Blood On the Walls

I don't know if other people have to deal with this, but when Alex gets a cut, he likes to "paint" with the blood.  He'll pick it open again and again.

He managed to cut himself headbanging early this week.  (Fun fact, it only takes one pound of pressure per square inch to break skin, according to Joss Whedon.)  Now I have little patterns (arranged like the five dots on a dice) all over the house. 

These are the days when the fact that I watch so many police procedural dramas is bad.  I'm looking at it going, this would really mess up a crime scene investigation.  The walls would just light up under Luminol.  (It's weird, I know, but these are the things which go through my mind.)

There's nothing I can do to stop it.  He gets an inherent reward from the painting.  I clean them off as quickly as I can while trying not to pay attention to it.  But it doesn't really make a difference.  This habit of his has created a lot of scar tissue, particularly on his forehead. 

All I can do is try to keep the wound and my walls clean.

Private vs Public Services

Let me start by saying that I'm a big believer in public services.  I think it borders on criminal to privatize things like health care, schools, police, the military or other services which are necessary but not profitable if done correctly.

This is my basic argument: if a society has a two-tier system with a publicly-funded option and a private-for-pay option, those who can afford to will invariably take the private-for-pay option.  Those people tend to be the ones with the time and income to protest or influence changes in the public system.  Because they are receiving services, they will not see the need to improve the public system.  Invariably, the public system gets worse and worse as resources dry up and the society is left with a distinct class gap of who gets help and who doesn't.

However, I also cannot fault anyone for taking advantage of private services when they are available and needed.

I put both of my children into private therapy to deal with their autism.  I signed up for the public services but I quickly realized the challenges: the intensive program had a two year plus wait time and the other program offered 10 weekly sessions followed by a 3 to 4 month break.  It was too long to wait for the intensive program and the breaks made the other ineffective.

I even understand the limitations.  The publicly funded programs have very limited resources.  They can't add an extra "class" of intensive treatment when demand goes up, so all they can do is extend the waitlist.  (Leading to children who are more entrenched in their behavioural challenges and who take longer to go through, creating a vicious circle of longer and longer waittimes.)  The other program decided not to increase waittimes, but had to stagger serving the children so that it could treat twice as many children with the same number of therapists.  I can't fault them for making the decisions they have.

However, I can fault government policies which have not included autism as a medical condition covered under provincial health plans.  I can fault an attitude which says that it is fine to place families in the position of deciding whether to help their child or keep their home.

I am certain that the public would be outraged if they realized the extent of the problem.  The vast majority of people I've spoken to are under the impression that autism treatment is readily available and covered by the government.  When they discover it is not (and the annual costs), they are horrified.

Personal income should not stand as the deciding factor in whether or not someone receives the help they need.  We don't accept it in a court of law, in schooling, in being protected or even in garbage pickup.  Surely autism is as worthy of aid as any of those issues.

Nathan's First Fan-Fic

This weekend Nathan came home with the "Writing Briefcase" and the task of writing a four to five page book, either a short story or a non-fiction book.

Nathan decided to write a short story about what happened with Wyldstyle and Emmet after the LEGO movie.  He decided they would be bored and miss having adventures, until their friend Batman comes to visit.

The story had to be illustrated as well.  Dave and Nathan had a lot of fun constructing a set and taking pictures to illustrate the story.

I'm pretty proud of Nathan's first official venture into fan-fiction.  He's imaginative and creative and I hope he's learned that he doesn't have to wait for other people to come up with the stories he's interested in.  He figured out what would happen in the story and posed the pictures all by himself. 

Transition Tantrums

We've known for awhile that Nathan has trouble with transitions.  He needs a two minute warning before switching tasks or activities.  He also has a lot of trouble with demands (even basic replying to a "hello") while he's in the middle of a transitional activity, such as coming home from school or tidying up before getting screen time. 

However, we've also discovered that we have to be careful when we ask him about things he'd like to do.  Stuff he would normally be excited about (seeing his grandparents, going on a playdate) will be met with rigid resistance if asked in the wrong time.  A simple question like "Are you hungry for lunch?" can induce a toy-throwing explosive tantrum if it interrupts his mental process.

I've been trying to compensate for this by using the 2 minute technique for interruptions.  I tell him that I have a question for him and will ask in two minutes, then he can play some more.  In two minutes, I have him pause his game (I've noticed the tantrums are especially bad if I interrupt screen time), wait until he's calmed down (usually 10-15 seconds) and then I ask the question.  If he starts to whine or evade, I remind him that he needs to answer me before he can play more.

This technique works for questions like what he wants for lunch or checking to make sure a task has been done.  But it won't work for asking if he wants to do an activity.  Because whatever he's doing in the moment will win out over any future option, no matter how enticing.  For these, I've had to find moments where he's not particularly engaged in something, draw him out, give him time to collect his thoughts and then ask about it.  And I have to be prepared, just because he's agreed to do something, it doesn't mean he'll do it without a tantrum when the time comes.

We're limited screentime as much as possible to try and avoid tantrums but we can't get rid of it entirely.  It gets exhausting to say yes to screentime when I know that getting him off the computer or iPad or Xbox will be a fight.  I'm trying to use an impartial timer more and more but he tends to be so caught up in what he's doing that he misses the sound of it going off.

I'll find a way.  Meanwhile, I work on reminding him that tantrums are not an acceptable way to express feelings and open negotiations. 

If only more people had figured that out in life. 

A Taste of the Old Days

Lately, Alex is determined to get into everything.  I go to the washroom and discover he has gone into the cupboards to eat half a bag of marshmallows.  I go into the kitchen to start the microwave and he steals the therapist's keys and runs into the basement to open up the locked room of toys.  I'm helping Nathan with his homework and Alex is upstairs dumping out laundry and crawling into the washer to play Oscar the Grouch.

Predicting what he's focused on is almost impossible.  One day it will be the washer, the next it could be pulling all the DVDs out of their cases and spreading them on the floor.  I leave him alone and he could go upstairs to start pulling apart his dresser or he could dash outside to watch the buses.

This is how my life used to be for the years between two and seven.  I had to have a second person in the house at all times or else I couldn't feed Nathan or cook supper or even go to the bathroom.  I paid two university students to be at my house from the time Dave left for work until he came home, except for when Alex was at therapy or at school.  (We usually only had one at a time in the house but I needed two in order to have complete coverage.)

Gradually, through a combination of therapy and medication, Alex started to calm down.  He started to understand consequences for his behaviour.  Some things still fell under the level of compulsion and he was going to do them no matter what.  But we started being able to trust him more.

The last week has been a taste of what it used to be like.  I'd forgotten how exhausting it was.  It's draining, leaving me feeling numb until panic ignites as I hear a clanging and realize I haven't been paying attention for the last five minutes and Alex is off somewhere doing something he shouldn't.  I'm hoping that it's only a phase and we'll go back to normal as the routine stabilizes again.  (I did call the doctor to double check on his medication level and that is still within the range for his height and weight.)

As exhausted as I am, I still feel grateful that things have improved so much.  If nothing else, this is a visceral reminder of how bad things used to be and how bad they still could be.

Alex Toileting Success!

We recently switched Alex's behaviour program for toileting.  Instead of earning a reward for sitting on the toilet, he had to do 5 BMs in the toilet.

The behavioural therapist explained that this was a big jump but Alex has surprised her so many times in the past that she wanted to see if he could do it.  If he couldn't, we would revise the goals and go forward.

I agreed but, in my head, I was revising the goals and moving forward.

But Alex has surprised me.  Yesterday he did not one but two BMs in the toilet!

My feelings are actually surprisingly mixed.  On the one hand, proud of him, but on the other, I don't really want to let myself feel any hope because I don't want to deal with the crash of disappointment.  It's frightening to move from the stability of "it's never going to happen" to the uncertainty of "it might". 

I've heard of this phenomenon before.  People who have been in truly horrible situations (like concentration camps or being tortured) have trouble adjusting to being released.  Their day to day was undeniably horrific before, but it was predictable and understood.  The uncertainty releases all sorts of anxiety.

Now, obviously, dealing with toileting accidents is in no way comparable to the Nazis or torture.  But I'll have to take some time to get used to the idea that perhaps I might not have to be buying bulk diapers at Costco for the rest of my life.

Alex Loses His Bus Tokens

Alex has been earning tokens for bus rides by not being aggressive in therapy.  If he doesn't get a time out, he earns a token.  Until this week, if he earned 3 tokens, he got a bus ride.

Now he has to earn 5 tokens.  And he also has to earn them all in a row.

We had noticed a pattern.  Alex would have no trouble earning his bus ride but then the day after the ride, he'd have a burst of aggression.  It was like he saved it all up and released it on day four.  The behavioural specialist wanted to see if he could contain himself for longer so she upped the ante for the reward.

Yesterday was day four and yesterday was a difficult day with lots of opposition and eventually, a time out.  Interestingly, Alex didn't seem that upset at losing his bus tokens.  After the time out, he told the therapist "Lose the tokens.  Try again."  He was much more cheerful and relaxed after the time out as well.

It'll be interesting to see if the pattern continues. 

Why I'll Miss Target

I was really surprised this week to discover that Target is shutting down all their Canadian stores.  Granted, the one I go to was rarely busy but it was also located in an out of the way mall.  (I go there specifically because it's not busy.)

Target made some mistakes.  They clearly overextended themselves and had supply problems.  They didn't have the bargain basement prices of the US chain.

But I'm going to miss them.

The biggest reason is the shopping experience.  They didn't have ambient music in the store.  Which meant that I could take Alex without him getting overwhelmed by the noise.  Unlike a store whose name rhymes with Stall-Mart, the Target store wasn't crammed with merchandise like passengers in a discount airline, there was enough room to maneuver without bumping into people or knocking down displays.  And they had a much better selection of boys' clothes in my kids' age ranges.

The merchandise was a little more expensive than Wal-Mart but I found it was of much higher quality.  Example: I bought a package of socks at Wal-Mart and most of them developed holes the first day I wore them.  I got a similarly priced package at Target and they lasted several months.  I don't mind paying more if I know it's not going to fall apart at the first opportunity.

I'll be honest and say I've always hated shopping at Wal-Mart.  It's crowded even when the store is deserted, the staff are overly aggressive in pushing deals and other programs and from the stories I've heard from those who have worked there, they don't treat their employees particularly well.  I've always tried to go with the alternatives when possible.

Now it looks like Wal-Mart will be the only option for basic clothes and such.  Which isn't going to encourage them to improve anything.

Alex's Imitation Game

Sadly, this is not an announcement that my son has created artificial intelligence. 

A few years ago, we had a problem where Alex wanted to recreate a particular scene from Elmo's World where the hapless Mr. Noodle is learning to wash his hands.  He washes his feet and his elbows but can't quite seem to figure out where the hands are.  Alex would go upstairs, start the water running in the sink and recreate this scene over and over (splashing water all over the floor to the point where it started dripping down the ventilation grate).

He would sneak away to do this whenever he got a minute to himself.  You'd take your eyes off him for ten seconds and he'd be upstairs doing it.

We had to institute a rule that Alex couldn't go upstairs unaccompanied.  It took about six months to break the habit.  He still plays the game periodically but it's not an obsession anymore.

Now we have a new imitation problem.  Alex is climbing into the washing machine to pretend to be Oscar the Grouch.  He's always been fascinated by the washer.  It beeps and Mommy gets upset when you press the buttons. 

I've found him in it at least once a day for the last four days.  I tried leaving wet laundry inside to discourage him.  Alex cheerfully dumped it all on the basket (with the clean, dry laundry, might I add).  There's no way to seal the laundry area without installing doors (which we might well do).  I think we're going to have to go back to no upstairs without escort again.

Why It Feels Worse When Things Go Better

We met with the behavioural specialist last week and she had a very useful piece of advice for us.  I was commenting that I was feeling worn out and discouraged, even though by all objective measures, things are improved almost beyond recognition.  It's now possible to take Alex and Nathan out with only one adult because Alex will now follow verbal commands and is less likely to bolt.  He's cooperating much more (without a standard complaint before cooperating).  He's making great strides in toileting with the therapists.

She explained that feeling discouraged is actually a positive sign.  When things are consistently bad, people aren't discouraged.  They don't expect anything better, they just hunker and down and cope with it.  They develop a kind of emotional callous to keep from getting upset.

When things start to improve, parents can find themselves feeling worse than they did when things were awful.  Because now they have hope and expectations. 

It makes me feel better about the situation.  I was being hard on myself, telling myself I should be happy and grateful instead of discouraged.  Now I can be easier, knowing this is part of the emotional process.

Frustrations and Delays

I mentioned we were all sick over the Christmas holidays, having to cancel a number of family get togethers.  Unfortunately, Dave has been sick for the last week and a half, further postponing any attempt at rescheduling.

It's been really exhausting trying to get everything done.  The kids have been tired and worried (and more inclined to snap at us and each other).  Dave has been sleeping through most of the days.  And I've been trying to cope with everything, including getting the final editing steps done for my novel. 

I found out today that Dave has not talked to his father about rescheduling the Christmas get-together.  At all.  I feel guilty about that, leaving his dad with the impression that we don't care if we see him.  (If he's reading this, we do!  We want to see you!) 

I'll have to give him a call today and sort things out. 

When To Tell A Child About Their Diagnosis

I was discussing this with a few other parents of children with autism: When did you tell your child they had autism?  The answers surprised me, so I thought I would share them.

I told my children when they were very little, right after they were diagnosed.  2 and a half for Alex and 21 months for Nathan.  So they probably don't remember a time when they didn't know they had autism.  We've used the diagnosis in any number of explanations: why they get frustrated learning new things, why it feels frightening to try something new, why they get upset during transitions.

We've had a couple of challenges with our system.  Nathan is starting to get to the point where he challenges us that he shouldn't have to do something because of his diagnosis.  (Which lets us trot out the parental lesson: just because something is difficult doesn't mean it's not worth trying.)  He also asks why the standards for Alex are different than for him if they both have autism, which led to us trying to explain the concept of a spectrum.  And Nathan also worries that he's going to get worse, which we've tried to reassure him won't happen.

Another family recently told their eleven year old that he had autism.  The child was undergoing testing and became suspicious about it.  He wouldn't accept their excuses until they told him the truth.  He was very shocked and upset that they hadn't told him.  His mother told me that she thinks he'll be relieved once he has time to process it.  She chose not to tell him because she didn't want him to feel labeled or restricted.  It's only recently that he became aware of a gap between him and his peers and so she was planning to tell him soon and had asked for professional help on how best to explain it.

A third family has an adult with autism (25 years old) and doesn't want him to ever be informed of his diagnosis.  They have managed things from behind the scenes for years but don't want him to feel restricted or different from his peers.  They continue to have him undergo intensive therapy to deal with his behaviours and challenges in the hopes that he will become effectively normal and not have to be told.

My husband found out he had Aspergers in his forties and once he got past the initial denial and shock, he was relieved.  It explained why he thought differently from other people and why things which were simple and intuitive to them remained complete mysteries to him.  He said he doesn't know how he would have felt if his parents had known and chosen not to tell him.  He remembers being horribly depressed as a teenager and young adult because he knew something was wrong but he couldn't understand what.

Would I have told Nathan he had autism if we hadn't had Alex?  I don't know.  There was no hiding Alex's autism.  It's quite severe and is something we deal with constantly.  When Nathan was diagnosed, I had no idea how severe he might be and so I was honest with him.  I told him the therapists were coming to play with him to help his brain to grow and learn because he had a special brain and needed special teachers.  I had no idea how much he understood.  If I had known he was going to be relatively mild, would I have told him?  I might have decided not to, so that he wouldn't feel isolated.  But I'm glad it's not something I have to have a Talk with him about.

More Thoughts on Why Learning Physical Techniques Works

I posted earlier on the debate for teaching parents physical techniques for dealing with their child's tantrums.  This weekend, I helped at a workshop and I realized I missed the most critical point of all.

Fear.

When a child reaches the point of physical meltdown and begins to tantrum or attack, parents are left pretty much helpless.  The child continues to use physical attacks because they work.  The family gets held hostage by the threat of violence.  It's hard to follow through on a demand when you know there's a chance it could erupt in punches and kicks.

If the parents know how to avoid getting injured and how to deal with the attacks, then that fear goes away.  Even if the techniques aren't 100% effective (no technique will work in all situations), the dynamic changes.  No longer is this a no-way-out situation. 

Now there's confidence and tools to handle the situation.

So I'm glad we made it work and I'm hoping we can host more workshops in the future.

The Imitation Game - Benedict Cumberbatch's Portrayal of Autism

We went to see The Imitation Game this week, starring Benedict Cumberbatch as Alan Turing (inventor of the computer and the guy credited with cracking the unbreakable Nazi Engima code).

I know very little about Alan Turing.  Really, only that he is the one who created the Turing test, which is a test for genuine artificial intelligence.  So I have no idea how accurate the film is in terms of portraying his life.

But The Imitation Game portrays Turing as autistic.  And Cumberbatch does a fantastic job in that portrayal.  There is a brilliant scene at the beginning where Turing is interviewing for a job with the British military's codebreaking team.  I'm paraphrasing here but I think I give the gist of the scene:

Colonel: So you want to work for Queen and country?

Turing: No.  Not particularly.

Colonel: Then you care about the war, about saving lives?

Turing: Oh, no.  All that politics, it's quite dull.

Colonel: Mr. Turing, I believe you've set the record for the shortest job interview in history.

It's brilliant because Turing is literally answering the Colonel's questions without any comprehension of the larger meaning.  Neurotypical people would answer that they wanted to serve their country, even if they were mainly focused on the chance to break the puzzle of the Enigma code.  Cumberbatch plays it beautifully, slightly confused and very earnest.  He appears to be genuinely unaware of what he's doing wrong.

Later in the film we have a flashback to Turing as a child and another child is explaining what codes are to him.  That they are a way of saying something openly such that only the intended person understands what is meant.  Turing replies that all talking is like that, that people always mean something different than the words they use.  And he can never figure it out.

The film is very well done and will definitely be added to our collection.

Princess Bride and Autism

I found this awesome list of 17 Things The Princess Bride Taught Me About Autism and I had to share it because I love both The Princess Bride and my boys.  :)

A few thoughts on some of my favourites:

1. Affection doesn't have to mean saying I love you. 

In the movie, "as you wish" means "I love you", letting Wesley express his love for Buttercup by acquiescing to her unreasonable demands.  I often find myself having to follow through with demands that I see as "unreasonable" from my boys. (Do you really need to have your pasta served in the white bowl with the blue rim instead of the gray rim?)  But because I love them, I do it anyway.  Because making their lives a little bit more tolerable or seeing the smiles on their faces makes up for my inconvenience.


3. Having a target will help you stay focused.

The list talks about Inigo's search for the 6 fingered man who killed his father.  How he prioritized, worked out which goals he could tackle and then pursued them with everything he's got.  I would also add: be unbelievably stubborn.  Inigo pursued revenge for 20 years.  I can tackle tying shoes over a few months.


4. You rush a miracle man, you get rotten miracles.

Trust the experts you're working with (particularly if one of them is Billy Crystal).  Anyone promising instant results is lying.  Treating autism takes time (just like bringing someone back from the mostly dead) but the long term results can be just as amazing.


6.  Never start a land war in Asia.

Excellent advice that I use in my own life almost daily.  One could also reframe it as "Don't take away the iPad from a kid on the verge of meltdown."


10.  You may already have a wheelbarrow.

You might also have a Holocaust cloak.  Figuring out how to use what you have creatively is three quarters of the battle.  Sometimes something you thought was useless can be the key to unlocking everything.  Like the dad in Life, Animated who used his son's echolalic Disney quotes to break the communication barrier.


12.  Sometimes words don't mean what you think they mean.

"Dancing Pencils" in Alex-speak translates to "Madonna concert" in English.  I think the example speaks for itself.


I would add a few of my own extrapolated lessons:

Life is pain, Highness.  Anyone who says differently is selling something.

Life is pain.  It's also ecstatic, horrible, boring, thrilling and every other adjective you can throw at someone.  Accept the pain but remember the joy.  Buttercup was willing to throw herself down a steep-sided ravine on the barest chance that the Man In Black was Wesley.  One has to take chances in order to get anywhere.  But remember that anyone promising a smooth ride is selling something, guaranteed.


Chocolate coating makes it go down easier.

In life as in magic pills, a little sweetness makes everything easier.  Even when I'm so frustrated I'm ready to scream, I try to remember to smile and be pleasant.  And when there are days I am in dire need of a vacation, chocolate has always been my drug of choice.
 

Back to Basics for Toileting

In the fall, I thought I had it all figured out but as time went on, it became clear that Nathan had not learned the lessons I wanted him to.

So we've had to go back to basics.  Our behaviour therapist suggested we focus exclusively on the goal of dry pants rather than lack of accidents.  She also suggested we get rid of the iPad in the bathroom, since that had linked going to the bathroom with watching videos.  (That was a problem when he used the iPad or computer outside of the bathroom.)

Since he is likely to go while watching TV or playing on the computer, that's where we focused our efforts.  Every five minutes, he has to stop and report on whether or not he has a clean bum.  There's no punishment for an accident but he has to stop and go get cleaned up and help with putting the dirty wipes in the garbage.  If he is clean, he gets a Smartie and we continue.

It's time consuming.  It means I have to be right there whenever he's playing and constantly running a timer.  Thus far, success has been intermittent but he is telling us right away when there's been an accident which makes cleanup easier.
 
I hope this will work but I expect it will be a long time before I know.

Nathan Getting Into Alex's Behaviour Program

As part of getting Alex to follow directions without complaining, we're using a clicker.  Each time he follows a direction without protest, he gets a click.  When he gets 10 clicks, he earns a privilege (usually 20 minutes of screentime).

The downside of this system is that Alex is obsessively tracking how many clicks he has earned and will begin demanding to "earn it" repeatedly and loudly.  On the plus side, it means he is sometimes independently looking for things to do, such as tidying up toys, in order to earn his rewards. 

Nathan is also very interested in Alex's clicker and will ask to see it throughout the day.  He will tell Alex to do something (usually non-sequitur like "sit on the chair") and then demand that Alex earn a click for it.  We're trying to discourage him from giving his brother commands but not discourage him from feeling like a part of the process.  It's a tricky balance and one I'm not doing great at figuring out.

The clicker is proving to be a very versatile tool though.  Because Alex can earn a click anywhere we go, it means we're no longer tied to good behaviour in the house and then in a new world once we go out.  He even does well at understanding that he will have to wait until we get home before he will get his earned prize.

I'm really hopeful that this plan will give us the tools we need to tackle toileting and other issues.

Not Our Best Holiday

Perhaps I was a little overconfident when it came to Christmas.  We had a routine down, one which went relatively smoothly.  This year, the Fates reminded me of why I believe monkey-wrenching with human plans is a divine pastime.

Both boys got sick with a stomach flu.  Alex's hit Christmas Day and Boxing Day but Nathan's lasted from Christmas Eve to Saturday the 27th.  It meant we ended up cancelling nearly everything we had planned. 

Dave skirted the edge of being sick but I managed to avoid it somehow.  (Not sure how, maybe through sheer denial.) 

It was a strange sickness.  They would get stomach cramps and throw up but then be fine and high energy until their next bout.  No fever, no coughing or sneezing, no other symptoms to help figure out what might have caused it.

At least they enjoyed their main gift from Santa: an Xbox One.  We had a debate with Santa over whether or not he should get a Wii or the Xbox.  The Wii has a wider selection of child friendly games and is what most of Nathan's friends have.  But the Xbox is a more sophisticated gaming system and more likely to allow the boys to grow and develop.  Hopefully the content improves as the Xbox 360 is phased out.

Nathan in particular really likes the games.  The LEGO movie video game is his current favourite.  Even Alex is intrigued enough to play, although he generally ignores the game objectives and simply wanders around exploring the landscape.

I'm exhausted after almost a week of interrupted sleep and constant vigilance.  Both boys had to be changed through the night, either from accidents or vomiting.  And Nathan got really scared about what was happening to him.  Most of the time when he's sick, it's only a day or two and then he's better.  This time it kept lingering on and on.  He started to ask me what would happen if he never got better.  I told him that his body was going to fight it and he just needed a little more time.  It took him a few days of feeling better before he would go anywhere without his bucket.

It's not what I would have wanted but at least we got through it.  I think we did relatively well as a family.  But I am definitely looking forward to when school is back in session.