[tri-med] Re: developmental behavioral therapists

Fawna,
You mean to tell me they actually wanted her locked in
a closet????  I don't think they are teaching Julian
sign language. They did start it awhile back but they
aren't doing it anymore.Hmmmm, I wonder why. But you
know what?  My daughter does flash cards with him
daily and he CAN say the words...but he just can't put
them in a sentence. And actually, only says the words
with the flash cards...never any other time. Why do
you think that is?
                 Karen...Julians grandma

--- Fawna <fawna33@xxxxxxxxxxxxxx> wrote:

> >  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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