[tri-med] Re: developmental behavioral therapists

>  First Steps has decided to call in a developmental
>behavioral therapist for my grandson Julian to start
>seeing. Has anyone had one for their child and if so,
>can you tell me kinda what they'll do?....
>First steps did say beacause of his inabiity to speak,
>it's frustrating for him to make his needs known.
>Therefore, he screams. AND LOUD!!  ha ha ha .

Karen, 

And they're right!  BTDT with Miss Philina at about age
5.  Rather or not the behavoiral therapist will be of any 
help depends on how realistic THEY are.  Our 1st 
experience was with a woman giving a lecture at the
Children's Hospital.  Now she was definitely out of her
element where it came to a child as complicated as ours.
Philina was doing much the same as Julian, and for the
same reason....frustration due to not being able to
communicate!  

This woman actually told me that when Philina started 
biting her wrist or screaming and ripping her hair out to 
just tell her, "No, that hurts!"  

"Really?  Obviously NOT enough, or she wouldn't be doing
it in the first place!"

So then she tells me to have her defer the anger to 
something else by giving her a doll to hit.  Yeah, like I'm
really going to encourage her to lash out at something
or someone else, and especially littlier then her.  No thinks
better she hurt herself then someone else.  Philina has
ALWAYS been incredibly gentle with babies.

As I said, that was our first experience.  She ended up
spending a total of 10 years in a private school that
specialized in severe language disorders and behavior 
modification.  (School district paid for it, though we
had to hire a lawyer to get them to.)  Actually only took
5 yrs to have her wonderfully fixed to the point the
district wanted to send her back into the same system
that had failed her before, and which after just 3 weeks
had us back to square one with the screaming and
tantrums.  So then we spent the next 5 yrs undoing the
damage of THAT 3 weeks!  Kid ALWAYS recognizes where
she's really not wanted, and responds accordingly.

Any way what they did with her in the private school was
set up a behavior mod program for use at school and 
home.  Consistency IS essential.  Now I'm not going to
lie to you, it wasn't easy or pretty.  And there's nothing
like being accused by strangers of 'child abuse' while
trying to impliment the program out in public.  Basically
it's let the kid scream and do their thing out in public and 
'they're a brat', or you can use the program and be 'an
abusive parent', or just never go out anywhere with 'em.
I opted for a combination of the last 2.

What they did with her was first to observe her and count
how many times she actually screamed in an hour.  Final
count came in at something over once every 30 seconds.
Yep, that bad, and no wonder it was impacting everything.
Then once they knew how bad it was we started working
on it.  When she would start screetching we'd put her in
a bear hug from behind, and put a hand over her mouth,
while counting out loud to 10.  If she stopped struggling
and calmed down we'd stop and let her go, but if not we'd
start the count over again and just keep counting to 10
until she gave up.  Like I said, not pretty, and also very
time consuming.  At one point they even suggested an
isolation/deprivation room for her, but we refused to
sign off on that idea.  They actually suggested locking her 
in a closet.  Sure it would have bee modified to have a light 
and ventilation, but still we said, "No way! Now THAT is 
abusive!"  Maybe it would have gone faster, but I just 
couldn't do that.

But the real key to the program was at the same time
giving her a means to communicate her wants and needs.
Didn't mean she always got what she wanted, but it
still helped big time.  We took a total communication
approach: Verbal, sign language and PEC symbols, all
backing each other up.  We knew that Miss P would NEVER 
really be a verbal communicator, but she does have a few
understandable words, and even hits us with a new one 
every now and then.  For instance Ryan's mom swears 
she said, "Thank you" several times at bowling yesterday,
but I've never heard it.  And btw giving her the long chain
fatty acids (Learning Facor here) makes her notably quieter
noise wise, but also more verbally communicative too.

One of the best things I ever did for the girl was get her 
one of those leather wallets that they sell at the fair with a 
chain on it.  I took off the chain and strung it on a long 
black shoestring necklace.  Then we put PEC symbol cards 
in the plastic credit card/picture insert.  Things that would 
be relevent to her world, and of interest to her:  Coca Cola, 
hamburger, cheese, taco, banana, bathroom, swing, etc.  
She got so good with that thing that she learned how to pan 
handle change with it to buy herself a coke.  (The 'I need 
change' was actually intended for use in a store, but she had 
other ideas for it.)  Who says these kids aren't smart?


Fawna, mom to Philina 23 yrs (PT6p & Moya Moya), 
Philina's Pharm Bengal Cattery, Escondido, CA USA
http://home.mindspring.com/~fawna33/
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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