Thursday 30 November 2017

Leftover Enhancement Tactics

As a result of last week's IEP meeting, we're now sending leftovers in Alex's lunch again, in the hopes that if he's not as hungry, then his behaviour will be less of a problem.

We stopped sending leftovers last year, because we were told that the EA who supervised lunch didn't have time to make sure that Alex actually ate the food.  We kept getting them back, uneaten, and it began to affect his ability to eat his dinner.

They've said they will encourage him to eat this time, using the same low-key techniques that we do.  First the leftovers, then preferred food, and using a reward for finishing all of his food.  

And if they don't, I have a backup.  When Alex gets home, I'm checking his lunch box and if the leftovers are still there, I supervise him eating them before he gets screen time.  I'm not sure if this will translate to him eating them at school, but it's the only tactic I have access to right now.

Wednesday 29 November 2017

Public Access Test Next Week

We just got word that NSD is coming next week to do our Public Access Test with Lynyrd.  Usually, this happens a few weeks after training but I guess it's been hard to set up a trip to come to Ottawa.  Last time there were multiple families from Ottawa at the training, so I think it was easier to do.

I'm pretty nervous about it.  Lynyrd does very well with commands but I worry that I haven't spent enough time working on the various aspects of the test.  Also, since I didn't do the official practice test, I think that has also affected my confidence.

There are two areas I know will be tense:

- the food drop/refusal (Lynyrd is quick and while he doesn't lunge at food, he's still a dog)
- ignoring toys, especially if in motion 

We're going through a higher toy budget than food budget for him, since he goes after Alex's toys if he doesn't have a toy of his own to play with but he destroys them, sometimes in minutes, but rarely lasting more than a few days.  This was not one of the expenses I'd budgeted for in planning for the dog.

In the end, I remind myself that NSD wants us to succeed and this isn't a nasty attempt to "catch" us in a minor technicality.  They want Lynyrd and our family to do well.

Monday 27 November 2017

IEP Meeting

Last week, we had the review meeting to go over Alex's IEP and I have mixed feelings about it.

On the one hand, the staff were open and honest, asking good questions.  While I was there, I really felt like we had a partnership.  But I'm still sensing an underlying discomfort with the whole process.  And I still feel there's a bit of a disconnect about how certain actions can encourage difficult behaviour.

To illustrate, last Wednesday, Alex and his class were going to a movie.  I'd sent a message to the school explaining how we make movies with Alex work: frequent edible rewards and careful control of the elevator being two key points.  At the IEP, the teacher shared that they instead gave Alex regular breaks to leave the theatre (every 10 minutes or so).  He had a bolting incident and lost access to the elevator.

Their system worked, so I can't really argue, and it's naive of me to expect them to do things exactly as I would have.  But one of the reasons that we don't use breaks is that it isn't particularly socially acceptable to be constantly getting up and down from your seat while at the movies.  Alex is capable of sitting still, particularly if he's allowed to fidget.  And going in and out of the theatre increases the chance that he's going to bolt for the elevator.

None of these things are exactly catastrophic and maybe I'm the one who has too severe an expectation for Alex.  Maybe movies would be more enjoyable for him if we did it the way the school did.  But I can't help but feel that using those kinds of breaks isn't really compatible with the point of going to the movies.

It just leaves me feeling on edge, wondering if I'm missing something or if they're missing something or if we've both missed something.

We'll see if the new IEP is any more reflective of what Alex needs.  And what his behaviour does.  

Thursday 23 November 2017

Speaking Of Important Things Not Getting Done

As you can guess from yesterday's post, I've been struggling, but it's not just on the personal side of things.  I've also been struggling at work.  Despite increasing my hours and having our other admin help to take over some of my duties, I'm still falling behind and sometimes people are having to go more than a week without a response from me.

Not doing the work I've been entrusted with and paid to do really bothers me.  As a child, I listened to my father complain about staff who would leave promptly at the end of their day or not take the extra time to ensure that their tasks were done above the minimum specifications and I've always striven to be the kind of employee that people can rely on.

But like I said yesterday, sometimes it's just not possible to do it all, no matter how good your intentions are.  There are limitations.  It bothers me a great deal and causes me a lot of stress, but I truly can't see how I could get any more done.

Wednesday 22 November 2017

The Trouble With Platitudes

First, I'll start with an apology for having been snappish with those who have been genuinely trying to be supportive over the last few weeks.  I've just reached a point where I have little to no patience for the usual platitudes of advice like "Take care of yourself first" or "Just try to do a little at a time" or "Try not to worry about things you can't change."

Sayings like that are saying for a reason.  They're good advice and will help in probably 99% of situations.  But there also comes a point where they don't and frankly, I'm there.  Pretty much all of the standard platitudes depend on a single premise: that whatever you are facing is not as bad as you think it is.

If a person is worrying obsessively, then telling them to take a mental break is good.  If they're overwhelmed, breaking down the tasks into manageable bits is good.  If they've gotten worn down by dealing with various things, then telling them to take care of themselves is good.  

But here's the thing.  I have already contracted out every task and chore that I can.  I have a whole staff of people whom I pay to help me, plus a number of volunteers.  (And to be clear, I'm not supporting a whole mass of people, but it's a significant portion of my monthly budget.)  There is nothing left that I can ask them to do.  Everything else has to be done by me.  And the financial stress of paying for all those people, not to mention the mental stress of having to coordinate everything, adds its own burden.  There comes a point where it is no longer beneficial to ask for help, so pushing me to keep asking is ignoring the reality.

I'm exhausted, but I'm exhausted in part because I've chosen to sacrifice sleep in order to have time to write.  That's a choice I've made because it is more draining and demoralizing for me to have to shut off my creativity than it is to stay up late.  And this isn't something that I can fix by reshuffling schedules or working harder/smarter.  There is no other time that I can make work and I've had to face the reality that I don't sleep well anyway if I don't write.  So I am taking care of myself but it is still not enough.  And I'm not being stubborn or trying to be a martyr, it's a reality.

The other reality is that some stuff is just not going to get done and since I've already farmed out all the minor things, that stuff is going to be important and missing it is going to have major impacts.  But I simply cannot do it and so I've had to accept that.  But prompting me to keep trying or pushing me to do more because what I'm failing to do is important isn't helpful.  It's only a reminder of something that I already know and have made a difficult decision about.  Decisions that I don't want to explain or justify because unless someone has stood where I'm standing, they don't understand how those decisions work.

There is an inherent optimism to platitudes (as there has to be since they're supposed to encourage us), an optimism that is really hard not to take offense to when a person has done all of the steps that they can and things still are not working out.  They gloss over the inherent unfairness of the universe because the truth is that bad things do happen to good people and sometimes, no matter how hard you try, success isn't an option.  

I think the most frustrating part about getting platitudes is that it makes me feel as if no one is actually listening, or worse, that they just want me to shut up and stop making them have to be aware of the problems.  They want to continue with the illusion that everything is going to be fine and that everything is ultimately fixable, and I'm an inconvenience to that illusion.

I recognize that the intentions are good, which is why most of the time, I just smile and nod and accept the message as its intended, as an expression of caring and good wishes, even when it is painful.  But of late, I haven't had the energy for that and I'm sorry for those who have gotten hit by my temper.

Friday 17 November 2017

Sick Days

Last night ended up involving a stomach bug and a lot of laundry, so today is now a sick day.

The question I usually have as a parent: my kid usually isn't curl up and sleep sick, so what do I do?  And now I have an answer: media reviews.

I'm allowing Nathan to watch TV on Netflix and Crave, whatever he wants (within appropriate content limits) but at the end of each show, he's got to write a 3-4 sentence review of the show or movie.  Practice with his handwriting and composition, which he needs.

I can even see this working somewhat for Alex, though I'd probably have to make it more like a questionnaire.

We'll see how it works out.

Thursday 16 November 2017

More Managing Depression

Last night, I caught myself falling into old patterns with Nathan.  He's always had a tendency to the dramatic, so I've tried to discourage him from grand gestures of self-punishment (I won't watch the movie and then you'll be sorry kind of thing).

We were finishing up the bedtime routine and Nathan had been increasingly agitated during his shower.  Dave got frustrated and told Nathan to dry himself.  Nathan got upset, saying he didn't know how to do it (not true, but his perfectionism anxiety can come up when he's stressed).  Dave explained: take the towel, rub it on the wet spot until your skin is dry, repeat until there's no more wet spots.

Nathan responded: But what if the dog is wet?

This is the point where we both lost our tempers somewhat.  Dave left and I scolded Nathan.  I told him that this is why it was hard for us to teach him things and trust him when he asked questions, because when he asked pointless questions like the dog one, it showed us that he wasn't interested in our answers, only in wasting our time and delaying what needed to be done.  (Not my finest parenting moment, but could have been worse.)

Nathan stomped off to his room to get his pajamas and then shouted that he wasn't going to see a Text From Superheroes because he didn't deserve it.  (He had already been told that we couldn't do a video because he'd taken so long in coming upstairs for bed and getting ready for his shower.)

This was where a red flag went off in my head.  While I still think there was an element of wanting to delay bedtime, this was also an expression of self-harm.  Nathan was punishing himself for having caused us to lose our tempers (re-affirming the negative thoughts in his head that he is not a good kid).

So we sat down for a chat, which was hard because I was still angry at his delays.  I needed to unpick the delaying tactics from the self-harm stuff.  I'm not sure if I managed it, but this was what I tried: 

I talked about how cooperation is a sign of respect and how lots of joking around can make people feel disrespected and then angry.  I made him tell me why he had asked the question about the dog.  I'm not sure if I believe his ultimate response (trying to make a joke) since it was preceded by an attempt to make me believe the dog's level of wetness was of crucial concern and an integral part of the post-shower process, as well as a lot of shouting about how I was just mean and didn't want him to ever have any fun.  I pushed him to recognize the "I don't deserve it" as both irrelevant and a lie.  People don't get nice things because they deserve or don't deserve them, they get them because that's part of how families, friends and society works.  We forgive each other for not being perfect all the time and for making mistakes, even if those mistakes hurt us, because we need everyone else to understand and forgive when we make mistakes.  And making a mistake or telling a joke that wasn't funny isn't something worthy of punishment.  Grown ups, even professional comedians, do that all the time and as long as they can understand and apologize, then we accept that it was a mistake and move on.  It only becomes a problem when the person who made the mistake tries to insist that everyone else's feelings are wrong and stupid.

I probably could have done better but as an off-the-cuff parenting performance, I think it was reasonable.

Tuesday 14 November 2017

Request for an IEP meeting

It's been very slow getting responses from Alex's school for my request for a meeting to discuss the IEP.  I sense wagons being circled, which makes me doubly disappointed as they've been the ones pushing us to wait for the IEP to discuss anything.  It also makes me wonder if we're really going to get active cooperation.

I find myself instinctively reviewing my actions to see if I've been unfair or overly aggressive.  Have I rocked the boat when I shouldn't have?  But the reality is that I don't think I've been unduly pushy or difficult.  Last year, I provided outside resources, I lost income to volunteer on field trips, and in general, bent over backwards to make things better for the school.  This year, I don't have those same resources, though I'm still providing access to Alex's support network.  I think a certain amount of frustration on my part is only fair.

I just wish I knew what the blockage was.  Are there bureaucratic issues that we don't know about?  By reporting this, are we risking someone's job status?  I really don't want to be a bad guy here, and I don't think the teacher and staff are bad guys either, but there is something stopping this from becoming a full partnership and until I know what it is, there's no way to deal with it and I'm going to continue to be on guard.

Monday 13 November 2017

Planning For Disney

So it's official, the Mackintoshes are once more headed to Disney.  This time it's going to be a different scenario.  My parents and my sister and her partner are coming with us.  (Or more accurately, my sister and partner and me and my family are going with my parents.)

Unfortunately, we got started too late to get Cinderella's Royal Table reservations, so Alex will have to be satisfied with the free range princesses in the park.  (That sounds way worse than I mean, but I'm going to leave it in here.)  

Now we'll have to do the herding cats experience of getting people to commit to a plan of sorts so that we can organize the FastPasses.  

Thursday 9 November 2017

A Study In Contrasts: Schools

Yesterday, I had a long sit down meeting with Nathan's teacher.  He's been showing signs of depression at school as well as at home.  She showed me an art project that he's been working on.  He's torn it up and thrown it in the garbage twice, and she's rescued it.  He's been doing similar things at home.

We talked about strategies that I've begun using at home: getting him to journal his feelings, and then doing a "truth check" to identify the lies that depression tells us, followed by verbalizing the actual truth.  I've also been trying to build in an automatic pause when he has a destructive impulse, so I suggested he have access to a folder where he can put his projects if he wants to destroy them, but then he has to wait 24 hours.

She was very kind and compassionate.  She listened and made notes and when I brought up something that surprised her, she asked questions.  (She had talked about how inclusivity was a big part of this year's curriculum and I pointed out that sometimes those campaigns can make children with disabilities or challenges feel more isolated.  Kids want to be the hero, not always the one needing to be rescued.)

Yesterday, I also got a note from Alex's school about my request for a meeting to discuss the IEP.  Mainly how they would like to squish it in to a 30 minute parent-teacher interview, which I don't think will be enough time.  (And I discovered that policy discourages third parties from attending parent-teacher interviews, so it would be a challenge to include our education advocate.)  They've been fairly good in the past about having meetings, but often the message has been: wait until the IEP is in and then we can make any necessary changes.  Now the IEP is in and I can't help but see this as reluctance.

Both boys are undergoing some fairly serious issues.  With Nathan's teacher, I feel confident that her focus is on figuring out what Nathan needs and forget the bureaucracy.  With Alex, I'm not sure what's going on.  I've done my best to be as supportive and transparent as possible and I still keep running up against this resistance.  There is something I'm not seeing, some problem which underlies everything but which is either taken for granted or hasn't been identified, but it's undercutting our efforts.

I wish I knew because I have a lot of respect for his teacher and the staff at the school, especially the learning support teacher who has been coordinating everything.  I get the feeling that they genuinely want Alex to be successful and care about his well-being.  It's frustrating because he's capable of so much and we've worked so hard to get him where he is and since September 2016, it's like we've been having to fight to keep those gains from being eroded instead of being able to put our efforts behind him moving forward.

Wednesday 8 November 2017

A Visit To the Dentist

I was hoping to post this on Monday, but we've had technical difficulties with the computer at home.

Alex went to the dentist last week and did very well.  He was squirmy, so they put an Xray blanket on him and he settled down.  (Big change from needing to be strapped down in the papoose board.)  Lynyrd did well and Alex used him for some visits when he was getting overwhelmed.  They were tethered together and there were no issues with using the tether.

The bad news was about his teeth in general.  Or rather, specifically his bite, since the teeth are in good shape.  Alex's front teeth have been pushed forward at an angle over the years because he sticks his lower lip up underneath them.  It's something we've talked to the dentist about before and discussed what our options would be as Alex would likely not tolerate braces.  The dentist had mentioned the option of a surgical correction, which would be painful but over very quickly.

We hadn't decided on it one way or another yet.  It's a lot of pain to put someone through for what is essentially a cosmetic correction.

However, now it won't be an issue.  The dentist confirmed that the problem isn't Alex's teeth, it's his bite.  Specifically the fact that his lower jaw is too small and is too far pushed back for his upper jaw.  (I had a similar problem when I was a child, so I suppose I shouldn't have been surprised.)  His lower jaw needs to be brought forward and possibly expanded, which they would normally do with a mouthpiece appliance.  The dentist didn't want to discuss it as an option, which bothered me.  (It would bother me more if we didn't see a different dentist every time we went in there.  It's always the same hygenist, which is the important interactive part, but the dentist is always different.)

We're actually looking into the same issue with Nathan.  So I'll have a chance to talk to the specialist and find out what we're dealing with.  Bad news   it's going to be expensive and we don't have the fancy dental coverage.

Friday 3 November 2017

Time To Meet The Teachers (And the 1, 2, 3's of IEPs)

Mid to end of October is when the IEP (Individual Education Plans) come out, so early to mid November is when I meet with the teachers.

There is still a lot of work to do with Alex's IEP, beginning with the fact that they don't have several key reports listed as resources.  For those who haven't had to deal with the bureaucratic labyrinth that is the IEP (or those who just sign it and send it back the way I used to), there are a lot of potential minefields laid within it.

First, this is the document that any new teacher, staff or aide is supposed to refer to when coming in to work with your child.  (I'm not sure how much that actually happens, but this is the official "buck stops here" reference.)  So, assuming that the staff got wiped out in a freak balloon-related incident, the IEP is what the new teacher, aides and learning support staff would use.  My practical understanding is that most of the information ends up being transferred verbally anyway, but it's important for parents to realize that those verbal notes that they agree to with their child's teacher need to end up in the IEP.  Otherwise the school is under no obligation to continue to support a verbal agreement.

Second, the IEP uses its own language which is closer to legalese (which is not English despite using many of the same words).  Because of this, it can be hard for a parent to figure out what the IEP is referring to and what they need to pay attention to.  I'd been told that I needed to focus on "page 3" which is where the school lists out the individual accommodations, so that's where I've put most of my energy.  I didn't realize until last year that I also needed to go through the list of reference documents to make sure that the reports I was giving to the school were actually making it into Alex's file.

Third, the IEP is what will be used to determine your child's pass/fail point.  Alex "failed" last year due to his lack of cooperation, which was a direct result of how the behavior issues were managed.  Using the IEP, his tutor was able to demonstrate that Alex was capable of achieving all of the goals listed in his IEP, which helped me to establish that the issue was behavioural, rather than a lack of capacity.

Fourth, there are many things which are not part of the IEP but which need to be connected to it: like Alex's safety plan.  Since IEPs are only reviewed two or three times a year, documents which need more frequent updating can't become part of them.  But if they aren't referenced, a family can run into issues with point one in this post: if it's not in the IEP, it may or may not exist in the school's mind.

I suspect this will be a long process of making sure that Alex's IEP ends up being where it is supposed to be in order for him to have a smooth transition to high school next year.  And maybe it's just the depression and exhaustion speaking, but my goal for this year is not for Alex to improve but just for him to not be put in a situation where he will get worse.  It's rebuild the foundations time, not move forward time.

Added into the bureaucratic challenge of Alex's schooling, there's been a soft beep of alarm from Nathan's school as well.  His teacher has asked me to come in and meet to discuss strategies.  She's said that he's doing "academically well" and not to worry, but I am worried that "academically well" means that other areas of his schooling are not going well, like social and behavioural.  I'll find out next week when we get a chance to talk.

Thursday 2 November 2017

Free Workshop on November 4th

Quickstart Autism and Coordinated Access are doing a free workshop for parents/guardians of children with ASD that are under 5 years old, recently diagnosed or who are concerned about their child's development.

Véronique Chiasson, Occupational Therapist and Certified Early Start Denver Model Trainer will be teaching strategies to engage with your child, teach communication skills and manage challenging behaviours using the Early Start Denver Model.

When: Saturday, November 4th, 2017 from 9:30am until 11:30am. (English session)
Saturday, November 4th, 2017 from 1:00pm until 3:00pm (French session)

The Chateau Neuf Room
Bob MacQuarrie Recreation Centre 
1490 Youville Drive, Orléans, ON K1C 2X8

Those interested in attending this workshop, please email to let them know which one.

Wednesday 1 November 2017

Another Day, Another Box of Stolen Pens

Points to those who get the Simpsons' reference.

Last night was Halloween and it was pretty much the most understated Halloween I've ever done.  Partly because of me being away, and partly because there's been a lot of other stuff going on that had to take priority.  It makes me feel bad, because Halloween is special to kids and has been to our family in particular.  But at the same time, I'm too tired to really care.

It's been difficult since I've been back.  I'm just as frayed as when I left, so my temper isn't where it should be.  I've found that a particular trigger lately is what I call "making my job harder than it needs to be."  I have to handle the vast majority of what needs to happen in this household and so it really frustrates me when I don't even get the minimal cooperation needed to keep me from having to redo work over and over again.

Simple stuff like: when I've managed to clear the clutter off a surface (table, freezer, kitchen island) and other family members immediately begin to dump more stuff on it.  (This particularly pisses me off when that stuff has its own place, usually near to the dump site.) This is really frustrating when I'm clearing it for a purpose, like setting the table for supper or so that I can do my work.  Or asking me to do something or help with something and then "remembering" a dozen other things which need to happen first.  

It's not fun at the best of times but usually, I grit my teeth and go on.  If it's the boys, I'll prompt them to put away their things (Alex is particularly prone to leaving small stashes of stuff all over the house).  But lately, it's been rubbing me really raw.  I'm frustrated that I haven't been able to use the comfortable chairs in the front room for over two months because toys and other stuff has gotten piled up in them and no matter how often I put those things away in their place, more stuff appears almost immediately.  I'm frustrated that when I mention it, I'm told that there's no place to put away the toy bins, which is because people have tossed random stuff onto the shelves where the bins are supposed to go instead of putting that stuff into the bins.  If I suggest stuff gets put away in the proper bins, I get complaints about how the bins are hard to find, since they get buried under stuff or have so much miscellaneous stuff in them that the kids just dump them out in order to search for what they want (and that stuff ends up on the floor and doesn't get picked up).  If I try to get them to do a general tidy up, I get tons of complaining and need to direct them toy by toy.  If I don't push the tidy up, then I have to pay the housekeeper to do it and she can't do other things that I need her to do.  If it doesn't get done, then I get crap for the fact that the house is a mess and "why should I bother cleaning up my stuff if the house is a garbage dump" attitude.

One can see why this is emotionally escalating.  There's really no way for me to even maintain minimum standards without the rest of the family's passive cooperation.  And it feels like this is happening in a lot of areas.  I don't have the support to do the small, every day changes and then I have to choose between fighting the small fights or fighting the big ones and either way, I know that no one is going to pick up the fights I can't fight.

I'm all too aware that letting things slip makes it much harder to pick up, leaving an oppressive future burden to hover over me.  And I've tried to be polite when people point that out to me in an effort to be helpful and motivational.  But sometimes it doesn't matter how useful and necessary a task is.  Sometimes there just isn't the energy or time to get that task done, even though not doing it will have a higher long term penalty.

I read an article many years ago about the challenge that typical families have in understanding families who are dealing with extreme poverty.  For a typical family, financial difficulty means cutting out "extras" like take out or shopping.  That's a dynamic they understand.  They have trouble understanding how someone can be "stupid" enough to buy an item for $5 when there's a three pack of that item for $12.  It seems like a clear cut decision, the three pack is cheaper per item, leaving $3 to spend on other stuff.  And when every nickel counts, having $3 can be stretched a long way.

Unless you don't have more than $5 and need the item.  The person is very aware that it would be cheaper in the long term to buy the three pack and that by having to spend $5 now, they are perpetuating a cycle that means they won't have the $12 to buy the three pack in the future, condemning them to spend more money than they could have in a situation where that money could be critically vital to have elsewhere.

Right now, I don't have that metaphorical $12.  I don't even really have $5 but I'm scraping together $4.50 on a payment plan and hoping that I'll get lucky.