Welcome back! This week, we will continue to look into the topic of Cri du chat syndrome and one mother's journey of caring for her child with the rare genetic disorder (and all the fun that it implies). Last week we left off by recounting some of the advice that was given to her by professionals, boiling down to having her leave her son at a feeding clinic isolated by his family (save for whatever time she would be able to go see him, which in her case would be none because of her busy schedule), the ever popular option of institutionalizing him, and the one good idea: reaching out to other parents who are in similar situations. Now let’s see where this parenting adventure will take her next.
Notice how I seem to depict all out adventures either on a boat cruise or under the water? Never on any actual land mass. Except for that one time with the fair and travelling to Britain and Scotland, but they don’t count as they are an island surrounded by water.
On top of everything else that she has experienced thus far, there was yet another realization that became quite clear to her: Raising a child on the spectrum (not to mention one with an extremely rare genetic disorder) was a lot different from raising a normal child. This was made extremely apparent to the author, as she has both a child who has all of the above, and some who do not. The author has, as they say, lived experience. Much like I have lived experience of accidentally putting my hand to close to a candle for a couple of seconds, but long enough so that the hairs start to burn. Lived (painfully) experience.
Concerning the parenting of her other children, she has a number of sources she could draw on, most of which, from what I understand, without much if any help from institutions. Sources like: generations of parenting knowledge, her own childhood experiences, observed other families parent/child dynamics, and parenting advice from conversations, magazines, newspapers, fictional books/movies/T.V shows. In other words, society, much like all other aspects of our lives that it touches, taught her, in large part of in whole, of how to raise her normal children.
But how many television shows, movies and/or books do you know of that teaches parents how to raise a child that is on the spectrum? (or at least those that give positive advice on such matters). Do you know of any family with generations of knowledge on how to parent a child on the spectrum? Have you ever heard it discussed? Probably not, or rarely if so. Society, it seems to me, does not seem to know what to do with such a child even if it dropped from the sky and started to do a jig. Except, of course, for the parents who are themselves on the spectrum, from which they might be able to benefit from their own childhood experiences at least.
Childhood can teach us many things. How to raise our own kids, what bugs are safe to eat raw, why attacking a nest of red ants can hurt a lot, and most importantly, how to try and not get in trouble.
Will, that does it for this week's post. Next week will be the last post on this subject, and the last stop on this particular tour of the Autistic/Aspie Atoll. Please leave in an orderly line as we drop you off onto your own island. Also, do not forget any valuables/items you bought with you on the trip, otherwise we will keep all items in a lost and found box/sell them on the black market for top dollar. Whichever comes first (hurry, they go fast). Until next time, this continues to be, the Audacious Aspie.
Welcome back! This week, we will once again dive into unknown waters (mind the kraken), and explore the little-known island, called Cri du chat. A place that, not many, least certainly not me, has heard of before, but is akin in many ways to our own little cluster of islands that I like to call, the Autistic/Asperger Atoll (an island for each of us, lord knows we could use alone time sometimes). In fact, much like the island of Down syndrome the Cri du chat island is so close to our own island chain, that one might consider even consider it a part of the Atoll. But what is Cri du chat, despite a metaphorical island that I made up? Will, it is much more than just a fake island. Much more.
Doesn't all this talk about islands and atolls just want you to take a vaca to a real Island resort? Basking in the hot sun, being served hand and foot, holding on to dear life while trying to not be blown away by the blast from a nuclear bomb test...will, at least the first two.
Cri du chat syndrome is, according to SLATE, a rare genetic disorder that gives the person who has it with “multiple intensive disabilities” (SLATE, NOT MINE TO MOLD, paragraph 1). One of them being nonverbal Autism/Aspergers. This particular article of SLATE tells a rather sobering tale of a mother learning of the unique challenges posed, not by her son, but by the institutions who are supposed to care for people like her sons, and their families. Not gonna lie folks, it won’t be easy to make jokes with this one as opposed to the last one (which was all about our humorous side! Will, all about the myth that we don’t have a humours side but you get the idea).
So just what was it that the institutions suggested? Only the usual suggestions: leave him in a feeding clinic were a group of caregivers will put him in a room with a bunch of strangers and repeatedly encourage him to eat something over an extended period of time. Or, and I’m sure that this is one that we, or our parents at any rate, have been told at least once in our/their lives, that she have her son institutionalized (the world seems to think that we belong only in an institution. And they’re right. I’m in an institution after all. Okay okay, it’s a postsecondary education institution but it still counts as an institution).
Man, I wish my universities library was this fancy. I would never tire of walking around its seemingly endless levels than. Or until closing hour came and they chase me around the library until finally cornering me and catching me, after suffering some scratches and bite marks. (sigh), a man can dream.
But, her being the mother of the child, only had to imagine herself in her childs shoes in those situations, and know that it would be, will, a pretty poor choice to put it mildly. But there was one bit of advice that was suggested to them (by whom the author does not say): “seek out other parents of children with similar medical issues.” (SLATE, Not Mine to Mold, paragraph 4). A kind of community were a sense of belonging, tips on practically everything (examples given are going through the educational system and picking out wheelchairs), and commiserating over a shared struggle. Group healing, in other words.
Will, that does it for this week's post. Next week, we will continue our look into the article about Cri du chat, though probably not for too much longer, as there is so much sadness and depression in the world already, that if we really wanted to read about kids being mistreated by an uncaring system (an odd obsession I know but bear with me), we really only have to read the newspaper or listen to the radio. Hold on, I’ve just received news that it has always been like that. Will than, as an unlicensed and uneducated-in-the-ways-of-psychology psychologist, In recommend you read or listen to a happy story each and every day, or even go one better and get some physical exercise as often as you can.
On further reflection, you probably don't need me telling you that. But until then, this continues to be, the Audacious Aspie.
Welcome back! This week, we will continue to learn more about the misconception: do people on the spectrum get humour. We already know the answer (yes) but there are other factors of the myth that are important for us to learn as to why it came about, why is it still around and just how wrong is it really? Will, that is what we have been learning for the past two weeks now, and this week will be no different. Please welcome back to the stage to help explain the whole debacle, the BBC! (pre-recorded cheering)
Last we left off, we were talking about how last year was a big shock (to the BBC at least) of just how funny people on the spectrum can be, one way of which was having a special on an international streaming/film production/god-knows-what-else company. A lot of humour, in my opinion, is taking the mickey out of patterns of our daily lives, but how does someone with Autistic/Asperger’s view such patterns in our lives? Will, the creator of the aforementioned Netflix show Nanette, has her view on things.
Take this picture for example: is your life pattern one of a series of beautiful coloured glass steps leading ever upward towards success, or a nightmarish glass slide leading ever down towards a circle brightly lit by the ever-burning flames of the home of beelzebub? Could go either way really.
She herself “understands things a lot deeper than a lot of people” (Do autistic people ‘get’ jokes? Paragraph 14), and by “things”, she means feelings. But what is strange is that our good doctor Asperger is not only responsible (according to the article) for kick-starting the no-humour myth, but he is also known to believe that people on the spectrum lack both empathy and social understanding (wonder if he watched as many cartoons as his “little professors” have before coming up with these, um, “interesting” ideas).
However, not only did the no-humour belief have a huge upset last year, but so, it might seem, did the no empathy/social understanding myth. The article states that many of the people who watch Nanette seem to agree with her “analysis of feelings and emotions” (Do people autistic people ‘get’ jokes?), which kinda pokes a giant hole in the foundations of the myth doesn't it? Someone should really have it bulldozed as it’s a health hazard.
This guy's got the right idea. Or is it manure he’s shovelling over? Hard to tell the difference between the two.
Will, that does it for this week, and also (for now at least) my analysis of the myth: people with Autism/Asperger have no sense of humour. Next week we will be moving on to a different topic, as always, of which may (or may not) exclusively deal with Autism/Aspergers. But until next time, this continues to be, the Audacious Aspie.
“Approximately 15 per cent of British Columbians over 15 years old self-identify as having a disability. Our goal is to prevent and remove barriers so everyone can participate and feel included. This way, B.C. will be a better place to live, work and visit for everyone.” (Province of British Columbia, 2018)
According to the Province of BC website, we have committed ourselves to become a truly inclusive province by 2024 by implementing the following strategies:
While these action items may support a stride towards an inclusive province over the next 6 years, I would ask, how will the Province of BC be held accountable to its commitments? What should people with disabilities do if these values of inclusivity are not upheld? I can say with confidence that, despite the good intentions of the Province, individuals with disabilities are often rendered voiceless in instances of discrimination. I would suggest that this is largely due to the arduous process involved in escalating a complaint to the BC Human Rights Tribunal.
The Province of Ontario has established an Accessibility for Ontarians with Disabilities Act. This Act provides Ontarians provides citizens living with disabilities with the option to pursue legal action against their discriminators other than going through a Tribunal process.
I am hopeful that the British Columbia Accessibility Act drafted in May 2018 will give British Columbians the same option. It is difficult to comment on the current content of this Act given that there has been very little progress made. However, I anticipate that its intention is to offer an additional avenue of recourse to citizens living with disabilities who have experienced discrimination. Such an Act may also provide the citizens of BC a measure of autonomy in their pursuit for equity and an opportunity to address their complaint via litigation. Hopefully, this would alleviate the pressure related to the victim’s responsibility to prove and present their case to Tribunal decision makers and make way for case law to preside based on individual circumstances.
The Province acknowledges that there is a significant number of British Columbians living with disabilities and that we should be working towards being a truly inclusive province. Therefore, I hope we continue to find ways support equity and diversity and hold those who do not align with this goal accountable.