Hello and welcome to my blog “Living Outside the Normative”. This blog is a series of postings about the experience of being different, of living within our world, or our Western Canadian society, when one’s ways of thinking, perceiving, reacting, and experiencing are different than those of the masses of people existing underneath that large bump in the human population curve. It is not an easy place to be, outside of that normative bump, but it can be an interesting one. I have been permitted to a certain extent to see what happens out there, on the edges, through the blessing of my son. The official terminology for my son’s on the edge living is a diagnosis of Asperger’s from when he was 7 and which now, in North America, has been grandfathered in to a diagnosis of Autism Spectrum Disorder. My son is now 18, at the time of me starting on this blog. His differences, of course, did not start with his official diagnosis, they started at his birth.

I have been considering starting a blog such as this for quite some time, with the purpose of trying to share what life really is like when one is having to live outside of the norm. There is so much to share. It can be a truly amazing world, but, it is also a bit more challenging than existing underneath that large bump in the normative curve.

There is so much, unfortunately, that our society, and the people under that bump, I think unwittingly, do that makes existence outside of that bump more difficult, and that, really, deprives not only those existing outside of that bump of true participation and a sense of value but also the rest of our community of the benefits that can come with having little bits of differences sprinkled about. I truly believe that for the most part people do not go around trying to think of ways to make life more difficult, or to disadvantage others, that this just perhaps happens somewhat accidentally, and is perpetuated through ignorance, but it still happens. Perhaps it wouldn’t so much if people realized what it’s like on the other side, how life is made more difficult when it doesn’t have to be. And perhaps if some of the different amazing perspectives, those blessings I mentioned above, were shared, then people wouldn’t fear so much the differences, would be able to come to value them instead, and then, maybe, true inclusiveness, or even better yet, celebration, of all of our members of community, would grow, and that would become the norm.

The purpose of this blog, therefore, is to share, the joys and the challenges of living outside of the normative, in the hopes that this sharing might lead, little by little, to a more tolerant, more equitable, world, where we, referring to humanity as a whole, can take advantage of the skills of all of our population, not just those who are easiest to understand by the greatest number of the population. There will be blogs which will frustrate the reader, and which may be somewhat discouraging. There will also be blogs which are incredibly uplifting. And there will be blogs which open up a whole new wonderful perspective on the world, allowing the reader to also get a glimpse of the world from a different place, a glimpse that is encouraging and uplifting, for this positive, uplifting, view of the world, presented fresh and new like what one gets from a child who is first experiencing their world, is also one of the greatest benefits from being with someone outside of the normative. So read on, enjoy, cry, comment please, for this is a conversation, a conversation about life, challenges, and possibilities, and I welcome your involvement.

Tuesday, 9 January 2018

An Open Door



Yesterday was a happy day.  A door opened, instead of closed.  What a wonderful thing.

Enrique (my son) and I used to go out to the mountains frequently.  We live in Calgary and the mountains are only a short hour to hour and a half drive away.  We both enjoy the space and the freshness, and the movement that we can accomplish through going hiking or skiing. Getting away from the city and into nature was essential for both of our psychological well being.

Mountain visits were also an important part of Enrique’s schooling.  We home educate and he learns best through hands on exposure to the concepts we are studying.  We did a lot of our science studies through in situ experiences, many of which took place in our mountains.  When he was old enough (14 or so) he signed up for a citizen science program,  RANA,   which monitors amphibian health in the Kananaskis, and which he attended with a support person. 

When Enrique’s sleep disorder hit getting out to the mountains became problematic. With this sleep disorder Enrique is awake for somewhere between 1 or 2 and 8 or 9 hours a day.  Which end of the awake time scale he will be at for any given day is unpredictable.  He will switch from the more awake side to the less awake side with no notice, and suddenly.  His time does seem to be skewed more towards the heavier needs end than the lighter needs end.  Hence with the development of this disorder just getting out to the mountains became difficult.  When Enrique is in what we term a heavy sleep cycle, where he might be awake for 2 hours in a 24 hour period, he is often not possible to even wake from when he is sleeping, making it not possible to get him into a car and thus out to the mountains.  Further, what would be the point?  Even if I was to physically carry him out of bed and load him into the car in his pyjamas, he would not be awake when we arrive at our destination, and I certainly could not just leave him in the car.  In those times when he can be woken, or if we leave when he is awake, keeping him awake when his body thinks he should be asleep is non-effectual.  If one manages to wake him, or keep him awake after he wakes on his own to attend to bodily needs, for that “awake” time Enrique is non-functional.  He is not capable of speaking or walking.  He falls out of chairs.  He can’t use cutlery, he actually can’t always even eat independently.  And he eventually, which time frame is rather short, meaning a half hour to maybe an hour, or maybe even minutes, will fall asleep.  Problematically if one is engaged in an excursion, whether this is walking to the grocery store or walking in the woods, engagement in physical activity does not prevent a transfer into unconsciousness.  When this transfer does happen Enrique’s muscles freeze and he will become unconscious.  This will happen while he is standing.  Or while pouring a drink.  Or while having been in the middle of a conversation.  Or… while walking.  This one is interesting because he often will continue walking, even though he is unconscious.   As he is no longer registering his environment he requires somebody to be close to him to protect him, left to his own devices he would walk off a drop or into objects, including, for instance, traffic, if such were present in his path.

After a couple of years’ hiatus from our mountain excursions, where we would plan and try, but more often than not have to cancel, visits out, I became determined last summer to find a way.  I was getting out regularly, but Enrique, not so much.  And he wanted to.  So, we started “camping” again.  For Enrique, every hour, every minute, counts.  A day trip with even a short hike, even one up Johnston Canyon, a 45 minute walk up on boardwalks through a canyon to a small waterfall at the end, an excursion we used to do regularly as a pre-cursor to a picnic in Banff, well, this was not possible after an hour spent eating breakfast and showering, and then an hour and a half drive.  Before even arriving we would have used up 2 and a half hours of potentially his 4 hours of awake time, and that was without the “hike”.  If he was sleepy we didn’t dare go on the “hike”, we could not risk him falling asleep out in the middle of the woods, how would I get him back? When he falls asleep during an activity being able to wake him at all is questionable, I have had the experience of him being asleep while standing and me working on waking him for in excess of 10 minutes, and, if/once he does wake up, he is unable to walk independently.  He’s 5’10” and 140 lbs, and beyond my ability to carry.  Actual hikes, such as to the Plain of Six Glaciers or the Lake Agnes teahouse, were thus completely out of the question for even consideration, in fact, just getting to Lake Louise, which is 45 minutes beyond Banff, was typically beyond Enrique’s reach.

So, I gave some thought as to how we could reduce the time requirements.  First, eliminate the eating at home.  I could prepare something before hand for consumption in the vehicle.  That was easy, but it wouldn’t be enough.  Well, what if I could cut out the driving to get out there?  That would gain us both time and flexibility, since we could just go do whatever activity we were going to attempt to do when Enrique’s “awake window” opened up (did I mention that the time periods when he is awake are also unpredictable?  For example, he’ll go for several days where he might be awake and functional from, say, 2:00 p.m. to 7:00 p.m., and then, suddenly, without warning, he’ll just start being awake and functional from 5:00 a.m. to 11:00 a.m.  If you try to move the “awake period” yourself, or keep it at where it is when it decides to move, all that happen is Enrique becomes non-functional at those times.  It’s crazy).  So we started “camping”.  In the days before we were going to head out we would ensure there were no other “activities” planned, such as hair appointments, medical appointments, movies, watching sports games on t.v., etc, which might infringe upon Enrique’s space for sleeping.  Then, the day before we were to head out I would get everything prepared for 2 days of camping.  The day of departure I would get up at 5:00 or so in the morning and pack everything into the car, in preparation for when Enrique might get up.  Regardless of his cycle Enrique often gets up somewhere between 6:00 a.m. and 8:00 a.m. to attend to bodily functions.  I would get the car packed and myself ready to go so that if this were to happen then we could take advantage of Enrique being physically moving about to load him into the car and for us to take off. If Enrique did not wake during this time I would attempt to wake him at 11:00 or so, something in which I would have a high chance of success if he had not woken on his own earlier.  Then we would leave for our mountain destination.  Our mountain destination (campground) would be one of the ones further away, since the closer campgrounds require reservations and hence are booked months in advance.  I wouldn’t do one with a reservation anyways, cancellation incurs fees and even with the strategy being described we were not guaranteed to make it out, especially for camping Enrique needed to be in a sleep cycle which was presenting at least 4 hours of awake time per day, and we also needed acceptable weather.  We also needed a destination where activities (hiking) were very closely located to where we would be, and where there would be a variety of lengths available, to accommodate Enrique’s level of awakeness and awake time available.  So our destination would typically be somewhere between  a 2 and 4 hour drive away. 

We managed to get out 3 times this past summer.  Typically Enrique managed to stay awake for the first part of the drive, but would be asleep by the time we arrived at the campground.  We tent camp, I sleep on a cot inside my tent.  When we arrived at the campground, with Enrique asleep, I would find us a site, take out the sleeping cot, and drag Enrique from the car onto the cot.  Although Enrique does go unconscious in the car he does not get a restful sleep.  He also doesn’t sleep as well when in a tent as when he is in a bed.  For most of us a not so good sleep is a nuisance, maybe resulting in some feeling of tiredness, maybe some grumpiness eventually, for Enrique a less restful than usual sleep means he won’t wake, or if he does he won’t be functional.  Since this would disallow participation in the activity we were there to do, less than restful sleeps were to be avoided as much as possible.  Hence the transfer from the car to the cot, where, although it’s still not an ideal sleep, it’s a better sleep than in the car.  So.  I manage to transfer Enrique from the car to the cot.  Twice I managed to wake him enough for him to stumble over to the cot, once I dragged him semi-conscious.  Then I cover him up, set up the campsite, and settle in with my book to see if he wakes on his own in time for dinner.  I would have chosen our campsite to be close to the washrooms and particularly water so that I could make use of both of these while Enrique slept on the cot as at times we were at the campsite by noon and it would be possible, and in fact likely, for him to sleep right through until I woke him for dinner, which would be around 7:00 since we would be trying to maximise sleep so as to maximise the likelihood of him being able to go on a hike the next day.  And of course it would be completely inappropriate to leave Enrique lying on a cot in the middle of the woods, even if it is in a campground, on his own. 

At around 6:00 or 7:00 in the evening I would start getting things ready for dinner, and attempt to wake Enrique.  One of our times out I had to try multiple times, eventually, at around 8:00, I was able to wake him, he stumbled through eating, and then went to bed in his tent.  One time he woke on his own at 5:00 and we were able to get a nice walk around the campsite in as well as dinner.  The other time he woke fairly easily when I woke him up at 7:00 or so, we had a nice dinner, and we went for a nice evening walk before he headed to bed.  That was really nice. 

I would then clean up and go to bed early myself, so that if Enrique happened to wake early in the morning, and feel awake, we could take advantage of this awakeness to engage in whatever hike we felt Enrique would be able to manage.  It was important that if Enrique woke early in the morning and felt awake we took advantage of this since there was absolutely no guarantee that he would be awake enough in the afternoon to engage in a hike, or actually, that he would even wake anytime before what would be considered evening.  Of course, one advantage to our northerly location is that daylight lasts until 9:00 or 10:00 in the summer, which means that if Enrique were to wake and be functional at 6:00 p.m., we could still go on a short hike, if I had food prepared in advance so we didn’t need to use up any awake time on food preparation.  As you can tell, in the interests of getting out on a hike, my sleep habits were completely irrelevant.  I don’t become non-functional when we mess with my sleep cycles, so they get messed with.  And, we certainly didn’t have the luxury of saying we’ll just go as it comes, if we were to spend even a half hour on food preparation in there, after Enrique were to wake, then that would quite conceivably jeopardize the entire excursion.  So, in the interests of being able to actually do the activity we were there to do, everything had to be ready to go.  In the hope, not the guarantee, that there would be the opportunity to put that preparation to use and actually engage in the activity.

I don’t think I have mentioned, with regards to the eating, this is a huge issue with Enrique.  He has a high metabolism, eating is a physically difficult task for him, and he doesn’t receive hunger feedback.  Which means, he doesn’t like to eat, the experience of eating is for him similar to the experience of going and doing a workout that one doesn’t enjoy, and he needs lots of calories to stay alive.  So he, and I, have to explicitly keep track of how often he has eaten and how much and he has to physically task himself to eat, much as somebody prone to weight gain has to mentally task themselves to exercise, to ensure he doesn’t again end up in the hospital for extreme low weight.  At least he doesn’t have any food allergies.

So there we are, we have all gone to bed.  The next day I would typically wake fairly early, and, if I woke on my own and not because Enrique had woken and then woken me up, I would get ready for the day, getting dressed, preparing breakfast, cleaning up, and settling in once again with my book (do you see why nice weather is a requirement?  I’m spending a lot of time sitting around.  Lol, not to mention the several hours Enrique would have spent on the cot outside the previous day.).  This “me on my own” only happened once on our 3 excursions last summer.  The other two times Enrique was up first, one time before dawn, which was at something like 5:30 a.m., the other time somewhat after dawn.  Although it was a bit of a stretch for me to get up and be anything approaching sociable at that time of the morning, after having to put in so much work to get out there, especially the time Enrique was up at 5:00 whispering at my tent flap that he was awake, those days ended up working out fairly well.  I had never before been the absolute first person on a trail, and it was rather interesting to be returning to the campsite at 9:00 a.m.  Actually, I have to say that that very early day was fantastic.  The morning air was brisk and clean and it was wonderful just to be able to be out on the trail again.  Enrique was absolutely thrilled to be out in the mountains again, his step had a noticeable jump to it.  He was heading off ahead of me, happily breaking through all the spider webs which had been built across the trail.  We had the lake, which was the end point of the trail, all to ourselves and the early morning creatures.  Enrique felt a little less useless, and I was thrilled to see him happy. 

The other time we got out it was a bit later when we returned – I think around noon.  We had a much later start, I think around 8:00 or so, and we weren’t able to engage in the hoped for excursion, which was admittedly quite ambitious, it was a three or four hour “real” hike, but we did a replacement to the Icefields, where we hiked a bit around on the rocks, and actually, it turned out to be one of my absolute favourite experiences in recent times in the mountains.  Thinking back now, I will need to say it was awesome.  See, sometimes flexibility has some definite bonuses!  We had a bit of a drive back, but Enrique didn’t need to be awake for that, so that was fine. 

And then the other time we didn’t make it out from the campground.  But he did wake for a little bit, and so we managed a walk around the lake at the campground.  This would be one of the reasons we have to be particular about where we go.  There is always a fairly high probability that we won’t be able to engage in the hoped for excursion, to avoid too much disappointment it is important to have several backups of varying levels.  For this summer, we got out three times, and on two of those times we got to get out on hikes/excursions long enough to be considered something more than a casual neighbourhood walk, so this was, for us, a very successful summer.

After our return from hiking we would get ready to go home.  On the early morning hike day, Enrique quickly had some sandwiches and then helped me pack up.  We have engaged in tent camping since Enrique was six and he is quite capable at setting up and taking down, when he is awake.  The Icefields time he was unconscious in the car by the time we got back to the campground and I was unable to wake him to functionality, so I had a lunch for myself, made a couple of sandwiches for Enrique in case he were to wake up, packed up the site, and we headed out.  The other time Enrique worked on staying awake, then ended up on the cot while I finished up packing up, then I piled him into the car and we headed home.  All three times after getting home he had a quick easy bit to eat and then headed to bed, and then spent the next couple of days recovering. 

So, you may have noticed I said we booked two nights, and yet, we only spent one night there.  Did I misspeak?  Nope.  We needed that second night so that either we could go for a hike when Enrique was awake, or, he could sleep until he could be perhaps at least quasi-functional when he woke.  So we pay for two nights, and stay for one night and potentially most of the next day.  The day of the 5:30 a.m. hike we were out by 11:00, the others, no, we made use of that second “night”. 

So.  That was the process we developed for getting out to the mountains, and nature, in the summer time.  A bit of an effort, but at least it made it possible!  Unfortunately, this is not workable in the winter time, which is also, of course, when one tends to suffer most from cabin fever.  Winter also has an added challenge – this northerly location results in seriously limited daylight hours.  Right now for instance it gets light around 8:00 a.m., and dark by 4:30 p.m.  If Enrique’s getting up at 5:00 p.m., well, um, that’s outside of daylight hours.  And we have tried to have him get up earlier, this doesn’t work.  He has been getting up at around 6:30 a.m. to have something to drink (and eat), but he is very tired and can not remain awake for more than an hour, so just getting to the mountains, let alone engaging in a walk or a snowshoe, is turning out to be, well, impossible.  We have managed one planned for excursion, and cancelled three hoped for excursions, since the middle of December.  For those cancellations we couldn’t even realize the lowest activity level options, these being simply to get out to Banff and go to the hot springs.  I don’t know about Enrique, but I was starting to get rather depressed about this.  And then….



Ha ha, I was looking at options for the Kananaskis and came across mention of William Watson Lodge.  In my investigation of toilet options close to or at the trailhead for the snowshoeing trail I was hoping to take Enrique on I visited the William Watson Lodge website and discovered….

William Watson Lodge  is a collection of accessible cabins and campsites.  The purpose of William Watson Lodge is to provide accessibility to nature for people with disabilities.  And they are open year round.  Wow.  Really?  That’s amazing.  In a moment of lack of restraint my mind engaged in imagination of what that could potentially mean for Enrique.  I don’t typically allow myself to engage in the luxury of imagining what could be since it tends to lean towards being depressing, but, sometimes, I do, because that sort of imagining also can lead to change or developing work arounds, or motivation, but, well, one does have to be in a certain frame of mind, and rested, to be able to keep focused towards the positive vs the negative.  At this particular point in time I was feeling optimistic, probably looking forward to getting out myself, and I was determined that Enrique was going to be able to get out sometime, surely even if I just kept planning often enough at least one time would work out….  And then, well, here’s this place with cabins, which would mean a bed, right out where we would like to go, and the summertime camping worked, so maybe maybe maybe… 

So when I went out the next day, on my own, as Enrique was unable to get up, I stopped in at the Lodge.  It was a weekend, but I was still able to have a discussion with the person on duty, and wow, it looked as though Enrique would qualify to make use of their cabins.  And they are affordable prices!  Because of course I could go stay in a hotel in Banff or Canmore, ha ha, at, like, $200/night minimum since as a result of the excessive movement Enrique experiences while “sleeping” he requires his own room, and of course we would need to book at least two nights, for the same reasons we need to do so for camping, this makes for a minimum $400 charge in accommodation, which makes for a rather expensive 2 hour snowshoe, the maximum length we dare go on.  But William Watson Lodge, wow, they are $30 for a cabin, and they are right there, which means the likelihood of Enrique being able to get out is the highest it will be anywhere.  And if he can’t get out on a trail, even if he’s only awake for 2 hours, at least he can spend those two hours outside, on nice paved walks that I can guide him down if his walking skills are compromised, out in the mountains, a break from the city…. I think I’m going to start to cry just thinking about it now. 

So there’s my door opening.  I phoned in yesterday, Monday, to make reservations, and they even had availability for later this month.  It’s still winter, maybe Enrique will get to try snowshoeing.  At the very least he’ll be able to get back and see some more winter in the mountains.  That one time we made it out this year so far, to Lake Louise, he was so happy.  He couldn’t stop smiling.  This open door has made my day, maybe even my week.  It’ll make my week when we get out.  So many doors close when you aren’t typical.  It is so wonderful to have one open up.  Thank-you to the people who have opened this one – to those who had the insight to set this up and to those whose contributions, financially and in work, continue to make it possible.  This makes such a difference.  Thank-you.



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