What life is like.

by Madison
(Georgia)

I am twelve, almost thirteen. I have sensory processing disorder, asthma, arthritis, hypermobility syndrome, sjogrens syndrome, hip dysplasia, and possible lupus. My SPD was discovered when I was about seven because I wouldn't eat and was dangerously skinny. I didn't tell my parents about my other symptoms (I have almost all of them) for SPD so they thought I only have the taste part. My parents now just figure I have grown out of it but my other symptoms have gotten severely worse.


People look at me like I'm a freak when I'm in a loud room. I cover my ears and curl up. Vacuum cleaners, dogs barking, yelling, and other noises freak me out. Once I told my dad to stop vacuuming when I was close to tears from it and he started yelling at me to respect him more which made it all worse. I can't pay attention in class so all of my teachers naturally think I'm ADHD. I'm in all AP classes but I can't pay attention at all. I run into things a lot and constantly trip and fall. I say things without thinking and my handwriting is horrible. This year was the first time I have ever told my friends about it. I talk way too loudly and touch everything nearby. I don't like shorts or skirts. I can't eat corn or green beans with a fork or spoon. I tip over things a lot in stores and my mom is embarrassed by me. The other day my friend had mashed potatoes and he knew I didn't like them so he put them near my face and I freaked out and slapped them out of his hand. I can't be in a small space or I get uncomfortable. That's only a few of my symptoms. I have lots more,

I cry almost everyday because I can't handle what's going on around me. I get called freak and weirdo in school. I was mistaken for a special Ed kid once in a GIFTED CLASS. I haven't told my parents because they haven't mentioned my SPD in years and I don't want to bring it up. I'm working on it everyday and doing my own OT in home. My friends try to help. The other day a juggler came to our school and when everyone clapped I covered my ears and started whimpering. Syd leaned down and said are you okay. I let go of my ears and bared the sound and now it's not as bad. I don't know what to do and I had four or fives on almost every thing on the checklist.

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Jul 25, 2012
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Medical Issues
by: Anonymous

As a 50 yr old with Sjogren's I give you kudos for all you do. Do not be too hard on your self. You are a gift just as you are. It make take a while to find your niche in life, but when you do, there will be no one who does it better!

Jun 07, 2012
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Madison, you are great
by: Robin

Madison,
You are so well spoken. Thank you for sharing your private story. As a parent, I would urge you to share your post with your parents. It may change the way they deal with your symptoms. Please let them see it! And, please try to connect with one or two people that you can talk to about your feelings when they become overwhelming.

Jun 01, 2012
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what life is like
by: marjory scotland uk

Hi, how smart are you that you found this web site. I am a mother of a 8yr old boy with reduced proprioception and aspergers syndrome. I was looking at all the names you have and conditions, yes you have thesebut that is not who you are you are a young very intelligent girl. I know if you spoke to your mum and dad and even showed themwhat you have written they would be their for you. the first book i read about spd was Thinking in Pictures by temple grandin. Excellent.
Please get your mum and dad together and speak, write them a letter. You will have help.xx

May 31, 2012
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Courageous
by: Janice

I am so happy you were courageous and posted today. It helped me understand what my 7 year may be going through now...it is hard for him to tell me what is going on, but sometimes he says that his angle weights make him calmer, and that he doesN'T have one of his "problems" any more. I would love to read another post from you detailing all of the great things about you and your life...even though it may be hard to think of 100 things, try to. It sounds like you are very, very intelligent. Would you be comfortable posting about your gifts to encourage others who have SPD? Thanks again for your post!

May 31, 2012
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RE: what is life like
by: Lyn

Hello! I know how you feel. Growing up is not easy and experiencing SPD certainly is not a joke. Anyway, i hope you tell your parents a little of what you are feeling. maybe they will at least understand. i know they will. i am a mother to three boys. though they are still young, i am hoping that they will grow up happy and surrounded by friends and family. Regards and take care. Hope you find the support you need.

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