Pervasive Developmental Disorder (PDD)-not otherwise specified?

Discussion in 'General Parenting' started by myfirstandlast, Jan 29, 2007.

  1. That's the closest thing I can find to what I'm dealing with, in my DS. He is 11. Did not meet enough criteria for Asperger's diagnosis but has a lot of those symptoms. Has ADHD and a very high IQ.

    Had one of those "meltdown" days today. I'm not cut out for this.

    This is the third time in as many months that I have outright told him that if he HATES it here so much, to go and live with his dad. I don't put that out there lightly. I'm at wit's end with no local support. People seem to understand what I'm going through, and say they understand, but he is never the way he is at home when he's at school or other places. At home, he is the most mean, cruel, extremely moody, extremely reactive, volatile, vindictive ... I just don't think I am meant to raise this child!

    I'm going to have to write this in bits and pieces. I keep breaking down.

    His grades have been steadily falling since 4th grade. He is in 6th now and getting some C's and D's and outright refusing to do anything remotely related to writing, that requires writing more than a couple of words on a line. Spelling and vocab are fine. He just WON'T WRITE.
  2. tiredmommy

    tiredmommy Site Moderator

    Hello and welcome. I'm sorry you had to find your way here. Our children have a way of bringing us to our knees. Has your son been evaluated and diagnosed with Pervasive Developmental Disorder (PDD)-not otherwise specified? If not, that's where I would start. Many childhood disorders have overlapping symptoms so it helps to keep an open mind. One possible disorder is NonVerbalLearningDisorder (NonVerbal Learning Disorder (NVLD)) which can look a lot like Aspergers:

    We aren't doctors here and can't diagnose, we're parents that have walked along the same path of parenting a challenging child. I would advise you to set up a multidisciplinary evaluation at a local children's or university hospital if you aren't confident is his current diagnosis. The other thing is to request an evaluation from the school, send it certified mail. Your son may need an IEP and educational supports. And lastly, pick up a copy of The Explosive Child by Ross Greene, it's been a lifesaver at helping me figure out how to parent my child.
  3. OTE

    OTE Active Member

    Welcome. Has he been evaluated for learning disabilities. If his issue is written expression there are a number of specific LDs it could be. Are the teachers using stategies for kids with disabilities in written expression?

    Are you in family therapy? Sounds like he's using you as a punching bag for every negative feeling he has. He needs to learn other ways to express his feelings appropriately, and the younger the better.

    Many of our kids' behaviors begin to deteriorate as they approach adolescence. There are some mental illnesses that can kick in at that time. Therapy is the first step to figure out what's really going on.
  4. Okay, a little more. He has no table manners. He refuses to use utensils. The few things he will eat, he eats with his hands. He is extremely picky. He will only eat certain foods, made a certain way, and not if they touched other foods. I have in the past tried to make him try new things, or even familiar things that didn't "look" or "smell" or "feel" right to him, only to have him wretch and gag. Huge display. King of drama.

    He has #1 and #2 accidents during the day and night. I don't think he wipes well if at all when he uses the bathroom. He rarely flushes. I remind him repetitively to wash hands, brush teeth, wash hands, can coax him into the shower maybe once a week.

    Little surprise he has few friends, or I should say people HE considers friends. To date he has had two of them over, and they have played with his little sister more than him (she is more socially mature) or with his older stepsister and not only ignored but excluded him. His friends had to be prompted to play with him or at least include him. God, that's painful to see.

    There's more ... I am so mentally exhausted tonight. Had a giant falling out over his study habits. He finally got an IEP after 2-1/2 years of fighting for one, and there hasn't been a lot of time to see if it will help, but I noted in his planner tonight that there were three things due tomorrow, and none of them done. Instead, when I picked him up from school, he insisted we had to get Mentos and Diet Coke for an experiment that was due today, and hasn't done any of the write-up of the results, and fell apart when I brought up the book report. It is worth about half of his grade in that class for the marking period, and it is going to be another E.

    He's been seeing a psychologist on and off. I usually see a day or two of improvement and then wham, back to "normal" ... whatever that is ...

    He's been to a series of psychologists and specialists to try and figure out what all is going on. The only consensus is that it is ADHD and "something else" but not Asperger's even though most of the teacher evaluations point that way.
  5. I have read The Explosive Child ... hard to believe he's been worse in the past than he is now (about 2 years ago) but like most things, it helped for a while, until he figured it out.

    One of the main sources of anger is his bio-dad. The man hates me and it just oozes from his son, I don't know if it is loyalty or what but the kid goes out of his way to please his dad and then when it comes down to me, I'm an evil tyrant slavedriver for expecting him to put his clean clothes on hangers.
  6. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Welcome. I'm sorry you are struggling so right now. You sound absolutely exhausted-a point where many of us were when we first stumbled on to this site. I hope you are able to find some time to take care of you even if it is just little things like taking a bubble bath or getting in some excercise.

    You are not alone-we are here for you.
  7. timer lady

    timer lady Queen of Hearts

    Welcome. I popped in to offer a cyber shoulder to lean on tonight - you sound so tired.

    We will support you through this journey - no matter where it leads.

    Be gentle with yourself. :smile:
  8. SuzyfromTexas

    SuzyfromTexas New Member

    Offering my sympathies and support as well.

    You may have already tried this but I'm finding that rewards seem to work better than punishments. For example, can he earn something of value for each night he displays good table manners? I know this is overly simplistic but I'm finding that my son is improving his behavior using a token reward system where he earns so many tokens and then cashes them in for a prize.

    Please take some time for yourself and get help/medication for yourself if needed. We are are here for you.
  9. SRL

    SRL Active Member

    Hi myfirstandlast, I'm glad you found us.

    I have a child who is almost 11 that leans in the direction of Asperger's but falls short of meeting the criteria. He was seen by a developmental pediatrician for that diagnosis but if you haven't already, the specialist to see for an 11 year old would be a neuropsychologist. Our school district has a good grasp on the spectrum nature of Autistic Spectrum Disorders so the fact that he leans in that direction was enough for them to really work with us on his issues. Otherwise it's often a tough position to be in without a diagnosis.

    Knowing exactly where he stood diagnosis-wise was critical because it pointed me in the direction of resources and parents that were helpful. Because all of his symptoms fell under that Autism Spectrum Disorders (ASD) umbrella (even though he didn't have all of them) we looked at what helped Autism Spectrum Disorders (ASD) kids and often found it worked with him. I'm all for borrowing from whatever camp of info is the closest fit!

    The second thing that has helped was having to do a mindwipe on interpreting my son's behavior because what I often found out in the end is that he had a perfectly good explanation for it but I couldn't see it from my point of view. From my point of view my son's refusal to eat most foods in a very specific way seemed stubborn, unhealthy and unreasonable. But when I learned he had a condition called Sensory Integration Dysfunction that caused taste, odors, noises and sounds to be blown way out of proportion from what most of us would experience, it all started to make sense. The narrow foods are "safe" because they don't deliver an assault to his senses. When I thought about what it would be like to go through life with the repulsive feeling I had at certain foods when I was pregnant, I started feeling more sympathetic than frustrated. Problems with showers and bathroom skills are very common for individuals with sensory issues.

    The Explosive Child has been a godsend to us because it helped me to stop making a big deal out of the stuff that didn't matter in order to give my difficult child's Automatic Authority Overreactor time to settle down. Right now when everything about this kid seems to be wrong you need to step back and really prioritize what's important. in my opinion, issues like hanging up clothes and table manners can go on the backburner until he's calmed down and the two of you are working together in a more functional manner. My difficult child doesn't cope with homework after school or in the evenings at all--he's just too shot from a day of school. It took awhile to find something that worked and finally realized that giving him the choice of him getting up early to do homework before playing Gameboy reduced conflicts by about 98%. It took into account his issues, gave him a choice, and provided an incentive--just what he wound up needing.

    I hope you'll hang around--I've learned a ton from the parents on this board and my difficult child is doing great. But it's only that way because I was willing to change my attitudes and actions so that he could change accordingly. Kids with this profile rarely will meet expectations the way a typical child will.
  10. amy4129

    amy4129 New Member

    I just wanted to let you know it is ok to post and cry, we have all done it, I know I have. Sometimes all the Mommy hurt has to come out and this is a safe place to put it, where others can help you beat all those feelings down to size that you can deal with.
  11. Marguerite

    Marguerite Active Member

    Hi, and welcome. Crikey, your son sounds like a mixture of my two boys!

    A few things that could help for now -

    1) If you haven't already (or maybe even if you have, but a while ago) - organise a thorough neuropsychologist evaluation. people on this site can help you there more than I can, it's a bit different Down Under.

    2) He sounds like he's dealing with sensory integration issues, body awareness issues, a need to control as much as he can around him (common in Pervasive Developmental Disorder (PDD) and ADHD) and really poor organisation skills. I'm also wondering - do his hands hurt if he tries to use a pen, or utensils, for any length of time? What is he like at colouring in? What is he like at using scissors? I ask this, because it can be a HUGE, and often unrecognised, issue.
    Basically, with my younger three kids the problem is hypermobile joints (like double-jointedness). This is NOT a good thing, despite what we may have thought when we were growing up. For us it's especially bad in the boys, especially difficult child 3. His hands hurt when he holds a pen or pencil, as well as when he uses a knife & fork. We had him learning piano early, because it trains the hands to pull the fingers in, like claws, for best playing position. But unless he concentrates, his fingers splay out and when he pushes his fingers onto th keys his fingertips bend backwards. As a result, to hold utensils he has to force his muscles to grip tight, and they cramp really quickly.
    It took an Occupational Therapist (OT) to confirm this diagnosis when he was about 3. And now we have an Occupational Therapist (OT) in the family - we can see it in the other two (although they were previously privately assessed and also found to be hypermobile).
    With the label of hypermobility, we were able to get the kids permission to use a computer keyboard instead of having to hand-write. it's made writing tasks much easier.
    I do wonder if hypermobility is connected to some sub-group of Pervasive Developmental Disorder (PDD), I keep coming across this connection.

    3) The eating with hands thing, coupled with poor toilet hygiene - generally these kids are fairly fastidious, when they're reminded. At least about health. If you remind him that eating with hands requires hands to be scrupulously clean, he may be more willing to wash before eating. It could even begin setting the habit in place firmly. If you remind him that especially if he's not good at cleaning himself up yet, plus he prefers to eat with his fingers, he should make a point of washing his hands after using the toilet.
    Something else I STRONGLY recommend - until he IS able to clean himself up better, get a refillable packet of wet wipes and keep them in the bathroom beside the toilet. Keep a bin in there for him to put the used wipes in (better than flushing). Get him to use the wipes AFTER using paper. The wipes are a much easier way of keeping himself clean. Failure to clean up properly will lead to sore, inflamed skin that will be really messy and painful. To treat this, use a wipe to make sure everything is spotless, then get him to anoint himself with oil of some sort - any cooking oil will do, frankly. A tiny amount will go a long way and provide a short-term barrier that will help his skin to heal. We use coconut oil or olive oil and keep a bottle handy in the loo. A small jar of coconut oil could be best for you, since it's solid except when very warm, but quickly melts on the skin. It would be less messy for him to manage. Or you.

    4) Something that worked for me with difficult child 1, was I threatened to clean him up myself if he didn't get it right. If he forgot to wash his hair, I would offer to go into the bathroom and do it for him, while he was naked in the bath. he quickly got the hang of washing his hair, because he knew I WOULD walk in on him to scrub him down if he failed to do it.

    5) His IEP should include consideration for his poor organisation skills and homework issues (this is more like my difficult child 1 (difficult child 3 is pretty good about organisation). basically, my difficult child 1 has HUGE problems holding more than one instruction in his head at a time. Things just have to be written down. He can't be judged by normal standards - he simply doesn't have the same tools. He's improved a vast amount now, mostly over the last few years. But if you try to discipline something he has poor control over, you will go backwards with him. The school should have taken this into account with his IEP.

    6) With his IEP, you SHOULD have been part of the process. I hope you were. You have to be able to contribute and explain about his needs as well as have what you want for him taken on board by the school. It's not their place to tell you what they think he needs - they have to listen to you, and also to him where possible.

    Sometimes it's really tough, especially if there is another adult in the picture who you feel is undermining your efforts.

    So, a final suggestion - ignore his birthdate. Treat him as an exceptionally bright four year old. Don't expect the same standards of behaviour and coping ability from him as others do from their children of the same age. You won't get it. Don't even try. All you CAN get, is what he can give you. And that right now is going to be way behind his chronological age. But he IS bright. He needs mental stimulation. He also needs the things that make him feel secure and calm. He also needs your help and a LOT of support with personal organisation. You can't do it all. School stuff - the school should be doing it. If he fouls up at school, it's a school problem.

    difficult child 1 was supposed to get his homework written down by the teacher (or aide) into his homework book. Or at the least, they were supposed to supervise him writing it in for himself. It was in his IEP. But then one teacher (a lot of them chose to ignore the IEP) handed out the homework on a torn off slip of paper (not even a whole sheet), without drawing attention to it by saying, "Here is your homework." Of course difficult child 1 forgot what he had in his hand and probably dropped it in the nearest bin. He was penalised for failing to turn in his homework, but I felt the teacher should have been penalised for failing to follow the IEP. What I kept getting from the school - "He's 13, he should be able to organise himself."
    All I could say was, "He can't. And the IEP makes that clear. That's all there is to it. Penalising him for not being able to organise himself is like punishing a blind kid for not taking notes down accurately from the blackboard."

    Before you can do anything, you need a formal assessment and diagnosis. This makes it possible for the school (with you as the guiding light) to put more appropriate supports in place for him.

    You're not going to be able to change much of what he says and does, at least for now. A lot of it - let it ride, for now. Work out what is vital, and only deal with that for now. Where he CAN take control of himself, encourage him. That will make it easier for him to let you help him where he still needs it. He needs to feel loved, safe, supported and relaxed. He's probably feeling none of those things, especially if you're feeling so thoroughly at the end of your rope. I'm not criticising you - you're trying to do the impossible - only pointing out that your stress will be making him worse, which is making you worse, and so on. Something is going to give if you can't find a stop to the cycle. It's not your fault - these kids are much more difficult to parent because we have to throw out the rule book and find new rules as we go.

    Good luck, keep us posted on how you're going.

    And remember, only with your back to the wall, can you go forward (weak attempt at humour).

  12. BTDT

    BTDT New Member

    Dear my first and last,

    Bless your darlng heart. I don't know your child's official diagnosis, but that sounds exactly like ODD to me.

    And with divorce it's double tough because kids with ADHD/ODD play on weaknesses between the parents and voila. So this is what you get, and it sucks big time as you well know.

    And don't be surprised if 99% of what you hear about what your ex thinks about you has been greatly exaggerated (if not completely fabricated) by your son. (Who takes great delight in your pained expression when he tells you about your ex's hot blond size-two girlfriend and their new Ferrari, right? Or how they bought him a new motorcycle or how they're so cool cause they smoke pot and drink slammers for breakfast, whatever gets your goat the most.) So breath deep.

    Here's what I want you to try the next time you hear that comment about going to live at dad's.

    Just look at him calmly listening while you gather a pen and three pieces of paper and three envelopes nodding your head yes while you say, "I hear you Son, so go ahead and write that out by hand three times, and address one to the judge, and I'll take the judge's impartial decision. Let me know when you're ready to look up ALL the addresses in the phone book." (Your son hates to write, right?) And walk outta the room. (But wait until you get around the corner to peek back 'cause you're gonna die laughing when you see the look on his face :smile:

    This is my humble opinion. The fastest way to ease your pain. (And it's horrible horrible, I remember.) Find thee a play therapist as fast as you can. Look up my other posts on this. Get the best you can find. You will never get the results you seek from the talking kind of therapy. Sorry. Talking is completely useless.

    And this will only get worse until you learn how to halt it. I could go on and on about other things that will definitely work. But first, he must stop treating you like garbage. That's why you're crying your eyes out. And that thrills him to no end. So whatever you do, don't let him see the tears. Yes, I'm sorry, he really is trying to make you miserable. That's ODD. And you must learn how to stop feeding it soon (because that's probably what you're doing and don't even know it), before he gets physical.

    And I know these things work and am sharing them with you because someone was generous enough to tell me when my heart was breaking and getting trampled like yours. I can feel the hurt oozing from your words sopped with tears, and I want to help you because I've sooooo....
    been there done that
  13. Sheila

    Sheila Moderator

    It doesn't sound ODD to me. Most of our kids could have qualified for an ODD diagnosis at one time or another, but the oppositional behaviors are often related to a different disorder.

    Pervasive Developmental Disorder (PDD)-not otherwise specified usually has some accompanying sensory issues. If you haven't read "The Out-of-Sync Child" by Kranowitz, you might want to pick up a copy. An evaluation by an Occupation Therapist certified in SIPT testing would also likely be helpful. There is treatment for Sensory Integration issues.

    And even without Pervasive Developmental Disorder (PDD), Sensory Integration Disorder is a stand-alone diagnosis although it more often than not co-exists with-something else.
  14. SRL

    SRL Active Member

    [ QUOTE ]
    And this will only get worse until you learn how to halt it. I could go on and on about other things that will definitely work. But first, he must stop treating you like garbage. That's why you're crying your eyes out. And that thrills him to no end. So whatever you do, don't let him see the tears. Yes, I'm sorry, he really is trying to make you miserable. That's ODD. And you must learn how to stop feeding it soon (because that's probably what you're doing and don't even know it), before he gets physical.

    [/ QUOTE ]

    No parent deserves to be treated like garbage but likewise every child with a disability deserves an accurate diagnosis, appropriate treatment/therapies, and parenting strategies adapted to their specific needs. Sometimes that unfortunately means we have to turn a deaf ear to what's being said until that is all well underway and the child starts responding. We went through an extremely difficult year with difficult child and believe it or not the most important step to getting him to stop abusive language and striking out physically was to ignore it coupled with rewarding short periods of good behavior. Yes, it was important that he stop the bad treatment, but that definitely was an end product and not first on the list of things to happen.

    I never saw my son as trying to make my life miserable--I saw him as a very hurting, frustrated, and confused child who had no one else to to vent.

  15. I sent myself to my room last night to depressurize and laid in bed reading for a few minutes before trying to tackle dinner, etc. I could hear the boy and the girl in the next room. My 9 year old was reaming him for being mean and nasty to me, swear to God she sounded like she'd been taking college level psychiatric classes or at least been listening to DS's conversations with his psychiatric REALLY well ... Countered his attacks, asked him to back up his accusations, attempted to snuff his fuse. I had to contain laughter a few times when I heard her sounding like such a little adult. "Why are you being so negative?" or "Name 5 things that mom has done that are cruel." (He couldn't name any, just kept repeating there was too much, too much.)

    She finally gave up on him and told him "I'm done listening to you." Not "shut up" or anything you'd think a 9 year old would counter with ... but "I'm done ..." LOL ... I'm half laughing and half crying because SHE is doing a better job at diffusing the situation than I am hiding in my room.

    I finally came out and started making dinner, just ignored him and got around to doing stuff I had to do. Didn't speak except to tell him his dinner was ready. (There's another of his little rants from earlier, that I only FEED him because I'd be SUED if I didn't!) He went back to his room. Gave us both a little more time and then went to talk to him about the book report.

    Gave him some time to decide what rewards or consequences should accompany each letter grade. Told him that I did not accept "missing assignment" as an option for this report. It is too important to his grade to let him get 0 points. Told him, you figure out what an A, B, C, D and E are "worth" and let him be. Later he came out and told me what he thought was fair. Pretty big rewards for A & B (I was going to protest, but in all actuality, I know better than to expect even a B at this stage, so I let them slide.) Smaller reward for a C. Rather strong consequences for a D or E. Told him to remember that HE picked those consequences himself. (No computer for weeks.)

    Emailed the AI resource room teacher and let her know what was up. His "pre-writing" exercises had been good, she had reported on an IEP-related form I'd just gotten with his report card. When it comes down to writing in paragraphs, he shuts down. Hard.

    He hugged me before bed. The mood swings are what get me the most, maybe. One minute, hates me, next minute, hugs me, next he might hate me again.
  16. The person who did the Asperger's testing was a "Licensed Clinical Psychologist" and "Board Certified Clinical Neuropsychologist" ... I believe the only specialist in our area.
  17. Marguerite

    Marguerite Active Member

    We get mood swings like this. Less so these days especially with difficult child 1, but we still have to watch it. And in our case, I can always look back and identify a trigger, so I don't think this would qualify as BiPolar (BP) or anything like that - it's just an indication of the level of anger and frustration, coupled to depression quite often, that is always there below the surface.

    I had to laugh with you at your daughter - she sounds so much like my easy child. Ability like that at her age - watch for her choosing to wither teach or become a psychologist. easy child says, "With a family like mine, what choice did I have?" but she loves her job with a passion. And she's good at it.

  18. sameold sameold

    sameold sameold New Member

    I question whether or not your childs diagnosis is accurate, these kids aren't typically mean. My AS son is so so clean when it comes to bathroom issues, he hates showers but that is more of a sensory issue than anything else, he is worried about germs and would never eat with his hands because of the stickiness or anything that might touch his hands. He really does not have a mean bone in his body, he is very lovable, the only time that he is mean is when he is misunderstood and under alot of pressure, rather internally or externally. Of course no two kids on the autistic spectrum are ever alike, but mostly what I have read, they are not generally mean. I would ask for another evaluation with someone else. Good luck, this is such a long road.
  19. sameold, he does not have an Asperger's diagnosis, that was ruled out. I wonder about Pervasive Developmental Disorder (PDD)-not otherwise specified because of a lot of the Aspie-like things that go on.

    He managed to get his book report done in school yesterday. Resource room teacher is concerned about the quality of it, but it got done and turned in.

    He is also not good with group work and is extremely critical of anyone he is grouped with. He knows he has a high IQ and is always asking what it is (I only tell him it is in the superior range which he has overheard anyway) and thinks very highly of himself. (And apparently, very little of others he doesn't consider his intellectual equals.)

    He has this vindictive complex as well. Always wanting to get revenge, retaliate against someone. Seems like he blows something out of proportion, takes an unintended slight as a personal attack, or whatever, and plots against the perp. Sometimes tries to get others to take his 'side' and help him scheme. Borderline paranoid that others are out to get him, make him look bad because he's so smart, etc.

    Depression because his grades are not straight A's like he thinks he deserves, anger at the school, the teacher, the other kids, for his lower grades. Nothing is HIS fault. Any flaw is due to someone else; he was rushed, someone took his pencil, the bus was late ... NEVER his fault. This eats at me because it smacks of his father. The man is impossible to talk to and of course any of his sons' issues are MY fault, too.

    He sees his psychiatric today after school and I am going to see if I can sit in and express where I'm at. I do not like feeling that he is such a huge stress on me and the others in our family that I'd rather he lived with his dad. I know that is not the best environment for him. Giving him more time with his dad than our visitation schedule requires, I hoped, would make things easier on us, but DS is actually worse to me the more time he spends with his dad.
  20. SRL

    SRL Active Member

    myfirstandlast, the neuropsychologist should have evaluated for Pervasive Developmental Disorder (PDD)-not otherwise specified at the same time. We don't diagnosis here but a lot of what you are relating does sound as if it falls in that Autism Spectrum Disorders (ASD) neighborhood. Exactly what did the neuropsychologist base the rule out of Asperger's on? That assessment should have been an extensive developmental history, interview of parent, input from teachers, observation of child, and formal written diagnostic tests such as the ASDS. Was all of that done and factored in? How long was the evaluation process?

    Again, we don't know what you're dealing with but our experience here is to follow a parent's gut feeling. Sometimes that means not agreeing with a diagnosis or treatment plan and it takes some thick skin to keep searching when an "expert" gave an opinion, especially after forking out all that money!

    What's the family mental health history like? Is there a history of anxiety disorder, obsessive compulsive tendencies, socially dysfunctional individuals?

    How would you answer these questions about your difficult child's play behaviors going all the way back from birth to present?

    2) Does/did the child
    a. Favor objects for play that aren’t typically used as toys by their peers (such as wheels, sticks, magnet letters, etc.)?
    b. Seem fascinated or obsessed by objects/topics that aren’t typical for kids of their age (such as numbers, the alphabet, words, math, geography, mechanical things such as air conditioners or vacuum cleaners, things with motors, etc)?
    c. Play “differently” with toys or household objects (such as spin them, line them up in straight lines, set them up in formations, etc.)?
    d. Exhibit weak or unusual pretend play skills (such as act out memorized scenes from books/films/TV/DVD instead of creating situations and dialogue, move toy trains around but not pretend to be the engineer/go places/pick up passengers, arrange pretend people or action figures but not create imaginary situations with them or have them interact with each other, etc.)?
    e. Display behaviors and/or routines that seem unusual or quirky?