[tri-med] Re: [tri-family] Re: matthews first feeding therapy appt.

----- Original Message -----
From: <StamTORCH@xxxxxxx>
> The PT would prefer I give him a pacifier or find some other method. I am
> willing to try other methods of comforting him and have.  They just don't
> seem to work

Don't forget though that a good therapist will also need a fair amount of
hands on to "feel" how Michael is doing. This is hard to explain but a
therapist gains so much by feeling how a body part is moving, how much
resistance there is, how the voluntary muscles move - and more. You can see
some of this by looking but you "see" so much more by feeling.

> I do not believe he is capable of thinking "manipulation" at this stage.
I
> feel babies have certain needs and his are not being met so he cries and
> seeks comfort.

Ahhh this is a common misconception - manipulation is not a negative thing
and even newborns "manipulate". Manipulation means doing something that will
get you what you want and newborns soon learn to do that. A baby cries and
then they get cuddled and a bottle (or breast of whatever) so they "learn"
to get what they want by crying. Its not a negative thing, its the way we
all control our environment.

A baby coos and they learn very quickly that someone will interact with
them, they smile at strangers and learn that strangers will smile at them.
Its all manipulation but its not negative.

Manipulation only becomes negative when it impacts negatively on the
individual or those around them. In this situation it will become negative
perhaps if he wont go to anyone else, if it interferes with therapy, or if
it stops him from socialising independently with other children on the
floor.

>> He really seems petrified, not just upset. I cannot let him
> "cry it out."  It just doesn't feel right.  My gut tells me to go to him
and
> help him.

The amateur psychologist in me would be asking why he has a reluctance to go
to strangers or have strangers around, is it age appropriate, is it related
to nasty interventions?

Alex certainly has phobias, even those that he cannot remember why they
occurred. For example Alex used to have a Bard button. Changing them is
painful. Alex only had his removed twice and he screamed and screamed when
it was done. It was always done in the same treatment room in the hospital
and to this day he cannot go into that clinic without getting tense. If he
walks past that room he runs. He was only 18 months old when this happened
and he has had lots of painful stuff happen to him so why this procedure?? I
think in all honesty it was probably in part because of my own reaction. I
got furious with the surgeon after the first change and the second was to
take it out and put a Mic-Key button in (less painful to change).

Always go with your gut, but try to step back and say why at times as well.
Yes children are totally dependent, but most at this age trust other people
to be dependent on as well, even strangers.

Alex's ped and I now have a deal with regards to painful stuff. He NEVER
does anything to Alex that is nasty - not even an injection. When Alex is in
hospital his ped is like Santa Claus - he brings him "gifts" - be it a
syringe to "shoot" the nurses, his glass of chocolate milk or whatever.
(Alex's favourite is post it notes and a pen) The other "doctors" (he calls
nurses doctors :-)) do the horrid stuff his ped and I are the comforters.

That doesnt mean I leave him alone, but where possible I do step back from
procedures and let the nurses do the nasty stuff. In the emergency room I
have a good reputation for being clear, level headed and helpful. These days
they dont even attempt to shoo me out for a resus. They know that I have
seen it all and done most of it so I dont flip out till after its over.

I know my place and step back to let the doctors do their "stuff". I do
watch though and will say something if need be. For example one doctor went
to bag him once with a latex ambu bag - I simply grabbed mine out of his bag
and handed it to him. The only words exchanged were latex.

At other times they will take bloods and I know which tests need to be run
specific for Alex and may grab the vials myself and say you will need this
as well.

On the ward though I am seen as a know it all interfering mum - because 9
times out of 10 I am right and the nurses wrong. Being right in some
situations doesnt earn you any brownie points. I find doctors more accepting
of being corrected than most nurses. If Alex is on a ward and I dont get
into a fight with nursing staff within the first 2 days I am doing real well
:-))

> <<It would have worked a lot earlier if someone else
> had done it, and I still feel like a mean mean mum.>>
>
> But it did work.  I guess I would rather something take alittle longer if
it
> didn't cause a ton of stress than to have it work sooner while putting him
> through hell. Perhaps I am naive

But it did cause long term problems, and to this day it still does. Taking
longer to eat slowed down his communication, has probably contributed to his
ongoing speech problems, caused dental problems and was even probably partly
to blame for so many ear infections and so on.

Our bodies were designed to do lots of things at certain times of
development - from eating to walking to whatever. Not doing them in a
reasonable developmental framework does often cause lasting problems.

I will never forget my early days as a therapist and thinking how cruel it
was to listen to children (toddlers) screaming because they were being
placed in standing frames. They certainly didnt like it, were very afraid
and I could have understood their mums racing in to take them out. But in
the long run it was for the child's own good. They couldnt understand that
they needed to stand to prevent long term bone and joint problems, to
lengthen their muscles, to give them a different persepective on the world
and more.

I always encouraged the mums (and dads) to let me be the nasty person to
place them in their frames, to develop a rappor in then playing with them in
the frames and so on. Parents should at times be the good guys.......

All of parent hood is a juggling act and no one ever gets it all right all
the time. The best we can do is to make the best choices we can at the time
with the information we have. Listen to everyone's point of view, try to be
objective and then do what you feel is right.

> Thank you Karen for all of the time you take to answer my questions.  I
> appreciate it and have learned so much on these lists.

Thats why we are here!!!!!

Don't judge each day by the harvest you reap, but by the seeds you plant.
Robert Louis Stevenson

Keep Looking for Rainbows!!!
Karen, Mum to Alex (7, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org

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

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