Kids Come 1st and Feeling A Little Sad

On Tuesday, Dave and I went to the annual Kids Come 1st golf tournament.  They've been helping to support us for several years now.

It was a lovely meal and the organization raised a great deal of money.  They're shifting focus to building and maintaining group homes for young adults with autism, trying to alleviate the decade-plus waitlist.

But I actually left feeling a little sad this year.  One of the children who is being supported spoke.  He's now seventeen and going to Carleton next year to study physics.  He was diagnosed at three, was completely non-verbal and his parents were told not to expect him to progress.  Clearly, he has beaten the odds.

I'm sad to admit that a petty little part of myself is actually jealous at his progress.  This is one of the reasons why I don't like inspirational stories.  Because not every child can beat the odds (otherwise, those wouldn't be the odds).  With Alex, we've always been told what great potential he has but somehow, no one seems to be able to unlock it.

Part of me wants to ask what I did wrong.  I've worked hard with Alex (just as this other family worked hard with their son), so why did they get results and I haven't?  Accepting that this is part of dealing with a condition which we don't understand is difficult.  In thirty years, maybe we'll have a surefire treatment for autism, but it will come because of the trial and error of parents like me.  And we'll learn as much from the failures as the successes.

We'll keep working and keep trying, as the only guarantee of failure is not to try.  I don't want to look Alex in the eyes when he's an adult and know that I didn't do everything I thought I could.

Inspirational stories are great for those who aren't in a particular situation.  But me, I draw more strength from those without unusually good results.  The people who measure success in inches and still fight just as hard.

Those are my heroes.

Making It Special

Today was Alex's last full day with us before he goes to the cottage and I wanted to make sure we do something special.

Given the unpredictable weather (cloudy, bursts of rain, possible thundershowers), I decided to go with an OC Transpo ride.

Alex always loves riding on the bus.  Usually we'll go do a circuit across the city, pausing to take the O-Train to South keys.  It takes a couple hours but if we time it right, we can get a double-decker bus home, which makes Alex's day.

As entertainment, it's fairly cheap (certainly cheaper than going out to the movies) and watching him light up is always worth it.

Upcoming Break

For the next two weeks, posts are going to be a little thinner than they have been.  We're about to hit our annual kid-free respite zone and I'm going to be concentrating on a bunch of projects.

I'd like to update the Corner Pieces website and make sure the information I'm giving is up to date.

I want to finish my second round edit of my novel, Revelations, before sending it to an editor before publication.

I want to separate my writing website from my autism/family website.  I've decided to go with a pen name to protect my privacy and my family's privacy.  I've heard too many horror stories of determined fans tracking down their favourite writers.  (Not that it wouldn't be awesome to have determined fans.)

And then there's the usual round of household repairs, etc.  Stuff which gets put off until we have some kid-free time.

I'm setting myself a goal of 3 posts per week (instead of the usual 6).

Meanwhile, enjoy the warm weather and the sunshine.

Another Tough Parenting Call

Nathan had an incident at camp.  He hit several children and then when the counselor took him to time out, he slapped her.

Not good.

I'm at a loss for how to deal with these types of issues.  He doesn't hit or slap at home, so I have no opportunity to directly intervene.  It only happens when he's out of my custody, which means any intervention I do is after the fact and thus not particularly effective.  I'm doing my best, using his love of superheroes to remind him that heroes like Captain America don't hit first.  They protect people, instead of hurting them.

I talked to him and tried to find out what happened.  All I got was that they said mean things to him.  I asked him what he should have done and he said he should have asked a counselor for help.  So, he's learned that lesson, at least.  I told him that I know he was a good person and didn't want to hurt people.  I told him he needed to remember to keep his hands to himself and ask for help when he got angry.  It's honestly the best option I can think of to do.  (And to be fair, these incidents are usually widely spread over time instead of a regular occurrence.  So maybe it's just the challenge of being seven.)

The second challenge happened when he decided he wasn't going to go back to camp because everyone would be mad at him.  No matter how I reassured him, he was insistent.  He wasn't going back.

I already had my suspicions that he was under more stress than he could easily cope with, so I wasn't inclined to push him too hard.  I decided to go with a slightly sneaky approach.  I insisted that we had to go to the camp so that he could apologize for hurting people.  My goal was twofold: 1) he would see that people were understanding and accepted that it was a mistake and 2) he might remember how much fun he was having and want to stay.

Goal 1 worked.  Goal 2, not so much.

We ended up coming back home.  He had a quiet day watching me work and Alex have therapy.  He's agreed to go back to camp tomorrow for the last day.

Complaining or Stream-of-Consciousness

Our behavioural therapist has come up with an interesting theory about Alex's reciting, singing and knee-jerk complaints to questions or instructions.  Basically, she thinks his internal monologue is set to external.

If he's singing the same song over and over again, it's because he's got an ear-worm.  If he's reciting a scene, the same thing except with dialogue instead of a song.  His reflexive "No <blank>" response to any question would be the equivalent of our mental "ugh" when asked to do something distasteful.

It doesn't really change much on how we're handling it.  Regardless of the source, he has to be taught that there are times it's not appropriate to bellow Bon Jovi at the top of your lungs (no matter how good your rendition is).  Ditto reciting endless lines of dialogue from Super Grover 2.0.  And there are also times when it's best to keep your reactions to yourself. 

But it does suggest that we're getting an interesting insight into his inner world.  I've often wished for thought bubbles or subtitles so that I could understand what was happening inside.  Now it looks like I may well have that chan

Camp Resolved

I spent a lot of time agonizing over whether or not to force Nathan to attend camp when he didn't want to.  Eventually, I decided I at least owed it to him and myself to try it out.

I told him that we would go and take a look and give camp a try.  He wasn't happy about it and kept saying he would leave right away.  But then, about halfway through the morning, he decided maybe it wouldn't be so bad.

By the time we got to camp, I got a dismissive wave from across the room and a "Bye, Mommy!" before I'd even finished signing him in.  So much for the tearful "Mommy don't leave me there" from the previous night.

I'm glad he's excited.  He came back talking about how they divided into superhero teams and they had to join together to stop Dr. Evil from taking over the world.  So it sounds like they're going to have a lot of fun.

When To Push?

Nathan did really well at his swimming camp last week.  But suddenly, about halfway through Saturday, he decided he didn't want to do Superhero camp this week.

He's been excited about this since I signed him up back in March but all weekend, he's been adamant that he doesn't want to go.

Maybe two weeks in a row is too much.  Maybe he's scared of trying something new.  Maybe he's genuinely needing a break.  Maybe it's just a control thing.  Maybe it's because Alex is staying home to do therapy.  Maybe it's because of Nathan's obsession with the Kerbal Space Program on the computer.

I'm driving myself a little nuts here trying to figure it out.  If it's scared of trying something new or jealousy of his brother or wanting to play his computer game, I should make him go.  If he's needing a break, I should let him stay.

I find myself wondering if something happened at swim camp.  Could he have been hurt?  The target of bullies (or worse, a predator)?  I don't know.

At first he tried to tell me he couldn't go to camp because he had too much work from his "boss" who sends him "emails" to tell him what to do.  I was fairly certain this was just made up but I asked Dave to take a look at the family computer.  I always try to take what my kids say as having a grain of truth.  I don't want to make the mistake of assuming it's all a game when they're really trying to tell me something.  (The computer is fine, this was a game.)

Then he said he couldn't go because he was sick.  But a kid who's been bouncing around singing and playing all weekend doesn't make a convincing invalid. 

Now he just says he doesn't want to go. 

I'll probably make the wrong decision on this (all parents do, otherwise their kids wouldn't have anything to complain about to Dr. Phil) but I wish I understood where this was coming from.

Depressing Turn for Writing Group

I'm still relatively new to the local chapter of romance writers so I'm not sure how seriously to take the mutterings of folding.  The chapter has been going for 30 years but every year there are threats of dissolving because of lack of volunteers.

I've done my part with volunteering on the Board but with starting the new behaviour program, my time just doesn't allow me to continue.  Maybe it's made me more sensitive, but this year the threats to dissolve seem more serious.

I've had this effect on a number of groups.  I join and a short period later, the group dissolves.  It's enough to make a girl paranoid.

But this would be a real shame.  This group is great, very supportive and able to give real advice and help.  I've been to some of the other writing groups and the nitpicking, paranoia and politicking makes me reluctant to join.

I hope things turn out. 

Rethinking Our Time Out

We've been working with a behavioural specialist to deal with Alex's aggression.  One of the first things she did was revamp our time-out procedure.  At that point, we were using the kitchen table and often had to end up holding him down in order to get him to stay put.  He would be throwing things and kicking us.  It didn't take a specialist to see that it wasn't working.

We moved the time out to the landing in front of the basement door.  It meant getting a lock on that door to prevent him from slamming it or bolting down into the basement.  But it did make it a lot easier for him to just get up and leave.  Which he does, repeatedly.

We were supposed to use a non-verbal redirection to send him back.  Not touching him and not engaging with him, just pointing.  This ended up with him slapping at our hands and ignoring us.  It became a game and one which we couldn't possibly win.

So we modified the plan without consulting the specialist.  (I should know better but I did it anyway.)  We first tried holding him in the time out but I knew that wasn't a good solution.  Next, we tried threatening to take away a favourite toy if he bolted from the time out.  That worked but required a verbal interaction.

We met with the specialist yesterday and she pointed out the flaw in our thinking.  If we threaten to take away a toy, then Alex is winning the battle of wills over his behaviour.  We are teaching him that he doesn't have to behave without an external consequence (and since consequences in the outside world will never be consistent enough to be an effective deterrent, that's not good.)

So now we're going back to non-verbal redirection.  She's warned us that it likely will be a game for awhile and he's likely to do everything in his power to get a reaction from us.  But if we stick to the plan, eventually he will realize that his behaviour is non-functional.

I'll admit to still being skeptical.  But if my thinking could handle the situation, we wouldn't be in this mess in the first place, so I'm going to trust someone else.

The Brief Reign of the Duck Song

The noble quest of a duck wanting grapes from a lemonade stand may well be over.

Alex has gone country on us.

His new favourite song is Compass by Lady Antebellum.  The video played on Juicebox, a new Saturday morning video show on CTV.  As those who click on the link will discover, the video is full of light effects (I'm guessing from people waving glowsticks around).  Alex loves light effects (he's a big Tron fan).

So I've learned a country song and to my surprise, I'm enjoying it. 

But shh, don't tell anyone.

Giving In or Strategic Retreat?

Food is a challenge for Alex but we've slowly managed to coax him into eating more and more "regular" food instead of the pureed stuff.  But sometimes we hit a barrier.

Today he didn't want to have his apple at lunch.  He began spitting and throwing the pieces at me so I had to cover his mouth.  (This is a strategy that we absolutely cannot let him get away with, so I put my hand in front of his mouth, careful not to block his nose and not putting a lot of pressure on.  I just keep it screened so that he can't spit.)  To up the ante, he then kicked me, which incurs an automatic time-out.

Now I had a dilemma.  Do I do the time-out immediately to reinforce not-kicking or do I force him to finish the apple first since he's almost certainly doing this as a way to get out of eating it.

I put him in time out but told him he'd have to finish the apple when he was done.  He was not inclined to cooperate and kept bolting from time-out.  It quickly became clear that this was becoming a game, he'd bolt and I'd bring him back (and get swatted every time). 

I ended up going down into the timeout area with him and holding him with his back to me.  I kept his arms held down so that he couldn't swat, stood far enough back that he couldn't kick and we were far enough from the wall that he couldn't headbang.  I held him like that for two minutes and told him to stay put.  Then I restarted the timeout.

It took almost 45 minutes to get our 1 minute of calm (although he did stop bolting after being held).  By then, our therapist had arrived to start therapy.

I took him back to the table to finish the apple and he immediately began spitting and throwing it again.  Restart the whole procedure (another 30 minutes).  The therapist suggested we put away the apple until snack and try again. 

I agreed but it's not sitting entirely well with me.  I'm not sure I could have gotten him to eat the apple without physically forcing it down his throat (not advised).  But it still feels like I gave in to a tantrum.  I did make him ask "No eating apple, please" before giving up, so maybe there's a little success to be gained.

It was a very frustrating day.  One of the reminders that no matter how well he does, we will always have to be ready for setbacks.

Recital

Alex's music therapy teacher organized a little recital for four of her pupils, including Alex.  We went in with a flexible attitude for success: if he didn't hurry away screaming in protest, we'd call it a win.

Instead, we actually got quite a lovely little performance.  First he did Vivaldi on the xylophone (I'm taking the teacher's word for it, I'm not much of a classical music person.  She could have just had him making up stuff ... but it certainly sounded pretty.)  Then he did a song of his own composition which she called "Boogie Woogie" and it was nice and jazzy.

For a finale, the whole class did "Let It Go" from Frozen.  Alex picked out the bass notes on the piano and did a really good job.

I was impressed with all the kids.  One little guy had trouble with applause and loud noises, so we all practiced our golf claps.  The little girl did a great job singing.  Another little guy did a couple of piano solos. 

It was also nice because I met a fellow mom whom I've been emailing for a few years but have never had the chance to meet in person.  We had a great time visiting and getting to know each other face to face. 

I'm really pleased.  Alex did as well as any other child in a recital, slightly irritated at having to perform but charging through anyway.

I'm calling it a definite win.  A hit out of the park.

The Story Behind the Pictures

First, I'll apologize for irregular posting.  I'm still working out the summer routine.  During school, I get regular time in the evening to post but that's gone all up in the air for the summer. 

I think the wedding went reasonably well under the circumstances.  Alex was in the middle of a behaviour burst, with a great deal of difficulty following directions and staying put.  He bolted several times in the middle of the ceremony and eventually we let him retreat to the back of the church, rather than continually disrupt the proceedings.  I tried to burn off some excess energy at the park while the bridal party had pictures done, but it didn't really help.  He still kept bolting during the reception and he and Dave ended up leaving before dinner.

Nathan did better, although he refused to talk to anyone.  He buried his head in a toy or the iPad for the entire proceedings.  As soon as we were away from the crowd, he perked up and was his usual charming self but as soon as we had more than 3 people around, he got sullen and withdrawn.  He only managed 45 minutes during the Friday night mendhi party before Meghan took him home. 

The Saturday rehearsal dinner was just sad.  My sister told me the restaurant we were going to served hamburgers and pasta, so I assumed things would go well.  Unfortunately, it was fancy gourmet burgers and pasta, which Nathan didn't like.  The staff made a good try.  They brought him French fries, but the ketchup was their fancy in-house ketchup, which tasted like barbecue sauce.  They did up plain pasta, but he was already upset.  My other sister's boyfriend went down the block to get him an A&W burger, but he got a Buddy burger instead of a Baby burger and that was just the last straw.  Nathan burst into tears and I brought him back to the hotel.  We ordered pizza and ice cream from room service.

For the ceremony, Nathan spent the entire time watching his iPad with his noise-cancelling headphones on.  He enjoyed running around the park and made it through the entire dinner (although he refused to eat).  We'd brought some sandwiches and fruit to help tide things over.

People kept coming up to me and telling me how good the boys were being.  I appreciate the compliment but part of me kept wondering how low their expectations were to consider it "good" behaviour.  I think the boys did an acceptable job and we did an acceptable job of making it tolerable for everyone.  It doesn't really qualify as "good" in my books.

Having an aide with us was a great decision.  It gave us an in-house sitter who was familiar with the kids and whom we could trust to manage them with minimal instructions.  The extra pair of hands came in handy more times than I can count.  It's a little unnerving to have someone else effectively living with you for 3 days, but since we got a two bedroom suite, there was plenty of privacy for all.

I knew it was going to be a challenge going into it.  I don't push the boys to attend most large family gatherings but this was a special occasion and I felt it was worth it to push their limits.  I guess I had my hopes up more than I thought, since I've ended up a little disappointed in how things turned out.  But the rational part of me is satisfied.  I think I did everything possible with what I had and got an acceptable result.

As Promised, Wedding Pictures

Hi everyone.

We made it back safe and sound and bearing pictures of the event.

My sister Avril and her fiancé, Varun, at the mendhi party on Friday.

Alex and our aide, Meghan, on the rooftop of our hotel.

The boys take a well-earned break to chill-ax on the roof.

My mendhi design.  The artist drew it freestyle in a matter of minutes.

Nathan awaits the groom's arrival.

The barat, the ceremonial procession of the groom and his family.  Yes, that's a white horse he's riding in on.

Nathan desperately wanted to go inside and get things started.

And once Nathan went in, Alex was quick to follow.

The boys enjoyed a break in the quiet room.  And some newly acquired toys.

My sister Nicola and her boyfriend, Ned.

Me and Dave.

Ned tries to help Nathan with his mad Lego assembly skills.

My sisters.  Avril designed her dress herself and then had a seamstress make it for her.

The first dance.

 

The groom's cousins performing a dance routine to "Single Ladies".  

Going Dark

We have reached the panic stage of last minute preparations for me.  There's too much to do and something has to give.  Unfortunately, blogging drew one of the short straws.

I will be back next week, hopefully with awesome pictures of everything.

Enjoy your weekend everyone.

No Margin For Error

This is one of those really frustrating moments where something has gone wrong and there's really no one to blame for it. 

My sister's wedding is coming up this weekend.  We know it's going to be a challenge for the boys.  Lots of people, strange food and music, staying up late, lots of having to sit still and be quiet.  We've been trying our best to counterbalance that with social stories, plans for entertainment and trying not to stress them.

Today I discovered all of that work may end up being useless. 

For Alex, one of the things we know is that he seems to have trouble processing large doses of sugar.  Since he doesn't eat many solids (and chocolate and candy are solids), it's generally not been an issue.  But there is an Achilles heel: ice cream.  Pure, sweet semi-frozen sugar wrapped in dairy.

We know his limits: one cone per week.  More than that and we get a behaviour burst where he becomes oppositional, highly excitable and has difficulty controlling himself.

Knowing this, we were strategic.  We avoided giving him ice cream on the weekend so that he could have some for Canada Day.  Dave planned to take him out for a nice treat while my father and I took Nathan to the local fair.

My father was also taking Alex to the fair and to see the fireworks in the evening.  A solid plan, except for the fact that he forgot that Alex had already had ice cream.

When traffic to get out of the fair was understandably bad, he decided to get Alex a treat while they waited: an ice cream cone.

My dad would never do anything to sabotage Alex's chances of success deliberately.  We had told him that Alex wasn't getting ice cream on the weekend because we wanted him to be able to have some on Canada Day.  I had told him that Alex and Dave had gone in the afternoon while we were out but I guess it didn't quite sink in.  My dad thought it was a perfect solution, preventing Alex from getting bored and frustrated while waiting in traffic.

We're already seeing the first echoes of difficulty.  Tonight's supper went poorly and he refused to participate in soccer, which he usually loves.  Usually the behaviour burst for two ice creams in a week lasts 3 to 5 days.  The last time he had two in one day, it lasted for 8 days.

At this point, there's nothing we can do.  We already had support in place for a worst-case scenario.  Now we know it's almost a guarantee we'll have to use it.

Alex may still surprise us.  It's been known to happen.  But the odds of it are unlikely.

I'm incredibly frustrated about this.  Kids and weddings are dicey at the best of times but add in autism and the margin for error shrinks to a paper-thin line.  One simple act and the odds of success shrink down to almost nothing.  Granted, they weren't huge to begin with (I was putting them at around 20% for getting through the ceremony without incident and around 10% to make it through the reception.) 

I keep telling myself there's nothing more I can do.  There's nothing which will get it out of his system except time and patience.  If things don't work out, then they don't work out.  I've done everything humanly possible and now I have to accept that things are out of my hands.

These words do not sit well with the product of multiple generations of control freaks.  But what does work is reminding myself that holding onto this is only likely to make things worse.  Past is past and it's done.  Cope with what I have, rather than what I wish had been.

I'm grateful my dad spends as much time with Alex as he does.  Alex loves going out with his Avi and gets to experience way more than he would if it was just Dave and I.  It's really great to watch the two of them together.  So I want to be clear: this was a mistake and one which could have happened to anyone.  My frustration is with the results, not the action.