A 20 year old girl's story.

by Camille
(Austin, Texas, USA)

When I came upon this site, I was so glad that people had researched about it since my mother wondered why I wouldn't eat certain foods, drink from her breast when I was a baby, and was picky with clothing. It wasn't until I was in sixth grade that we found out what I had.


My school had a special ED teacher that had a same just like me and started giving me therapy. She made me wear tight, riding shorts that I absolutely hated. It felt like panties that were unbelievably tight and it was horrible. I sat down most of the time when I had t go in that room. They even gave my mother a brush that was prickly and rough to go against my skin.

That didn't work at all.

Before I knew it, my mother took me to a real therapist and they gave me medicine. It didn't work for me since I felt the same. I'm being honest here too. So, my mother canceled it.

Now, what really shocked her was when I was in the marching band. The material of the pants were... Think of starchy pants with a bit of a silk feel to it. It didn't feel good at all, even though I wore shorts and a shirt underneath. The black pants (we had black and white) were even worse since they were wool. Despite the nagging feeling and my brain telling me to take it off and "oh how gross that feels", I did it because I enjoyed playing in the band. It was fantastic marching and playing with them on the football field in my freshmen year in high school in Allen, Texas since there was nothing like that.

The concert dresses? Could of sworn they snuck a corset in that and they felt like the pants too. All I did was slip on a long, black silk undershirt and it was all good. It felt extremely odd though but once I started to play my clarinet? Forgot about the feeling entirely.

Now, that's only to what the good part was. Yes, I did have pain and angst. Maybe even more. One day, during middle school year, my mother told me to clean my room and practically blew up on me. Yelling at me makes me cry automatically and because of her doing that all the time, I cried even in school. I'll get to those parts later.

So, I decided to say, in a very calm way, to please leave the room since I always cleaned my room with music and do silly dances while doing it but my mother says, "No, make me." I started to get upset and asked her again. She says the same thing to me. So, I started to cry. She hates it when I cry so she starts yelling at me. Whenever I cry, it becomes loud and annoying and I can't help it.

Before I knew it, she started slapping and hitting me on the legs, butt, arms, and even my face. And you know what the twisted thing was? She thought I would stop crying when she did that. She kept on going when I wouldn't stop crying and shouting in pain. I'm crying right now at the memories of it while typing this but I want to get this out to you parents of children with this disorder.

Do. Not. Hit. us.

Yes, it is discipline, but don't hit us like my mother did. It makes it worse and I felt so helpless because she was hitting me with her hands and it hurt. After she hit me, my skin was red from it and my throat was dry and hurting from screaming.

During this, my brother had heard what was going on, and he's two years younger than me, and started to cry himself while telling my mother to stop. She told him to shut up and would continue to hit me. My brother called my father who was shocked. My mother didn't wanted to talk to him (she's on a very high horse by the way, which makes me so sick) but after it was done, I heard her talking to my father.

The words I heard from her and from that day lost my whole respect to her. She knew that I had my disorder but she doesn't know how painful it is. She wants everything to be perfect and all her way.

They don't hit me now anymore because they use the "if you don't do this, I'll take this away from you", which works even better. There's no screaming at all and it made me pass high school with a B average. My thing was, "you fail, no computer." I will admit that I love my computer a whole lot and I'm so glad that I finished high school.

But there were times that my mother would get onto me over and over to get a job. I don't like to talk that much because I have an odd way of speaking and people judge me a whole lot because I dress like a tomboy. I'm not going to lie but it makes my parents happy that I'm not girly with all makeup and high heels. Oh my goodness. High heels... Graduation in high heels was a nightmare. My feet were killing me after wards.

But, back to the topic, I have applied for jobs and so far, no one wants me and since my mother got a job in Miami, Florida, since I'm not in college (I tried online and it didn't work out for me) and have no job, I help around the house with the chores (dishes, vacuuming - I go over the vacuum a long time ago - laundry and cat litter - the cat can scratch pretty hard, haha) and I don't fight about it since it's easy to do and it will help me further on in life.

As for what I can wear now. I will not wear jeans, other types of clothing, and eat food that looks gross (mostly veggies) but you know what? That's what makes me, me, and I don't wish to be like others and fit in with the crowd.

So, yeah, that's basically it of what I can come up with. If you have any questions, don't be afraid to ask.

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Jan 19, 2009
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what can I do?
by: paul

It's rough because people often don't understand what it's like when one of these conditions isn't the victims fault. From the adults perspective they're frustrated and it's only with a LOT of struggle do they come to realize their child isn't doing it on purpose.

You have to be dramatic and make them know and practically scream that this isn't my desire I don't want to be a burden I know I am but what can I do? What can I really do?

Jan 08, 2009
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Response
by: Camille

I'm glad I could help.

I admit, that there are errors in my post since I have a terrible habit of not inserting a word, comma or missing something entirely.

Hope you have a great New Year as well!

Jan 01, 2009
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thanks
by: Anonymous

Big thanks to you, for your response, keep writing I think it heals us and helps other. And maybe teaches people to be more understanding of others needs. I really had trouble reading your post ,it made me very happy that I chose a form of discipline that does not cause pain. It may not be the right one, but I know that my child's memory's will be less painful then yours and I am hoping the best for you, happy new year.

Dec 30, 2008
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Responses
by: Camille

@Jessi: You're welcome. I can see how hard it is for parents to have a child wit SPD since it's frustrating to know what they feel.

As for the kicking, it's him protecting himself since he feels uncomfortable by being bumped, getting too close, etc. When I think about it, I did that with sheets by kicking it away from the bed when I got too hot since I wanted it gone quickly.

@Anonymous: No problem. I wear silk underwear - or satin - and use pads that are by Always - Ultra Thin.


Dec 03, 2008
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Thanks for sharing
by: Jessi

Thank you for sharing your story and I'm so sorry that you've struggled so much with your SPD. My son will be 5 next April and was diagnosed with SPD when he was around 3 1/2. He is very frustrating to deal with, but fortunately I learned very early on with him that physical punishment is not very effective with him and seems to hurt him so much emotionally that it's nearly abuse to him (although I have never hit him in the way you described - only spanking).

I have learned, that just like you described, giving him the option of, for instance, doing what I tell him versus going to time out works very well. He struggles with eating, but I have seen a vast improvement over the last year since he has been in therapy. He has a lot of trouble with acting out in school - lots of hitting and kicking - but I really believe that it is because of sensations inflicted on him by other kids (getting to close, bumping him, etc.) that causes a violent reaction in him.

We are working on coping methods, deep breathing helps, but it is hard for a 4 year old to control such deep and strong impulses. I hope that you will find coping methods that work for you to help you succeed in life.

Thank you for sharing with us parents out there what it feels like to have this disorder. Our young children are not able to articulate it well, and I'm sure that many of us our guilty of losing our tempers sometimes, I know that I have. I can't imagine how difficult it is for my son, and you, just to make it through life every day. Good luck to you!

Dec 03, 2008
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I am a 12 year old girls mom
by: Anonymous

Thanks for sharing,and wonderful advise.I do believe you could help me out with a question if you don't mind a personal one.

My child is soon to be starting her period. She is extremely sensitive to underwear and pants and shirts and teeth brushing and showers.I am fearful of the sensation she will experience with a sanitary pad.

I have trouble getting her to wear different styles of undies because of her sensation.ANY ADVISE how can I help a child who cant stand the feel of clothes wear a sanitary napkin.

whats your experience you remember if you don't mind sharing.I appreciate your time.

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