yeah, the brothers will no cut him any slack and
that is good.
  on the other hand they will help him if he needs it.

--- Elizabeth Thiers <[log in to unmask]> wrote:

> Sounds like you have a lot going on there for him
> and are definitely going
> in the right direction.  Love the extra curricular
> activities and the fact
> he has 3 older brothers to hang with.  The chores
> and dressing will just
> have to take practice and modification if needed
> (such as loops inside his
> pants for now, or learning to hook his fingers in
> the belt loops).
> Your doctor is the one who should have told you
> about the cp deal.  In
> Dallas is a great OT school at TWU, if you give them
> a call you might find
> an OT in the area who knows about CP from something
> different than a simple
> medical model.
> When the exceptional ed folks test your son (as
> should happen every 3
> years), make sure they are using tests designed for
> kids with physical
> disabilities in order to get a more accurate
> assessment of your sons
> capabilities.  You've been having to deal a lot with
> his medical problems
> so, he has a lot of catching up to do in the social/
> emotional domain.  You
> can have the school write goals in that area.  Also,
> dressing goals can be
> addressed, etc.  Push the academics if you feel he
> is capable.  I find
> schools tend to underestimate what kids with
> physical disabilities can do.
>
> Hope I'm helping some.
>
> Beth t.
>
> -----Original Message-----
> From: St. John's University Cerebral Palsy List
> [mailto:[log in to unmask]] On Behalf Of
> Lisa Stone
> Sent: Friday, April 29, 2005 6:57 PM
> To: [log in to unmask]
> 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
=== message truncated ===


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