Karen's Story
From An Undiagnosed, Untreated SPD Adult's Perspective
Born Learning Disabled with Dyslexia and Sensory Processing Disorder
Written by Karen
49, from New Jersey
All I can remember when I was growing up...
My schooling was very poor. I couldn't read, write, spell, do math, have gym. I couldn't do gym, I couldn't do a cartwheel, play volley ball, couldn't run, I would trip over my feet and fall, got laughed at. I actually failed gym!
I can't add, subtract or multiply. I couldn't count - I would be distracted by background noise and lose my place and have to start all over. Was put into the slow reading classes. Was labeled as the dummy.
I would stumble over words if I couldn't pronounce them. I couldn't remember what I tried to read, I would get lost in the words. So I got "F" on book reports. My writing was very sloppy. But my printing was excellent! The only classes I enjoyed so much were my Art Classes. I had a lot of art classes, ceramic classes & craft classes.
I graduated by the skin of my teeth. I would ask my parents what is wrong with me, and they would just tell me I had a learning disability. There was no testing for this (SPD) in the 50's. So I had to struggle and try and deal with this disability on my own.
This is the Sensory Processing Disorder part...
My mom didn't know how to handle me, I guess she got very frustrated. Out came the loud pitch sound coming out of my mom's mouth. She did a lot of screaming at me - the tone of her voice would hurt my ears - I remember I would hold my ears and yell "blah-blah-blah" till she stopped. I remember mom trying to dress me in the mornings - I would be trying to stretch my pants out, my shirts, my socks. Nothing felt comfortable. Like everything was too tight. I remember her telling me she was gonna send me to a nudist camp cause I couldn't stand the way clothes felt on me.
I couldn't listen to her when she talked because her voice went right through me. She would always tell me - you only hear what you want to hear. But I didn't hear all she was saying cause she was using that high pitched voice.
So if I didn't understand something - she would beat me up (Like that was gonna do something). She hit me with belts, wooden spoons, anything she could get her hands on. She used to hit me so much that I started to laugh and tell her it didn't hurt and that she was wasting her time by hitting me.
I remember her grounding me for not eating dinner because I didn't like it. She would tell me I had to eat it for breakfast if I didn't eat it. And if I didn't like what was for dinner - I couldn't have anything else to eat. So I would be locked in my room, and only to come out to eat the dinner.
I had nothing in my room, no tv, just a clock radio. I listened to music all the time. But then I would get really thinking about why I was put in my room and start to cry - cause I didn't know what was happening to me. What did I do wrong? I never knew the difference between wrong and right.
So I used to cry - put myself in a ball - and rock back and forth - and drool. Bang my head against the wall. Look for something to cut myself with to stop the pain she was giving me. I remember crying so hard I would get a headache.
Now that I look back - I can't believe how she treated me. She was so mean to me. I bring this up to her - she told me I made it all up - She didn't do that to me - I'm crazy. So for years - I tried to block this from my memory that this never happened, but it lingers. Because I know it happened. My mom actually made me think I was going crazy!
I remember she used to put rags in my hair for bologna curls, I remember them hurting me so bad I would cry. She told me it was my imagination. It was all in my head.
I remember hiding in closets when I got home from school, scared to death to see my mom - was afraid she was gonna hit me.
I'm very messy, can't get anything organized. My room looks like a bomb went off in it. I try to organize it the best I can, when I can't find something it goes back to messy. I have a problem with my stuff, if it isn't out in the open where I can see it, I don't remember I have it.
I hate rides, merry-go-rounds, roller coasters, even in a car - I get car sick; still do to this day. I can't handle heights - flying in an airplane. Being in a boat in the middle of the ocean scares the heck out of me.
My Senses
MY EARS are super sensitive to sounds - loud noises, tones of voices - hurt my ears and actually hurt my head as well. I can actually hear noises from far in the distance, that no one else can hear.
Easily distracted - like when I am trying to get ready in the mornings. It has to be Quiet! No background noise - no talking, no tv noise, the only thing I can have on is the radio, anything else, I lose my concentration in what I am doing, and I run slow. Have no concept of time. Then I run around with my head up my butt trying to get ready. I am always late for work, appointments!
MY EYES are super sensitive. Fluorescent lights are too bright - actually hurt my eyes, make them tear, instant headaches. I actually wear my sunglasses in doctor's offices cause the lights are too bright, make my eyes tear, instant headache. Besides that my eye sight is real bad - I wear contacts - glasses are coke bottles. I am near legally blind (-18 is me; -20 is legally blind). I was picked on in school because I had thick glasses, was called 4 eyes.
MY NOSE is super sensitive. I get nauseous from certain smells - feel like I'm turning green; Cooking smells, some perfume smells, New car smell is the worst, especially the leather seats, scotch guard too. When I am in the store, before I can buy body wash, shampoo conditioner, soap, dish soap, fabric softener, I have to open and smell everything. I can smell something that no one else can smell.
TOUCH – I don't like to be touched. Except with my husband - I crave his touch. Anyone else, I move away from. When family goes to hug me, I move away. Unexpected touch or someone just brushing against me, I freak out. I don't like anyone touching me that I don't know.
I can't touch the cotton in a medicine bottle - "Skeeves" me out - feels worse then scrapping your nails on a blackboard. I have a difficult time opening child proof things - I just can't open them. I get very frustrated and I throw them. I laugh and say, "they Karen proofed this."
CLOTHES – have to be rinsed with fabric softener - or I can't touch them at all. When I go shopping for clothes I have to touch everything. If it doesn't feel good in my hand, it is not gonna feel good on my body. Still to this day a bra is very uncomfortable - I hate them, first thing I do when I come home is take that sling shot off!
I hate shopping, I hate trying things on, I have no patience. Only pants I can wear are spandex with a little cotton. But the waist has to be loose or I stretch that out. Just don't like the feeling of having anything tight around my waist. These pants are hard to find, I usually find them in the work out sections of the stores. Yoga pants are good as well.
My Shirts ~ I live in T-shirts with the collars cut out. A collar feels like someone is holding my neck. They have to be soft, and if they are not, I soak them in fabric softener for days. I don't like anything touching my neck at all. And they have to be a size bigger, I like my clothes loose. I can never get in to fashion, cause of these issues.
My socks ~ have to be soft, loose, the elastic can't be too tight. So I have to check all the elastic in all the socks I buy. Gotta make sure there are no fuzz balls in them after they are washed. That freaks me out. Lotion on the toes works well for me. The toes can move freely and it feels better. My sleeping clothes have to be loose night gowns. My shoes - I haven't found any real comfy ones yet.
Temperature
I have big problems here...
Winter – I feel colder than anyone else does. I mean I freeze, my hands are always cold. I really can't handle layers of clothing, very uncomfortable. Can't tolerate a hat on my head at all. Sleeping, I need 2 blankets on in order for me to sleep. I need to feel the weight on me.
Summer – I sweat to death. I have over active sweat glands, I sweat so bad looks like I just got out of a shower. I get so hot, it feels horrible. I have to put my head under ice cold water to cool off. Weird that I can't tell that the water is that cold on my head. I also need to have weight on my legs when I sleep.
Motor Skills
I was never able to drive. My reflexes in my feet and legs don't work properly. I couldn't get my foot off the gas fast enough, so driving just wasn't for me. I learned to walk, take a bus, cabs, riding a bike to get to where I have to go. I am very clumsy, I trip over my own feet, trip over sidewalks. up steps, walk into things, bounce off of things, drop things, break things.
I have problems trying to find something. I will look in the same places several times. Take everything out, put it all back, 20 minutes later I will do the same thing. Drives me nuts.
I have a problem with my clothes - they have to be all out in the open. If they are hidden I can't find them, or I don't remember I have something.
I can't juggle many projects or tasks at once. My brain gets overloaded real quick.
My Body
SKIN – All my life I have had skin problems, bad acne, cysts, boils, ring worm, eczema, impetigo, warts, hives. I also have a problem with medications. Allergic to mostly all antibiotics they also cause meto be sick to my stomach. They make me feel like I'm dying, I get hives all over my body. Intolerable for me.
TEETH – Very very bad. Had my first root canal at the age of 13. Lots of cavities, teeth breaking, soft teeth.
BODY WEIGHT – Been slightly over weight since I was a kid and could never loose it. My weight is weird, I am only heavy in my tummy and butt.
As I got Older
When I was 16 – I started drinking, I was getting in to Bars and used to hang out in local old men bars with a gal friend of mine; the old men would buy us drinks.
By the time legal drinking age came around – I was 18. Drank and experimented in lots of drugs. Had very very Bad trips from Acid! I thought I was dying. But I did it like 7 times, cause I wanted to feel what my friends felt. But never did.
When I hit my 20's – I was so depressed and I couldn't deal with the struggling, and the way I felt. It didn't feel normal to me; I knew there was something wrong with me, so I tried to OD on pills. Several times. I wanted to Die So Bad - But, I didn't have the guts to slit my wrist.
I taught myself to pick things up with my toes, when I was bored.
I lived all my life as a loner. I had lots of friends, but I would rather be in the company of myself with my radio. Now it is the computer. I am self taught.
Getting the Laptop
When I was 43 – a good friend of mine came over and dropped his laptop off and said to me "learn it". I laughed. He was serious. He said, "Learn it" and left.
I had no idea how to even turn this thing on – never mind learning it too. That PC sat there for 4 months; I wasn't gonna pick it up, I didn't want to become ADDICTED. So by the 5th month I was curious. Figured out how to turn it on, clicked on all these icons to see what they did. Called my friend and asked him what this thing did and that thing did. He said, "There is a little help button on the page somewhere, you go and find it and read what to do. I'm not helping you".
Well I was so ticked off at him for that I was like - I'll fix him, I'll make his head spin on what I was gonna try and learn.
Well along comes 6 months - he calls and wants it back, by this time I was addicted. Couldn't stop going on it - I wanted to kill him. So he took me to buy my own.
Adventured into a chat room, and typed and typed to people I didn't know. And this felt good, it was like my own therapy. Made a bunch of really cool chat friends, and some I met and some we keep in touch on the phone. Chat rooms are not all full of "wackos". The ones I visited were mostly full with people that are bi-polar, have disabilities, dyslexia, and people that crave attention.
I have been a chatting for 6 years now, and I enjoy talking to all sorts of people. I have helped so many people with basic computer problems that were once like me. FOR FREE, because I know what it is like to be there.
More About Me
Well, this is most of my life. What I had to live with all by myself. Sorry so long - could be longer - but I decided to Stop. Hurts remembering things that gave you pain.
How I release pain? Through my Art, Crafts, & GIVING to others! I release pain by getting TATTOO'S. I have 7 now and I want more. I enjoy the tattoo pain, and I love art. The pain from a tattoo releases pain from within!
About my family – I analyzed my Family. I got married and now I am outside looking inside the box. Not inside the box looking out.
My mom is always yelling at my dad, she puts him down a lot. My dad is very quiet, sits back and holds everything in. But he is there for you if you need to talk about intelligent things. I am not smart enough for that.
I have 2 sisters – One is 40, the baby, the other 47 – the middle. They are both selfish & greedy. The middle one likes to be in control of things. Expects people to do what she wants or says. She is also very spiteful.
Me on the other hand:
I'm a giver, not a taker
I'm a giver to anyone,
Whether it is my shoulder, my ear, my art,
A dollar, or a special gift,
I give to where the gift is needed or earned.
I am a helper to others.
I am friendly, i can make a friend wherever i go.
I'll talk to anyone.
I love to see people laugh or smile
Because of me,
What i did, said or gave.
Love to see the smile and their faces light up
When surprised.
Makes my heart smile.
OK, I am done now. I hope this helps. It drained my energy to bring this all out in the open. I never shared so much of my life with anyone before.