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.

Wednesday, 13 September 2017

Trendy, Trendy Autism

Autism is definitely getting more pop culture references these days, which I can appreciate.  But it still bothers me that so many of those references fall into one of two categories: the jerk and the superpowers.

There's a new show "The Good Doctor" about a doctor with autism who is super brilliant.  Dave and I have been on the fence about whether or not to watch it.  On the one hand, we feel that we should and we generally like medical procedurals.  But on the other, it can be hard for us if they portray autism incorrectly and even harder if they get it right.  

We will probably give it a try and see how it goes.  Shows like this make me wonder if ten years from now, autism will be an accepted part of the landscape.  Or will it be last year's trend, replaced by whatever new condition is considered hot?

Tuesday, 12 September 2017

Start of the School Year

Those who follow the blog know that Alex had a difficult year with a lot of behaviour issues at school last year.  So far this year, he's had two days with significant number of headbangs (more than 3, which I would consider the expected limit for a very bad day).  Two out of five is not a reassuring total.

Hopefully this is something of an extinction burst, where he's trying to see if he can get the teacher and EAs to back off the number of demands that they make of him.  After all, it was a very successful strategy last year (from his perspective).

But if it is an extinction burst, that makes it even more critical that everything is consistent.  Otherwise, we're only teaching him to escalate his behaviour to get what he wants.

I have a meeting tomorrow to discuss it with them.  I don't like confrontation, but at the same time, I did the "wait and see/understanding" route last year and the problems only continued.  This year, I have to be more active.

Monday, 11 September 2017

Alex: the DQ Employee

Over the last six months, Alex has been asking to be a "DQ Employee."  He was counting down the days until he turned 16 and would be eligible for a part time job.

This weekend, Alex and my father were at Carlingwood, at the manager at the DQ recognized him, greeting Alex by name.  Then he asked the magic words: Alex, would you like to make your own sundae?

There was a very enthusiastic affirmative from Alex (once he understood).

Under the direction of an employee, Alex used the soft ice cream machine to make his sundae, finishing it off with a little curl.

So a big shout out and thank you to the DQ at Carlingwood mall for making Alex's year.

We'll see if he still wants to be a DQ employee or if that wish has been ticked off his list for now.  But either way, that meant a lot to us.

Thursday, 7 September 2017

Saying Goodbye to Icon

Yesterday was very hard for all of us.  After supper, Dave took Icon to Kingston to meet with the NSD representative.  Icon got hugs and treats from all of us.

We've been told he's going to stay with his puppy raiser, who had him for his first 18 months.  We've spoken with her in the past and she seems like a lovely person.  We know Icon will be happy with her and that she'll love him the same way we do.  But it's still hard.

I hope we'll have a chance to see him again.  Our thoughts are with him.

Wednesday, 6 September 2017

First Day of School

The first day of school went reasonably well for Alex and Nathan yesterday.  Per Alex's teacher, there were some bolting incidents, but no headbangs, so that's reassuring.  Nathan has the same teacher as last year, so that should go relatively smoothly.

I got some writing done.  Which made me feel happy.  

I think it's going to be a long while before I can completely relax in terms of school.  It was such a rough year last time and there was a real gap in communication.  But it's a new team and I've been proactive in getting things set up, so realistically, I've done all that I can.

Which does not sit well with my inner control freak.  That little demon wants hands on surveillance and a guarantee.  But she'll have to live without it.

Today is Icon's last day with us.  Over the last week, Alex has begun asking for "Icon to stay" instead of "No new dog" which breaks our hearts even more.  Hopefully he'll bond with the new dog as well.  Tonight is going to involve tears and chocolate.

Tuesday, 5 September 2017


It's been a difficult summer for us, with lots of things going on.  Here's a recap of the highs and the lows:

Biggest high: Alex made it through the summer with only one small accident.  He is still independently toileting.  I think we can finally call it: he's toilet trained.  It's been 12 long years of trying everything we could think of, but the real praise goes to our behaviour consultant, who has spent the last 3 years coaxing him toward this goal.  Now that toileting is done, we'll actually have the mental space to work on other goals.

2nd biggest high: our newest four footed furry member: Neelix.  I'd been searching for a kitten for quite awhile, so that Nathan could have someone to focus his attention on instead of the service dog.  Enter Neelix, a domestic short hair with tabby stripes and a huge, playful personality.  She's adjusted well to our household, including the dog and our older cat, Ceili.  Ceili still doesn't like her but is willing to live and let live.  The dog would love to play, but Neelix is a little shy about it, considering the dog is almost 100 times larger than her.

Biggest low: The loss of Icon.  He's okay (for those who were reaching for the tissues) but he has developed diabetes and can no longer be a service dog.  We've spent a lot of time trying to figure out if he could stay with us but reality is harsh: I can't manage a special needs animal and I have my doubts about dealing with two large, active dogs.  (Alex will be getting a replacement service dog at the end of September.)

2nd biggest low: continued health problems for me.  I've had a summer of adjusting medications, incredibly low energy and painful cramping.  There's no real end in sight right now and I'm having trouble coping with the depression, which is why I've been silent.

Other highs: 

I've spent the summer working with our education consultant to get Alex's IEP in order.  It had gotten messy with all of the changes last year and some information got lost.  Alex has a new teacher this year, so hopefully he'll do better than last year.

Nathan has the same teacher as last year, which should hopefully mean another good school year for him.

I got an invitation to an exclusive writers' retreat for October, which I am very much looking forward to, since I am behind on my deadline for the latest book.

The trip to Calgary went reasonably well, but was considerably more draining than I'd expected.  The kids had trouble while we were there, but have been asking to go back so maybe a second trip will be more successful.

I'm hoping that I can post more regularly now but I'll ask for patience.  Thank you to everyone who reached out to me to pass on good wishes and concerns.

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.