Diagnosed Pervasive Developmental Disorder (PDD)-not otherwise specified.. is it really ADHD/ODD

[WhyMyAlex]

Hello all,

I'm new here. So obviously that means I'm stressed out, feeling helpless, and really confused what is going on with my child. I figured at least a few of the codes out so here goes.

difficult child is a super smart just turned 6yo. He was the most alert baby I had ever seen (he was actually looking around the room intently within an hour of birth. From the beginning he was clearly demanding but also could be very charming and cute as a bug. His growth was always off the charts and his development was way ahead. As his speech developed it was obvious he was a sponge who could remember almost anything and loved to learn. But the more he talked the more it was clear his social skills were nil. Eye contact seemed physically painful at times, self-injury, high pain tolerance, zero interest in participating with others, a dashing smile that would come out of nowhere, and so much energy he could bring an adult to tears in under 30 mins (so people always gush how wonderful he is until they have to be near him for more than a few minutes). He always talked at people and never with. At 4.5 yo he was finally diagnosed Pervasive Developmental Disorder (PDD)-not otherwise specified. After over a year and a half of social skills class, speech, countless visits with the pedi, neurologist, psychologist, IEP with-aide in school, and medications started last summer we seem to be not much better than we were when he was first diagnosed.

The pedi tried a test of Zoloft in the summer and fall and it did not help at all. Then finally he said we should try medications to treat ADHD in January. DS responded really well and his behavior was so much better. We have been trying to tweak things a bit to find the right medication and right dosage but the pedi is not willing to go further (as in no non-ADHD medications). We now have to move onto a psychiatrist. DS seems to cycle. He will have a couple of good weeks and then he acts like a 15 yo girl with-severe PMS. This last week was terrible and almost as bad as before he started medications. He got mad at his teacher because she reminded him to keep his hands off the walls while walking in the hallway and decided that he would intentionally misbehave to "get the scared out". He also seemed to decide that since he was being a pill at school and losing his star he may as well butt heads with everyone in the family and his social skills teachers. I'm at my wits end.

Does anyone have a child that was diagnosed on the spectrum and then had the diagnosis changed to ADHD/ODD or had it added to the diagnosis? Up to this point my husband has been very resistant to the diagnosis. He admits DS has issues but did not feel AS or Asperger's was correct. But this weekend I was looking up ODD and husband agreed that our son fits almost every single trait. And the ODD traits along with unending energy and ability to deliver them is what is bringing our family to it's knees.

I'm not even exactly sure how to go into his appointment and say he was diagnosed Pervasive Developmental Disorder (PDD) but I think it is either wrong or the least of his problems. Any advice, info, or strong drink recipes are greatly appreciated.

 

[smallworld]

Actually, I think you may be looking at it backwards. Pervasive Developmental Disorder (PDD)-not otherwise specified is the umbrella diagnosis with all the other behaviors fitting under it -- inattention, hyperactivity, defiance, frustration intolerance, social skills deficits, lack of eye contact, etc. Sometimes medications work to help with the behaviors, and sometimes they don't. Kids with Pervasive Developmental Disorder (PDD)-not otherwise specified almost always respond to intensive interventions.

What kind of school setting is he in? Does he have an IEP?

 

[agee]

Your son sounds really similar to my son, except my son doesn't present as particularly bright. Or charming. Or good at learning.
Sorry. I'm a little down right now.
Anyhoo, the diagnosis. of Pervasive Developmental Disorder (PDD) (we don't have the not otherwise specified on the end) was kind of a relief to us. He used to be diagnosis. ADHD/ODD, but the Pervasive Developmental Disorder (PDD) meant they were recognizing the strangeness of the way he relates to us, our dogs, or the world in general.
The bummer of the diagnosis., however, is while kids with plain old ADHD seem to respond to medications, my Pervasive Developmental Disorder (PDD) kid doesn't have the same response. So we've tried every single ADHD medication known to the medical community and none are very effective. We're on our 2nd mood stabilizer/antipsychotic now, and while it has been keeping him from screaming at us during every interaction, he is still incredibly impulsive, very rude, and a difficult child in general.

Kids with Pervasive Developmental Disorder (PDD)-not otherwise specified almost always respond to intensive interventions.

What are these interventions? I will ask at the next dr's appointment, but after the neuropsychologist exam they basically said he needed a therapist as well as group-therapy for social skills. What else? We are working on an IEP in school and he gets no interventions there as of yet.
I don't mean to threadjack - I'm hoping the responses you/I get will help both of us.
A

 

[confuzzled]

nice to meet you...if i had a recipe i'd share...heck, i'd make

others will come along who have way more expertise in this area, but i just wanted to say, go with your gut.

he sound a bit Pervasive Developmental Disorder (PDD)'ish from what you say. but it also sounds like your intuition is right, that whether it is or isnt, seemingly the least of his problems right now.

we are kind of in the same boat, except we actually have professionals who disagree vehemently amongst themselves...not just husband and i. so i guess i pretty much believe whatever it is, you do need to address the "symptoms"...whether it be a medication change, a behavioral change, or whatever.

but in my humble opinion, its absolutely your right to question the diagnosis and ask for a thorough explanation as to why that diagnosis is a "right fit". i almost fell off my chair
when one professional based his "tentative" diagnosis on the fact mine was "a bit rigid"....umm, actually, she was post psychiatric hospital and on the wrong medications and a
nervous wreck at just being at a doctors office...(i've lived my difficult child for 11 years...and *i* cant say for sure--a "bit rigid" in a 10 min. appointment doesnt quite cut the diagnostic mustard with me)

stick around--great advice, great people and one of the few places you wont be judged

 

[BusynMember]

I think he still sounds on the spectrum, only with Aspergers. ODD is pretty much just "defiant child" with no real meaning and we all have kids who meet the criteria. Unfortunately, ODD doesn't stand alone. Many of us find it unhelpful and it certainly would be a disaster to treat ODD if he really is on the spectrum. Honestly, he probably is. The lack of eye contact and social cluelessness are spectrum problems. These kids also tend to be very bright, if not brilliant, but often can't perform in the world when they grow up because of their social deficits. Is he in any special services for them? He will need them and it's never too early to start!


Pervasive Developmental Disorder (PDD) is not a diagnosis at all. I'm guessing that the neuropsychologist or Psychiatrist meant Pervasive Developmental Disorder (PDD)-not otherwise specified.

 

[agee]

Pervasive Developmental Disorder (PDD) is not a diagnosis at all. I'm guessing that the neuropsychologist or Psychiatrist meant Pervasive Developmental Disorder (PDD)-not otherwise specified.

Nope. They meant Pervasive Developmental Disorder (PDD). I asked point blank. It is being used as a blanket term for my child. They are not committing to being on the spectrum, either. It is on the check-out sheet, too - a box with the diagnosis Pervasive Developmental Disorder (PDD).
I will ask again in 2 weeks...
A

 

[tictoc]

Hi WMA,
You are wise to move on to a psychiatrist. If, for whatever reason, ADHD medications are not working, it is good to be seen by a psychiatrist as you move towards other classes of medications. You son's history sounds so similar to my difficult child's...Bright eyed and energetic from birth...Charming to everyone for the first 5 minutes and then exhausting. My difficult child's official diagnosis's are Tourette Syndrome and ADHD, but he receives services through his school's Autism Inclusion Program (social skills deficits often co-occur with Tourette's Syndrome...but, more and more, I think we should just add Autism Spectrum Disorders (ASD) to our diagnosis list) and shows some signs of early onset Bipolar Disorder.

Pervasive Developmental Disorder (PDD)-not otherwise specified seems to capture much of what you have said about your son. And, ADHD medications don't work for everyone. They were a massive disaster for my difficult child, as was Zoloft. But, there are other things out there for your son. You mentioned that he has an aide and gets social skills therapy at school...Honestly, the social skills therapy has been the absolute best thing for my son. He goes twice a week during the school year and will attend a four week social skills program through the SD this summer. Occupational therapy and Adaptive PE have also helped a lot.

And, of course, finding a good medication has been crucial.

I often find myself asking "WhyMyChild?," too.
D

 

[Marguerite]

Pervasive Developmental Disorder (PDD) is often used by doctors who are basically saying, "This kid is somewhere on the spectrum; I need more information from other specialists in order to pinpoint in more detail."

For example, difficult child 3 got a provisional diagnosis of Asperger's when really, the doctor should have said Pervasive Developmental Disorder (PDD). But further examination of reports form early speech pathology assessments confirmed it as autism. We had become used to what we felt was a 'lesser' diagnosis of Asperger's, and to be told no, he's actually really autistic, was a huge shock. Especially when at the same time the doctor pointed to difficult child 1 and said, "HE has Asperger's." and that easy child 2/difficult child 2 was borderline.

Now, all three of these kids of ours were also diagnosed with ADHD or ADD (in easy child 2/difficult child 2's case). For our kids, the ADD comes afterwards, it's an added diagnosis. Since then we've been told that ADD & ADHD actually are increasingly being considered as somewhere under the Pervasive Developmental Disorder (PDD) umbrella.

We were lucky with this - the medications for ADHD work on all three kids. It's not a perfect fix, but it made enough difference for us to be able to help each child a lot more.

OK, now to interventions - I hear your radar thinking, "Oh, good! There is some service or treatment I can plug my child into and it will fix him."

Sorry, nope. That is too simple. But that doesn't mean you can't work with your child to get spectacular results. But it comes down to YOU and YOUR CHILD. And WORK. It can also be rewarding, however. Really rewarding. It IS worth the effort.

I view my kids, even the adult ones, as works in progress. The adults are still 'cooking' but almost done. In reality, we continue to develop and grow as individuals, all our lives. I remember telephoning my parents often, just to talk and sometimes to ask their advice. I didn't always take their advice, but it was part of the spectrum of information I was gathering to help me make my own choices.

Back to what you can do - read "The Explosive Child". Look at the sticky at the top of this forum, it will give you some insight.

What I had to do and what I recommend - a change in your mindset towards your child. Stop thinking of your child as being like all toher children and therefore "he should be able to do X without problem". Also any thinking like "He shouldn't still be doing that at his age" also has to get thrown out. You WILL hear people close to you saying this. Do not let it get to you. Do not suddenly get angry with your child because he cannot sit still or cannot stop fidgetting, like the other children. He can't, not at the moment, and you insisting is likely to set him up for failure. But he WILL get there, it will just take longer. I can't tell you how long.

You will need Occupational Therapist (OT) be strong and become an advocate for your child. You need to stop being the authority figure and rule-giver, but instead become the facilitator and support for your child.

If your child really does have Pervasive Developmental Disorder (PDD) in any form, this is GOOD news. I remember when I was growing up and reading about autism - I was dreading the thought of such a ghastly and enigmatic condition. No way would I ever cope. I could have coped with a child who was blind or a child who was a paraplegic but I hoped I never would have to cope with a child with autism.

And I got three! (Well, tow and a half...)

But in the intervening time, I've learned a lot more about autism and I have discovered for myself, that it is perhaps the best such disability to wish for, if you have to have one of them.

if you want some good news on autism, read up on the writing of Tony Attwood. He does a lot of work with autism and especially Asperger's. We were shown an article by him which lsited the good qualities of someone with Asperger's.
They are:
1) loyal. REALLY loyal. The most loyal friend you could ever have, would walk over burning coals for you.

2) Loving. They don't always show love in ways you might recognise, but they feel it very intensely.

3) law-abiding. I caution here though - the laws they follow most are the ones they have worked out for themselves, as what really apply. So if they hear rules being laid down officially, then see people break those rules, that child will then modify the true meaning of the rule to be, "We are told X but people do Y. So Y is also permissible as long as we don't admit to it".

4) Truthful. Again here, a proviso - these kids CAN lie and ALL kids will try to lie to get out of trouble. But Pervasive Developmental Disorder (PDD) kids are so bad at lying, they tend to get caught out. They can't invent a complex alternate truth, not as a rule. Over time and with vigilance always calling them on it, they learn that it is easier to always tell the truth.

These last two often mean that a Pervasive Developmental Disorder (PDD) kid will be far less likely to break the rules simply because you're not looking. SO the usual "I have to be the parent and watch my kids like a hawk because I just know they're waiting for the opportunity to break out and run amok" doesn't generally apply to Pervasive Developmental Disorder (PDD) kids. If you have raised them consistently and have a good relationship with them, you will find the usual horrors of teenage years to be far less an issue for you and this child. This is not always the case, but you have a much greater chance of this being so for you and your Aspie child.

We have friends in the village whose son is undiagnosed but probably Aspie. He has a lot of other issues too, notably his friendship with the gangs in the town. They have manipulated him, abused his trust and because of his Aspie loyalty, he takes it and has even got a criminal record because he took the blame for someone else's crime. Even the victim of that crime testified it wasn't him, but because this kid had been hiding the weapon for the thug, this kid got the sentence. I think a lot of the problems with this kid, though, come form his own lack of acceptance that he has any sort of a problem. So a lot of it does come down to the attitudes they are exposed to, and how they accept themselves and their abilities/disabilities.

We got our own kids on side through a number of methods. First - difficult child 3 was the one with the worst problems and we really needed to focus on him mostly. difficult child 1 was 14 when diagnosed, we did what we could and what we did for difficult child 3 tended to flow on to difficult child 1.

difficult child 3 is a computer 'nut'. Always was. He's absolutely amazing. But he was slow to talk, he needed to read first in order to really learn communication. At school he rapidly learned how to use the computers and the teacher would often use him (in Kindergarten) to trouble-shoot computer problems. In turn he would fiddle with settings until he was threatened with being banned. He learned how to bypass our own home password protection when he was 2 years old. Again, he was threatened with being banned if he did it again.

So we explained about autism in computer terms. We said to him, "When you get a text file off the printer, all formatted and paragraphed, you cannot tell if it was created on a Mac or a easy child. It can be made to look the same. But the software needed to give each type of computer the instructions on how to do this job, will be very different, for a Mac compared to a easy child. Our brains are similar - some people have Mac brains and some people have easy child brains. it is our job to find the correct software each brain needs, in order to learn best."

No value judgements, no identification as to which type of computer his brain was like. No good or bad. It just IS.

Because difficult child 3 was reading so much, we would put these things in writing for him and fold them small so he could keep them in his pocket. Any lesson he needed to learn in terms of social skills, we did the same thing. "Throwing stones can hurt people. We don't want to hurt people. So we don't throw stones. If we want to watch things falling, we blow bubbles instead."

We maintained a communication book that travelled in his bag between home and school. In it we would write anything of importance tat could help his teacher. In return she wrote of any incident (good or bad) so we always had immediate information. This often helped us identify problems faster.

We watched and got help form the relevant therapist when a problem was identified. Eachchild is different so you need to watch and think - you will need to have your wits about you.

For example - difficult child 3 would wander, and didn't seem to understand about names so he wouldn't respond when called. We could be searching for him up and down the street, only to find him hidden under the dining table.

So we put in a front fence he couldn't get out of.

Wr got him help for his language delay - speech pathology. Sometimes the advice we were given was unworkable or seemed to not make sense (such as "Don't let him read" - like, how could we stop him?) but generally we got good stuff. He had problems with hypermobile joints (watch for this one - it seems to go hand in hand with high-functioning autism, I don't know why but there is a high correlation). This meant his hands hurt when he has to use a pen for long periods. He also has problems using cutlery. He has to learn to put up with some pain but also find other ways around the problem. You can get finger splints but we've gone down the route of letting him type his answers to schoolwork. But for some years, he would be very resistant to written schoolwork and he got punished for it. Not good.

YOu watch your own child, you strengthen his strengths and use these strengths to help him with his low achievement areas. Anything requiring social skills will need active intervention BY YOU to help him learn and understand. Somme of it will need more time. For example, difficult child 3's Grade 9 English teacher clearly felt she understood autism, but to me clearly did not. She would say to me, "He's clearly very bright, his vocabulary is at university level (the "little professor" syndrome, this is often called) so he should be able to answer my questions. But questions such as, "In this text, what did Joe believe John knew?"
This is classic theory of mind stuff and at that time, difficult child 3 just couldn't manage it. He is better at it now, but we gave him a year off English and he is now completing his education at half rate (an option we have here). He should be now in Grade 11, but last year he only did half of Grade 10, the scientific half. He now has to do English and other humanities subjects. The year off has given his brain an extra year to mature. he still needs a lot of help from me (he's a correspondence student) and have his work modified so his ability to understand is considered. THis is a kid who has been doing senior high school Chemistry for some years now, whose grasp of spelling, grammar and vocabulary are amazing. But his ability to analyse a text is still not great. With help he can get there.

But you can't expect therapists to do all this. It doesn't come in a pill. Such things can help and should never be neglected, but the greatest work comes from the child himself. Next, the parents. And if all the efforts are coordinated (this includes working with the child, not against the child) then you WILL see amazing results.

Marg

 

[WhyMyAlex]

I have to start out by saying that Alex is mild on the spectrum. Looking at him or listening to him on a casual basis no one would know that he has challenges that impact school, home, and play. When I compare him to other kids I have seen on the spectrum (and even Nadia - the 12 yo AS girl who got lost in FL) it is understandable that some people may question why he has a diagnosis at all. But a snap shot never gets it.

Last year Alex started in the school's integrated preschool after I sent him through the child find process 3 (!!!) times. Even though he had a Pervasive Developmental Disorder (PDD)-not otherwise specified diagnosis they kept saying he was fine and his deficit areas would not affect school. He was accepted into the class as the NT private pay child and within 6 weeks was getting more support than all of the other children (including a little girl with Down Syndrome) and started on an IEP. Of course I was still paying full tuition. This year he is in full-day tuition based kindergarten. He started with a dedicated aide one hour a day but she now spends the entire day in class because of Alex and one other boy who requires an aide. He goes to a one on one with the school counselor 30 mins/wk, and has several smaller accommodations as agreed upon for his IEP. He also goes to a 60 min/week social skills class through a private children's therapy clinic. We chose to do the paid full day so that he would still get the same amount of non-Special Education school as a half day child plus his aide time (and to give me a bit of a break since I have 4 other children).

He had a full neurological evaluation and was deemed physically healthy. When he was first diagnosed through Children's of Seattle they said at some point a psychologist may be helpful but at this point they did not feel he was receptive to talk therapy. The pedi agreed. The neurologist suggested it was time to try it (over a year after first diagnosis) so we did. He was on Ritalin and seemed to be doing ok and she (the psychiatric) said she did not see Asperger's and really questioned Pervasive Developmental Disorder (PDD) as well. She pretty much said keep up the medications and she didn't have anything for us. He was also in one on one speech but they were not able to help with anything beyond saying the L sound because one on one he never felt a need to flex his authority since he had the therapist's full attention. He was always a perfect angel in those settings.

And that is were the problem lies. At first meeting or one on one Alex is fine. He has no preconceived notions of who a person is. Everyone is equal (equal being one level lower than him). But as time goes on and he learns how others respond to that person he almost seems to work in reverse from an authority perspective. The aide garners more compliance from him than the teacher, the teacher more than the principal, and so forth. He has so little understanding of social norms that he actually stared down the pedi and was trying to taunt him into getting angry. What normal child tries to tick off his doctor? (by the way he sees the pedi almost monthly so is very comfortable around him... more comfort means more likely to challenge). It's almost like the more other people seem to respect a person the less Alex does therefore keeping that person at the same level. Maybe I'm giving him too much credit in trying to figure that stuff out but the other adults in his life agree that that pretty much sums it up. Luckily this means babies are always safe from his wrath because even though babies get attention from others they are never seen as much more than helpless and that makes them below him by default.

I understand the concept of using the most inclusive diagnosis but having Pervasive Developmental Disorder (PDD)-not otherwise specified in his file is not helpful. The spectrum is too large and the possible traits are too numerous to know where to begin in finding answers. It's like looking at the weather report before you go on vacation and seeing rain in the forecast. Ok... fine I've got my umbrella but what they failed to tell me is that it was going to cause flooding, wind, mudslides, and lightning that can could kill you. That one term (rain or Pervasive Developmental Disorder (PDD)-not otherwise specified) doesn't begin to prepare you for what you will face.

A - What you were recommended is pretty much where we started with Alex. He has shown some improvement in understanding how both he and other people feel. But so far that understanding has not had a huge impact on how he treats others. The biggest change is that he is now able to express his own feelings to a point. He never used to get his feelings hurt. He was either mad or happy but now he actually gets sad and will cry if someone upsets him. Some people may wonder how that is improvement but it shows me that he is a least starting to become aware even though he does not yet know how to respond to situations.

 

[Marguerite]

Everyone is equal (equal being one level lower than him)

Oh, this is SOOOOO typical of Pervasive Developmental Disorder (PDD)!

difficult child 3 was mainstreamed too. He originally was labelled moderate, but these days would be considered mild. His good friend is also autistic, but even milder than difficult child 3. Friend was without a diagnosis in mainstream, still has no IEP or support. difficult child 3 is now in school by correspondence, but is in a mainstream academic program.

A lot of the time our kids get left without support, because they're so bright they're considered to not need any help. But there is a level of support needed even for the really bright kids.

As for what to expect from the label - you can't know. Even for us, with a more specific label of autism plus ADHD, we always found people being surprised. difficult child 3's Grade 1 teacher herself had twin boys, one with autism. She said, "I have a child with autism too; I understand it."
I said, "He's not what you expect."
After the first day, she said, "You're right - he IS different, isn't he?"

Whatever the label, your child is what you know. You know his gifts. You know his special interests. You know the things he still needs to learn. If he has had any psychometric testing done, look at the sub-scores and use this information to get him whatever help the low scores need, as well as extension in the high score areas.

These kids do have empathy, do feel emotion. It's just that they often don't display it in a way that other people can recognise.

Marg

 

[susiestar]

I think most of us, at one time or another, have had our difficult child diagnosis'd with ADHD and/or ODD. As one person above said, ODD is kind of useless. It is less helpful than a forecast of "rain". It tells you the child is not going to do what you want him to. It gives NO idea as to why, what is causing it, how to motivate the child, how to help/treat the child.

ADHD is often given a separate diagnosis because then insurance companies pay for services for that also. ADHD is more a symptom of the problem than it is the problem itself. I cannot remember if any of us have had our child's diagnosis go from something on the spectrum, or other disorder, and then go to "just" ADHD. It is vastly more likely for it to go the other way.

The diagnosis often changes as a child grows. Be prepared for this. It does NOT mean that the previous diagnosis was wrong. It just means that something else is being seen. As a child grows they do different things and different symptoms show up. Or old symptoms evolve into other things. So a diagnosis can change quite a lot over the child's life. The trick is to weed through all the diagnosis's to figure out which ones fit now, and how best to treat the child.

As others have said, no 2 kids on the spectrum are the same. My difficult child lies like a rug. He is vastly better now at telling the truth. But for years the ONLY way we knew he was lying was because his mouth was moving. It was awful. He has Aspergers and Obsessive Compulsive Disorder (OCD) and unipolar depression. Unlike many spectrum kids, he is quite good at lying, or was in his early-mid teens. He is also very adhd, and he obsesses on magic/D&D to near insanity (in my humble opinion).

We went the medication route because it was clear that with-o it he would have NO life. He responded immediately to stimulants for the adhd. Taming that let him pay attention to the tools we were trying to teach him to use. Wiz was very violent, esp to his little sister. It is another reason we used medications. We were able to lower the level of aggression with antipsychotics. This was crucial.

Each child needs different kinds of treatments. There is NO recipe that says "If child has Pervasive Developmental Disorder (PDD) then use XYZ. If Apergers, XZQR &L." Every medication and therapy will work differently for your child than for others. There is a HUGE amount of trial and error.

Just remember, no matter how confusing it seems, there is still a LOT of hope for our spectrum kids to grow up to be productive members of society who are reasonably happy. There are a LOT of ways to help a child iwth a spectrum disorder, regardless of what they call it.

The single most important rule to follow when raising a difficult child: Follow your instincts. Moms have instincts for a reason - to help us keep our kids safe. If a treatment, therapy, doctor, teacher, or cucumber feels "wrong" in relation to difficult child, stop it, refuse it, leave it. The doctors know their field of study. They are experts in whatever. Same for teachers, therapists, etc... They do NOT know our kids the way we do. They spend a few minutes every few weeks-months with our kids. WE spend every day with them. If your instincts say it is wrong then it is wrong. Period. If you are unsure, do some research and come back another time if you must. (These are the same instincts that let you know when difficult child is getting in trouble and how often are they wrong then??)

I would suggest a private Occupational Therapist (OT) evaluation. Most spectrum kids have sensory problems. A private occupational therapist will be able to evaluation difficult child for Sensory Integration Disorder (SID) - sensory integration disorder (the brain not appropriately handling input from the senses). School Occupational Therapist (OT)'s look at what will impact school. You NEED to know what will impact all of his life. The changes that proper help for Sensory Integration Disorder (SID) will make are amazing. the therapy is NOT invasive, no medications, just various ways to provide the right kinds of stimulation to help. The difference in my youngest child before and after treatment for Sensory Integration Disorder (SID) is astounding. Of course we are not really "done" with the treatments, but they are routine and not really like "treatment" right now. At the very least you want the Occupational Therapist (OT) to help figure out what types of sensory input difficult child needs and to teach you to do brushing therapy.

Brushing therapy involves using a very soft brush over the body in a specific pattern. It can be done over or under clothes and is often very pleasant for the child. If you do the therapy in the wrong order, or brush certain areas you can create real problems so it is important that you learn to do this from a certified Occupational Therapist (OT). It is often combined with a series of gentle joint compressions that the Occupational Therapist (OT) will also teach you. To learn more about this, read 'The Out-of-Sync Child' by Carol Kranowitz. She also has a book full of various activities to help called 'The Out-of-Sync Child Has Fun'. All of my kids and their friends have enjoyed the activities in this book, so the whole family can join in them. The types of activities a child likes can give insight to what kinds of input he needs.

Anyway, sorry I rambled. Welcome to our board!

 

[BusynMember]

OMG to the "everyone is equal!" Yes, yes, YES! They think adults are the same as children so many times they get called defiant when, in fact, to them there is no difference between adults and little kids. They have a incredible sense of "fair" too! And my son trying to lie is almost amusing.

Not all Pervasive Developmental Disorder (PDD) kids are the same. But they all share a few important traits: They have absolutely no real clue how to socialize. This doesn't show up as much in younger kids. My son was Mr. Popularity in kindergarten because he had more energy than the other kids (thus his ADHD diagnois at first). He would run. They'd run with him. He'd laugh. They'd laugh. But as he got older, friendships included giving of one's emotions and, in turn, absorbing other people's and he didn't know how to do that. Thank god for social skills class! At sixteen, he does have friends. They are the geeks (smart nerds), but they are sort of proud of it...lol. And he chooses friends who don't expect him to talk much or give much of himself because that is so hard for him. Not for him the malls, the dates, etc. In fact, we have to force him to get his driver's license...lol. He's a great kid. I have never met a kid with a bigger heart or a sweeter soul. He is different, but different doesn't mean lesser.

Many Aspies become very successful, but they do need to know how to socialize and they don't catch onto it just by being around kids. They need to be text book taught how to hold, say, a give-and-take conversation. They tend to monologue about their own special interest and bore other kids or not talk much at all and just say "yes" or "no" or "shrug." Many stand too close and get in other people's faces. Many talk too loud and annoy other kids. They don't realize they are doing it.

Marg, your post was great, and I always thought ADD and ADHD would be on the spectrum too...until I realized my daughter has ADD. One of the things everyone always comments on with her are her incredible social skills and how she knows just how to behave toward everyone. She totally understands social cues and appropriateness. So maybe some kids dxd. with ADHD could actually be called spectrum kids, but others...there is no way N. is on the spectrum. Her EQ (Emotional Intelligence) is probably in the 99%. It's not just that she has so many friends. It's that she knows how to deal with people so well. She's my first kid who is this proficient with others...lol. Well, I deserved one out of five

 

[totoro]

Marg always is able to word it so everyone is able to understand it!!! WHich is so nice. My daughter has BiPolar (BP) but also has Apsergers which is likely going to be changed to High-Functioning Autism (HFA). She also has been tested as having ADHD, she is very HYPER and unfocused. She has never been able to socialize. The problem with a lot of the diagnosis's and our kids is that the Doctors would like to put them in a neat and tidy little box but none of the symptoms are apply to every child. My daughter did make eye contact, she did not lose her speech she did not line things up... so they would never diagnosis her as on the spectrum at an early age.

Also most of her SX could be attributed to her other diagnosis's most of our kids are puzzles and they vary... it is almost impossible to sit here and say ALL kids on the spectrum do this or that. Same for kids who are BiPolar (BP) or any other diagnosis. Just like the medication issues as well. My Daughter does on a tiny bit of a stimulant. Just like Marg's kids. I believe the same one.
Another huge thing is the difference between boys and girls. They are finally starting to realize how huge the differences are.
My husband and I had to laugh in a sad way watching the girl in Florida because K would have done the same thing... except she would have also followed her Hallucinations into the woods to go explore nature.

K "seems" unlike most of the kids on the Spectrum in her classes. But when tested and when you look at the facts now that she is stable on medications it can be considered. And heck it gets her more services at this point. She is basically a BiPolar (BP) kid morphed with an Autistic kid if you will! LOL


Research and then research more. Ask the parents here they know SO much. I would be lost with out this place. but remember to follow your heart and take your time... this is a marathon.

 

[agee]

Not all Pervasive Developmental Disorder (PDD) kids are the same. But they all share a few important traits: They have absolutely no real clue how to socialize. This doesn't show up as much in younger kids. My son was Mr. Popularity in kindergarten because he had more energy than the other kids (thus his ADHD diagnois at first). He would run. They'd run with him. He'd laugh. They'd laugh. But as he got older, friendships included giving of one's emotions and, in turn, absorbing other people's and he didn't know how to do that.

Hmmm. Exactly my kid. Very interesting. Right now he's very much enjoying being class clown - he has no fear of repercussions and will do anything to get a laugh, but you're right - no conversation. He has 2 best friends at his after-school - one is autistic and one is a child who I can best describe by telling you he is getting no parenting. He's being raised by his 11 year old brother. This other child has no social skills, either, but because no one is bothering to teach him any.
All of this is pieces of the puzzle for me. I can't tell you all how amazingly helpful you are.
A

 

[BusynMember]

Happy to TRY to help...lol. We have similar situations. I adopted my son at two and he was so hard to diagnose. It was very frustrating.

 

[TerryJ2]

Welcome, WhymyAlex!

Agee, LOL!

I agree ... some people get all the luck. My son is just like yours but ... we don't get the bonus that he is particularly bright. Well, unless he wants to pick a lock.

I agree with-the others ... ADD/ODD etc go along with-Pervasive Developmental Disorder (PDD), which I would just call Asperger's and get it out in the open.

I would not use Zoloft or Prozac for two reasons. (by the way, this is just a mom's opinion.) One, is that they are antidepressants, and he probably needs antianxiety medications (the depression usually hits in the teen yrs) and two, that Zoloft or Prozac work in tandem with-estrogen, and therefore work better on women. (There is an interesting article in Scientific American Mind on that topic in the most recent issue.) For males (and male children) the author recommends medications in the family of imiprimine, which is what we use, and which really works (although it wears off at night ... wish there were time release long-term injections! LOL!)

Your description of him being on the same level with-everyone else is right on target. I feel for you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

[agee]

My difficult child takes imipramine at night for bedwetting. I'm wondering what would happen if he also took it in the day.
I agree about the Prozac - did nothing for us. Imipramine gave an almost immediate mood boost and it helps our mornings. I'm wondering if it could also help our days.
I'll bring it up next visit.

My son is just like yours but ... we don't get the bonus that he is particularly bright. Well, unless he wants to pick a lock.

Now it's my turn to LOL. My son is super smart at making people mad, destroying anything and everything, and using swear words with remarkable skill for a 7 year old.

I wonder about an antianxiety medication for my kiddo. It has never been mentioned. But I know he gets what I'd call "worked up" about school, transitions, etc. Perhaps it's actually anxiety.
Hmmm.
I have often thought that once he discovers it, marijuana may be helpful to him in many ways. I'm not advocating self medication or illegal drugs, but I do think that most of the time the boy just needs to chill out.
(Sorry for the complete and total divergence from the thread).
To the OP: I feel for you. This is very frustrating! Hang in there and hang on this board because these women know their ****.
A

 

[Marguerite]

Anti-anxiety medications and antidepressants don't work for difficult child 3. And Zoloft - it's absolutely brilliant for difficult child 1. His wife is on it too so they sometimes take each other's. Why travel with two packs, when one will do? As I said - these kids are all different, the rules don't always apply.
Marijuana is generally a really bad thing for these kids - it has other effects that can cause problems. Remember, stimulant medications often work to settle these kids down, especially settling ADHD kids (and I agree, not all ADHD kids have other Pervasive Developmental Disorder (PDD) signs). Stimulant medications usually stimulate 'normal' kids. They calm down the ADHD kids. It is a paradoxic reaction that doctors count on. So you can get similar paradoxic reactions to marijuana and the psychosis problems can be much more an issue for ADHD kids.

On the topic of socialisation - we've found they tend to find other kids like them, in some way. difficult child 1's best friend at school was a classic (undiagnosed at the time) Aspie. He would do weird things, magic tricks etc. ONe time he had a can of lighter fluid at school - poured it over his hand and lit it to see what would happen. NOT a good idea. The school never knew. But the teachers (most of them) were scared of him and the deputy had a campaign to get rid of him. She would have campaigned to get rid of difficult child 1, but he had IEP funding and this was money coming into the school. She did eventually push me too far though, and I pulled him out.

difficult child 1's Aspie friend - I remember difficult child 1 telling me one day, "He talks at me about reptiles, I obsess to him about birds, neither of us listens to the other and we get along great!"
Aspie mate was difficult child 1's best man when he married. I tell you, that was some wedding speech! Although daughter in law is not Aspie, I suspect her mother is. She HAD to be in full control of the wedding and people still talk about "that woman". Her reaction to the best man's speech was electric - she almost launched out of her chair to silence him! He (and the other groomsman, who had to help) began with, "When we were asked to give a speech, we were given a list of words we definitely should not use. Here they are..."

Now Aspie mate is getting married soon. It will be very interesting...

Raising Pervasive Developmental Disorder (PDD) kids (or even just having them around) keeps you on your toes and your mind stimulated. To a certain extent you get used to the unusual and take it in your stride. But some things are memorable - the time we bought a new front-loader washing machine, for example.
We set it up and plugged it in. I started off a load of washing. At some later stage I noticed the boys were quiet and went looking. I found them sitting on the floor in the laundry, cross-legged in front of the washing machine, heads tilting this way and that in unison as they watched the clothes through the little window.
"I don't know why but I find tis strangely compelling," difficult child 1 said, without changing his position.

They got the empty cardboard carton the washing machine had come in, and worked on it. They cut a small window in it, filled it with cushions, threaded the computer game controllers through the window and sat inside the box with the window pointed at the game screen. Or they watched TV from inside the box. I also found difficult child 1 doing his homework inside the box. They closed the top of the box so it was cramped and dark inside. But they liked it. They had controlled their environment and arranged it to their liking. I found it a very enlightening experience.

Marg

 

[TerryJ2]

Wow, Marg, that washing machine story is amazing!

It is a paradoxic reaction that doctors count on. So you can get similar paradoxic reactions to marijuana and the psychosis problems can be much more an issue for ADHD kids.

I agree.
Agee, not only that, but with-the laws being so "iffy," it's just not worth the effort. Right now, I'd stick with-mainstream medications.

 

[BusynMember]

Marg, I couldn't stop laughing (and empathizing) with the washing machine thing and your son's comment. Even the wording is Aspie Classic...lol. Lucas doesn't watch things anymore...he did when he was younger...but he is often taken with other unusual things. In some ways, they are child-like. He loves to test the gadgets in my van and play with them. When I tell him to stop, he says, "Sorry, but I couldn't help myself; this is fascinating."

When he was a toddler he was fascinated by lightswitches and would turn them on and off and on and off until we made him stop. Strange, strange, but wonderful, loving, intelligent kids who will be good, law-abiding, sweet adults one day.