Moving Forward

Jeff’s Marathon Journey – August Update

Hi all – I’m back with a bit of an update for August. Everything is going well with training. We are a short ten weeks away from the NYC Marathon, and the program I’m following is really starting to pick up steam. I completed my second half marathon of the summer this past Sunday at the Edmonton Marathon event. I have been training hard the past few months, and was looking forward to this run in particular to see if the hard work would pay off in improvements to my time. I had set a goal to finish a half marathon in under two hours before I run the full marathon in New York, and Edmonton was my second-to-last chance in doing so – I have one more half marathon coming up in Fort McMurray on September 18th. I didn’t quite make the two hour threshold in Edmonton, with a time of 2:03:01, so I’ll have to wait until Fort McMurray in a month to try and realize that goal by trimming those last 3 minutes. All in all, 2:03 is a great improvement from my previous best of 2:11+ from last year, so I’m very pleased with the improvements. Being exactly at the halfway point of my training program, I’m happy to report that I have made it this far without any major or nagging injuries (with the exception of a black toenail that I think I’ll eventually lose… but I think that is bothering Yeunsuk much more than me at this point…).

As I write this, it’s Ben’s 4th birthday. As is normal with all parents, I was reflecting this morning on how quickly the past four years have gone. I was also thinking about all the ups and downs we’ve had, and all the things that Ben has learned, as well as forgotten or stopped doing – thankfully, in some cases. In my last update, I wrote about how Ben was on a bit of a hot streak with sleeping through the nights. I think I made mention that we rarely talk about it when he gets on those streaks for fear of jinxing it. As luck would have it, here we are a month later and he’s going through a bit of a rough patch again. Although far from the worst of periods, he is certainly not sleeping as soundly as

he was a few weeks ago. Right now he’s going through one of those ‘not terrible, but far from good’ periods where we never know from night to night how he will sleep, and trade good days for bad. Just last night he woke up at 3:30am and stayed awake until I was leaving for work at 6:30am. This screws up Yeunsuk’s day much more than mine, as she has to get Jessie to preschool, which is impossible unless she wakes Ben back up at 8:00am. And with this not being an option… well, you can see where I’m going with this. As is the norm, Yeunsuk is forced to bear the brunt of the impact that comes with Ben’s symptoms. I certainly feel like I could do more at times, and am perpetually grateful for all that she does. I’m far from what most would consider a religious man, but I remember reading something that stuck with me way back when were first dealing with Ben’s diagnosis – something along the lines of God gifting his most special angels to parents who can best serve them. I certainly feel that there must have been some sort of intelligent decision making at play when I see Yeunsuk playing with and teaching Ben. On a side (and unrelated) note, I just remembered another quote that stuck with me for the past four years: even God has autistic tendencies – that’s why the planets spin. I giggle when I think about how much excited flapping Ben would do if he could see the planets spin from a creator’s point of view.

We bit the bullet a couple of weeks ago when he entered this current rough patch of interrupted sleep and secured ourselves some melatonin from the local pharmacy in syrup form (Ben won’t swallow the pills). Our grand idea is that if he starts waking up earlier than 3:00am, we’ll give him some and it will hopefully help him back to sleep sooner than he would normally, within 30-60 minutes, as opposed to his usual 3-5 hours of interruption. The jury is still out on how this will work; we’ve had two chances to try it so far, and the first time he was back to sleep within 30 minutes of taking the melatonin, whereas the second time he woke up much more stimmy and didn’t go back to sleep for 3 hours. We will see what happens in the weeks to come – Stay tuned!

As for the fundraising – currently, I’m pleased to write that we’ve raised $2337 for the Fort McMurray Autism Support Group so far! THANK YOU to all that have donated, I am very grateful. If you would still like to donate, please click the link below.

Until next time, take care all!

Jeff

Getting Ready for Back to School

We Want to Hear From You!

There is an odd irony to life as a disabled person. I speak, of course, to my personal experience as an autistic, but undoubtedly the same absurd social factors and prejudices are at play in the lives of others, those with physical and mental conditions of every description. There is an oft-tragic lack of imagination within our default understanding of disability, where ability and disability are seen as mutually exclusive. I have experienced this myself many times – sometimes underestimated and infantilized despite my accomplishments, despite my skills and talents, sometimes met with a lack of sympathy. But more than that, there has also been a rigid refusal to accommodate with those same accomplishments, with those same skills and talents now serving as damning evidence against my case for aid and assistance.

I have been struck by the absurdity of the situation most painfully when applying to graduate school. When it comes to the pertinent, awkward issue, one has two options: either remain silent and accept the risk posed by unexplained irregularities in one’s scholastic history, or disclose and accept the risks posed by prejudgement, prejudice, and misunderstanding. The second option is perhaps the more perverse of the two, as it places one in the paradoxical position of arguing for admittance both out of competence and incompetence.

The two arguments must be carefully balanced, and checked and rechecked for any flaw, any discrepancy, any misplaced or misworded clause in one case line that might fatally destabilize the other. It is much like trying to build a suspension bridge out of toothpicks, dental floss, and cheap chewing gum. After all, if I am too competent, too well-adjusted, too well-spoken, am I really so disabled as to require special consideration? On the other hand, if I am too delicate, too unstable, too vulnerable to the vagaries of my mental condition, how could I possibly be prepared to take on the stress and responsibility of such a program? Would it not be better, kinder, that I were not offered admission at all?

I have long maintained a public face of extreme, extravagant competence. I have taken pains to speak ever eloquently, to pepper my conversation with charming anecdotes, clever witticisms, and warm compliments. I have cultivated the appearance of inexhaustible energy, imagination, and compassion. I have carefully, deliberately hidden signs of stress, of fracturing. While the majority of my social circle know of my diagnosis, they are generally unaware of the constant low-level overstimulation and anxiety, the taxing strain of an extreme introvert struggling to stay socially “on”. My private struggles remain private. My worst meltdowns and implosions stay firmly behind closed doors. The fact that I largely pass as neurotypical means that any error in my disguise might be immediately and severely punished. I cannot necessarily rely on widespread sympathy. Insofar as I wish to be seen as capable, I cannot let my deepest flaws, my humanity, show.

The idea that ability and disability cannot coexist is perhaps even harder on those who cannot pass as non-autistic. Many of the services available to disabled adults are only available insofar as one is “incapable” of work. This leaves those who theoretically have the skills to work, but who struggle to find employment or deal with the social requirements of the workplace, with no support to find jobs or succeed on the job. At the same time, it leaves those who require day-to-day support with no opportunity to exercise the skills they have out in the community. It is senseless to assume that because one can work one needs no support, or to assume that those on support have nothing to offer, no part to play in broader society, that their place is out of sight, out of mind, pitied and otherwise unacknowledged. Certainly, there are those who indeed cannot participate in such a way, but this is not the case for the majority of people labeled with autism.

The solution to these issues is unclear, but perhaps a decent place to start is to broaden our understanding of what people with autism are capable of and to resist the temptation of oversimplification. Perhaps, as well, we must question how support programs are structured, and ask whether or not they incentivise the full inclusion of autistic individuals.