Monday 25 July 2016

Regression and a break

First of all, after today, I'm going to be taking two weeks off.  Work is shutdown for our summer break and the kids will be spending time with their grandparents, so I'm going to give myself a little holiday.  I'll be back to regular posting on August 8th.

Things have not been going particularly smoothly here over the weekend.  Alex left his Rosita toy in the van on Friday and is upset about Nathan getting to go first to see Memee and Avi.  This has given us a lot of verbal opposition, some headbanging, and most frustratingly, a regression on toileting.

Alex has only had one success in the toilet in the last week and he is one letter away from earning his trip to Montreal.  We've had a lot of production in the bucket and one accident, but only one production in the toilet.  Dave and I are coming up with our plan B on what to do if he doesn't earn his trip before he goes with his grandparents.

We knew the summer was going to be disruptive.  There are always more behaviour issues as the schedule keeps shifting around and we suspected that toileting would be a particular challenge.  It's a little depressing to be right, as he's done so well up to this point.  But with consistency, we should be able to get him back on track.

Thursday 21 July 2016

Lost and Found Pocoyo

While I was away last week, Alex's favourite toy, Pocoyo, went missing.  There's some confusion about where and when it happened and the delay means that we're not going to be able to get it back.  Alex says he left it at the McDonald's near his summer school, but that would have meant he'd brought it to school, which seems unlikely.

It was a tough moment.  To get the toy last time, my parents ordered it from Europe and it had to go through a couple of intermediate steps before it got to us.  Last year, we thought we'd lost Pocoyo and a search revealed that the store where we'd bought it before wasn't selling it any longer.  So we were resigning ourselves to a reality where Pocoyo was really gone.

Last night I sat down at the computer and though "I'll just check".  I had some time to kill and maybe I might find a collector's site or something.

To my surprise, had a 6 inch Pocoyo plush toy for under $ 10 + shipping.  It looks a little different than the one he had before, but fairly close.  It should be a close match.

We ordered it and it should be here in the next few weeks, guaranteeing that we'll find the original tucked into a corner of the basement somewhere.  But either way, he'll still have his favourite toy and some surprised but relieved parents.

Wednesday 20 July 2016

Alex Phone Home

We got a note from camp that Alex has been asking to come home during the day.  I thought this would be a great example of the challenge of figuring out what he actually wants.  It seems fairly straightforward on the surface: he's asking to come home.  But things are not always what they seem:

1) He could be sick and wanting to come home.  

We all want to be home when we're sick and sometimes Alex asking to come home is his way of telling people that he's not feeling well.  When this is the case, we have to check for actual symptoms before making any decisions.

2) He could be bored and wanting to leave.  

Somewhere along the way, Alex has figured out that asking to go home is one of those requests that people always consider.  Thus it has become his go-to request when he doesn't like an activity, like going to the grocery store.  The clue for this one is to see if there's a pattern to his requests.

3) He could be feeling sad or homesick.  

Alex has a hard time explaining his feelings, so he tends to focus on practical details.  "Alex go home" could mean that he is feeling overwhelmed or sad and wants the comfort of being home.  If that's the case, he'll usually be lethargic or withdrawn.  

4) He could not want to do the work.

"Alex go home" can also mean "I don't want to do this", especially at school when they're asking him to do academic work.  Again, he's figured out that it is a request that people take seriously, so he uses it to avoid work.

5) He wants a preferred activity at home.

Sometimes he doesn't need to be doing work, sometimes he'd just rather be at home on the computer or watching the buses.  If that's the case, it's usually fairly easy to distract him away from his request with something else enjoyable.

6) Something has upset him and he wants his parents.

This one is probably the rarest one.  If he's upset, he's more likely to tantrum than use his words.  But he's getting better about speaking instead of screaming, so we have to consider it.  If he's upset, it will be obvious that he's upset and any delay or refusal will quickly spark a tantrum.

It's a lot of analysis to have to put into a simple request but when dealing with a child with limited communication skills, it's necessary.  With Alex, we always have to look at the surrounding circumstances: what he's doing and what he's *not* doing.  Then, maybe, we have a chance at figuring it out.

Tuesday 19 July 2016

I'm Not Irreplacable

Sometimes I think the hardest part about being a parent of a special needs child is feeling that I need to do everything myself.  I know there are a lot of parents who feel that way but I think there's an extra justification when the consequences for delegation are more severe.  When having the sandwich cut diagonal instead of in squares can cause a two day tantrum, it's a lot harder to let go.

But it is necessary to do it, no matter how difficult.  Otherwise, things shift from an "I should be the one to do this" to "I must be the one to do this" to "I can't find anyone else to do this" and then parents find themselves burning out because there literally isn't anyone else to step into the breach.

It's a challenge.  I know that sending the boys with my parents or leaving them with my husband for a few days will mean that things are not done the way I would do them.  Some of what I do has become automatic over the years, which means I can't pass on the information.  Some of the choices I make are from years of observation and educating myself, combined with practical experience on the ground, something which can't be duplicated.  So those who haven't put in that same intensity of preparation can't be expected to be able to draw from it.

I remind myself that I'm certainly not perfect.  I can't always avoid or prevent the meltdowns, toys have been lost on my watch and I've dropped the ball on behaviour programs sometimes.  So it's okay if other people aren't perfect.  They are going through their own learning curve.

Yes, there will be long term consequences to their mistakes and I'm likely the one who has to deal with them.  But that's life and the alternative is worse.  In the end, I know that they care about Alex and Nathan and are doing their best.  So if there are mistakes, I cope with them.  It's not the end of the world if Alex's hair gets cut or if Nathan sleeps with the light on for a weekend.  I just make a note for next time and keep moving.

Friday 15 July 2016

Thinking Long Term

My sister recently went on long-term disability.  It's made me think about what Alex will go through when he gets older.

Hopefully he won't have the kind of paperwork trouble that she did, since there will already be a long and unvaried history of him needing help.  But on the other hand, he will likely need more supports in place than she does, which could be a challenge.

Usually, I try not to think too hard about the future.  We make regular contributions to Alex's Registered Disability Savings Plan to ensure he has adequate funding for whatever he will need.  We work on his behaviour with an eye to giving him the greatest possible level of independence and security.  But that's really as far as my planning goes.

I simply don't know where he will go or what he will need or what will be available.  Will we be required to provide everything?  How much will be offset by Ontario Disability?

The questions pile up fast and there's no way to really know the answers.  The system is in flux.  We even questioned setting up the RDSP, since it will be 60+ years before Alex can access that money and who knows what the government's and society's position will be at that time?  (And for those who think I'm worrying over nothing, 60 years ago it was still okay to forcibly sterilize someone or lobotomize them if they were a mental patient.)  In the end, we decided the compound interest was something we needed but that doesn't stop me from worrying.

All I can do is try to build a solid foundation.  And hope that the trend of inclusion and acceptance continues.

Thursday 14 July 2016

Social Blindness

We were talking recently at work and one of the clinicians shared a story about a client.  They had taken a break for a few weeks due to a death in the family and upon their return to work, a severely autistic child came up and said, bluntly and directly: "I'm sorry about your dead dad."

Now, just about everyone who read that probably had a quick intake of breath or a burst of tension driven laughter.  Some might even have been offended.  But we need to take a closer look.

That child left a preferred activity to come and communicate with the clinician.  They formed and said a verbal sentence, something which is not simple for this child to do.  They understood that the death was a bad thing and expressed sympathy and caring.  They weren't prompted to do or say something, this was entirely spontaneous.  The family confirmed that they hadn't spoken to the child about it and in fact, had assumed that it would be beyond their comprehension.

But clearly this child did understand, at least in part.  Though their effort may have been considered offensive to someone who did not understand their limitations, it was a sincere effort.

On the flip side of this, we have to ask ourselves: why is that such a horrible way to express condolences?  

The clinician said that they discussed it with several other colleagues.  They spent over an hour trying to parse the social rules which made "I'm sorry about your dead dad" not okay.  Obviously the message itself isn't bad.  In the end, they came to an admittedly unsatisfactory conclusion that it is not okay to refer to a person as "dead" in such a blunt fashion.  At least four highly trained specialists, all used to breaking down social rules for children with autism, and they couldn't find a way to express the understood but unsaid expectations of appropriate condolences.

Now imagine how frustrating that must be to someone for whom all social rules are like that.  All they know is that once again, they have somehow stepped over an invisible border and now have to face hostility or censure.  It's no wonder that people with autism tend to suffer from depression and anxiety.

In the end, the clinician accepted the child's condolences at face value and in the sense intended: as a gesture of compassion.

Wednesday 13 July 2016

Note from Transport

Last week, the driver told us that Alex had been caught peeling away the rubber strips sealing the doors and windows in the van.  Today we got the incident report and there appears to have been more than we initially understood.

In the report, it said that Alex hit the driver twice when he tried to stop Alex from doing it.

That just sinks my stomach.  I want to say "maybe the driver handled it poorly and Alex struck out" but even if that is the case, it is still unacceptable behaviour.

We can't do anything further about it at this time.  He was punished for stripping the rubber (which he knows not to do) and he's not allowed to sit beside that particular temptation any more, reducing the chance of further incident.  The driver still seems to like Alex and be in a good mood, so that's a relief of sorts.

Hopefully this is just a blip.  But it makes me wonder: if he accumulates too many reports, will Alex still be permitted to be in the special transport vans?

I want to say that he will.  Particularly because I've seen children getting quite agitated and violent in his previous van with no apparent consequences.  However, I suspect that driver was not the sort to file reports or let anyone else know about problems, so I can't really use anything which happened in his van as an example.

We know what we need to do if this begins to be a problem: institute consistent consquences for negative behaviour and give consistent rewards for positive behaviour.  Now we just wait and see if we need to put a plan in place.

Tuesday 12 July 2016

Understanding "You Were Late"

Nathan's first day of camp went well.  I didn't get a chance to speak with the counsellor, but the others said it looked like everyone was having fun. (And frankly, Nathan is loud enough when he has a fit that everyone in that building would have heard it.)

The only issue was that Nathan was expecting me right at 4 to pick him up, but I wasn't able to get there before 4:30.  I thought I had told him that was when I would be there (since I had to wait for Alex to get home first) but apparently I hadn't and he was getting worried.

He met me at the door of the camp with a scowl and his backpack all ready to go.  He immediately told me that I was late.  One of the supervisors started to correct Nathan (obviously not wanting me to feel bad) but I stopped him.  If Nathan was expecting me at 4, then I'm late, regardless of whether or not I was expecting to be there at 4.

This is one of those tricky social situations.  Nathan needs to have his discomfort and fears acknowledged.  When he says "you were late" it's less about the time and more about him having the experience of being anxious and wondering when I'm going to be there.  I have to let him know that I understand that feeling and that I'm not going to try and take the experience away from him.  I hate to use the term "validate" since it's overused, but that's basically what it is.  I demonstrate that his feelings are important and I don't dismiss them.

For the rest of society, there is an understood blame attached to "you were late".  We are saying: not only did I have to spend time wondering when and if you were going to show up, but I believe that you did so in a deliberate fashion with either intention or complete disregard of my upset.  That's the part that the supervisor was trying to off-set.  But Nathan doesn't see beyond the literalness of "I thought she was going to be here by now and she's not."

We had a long talk about the fact that he wouldn't be picked up before 4:30 most days and that it would be okay.  Once he understands what to expect, he'll be fine.  And hopefully that's the worst experience for his camp.

Monday 11 July 2016

First Day of Camp for Nathan

Today is Nathan's first day of camp for the summer.  This week he's learning about making movies and this is the camp I've been most worried about.  He'll be one of the youngest children there and I hope that it's going to be all right.

He's done well in 95% of the camps we've put him into, but the one he didn't do well with was one where he was one of the younger children and the counsellors didn't give him transition warnings.  He ended up coming home and not going back to camp after the second day.

I'm hoping that this one works well for him.  I keep reminding myself that the worst case scenario is that he stays home and doesn't go.  Which, in the grand scheme of things, isn't that bad.

He's excited about the class, which is a good sign.

Guess I'll just have to wait and see.

Friday 8 July 2016

Review on Alex's First Week of Camp

Those who follow this blog know that I did not start out impressed with the OCDSB's summer camp for Alex.  I'm still not impressed with whatever bureaucratic garbage led to us not getting our initial package and a complete refusal to return my calls, but that's an administrative issue and I want to focus on the actual people and activities at the camp.

The teacher and two aides have been great.  Alex has come home in a good mood and from the description of activities, he's been having a good time.  They go to splash pads, they've gone to the Experimental Farm, McDonald's and Tim Horton's, the Sci and Tech museum brought them interactive displays and they go swimming once a week.  It's a lot of great activities and he's been having a blast.

The driver is pleasant and cheerful, which makes for a big change from the last few years.  He let me know that Alex tried to peel off the rubber strips around the door and apologized but said he needed to file an incident report so that the teachers would be able to help Alex deal with it.  I told him no problem and that he had our support to try and make sure it didn't happen again.  A very welcome change from refusing to even tell us when a problem had occurred.

The only downside to all this is the timing.  Alex needs to be ready to go by 7 am, when he's used to waking up between 7 and 7:30.  He's home at 3:30, but it's a long day for him and I can see he's getting tired with the early start times.  But for 3 weeks, it's worth it.

Thursday 7 July 2016

Keeping Rewards Fresh

For the last several months, Alex has been earning train rides to Montreal as a reward for toileting.  Lately, the train schedule hasn't been as cooperative, and the trips have been longer than ideal, leaving Alex restless and cranky by the end.

This puts us in a bit of a dilemma.  The reward has calcified.  Alex expects the trip to follow a certain pattern: train, go to the Eaton Centre, ride the elevators and escalators, eat at A&W, more riding elevators and escalators and then go home on the train.  When we don't have to spend more than 3 hours in Montreal, it works.

However, the schedule lately has ended up with 5-6 hours in Montreal, which is too long.  But Alex doesn't have the mental flexibility to alter his schedule.

In the past, when rewards calcify, then satiation usually follows.  So I need a plan to break the routine while still making sure Alex gets the reward he wants.  (I think it doesn't help that my parents, who have been taking him on the trip, are heartily bored of the Eaton Centre and the escalator rides.)  

I'm thinking that I'll start making him walk around outside for awhile before we go into the Eaton Centre.  Hopefully that will give us a chance to find another activity that he will enjoy.

Wednesday 6 July 2016

Upper Canada Village Introduces Sensory Friendly Sunday Mornings

Upper Canada Village has created a program for children with autism.  On Sunday mornings, the village will provide maps to visitors which will show areas for potential sensory overload (such as the sawmill), as well as 3 quiet zones for families to retreat.  The actors and staff will do a "toned-down" version of their usual routines to avoid overloading.  Children with autism will be identified by a special bracelet, which will allow staff to recognize them.

This sounds like a great inclusion to me (although having to get up early enough to take advantage of it may be a problem).  But it's a good effort and allows families a chance to get out in an accepting environment, which is not as easy or common as it should be.

Tuesday 5 July 2016

Update on Summer Camp for Alex

I'm just too tired to try and come up with a catchy title for this one.

Alex did end up going to his camp program yesterday.  I called the transport company and they said he was on the list and the driver should be there at 7:20.  The driver actually showed up at 7:05, which meant that Alex didn't get his full screen time but he accepted it well.

The driver was very nice, greeting Alex by name.  Alex requested his favourite radio station and the driver replied quickly with a "No problem at all."  It's a very pleasant change to have a driver who actually likes his job (or at least can fake liking it).

Alex's teacher called at 9:30 to let me know what was going on.  She only received notice of who was going to be in the class that morning but the school board should have sent me an orientation package over a month ago.  She said she would look into what happened as it appeared that the other children had gotten their packages.

It's still frustrating.  Especially given that I spent the last week of school trying to get someone in the school board to talk to me.  I got a lot of "not my department" run arounds and people who just didn't call me back.  You would think that someone, somewhere might have put this together and said "Hey, let's check and see if she got the package we were supposed to send" rather than brushing me off, but apparently not.

At least the people actually dealing with Alex are nice people who seem to have a good grasp on how to deal with him.  He seems to be having a good time.

Monday 4 July 2016

Total Radio Silence

As I write this, it is 10:20 at night and tomorrow morning I am supposed to hand over my child to a completely unknown situation.

I have not received any official information from either the transport driver or the summer school program.  I didn't even get an official notice that Alex was accepted, just a message passed on through his teacher.  I wasn't told where the program will be, the hours it will run or the dates for the program.  

I managed to find out where the program was being held through other parents who had done this before.  I badgered the transport company into giving me the hours.  The school calendar and the transport company are obviously running on different calendars since they give different start dates.

Because none of this was official, I can't know for certain that any of the information I have is correct.  I kept being told that I would get official contact "later" and "later" has officially run out.

This is not even a little bit acceptable.  Even if the transport company shows up tomorrow (which I'll say is a big if since I haven't heard from the driver and it wouldn't be the first time there was a communication issue which left us stranded), I'm not sure I'm comfortable letting Alex go.  I have no idea who he'll be working with or what the program will be.  All I have is hearsay.

I'm very tired of a standard operating procedure which seems to feel that the parents are entirely optional and which forgets or doesn't understand that children with autism need help with transitions.  (Heck, any child needs some basic understanding of what's going on!)

What they have done is not okay.  Which leaves me with a very difficult decision for tomorrow.