A Teenager's SPD Journey

by By Mari

I was diagnosed with this disorder at the age of 5, along with hypotonia. I'm 14 now and can honestly say I don't clearly remember most of my symptoms or treatment. What I do remember is being different from all the other kids and knowing it. My mom could never figure out what was wrong with me until one day the gym teacher brought up all the problems I'd been having in her class and suggested looking into a diagnosis.


I received occupational therapy for quite some time. The little I do recall includes constant over annoyance from clothing tags, sock seams, loud noises, certain tastes and smells, balance issues... I just finished reading the checklist and was able to mentally check off over 3/4. I never understood my problems or realized they had such a large impact on my life. I don't like bringing up my problems, but today decided to tell a close friend of mine about my disorder. When this website came up as a result, I was surprised to see all the problems I thought were normal. It turns out sensory integration dysfunction has continued affecting me so much throughout life. I thought my problems from this were limited to my early childhood, the inability to wear jeans until fourth grade, and now, in freshman year, my still severe problem with loud noises. The descriptions are so accurate of how I used to, and sometimes still do, feel throughout the day.

This is an excellent resource for both parents and those who have sensory integration dysfunction. I've always had issues with hypersensitivity, and occasional hyposensitivity, but I never knew it was part of this. It was so difficult for me to focus on friendships with all the other noise and additional distractions around me as a little girl. I was so variable; one day I was being a daredevil and the next I was tripping over flat sections of a sidewalk. I could hear horribly loud noises no one else could, and had a tendency to get headaches and weird stares for hearing noises one one else did. I reacted oddly when people touched me and was an extremely picky eater due to smells and textures I hated. Even vision problems affected me.

I never felt normal; I was always apart and still have some social difficulties. I fear rejection; I experienced so much because I was "strange" that I have difficulty trusting people and admitting anything to them. However, I have improved over time.

I have wonderful parents who were able to get help in time and a fantastic set of friends who care about me no matter what. Children, teenagers, and adults are all impacted by sensory integration dysfunction, but we can all overcome its problems with help! Please continue working on this website, I know it has helped me realize my problems but also the fact that I am not alone and that there are people out there who want to help.

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Nov 27, 2012
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Tactile disorder
by: Anonymous

My little girl has had clothing/shoe/sock/bathing suit issues since she was a toddler but we always thought she was just being dramatic but the older she got the worse she got,we have been thru OT, meds from her child psychiatrist, you name it!!!! she is 10yrs old now and has not gotten anybetter as a matter of fact her clothing issues have gotten worse :-(

Jan 19, 2012
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Same boat
by: Madeline

Finally another teenager!! I've always struggled with this too. My parents thought I was autistic for awhile, until SPD came up. Social problems harm me as well, I don't like going out with friends and in turn they are beginning to ignore me. Do you have excessive migraines? I havent found any link yet, but I feel like there is one.

Jan 08, 2012
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Sensory 13 year old Daughter
by: Anonymous

Thanks for sharing your story. I have a 13 year old daughter who has had sensory issues her whole life, mainly involving clothing. Loud sounds, etc don't bother her,. She has had problems with balance but did synchronized swimming competitively for 5 years and the swimming really helped her. She now does speed swimming. She had OT when she was about 6 as she did have problems with coordination and some other things. She is very bright and gets excellent grades, but she is often sad because she doesn't feel she fits in at school. She hates wearing jeans and that is what all her friends wear - they comment on the fact that she never does. It is hard to get dressed up and look cute when you are wearing sweats every day. She is also very picky about underwear and there is only one style she will wear that I can find in one color at one store. How have you been able to wear jeans? She has worn them a few times but freaks out when she puts them on - I try to remind her that once she gets used to them (about half an hour) she can usually handle it, but she can rarely get that far. Is there a particular brand or type of jean you have found to be acceptable? I want her to feel good about herself. You are very brave to share your story and I'm sure that as you (and my daughter) get older, you will learn more ways of coping with this.

Thanks,
Kim

Sep 07, 2010
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Late Reply (sorry!)
by: Mari

@Anonymous: I am VERY sorry I haven't responded until now, I'm afraid I haven't been checking up on my computer until recently. I hope that everything went well with the shorts. Most of my therapy was done early, but I do remember there was a special set of brushes to run over my skin. It really bothered me at first but it helps with the way you respond to sensations on your skin. There were certain types of pressure and textures that my mom and my occupational therapist helped me get used to. I would suggest looking into an occupational therapist if there isn't one already.

@Rachel: I'm glad my story was helpful to you. I know it can be difficult for both parents and children, but with help everything does get much better over time. I hope that your child is able to make accepting friends just like I did. Those are the people who really matter, the ones who care for you despite any quirks or issues.

Jun 11, 2010
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Wow
by: Rachel

I'm so glad you came to this site and shared your story. The problems you described matched my daughter's almost exactly! She is five and just recently diagnosed. She cannot wear jeans or anything that isn't very soft and smooth. At times even sitting on the couch seems to be unbearable without a soft blanket under her. She also fluctuates from day to day, sometimes she is bouncing off the walls and can't get enough stimulus and other days buckling her seatbelt is hard for her to do and she's scared to touch anything. Sometimes raindrops falling on her skin seem to hurt her and birds chirping are too loud. She has some seeing problems too which is the hardest for me to understand, but I try.
I know she feels different from her peers too, and it breaks my heart to watch her being judged by strangers. I defend her as much as I can and I try to teach her that its okay to be different, that their are all kinds of people in the world and thats a good thing.

Its very helpful to me to hear stories like yours so I know their is hope. It also reaffirms that SPD/SID is real, despite what outsiders may think! How could it not be when so many of us share stories that are so similar?! Thankyou for sharing your story.

Jun 10, 2010
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Help
by: Anonymous

Anonymous
Thank you for sharing, I am so interested in what helped you with your sensitivity. I have an 8 year old granddaughter with severe sensitivity to clothing. What in your opinion would help her to wear underwear !! She will only wear a dress and t shirt. Although this Saturday she is going to try to wear a pair of shorts. Your input could really help us because its hard for us to understand how she feels. Bubby

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