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23 Years of Misunderstanding. My story.
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Jukali Offline
Newbie

Posts: 3
Joined: Apr 2011
#1
23 Years of Misunderstanding. My story.

Hi everyone, my name is Ardy, I'm a 22 (almost 23) year old male and I would like to share with you my story.

As a child, I struggled with Tourette's syndrome and OCD. This created great difficulty with my social development, but more importantly, it made SPD indistinguishable due to Tourette's heavy outward symptoms (luckily Tourette's dissipated during puberty with the help of haloperidol).

Recently, I was diagnosed with ADHD, and although ADHD runs very deeply on my mom's side, I'm not sure if I was correctly diagnosed for it, because my biological father was notorious for being extremely clumsy (as am I).

Okay, let me say get to the good stuff. Today, I feel like I've had the biggest breakthrough of my life. I feel like I've been living in a world that no one has ever understood, and that finally, everything makes sense, of why it is the way it is.

I want to express things, but it's so difficult to turn them into words properly (ug!!).

I took the time today to record some of the peculiar events of my life, so I'll just try to share that with you guys, and you have no obligation to read it, because it's quite long. Perhaps a quick skim? Sorry, I'm tried to rewrite it here more coherently, but it feels like I can't type what I'm feeling, so here it is:


1. Sensitivity to touch: Continuously take jacket on and off for the physical sensation (texture, and temperature) when speaking to friends in a comfortable location.
2. Pressing of the knuckles against gums to generate mild pain (it is a pleasurable sensation).
3. Pulling of interior upper lips over the upper teeth.
4. Rubbing of surface of tongue over roof of mouth for sensation.
5. At times, the tongue and throat are extremely ticklish without apparent stimulation.
6. My hands apparently have a habit of folding into a fist, with the thumbs tucked away on the inside, to avoid stimulation when in jackets (and when in jean pockets, the right hand touches the wallet surface, and the left hand touches the smooth surface of an MP3 player). My mom was always angry with me for putting my wallet in my front pockets when attending fancy places, and I never had a conscious explanation for the reason of carrying my wallet everywhere. (The left hand, when there is nothing in the left pocket, curls in on itself, similar to when in the jacket pocket).
7. Prefer to keep coat on in foreign locations, and when asked to give up coat, usually resist multiple times.
8. As a child, when at home, I ran around without any clothes from the waist down, and whenever they put it back on I would take it off again, because the texture around the waste was excruciating.
9. As a child, had difficulty falling asleep and staying asleep, and regulating appetite and thirst. I would wake up my grandmother every night and ask her to make me food (which she did, and stroked me until I fell asleep again).
10. As a child, I would lick my fingers, chew on the sleeves of t-shirts, and straws.
11. When sitting, habit of always putting left foot underneath right leg (so the surface is not touching anything), and the right foot either rests on the 5 toes, or even odder, on the backside of the 5 toes.
12. Unanticipated touch is painful from strangers.
13. In grades 6, 7, and 8, upon waking, I would lie in bed and roll my ankles over the surface of the bed sheets for 1 hour with such severity, that it has caused abnormal growths of muscle on the ankles which are still quite apparent and protruding.
14. In grade 9, I used crack my knuckles continuously, and also I rubbed the bones of two of my fingers to induce pleasurable pain so often, and with such intensity that it caused a growth of calcium deposits, and now the middle finger is disproportionate in comparison to the other hand.
15. Incredible tolerance for severe pain (such as waxing of chest, and extremely hot water), yet contradictorily low tolerance for light touch/wind/etc.
16. Most of my teenage to adult life, I’ve walked around the house in a t-Shirt and shorts, despite the house being extremely cold (would cover legs by stretching T-shirt over them, until I was continuously discouraged).
17. When my teeth were loose as a child, I would always pull them out with my hands (and never understood why kids made such a fuss about it). I actually enjoyed the pain of pulling the tooth out.
18. Medical needles at times feel dull, whereas cut hairs (from a hair cut) feel like piercing needles.
19. In Psychology class, on the two-point discrimination test, the sensitivity of my finger was lower than the sensitivity of my neck.
20. I am clumsy and uncoordinated. Every once in a while, in the house, my shoulder bumps into a wall even though in my mind I am walking perfectly straight (biological father was known to be clumsy to such a point that it continuously caused family embarrassment. Oddly, he was an expert in fine motor movement (calligraphy, and he was also a musician).
21. I break things, and spill things, much more frequently than the average person.
22. My writing has an upward tilt and I have trouble maintaining consistency of spacing and word sizes.
23. Difficulty reading. I never read a book out of my own interest until Grade 9.
24. Tendency to continuously stroke my face during creative thinking.


25. Extremely sensitive sense of smell. Will often notice smells that are hardly ever noticed by others. Examples:
• Driving on highway made the comment “it smells like new shoes,” and three kilometers later we passed by a shoe factory.
• Smell of rot. A few months ago, I told my mom something foul like fecal matter was in the house, and a week later she found rotting garbage in the garage (which is completely closed off from the house).


26. Extreme taste abnormalities:
• I would sometimes drink vinegar, or vinegar with salt.
• I often go to the fridge and small amounts of different sauces, for the mere stimulation of taste (and when eating something that requires condiments, like a hot dog, I pour many different sauces, and a lot of them)
• I have eaten extremely contradictory foods such as eating an olive followed by sweet cherry jam, continuously over and over for the fluctuation of sensation.
• Eating chocolate along side with a sour yogurt drink.
• Eating chocolate along side with tomato cocktail.
• I would avoid extremely textured foods as a child (more normal than the general I had become accustomed to), often I would feel like gagging when eating foods (especially one with snow peas, which had a highly textured hairs on the exterior of the skin, and little globules that would pop out of it).
• I have always preferred three foods over everything else and have never gotten tired of eating these foods, even though I sometimes eat them every day: pasta, pizza, and lasagna.
• When I was a child, I could not tolerate the texture of ice cream, so what I would do is take the ice cream, microwave it, then with a spoon mix it till it was entirely softened and homogenized. I now have an extreme appreciation for the textures of foods, and will eat foods like blue cheese with a wide variety of herbs and vegetables simultaneously for heightened stimulation.
• I find the texture of carbonation stimulating and relaxing.
• I have always found it abnormal that some people can’t tolerate the sting of mouthwash, as I will hold it in my mouth for up to a minute, and I would hold it even longer if I had the patience.


27. Extremely sensitive to high-pitched sounds.
• When buses press the breaks and stop, I have to cover my ears, otherwise I get shooting pains in my ear. On the Skytrain, sometimes the sound proofing is so awful that I have to press both my ears closed.
• I have often told people to shut up or to stop speaking. I have continuously told my grandmother to stop singing. The simple sound of a fork gently hitting the tips of my parents’ teeth can at times be excruciating (not to mention the metal hitting the plate).
• Need music to wake up, to think clearly, and to be expressive.



28. Listening and speaking.
• Will often ask “What?” continuously (as many times as 10 times in a row), because even though I hear what the person says, what I actually hear in my mind is garbled. This has lead to being made fun many times in school, and being labeled deaf by other kids.
• I can never coherently express what is in my mind through speaking. It comes out as something very difficult to understand (not to mention I mumble, and to me, the mumbling sounds perfectly articulated). When people don’t understand, I try to rephrase, and it becomes even worse, until I give up.
• Will often make mistakes while driving, when other people are speaking in the car, even though I don’t necessarily listen to the conversations (my biological father attempted to, but was unable to successfully drive, so he has never driven).



29. Regulation of Emotion and Motivation:
• I feel emotionally dead upon waking, and require significant amounts of stimulation before I can be “normal.” If somebody walked in my door, after I have been awake for let’s say 1 hour, and tells me “your mother is dead,” I would not be able to feel anything, and I’d be forced to fake the emotion for the person telling me.
• Yet the opposite is true by night time, if someone told me the same thing by night time, my body would be so awake, alive, and sensitive, that the emotions I would feel would be probably hundreds of times stronger than a normal person.
• Extremely emotional when watching movies, especially at the movie theatre, especially, if it is night time
• Overstimulation of emotion during night time, whether provoked through movies or through thought, causes me to enter crying spells that can last for hours (yet in the morning I would not have the ability to shed a single tear).
• Continuously feeling the pain of others; when I see someone in pain, I experience that pain, even though I don’t want to (unless it is morning).
• Extremely motivated and passionate at night time. Discouraged upon awakening the next day to find all the enthusiasm and passion dissipated…
• Will use loud music, television, and available sensory input, to wake my system up. I am reluctant to go to bed early, because night time is the only time I can feel like my true self.
(This post was last modified: 04-06-2011, 08:08 AM by Jukali.)
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AngelaVA Offline
Regular

Posts: 163
Joined: Nov 2010
#2
RE: 23 Years of Misunderstanding. My story.

Welcome!! It sounds like you've come to the right place. Wow, so much of what you say is amazingly familiar from parenting my daughter who has SPD. I'm sorry you are dealing with all of that for me it's interesting to read though because a lot of the times when my daughter experiences those things people try to tell me she's just being bratty or manipulative and I know she's not! FWIW I think the way you outlined everything is very coherant and insightful.

Are there any questions we can answer for you?
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Jukali Offline
Newbie

Posts: 3
Joined: Apr 2011
#3
RE: 23 Years of Misunderstanding. My story.

Thank you so much for taking the time to read.

One thing that I have been wondering is if it is common to experience this fluctuation from being under-sensitive in the mornings to being super-sensitive by the night time.

I think puberty might have an affect on changing energy levels, but I don't quite remember how my energy was as a child, except for the fact that I could never be put to sleep (and would wake up at 3:00 AM extremely hungry).
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LynnNBoys Offline
Regular

Posts: 277
Joined: Dec 2010
#4
RE: 23 Years of Misunderstanding. My story.

Hi, Jukali! Welcome! I've been learning about SPD since my son was diagnosed in '08, but the more I learn, the more I find things that I relate to. And a lot of the things you've listed sound like things I've experienced too! I can relate to the smell sensitivity. I'm addicted to candles to cover up normal house smells. I can tell immediately if a food has gone bad. My husband is always asking me to smell the milk to see if the milk is turning bad because he can't tell.

Most sounds are too loud for me. Everyone seems to watch TV louder than I like. I talk very softly and people ask me to speak up often. I also say "what?" often even though I've heard all the words, but it takes my brain longer to put them together so they make sense, usually by the time I've said "what?" I tend to watch a person's mouth while they speak to help me understand and process what they're saying. I have to remind myself to look a person in the eyes and not watch their mouth all the time. I've had hearing tests and they are normal. The sound of my dog licking makes me crazy--it will even wake me from a sound sleep in the middle of the night. If he doesn't stop right away, I have to plug my ears and hum to cover the sound.

I've always been clumsy too and tend to not quite make it around corners, usually hit my hip or shoulder. I think I have a higher pain threshold than most people. I have 3 tattoos and thought they weren't that painful, more like an annoying scratching and then feels like a sunburn afterward. I've delivered both of my sons naturally with no pain medication--painful but not beyond tolerating. Yet my feet are extremely ticklish.

I'm very empathetic and emotional too. I fainted in college while watching a movie (Unbearable Lightness of Being) in one of the lecture halls, because a character in the movie dislocated his shoulder and I experienced his pain. Sometimes I can't watch The Office because of the embarrassing things Michael Scott (Steve Carrell) does. I have moments of very very low self-esteem. I have been diagnosed with depression and anxiety. One psychologist suggested I had OCD thoughts, but there's another thread elsewhere, where I discovered those thoughts (little movies, I call them) are probably related to SPD.

Are you receiving any treatment currently? You said about the ADHD diagnosis. I think there're a lot of people (kids and adults) who have been misdiagnosed with ADHD, or at least have both ADHD and SPD. Have you seen the checklist for SPD? There's a great one on this website: http://www.sensory-processing-disorder.c...klist.html I would bring the list above and the checklist to either your primary doctor or a psychologist if you're seeing one. You did a great job on your list!

I'm glad you've found us here! I hope you'll stick around and offer your perspective!
Lynn Shy
mom to 2 boys, one avoider and one seeker
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Jukali Offline
Newbie

Posts: 3
Joined: Apr 2011
#5
RE: 23 Years of Misunderstanding. My story.

Yes! I have the thing with corners too! My shoulders are always bumping into corners.

My feet are also super tickilish as well, I never have more than 5 toes touching carpet-like surfaces.

You know what the funniest thing is!!! I have that thing with the Office too, my god I feel so embarrassed when I watch that show, yet I still watch it for some reason... and even more peculiarly, I found it really odd that a few nights ago I was feeling extremely embarrassed for a cartoon character!!! (Peggy from King of the Hill).

I'm currently on Straterra for ADHD, which seems to have it's benefits and downfalls.

And yes, I've printed that list, and I probably would fulfill around 80% of the stuff on it.

I'll be seeing my doctor in a month, and I'll see what he thinks. Thanks for sharing! Smile
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