Monday, 11 December 2017

The Controversy Over "To Siri With Love" - My Thoughts

It's taken me awhile to feel emotionally ready to tackle this subject which has been blowing up the autism corners of the Internet over the last week.  To start, a mom wrote a book about her autistic son called "To Siri With Love" which has been getting good reviews.  Then adults with autism began to call for the book to be boycotted, saying it was hurtful to the autism community.  The author has responded and the angry words have been flying hard and with considerable venom.  I'll recuse myself right away that I haven't read the book and have no intention of reading the book.  This is purely about my reaction to the Internet frenzy about the book.

And that frenzy has been really bothering me.  I generally support the right of marginalized people to share their own stories and recognize that portrayals of autism in media are often inaccurate and promote more stereotypes than useful information.  However, despite not being a direct target, I feel personally attacked by the #BoycottSiri and #ActualAutistic threads for several reasons.

1) The higher-functioning autism community have a tendency to ignore the lower functioning people or pretend they don't exist.  This feels like another example of that with lots of posts about how "autistics" don't do X, Y, Z.  Except that in the lower-functioning ranks, they do.

2) This book is a memoir, talking about the author's experience as a parent.  Many of the attacks are focused on her parenting choices and fall along the lines of "how dare a mother say that it's hard to parent a child with autism."  Society still judges harshly when a mother says anything except how blissfully fulfilled she is about her children and I find that is even more stringent when the child has special needs.  The attacks are silencing on parents, who frankly need to have the right to talk to each other and the world just as much as their autistic offspring.

3) The debate is being framed as "if you're not with us, you're against us" with no room for nuance or actual conversation.  If you don't wholly agree, then you are a horrible person who hates autistics and deserve to have horrible things happen to you.  The level of personal attack is quite high and completely uncalled for.

I'm sure plenty of people will already be angry over what I've just written but I'd also like to break down some of the more common critiques, to illustrate my points.

The rants mostly seem to be being led by one blogger (whose post is linked above) who asked for a review copy and then describes herself as being so angry that she vomited.  Particularly about the following points:

- the mom describes her child's speech as incomprehensible
- the mom describes toilet training as difficult
- the mom says her child has difficulty with empathy and theory of mind

According to the blogger, all three of these things are myths which never happen to autistic people (that's another big complaint of the blogger by the way, that the mom refers to her "child with autism" instead of her "autistic child" which the blogger finds personally insulting.)  Going back to the actual list of complaints, plenty of children with autism have incomprehensible speech when they first get started, have extra trouble with toilet training and have difficulty both in reading and predicting other people's emotions and in recognizing that other people may have different reactions and emotions than themselves.  The latter two points are even supported by the blogger at the same time that she lambasts the author for having dared to say it.

Then there's the attacks on the author's parenting, for having shared anecdotes about toilet training, her child's fears, and even some of the mean descriptors her child has faced.  These complaints have nothing to do with the autism community and could be applied to any parent who blogs, tweets or Facebooks about their child.  The blogger may well feel that it is inappropriate under any circumstances but to frame the sharing as particularly damaging to those with autism strikes me as a weak argument.  

And then there are the attacks on the mother's fears for her child's future.  She talks about concerns about him being able to have a relationship, worries that he may be taken advantage of, might get someone pregnant, and mentions seeking medical power of attorney so that she can deal with doctors and possibly arrange for a vasectomy to avoid further complications.  As much as I can appreciate those who are high-functioning feeling threatened by such statements, these are real concerns when dealing with someone who is lower-functioning.  So yes, it may be possible for him not to have a "real" relationship and still get a girl pregnant.  And the mother would be irresponsible if she wasn't thinking about such possibilities and how to deal with them.  

There are many more points I could use to illustrate.  And maybe the book is just as offensive as they claim.  I can't say, having not read it.  But I can say that every single example being cited falls under the same categories: pretending lower-functioning people with autism don't exist and assuming that everyone with autism has the same abilities and desires as higher-functioning autistics; and attacks on parents, getting angry at them for expressing hardship, doubts and fears.  And I've been doing a lot of searching, hoping to find a smoking gun of offense that would justify the anger so that I wouldn't have to feel attacked.

This isn't an #OwnVoices matter.  The voices of those with autism are not being suppressed or supplanted.  This is the voice of a parent, which is an #OwnVoice.  And yes, she's not claiming that it's all sunshine and roses and "autism is the best thing that ever happened to our family" to make for an inspirational story.  She's talking about the hard things that polite society likes to pretend don't happen.

If this backlash had been framed as "that may be her experience, but this is ours" or presenting anecdotes from those who identify with her son in order to illustrate the many different ways people experience autism, I would be promoting those stories whole-heartedly.  But that's not it.  What I'm hearing is anger and "sit down and shut up" directed at parents.  I'm hearing "How dare you be human?  How dare you have an opinion?  How dare you try and share your own experience?" and that's not okay.

Parents of children with autism already get a lot of crap from the general public, the government, the schools, and any number of other places.  It looks like we can also expect it from adults with autism as well, for not doing enough and for doing too much.  For not being omniscent, perfect beings.  (And now I'm overstating and simplifying, but that's how this feels right now.)

Thursday, 7 December 2017

Heads Up On Why January 1st Could Get Expensive For Families

Like most of us, I was pleased when the Ontario government announced that it will start covering prescription medication costs for children under 25 as of January 1 2018.  It would have been even cooler if autism treatment had been included, but this is still a great step.

Then I got a notice from my insurance company that they would no longer be covering Alex's medication after December 31st.

Okay, that seemed fair, although writing a letter to tell me that seemed a little cheap and mean.

Then I read the second paragraph, which explained that his medication would not be covered under the OHIP+ program either and that I should contact his doctor.

WTF?

Not cool, but at least I was given some warning about it.  I contacted our doctor and was told that "Oh yeah, it's definitely covered... well, maybe it will be... you should check with the pharmacist."

So I checked with the pharmacist and found out that the type of medication is covered but the format (liquid instead of pills) is not.  Good news, there's a form that we can complete for an exception (the EAP - Exceptional Access Program).  Bad news: these forms regularly take 8-10 weeks to process and with the surge of applications expected for OHIP+, it could be more like 4-6 months.

Which means there is going to be a gap between lapsed insurance coverage and OHIP+ coverage, a gap that could get very expensive since the medication is about $200 for a 3 week supply.  The next refill would be about two weeks into January, so I'm going to see if I can get it done early, but we've had issues before where insurance refused to cover the costs because we're refilling earlier than they expected.

I'm more than a little annoyed that I was given less than a month's warning to deal with this situation.  Even more annoyed that this seems like bureaucratic bullsh*t, since he a) has a prescription for that medication in that form and b) has been on the medication for awhile, so it's not like we're trying to game the system.

My advice to parents (both special needs and otherwise) is that if your child is on a prescription medication, check with your pharmacist to see if its covered under OHIP+ so that you don't get an unpleasant and expensive surprise in 2018.

Wednesday, 6 December 2017

Passed the Public Access Test

Dave, my dad and myself all passed the Public Access Test with Lynyrd, meaning that we are now officially service dog handlers for him, with all the rights and responsibilities thereof.

I'm never entirely comfortable with examinations.  Even if I've done something perfectly a dozen times over, I'm always worried that the one time it counts, I'll make a mistake.

Lynyrd did very well with the food refusal and distraction parts of the test, which were the two parts I was worried about.  (Both are an automatic fail of the entire test, with no second chance.)

The second bit of good news was that the person from NSD said that Alex and Lynyrd were bonding really well and working together as a team really well.  So we may not be too far behind where we would have been if Icon had stayed with us.

Now that the test is completed, it's time to work on getting the two of them ready to go to school.

Tuesday, 5 December 2017

Getting Ready For The Holidays

This weekend, I began the process of decorating our house for Christmas.  It's a fairly large job and one that gives me pause each year.  Is it really worth it to go to all this effort for a few weeks only to have to pack it all away again?  (Especially since I know I will do the bulk of the work by myself.)

Each year, I do it anyway so that my kids can have a special holiday.

How much do they notice?  It's hard to tell.  Kids take stuff for granted and mine are no exception.  I would only really find out how much it means if I didn't do it, and for now, that's not something I'm willing to try.

So for the next week, I'm going to be hanging lights, draping garlands, cursing timers, rescuing ornaments from the cat, and stringing snowflakes for the world to see.  And by world, I mean two special pairs of eyes.

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 info@quickstartautism.ca 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. 

Tuesday, 31 October 2017

Chew Toy Wishes and Stuffing Free Dreams

Before I left, we were having a problem with Lynyrd chewing Alex's stuffies.  I spoke to NSD about it and their advice was simple and to the point:

1) Make sure Alex's stuffies are out of reach in a bin (this is a transitional measure)

2) Provide Lynyrd with his own stuffies (separated in a box and by material)

3) If Lynyrd takes one of Alex's stuffies, take it away and give Lynyrd one of his own

Straightforward and doable.  So when I came home, we went to the pet store and picked up four plush chewable toys, the ones marked as the toughest to destroy.  They were more expensive but I thought it was worth it to have something that would last.

They lasted less than 6 hours before Lynyrd had seams ripped open and stuffing yanked out.  I tried sewing them up with high strength waxed thread.  No deterrent or delay.

So we tried some different chewable plush toys.  Same result.

I've now ordered a third batch.  

Now I don't mind if we have to replace toys fairly frequently.  After all, we had to do that with Alex's chew toys as well.  But I want more than a few hours before I have to take the toy away because it's too damaged.

I'm going to look into getting some canvas of my own and see if I can make something more resistant.  But meanwhile, we'll just have to start getting creative.

Monday, 30 October 2017

And I'm Back

Last week was a wonderful week of warm weather, beach walks, fun and writing.

Then I came back.  

Don't get me wrong.  I love my kids and my family, but having only been back in the country for a little over 48 hours, I'm already feeling like the life vest has been snatched away and the waves are beginning to swell.

There are a bunch of things which didn't get taken care of while I was away (like a recall on our dishwasher because it likes to catch on fire, an infestation of wasps in the basement, calling someone in to look at our broken air conditioner, making sure the pharmacist ordered Alex's medication, etc.) that are now on my plate.  And more that I'm sure I will discover.

I still have to deal with my inventory and gear from the conferences and get that put away.  And get the winter clothes out of storage in the basement (once the wasps are taken care of).  And deal with Alex's IEP and set up a meeting with the school.  Plus deal with the fact that a lot of stuff got put into convenient piles in the household.

I have to work on behaviour issues, like Alex's button pushing (which has gotten worse), Nathan's truth telling (ditto), and Lynyrd's desire to chew stuffed animals.  Then there's the vet appointments for both Neelix (cat) and Lynyrd (dog), and medication for Ceili.  And get back to making sure Lynyrd has his daily training session (which he hasn't).

This is just a small cross-section of the stuff I need to manage on top of my job, my writing, and my own health.  I took a week off and I will probably be paying for it for the next two months.  This isn't unusual and why I resist taking time off.

I needed the time away and I'm glad I did it.  It would just be a lot better if I didn't have to come back and immediately dive into waters that are far over my head.

Thursday, 19 October 2017

Taking Some Much Needed Time

I am going to be silent next week because I am taking some much needed time off.  Without the family.   I'm headed someplace warm, where I can sleep and write to my heart's content.

Hopefully, I'll come back well on the road to recovery.

See you all on the flip side.

Tuesday, 17 October 2017

Talking about The Good Doctor at Can-Con

Last weekend was Can-Con, the Canadian Conference for Speculative Fiction, and I overheard an interesting conversation about the new TV series, The Good DoctorThe series is by the same team that created House and the show looks at a young doctor with autism and savant syndrome becoming a surgical resident.

Personally, I had mixed feelings about this show to begin.  Autism is trendy right now, and this looked like one more jump on the bandwagon attempt.  But then I found out it was produced by David Shore, who has been respectful about autism issues in the past and has expressed interest in exploring the challenges that people with autism face.  So I decided to give it a try and while I'm still not one hundred percent sold, it's held my attention and respect enough to continue giving it a chance.

So I was surprised when I overheard a conversation talking about how offended some people were that the opening episode had the surgical head telling the doctor with autism that he didn't belong on the surgical team and how the board of directors was upset at the idea of hiring someone with autism.  The people I was listening to were offended that the characters were treating this doctor with prejudice.

And yet, that's actually one of the reasons that I respect the show.  Because that prejudice is there and people with autism experience it every day.  Even those who are much higher functioning than the character, whose autism is "invisible" in most situations will find themselves getting passed over for jobs, promotions and relationships because of an assumption that they would be unable to handle the social aspects of the job.  Even better, in the show, the main character's displays of superlative competence are not enough to overcome his social awkwardness in the eyes of his colleagues, certainly not by the end of the first few episodes.

Now, one of my frustrations is that the character who is expressing the most prejudice (the head of surgery) is not getting called on it.  He has been very offended when someone accuses him of being prejudiced and the people accusing him have backed off.  I am hoping that at some point, someone is going to tell him that deciding in advance that someone is unable to handle a job despite having met all of the listed qualifications is actually a definitive example of prejudice.  Because that's going to bring some real awareness if the writers and producers have the guts to go there.

Thus far, the actor playing the title character is doing a good job of balancing the social awkwardness without going into "jerk" shorthand.  I certainly find him a much better representation than Sheldon on The Big Bang Theory.   I also like that the show's description separates "autism" from "savant syndrome" as the two are very separate conditions.  Too often, they get lumped together.

There are still a lot of pitfalls for this show to avoid and only time will tell if they can be successful at that and at telling interesting stories.  But for now, I'm cautiously optimistic.

Friday, 13 October 2017

Family at the Autumn Evening for Autism

Last night, Dave and I were attending the Autumn Evening for Autism, one of Quickstart's big annual fundraisers.  From what we saw, it was a great success.

But during the speeches, something struck me.  Senator Bob Munson was talking about a mom who had to outrun her 14 year old child with autism and call the police to keep the child from hurting her.  He said "She shouldn't have had to call the police, she should have been able to call on all of us."  As a family.

I think I know what he meant, that the autism community needs to stick together and parents need to share information, etc.  But with all due respect to the Senator, that entirely misses the point.

Parents of children with autism shouldn't have to trade tips and secrets.  They shouldn't have to rely on other parents and family supports to deal with their children.  The government should be supporting families, providing care, treatment and support, just as they would for any other developmental condition or serious illness.  Families should be able to access the information and support they need through the healthcare system, from trained and specialized professionals.

In an ideal world, society at large would be able to forget autism.  Getting a diagnosis would be like getting a diagnosis of cancer.  Not good but it's taken care of.  The child would be assessed and treated without the parents having to research, plan and pay for it all.  If the government took care of the child, then society, specifically friends and family, could help to support the parents and siblings, and then everyone would be better off and less burned-out.

So while I appreciate the sentiment and intention behind Munson's words, as a parent, I demand that the government stop relying on families to sacrifice themselves to support their children with autism.  The fact that we love our children and will do anything to help them to succeed should not be used as an excuse to not help us.  Stop treating autism like welfare, only temporarily helping the worst of the crisis cases and penalizing those who are trying to help themselves.

I've heard a lot of speeches about how things are going to change and how politicians want to help us.  I've seen spectacular amounts of money pledged.  And very little has actually changed.  Piecemeal programs, underfunded programs, huge waiting lists and a support system that seems to be unaware of what supports are actually available.  Not to mention my personal pet peeve, the income caps on programs that continually tell my family that we are "too rich" to deserve help.

I am very grateful for all the support the autism community has given me and I am more than happy to pass it along to others.  But we should never forget that this level of support is necessary because the government is not doing its job to help our children.  This is a stop-gap measure of desperation, not the preferable solution.

Thursday, 12 October 2017

And Now I Know The Rest Of The Story

I spoke with Alex's teacher yesterday and he did have a difficult day on Tuesday but Wednesday went much better.  They feel that the "ignoring" method is working for the head-banging and Alex hasn't been targeting windows again, so that's a relief.

I'm glad that he's doing well but it was an anxious twenty-four hours while I was in limbo.  I've let them know that I prefer a call or a text to an email if they want to talk.  Hopefully the communication continues to improve.

Tonight is Quickstart's Autumn Evening for Autism and then tomorrow The Canadian Conference for Speculative Fiction (Can-Con) starts.  Which means I have a lot of work to do.

Wednesday, 11 October 2017

Something Happened

Yesterday, Alex came home with a blank communication book and a band-aid on his forehead.  Under the band-aid was a small scab on top of the bruised lump which has been present since the second week of September (from head-banging).

Yesterday evening, I found a note from his teacher in my email asking me to call before 3:30 to discuss his day.  I don't check that email account except in the mornings or evenings, so I didn't get the message until way after the deadline.

So clearly, something happened yesterday which has worried staff at the school.  What it is, I don't know, which ramps up the anxiety.  Did he hurt someone?  Did he frighten them?  Did he get away from staff and leave school property?  Are we in for another round of having to discuss the head-banging?  Has the behaviour plan been followed?  

Too many unknowns to create anything resembling a plan at this point.  And since planning is my comfort zone, that means I'm currently out of it.  I'm also feeling pretty discouraged.  He was doing so well 18 months ago.  And I really don't think this is something endemic or puberty-driven.

But, I can't dwell on it too much.  Hopefully his teacher will contact me and I can get to the bottom of this before the end of the day.

Tuesday, 10 October 2017

More Illness and Anxiety

There was a time when my body just worked.  Not always well and I certainly wasn't going to win any awards for healthiest lifestyle, but I could count on myself.  Now, ever since the surgery last spring, when I get sick, I get sick hard and it takes me longer to recover.  In fact, I don't think I've felt completely well for over a year now.  Which sucks.

I got hit hard by the fall cold (which is already a hard hitter).  Nathan was the first one to get it in our house and nearly two months later, he's still coughing.  Then it hit me and it is here to stay.

All of this has meant that I'm not keeping up with all of the things I have to do.  I had to take two days off work last week and I've spent a ridiculous amount of time sleeping or too exhausted to do more than watch TV.  (Which means I was too exhausted to read, and anyone who knows me knows that is a big deal.)

It's been especially difficult since I've been having to keep a close eye on what's going on in both schools.  Nathan's class has been moved to a portable, which has been a source of anxiety for him.  And Alex is still having trouble with aggression and head-banging.  I'm especially worried about the aggression, since that was another thing which had disappeared at home.  I'm really hoping it doesn't make its way back.

IEPs (Individual Education Programs) should be coming out soon.  Nathan was on a non-modified program, so his IEP is mostly about what help he's allowed to ask for.  Alex's will be different.  His is going to need a lot more detail and should look very different from what we had last year.  It's the next big step in making sure that this year goes better than last year.

Wednesday, 4 October 2017

Explaining The World to My Kids

The last few years have held a lot of horrible events like mass shootings, people driving cars into crowds, public calls to violence, and insults/attacks aimed at those protesting the political.

So the question for me has been: how much of this do I explain to my boys?  For Alex, I'm not sure how much he hears and understands, but he certainly repeats what he's heard, so I need to help him to understand that some slogans, no matter how catchy, are not appropriate.  For Nathan, I'm walking a delicate balance between informing him to give him a chance to ask questions and making him worry about events which are out of his control.

It's been a tough set of decisions.  At first, I thought I would just leave them out of it aside from a brief commentary: X happened, so you may hear people talking about it, but you don't need to worry because the police caught the bad guys.

Then I found Nathan playing an online video game which consisted of defending Trump tower from Hillaries (yes, characters who looked like Hillary Clinton) with big blaring warnings of a Liberal Attack Wave and Social Justice Warrior Attack.  That's when I knew I had my work cut out for me.

I didn't ban the game (because I don't want it to become a forbidden treat) but I talked about how Hillary Clinton was a real person and how it must hurt her feelings to see games like this where people are encouraged to attack her.  We talked about Donald Trump and I told him that I thought Trump was acting like a big bully, using his power and position to attack people who disagreed with him.  I explained that Social Justice Warrior was a mean expression, used to attack people who stood up for those who have been hurt by our system.

Since then, I've had to have conversations about whether or not it's okay to punch Nazis (for the record, my opinion is that I have no problem with using violence to defend myself or others, but I am cautious about how seductive it can be to give oneself permission to attack a group.  Violence is easy, immediate and emotionally satisfying but it does not bring about real change), the difference between crazy people and those who use weapons (cars or guns) to attack innocent people (the mentally ill need help and support and those who attack others are cowards looking to make themselves feel important), and why words are important (how the same event can seem entirely different depending on the words chosen to describe it).  

It's a lot and I'm not sure how much is going right over their heads.  After all, appropriate responses to the world are something that most adults spend a lot of time trying to figure out.  But mainly, I want them to learn that the people doing the talking are not always to be trusted, that they have their own agendas.  I want to teach them to be skeptical and insist on research (including source checking).  But I also want to emphasize that for every horrible person, there are a dozen who are trying to make the world better.  People who help the wounded, defend others, and stand up to offer both compassion and insight.

Tuesday, 3 October 2017

Back Home and Settling In

We've finished our first weekend with Lynyrd and thus far, things have gone pretty well.

We're getting some "Lynyrd back to Cambridge" from Alex, but he also seems happy to pet and play with his new dog.  We're keeping things very low key to start, letting it be a positive experience for both of them.

I have to admit that I'm feeling very overwhelmed and on my own about the whole thing.  I'm the one who has to do the daily training upkeep, work on giving Alex and Lynyrd positive opportunities together, and deal with food, grooming and vet appointments.  Not to mention fielding questions from the school and other issues.

I have an appointment with my doctor this week and I think I'm going to have to put my foot down about the medications.  There are at least two which are not helping at all and which seem to be draining my energy further.  It's not worth any more experimentation.

I really need my body and brain to start functioning the way they used to again.  Too much stuff gets missed when I'm exhausted and foggy all the time.  I get sick and it takes me forever to recover.  

I guess what I really need is a vacation where I don't come back to an overwhelming pile of work, but that's not going to happen any time soon.  As long as I'm the one handling the vast majority of what needs to happen here at home, I'm always going to be "irreplaceable" in the worst possible sense.

Thursday, 28 September 2017

Can't Believe It's Almost Over

Tomorrow I'll be heading back to Ottawa due to some professional commitments.  Dave and my dad will be staying to finish the last two days of training with Lynyrd.

Leaving early means that I miss the St. Jacob's market (which I loved last time) and the practice public access test (which makes me nervous).

St. Jacob's is disappointing but I'll live.  It's the practice test which I'm obsessing over.  Lynyrd is a great dog and he's responding well to me, but I rarely have confidence in my ability to perform under evaluation.  I know I can do something perfectly a dozen times and then mess it up once it's important.  But, as I keep reminding myself, NSD wants us to succeed and will work with us.

I've got my to-do list for when I get home.  Mainly daily practice of food refusal, ball ignoring, and the halt command with Lynyrd.  Almost everything else will get used in regular practice, but those three are unpredictable and important to get right even when spontaneous.  So I need to make sure Lynyrd's skills stay sharp.

My wish list of things to work on include: going to the mat automatically when the doorbell rings, practicing "hide and seek" and "find Alex", and a remote halt command (not sure if that one is possible, but I'm hopeful).  Possibly also a "cuddle" command, which would be like the "visit" or "over" command but more of a lean in than a deep pressure.  But any new tricks will have to wait until Lynyrd is settled.



Tuesday, 26 September 2017

Welcome to NSD Lynyrd

It's been a busy couple of days with National Service Dogs, but we have our new dog: Lynyrd:


He was named after the band, so we've been calling him Mr. Skynyrd when we want to be formal.  He's a very different dog than Icon, in terms of personality.  Lynyrd is more attentive and eager to work, but far more easily distractable than Icon was.  Luckily, he comes back to us almost immediately, without much correction.

Lynyrd is a "grin" dog, who always seems to have a smile.  Though you can't see it in this picture, he has a white blaze down his chest and a little fringe of white around his lower jaw.  I think that will help Alex a lot when it comes to distinguishing between Lynyrd and Icon.  The two dogs are about the same size (within 2 pounds of each other) but Lynyrd is not the biggest dog in the class.  We have two monster sized fellows, each between 95 and 100 pounds.

The training is different as well.  Different aspects are being emphasized and some changes.  Last time we were told, don't worry if your dog eats grass, it helps with their digestion.  This time, we've been encouraged to stop them grazing.  There are areas where we obviously got sloppy in our follow-through as well, because we're having to work hard to do it properly (mostly with repeating commands rather than doing the ask once, verbal correction, physical correction structure that we're supposed to use when the dog isn't listening).

It's been bittersweet.  Lynyrd is a great dog, but being around so many black Lab mixes inevitably reminds us of Icon and how much we miss him.  We've gotten an update that Icon is very happy and settled in with his puppy-raiser who is over the moon to have him with her.  We're happy for him, but sad for us.  It helps that Lynryd is such a different dog, and he's definitely creating his own space in our hearts.

Friday, 22 September 2017

Update on Window SIB

I'm much calmer than I was yesterday at this time.  I spoke with our behaviour consultant and she is fairly confident that we can manage Alex's attempts to headbang on a window without increasing headbanging in general (or targeting the window specificially).

We need some information from the school first, in order to formulate a plan.  Information like, how often has he targeted a window, is there a trigger/environment which prompts a window instead of another possible surface, is it a single headbang or is it part of a tantrum?

Once we have that, then we can figure out a plan for redirecting Alex to prevent him from targeting a window, without making him feel as if he's being thwarted in his intentions.

Thursday, 21 September 2017

Getting Worried Again

After last week's meeting, I was feeling better about Alex's school for this year.  Yesterday, I got a note which has ramped up the anxiety again.

During the meeting, they mentioned that Alex had once tried to headbang against a window the previous year.  The school was concerned about breakage and possibly severe injury and wanted the window to be an exception to the "don't intervene and ignore the behaviour" protocol.

I was nervous about that but thought "It was only once and he never targets windows at home or when we're out.  It shouldn't be an issue."

Well, it's an issue.

He did it again at school yesterday and so I got a note about how this behaviour will be addressed when the team gets together to develop his safety plan.

Now, I understand the school's concerns.  Windows are not like walls and Alex can and does hit his head hard enough to damage drywall.  But at the same time, once Alex realizes that he gets attention for targeting a window, he's going to start doing it more and more so that he gets the reaction.

I've brought in our behaviour consultant to see if there's a way to discourage choosing the windows without encouraging the behaviour.  I can't think of one but hopefully she can.


Wednesday, 20 September 2017

My Boy Is Growing Up

This week was the deadline for deciding on Hallowe'en costumes for the boys so that I'll have time to sew them.  Nathan wants to be a Starfleet officer.  And Alex does not want a costume.

It was a surprise for me.  He wants to stay and hand out candy and not wear a costume.

It's a little disappointing.  I love Hallowe'en and cosplay, but I'm also pleased that he's communicating what he wants rather than just going along with me.

I guess that despite his enduring love of the Wiggles and Teletubbies, my boy is, in fact, growing up.

Tuesday, 19 September 2017

Trying To Decide What To Do Next

With toilet training on solid tracks right now, it's time for Dave and I to decide what else we want to work on with Alex.  For the last decade, toileting has been the primary focus and anything that might disrupt or detract from that has been put on the shelf.  Also, the sheer amount of mental effort meant we didn't have much extra.  (That's always one of my big pieces of advice for parents: don't take on too many programs at once because you'll get exhausted and then they'll all slip.)

So what do we want to work on?  

Alex is fairly good at getting himself dressed and is doing well with eating regular food.  We could work on table manners and independent personal hygiene (ie washing himself, brushing his own teeth and hair).  Both of those will affect how people interact with him long term.

He likes being with people, so maybe we should work on appropriate social interactions (ie, only saying hello once and not demanding endless streams of French-English translations).

Or maybe we should work on getting him involved in some kind of organized sport (swimming or track and field would be my top picks).  He's an active boy and will likely need that kind of activity throughout his life to stay on an even keel.

Here's the thing.  We likely will only be able to tackle one of these.  So which one is the priority?  There's no right or wrong answer.  It's a matter of deciding where to put our effort.

Luckily, we have some time to think about it since I won't be starting anything before the new dog arrives in October.

Monday, 18 September 2017

National Service Dogs Fall Grad Class Revealled

National Service Dogs posted pictures of the fall graduating class on their Facebook page.  One of those dogs will be coming home with us in September, so we're pretty excited about it.  We know there are 6 families participating in the fall training and since there are 8 dogs in the class, I'm guessing that 2 of them are PTSD dogs.

We've decided not to show Alex the pictures in advance.  We don't want him to get fixated on one of the dogs and then have a problem if that isn't the one assigned to us.

With 6 black Labs and 2 chocolate ones, it looks like the odds are in our favour to get another black lab, like Icon.  I'm not sure how I feel about that.  On the one hand, they're all adorable, but on the other, is it going to be hard to see the dog as themselves instead of as not-Icon?  I guess we'll find out.

And now it's time for my not-so-subtle, shameless promotion side: if you'd like to donate to National Service Dogs you can do so here.  They don't get any government funding and rely entirely on donations to cover the $ 30 000 cost of raising and training each dog.  The families don't have to pay (although we are encouraged to fundraise, which is why I'm sharing this with you).  These are some really hard-working people who care a lot about the families that they help and the dogs that they raise.  So please spread the word so they can get the support that they deserve.

Friday, 15 September 2017

Results of School Meeting

On Wednesday, we had our meeting with Alex's teacher, EAs, the learning support teacher and the vice principal.  It ended up going very well.

They had read the behaviour consultant's report and had some good questions.  For example: what to do when Alex uses aggression to get out of a task?  At that point, there are two conflicting behaviour goals (put Alex in a time out for the aggression and make him complete the task).  I explained that we used a diminishing reward system in those cases.  We would do the time out, then go back to the task, but now the reward for completing it is a less preferred one.

I was also able to go through our behaviour recording system and show them how easy it is to make notes.  Having this kind of data collection will make it much easier to track any issues and I should be able to catch problems well before they escalate.

There was some uncertainty about the baseline levels for head-banging.  I explained that at home, the vast majority of the time we have no head-banging and even on a very bad day, we don't go above 3 incidents.  They pointed out that school is different with more demands, which I can agree with, but I still believe that if they follow the protocol, they will see similar results.  He'll find other ways to protest, but the head-banging should be reduced.

The other thing which made me nervous was their insistence that if any staff feel that the head-banging is unsafe, the staff will have the full support of the school to intervene.  On the one hand, I can recognize why that condition needs to be in there since the "common sense" rules don't apply to bureaucracy and I don't want anyone to get in trouble for doing the right thing and stopping Alex from hurting himself.  On the other, I know that we had an issue last year with a staff member deciding that any head-banging was harm and thus they were going to intervene in all of it (which is what lead to the problems).  But in the end, the data collection will let me keep track of that and deal with the issue down the road.  So I will wait and see how it all plays out.