Linda
I am 67 yrs old, spastic quuad and a retired college professor. I
learned to a 3 wheeled bike fashioned by my father who was a mechanic.
Ifinally got to where I could tilt the third wheel up and ride two wheeled.
I was about 10 yrs old.
Bobby
----- Original Message -----
From: "Linda Walker" <[log in to unmask]>
Newsgroups: bit.listserv.c-palsy
To: <[log in to unmask]>
Sent: Thursday, June 16, 2005 10:17 PM
Subject: Re: new to list introduction
> Wow! how old were you when you learned to ride a two wheeler? That is one
> of my goals with Case but he is still learning the 3 wheels. It seems
> several people here understand about the looking down but in tons of
> therapy and discussing falling when running no one ever mentioned this.
> Strange!
> When my son was in college he took up hang gliding, very similar to sky
> diving. one of his friends fell to earth and they had to race him to the
> hospital and he has never totally recovered from the brain injury. An old
> boyfriend of mine was a sky diver who broke his leg and it never healed
> properly and he was in a long leg cast for over a year and became addicted
> to narcotics for the pain. Just food for thought. Although I love to
> challenge myself physically, I don't like to do things that can cause
> permanent injury as my view is that life already throws us enough bad
> curves as is. I also used to go skydiving with friends but alwasy stayed
on
> the ground watching them float down to lunch. This was at the Han airstrip
> on Maui, HI and was quite fun. As a single parent I felt I could not risk
> something that would possibly leave me unable to care for them even for a
> short time.
>
> All the best,
>
> Linda
>
>
> At 12:06 PM 6/16/2005, you wrote:
> >Linda,
> >
> >=20
> >
> >Older brothers can be a powerful motivator! I have a brother who's 51
> >weeks older than I am, and he first taught me to ride a two wheeled
> >bike, and to drive. =20
> >
> >=20
> >
> >I've worked in the disability field for the last 17 years, and my first
> >job in the field out of college drilled into us a concept called "the
> >dignity of risk." Basically, dignity of risk is letting a person with a
> >disability (or anyone, for that matter) try things they want to (taking
> >appropriate safety precautions, of course), realizing there will be some
> >that work well, and others that don't. But, a person learning that an
> >activity might not be a good "fit" for them through experience is
> >usually better than being told "you can't do that because you have X."
> >Case's doctors may recommend activities that he not do, and those
> >recommendations are probably good ideas, but, as it sounds that you're
> >already doing, help him learn to, and let him do try the things that he
> >wants to do.
> >
> >=20
> >
> >Those are easy things for me to say, since I've not been a parent.
> >
> >=20
> >
> >One thing I've always wanted to try, but haven't yet, is skydiving. I
> >guess I'd better get after it before the opportunity passes me by.
> >
> >=20
> >
> >Kendall Corbett
> >
> >=20
> >
> >An unreasonable man (but my wife says that's redundant!)
> >
> >=20
> >
> >The reasonable man adapts himself to the world; the unreasonable one
> >persists in trying to adapt the world to himself. Therefore, all
> >progress depends on the unreasonable man.
> >
> >=20
> >
> >-George Bernard Shaw 1856-1950
> >
> >=20
> >
> >=20
> >
> >=20
> >
> >-----Original Message-----
> >
> >From: Linda Walker [mailto:[log in to unmask]]=20
> >
> >Sent: Thursday, June 16, 2005 9:44 AM
> >
> >To: [log in to unmask]
> >
> >Subject: Re: new to list introduction
> >
> >=20
> >
> >hmmm...wise advice because he wants to please us he might try too hard
> >
> >also. He can ride his tricycle 2 miles. We often play a counting game.
> >Nana
> >
> >count how fast I get into the car. We have a trampoline and he could not
> >
> >even stand up on it at first and now he has taught himself to jump alone
> >
> >and recently I counted 535 jumps his record before falling. None of us
> >
> >could belelive he could do it. He is motivated by a two year older
> >brother
> >
> >as well. Thank you all.
> >
> >=20
> >
> >At 07:09 PM 6/15/2005, you wrote:
> >
> > >it is good that Case already knows when and how to say
> >
> > >i need help. many of us did things that it would have
> >
> > >been better had we knew that we were pushing beyond
> >
> > >what we could wisely do.
> >
> > >
> >
> > >--- Linda Walker <[log in to unmask]> wrote:
> >
> > >
> >
> > > > Thanks so much. We are on North shore of Oahu and he
> >
> > > > attends Sunset
> >
> > > > Elementary which is across the street from Pipeline,
> >
> > > > one of the most famous
> >
> > > > big wave beaches. In fact if they have to do a
> >
> > > > helicopter rescue they land
> >
> > > > on the school grounds but this has not happened
> >
> > > > since we have been here.
> >
> > > > From reading this list I know he will have a good
> >
> > > > life like so many of you
> >
> > > > have made for yourselves.
> >
> > > > We try not to baby him but because he is so social
> >
> > > > he knows how to wrap us
> >
> > > > around his finger....we sometimes do. Once he said
> >
> > > > to me, nana did you
> >
> > > > forget, I have cp, that is too hard for me to do. I
> >
> > > > said ok let me help
> >
> > > > you. He is too tight to totally dress himself but
> >
> > > > does undressing
> >
> > > > independently and bath and teeth brushing. We have
> >
> > > > definitely taught him
> >
> > > > it's ok to ask for help. We are so lucky that he
> >
> > > > escaped many problems, no
> >
> > > > problem with appetite or digestion. Friends are
> >
> > > > amazed at how much he eats
> >
> > > > and drinks to stay hydrated.
> >
> > > > thank you for answering.
> >
> > > >
> >
> > > > At 01:26 PM 6/15/2005, you wrote:
> >
> > > > >welcome aboard linda,
> >
> > > > > it appears that you all have gotten a lot of
> >
> > > > ducks
> >
> > > > >in a row on helping Case. he sounds like a small
> >
> > > > >wonder. you'll gets lots of infomation here. my
> >
> > > > first
> >
> > > > >bit is to tell you you are on tract. help him
> >
> > > > adjust
> >
> > > > >where necessary and don't baby him.
> >
> > > > > i am ken, a 56 year old retried computer
> >
> > > > programmer.
> >
> > > > >i have two children and two am a grandchildren. i
> >
> > > > live
> >
> > > > >in metro atlanta.
> >
> > > > > by the way, i like hawaii. what island are you
> >
> > > > on?
> >
> > > > >
> >
> > > > >--- Linda Walker <[log in to unmask]> wrote:
> >
> > > > >
> >
> > > > > > Hello,
> >
> > > > > >
> >
> > > > > > I do not have cp but am a family
> >
> > > > caregiver
> >
> > > > > > and joined hoping to learn and
> >
> > > > > > to get advice from people who've already
> >
> > > > experienced
> >
> > > > > > what my 6, nearly 7,
> >
> > > > > > year old fantastic grandson, Case is going
> >
> > > > through.
> >
> > > > > > He has moderate spastic
> >
> > > > > > diplegia, speaks well (lots of speech,
> >
> > > > occupational,
> >
> > > > > > physical and vison
> >
> > > > > > therapy so far) and is mainstreamed in school
> >
> > > > with a
> >
> > > > > > one on one because
> >
> > > > > > there are some things he has not yet mastered.
> >
> > > > He
> >
> > > > > > walks, falls alot, and
> >
> > > > > > loves to run.
> >
> > > > > > Once when watching him run, he fell
> >
> > > > right in
> >
> > > > > > front of me and I noticed
> >
> > > > > > that the reason he fell was because he looked
> >
> > > > down
> >
> > > > > > at his feet. That day
> >
> > > > > > was a huge breakthrough because when I taught
> >
> > > > him to
> >
> > > > > > look out a little
> >
> > > > > > farther he ran all over the park without
> >
> > > > falling. It
> >
> > > > > > was amazing and he was
> >
> > > > > > so pleased with himself. Before this day, I
> >
> > > > thought
> >
> > > > > > he lacked balance, but
> >
> > > > > > the therapists said it was not a balance issue
> >
> > > > and
> >
> > > > > > that caused me to look
> >
> > > > > > for other reasons causing him to crash. I still
> >
> > > > > > think his balance may be
> >
> > > > > > affected by cp despite what the therapists said.
> >
> > > > > > This same eye tracking
> >
> > > > > > issue seems to affect his tricycle riding. He
> >
> > > > > > doesn't look far enough out
> >
> > > > > > to keep from bumping into things but we are
> >
> > > > working
> >
> > > > > > on his being able to
> >
> > > > > > ride home from school without help. He's pretty
> >
> > > > > > close on this.
> >
> > > > > > His father moved the family to Hawaii
> >
> > > > > > because the school in Hawaii was
> >
> > > > > > willing to let him run, whereas the schools in
> >
> > > > Los
> >
> > > > > > Angeles wanted him in a
> >
> > > > > > walker. The school here is terrific as it is all
> >
> > > > > > grass so he does not fall
> >
> > > > > > on asphalt and can be more active which he
> >
> > > > loves. We
> >
> > > > > > are trying to see that
> >
> > > > > > he is as independent as possible and also keep
> >
> > > > him
> >
> > > > > > aerobicized to develop
> >
> > > > > > his heart and strength. He is a highly motivated
> >
> > > > > > child with a terrific
> >
> > > > > > spirit who would probably fit in well with this
> >
> > > > > > group when he is older.
> >
> > > > > > He has had several rounds of botox and
> >
> > > > it
> >
> > > > > > seems to work pretty well on
> >
> > > > > > him. In Los Angeles they did not sedate him and
> >
> > > > it
> >
> > > > > > hurt him so his mother
> >
> > > > > > did not take him back. In Hawaii the doctor
> >
> > > > sedates
> >
> > > > > > him, this is so much
> >
> > > > > > better. I was surprised we were not offered that
> >
> > > > > > option before and didn't
> >
> > > > > > know about it but there is no reason he or
> >
> > > > anyone
> >
> > > > > > should suffer. I read
> >
> > > > > > about how scared some people were to get botox
> >
> > > > and
> >
> > > > > > how it left them
> >
> > > > > > traumatized. I don't see how doctors can
> >
> > > > consider
> >
> > > > > > doing this without light
> >
> > > > > > sedation.
> >
> > > > > > The doctors are suggesting the heel cord
> >
> > > > > > lengthening operation. I am
> >
> > > > > > wondering if anyone here has had it. We have
> >
> > > > heard
> >
> > > > > > the older he is when he
> >
> > > > > > has the operation the better the result. Does
> >
> > > > anyone
> >
> > > > > > have any first hand
> >
> > > > > > experience they want to share with me? Is there
> >
> > > > > > anythng that is not as
> >
> > > > > > dramatic that works well? He is stretched daily
> >
> > > > and
> >
> > > > > > learning to do his own
> >
> > > > > > exercises. The whole family exercises regularly
> >
> > > > so
> >
> > > > > > this helps motivate him.
> >
> > > > > > Anyhow I probably won't stay on the list
> >
> > > > > > because I feel like I don't
> >
> > > > > > belong. I hope it's ok to ask these questions.
> >
> > > > > >
> >
> > > > > > All the best to everyone,
> >
> > > > > >
> >
> > > > > > Linda
> >
> > > > > >
> >
> > > > >
> >
> > > > >
> >
> > > > >
> >
> > > > >
> >
> > > > >__________________________________
> >
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> >
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> >
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> >
> > > >
> >
> > >
> >
> > >
> >
> > >
> >
> > >
> >
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> >
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> >
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