Blindsided by PPD_NOS diagnosis

Discussion in 'General Parenting' started by Numina, Nov 25, 2008.

  1. Numina

    Numina New Member

    Last Tuesday the child psychiatrist decided difficult child is PPD-not otherwise specified from one meeting. The one thing I knew about my son was that he was socially adept (certainly more than me).

    I'm having trouble seeing his 'quirks' as a disorder.

    I met with his teacher (& remedial teacher) on Monday. They said everything seems fine. difficult child is doing great academically and isn't 'abnormally' shy.

    difficult child's first teacher this year went out permanently on sick leave so last year's teacher filled out the psychiatric questionnaire. She found his completely withdrawn and pathalogically shy. The nutritionist found a nutritional explanation and the psychiatrist found a psychiatric explanation. Argh. <pulls our hair> This may very well be the worst birthday present I've ever received. I turned 50 yesterday.

    And it's kinda scary in all my reading about Autism/Aspergers how much it sounds like me. It's true. Hell is other people.

    husband and I are convinced that there is a problem and that difficult child needs help, certainly with writing and eating. So maybe the diagnosis is just a way to get difficult child some help?

    The psychiatrist said not to tell the school because it would 'brand' him and they would not expect as much from him. The school knows he's having 'digestive' troubles bcs he's been pooping in his pants for the last few years. I attributed this to the bad case of worms he had 4 years ago that led to anal fissures that led to him holding his stools. The GP cleaned him out with lactulose but he still was/is leaking. So we consulted a nutritionist who saw that difficult child was eating very little fiber and thought that was the cause.

    It's been a major effort on my part to get difficult child to eat some Allbran which does help a little. But he totally freaks out when he's asked to try any new food.

    I guess the next step is to find out if the picky eating is sensory related or a coping mechanism?

    And we need to know if the soiling is a coping mechanism or if he's lost sensitivity 'down there' from the long stint of constipation/withholding.

    Do I seem to be on the right track? Becuase this is all new and unfamiliar to me.

    I meet with the GP tomorrow who I hope has some experience with this and can give me some guidance.
  2. trinityroyal

    trinityroyal Well-Known Member

    First off, {{{{{HUGS}}} Numina, and Happy Birthday! :flowers::hapBday:

    As for the diagnosis, it might be worth trying to get a neuropsychologist evaluation for your difficult child. Picky eating, trouble writing, shyness, etc. can all be signs of Pervasive Developmental Disorder (PDD), but not necessarily conclusive.

    If it DOES turn out to be Pervasive Developmental Disorder (PDD), I like your phrase that you have trouble seeing difficult child's "quirks" as a disorder. This is a great way to look at Pervasive Developmental Disorder (PDD). Differences in brain wiring, not necessarily a disorder. Because the world runs on a neurotypical track, adjustments and interventions are needed to function sometimes.

    (Sorry for the rambling. It's early and my brain is not yet firing on all cylinders)
  3. Marguerite

    Marguerite Active Member

    Numina, don't let the label get to you.
    You said, "I'm having trouble seeing his 'quirks' as a disorder."
    Then don't. It's okay. I've raised my kids to see themselves as complete individuals, their diagnosis as simply a part of who they are.

    I'm left-handed. I have green eyes. I'm good at maths, science, music and I love gardening. I'm a gifted writer. I'm not good at sport. I'm short-sighted.

    difficult child 3 is right-handed. He's good at maths, science, music and computers. He's autistic. He likes people, loves to talk to anybody, has good self-esteem.

    Do you see what I mean?

    I got very angry with difficult child 3's scripture teacher years ago because she took difficult child 3 aside and prayed with him that his autism would be healed. She did it out of love for him, but totally did the wrong thing, in my book. Regardless of where your faith is, a child with autism doesn't understand the subtleties of prayer; it seems to be a magic wishing fairy for them, when the wish doesn't come true what will it do to his faith? And what sort of message does it send him, about his autism?

    For our kids, autism is simply another part of who they are. It brings problems but it also brings gifts. It is not all negative, nor all positive. it just IS.

    If you need to read something a bit more encouraging, Google Tony Attwood. He's written some good stuff about the positive side of a Pervasive Developmental Disorder (PDD) diagnosis.

    Now to your specific concerns - the picky eating, for instance. Chances are it's just another part of the Pervasive Developmental Disorder (PDD). It seems to be, for us. We dealt with it by encouraging him to try new foods but just a taste. Our line is, "You don't know you don't like it, you might be about to discover a new favourite. And you only need a tiny taste. You don't have to have any more than that."

    This will only work if he trusts you to not cheat him and if he has enough courage. This takes time. No bullying, not too much pressure - just persuasion. Incentives and bribes if necessary.

    You haven't got a sig yet so unless I search back through your posts, I'm not sure how old he is. The younger he is, the more difficult some of my suggestions will be, so temper what I say accordingly.

    First - make a list of what he likes, and another list of what he doesn't like. Engage him in this exercise, make it clear to him that you are trying to find ways to help him eat as varied a diet as possible without having to eat food he really doesn't like. If you can and if he can understand it, explain to him about nutrition and good health. Make it a lesson and perhaps discuss food in general. Keep him calm and happy though, don't challenge him. (Read "Explosive Child" - similar techniques are in use here).

    Second - look at the lists. Can you see anything in common? For difficult child 3, for example, the common factor has been creamy textures - he hates it. He won't eat gravy, sauces, cream (including frosting on cakes and filling). He's recently improved enough to have mayonnaise on his chicken sandwiches. For easy child 2/difficult child 2, she won't eat anything that has "bits" in it. So biscuits need to be plain, not nutty. If I make risotto I can't have anything in it other than rice, and stock. A casserole can have meat in it but any vegetables must be pureed and sieved. That's texture - now for flavour. difficult child 3 won't eat prawns. This means we also can rule out any other shrimp dishes, crab, lobster and similar. However, he does like calamari so chances are he will also like octopus. He recently tried smoked salmon, expecting to hate it, and found yet another food he really loves. Every time he makes a discovery like this it reinforced the good sense in taking risks and having a taste.

    Third - when you're trying new foods, make sure that he only has to taste a tiny amount and have some food he likes at the ready so he can have the taste of something he likes in his mouth afterwards. Also make a point of other people having tastes of different foods, so he doesn't feel it's just him being made to have tastes. For example when husband & I are eating at a restaurant with difficult child 3, husband & I might share tastes of each other's meals. "Here, honey - taste this steak, it's really tender," husband might say. In turn I'll give him a taste of my grilled salmon. difficult child 3 gets a taste of each.

    Fourth, if he is up to it - get him to explain what it is about the new food that he likes, and also anything about it that he doesn't like. Encourage him to describe the taste and/or texture of the new food. Even if he says he likes it, he shouldn't be expected to eat any more of it. I always make sure he always can have a meal of something he is prepared to eat. I know people can be critical of this and accuse me of pandering to his whims, but this is a fearful child who is terrified of being made to do something he dreads; by reassuring him and letting him have his choices, we've led him to where he now is much more willing to try new foods and to trust us when we say we think he might like it. And because he is now expressing what he likes and dislikes about each new food, we're learning more about why he has these fads and HE is improving his communication skills.

    This isn't a kid trying to be difficult, or wanting everyone to run around after him to give him what he wants; it's a kid with genuine problems. Forcing him to eat something he really finds objectionable shouldn't be necessary, in this day and age. It's far easier these days to prepare for individual tastes.

    I had a childhood where I had to eat what was put in front of me, and often what WAS put in front of me was not well-cooked and not great quality. My mother eventually had to compromise by allowing me to not eat meat - the meat she cooked is meat I still will not eat, to this day. She would try to hide problem ingredients in the food, and I was expert at detecting it. Maybe that is why to this day I have a perfumer's nose and can analyse a dish for its components. I found that if I had the chance to work things out for myself, I began to do better about trying new foods, once I could be sure of what food I was actually eating.

    So for those who say, "Snap out of it, he will eat if he's really hungry," I say, "would you tell someone with depression to 'snap out of it'?" Yes, a child will eat if he's really hungry. A normal child. A Pervasive Developmental Disorder (PDD) child may not. My kids are already skinny enough and very underweight. I am using every opportunity to get calories into difficult child 3, not to limit them.

    If you have a Pervasive Developmental Disorder (PDD) child, it can be challenging but it can also be wonderful. However, one thing is sure - you have to throw out the rule book and make your own, that work for you. Trust your own parental instincts and when you find something that works, use it.

    Love your child, be positive and encourage your child rather than be negative and punish. Instead of saying, "Don't do this," instead say, "Honey - do that." Give your child time to change tasks, to get started or to finish. Show your child respect, even if he doesn't show respect to you. If you make the first change and set the example, he WILL follow in time.

    Read "Explosive Child". It puts the control back into your hands, but subtly and in ways that help your child skip several stages of social maturity and development. It also works on PCs too. Your life as a parent should become easier, when you take from the book what feels right for you and begin to implement it.

    You WILL get over the shock and find reasons to smile and laugh again. Keep a diary in the meantime, write down your feelings as well. It is important now, and later.

    Keep us posted on how you get on.

  4. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Are you in the US? It doesn't sound like you are, and every country is different.
    If you ARE in the US, I'd take him for a neuropsychologist evaluation. The thing is, quirks aren't a problem unless they're a problem, if you know what I mean. If he is having trouble in his life due to those quirks, they ARE an issue. Did he have a speech delay? Play strangely with toys? Does he know how to socialize appropriately with kids his age? This is NOT the same as being friendly. Lots of Pervasive Developmental Disorder (PDD) kids are friendly, but they don't know how to socialize. They are socially "clueless." Senory issues, such as not liking food textures or maybe some materials or covering ears at loud noises are also a big deal with Pervasive Developmental Disorder (PDD). Pooping in pants can happen often because of sensory issues--the child doesn't really understand when he has to go. Often Pervasive Developmental Disorder (PDD) kids will also have strange, socially unacceptable habits--clicking their tongue, flapping their arms, tapping on everything, blurting out unrelated sentences in the middle of class, laughing inappropriately, in general, not "getting" social cues. By the way, the flapping, or tapping, or high pitched vocalizations, or arm flapping are called "stims" and Pervasive Developmental Disorder (PDD) kids do them to relieve stress. Social appropriateness is very important in life and Pervasive Developmental Disorder (PDD) kids need almost text book learning to "get" them. They also often need Occupational Therapist (OT), PT and speech to help them with their sensory issues, their physical issues (handwriting is a biggie--my son uses a special pencil) and a speech therapist can help them learn to partake in give and take discussions, rather than monologuing, as many do.
    My quirky, clueless son was diagnosed with Pervasive Developmental Disorder (PDD)-not otherwise specified at elevin, but it didn't surprise us. In fact, we saw it earlier than the doctors did. It was a Godsend because he got so many interventions and help, especially in school, and it made a huge difference in his life. At 15, he is now doing great, better than he would have been without the diagnosis.
    It is odd for a professional in the US to say not to tell the school so that's one reason I was wondering if you live elsewhere. Here, you would get a lot of help in the schools, it would be an advantage to tell them. And, frankly, diet alone won't help Pervasive Developmental Disorder (PDD)-not otherwise specified. I don't use diet at all and my son is still doing great.
    Can you give us more information about your son and where you live? Did your child have typical development? Did he like to be held?
    Last edited: Nov 25, 2008
  5. Numina

    Numina New Member

    Thanks all for the warm fuzzies. Have to pick difficult child from school now. So detailed answers will have to wait.

    No I'm not in the US. I'm in Europe.

    Normal development. He has beautiful handwriting. Has always been very cuddly.

    He's 9 yrs old. I made a signature. I hope it shows up this time.

    Hugs to all.
  6. ML

    ML Guest

    Nothing to add except I see your an older mom too as am I. My son is 10 and he is on the spectrum too. It's great that we have this support network. Your son sounds fabulous. Hugs, ML
  7. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hun, if you tell us where you live, maybe somebody here or who is lurking is also from your country and can help you more. It is different everywhere.
  8. TerryJ2

    TerryJ2 Well-Known Member

    Hi Numina, welcome.
    Yes, it is typical for specialists to see what they're looking for in ea of their specialties. The hard part is deciding whether ea issue, whether physical or mental or emotional, is something separate, or whether they all go together to form one thing.
    Clearly, your son has something going on. What you call it is the issue.
    On one hand, for ex., being cuddly seems to fly in the face of typical autism or even Asperger's. on the other hand, not every person fits every single criteria. It is a spectrum.
    I think a diagnosis like you've gotten is an aid to teaching your son, who experiences the world differently than we do. (I'm saying "we" as a non-autistic person.) These kids are smart and capable. We just have to figure out how to unlock their particular talents.
    If you are not happy with-the psychiatric's diagnosis, and you don't think enough time was spent with-your son, you can take him in for a longer appointment. with-a neuropsychologist.
    There is no one test for Asperger's (unless you're dealing with-Fragile X) but psychoeducational testing and evaluations from teachers and caregivers, all put together, can help recognize patterns.
    You've gotten some great ideas here (esp. from Marg :) )
  9. Ropefree

    Ropefree Banned

    As a parent the inexplicable behavor of adults is the most troubling difficulty I confront.
    As a parent I am obligated as a guide to confront the unique strengths my child carries in them as their gifts to our world.
    In my determination I am providing my unconditional love of my child as the filter through which my child receives their introduction to this complex world.
    Introducing new foods is especially difficult if there are reactions physically. It becomes an issue of trust, doesn't it? How can a child trust that eatting is a good idea if it hurts at any poiint?
    In terms of having a diagnosis and the steps that work to provide the support of others in their caring world the first step is acceptance and understanding what can be done.
    I do not think that "a disorder" or a "label" for something generally is a hurt thing.
    The person is themselves worthy...the things they need are not negotiable.
    We are social animals, humans, not herds in a corral that are singled out and deminished because we are unique.
    As you inform yourself and embrace this doable challenge of raising loving and preparing your child for their lifetime this is not shameful. It is as improtant to the community and the world as any other thing.
    Preparing your child and educating the educators who by chosen proffesion are
    teaching exspands the knowledge in the classroom, in the school, in the community and in the heathcare pros who serve this humanity.
    No one feels like being the leader and yet every single woman who gives birth and every man who choses to assume the role of a parent IS THE LEADER.
    Your childs disposition brings strengths into the world. As parent you are going to cultivate and nuture those to the best of your ability until the day you die. Now with intense attention and later as needed.
    What I have learned about raising a child in an environment where the social attitudes are that people are fixed like cars or they are broken is that when one boldly imposes the exspectations on a teacher like:acedemic excellance and
    the social ediquete of inclusinve care of ones fellows eventually the brittle truth is
    there are going to be those who will begin to feel so strongely as you do because they witness the facts as they are and it helps them to grow up too.
    Living with reality as it is is what, I think, is the mark of maturity.
    Whatever "it" is "it" is a fact. What your childs future holds is partly in your hands.
    When we help our children to accept themselves and to have the highest exspectations for themselves we are merely helping them get dressed for their day in the sun.
    I hope you have the CApt underpants series for your little reader. Nothing like
    Professor PooPoo PEE PEE Pants to take the stigma out of what eveybody does and most of us can and should be willing to manage with dignity and a sence of humor.
    Most boys find it enormously fasinating.
    I remember a three year old who had an accident and she was so shut down and cowering with her unneccisary shame feelings. What perked her up was hearing her Father describe having a similar problem not long ago.
    REally? She was washed over with relief.
    My son also had a terrible moment...and he was in a tree at the time.
    It takes some care to help our children know that they are productive and capable and the slips and conditions are part of being human.
    What we do first, as parents is work through our emotions about it, then we both demostrate and more honestly guide our own to learn to in kind.
  10. Marguerite

    Marguerite Active Member

    Numina, you should be able to access a neuropsychologist assessment in Europe. Until recently I didn't think we could in Australia; I've found we can, I'm still trying to track it down.

    As for cuddly - that can also happen in Pervasive Developmental Disorder (PDD). These kids used to be considered cold - they're not. They often show emotions differently, but they feel emotions very intensely. My two middle kids were VERY cuddly, to a fault. difficult child 1 would cling like a koala, I would get asked if he was feeling sick because of how he would cuddle in. easy child 2/difficult child 2 was much more outgoing but always wanted a hug or cuddle, often at the most inconvenient times. I describe her in my sig as a cuddlebunny. We had to work hard to teach her how to be more appropriate with her cuddles.
    difficult child 3 was cuddly until he started school and had to be taught to NOT cuddle his teachers! Apparently they can get into trouble if they cuddle the students... sad, really.

    If you're not happy, get a GOOD second opinion. neuropsychologist is the best, from what I've heard. You are the parent, you know your child.

    Did we suggest the Pervasive Developmental Disorder (PDD) questionnaire on It's got some good guidelines on exactly how to interpret each question. Of course it's not official, it's just something to give you a better understanding. But you can print the results and take them to your child's doctor to discuss it, have the doctor explain to you WHY the Pervasive Developmental Disorder (PDD) label has been thrown in to the mix.

    If the Pervasive Developmental Disorder (PDD) diagnosis stands, don't feel too bad. We were given a very pessimistic prognosis for difficult child 3 but between our own persistent child and our efforts on his behalf, he's doing brilliantly. Few people these days see anything unusual.

  11. Numina

    Numina New Member

    Hi! I'm in the Netherlands. Thanks for everybody's heartfelt advice.

    trinityroyal-I like the idea of teaching him to pretend he's neurotypical so that can get along in the world.

    Marguerite-Thanks for the book recommendation. I'm going to hold off on the new food battle just now. I'm so worn down. He's healthy and a normal weight thanks to chicken nuggets and pSpecial K so I can take the time to regroup for my next attack, I mean sortie.

    MidwestMom-No. He's outgoing and plays well with all other children. That's why this is so puzzling. Well if you call swinging for 45 minutes on a swingset then, yeah he 'stims.'

    ML-Thank you!

    Ropefree-No we don't have Cap'n Underpants. Will check it out. No I don't want to be a leader. bleh. & I couldn't agree with you more, let how you live your life be an example.

    Marguerite-Yeah. I always though it was strange that we coo and make over dogs and babies but not adults. Weird.
  12. Numina

    Numina New Member

    So the GP was very encouraging. She wants to put him on another course of laxatives bcs she thinks the leaking could be a sign of constipation. But I said I wanted a physical exam before she did that. She hemmed and hawed about how traumatic an exam would be but I held firm and she finally relented.

    Apparently grammar schools are different here in that all the teachers are generalists and there is a wide variety of qualifications. This is why we are advised NOT to tell the school. If an unexperienced teacher is told about this and is unfamiliar with the syndrome then that could be unproductive.

    She also started the ball rolling for a second opinion. But there is a shortage of child psychiatrists so it will delay treatment. Not really sure I want to pursue this. What if the 2nd examination finds nothing? Then where will we be?

    I read as much of the 'Explosive Child' at Amazon online as I could and it seems that I already am doing many things right. I am a consensus builder-not an authoritarian parent so I'm used to trying to come up with a solution together. I read 'Raising Your Spirited Child' ages ago. But that doesn't describe difficult child. He's passive and too accomodating. Combine that with not being able to express what he wants and two parents with strong personalities...yeah. It's a powder keg.

    He still blew up over some chap stick the other night...It stung on his chapped lips. A popsicle put that right.

    Thanksgiving went well. Considering one of us has been in tears many previous years. It was still kinda tense.

    I really underestimated how exhausting raising a special needs child is.
  13. Ropefree

    Ropefree Banned

    Hello again...I have thought of the "teachers are generalists and its best not the tell them about this"
    The No Child Left Behind has changed the idea the teachers presentation to the general class is enough. I was watching a discussion amoung teachers and the fact is that the needs of the unique indiviguals that present a teacher with the oppertunities to exspand their skill levels is what is, after all, teaching is all about.
    Because the commitment that teachers make by the choice to become teachers is
    such an enourmous undertaking any parent and every parent with a child with a
    unique learning issue is participating appropriately in education of their child by bringing the specifics that a parent is aware to the teacher.
    TEaching is a proformance art, especially those who are in the elementary levels the amount of attention and energy that I have witnessed in effective teachers is truly stunning.
    When I take my questions and insights to a teacher of my child I make every effort to determine what the teacher wants to accomplish and how they want to accomidate my learner in their care. For matters that I know work for my child I will describe it and ask what they would like to try to replace or impliment that.
    The school nurse has often been a terrrric source of insight as to what is available in the school as the school nurse is so familiar with what has been in the school population now, last year and what sorts of things have been successful.
    Often I hear parents who say that they do not want their child labeled or that Special Education is inappropriate for their child because they are taken out of regular ed.
    In my journey with my child, who was never reminial and did have an IEP the services that he did benifit from very much were not an enormous undertaking.
    The question becomes if we are not insisting that our child is recieving the services to learn and to be intigrated in general ed with their peers what is it we are doing?
    TEachers respond, in my experiance, when they are aware that these things are needed. When we leave our children to be "discovered" to have a learning deficit in one area or another or in social skills we are essentially wasting that childs oppertunity to receive the appropriate education that is a right, not a negotiable
    "gift" from the teacher or the school. That is their job: in general and specificly for the enrichment of the pupils in their classrooms.
    I also know that parents are able to make many good alternative choices to meet needs for a childs education. I personally feel that sometimes parents are simply
    lacking confidence that their child is well cared for and that may not be reality based. When a child is learning from a parent that there is something about them that is not equal to the riguers of the transition to a school setting I think that can act to disempower a child who is ultimately capable.
    Of course, if the teacher-child fit is WRONG it is an awful year. I think of my sons fourth grade teacher. She was unco-operative and so condscending to me that the administrative end of the school and others in the school intervened. On one hand I felt for her frustraation with my son: she had daughters and she was a woman who was able to effectively aply consintrated efforts over long time spans.
    My son, who is a quick learner, had then and has now a very short ablity to consintrate. Ultimately he has faired well. But NOT with that teacher. Oh no not on her watch.
    Anyway...I am hoping that you are picking up the tid-bits and the encouragement to perserver in all your desisions and inclinations. Our children make marvleous steps forward in their own time. We just keep a drummer going until they find there own and take it from there.
  14. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    To Ropefree:
    I don't know if it's just me, but I do not understand your posts. Is English perhaps your second language? I have so much trouble following your thoughts. I am hoping you do not mean that childhood disorders do not exist or that only parents and teachers should help our children because that is not true. It is more than our parenting for our kids. They need professional help in most cases. Sometimes it takes a while to get good help, but we have to keep trying.
    I am also confused because you talk about your son as if he is a teen then bring up your son as if he is in elementary school.
    At any rate, please don't minimize how much outside help and interventions are needed in so many cases. Has your own son ever had a neuropsychologist evaluation? If not, maybe that could help you help him. You seem very upset at his behavior, yet you have not indicated that he has ever been evaluated.
  15. Marguerite

    Marguerite Active Member

    About Ropefree's posts - Ropefree, I do understand what you're saying, but I have to read carefully and check myself to make sure I've got your message. It's a pity, because a lot of what you're saying is good stuff, we should be better able to understand you.

    At the risk of offending others, can I suggest you "dumb down" your comments, perhaps aim for shorter sentences and simpler words?

    I know I'm sometimes guilty of the same things, trying to express myself fluently and verbosely and all I achieve is to leave others floundering.

    My analysis of Ropefree's post (and please feel free to correct me, Ropefree, if I've got it wrong):

    Current government policy of "No Child Left Behind" now means that teachers' jobs are much more challenging, because they have to meet the needs of a much wider range of children. They also have to make sure they are giving every child the best opportunity possible, to achieve to their ability. However, while this increases the teachers' workloads it also increases the teachers' abilities to DO the job - to help these more challenging children. The more a teacher tries to help, the more the teacher learns about the scope of support available and the better they get at helping students with learning problems.

    Becoming a teacher is itself a huge commitment and the sort of person who takes this on as a career is also the sort of person capable of adapting to the wider range of children's needs.

    When a parent expresses concern about their child being labelled, they risk their child's needs going unmet unless the teacher works it out for him/herself that this child needs help. A child who is not being taught what they need, in the way they need it, with the range of help available, is a child who is missing out. It should be our job as parents to be vigilant about making sure our child is getting access to the help they may need and the education they should receive. This education for our child is a right, not something to be grateful for if we 'luck out' and happen to get it. We need to work with the teachers where possible, telling them what they need, to ensure this happens. Teachers generally do respond positively to this sort of helpful information and use it to help our children.

    Parents need to be plugged in to their children's needs and the range of educational options. Sometimes parents express concern that their child is not getting the help they need, when this in fact may not be the case. If a child gets the vibe from the parent that perhaps they're not up to coping in mainstream, this may become an unnecessary reality.

    Sometimes however, there are problems with personality clash with a teacher.

    Trust your own judgements, get what information you can scrounge and recognise that sometimes our kids take a bit longer to get there.

    My own feelings - mainstream isn't always as rosy as you painted it, Ropefree. I'm glad that it has been for you and I wish your experience could be everybody's, but sometimes it's not just the occasional teacher that is a bad fit, it can be the entire mainstream setting. I do agree with you that we need to be more open and supportive of schools and teachers where possible because when they're getting it right, they DO do an amazing job. While I have met some awful whingeing parents, I'm concerned that they seem to me to be in the minority; what I see more of (in myself as well as others) are parents too willing to believe what the school and/or the teacher tells them about their child causing the parent to back off and think badly of the child without question, when in fact their child needs the parent to step in and fight for them.

    difficult child 3 was struggling in mainstream for many reasons, not all of them due to teacher neglect or mismanagement. However, I let myself think badly of my own child when in fact he was desperate for someone to believe in him. We did have the chance to experience a really good mainstream school, and it was here that we could see where even the best mainstream setting just wouldn't be enough to meet his needs. The good school also showed us a glimpse of how bad it had been previously.

    A lot of the problems we had with difficult child 3 were due to his Pervasive Developmental Disorder (PDD)-related issues. The sensory stuff meant that he was highly distractible; the sheer number of others in the classroom meant lots of little noises and movements that just can't be avoided. difficult child 3 is extremely sociable, he loves being around other people and enjoyed the social side of school (apart from the bullying) but it really severely interfered with his ability to do the work. Other sensory issues - the labels inside his shirts, some shirts that had been stitched with synthetic thread instead of cotton thread; the slightest rip in his clothes would rapidly become a huge hole within hours; the taste, smell or texture of food (for example, class parties or other food available at school); temperature and appropriate clothing (difficult child 3 still will pull on a sweater and ugg boots even though it's now summer here). The ADHD component of difficult child 3 meant that he had a lot more difficulty with task-changing, he actually works better if he sticks at the same subject for hours instead of changing topic every half hour. Unfortunately, schools work by changing topics frequently to avoid 'burning out' most of the class.

    Many reasons.

    A point that was made to me today by a friend - kids like difficult child 3 think differently, they learn differently. If we keep trying to shove them into the same shaped hole as everyone else, we risk damaging their unique natures and losing the marvellous gifts they may have, in our zeal to make them seem "normal". Our kids will flourish more successfully if we can help them find their own optimum learning method. For some kids, this may be so different form what is available in mainstream, as to make a mainstream placement ineffective or inappropriate. That is what we have found with difficult child 3. Other kids may be able to cope in mainstream, or even do brilliantly. The point is, the more our child differs in their needs, the more closely we have to examine the whole situation and make the call - where will our child learn best? What is the optimum educational placement?

    We also have to recognise that sometimes this has nothing to do with how compassionate, skilled or capable his teachers may be - sometimes not even the best mainstream teacher can make up for problems that are within the child himself.

    Numina, as you can see we have a wide range of opinions here on this site. You are the person "on the spot" with your son, you have to have faith in yourself as parent, that you know your child best of anybody and of course have his best interests at heart. As Ropefree said, take from here what works for you and believe in yourself as a parent. You are the most qualified person to be your son's advocate.

  16. Numina

    Numina New Member

    Thanks everybody.

    Ropefree. I really do appreciate your input.

    Someone told me when I was pregnant to read everything and listen to everybody's advice, then forget it and do what I felt was right.

    First of all I'm not in the states - they don't have 'no child left behind here'. As far as labels, if I think if will help get difficult child what he needs I'll use the label otherwise since it's not a great fit with him I'll just talk about what he needs to work on. I hate keeping secrets-it uses so much energy that I don't have. But I also know that there are misconceptions about what my child is capable of - I refuse to compromise that.

    Marguerite. I think you're describing my difficult child here:

    Still processing the info. Thanks.

    It's rather astonishing the different foods difficult child has tried since I 'gave up'. lol.

    He's been doing well as far at not soiling. I'm still puzzled by the GP's wanting to put him on laxatives...especially since her exam didn't find anything amiss. Evidently it's a preparation for seeing the pediatrition.

    I hope the psychologist will enlighten me at our appointment next week.
  17. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Ok, Marg, good!
    My attitude about that though is that your child, if he has special needs, has to have an IEP in place to get the services he needs. However, that doesn't apply to people who are not in the US as every country has it's own system of helping children.
    Although I wish all teachers want to help ALL sorts of kids, I have five kids and that hasn't been my experience. Being human, teachers are diverse. Most LOVE the smart kids who really catch on fast and enjoy learning. The more challenging kids--my experience has been they don't enjoy them as much. It's really up to us as parents, no matter what country we live in, to advocate for our children and get them the help they need, whichever way our country deals with it :)
  18. Marguerite

    Marguerite Active Member

    While the No Child Left Behind legislation is US-based, it is a human rights issue which, in some form or another, would be relevant anywhere in the Western world, at least. While we don't specifically have it in Australia, our anti-discrimination legislation would cover it.

    As for "most teachers love the smart kids"... unfortunately I've seen a few who don't. Instead, they feel threatened and see a need to bring those kids down a peg or two. I was a "smart kid" who copped it form a few teachers. Admittedly that was a few decades ago, but a young friend of ours, currently aged 10, has also been in the firing line (literally - sticks of chalk and a blackboard eraser all lobbed at her when she was in first grade). She's a good kid, was doing nothing more than sitting up paying attention to the teacher. But I can picture how this kid would have looked - dark brown eyes, intense unblinking stare when concentrating - some teachers would feel intimidated and take it personally. It really set this kid back a lot, plus being told by this teacher tat she wasn't so smart after all. The girl stopped trying to achieve, for the next 18 months, until her parents changed schools. It's taken another 18 months for her to get back into her stride.

    This girl is now at a school where she is valued and appreciated, instead of the way she was actively undermined.

    Ropefree, it sounds like your experiences with teachers have been wonderful. I wish your teachers could be cloned. As with the current (correspondence) teachers of difficult child 3. Wonderful. Unfortunately, rare in my experience. A pity. Because you're right, it shouldn't be like that.

  19. SearchingForRainbows

    SearchingForRainbows Active Member

    I don't have anything to add to what the others have already said. I just want to let you know that I'm glad you found us. There are lots of wonderful people here. I've learned so much in the almost two years I've been a member. I wish I found this site when my difficult children were small.

    After reading everyone's responses, I just want to repeat that we come from many different backgrounds, have many different viewpoints, etc... So, remember to take whatever information you find helpful and disregard the rest.

    I hope to get to "know" you better. WFEN
  20. Numina

    Numina New Member


    The GP has put him on a stool softener for 20 days. It took a couple of false starts but he'll take the sweet powder in grapefruit soda. This is just a preparatory step before he sees the pediatrician.

    We met with the psychologist who is overseeing our case. As we left the meeting husband said, 'That was a waste of time!' We were given two websites and the recommendation for a very expensive book. We were told to go ahead and make an appointment with the food behaviorist-which I did. I was given the choice of a nutritionist or the food behaviorist (sorry don't really know what the translation is) a year ago and chose the nutritionist. I so regret that!

    We've countered his meltdowns with brainstorming sessions on possible ways through his frustration. I think he was just blowing up because he knew it would get him out of doing stuff he didn't want to do. But he's had some assignments that HAD to be done so we pushed, cajoled and held firm and he finished them.

    Now that I know what to look for I see so many things! The babbling-difficult child'll spend ages speaking his own form of pig-latin where all words have to start with the same letter. The intense focus-but only when it's interesting to him. How difficult child makes unusual connections which only make sense after I have him explain them to me.

    I have to admit, I've spent a little bit of time lurking at and it's refreshing how blunt they can be there. The threads about confusion on social conventions have me chuckling, why DO we do things the way we do?

    I'm trying very hard not to sink into the 'If Only's thoughts. And it's so hard to know where to direct my anger.