OT confused about diagnosis-long

[Guest guest]

I need some opinions about what people are telling us! In March, Jane

was diagnosed PDD-NOS by a prominent Houston developmental specialist

and by a pedi neurologist. Since then, her Early Childhood

Intervention speech teachers(she's had 2)say she isn't PDD or if she

is it is sooo mild. The sensory integration therapist, again the best

in Houston, has worked with 100s of ASD kids and says no way is Jane

PDD, that diagnosis was too strong. Our family, whom we only see once

or twice a year, actually brought up the " A " word in March. We have a

speech path,two doctors and two nurses in the family who said they

have wondered for some time if there was something " going on " . My

husband and I KNOW she is ASD. Why is it that we have to convince

therapists that she needs help? They are dropping her speech to once

a month bc " for an ASD child she very verbal " . So, we are finding a

private therapist. How do you explain that she has never connected

with us, arched her body when we would pick her up, prefered laying

in the crib for hours as an infant,can't socialize, bites,

tantrums...I could go on and on-you all know the signs. The SI

therapist explains each thing I bring up with SI stuff-she has an

answer for everything. I love SI and it's been working great, BTW.

We, like many, didn't realize just how " different " Jane was until our

son came along 20 mos later. He was teaching her peek-a-boo, shaking

her head " no " , and game back and forth play. I got an advocate

through ARC today who will help us throught the ARD process as the

school is pushing for a diagnosis of speech delay. " Then she would

only have to come twice a week for an hour! " That's good?! I asked

how the school could overstep two doctors? Yes, she has improved

significantly in the past few weeks, but, as my husband said, " Feed

her a grape and she'll be crawling on the floor licking your feet. "

Honestly. We are fighting this and will win, I am sure, but it makes

me feel so unsettled to NOT KNOW! I know I am not supposed to focus

on the lable, but it's hard to do when you have to convince people

she is ASD and at the same time accept and move forward! These

therapists have only worked with her one on one and are not telling

her to do something she doesn't want to do. Which of our kids

wouldn't love that?! Anyway, sorry this is so long, but I have been

wanting to ask you all for some time. I hope some of you aren't

offended. I am not whining. I am grateful Jane IS so mild, but just

feel so unsettled. I can't explain it. Does anyone out there

understand this or gone through this? Could the therapists be right?

A mother knows these things,I feel, but I want to do the best for

Jane and proceeding with the current diagnosis of PDD is our best

option, I feel. Anyone...

Thanks,

Janelle