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.