Why I've Been Quiet

First off, I want to apologize to everyone for disappearing without notice.  It's been a very intense few weeks and I honestly became so overwhelmed that everything fell off the to-do list.

I can't go into details right now.  There are a lot of pieces in the air with three major crises happening.  Anything I post about them could end up being a problem, so I'm going to have to wait until things are more resolved before giving an update.

I don't often get this overwhelmed.  Usually, no matter how bad the crisis, I can keep a level head and keep moving.  I may feel angry, upset or frustrated but I still function.  With this set of circumstances, I couldn't do that.  It took everything I had just to get out of bed each day and do the very basic things like make sure the kids got to school.  I've had a lot of crying jags, sleepless nights and gut-wrenching stress.

I'm slowly pulling myself back together but there are a lot of unknowns right now.  And I don't deal well with long-term uncertainty.  But I need to get back to work, get back to running the family and get back to my writing career.  I'm hoping the worst is over now but I suspect there are still a few curveballs waiting to strike. 

Thanks to everyone who sent a note wanting to know if I was okay.  Your kind thoughts are appreciated and mean a lot.

Mini-Vacation

I had a lovely evening last night with two of my best girlfriends.  We've known each other for over 25 years at this point and look forward to knowing each other at least another 25.

We've all had our challenges: physical, emotional and mental, but we've always known that we can count on each other.  As I said last night: we are like scar tissue: no matter how ugly, we are permanent and strong and unerasable.

There are some friends in life that it doesn't matter how long the gap is since you last saw one another, the connection is always there.  I'm very grateful to have that.

More Challenges At School

Alex is still having behaviour problems at school and is now raising the stakes with aggression, as well as self-injury and tantruming.  The teacher has shared that some students are not coming to school due to his behaviour and another is refusing to enter the classroom.  From the hinting, I am getting the impression that they are working up to insisting that Alex stay home.  Or rather, wanting me to volunteer to do it as they are not permitted to refuse Alex access to school.

Dave and I have talked about it as an option.  Allowing the school to continue to push Alex into deteriorating behaviour isn't a win for anyone.  The longer this goes on, the harder it will be to come back from.

But there are other factors to consider.  First and foremost, if we agree, we are setting dangerous precedents both for Alex and the school.  For Alex, he will learn that he can escape an unpreferred situation simply by behaving badly for a persistent period.  For the school, rather than work out any future problems, they will be more inclined to ask us to pull him out again.

Other factor, we can't have Alex simply sitting around doing nothing (or more likely, finding ways to get into trouble).  We would have to set up a homeschooling situation, which means that one of us would need to stop working.  I already know that I have no talents in that area (I only tend to frustrate Alex and myself rather than actually make any progress) and I somehow doubt that losing Dave's salary would be an option.

This has really been a horrible year for him and I'm alternating between being furious and being ready to cry.  At the start of the year, he was doing well enough that there was talk of integrating him with regular classes in the near future.  And now, less than 10 months later, his behaviour is bad enough that they're hinting he needs to leave the autism class.

What's even more frustrating is that we're not seeing similar behaviour issues at home.  There's an upswing in verbal protest and the head-banging has reappeared after almost two years of extinction, but we're not getting the kind of thing they are describing at school.  Which means something is happening at school to either trigger or encourage his behaviour.  I'm not seeing it in the descriptions of what happens, but it's there.  And until we can find it, things are going to continue to get worse.

Improvement in Increments

Yesterday I saw the doctor and my blood pressure is slowly going down.  I'm still tired with low energy reserves but at least I'm moving out of the danger zone.

I have another week and a half of medical leave and another appointment to check on my progress before I go back to work, but it's a good sign.

I'll have to make some changes to ensure that I don't spike right back up again.  But I'm glad to hear that my stress levels haven't inflicted permanent damage yet.

Alex Sent Home From School

Yesterday, I got a call at 9:30 asking me to come and pick up Alex.  Apparently he was having a massive tantrum and they had to evacuate the classroom for everyone's safety.

Alex has been having problems at school over the last two weeks and there have been a few suggestions that we leave him home for a day to give him a chance to recover.  I've resisted, primarily because getting to stay/go home is a reinforcer for bad behaviour but secondarily, I doubted it would work.  If a day off would help, then Monday and Tuesday would be better days and that hasn't happened.

However, I didn't think I could argue with them in the moment, so I went and got Alex.  He apparently calmed down immediately when told he was going home, which is a bad sign.  

I brought him home and did my best to make it a non-fun day.  I made him do reading comprehension and writing lessons, made him complete a non-preferred 500 piece puzzle and had him participate in Icon's daily lesson/training session.  I also took his favourite toys and put them away until after the school day was done.

I contacted his behaviour therapist and his old teacher for suggestions.  We've tried the standard techniques that should have worked but thus far it's not helping.  I'm not sure what's triggering this.  There have been a lot of personnel changes at the school and apparently one of the other children is also having difficulty.  Neither of those seems like it would be enough to trigger this level of outburst, but Alex's old teacher said it might be enough if Alex hasn't bonded to any of the new people yet.

This is the one "go home free" pass that the school gets.  After this, I will be fighting it as an option.  The teacher has assured me that they've met and regrouped and shouldn't be asking me to do this again.

We'll see what happens.

Service Dog Attachment

One of the key points to making sure that a service dog is helpful is making sure that it attaches to the child with autism.  Part of the criteria for an autism service dog is that it is very eager to make social and emotional connections.  That might seem backwards, until you realize that the dog has to be super-eager because the child's efforts will probably be minimal.

But it does mean that there is a risk for the dog bonding to someone other than its intended child, which is why NSD warned us to keep our distance, particularly during the first few months.

It's been a challenge, particularly for Nathan.  Initially, we'd planned to get Nathan a cat of his own to focus on, but Dave had some last-minute reservations and that plan got put on hold.  Since then, I've been having to spend a significant portion of each day telling Nathan to leave Icon alone.  It's also been a challenge for me, since I'm the one home with Icon all day and the one who deals with the daily training updates and the majority of the outings.

But the efforts are starting to pay off.  Icon is beginning to follow Alex around instead of me, which is a good sign.

We've been having Alex feed Icon, give him treats, play with him during the walk and groom him.  It's a lot to manage but I've been trying to focus on keeping it fun for both of them.

Back to Exhaustion

Last weekend, I was wearing my author hat for a trade-show (Ad Astra, a conference for speculative fiction writers).  It was a productive and fun weekend, but very exhausting.  And now I'm finding myself having a hard time recovering, which tells me that a week and a half of relaxation was not enough to build up my resources.

I have an appointment with my doctor next week and we'll see how things are going.  Meanwhile, back to the napping system which was working before.

We've been hit by a couple of minor crises.  After a couple of years of cranky functionality, our dryer has decided that running for more than ten minutes at a time is unnecessary.  Then there are a few government sponsored paperwork-hoops for our taxes and my EI application.

And to top it off, Alex has been having an especially difficult time at school lately.  Something is happening between him leaving the house and arriving at school, transforming him from bubbly and cheerful into angry, frustrated and unable to cope.  So Dave will be driving him into school for the rest of this week to see if we can get it sorted out.

This brings back memories of the fall, when the afternoon driver was putting Alex into a seatbelt restraint without telling us.  I don't think this driver would do something similar.  He likes Alex and has always been pleasant with us.  And this could be something entirely out of the driver's control (eg something sensory which happens along the route).  If that is the case, hopefully Dave will pick it up and be able to come up with suggestions.

A New Set of Social Rules

We're discovering a new set of social rules when we're out in public with Icon.  I'm honestly surprised by how many people want to interact with him.  Granted, he's a well-behaved and good-looking dog, but I wouldn't have thought that would be such an attraction to the general public.

Sometimes, Icon is working and I'm with Alex, so we can't stop to interact with people or go through the protocol to let people greet Icon.

Sometimes I'm on my own with Icon and then I make an effort to be a good ambassador for National Service Dogs.

And sometimes things get awkward.

Lots of people do "drive by" pettings where they pet Icon as they walk past, even when he's in vest.  It's incredibly frustrating as it distracts Icon but there's not much I can do.  I've noticed that we get fewer when Alex is tethered to Icon and holding the handle, but that may be because they don't want to get close to Alex's flailing limbs.

People who ask to pet and then don't stop are the other challenge.  If we're sitting and waiting somewhere, then sometimes people with ask to pet Icon and then sit there and continue to pet him until one of us is called away.  I'll have to come up with a strategy for that but thus far, it's caught me by surprise.

Icon's doing pretty well with the distractions, but I still worry about it and it's not the ideal circumstance.  He's also getting a lot better about greeting people at home.

All part of the learning curve, I suppose.  

Autism Ontario Summer Camp Funding Open

The Summer Camp respite fund for Autism Ontario is open and parents can apply until June 2nd.

It's not a huge amount of money (usually a max of $ 500 per child), but it can help.  It's a random draw, so there's no guarantee or triage process.

One note though: even if you're rejected, save your receipts from any activities your child does over the summer (including therapy and respite as well as camp).  Sometimes the money doesn't all get claimed and they'll do a second draw in October.

Nathan's Birthday Party

We had Nathan's birthday party at Funhaven on Saturday and I'm pleased to report that the staff did an amazing job to keep things moving.  We ended up with 10 kids, including Nathan, which worked out perfectly since that was the max for everyone to go at once on the bumper cars.

The kids all seemed to have a good time.  I was pleasantly surprised to find out that they've cleared out some of their arcade games for other attractions.  It makes it much less noisy than it was, and more tolerable for me.

We did the bumper cars three times, the jungle gym for half an hour and two games of laser tag.  (For which, I maintain, the children cheated since they're short enough to hide easier than the adults could.)  :)

Then the kids got taken upstairs for cake and pizza.  Funhaven accommodated our allergies and food restrictions, getting a hot dog for the one child who was lactose intolerant and making sure the kids who couldn't eat bacon got cheese pizza.

We had a staff host assigned to us and she did a good job at keeping everyone corralled.  She followed us the entire time and was always available and cheerful.  She even helped with handing out presents to Nathan, so that I could concentrate on taking pictures.  

We did have one slight wrinkle, in that one of the parents misunderstood the pick up time and wasn't planning to come for another few hours.  But it got sorted out and the child came back to our house until the parent could come.

A good start to birthday season.

When People Say "It's Okay"

All parents have been there.  You're attempting to do a parenting moment with your child, maybe on the importance of saying "Thank you" even when they're not excited about a gift, or being aware of other people when careening around in public, or apologizing for an accidental bump or other issue.  During the process, the other person tries to put a halt to everything by saying "It's okay."

I understand why people do it.  It's social protocol, to show they're not upset.  Or because they don't want to be the bad guy and spoil the moment.  Or sometimes even because they don't feel it's the child's actions are that big a deal.

But here's the thing.  It's not actually okay.  Parents have to take advantage of the low-key opportunities to prevent the bigger outbursts later.  It's not possible to teach during a tantrum.

By pushing the "It's okay" (and believe me, it's interesting how many people will want to argue with parents about that), the person is actually undermining the parent, distracting the child and prolonging the entire event.  I'm not sure how it works with neurotypical children, but with mine, if I can't follow up within that crucial 3-5 second window, my opportunity is lost.

I've had other people tell me that I'm being mean and too strict when I've insisted on following through.  But I stick to it, because their social approval isn't worth risking my kids' future on.  They need consistently applied standards, or else it gets too confusing.  And I don't owe the public an explanation or justification in the moment.