Autism Article Which Made Me Cry

I spotted this article by Carrie Cariello, I Know What Causes Autism, and decided to take a look.  I wasn't sure what I would find.  An anti-vaxxer rant or perhaps a list of the various causes.  I've seen everything from drawing parallels with a condition suffered by C-section foals to chemical exposure to plastic to, well, I don't want to go through them all.  The strawberries were a new one though.

It's pretty clear with even some rudimental googling that we a) have no idea what causes autism and b) we are pretty desperate to blame something other than genetics.  No one wants to think their kid was going to turn out this way no matter what they did.

Parents blame themselves and it would be so much easier if we could blame someone else.  It wasn't my genes, Your Honour, it was that darn leafblower stirring up toxic grass particles.  Personally, I got whiplash from the speed of switching from "Everything is fine, you're just overreacting" to "What did you do to damage your child?".  I got lectures on how my child had autism because of a sin I committed in a previous life, because of my non-organic diet, because I didn't use Baby Einstein, because of vaccines, because I took too much parental leave, because I didn't take enough parental leave.  Everyone had an opinion they were dying to share.

I've been through Cariello's emotional rollercoaster from believing my child is wonderful and should be accepted to believing we need to figure out this autism thing so no family ever has to suffer through it again.  Even as I write this, I'm going back and forth between "searching for environmental causes is ridiculous" to "but if they could find something ..."

Like Cariello, I don't have enough medical training and hubris to say I know what causes autism.  I know what I believe and I know what the scientific evidence suggests, but that will never be definitive enough to knock someone off their pet theory.

I second guess myself.  I wonder what I should be doing differently.  I wonder if I'm doing enough.  I wonder if I'm doing too much.  I want my boys to have all the opportunities in the world but I also don't want to spend their lives pushing them to do things they cannot do and yet I also don't want them to be limited by choices I made about their development.

In the end, I suppose that doesn't make me too different from any other parent.  We're all struggling to try and figure things out, to understand which conflicting expert to follow.  There's no prep-class for parenting (pet ownership and babysitting don't cut it).

Maybe it's just having the safety net removed.  Society and medicine both agree that there is something wrong with my children, something I am being held responsible for fixing. 

To Send or Not To Send (To School)

Yesterday, Nathan stayed home sick.  He had a lovely day of being curled up on the couch watching movies on his iPad (I vetoed him playing Xbox on the basis that if he was too sick to go to school, he was too sick for Xbox).

The trouble is that now he'd like to do it again, except today, he's no longer sick.  Or at least, no longer sick enough to automatically get a pass home.

He's still coughing but no fever and his energy levels have returned. 

Complicating matters is that Dave had to leave early on a work call, so I'm dealing with both boys on my own.  Alex doesn't generally like having to walk Nathan to school, so the thought of dealing with him as well as Nathan throwing a tantrum does not fill me with confidence.

I was hemming and hawing this morning.  On the one hand, it will be easier for me in terms of morning prep if Nathan stays home.  On the other, given his energy level, it's going to make working this morning and Alex's afternoon therapy more difficult.  And realistically, if it wasn't for the lack of support, I probably wouldn't consider letting him stay.

Nathan is not taking the news well.  We've always had a policy with the boys that anything can be negotiated, as long as they are polite and not shouting or tantruming.  However, Nathan immediately began sticking his fingers in his ears and shouting and kicking things when I told him he had to go to school.  (Not exactly the picture of an invalid ... I suppose I should be grateful he's not a better actor.)

This doesn't leave me a lot of room to maneuver.  Hopefully I'll get him calmed down before it's time to leave.  But just in case, I need to start mentally working on plan B.

Financial Planning for Families With Autism with Gail Vaz-Oxlade

Emerging Minds is holding a conference to help families with autism plan for their financial futures.

The conference is on Friday, April 17th from 12:30 to 6pm with three speakers:

Donna Neff, a lawyer and public notary, who will be explaining setting up wills, power of attorney, trusts and estate planning for families whose children have a disability.

Matthieu St.-Denis, a chartered accountant and tax specialist, who will talk about the RDSP program, Henson trusts and how to set up funding through life insurance.

And our keynote speaker, Gail Vaz-Oxlade, author, blogger, TV and radio host.  She'll be talking about her experiences with her autistic son and financial tools families can use to provide for dependent children.  There will be a meet and greet with time to ask Gail a question or purchase her books and get them signed.

If you buy your tickets before March 15th, you'll be entered into a draw for a $ 300 gift basket.

Bedwetting Product

A friend sent me this link for a bedwetting product called "Rip-N-Go".  It's a detachable, washable sheet set that protects your mattress and sheets from bedwetting.

Unfortunately, it wouldn't work for Alex.  Anything that he can get his hands on and remove doesn't last long in our house.  But I could see this being very helpful for children who are less destructive.

The product was created by a local Ottawa mom who was frustrated by having to replace the entire fitted sheet when her baby had a leaky diaper.

Mini-Meltdowns in 3,2,1 ...

Something is definitely bothering Nathan.  Over the last few weeks, he's thrown a number of massive tantrums. (Rip the room apart, crying and screaming for over an hour, hitting and kicking anyone who comes close.)

Most of these tantrums have been triggered by us making a request, him goofing around trying to get a laugh and us getting frustrated with him.

Anger and frustration usually come out of a violation of expectations.  I've found this useful for figuring out some of Alex's triggers: he expects that if he bangs his head multiple times, he'll get a reaction and he gets more and more upset if he doesn't. 

With Nathan, I'm finding this a little harder.  My best guess is that he's getting frustrated that we're not finding him funny and thus letting him get out of or delay a chore or task.  If that is the case, it worries me that he's identifying himself so strongly as "the funny one" since it requires the approval of others to succeed.  Nathan is not good at picking up on social cues that now is not the time to be funny.

I'm also worried about his tendency to punish and threaten himself when he's upset.  It's what I call the "Guess I'll Eat Worms" tactic.  Do something bad to yourself and everyone is supposed to get very upset and then refuse to do anything to upset you again.  Only, that tactic has never worked in this house.  I suppose he may be confusing it with the sympathy he gets when something bad happens to him, but refusing to give him sympathy in those cases is meaner than I'm willing to be.

This morning, he said he was going to lock himself in his room forever and destroy all his things.  He was screaming that I hated him and he was going to make sure I never saw him again.  (All while watching me intently to catch my reaction.)  I made him finish up the task despite the tantrum.  I told him that his words hurt my feelings and made me sad (another thing he has trouble picking up). 

It's unusual to get this many tantrums back to back.  Something is throwing off his equilibrium, be it the cold, the Xbox or his brother (my usual suspect list these days).  I hope we can skate through to the other side without too many bruised feelings.

Back Down the Toileting Rabbit Hole

The therapists have been working on this since September and now it's our turn to take up the program.  Alex still has very limited success on the toilet, but that is mainly because he saves up his BMs for when therapy is over.

Now toileting will continue after therapy.  The first step will be to positively pair me telling him to go to the bathroom and him sitting on the toilet.  So he'll get a small reward just for complying (a marshmallow or gummi bear). 

I'll be taking him every 15 minutes from the time therapy ends until he produces a BM.  Years of experience have told me that I will need a timer to make it happen.

If he produces a BM in the toilet (even if it started in his underwear), then he'll get a big reward: a sticker on his chart (every 5 stickers = ice cream) and unlimited screen time.

Of course, due to his tendency to dribble, I still have to keep interrupting him to do the bathroom checks until I can be certain he's done.

Hopefully this will be the breakthrough we've been hoping for and we'll be able to say goodbye to diapers for good in this household.  (Possibly also to our Costco membership ... without the diapers, it may no longer be worth it.)

It will be a long process.  I'm not expecting any results before summer at the earliest.  But we will keep on going.

Planning Nathan's Social Activities

I tried to come up with a clever title for this one, but I'm running a blank.

For the past few years, we've had Nathan in Beavers with Scouts Canada.  I initially signed him up to give him more social experience outside of school.  Since Beavers runs for 8 months with a weekly meeting and regular weekend activities, I thought it would be a good, consistent option for him.

So far, it's been exactly as I hoped.  It's given him a chance to practice paying attention, waiting his turn and social interactions with his peers.  He's been able to join in the pre-meeting games and the leaders tell me that he does well with the activities.

Next year, Nathan will transition to Cubs, which is more organized and requires more independent action.  They also have more extra-meeting activities. 

This is where my concern comes in.  The reasons it would be good for Nathan still stand (especially since he likes it).  However, the time commitment makes it hard for him to try other activities (such as dance or gymnastics class, or art classes). 

I'm struggling somewhat with the decision.  Is it better to go for consistency or to allow him to explore different facets of his interests?  The City of Ottawa classes go 8 weeks, so that's a lot of schedule changes throughout the year.

I have a few months to make the decision.  Right now, I'm leaning towards giving Cubs a try at least since I think it will be much harder to transition back into Cubs than to transition out if it's not working.

Adding A Personal Administration Day

One of my coworkers recently announced her plans to take a personal administrative day each month.  A day to deal with the banking, when-I-have-time errands and all the other things which generally get shoved aside under the pressures of work and life.

Since she mentioned it, I've been considering doing the same.  I've been struggling since December, trying to keep up with everything.  I'm now juggling two jobs: writing and my administrative work.  (My novel is now available on Amazon.com and Amazon.ca which means I need to fit writing the sequel and promotion into my day.)

I've been having to stay up at night to find extra hours, which is a challenge.  And daily life tasks have been falling by the wayside.  I've been trying to find the time to go to Service Canada to renew my health card for the last six weeks but it's never a good time.  Ditto getting Nathan his passport for our Disney trip.

The tricky part is that if I take a day off, that's a considerable hit on our income, since I would lose the day's pay.  I don't work a lot of hours but even losing a sick day can make a big difference for us.  That's the biggest argument against making the personal administrative day a regular feature.

But I think I'm not going to have a choice soon about biting the bullet and just doing it.  There's too many things piling up and, frankly, I can't afford to drop any of them.

Nathan Quote: Boy Who Cried Wolf

Something amusing to start off the week.

Dave was tickling Nathan this weekend and Nathan (as he usually does) was shouting: "Stop!  Stop!  You're killing me!"  (To be clear, if Dave does stop, Nathan gets upset and wants him to continue.)

In a pause, I asked Nathan if he remembered the story of The Boy Who Cried Wolf.  When his memory proved to be fuzzy on the details, I reminded him of the story and asked him what the lesson was.

Nathan: Don't cry 'wolf' three times.

I tried again, explaining that if you say something which isn't true all the time, then when it is true, no one will believe you.

He looked dubious (and I don't blame him, it wasn't my best explanation).

Later, during another tickling session, Nathan looked right at me and shouted "Stop!  Wolf!  Wolf!"

I think I'll have to mark this one down as a parenting-guidance failure.  Once I stop laughing.

Toileting Success

It's been a difficult week but we're ending on a good note.

Alex achieved his five BMs in the toilet to earn his McDonald's ice cream reward.  And, to make it better, he even succeeded at doing a BM at school when prompted.  This suggests he will be able to generalize his toileting success outside of therapy.

We've been working on this a long time.  A few years ago, my pride might have been hurt if someone else succeeded where I'd failed for so long.  But now, I'm just happy to have a chance at hope.

Parent Teacher Interview Results

It turns out I was worrying too much about whether or not Alex's school would reconsider integration.  They don't think he's quite ready for that but say he's making good progress and things are still on track.

He's doing very well in school, working independently for rewards.  He's listening and even showing signs of self-regulation. 

All of which is better than he's doing at home.

I can understand it.  I've seen any number of studies showing that willpower is a finite resource.  People put through a stressful test of self-restraint tend to overindulge in food or other pleasures afterwards.

Listening is work for Alex.  It clearly takes up a great deal of effort.  When he compares the rewards at school, therapy and home, he's choosing to put his effort into school and therapy.  (Which both also happen to be shorter duration with more frequent reward points.)  Home is safe, where he can relax.  Unfortunately, that makes it more unpleasant and difficult for us.

I'm trying to be patient and understanding but still set down consistent rules and consequences.  Hopefully, things will improve.

His music teacher suggested we consider Sensory Integration Therapy.  We did that before when he was little but he began objecting to it, so we let it phase out.  Maybe it's time for some more deep pressure techniques.

Considering the Implications of the Very Bad Day

We have meetings with Alex's school and our behaviour therapist later this week.  These were arranged over a month ago, so have nothing to do with Alex's bad day last week.  However, I'm wondering if the incident will bring up more concerns.

The school had been talking about a partial integration, allowing Alex to take a class with his neurotypical peers.  Their concerns have been his compliance level and his toileting progress.  He's made good progress on both.  But will the offer be off the table if there are concerns about Alex having violent outbursts?

This is one thing I want to speak with the behavioural therapist about.  She's followed a lot of kids into adulthood and seen the range from independent and high-functioning to group homes to institutionalized.  Alex's violent outbursts are rare, no question.  But the rarity makes dealing with them behaviourally a challenge.

As a society, we don't care too much about how frequently violent outbursts happen.  If someone beats his wife, we don't dismiss it because it only happens once in a while.  If someone gets into a bar fight, we don't say ah well, it only happens once every couple of years.  The level of punishment might be mitigated by such circumstances but we don't dismiss violence easily.  (And we shouldn't.)

This is the question preying on my mind: how will this limit his opportunities and chances for independence? 

And I'll have to wait to find out the answer.

Alexander and the Horrible, No Good, Very Bad Day (personal edition)

To be fair, the day was actually going quite well until around 2pm.  Alex  had to go to the dentist and he was the most cooperative he's ever been.  And since there was another child screaming and throwing things in the other room, that was a huge deal.  We go to CHEO for his appointments, so we often see other kids acting out.

Later as we were leaving, we could see the child throwing another massive tantrum outside the gift shop.  It took ten staff members plus the parents to get the child out.  I had a lot of sympathy for the parents.  Little did I know that later it would be my turn.

Alex had a hard time settling after we got home.  Lots of complaining, lots of throwing things around.  Then, just as he started to settle it, it was time to go get Nathan, which he did not want to do.

He hit me just as we were leaving and then announced "time out" which told me he was attempting to manipulate the situation and avoid having to go.  I told him time out after and took him outside.  He began to hit and kick me on the way up.

When we arrived at Nathan's school, I settled us in an out of the way area close to where I normally pick Nathan up.  I kept Alex in a restraint grip and hoped Nathan would come out quickly.

As a child and his mother were walking in front of us, Alex wiggled free and kicked the child.  I immediately told him "No!" and apologized to the mother, explaining that he had severe autism and was in the middle of a meltdown.

The mother then proceed to scream at me that "monsters" like that should not be allowed in public. 

I lost my temper and shouted back at her that she had no idea what she was talking about and I didn't have any more time to waste on her (I think, I don't remember exactly what I said.  Doubtless it came out somewhat more incoherent than I'd like to remember.)

Recognizing that I was losing it, I turned my back on her.  I didn't trust myself to continue to deal with her.

She kept screaming at me, threatening to call the police, the principal and whoever else she could think of.  She called Alex a "vicious dog" who shouldn't be allowed out.

Two other moms came to my rescue and told her she needed to walk away and leave me alone.  She continued to scream at them for another few minutes before finally leaving.

The whole thing left me ready to cry and shaking.  It didn't help that Alex backhanded Nathan into the snow as soon as he arrived, leaving me to cope with one tantruming child and one crying one.  Eventually I did get us all home and Alex went into timeout.  He continued to act out again and again until we finally put him to bed at 7. (And we could hear him continuing to tantrum until well after 11.)

Now, I don't think I did anything wrong (except the shouting back part, which wasn't ideal).  I did the best I could under the circumstances and I feel no urge to further apologize to the other mother.  As far as I'm concerned, her behaviour was completely unacceptable and overshadows what Alex did.

My biggest concern is wondering whether or not the mother will feel the need to seek me out to finish her say.  However, if she does, this time I won't be distracted by dealing with Alex.  I also don't want her to think Alex isn't coming to the school because I in any way agree with her assessment that he shouldn't be allowed out in public.

These sorts of confrontations happen every few months.  People see Alex as a misbehaving or badly disciplined child and take it upon themselves to correct his behaviour.  (It's one of the big reasons that I want the service dog, as it will be a signal to others that there is something different with him.)  Usually, when I explain he has autism, they get sheepish or embarrassed and withdraw.  This is the second time someone has continued to attack after I explained (and in the first case, the mom was shouting at me in Mandarin and may not have understood my apology - also, Alex was three).

Dave and I have talked this over with our behavioural specialist and we all agree there is no further action to be taken at this time.  The last time Alex had a violent meltdown and attacked another child was in March of last year.  We are dealing with the aggression and the incidents are coming down.  We already have reasonable precautions in place.  We cannot be expected to control everything.

Why Anti-Vaxxers Aren't Likely To Go Away

The measles outbreak at Disneyland has sparked a fresh wave of pleas for people to get their kids vaccinated and a fresh wave of arguments why vaccines don't cause autism.

But I think it's all rather pointless.

The Vaccinate-Anti-Vaxxer divide is starting to look and sound like the abortion debate.  Both sides have passionate advocates, strong views and are effectively playing on entirely different playing fields.  The pro-vaccination camp has reams of scientific research and the not-uncompelling argument that vaccines save lives.  The anti-vaxxers claim that the truth is being hidden by Big Pharma and have anecdote after anecdote from parents.

It's not entirely without precedence for companies to not understand or to hide the negative impacts of their products.  Vioxx, DDT and DES are all examples where catastrophic and deadly side effects were noticed after the product was in common use.

Vaccines aren't in that category.  But I don't think the anti-vaxxing campaigns will ever accept that. 

I have two kids with autism.  While it is certainly an improvement over dead children and I don't have to feel guilt over having caused someone else to lose a child because I do vaccinate my children, I can understand parents who are angry and desperate to find something to blame.  I can even understand parents who are worried about their child getting autism and want to increase the odds against it.

These aren't bad or ignorant people who are maliciously putting their own children above the health and welfare of everyone else.  They are concerned and have been inundated with plausible-sounding "facts" from all sides.

I think it is a shame that there seems to be a real lack of critical thinking and information analysis among the general population.  Critical thinking often seems to be confused with not believing whoever has the most education or money. 

We need to stop assuming that the other side is lying to us.  We need to sit down and go through the arguments logically, step by step, and find real answers.

Then maybe we can meet the eyes of those who have lost children to entirely preventable diseases and find a way to prevent it from ever happening again.

Stopped the Howling

It's taken about three weeks of locking the cats out of our bedroom and switching the morning feed to after the boys go to school, but we finally have stopped the cats from howling to be fed at 5 am.

I will be very glad to have the bedroom door open again.  It's been difficult to sleep with no airflow in the room (plus our room is one of the first stops for the warm air from the furnace which means we have to choose between being uncomfortably warm or the rest of the house being freezing).

It's been a difficult few weeks.  I've been concentrating on getting my book ready to go up for sale and the boys have been frustrated and upset with the cold weather and lack of attention.  There's still a lot of work to do and I'm feeling exhausted with trying to keep up with it all.

Hopefully in the end it will all be worth it.

Let The Disney Magic Begin Again

Last year, we took Alex to Disney.  This fall, it will be Nathan's turn.

I've reserved our holiday package and booked our flights. 

This is an expensive way to have a family vacation, but I think it was the best decision for our family.  Neither boy adapts well to compromise and sadly, Nathan is the one who has to live with disappointment the most often.  Since Alex is more severe, when he approaches meltdown, there can be no negotiation.

This way, Alex got a great vacation where he got to do exactly what he wanted and Nathan will get the same.  Want to go on the rides?  Great!  Want to swim three times a day?  No problem.  Want to live at Disney for the rest of your life?  We all want that but we have to live with the disappointment.

I'm feeling stressed out about the planning again but a different stress than before.  I know more of what to expect which gives me more questions about what might go wrong.  But I also worry that my expectations will end up overshooting reality.  Can it really be as magical as the first time?

I hope so.

An Unpleasant Surprise

This morning, when I went to start a load of laundry, I discovered a large smear in the bottom of the laundry basket.  Inspection revealed that a pair of underwear had been tossed into the basket without being rinsed after a toileting accident.

After several back and forth rounds of recrimination, we have settled on the most likely subject: Alex. 

In a way, it's good if it was him.  It means he had an accident and went to change himself.  Not very effectively, but still progress.

But mostly, I'm just feeling grossed out about it.  It means I'm going to have to start picking through soiled clothing to see if any more "surprises" have been left.  After more than 10 years of cleaning up accidents, I know I can do it.  But it's still gross and I don't like doing it.