Re: NO Motorized conveyance

July 27, 2005

My understanding of this is that it's a gas engined motor that they are not

permitting out on the rink floor. You should look into that more closely.

Here in Ontario the definition is curbed around the weight and propellant of

the motorized conveyance.

I have had some personal bouts over being told to remove myself from such

areas and I have yet been ushered out. I simply say, would you expect me to

tell you to remove your legs or feet? If not then you cannot expect me to not

wheel in with my electric wheelchair.

My wheelchair is my legs and feet and so where ever amblutory folks go, I have

every right to follow. So do yourself and your kids a favour and see if there

are " loop holes " that you can slide by.

However, do so as long as it isn't jeopardizing your SMA child.

Angie

On 2005.07.27 02:00, Jenifer Woody wrote:

> Oh god darlin..... I hate those moments! You made me tear up just thinking

> about it If you are coming to the gathering I'll let Krystan bring her

> skates and she'll skate with him. You can tell him she looks like a

> miniature Hillary with her blond hair and blue eyes *LOL* I'm surprised

> that they even let Brett on the floor honestly. The regulations for skating

> rinks clearly state " no motorized conveyance " on the floor. I can't even

> take h on the floor in her manual unless we rent the ENTIRE rink. There

> are just too many liability issues involved. Did you know that had the

> other child required medical attention it would have been YOUR home owners

> insurance that footed the bill? It's absolutely ridiculous, but true. Even

> if our kids aren't at fault they are penalized for playing because their

> chairs weigh so much and can do so much damage. My opinion is that when

> h is ready THEN she'll go to the skating rink just to make her friends

> happy. Right now it's just too miserable for her and I won't make her do

> it. Krystan loves to skate and I don't even take her unless h is with

> my parents. Why shove it in their faces that there is one more thing they

> can't do like their friends? As for the people who say we should make

> them.... They can all take a flying leap as far as I'm concerned. Until

> they have actually parented a child with a physical disability I don't want

> to hear their opinions on how it should be done. That's like the childless

> couples who are " experts " on childrearing! It's just downright annoying.

> What really sucks is that these are my friends and I had a hard time

> getting them to just stop. I've now drawn the line though. Whenever the

> subject is brought up I remind them that they have never dealt with the

> situation and that it might seem different to them if it were their child

> in tears. Then I! walk

> away and take a valium. *LOL* Not really of course, but tempting

> sometimes. How can you calmly tell someone that they get upset if their kid

> skins his knee while yours is recovering from surgery or pneumonia, that

> they hug and baby thier kid over not being invited to one birthday party

> while your child is left out of MOST birthday parties because he/she can't

> get into the house? Maybe I should take that pill tonight..... anyone have

> one for me? It's late and I'm tired and cranky! Big hugs to you and Brett!

> Jeni

>

> " Kristal R. Koehler " <Brettsmom@...> wrote:

> Jeni,

> I can relate to the skating thing- Brett went to his first skating party

> over the weekend. He had fun for about 45 minutes, then it turned into a

> wreck. Keep in mind that Bretts chair is pokey anyway- but he gets into a

> collision with a kid (not Brett's fault)- but the other kid got hurt. Made

> Brett burst into tears...then he wanted to " couple skate " with a girl (who

> was 15) and he kept trying to get her attention on the floor- music

> blaring- no way anyone (but me) can hear him- so he gets upset about that.

> So we leave- and he is crying just a little. As soon as I put him in the

> car- start to put his power chair in the back and he is bawling full force,

> sniffles and all. I get into the car to ask him what happened. He looks at

> me and says I HATE SMA, I should be able to put on roller skates and keep

> up with my friends, I should be able to run around with my friends,

> everybody always leaves me behind....and it went on. I could feel his pain-

> and this was our first outburst wh! ere he

> was in tears over it and it completely broke my heart. Nothing I said

> helped, so I just held him until his tears stopped. I forgot my point

> probably the " what people think he needs to get used to " but it was a rough

> day for both of us.

>

> Kristal

> Mom to Brett- SMA II- 5 years old

> " Life is 10% what happens to you and 90% how you respond to it. " ~anonymous

> Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm

>

> Re: Re: Parents letting " us " go-- parents view/

> and parenting issue

>

> Even if that was rambling it made perfect sense to me We parents don't

> have the same challenges as our kids but by God we DO feel every loss,

> disappointment and illness. Some parents handle it with grace and dignity

> and then there are those of us (yes I include myself) who bungle by and

> hope that we're doing *ok*. I'm glad that I have this group to turn to

> because in my little brain I feel like I can learn from the mistakes of

> other people's parents and not put h too far into therapy! Right now my

> biggest issues are (#1) people who feel like they know what I should *make

> h get used to* (going to the skating rink for parties etc) and (#2) my

> 5 yr old is having some behavioral issues that I personally believe stem

> from competing for attention in our house. h does require a lot of care

> and her little sister has to take care of herself more than a 5 year old

> should. For example, when Krystan was 2 she had to dress herself while I

> was dressing her big sister. It's definitely NOT h's fault, but it's

> not Krystan's either. I think she just has so much pent up jealousy and

> even anger that every time she and her sister are in the same room they are

> fighting. h's mad because of what Krystan can do physically and

> Krystan's mad because h " gets all the attention " . The other problem

> I've pretty much worked out (It's just a matter of politely telling people

> where to shove it! ), but the sibling rivalry issue has me beat. If anyone

> has any suggestions I'd greatly appreciate them. Hugs

> Jeni

>

> <mongomustgolf@...> wrote:

> Regarding the feelings of guilt of a parent passing

> along SMA to their child - I agree with Jen - as a

> parent, you sometimes feel completely helpless to

> protect your child from this disease - you can protect

> them from just about anything else, anything but this

> god damned disease. As any parent could understand,

> seeing your child become injured - in ANY way - be it

> a skinned knee, or in our case, affected by Spinal

> Muscular Atrophy - is worse - - - far, far worse, than

> had it happened to yourself. A common prayer I have

> (and I'm not your overtly religious person who prays

> all the time - but this I do) - is to pray my son's

> disease leaves his body & takes mine instead (though I

> don't expect that to happen, nothing could possibly

> make me happier if it did). I've maintained that if

> some surgery was available to replace my son's damaged

> nerves with my own was available (which unfortunately

> is not) - regardless of what that would mean for me -

> I would do it immediately - just show me where to

> sign. As a parent, my child's life IS more important

> than my own - and I would gladly give it away for

> them.

>

> Sorry if I rambled on there a bit. Difficult to

> clearly express one's thoughts about this...

>

> --- Jenifer Woody <mom2armybratz@...> wrote:

> > First I'd like to say that this is strictly my

> > opinion as the parent of a child with SMA. Since

> > h is only 9 (and 1/2 if you ask her) I realize

> > that I'm not in the same place as your parents, but

> > I do know some of the difficulties. If my opinion is

> > uncalled for since I haven't " been there " yet,

> > please feel free to tell me to shut up

> > I just have to say that it's never ok for someone to

> > make you feel so terrible about basic needs. For

> > most things around here (different toy, craft

> > supplies etc) h does have to ask someone nicely

> > (please and thank you required) just like her sister

> > would. For basic needs (I need to spit, I have to go

> > to the bathroom, suction, cough etc) it's great if

> > she has time to be really extra nice about it, but

> > I'm not a stickler. There's just no sense in making

> > a kid beg for basic needs. If she needs to spit,

> > most of the time " gotta spit " is about all she can

> > manage with a mouth full! You would *think* that the

> > same standards would apply to adults.

> > That being said, I can see where some of the

> > frustration comes from as well. That's not to say

> > that I agree in ANY way with what was said or done.

> > It is easy to get overwhelmed when it seems like the

> > world is going to crash if you're not there to hold

> > it up. Parents now are more willing to ask for help

> > I think, so maybe the next generation will have an

> > easier time. But years of doing everything for

> > everybody have probably completely exhausted and

> > prematurely aged a lot of your Moms. They are tired,

> > cranky and bitter because they refused to ask for

> > help when they needed it. It's not your failure --

> > it's theirs! There is a level of guilt that comes

> > along with passing this gene on as well. When

> > h's having a bad day or something goes wrong

> > around here I do my damndest not to let her see me

> > get upset but I wish SO MUCH that I could take it

> > from her. So here us parents have passed this on to

> > you and there is NOTHING that we can do about it and

> > for a parent that it absolutely

> > gut-wrenching. Those of you SMAers who have kids

> > know that feeling don't you? Even if it's as simple

> > as a skinned knee it hurts when you can't *fix it*!

> > I hope what I'm saying is making some sense. It's

> > late and sometimes I have a hard time getting true

> > meaning across in an e-mail. I *really* hope it

> > doesn't seem like I'm in agreement with those

> > parents who have been... not so nice. My entire

> > intention is only to share my perspective on why

> > they might have wound up that way.

> >

> > Love and Hugs

> > Jeni

> >

> > [Non-text portions of this message have been

> > removed]

>

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July 27, 2005

With the skating rinks the meaning is anything with a motor - gas or battery

powered. The manager here would NOT say no to h unless it was a major safety

issue and I even checked into it. First I should explain that he is a close

friend of the family. I'm one of his " alumni " employees and he's been attatched

to h since day one. Anytime we want to have a party there he gives us a

giant discount and we rent the entire rink for the same price that others pay

for a group of 10 during a regular session. We can take the manual chair but not

the power chair on the floor during those times.

I won't fight this because I do feel like it is a major safety issue for h

and for other children. Even if h is very careful there are kids out there

who fly around and knock into others. Imagine if someone were to knock a child

down in front of h suddenly and she couldn't stop in time. h's chair

could flip, both kids could be injured and then we could be successfully sued

for everything we have!

Hugs

Jeni

Angie <angie@...> wrote: