Does anyone know....

[Nataly]

If dyslexia,ADD-ADHD, or SID (Sensory Interegation Dysfunction)(possibly Austism?) are common among people with Spina Bifida?. I have seen a lot of posts discussing people with ADD or having attention-memory problems. I don't have problems with memory or attention. I ask about the SID because some textures or clothing or loud noises really bother me, as weird as this sounds. Like if people are clapping really loudly together I can't stand that :connie_mini_lalalal. Is anyone here quite shy, (maybe or not) due to their SB?. When I get into large groups, I tend to get quiet. I kind of "shut-down", because I think everyone is looking at me. I do okay at school but, anywhere else I it's hard for me to feel at ease.
Maybe it's just me?:sign0013:
Thanks,
Nataly

[Jwm]

I have issues with memory, if i write it down i can remember it (maybe not on time but....lol) I dont like loud crowds either

[XoBLoNDiE85]

I dont have SB and I use to be VERY SHY and quiet around large crowds...not anymore i out grew that around the age of 16-17. I would guess its just personality...idk???

[jellolegs23]

ADHD and ADD are quite common with those who have Hydrocephalus. For those with Hydrocephalus there is a learning disability called the Nonverbal Learning disability. This website can illustrate the strengths and weaknesses those who have the learning disability can have http://www.greatschools.org/LD/other-disorders/nonverbal-learning-disabilities.gs?content=907.

By the way, loud noise is usually a problem with those who have the disability, it is not just you. This is all quite common in the Spina bifida/Hydrocephalus population. But to get a specific diagnosis of your specific problems, I would encourage you to seek out neuropsychological testing that can be performed by a Neuropsychologist.

[LillyPie]

Lilly has issues with loud noises. Thunder storms really freak her out, someone told me it was normal and common at her age but the way she acts is not just like she is kinda scared.. her heart races and she is terrified and asks if we are going to die, at this point if she sees dark clouds in the sky she freaks out and clings to me like there is no tomorrow, I know it is because of her sensitivity to sounds. Any loud noises startle her.

Oh and textures have been somewhat of an issue. Food textures when she was smaller. Clothing textures also, she says certain clothes bother her and she changes her cloths like 5X a day, she says because the inside itch and bother her, Ive checked the insides of the clothes but there isnt anything there.
I'd have to say its not just you and that you are definately not alone.

Jellolegs, NLD sounds a lot like Lilly. Thanks for the info.

[dahliafaolan]

I'm pretty sure the issues with loud noises are pretty common with Spina Bifida. Ever since I was young, there have been certain noises that even at soft levels, hurt like hell. To this day, I cannot stand the sound of silverware rubbing deliberately together. When my boyfriend has to sharpen anything, I have to leave the room. The noises seem to be sort of random, but mostly in the higher registers.

I've always thought that food textures was an issue related to my Spina Bifida, but I always thought my other texture issues were just my personality. My mom hates going to crafting stores with me because I will go down to the fabric and yarn sections and just spend like a half hour touching the yarn. It's worse when I'm actually trying to pick one of them because I refuse to work with certain fibers because they itch and I will not use a yarn unless it feels good in my hands. Also, one of the major factors I take into consideration when I buy clothes is the texture of the fabric. If I don't like how it feels, I won't buy it, no matter how cheap it is or how good it looks on me.

[Summer25]

Lol I am like Dahlia. I'll touch anything I get my hands on. Although my mom is the same way, so I always thought it was because of her. I also never have been diagnosed with ADHD, but do not sit still at all. Even I can't do something I'll move around in my chair. If I can't move, I'll talk to someone...lol. I had issues with noises as a child, but not much anymore. I used to go to a lot of concerts, so that stopped the noise issue fairly quick. I am also shy, but really who isn't at some point? Once I get to know you though, I am ok. I also have some OCD tenedencies. When I go into work the first thing I do is go through the signed stuff that I keep to make sure it is in date and alphabetical order. The girl that does it while I am not there doesn't keep the dates in order and it drives me crazy. I also have to check things several times a day. Other then that I am ok...lol.

[Dodger67]

I have no issues like that.
I don't have hydro or chiari, so maybe one of them is the common factor rather than SB as such.

[eng188]

I'm hurrying through this thread, as I need to leave. But basically I am a T-2 incomplete myelo, and am diagnosed with dysnomia (an LD), and was apparently tested fro autism way back when, but was negative.

As far as socialization goes...ho boy. Normally I hate people. Hate to say it, but I do. But when I find a person I like that seems to like me back, I get a bit clingy. Ideally, I like small groups, but NOT one on one, and not huge crowds so much.

As far as loud noises, sirens from fire trucks, and buzzers in basketball games used to scare me like crazy as a kid, to where I'd hold my ears in such situations. But now I'm perfectly fine. In fact, emergency vehicles fascinate me. Plus, I live right by two hospitals and a city fire station, so I hear sirens and electronic horns every minute.

[Avocado Baby]

I can't stand high pitched noises. I've always been sensitive to noise.

[Papillon]

Hi,

I'm glad I found this thread.

I can't handle cutlery scraping on china plates, fingernails on a blackboard. Strange as it may sound, I also HATE the 'sound' made when I pick up a pen to write and forget to click the button at the top to get the tip out and ready to write. It doesn't 'sound' like much, except to my ears it sounds similar to the noises I've mentioned above.

I have also always been terrified of thunder, but thought that was just something unrelated. It was very interested to read about Lilly, LillyPie - I used to be absolutely freaked out as a child, so much so that I caused myself injury once when I was outside on the concrete and Mum was walking away from me and I heard thunder - I crawled towards her and when I stopped crawling and sat down I looked behind me and there was a trail of blood, I'd taken the tops off my toes and not even known about it due to lack of sensation. Ouch!!! I am not SO terrified now, as an adult, but I still hate them - have to keep telling myself I'm perfectly safe either in the car or at home, even if the lights go out, I'm safe.

Papillon

[Justy Me]

what would an intolerance of loud noises and textures have to do with SB? This is the first I've heard of any correlation between those things and SB

[jellolegs23]

Justy,

It has to do with Hydrocephalus, people with Hydrocephalus tend to have a condition called the Non-verbal Learning Disability and can cause a number of problems.

[Amnada]

Hi everyone,
About textures, Like Dahlia I also have to feel clothes. My husband thinks I'm a little crazy when I shop for clothes the first thing I need to do is feel it!
I don't have SB, so I think that part is just personality.

I read something about sensitivity to high sounds and shunts. I asked the person who did my sons hearing test and they hadn't heard of it. Which doesn't mean there isn't an association.
I can't remember where I hear it. Maybe on the SpinaBifidaKids site at BabyCenter.

[Avocado Baby]

I also can't stand the sound of people scratching denim. If someone is wearing jeans and they go to scratch their leg it makes me shudder!

[Mustang Sal]

I also can't stand the sound of people scratching denim. If someone is wearing jeans and they go to scratch their leg it makes me shudder!

Oooh me too!! I also hate the sound of normal skin being scratched - my sister constantly itches her legs and it drives me insane! Ooh and the sound of someone brushing their teeth - <shudder>

Noise just generally bothers me - I simply cannot concentrate or gather my thoughts if there's too much noise - I can't sleep unless it's in complete silence, I can't study anything unless it's in complete silence - all totally unrealistic I know! Sometimes my office gets really noisy if everyone's on the phone at once, and I feel myself getting a bit hot and bothered by it, like I just want to stand up and scream at everyone to shut up! I start to feel a bit weird, like i'm in a kind of bubble and the noise just gets louder and louder - argh!

I think the cutlery, balloon and blackboard scraping sounds are disliked by many people, whether they have SB or not so i'm not sure if there is any significance. It's quite an interesting subjec though!

[Gymp]

...I simply cannot concentrate or gather my thoughts if there's too much noise - I can't sleep unless it's in complete silence, I can't study anything unless it's in complete silence...

I'm pretty much the same

Gymp

[Avocado Baby]

I found this article. It explains lots. http://sbhi.ie/images/The-effects.pdf

[Nataly]

Hey everyone!
Thank you for those who have replied or read my question.
Sorry for any confusion (if there was any) and I think I may have my problem solved.
A lot of people tend to think I'm a big (jerk) because I just have those days when I too many people have interacted with me. I guess I get "over-stimulated". I hate fire-drills at my school!, but I can play the music so loud in my car it will make your ears burst.

[eng188]

For those of you outside of North America, you might not have seen the EAS (Emergency Alert System). This is an interruption of normal TV programming to advise you on what to do during an emergency, such as a tornado, earthquake, nuclear event, etc.

Example off of YouTube (This example is just a test, but they can come on just as suddenly): http://www.youtube.com/watch?v=4FY9-ioq96Q&feature=related

Stuff like this and special report interruptions freaked me out as a kid, and still are annoying.

[Mustang Sal]

Urgh that's horrible!! That would totally freak me out too! I'm so glad I live in England where we don't get scary stuff like tornados etc :)

[Gymp]

For those of you outside of North America, you might not have seen the EAS (Emergency Alert System). This is an interruption of normal TV programming to advise you on what to do during an emergency, such as a tornado, earthquake, nuclear event, etc.

Example off of YouTube (This example is just a test, but they can come on just as suddenly): http://www.youtube.com/watch?v=4FY9-ioq96Q&feature=related

Stuff like this and special report interruptions freaked me out as a kid, and still are annoying.

Ah yes the Emergency Broadcast System,I remember those..."This Is Only A Test" bla bla bla...Haven't seen one in years though.Then there were the "Air Raid Siren" tests too.They've dismantled most of those towers with the large horns on top in our area over the last few decades but one or two are still there,looking a tad rusty too.

When I was a young kid in the early 1960's there were the "Duck And Cover" segments broadcast on T.V.showing you to hide under just about anything no matter where you were in the event of a nuclear attack.I actually remember lying in bed at night worrying about when and where the Russians were going to drop the bomb.Scary times back then...for me anyhow.

Like,diving under your desk at school was going to help you survive in a nuclear war,Sheeech...:-P

Gymp

[liezel vorster]

Hi Nataly,

I'm new to this group and I am also confused about a lot of things about SB.
I also feel sensitive to loud noise and will leave if a group of people are talking to loud at the same time.I don't know if it is because of the fact that I have a VT shunt.Maybe I just have very goog hearing.

Enjoy the day!

Liezel vorster

[Dodger67]

Hi Liezel :happy065:
Please post an introduction, tell us who you are.

[lovemydaughter]

Hi!

Our 11-year-old daughter, who has myelo Spina Bifida, has always been very sesitive to loud noises. She plugs her ears with her fingers every time we beep our cars to activate the alarm. She also does this whenever there is any other loud noise. Also hates thunderstorms. It's good to know that she is not the only one!

Hmmm..... I wonder what the connection is?!?

[nolda]

I have a big issue of this. I went through all the pages of this thread and understood a little bit why michelle is so. I smiled to myself after reading all the posts and thought how true it is with her and I find it difficult to imagine whether such sensitivity is possible for one to have? When I had asked neurosurgeon, he told me there is no connection to noise and sb.

Fire Crackers stress her up, honking sound which is too much near our residence, I feel so silly to say that she wakes up to the bedsheet flying (While fan is on or when the wind blows) so much so my humming irritates her.

She is having shunt and chiari II malformation. She doesn't sleep well because of this sensitivity. She closes bedroom completely (windows and door) in the nights or whenever she takes nap.

The neuropsychological test is a good idea , I'll see that she gets tested in this regard.

[NerdaliciouS]

I just wanted to say...

It's not so much loud noises with me. It's certain pitches.
Certain screaming (Ahem, Cannibal Corpse?), that annoying "buzzing" type noise monitors sometimes make. Mine's older and makes it every so often and it makes me rage like a zombie with a hunger for brains!!!!!! (Sounds kinda like that high pitched noise made from tv's) And sometimes creaking from a door, or even this noise taps sometimes make. Usually with older taps, it makes a weird kind of noise. ...Anyone else hear a reallllllllllly high pitched noise when someone blows a dog whistle? ...Now I feel weird for asking that. :(

...Those're what bug me. A LOT. People think I'm crazy, but it's not the volume, it's the pitch. :(

[eng188]

I just wanted to say...


...Those're what bug me. A LOT. People think I'm crazy, but it's not the volume, it's the pitch. :(

I think that's the real problem with me and my previous post. The Emergency Alert System isn't loud, per se, but it has that perfect pitch to get under your skin.

I have somewhat of a fascination with emergency vehicles, and am aware that there are different brands and manufacturers of sirens and horns. Back in the 80's, San Diego Police's cruisers had electronic horns that ALWAYS made me junmp out of my seat, whereas San Diego Fire's horns never bothered me, nor did any of the Ambulance services (San Diego contracted to a private company for ambulance). And oddly, Sirens never bugged me that I remember. Just those horns that are used to blast through close-by traffic.

[Nataly]

Hi Liezel,

Welcome to the group!, I've haven't had the time to reply, so sorry!.

I am confused about some issues with my spina bifida such as this. However, I am growing and understanding more about myself each day. If you have any questions/concerns please feel to message me!. :)

[Nataly]

Hi Lovemydaughter,

I worked at a kids camp with special needs. And this one boy (he has Spina Bifida) we had in our cabin would always plug his ears too. If we were in the cafeteria, he would do it, and it wasn't that loud. His counselor would ask him why he did that and he would reply "it's loud".

[Nataly]

Nerdalicious,

Your not crazy, I hear it too. And yes it is quite annoying. >:(