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.