. . . One Step Back

Some of you might recall my post a few weeks back, when I triumphantly approached the Assistant Dean with my new, comfortable description of SPD as a "disability," and the hours and tears it took to reach acceptance of this potent term. I spoke to my OT and therapist, requested paperwork, and filed it with the university - in all of my "free" time (which these days seemingly consists of an hour before bed every night, assuming I'm not rushing to have dinner, unpacking or repacking for my next hour+ trip to the Bronx, etc. This endless schedule of two jobs and four classes plus commuting will be the end of me, really.)

So he and I set up a meeting, and I scrambled back up to the boogie-down borough early one day this week to discuss the university's findings on my paperwork. I'll sum up our meeting by saying it was a disaster of epic proportions. The university doesn't consider me as someone who needs support (not disabled? So where are we now, then?), and apparently he didn't think much of me either, saying they didn't believe there really was anything wrong with me, and therefore, they were unwilling to support even my smallest requests of just letting professors know of my diagnosis. As a normal, human being with emotions, I started to tear up - a habit of mine (I rarely hide my feelings) - and I asked him, while swallowing these forming tears, why we even bothered filing this paperwork if I didn't fall under their own personal category of "disabled." My questioning lead to a barrage of negativity from him, questioning my career path choice, and flaunting his power over my eventual graduation from their program. He described my reaction as "inappropriate," which is humorous in retrospect, as yelling at me for 10 minutes for my reaction was beyond inappropriate. Essentially, I apologized for displaying an emotion in public until I was able to calm him down enough and back out of his room. Later, I spoke to a second-year student with a disability, who said his behavior was par-for-the-course, and not the least bit surprising. Unfortunate, really, that in life we find those who are least suited to helping others are often placed in positions of some power.

Yesterday, to cap off this week, I received a paper back from that initial class where I was considered "disabled." I nervously looked down at my well-thought-out document, at my first grade from my graduate program. It was an A+. Josh, ever the humorist, said, "what, you couldn't do any better? You couldn't get a prize AND this grade? What, no car?" :-)

In other news, I've cut back on my listening device for now, as the hour stints were making me seriously nauseated and way more labile than usual. Half-hour sessions are still affecting me, but not in such an adverse manner. I find my middle ear feels sensitive on both sides, and I can't tolerate listening to an iPod even an hour after the listening program. I've been reminded a few times that it's always a step back before moving forward. Doesn't that just sum it all up.


  1. Hi, I'm Jaimie. I found your blog through the SPD forum.

    I'm so sorry about what happened with your university. There have been times when I've thought about getting the proper documentation for accommodations, but never followed through. Partially because of worrying about that sort of reaction and partially because I seem to be doing alright without accommodations. I'm having a problem handling the papers they hand out right now though, the texture is really bothering me. I really have no idea what to do about that.

    Oh, I HATED the listening program. I couldn't tolerate it for more than 10 minutes. It made me anxious and it just hurt to listen to. I think following through with it would likely have helped with my auditory issues, but...sigh. I'm super impressed that you can listen to it for as long as you do.

    What program are you in?

  2. Hi Jaime,

    I'm so glad you found my blog! Reaching other adult SPDers is my main goal, but it's hard to find a way to get out there. Which SPD forum? If you haven't been to spdinternational.org, I'm gonna recommend it to you. My friend runs it, and he's an amazingly wise adult SPD. He's total guru material :-) But obviously, glad you're here too.

    Yeah, my school wasn't so flexible with accommodations, as you already read. I understand their reasons why, I guess - we're not yet in the DSM, and we're pretty new, but it just felt upsetting and unnecessary. It's hard enough to deal with this diagnosis' treatment, let alone deal with what people think, and what it means about who we actually are and who we are because of our disorder.

    When were you diagnosed? And how old are you?

    May I also ask what your specific issues are? (Obviously tactile!) I'm like you with paper, but usually I'm excited when the texture is just right. Don't think I've ever been completely turned off. Can you bring it somewhere and make copies of the documents, so you can touch the paper that makes you more comfortable? It continues to amaze me how tiny tweaks in the environment make all the difference.

    How long did you stick with the listening program? Was it just that first 10 minutes? It's pretty rough, I must say. I haven't even captured the depth of how difficult it's been (I feel like it's made my anxiety issues worse and it aches behind my ears - and oddly, my eyes - all the time now). But I'm really working under the theory that it will help, but it just takes time and patience.

    Sorry this is so rambly, finding adult SPDers is like finding gold. It feels like we're so rare right now, but I suspect more of us will come out of the woodwork as the disorder gains more recognition.


  3. Rach,

    It is SPD International - I introduced myself a while back (with a plea for help), but haven't gotten it together to reply to everyone's awesome comments. Here is my intro: http://spdinternational.org/forum/showthread.php?tid=116&pid=430#pid430 Are you talking about Dan? I found the forum through his Yahoo group.

    I really think SPD will be in the DSM soon (reeeeallly hope so!). I understand the difficulty in dealing with diagnosis and coming to terms with it. I have become more comfortable with it over time and am pretty open to sharing about it with people.

    I sought a diagnosis after realizing I didn't think I could use a pencil (and hear everyone else using a pencil) for the 3.5 hours it would take for me to finish my Praxis exams. This was either the end of Junior year or the beginning of senior year (I think 2008).

    However, I've clearly had sensory issues my entire life. When I started talking to my Mom
    about this and she started to do some reading, she basically said something like: "Oh wow, yeah that's you!" I'm 23 now

    I deal with the paper, but I'm not happy about it. Books have been a problem lately which makes me very sad, as I love to read and certainly can't afford a Kindle or anything like that at the moment (and I love holding a book, or I used to...)

    I need to go to bed now, but check out my intro for a good description of my issues. Oh and I wrote about my "quirks" on my blog many times. I'll give you the links with the warning that A) I'm not a writer B) it hasn't been updated in a long time C) a lot of it is rambly and long - I don't know if ever posted after having gone to the OT for therapy. I can't remember... and please don't feel obligated to read everything, I just figured I'd give it to you in case you were interested. Enough warnings?




    In regards to the listening program: I didn't stick with it long enough to probably make a difference. I think I gave it an effort for about a week or so. I just really couldn't take it. I'm not sure if there was a problem with the CD and it was skipping (it seemed like it), or that it was supposed to sound like that. It just absolutely ramped up my anxiety and plain old suuuuucked. I really need to get back to an OT and need to be as strong as you obviously are and give it a 2nd try!!

    It is really nice to find someone else, isn't it??


  4. Oh, I looked at my introduction on the forum. It really only talks about my texture issues.

    Auditory: I hate listening to things that have too much going on in the background (hence why I hated the listening program). My brother and I just drove 7 hours together and he likes techno/electronic music. I kind of wanted to kill him.

    I have a really hard time focusing if there are too many things going on (not just auditory, but that's a biggie). This is kind of complicated because I also have ADHD, so who knows where the issues are stemming from. I have a problem when I am in a lecture a light is buzzing, it takes me a good long time to stop hearing the noise (if I can) and focus on the lecture. My psychiatrist has this nasty, tiny little office and her fluorescent (ugh) light buzzes off and on. Every time I am there I comment on how awful it is and she says: "Oh, I didn't even notice."

    I have a really hard time seeing things when there is a glare (don't know how abnormal/normal this is). Night driving is a bit challenging because of headlights (they really bother me) and I have a hard time with perception (where the median is, eek). This was worse when I was little. When drove anywhere at night, I always hid my head because the lights hurt my eyes.

    I am very clumsy and this is sooo sooo soooo much worse when I am tired. EVERY issue I have is worse when I am tired. I was talking to my brother on our trip home about some of my issues and I mentioned that I HAVE to get at least 8 hours of sleep. My flip reason for this is that I am a grumpy jerk without. However, the truth is that my sensory system is hideously out of whack without enough sleep. I run into things, trip more easily, have trouble touching almost everything and am just on complete sensory overload. This will cause my anxiety levels to shoot through the roof and I get shaky and just feel like crap.

    I wear tank tops underneath everything because I don't like how waistbands feel. I also look a little better with something to keep my rolls sucked in ;)

    I know there are other things, but I am tired and if I don't go to bed soon...tomorrow will be an off day.


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