No one ever understands me to this day.

by Melinda Bartlett
(Florida)

I'm a 20 year old female. I was diagnosed with Sensory Integration or Sensory Processing Dysfunction in 4th grade. Let's just say SPD for the time being. Anyway, My mom was telling her friend about how I cringe when she raises her voice. I would refer to it as yelling and draw myself inwards and back up. My mom was concerned because she thought I was being abused in school.




Her friend has a child with SPD and he is a Hypo-sensitive. So since I had what seemed to be the opposite, she gave my mom the "Out-of-Sync Child" book. Very soon an "OT" came out to watch me. She observed me in a quiet classroom setting for 30 mins. Anyone who has SPD or a child suffering from it will know that is NOT enough time or the right setting to see if I have a problem. All she noticed was that I could not hold the pencil correctly, or use the right input for writing. (You know, too much pressure, or not enough. Never just right.) So she gave me some pencil grips, told my mom I had this disorder...and that's it. She decided I didn't need to have any therapy or any treatments.

Little did she know, I could not ride a bike at all. That I cringe when a noise is loud but not too loud for normal people, or repetitive. I would never be able to look up outside in the daytime without squinting or covering my eyes. Tickling was and is TORTURE for me. When being poked, I feel the sensation almost a whole minute later. The smell of vinegar and other common things like cooking vegetables made me nauseous. My clothes did and always bother me, I hate tags and anything touching my neck. I have to constantly figit when wearing a t-shirt and jeans. I wore so many dresses as a kid, I even slept in them. I get pressure hives in the cold weather and sometimes from socks and pant lines. I used to take my shoes off multiple times because I did not like where the seam lied. I would call dim lights "fuzzy lights" and insisted that it hurt my eyes, and that they had to be either on or off.

I was picked on by family and called the mummy when I slept, because I had to wrap blankets around myself, or use a sleeping bag, which I did often as a kid. My sentences and thoughts never come out right. I have trouble getting an idea or a joke out, and am often perceived the wrong way. In elementary school and some of middle school, I used to write out my numbers wrong i.e. "6ix" "8ight". I could not distinguish the number and the word. I have trouble with similar words, on paper, and verbally. I trip over my words like I do


my own feet. I am ambidextrous to an extent. I can use my left to write just not as good as my right. I use the left side of my body for everything else, like golfing, skating, boarding etc. I can't look people in the eyes, I have trouble socializing, I feel awkward often, I'm constantly being judged by my peers cause they think I'm just being winy.

Life for me is difficult. My mother didn't tell me I have the disorder until around middle school. I didn't take it seriously, or even believe it because I felt like I was just weird or different. That one weird girl. I felt like life shouldn't be so hard. Simple procedures should not take so much effort. Normal people don't have problems like this there must be something wrong with me. I thought I would never become 100% comfortable, EVER! It wasn't until after high school that I really noticed I had a problem. When I didn't wanna go to college. I didn't wanna get a job. I didn't wanna drive. Or even interact and do things with friends. I would feel extreme discomfort from other people's houses. The loud music, the noises, the smells. People thought I had extreme Anxiety (which I do, but wouldn't anyone with this disorder experience Anxiety living like this?), they thought I had ADHD. Only when I was reminded of having SPD did I realize that for my benefit, I should accept it. I should look into it for my health. So I did, and all the pieces slowly came together. This list is like my life handed to me on a platter. (Well, the hypersensitive parts) I really like this site, and the deeper I look into the community of SPD, the more secure I feel about myself.

So I would like to know from other parents and people suffering, is my case bad enough to need going to an OT sometime? Or now that I'm an adult, should I just try and adapt to my surroundings, and only place myself in environments suitable for me? Is there any way to make tasks like sitting at a computer at my job, easier? Will I ever be able to tell people to stop humming, tapping, cooking smelly foods, touching me? Is there any job safe from that? I have even told people that I have SPD. Only few of them sympathize or even understand my actions. My boss thinks I have high potential and luckily keeps me around. She's aware of my disorder, yet thinks a lot of it is in my head. I wish people could just step in our shoes for once. My family, boyfriend and close friends are aware of my disorder too, and they try to cooperate as much as possible. So shouldn't I be fine without seeing a therapist? Do you really think I legitimately have this disorder?

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May 30, 2011
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Your Quest: My 3 year old with SID
by: Kenny

Sounds like you are a fighter. You are not weird at all. You are smart, brave and I believe are going places. My daughter is almost 3. She was diagnosed with SID. As your story went Angela was only looked at by the Neurologist for less than 30 minutes as well and didn't display 1/10 of her symptoms. So I received the OT prescription and haven't even gone to an OT yet. Frankly because I am upset at the short evaluation and have little faith in its accuracy.

Angela toe walks 70% of the time, hates and despises teeth and hair brushing, shakes her head only while running on a field until she falls, drops to her knees on purpose often, is shy with every one except us, will want to use toys and playground type equipment in ways they were not indented to be used, will not sit in a circle of kids and answer ?What?s your name? She will walk away and stay in isolated in the kitchen while everyone else is in structured play. She has poor balance, very wreck less and clumsy and little body awareness. For example if you grab her ankles and hold her upside down and try letting her go she won?t try and use the muscles in her neck to roll back. She simply keeps her neck loose and has no survival instinct to tense up and roll back. It?s limp so if she was to try this alone would most likely break her neck. Well I could go on and on but it?s late so please stay in touch. If you want to see my Angel please contact us through her channel. It?s www.youtube.com/user/angelachannel
Good luck to you and let us know if you do se an OT and the outcome.
Thanks,
Kenny

Jan 21, 2011
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always worth a try
by: guest

I think it is worth a try for you to see an OT. Like the person above said..try to find an OT who specializes in SPD and has experience with adults.

SPD is difficult to treat in a 'school setting'.

It's too bad the OT did not notice and make accurate observations or even interviewed your mom before coming up with her conclusions, or else you could have gotten some treatment outside of a school setting. I think you should definitely try now, its never too late. It also sounds like you have learned to make modifications and accommodations in your life, and that is part of dealing with the disorder too. Good luck

Jan 19, 2011
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Getting Help
by: DebbieKinIL

Get your physician to write a prescription for an evaluation for SPD with an OT. Then search for an OT that you feel comfortable with and that has experience with SPD in children and adults. Only an evaluation done by a OT will get you a diagnosis- also talk about related disorders there too.

You are on the right path- identifying your problem and searching for ways to better deal with it. There is lots of help available and you will find it.

Try going to this site for more info especially adults- the SPD International site and Forum -
http://www.spdinternational.org/forum/



Jan 16, 2011
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SPD Strong Symptoms
by: Anonymous

Hello Melinda your story feel very real, but because they are familiar with SPD.èd of children have some knowledge of the various symptoms. the diagnosis not can be made in a short time, we must listen to the patient and what is stated. Perhaps in addition to OT, you should refer to a psychiatrist. Find all the possible ways to improve your life, you're in time for this. best greetings.

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