Re: Question re; tx choices

[Guest guest]

Hi..An ABA program doesn't have to cost 40-50K a year. It depends on how

many hours you do. Ours cost more like 10K for 10 hrs. per week. a good 40hr

program will probably cost 40K a yr though. However, Babies can't Wait have

just revised their " plan of action " to include ABA therapy for children on

the spectrum ( a good start...they have covered it for a while but you used

to have to ask for it..now they are offering it...I am hoping that this will

put more pressure on the school districts to provide it ) bcw will cover 15

hrs per week I believe & will pay $8.00 per hr. for therapists & $35.00 for

consultants. Nowhere near as much as they charge but its something to help

parents out. For my son, ABA was by far the most effective teaching method.

We did the GFCF diet twice & it didnt seem to work & we also do

vitamin/supplements which do help a little. Speech & OT are important

supplements to compliment ABA. but a couple of hrs a week of each is not

enough for autistic children. I believe they need intensive 1:1 therapy to

start. There are 2 consultants that I can recommend. email me privately to

get names/#'s. They can get you started. Where are you located? I hired my

therapists thru word of mouth but I know many parents who put an ad. in the

local paper & called local universities. Expect to pay therapists $8-$20.00

per hr. Ivan was diagnosed autistic. He no longer meets criteria. He still

is shy & struggles some socially & with play but ABA saved him. His language

are now in normal range , as are his fine & gross motor skills. We are

almost there regarding play/social skills but these are harder to teach.

Jake is young so you have lots of precious time to help him. I no longer go

to drs. I figure out what's best for Ivan myself. By the way, on a different

note, Is anyone familiar with Moby Childs & his super summer camp for kids

with Aspergers? Good luck . Annette

Question re; tx choices

> Hi! I am back after a mini hiatis. I posted awhile back after being told

my

> son was autistic by his neurologist. I was just getting used to dealing

> w/that dx when the MRI results showed 2 brain disorders..... PVL

> (periventricular leukomalacia) and Chiari I Malformation. At that time

neuro

> said lets hold off on autism dx until we get consult from neurosurgeon.

When

> we went to surgeon we were prepared to have the decompression surgery and

> hoped that once it was done Jake would be typical and okay. Well the

surgeon

> said let's f/u w/MRI's and re-evaluate in December. We were thrilled since

we

> were sure this was the answer to why Jake had autistic characteristics.

This

> hope was short lived since surgeon said only the language delays and low

> muscle tone/dysphagia *might* be due to the Chiairi/PVL. So, now we are

back

> to this mysterious disorder called autism. To say I am overwhelmed and

lost

> is a severe understatement.

>

> Right now I am spending every spare second trying to research tx options.

> There are so many different approaches that I don't know where to start.

For

> now I have ruled out chemical ones like the IviG or however you write that

> and chelation. I'm not saying we will never be open to trying these

options

> but just not quite yet. Before those options I would try vitamin therapy

and

> GFCF diet since I don't think those would hurt in any way. Basically where

I

> am struggling right now is which treatments like ABA, DTT, AIT, etc... are

> the most effective. Jake has been receiving the traditional speech,

> occupational and physical therapy for months now (since Jan) w/o

improvement

> except in the physical tx area.

>

> I feel that the lack of success is due to Jake's lack of 1) eye contact 2)

> attention and 3) lack of comprehension. I feel like we are trying to teach

a

> deaf, blind child how to talk and sign. There has to be someone out there

(I

> pray) who has had a child similar to this who have had success in 1 or

more

> of the available tx's???? Just comparing therapist styles I can see that

Jake

> responds better to the OT who has a firm but not cruel approach better

than

> he does the sweet nuturing approach of ST that we just let go. But

honestly,

> he hasn't made great gains w/OT either.

>

> I have been seriously considering setting up a home based ABA program or

> finding one to take him to in the Atlanta area. But I am clueless how to

do

> this. And most importantly how can we afford it?? I have heard it costs

close

> to 40-50k a year. Jake is part of the Babies Can't Wait program and has

> recently received the KB deeming Waiver. We also have insurance coverage

for

> PT and OT. But so far none of these cover ABA or similar tx's. Has anyone

> done the ABA either in or out of home? How did you get started and how

much

> should I expect to pay? And even more importantly, was it successful for

your

> child?

>

> I am open and eager to hear of any and all effective tx programs and

options

> any of you have used. I feel so utterly incompetent to be making such huge

> decisions w/o the experience or background I think one should have to do

this

> job. But after multiple evals and multiple specialists it is clear to me

that

> no one is going to say what I want to hear which is.... We have performed

a

> variety of tests and observed your child thoroughly and this is *exactly*

> what is wrong w/your child. This tx is going to be the best type for his

age

> and developmental level. This is who you contact to get this tx started.

And

> this is how much it costs. And this is where you can find the resources to

> provide this tx for your son. Our ped suggested we see a dev. ped but

after

> talking to them it just seems more of the same for a out of pocket cost of

> 2k. At this point I am not interested in another dx or even a

confirmation. I

> know he is autistic even though I don't want to know it if that makes

sense.

>

> I'm sorry to take so much time and space but I am sure you can all relate

to

> how desperate I am/feel.

>

> Any input and advice on tx's, local docs, providers, anything at all would

be

> so greatly appreciated. BTW, Jake will be 20 months old the 19th of May.

>

> Thanks for listening,

>

> Beverly

>

>

[Guest guest]

Beverly,

My name is Sally and I have a son, age 7, who was diagnosed at age 4 with

autism. However, we knew from age 4 months that he had some structural

abnormalities in the brain. He has agenesis(absence) of the corpus callosum, a

repaired encepholocele, and the vermis in the cerebellum is 90% compromised. We

were always prepared for a child with moderate MR. He was globally delayed and

seemed to fit the pattern of what we thought a MR child would be like until he

started at Challenged Child and we saw him with other children who were special

needs. He definitely was VERY different from them. He had lots of scatter skills

and SEVERE social and language impairment. When we got our diagnosis I was

shocked. I had always assumed that children with autism were perfectly normal

children who all of a sudden began to lose skills. Through research on the

internet and other places I learned that a certain percentage of children with

autism have a structural abnormality in the brain. Most of these have problem in

the cerebellum area. I would love to talk with you and let you know some of the

thing we have done with . He started talking at about 4 1/2 and learning

to read this year, and is constantly amazing the doctors. You can email me at

work at sfralix@... or at home at sfralix@... and I will

give you my phone numbers. Hope this info helps and gives you some hope!

Sally