Monday, 10 July 2017

First Few Days of Our Calgary Adventure

Now that I finally have my internet connection working, I can post about our Great Western Adventure.

We managed to stuff all of our gear, both kids and Icon into our car to get to the airport.  The shuttle driver was very courteous and helpful.  (And Alex was thrilled to get to ride a new type of bus.)  I have to say that the staff at the check-in counter was somewhat less helpful.  There were a lot of people checking in and while we got pulled out of line so that we could be helped directly, there were several points where it looked as if we'd been forgotten.  We ended up leaving our "please sit here and someone will be down to escort you through security" spot and just going through security on our own. 

Security was very good with Icon.  They made us have him go through the metal detector on his own but didn't ask us to strip off all of his gear.  Alex got selected for a random screening but he participated reasonably well.  We got to our gate about five minutes before boarding and introduced ourselves to the gate attendant.

We had the bulkhead seats on the plane.  Dave and Alex were on one side, with Icon under their feet.  Nathan and I were on the other side.  It was nice having the extra leg room, but because we didn't have a seat in front of us to store our bags, we had to put them in the overhead bin, which was a little inconvenient.

The flight went smoothly and we arrived on time, meeting my father at the airport (he was in Calgary already and leaving the next day).  The kids were getting tired and a little cranky but we managed to have a nice meal and get ourselves set up at the hotel.

For our first day, the only item on the agenda was the Stampede Parade.  We left in what we thought was very good time, but ran into some complications.  First, the train into the city was far more packed that we'd anticipated, sending Nathan into an anxiety meltdown.  He was howling that he wanted to go home.  Dave and I were straddling Icon, trying to keep anyone from stepping on him, so I was trying to hug Nathan and get him to calm down.

We had purchased bleacher seats in advance, which proved to be a very good idea.  We found our seats and, with a little shuffling, sat down just as the parade reached our area.  Alex quite enjoyed the whole thing, singing and dancing to the music and waving to the participants.  Icon sat quietly by the curb and seemed interested.  A few times, we got nervous because there were golf carts whizzing by to deliver water to the people in the parade.  Nathan was still upset when we sat down, but then he got interested, then he got bored and started to get upset again.  I think he had the hardest time.  We were lucky that our seats were in the shade, but had a challenge in that Alex drank all three litres of water that I'd brought and did it within the first half hour.

After the parade, we got some snacks and more water from a convenience store and sat down in a park to allow the crowds heading back on the train to disperse.  Nathan perked up after some water and chocolate and was much more cheerful.  It took awhile, but eventually we got ourselves a train and headed back to where we'd parked the car.  We spent the rest of the day having a quiet time and then headed out to dinner.

After dinner, I took Icon to visit my grandmother.  She has a lot of trouble remembering things now and thought I was her niece.  Our conversation was a little repetitive but she was delighted to see Icon (she's always loved dogs) and was happy to see me.

On Saturday, we went to Heritage Park, a historical village set in the 1890s to 1910s.  Alex was not in a mood to be cooperative.  He bolted several times and complained constantly about everything, including any random comments he overheard.  Nathan was also in a cranky mood.  Dave generously offered to supervise them playing in the park while I went to do some exploring and learning.  I got to visit the Indian settlement and learned about some of the native games and tools, as well as visit the Hudson's Bay Trading Post and see how the trading system worked.  After I got back, we rode a few rides on the historical midway and then headed back to the hotel for a quiet break.  Unfortunately, Alex continued with his complaining and Nathan's mood wasn't stable,

Saturday evening, we went to my cousin's house to celebrate the 1st birthday of his new son.  It was a good opportunity to see most of the Calgary relatives, but the boys were clearly having a difficult time.  We left early and headed back to the hotel.

Sunday we went to Banff amid lots of complaining.  At this point, I was feeling very discouraged and wondering if I had made a mistake about the whole trip.  Dave made a comment that he didn't feel Icon was helping at all and had made things more difficult (since we had to deal with his gear and food, etc.)  Personally, I think having Icon was helpful in that we could keep Alex tethered to him and he was keeping Dave calmer than usual, but it was still discouraging.

Nathan was interested in doing the trail ride along the Bow River, so we signed up and got ourselves some horses (Max for Nathan and Bowden for me).  Alex, Dave and Icon went to amuse themselves.  When we got back from the trail ride, Alex was done and Nathan was exhausted, so we headed back to Calgary. 

We have another few days here.  I want to spend a day at the Stampede and another at the Calgary Zoo.  I'm hoping that the boys end up enjoying at least some of it but it's been a pretty intense grind.  I'm still not completely recovered from my surgery and medical leave and I'm finding that I get tired very quickly and don't have the energy that I usually do. 

I'm glad that we came but I have to be honest and say it's also been a lot harder than I was anticipating.  Some of it is Alex's behaviour is more fragile and not in as good a place as last year, mostly due to the issues at school.  Some of it is my own lack of resources.  Dave has been making a real effort to be more supportive than on previous trips, which I appreciate.  Icon has been picking up on the anxiety and temper, making him more anxious.  And Nathan has surprised me with how much trouble he's having.  I guess this may be a sign that he's more like Dave in preferring to be at home.

Wednesday, 5 July 2017

People, Not Puzzles

A few days ago, I came across a series of articles talking about how a number of people in the autism community no longer like the puzzle pieces as a symbol for autism.  This honestly surprised me, as I wasn't aware of any negative connotations to the symbol.

To me, the collection of brightly coloured irregular shapes represents many things.  First, it reminds me of the difference in how I see the world and my son sees the world.  When I do a puzzle, I'm assembling an overall picture.  When he does a puzzle, he is assembling a series of connecting shapes.  I would have a lot of trouble with a puzzle like the ribbon above, but he would see it as perfectly normal.  So it makes me remember that how he sees the world is different, but no less valid, than how I do.

Second, it symbolizes the many things that need to come together in order to help people with autism.  Different people and therapies, times to push and times to accept, sensory enhancements and challenges, attitudes, explanations and tools.  No one group, practice or therapy has all the answers and everyone's puzzle will look different, but it is possible to put it all together.  Autism is a team challenge and requires not just a village, but an entire city of cooperation.  (I realize this touches on the "cure" issue, that offends some people as it implies people with autism need to be fixed, but disregarding the challenges that many people with autism have is offensive to me, more on that later.)

Third, I like the bright colours because it stands out, much as people with autism do.  But just as the jumble of colours might be initially offputting or confusing, as people become used to it, they can see the beauty and interesting parts.  Those who first see my children might be worried or not sure how to react, but give them some time together, and they'll see the wonderful people underneath the surprise.

Now, some of the objections are valid.  People complain that the puzzle (especially with the primary colours) is juvenile, either infantilizing adults with autism or ignoring them completely.  Others dislike the symbology of a puzzle with a missing piece, implying there is something missing or needing to be fixed.  Others feel that since autism is a spectrum, then the symbol should represent that (usually using a rainbow).

Then there are the objections that I have a problem with.  A lot of the objections center around Autism Speaks, which uses a puzzle piece as its symbol.  I dislike how Autism Speaks presents autism and their confrontational, melodramatic approach, but I also don't feel that one organization gets to co-opt the entire movement.  If we have a problem with Autism Speaks, then we need to deal with them, rather than trying to come up with a new symbol (which they would inevitably pick up anyway).

And finally, there is the anti-cure crowd, which is mostly made up of high-functioning people with autism who resent the implication that their way of seeing the world is any less valid than neurotypicals.  There's a valid issue there, but what bothers me is when they claim to speak for all people with autism.  Someone who was able to learn to communicate and who can function independently in society has a very different view than those who need intensive help to learn even the basic skills of interaction and function.  For that person to then judge the second (or the second's family) for using therapy and claiming that the therapy isn't necessary, that's offensive.  To me, this is rather like someone on crutches claiming to speak for all people on the handicap spectrum and saying that ramps aren't necessary because he or she doesn't need to personally use a wheelchair.

In the end, I feel that puzzle is still a good symbol for people with autism and the challenge.  Because, the most important aspect is that no piece is the same as any other, but that doesn't mean we can't all work together.

Tuesday, 4 July 2017

Our Canada Day

Despite being in the Nation's Capital, we stuck to our local Canada Day celebrations rather than braving the downtown Ottawa ones.  

Heavy rain in the morning kept us indoors for the first part of the day, but after lunch, it cleared up, so we joined my sisters and went to the Canada Day fair in Kanata.  We brought Icon and had him tethered to Alex, which actually worked fairly well.  We had to untether them so that Alex could go on rides, but that was pretty simple.

Nathan asked to go on the Gravitron, which surprised me because he'd gotten scared halfway through last year.  But I agreed and Alex wanted to go as well, so my sister joined us.  As the ride started to spin up, I could see Alex being very casual, with his feet propped up on the board as it slid up to the top.  Nathan, however, began to cry and get upset.  I held his hand and was shouting over the music that it was okay, that I was having fun.  I couldn't turn my head because I got too nauseous.  But after that first blip, he started to enjoy himself.

After we'd been there about an hour, Alex had a tantrum when I told him that we had to wait in line for the next ride.  He pushed Nathan, so I put him in a time out.  (Luckily we were near the edge and there was a chair beside one of the carny trailers.)  I sat him down and he proceeded to have a good twenty minutes of continued tantruming.  He kicked Icon, so I untethered them and moved Icon out of reach.  Then he bolted, giving me a good chase across half the fairground and through the mud.  I got him back and stayed close to him, but then he kept slapping at me or trying to stand up or twisting around to stick his feet on the trailer's steps.  Eventually we got our one minute of quiet cooperation and sitting still.  It was really hard for my father to not react to Alex, but he made a good effort.

After the tantrum, my sister took Nathan on more rides and Dad and I took Alex for a walk.  We ended up at McDonald's and Alex got an ice cream (since he'd done a BM in the toilet earlier in the day).  Then we went back to my parents' for supper and to chill until the fireworks.

We got ourselves set up on a little, out of the way hill, all decked out in our glow bracelets and necklaces (including Icon, who had a very fetching glow collar).  We watched the end of the Finger Eleven concert, with Alex singing along enthusiastically to the songs he recognized.  We had our snacks (cotton candy for Alex, popcorn for Nathan and mini donuts for the rest of us).  The fireworks were late but spectacular and worth the wait.  Then we took our tired boys home for the evening.

All in all, a good day.  Happy 150 Canada.  Hope I'm around for 200.