new to the list

[Guest guest]

Hi.

I'm new to the list- so I'ld like to introduce myself. My name is n Chen.

My son Isaac has DS and was recently diagnoised with Autism. He had heart

surgery at 2.5 years and have since been slowly changing from a confident child

with GREAT eye contact, GREAT articulation of speech, Great memory and focus (by

3 years knew all upper and lower case alphabets and their sounds, sight read 38

words, knew numbers 1-10 in two different languates)- to poor eye contact, loss

of words, poor articulation, poor focus, unengaging and a lot of self-stim and

sensory seeking/ ocd-like behaviors. The decline was gradual and slow, but

noticable. It's been very difficult to work through all the emotions initially

of DS, then to see him thrive developmentally- get my hopes and expectations

high, only to see him spiralling down.

The eye contact was the first to go. I had a very difficult time convincing his

teachers, therapists, and the regional center that something was wrong. They

all said " it's highly unlikely that he has autism " or " he's just 3 and too young

to engage other kids " . Regional center did an eval. for Autism when he was 3.5,

but said that he wasn't on the spectrum. 2 years later, out of our own pocket,

a developmental pediatrician gave him the Autistic diagnosis.

Isaac has been receiving Floor time for the past year- funded by the regional

center. They refused to fund for ABA or DTT. We are now in mediation with the

school district- they are only willing to provide 30 min./day of DTT at school.

I've spoken with a lot of parents who has kids with Autism. Everyone seems to

be on the GFCF diet, chelation, bio-med regimen, all this DAN stuff. It's quite

overwhelming. I was very involved with the DS community. Now, I'm barely

keeping my head above water trying to understand this whole other world of

Autism. I've heard before Isaac was diagnoised that if your child has DS and

Autism, that parents are more often in the world of Autism- that the " symptoms "

of Autism overtakes those of DS. Is the world of Autism where everyone mostly

presides?

I'm going to the NDSC conference in Anaheim, CA next week. If anyone is going

as well, I'ld love to meet and speak in person. Looking forward to learning

from the list.

n Chen