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

----- Original Message -----
From: <StamTORCH@xxxxxxx>
> I apologize for my ignorance but what exactly is a behavioral feeding
> program?

A behavioural feeding program operates on the premise that the child does
not eat (or does not want to eat) as a learned behaviour as opposed to the
fact that the child has a physical problem which prevents eating.

A child with an inco-ordinate swallow for example would not be a candidate
for a behavioural program.

These programmes are pretty much an "American" thing (or at least way more
popular there than in other countries)

> I still do not see how having Mom out of the room, which causes distress
for
> the child, to be helpful?

The basic premise is that the child has learnt not to eat / have an aversion
to food or whatever in the mum-child situation and the child has learnt what
mum will and will not tolerate, how far they can go etc etc. That is that
the child has learnt to manipulate the situation and that the mother is too
emotionally involved to prevent/stop the manipulation.

By having a neutral and independent outside person doing the feeding they
are less emotionally involved and can be more assertive in feeding (they are
not cruel - they cant be they are being watched by the parent) just more
detached. So there is less manipulation, more consistency, less frustration
from the person feeding for the child to pick up on and so on. (the person
doing the feeding leaves at the end of the day, something mum cant do)

An example of this is Matthew losing weight - its easy for the family to
create "excuses" eg he is more active rather than admitting than the food
that he is eating is no longer suitable for his age and body needs.

What happened in the first instance is that Cheryl and Matthew were assessed
in the first place by a "team". They determined that there was no physical
or organic reason for Matthew not to be eating (so the low tone may mean
that he is not an efficient eater but it is not stopping him from eating). A
psychologist assessed the dynamics of meal time, a dietician assessed the
diet and so on. They do not accept people into these programs unless they
are fairly certain of success.

And they do have a great success rate. I looked into the one at
Kennedy-Kreiger when I was in the US and if I had had the money Alex would
have attended at age 2 1/2. I didnt and we didnt get to the independent
eating stage until he was 5. As a result he even now has a lot of bad eating
habits (eg he will not tolerate new foods)

The premise has been around for many years though. I can remember over 20
years ago, when parents definitely did not room in with their children,
being kicked out and told not to come back for 3 days under any
circumstances when one of my daughters was not feeding well. (I could phone
but not visit)

At the time she was breast fed but not gaining weight on the breast so I
made the decision to switch her to the bottle. The only problem was that she
wouldnt take the bottle. The thought then was that she could smell my milk
and so wouldnt feed.

I did as I was told (as you did in those days) and when I went back she had
gained a pound in the three days and was taking the bottle beautifully.

> I am going through something similar with Michael.  He seems to only find
> comfort with me and has a high stranger anxiety level.  He crys
> uncontrollably if anyone else holds him and he freaks at even being put
down
> when anyone except his brother or sister are in the room.

This can be good and bad. Its normal to have some separation anxiety at this
age but if it becomes extreme it can hinder the social and physical
development of the child not to mention the strain on the family dynamics.

Therefore I hold
> him for a great portion of the day. The PT has a hard time with this

I can understand your PT's concern, but having been on the other side if the
picture with Alex as well I can understand yours too!!!!

Alex was also held a lot, and looking back I can now say too much in some
ways. (I used to do the housework with him in my arms or a snuggle wrap)
Children DO need floor time to grow and develop, especially for things such
as trunk/head control, independence in play, learning about their
environment and so on and they DO need to learn to separate from the
parents/siblings. Even back in the days when the extended family parented
the child went from one person to another and didnt get the opportunity to
form singular one on one attachments.

Being a single parent by the time Alex was 12 months old I was totally worn
out from his need for 24 hour a day watching (because of medical issues) and
my "need" to hold him (and his learned need to be held).

His head and trunk control in particular were probably very much effected by
this. As was his motivation to explore the world for himself rather than
passively watching the world from my arms/lap.

I was on the verge of collapse and not being able to parent at all when I
made the decision to place him into daycare (with monitor) half a day a
week. He still got loads of love and one on one but he also got interaction
with other children and other adults, they didnt hold him all the time and
so his physical skills increased a LOT. After the initial adjustment period
(about 3 weeks) he thrived and never looked back. It is not a decision that
I regret and we gradually increased his time away from mum. (very slowly -
he probably could have handled faster than his poor old mum)

It also helped me to let go. I had a lot of emotional reasons for not
wanting to let someone else take care of him (my daughter had been assaulted
by someone who was caring for her, I was afraid that Alex may die, I was
afraid that someone would take him etc etc) At some stage I had to stop
being as dependent on Alex as he was of me.

>>If he feels insecure and starts to cry I need to pick him up to
> console him.

Does he need to be consoled by being picked up? Or does he know that if he
cries that he will be picked up? Manipulation is NOT a bad thing, but like
anything it can get out of control. You both need to set limits that are
reasonable.

When Alex was little he learnt to manipulate situations by making himself
gag and throw up. I had to learn not to run to him every time he started
gagging. I would check sure, but in the end I would say "stop it, no one is
coming" and he did. The gagging was something he could control to some
extent and he had to learn to do it. There are some children in Alex's class
who still use retching and vomiting as a way of getting attention.
Thankfully Alex isnt one.

>> The PT doesn't love this arrangement but it is the way it is
> until he is comfortable with her.

You may have to help by setting some limits as well. Perhaps with regard to
how much crying you will allow, or whether you comfort him where he is
rather than picking him up every time.

>  I do not know what a behavioral feeding program entails, what goes on and
> what is required so I do not understand why the Mom can't be more
involved.
> Isn't the Mom the one who has to feed the child at home?

In the more intense feeding programs they actually admit the child for a
couple of weeks - and the parent has contact for everything except feeding
or in some cases no contact at all.

Why wouldn't they
> allow her to be in the room?  Can't she do some of the work while being
> guided by the specialist?

If it will work they will do that - but its not technique that is at fault
its a learned behaviour. All they are trying to do is change the learned
behaviour. Most parents have already tried all the techniques that the
therapist is using, but because they are close to the child and emotionally
involved they cant get the detachment needed to get the most out of the
child.

Parents "give in" a lot earlier than a stranger. This doesnt mean that the
parent is bad - but it can make the parent feel that way. The child may not
have learnt to manipulate the parents per sa, but learnt to manipulate
eating because of organic problems originally (eg low oral motor tone etc)

I remember one smart a## nurse who walked in when Alex was 12 months old and
told me that she had loads of experience feeding children and she would
"fix" the problem and get him to eat (at the time there was an organic
reason for him not eating - it wasnt behavioural) As an OT (and therefore
having some experience with feeding issues) I was upset, let alone the fact
that the way she said it seemed to put me down as a parent.

The ped was sitting in on the meal to see what happened, so I gave her the
bowl, the spoon and the food that the equally smart a** dietician told me he
SHOULD be eating and told her to go for it - I wasnt helping her at all.
Three mouthfuls and he threw up, she persisted and he repeated it. The nurse
left in tears. I took over and managed to get down three quarters of the
meal using "my" technique.

The ped, because he had sat in on the whole meal saw what I had been trying
to tell him and so organised the necessary tests to determine accurately
what the problem was.

Had the problem been behavioural at that time it may have been a very
different story. But in Alex's case he learnt the non eating behaviour from
the organic problem. Once we dealt with the organic problem that was
preventing eating then and only then could we work on the non eating
behaviours he had learnt.

The parent will certainly be feeding the child at home, but hopefully the
behavioural pattern will be broken by someone else, the parent will have
learnt new skills in parenting control and the parent/child bond will stay
intact.

> Again, forgive my ignorance on this.  I had a tough time with specialists,
> doctors, etc., who do not want/welcome my involvement in my child's care
when
> he was in the hospital (or now).

Oh I wont leave Alex alone in hospital for ANYONE - EVER, EVER, EVER. Seen
way too many mistakes made when I AM there. I cant imagine what would happen
if I wasnt there.

I am equally involved at school and everywhere else that Alex goes. I know
that I am setting myself up for being accused (and have been) of "making him
sick" (also known as Munchausens by Proxy) because people are threatened by
my level of knowledge and involvement. Thankfully I have set myself up with
a wonderful support team.

But I also hope that I am objective enough to know when to let go for Alex's
good and the well being of our family unit. Not easy sometimes and I admit
that to our ped often.

A typical example at the moment is night training. Alex could easily be
night trained but it is me thats holding him back. If someone else would do
it I would welcome it but at the moment I dont have the physical and
psychological momentum to be bothered (too many machines, too much
disruption to an already scanty night of sleep, too many sheets to wash) Its
easier for me to make excuses and go with the flow than to work on it for
Alex's benefit.

Alex could have been eating orally a lot earlier than he did, the organic
problem pretty much had been corrected/ grown out of by the time he was 2.
But I knew that I wasn't firm enough, consistent enough etc. He had the
feeding tube and it was easier to go with the flow. (we don't unfortunately
have behavioural eating clinics here)

In the end it was Alex's neurologist that sat me down and had a good
"talking" to me about how it wasn't in Alex's best interest to still be
manipulating me on this subject. I set up our own very intensive behavioural
program and it worked. It would have worked a lot earlier if someone else
had done it, and I still feel like a mean mean mum.

But it was in his best interest, he did start eating and eventually started
school eating lunch like the other kids. He still has the tube and its still
used on occasion, but he is more typical, and his self esteem is much
better, even if he eats much softer foods than the other kids his age.

The next step of course is to teach him to use a knife and fork. He
physically can, its just that its easier for me if I still cut it up and
just give him the fork. (I know - bad mummy, bad mummy)

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

Other related posts: