Add us to the list...

iVillage Member
Registered: 06-12-2009
Add us to the list...
4
Fri, 06-12-2009 - 11:08am

Hi--I'm very happy to have found this group! I have a three year old son and we have been on a diagnostic journey since he was about 18 months old. It's pretty clear at this point that the verdict is going to be PPD-NOS.

So, my son Pierce hit all his motor milestones on time, said his first word "dog" at age one, but then never really acquired much language after that. At 18 months he wasn't pointing or waving, his eye contact was present but extremely low, and he only said a handful of words (but not "mama" or "dada"). He was evaluated and accepted into the state of Arizona's early intervention program and started speech therapy about once a week. Now at three and half, his speech has improved dramatically, but he's still delayed compared to other three year olds. His eye contact has also improved dramatically, but it's far from normal. He also tends to stick with parallel play and his social interactions aren't normal. It's hard to get his attention and he has an excpetionally short attention span. When he was younger he "tippy-toe" walked and I saw him flap at least twice. He's very sensitive to being over-stimulated and, when he was younger, would cover his eyes or ears.

What keeps him off the Autism spectrum is the fact that he does not "over-focus" on activities, has no repetitive behaviors, only very, very mild repetitive speech, plays with toys normally--engages in imaginative play, and he's very affectionate.

We just saw our second developmental ped yesterday and she confirmed that he is not on the spectrum, but neither is he normal. she thinks he'll probably qualify for preschool services and we are trying to get him into the school system, but so far no luck with the hearing test (he flat refuses to cooperate).

So that's where we are. I'd be very interested in meeting other parents who kids have similar issues or even other kids with different symptoms because at some level I think the coping skills are transferable!

I happen to be a Ph.d and I work for a major national charity that covers a different set of diseases so I may have a slightly different perspective. I already checked out Autism Speaks and didn't feel like they had a lot to offer those of us dealing with PDD-NOS, although their materials looked better for Aspergers.

Anyway, sorry this is so long--whoever started this group, thanks so much! I'm glad I've found you.

Sharon

iVillage Member
Registered: 10-03-2004
Sat, 06-13-2009 - 9:08am

Hi Sharon,

and welcome to the group. I have a son with PDD-NOS who will be 12 in a few weeks and we have a similar story to your early years except that your son showed signs much earlier than ours. Although he has gone through periods growing up where he had more repetitive-type behaviors, he has always been social and his speech is unusual but appropriate.

We are sometimes slow to get down to this section of the board, but you will find this is a great group to belong to, so post away, ask questions, jump in on any thread, and let us get to know you and your wonderful ds even more.

yours,

Sara

iVillage Member
Registered: 09-12-2008
Sat, 06-13-2009 - 11:32am

Hello and welcome to the board. My little guy is close to your age. He was dx'd with pdd/autism disorder at 3.2 years...but more recently we got a dx of pdd-nos or autism spectrum disorder.

He still has ST every week and we are just starting wraparound services.


Jessie mommy to Gabe(4.3 years ASD/CAS/SID)and baby Zane

LilypieLilypie
Photobucket

PhotobucketPhotobucket

PhotobucketPhotobucketPhotobucketPhotobucketPhotobucket



Jessie mommy to Gabe(5 years ASD/CAS/SID)and baby Zane (1 year old)



Visit my blog


iVillage Member
Registered: 06-12-2009
Sun, 06-14-2009 - 10:05am

Thanks for the responses! Very helpful to find a group of parents dealing with these issues. I'll check out the messages at the top of the page...

Sharon

iVillage Member
Registered: 03-26-2003
Tue, 06-16-2009 - 1:24pm

Wow, had to respond to your post because it is so familiar.

My 15yo's first word was "dog" (about 15 months) she had maybe 5-10 words at 18 months but no "mama" or "daddy" until after she was 2 years old. My other spectrum guy (13), his first word was "cookie" and mama and dada were much later too. However, my 2 typicals thier first words were mama and dada. I wonder if someone should study that as a possible early clue to ASD issues since they seem to be more connected with objects than people.

Welcome to the board. I wonder why you don't consider PDD-NOS on the spectrum. Most do consider it part of the autism spectrum of disorders. Typically, they don't meet the full criteria for autism but they are on the wide spectrum that is autism. Just curious. Cait was first DX'ed PDD-NOS because they didn't know if her language delay caused the social issues or if all of it was caused by ASD. It wasn't until she was older that she was given the autism/asperger's diagnosis (she's had both).

Doesn't really matter now. They are just Cait and Mike who happen to have ASD but each version is unique to each kid so we just go with ASD to keep it easier.

At the tree Tunnel

APOV on Autism
Photobucket