PDD-NOS....but makes great eye contact and is socially aware??

Jill - posted on 04/19/2009 ( 33 moms have responded )

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Does anyone else have this problem? My son is 3 and was initially diagnosed with PDD at 18 mos. because he was showing some signs...spinning, repeating, sensory issues, developmental delays,terrible tantrums etc. He has recieved a lot of early intervention and it has helped a lot. But his teachers do not feel he is typical PDD because he is aware of his surroundings...they feel he has a lot of behavior issues...how am I ever supposed to know the difference? Its almost like I want the diagnosis just to explain why he does certain things...He is really difficult sometimes, and then there are times he is just wonderful...:) Thanks for listening...

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Jill - posted on 04/20/2009

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My 7-year old son has been "diagnosed" with PDD-NOS and I totally understand what you are feeling when you say you almost want the diagnosis so that you can explain his behaviors. I felt the same way about my son, especially when he was about to start school. He is very social although he has difficulties with "zoning out", jumping up and down, throwing himself on the couch repetitively and repeating himself over and over.



I couldn't get a diagnosis from a specialist or my pediatrician, so I finally got in contact with the county school system. They performed a series of tests and came up with the autism diagnosis. I was relieved because I knew that he would not just be "stuck" into a class where he couldn't keep up. My son is so borderline that the specialist STILL won't give us the autism diagnosis, but did say my son was probably in the category of PDD-NOS.



The thing is, we mom's know the truth in our gut. We know when something's not right with our kids and we are the only advocates they have. They are counting on us to do the very best we can for them, to protect them and see that they are given an environment that they can thrive in. Which is very hard given the little amount of knowledge offered from the medical standpoint. I feel like they're shrugging their shoulders and saying to us, "I don't know". And the truth is, they don't! Which makes it even harder.



I would check out the resources in your area that are available to your child and your family. There are lots of moms that are dealing with the same things you are dealing with and you could find a support group that can help you get the answers you need. That's what I'm in the process of seeking out myself right now. Hope that's helpful!

[deleted account]

erm.. my understanding of aspies are that they ARE socially aware - they WANT friends and social contact - they just have varying abilities to know and understand HOW to go about social interaction in an appropriate way. My 5yo Aspie typically has a group of 2-3 close peers and appears well liked by most of his class, despite his frequent transgressions of the social rules (particularly those around personal space).

My 6yo PDD son came up as 'exceptionally gifted' in the part of the IQ test that test for ability to understand social conventions. When I asked how this could be if the label of PDD or ASD was correct, she said "just because he can UNDERSTAND it in a clinical test setting doesn't mean he can APPLY that knowledge to real life fast paced social interaction with a million other sensory inputs to process at the same time". Made sense to me :-)

But frankly, they're all just labels. The purpose of the label is to give some direction and guidance on what therapies and treatments, class strategies, etc are likely to be of some help. They also serve to get us access to funding and resources. They rarely tell us a great deal about our special little individuals.

Maria - posted on 04/19/2009

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You just described my daughter! She stims, has meltdowns, developmental delays, and sensory issues. At times she is "in her own world" (words of the teacher) but then she "makes great eye contact" and "wants to interact with children". And all of those statements are true! We just don't know what to think. But, I am going to see this as a positive. I think it means we can really work with these kiddos and get them to make great strides in their socialization.

I just read a book called "The Ten Things Your Child with Autism Wishes You Knew" It really kind of helped me see things from her point of view. Every meltdown is caused by something in their surroundings it is just up to us to be detectives find out what is causing it and how to help them through it. (sure, piece of cake...ha ha)



Mary has meltdowns when she doesn't get what she wants (like every child) but the difference is, she doesn't understand what you are trying to tell her most of the time. Perfect example, I took my PDD daughter and her little sister who is neurotypical to go to Chuck E. Cheese. Unfortunately, it was packed and I knew waiting in a line was not going to work, too much sensory overload. So, I decided to go to another place, exactly the same, for them to play. I told them this, I said we are going to go to a different Chuck E. Cheese. My four year old got it, my five year old, nope. She screamed and cried all the way, with my four year old telling her it's okay we are just going to a different one. As soon as she saw that we were indeed at a similar place, she was fine. You can reason to a certain extent, with other children, or negotiate, but not with these kiddos, at least not very easily. So, yeah it is "behavioral" it is a behavior all right, but we have to change the way we deal with it, because they aren't spoiled brats they do not understand how things work in "our" world. So, we have to get into theirs somehow, and be understanding of them when for whatever reason, we just can't break through.

Sara - posted on 04/20/2009

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We are going through the same thing my son will is 41/2 and was diagnosed with pdd and apraxia. He make great eye contact and is well aware of his surrounding as well( other times he is in his own world).That is the unknow of the spectrum, there are so many variations of the disorder I don't think we will ever know.Like your little guy, my son had great days and most days we struggle. I am also struggling with the behavioral problem as well. You are not the only mom or parent who want to know. Hang in there, lots of love and patience. Sara

Cristina - posted on 05/26/2011

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Oh, I have been here... With the teacher's opinions...and my own frustrations.... Ultimately, I have found that what my son needs is for me to be on his side!!! To know that he isn't a bad kid with behavioral issues... But a great child with a handicap that isn't obvious!! So I educate those around and make sure that the people on his "team" see him the same way.... If they do not... Then they are not welcome.... His team needs (I cannot stress this enough!!) people who know what pdd-nos looks like... And your son sounds like mine...people who view him as a behavioral issues are ignorant and will bring you frustration and more hurt for your son!!! Best wishes... Your son is worth you fighting for... And believing that he is a good kid with some obstacles that need to be addressed!!!

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33 Comments

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Maria - posted on 07/29/2011

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Has anyone with a child with PDD seen a DAN doctor? I am trying to locate a DAN doctor in New york and would love to know if anyone can recommend one.

Amanda - posted on 05/27/2011

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My 23 month old was just dx with PDD NOS and development delays. One of her therapist and most of my family do not beleive she has it because she makes eye contact, is loving to family and is social. But there are times when she is in her own world she is very self directed she stems some and has sensory issues.Behavior issue are big.If she doent get her way she has a tantrum because she doesn't understand what you are trying to tell her. When she is frustated she hits or throws things. I get many conflicting advice from different people on what she has or does not have. I realy don't know what to think anymore.

Amanda - posted on 05/25/2011

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My 23 month old was just dx with PDD-NOS. I get the same thing from people. Kylee is social with some people then other times she could care less. She stems,has sensory issues, physical issues and some other issues. I feel like I am standing in a circle and everybody is yelling things at me about how I am wrong or its not this it is that.I have no clue wich way to turn.

Linda - posted on 08/08/2010

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my 6yr old son diagnosed last year with PDD_NOS/Aspergers by his Neurologist. He also started with a lot of early intervention. He is a very social boy and does make better eye contact now. There is a multitude of variances with Autism not every child is the same and can not be given text booked diagnosis. I say go with what your heart tells you and find professionals who have a lot of experience. Teachers are not always well informed or diverse in Autistic areas.

Brenda - posted on 08/08/2010

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Hi Jill :)
There is nothing typical about our kids, they can have one or two symptoms or multiple of symptom, severe or not. What is important is you recognize your son is not acting normal in all aspects. Make sure you follow up with your ped and get referal for speech, ot etc.
Only we as parents really know what is going on.
My son (13yr) displayed many of what yours is going thru. He even made eye contact most of the time and some of his issues have intensified and some have receeded, so its whatever your sons body is going to do you just have to roll with it.
Take care ;)

[deleted account]

A wonderful book that might help to understand some of the "behavior" issues is "Seeing Through New Eyes" by Dr. Melvin Kaplan - you can order this through Amazon.com. Also, www.sensorylearning.com is a great site to research. I work as a vision therapist and many of our children that come to us have hypersensitive hearing, or they are left ear dominant - both of which can explain a lot of the meltdowns, and they also have major visual issues which are not picked up on a routine eye exam. I truly believe the behaviors are not "problems" we should "fix", but they actually give us insight into what the solution is. Check out these two resources - I think you will understand what I mean! :)
Angie

Vickki - posted on 08/06/2010

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My daughter was diagnosed at 4 with severe classic autism, she is now 12 and has been totally aware of her surroundings since she was 5/6, and tries hard 2 communicate with people and other children, she has no speech but tries 2 gain eye contact and engage in ball games. My son with mod high functioning autism has always been aware and has a few friends in school.

Jane - posted on 08/06/2010

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The diagnosis is likely right on. These are the kids who look "normal" but aren't. Teachers like to blame behavior, because EBD departments have been emptying since ASD began being diagnosed. It's interesting, isn't it, that they can see that he's not behaving typically in these social situations, but can't see the PDD?

If he were truly NT but with Emotional/Behavioral Disorders, then he would know exactly what he's doing, but he doesn't. Does he act surprised when someone cries when he hits them? Does he seem to do things experimentally, like he doesn't "get" the cause and effect, or "get" that he's affecting them? See, that's PDD.

Amanda - posted on 08/05/2010

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My daughter will be 3 in November and she was diagnosed with PDD/NOS back in April. She is aware of her surroundings, she is very social but she has sensory issues, she has a high pain tolorance, she is violent, she has temper tantrums, she has a speech problem as she never did in the past. She is overly intelligant when it comes to computers, television, remembering movies and what not, but she can not chose between milk or juice. So the only thing you can do is what i was told to do, take them in and get a second opinion. That will ease your mind and might help you to know the difference better.

Cristina - posted on 04/25/2009

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i have to say that as a mom, trying to figure out what is pdd and what is typical is like juggling knives and balls at once...doesn't work so good... my son also makes eye contact, loves hugs and kisses... is empathetic, says sorry, etc.... he has an immensely high level of control (i bet through his eyes it is alot more coatic, with all his sensory issues)...the world has to work his way or else... i mostly try to stay consistant, because the real world doesn't work the way we make it... but asking the "wh" questions is a hurdle... it took me a while to realize his speech is off memory and not understanding... phrase the question right, and get a response...change the wording and get your question simply repeated back to you....then there's the ever evasive "how are you?" which i pray at some point may be understood... he looks typical, usually behaves typical... but as it is with high functioning kids on the spectrum, it gets alot more grey... and unless you have a child that is high functioning... it just looks like a typical kid who's throwing a fit, with a parent who's just doing a bad job... hang in there.. yes, it looks different for all of them, and really a parent... i describe it as feeling like i'm a detective trying to figure out this puzzle, with most of the major pieces missing.... when i'm trying to understand my son's behaviours on bad days...

[deleted account]

I know how you feel, my daughter is 7 and in kindergarten because I had her repeat pre-K since she has a speech disorder. Her teacher was amazed because she learned to read well before she learned her ABC's just before her 7th b-day!!! Her speech therapist has always recognized the very slight autism symptoms, but I am frustrated with her teachers because they just can't imagine such an interactive child having this disorder. I have two older boys and to get their attention all I had to do was threaten to take away a privilege, but that doesn't work with her because she can't relate her behavior at the moment having an effect on a later event and it ends up in an even bigger fit with her screaming NO please NO!!! Instead of the desired reaction of calming down or obeying at that moment. She also gets her feelings hurt so easily and the kids at school are so mean to her that they make fun of how she talks and because she doesn't always understand things normally they have to be explained over again they call her stupid! She is such a sweet little girl that I can't stand to see this happen to her. Thanks for being here...Jacks

[deleted account]

I'm in the same boat! My son will be four in July. I belong to a wonderful group of moms and dads who all have ASD children. I can assure you, it truely is a spectrum disorder. Alot of behavior problems exist for our kids because of lack of speech, social awareness, etc. He can be a very high functioning PDD and still have behaviors linked to the diagnosis. Do you have him in therapies designed to address the behaviors?

Jill - posted on 04/24/2009

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Yes, as several moms have said, it is SO hard to know how to handle these issues because you can't tell if you're dealing with a true behavior problem or the "disorder". That has been the biggest challenge of all for our family. And it's even more complicated when there is a younger sibling that doesn't understand why he's being punished for things and the older one isn't. So, we are working toward a balance that works for US.



What has been helpful lately is that we try to get our son to tell us what he is feeling when he's in that "zone" (meltdown, "zoned out", jumping up and down repeatedly) so that we can understand a bit better what is going on inside him when these things happen. We have found that when he is jumping (almost uncontrollably) we ask him, "what are you feeling right now? why are you jumping?" and he has been responding, "I'm excited about _______". And, at times when he is in "meltdown" mode (angry, crying), we just really try to find out what it is that he's feeling or what's going through his head. And, like Michelle said, it's sometimes just holding him tightly and letting him release the emotions in a safe place. It's almost as if we're having to "reach through" this disorder to find our son! Another lady we have talked to says that she has found a chart that has faces on it that shows all different emotions and she has her son point to the one he is feeling at that moment. She says it helps her to understand how to react to the behavior he is displaying at that moment and how to teach and help him in the future.



Hopefully this has been helpful. Do what works for YOUR family, follow your instincts. And don't give up!

[deleted account]

My DS is almost 5 and was just recently diagnosed with PDD-NOS. He makes eye contact as well and can play with other kids just fine... unless he needs some space. His behavior is improving as his vocabulary improves. He is such an awesome little boy but definitely has many moments that are super hard to deal with.

Jill - posted on 04/23/2009

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Quoting Tiffany:

. i started to feel the same way about almost wanting a diagnosis to explain the behaviors and the "different" things that he does. the hardest part for me right now is trying to decide what behaviors are the pdd or him misbehaving.



That is such a huge issue for me too!!! How to deal with these behaviors, he is so difficult! It seems that the motto in my house is "its Philip's way...or no way" because he really is a challenge...I fear for the future when he is bigger and stronger...how I will be able to control him.

Amanda - posted on 04/21/2009

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the sad but true fact is that even the 'specialists' don't have the answers!! my sons were also diagnosed pdd-nos years ago, however they love to learn and make eye contact and hug myself and their father all the time! as he gets older the diagnoses may or may not be more evident. and its a huge spectrum..many autistic kids grow up to become writers or computer specialists while others are institutionalized...but judging by what you said about your son, seems like he's on his way to a great future!! and he's adorable too!! i wouldn't worry about the labels as long as he's making progress and getting the help he needs :)

Samantha - posted on 04/21/2009

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Hey. I love the some of the feedback (especially Maria) and just wanted to add mine as each child is unique in what to do. My oldest (14yrs old) boy of 4 children has officially has High Functioning Autism, Tourettes, OCD, ADD and Disgraphia though we genrally just say he has Aspergers as a broad in communication (it is more adult friendly.lol).

For me the labels where the key to my understanding of his perspective. This really helped me break all the typical parenting rules as they just dont work and now i get why. My son had meltdowns from 7mths (a mum knows when it is more than extreme fustration) and it took years of specialists etc to "get labels". When a good friend had a similiar child but without the violent meltdowns but also with dispraxia got her child diagnosed Aspergers, we knew which direction to aim for with my son.

My son has great eye contact and co-ordination. So because he was NOT aloof, flighty, clumsy, they kept missing it. Except for a tick (mainly when he would eat he would click his jaw but then did it all the time but not noticeable) he is totally functioning appear "normal/typical" and is aware but seems a bit quirky (in general interests-buzz lightyear, star wars, age of empires) but in meltdown it is a different child.

As an active hands on mum his primary school could really understand that he wasn't and could not be treated "typical" though it was really hard logically for them because of how lovely he could be.

As a teen, I look back at the tough journey he has had and know it will be very hard over the next few years but a different kind of hard as now we have the information, understanding and strategies he'll get through.

My understanding in general is that these kids have the best chance as they have the ability learn to memorise what they need to do to "fit in". Our focus is his anxiety which in seconds can blow out to meltdown, even now. As he gets older he understands what he can and cant handle and what he needs to do to reduce his anxiety or potential for anxiety. So while he likes the idea of learning french, he doesn't because for him it is too much.



I pray that you would know what a great mother you are and that this is not the result of your parenting but that you are making a difference and if you weren't doing as much as you are, it could be worse and there might be no times of wonderful. Keep going, don't give up... Bless you

[deleted account]

hello jill,

my son malachy is 5 and a half and has just now been diagnosed with pdd/nos in hte last month. i started to feel the same way about almost wanting a diagnosis to explain the behaviors and the "different" things that he does. the hardest part for me right now is trying to decide what behaviors are the pdd or him misbehaving. its has been a very tough battle and some of my frineds and family look at him as such a bad kid and dont give him any sort of a break. there are just some things he can not controll.

i have been fortunate that his teacher has backed me 100% on all of this and i have to tell you my son is socially fine. he can interact with children and any adult one on one. he is aware of wahts around him and can have a conversation with you. and there are days where he can be wonderful in fact the first 3 years of his life we had no problems at all in the behavior department. but he has always spun (himslef and toys) repeates everything many many times, has tantrums, hates loud noices and lights. and will shut down completely in large crowds. he also since birth has had some movement with his hands. he twists his hands or moves them very fast in a chopping motion. so if you think he has pdd than go with your guy intstinct is what im trying to say. i was fortunate to be backed by his teacher in fact she is the one who brought it up to me. but i had to battle with doctors and family and friends. so keep fighting!

Nicola - posted on 04/21/2009

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my son is now 14yrs old and i am still fighting 2 get him support in school and at home. my son has elements of ASD, ADHD and DYSPRAXIA and he wasnt diagnosed until june 2008 after years of assessments and therapy. i have had nothing but problems with school and my son has been constantly bullied by teachers, who lack the knowledge and experience to help and support him. i have applied for that many statements for SEN that i could decorate the house in them, and still cant get 1 due to lack of information to support a statement. i am now seeking legal advice and hope this will help change things not only for my son but for all those kids out there whos parents lose hope and give up exhausted. wot makes it even worse is i work for childrens services and i cant even get the help and i know what help i should be getting, so i dread to think what other families are experiencing.. it has driven me to near breaking point many times hun and believe me there are lots of others suffering the same. i will not give up ever, and i will support others to continue to fight for their rights.. if i can help in anyway please just ask.. i cant promise it will help but im willing to try. GOOD LUCK!

Jill - posted on 04/21/2009

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To all who have responded to me......I cannot tell you how much better I feel about my sons situation, after finally talking to people who relate to me and know exactly what I am going through. I have been leery about joining any type of PDD/Autism groups, because I wasn't sure if I had the right dx for my son. I was so focused on thinking if he truly had PDD he didn't have all the "typical" signs. But know after reading all these posts, he is so much like what you all are describing. I am constantly on the computer trying to find reasons for my sons behaviors...and I think I have found something really great here. Thank you all again!! If anyone wants to talk to me at any time, feel free to request me!

Michele - posted on 04/20/2009

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The Chucky Cheese example describes these kiddos soooo well. It is as if once something is triggered, they can't get passed it.

Michele - posted on 04/20/2009

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Sounds exactly like my son. The diagnosis PDD NOS encompasses exactly what you are describing. PDD NOS is a vague diagnosis for children that have some of the symptoms of Autism but not all. If it makes you feel better, my son is functioning very well in kindergarten and his meltdowns are few and far between. His therapist says that I can expect him to grow up and be a normal person. He is very quirky though. Cole is bright, already reading on a late first grade level, and funny, loving, and very interactive. Until now, I had a lot of anxiety about going out and having to deal with him. I found that when he is in an emotional meltdown, I ask him if he wants a hug and I hold him really tightly. This gives him the deep muscle pressure that calms him down quickly. You are lucky you have a diagnosis so early. I took Cole at 2 to be evaluated but they told me that I needed to get him behavioral counseling. He was 3 and a half before I got a diagnosis and could get him the help he needs. Occupational therapy was a godsend! It will get better as he gets older. DON'T let people tell you it is behavior issues. These children have sensory triggers that they can't control. Get him some Occupational therapy. Good luck :)

Jenny - posted on 04/20/2009

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That is almost the exact same situation with my son, Cole. He was in Early Intervention from 20 months until 3, then integrated into an Early Childhood Classroom at 3. We have been to specialist all over, and, have been told APD, SPD, PDD-NOS, ...mainly just settling he's somewhere on the Spectrum. It's hard because we see both sides, he has meltdowns & can be a bit aggressive at times, but he's also VERY empathetic of peers and adults, apologizes, makes great eye contact - and overall is just a joy. I thought I was the only Mom with the diagnosis that you just always question?!

Trish - posted on 04/20/2009

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My son is 7 and on has ASD. His doctors were very slow to diagnose him, however, I thought it was more important to treat each symptom i.e. speech delay, motor skills, than to seek out a diagnosis. A diagnosis of autism can sometimes limit an insurance company to pay for services as well. As for your child's 'behavior issues' they could be caused from sensory issues. Here is a great article that our Resource Center Coordinator at Pathfinders for Autism wrote which can help explain how a child with autism/aspergers feels and maybe give us some understanding as to why they behave the way they do: http://pathfindersforautism.org/newsItem...

Sherean - posted on 04/20/2009

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i have the same problem alot of people look at me like im crazy my daughter has meltdowns behavioural problems the whole sensory thing,she will also spin. she now has to be taught how to react to certain stimuli. she hates crowds and loud noises but they are every where you look.the only thing is that it has taken three years to get help for her. when i got sick caring her they didnt warn me of the side affects of the drugs you take, but i realised there was something wrong when she was born.it is now one big complication after another but this is what is sent to test everyone i think

Jill - posted on 04/20/2009

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Thank you so much everyone for your thoughts, ideas, comments...I am glad I found this forum to talk to other moms who know what I am going through!!

Christine Weinandt - posted on 04/19/2009

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well as i understand it... pdd refers to a group of disorders, my son has aspergers (hes 18 next week) and every single aspbergers child is unique to themselves, and he makes eye contact etc high iq etc, its possible to have changing diagnosis over the years as they get older and you are able to more acurately diagnose, 18 mos is pretty young,,,, you dont really know how they will be socially etc ... for example one of my sons best friends ( all seem to have aspbergers or autisim or soemthing) was diagnosed as a very young child with autism.. but recently it was changed to a problem with exective funtion (autism kids have a prob with this) im not totally sure of the name... but this child is more outgoing than mine lol i always thought it was funny he has autism yet talks to ppl way more than my son... i suggest you just keep an open mind... and dont rule everything out... Dx are just lables...your child is unique... the lables allow you to seek out help in understanding him.... sorry for such a long post... i had ADD too... as well as all of my children lol so it really doesnt matter if hehas pdd or not.... what matters is you continue to evolve your ways to help him learn and grow... look into all possiblities things from diff areas may help you... and some things that work for everyone else may not help you at all....... if i can ever give you any sugguestions for issues you are dealing with feel free to ask me... not only does my son have ADD ODD OCD aspberers,, both girls have ADD, and learning issues.... and one is gifted (185 iq) with the worst dyslexia i ever saw.. I also worked in grouphomes and respite before kids and.... then i had a special needs daycare for ..i dont know i think a decade lol....strongly concidering opening one again ... i miss having little ones around



Christine



btw..... in my exp aspbergers odd ocd add etc... they are not horrible...you just need to learn how to deal with them and the child needs to learn how to make them work for themselves. .... its alot of work for the schools though lol ..... i used to say when myson was a infant and toddler.. infact even when he was a young child.. thank god hes mine anyone else would beat him..... i still think that today lol



you are the one person in your sons life (and his dad) who knows and understand your child best.... just love him and hug him... if he lets ya hehe.... and take the stress and struggles with a grain of sand... i also always said... often the kids that cause you the most stress and grief give back the most... but often you cant see easily

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