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 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
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