[tri-med] Re: Caroline's PT update

Irene,

Thank Goodness you had this evaluation done.  It is a testimony to how
we are our child's best advocate.  

Thankfully, our "Babies Can't Wait Service Coordinator (BCWSC)" hooked
us with a good PT but we are currently looking for an OT now and I found
it interesting (20/20 hindsight) that our BCWSC said she is waiting
until a specific OT becomes available because the one who is available
right now is "not as good" and it is "hard to change from one to another
once you start with one".  Hmmmm <she ponders>.  This means a lot more
to me now than it did when she said it.  

Can you request an end date for your current PT and a new begin date for
a new PT?  Or, can you at least ask your EI coordinator for the names of
other PT's on the EI list for you to interview?  

I'm reminded of the little red wagon with a squeaky wheel that a little
boy relentlessly asks, "Mom, can you fix this?"  And he doesn't stop
until the
Squeaky wheel stops making noise.  You need to be that squeaky wheel!  

If you do get another PT, perhaps just telling your old PT that while
you've developed a nice relationship with her, you really do hate to say
goodbye's but its time for Caroline to move on to the next level.
<Adding a smile here might help too!> A nice thank you will keep you
from an emotional dump on her and Caroline will be all the better for
it.    

Good Luck,

Janina 

http://gregoryarritola.tripod.com 
 

-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
On Behalf Of Trisha Thompson-Willingham
Sent: Wednesday, March 29, 2006 10:13 AM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: Caroline's PT update

Hi Irene

You always have the option of asking your EI coordinator for a change in
PT.  It could be that particular PT.  I have found a huge difference
from one to another within early intervention - and it seems like
another hour of PT for Caroline ( with someone else ) would be
beneficial.  My daughter Esprit has a scoliosis also, is getting a
kiphosis ( the slumping ) like you talk about due to low tone and also
scoots forward in her seat.  Our early intervention PT ( our third )
does the stretching and gives many ideas to us like the Shriners' PT did
for you.  I found this PT by chance when the other one went on maternity
leave, but I have changed OTs in the past because I did not feel Esprit
was benefiting - and although it feels hard to do - you don't want to
hurt anyone's feelings.... you are your child's advocate and in the end
everyone understands.

Good luck!
Trisha Willingham
Mom to Esprit - Full T18 - and almost 3!  And Sarah - 11 months.

-----Original Message-----
>From: Irene Smith <67.irene@xxxxxxxxx>
>Sent: Mar 29, 2006 9:35 AM
>To: Tri-Med <tri-med@xxxxxxxxxxxxx>
>Subject: [tri-med] Caroline's PT update
>
>I have been complaining for a while about Caroline's PT.  She is SO
>incredibly nice, but I just didn't think she was doing a great job.  We
had
>been also taking Caroline to Shriners for AFOs, wheelchair, stander,
and for
>her scoliosis.  We talked to the doctor there and they recommended a PT
>evaluation with their therapists.  We finally, after 4 rescheduled
appts,
>were able to do that yesterday.  HOLY COW is all I can say.
>I am actually almost sick at how much better their PTs are compared to
her
>early intervention PT.  They spent a while just looking at how she is
>positioned in her wheelchair (her EI PT has never even heard of the Kid
Kart
>and never looked at how she sits in it).  They worked on stretching for
a
>while, recording exactly what her % of range of motion is in every
aspect
>(her EI PT has NEVER done any stretching whatsoever!).  They talked to
me
>about how exactly your spine strength develops and gave me NUMEROUS
ideas on
>ways to increase her strength.  Caroline sits propped on her hands
fairly
>well, but she is very hunched over.  She also scootches her butt out
when
>sitting in her wheelchair.  They advised me that she needs to increase
her
>lower back strength and were so creative in finding ways to do that.
They
>gave me at least 10 new ideas on ways to work with her JUST in regards
to
>strengthening her back.  I learned more during this hour than I have
during
>the last 2 1/2 years with her EI therapists.  Sad.
>
>I am going to be taking her to Shriners every other week from now on.
>Unfortunately, they are about an hour away from us, so it is not
convenient,
>but I HAVE to do this for Caroline.  I am just sick I didn't start this
long
>ago.
>
>So, my question is whether I should also keep the EI PT or just
discontinue
>services.  She has been basically doing the same exact things with
Caroline
>for 2 1/2 years.  On one hand, I feel like I could just tell and show
her
>what Shriners is doing, on the other hand, that should be HER job!  I
>shouldn't be instructing her on how to work with Caroline.  She doesn't
seem
>to be offering me anything, other than the fact that she does make sure
>Caroline gets a hour devoted to some type of PT each week.  I just feel
like
>I don't need her in my house a hr a week and I am really getting
annoyed at
>how little she has done.
>
>Another thing that really irks me is how many parents who just accept
EI
>therapists not realizing how much they are missing out on!  It is
really
>scary!  I wish there was a way I could get the word out, but not sure
how
>you would do this.
>
>Any suggestions on how to handle this situation?
>
>Thanks!
>--
>Irene
>Christina (4), Caroline (2 with partial trisomy 17p) and Kallie (born
>6/23/05)
>Caroline's site:  http://www.caringbridge.org/visit/carolinesmith
>
>                  Building ___ooOOoo__ Rainbows
>                       www.trisomyonline.org
>                  Families Helping Families On-line
>

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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