Friday 30 September 2016

Driving Dilemma: Conclusion (This Time For Real)

Another fun roller coaster of bureaucracy.

I told the supervisor about the driver hiding the restraint from me and that I was no longer comfortable with her driving my son.  He said he would look into it.

When he returned to me, he said that the driver claimed the school had been insisting on using the restraint.  I had already spoken with the school, who said that the driver had requested it.  Personally, I believe the school.  The driver's story simply makes no sense.  If the school was insisting on a restraint, they'd insist on it happening for both the morning and afternoon ride.  

Even if the driver was telling the truth, why didn't she seek clarification from me, the school or the company, knowing that this was an issue of contention?  It all just stinks of bullshit.  Those who deliberately break the rules always have excuses ready in case they get caught.

The supervisor pushed me to give the driver another chance and I said I'd think about it.  After a day and a night, I knew I couldn't.  The restraint was something I could see, something concrete that's either off or on, there's no ambiguity.  Who knows what else would be going on that I couldn't see or couldn't prove?

My mother is considering launching a campaign against the transport companies.  We've had more than our fair share of drivers who are clearly unsuited to be transporting special needs children.  Whatever the criteria being used, the standards aren't high enough.  If she does, then I predict a complete system overhaul within five years.

For now, we'll be picking up Alex at the end of the day until another driver can be arranged.  I'm hoping the rest of the process goes smoothly.  I could see how it would be quite easy for the company to leave this in my hands and not be in a hurry to arrange something different.  The supervisor assured me it will be relatively quick, but (as those reading this know), I don't put much stock in promises, only in results.  

Wednesday 28 September 2016

Driving Dilemma: Yet Another Sequel

Yesterday I told our transportation company that I would no longer permit the afternoon driver to transport Alex.

On Thursday and Friday last week, I had noticed that the driver and the other child in the van seemed to be passing something around as they arrived, but wasn't sure what was going on.  On Monday, I saw that what they were passing looked suspiciously like the seatbelt restraint.  So, on Tuesday, I waited outside for them so that I could get a clear view of what was happening.

What I saw was the other child undoing Alex's seatbelt and then removing the restraint and passing it forward to the driver.  

I can't even begin to say how many things are wrong and inappropriate with that.  The driver did not have permission for restraints in the first place and had been told to remove them.  She obviously decided that she was going to continue and then decided to hide it from me.  And she involved another child, who I will presume has a mental or physical issue as they are in special transport.  She took advantage of two vulnerable children in her care with complete disregard for policy and with no attempt to communicate.

I'm not "that parent", the one who raises a fuss over everything and threatens to pull people off willy-nilly.  I'm quite happy to work with everyone involved in Alex's care and always open to negotiation.  But I will not work with someone who is deceptive and who makes unilateral decisions.

I will be picking Alex up until we get alternate transport arranged.  The transportation company is supposed to call me today to discuss the situation.  The supervisor sounded shocked and appalled at what I told him.

Personally, I think the other child's family deserves to be told what has happened and that's an issue that I will be raising during our discussion today.  Whether or not the company chooses to fire the driver, that's their decision.  But no matter what, that driver will never have Alex in her van ever again.

Tuesday 27 September 2016

Anxiety Round Up

I've begun taking Nathan to a psychologist to deal with his anxiety.  I'm hoping that giving Nathan someone objective to talk to will help him to unload some of these dark thoughts before they can brood in his mind.

Of all the family members, I think Nathan has the hardest time.  Dave and I are adults and although Alex's behaviour is hard on us, we have the emotional and physical resources to cope with it.  Nathan has to deal with a great many restrictions due to Alex's capabilities and he is often the brunt of Alex's misbehaviour and aggression.  He doesn't get be the decision maker, so perhaps its not surprising that he seeks to exert control wherever he can.

Nathan is also sensitive, worrying about Alex and the family, no matter how much we tell him that the adults will take care of it.  

It's a tough situation and he needs support of his own to get through it.

Friday 23 September 2016

A Dentist Milestone

Yesterday, Alex had his first ever restraint-free visit to the dentist.  He had a blanket draped over him, but nothing actually holding him down and stopping him from wiggling.

He cooperated beautifully with the dentist, using his iPad to distract himself with music videos.  A few times we had to remind him to lower the iPad so that it wasn't blocking the dentist's light, but he complied and did great.

I'm very proud of him for coming this far.  It's a long way from having to be put under general anesthesia for any work.

Thursday 22 September 2016

Driving Dilemma: Conclusion (Hopefully)

On Tuesday, I managed to get hold of our driver's supervisor and I explained the problems.  He was genuinely shocked (and not in a "I'm covering up" kind of way but in a "I know you're telling the truth but I'm having trouble processing because it's out of character" way) and said that our driver has been with them for 5 years and is well-liked by the parents and kids.  He also told me that the driver had no right to put Alex in restraints without seeking permission from both the company and the parents and that she cannot simply refuse to drive him.

He said he would take care of the situation and talk to the driver.  When he called me back a few minutes later, he said that the driver refusing to drive Alex had been a misunderstanding (I have my doubts about that, but given the language barrier, I'm willing to let it go) and that he'd spoken to her about the restraint issue.  He also told me that he was putting a note in the driver's file so that this would be on record if there were any problems in the future.

On Tuesday afternoon, the driver still had Alex in the seatbelt restraint.  I didn't say anything, just got him out and got him into the house.  I called the supervisor again and left a message explaining that the drop off had gone well but that Alex had still been in the restraints.

The next day, the restraints were gone.  

I suspect there will be some tension for awhile.  It's not a great start to a professional relationship.  But I'm wiling to let things play out as long as she remains civil and professional.  

Tuesday 20 September 2016

Driving Dilemma II: This Time Its Personal

To clarify: our morning driver is lovely.  He's willing to work with me, he has a smile and I trust him with Alex.

Our afternoon driver is a problem, and while I feel some guilt about possibly causing her job problems, it's quickly outweighed by the need to protect Alex.

Yesterday we began with yet another round of leaning on the horn and when I asked her to not do that anymore, her response was that she was in a hurry and didn't have time to wait for me.  I asked again (respectfully but starting to get annoyed) for her to call if there was a concern rather than honking the horn as Alex is sensitive to noise.

I wanted to talk to her about the restraint system that she is insisting on but she only wanted to take off as quickly as possible.  So quickly that Alex's bag was left in her car.  

The restraints really bother me.  Alex has never needed a restraint before and doesn't need one now.  He did try to leave the car (which was inappropriate) but I think that needs to be looked at as part of a larger whole.  He was afraid that she wasn't going to take him home.  And it's not something he's done before.  If I could talk to the driver about the restraints and make sure they were temporary, I'd feel better, but she's either unwilling or unable to talk to me.

After she left, she called my cell and accused Alex of taking something from her car.  She wouldn't tell me what, only that it was "the thing" and that she knew he'd taken it and she wasn't going to drive him anymore if I didn't give it back to her.  I tried to talk to her about the bag and she hung up on me.  I had to call her several different times and got three different misspellings of her address so that we could go pick it up ourselves.

I called the supervisor at the company but missed his return call because I was driving to pick up the bag.  I'm going to try and talk to him again later today.

I don't think I'm a difficult person to deal with.  But this is not an okay way to treat my son or my family and if she is not willing to work with me, then we will not be working with her.  Period.

Monday 19 September 2016

Driving Dilemma

Friday was Alex's first day of official transport to Earl of March and it did not go well at all.

First of all, the person who phoned on Thursday to tell me that transport had been arranged would not give me any details such as the driver's name, contact information or when I might expect my child to be picked up.  I got blown off with a breezy assurance that the driver would be in touch shortly.

The driver called 5 minutes before being there to pick Alex up, which was not at all helpful in making sure Alex had a smooth transition.  Then, I got another call asking if Alex was okay to go into the school by himself.  I said it wasn't and got a "too late" reply.  (In his defence, Alex had simply gotten out of the van with the other student and walked inside, the driver realized he didn't know if that was okay and called me.  He said he hadn't been given any information on Alex except a name and address.  Not cool.)  I called the school and they quickly located Alex, but I was not pleased.

The afternoon driver continued the trend.  She missed our house and then Alex tried to get out at the stop sign.  She then drove past our house and backed up a good 50-60 metres (on what is a very busy street with children).  She then parked in front of our neighbour's house and proceeded to blast the horn.

Very not impressed.  Alex had a miserable evening thanks to the noise and I am seriously considering filing complaints with the company.  Right now, the only debate is whether to complain about the individual drivers or go straight for whoever made these idiotic no contact policies.

Wednesday 14 September 2016

Late Night Creepers

Nathan has a habit of creeping out of bed in the evening, coming down to where Dave and I are watching TV.  Usually we hear him and pause it so that he doesn't see or hear anything inappropriate, but there have been a couple of close calls.

With his anxiety and since he's prone to nightmares, I've tried to explain to him that the stuff that we watch at night can be scary but that it's all pretend.  And I've tried to encourage him to call for us if there's a problem instead of coming down.  (I think he likes trying to catch what we're watching, particularly since we watch a lot of superhero TV.)

Last night, Dave and I were watching the documentary 102 Minutes, which is amateur footage captured on 9/11 in New York.  We waited until 9 to start it, which is usually late enough for Nathan to be asleep.  The documentary itself was heartbreaking, bringing back the feelings of bewilderment and fear that we felt that day.  (I remember feeling stupid about this but by mid-morning, I refused to turn the television off because it seemed like every time I did, something even more horrible would happen.)

The footage was graphic.  There were people falling to their deaths.  People waving out of windows desperately hoping to be rescued.  There were recordings of 911 calls with operators telling people to stay where they were until rescue personnel could reach them.   You could hear screams, you could hear children crying.  They had recordings of radio calls from firefighters up on the higher levels from right before the buildings collapsed.

Nathan came down about halfway through.  I heard him and paused, but I'm not sure what he saw or heard.  We've told him about 9/11 (since it is referenced so often), but kept it very low key, that some bad people tried to scare everyone by hitting buildings with planes, that it was very scary but we learned how to make things safer.  (I'll admit that I'm not entirely certain about that last part, but that's a parental lie I'm quite happy to get behind.)

I tried talking to Nathan to see what he'd seen but he didn't want to talk and I didn't want to make too big a deal about it.  I took him back up to bed and he settled down to sleep.  Hopefully, he didn't see much.  And even if he did, he hopefully will assume it was an adventure program like we usually watch and not attach significance to it.  

Tuesday 13 September 2016

Decision Made and Fast Changes

On Friday, we went to see the proposed new school for Alex.  The program looked good and so by Friday afternoon, the switchover was planned.  He did a half day on Monday at the new school and it went well.  Today is the first full day.

Dave and I have to drive him and pick him up, as it will take some time to arrange transport.  I get the feeling that the staff at the previous school are upset at the rapid transition.

It was a difficult decision.  There were a lot of factors to consider and as I said in my last post, I'll probably never be able to be certain if I've made the right one.  But this is the decision least likely to cause problems down the road and I'll admit that I've been doing this long enough for that to be a big factor.  I know how easy it is to push Alex past what he's comfortable with and how hard it is to get back on track after that.

Now I have to deal with the fact that I probably missed half of my work hours last week trying to deal with this mess, which means working overtime this week.  Which means not as much writing time, which makes me sad and irritable.  

Give it another week or two and then we'll know how Alex is settling into the new program and if there will be any long term consequences.

Friday 9 September 2016

Big Decision: Alex to Stay or Go?

Yesterday we got the call that the spot at a school near us has opened up.  Alex can either stay at his present school or he can go to the new one.  And of course, they want us to make the decision right away (even though we know other families who have postponed such decisions for months).

It's a tough one.  With less than a week of class under his belt, we can't really evaluate the effectiveness of his present school.  On the concerns side: it's further away, it has more integration than the new one, and it's on the short list of schools to be closed next year.  On the plus side, the present school will probably challenge Alex more, they use a lot of technology (which Alex loves) and he seems to get on very well with the staff.

The new school is closer and the program there is modeled on the one at his old school (which Alex had a great deal of success at).  There is no risk of it being closed and he would be with his classmates from the old school.  On the concern side, the school is overcrowded, which means fewer chances for integration (or at least successful integration) and moving him would mean hitting Alex with two big back-to-back transitions, which could have a huge impact on his behaviour.

I find the biggest anxiety rattling in my head is wondering whether or not I'm evaluating Alex's potential accurately.  Is the present school too challenging, would we be setting him up for failure?  Or, if we switch to the new one, would we be choosing a safe road and thus potentially not allowing Alex to grow as much as he could?  

The present school does a lot of integration to prepare the kids for a high school environment, where they'll have to move between classes and eat lunch in a cafeteria instead of classrooms, etc.  The new school doesn't do an integrated lunch.  Now, Alex would have a lot of trouble with an integrated lunch.  He doesn't like being around other people eating and finds it noisy and irritating.  But would he get used to it if he had to deal with it every day or would he get overwhelmed and act out to avoid having to deal with it in the first place?

I don't know the answers and unfortunately, there's no way for me to know.  I'll have to make the decision and then deal with the fact that I'll have to wonder if I'm making the right one.  We're going for a school visit today to meet the teacher and get a look at the new school's program.  And then we're going to have some serious decisions to make.

Thursday 8 September 2016

Alex's First Days at School

We knew that moving to a new school would cause some behaviour problems for Alex.  Any time we have a major transition, he tests the boundaries.

The first day did not go well (but not worse than we really expected).  Lots of verbal protests, some headbanging and bolting attempts.  The second day had a toileting accident and a major bolt where he actually got off school property (but then stopped because he's not familiar with the neighbourhood yet).

I had warned the school that he was likely to run and that he is both very quick and able to take advantage of momentary distraction.  But like so many of Alex's skills, sometimes it has to be seen before it can be believed.

This is one situation where it would have been incredibly helpful to have the service dog already.  The dog would go with him, physically slowing him down and allowing him to be tracked if he does escape.  The teacher could hook the lead to Alex's belt before heading out, allowing him to have some freedom and the staff to not have to be on heightened vigilance.

But we haven't gotten any word about the fall class, which means that it will be March or April at the earliest (assuming we are even in that class, which I'm not holding my breath on).  

I'm hopeful that Alex will settle into a routine and start to show them what a great kid he can be.  Then he can continue the progress that he was making at his old school.

Wednesday 7 September 2016

White Flagging

It's official.  The universe has no sense of proportion and I'm sinking.

I've hit my limit on things I can manage and stuff is dropping like flies.  So I'm waving the white flag of surrender and accepting that not only will I not be able to manage things smoothly, but I will have to accept that some things simply will not get done until a later date (if at all).

I've been trying to simultaneously:

- edit my manuscript for my next book release as Jennifer Carole Lewis
- prepare for Can-Con this weekend (I'll be selling books and giving workshops)
- arrange for a psychologist outside of my work to see Nathan to help with his anxiety (the people at my office are good, but he wants someone I don't know)
- manage back to school anxiety and routine change behaviour disruptions for both boys
- manage Alex's transition to a new school
- try to find out more information on the possible transfer to yet another new school
- replace the headphones, plates, measuring cups and computer cables that Alex has destroyed in the last few weeks
- pick up the "wasn't on the list but still need it" school supplies
- fill out all the back to school paperwork for both boys (so far 15 pages and counting)
- maintain the "no verbal protest" and toileting behaviour programs for Alex
- begin a "reward for truth" program for Nathan
- keep up all the household work and routines to get Alex out the door by 7:30, Nathan out the door by 9 and me beginning work by 8:30
- oversee the transition therapy program every day after school for Alex
- deal with the extra laundry from a new spate of bedwetting and toileting failures for Alex
- find information on extracurricular programs for Alex for the fall and winter
- get Nathan organized for Cubs and his fall/winter extracurricular programs

It's too much.  So I have to accept that some of it is not going to happen and concentrate on the stuff that I can do.  That's hard for me.  

I'm setting myself a daily to-do list of 3 items to deal with while Alex is in his afternoon therapy.  That way I don't get overwhelmed and find myself doing nothing.  But the number of responsibilities is weighing on me, interrupting my sleep and making it hard to relax.  I keep telling myself this is life and as important as everything is, I need to protect myself because if I go down, the whole system crashes.  (No offense to my husband but he's not anywhere near prepared to step in and deal with what I deal with.  It would crash.)

So I'm taking care of me.  And hoping there's not too much failure fallout.

Thursday 1 September 2016

School Closures and Decisions

Yesterday, the "updated" report came out from the Ottawa school board, basically giving the exact same information which was given in the fall, a list of schools that are under review to be closed.  Alex's new school is one of the ones listed.

Although I'm sure this won't make me popular with many people, I actually think that combining smaller schools that are half-empty makes sense, especially given the crowding in many other schools.  (Though, I'll admit I'd be equally pleased at busing students from full schools into the half-empty ones if people really want to keep their local schools, but that solution never seems to be one that's considered.)

We won't know until spring whether or not Alex's school will be closed for the following fall.  Knowing the school board, they will delay until the last possible moment, leaving us with precious little time to adjust.  (This is a real pet peeve of mine, since a smooth transition for a child with autism requires a lot of warning and preparation.)

The big questions are: If the school closes, where does he go?  And how will Alex cope with having to make two back-to-back switches?  

We don't know the answers to them.  The first is in the hands of the school board, and I don't expect them to be forthcoming.  I'm sure the contingency plans are already in place but they will refuse to share them with us.  The second we'll only discover once the situation occurs.