Cafe in Ottawa Employs Youths and Adults with Autism

Ys Owl Maclure, a group which helps adults with autism navigate the world, has opened a cafe to provide jobs for youths and adults with autism.

I think this is great.  A lot of people on the spectrum have trouble with the interview process, so having some solid experience could make a big difference in future job prospects.  And it exposes more people in the community to those with autism and can help them to understand that not looking someone in the eye doesn't mean there isn't a caring and competent person on the other side of the counter.

Stepping It Up for Toileting

Alex has begun to have some regular successes on the toilet since we began the program of letting him have his iPad for 10 minutes on the toilet on coming home from school.  However, those successes are still very limited by circumstance.  He has only achieved success when he has been away from home for the majority of the day in a place where he doesn't feel comfortable soiling himself.  Right now, that basically just means school, so we haven't had any successes on weekends, PA days or school holidays.

With March Break and summer starting to peer around the corner at us, we need to start thinking of ways to encourage him to get to the next level, which would be recognizing that he needs to go and going to the toilet rather than having an accident.

Our behavioural specialist suggested that we come up with a really big reward for multiple successes.  In this case, we've told him that he can earn a train ride to Montreal if he spells "TOILET" (he gets one letter for each success).  He likes the train and it's certainly not something he's earning through anything else.  

We've never had more than two successes per week, so we're hoping this will encourage him to break through that comfort zone.

We'll have to see what happens.  This has been an agonizingly long process.  I overheard two moms talking last week and one was complaining that it had taken her toddler 4 months to toilet train.  The other mom was properly sympathetic about how difficult that must have been to be constantly cleaning up accidents.  

I couldn't help myself.  I laughed out loud.  And when they began getting upset, I explained that I have a special needs child and have been working on toileting for almost 10 years.  Not exactly what's in the brochure when they send your new baby home from the hospital.

I don't expect this to be a quick dash to the finish line.  It could be another two or even five years before we get anything resembling reliability, assuming that we continue to progress.  It took Alex over four years to begin to be able to manage urination and he still needs reminders or else he'll have accidents.  I'm sure that BMs won't be any simpler.

Update on the Sad Day

The morning was a challenge, no two ways about it.  One wet bed to deal with right away and both kids sleepy from being up late the night before.  Then we had a minor tantrum over breakfast not being the way Nathan wanted it and another from both Nathan and Alex over who got to go first for getting their post-breakfast medicine and teeth time (first done usually gets first pick of the screens).  Still, I managed to keep everyone scrambling towards getting ready and I even found the time to quickly go through my work computer and phone to see if there were any urgent messages.

One final upset before leaving the house, Nathan felt his cookie was too cold from having been in the fridge.  I suggested he get himself a new cookie and the problem was solved without tears.  Then it was time to herd my boys into their snowsuits and start walking Nathan to school so that we would be home in time for Alex's van.  Alex was not happy about having to walk to school and let us know in a continual stream of complaints and demands to go back home.

Nathan asked why I was heading out and I explained that I was going to a funeral, which is where people gather when someone dies.  He asked why we celebrate that.  I decided not to deal with his word choice of "celebrate" and explained that when someone dies, the people who loved them are very sad and need lots of hugs and friends, so we gather together.

We dropped Nathan off just as the teachers were coming on duty and then had to hustle back.  Alex's van can come at any time in a 20 minute window and there's no second chance if you're not there when it arrives.  With the weather, I was hoping it would not be running early and it arrived about 15 minutes into the window.

With the kids delivered to their respective schools, it was time for me to brave the roads to the funeral home.  It took me about half again the usual driving time but I still made it before the pre-funeral visitation was finished.

The service was very nice, with the deceased's sister giving a beautiful speech about how her sister's prime focus was making sure that her family and friends had lots of wonderful memories.  How even a trip to Tim Hortons could be made into a special event.  After, our group of friends had a chance to catch up and talk.  It was great getting to see everyone, even if the circumstances weren't the best.

I ended up working through the afternoon instead of writing but the rest of the day went relatively smoothly.  Alex even earned another trip to McDonald's for having success on the toilet.  

It was a lot of work being the only adult.  My days are full enough as it is, which means something gets dropped when something else is added to my plate.  But we got through, so I'll count it as a win.

Sad Day

Today I have a funeral for the mother of one of my good friends.  Today, I am also a single parent since Dave had an on-site client visit at 7 am.  And if the weather is as expected, today will also be a snow day.

Today will be a test of resourcefulness and logistics.  I have a PhD in getting stuff done despite less than ideal conditions, but it'll be a stretch.

Tune in tomorrow to see how it went.

Making Decisions for Summer

As obscene as it is to be having to nail down the summer plans while there's still over a metre of snow on the ground, it is indeed that time.

The City of Ottawa opens registration for its spring and summer programs on March 7th.  Last year, a lot of the specialty camps filled up very quickly, so I sat down with Nathan over the weekend and we picked out the camps he wants to go to.  He's picked one on movie making, Minecraft, one where they make a stop-motion film and magic camp.  I'm a little worried about the movie making one.  It's for 9-13 year olds, which means he'd be one of the youngest children there.  He didn't do well in the science camp a few years ago (the counselors didn't give him the support he needed).  It's also the same week I'll be away, so Dave will be on his own for dealing with it.

Alex is presenting more of a challenge.  We want him to try some day camps but there isn't a whole lot of selection and most of the private programs don't have their schedules for 2016 up.  I'm worried about ending up with him being completely unscheduled for a large chunk of the summer, which would not go well for me.

My preference would be to rotate so that I have one child home and one child at camp each week.  That way I can do something special in the afternoon with whomever is home and still have a decent shot at getting my work done.  Writing will be a challenge but it always is in the summer.

Then there's therapeutic riding.  If we can get an evening slot like last year, then we may be able to keep going but if we can't, then it's just not going to work out.

It's a lot of pieces to juggle and I have to get them firmed up in the next few weeks, knowing that some of them will be out of my control.

Little Mr. Independent

Nathan's been getting more on the "I'll do it myself" train, so I've been trying to find a balance between making sure things are done properly and letting him be independent.  Case in point: teeth brushing.

Up until recently, Nathan preferred to have us brush his teeth in the morning but lately he's been wanting to do it himself.  Unfortunately, like most kids, his technique is a little skimpy and unevenly applied.

My first solution: a timer.  He has to brush for two minutes while we watch.  Plenty of time to make sure every tooth was scrubbed.

Problem: he tended to focus on only brushing the back teeth, giving the front ones only a token effort.

New solution: now he has to spend 30 seconds of his two minutes on his front teeth.  

Guess the dentist will be the one to tell us if we're kidding ourselves or if we're on the right track.

Let It Snow, Let It Snow, Let It Snow ... Okay it can stop now

Two snow days in a row.  Ugh.  Yesterday was a complete mess.  We ended up with gridlock at Nathan's school as parents stopped to pick up their kids and ended up blocking the entire road.  (We sat hemmed in by minivans for over twenty minutes.)

In retrospect, it was an interesting balance of social awareness.  The school is on a standard two lane residential road.  With the snowbanks and minimal plowing, there was not enough room for more than one car to pass if anyone stopped on the side of the road.  If two cars stop, one going each way, the road was plugged.

Now, we all understand that we are all trying to pick up our kids and that it is a difficult and tricky situation.  People were having to walk on the road because the sidewalks were still buried (past chin height on some of the littler kids) and cars were everywhere, which mean drivers had to be constantly aware that a pedestrian might dash out between the cars at any moment.

One van stopped in front of the school and was waiting for the family's children to come.  Unfortunately, those kids were running late.  Now, most cars were circling.  If the kids weren't out front, then they would drive around the block to make another pass, thus keep the whole system creakily moving.  This van decided to stop and wait, opposite an empty car whose owner had obviously gone onto the school lot to pick up their child.  Immediate gridlock.

If it had only been for a few minutes, people probably would have understood.  But as time ticked on, people got more ticked off.  You could see parents getting out of their cars to figure out where the blockage was, muttering to themselves and passersby.  But it took almost twenty minutes before tempers flamed to the point that someone approached the blocking van.

This is one of the things which bothers me.  People won't approach someone who is doing something inconsiderate or mildly offensive until they've reached such a boiling point that all hopes of a polite and productive interaction are gone.  The person in the van was being inconsiderate, but didn't deserve to be yelled at by three or four other people.  (I was five cars down with the engine running and windows up and I could still hear them shouting.)  Since my kids and other people with autism are unlikely to pick up on the more subtle social cues or even be aware of the social protocols, they are likely to get more than their fair share of frustrated shouting.

Maybe I'm not aware of the whole story.  Maybe people had politely gone and asked the driver to move or pointed out that he or she was causing a major blockage.  Maybe that driver was picking up a handicapped student and couldn't risk having them stand out in the cold.  (The school driveway was blocked by a couple of cars which had gotten stuck in the snow.)  Maybe there were good reasons on everyone's side for why they acted the way they did.  But it certainly didn't play out in a pleasant fashion.

Sens Game and Free Workshop

The Ottawa Senators are hosting an Autism Awareness night on Tuesday, March 15th as they play the Minnesota Wild at CTC.  Quickstart Autism is among the charities receiving funds.  Tickets are available at a discounted rate with the promo code AWARE.

And Coordinated Access is hosting a free workshop on Monday March 21st at the RA Centre: Supporting Individuals with ASD: Making Sense of the Diagnosis, Effective Tools and Intervention Strategies.  To register contact Cathy Lonergan at cathy@coordinatedaccess.ca or Claire Cantin at claire@coordinatedaccess.ca.

Meeting with Developmental Services

I met yesterday with our representative from Developmental Services, which is the group which coordinates funding and programs for children once they hit 18.  A lot of their waitlists are ridiculous (double digits with years) so I wanted to start talking about finding placements for Alex when he gets older.

Too bad, DSO wasn't on the same page.  They won't accept an application for him until he's 16 and he won't go on any lists until he's 18.  The worker was helpful and polite, going through different options so that I can be aware of what's out there, but apparently I'm already signed up for everything Alex qualifies for.

It's frustrating to be back in a "wait it out" situation.  The worker did tell me that there are private options which we can pursue in terms of day programs and residential programs, and they will have shorter waiting lists but will be expensive.

Alex is going to be a challenge to place because of his relative intelligence and skill level, paired with a complete unwillingness to cooperate unless there's something in it which he wants.  I've seen kids on the spectrum doing well in integrated classes despite substantial communication and comprehension problems, because they are socially aware enough to want to work with others.  Alex has always gone his own way and he always will.  All we can do is hope that he eventually wants certain things (like independence) enough to make him willing to do the work.

Invitation to Apply for Funding

Last week, we received a letter inviting us to apply for Service Coordination's ASD Respite Funding.  I have applied for this funding for five years and never once been approved.  The funding is granted on a bell curve with families who need the most assistance being given the money.  Apparently I've fallen below the threshold every single time, even the the year when Dave was in treatment for cancer.

The last few years, I haven't bothered to apply.  (If two kids with autism and a husband taking unpaid leave and dealing with cancer aren't going to tip me over the "greatest need" point, then my regular life isn't going to do it.)  Every year, I still get the invitation to apply.

I have to wonder, why are they bothering?  It's an increase in paperwork for them to deal with and clearly I don't meet whatever criteria they're looking at, so why bother pushing people to apply when you know they won't qualify?

Then it hit me, the more people they have to turn down, the more pressure they can put on the government to increase funding.  The goal of this is to inflate the statistics.

Now, I believe there is a real need for an increase in funding across the board: for treatment, for respite and for support for individuals and families.  But I don't like being manipulated.  If they were honest and told us they wanted to increase the number of applications to show the true need in the community, I would be more willing to participate.  (It's still a long application, especially when I need to complete it twice.)

Of course, I'm also guessing at the purpose.  Maybe they have another reason why they're soliciting applications to turn down.  But either way, receiving that invitation feels like a tease.

Taking Credentials from Life

I recently submitted a proposal to do a workshop for the Romance Writers of America's annual conference.  The workshop is on the different ways which people express emotions non-verbally and is based on lists I created to help teach Alex and Nathan to read non-verbal expressions.

As part of the proposal, I explained that I created this workshop because I was the mother of two autistic boys and I created a tool to help them which ended up being useful in my writing.  I felt I needed to explain some credentials since I'm not a psychologist or a behavioural specialist.

I recently presented the same workshop at the Ottawa Romance Writers' Association and it went over well, so I don't think I'm misrepresenting my expertise.  But it feels strange to use something I created to help my boys to also help myself.

It's funny how easy it is to feel like a fraud.  I spent two years researching my list (and continue to research) but because I don't have a university-backed piece of paper, I feel as if I'm somehow being presumptuous.

Maybe it's just the lingering effects of having been sick and exhausted and dealing with sick and exhausted family members for the last two weeks.  Or maybe it's just a manifestation of our quick-to-judge society or my own insecurities.  Either way, I think I just need to grit my teeth and stop internally apologizing so I can move forward.

And Now Everyone's Sick

It's official: we're a plague house.

The kids were snuffly and feverish last night, so I was fairly certain we were all going to be staying home today.  (Having the buses cancelled made it that much more certain.)

So today is going to be a day of chicken soup, curling up on the couch under blankets and watching Netflix.  I surrender.  I'm not even going to try and be a productive mom today (although I do still have work to get done).  Today, I will embrace my outer parenting slacker.

And It Hits (The Housewife's Challenge)

Last week, my husband got knocked out for four days by a virus.  He spent most of that time asleep or wanting to go to sleep.  

Now it looks like it's my turn.  I feel completely drained and wiped out.

However, I suspect there will be a difference in how our illnesses go, one that I suspect is common in most households.  The one responsible for running the household and dealing with the children pushes themselves through the illness (usually the mom but I know a few dads who are in this category and their experiences match mine).

It's not a control thing and it's not a "the world will collapse if I'm not doing this" thing.  It's a simple recognition that if I take a sick day, a lot of stuff doesn't happen.  Stuff which I will then have to deal with when I recover.  Thus I push myself to try and keep things running as best I can.  Is it critical, can't be missed stuff?  No.  If it didn't happen, it would be inconvenient and difficult, but the world would go on, CAS wouldn't come after the kids and the Board of Health wouldn't condemn the house.

I find it a little patronizing when people push me to just let things go.  They assume a martyr complex or that I am somehow exaggerating.  This isn't me overthinking my own importance.  It's a simple recognition of the fact that it's just not possible for anyone to jump into a complex job (any job) for a few days and not miss things.  Running a household and managing a family is a complex job requiring coordination of multiple schedules and tasks. 

Maybe that's why I get frustrated.  To assume that anyone can walk in and do just as good a job as I do is to dismiss the level of skill and experience required to do what I do every day.  It assumes that my work isn't really that hard, falling more into the "trained monkey" category than "skilled executive".  Anyone who's done the parenting/household gig knows how difficult it is, with or without a paid job to manage on top of it.

So perhaps it's time to stop pretending it isn't a real challenge.

Or maybe it's just time to curl up with some soup.

Thoughts After Let's Talk Day

Last week was the Let's Talk Day for mental health.  The stated goal is to change the stigma around mental health issues so that people will be more comfortable asking for help and others will be more willing to accommodate.

I did a post about why I think it's difficult for people to accept and understand the difference between their own experience and the experiences of those with mental health issues.

This weekend, I was catching up on some PVRed shows and I caught a number of this year's Let's Talk commercials, the ones which show what the person is thinking and then having a change of heart when they learn there is an actual condition behind the other person's behaviour.  There were two getting the most air time: a pair of construction workers talking about a colleague with bipolar disorder and a pair of women in the office where one is asking the other for time off to deal with depression (or something similar, it's not specified).

Something about these commercials was bothering me this year and I think I've put my finger on it.  I think they would discourage people with issues from coming forward because they emphasize the greatest fear: that other people will think you are weak for not being able to cope.

There are at least four unsympathetic "thoughts" shown before the final understanding moment.  And those thoughts epitomize the reasons why people don't ask for help: other people will be resentful, it looks like asking for special treatment, no one will understand.

I would guess that these commercials were designed to influence the rest of the population, by encouraging them to change how they react.  I'm not sure if that's the best way to do so.  I probably would have preferred something where the conversation is overlaid with images of the person dealing with the challenges, so that it's clearer that the impressions are unfair.