To Jenny
From the first day you met with us on Zoom you have been a constant source of support and positivity. You heard my challenges, you listened to my feedback, and you stepped in and offered to help with things you didn’t have to, like social stories. You were understanding when Tony was struggling to adjust to the change and bond with you over teletherapy. And within weeks of transitioning Tony onto your caseload I was struggling with health challenges of my own. I can’t tell you what it meant to me to have you reach out with your own experiences, understanding, and support when I went into anaphylaxis and as I was going through the diagnosis process. I can’t even tell you what it means to me that you look past those moments when our son doesn’t want to cooperate and recognize what he can be capable of. I am so very grateful for your patience with both of us, and we are so thankful to have you as part of our little man’s therapy team.
Dr. Boesel
Y’all, my allergist doesn’t read this blog and I typically don’t name my personal providers. But I have been asked who I recommend in that capacity. If for some strange reason he were to ever find this, what I would want him to know is what I would want each of you to know about why I would recommend him, and that is that I really appreciate that he listens to me. Last visit, we were talking about a treatment he was proposing for one of my current conditions and I indicated some concerns because it wasn’t a good time in my life in case I reacted to that medication. For me, medication reactions are frequent enough that whenever anybody proposes a med, my first reaction isn’t “yippee, this will fix everything,” it’s “crap, how bad could this get?” He didn’t shame or push me, he just said we could try it when I was ready. I can’t even tell you how much I loved that, and that he took the time to look at the area on my back where a lesion was removed just to see if there was anything concerning that I should rush back in for follow up on. That’s definitely not something he needed to do as part of my visit, and I felt cared about as a person and a patient. And I love that. So that’s my recommendation for those of you who are local.
Some Reading To Consider
For a parent of a child with severe autism or other significant special needs, having our feedback being ignored in medical circumstances is a near constant trauma. Some of you may remember a trip to the ER with Tony when he was 4, and that the doctor there didn’t want to listen to the paramedics’ recommendations or mine for sedation…so our son was held down by five people, including myself, while he was screaming, hysterical, and fighting with all of his strength against the placement of a pressure bandage. Which, the provider made far too tight because of the difficulty/rush of the working circumstances, and it left Tony in so much pain he couldn’t sleep and I held him the entire night keeping that bandage on as he frantically tried to remove it. Next day at his PCP’s office when it was removed, we could see the damage from how tight they put it…angry blisters and tissue damage on most of his fingers. Ultimately, it is the child or the family that gets hurt the most by this type of situation, and I love that anybody is using their voice to raise awareness for this.
From pictures sent to someone via text a few days later as the damage was starting to heal, Andy was driving at the time I was texting from the passenger seat, so between that and the phone the image quality isn’t great
Malice, by Heather Walter
This book is the first in a duology where the sleeping beauty story is creatively re-imagined with a romance between the character who is pushed into the evil sorceress role and the cursed princess. As a romance, I honestly kind of hate this. I also think it could play into some pretty negative stereotypes. I’m more than halfway through the sequel, and to me, I don’t see the relationship as having any possible healthy dynamic because of what has happened in the plot- though certainly I will be interested to see how the author wraps this up. So, we’ll just start off with I’m not recommending this as a romance, LBGT+ or otherwise. What to me is most compelling about this book is that it seems to ask the question of who really is the villain. And, is a person really a villain if that’s all they are ever allowed to be and all they are told they can ever be?
One Other Recommendation
For a good long while now the scale we’ve been using with Tony for practicing doctor’s office skills during habilitation has been malfunctioning. I finally got sick of it and ordered what was a well-rated scale from Walmart. Yesterday when it arrived, it became apparent that the display only showed Kg, and if I wanted an easy pounds conversion I didn’t have to think about or have access to any of the other features (alleged body fat percentages), I would need to download the product’s app. Because the scale wasn’t registering Tony’s weight at first on the app (but it was on the scale), I stepped on it with some stuff on me I don’t normally have on my person when being weighed, and then I tried it again with Tony. When I noticed that the report on him labeled him as chubby, I went back in and looked at mine, and it had labeled me as obese. Even with the extra things I had on my person, the five extra pounds that put on me from my current weight wouldn’t put me in the obese category for my frame size.
The first picture is me yesterday at the end of a very long day of therapy…and the other two pictures are from a couple of weeks ago, when I actually weighed 2 pounds more. Yes, I know I’m not skinny and I have been hearing people’s opinions about that my entire life- and plenty of people still look at my size and see “fat,” or “chubby.” I prefer bodacious, thank you very much. But, no subjective view about what is attractive changes that there is a medical definition for obesity…and I don’t qualify as obese. For the record, I am currently 5 pounds above the upper limit of the healthy weight range for my frame size…which isn’t even that overweight.
Let’s just look past the fact for the moment that I hate, absolutely hate that this app uses shaming language like “chubby” to describe anybody’s weight. We’re talking about this because fitness and health apps are common now, but that doesn’t mean the information that is being imputed for you by the application based on how it was programmed is correct. But if you don’t realize it, what that display tells you could do a whole lot of damage to how you think about yourself and how you manage your health. If the frame of reference being used to interpret your numbers by the developers is itself flawed, inaccurate, or incomplete…what you get back likely won’t be accurate. As a large framed woman, I recognized immediately that the frame of reference they were using to compare me to was a small framed woman. And there’s a definite difference in what is considered healthy weight for a small framed woman versus a large framed.
This was a distinction that was made to me during the first of many meetings I had with a dietitian in my twenties. And that is what I recommend for anyone really concerned about accurate information about what is healthy for them, what their frame size is, or who is concerned about a more accurate measurement for body fat. Go talk with a dietitian. And perhaps delete the app…that’s what I did.
