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.

Friday, 12 January 2018

Another day kiboshed







Today we are having yet another kiboshed day.  We had great plans….  get Enrique up at 1:00, go to our favourite noodle restaurant for a late noodle lunch, head off to Enrique’s hair appointment, have him eat his snack meal on the drive between his hair appointment and his support person’s place, deliver him to his support person’s place for their activity in the late afternoon, dinner at 6:00 and then bed for Enrique.  Sound simple?  Not.


First, there was the organizing of this series of events, all carefully planned to maximise time expenditure, and then adjusted, as usual, last minute to attempt to accommodate how Enrique’s awakeness was actually presenting.  Thankfully his support person is incredibly flexible and tries as much as he is able to accommodate our frequent last minute changes.  But even with that, today was not happening as hoped for because, well, we have a combination of sleep disorder and ASD coming into play here…

First, waking Enrique at 1:00.  Nope, not happening.  Even though he went to bed earlier than usual last night (7:30 p.m.) and didn’t spend any more time than necessary to eat when he woke to eat at 7:30, returning to bed, and sleep, by 8:00 a.m.  I tried and tried to wake him at 1:00, using all the methods at my disposal, including water, ice, blanket removal, you name it, but after 20 minutes still no success.  So I went off to do laundry for 5 minutes, sometimes he will wake on a return visit.  Of course, this delay in waking was jeopardizing the noodle lunch even if I were eventually successful…

Returning at 1:25….  ice cold water, tickling feet…. I was successful at getting some response after about 5 minutes.  Enrique was partially cognizant.  There was no way he’d be able to get in and out of the shower in less than 10 minutes though, so lunch was out.  And, well, typically if I have to go to this much effort to wake him he’s not functional anyways, so there wouldn’t have been much point in going for lunch.  I communicated to him that we would have to miss lunch if he didn’t wake up, but reassured him that we could do it another time.  He did compute what I was saying at the time, after several repetitions, but I doubt he’ll remember it later.  In an incredibly sleepy way he eventually managed to ask when we would be able to do that?, referring to going for lunch.  Because, you see, we’ve been trying to get in a lunch for over two weeks now, but he simply hasn’t been awake long enough over a lunch period (11:00 a.m. to 3:00 p.m.) in that time.  He had been appearing, over the last couple of days, to be waking up a bit, so we were both excited about finally being able to go for lunch…. Alas, it was not to be, again.  But I told him tomorrow, maybe, we could try for dinner there.  He was seeming to be easier to wake in the evenings….  He nodded drowsily and collapsed into unconsciousness.

I went upstairs to do some dinner preparation, and consider options.  If we were to make it to his hair appointment I would need to wake him in 30 minutes.  Given how lethargic he was I was feeling he needed a bit more than 30 minutes sleep if he were going to have a chance of participating in activities with his support person.  But.  His hair was getting really long.  And hair washing is somewhat of a challenge for him.  And he has thick hair.  So really long hair is not a good thing for him to have.  I had been trying to get him in for a hair appointment for, again, about 2 or 3 weeks, but, well, he’s been basically asleep for about 6 weeks now, and, there are all the ASD things that kick in with his haircuts, such as being somewhat picky about who does his hair, and it also takes some skill to cut the hair of someone who is asleep, which is frequently how Enrique is during his hair appointments, and people who don’t know you give you such strange looks when the client falls asleep.  So we like to go to the same hairdresser.  But she is a half hour drive away.  Which means that, like many things, getting Enrique in for a haircut is a major undertaking requiring substantial planning.  I wouldn’t normally have scheduled a hair appointment on the same day as anything else except when I went to schedule this one, noting that Enrique was starting to be awake in periods where the hairdresser has open hours, I discovered the hairdresser is going on holidays starting tomorrow, so I scheduled the appointment for today, the same day as his scheduled time with his support person, and was hoping….

But it was not to be.  Haircut vs support person therapeutic activity, aargh!  I decided the therapeutic activity.  And called the hairstylist’s place and told them we couldn’t make it.  I hate cancelling last minute, it’s so rude.    And, now Enrique’s going to have to go at least three weeks without a hair cut.  He’ll look even more different than he usually does, and people do stare so….



So that’s where we are.  Another day in the unpredictable life of a person with hypersomnia and ASD.  Fingers crossed he makes it to his support person’s place for his activity.  I should stand a better chance of being able to wake him than what I did earlier this afternoon, he seems to be more “wakeable” in the later afternoons than earlier afternoons recently, although that is not at all predictive of future behaviour, even for today.  But if I do manage to wake him, he’ll have had 2 more hours sleep than he would have had we gone with the hair appointment.  So maybe…..


This is why discovering places like William Watson Lodge make me cry…. they increase our chances of being able to actually do something…



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