[Fwd: Fw: More ?'s from Donna]

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Dear listers,

Here again is more from Santopadre.

Donna :-)

----------

> From: SvcsInfo@...

> sdcarv@...

> Subject: Re: More ?'s from Donna

> Date: Friday, January 08, 1999 6:37 AM

>

> Hi Donna,

> Thanks for your patience... I will try to answer your friend's questions.

>

> <<Here goes:

>

>

>

> 1) Did she use student therapists to do ABA with her daughter? (You've

>

> already answered that one)

> As you know, we really didn't use any student therapists.

>

>

> 2) If so, were they trained by Dr. Partington? Did you or Dr. Partington

>

> supervise the therapists after the initial training? If so, how often

did

>

> you/ he assess their performance?

> Dr. Partington's methodology was introduced to everyone working with

> . He came to our home once a month...we didn't have a set

agenda

> though. We would review the past month with him; and he would define the

> skills we were to target; revise any strategies that needed refining;

and

> carefully demonstrate, teach, monitor, and coach our interactions with

her.

> His strategy (and the agency's strategy) was to teach us how to manage

her

> program ourselves (not all parents take advantage of this)--so he slowly

began

> shaping our skills so we could then determine the specific tasks--he

would

> provide the outline, and we " plugged " it in to our everyday life. During

the

> months leading up to her first IEP, he taught and coached me how to

develop

> her goals and objectives; then her subsequent IEPs I was able to do most

of

> the time-consuming pieces, and he would simply add the final touches. He

also

> taught me how to assess the day-to-day intervention--it was simple, if

her

> rate of acquisition slowed; we did an analysis, determined possible

reasons,

> and made ajustments (sometimes with his input; sometimes, without). This

> became easier over time, as the analysis would usually indicate a logical

> reason for what was happening. We did as much as we could ourselves

because

> his availability was limited and so were our resources ($).

>

>

> 3) Were the therapists degreed? If so, What level?

> The staff from his school had college degrees (B.A. and Masters) and

> California special education teaching credentials. Leta, the preschool

> teacher, had a certificate in early childhood education.

>

>

> 4)When did you know that had turned the corner and she was

>

> learning fast enough to catch up?

> We never thought of it as " catching up. " We were careful to not compare

> to other children (typical or other)...we only compared her

progress

> to where she had been (this was an important part that kept me, and us,

from

> getting too " down " ). Our overall goal was to help her be the best she

could

> be and in order to do that we focused on her " basic learner skills. "

> Attaining these critical skills would allow her to acquire skills from

> increasingly more typical environments, from incidental teaching, from

peer

> interactions, and from group instruction. When was nearly

five, the

> preschool class' theme of the month was " woodland animals " and she told

me,

> " owl live tree. " This was monumental to us because this was information

she

> learned at school--presented to the entire class...it didn't need to be

> specifically taught. Shortly after her fifth birthday her language

skills

> just took off--she started to spontaneously add more and more words to

her

> vocabulary. This was an incredibly exciting time for us.

>

>

> 5) Are you continuing any of the behavior therapy formally i.e. social

>

> stories etc.

> No, behavior therapy is no longer appropriate. We do; however, continue

to

> break some tasks down and simplify them if necessary. Our intervention

with

> her restructured how we " parented " her... so we continue to analyze her

> motivation, check what we reinforce, and always capture any teachable

moments;

> we actually use the principles for many aspects of our lives.

>

>

> 6) How did you work on " stimmimg behavior? " Did you use DRO?

> " Stimming behavior " was simply not attended to, and she quickly realized

that

> there were higher payoffs for more appropriate behavior (I thought she

would

> never stop slamming doors, cupboards, and drawers!). Again, the

analysis--a

> behavior that is reinforced will increase, so monitoring that

reinforcement is

> critical. I'm not familiar with the DRO term...but from the way I've

seen the

> term used in some literature I assume it's connected to reinforcing

desired

> spontaneous behavior--if that is so, then yes...we constantly keyed into

her

> motivation and delivered reinforcement at a high rate.

>

>

> 7) Were there any programs that you worked on that you worried that

>

> may never understand?

> We didn't use the term " programs " ; but there were a tremendous number of

> skills that we targeted that I really thought were totally out of her

reach.

> Most every IEP would bring about a sort of *cloud* for me... everything

seemed

> so out of reach. Spontaneous tacting (labeling), beginning intraverbals

> (conversation), attending to the environment (ie, looking out the car

window

> and tacting things she saw), manding (requesting) for information, etc.

This

> list could go on and on.

>

>

> 8) You have already answered this one... What activities outside of ABA

did

>

> participate in and how often.

> >From my earlier reply...Did you use any other therapies in conjunction

with

> her home program eg. Sensory Integration ?

> Through her IEP we used an OT for a short period of time. At age 3.6 to

> almost 4; however, we saw very little benefit compared to the " cost " of

> 's time. I truly felt her time was better spent with other

> activities. At age 6.6 to 7 an OT consulted with me regarding her upper

body

> strength in order to increase her writing skills. Again, we found the

benefit

> could be achieved through her ballet and gymnastics classes--the

gymnastics

> really did the trick for that one.

>

> Yes, we took to a psychologist who did developmental play

therapy.

> She was located in Berkeley, California; and we drove there for weekly

visits

> for almost 4 years (from age 2 until almost age 6). Dr. Stuart did not

do

> behavioral intervention at all, but I learned a lot from her--In the

> beginning, we worked mostly on 's separation anxiety issues (she

> suffered from separation anxiety disorder in addition to the autism--I

didn't

> know that was a disorder... but truly was abnormal in her

response

> to my not being with her).

>

> We went to a music and creative arts therapist for nearly a year (again,

a

> lengthy, weekly drive). was emerging with her verbal skills at

this

> time, and the creative arts (mostly puppetry) was extremely useful for

> conversation skills-- LOVED the puppets. The music therapy we

used

> did not resemble the 12/28/98 Dateline show in ANY way! Lizz, the music

> therapist, was a registered therapist with years of training behind her,

and I

> think she would have been disappointed in that show.

>

> also took ballet lessons from age 4.6 until 8.6... This was a

> WONDERFUL forum for her to use and practice her imitation skills,

attending

> skills, and turn-taking skills. It also increased her interactions with

> typical peers.

>

> She participated in a Kindermusik class for two semesters...This is a

great

> program! If it is available in your area, please look into it!!!! I

would

> recommend that the child have some attending and imitation skills and the

> ability to follow simple directions. The curriculum from Kindermusik is

well

> rounded and has clearly been developed by individuals who KNOW about

child

> development.

>

> At age 7.6 began gymnastics...she participated for almost a

year;

> then she became less interested when there was a change in teachers, so

we

> discontinued.

>

> At age 8 she played Bobby Sox softball...she had a GREAT time and loved

being

> a part of a team--like her brothers!!! She wasn't great, but she was

> certainly the team leader in attitude and hard work!

>

> Those are the main things we did in addition to Dr. Jim's program; but

every

> piece incorporated language training--language training was REALLY our

focal

> point, and it was imbedded into all aspects of her life.

>

>

> 9) Did the whole family work on generalization or did you take that on

for

>

> the most part..(I think this part of the ? you have already answered but

>

> here is a second part to the ? ... If the family was involved in

>

> generalization How did you brief them on what needed to be worked on?

> Dr. Partington's method is automatically programed for

generalization--the

> skills are taught in a generalized format. Language training is imbedded

into

> all interactions. We were not teaching to teach one specific task but

> teaching the concept of the task; so the general concept was presented in

a

> variety of contexts. My opinion is that this created a slower

acquisition

> rate of individual tasks; however, without the need for a formal

> generalization of each task, the overall acquisition rate was probably

the

> same. The benefit we saw is that her language use (though limited) was

> functional from the start.

>

> The boys learned right along with us (as did aunts, uncles, and

> grandparents--we provided simplified instructions; no formal training).

They

> learned what motor and vocal imitation was, as well as mands and

tacts...they

> were as excited as we were when she " got " something they presented! At

age

> 5-6 athon even learned what spontaneous and prompted responding was

(and

> of course, what a mand and tact was), and he loved to mark her data

sheets!

> We even taught him (at age 5) to use the video camera, so he could have a

" big

> brother " job! (The Dateline piece had a little segment of athon's

> footage!)

>

>

> 10) Do you know of any families with a child that has Fragile X dx that

>

> are doing ABA? (Lori's son is dx Fragile X)

> Personally, I am not aware if any of the children I have encountered have

> Fragile X.

>

>

> 11) Can you recommend any books that helped you understand ABA and

expanded

>

> your practical knowledge?

> The book, Teaching Language to Children with Autism or Other

Developmental

> Disabilities, is written by Dr. Mark Sundberg and Dr. Partington.

Mark

> and Jim have devoted their entire professional lives to refining the

language

> training process through the analysis of verbal behavior. Their book,

which

> was released in March, 1998, is the result of about 25 years of work.

>

> Another important book is, Behavior Modification, What it is and how to

do it,

> written by Garry and ph Pear. Mark and Jim's book assumes the

> reader has some skills using behavior modification--I have heard them

suggest

> this book to families.

>

>

> 12) Does or Did have any physical problems possibly related to

>

> the Autism i.e. delays in gross motor/ gastro? ( You have already

explained

>

> that she didn't have gastro problems and you have talked about motor

>

> difficulties but can you think of any other " s?

> 's motor-skill development (or lack of it) was our initial

signal

> that something was wrong. Rolling over was delayed (5 months for

front/back;

> and 11 months for back/front), crawling (14 months), walking (16-18

months).

> She didn't go up and down stairs (even the one step down to our sunken

living

> room) until she was well over two years old! Her upper-body strength was

> extremely week--this resulted in difficulty with writing skills (dramatic

> deficits).

>

>

>

> I have a few ?'s of my own that I don't think I've asked

>

> 1) How many hours of instruction per week did receive?

> Since typical children are learning from their environment during all of

their

> waking hours, our family (not necessarily Dr. Jim's requirement--but he

liked

> it!) made a commitment to create an environment where could be

> learning for the majority of her waking hours...our goal was that 90

percent

> of her waking hours she would be engaged with someone, doing something.

This

> could be anything from me actually doing structured teaching (or lessons

as we

> called them) to athon sitting with her during Sesame Street and

labeling

> the characters on the screen.

>

> The formal-instruction sessions REALLY varied... outside staff working

with

> her ranged anywhere from a low end of 4 hours per week to a high end of

12-15

> hours per week. In addition to that she attended play group and/or

preschool

> classes for 6-9 hours per week.

>

>

> 2) Did/Does she have any eating idiosyncrasies or difficulties?

>

> Eating issues have really weaved in and out of 's development.

As an

> infant, she would only nurse--wouldn't accept a bottle until 11 months!

She

> never really ate much of the traditional baby food... From age 1-2 her

eating

> was pretty typical. Around age 2 to 5 (ish) the foods she'd eat were

limited

> (probably still typical--not too different from her brothers!). Around

age 5

> she began to bond with her grandparents (especially Ed's mother <thank

you

> !>); and as odd as this may sound, if Grammy put it on her

plate,

> she'd eat it! Once she tried something and liked it, she would eat it

> whenever and Grammy didn't have to serve it. Now is the best

eater

> of our three children! She will try absolutely anything (she might not

like

> it, but she'll try it).

>

>

> I know this is a lot of questions and I know that you are busy. I

promise

>

> to be patient for a response :-)

> I appreciate your waiting for me to respond to this... I really hope my

> answers can be useful to you and others. There were so many truly caring

> people who helped us along this journey; I feel very honored to

reciprocate.

> I feel that we, as parents, have a special bond with each other and that

our

> children are OUR children--we all have to support each other (sometimes

other

> parents are all some of us have :-( )

>

>

>

> You are the first mom of a (for lack of a better term) recovered child

that

>

> we have had the opportunity to talk to! >>

> We use the term, she's " overcome the obstacles of autism " to explain how

> fits into the category--She personally speaks of autism in the

past

> tense...that was not specifically taught!

>

>

>

> Donna, I hope these answers are written so you and others can understand

them;

> as always, let me know if you need me to clarify anything--it's pretty

late

> again, so please excuse any typos or things that may not make sense.

Take

> care,

> :-)

>

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