Thursday 30 June 2016

Government to Step Up After Funding Cuts

Two days ago, the Ontario government came as close as politically possible to admitting that they made a mistake.  A few months ago, they changed the way the publicly-funded ABA program worked for children with autism.  They cut off any child over 5 from receiving services, though they did provide a few thousand dollars so that parents could seek out private therapy.

Given that most private therapy programs run at over a thousand dollars a week and that there were a number of families who had been waiting years for their turn at services, this was not a popular decision.

But they seem to have figured out that they were condemning a huge number of families.  The plan announced on Tuesday calls for an additional $200 million over the next four years (to begin in June next year) which will include $ 1000 per week to families with children over 5 who are on the waitlist, so they can seek out private services.  They are also planning to increase supports in schools and to families and increase the availability of early diagnosis.

As always, my cynical little brain says: hold off the celebration until we see what happens.  Promises cost nothing in politics, it's actions and follow-through which matter.

This does mean that there will be a significant increase in demand for private ABA services, one which I'm not sure the private sector is prepared to deal with.  It takes a significant amount of time to train new therapists before they can work with children, which means that if we don't have an increased number of qualified graduates, then there will probably be a fair number of jobs sitting empty.

But there's at least a year to figure this out.  And it's a step in the right direction.  The government finally seems to be grasping the true level of challenge and costs that families with autism face.  And that's worth some cautious celebration.

Wednesday 29 June 2016

Alex's Graduation (With Photos)

Yesterday was Alex's graduation ceremony from Grade 6.  It's one of those mixed-emotion experiences for us.  On the one hand, so very proud of what he's done and how far he's come.  On the other, now we're headed into new and unfamiliar territory.  

The teachers at South March have been wonderful.  They genuinely care about Alex and the other kids in the class.  I couldn't have asked for a better group or for one who worked harder.  They are going to be an incredibly tough act to follow.

Alex did very well at the ceremony, which was over an hour and included almost a hundred Grade 6s graduating.  Only a few bits of commentary (including one moment during the principal's speech where she said it was time to say goodbye, so Alex naturally announced "Bye-Bye" to the room).  He seemed genuinely pleased to see me and Dave at the ceremony.

All of the kids in the program did fantastically.  They look so big and grown-up compared to when we first started.  They've all made great strides and I wish them best of luck going forward.

Monday 27 June 2016

Concussions and Head-Banging

First off, let me clarify that I am not an expert.  But as we were dealing with Alex's head-banging when he was younger, we began to hear about a condition called CTE (Chronic Traumatic Encephalopathy appearing in former NFL players.  They would become violent and delusional.  It was linked to being hit in the head.

Since Alex was self-inflicting multiple head-hits per day and doing it hard enough that it echoed through the house, we were naturally concerned.  We saw a neurologist who explained that we were right to be concerned but that CTE could only be diagnosed at autopsy and could only be suspected through a change in behaviour.  Alex couldn't show a change in behaviour which would not be attributed to the fact that he was changing from a toddler to a preschooler and we certainly were not about to do an autopsy.  She did reassure us that the preliminary evidence suggested that it took repeated trauma done over decades to create the conditions for CTE, so if we could work on Alex's head-banging, that would be helpful.  If we could even reduce it to one bang per incident, that would be helpful, as the theory was that CTE happened when the brain received another trauma before the first one had a chance to heal.  We asked if a helmet would help and the doctor told us that it wouldn't.  The problem is when the brain inside slams against the skull and, short of surgery, there's no way to install cushioning in there.

We worked on it and I accepted that we'd never know if CTE was a factor until it was too late.

This weekend, I watched the movie Concussion which is a docu-drama about the discovery of CTE by Dr. Bennet Omalu, the coroner who insisted on doing an autopsy on Mike Webster, a former football star who ended up homeless, self-mutilating and delusional.  The movie suggests that this was not the first former football player to go on a downward spiral and end up committing suicide, but it was the first time that someone insisted that there must be something physically wrong for it to happen.  (Good film, very powerful)

It brought back my original concerns and how helpless I felt as my child would injure himself over and over.  These days the head-banging is better.  We usually only have one bang and those fairly widely-spaced, maybe 1 a week.  

If he has injured himself sufficiently to cause brain damage, then I can only hope that we're prepared to deal with it.  Maybe it will be less frightening to him, as the autism already means he lives in a world which doesn't make intuitive sense to him.  Maybe he will be easier as he's used to being under constant care and likely will be for the rest of his life, regardless.

But we won't know.  Not for a very long time.  

Friday 24 June 2016

Terror in the Night

Nathan is definitely having a hard time as the end of school approaches.  We've had a couple of nightmares over colony collapse (thanks to Honey Nut Cheerios' Save the Bees campaign) and about prescription pill abuse (thanks to Drug-Free America ads).

He's been irritable and clingy, which has been a challenge since Alex is also showing the usual end of term anxiety.  The number of conflicts has risen quite abruptly in our house and the amount of earned screen-time has fallen.

I've been trying to give him time to express his concerns and prompting him to come up with solutions.  Planting flowers and buying bee-friendly produce to help save the bees and pointing out that we don't keep expired prescription drugs.

I know these are just smoke-screens.  The underlying anxiety is just taking on whatever form seems convenient and if we remove one, then it simply morphs into something new.  

I've been reluctant to set up appointments with a specialist but I'm starting to wonder if my pride is getting in the way of Nathan's health.  

I've also been thinking about where this could have come from.  My family are worriers (comes with the control freak territory) but this still seems excessive.  I've wondered if Nathan's anxiety comes from how Alex used to hit and push him so regularly when Nathan was very small.  (It was multiple times per day, even though we tried to never leave them unsupervised.  Alex used to run into another room to knock Nathan down, faster than we could keep up with him.)

I've wondered if those kinds of unprovoked and unpredictable attacks have simply taught Nathan at a deep, fundamental level that the world is not a safe place and that he needs to be constantly on guard.  If that's the case, I don't know that anything will ever be able to relieve the anxiety.  The best we can learn to do is to cope with it and teach Nathan how to keep it from affecting his life too badly.

Thursday 23 June 2016

Para Transpo Expanding Service

OC Transpo is going to be expanding their Para Transpo service to be eligible for those with mental illnesses and conditions, not just those with physical problems.  Personally, I'm kind of surprised that wasn't already an option but I'm pleased to see it.

On a practical level, I wonder how effective this will be.  I know a number of people who have used the Para Transpo service (which allows door to door drop off) and most of them haven't been pleased with it.  One fellow I knew was quite frustrated as he would try to use Para Transpo to get to his regular doctor's appointments and the service would not guarantee that he would be at the appointment on time.  Sometimes they would pick him up 3 hours early and other times they would be two or three hours late, causing him to miss the appointment and incur no-show fees.

Part of the challenge is the "minibus" model, which is only cost-effective if you have multiple riders.  Which means that the "door to door" service will likely include some extra stops.  I'm also wondering whether or not the drivers are prepared to have someone with severe autism, or schizophrenia, or bipolar disorder on the minibus.  People with mental challenges are much more likely to be disruptive than those with physical limitations.

I am pleased to see that the taxi chit program for Para Transpo is being continued.  It allows eligible riders to take a taxi instead of the minibus and OC Transpo picks up 40% of the fare.  It still makes for an expensive ride, but at least it provides an alternative.

It's a good effort to be inclusive and hopefully OC Transpo is considering the logistical challenges.

Wednesday 22 June 2016

Update on Fundraising for Alex's Service Dog

I took a look at Alex's page for fund-raising yesterday and so far we have raised over $ 19 000 for National Service Dogs.

I'm pretty proud of us for doing that and grateful to everyone who has contributed.  Thanks to my cousin Dominique and Jacobson's, to my mom and dad, to my mother-in-law, to Gridway Computing, Emerging Minds, and of course, all our friends for your fundraising efforts.

With luck, sometime in the next 6 weeks, we'll hear that Dave and I will be going to National Service Dogs for the parent training.  And from there, hopefully Alex's life will improve.

Thanks everyone.

Tuesday 21 June 2016

The Search for Sunglasses

For the last year, Alex has loved his red heart sunglasses.  Unfortunately, last week they broke and we've been going nuts looking for replacements.
Last night, I broke down and decided to look online.  I could not find the red plastic hearts but I found rainbow plastic hearts and rose coloured hearts. 

I'm hoping one of them will be close enough.  The store promised delivery in 3 to 10 days.  I'm hoping for 3, since it's bright out there.  

There aren't many things which Alex really likes in terms of his personal appearance.  He couldn't care less what shirt he wears or what his shoes look like.  But these sunglasses obviously meant something to him.  He picked them out himself and wouldn't wear any of the other sunglasses we have.  When something means that much to him, I want to make sure he can still have it.

Monday 20 June 2016

Planning With and Without Dog

Hopefully, sometime in the next two months, we'll be told that Dave and I will be attending Parent Training this fall at National Service Dogs.

But it's not a guarantee.

This has put us in an interesting quandary for planning for next year.  We need to make sure that everything we do takes the dog into account, but can't guarantee whether or not the dog will actually be there.  All this without really knowing the kind of impact the dog will have on our day to day life.  (We can guess, but, like having kids, it's never quite the same as you think it will be.)

We'd like to take the boys to the Calgary Stampede next year.  So we've been starting the preliminary budgets to figure out if the family can afford it and making choices like, do we try to stay with family or go to a hotel?  (We're leaning toward a hotel right now since Alex can be hard on a home.)  Do we rent a car and fly or do we drive?  

If we're flying, does the dog count as a medical companion and need a seat?  Or would he or she be put in a carrier?  Which hotels accept service animals (they all should, but some will be more accepting than others)?  

It puts some extra flux into our plans and as I've said before, I don't do well with uncertainty.  Luckily, there's plenty of time for this particular dilemma.  

Friday 17 June 2016

Two Weeks to Go

Two weeks to go until school finishes and summer begins.  We have all our summer programs confirmed.  Alex will be in camp for July and half of August.  Nathan will be doing a camp every other week and riding once a week in the evening.  My parents will be renting a cottage again for the boys.  It should be a good summer for them.

We're in a much different place than we were last year.  Alex is making some real progress towards toilet training but has had a behaviour regression for bolting and impulsiveness, which will make outings difficult.  Nathan is more independent than he was last year but also more anxious.  Sometimes it can be hit or miss to get him to do things, even if they're familiar.

I'm really worried about the week I'll be away in San Diego.  Nathan has a camp, but it's with older children (9-12) and given that he can already act younger than he is, I'm concerned about how he might react.  I'm also concerned because Dave tends to let him stay home rather than working with Nathan to solve the problem.  

I'm telling myself that if Nathan doesn't end up doing the camp, then that's not the end of the world.  There will be other opportunities.  But I'm still feeling the parental pre-guilt of wondering: if I was there, would it be more likely that Nathan would do well?

Wednesday 15 June 2016

Sad Day

Today is the funeral for the mother of one of the psychologists at my work.  She had been ill for a long time but I imagine that doesn't make it much easier.

This is one of the things I really appreciate about my work.  There was never any question about taking time off to attend the funeral and support a colleague.  Pretty much the entire office is going, because we care about one another, like a family.

That's a good environment for me and I'm thankful to have found it.

Tuesday 14 June 2016

Promises, Promises

I've been hearing vague promises that the decision to dump children off the waitlist for ABA services was a temporary measure, that a new program is coming which will be designed for those children and that more programs for older children and adults are also supposed to be in place sometime in the next five years.

I'll believe it when I see it.

Now, I don't doubt that the government is well-intentioned but they have a tendency to not think such things through and then get tripped up in the details.  The biggest question I can immediately see is where are they going to find the service providers to run these programs?  The private sector is full and running waitlists.  There's a lot of competition to hire people which means that by definition, there aren't enough people to fill the jobs which are already out there, let alone fill a bunch of new jobs.

I also don't see any evidence of the government encouraging high school and university students to take behavioural therapy or providing grants for people to get those degrees.  So there isn't likely to be an increase in potential job-seekers anytime soon.

(Granted, this or another plan could all be happening.  I'm not omniscient, nor do I have such deep tentacles into the educational world to be certain, but I'm not seeing any evidence of it.)

I don't like the way the government has handled it.  I don't have a problem with the new ABA program.  I think it will be a great one.  But I'm not okay with having dumped a bunch of children and families who need help.

If it had been me setting up this 5 year plan, I would have started at the opposite end: with the adults.  I would have gotten those programs in place and running and then stepped back to deal with teens and youth.  Then school age children.  Then preschoolers.  And finally the initial toddlers.

There are always gaps when setting up a program but this way people wouldn't "age out" into nothing.  The supports would be in place to help people transition.  Doing it the other way practically invites lawsuits like the one currently being rumoured for the families who were cut from the waitlists.  Which is exactly how the ABA program got extended into serving children for whom it wasn't appropriate.  A class action lawsuit forced the government's hand.

That was over ten years ago.  Which means there has been plenty of time to come up with plans and support, so I'm not sympathetic to claims otherwise.

Here's hoping the government has more planned than a sound-byte and a photo op.  Here's hoping they are ready to dig down and do the work necessary to help.

Monday 13 June 2016

Another Day In Montreal

Alex earned another trip to Montreal.  We've adjusted the toileting system and seem to be having some success.  Now on weekends we have him sit twice, once in the morning and once in the afternoon and despite it being a 3 day weekend, we had entirely dribble-free days.  Alex got two successes on Friday, one on Saturday morning and one on Sunday morning.

We've also shortened the "word" he has to spell down to 8-10 letters instead of 10 to 12.  We've noticed that he tends to do worse at the start of the longer word and pick up steam the closer he gets to the end, so a long word may not be the best motivation.

He had a good time.  Since he's over 12 now, he qualifies for the Medical Companion fare, which means an adult rides free with him.  (Apparently the policy is for disabled children over 8, which is not what they told us when we were first asking about that, which is frustrating.)  He still needs to pay an adult fare (since he's now over 12) but it's still a substantial savings.

He enjoyed the usual trip to Eaton Centre and rode the elevators and escalators.  We had a late train back, so he was starting to get pretty tired and restless by the end of it.  I brought his iPad for him to use for the ride home and that kept it from being too difficult.  Sunday ended up being difficult because he was tired and prone to argue, complain and whine.  

I'd forgotten that last weekend was race weekend, until we got to Montreal and saw hundreds of people in F1 gear.  The subway was very crowded but Alex still enjoyed it.  

Friday 10 June 2016

Last PA Day of the School Year

Today is the last PA day for the school year.  After this there are 3 weeks of school and then the summer begins.

On the one hand, I'm ready.  The kids' summer activities are planned (except for riding, which I expect to hear from shortly).  My work schedule has been arranged.  Vacations have been planned.

On the other hand, so very not ready.  I was hoping to be a lot further ahead on my next book, so that I could effectively "take the summer off" from writing and be available to do fun stuff with the kids.   I have to go clothes shopping (which I loathe) for my trip to San Diego.  And there's the usual assortment of other things which need to happen.

Today, I have both kids home and I want to do something fun in the afternoon with them, not just work through the day.  But with Alex's recent bolting and impulsivity issues, there's a limitation on what we can do.  It has to be something which will be relatively deserted and where I can keep an eye on him, but where Nathan will still have fun.  If the trampoline park is open this afternoon, that would be ideal.

Thursday 9 June 2016

Update on Planning For Next Year

I spoke with Alex's teacher and I have a much clearer idea of the kind of support she's suggesting.  I still need to talk with our behaviour specialist and tutor to see if we can make it work, but at least I'm clearer on what I'm asking for.

Alex is a smart cookie and when he's transitioned to new environments in the past, he will "underperform" and set up lowered expectations.  With some support from people who are already familiar with him, we may be able to keep him from regressing too badly.

That's much more manageable that pulling him out of school for half-days (although we may still have to do that if that's the only time available).

We'll take it one step at a time.  And we'll get there.

On the plus side, I just found out that both boys have been approved for summer respite funding from Autism Ontario.  That will definitely help out with costs for the summer.

Wednesday 8 June 2016

Nathan's Big Step

This last week, Nathan has really impressed me with his behaviour.  He's been in a number of difficult situations but has kept his temper.  

He was frustrated at the final Cub meeting when he didn't earn a badge for his good deeds (he had one of the highest number of good deed cards but the award is given to the six based on collective numbers).  He came to me and got a hug but then went back and continued with the closing ceremony.  (He even managed to continue when a leader accidentally bumped into him, a situation which had him in tears and sulks a few weeks ago.)

His teacher tells me that he got frustrated at school, and while he shouted at the child who was bothering him, he calmed down quickly and spoke with her afterwards.  He even came up with some alternate solutions on what to do next time.

He caught Alex breaking apart one of his Lego creations and rather than yelling and screaming, he asked Alex to stop and leave it alone.  Then he asked me to help him put it back together.  He was crying and clearly upset, but he didn't lose his temper.

I'm very proud of him.

Tuesday 7 June 2016

Planning for Next Year

After 3 years at the same school, Alex will be moving to a new school next year.  I don't deal well with unknowns, so facing this change has been nerve-wracking.  I'm hoping that I'll feel more confident once I have a chance to see the school and meet the staff.

Alex's teacher has suggested that we set up therapy for September and October to help Alex through the transition.  I need to talk to her to figure out what she's envisioning.  The company we were working with before only does therapy during daytime hours, so I'd have to pull Alex partially out of school to make that work.  Given that the new school is a 35 minute drive from the house, that would be a big chunk of my day in transit as well.

I also have to wonder how it would work for bringing him up to full days.  Last time, we did it over two months, so we'd be looking at continuing through November and December as well.  Now, if it means that Alex has a smoother transition, I'm willing to do it but it's a big commitment for time and expense.

One of his therapists is still working with him as a tutor twice a week after school.  I'm hoping that maybe having her act as transition support might be feasible.  She'd probably have to come more frequently and I have no idea how that would fit into her schedule, but it would be a more manageable option.

Hopefully we can get some answers before school finishes for the year.

Monday 6 June 2016

Just Tell Us

Over the weekend, I had the chance to observe an individual who I suspect was on the autism spectrum.  He was quite eager to pitch in and help as we set up and took down tents on Saturday, talking constantly about his interests (science fiction and fantasy).  After that was done, he tried to invite himself along to dinner.  I explained that my friend and I were looking to catch up as we hadn't seen each other in awhile and he graciously said "oh, I understand, you'd probably prefer to be on your own."

I watched how other people responded to his inquiries and saw that many of them were quite uncomfortable.  One woman asked if someone could walk her to her car as she was worried he might follow her.  It made me feel quite sad as I suspect he was only trying to build on a social connection but because he wasn't following the accepted and unstated rules of society, people were withdrawing.

This is a challenge that people with autism often face.  They want to connect but somehow their efforts seem to sprout more hostility than friendship.

Wouldn't it be nice if we could simply be comfortable saying: "This isn't an appropriate request when we've only known each other for fifteen minutes" or "While we've been talking as we complete a tedious task, it was not an invitation to a deeper friendship.  Sorry for the misunderstanding."

I really wish people could be more comfortable being honest and direct rather than leave the person on the spectrum to wonder what they did wrong.

Thursday 2 June 2016

Summer Camp confirmed

We just got notice that Alex has been accepted into the school board's summer camp for children with special needs, which runs for 3 weeks in July.

This is great news as most of the other special needs camps have filled up and it would have been quite difficult to find an alternative.  We haven't done this program before, so we'll have to see how it goes.  I'm frustrated by the lack of information.  For planning purposes, I've had to make a lot of assumptions about dates and times rather than being able to truly plan on details.

Things like: will transportation be provided? Where is the camp located? Are the hours the same as a standard school day (9:30 to 3:30) or a standard camp day (8 to 5)?  What kind of activities do they do?

We'll make it work, no matter the circumstances.  But it would be a lot easier to do so if we had some options in advance.

Wednesday 1 June 2016

What Happens When People Aren't On Board

Those who know me will be aware that I have not been impressed with the driver who takes Alex to and from school.  He is an older man, well past retirement age.  In my experience, people of that age only work because they love their jobs or because they have to.  From everything that I've observed, this man does not love his job.

Alex has always had a problem with pushing buttons, particularly in cars.  The van which takes him to school is highly automated, with buttons which will open the trunk and side door within reach of the back seat.  Those buttons will activate even if the van is moving, which has led to problems.  To make matters worse, one of Alex's van-mates gets very agitated when he pushes the buttons, leading to meltdowns.

The school and I have been trying to work on this by offering rewards for a quiet hands trip and consequences for button pushing.  (It's only a 5 minute drive which means Alex should be able to resist temptation.)  We've tried providing a toy to distract him as well.  However, all of this is undermined by the driver, who won't participate or help.

He won't tell me or the teachers if Alex has pushed a button.  (He refuses to speak to me at all, not even to reply to 'good morning' or 'thank you'.)  Half the time, he forgets to disable the buttons so that the doors will remain closed.  The school and I have spoken to the transport company (which may be why the driver is upset and refusing to cooperate) but there hasn't been any change.

The school has suggested I find some kind of puffed glove (like boxing gloves) for Alex to wear so that he won't be physically able to push the buttons.  That would be pretty uncomfortable (not to mention expensive) and I'm reluctant to do it for the month of school which is left.

On the other hand, there is still summer camp transport to deal with and he'll have a new driver and van next year.  After what has likely been a year of pushing buttons, this is going to be a difficult habit to break.

I can have some sympathy for the driver.  It sucks being in a job you don't like in order to pay the bills.  But as far as I'm concerned, this is part of that job and I'm dismayed that the transport company apparently doesn't agree.

One person has chosen not to cooperate and the entire effort has completely fallen apart, leaving Alex with a dangerously-reinforced habit which is going to be very difficult to break.  The gloves may be our only option but it is frustrating, given that this could have been dealt with if we could have only achieved consistency.