Re: Hi from a newbie

[Guest guest]

Hi ,

I've called UCSB and the receptionist said that they might be able to

help us after we've been formally accepted by TCRC. TCRC said that

they have now put us on UCSB's waiting list. I'm hoping that the

Koegel program will be able to benefit older kids. When I called the

Koegel center when I first suspected autism years ago, they didn't

even return my calls and I supposed it was because we didn't have a

formal diagnosis of autism at the time so I became very frustrated

with UCSB.

As for a SC, we haven't been assigned anyone, yet. Others have told

me that, basically, I'd better have a good idea of what we need and

want and then be prepared to fight for it. Sooooo, I need to find

out if there are any others who have ever entered into the system at

this late date and what they did that was beneficial (and what wasn't

for them and why).

It wasn't until a couple of years ago that I discovered our local on-

line autism group and found out that all the experts I had consulted

were wrong about Prozac and medications being the ONLY possible

treatment (since the Koegel institute was only for confirmed autism

and at the time we had PDD/NOS diagnosis and they weren't interested

in us). At any rate, better late than never....

Sheila

>

>

> Hi Sheila,

>

> We're in Ventura County (Newbury Park), so we also go through

TCRC.

> My daughter is 8. Have you spoken to anyone at the UCSB Autism

> Center? My daughter went through the Koegel PRT program there and

> they might give you some ideas and help steer you in the right

> direction up in the SB area. We've got some great programs down

here,

> but I'm not so familiar with what you've got up there. Do you have

a

> good SC through Regional Center?

>

> Take care,

>

>

>

[Guest guest]

Hi Sheila,

Are your children still in a public school or have they graduated?

It sounds like your daughters might have been at grade level in terms

of academics. I work in an elementary school, but we have several

students on the autism spectrum who are pretty much at grade level

for academics. These students might receive in class or out of

classroom support through their IEP's for behavioral coaching, social

coaching, or academic coaching (when things are abstract or might be

understood literally and they need some visual strategies or further

explanation to understand). I was just wondering if your daughters

were still in school because services are provided from birth to age

21...usually in a transition program following graduation. If

they've already graduated, I am not sure though how that all

works... Rhonda

>

> Greetings,

>

> I'm the mother of twin girls, 18, who have had a recent diagnosis

of

> autism (and prior diagnoses of Asperger's and PDD/NOS). Now that

we

> are finally being seen by our Regional Center, I would appreciate

> input as to what programs might be beneficial for older

kids/adults.

> Do any of you have any experiences for this age group?

>

> Let me give you a brief bio of our romp through the medical and

> educational communities.

>

> There were " soft signs of autism " from infancy. The girls didn't

> look in my face when nursing, didn't explore, and didn't always

turn

> towards their name or noise.

>

> When the girls were about 3.5 yrs old, we had them evaluated for

> autism (which turned out to be one of the worst experiences of my

> life). The doctor's diagnosis was that she didn't know what the

> problem was but it must be something that I was doing.

>

> At 8 yrs, one girl was seen by a psychiatrist who diagnosed

> PDD/NOS. She was the first one to say Prozac was the treatment (with

> no further suggestions). This was also my first round of talking to

> the school, where the special ed. teacher said that my daughters

> didn't have autism, it was purely behavioral, and there would be no

> place for school assistance. I didn't know enough to realize that I

> should start at the top of the educational chain rather than the

> bottom. I think this was the first time I contacted our regional

> center, but didn't make it past the receptionist. Since we didn't

> want to do Prozac, and the school wouldn't help, I was stymied.

>

> Age 9 -- diagnosis by development expert of twin symbiosis.

>

> Age 15 -- diagnosis of anxiety with underlying autism by

psychologist

> (who sent us to a different psychiatrist) and tried hypnosis.

>

> Age 16 -- evaluation by psychiatrist with diagnosis of Asperger's

> Syndrome or PDD/NOS. He, too, only suggested Prozac. This was when

> I also really really tried to get some help from the school

district,

> but they ended up just suggesting I go to our regional center (and

> also gave extra test time). There were no transition or other

> services available in our district. Of course, at our regional

> center, I didn't get past the telephone receptionist.

>

> Age 17 -- saw a different psychiatrist who seemed to agree with the

> last one, but without giving a complete evaluation. His only

program,

> also, was for medications.

>

>

> age 18 -- thorough evaluation by a psychologist at California

> Institute of Technology because the girls signed up to be research

> subjects for autism research the school is conducting. This was

> actually the best and most thorough evaluation they've had, and the

> diagnosis was autism (not Asperger's or PDD/NOS)

>

> age 18 -- meetings with local psychologist and physician (whom I

> met through TACA), both of whom said they thought a diagnosis of

> autism and not Asperger's would be correct and that I should be

seen

> by our regional center.

>

> age 18 -- finally fought my way past the TCRC receptionist (who once

> again said that if there were no academic difficulties, then it

> wasn't a TCRC problem) and was given an intake appointment. Last

month

> we had the psychological evaluation and the diagnosis was autism

> with the suggestion of TCRC assistance (with the evaluator

wondering

> why we hadn't applied before -- ARRGGHH). So, now, 15 years after I

> first tried to get help for what I was sure from my own research

> would be considered something on the autism spectrum, I think we

> might be getting somewhere (if I continue to push and know what to

> push for!) Do I regret having lost 15 years of help? YES!

>

> Your input is appreciated.

>

> Sheila

>