Trying to learn more about PDD-NOS
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| Fri, 03-03-2006 - 11:05am |
Hi I am new here I have an 11 year old son who has been through so much physically and now we have been working more on the mental side.
He has a clubfoot and he has a history of Hirschprung's disease when he was a baby. He also broke his leg when he was 7 years old riding his back. In his life time he has had 6 surgeries for his various problems, mostly for his clubfoot and his leg. He also has generalized low muscle tone.
He did receive early intervention from 2-5 for speech and PT. Speech because he was not talking at all when he was 2 barely any words. Started PT at 3 to catch him up from his surgery for correction of a tibia torsion due to the clubfoot and he spent 6 months in a cast. So it szet him back physically. He graduated from tthos but now he is recieving OT for his fine motor skills.
Josh is defintely a quirky kid and always been. He is small for his age. Looks more like an 8 year old rather than 11.
When he was a baby and walking my parents used to call him a little old Jewish rabbi because he just always walked around so seriously.
Now for his behaviors that are quirky.. Very focused on things not to pertaining to subject at hand. We can be discussing plans for that night ad he will start talking about or rather start worrying about a trip he might take with scouts next month and will focus on just that. He also will repeat the topic 50 times despite the reassurance that he will. We even give him straight out answers or threathen the loss if he keeps repeating the subject. He will get very focused on one video game and not always advance. In school he is always worried that some one else will forget his schedule and will constantly ask about it (this has gotten better) He is always telling me what he needs to do in the bathroom. Who needs an 11 year old telling you he is going to poop or pee. He says he thought we szhould know. He has a hyard time with his peers, he deals with it by ignoring the kid but Josh many times seems to prefer to be alone rather than dealing with other kids because you can see he does not always pick up the social cues. I have him in a social skills group at school to help this. He is in 5th grade in a new school which is the middle school for us and it has open clasrooms. Not a good thing for him.
Josh has a hard time focusing at the tasks at hand. Completing the jobs. Has calledout about things not being discussed.Acts younger thanhe is etc. We do have a diagnosis of ADHD on him and have him on Concerta 36mg. There is some differencve but not enough and I really don't want to increase the dose because I don't think it will solve all the problems. Like not washing his mouth after he eats and leaves traces of it around his mouth. Not liking to be touch. Being very skidish and afraid. He will not pick up our cat and does not like to be hugged. he will also lie about what jobs he needs to do or not do. He is very impatient..I can keep going.
I have a friend whose oldest son age 18 has AS and I ask if she sees any similarites. And although there are small simialarites. Josh is not at all like her son. And her son is considered high functioning. And my son will interact with his enviorment and wants to be involved.
I have been taking him to a developmental ped. to getthe ADHD diagnosis. And have advanced to a neuropyshcologist for the other things not right. Our insurance does not cover mental health so I hope they will cover this. T%he school district can only test for so much. I feel that Josh has OCD tendancies based on the obsessive behaviors. But hge is not a nasty kid, he is not violent nor does he act out. But I up intial interview with the new doctor PDD was tossed out there.
If someone can tell me more about it please.
Thanks Rina

Hi
PDD-NOS is basically the left overs category unfortunately. It is for kids who have some of the symptoms of autism but don't neatly fit into one of the more specific diagnosis like Aspergers or Autism. There is a HUGELY wide range of kids with PDD. You can have a child with significant delays, some social skills issues and repetitive behaviors but not the full criteria of social differences that a child with autism will have and it will be PDD-NOS. On the other hand, you can have a child who is very bright and highfunctioning with social skills and sensory issues that are enough to be concerning but doesn't meet the full criteria of Aspergers and they will be PDD-NOS. You can have a kid who pretty much meets the criteria for AS but had a language delay early on and it is PDD-NOS.
There is such a wide range of kids with autism spectrum disorders and no 2 really are the same though they all have the same core deficits. I wouldn't compare him to that one other child with AS because of this. I have 2 kids with AS and they are VASTLY different from each other. In fact my 2nd child wasn't diagnosed until 7 (he could have easily been at 3) because he was so different from his sister we insisted he didn't have ASD.
It definitely sounds like you son at least has a ton of sensory integration issues. Though you don't have to have autism to have sensory integration disorder most autistics do have it or at least a bunch of sensory issues. Those would be everything like not realizing his face is messy, to not liking being touched and often it can be the cause of poor motor skills. On top of that he has some concerning language issues so it would be good to have him evaluated.
All autism spectrum disorders have 3 main areas of deficit (darn didn't i just type this in another thread recently?) Language, social skills and imaginative play. That doesn't mean that they don't have those skills at all, but it does mean that it is delayed in comparison to peers or significantly different. For instance, I know a large number of Aspie boys who have tons of imaginative play, but instead of cooperative imaginative play, they become some character usually from an obsessive interest and if they play with others they insist the others do what they tell them to do.
Another way of looking at it is CBS, communication, behavior and social skills. The communication of an ASD person is qualitatively different. Even with those who have lots of language and vocubulary. You mentioned something similar to this in your post. Behavior - Some have behavior outbursts, some have meltdowns, some withdraw, some have repetitive behaviors, etc. Looking at behavior as more than just "naughty" there is definite behavioral differences with ASD kids and 3) Social skills - this is the key typically. It is the thing everyone talks about first when talking about AS. At it's core it is a social communication disorder. They just really have a hard time socially with peers, etc.
HTH
Renee
Hi Rina,
Well, the first thing that must be said which we say over and over is: No 2 kids with PDD are anything alike! If you know a child who is Asperger's and your child is nothing like that, well, that means not one thing, because you simply can't compare them. Your child could be spectrum by what you describe, and also might not be. Certainly he shares lots of traits with my son, who is 8 going on 9 years old and officially dx'ed PDD-NOS, which means he has some PDD traits and doesn't have others, but enough PDD traits to cause trouble and take seriously.
Let's see - Similarities: slow to learn to talk from 2 - 5, yup, but our ds caught up quickly, now has LOTS of words, conversations.
repeating topic ad nauseum - my son used to do that all the time but has mostly moved past that now.
social skills - our ds has had to be taught carefully since age 3, had he not been taught, I believe he would have been socially completely lost. New kids are harder for him, large groups of kids very difficult.
focusing on tasks, again challenging for him, again he is being taught. Not naturally good at this, but learning.
Skittish and afraid -- yup, our ds really tends towards this if he is not comfortable!
A very thorough evaluation by a good neuropsychologist who specializes in children with ASD has been our god-send. We spent a lot of money a few years ago and that many-paged report has been so useful in helping us with decisions about our ds' education, socialization, where his strengths and weaknesses are, why he has trouble in certain situations, etc. The actual dx hasn't meant nearly as much to us or anyone our ds works with, except the ASD specialists, of course. And that report has been instrumental in helping us to provide the assistance which has resulted in the large amount of progress our child has made and continues to make!
My son is also not violent, some are, but I do feel that acting out is always stress and confusion related. Lowering anxiety and building comprehension is our big key. Allowing our son to step out independently but always with as thorough an understanding of requirements, etc, as is possible and always with a backup plan/exit strategy, etc. I have found by truly understanding where he is coming from, we don't waste time expecting what he cannot do and instead focus on building from what he CAN do. Works for us.
Anyways, welcome to the board. Whether or not your son is on the spectrum, this is a great place for advice and support. Do stay in touch as you move forward, let us know what you find out and if we can help with anything more.
yours,
Sara
ilovemalcolm
Thank you all. I realize I type too fast for my thoughts and don't always edit well. So thank you for you patience for reading our story.
As i sit here watching and listening to my 3 kids playing/arguing over checkers. My husband and I have always joked about Josh being at least 6 months behind the 8 ball andI thinki the gap has changed to a year. We are lucky in the the kids in the neighborhood are usually pretty good with Josh and most adults see Josh as a good kid who can be insightful. But I see as my other 2 getting older and seeing what my oldest was not doing at the same ages. I realize how much at times I did fail him. But at the ages my other 2 are at 4 and almost 7, I know most of what i was working on were the physical aspects of Josh. And I and all blamed the physical on the mental. I still feel somewhere along the lineJosh was affected by either General Antsheia(sp) or he had something else happen.
We have been trying to limit the TV and video games. Right now we are on a screen time sabbatical..lol. i suggested to Josh to take to a girl in his class whose mom I know to ask her to be sort of his class buddy to help him remember to lean out his locer and to bring home the approptiate stuff. I also when I find an incomplete home work assignment or a failed test. I make JOsh rewrite the assignment and put in the correct answers so i know he knows the material. Then he will turn the work back into the teacher so she knows I am aware. We are also planning for Josh's teahcers to make them realize that although the calendar says Josh is 11, he is not 11 where it counts and not to expect him to able to do what other 11 year olds are like. And hopefully i plan to get him reclassied as more SpEd than he is right now and try for next year to get him into and intergarted class. I have been trying since 3rd grade but they never conmsidered him SpEd enough nor regular student enough does that make sense.
I don't know if I have Josh in to much afterschool activties. I have him in Hebrew school 2 evbenings a week in prep for his Bar Miztvah and he is actualy doing okay reading Hebrew and understanding it(better than me). He just moved up to Boy Scouts so that is once a week(social skills) and he bowls once a week on Sunday (fine motor skills/social skills) I don't want to pul him out of anything because my mother did to me for bad grades trust me it doesn't motivate. I have been working on thinsg but I need the guidance. Is it too late. Most of your guys seem younger. I have no problm with Josh being the quirky bus driver but in NY everybody needs to take regents tests now and there is no such thing as a general track any more so I get worried over the pressure put on him.
THanks Rina