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SteelMaiden
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13 Aug 2014, 6:35 am

I have neurological problems which affect my vision, coordination and gait.

I walk strangely and I find walking tiring because of the extra effort it takes to walk without tripping. Also my visual problems make crossing main roads scary and dangerous.

I keep getting laughed at / called names by youths that hang out in my area. This is because it is obvious to most that I have disabilities. I've even had parents of kids glare at me.

I'm scared to leave the house alone these days because of this.

Can anyone advise what I can do to allow myself more freedom?


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eggheadjr
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13 Aug 2014, 8:30 am

Hey SteelMaiden,

I'm a little woobly at times myself because of an ear issue.

Try not to let others looking at the way you walk make you feel bad about going out. Who cares what they think.

Would a cane help? I've seen some young women with canes and just assumed they were dealing with a mobility issue - no big deal. Might help you feel more stable when walking.

Take care :D


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SteelMaiden
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13 Aug 2014, 8:40 am

Thanks. I'm glad that you understand. Sorry to hear about your ear issue.

A cane could help. To be honest I have been considering a cane anyway so I can tap steps when I go down them (my visual problems make it very confusing for me to go down unfamiliar steps).

My neurologist is useless but I'm seeing my GP next week and she is good so I'll ask her what she medically thinks about this.

In the meantime I'm thinking of writing to my MP about disability hate crime. Today I was called a "f***ing spastic" by some youths. That's not the worst I've had.


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AardvarkGoodSwimmer
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13 Aug 2014, 10:47 am

SteelMaiden wrote:
My neurologist is useless but I'm seeing my GP next week and she is good so I'll ask her what she medically thinks about this.
I'm kind of open to that, too. I think specialists can have certain problems, and often a generalist can help more.

For example, I've struggled with bouts of depression and have had mainly negative and/or unhelpful experiences with psychologists and one psychiatrist. For myself, I've decided with future bouts, which I guess in a sense are likely, I'm going to be open to going to a doctor who's a GP like an internist.

Something else I've thought, would a dance instructor potentially help you for rhythm and balance? Maybe he or she could just watch you one time and then formulate plans for a visit later in the week. Basically, they would have certain tricks, or let's call them methods, which might work or might not, but might well be worth trying.

A cane would also have a communicative effect, that you do have a disability. With some people in some frames of mind, it might make a difference.



SteelMaiden
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13 Aug 2014, 11:21 am

My psychiatrist is very good but she said she's not allowed to give advice on non-psychiatric problems. So I'll try my GP.

Dance instructor could help but I don't know of any that understand my disabilities. I was thinking a physiotherapist but I find physical contact extremely anxiety attack-provoking.

What kind of cane would you recommend me using?


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AardvarkGoodSwimmer
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13 Aug 2014, 11:42 am

I guess just a matter-of-fact cane, or maybe one which is slightly decorative. One you're comfortable with and that's important.

and maybe also low-profile tennis shoes, still with medium padding? This might give you a more steady base.

It's a good thing contacting your MP and letting him or her know what it's like being an adult on the Spectrum with disabilities. As far as making any kind of formal complaint, that may escalate matters.

Maybe having an advocate or volunteer walk with you. He or she kind of acts as a fair witness. And if a teenager makes a comment, the advocate gives a medium glance. Some teenagers will get the point that it's royally uncool to make fun of someone with a disability, and some won't. Anything more than a medium glance probably just escalates in a counterproductive manner. Maybe your volunteer is with you a third of the time, so you also want the other two-thirds to go well.

Plus, in my experience in Houston, Texas, some drivers aggressively take a right turn at a light and other drivers just mindlessly follow the one ahead of them, and a volunteer or advocate can help with streets and intersections and is a good idea for this reason, too.



SteelMaiden
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13 Aug 2014, 12:01 pm

Good advice. I'll ask my support worker about the cane. And I'll ask her, when the weather improves next week, to take me for walks around the areas where youths hang out to see what she does in terms of body language - maybe she could teach me.

I bought new shoes (I only wear trainers as other shoes make it harder for me to walk) with my support worker yesterday and they are just what I needed. They've got good padding and they fit my foot profile well.

I will be needing my support worker to help me cross difficult roads. I nearly got ran over today, which is quite common for me.


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AardvarkGoodSwimmer
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14 Aug 2014, 3:59 pm

I sometimes suggest to people in school to take boxing lessons with the goal of tight defensive boxing to a draw, prefer a draw because you'd rather not humiliate someone you're likely to see again.

But that's in the relatively controlled setting of a school, which isn't even that controlled. But out on the street might be worse.

I do like the idea of both boxing and martial arts. Boxing for the less serious, martial arts for the more. And the zen of it all that when a person is prepared somehow that makes having to use it less likely. Still want to avoid dangerous places and practice good basic security.

Helpers, parents, teachers, etc., sometimes do not always really fully understand that an entrenched bullying situation is WAY more difficult to de-escalate than avoiding a bullying situation in the first place.

Yes, I'm in favor of understanding body language. All the same, I think more good will come from having someone matter-of-factly with you. Some of the youths will partially see themselves through this person's eyes, will see that it's being perceived that they're making fun of someone with a disability, and tone it down. Others of the youths won't. And hopefully an overall improvement, although with the standard ups and downs like anything.



progaspie
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14 Aug 2014, 5:26 pm

Speaking of martial arts, Tai Chi is a good activity to try. Exercises the brain. Corrects your bad balance as it works equally on both sides of the body. Anybody of all ages can do it and it gives you confidence.



SteelMaiden
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15 Aug 2014, 1:08 pm

Sounds like a good idea. How can I get into Tai Chi then?


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NicholasName
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15 Aug 2014, 4:14 pm

Maybe some kind of orthotics or braces to give you more stability could help. I definitely recommend physical therapy if you could find a way to tolerate the touching or get them not to touch you. If you have that much instability, it's probably causing you a lot more impairment than other people giving you trouble. It's probably causing you a lot of unneeded exhaustion and frustration as well.


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SteelMaiden
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16 Aug 2014, 1:02 am

NicholasName wrote:
Maybe some kind of orthotics or braces to give you more stability could help. I definitely recommend physical therapy if you could find a way to tolerate the touching or get them not to touch you. If you have that much instability, it's probably causing you a lot more impairment than other people giving you trouble. It's probably causing you a lot of unneeded exhaustion and frustration as well.


That's a good idea. I'll ask my GP or my care coordinator. Physio sounds like it could help. Orthotics perhaps too.

My centre of balance is way off due to lack of stability.


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