Masterpost Blues

I’ve been trying to come up with some kind of “SPD masterpost” series since I started group therapy a few weeks ago (and individual therapy last week). It’s really interesting, and I’ve learned a lot about the current research going on for SPD. They always give us handouts, and we usually do some kind of activity as well. I think the information is really good and I want to try and bring that to people.

But when it comes to putting the actual post together…maybe I’m just not a “masterpost” kind of writer. Or maybe the words just haven’t come to me yet.

Honestly the things that keep coming to me are some serious doubts about how effective the occupational therapy will be. This isn’t because the therapist isn’t skilled, it’s more because I’m afraid that treatment doesn’t yet exist for my most pressing symptoms: hypersensitivity to noise and smells. Sure, I can cut through the sensory input to complete a task for a test or during a session, but in real life? When I walk past someone at the store with too much perfume, or when something gets dropped on a hard floor, what is there to help with that? My threshold for these things is much lower than the general population, and from what I’m reading about other adults, this is nearly impossible to change. Most of the therapy so far has focused on knowing how to recognize when my body is reaching its limits, which is very valuable, and I’m getting much better at it.

Well, at least she had a good suggestion last week: Do some job shadowing while I’m in limbo. Not so much for the “what” and “why” as much as the sensory needs. I can be happy doing almost any type of work, because I find so many different things interesting and I can figure most things out with proper training and guidance. Finding purpose is not difficult for me either, it comes down to a combination of being interested in the work and valued by the organization. However, the only way to know if the sensory needs will align with mine is through some real-life experience. Every work environment is so specific, even within a particular field. I need to find people I know that have worked in a variety of different places, so that I can get as much information as possible. It’s likely that whatever I choose will require more schooling, so I’d like to get an idea if it will actually work for me before I take the plunge and spend all that time and money.

Things are still hard, I’m still struggling physically with back pain and some hand issues, but both are getting better. Only thing to do is keep moving forward, even though I just feel like I’m spinning in circles the whole time.

 

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Masterpost Blues

I CAN PLAY THE HANDBELLS AGAIN!

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You have no idea what I’m talking about.

Hooooookay, I’ll back up and explain (but seriously, I CAN PLAY HANDBELLS AGAIN!).

I’ve been playing the handbells on and off since I was in middle school, along with many other musical endeavors. My favorite bells to ring are the lower ones, which may surprise folks due to my slim stature. Prior to all the issues I’ve had with my right hand, this was no problem. Plus, I just love subverting stereotypes at every possible chance (like working manufacturing jobs until recently).

Last fall, I decided to audition for a local ensemble as I knew a couple of ringers in it already and I had substituted at rehearsals a couple of times prior. Plus I was excited to try out for an ensemble that I thought would push my ringing skills. I was worried about my hand issues, but I had nothing to fear. There are a variety of ringers in the group with a variety of restrictions in terms of what bells they are able to ring, so our director is very accustomed to accommodating everyone’s needs (and it usually works out pretty well). I was put on the smallest bells for a majority of our Christmas program, but that wasn’t without its challenges.

In our group, the upper bell ringers are expected to ring octaves when called for in the music using a technique called shelley ringing. This means that you have two bells in one hand. This was no problem for my left hand, but because of the way you have to rotate your hand to ring this technique, and the added strain on the fingers, I was unable to do it with my right. Fortunately, other ringers in the group were able to help and fill in the gaps when they were not ringing their own bells. It required a bit of coordination, but we were able to pull it off for the first part of the season.

Fast-forward to November, and I’m getting ready to have hand surgery the day before Thanksgiving. We’ve just played a concert on the 10th, and are rehearsing for our busy December schedule. My doctor assures me that I will be fully recovered from the surgery in 2 weeks, no therapy needed, in time for our first concert on the 11th. Just to be safe, since I’ve been having hand problems for so long, she wants me to keep the bandages on for a week rather than the usual 3 days.

The bandages come off and my hand is frozen. I mean, I can barely move it in any direction without excruciating pain. I’m thoroughly bruised from my top knuckles all the way down to the middle of my forearm. I can’t even form a full grip, the tendons in all of my fingers have tightened so much. And it’s not getting better as the days tick by. Then, three days before the concert, my thumb tendon starts acting up and I can barely hold a pen long enough to sign my signature, let alone a handbell. I am panicking.

Fortunately, this handbell ensemble is full of wonderful, talented people. On the fly, they step in to help me where they can by taking on some of my right-handed ringing, and I fill in the rest when I can and use mallets when it’s too much. It doesn’t sound great, but the notes are there. I’m disappointed and frustrated, and feel like I’ve really let the group down.

After our last December concert, I finally get in to see my hand therapist, and begin twice-weekly torture sess-I mean, therapy sessions. I’ve been through hand therapy before, but holy crap this is brutal. The main problem is this massive mound of scar tissue that’s formed on the incision site, locking up major tendons and nerves and inhibiting joint mobility. The only cure for that is manual manipulation, or “massage”, but not the fun kind of massage. I sit there, squirming in my seat, trying not to scream, remembering to breathe (heavily and loudly), while she twists and pushes and pulls on the frozen tissue. I have stretches and manipulations to do at home in between sessions

Already, after just a few weeks, I can’t believe how much improvement I’ve made. My grip is mostly back, my mobility is much improved, and I have less tendon pain every day. Last week, she started me on strengthening exercises in addition to the passive stretches, that’s how much I’ve improved. I was excited to test my new abilities at our rehearsal, but it got canceled due to the snowstorm that blew in last Thursday. There was some debate as to whether or not we would still play our concert yesterday without rehearsing, but on Friday I got an email that we were gonna go for it.

During our warm-up, my hand is feeling good. I mean, zero pain. Holy crap, this is incredible. I keep it warm by doing stretches before we start. As we’re playing the concert, just for fun, I decide to try shelleying with my right hand.

It rings, clear and true, with no pain at all.

I can’t help myself. I bust out a big, goofy grin right in the middle of our concert.

I excitedly whisper to my cohorts on the next few pieces that they don’t need to ring my bells for me anymore. I can shelley again! After the concert, I’m flailing and bouncing around exclaiming that I can play again! Everyone else is excited too, because they know how much of a struggle this whole process has been for me.

Since the surgery, I’ve been using mundane, everyday things to track my progress. First time I could grip the steering wheel at the top instead of underhanded, first time I could adjust the car heater without multiple hand movements, first time I could turn the key in my house with one motion, first time I could pick up a full dinner plate without pain, etc. This, being able to play with two bells in my hand, is the biggest step of all because I couldn’t do that before the surgery. I was so scared at first when I was having so much trouble after the surgery that I had made a horrible mistake and would be permanently unable to play (or do many of the things that I love) again.

Now?

Maybe I’ll even be able to go back to playing the taiko drums again eventually (which I love so much and it has been so hard to be unable to play them).

I CAN PLAY THE HANDBELLS AGAIN!

Names Are Hard

I struggle with coming up with names for things. Over the years, I’ve found that if I just give it some time the right thing will often come to me, usually in a blaze of “AHA!” and then scrambling to find a pen and paper to write it down before I forget.

This blog was no different. I knew after reading several blogs by other autistic and disabled adults that I wanted to start my own, but I was utterly stuck on a name. Everyone else has these cool, quirky, creative names and I was shooting blanks.

Last February, I was officially diagnosed with Autism Spectrum Disorder. Things have been…a bit of a dumpster fire since then. Not because of the diagnosis so much as a cascading series of inevitable events that have happened at THE WORST possible time. Damn you, Murphy!

This Friday, I go in to the STAR Institute here in Denver for my evaluation for Sensory Processing Disorder (SPD). This has turned out to be the most troubling part of ASD for me recently. I’m hoping that the occupational therapists there can help me find some coping strategies, because shit has gotten incredibly real this year, you guys. In addition, I finally found a psychologist (who works with STAR) that I finally feel “gets” me. Umpteenth time’s the charm, right? As she put it, the occupational therapists at STAR will help me with more functional, daily living aspects of SPD, while she will help with the emotional and behavioral issues that tend to go hand-in-hand with it. She’s not fully on board with the ASD diagnosis, but in a way I think this may prove better in the long run, because she’s already seen the invisible struggles I’ve been having. She suspects that I’m “twice-gifted” with  some undiagnosed learning disabilities, specifically praxis issues (trouble with sequencing events, motor skills, etc.), possibly ADD, and possibly some non-verbal learning disabilities (she hasn’t been specific on those yet). I also suspect a form of Central Auditory Processing Disorder (CAPD), but I haven’t brought that up yet.

All of this is in addition to some physical and occupational therapy I’m already in due to various other medical issues that have just become too much to deal with.

Do I consider myself disabled? At this point, yes, though you won’t hear me say it to most people. All of my disabilities are invisible, and I just don’t feel like explaining how fully emotionally draining it is to be putting in so much effort just to function like normal. How why my 3 hand surgeries in the past 3 years have been difficult to deal with because I have to put in small amounts of effort constantly to re-think how to do things that were once instinctual. How I don’t go to the movies, live concerts, local attractions, or even sometimes friend’s houses much anymore because I have to weigh whether or not the sensory load will be too much. How I used to feel confident in putting “learns new skills quickly” on my resume, but no longer feel that that’s truthful, and now I feel there’s a monstrous hole in my skill set that I don’t know how to fill. What kind of work am I even qualified for? How do I find a job that doesn’t set off my sensory triggers so much when all of my job experience has been just that? Can I even work with all the appointments I have to schedule and go to in the coming months? There’s kind of a limit to how flexible and employer is willing to be, especially with new employees. Is there a part-time job that will even look at my resume without immediately deciding I’m over-qualified?

You’re starting to see my dilemma.

This will be a place for me to document my process, a resource for others in similar situations, and another voice in the growing community of invisible disability.

So, how do I come up with a name for that?

 

Deep breath, just open up a Word document and write what’s on your mind for now. It doesn’t even have to make sense, you’re not publishing anything yet. The name will come in time.

One of the first autistic blog articles I read was Cynthia Kim’s When Being a Good Girl is Bad for You. It was like she was in my head, narrating a movie of my childhood. I immediately began to read more of her articles in a binge session. Some of them resonated just as strongly with me; others not so much. There was a hint of myself in all of them however, and I continued my search for more.

I can’t remember exactly what I was doing when it came to me, but I had the good fortune of being at home and could easily write it down: In Plain Sight. I scribbled it in big, uneven letters and circled it several times before setting it in front of the computer. What I couldn’t pin down was an exact explanation as to why I had chosen it. It was more of a feeling than anything else, and like a typical autistic I have trouble putting feelings into words. I loved the sound of it, but I couldn’t put my finger on why.

A month or so later, I was perseverating on Musings of an Aspie once again and I came across a paragraph from this article:

As girls, we learn to hide in plain sight. We hover at the fringes of social groups, giving the impression that we have friends. We sit quietly through years of school, creating the illusion of shyness. We let older girls take us under their wings, mothering and mentoring us in the social skills that they sense we’re lacking. We learn that there are rules and we set out to master them as best we can. We learn that we have roles to play and we struggle to fill them, often at the cost of our self-esteem.

Bam. There it was, the words that I had been unable to form with my flash of insight. As a child with likely undiagnosed disabilities, as an adult with invisible disabilities, I have been subtly learning to hide my quirks and stims and blend in to normal society. To pass as neurotypical. A year and a half ago I had never heard of two of those terms in that last sentence. Now I’m slowly opening my eyes to all the ways that I have squashed and squeezed myself into this mold that I’ve constructed from arbitrary societal expectations and norms. That mold is still there, and I still sometimes try to cram myself into it despite all the self-discovery that has happened for me recently.

The difference is, now I get to choose to smash it to bits.

So, here’s to all of us that have broken our chains and revealed our true selves from behind our masks. Here’s to the shy weirdos that have learned the rules and chosen which ones to reject and which ones to keep. Here’s to us with invisible disabilities that choose to smash stigmas. Here’s to us that are living life on our terms, not on someone else’s. Here’s to the mothers and mentors that have helped us along the way.

And most importantly, here’s to those that are still forced to hide in plain sight. I’m still right there with you at times. This will always be a safe place for you, and I look forward to walking this journey together.

Names Are Hard