New Here

Hello,

I'm Spring and I have a 9 year-old daughter who was diagnosed with PDD-NOS just last summer.  Since she was a baby I knew something was off but couldn't get her diagnosed.  She would always fall over backwards when sitting down so I took her to the pediatrician who referred her to a neurologist.  The Neurologist diagnosed her with Begnign Congenital Hypotonia then and sent us to outpatient OT and PT when she was 2 in addition to other testing because he got a really low read on her reflexes.  All the tests came back normal.  She didn't start talking till 3 years-old and we could barely understand the handful of words she said.  She was very complacent with everything and everyone and never thew fits at all she was a super quiet toddler.  I had her tested and she qualified for the for the L.I.F.T. program where they stated her eligibility was Speech and OT within the Redondo Beach Unified School District.   Even with the constant statements from the teachers that there was a cognitive miss and she had to be directed to interact with other kids they the school district left her eligibility as it was.  I didn't know any different and believed they had the best interest of my daughter in mind since I had never been through any of this and had no other diagnosis other than Hypotonic. 

As she's gotten older and we are now 6 years down the road with a 9 year-old little girl who still has a hard time with 2+2 and can't tell you 1+1 from memor, now they are starting to hear me.  She is developmentally 5 years old and still only speaks in the present tense not using past tense at all.  I have two other children an 11 year-old son and a 2.5 year-old son.  My 11 year-old has had it with her repetative conversations and fixations and isn't nice to her.  She and the baby fight over toys and he sees her as different too and doesn't really want to play with her because she's rough and is always in his face talking very loudly.  As many times as I had noticed my daughter's repative and random conversations, the teachers and district never recognized it as any sort of an issue or noticed it.  My ex-husband was in denial and thought she would outgrow things but now sees my daughter who is becoming a big girl physically but still mentally so small, can't deny it any longer.  We received two different diagnosis because Remi has so many different issues.  She isn't "classic" anything but displays some of the characteristics and behaviors that are on the spectrum and that's why they gave her the diagnosis PDD-NOS.  She is very good when it comes to manipulating but she is really immature in so many things.  She is a little girl in a big girl's body.  She also has a high pain threshold and doesn't realize that she is as big as she is. 

I still feel at a loss sometimes because some of the things that come out of her mouth almost seem like she knows what she's doing but she just seems to lack control other times.  Incentive works till the prize is won then we are back to toddler-sized tantrums whenever something doesn't go her way like haveing water instead of milk .......... little things trigger her and then it snowballs into a full-blown episode that can last for up to an hour of spewing. 

I am so happy to find a forum that I can discuss, share experiences and gain wisdom....

Thank you.........Spring