Taking A Break For the Holidays

Hi everyone,

I'm going to be taking a break from blogging over the holidays.  I will be back on January 2nd with our new round of adventures.

I hope everyone enjoys their holiday break and that it goes as smoothly as possible.

Dealing With A Major Meltdown

Yesterday was supposed to be simple.  My sister has arrived from Toronto and the kids wanted to see her, so we'd planned to go after school for an hour or so.

Cue the meltdown from Nathan about delaying his screen time.

I'm starting to think that maybe screen time shouldn't be an option for him.  He obsesses about it and it triggers at least 80% of the meltdowns and fights on his end.

This was a spectacular meltdown, with screaming, hitting, and plenty of shouting about how he wishes he would die or that we would die or that the police would take us away.  He tried to cling on to the front door and got his fingers pinched as it closed.  He screamed at full volume for most of the car ride and hit Alex and me.  He threatened to hurt himself over and over and over and over.  (I do take these kind of threats seriously, but with Nathan, I've discovered it's an attention thing.  He's never acted on it and when pressed, he has no idea how to proceed with what he's threatened.  But I always keep a close eye on him.)

End result of the tantrum: no screen time until Christmas and his favourite computer program is now gone from the computer.  (We did a backup so it can be restored later.)

It also ended up with me sitting outside in the cold on a wet bench for half an hour until Nathan could calm down enough to get past the mad part of the tantrum and into the sad part of the tantrum.

Once he shifts from threats and screaming to crying, then I can be more understanding and sympathetic.  As long as he attacks, I need to present a wall of indifference.  One of the reasons that he threatens us with hurting himself and saying that he wants to die is because those are hard things not to react to.  

It's a long process.  And it's exhausting and frustrating.  Particularly because I have to keep my anger in check and stick to the process I decided on when I am not angry.  (Anger distorts your perceptions, so it's too easy to get carried away if you're acting spontaneously in the moment.)

He's asked several times if he can earn back his computer game and screen time.  To which I've told him: no.  Even though he has said sorry and stopped being angry, what he did while he was angry is real and has real consequences.  He's a little young for the concept, but I think it's one we need to start pressing.  That "sorry" doesn't undo everything and wipe the slate clean.  "Sorry" is a promise to try and do better in the future, not an undo-ing of the past.

Testing Walking Away Or We Have Squirrels

Yesterday was a pretty hellish day.  Depression plus a large amount of pressure is not a good mix.  But I did what I could and let the rest go.  And yes, there were fairly severe negative consequences for what I could not do.

What I wasn't expecting was to hear squirrels chittering away while I tried to sleep.  I'm not sure if they're roosting in our gutters (or somewhere else external) or if they've found a way inside the roof.  It was very localized, so I don't think they've managed to get inside the actual house.  

I asked Dave if he would call a service to deal with it and his answer was that he didn't feel comfortable with that.

My reply: I'm not going to be able to deal with it for at least a month.  So if you don't, they will have time to do damage and if they go into hibernation, the service might not be able to get rid of them.

I don't know if he'll deal with it.  (And I am well aware that the squirrels can do significant damage but this is the point: I am overwhelmed and do not have the energy or time to cope with what is already on my plate, let alone anything extra.)

Permission To Walk Away

So, here's the thing.  This has not been a good couple of weeks for me. (And if I'm honest, September onward has basically been a stress-fest.)  

The holidays are always stressful.  There's a lot to take care of and I'm the one who has to do it all because Dave tends to retreat from anything involving social demands.  But I refuse to let that compromise the kids' Christmas.  This is a special time of year and they deserve to enjoy it.  (We go through the same thing during birthday season, which is why my birthday falls over like a lead balloon.  It's last and I don't have the energy to do anything special for myself anymore.)

Now add in the challenges we've been having with Alex.  The headbanging is still an issue at school and now the OT-discharge stuff is being dumped on top of that.  I finally got the "package" that I was promised (one page) and it basically says "screw you, we don't care, don't let the door hit you on the way out."

Then there's the other school-related issue that I'm getting to deal with.  The earlier start means that I can't get Alex out the door and start work on time.  There's a relatively simple solution, Dave gets him onto the van and then he can leave for his work.  But, we've had problems where Alex takes Nathan's winter clothes (boots, gloves, hats) or forgets important aspects of his own (snowpants, hat, gloves) and then I have to drive over to the school to make swaps or drop stuff off.  Again, it's frustrating that I'm the one who has to deal with it and it gets taken out of my work day.

Oh, and just to be really fun, last week, Alex broke his helmet while skating.  So he needs a new helmet.  But I didn't have time to get him a new helmet, so I need to either find a substitute for tomorrow or he doesn't get to go skating which will tank his day.

Add in that Nathan is showing a lot of signs of stress, including acting out and threatening to cut himself off and I've officially got more than I can handle.

So I'm giving myself permission to fail.  And I know that it will have horrible consequences but I also know that I am too damned tired to fight anymore.  I'm tired of getting to be the one who deals with everything from anxious grandparents to angry kids to a depressed spouse to an indifferent bureaucracy.

Autism Ontario March Break Camp Funding Open

Every year, Autism Ontario holds a draw to provide funding to families for March Break and the summer.  The March Break applications are now open.

Your child has to be signed up for something: a camp, a respite worker coming to the house, a therapy program, etc.  It can be an ongoing program, not just one that runs during the appointed time.  We used our receipt for ABA therapy for several years.

The downside is that there is no guarantee that your family will be chosen.  The odds seem to be about 50-50 of receiving a grant and the amount of money caps out at $350 per child.

But, even if you're not chosen, there's still a chance of receiving some funding.  Even when we aren't chosen, we save our receipts because in the last 2 out of 5 years, we've gotten an email after the period (usually May or October).  It explained that not all of the funding was claimed and invited us to submit receipts for reimbursement.

The deadline for applications is January 20th and they need the receipts submitted before the end of March.

A Lesson In Bullying

Being a parent of a child with special needs is frustrating, there's no question about it.  The system is confusing, opaque and sometimes it seems as if it has been deliberately designed to mislead.  So I have a lot of sympathy and tolerance for frustration.  But it bothers me when parents take a bullying approach to getting help for their child.

There does seem to be a subset of people who believe that only by being angry and aggressive will they get any results.  They are rude, attacking whomever they are dealing with, regardless of whether or not the person has the authority to give them what they want or whether or not they are at fault for whatever perceived error has occurred.

Little hint from someone who has been on both sides of these issues?  Being rude and aggressive does not get results.  In fact, in increases the chances of having problems with the services your child needs because no one wants to spend the time to deal with the parents.

Generally, most autism related services are staffed by people who genuinely care about wanting to help children and families.  Most of them have experience, either as parents directly or through other ways.  They get how difficult the situation is.

We don't deserve to be called names, accused of profit-mongering off parents' misery or otherwise treated as the enemy.  And, more importantly, it's not a good strategy.

Bullies, swallow your pride and try treating us with some courtesy and you'd be surprised how smoothly the path can go.

A Blow from CISS for OT

Yesterday, I got a call from an OT worker at CISS wanting to just give me a courtesy call to tell me that Alex is going to be discharged from their services at the end of this year.

Um, excuse me?

They've promised to send home a bunch of material for me to look at, including Alex's progress reports and the discharge criteria but as I understand it, basically the standards seem to be: we've provided help for awhile and thus the teachers should have all the tools they need to continue to help him.

As much as I can agree with the policy that the role of the OT consultant should be to provide support and training about the individual student's needs, I have some problems with this particular scenario.  (I'll be waiting until I get the paperwork to confirm that I've understood it all correctly, but I'm not encouraged by what was shared yesterday.)

1) We've gotten very little communication and support from the OT team thus far and we were apparently supposed to be receiving at-home exercises and workbooks.  Now, I didn't have a problem with this as long as the OT was an active presence in the classroom and Alex was making progress.  Granted, I've been told what tools have been requested, but I don't know which requests were fulfilled or how they're being used within the classroom.

2) Alex's actual progress is not taken into account.  The message seems to be "we've taught what we came to teach" and it doesn't matter if Alex has actually learned it.  This was reinforced when I asked if they would return if Alex continued to have problems and was told that, once discharged, they would no longer provide any support for his fine motor skills, eating or toileting.  They will only return if he is referred for a new problem.

3) They didn't seem to realize that Alex will only be at his current school for this year and next year.  After that, he will be moved to another program, which means an entirely new set of teachers and aides, who apparently will not get any OT support from them.  I've been told it will be my responsibility to ensure Alex is getting the tools and support he needs, something that will be difficult since I've been kept in the dark about what specific support he is currently getting.

This is incredibly frustrating.  I was initially told that CISS would support Alex throughout his entire school life and now the message has changed.  The person who called me said there have been a number of changes due to reorganization but when I asked if a new agency would be taking over, the answer was vague and sounded a lot like a delicate "no".  

The system of support for autism needed an overhaul but I'm irritated that the current approach seems to be to remove services without any plan or information about replacing them.  This now gets to be one more fight I have to deal with and frankly, it's a fight I can't really win, because even if I somehow force them to stay, I can't also force them to do a good job.

Day of Respite / Day of Hell

In what is becoming a depressingly re-familiar pattern, we got a day of respite where Alex did an overnight with my parents and then a day of hell when his already shaky ability to listen and be trusted crashes below typical levels.

This is what we used to deal with all the time with Alex.  He would complain, get into things he wasn't supposed to and otherwise make our lives difficult.  We would do our best to keep everything consistent but would get worn out and need a break.  But we knew getting that break would prompt an even more difficult day afterwards.  

That was several years ago.

Up until this September, Alex had been doing quite well.  We could trust him on a limited basis, even unsupervised.  He still sometimes got into something but we knew which objects/activities were a great temptation for him and could make sure they were out of eager hand's reach.

Yesterday, Alex spent most of the day trying to get into things he wasn't supposed to.  His advent calendar, pushing the buttons on the microwave and alarm system, etc.  But the big frustration came while Nathan and I were at cartooning.  We came home to discover that Alex had taken Nathan's carefully prepared Triops aquarium (an early Christmas present from his great-grandmother) and dumped it, the eggs and the food into the sink.  From a recreation of Dave's memory, it sounds like Alex was messing around with it while Dave was busy dealing with an urgent call from work.  Dave told him to get out of the kitchen and he remembers Alex pouring something out into the sink.

Nathan was devastated.  He'd spent two days preparing the aquarium and was looking forward to adding the eggs that day.  Alex lost his screentime privileges for the rest of the day and will be paying for a replacement kit to be shipped to the house.

From there, the day continued to go downhill as Alex continuously demanded screen time, only to get upset when he was told he couldn't have it.  That would trigger a whining fit and an acting out.  Which would trigger a confiscation or time out.  Things would get settled and the whole thing would begin again.

Having to constantly supervise him is exhausting and expensive.  We used to have aides constantly in the house to provide an extra set of eyes so that we could do things like take care of Nathan and go to the bathroom.  We're not used to operating that way any more.  

Update on Alex

Since we started using the Advent calendar as a reward for Alex eating his fruit, we've had very little complaining and he's been eating relatively promptly.  He still goes slowly enough that we don't have time for him to have screen time in the morning, but it's nice not to start each day with a battle.

We'll be upping his medication next week, to help him adjust to the erratic schedule for the holidays.  Hopefully that will also help with the head-banging at school.

We're still getting plenty of opposition (head-flips (so he's ostentatiously *not* looking at you), mm-hmms, no s, and whining) but not head-banging at home.  Sounds like some progress to me.

And he's managed to earn two ice-creams for toileting this week.  Slowly, piece by piece, we're getting him back together.  Hopefully we don't lose too much ground over the holidays.

Quickstart Accepting Applications for Refresh/Restart 2017

Quickstart Autism, a local charity, does draws every year to give parents a chance to have a night or two away from their children and give themselves a chance for a break.  The hotel rooms are donated by local hotels and Quickstart usually provides some funding for childcare and meals.

You can apply on Quickstart's website under Info and Resources --> Respite.

It may not sound like a lot, especially when you're overwhelmed, but I've found that even one night away with a solid sleep can make a big difference.

Parents are responsible for finding their own childcare for their kids.  There are a couple of different places which can help with that, if you don't already have someone.  Andrew Fleck offers short term child care, including overnight, for children with special needs.  Autism Ontario has a database of respite workers and FASD has a list of respite services in Ottawa.

Helmets and Head-banging

Alex has been having a problem with head-banging at school lately.  He's been banging his head since he was eighteen months old and it's probably one of the most upsetting behaviours he does.  

It began with an occasional incident, but the deliberateness of it bothered us.  He would be sitting down on the floor and then he would very carefully line up a toy and then hurl his whole torso forward and bang his head on the floor next to the toy.  Then he'd continue playing with the toy as if nothing was wrong.  It was one of the first unambiguous signals we had that something wasn't right.

We tried to intervene and the more we tried, the more he did it.   We would hold him and try to prevent him from banging.  He would squirm and fight us for hours and then still bang his head as soon as he got free.  He started to do it during any sign of conflict or if we told him he couldn't do something.  Eventually, what began as a once-in-a-while thing became a daily thing, then an hourly thing, and then we were getting 50-60 incidents per day.

So we put him in a helmet to try and protect him.  And watched the incidents soar to 100 + per day, along with the intensity of the strikes.  We sought advice from any number of people, all of whom were baffled.

We had catalogued the behaviour and knew that while the first head-bang was usually unpredictable, the ones after that seemed to be triggered by our interference.  So we made one of the hardest parenting decisions we ever made: ignore our child hurting himself.  We took off the helmet since it only seemed to encourage him to bang his head harder and we trained ourselves not to react.  Not a flinch, not an indrawn breath, nothing.  

Six weeks later we were back to head-banging happening every once in a while.  A few times a week but nothing like the intensity we'd experienced before.  Slowly, it continued to diminish until it became much rarer.

It's counter-intuitive but I find a lot of autism parenting is like that.  I can't let myself get caught up in what should work.  I have to observe and record to find out what actually works and then embrace it, no matter how it seems to run against my instincts.

His teachers wanted to use the helmet to deal with this latest round of headbanging.  I can understand.  It's still viscerally upsetting to watch Alex do it.  If anyone else hit him that way, I would have them up on assault charges (assuming I didn't qualify for assault charges myself for retaliating).  But they listened when I explained how it can make things much worse.  Hopefully, we can find another solution which will work for them.

Christmas Shopping Done

Yesterday, Dave and I took the day off work to do our Christmas shopping.  It's a tradition we started several years ago and it's worked out really well for us.

Aside from the challenge of finding time and sitters, both of us find the mall's weekend and evening crush to be overwhelming.  Too many people, mostly anxious and in not great moods, all of them in a rush, rush, rush.  By going on a weekday, things are quieter and we're able to accomplish a lot more.

This year we had a bit of a dilemma for Nathan.  He requested one of the "additional toy required" video games.  The game itself looked like a lot of fun and had some great nerd-esque tie ins but the problem is that it's been out for over a year, which means that the additional toys that the game needs will become very hard to get over the next year.

Buying the game meant we would have to stock up on the toys, blowing our budget for the holiday.  But then we would have gifts ready for his birthday and maybe even next Christmas.  We're doing a consultation with Santa and I think we can find a way to make it work.

We also ran into a problem with Alex.  Namely, what could we get him which he would like and which won't drive us nuts.  Lately all he wants are scatterable toys (small numbers and letters, beads, and small game pieces).  He uses them to make patterns, which he enjoys, but it ends up being a constant fight to keep them from being abandoned in scattered patches all over the house.  I don't want to bring something in which will only ratchet up the conflict.  We decided to go with more activity based gifts this year for him, like hockey games or concerts.  But he still needs some toys to unwrap under the tree.

I think we've got it mostly sorted out.  Although I'm sure there will be some last minute running around for the inevitable "I forgot" moments.

Food Fights

About a month ago, we introduced cantelope and apple slices into Alex's breakfast.  Over the last several months, he'd begun refusing the apple sauce he's been eating since he was a toddler.  For the first week, he seemed to really enjoy the fruit slices and for once we thought we might have added a new food without going through the usual drama.

We're not that lucky.  About two weeks ago, he began refusing the slices.  We wondered if maybe we'd cut them too thick that day.  (We usually try to make them paper thin for easy chewing and swallowing.)  It had been going so well that we decided to trust his reaction and we didn't push it.  That began a major battle each day to get him to eat the fruit.  He'd been eating it cheerfully and now he whined and complained.  I needed to make eating the fruit a necessary step to earning screentime, but that affected other issues.

Today is the first day of Advent calendars.  I told Alex he could have the toy from his Advent calendar as soon as he finished his fruit.

And he did it without complaining or stalling tactics.  Just ate it quietly and quickly and got a calf from his Advent farm set.

That gives me 24 days of rewards to incorporate the fruit into his regular breakfast.  Then we'll have to figure out another reward to keep things going, one which is a little less seasonally dependent.

What's Going On Inside?

One of the big debates which happens in the autism world is: what is my child really experiencing/understanding/thinking?  Especially if your child has difficulty communicating, it can be impossible to guess what's actually going on in his or her head.

People tend to assume that the child thinks and experiences the world basically the same way as everyone else, with a blockage of "autism" making some senses more intense and keeping the child from sharing those thoughts.  There are always a few inspirational stories floating around the Internet of a severely autistic child who suddenly finds a way to communicate and the family discovers that he/she is basically normal inside.

I don't share that belief.  I look at my son and I believe he experiences the world in a very different way than I do.  I can only guess at what he experiences, but I suspect it's a world where shapes and patterns that I don't perceive stand out in sharp relief for him.  I suspect it's a world where sounds are muted and blur together, like listening to a radio in the next apartment.  I suspect that his brain puts together memories and experiences in a way that I can't even guess at, perhaps as a series of disconnected images.  But I don't know, and I'll probably never know.

We've been cautioned many times by therapists not to assume that Alex understands what is going on around him in the same way that we do.  He's very intelligent so there can be an assumption that he only needs to pay attention and he will grasp something.  But it's not a matter of paying attention.  I think that at times, we are asking him to participate in an entirely alien way of dealing with the world.  It's unfortunately necessary if we want him to have even a basic level of independence.  Otherwise we will have to be his interpreters for the rest of his life.

I'd love to know how he experiences the world.  There are days when I think that is the real blockage facing us: the fact that I can only guess at what is inside his head.  

Driving Dilemma Update

Good news that the new afternoon driver appears to be another nice person.  I know the odds were in our favour, but we've beaten the odds too many times to find much comfort in that.

I still have a lot of concerns about the safety of the transport company's vehicles.  If the obvious stuff isn't being taken care of, then what about the not-so obvious stuff?

It's frustrating to be constantly having to depend on situations which are out of my control.  I have no say in which companies are hired or what standards they are held to.  The byzantine labyrinth of bureaucracy ensures that it's difficult to get straight answers.  Everything is designed to conceal and cover, so that blame can't be thrown.

Driving Dilemma (Yes, Really, That Again)

On the weekend, Alex's afternoon driver contacted us to say that she was quitting the company.  The reason revolves around last week's snow.  Two week's prior to that, she had been asking for snow tires and was told no.  On Monday, when we had a massive (and predicted) snow dump, she was initially told that they might be able to do the tires on Thursday.  She complained and was then told to hurry up in the middle of the day and go to a place to get the snow tires on.  She did so, which took 2 hours.

The company then refused to compensate her for that time.  It was the last straw on the safety and compensation camel.  (They also refused to provide winter wipers, an ice scraper or even help out with a cell plan when they insisted on her carrying a cell phone.)

She offered to give them a week's notice so that they could do a smooth transition.  They told her to leave the keys in the van and that was it.

I'm very glad she contacted us because we have heard nothing from the transport company.  They called this morning to say that Alex has a substitute driver this morning (the third one in a row, which makes me wonder if the morning driver has also quit).  I asked them about the afternoon driver and they were surprised to learn that I knew of the situation.

This isn't the first time that we've seen the penny-pinching in the transport companies.  Four years ago, we complained to the company because the van had bald tires.  Another time, a driver casually mentioned he'd been driving with the "check engine" light on for three weeks and the company refused to do maintenance.

Obviously there's not much profit in the transport industry.  The drivers are barely paid minimum wage when you divide their hours by the route payments.  The schedules are rushed to include as many routes as possible.  The equipment and vans are falling apart and maintenance is put off until the last minute.  Communication is minimal to non-existent.  

I am curious to know if this is all in defiance of OSTA regulations (suggesting they need to spend some time on enforcement) or if the regulations simply don't exist.  Either way, the blind eyes are really starting to bug me.

Alex earned a trip

Last night, Alex earned a trip to Montreal for toileting success.  Over the last few weeks, he's gone from 1 success a week to four in the last 7 days.  I'm hoping this means we've gotten over whatever was blocking him, but I have to be cautious.

Alex has always earned the second half of his reward faster.  (For those who haven't been following, if he has a successful BM in the toilet, he earns a letter.  When he spells a prearranged word, usually 8-10 letters, he earns the trip.)  Most of us do better when we're closer to success than when we're at the beginning.  Incidentally, this is why many "reward" cards and programs start with an initial bonus, so that people can feel like they're well on their way.

We'll have to see if things continue to progress well when we start the next word.  This will be the first time with switching the reward to the alternating system (one trip to Montreal followed by a day at Fun Haven and riding OC Transpo).  If he does begin to drop back, we'll have to figure out if it's lack of motivation for the new reward or the usual early stage reluctance.

Caring For Others and Yourself

Over the last few months, we've been moving my grandmother into a care facility.  She has trouble with her memory and needs full time support.  Since I don't live in the same city, my responsibilities have been minimal, but it still got me thinking.

For the last several years, my aunt has been shouldering the increasing burden of trying to take care of my grandmother so that she could stay in her own home.  It's a big job and one that often involves needing to be patient with the person you're trying to help.

I can sympathize.  Taking care of an infant or small child is relatively easy (okay, maybe not, but in comparison, it is).  Society understands and there are numerous support mechanisms.  Plus, babies are generally cute (except when they're screaming endlessly, but that's another issue).

Having to put in that same level of care and sacrifice into taking care of a parent or an older child is harder.  And they're usually less willing to go along with the caregiver.  Dealing with incontinence, preparing meals that you know will be rejected, swallowing anger to explain something over and over, checking to make sure clothes are suitable, following up on the hundreds of daily tasks necessary to keep life rolling, it gets exhausting.  And unlike with an infant, there's no real end in sight.  For an older child, the care can and does stretch out for decades.  For an elderly parent, it can seem like all there is to look forward to is increasing responsibility until they pass on, which brings its own grief and guilt.

Workplaces don't understand needing to go to appointments, get to the pharmacy before it closes, or needing to take time to fill out application after application.  Most friends don't understand being too exhausted to go out (but those that do are the best, thank you!).  Spouses and other children can naturally resent the lion share of time and effort being sucked into an increasingly large black hole of necessity and need.  The judgment (you should have done x, y or z) builds up fast and can hit you when you least expect it.

Being responsible gets isolating.  Being responsible when there's no one else to take up the responsibility is soul crushing.  

That's why I urge caregivers not to give up the things which matter most.  Carve out time, no matter how hard it is.  Because otherwise, you will get chewed up and spit out by your responsibilities, and then you'll still have to crawl back to your duties.  Take care of yourself.

Immunization Challenges

I've been trying to arrange for Alex to receive his upcoming vaccinations through his family doctor instead of through the school.  He doesn't deal well with needles and crowds so getting jabbed in a gymnasium is not going to go well.  Sounds simple, right?

First, I tried calling my doctor's office and was told: no, we can't give him those vaccinations, you'll have to go through Ottawa Public Health.

Called Ottawa Public Health.  Left a message.

Got a call back 2 days later.  I wasn't in, so I missed it.  Had to call them back.

2 days later, they called back again.  This time I got it.  I had to speak to three different people, all of whom seemed to have trouble understanding what I was asking.  Including one gentleman who gave me a stern lecture on the need to vaccinate my child and how there was no link between vaccines and autism.  (For the record, I agree.  And for the rest of the record, I'm bloody well trying to get my child vaccinated!)  At the end of the call, I was told someone would call me back within the week with a date for a clinic I could bring Alex to.

Four days after that, I got a call from a woman who said she was going over my request and wondered if it wouldn't be easier if they simply released the vaccines to Alex's family doctor so that he could get them in a familiar environment.  I heartily agreed and she said they would send over the vaccines and my doctor should have them within a week or two.  I called my family doctor to alert them.  They said they'd call when the vaccines arrived and set up an appointment.

A month later, no word.  I call the doctor.  They haven't received anything from Public Health.  I go through another round of multi-day call backs and finally get told that due to the backlog of sending out flu vaccines and doing the vaccinations at the school, Alex's request has been shelved.  They'll probably be sent to the doctor sometime in December, maybe January.

And then, as a nice little final insult to injury, I receive a letter from Public Health threatening to suspend Nathan since they don't have a record of his vaccinations.  I've send the records in twice and received confirmation, but obviously the system can't be bothered to actually record that.

This is the sort of garbage that eats up time and energy which frankly, I could be using elsewhere.  Despite having begun this process in September, so as to avoid being caught up in the late fall/early winter backlog, I'm being told in no uncertain terms that my child is not a priority.  Given the challenges and public perception of a link between autism and vaccines, you would think that Public Health would be a little more active in helping families with autism who want to get their children vaccinated.  If I was less determined, this would fall by the wayside and just not happen, leaving a gap that could potentially allow serious diseases to return the way measles has.

It's frustrating to have to make five or six steps where one or two should be sufficient.

Sensory Santa Times Posted on Quickstart

It's that time of year again, the point where Christmas begins its undead rampage across an entire quarter of the year.  (I may have lost some of my Christmas joy after years of working retail... sorry.)

For those wondering, a Sensory Santa is an opportunity to bring your children to see a Santa who has been prepped in dealing with children with autism.  The lines are shorter, the elves will be restrained and the photographers have been briefed.  It's actually a really good experience for those wanting to allow their children to experience the fun of a Santa visit but are concerned about meltdowns.

Quickstart has Sensory Santa times at Carlingwood, Rideau, St. Laurent and Hazeldean.  The times are often before the mall opens or first thing as it openes, so that everything is controlled but it does mean you have to get up early.

We've done the Sensory Santa for the last couple of years and it's been a good experience.  Because only children with autism are allowed in to see Santa at that time, it's not as rushed as visiting during the regular season.

Mr Cranky Pants

Lately, Mr. Alex has been wearing his cranky pants.  Lots of complaining, lots of objecting, very little cooperating.  Which means he's been earning very little screen time.

It's been very frustrating.  No matter how hard I try to avoid taking it personally and remain neutral, a constant and grating chorus of "No " and "Mm-hmm" and ignoring my instructions wears me down.  Some days I just need him to stop talking and stop making it worse, but that's a hard concept for Alex to understand.

What can be even more frustrating is when those around me attempt to intervene and justify his behaviour.  "Oh, he's just trying to express himself" or "He just doesn't want to ".

A little tip for the world at large, if your words to a parent include "just" as one of the first words, that's dismissive of what the parent is trying to do.  (If you think a parent is being abusive, you should definitely intervene, but otherwise, think carefully about what you're saying.)

Here's the thing.  I know and recognize that many children go through whiny and complainy phases.  I know and recognize that it is a standard part of growing up.  I also know and recognize that I am holding my children to a higher standard than is typically done for children their age.

But here's the part that the rest of the world sometimes forgets: I am not doing this because I am a mean, drill-sergeant type parent.  I am doing this because I don't have the luxury of "letting them grow out of it".  My children will not grasp social niceties of when it is acceptable to complain and when it is not.  So therefore I have to give them a hard and fast rule: if someone in a position of authority tells you to do something, then complaining is not an option.  This is necessary if I ever want them to hold a job, interact successfully with the police or otherwise function in society.

Being the bad guy is exhausting.  Being the bad guy while enduring other people's judgment and constant complaining is worse.  But I still do it, because I believe it gives my children the best possible chance for their future, even though the cost to me is very high.  That's being a parent.

Finding Respite Workers

Yesterday I was speaking with a couple of parents who were having trouble finding respite workers to help them out.  If a parent doesn't have suitable family in the area, it can be difficult, but it's not impossible.

Finding someone who can give special needs parents a break is always a difficult proposition.  But as challenging as it is, it's also necessary.  Even if the "break" is having someone watch your child while you take a nap or read a book in another room, every parent needs some time when they're not in charge.

To deal with a child with autism, a respite worker needs to be steady, not easily freaked out, have a sense of humour and be responsible.  That usually lets out hiring the local 12 or 13 year old babysitters.

But there are other places to look:

Algonquin College's applied behaviour program and Ottawa U's early childhood education program.  The students in these programs want to work with kids, and, in the case of Algonquin, want to work with special needs kids.  They're reasonably mature and usually need part-time work as well as practical experience.  The downside is that they usually don't have independent transportation, which can limit their ability to help out.  You can place an ad on the "Jobs" billboards or contact the administration to be put in touch with students seeking work.

Local high schools.  To graduate, a student needs to put in 40 hours of volunteer work.  Respite work for a special needs family counts.  Ask the principal to give your contact information to students who are suitable and looking for part time work.

Scouts Canada and Girl Guides Canada.  The older groups (Venturers and Pathfinders) are of a suitable age and tend to be of a suitable temperment.  Again, contact your local leaders and see if they will put you in touch with potential candidates.

Educational Aides at your local school.  Ask the principal of your local elementary school if any of the educational aides are interested in working part time with your family.  An EA salary is fairly low, so most of them supplement their income with respite and tutoring work.

I've heard of some families who have success sharing a part-time nanny, but this is usually a more expensive and permanent option.  

And one final note, don't be afraid to fire people who aren't working out.  I hired one girl who came highly recommended by our local high school principal, but she would spend her time on her phone rather than interacting with the boys.  I felt very awkward firing her as I didn't want to burn my bridges with the school.  But I did and I quietly explained the issue to the principal and we're still on good terms.

If you find someone good who works well with your family, then that can be a great resource for the future.  We're past the stage of needing daily help, but I still have two respite workers who've been working with us for over five years now and who I can count on for babysitting and other help.

New Toileting Regime

Alex has not gone back to the toileting successes we had before the disruptions of the summer and the school and driver troubles of the fall.  So we needed to make some changes.

We're getting rid of the earning an overnight trip to Montreal by being clean.  He's never earned it, so it may be acting as a discouragement.

We're going to start rotating the big reward: one trip to Montreal and one trip to Fun Haven with a couple of hours on OC Transpo.  That should help with reward saturation.  (It's going to be a bit of hell of Dave and I, since neither of us do well at Fun Haven, but we'll suck it up and make it work.)

We're adding one more sit on the toilet session at the end of the day.  He's been having a lot of BMs in his room in the evening and we're hoping that a final toileting session will encourage it to happen in the toilet instead.

We still have to finish the current cycle under the old system, which may take another two or three weeks (or more).  Hopefully once we switch over, he can go back to having 3-4 successes per week instead of 1 or 2.

Remembrance Day

Today is Remembrance Day.  Today we honour those who have sacrificed to protect others.

I come from a proud military heritage, but today, I don't just honour soldiers.  I also honour police officers and ordinary citizens who have made the ultimate sacrifice to stand up against violence and protect those who needed it.

There is a lot of hate being spewed right now in a number of different directions.  It's horrifying how divisive the last two years have been.  How many newstories about people being attacked because they are different, because they had something that someone else wanted or simply because they were seen as easy targets?

I don't believe it is possible to shout out such things.  Instead, they can be extinguished by acts of kindness.  The act of making sure someone has food to eat and a safe place to sleep.  The act of smiling and talking with someone instead of being afraid.  There are dozens of things we can choose to do every day to break down barriers.

The horrible things in this world can also be stopped by acts of bravery.  And that's what I'm focusing on today.  On the boys who stopped another boy from raping an unconscious woman.  On the women who stood up to a bigoted ranter to protect his victim.  On the men and women who have stood between us and danger and told us: Don't worry, I got this.

Today is the day we can all remember that we can be braver than we imagine and sometimes all courage needs is a tiny spark.

Thank you to every man and woman who has donned a uniform and put his or her life on the line.  Thank you for your example.  Thank you for your courage.  Thank you for your sacrifice.

Update on Alex's Transport

It's been a couple of weeks of silence since I last heard from OSTA or the transportation company.  I had sent them letters outlining the situation and my position, to keep for their records, but so far no response.  Which is fine.  My goal in sending the letters was to make sure they couldn't claim to have been unaware of the situation.

The original afternoon driver is still picking up special needs kids at Alex's school (and presumably other schools) which leaves me with a bad taste in my mouth.  Due to privacy regulations, there's no way I can warn other parents to watch out for what she does with their children.  The company is apparently fine with her actions (or running out her contract).  But that is their decision to make and I know that this is not a fight I want to get into on a long term basis.

Alex's new afternoon driver is wonderful.  She's cheerful and Alex likes her.  There haven't been any problems with her.  

It's good to know that my situation is settled, but I have a sense of civic duty which prevents me from feeling entirely good knowing that I've effectively passed off a "lemon" to someone else.

No Santa Claus Parade This Year

First of all, apologies for the sporadic posting lately.  I seem to be hanging on to my organizational skills by my teeth and fingernails and I'm just not keeping up with all of it.

We had a logistical challenge this week.  Nathan has just begun curling on Saturday mornings and this Saturday morning is the Santa Claus parade.  For the last four years, Nathan has marched in the parade with his Scout group.

Dave and I were trying to decide what to do and it occurred to me that Nathan is getting quite mature and this is easily a decision he could make.

So we put it out to him:

- The Santa Claus parade is only once per year, and curling will be for 4 months
- The teachers are giving instruction each week, so missing a week will mean he'll have to catch up on what they've taught.
- Either way, we'll support his decision

He took a night to think about it and decided not to go to the Santa Claus parade this year.  He reasoned that there would still be plenty of Scouts to help out and he thought it was important to learn the new curling skills.

I'll admit, I probably would have had him do the parade, but I'm proud of him for making the decision on his own.

Can We Please Pick Something Else?

Alex has been having a rough time at school the last few days.  Lots of energy and trouble listening.  (And for those who think he's just bored and not getting enough activity, both of those days were extra activity days with skating and swimming.)  I'm guessing this has been prompted by two factors: increase in sugar after Halloween and a particular Wiggles video.

Alex has been having a lollipop in the evenings after supper from his newly acquired candy stash.  I don't think it's coincidence that his behaviour has suffered at the same time.

But I also think the Wiggles video is having an effect.  It's Black Velvet Band, the story of a prince who falls in love with a girl based solely on her hair accessory (note to world: not the best way to choose a system of government or a life mate).   Alex has been obsessed with the video, scripting it constantly and watching it over and over and over when he has screen time.

The video itself is probably not the issue, but when Alex shows signs of obsession like this, it tends to also be linked to times when we're having trouble with his behaviour.  So today I made him watch something different.  He complained but complied.  We'll see if forcing him to switch up his obsession will help break the pattern.  Sometimes it does, sometimes the obsession simply switches to something new and we're in the exact same situation.

Eternal Vigilance

Every parent is a professional worrier.  There's so much to take care of and whether you consider parents to be more puppetmasters or conductors, most of it falls squarely on one person's shoulders.

I try not to worry about the future, simply because there's so much to take care of in the present.  And frankly, the future scares the heck out of me.

Eventually, I will have to turn Alex over to people who are paid to take care of him, whether in a day program or a home.  As much as I might like to, I will not be able to take care of him myself for the rest of his life.  But the thing is, no matter how dedicated or caring the staff at such places are, at the end of the day, this is their job.  And there are going to be some who are in it because they want the money.

Now, I don't think they'll last long because caring for people with special needs is too hard to be worth the money paid.  But there will be some in that group who will stick with it because they can't find other work.  They will hate it and take it out on their charges.

We've already seen it with two of Alex's drivers.  One couldn't be bothered to give even rudimentary communication or deal with basic safety issues.  And the other actively tried to circumvent the regulations in place to protect Alex.  Those are people who only have to deal with him for maybe 15-20 minutes each day, and they were clearly unsuited to even that small amount.

How much worse will it be when he's in someone's care for hours at a time?  He's not going to be able to tell us if someone is frightening him, except by acting out, which will "justify" any punitive measures.  It's a perfect trap.

And it's exhausting to think about.

Sometimes It Creeps Up On You

Lately I've found myself feeling angry about things.  Not about the kids, but I'll remember an incident which happened years ago and suddenly I'll be even more pissed off than when it actually happened.

Two which have been preying on my mind are when a father picked Alex up to yell at him for knocking into his daughter and when another father began yelling at him during a visit to Cosmic Adventures and then accused me of being a horrible parent for allowing my child out in public.

Here's what I would have liked to say to them:

"You are an adult and you have just terrorized a special needs child.  I hope you feel proud of yourself for using your size to intimidate and pick on my child.  Maybe for your next trick, you can knock over a couple of kids in wheelchairs for hogging space on the sidewalk or attack them for moving so slowly."

Because there is no difference.  Attacking a child with autism for not picking up social cues is like attacking a child in a wheelchair for moving slowly on the sidewalk.  

But it doesn't matter.  Because I'm sure both of those fathers wouldn't care.  That's the problem.  Violating social expectations is something which will always make people upset, some of them will withdraw and some of them will get angry and attack the outlier.  They feel justified and in some cases, obligated to attack, lest someone think they are also an outlier.

I think I've been feeling angry about it because I'm tired of constantly being on guard.  I'm tired of wondering when the next blow is going to come and I'm tired of fighting all the people who insist that these things simply don't happen.  That people aren't offended when Alex breaks the social rules and that the world will just accept him as is because he's trying so very hard.

The world doesn't care about what you're trying to do.  They only care at what you fail to do.

Happy Halloween (Photos)

Another Halloween of fun and whimsy (and lots of work).

Nathan, little Whovian that he is, wanted to be the 11th doctor from Doctor Who.  I made him his jacket, bow tie and fez.

Alex reprised his role as Super Grover 2.0.  I had to make new gloves, a new sash and a new belt.  Luckily the muppet costume, the cape and the hat still worked.

We turned our front door into a TARDIS.  Which ended up being quite the crowd pleaser.  We actually got a few walk-ups during the day from people asking to take pictures.

We added a Dalek pumpkin to the mix.  That was honestly the most challenging part.  I used a toy wand for the optic rod, a glowstick for the firing arm and made my own (sort of) to scale plunger for the sensor.  Then we put it on a stool and wrapped the stool in bristol board, with circles covered with tissue paper.  With a light inside, it glowed and looked rather cool.

We finished off with pepper lanterns done as Cybermen.

Dave added his own touch with rotating disco lights, another popular choice.

The boys didn't do a lot of trick or treating.  Alex gave up after 20 minutes and Nathan did another 5-10 minutes after that.  Alex refused most of the treats being offered, which led to confusion from those handing out, and in a few cases, offense.  I got into an argument with my mother about whether or not Alex should be encouraged to simply politely accept the candy.  Given that most people don't recognize that he has autism, his "No" sounds more like a personal rejection.  This is one of those grey areas for autism behaviour.  On the one hand, he is expressing his preference (he doesn't like candy or chips) but on the other, he's violating the social expectation of the evening.  Since no one was expecting him to eat the candy, I felt that encouraging him to participate was the path of least resistance and most social acceptance but I got quite a strong resistance and didn't have the energy to push back against it.

Nathan's big moment came when we stopped at a house where someone was waiting all in black.  They triggered glowing red eyes and walked toward him, scaring Nathan quite a bit.  But, he didn't get upset and want to call a halt.  Instead we encouraged him to pull out his sonic screwdriver.  The man in black pretended to be grievously driven back which gave Nathan a great big grin.  Good fun all around.  He was also tickled when someone immediately recognized his costume and said he was her favourite costume of the night.  She gave him an extra treat for that.  

We ran out of candy around 8:30 at night and closed up shop.  We took down the TARDIS right away since a few people were trying to open the door on their own.  (Granted, the sign on the TARDIS does say to open the door for assistance, so I can understand the confusion.)

I always go through a lot of work for holidays for the boys.  But it's worth it for them to have something special to remember.

Picking and Choosing Opportunities

One wouldn't think that May would fill up too quickly before Halloween but we're looking at two competing activities for one of the weekends: Nathan's Cub camp and Alex's school trip. Alex's grade is going to spend a weekend at a camp and the autism class has been included in the invitation.  

We're waiting to hear if this is a parent-included event.  If it's not, then Alex won't be able to go since he needs a fairly high level of supervision.  But if it is, then we have a challenge in that neither Dave nor I are outdoors type people.  Nathan and Avi will be at Cub Camp, so the question is whether or not I can pull myself together enough to deal with Alex for two solid days of camping.

I'm glad the class is being included in these opportunities but I find myself wondering if they've really thought it through.  (Or if I'm not recognizing Alex's potential.)  I could see this being more stressful than fun for the kids.  And I could see it generating some resentment among their neurotypical peers, who are probably looking forward to getting away from parental supervision.

Lots of time to decide and figure things out.  But things like this are going to start coming up more and more as Alex gets older. 

Pushing Buttons: Dealing with Compulsion

This weekend we saw a resurgence in an old nemesis: button pushing.  Not in a being specifically irritating kind of way but in a literally pushing actual buttons kind of way.  Alex would run from the other room to push the buttons on the microwave, tried to push buttons on the cash register when we were out and tried to jump into a random car in the parking lot to push the hazards.

When this was an issue before, we used a two-pronged approach.  Certain buttons (cars, cash registers, fire alarms) were declared off-limits.  Others (microwave, elevators, etc) could be pushed but only after asking permission.  That let us be the guardians of "is this socially appropriate" and stopped the frenetic dashing to be the first to push.

If Alex failed to ask and pushed anyway, then he failed to earn a privilege such as going outside or getting a treat or having screentime.

It took about six months to extinguish the behaviour and we hadn't seen it for a couple of years.  We're going to try the same approach this time and hopefully it won't take as long.

I'm hoping this is a sort of behavioural aftershock from all the difficulties we've had this fall and not the start of a puberty-driven behavioural collapse. 

Update on help for Nathan

Since school began, I've been taking Nathan to someone he can talk to.  Last night, we were told that he seems to be doing fine and they don't see a reason to continue with regular sessions.

Maybe I'm just used to marathon level intervention, but this seems awfully quick.  And yet, I can't deny that Nathan is happier and having fewer issues than he did through the summer.

My only concerns are that Nathan does have a tendency to people-please, doing what he thinks people want him to do.  And he doesn't like sharing when things are bothering him.  I'd be a lot more confident if he was coming to me with his problems.

However, I remind myself that we can always go back if there's a problem.  It's not the end of the world.

I hope I really did just over-react and Nathan is doing just fine, thank you very much.  It would be nice if something was going well in our lives.

Update on Service Dog (Sort of)

I know a lot of you have been wondering what's going on with Alex's service dog.  We had initially been told that we would likely receive the dog in the spring or fall of 2016.  Well, the fall training for 2016 is over and we were not called in for it.

National Service Dog's website shows that they are no longer accepting applications for autism service dogs and that families who have applied should expect to wait 2 to 3 years.  

I've gotten unofficial confirmation that Alex is still on the approved list and that it will likely be another year before his name comes up for a dog.  However, there are still no guarantees for anything.

I have mixed feelings about this.  On the one hand, it is reassuring to have some kind of response, even an unofficial one.  On the other, I really need to find some alternatives to help Alex.  I can't count on this latest estimate being accurate and lose another year or two in waiting.  I'm just not sure what alternatives to look at.

We were hoping the dog would be a tool to provide more independence for him.  There's not really a substitute for this, we'll just have to continue to supervise.

The dog would provide a visual signal that Alex is different, cutting down on confrontations.  Again, not a lot of good alternatives.

Alex is lonely and could use a friend, but isn't socially up to making them.  This is the real key for why we wanted the dog, and is still a difficult option.  We've done the arranged "playdate" thing and it doesn't work out.  I'll have to do some more thinking and see if I can come up with a new set of ideas.

Review of "The Accountant" (Spoilers)

Last night Dave and I went to see The Accountant with Ben Affleck.  Affleck plays an autistic savant who works with criminal organizations to track down their money and also happens to be a highly-skilled martial artist/assassin.

Affleck did a good job of portraying someone with high functioning autism and the child actors did a great job at showing low functioning autism in the flashback scenes.  The film is a typical action movie set up, so those who enjoyed movies like John Wick and Taken will probably enjoy this one.

I didn't.  At least, not entirely.

What stopped me were two things:

1) Affleck's character's father turns down a place for his son at a facility dedicated to helping children with autism.  The facility is offering child-based behaviour therapy to teach the children to function within the neurotypical world.  The father insists that he won't have his son "coddled" and if he has sensory issues, then he should be exposed to bright lights and loud noises to build up his tolerance.  (This is a horrible, horrible idea and the equivalent of trying to build up someone's tolerance for torture.  It just does not work.)  The father also puts his children through martial arts training that would make Batman wince.  It's violent and abusive and made it hard for me to enjoy the rest.

The movie's implication is that the father's harsh treatment worked.  Affleck's character goes from very low functioning to high functioning, while the other children at the center become low functioning adults.  That just makes me cringe, especially with the implication that if people with disabilities and mental health issues aren't "coddled" by accommodations, they achieve more.

2) Both adults with autism are portrayed as savants.  Savants are actually quite rare in autism.  While kids may show expert levels of knowledge or skills, it's obsessive practice, not a superhuman ability.  Affleck's character is able to do things that people simply wouldn't be able to do, even with practice, making him a savant.  Perhaps it's my own cynicism, but I get a little tired of the superhero in disguise approach to special needs kids (they're psychic, they're savants, they're trapped behind an inability to communicate).  Most kids with autism do not have special skills to offset their difficult lives.

No one would suggest making a movie where someone who is paralyzed is refused a wheelchair by a parent and then goes on to both walk and become Superman.  I don't think it should be done with autism either.

A Great Day at the Museum

Nathan's class has been studying rocks and minerals and his teacher suggested we go and see the Earth exhibit at the Museum of Nature.  Seeing an opportunity to let Nathan show off his knowledge and reinforce what he'd learned, my dad and I took him to the museum on Sunday.

Nathan had a lot of fun, particularly with the over-the-top videos explaining the different ways rocks metamorphose.  (For those who remember the energy drink ads of the early 2010s, it's something like that but explaining how heat, pressure and impact can transform rock.)

There were a number of interactive displays.  Nathan got to build his own volcano and was quite excited when it created a pyroclastic flow and destroyed the little town at the base.  He then tried building another one and created his own chain of islands.  

There were a couple of touch and go moments.  Nathan wanted a box of water from the cafeteria, but (as I anticipated) only drank a little before saying he was done.  I made him carry it home, which he wasn't happy about but eventually complied with.

It was a fun day.  We stopped by the Water exhibit and the dinosaur one as well but spent most of the time in the Earth exhibit.  It's nice to be able to go through the museum and actually look at things rather than blasting through at Alex-speeds.  

Tough Decision on Screentime

I've noticed a pattern lately.  If I give Nathan more screentime than about an hour a day, he is very agitated and easily upset for the next day or so.

Now he is "earning" unlimited screentime periodically for keeping his temper and otherwise doing good work.  But we're paying for it after.

This leaves me with a challenge.  It's a big motivator, so I'm reluctant to take it out of the rotation, but am I really doing Nathan any favours by setting him up for such spectacular failures?  Case in point: yesterday he earned unlimited screentime.  Today he threw a big tantrum about tidying his room and lost not only his screentime for today, but for the weekend.  And came close to having the contents of his room confiscated.

I remember that the first biography/case study I read of a child with autism had a similar problem.  The kid loved videos but they got him so agitated that the family decided to only allow him one video per year, at Christmas.  And they paid for that indulgence every year well into January.

Sometimes what our kids want is the equivalent of a brass ring.  And sometimes it's the equivalent of heroin.  And not even the most progressive person in the world has ever suggested that we ought to encourage drug users to do useful or helpful things in order to earn drugs.  Figuring out which is which is a challenge.

Driving Dilemma: Ray of Hope

I spoke to both Alex's teacher and the driver about what happened on Tuesday and got a rough timeline of events.

The transport company didn't notify the school that there would be a temporary driver until after 2 pm (after they'd spoken to me).

That temporary driver went to the wrong part of the school to pick Alex up.

The teachers and EAs, knowing that driver 2 would be the regular driver, thought that they must have had the start date wrong.  Driver 2 did not have our address and was trying to reach the transport company to find out what went wrong.

(This is the point when they should have called me as a parent to make the call as to having driver 2 take Alex home or have me come to pick him up.)

After twenty-thirty minutes, Driver 2 got the information she needed and set off to bring Alex home.  Alex was quite upset at this point and Driver 2 was in a rush as she had another run she needed to do.

After Driver 2 left, the temporary driver arrived at the correct pick up location and asked to pick up Alex.

So, the greater part of the problem lies in the transport company's terrible communication, an ongoing issue.  But the school should have contacted me rather than trying to solve it themselves.  I gather things got rather tense and the VP has instructed the teachers to contact me rather than deal with any driver issues themselves.

On the plus side, Driver 2 called me personally to talk about the situation, apologize and find out about Alex.  We had a good conversation and I'm confident in her ability to deal with him.  I'm still filing the letter with OSTA, the school board and the transport company, because what happened was absolutely inexcusable and needs to be on record.  But hopefully this is the last time I'll have to worry about it.