovery

When I first saw the title of this New York Times article, The Kids Who Beat Autism, I was skeptical.

However, as I looked through, I was impressed.  A study of 85 children with autism, followed over 20 years and 9% no longer met diagnostic criteria.  That's pretty big (although still a small sampling and needing repetition with a larger group before making sweeping generalizations).  Another group showed 34 children who no longer met criteria, 44 who did and had 34 typically developing peers as a control and comparison group.

Researchers were not able to predict which kids would progress and which ones would not.  They couldn't even predict high and low functioning with any success at the time of diagnosis.  There was a correlation between those who received intensive therapy at an earlier age and progress but it wasn't a guarantee.

I've noticed that most of the "cured" kids whom you see online followed the normal development and regression path, rather than the symptoms from birth path.  Those are the kids who seem to do well on the gluten and casein free diets when combined with ABA therapy.

My boys both showed symptoms from an early age.  We can see the subtle signs in their first birthday videos.  The signs weren't prominent enough for us to realize until later.  So I don't hold out a lot of hope for them to be "cured".  But that doesn't mean they can't live independent and happy lives where they can be productive members of society.  And frankly, if I had to pick, I'd pick that over a cure any day of the week.

A Jab At the Anti-Vaxxers on Black Box

We've been watching the summer series Black Box, which appears to be a cross between House and a soap opera.  I'm not entirely comfortable with the series, not sure if it's the characters or the fact that I've caught them in some medical errors.  Or maybe it's because I started watching at the 8th episode and missed a lot of the setup.

There was one episode recently which caught my attention, the 11th episode, "Emotion".  One of the secondary plots was of a mom who comes in with her seven year old son, who has stopped speaking.  She quickly rattles off how conscientious a parent she is, controlling her son's diet to be all-natural and organic, and how the school is insisting on testing her son but he's just shy and quiet.

The doctor asks if her child is up to date in his vaccinations and the mom says he's never been vaccinated.  When the doctor asks why, mom snaps off "Because I don't want my child to have autism."  As if it's the most obvious answer in the world.

The doctor immediately tells her autism isn't caused by vaccines, which the mom scoffs as a lie of Big Pharma.

By the end of the episode, we learn the child has irreversible progressive brain damage from getting measles at 3.  (A real effect which does happen since the virus can remain active in the body after symptoms disappear.)  The kid is going to die from not being vaccinated.

Of course, most people who don't vaccinate their kids end up killing other people's kids.  Their child has measles and infects an infant too young to have the vaccine.  It's fairly easy to do since measles is contagious for 3 weeks before symptoms appear.  Children under 2 are particularly vulnerable since they've lost the passive protection of their mother's antibodies but haven't received the vaccine yet.  In the developing world, where death rates can be as high as 30%, infants receive a two step vaccine at 6 and 9 months.

Whenever I deal with an anti-vax campaign, I find it sad for two reasons.  One, it's socially irresponsible.  And two, it acts as if a child with autism is worse off than a dead child.  I find both of those presumptions very hard to swallow.