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Subject:
From:
Denise Alvarado <[log in to unmask]>
Reply To:
St. John's University Cerebral Palsy List
Date:
Fri, 15 Sep 2000 11:53:10 EDT
Content-Type:
text/plain
Parts/Attachments:
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Hello,
WARNING - A LONG POST
I am a lurker to this e-mail list.  I need some advice.  I have 2 questions:

   I have a child with CP (spastic triplegia) who is 4 1/2 years old, and is
getting tall and heavy.  Things are changing for us.  He usually uses the
walls to stay up while walking in our home  (doesn't want to use his walker).
 Outside while playing he uses his walker, and when we're on a leisurely
shopping expedition, we take the walker.  Up until lately, I've been able to
put him in a double stroller (with our 15 mo. old) or into a grocery shopping
cart.  But he's not fitting any more.    If we go out with  his walker, I can
count on going about 4 feet per minute.  It's not that he can't walk,
although he does get tired after a while (20 -30 minutes or so).  It's that
he's SO DISTRACTABLE!    He can't take 2 steps without hearing something or
seeing something, and then he just stops, and it takes a lot of urging and
reminding to get him to focus enough to stay with me.  He's very bright
cognitively (in my opinion), but he seems to get so distracted by ANYTHING.
And with another child, I might be able to take their hand and lead them on,
and keep them with me, but with a walker, it doesn't work like that.  I'm
ready to get some type of extra large stroller, just so we can do a grocery
trip in less than 3 hours.   Any advice?

Second, we went shopping for my 7 yo daughter's ballet leotard and tights for
her dance class.  The shop we used to use closed this year, so I went to
another local shop down the road.  The shop is attached to a dance studio,
both of which were built within the last 3 years.  There was one handicapped
parking spot.  The entrance presented itself with seven cement steps leading
to the front door.  My 4 yo son had his walker, I had the 15 mo. old in an
umbrella stroller.  Hmmm . . .  so I sent my 10 yo son to ask if they had an
"accessible" entrance we could use.  The young girl manning the cash register
said it was in the back of the studio (which meant for us a 5 minute walk)
but that it was locked, and she didn't know how to disengage the alarm on it,
so didn't want to open it.  I took a deep breathe, had my daughter carry up
the walker, had my 10 yo hold the stroller, carried up my 4 yo, made sure he
wasn't going to roll down the stairs, then I walked back down the stairs,
picked up the stroller, carried it up and then we were in the store.  As we
were starting to shop, the owner came into the store and the clerk started to
explain to the owner that she didn't know how to turn off the alarm so that
we could use the back entrance.  The woman owner didn't respond, but she
turned to look at me and didn't say anything.  I asked if the back door was
accessible and she said, "well, you're in now, aren't you?  I said,"yes, but
I wasn't looking forward to leaving the same way we entered."  She responded,
"well, it wouldn't be any easier using the back door because it was all the
way through the studio and in the back parking lot, and you're parked in
front"  So I said "Is that what you'd call accessible?" My voice was rising,
and my children were staring at me.  She said, "well, you had no trouble
getting in here!"  I said, " and how I am shopping here when my son's 10?
I'm not carrying him then!!!!!!!!"  (I was getting mad).  She said, "the
architect made sure we were 'to code'.   The back door's accessible."

 "Not if there's no sign telling me there's a back door, not if there's no
way to tell you I'm at the back door, not if the back door's locked with an
alarm on it - that's not accessible!!"

I'm so angry I could spit nickles!  So I leave immediately (the same way we
came), and drive to another dance shop I find in the yellow pages, 1/2 hour's
drive, and when I get there I hear the woman say, "we've just remodelled"
and another woman say, where's your new space, and she responds "we've put
the ballet and tap on the 2nd floor"  Well, I'm sure she didn't know what I
was all about, but I walked in with a load of attitude!!  "How am I supposed
to get upstairs with a stroller and a child with a walker?, You call that
accessible!!!!!!!"
However, she was more accomodating, and ushered me into the back room and
said, tell me what you need and I'll bring it all down for you to look at and
try on"   That appeased me slightly at the time, but now I'm thinking, so no
one on wheels gets to look at anything that's upstairs.  And this is a new
remodel?  Is this to code?  Where do I find this "code", and who do I call
about it?  I need to do something!!  And then there's a restaurant in our
little town that remodeled five years ago, and you have to go down 5 stairs
to get in!   They didn't want to waste a booth to put in a ramp, I guess.
I'm in the mood for causing some trouble in this town, look out, here I
come!!  Would someone just equip me with the knowledge of the law now,
please, so I can go and bother people?

Any advice or pointing me in the right direction would be appreciated.

Thanks,

Denise Alvarado
Washington State

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