We have the diagnosis-NOW WHAT??

[Guest guest]

Hi-I am a " lurker " -I read posts every day, but often do not post

myself-I tend to get long winded and I could probably type forever.

But I was hoping to get some advice from anyone willing to help. My

son has Mosaic Down Syndrome and was just diagnosed with moderate to

severe autism. He is 3 1/2. I started noticing he was " different "

from his DS peers at around 18 months or so when he started in on

tons of stems and self-injurous behavior. At the time we were

getting therapy through ECI and I asked every one of his therapists

if they thought some of what he was doing was autistic-like behavior

and I the nutritional therapist (who has two grown sons with autism)

told me that DS kids can't have autism-HA! Anyway, the diagnosis has

been a long time coming. We got our diagnosis at the Child Study

Center of Fort Worth, but the school had to do their own assessment

and they were skeptical of the diagnosis of autism. They thought he

just had a " really bad case of DS " . But I did receive a phone call

and we finally got the diagnosis from the school-they concurred with

the child study center.

So...now we have to decide what road to go down to get Carson the

best help. Do we put him in a private school that gives intensive

therapy (expensive), do an in home program or push the school

district to offer more services and help? The school district that I

am in is pretty good and he is going there for half a day to attend

the special ed classroom-but when I talked to the diagnostician at

the school yesterday she was very vague as to what additional

services he would qualify for and she told me that due to Carson's

age and situation they probably wouldn't do a lot different. WHAT??

Why did I work for 5 months (Yes, it took that long to get the

assessment completed) to get the assessment and the diagnosis? Is

this a normal attitude to have? My husband and I feel like the clock

is ticking and every day we spend trying to figure out what road to

go down we are losing him more and more.

Any advice on what worked best for you and your family?

Also-totally different subject-but besides the chat room-how do you

deal with the day to day? Are we talking

medication...therapy...yoga...? I only ask because while I do a

pretty good job of dealing most days I definitely have my breaking

points. Like the time last week that I made the medical insurance

customer service agent cry because we were being turned down for

speech therapy because Down Syndrome is not a good enough reason to

need it. So I broke and freaked out on her and she cried. Not my

proudest moment...

So...what works for you????