What's Going On Inside?

One of the big debates which happens in the autism world is: what is my child really experiencing/understanding/thinking?  Especially if your child has difficulty communicating, it can be impossible to guess what's actually going on in his or her head.

People tend to assume that the child thinks and experiences the world basically the same way as everyone else, with a blockage of "autism" making some senses more intense and keeping the child from sharing those thoughts.  There are always a few inspirational stories floating around the Internet of a severely autistic child who suddenly finds a way to communicate and the family discovers that he/she is basically normal inside.

I don't share that belief.  I look at my son and I believe he experiences the world in a very different way than I do.  I can only guess at what he experiences, but I suspect it's a world where shapes and patterns that I don't perceive stand out in sharp relief for him.  I suspect it's a world where sounds are muted and blur together, like listening to a radio in the next apartment.  I suspect that his brain puts together memories and experiences in a way that I can't even guess at, perhaps as a series of disconnected images.  But I don't know, and I'll probably never know.

We've been cautioned many times by therapists not to assume that Alex understands what is going on around him in the same way that we do.  He's very intelligent so there can be an assumption that he only needs to pay attention and he will grasp something.  But it's not a matter of paying attention.  I think that at times, we are asking him to participate in an entirely alien way of dealing with the world.  It's unfortunately necessary if we want him to have even a basic level of independence.  Otherwise we will have to be his interpreters for the rest of his life.

I'd love to know how he experiences the world.  There are days when I think that is the real blockage facing us: the fact that I can only guess at what is inside his head.  

Driving Dilemma Update

Good news that the new afternoon driver appears to be another nice person.  I know the odds were in our favour, but we've beaten the odds too many times to find much comfort in that.

I still have a lot of concerns about the safety of the transport company's vehicles.  If the obvious stuff isn't being taken care of, then what about the not-so obvious stuff?

It's frustrating to be constantly having to depend on situations which are out of my control.  I have no say in which companies are hired or what standards they are held to.  The byzantine labyrinth of bureaucracy ensures that it's difficult to get straight answers.  Everything is designed to conceal and cover, so that blame can't be thrown.

Driving Dilemma (Yes, Really, That Again)

On the weekend, Alex's afternoon driver contacted us to say that she was quitting the company.  The reason revolves around last week's snow.  Two week's prior to that, she had been asking for snow tires and was told no.  On Monday, when we had a massive (and predicted) snow dump, she was initially told that they might be able to do the tires on Thursday.  She complained and was then told to hurry up in the middle of the day and go to a place to get the snow tires on.  She did so, which took 2 hours.

The company then refused to compensate her for that time.  It was the last straw on the safety and compensation camel.  (They also refused to provide winter wipers, an ice scraper or even help out with a cell plan when they insisted on her carrying a cell phone.)

She offered to give them a week's notice so that they could do a smooth transition.  They told her to leave the keys in the van and that was it.

I'm very glad she contacted us because we have heard nothing from the transport company.  They called this morning to say that Alex has a substitute driver this morning (the third one in a row, which makes me wonder if the morning driver has also quit).  I asked them about the afternoon driver and they were surprised to learn that I knew of the situation.

This isn't the first time that we've seen the penny-pinching in the transport companies.  Four years ago, we complained to the company because the van had bald tires.  Another time, a driver casually mentioned he'd been driving with the "check engine" light on for three weeks and the company refused to do maintenance.

Obviously there's not much profit in the transport industry.  The drivers are barely paid minimum wage when you divide their hours by the route payments.  The schedules are rushed to include as many routes as possible.  The equipment and vans are falling apart and maintenance is put off until the last minute.  Communication is minimal to non-existent.  

I am curious to know if this is all in defiance of OSTA regulations (suggesting they need to spend some time on enforcement) or if the regulations simply don't exist.  Either way, the blind eyes are really starting to bug me.

Alex earned a trip

Last night, Alex earned a trip to Montreal for toileting success.  Over the last few weeks, he's gone from 1 success a week to four in the last 7 days.  I'm hoping this means we've gotten over whatever was blocking him, but I have to be cautious.

Alex has always earned the second half of his reward faster.  (For those who haven't been following, if he has a successful BM in the toilet, he earns a letter.  When he spells a prearranged word, usually 8-10 letters, he earns the trip.)  Most of us do better when we're closer to success than when we're at the beginning.  Incidentally, this is why many "reward" cards and programs start with an initial bonus, so that people can feel like they're well on their way.

We'll have to see if things continue to progress well when we start the next word.  This will be the first time with switching the reward to the alternating system (one trip to Montreal followed by a day at Fun Haven and riding OC Transpo).  If he does begin to drop back, we'll have to figure out if it's lack of motivation for the new reward or the usual early stage reluctance.

Caring For Others and Yourself

Over the last few months, we've been moving my grandmother into a care facility.  She has trouble with her memory and needs full time support.  Since I don't live in the same city, my responsibilities have been minimal, but it still got me thinking.

For the last several years, my aunt has been shouldering the increasing burden of trying to take care of my grandmother so that she could stay in her own home.  It's a big job and one that often involves needing to be patient with the person you're trying to help.

I can sympathize.  Taking care of an infant or small child is relatively easy (okay, maybe not, but in comparison, it is).  Society understands and there are numerous support mechanisms.  Plus, babies are generally cute (except when they're screaming endlessly, but that's another issue).

Having to put in that same level of care and sacrifice into taking care of a parent or an older child is harder.  And they're usually less willing to go along with the caregiver.  Dealing with incontinence, preparing meals that you know will be rejected, swallowing anger to explain something over and over, checking to make sure clothes are suitable, following up on the hundreds of daily tasks necessary to keep life rolling, it gets exhausting.  And unlike with an infant, there's no real end in sight.  For an older child, the care can and does stretch out for decades.  For an elderly parent, it can seem like all there is to look forward to is increasing responsibility until they pass on, which brings its own grief and guilt.

Workplaces don't understand needing to go to appointments, get to the pharmacy before it closes, or needing to take time to fill out application after application.  Most friends don't understand being too exhausted to go out (but those that do are the best, thank you!).  Spouses and other children can naturally resent the lion share of time and effort being sucked into an increasingly large black hole of necessity and need.  The judgment (you should have done x, y or z) builds up fast and can hit you when you least expect it.

Being responsible gets isolating.  Being responsible when there's no one else to take up the responsibility is soul crushing.  

That's why I urge caregivers not to give up the things which matter most.  Carve out time, no matter how hard it is.  Because otherwise, you will get chewed up and spit out by your responsibilities, and then you'll still have to crawl back to your duties.  Take care of yourself.

Immunization Challenges

I've been trying to arrange for Alex to receive his upcoming vaccinations through his family doctor instead of through the school.  He doesn't deal well with needles and crowds so getting jabbed in a gymnasium is not going to go well.  Sounds simple, right?

First, I tried calling my doctor's office and was told: no, we can't give him those vaccinations, you'll have to go through Ottawa Public Health.

Called Ottawa Public Health.  Left a message.

Got a call back 2 days later.  I wasn't in, so I missed it.  Had to call them back.

2 days later, they called back again.  This time I got it.  I had to speak to three different people, all of whom seemed to have trouble understanding what I was asking.  Including one gentleman who gave me a stern lecture on the need to vaccinate my child and how there was no link between vaccines and autism.  (For the record, I agree.  And for the rest of the record, I'm bloody well trying to get my child vaccinated!)  At the end of the call, I was told someone would call me back within the week with a date for a clinic I could bring Alex to.

Four days after that, I got a call from a woman who said she was going over my request and wondered if it wouldn't be easier if they simply released the vaccines to Alex's family doctor so that he could get them in a familiar environment.  I heartily agreed and she said they would send over the vaccines and my doctor should have them within a week or two.  I called my family doctor to alert them.  They said they'd call when the vaccines arrived and set up an appointment.

A month later, no word.  I call the doctor.  They haven't received anything from Public Health.  I go through another round of multi-day call backs and finally get told that due to the backlog of sending out flu vaccines and doing the vaccinations at the school, Alex's request has been shelved.  They'll probably be sent to the doctor sometime in December, maybe January.

And then, as a nice little final insult to injury, I receive a letter from Public Health threatening to suspend Nathan since they don't have a record of his vaccinations.  I've send the records in twice and received confirmation, but obviously the system can't be bothered to actually record that.

This is the sort of garbage that eats up time and energy which frankly, I could be using elsewhere.  Despite having begun this process in September, so as to avoid being caught up in the late fall/early winter backlog, I'm being told in no uncertain terms that my child is not a priority.  Given the challenges and public perception of a link between autism and vaccines, you would think that Public Health would be a little more active in helping families with autism who want to get their children vaccinated.  If I was less determined, this would fall by the wayside and just not happen, leaving a gap that could potentially allow serious diseases to return the way measles has.

It's frustrating to have to make five or six steps where one or two should be sufficient.

Sensory Santa Times Posted on Quickstart

It's that time of year again, the point where Christmas begins its undead rampage across an entire quarter of the year.  (I may have lost some of my Christmas joy after years of working retail... sorry.)

For those wondering, a Sensory Santa is an opportunity to bring your children to see a Santa who has been prepped in dealing with children with autism.  The lines are shorter, the elves will be restrained and the photographers have been briefed.  It's actually a really good experience for those wanting to allow their children to experience the fun of a Santa visit but are concerned about meltdowns.

Quickstart has Sensory Santa times at Carlingwood, Rideau, St. Laurent and Hazeldean.  The times are often before the mall opens or first thing as it openes, so that everything is controlled but it does mean you have to get up early.

We've done the Sensory Santa for the last couple of years and it's been a good experience.  Because only children with autism are allowed in to see Santa at that time, it's not as rushed as visiting during the regular season.

Mr Cranky Pants

Lately, Mr. Alex has been wearing his cranky pants.  Lots of complaining, lots of objecting, very little cooperating.  Which means he's been earning very little screen time.

It's been very frustrating.  No matter how hard I try to avoid taking it personally and remain neutral, a constant and grating chorus of "No " and "Mm-hmm" and ignoring my instructions wears me down.  Some days I just need him to stop talking and stop making it worse, but that's a hard concept for Alex to understand.

What can be even more frustrating is when those around me attempt to intervene and justify his behaviour.  "Oh, he's just trying to express himself" or "He just doesn't want to ".

A little tip for the world at large, if your words to a parent include "just" as one of the first words, that's dismissive of what the parent is trying to do.  (If you think a parent is being abusive, you should definitely intervene, but otherwise, think carefully about what you're saying.)

Here's the thing.  I know and recognize that many children go through whiny and complainy phases.  I know and recognize that it is a standard part of growing up.  I also know and recognize that I am holding my children to a higher standard than is typically done for children their age.

But here's the part that the rest of the world sometimes forgets: I am not doing this because I am a mean, drill-sergeant type parent.  I am doing this because I don't have the luxury of "letting them grow out of it".  My children will not grasp social niceties of when it is acceptable to complain and when it is not.  So therefore I have to give them a hard and fast rule: if someone in a position of authority tells you to do something, then complaining is not an option.  This is necessary if I ever want them to hold a job, interact successfully with the police or otherwise function in society.

Being the bad guy is exhausting.  Being the bad guy while enduring other people's judgment and constant complaining is worse.  But I still do it, because I believe it gives my children the best possible chance for their future, even though the cost to me is very high.  That's being a parent.

Finding Respite Workers

Yesterday I was speaking with a couple of parents who were having trouble finding respite workers to help them out.  If a parent doesn't have suitable family in the area, it can be difficult, but it's not impossible.

Finding someone who can give special needs parents a break is always a difficult proposition.  But as challenging as it is, it's also necessary.  Even if the "break" is having someone watch your child while you take a nap or read a book in another room, every parent needs some time when they're not in charge.

To deal with a child with autism, a respite worker needs to be steady, not easily freaked out, have a sense of humour and be responsible.  That usually lets out hiring the local 12 or 13 year old babysitters.

But there are other places to look:

Algonquin College's applied behaviour program and Ottawa U's early childhood education program.  The students in these programs want to work with kids, and, in the case of Algonquin, want to work with special needs kids.  They're reasonably mature and usually need part-time work as well as practical experience.  The downside is that they usually don't have independent transportation, which can limit their ability to help out.  You can place an ad on the "Jobs" billboards or contact the administration to be put in touch with students seeking work.

Local high schools.  To graduate, a student needs to put in 40 hours of volunteer work.  Respite work for a special needs family counts.  Ask the principal to give your contact information to students who are suitable and looking for part time work.

Scouts Canada and Girl Guides Canada.  The older groups (Venturers and Pathfinders) are of a suitable age and tend to be of a suitable temperment.  Again, contact your local leaders and see if they will put you in touch with potential candidates.

Educational Aides at your local school.  Ask the principal of your local elementary school if any of the educational aides are interested in working part time with your family.  An EA salary is fairly low, so most of them supplement their income with respite and tutoring work.

I've heard of some families who have success sharing a part-time nanny, but this is usually a more expensive and permanent option.  

And one final note, don't be afraid to fire people who aren't working out.  I hired one girl who came highly recommended by our local high school principal, but she would spend her time on her phone rather than interacting with the boys.  I felt very awkward firing her as I didn't want to burn my bridges with the school.  But I did and I quietly explained the issue to the principal and we're still on good terms.

If you find someone good who works well with your family, then that can be a great resource for the future.  We're past the stage of needing daily help, but I still have two respite workers who've been working with us for over five years now and who I can count on for babysitting and other help.

New Toileting Regime

Alex has not gone back to the toileting successes we had before the disruptions of the summer and the school and driver troubles of the fall.  So we needed to make some changes.

We're getting rid of the earning an overnight trip to Montreal by being clean.  He's never earned it, so it may be acting as a discouragement.

We're going to start rotating the big reward: one trip to Montreal and one trip to Fun Haven with a couple of hours on OC Transpo.  That should help with reward saturation.  (It's going to be a bit of hell of Dave and I, since neither of us do well at Fun Haven, but we'll suck it up and make it work.)

We're adding one more sit on the toilet session at the end of the day.  He's been having a lot of BMs in his room in the evening and we're hoping that a final toileting session will encourage it to happen in the toilet instead.

We still have to finish the current cycle under the old system, which may take another two or three weeks (or more).  Hopefully once we switch over, he can go back to having 3-4 successes per week instead of 1 or 2.

Remembrance Day

Today is Remembrance Day.  Today we honour those who have sacrificed to protect others.

I come from a proud military heritage, but today, I don't just honour soldiers.  I also honour police officers and ordinary citizens who have made the ultimate sacrifice to stand up against violence and protect those who needed it.

There is a lot of hate being spewed right now in a number of different directions.  It's horrifying how divisive the last two years have been.  How many newstories about people being attacked because they are different, because they had something that someone else wanted or simply because they were seen as easy targets?

I don't believe it is possible to shout out such things.  Instead, they can be extinguished by acts of kindness.  The act of making sure someone has food to eat and a safe place to sleep.  The act of smiling and talking with someone instead of being afraid.  There are dozens of things we can choose to do every day to break down barriers.

The horrible things in this world can also be stopped by acts of bravery.  And that's what I'm focusing on today.  On the boys who stopped another boy from raping an unconscious woman.  On the women who stood up to a bigoted ranter to protect his victim.  On the men and women who have stood between us and danger and told us: Don't worry, I got this.

Today is the day we can all remember that we can be braver than we imagine and sometimes all courage needs is a tiny spark.

Thank you to every man and woman who has donned a uniform and put his or her life on the line.  Thank you for your example.  Thank you for your courage.  Thank you for your sacrifice.

Update on Alex's Transport

It's been a couple of weeks of silence since I last heard from OSTA or the transportation company.  I had sent them letters outlining the situation and my position, to keep for their records, but so far no response.  Which is fine.  My goal in sending the letters was to make sure they couldn't claim to have been unaware of the situation.

The original afternoon driver is still picking up special needs kids at Alex's school (and presumably other schools) which leaves me with a bad taste in my mouth.  Due to privacy regulations, there's no way I can warn other parents to watch out for what she does with their children.  The company is apparently fine with her actions (or running out her contract).  But that is their decision to make and I know that this is not a fight I want to get into on a long term basis.

Alex's new afternoon driver is wonderful.  She's cheerful and Alex likes her.  There haven't been any problems with her.  

It's good to know that my situation is settled, but I have a sense of civic duty which prevents me from feeling entirely good knowing that I've effectively passed off a "lemon" to someone else.

No Santa Claus Parade This Year

First of all, apologies for the sporadic posting lately.  I seem to be hanging on to my organizational skills by my teeth and fingernails and I'm just not keeping up with all of it.

We had a logistical challenge this week.  Nathan has just begun curling on Saturday mornings and this Saturday morning is the Santa Claus parade.  For the last four years, Nathan has marched in the parade with his Scout group.

Dave and I were trying to decide what to do and it occurred to me that Nathan is getting quite mature and this is easily a decision he could make.

So we put it out to him:

- The Santa Claus parade is only once per year, and curling will be for 4 months
- The teachers are giving instruction each week, so missing a week will mean he'll have to catch up on what they've taught.
- Either way, we'll support his decision

He took a night to think about it and decided not to go to the Santa Claus parade this year.  He reasoned that there would still be plenty of Scouts to help out and he thought it was important to learn the new curling skills.

I'll admit, I probably would have had him do the parade, but I'm proud of him for making the decision on his own.

Can We Please Pick Something Else?

Alex has been having a rough time at school the last few days.  Lots of energy and trouble listening.  (And for those who think he's just bored and not getting enough activity, both of those days were extra activity days with skating and swimming.)  I'm guessing this has been prompted by two factors: increase in sugar after Halloween and a particular Wiggles video.

Alex has been having a lollipop in the evenings after supper from his newly acquired candy stash.  I don't think it's coincidence that his behaviour has suffered at the same time.

But I also think the Wiggles video is having an effect.  It's Black Velvet Band, the story of a prince who falls in love with a girl based solely on her hair accessory (note to world: not the best way to choose a system of government or a life mate).   Alex has been obsessed with the video, scripting it constantly and watching it over and over and over when he has screen time.

The video itself is probably not the issue, but when Alex shows signs of obsession like this, it tends to also be linked to times when we're having trouble with his behaviour.  So today I made him watch something different.  He complained but complied.  We'll see if forcing him to switch up his obsession will help break the pattern.  Sometimes it does, sometimes the obsession simply switches to something new and we're in the exact same situation.

Eternal Vigilance

Every parent is a professional worrier.  There's so much to take care of and whether you consider parents to be more puppetmasters or conductors, most of it falls squarely on one person's shoulders.

I try not to worry about the future, simply because there's so much to take care of in the present.  And frankly, the future scares the heck out of me.

Eventually, I will have to turn Alex over to people who are paid to take care of him, whether in a day program or a home.  As much as I might like to, I will not be able to take care of him myself for the rest of his life.  But the thing is, no matter how dedicated or caring the staff at such places are, at the end of the day, this is their job.  And there are going to be some who are in it because they want the money.

Now, I don't think they'll last long because caring for people with special needs is too hard to be worth the money paid.  But there will be some in that group who will stick with it because they can't find other work.  They will hate it and take it out on their charges.

We've already seen it with two of Alex's drivers.  One couldn't be bothered to give even rudimentary communication or deal with basic safety issues.  And the other actively tried to circumvent the regulations in place to protect Alex.  Those are people who only have to deal with him for maybe 15-20 minutes each day, and they were clearly unsuited to even that small amount.

How much worse will it be when he's in someone's care for hours at a time?  He's not going to be able to tell us if someone is frightening him, except by acting out, which will "justify" any punitive measures.  It's a perfect trap.

And it's exhausting to think about.

Sometimes It Creeps Up On You

Lately I've found myself feeling angry about things.  Not about the kids, but I'll remember an incident which happened years ago and suddenly I'll be even more pissed off than when it actually happened.

Two which have been preying on my mind are when a father picked Alex up to yell at him for knocking into his daughter and when another father began yelling at him during a visit to Cosmic Adventures and then accused me of being a horrible parent for allowing my child out in public.

Here's what I would have liked to say to them:

"You are an adult and you have just terrorized a special needs child.  I hope you feel proud of yourself for using your size to intimidate and pick on my child.  Maybe for your next trick, you can knock over a couple of kids in wheelchairs for hogging space on the sidewalk or attack them for moving so slowly."

Because there is no difference.  Attacking a child with autism for not picking up social cues is like attacking a child in a wheelchair for moving slowly on the sidewalk.  

But it doesn't matter.  Because I'm sure both of those fathers wouldn't care.  That's the problem.  Violating social expectations is something which will always make people upset, some of them will withdraw and some of them will get angry and attack the outlier.  They feel justified and in some cases, obligated to attack, lest someone think they are also an outlier.

I think I've been feeling angry about it because I'm tired of constantly being on guard.  I'm tired of wondering when the next blow is going to come and I'm tired of fighting all the people who insist that these things simply don't happen.  That people aren't offended when Alex breaks the social rules and that the world will just accept him as is because he's trying so very hard.

The world doesn't care about what you're trying to do.  They only care at what you fail to do.