Lisa, I always loved horses, so for about 4 years,  each Sunday, I went
riding and i paid for half of it with my allowance.

My chores were collecting the trash cans and emptying them, weeding,
setting the table for dinner, and feeding our beagle.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Please ask your Congressperson to vote FOR the MICASSA bill, this
will allow medicaid funds to pay for community supports
instead of isolating the person in a nursing home or institution.
HR 910 is the bill number
Senate version of MiCASSA (S 401).

Oakland Mayor's Commission on People with disabilities
~Tamar Mag Raine~
[log in to unmask]
IM: tamarmag48
Yahoo IM Tamarmag56


> [Original Message]
> From: Lisa Stone <[log in to unmask]>
> To: <[log in to unmask]>
> Date: 4/29/2005 4:58:15 PM
> Subject: Re: New to group - Need your knowledge and experience to rely on
>
> Right now he is playing baseball and is horseback riding once a week -
> (private lessons in that he is the only kid that this lady will work with)
> the focus is on riding correctly, pushing verbal communications, and
general
> care of the animals and most importantly - having fun.  He has three older
> brothers, so he is constantly on the go with their activities.
>
> He is mainstreamed into a first grade class for about an hour a day. I
> haven't seen a whole lot of movement towards educating him outside daily
> life skills.  He is a sharp kid.  He will play with kids that are around
> him.  He tends to do well in new situations with new people (regardless of
> age).  He is a social butterfly and loves to be around people.  He is
rarely
> shy.  He has an Amtryke bike that he rides.  Unfortunately, he is kinda
> between bikes right now.  He has issues with riding the small tryke (which
> has a lot of Velcro parts and he thinks he is too big for) and even though
> we have already received the next tryke up, he is about an inch too short!
> Hopefully, we will have a growth spurt this year and get him going again.
>
> Writing is difficult because he shakes (granted, no where as much as when
> the seizures were going - anywhere from 20 - 30 an hour).  We are working
on
> him dressing himself - he has the take everything off down pat - including
> AFO's!  He still needs assistant in getting the items on.  We are working
on
> getting him to do things around the house because he is capable of the
basic
> things - putting things in the trash, picking up his DVD's and toys and
the
> big one that I have been pushing him on is using both hands to do basic
> items - pulling up his pants, pulling up the covers at night time, etc.
The
> fine motor is just not there yet.
>
> This past year has been so different - great, but a challenge to all in
the
> family.  When Matt was having the seizures so badly, that is all we were
> dealing with - what it was going to take to get them minimized.  We were
not
> even told he was CP until he was 4 1/2!  For some reason, we were supposed
> to know.  The school system went "Oh yeah, we knew that - we just didn't
> think you wanted to talk about it".  Makes no sense.
>
> Anyway, because that is all that life was about for so long - this med,
that
> med, and let's try it as a pill, maybe a liquid, and how about those
> sprinkles and once again now that we have a G-tube.  He was hospitalized
> last year and we did all kinds of testing.  We now know for sure that his
> brain damage is in the frontal lobe.  We are just now getting to the daily
> stuff (he was having trouble adjusting to not having seizures - too much
> coming in and him having to work through it) and what we need to do to get
> him as independent as possible.  Before, it was making sure he was not in
a
> place that he could get hurt when he would seizure.
>
> We are located in Texas about 30 - 45 minutes North of Dallas (depending
on
> traffic :)
>
> Thanks for all the input.  I will take all that I can get.
>
> Lisa
>
>
> -----Original Message-----
> From: St. John's University Cerebral Palsy List
> [mailto:[log in to unmask]] On Behalf Of Elizabeth Thiers
> Sent: Friday, April 29, 2005 5:08 PM
> To: [log in to unmask]
> Subject: Re: New to group - Need your knowledge and experience to rely on
>
> Hi Lisa,
> I'm Beth and I'm a pediatric OT who does not have CP but, just likes to
hang
> around for the good jokes and more important knowledge of what to help
> parents out with.  Communication is important how about sign and a
dynavox,
> not just a regular cheap communication board.  The problem with sign is
not
> too many people know it very well, dynavoxes can be hooked up to a
computer
> and used for regular school work on top of communcating with peers.  Also,
> decreases the need for interpreters in the classroom.  Have the school get
> an assistive technology team in there.  Make sure the technology matches
his
> IEP goals.  They should be modifing his curriculum to the regular
education
> curriculum. Is your son mainstreamed?
> What area of the country are you in?
> You have to understand most doctors don't look past the medical.  Plus,
they
> really don't know.  Not a lot of studies on kids with cp that look at
> effects of seizures, etc.  Frustrating both for parents and therapists.
> That's why you have to find people who will help you look at function.
Does
> he play with his peers?  Does he ride a bike?  Write paragraphs?  Dress
> himself, make a simple sandwhich, get his own breakfast?  Does he have
> chores around the house?
>
> Beth t the OT
>
> -----Original Message-----
> From: St. John's University Cerebral Palsy List
> [mailto:[log in to unmask]] On Behalf Of Bobby Greer
> Sent: Friday, April 29, 2005 2:23 PM
> To: [log in to unmask]
> Subject: Re: New to group - Need your knowledge and experience to rely on
>
> Lisa,
>
>     Try to give your child as many experiennces as possible. Try to
arrange
> socialization experiences with non disabled children when possible. So
much
> energy and resources are focused on PT, OT and ST, that sociialization is
> forgotten. Tamar had a great sugestion about developmental benchmarks.
Treat
> him as normal as possible.
>
> Bobby
> ----- Original Message -----
> From: "Lisa Stone" <[log in to unmask]>
> Newsgroups: bit.listserv.c-palsy
> To: <[log in to unmask]>
> Sent: Thursday, April 28, 2005 10:14 PM
> Subject: New to group - Need your knowledge and experience to rely on
>
>
> > Hi to all - I joined this group last week and have been reading
> > through
> your
> > emails.  I have an 8 year old CP child.  He is the most wonderful kid
> > in
> the
> > world.  He is ambulatory, but non verbal and of course, spoiled rotten.
> He
> > can do some things for himself (feeding) and can help when he wants on
> > dressing himself.  We have started insisting that he do more for
himself.
> >
> > We have been asking questions regarding what is in store for him.  You
> guys
> > seem to have already been there; done that.  What should I be doing
> > for
> him
> > at this stage in his life?  What can we expect for him?  Doctors have
> > not been very forthcoming with any information and we don't really
> > want to go there regarding the school systems.  We are still dealing
> > with them and
> are
> > really having to fight for language skills - we prefer sign language
> > (a little difficult with him being high tone, but he is managing with
> > a
> little
> > bit of adjustment) and they are pushing for communication boards.  I
> > have had my concerns, but now I really anxious about what needs to be
> > done for him.
> >
> > After 6 years, we do have the epilepsy under control with medication,
> > but have had to fight insurance to provide his meds at a reasonable
> > cost to
> us.
> >
> > Any suggestions, recommendations, help would be greatly appreciated.
> >
> > Thanks so much
> > Have a blessed day,
> >
> > Lisa Stone