PDD-NOS

Laura - posted on 02/18/2009

Read anything and everything you can get your hands on. But here are some of my favorites: The Out of Sync Child and The Out of Sync Child has Fun. ( I just got them but definately are helping understand.) Also A Friend Like Henry and A Cup of Comfort for Parents of Children with Autism. I have many others that I have read, let me know if you would like more titles.

Kimberly - posted on 02/17/2009

Thank you both, SO MUCH!!!  :)   I searched for books on the topic and was overwhelmed by the amount of literature out there... the Tony Atwood suggestion really helped narrow things down!!  We are busily coming to terms with things... the obvious is that we love our little guy as he is and wouldn't change a thing.  The struggle is thinking about all the people's paths that he'll cross that might not feel the same way.  And, what really hit home with us is that he already hit his first bump in the road at the ripe old age of 3!!  I enrolled him in a private preschool this fall for the purpose social interaction (I work part time and am fortunate to leave him and my other son w/ my parents... a great arrangement, but doesn't give much interaction w/ age peers)... his preschool teacher struggled with him from day one... kind of surprising (I felt b/c of his "rigidity"/love of structure and love of learning that he'd do well)... she was really, completely ill-equipped to handle anyone who might march to the beat of a different drum, let alone someone who might be on the spectrum.  She gave up on him pretty quickly, w/o really trying any modifications for him... that was hard pill for me to swallow-- not only b/c I am an educator and would never do that to a child, but also b/c he's my little guy and it got to the point where she pretty much wanted nothing to do with him (there was NO rapport there... think he sensed her feelings towards him)...  On the positive side, I do have to be thankful that we put him in the school and that he "failed" (we pulled him out b/c it became obvious that it wasn't a good situation for ANYONE), because it is now looking like he is going to get the support that he needs to have at least a year of a preschool that is "right" for him before we send him off to kindergarten.  And, it taught me that I need to be a stronger advocate for him (I like how Karen put it-- a quarterback).  We have been fortunate, thus far, with our county... they see his need for services and our need for their guidance.  Although it has been a rough 6 months, I am finally seeing the light at the end of the tunnel (or at least our FIRST light as I do know we have many challenges ahead).  We will be taking things one step at a time... I have seen, first hand, being in the school system, what can happen if kids move all the way through elementary school w/o appropriate services... while that certainly scares me b/c I don't want such things to happen to my little guy, it really motivates me to make sure that he is getting what he needs from all of the people in his life.

Thank you both, again, for the book suggestions and warm words of encouragement!! 

:) KL

Kimberly - posted on 02/17/2009

Thank you both, SO MUCH!!!  :)   I searched for books on the topic and was overwhelmed by the amount of literature out there... the Tony Atwood suggestion really helped narrow things down!!  We are busily coming to terms with things... the obvious is that we love our little guy as he is and wouldn't change a thing.  The struggle is thinking about all the people's paths that he'll cross that might not feel the same way.  And, what really hit home with us is that he already hit his first bump in the road at the ripe old age of 3!!  I enrolled him in a private preschool this fall for the purpose social interaction (I work part time and am fortunate to leave him and my other son w/ my parents... a great arrangement, but doesn't give much interaction w/ age peers)... his preschool teacher struggled with him from day one... kind of surprising (I felt b/c of his "rigidity"/love of structure and love of learning that he'd do well)... she was really, completely ill-equipped to handle anyone who might march to the beat of a different drum, let alone someone who might be on the spectrum.  She gave up on him pretty quickly, w/o really trying any modifications for him... that was hard pill for me to swallow-- not only b/c I am an educator and would never do that to a child, but also b/c he's my little guy and it got to the point where she pretty much wanted nothing to do with him (there was NO rapport there... think he sensed her feelings towards him)...  On the positive side, I do have to be thankful that we put him in the school and that he "failed" (we pulled him out b/c it became obvious that it wasn't a good situation for ANYONE), because it is now looking like he is going to get the support that he needs to have at least a year of a preschool that is "right" for him before we send him off to kindergarten.  And, it taught me that I need to be a stronger advocate for him (I like how Karen put it-- a quarterback).  We have been fortunate, thus far, with our county... they see his need for services and our need for their guidance.  Although it has been a rough 6 months, I am finally seeing the light at the end of the tunnel (or at least our FIRST light as I do know we have many challenges ahead).  We will be taking things one step at a time... I have seen, first hand, being in the school system, what can happen if kids move all the way through elementary school w/o appropriate services... while that certainly scares me b/c I don't want such things to happen to my little guy, it really motivates me to make sure that he is getting what he needs from all of the people in his life.

Thank you both, again, for the book suggestions and warm words of encouragement!! 

:) KL

Karen - posted on 02/14/2009

Kimberly, I agree w/ Debbie - social skills will become very important, and finding the right fit may take some trial & error - we're in the midst of that now. Also, I found it hard to explain to O WHY he was different, once he became aware of the difference - around age 6-7. Try to stress the positives of his differences - to yourself and to him. Reading / talking about people on the spectrum who've been successful has helped a lot. We have also run into some trouble with teasing, but have tried to be proactive without over-reacting to it. Our school has been really great in helping to watch out for him at recess. And he does have some very good friends, which helps too.

You're probably pretty far from having to worry about that quite yet. The most important thing is to remember you're not singly responsible for helping your son. You have to be the quarterback, but remember you're playing on a team - the SLP, OT, adjustment counselor, classroom aide, teachers, principal, doctors, psychiatrists, nutritionist, social skills group facilitator, whoever you decide to work with - they all need to know what you're running into at home, and you need to know what they're seeing in their interactions with your child. I can't tell you how many times one of us has stumbled across some stratgey that works - which has solved another issue that O works on with a different team member. This is not to say that coordinating all these things isn't exhausting and frustrating sometimes, too. But I usually feel better knowing somebody's got his back.

Debbie - posted on 02/14/2009

Hi Kimberly! My Aspie son is now 18 and was first dxed with ADHD in 1st grade. We got the PDD-NOS label when he was in 4th grade...and then finally Asperger's when he was in middle school. He has been in the mainstream all along and it has been a very long haul. Once he got into high school, it got better as his peer have matured to the point of accepting him as the tender-hearted soul that he is (that isn't exactly valued by younger peers who are trying to prove themselves...bullying was a daily heartache here for many, MANY years).

As we have had quite a few different labels, I have learned not to focus too much on them, but to make sure that he was getting what he needed...from the doctors, therapists, school, etc. I did a lot of reading in the early stages...as you are preparing to do...and the "Out of Sync" book that Karen suggested was a good one. I also did a lot of reading on Tony Attwood's site (google it) which lead to many other great resources. You'll also want to check out the OASIS site (and book) and eventually Wrightslaw to help you though the Special Education maze.

It's going to be a long and rocky road. Early intervention is the key and you have certainly found out early enough to make that happen. Focus a LOT on social skills. In the end, it won't matter how much education he has if he doesn't know how to get along with other people. Aspie's can be TAUGHT how to interact, but not to pick up on social cues just by being around other people. It was very difficult to find the right social skills group here in my area...one that focused on the skills that Aspie's lack. Putting him in a group with children who had ADD/ADHD wasn't good enough. Having him sit through a "lunch bunch" session in Elementary School was a joke. Arranging to have him sit with a Social Worker for lunch in Middle School wasn't quite right either. You'll find that Aspie's have no problem getting along with adults & children younger or older than they are. It's their peers that they just can't get along with. Sorry...I'm rambling...and your son is so young that these problems probably aren't presenting just yet. I just wanted to stress how important it is to try to find some social skills training group geared to Asperger children as soon as it seems appropriate. FYI, 4th through 6th grades were the worst...so you have some time.

One day at a time...pace yourself...follow your Mama's gut. That is the best advice I can offer you.

Hugs to you as your guide your precious little one.

Kimberly - posted on 02/13/2009

Thank you so much for taking the time to respond... we're still kind of "floating" out there... My son will be four next month... the developmental ped doesn't want to officially diagnose, but has put us in the PDD-NOS "ball park" (as he called it) with possible other issues... will follow us for a couple of years.  The school system, which is in the middle of their eval, is thinking Asperger's... I guess high funtioning autism is a safe conclusion!!!  And, from the sounds of it, the label is simply that... a label... and what that looks like for one child can be very different from the next.  Anyway, thank you, again, for responding... do you have any other thoughts/advice from your initial diagnosis time... especially anything in particular that you know now that you wished you'd known then?  It looks like from your profile pic that you have two boys, too?

Karen - posted on 02/09/2009

HI Kimberly. My son is 9, was diagnosed with PDD-NOS at age 3. I found any books ref. High-functioning autism or Asperger's to be most helpful; Tony Attwood is good. Also the "Out-of-Sync" books were good for sensory issues. And there's a fantastic blog: http://momnos.blogspot.com/. This is all just the tip of the iceberg; every kid on the spectrum is different, so you'll have to see which challenges come up for your son or daughter.