Suitable program for

[Guest guest]

This is yet another desperate plea for any information out there relative to a

suitable school program for our 8 year old son , whose diagnosis is

PDD/Autism, Hypotonia+. For the last three years, he has been in a special

education program through BOCES (Board of ative Education Services) using

the TEACCH method. This program was initially working while attended

preschool-level classes but since then, we seen no notable progress.

(There is a lot of bureaucratic bologna going on within the school district and

with contractual issues with the BOCES program for various therapies and the

program itself is administratively top heavy. This of course, does not serve

the best interests of the special needs children involved.)

As background,, functions on a fifteen month to two year old level. His

present program is very rigid in that there is silence in the room for the most

part and children are not verbally/vocally motivated or encouraged. The only

accomplishment by the teacher thus far (in 3 years) has been to teach to

hand back an empty plate for a refill. will age out of this teacher's

room by Sept. 2002, and we have no idea where to put him next. How we wish we

felt qualified to home school him and/or find someone who is qualified to come

in and spend one-on-one time with him which we feel would be the most effective

route and way to teach him.

also receives occupational, physical and speech therapies through this

program as well as visual consultation. In print, his IEP (individual education

plan) is a work of art. Yet it does not seem to be the 'ticket' to providing

whatever it is that needs to progress,, if he can progress; and at what

point do parents and physicians, professionals and the like, decide that no

progress can be made?

Unfortunately, we have found that programs and/or services for such children

remain 'top secret' unless we are referred by some compassionate and/or informed

individual who has either had experience in this area or has become of aware of

a potentially suitable program.

Along with all of this of course, seems to go the issue of school personnel's

unwillingness to deal with the behaviors connected with autism. While it seems

important that these children behave 'normally', there is nothing normal about

their behaviors and, they're like the 'girl with the curl'--very good or very

bad. With this in mind, it would seem somewhere out there, are people who can

deal with such and thwart some of the energy involved in the 'stimming'

behaviors into healthier exercise which would have the same sensory effect for

the patient/child involved.

Perhaps all of this sounds like we're letting off steam, but trust us when we

say, although we're tired,, we've been patient and continue to try to keep our

son in school program all to no avail only to have him repeatedly sent home

because they feel he's potentially ill and/or 'off' and they choose not to try

to cope. There are times of course, when he is sent home to an already stressed

situation because of exhaustion of parents from being up nights and dealing with

his 'bizarre' and 'unruly' behaviors, 24-7. Of course, there are times when he

is genuinely ill as well.

To sum it up, we feel that there has to be a program available--in and or near

the Elmira, NY area which would be more suited to our son's needs and if

not--would someone please tell us that too? Do we just put him on a shelf and

say--don't bother--he's retarded and will never be a viable citizen or what?

Shirley & Ted Semesky

Elmira, New York 14901

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[Guest guest]

Shirley & Ted,

Our son sounded pretty much like your son when he regressed around

age 3, he is now 5 and in K. I believe in GFCF, Feinigold, ABA, and in

our case chelating toxic metals. The very best thing we ever did and I

highly recommend is to get a Behavior Therapist as a family consultant.

We bit the bullet and it is now paying off with the school district. She,

consultant, is now interfacing with the school and doing the tough job of

making them get their act together. ' situation is both good and not

so good. Good: small ratio (5 kids, 1 teacher, 1 aide) & he's one of the

lower functioning in the class so he has some good verbal, academic

models. Not So Good: The teachers do not know what they are doing,

is regressing behaviorally and so there is little academic work going on.

He is a smart little boy and he can play the system, ie: make them chase

him (his favorite game), get their attention in negative ways! The

consultant has helped me do ABA in the home so she knows ' progress

and my expectations for him and the school. She has visited the school &

observed even more that's not good. She has given the school 3 weeks to

show noticable improvement. She has had the autism specialist for the

area work with the teacher on 3 ocassions that I know of, but the

situation is still not turned around and she has " forbidden " me to go

visit the classroom because she is aware of how irrate I would become.

The problem is that any other classroom he could transfer to is even

worse! I could not do what she is doing for right now. I need

someone to go play hardball that has some name recognition in the area to

battle for me. I am more comfortable sitting back and letting her handle

this because I know myself well enough that if I were to try and handle

this I would destroy any potential I have for ' future in this

school district. This got longer than I anticipated. This is just what is

currently helping us. Best wishes in your frustration with the school,

Sharon in Virginia

This must be common logic for school systems....It happens here also.

>>>>> (There is a lot of bureaucratic bologna going on within the school

district and with contractual issues with the BOCES program for

various therapies and the program itself is administratively top

heavy. This of course, does not serve the best interests of the

special needs children involved.)>>>>>>