Monday, 10 July 2017

First Few Days of Our Calgary Adventure

Now that I finally have my internet connection working, I can post about our Great Western Adventure.

We managed to stuff all of our gear, both kids and Icon into our car to get to the airport.  The shuttle driver was very courteous and helpful.  (And Alex was thrilled to get to ride a new type of bus.)  I have to say that the staff at the check-in counter was somewhat less helpful.  There were a lot of people checking in and while we got pulled out of line so that we could be helped directly, there were several points where it looked as if we'd been forgotten.  We ended up leaving our "please sit here and someone will be down to escort you through security" spot and just going through security on our own. 

Security was very good with Icon.  They made us have him go through the metal detector on his own but didn't ask us to strip off all of his gear.  Alex got selected for a random screening but he participated reasonably well.  We got to our gate about five minutes before boarding and introduced ourselves to the gate attendant.

We had the bulkhead seats on the plane.  Dave and Alex were on one side, with Icon under their feet.  Nathan and I were on the other side.  It was nice having the extra leg room, but because we didn't have a seat in front of us to store our bags, we had to put them in the overhead bin, which was a little inconvenient.

The flight went smoothly and we arrived on time, meeting my father at the airport (he was in Calgary already and leaving the next day).  The kids were getting tired and a little cranky but we managed to have a nice meal and get ourselves set up at the hotel.

For our first day, the only item on the agenda was the Stampede Parade.  We left in what we thought was very good time, but ran into some complications.  First, the train into the city was far more packed that we'd anticipated, sending Nathan into an anxiety meltdown.  He was howling that he wanted to go home.  Dave and I were straddling Icon, trying to keep anyone from stepping on him, so I was trying to hug Nathan and get him to calm down.

We had purchased bleacher seats in advance, which proved to be a very good idea.  We found our seats and, with a little shuffling, sat down just as the parade reached our area.  Alex quite enjoyed the whole thing, singing and dancing to the music and waving to the participants.  Icon sat quietly by the curb and seemed interested.  A few times, we got nervous because there were golf carts whizzing by to deliver water to the people in the parade.  Nathan was still upset when we sat down, but then he got interested, then he got bored and started to get upset again.  I think he had the hardest time.  We were lucky that our seats were in the shade, but had a challenge in that Alex drank all three litres of water that I'd brought and did it within the first half hour.

After the parade, we got some snacks and more water from a convenience store and sat down in a park to allow the crowds heading back on the train to disperse.  Nathan perked up after some water and chocolate and was much more cheerful.  It took awhile, but eventually we got ourselves a train and headed back to where we'd parked the car.  We spent the rest of the day having a quiet time and then headed out to dinner.

After dinner, I took Icon to visit my grandmother.  She has a lot of trouble remembering things now and thought I was her niece.  Our conversation was a little repetitive but she was delighted to see Icon (she's always loved dogs) and was happy to see me.

On Saturday, we went to Heritage Park, a historical village set in the 1890s to 1910s.  Alex was not in a mood to be cooperative.  He bolted several times and complained constantly about everything, including any random comments he overheard.  Nathan was also in a cranky mood.  Dave generously offered to supervise them playing in the park while I went to do some exploring and learning.  I got to visit the Indian settlement and learned about some of the native games and tools, as well as visit the Hudson's Bay Trading Post and see how the trading system worked.  After I got back, we rode a few rides on the historical midway and then headed back to the hotel for a quiet break.  Unfortunately, Alex continued with his complaining and Nathan's mood wasn't stable,

Saturday evening, we went to my cousin's house to celebrate the 1st birthday of his new son.  It was a good opportunity to see most of the Calgary relatives, but the boys were clearly having a difficult time.  We left early and headed back to the hotel.

Sunday we went to Banff amid lots of complaining.  At this point, I was feeling very discouraged and wondering if I had made a mistake about the whole trip.  Dave made a comment that he didn't feel Icon was helping at all and had made things more difficult (since we had to deal with his gear and food, etc.)  Personally, I think having Icon was helpful in that we could keep Alex tethered to him and he was keeping Dave calmer than usual, but it was still discouraging.

Nathan was interested in doing the trail ride along the Bow River, so we signed up and got ourselves some horses (Max for Nathan and Bowden for me).  Alex, Dave and Icon went to amuse themselves.  When we got back from the trail ride, Alex was done and Nathan was exhausted, so we headed back to Calgary. 

We have another few days here.  I want to spend a day at the Stampede and another at the Calgary Zoo.  I'm hoping that the boys end up enjoying at least some of it but it's been a pretty intense grind.  I'm still not completely recovered from my surgery and medical leave and I'm finding that I get tired very quickly and don't have the energy that I usually do. 

I'm glad that we came but I have to be honest and say it's also been a lot harder than I was anticipating.  Some of it is Alex's behaviour is more fragile and not in as good a place as last year, mostly due to the issues at school.  Some of it is my own lack of resources.  Dave has been making a real effort to be more supportive than on previous trips, which I appreciate.  Icon has been picking up on the anxiety and temper, making him more anxious.  And Nathan has surprised me with how much trouble he's having.  I guess this may be a sign that he's more like Dave in preferring to be at home.

Wednesday, 5 July 2017

People, Not Puzzles

A few days ago, I came across a series of articles talking about how a number of people in the autism community no longer like the puzzle pieces as a symbol for autism.  This honestly surprised me, as I wasn't aware of any negative connotations to the symbol.

To me, the collection of brightly coloured irregular shapes represents many things.  First, it reminds me of the difference in how I see the world and my son sees the world.  When I do a puzzle, I'm assembling an overall picture.  When he does a puzzle, he is assembling a series of connecting shapes.  I would have a lot of trouble with a puzzle like the ribbon above, but he would see it as perfectly normal.  So it makes me remember that how he sees the world is different, but no less valid, than how I do.

Second, it symbolizes the many things that need to come together in order to help people with autism.  Different people and therapies, times to push and times to accept, sensory enhancements and challenges, attitudes, explanations and tools.  No one group, practice or therapy has all the answers and everyone's puzzle will look different, but it is possible to put it all together.  Autism is a team challenge and requires not just a village, but an entire city of cooperation.  (I realize this touches on the "cure" issue, that offends some people as it implies people with autism need to be fixed, but disregarding the challenges that many people with autism have is offensive to me, more on that later.)

Third, I like the bright colours because it stands out, much as people with autism do.  But just as the jumble of colours might be initially offputting or confusing, as people become used to it, they can see the beauty and interesting parts.  Those who first see my children might be worried or not sure how to react, but give them some time together, and they'll see the wonderful people underneath the surprise.

Now, some of the objections are valid.  People complain that the puzzle (especially with the primary colours) is juvenile, either infantilizing adults with autism or ignoring them completely.  Others dislike the symbology of a puzzle with a missing piece, implying there is something missing or needing to be fixed.  Others feel that since autism is a spectrum, then the symbol should represent that (usually using a rainbow).

Then there are the objections that I have a problem with.  A lot of the objections center around Autism Speaks, which uses a puzzle piece as its symbol.  I dislike how Autism Speaks presents autism and their confrontational, melodramatic approach, but I also don't feel that one organization gets to co-opt the entire movement.  If we have a problem with Autism Speaks, then we need to deal with them, rather than trying to come up with a new symbol (which they would inevitably pick up anyway).

And finally, there is the anti-cure crowd, which is mostly made up of high-functioning people with autism who resent the implication that their way of seeing the world is any less valid than neurotypicals.  There's a valid issue there, but what bothers me is when they claim to speak for all people with autism.  Someone who was able to learn to communicate and who can function independently in society has a very different view than those who need intensive help to learn even the basic skills of interaction and function.  For that person to then judge the second (or the second's family) for using therapy and claiming that the therapy isn't necessary, that's offensive.  To me, this is rather like someone on crutches claiming to speak for all people on the handicap spectrum and saying that ramps aren't necessary because he or she doesn't need to personally use a wheelchair.

In the end, I feel that puzzle is still a good symbol for people with autism and the challenge.  Because, the most important aspect is that no piece is the same as any other, but that doesn't mean we can't all work together.

Tuesday, 4 July 2017

Our Canada Day

Despite being in the Nation's Capital, we stuck to our local Canada Day celebrations rather than braving the downtown Ottawa ones.  

Heavy rain in the morning kept us indoors for the first part of the day, but after lunch, it cleared up, so we joined my sisters and went to the Canada Day fair in Kanata.  We brought Icon and had him tethered to Alex, which actually worked fairly well.  We had to untether them so that Alex could go on rides, but that was pretty simple.

Nathan asked to go on the Gravitron, which surprised me because he'd gotten scared halfway through last year.  But I agreed and Alex wanted to go as well, so my sister joined us.  As the ride started to spin up, I could see Alex being very casual, with his feet propped up on the board as it slid up to the top.  Nathan, however, began to cry and get upset.  I held his hand and was shouting over the music that it was okay, that I was having fun.  I couldn't turn my head because I got too nauseous.  But after that first blip, he started to enjoy himself.

After we'd been there about an hour, Alex had a tantrum when I told him that we had to wait in line for the next ride.  He pushed Nathan, so I put him in a time out.  (Luckily we were near the edge and there was a chair beside one of the carny trailers.)  I sat him down and he proceeded to have a good twenty minutes of continued tantruming.  He kicked Icon, so I untethered them and moved Icon out of reach.  Then he bolted, giving me a good chase across half the fairground and through the mud.  I got him back and stayed close to him, but then he kept slapping at me or trying to stand up or twisting around to stick his feet on the trailer's steps.  Eventually we got our one minute of quiet cooperation and sitting still.  It was really hard for my father to not react to Alex, but he made a good effort.

After the tantrum, my sister took Nathan on more rides and Dad and I took Alex for a walk.  We ended up at McDonald's and Alex got an ice cream (since he'd done a BM in the toilet earlier in the day).  Then we went back to my parents' for supper and to chill until the fireworks.

We got ourselves set up on a little, out of the way hill, all decked out in our glow bracelets and necklaces (including Icon, who had a very fetching glow collar).  We watched the end of the Finger Eleven concert, with Alex singing along enthusiastically to the songs he recognized.  We had our snacks (cotton candy for Alex, popcorn for Nathan and mini donuts for the rest of us).  The fireworks were late but spectacular and worth the wait.  Then we took our tired boys home for the evening.

All in all, a good day.  Happy 150 Canada.  Hope I'm around for 200.

Thursday, 29 June 2017

Report Cards

We got the boys' report cards yesterday and there were some surprises.

First, the pleasant surprise: Nathan has made some real progress in his ability to work with groups and tolerate when other people deviate from the rules as he understands them.

Second, the not-so-pleasant, not-so-surprise, Alex has gone from getting a lot of "Satisfactory" and "Good" to almost all "Needs Improvement".  (There are only 4 grades for those who haven't had the pleasure of a modern report card: Excellent, Good, Satisfactory and Needs Improvement.)

It directly counters the school's breezy assertion of a "good year" where Alex made "lots of progress" during our IPRC meeting.  And backs up my concerns that things are not where they should be.

It's frustrating but underscores the necessity of pushing back.  If we continued to be patient and understanding, they would have continued to alternate between "everything is great" and "crisis mode" and Alex would have been the one caught in the middle.

This year is done and I need to put it in my rearview mirror, while making sure that I set things up so that it doesn't happen again next year or in any other year.

Wednesday, 28 June 2017

One Day Left

After today, there's only one day left of school.  Then 9 weeks until it all starts up again.

Everyone talks about how summers seemed to last so much longer when they were a child and it seems to vanish completely as an adult.

Someday in the near future, I'd like to have a childhood summer.  No work, only a few plans.  Mostly just taking each day as it comes and enjoying it.

I don't know if it will ever happen.  But it's nice to dream about.

Tuesday, 27 June 2017

Setting Things Up For Next Year

Yesterday we had a meeting with Alex's school to set up as much as possible for next year.  Unfortunately, we don't know who his teacher will be, which leaves a big gap in the plans.  But we still managed to get some ideas.

The Learning Support Teacher (head of the program) will send me an email with the name and photo of the new teacher as soon as she knows who it will be.  That will definitely help Alex with his expectation.  In August, we will come and do a tour of the school to remind Alex that everything is physically the same as it was last year.  We will also set up a meeting with the teacher to discuss Alex and his strengths and needs and do it as early in the year as possible.  (Preferably before Alex starts school but that's one of the unknowns.)

I'm also going to be going after OSTA (the transportation group) again over the summer.  Alex has had five different drivers this year (not including one day subs) and we haven't received notice about any of them.  Just a different driver one day.  

At home, we will work on bolting and compliance, and as much as possible, aggression and head-banging.  The latter two are difficult because we don't see them often at home.

I am also going to ask the school to collect data on bolting, aggression, head-banging and compliance next year.  That will give a much more solid understanding of what is working and what isn't.

This year was very difficult.  There were a lot of things which happened which were out of anyone's control but which also weren't given much of a transition setup.  Add in the inconsistent expectations and reactions and it's not surprising that Alex had a rough time.  But the important thing is that it did not go on long enough to overthrow all the work we've done.  With hard work and a little luck, we should be able to get Alex back on track fairly swiftly.

Friday, 23 June 2017

We May Have Finally Done It

We began toilet training Alex when he was two and a half.  Now, over a decade later, it's possible that we may have finally achieved that goal.

For the last month, Alex has been independently going to the washroom when he needed to go.  We've still had some accidents but on a small scale, not the full on go-in-your-pants level that we used to.  And each accident has been followed by a proper production in the toilet.

This is a huge deal and I give the credit to our behaviour consultant (and to ourselves).  None of us were sure this was even possible but we all agreed to keep trying, even though the statistical odds were against us.  We began with having him sit on the toilet for 3 seconds and through small incremental steps and frequent rewards, managed to get him comfortable with sitting on the toilet for several minutes, got scheduled toileting breaks into the routine, encouraged "dry pants" and now, we seem to have achieved independent toileting.

It's not a guarantee yet.  We'll have to see if the behaviour holds through the summer and into the next school year.  If it does, then we can declare victory.  But for now, something which seemed impossible is now very probable and I'm proud of what we've achieved.

Thursday, 22 June 2017

Tip-Toeing Through Tantrums

This morning, Nathan and I sat down to go through a test that he brought home.  Standard procedure is: go through the test, correct any answers he got wrong (or didn't show sufficient proof for) and then I sign it and it goes back to school.

To my surprise, he got very upset when I asked him about one question.  There were several fractions and he was asked to circle all of the ones which were equivalent to 1/3.  The teacher had written a note "Are you sure you found all the answers?" so I guessed that Nathan must have missed one.  We started going through the possibilities and the crisis hit with this one: 2 1/6.  

I guessed it must be 2 x 1/6, which would be equal to 1/3.  But Nathan insisted, through tears, that it was 2 and 1/6, which would not.  I suggested that we write a note asking the teacher to clarify.

Nathan immediately got very upset, saying that he would get in trouble and it would be all my fault and the police would come and take me away as a bad mother.

(This any-roadbump-leads-to-global-catastrophe approach really worries me, but that's a topic for another post.)

I talked him through it, bringing him back to my version of reality.  I pointed out that if his teacher punished him for asking a question, that was very serious and I needed to talk to the principal and the teacher.  He said his teacher had never punished him for asking a question and told them they should ask questions to make sure they understood.  We took some time to brainstorm different ways to ask the question and settled on writing it on a sticky note.

It's these kind of episodes that remind me that Nathan needs extra support too, not just Alex.  He's going through a difficult transition period (with the end of school and a social shift as his classmates start moving into exclusive groups).  I'm sure there will be many more explosions in our future, but hopefully the repetition of talking them through will help Nathan to eventually do the same on his own.

Wednesday, 21 June 2017

Differences In Comprehension and Perception

Alex is a smart boy, there's no question about that.  But what Dave and I have been wondering lately is: how much does he understand of what's going on around him?

Recently, Alex had eaten most of his breakfast, except for the honeydew slices, which he has been resisting of late.  The rule is, once he has eaten all of his breakfast, then he can have screentime.

With a half-dozen small slices still on his plate, Alex asked if he could have the computer.

Me: Did you eat all your breakfast?

Alex: Yes.

Now, clearly, that wasn't accurate.  I could still see the honeydew on his plate, which I prompted him to eat before he got screentime.

The question is: was he lying, attempting to trick me into giving him screentime when he had not fulfilled the requirements?  Or... was he attempting to complete the ritual, giving the answer which would usually lead to screentime?

If it was a lie, that is a sign of advanced comprehension.  It would mean that Alex can understand what is asked, recognize that I am a separate person from him who may or may not have the required information, and that it is possible to deceive me by giving incorrect information.

If it was a ritual, that is a sign that his comprehension is much less than we'd hoped.  It means he does not understand the question, recognizing it only as a meaningless sequence of sounds and interaction.  His "yes" in that case is scripted and entirely detached from any reference to reality.

It's honestly hard to tell.  We know that Alex uses scripts extensively as its hard for him to compose verbally on the spot.  We know that he generally prefers to give "easy" answers rather than pushing himself to comprehend (when asking questions about what has happened in a movie or book, for example).  

I want to believe it was an attempt at a lie, but I suspect it was not.  We've been cautioned before that Alex could be appearing to understand more than he actually does.  This is something we'll have to keep an eye on.

Tuesday, 20 June 2017

My Thoughts On Ontario's New Autism Program

On June 8th, Ontario announced its new autism program.  This program is supposed to integrate existing programs and services under one program to make it easier for families and avoid gaps in service.  This is a laudable goal but after more than a decade of hearing how the broken system is about to be fixed, I am skeptical.  Often these announcements have led to bureaucratic hoops with little or no improvement in the actual services.

The program has several new features:

- A single point of access.  There will be one entry point to the OAP in each of the nine service areas to make it easier for families to access services for their child.

This is a great feature and one that's been long overdue.  Rather than having to apply at a dozen different agencies (with the risk of paperwork being lost or confused), now there is one point of application.  When discussions were originally being aired, there was also talk of having a single point of contact.  I'm disappointed to see that the single point of contact is not included in the new OAP, but a single point of access is still a great improvement.

- Family-centred decision making.  As key partners in their child's care, families will be actively engaged in the assessment, goal-setting and intervention planning process for their child.

Again, this sounds good.  Often the parents are left out of the loop when it comes to the publicly funded services.  And parents should be treated as active partners, as they are the ones who know their children best.  What worries me about how this is phrased is that I'm concerned that the burden of decision and research will be put on the parents with the system raising its hands and saying "You figure it out."

- Collaborative approach to service.  A foundation of the new OAP will be the collaborative approach taken by community support service providers, clinicians and educators to support children's needs at home, during service and in school.

This statement is legalese which boils down to promising very little since it is both vague and talking about intention rather than action.  The intent seems to be that everyone will have to work together, which would be awesome.  However, if "collaborative approach" means that everyone will have to agree, then I foresee issues.  My recent experiences with Alex's school shows how the system can be used to drag the process out to avoid having to make changes.  

- Service based on need.  Services will be flexible and individualized.  The intensity and duration of the services a child or youth receives is based on their needs and strengths, regardless of age.  Each child's service plan will be determined by clinical assessment.

This one is very encouraging to me since it has a clear plan of action.  Prior to this, services were determined by whether or not the child qualified for the single program offered by the government.  If a child was too high or low functioning, or too old or young, they didn't qualify.  However, I would like to know what services will be offered and if the government is expecting the private sector to fill in the gaps.  Right now, the private sector is drowning in families who were given money and told to find services.  Without preparation to make sure that appropriate services are available, this could end up being an issue.

- A direct funding option.  A new direct funding option will be implemented by the end of this year.  This will provide all families with a choice between receiving direct service or receiving funding to purchase their child's service.

This implies that the government will be relying the private sector to fill in the gaps.  And doesn't address the issue of whether or not the entire cost of private programs will be covered.  Under today's program, direct funding covers about a third to half of the cost of a private ABA program, which still leaves parents with a hefty bill.  Hopefully this will be explained to parents when they are making their choice.

- Safe, effective autism services.  The province intends to regulate ABA practitioners to help ensure families receive safe, high-quality services, have confidence in their providers and know where to go if they have a concern.

Again, this statement has good intent but is vague on action.  This is absolutely necessary as we are already seeing people with minimal or no credentials setting themselves up as ABA providers to take advantage of the government money flooding the private sector.  But depending on how the regulation is handled it could be a joke, a straight-jacket or, as intended, a way to weed out those seeking to take advantage.  

I believe the government has good intentions and truly wants to help families with autism.  But too often, those good intentions have not been followed up with the planning and preparation needed to make sure that things were improved.  Sometimes it has felt like the government was more interested in the press conference and the press release than in the actual implementation, rushing ahead with something that sounded good but with no idea how to make it work: eg: millions of dollars in promised funding that vanished into organizational bureaucracy without reaching the families or providing families direct funding without making sure there were services available.

Hopefully the OAP will be different.  Hopefully having everything under one program will make it harder for agencies to wash their hands of a child and leave them in limbo or have too many agencies trying to dictate the course of action.  Hopefully it will bring greater accountability to the agencies in question, forcing them to show effectiveness.

We won't know for several years.  If this is done right, it could be of huge benefit to families, taking a massive burden off them.  If it isn't, it will be more money and time wasted.  We'll just have to see.

Friday, 16 June 2017

Getting Summer Set Up

There's only two weeks left of school and so it's time to review all the summer plans and make sure everything will flow together smoothly.  We've got our family trip to Calgary, the boys' usual two weeks with my parents at their cottage, various summer camps and Nathan's riding lessons to coordinate.

I'm a little disappointed that we won't be able to take advantage of the school board's camp option for special needs kids this year.  They require the child to be in attendance for the month of July and since Alex will be joining us in Calgary, it wasn't an option.  That means paying for two weeks of private camp instead, which is not a cheap option.

Nathan will be doing several City of Ottawa camps, which he usually enjoys.  We're not doing a computer camp this year, since he still has trouble controlling his temper around screens.  And he's looking forward to riding again.

We've decided to do one week each for the boys at the cottage this year.  I think some separation will be good.  Unfortunately, the cottage break doesn't line up with my work's shutdown this year, so I've had to make sure that whichever boy is home is occupied while I'm trying to work.

It's not a bad schedule and I should only need extra help during the last two weeks of August, when Alex's camps are done.

Thursday, 15 June 2017

Crazy Dog

The last two mornings, I've let Icon out to do his business outside in the backyard and when I go out to remove the evidence, he's going nuts.  Dave calls it Turbo-Charged-Doggie.  Icon dashes around as if being chased by the Hound of Baskerville, picking up random bits of grass and dropping them in other areas of the yard, and barking loudly at me.

His tail is up, so I'm pretty sure he thinks he's playing a game.  But he's not responding to my commands for "Enough" to stop barking or "Stay" to hold still.  He'll respond to a "Come" but immediately dash off again if I try to grab his collar.

I'm going to have to either bring him in before I pick up after him or take him out on a leash so that he can't get away from me and I can cut short his morning crazies when he starts barking.  (I don't mind the dashing around and playing, especially if he's off leash, but the barking is a no-no.  And so is the not listening to my commands.)

All part of the dog-owner learning curve, I guess.

Wednesday, 14 June 2017

Should I Force My Son to See Wonder Woman?

Last night, Dave and I went to see Wonder Woman (which is awesome!).  For the past several weeks, Nathan has been eager to see it but yesterday, when I talked to him about it, he had changed his mind.

I suggested that we could go see the movie this weekend and was surprised when he immediately got upset.  He said that he didn't want to see it and if I tried to make him, the police would arrest me for child abuse.


Since then, I've been trying to figure out where this vehement reaction came from.  Is it because his dad and I were discussing sexism in the movie industry and comparing the public reaction to Ghostbusters to that of Wonder Woman?  (For the record, my husband assumes that there is no sexism in the movie industry and that Ghostbusters was just a bad movie.  I maintain that the new Ghostbusters wasn't horrible, it just wasn't aimed at fans of the original.  And yes, there is sexism in the movie industry.)

Was the refusal just the result of a boy who's tired?  He's had a lot going on in the last few days, a full day field trip, a big school project, an outdoor Cub event.

Was it worry about trying something new?  This is one of the areas where Nathan's autism shows itself.  New events and experiences, no matter how exciting or anticipated, are worrying to him.  I've tried to remind him of how often he ends up enjoying himself while still trying to respect his feelings.

Or is this a more subtle effect of social pressure, that boys don't see "girl" superhero movies?  This is the only option where I really should push Nathan into going to see Wonder Woman.  Because that's not a stereotype that I want to reinforce.  I want it shattered and buried.

For now, I'm going to leave it.  I'll ask again this weekend and if he's still resistant, I'll let it be.  It's not like Wonder Woman won't be coming home once it's available for home viewing.

Tuesday, 13 June 2017

Here's What's Been Going On

It's been a very difficult two months.

I was finally beginning to get my health issues under control when we got hit with two major crises:

1) Icon, our service dog, was diagnosed with diabetes.  This would have been difficult enough to cope with but was compounded by the fact that the pet insurance company lost our application.  Thus not only was the $ 1500 testing to figure this out not covered, but the daily medication (at $45 per week) would also not be covered, along with any health complications that arose from the diabetes or could be argued to have arisen from the diabetes.  

The diagnosis means that he is no longer qualified to serve as a service dog.  He will be returning to National Service Dogs this summer to find a new adoptive family as a companion dog and we will be receiving a new dog in the fall.

I'm absolutely heartbroken over this.  Alex is still in the bonding process but I bonded with Icon completely.  If there was any way to keep him, I would, but it wouldn't be fair to Alex or Icon.

2) Alex's issues at school hit a crisis.  I was asked to bring him home because of a massive tantrum (which dissipated as soon as he was told I was coming to get him).  Then we got a few hints that maybe it would be best to just keep him home for the remainder of the school year so that his behaviour issues wouldn't affect the rest of the class.

I don't want to paint a bad picture here.  The teacher in the class strikes me as very well-intentioned and someone who genuinely wants Alex and her other students to succeed.  But there have been some pretty substantial gaps in the application of basic behaviour theory, such as rewarding tantrum behaviour by allowing Alex to avoid demands to avoid tantrums.

On the advice of our behaviour consultant and Alex's head therapist, we have hired an education advocate, a lawyer who specializes in helping special needs children and their families deal with the education system.  She has gotten them to drop the request to keep Alex home and is working on making sure that his IEP and other documentation is up to date and accurate.

Unfortunately, it does look as if a lot of information was lost during the hasty transfer from J.H. Putman to his new school.  And more was lost when his regular teacher had to go on a surprise medical leave.  Hopefully we can get this all sorted out but I'm anticipating a long and drawn out fight.

So, that's what's been going on and why I haven't been posting.  I hit my limit and was honestly struggling just to get through the day.  I'm slowly getting myself back together now and I'll try to go back to a daily post.

Thanks everyone for your well-wishes and patience.

Wednesday, 31 May 2017

Why I've Been Quiet

First off, I want to apologize to everyone for disappearing without notice.  It's been a very intense few weeks and I honestly became so overwhelmed that everything fell off the to-do list.

I can't go into details right now.  There are a lot of pieces in the air with three major crises happening.  Anything I post about them could end up being a problem, so I'm going to have to wait until things are more resolved before giving an update.

I don't often get this overwhelmed.  Usually, no matter how bad the crisis, I can keep a level head and keep moving.  I may feel angry, upset or frustrated but I still function.  With this set of circumstances, I couldn't do that.  It took everything I had just to get out of bed each day and do the very basic things like make sure the kids got to school.  I've had a lot of crying jags, sleepless nights and gut-wrenching stress.

I'm slowly pulling myself back together but there are a lot of unknowns right now.  And I don't deal well with long-term uncertainty.  But I need to get back to work, get back to running the family and get back to my writing career.  I'm hoping the worst is over now but I suspect there are still a few curveballs waiting to strike. 

Thanks to everyone who sent a note wanting to know if I was okay.  Your kind thoughts are appreciated and mean a lot.

Tuesday, 23 May 2017


I had a lovely evening last night with two of my best girlfriends.  We've known each other for over 25 years at this point and look forward to knowing each other at least another 25.

We've all had our challenges: physical, emotional and mental, but we've always known that we can count on each other.  As I said last night: we are like scar tissue: no matter how ugly, we are permanent and strong and unerasable.

There are some friends in life that it doesn't matter how long the gap is since you last saw one another, the connection is always there.  I'm very grateful to have that.

Thursday, 18 May 2017

More Challenges At School

Alex is still having behaviour problems at school and is now raising the stakes with aggression, as well as self-injury and tantruming.  The teacher has shared that some students are not coming to school due to his behaviour and another is refusing to enter the classroom.  From the hinting, I am getting the impression that they are working up to insisting that Alex stay home.  Or rather, wanting me to volunteer to do it as they are not permitted to refuse Alex access to school.

Dave and I have talked about it as an option.  Allowing the school to continue to push Alex into deteriorating behaviour isn't a win for anyone.  The longer this goes on, the harder it will be to come back from.

But there are other factors to consider.  First and foremost, if we agree, we are setting dangerous precedents both for Alex and the school.  For Alex, he will learn that he can escape an unpreferred situation simply by behaving badly for a persistent period.  For the school, rather than work out any future problems, they will be more inclined to ask us to pull him out again.

Other factor, we can't have Alex simply sitting around doing nothing (or more likely, finding ways to get into trouble).  We would have to set up a homeschooling situation, which means that one of us would need to stop working.  I already know that I have no talents in that area (I only tend to frustrate Alex and myself rather than actually make any progress) and I somehow doubt that losing Dave's salary would be an option.

This has really been a horrible year for him and I'm alternating between being furious and being ready to cry.  At the start of the year, he was doing well enough that there was talk of integrating him with regular classes in the near future.  And now, less than 10 months later, his behaviour is bad enough that they're hinting he needs to leave the autism class.

What's even more frustrating is that we're not seeing similar behaviour issues at home.  There's an upswing in verbal protest and the head-banging has reappeared after almost two years of extinction, but we're not getting the kind of thing they are describing at school.  Which means something is happening at school to either trigger or encourage his behaviour.  I'm not seeing it in the descriptions of what happens, but it's there.  And until we can find it, things are going to continue to get worse.

Tuesday, 16 May 2017

Improvement in Increments

Yesterday I saw the doctor and my blood pressure is slowly going down.  I'm still tired with low energy reserves but at least I'm moving out of the danger zone.

I have another week and a half of medical leave and another appointment to check on my progress before I go back to work, but it's a good sign.

I'll have to make some changes to ensure that I don't spike right back up again.  But I'm glad to hear that my stress levels haven't inflicted permanent damage yet.

Friday, 12 May 2017

Alex Sent Home From School

Yesterday, I got a call at 9:30 asking me to come and pick up Alex.  Apparently he was having a massive tantrum and they had to evacuate the classroom for everyone's safety.

Alex has been having problems at school over the last two weeks and there have been a few suggestions that we leave him home for a day to give him a chance to recover.  I've resisted, primarily because getting to stay/go home is a reinforcer for bad behaviour but secondarily, I doubted it would work.  If a day off would help, then Monday and Tuesday would be better days and that hasn't happened.

However, I didn't think I could argue with them in the moment, so I went and got Alex.  He apparently calmed down immediately when told he was going home, which is a bad sign.  

I brought him home and did my best to make it a non-fun day.  I made him do reading comprehension and writing lessons, made him complete a non-preferred 500 piece puzzle and had him participate in Icon's daily lesson/training session.  I also took his favourite toys and put them away until after the school day was done.

I contacted his behaviour therapist and his old teacher for suggestions.  We've tried the standard techniques that should have worked but thus far it's not helping.  I'm not sure what's triggering this.  There have been a lot of personnel changes at the school and apparently one of the other children is also having difficulty.  Neither of those seems like it would be enough to trigger this level of outburst, but Alex's old teacher said it might be enough if Alex hasn't bonded to any of the new people yet.

This is the one "go home free" pass that the school gets.  After this, I will be fighting it as an option.  The teacher has assured me that they've met and regrouped and shouldn't be asking me to do this again.

We'll see what happens.

Wednesday, 10 May 2017

Service Dog Attachment

One of the key points to making sure that a service dog is helpful is making sure that it attaches to the child with autism.  Part of the criteria for an autism service dog is that it is very eager to make social and emotional connections.  That might seem backwards, until you realize that the dog has to be super-eager because the child's efforts will probably be minimal.

But it does mean that there is a risk for the dog bonding to someone other than its intended child, which is why NSD warned us to keep our distance, particularly during the first few months.

It's been a challenge, particularly for Nathan.  Initially, we'd planned to get Nathan a cat of his own to focus on, but Dave had some last-minute reservations and that plan got put on hold.  Since then, I've been having to spend a significant portion of each day telling Nathan to leave Icon alone.  It's also been a challenge for me, since I'm the one home with Icon all day and the one who deals with the daily training updates and the majority of the outings.

But the efforts are starting to pay off.  Icon is beginning to follow Alex around instead of me, which is a good sign.

We've been having Alex feed Icon, give him treats, play with him during the walk and groom him.  It's a lot to manage but I've been trying to focus on keeping it fun for both of them.

Tuesday, 9 May 2017

Back to Exhaustion

Last weekend, I was wearing my author hat for a trade-show (Ad Astra, a conference for speculative fiction writers).  It was a productive and fun weekend, but very exhausting.  And now I'm finding myself having a hard time recovering, which tells me that a week and a half of relaxation was not enough to build up my resources.

I have an appointment with my doctor next week and we'll see how things are going.  Meanwhile, back to the napping system which was working before.

We've been hit by a couple of minor crises.  After a couple of years of cranky functionality, our dryer has decided that running for more than ten minutes at a time is unnecessary.  Then there are a few government sponsored paperwork-hoops for our taxes and my EI application.

And to top it off, Alex has been having an especially difficult time at school lately.  Something is happening between him leaving the house and arriving at school, transforming him from bubbly and cheerful into angry, frustrated and unable to cope.  So Dave will be driving him into school for the rest of this week to see if we can get it sorted out.

This brings back memories of the fall, when the afternoon driver was putting Alex into a seatbelt restraint without telling us.  I don't think this driver would do something similar.  He likes Alex and has always been pleasant with us.  And this could be something entirely out of the driver's control (eg something sensory which happens along the route).  If that is the case, hopefully Dave will pick it up and be able to come up with suggestions.

Friday, 5 May 2017

A New Set of Social Rules

We're discovering a new set of social rules when we're out in public with Icon.  I'm honestly surprised by how many people want to interact with him.  Granted, he's a well-behaved and good-looking dog, but I wouldn't have thought that would be such an attraction to the general public.

Sometimes, Icon is working and I'm with Alex, so we can't stop to interact with people or go through the protocol to let people greet Icon.

Sometimes I'm on my own with Icon and then I make an effort to be a good ambassador for National Service Dogs.

And sometimes things get awkward.

Lots of people do "drive by" pettings where they pet Icon as they walk past, even when he's in vest.  It's incredibly frustrating as it distracts Icon but there's not much I can do.  I've noticed that we get fewer when Alex is tethered to Icon and holding the handle, but that may be because they don't want to get close to Alex's flailing limbs.

People who ask to pet and then don't stop are the other challenge.  If we're sitting and waiting somewhere, then sometimes people with ask to pet Icon and then sit there and continue to pet him until one of us is called away.  I'll have to come up with a strategy for that but thus far, it's caught me by surprise.

Icon's doing pretty well with the distractions, but I still worry about it and it's not the ideal circumstance.  He's also getting a lot better about greeting people at home.

All part of the learning curve, I suppose.  

Thursday, 4 May 2017

Autism Ontario Summer Camp Funding Open

The Summer Camp respite fund for Autism Ontario is open and parents can apply until June 2nd.

It's not a huge amount of money (usually a max of $ 500 per child), but it can help.  It's a random draw, so there's no guarantee or triage process.

One note though: even if you're rejected, save your receipts from any activities your child does over the summer (including therapy and respite as well as camp).  Sometimes the money doesn't all get claimed and they'll do a second draw in October.

Tuesday, 2 May 2017

Nathan's Birthday Party

We had Nathan's birthday party at Funhaven on Saturday and I'm pleased to report that the staff did an amazing job to keep things moving.  We ended up with 10 kids, including Nathan, which worked out perfectly since that was the max for everyone to go at once on the bumper cars.

The kids all seemed to have a good time.  I was pleasantly surprised to find out that they've cleared out some of their arcade games for other attractions.  It makes it much less noisy than it was, and more tolerable for me.

We did the bumper cars three times, the jungle gym for half an hour and two games of laser tag.  (For which, I maintain, the children cheated since they're short enough to hide easier than the adults could.)  :)

Then the kids got taken upstairs for cake and pizza.  Funhaven accommodated our allergies and food restrictions, getting a hot dog for the one child who was lactose intolerant and making sure the kids who couldn't eat bacon got cheese pizza.

We had a staff host assigned to us and she did a good job at keeping everyone corralled.  She followed us the entire time and was always available and cheerful.  She even helped with handing out presents to Nathan, so that I could concentrate on taking pictures.  

We did have one slight wrinkle, in that one of the parents misunderstood the pick up time and wasn't planning to come for another few hours.  But it got sorted out and the child came back to our house until the parent could come.

A good start to birthday season.

Monday, 1 May 2017

When People Say "It's Okay"

All parents have been there.  You're attempting to do a parenting moment with your child, maybe on the importance of saying "Thank you" even when they're not excited about a gift, or being aware of other people when careening around in public, or apologizing for an accidental bump or other issue.  During the process, the other person tries to put a halt to everything by saying "It's okay."

I understand why people do it.  It's social protocol, to show they're not upset.  Or because they don't want to be the bad guy and spoil the moment.  Or sometimes even because they don't feel it's the child's actions are that big a deal.

But here's the thing.  It's not actually okay.  Parents have to take advantage of the low-key opportunities to prevent the bigger outbursts later.  It's not possible to teach during a tantrum.

By pushing the "It's okay" (and believe me, it's interesting how many people will want to argue with parents about that), the person is actually undermining the parent, distracting the child and prolonging the entire event.  I'm not sure how it works with neurotypical children, but with mine, if I can't follow up within that crucial 3-5 second window, my opportunity is lost.

I've had other people tell me that I'm being mean and too strict when I've insisted on following through.  But I stick to it, because their social approval isn't worth risking my kids' future on.  They need consistently applied standards, or else it gets too confusing.  And I don't owe the public an explanation or justification in the moment. 

Friday, 28 April 2017

On Medical Leave

I went to see my doctor as I'm still having trouble from the surgery last month and I've now been placed on medical leave.

On the one hand, I feel an undeserved sense of shame, like my body has let me down or as if there was something I could have done to avoid this.

On the other, I'm so exhausted that I know this is the right thing to do.  I need the time to recover and gather some semblance of energy again.

Tuesday, 25 April 2017

We Passed

It's official.  We passed our Public Access Test and are now officially licensed handlers for Icon.  

This is actually a bit of an unusual circumstance in the service dog community.  Service dogs are usually directly handled by the people they're helping.  But for children (and some adults) with autism, the dog must be handled by the parents which creates a big of a legal grey area.

It is not permissible to prevent someone from bringing their service dog with them into a public place.  It is the same as telling someone they can't bring their wheelchair.  However, technically, the dog isn't our service dog.  It's Alex's.  So they can't prevent Alex but they could, in theory, try to prevent us.  Which is how the Westjet incident happened.

It will happen to us at some point, just as we always have to be aware of Alex's behaviour and its impact on the rest of the world.  But the vast majority of people we've encountered so far have been respectful, pleasant and understanding.  As I'd hoped, Icon is serving as a visual heads-up to the public that Alex is a special boy and needs some extra tolerance.

Friday, 21 April 2017

Blue Roses

This is a little more overtly religious than I'm generally comfortable with, but I thought the sentiment was very sweet and a good way to round off the week:

Here is a little something to think about.
Having four visiting family members, my wife was very busy, so I offered to go to the store for her to get some needed items, which included light bulbs, paper towels, trash bags, detergent and Clorox. So off I went.  

I scurried around the store, gathered up my goodies and headed for the checkout counter, only to be blocked in the narrow aisle by a young man who appeared to be about sixteen-years-old. I wasn't in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, "Mommy, I'm over here."  

It was obvious now, he was mentally challenged and also startled as he turned and saw me standing so close to him, waiting to squeeze by. His eyes widened and surprise exploded on his face as I said, "Hey Buddy, what's your name?"  

"My name is Denny and I'm shopping with my mother," he responded proudly.

"Wow," I said, "that's a cool name; I wish my name was Denny, but my name is Steve."

"Steve, like Stevarino?" he asked.  

"Yes," I answered. "How old are you Denny?"

"How old am I now, Mommy?" he asked his mother as she slowly came over from the next aisle.

"You're fifteen-years-old Denny; now be a good boy and let the man pass by."

I acknowledged her and continued to talk to Denny for several more minutes about summer, bicycles and school. I watched his brown eyes dance with excitement, because he was the center of someone's attention. He then abruptly turned and headed toward the toy section.

Denny's mom had a puzzled look on her face and thanked me for taking the time to talk with her son. She told me that most people wouldn't even look at him, much less talk to him. I told her that it was my pleasure and then I said something I have no idea where it came from, other than by the prompting of the Holy Spirit. I told her that there are plenty of red, yellow, and pink roses in God's Garden; however, “Blue Roses” are very rare and should be appreciated for their beauty and distinctiveness. You see, Denny is a Blue Rose and if someone doesn't stop and smell that rose with their heart and touch that rose with their kindness, then they've missed a blessing from God.

She was silent for a second, then with a tear in her eye she asked, "Who are you?"

Without thinking I said, "Oh, I'm probably just a dandelion, but I sure love living in God's garden."

She reached out, squeezed my hand and said, "God bless you!" and then I had tears in my eyes.

May I suggest, the next time you see a blue rose, don't turn your head and walk off. Take the time to smile and say Hello. Why? Because, by the grace of God, this mother or father could be you. This could be your child, grandchild, niece or nephew. What a difference a moment can mean to that person or their family.

From an old dandelion... Live simply; Love generously; Care deeply; Speak kindly; and, Leave the rest to God.

"People will forget what you said, people will forget what you did, but people will never forget how you made them feel."

Wednesday, 19 April 2017

Time for Testing

The representative from National Service Dogs is coming today to see how Icon is settling in and do our official Public Access Test.  (I'm not sure if the test will be today or Thursday or Friday as she'll be here for three days.)

Icon has been doing fairly well with the practice tests we've been doing but not so good on the spontaneous stuff.  This morning, Nathan had left a piece of cereal on the floor and Icon ate it.  I tried to take it out of his mouth, but no luck.

He does well with passing other dogs as long as we've moved him out of the way to a sit position (though I still haven't figured out what to do when people bring their dogs right to him).  He can pass the food drop, provided we have our complete attention on him.

It's going to be a busy three days.  But we'll make it all work, one way or the other.

Tuesday, 18 April 2017

Calling An Abort

On Sunday, I had to call an abort on Alex's Easter celebrations.  He'd been in a difficult and boundary-ignoring mood all day, probably due to a poor night's sleep.  Lots of verbal protests and screaming at us.  After we'd been at my parents' house for less than an hour, he bolted away three times while we took Icon out to a park.  After the second, he'd been warned that if he did it again, we would go home.  Less than five minutes later, he did it again.

I drove Dave, Icon and Alex home and then came back to finish dinner with Nathan and my parents.

It's been awhile since I had to take Alex home early from my parents.  Usually, even if he's having trouble, he pulls it together so he can stay.  This time, he was so blatantly escalating that I'm wondering if he wanted to go home and figured this was the best way to do it.  Dave said that he was considerably calmer and better behaved once they got back to the house.

If that's true, it's a little troubling because he effectively threw a tantrum and got what he wanted.  So we'll have to keep an eye out to see if there are more tantrums.  Which will be hard because his behaviour has been more difficult throughout this year.

It's exhausting dealing with the tantrums, though I was pleased that I didn't have to justify my decision to take him home to my parents.  I was braced for the usual analyze and protests that it's such a shame that he has to miss a special event, but it didn't happen.  It's nice to all be on the same side.

Thursday, 13 April 2017

First week at home

Technically, it hasn't been a full first week as yet, since we came home on Saturday, but it's close enough for blogging purposes.

We've seen an upswing in verbal protests from Alex, all centered around the dog.  I haven't been getting protests about other touchy issues (like brushing hair or teeth).  It's all "No Icon."  But at the same time, Alex seems to really enjoy playing with Icon and petting him, so Dave and I are still betting on "No Icon" being a change protest rather than something specifically about the dog.

Alex has been walking the dog with me in the afternoon, finishing with a good play and romp in the park.  He likes holding the leash, so I usually give him the end while I hold the middle of it.  That lets me control Icon and actually sort of tethers Alex to us, so it's working well.  (We'll see if NSD agrees when they come out to see us next week.)

The school is seeing an increase in bolting.  It's probably a result of the changes and Alex having fewer bolting opportunities at home.

Dave and I have been taking turns sleeping in Alex's room so that we're on hand if anything goes wrong.  So far, no issues, but despite the crappy sleep we're getting on an air mattress on the floor as opposed to our comfy bed, we'll keep going until we're sure that we're past the honeymoon period.

It's an adjustment working everything into our routine.  Walks, doggie bathroom breaks, training time, it's all got to be stuffed into an already full schedule.  But (at the risk of jinxing myself), it's going well.

We have an appointment to introduce Icon to the vet next week and I've gotten him officially registered with the City of Ottawa as a service dog.  We still need to look into pet insurance and other issues, but it's all coming together.

Tuesday, 11 April 2017

Icon Comes Home

It's been an interesting few days since Icon came home late on Saturday night.

The initial meeting with Ceili went very well.  She was in the kitchen when Icon came in and sniffed around.  She ran away and he just looked at her, gave the dog equivalent of a shrug, and kept going.  A little later, he found her again and gave her a good sniff (from a respectful 12 to 18 inches away).  She had a puffy tail and splayed legs, but no hissing or swiping.  She has hissed at him once, when he surprised her on the stairs, but he didn't seem too bothered by it.

The initial meeting with Alex also went better than expected.  We had asked him to say hi to Icon and were prepared to have that be the extent of their encounter for the first day (which was Sunday).  Instead, he immediately wanted to sit next to Icon and pet him.  We got a measuring cup so that Alex could give Icon treats without having to touch them and Alex used it without protest.

He was very intrigued by Icon's leash.  The trainers had suggested keeping the leash on during the day to help with control, but Alex kept picking it up and giving Icon commands.  In the interest of maintaining the training, we've hung up the leash early, but it is making things more difficult as Icon adjusts to a new home.  We're having to give more corrections than we were needing to do in Cambridge.

It also surprised me that Icon follows me around the house all day, unless told to stay.  Even if I just run upstairs for a minute, by the time I get what I needed and turn around: there Icon is.  

Nathan is having a hard time not playing and interacting with Icon.  We've given him the job of Icon Police, to let us know if Icon gets up when we've told him to sit or down, or if Icon starts snuffling after something on the floor.  It gives Nathan a chance to be near the dog in a way that shouldn't affect the bond between Icon and Alex.