Steve,
Thankyou and yes you are so right about the service dog thing and epilepsy which Im sure you already knew. Her dog (Boston) has been certified since February right before school ended here in our hometown a 4th grade reading class invited her and Boston to a differant school to come in and talk about her epilepsy and her service dog. Thing is this wasn't her school and these kids were much older then her (my daughter just finished kindergarten)
daughter will sit there right in front of them and say "they just dont understand" its bad when a 6 year old does that when shes starting to feel like herself again!
People only hear, understand, and educate themselves with what they want to hear not what they need to hear when it comes to something that they are uncomfortable with.
thanks once again!
ELizabeth
____________
From: no_seizures_
To: epilepsy@yahoogroup
Sent: Sunday, June 7, 2009 7:46:55 AM
Subject: [epilepsy] Re:seizures that others don't notice
Hi Elizabith,
Your daughter is 100% correct in reacting like she does (giant smile)! The words I always use are so close to hers! My wording always used is "YOU JUST DON'T GET IT". What helped me to get others to understand and relate to my life concerning epilepsy is being fully open about not just the seizures, but the so much more that comes along with epilepsy. I was lucky having just complex partials 1-7 each month on average! For me, the seizures didn't affect me as much as the rest of epilepsy. As I met people I spoke about my epilepsy, I shared with others who I met the full story in simple words they could understand. It helped them to understand the real me!!! You could see in people's faces what they thought when telling people about memory, substituting words when talking, what brought on seizures, side effects from meds, depression, (28 years ago coming within a vein of taking my own life)!!! Opening up like this helped people to know me, treat me no
differently because they could see and understand the real me! We have nothing to hide long term. Hey, if people can't deal with me tuff (use whatever word you like). I'm simply me, if you don't like me, that's your problem, not mine! Good for your daughter saying what she does, how she does! Good for her to not hide the real her from others! I would love walking around with a service dog strictly to educate people to realize what they are for, and what the laws are! When I hear people with their stories of how a service dog opens up their lives, it brings a giant giant smile on my face! Take care, keep a smile on your face!
Steve
--- In epilepsy@yahoogroup s.com, Elizabeth Last NameSilva <elizabethkaron@ ...> wrote:
>
> I wanted to tell you my 6 and half year old daughter that has had epilepsy since two weeks of age has a saying and we have gotten quite freely with using it right in front of people a lot. My daughters dog just got certified this past February and Im telling you boy was our home town not prepared at all for a kid to have a service dog (seizure alert dog).
> My daughter out right says "THEY JUST DONT UNDERSTAND". Some look kinda crazy at her when she says it right in front of them but then she talks to me about why they just dont understand as we are strolling through the stores etc. Its very hard to educate some people or the whole town about whats going on a lot of people will only see what they want to see no matter what or they will only hear what they want to hear even though you are telling them it all. You are not by yourself there is many of us out there.
>
> Praying for understanding to the people that dont that they may have the vertue to keep quite or the patience and willingness to understand!
>
> Elizabeth
>
>
>
>
>
> ____________ _________ _________ __
> From: "mylmy@..." <mylmy@...>
> To: epilepsy@yahoogroup s.com
> Sent: Saturday, June 6, 2009 1:56:42 AM
> Subject: Re: [epilepsy] Re:seizures that others don't notice
>
>
>
>
>
> Nancy,
>
> Do you know that you have EP? Telling them might be a good way for
> educating people about EP.
>
> Millie
>
> > I get sick of people making fun of me when they do not know whats going
> > on. I think It is very rude, as I do not make fun of people. Nancy
> >
> >
> >
> >
> > ____________ _________ _________ __
> > From: pierce407720032003 <sacornelius@ msn.com>
> > To: epilepsy@yahoogroup s.com
> > Sent: Friday, June 5, 2009 12:56:51 PM
> > Subject: [epilepsy] Re:seizures that others don't notice
> >
> >
> >
> >
> >
> > We all have different types and issures. I'm not denying that. I'm only
> > saying that in my opinion there are two types of frustrations. One is from
> > the physical part (biting tounge, injuries from seizures, etc) and the
> > other is more of the emotional part (loss of control, dealing with others
> > reactions). Neither will be the same for any people but I don't think the
> > emotional frustration really depends on the type of seizure. Just my
> > opinion. I know some of you don't agree but milder seizures can be
> > frustrating also. It's like if you can see a seizure, people will
> > understand that it is frustrating. If you can't see it, then people seem
> > to think it never affects us.
> >
> > Uhura
> >
> > --- In epilepsy@yahoogroup s.com, Laura Gresham <greshamlaura@ ...> wrote:
> >>
> >> I think we all have issues that are hard to deal with, just on different
> >> levels. There's always going to be someone else who's case will humble
> >> us and make us feel grateful for what we must deal with. That being
> >> said, shouldn't we support each other no matter what? Laura
> >>
> >>
> >>
> >>
> >> ____________ _________ _________ __
> >> From: Tammy Wolfgram <tammy@>
> >> To: epilepsy@yahoogroup s.com
> >> Sent: Wednesday, June 3, 2009 12:23:02 PM
> >> Subject: [epilepsy] Re:seizures that others don't notice
> >>
> >>
> >>
> >>
> >>
> >> Hi Uhura,
> >>
> >> Speaking as the mother of someone with generalized tonic clonic
> >> seizures, I think you are very fortunate to have seizures that others
> >> don't notice. No sore muscles, cuts or abrasions, black and blue
> >> marks or broken teeth. Your risk of falling or drowning or other
> >> serious injury are also very low. I understand that you feel people
> >> may wonder "what's wrong with her" when you stand and do nothing for
> >> a period of time, but in the grand scheme of things that is not so
> >> bad. My daughter was taunted and made fun of in middle school because
> >> she had several seizures there. I would have given anything for her
> >> to only have seizures that no one else noticed, to be honest with you.
> >>
> >> Please don't take offense. I just wanted to give you the perspective
> >> from the other side.
> >>
> >> Be happy with yourself.
> >> Tammy
> >>
> >>
> >>
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