A Few Bits of Gratitude

I started off this week feeling so grateful that Tony recovered enough from a recent viral illness to go Trick or Treating this Halloween. He hasn’t been since he was six and hasn’t really expressed any interest in ever going again. Generally, he doesn’t like costumes, and for candies, really only skittles and dum dums hold any appeal for him. However, I decided I would like to use this as an opportunity to help him build tolerance of crowds (especially groups of other children) since our neighborhood is an area of the community he already has a high degree of comfort in. Since he doesn’t really feel motivated by most of what is handed out, I had to sell it to him that it would make his sister really happy if he gave her all of the candies he didn’t want.

I am grateful he liked that idea, which became his motivation with putting up with everything else that went with it: the people, the noises, the decorations, the communication expectations. And I am so grateful that he has a loving sister, who on her own, without being asked, looked for skittles while she was out Trick or Treating with her boyfriend so that she could give them to her brother…so they did a swap and both of them ended up with more of what they wanted than they otherwise would have had.

I wasn’t sure what we were going to encounter from our neighbors because he is usually the only kiddo we see out and about in our community using a speech device, but nobody said or did anything to him that would have caused Tony to think they thought anything unusual about it, and I was extremely thankful for that. He’d only been shown the new Trick or Treat button on his AAC device shortly before we left and given one opportunity to practice it with me, but he used it appropriately on his own at most houses we stopped out. I remain filled with joy about how well things went- I know some of you already got texts and heard all about it, but he did amazing.

Before I close out my thoughts on what I have been grateful for lately, I would like to express a note of the deepest appreciation to the fabulous Miss Whitney, who many years ago, when I started painting Tony’s Halloween shirts (he can’t tolerate the costumes for sensory reasons), recommended that we at some point use the Mike Wazowski eye. Took us a while to get there, and I totally gave up painting them myself a long time ago and just bought the shirt he wore this year from Redbubble, but I have always loved the idea and am grateful to her for sharing it with us <3

Some Reading To Consider:

These Doctors Admit They Don’t Want Patients With Disabilities, by Gina Kolata, as reported in The New York Times

This is an article I think is important for each of us to read and consider the ramifications for what it is like to be on all sides of this discussion (you can click on the title above for a link). Further, I would also add that these kinds of experiences are not limited to doctor’s offices, but that families of disabled loved ones can experience the same types of things from therapy providers. I know I have. Each of us are human beings, and for the vast majority of us, that means that, even if we were not born requiring any sort of support or assistance above the usual, at some point we all face an increasing likelihood the older we get of experiencing a more permanent condition that might require extensive medical or therapeutic support. Accidents, strokes, cancer, etc…life often happens in all sorts of altering ways.

What would we want to have happen to us personally? And perhaps you are not currently a parent, but what if one of your future children ends up having deficits and needs similar to my sons or if a beloved child of another family member does? What would you want for them to experience? If you are a provider, is the experience you would personally want the one that you are giving your clients and patients? And, what kinds of changes or supports should we as a society be advocating for so that it was easier for medical providers to feel comfortable treating individuals with disability? Because some day, if it’s not already now, it is likely to be you, it is likely to be me, it is likely to be someone we know and love deeply…and while certainly I would hope this wouldn’t be the case, we too may come to find when it’s our turn, that we sometimes or even often struggle to find the support our condition requires.

A Matter of Temptation, by Stacy Reid

So, I have to start this off by giving a cleanliness disclaimer. For my loved ones who have more conservative religious views, the level of detail that is given to describing acts of intimacy in this book is such that out of respect to your own personal views on those matters, I cannot recommend this book for you, personally. However, I do have a reason for discussing this book here and I welcome you to at least consider my ramblings on that.

So, in a nutshell, this is a romance between a gloriously gorgeous young woman (Mina) with an incredibly damaged reputation and a handsome as hell, ridiculously rich, and socially admired Earl (Simon). Who, while the author never flat out states as such, clearly is meant to be somewhere on the spectrum based on her descriptions. I present just a couple quotes to substantiate this:

“There was a part of him that had felt removed from the world and its idiosyncrasies even apart from emotion.”

“She jolted, her eyes widening, and it sunk into his bones then that he had never used such words with her before. Not in all the years she had tried to cuddle him close as a lad, or even as a youth when she spoke words of affections to him. He had always shied away for he was not an emotional boy, and he had never returned her grandmotherly sentiments. ‘Before I met Miss Crawford, love was simply a word. Now I understand what the word conveys…’ ”

There’s more of this type of narrating sprinkled throughout the book. So these are stereotypes that I think many of us can recognize at this point. This is a grown man saying he’s never felt love before, and perhaps that may be the experience for someone, somewhere out there on the spectrum. While I do certainly think it’s pretty awesome to have someone who is seemingly Autistic cast as a romantic lead, I will tell you honestly that I don’t know a single Autistic individual who doesn’t love, doesn’t feel emotions- and I only know one personally who I would say might struggle to develop bonds of that nature. Multiple generations have demonstrated that Autism is an inheritable trait on my mother’s side of the family tree, so if you are reading this and you don’t know me personally, that informs my opinion on this. So, I personally would have preferred a more nuanced approach to that within the narrative for starters.

Now, I prefer to keep my blog mostly G, so I’m not going into details about this next topic. But according to a study linked here, “Over 96% of children with ASD report hyper and hypo-sensitivities in multiple domains.” And those children grow into adults who still have some sensory differences. As that is such a strong finding, while I know romance authors are here to sell the fantasy, I would have hoped that at least some of that reality would make it in there also. Perhaps Simon wouldn’t have wanted to be kissed right over his ear because he would find the sound painful, something like that. There’s lots of different ways sensory differences could impact intimacy.

Overall, this was a cute book. I enjoyed the overall writing, I felt she didn’t rely on a commonly used conflict trope (Jane Eyre has a somewhat related obstacle, but there are some definite differences in what this author does to frame that barrier to a relationship of respectability) and I loved that the author didn’t insist on officially diagnosing him within the narrative. I really do think we all should just be looking at one another as fellow humans, each with certain strengths, each with certain weaknesses, each with certain needs. However, since she relied so heavily on a recognizable stereotype, she may as well have formally narrated a diagnosis. And ultimately that’s why I would recommend reading this. Words and stories have power. Sometime it’s good to romanticize something, but perhaps it’s even better to normalize things as they really are.