somewhat good morning

Discussion in 'The Watercooler' started by mamabeardefendinghercubs, Dec 1, 2008.

  1. well we had a somewhat good morning around here this morning... difficult child 1 was actaully keeping arguments to a minimum and got dressed without a huge fit had his shower without a huge fit and even didnt freak about the type of breakfast we made him the only thing that he had a cow over was a pair of pants my husband gave him to wear today... usually the before school thing is a battle and half...I guess i was shocked because he told me he loved me and asked me to have a good day... now when your child sais he hates you everyday more than 6 or 6 times to hear him say i love you was a thrill beyound words and hten when he asked me to have a good day i started to cry funny i guess but i really felt loved by him for that 2 seconds then he left for school and while im woundering what today will bring later it was soo nice to just have a moment of love from my son... to understand why this is so special its becuase he is not a hugger or a cuddler and never has been sometimes when you hear i hate you all the time i think i forget that he actaully does love me I know for a fact i love him so much and I would do anyhting to help him out of this tornado of his... he has had a few really bad days of punching his cousin in the face and making all the kids cry so this morning was a really big treat:redface:
  2. Shari

    Shari IsItFridayYet?

    Ah....glad it was a good start to the day.

    Thanks for sharing!
  3. Ropefree

    Ropefree Banned

    Indifferance is the opposite of love. Of course he loves you. Our children struggle to communicate. The good news about a kid blaming a mother who loves them is that they are not blaming themselves. Hating "you" is easier and better than hating "me".
    Saying I HATE YOU is a school yard standard. Like "you are mean"
    It warms my heart to read about this exchange with your son and in your family this morning. Thank you.
  4. Jena

    Jena New Member

    Always nice to hear the good stuff also. Thanks for taking the time to share this. :)
  5. Andy

    Andy Active Member

    That is wonderful! Moments like these really do strengthen our faith in our kids.

    Did you thank him for the great morning? "difficult child 1, did you realize that this morning was easier than most? Thank you so much for making is such a great morning. I love you too!"
  6. Marguerite

    Marguerite Active Member

    That was good, Mamabear.

    I don't know if anyone has asked - have you had him checked out for Pervasive Developmental Disorder (PDD) in any form? It sure would explain a lot. Because what you describe sounds so very familiar to me.

    Have a look at and look for the unofficial Pervasive Developmental Disorder (PDD) questionnaire. It's not diagnostic in itself (not allowed to be) but you can take the printout to the doctor at your next appointment, see what they say.

    Anxiety can make their behaviour worse; so can a rush, so can early mornings and late afternoons. Being tired and/or hungry can also make it worse. There are also good things you can do (and teach him) to calm him down. It helps to be able to think outside the square.

  7. Marg, after reading your post I went to the web site and started reading and then i completed the checklist it came out that my child may be suffering from a moderate case of Pervasive Developmental Disorder (PDD) .. I started to cry... It truly explains alot of strange behaviours that his former pediatrician paid abasoloutley no attention to... I also feel like an idiot becuase i accepted the diagnosis of ODD not understanding what i do now .... honestly I have learned to have a very open mind to learning new ideas to help my son... thats what i spend my days doing is research and coping mechanisms I have read all the books on adhd that i can find and all the information that i could find on ODD i could find and all the information on learning to live with it... its just my way of coping my moms a librarian so that helps too now the question remains what am i going to do about this information you have given me I need to do some research but I will keep you all informed... I also would like to share that I myself fit the criteria for Pervasive Developmental Disorder (PDD) expecially as a child... thank you for taking the time to share with me this information it may mean my sons getting the proper help he needs and that is worth all the treasures in the world to me.. so tahnks
  8. Marguerite

    Marguerite Active Member

    No worries, Mamabear.

    As for possibly having Pervasive Developmental Disorder (PDD) yourself - I just came home from difficult child 3's drama class (for local kids with learning problems; many have autism) and while the kids are in the hall doing their drama class, the parents (mostly mothers) are gasbagging in the next room and having our own informal support group. One of the mothers there was singing my praises at finding answers on the internet - she calls me "Mrs Google" - and was announcing, "I'm sure you have Asperger's, you're such a fount of knowledge on absolutely everything!"

    I had to quietly giggle - in her eyes, a diagnosis of Asperger's is a POSITIVE trait. Her own son has something else wrong, but a number of us have Aspie/autistic kids (a lot of our kids were in "The Black Balloon" in the Noah's Ark segment. The film's writer/director had specifically asked for autistic kids and their siblings to do that bit).

    In my posts I often seem critical of ODD as a diagnosis - I do not mean to disparage those cases where ODD has been given as the most appropriate diagnosis. I do not say that ODD doesn't exist, only that I believe in a number of cases you can see something that looks a lot like ODD, but that has been caused by trying to discipline a child in a manner which is incompatible with their disorder, and that in those cases the stricter, more controlling parenting can produce these similarities.

    I'm told (by some people here) that ODD is very difficult to treat. However, what I have observed is that there is something that LOOKS a lot like ODD that seems to respond really well to Ross Greene's methods in "Explosive Child".

    The older a Pervasive Developmental Disorder (PDD) child is, or the smarter a Pervasive Developmental Disorder (PDD) child is, the more difficult it can be to get a firm diagnosis. Despite what people used to believe about autism, our kids generally WANT to fit in, they want to please those in authority, they try to obey and follow rules. The problem is, they have to work it all out for themselves especially when they begin to realise that people SAY one thing, but mean something else.

    Rules, for example. difficult child 3 at his mainstream school did well to begin with (although still struggled to fit in, even while he didn't realise he was different) but soon became a focus for bullies. Unfortunately the school didn't handle this well (his class teachers in a couple of his later years were not good at dealing with bullies; they always took the easy way out and really didn't watch closely enough or seem to care). So while difficult child 3 was being told, "You must not hit other children," he was experiencing other children hitting him, and not being corrected. So the official rule (in his mind) clearly was NOT the REAL rule. As he understood it, the REAL rule was, "difficult child 3 is not allowed to hit other children, but other children may hit difficult child 3."

    Also part of this - difficult child 3 would treat other people exactly as they treated him. I had also experienced this earlier with easy child 2/difficult child 2 but not recognised it. She would stand there, hands on hips as I poured a drink of milk for her, and say, "I told you, I want JUICE! Why don't you ever listen?"
    She was not being rude (in her mind) because this is how some adults (including me at the time) spoke to her, so that must make it alright.

    Mamabear, I hope I'm wrong but this is important - do the test on your other child. Some people believe that ADHD is simply Pervasive Developmental Disorder (PDD) in another form. It also can be easily missed. It also can be found in siblings.

    However, it is NOT necessarily a bad news diagnosis. I have two and a half on the spectrum, as I say. Although frankly, I think easy child 2/difficult child 2 now does fall on the spectrum more clearly. And difficult child 1 wasn't diagnosed with Asperger's until he was 14. His diagnosis was disputed for a while because he is so bright, he had adapted. He wasn't consciously trying to be deceptive and hide his problems, he had simply learned over the years to try to blend in and did it subconsciously. It was really difficult to get a good handle on him.

    It is difficult child 1 who just got married ten days ago. Ten years ago I would never have thought it possible, I wanted to wrap him in cotton wool so he'd never have to fall in love and get hurt; he was suicidal after breaking up with his first girlfriend, but she simply outgrew him, he didn't have the social maturity to maintain the relationship. But now he does. His bride is very smart, but not Aspie.

    Meanwhile difficult child 3 is an amazing kid. He scores as moderate on the Pervasive Developmental Disorder (PDD) scale, but since we took a lot of pressure off him is making amazing progress socially as well as academically. We have made a lot of adjustments for him but he is worth the effort we are making, it is really paying off.

    Like you I also have chronic illnesses. I now see this as a blessing because it has forced me to be a stay-at-home mother, which has given me a lot more options with difficult child 3. He does his schooling at home (correspondence) and is working so much more effectively at his schooling, now he can choose what to work on, for how long and when.

    When you can, look for anything written by Tony Attwood, to get a positive spin on Pervasive Developmental Disorder (PDD). Also do make sure you get those test results to a specialist who is prepared to look at it all and give your concerns some serious consideration. On this site we often recommend a neuropsychologist assessment. We can't diagnose on this site; the website test I gave you is only unofficial, you can't rely on it for anything formal but only to give you some sense of direction.

    But it does sound like you are on a more positive track for now. I'm so pleased!

  9. Marg.... I did my homework yesterday and found some disturbing problems standing in my way of getting anywhere with a diagnosis or even an assesment I live in Canada on an island called vancouver island and well there is a shortage of dr's here and none are accepting new patients i have had three dr's in te last 2 years and well right now i am at a point where i am once again starting from scratch with this.... there is no facilities to get my son assessed where I live and I found taht we have a mass case of misdiagnosis of ADHD in our community obviously some kids have it but there are alot of kids gettting mislabled do to lack of rescources ... I am currently on a path to find some one to do the tessting privatley for a price BUT my search is leading me nowhere all of the canadian Pervasive Developmental Disorder (PDD) and autism sites say theere are private phsyicians that can make an assessment but noone says where they are located.... and My experience with the pediatricians in this town havent been a good one they have under estimated alot of serious health issues with children including mine and I have been forced to take them to bc's childrens hopsitle on the main land I Looked into doing that but the sunny hill center for kids is only accessed by a refferral and thats where they can make an assessment ..IM stupified at what to do now???? looking at all of my sons history and what occured when he was a child and even now his struggles surffacing at school its becoming clear to me that this very well could be a form of autism and its like there is nothing here for it.... there are several parents in town with children like mine and there kids are going undiagnosed aswell and are being forced to make it on their own .. my mom is a librarian and has alot of connections she was telling me about her many friends and patrons in the same boat as me.... I wish i could even get my hands on a study I would gladly find away to get there in order to have my kids assessed ... sorry im ranting im so fustrated over this I feel annoyed over the lack of services for children of any disability in my town there is little or next to nothing and the wait lists are huge years long infact..... urghhhh.. free health care comes at huge cost in the quality of care and testing that you recive here in my area I my self have been misdiagnosed over and over again suffering for the last 9 years and not alot further ahead in a solid diagnosis ggggrrrrrr i could go on and on but im sure im not the only one htat is going through this type of thing i guess i just have to stay calm and think outside the box

  10. TerryJ2

    TerryJ2 Well-Known Member

    What a wonderful morning, Mamabear!
    That is so sweet.

    Just from what you've written, I would agree that it sounds like your child needs to be tested for some Pervasive Developmental Disorder (PDD).
    In the meantime, I'd buy Autism Spectrum Disorders by Shantal Sicile-Kira. I used a lot of the ideas and suggestions for my difficult child b4 we had done the testing, and they worked. I really didn't care what it was called, just so something worked.
    Even if he turned out to be totally bipolar with-no Pervasive Developmental Disorder (PDD), just the idea of routine, routine, routine was a good way to go. (And still is.)
    I hear your frustration with-your lack of resources. I'm thinking you may have to make an appointment in a big city and stay at a hotel for a cpl of days. Would that be possible?
  11. Marguerite

    Marguerite Active Member

    Tara (I hope for your future sake that is a pseudonym), there are things you can do NOW, for you and your boys.

    In a way, we had similar problems. The first pediatrician we had for difficult child 1 turned out to be a real weirdo, he diagnosed ADHD and then began to 'play psychiatrist' with me because of my chronic illness, which he arrogantly decided was primarily psychiatric in origin. The second pediatrician (we transferred when the first began to muck around with difficult child 1's dosage, purely to make me angry and get SOME kind of emotional response from me) was also weird - he seemed to be very ADHD in some respects, I look back now and wonder about unmedicated BiPolar (BP).

    The third is the current one, still not a perfect fit and now that difficult child 1 is nearly 25, it's time to change to someone for an adult.

    We still had to get our kids seen by someone else, to nail the diagnosis into place - our current pediatrician is a lovely guy, but a wimp unwilling to commit to a firm diagnosis.

    And the reason I said to begin with that I hope you didn't just give your real name, is because being incognito gives you the freedom to say things like this and be fairly sure that whoever you are talking about isn't going to track your online communications and know hat you are saying about them. You need to feel free to vent at times, to say what you really think. Sure, I could be tracked back to my real ID from this site, but I avoid telling people I know about this site.

    Things you can do now:

    1) Go back over each child's history and make a diary. I do it on the computer. Arrange it how you want, even do it as if you are writing their biography, if you like. I began with the pregnancy and the birth, but you can always go back and fill in gaps.

    2) Diary no 2 - this is the Communication Book. You would need one for each child, probably. Certainly one for the worst one. It's a marvellously simple concept. You buy a cheap exercise book (I bought a bundle of them) and a clear plastic sleeve (like the easy exercise book covers you can buy in the supermarket). I printed out a page that said, "difficult child 1's Communication Book. Friends, family and teachers, please write in here anything relevant or of interest. Please read it when he is in your care, to help you know what to expect."
    I drew a rainbow across the cover. I also made a note of the book number - as a book got filled up, the next book was labelled "Book 2" and so on.
    I would write in each book an entry when I felt there was something important to share with the teachers. "He had a rough night, he had nightmares, we think from watching 'Finding Nemo', he was upset about Nemo getting lost so far from home. So you might have a problem with him on the school excursion, he could be a bit clingy."
    The teacher might respond with, "He WAS a bit clingy, I'm glad you told me why because it meant I was able to talk to him about it. He was also very tired, he slept on the bus on the way home, I think because once he knew we were heading home, he felt safe enough to relax and sleep."
    The Communication Book replaces many of the classroom steps after class conferences that you would otherwise have. I always viewed it this way - the teacher had just had six hours of intense close contact with my difficult child. The teacher deserved the chance to get away as soon as possible after school and get home to a stiff drink. Mind you, there will still be the need for formal meetings, but you can keep these to the essentials and they will also go better when everyone has access to better information. The other side of this - never get angry with the teachers for expressing anger or frustration. Who knows better than you, how angry and frustrated your child can make you? Instead of getting angry, be grateful the teacher feels safe enough to be honest with you.

    3) Meetings with school. You can use these to help get the extra support your child will need. Much of the info on this site in terms of the sort of support that is available, should also be relevant for you and your kids too. These are basic human rights issues, most Western governments at least (and any others in the world that can afford it) try to meet these needs. The departments and topics may have different names; or they may not. Check out the Special Education forum here for tips and ideas; they should be transferable.
    What SHOULD happen - you should be able to go to your son's school and show them the printout, tell them, "I think we need to do some further enquiries with a view to getting some appropriate support in place for the school to give him the help he needs."
    The way this works in both Australia and the US (correct me if I'm wrong, folks) is that the funding for this support comes from the federal government, but the administration of it is either state-based, or the local school district. Once you identify your child as needing services, there should at least be the beginning of someone stepping forward (usually school counsellor) and saying, "We can do this, but you still need to do that," which at least gives you a sense of direction.
    A diagnosis of ADHD gives you some limited support. A diagnosis of Asperger's can open many more doors to understanding and support. However, it has been our personal experience that it often doesn't go far enough. And it's not just me being difficult or fussy - where difficult child 3 is now, the support is overwhelmingly fantastic. We're delighted with the level of support he now has, and increasingly appalled at the lack of support he had earlier, bordering on abuse.

    4) Be prepared to become a strong advocate for your child - a Warrior Mum. This isn't easy, in the face of condescension from academics who OF COURSE know better because they've done a course about it. You only LIVE with it. You will need to learn to handle problems with a combination of tact and firmness. I live in a small village and felt a strong need to continue to get on well with the people I had to liaise with; but my child comes first. It was a tightrope walk at times, there were times when I said something harsh which resulted in a teacher (and past friend) having hurt feelings; I had to learn to apologise but without compromising what I had said. Sometimes it was a simple matter of clarification. I have at times threatened legal action; I have accused them at times of discrimination and sanctioning bullying to the detriment of the wider community. But I am still good friends with these people, we say hello in the street, we stop and chat. That takes effort on both sides and it is worth the trouble. I was told recently by difficult child 3's godmother that she had been in conversation with one of these local teachers. There had been a staff meeting about one child in particular, a child with special needs but who needed some answers and a diagnosis, fast. The teachers were feeling frustrated at the complacency of the parents in the face of the child's apparently increasing deficits. "What we need," said difficult child 3's former Kindergarten teacher, "is a Marg to get in and fight for this child."
    I was flattered.

    To get your own child some help towards diagnosis - yes, a private diagnosis costs. You need to find someone capable of diagnosing as well as someone who is going to do the job properly. It took us a while to find the right people and we travelled across Sydney (a big place geographically - it's one of the biggest cities in the world in terms of the area it covers). I made a point of getting ALL my children seen at the same time, because it was becoming apparent that there was some sort of problem in common and I wanted that seen. I would hear about a doctor, I would telephone, talk to the doctor, make an appointment and then (eventually) get my kids there to be seen. Only to be disappointed over and over, to find this person didn't have what it takes to really find out. Often I was led astray by a doctor who was curious but ignorant. One doctor asked me to come in the next day - I was thrilled at the short notice. He said over the phone that he could help, he knew he could. He gave me the name and phone number of a clinical psychologist who was his personal friend who would assess all three of my difficult child kids for a family discount. Then he saw my kids - sat and listened while I filled him in, while behind me the kids were playing happily but noisily. He then (when the volume apparently reached his breaking point) stood up, shook my hand and said, "I really hope you do find the answers you're looking for. Do let me know if you ever find out what is wrong."
    I was livid - he'd promised to help, to take these kids on and fight for a diagnosis for them - and then dropped us like a hot potato. I think he only saw the kids out of curiosity and frankly I could have used my time to much better effect than simply drive across a big city purely for his entertainment.
    When I rang his friend the helpful psychologist, she was very angry. Not only were her tests inappropriate for what was needed, there would be no bulk discount and he had no right to offer one. She was booked solid for the next 18 months and each child would have cost us over A$1000 to test. We needed cheaper, faster answers.

    Where the help eventually came from - we rang the state/federal offices of the Autism Association and asked to speak to an advisor. I found out exactly what supports they had available. I had to join the mob in order to get a lot of the info and support we needed but I figured joining was a good idea on a number of fronts. I also looked for any local support network. If there isn't an autism network then look for a local support group for kids with learning problems. The law of averages says there have to be others like you, maybe many others.

    Think about how much information there is, on this website. I have learned so much here - it has made me strong, a better advocate and has helped me make some very difficult decisions with confidence. But a local support network also gives you local information which is invaluable.
    If there is no local group, then start one yourself. Again, I've done this as well. You may not need to do this for long.
    Also worth talking to - the local GP (especially one you've been using regularly). You can ask the Autism network for names of pediatricians or clinics that can asses your child. They probably have their own secret "fink list" and although they won't be able to tell you if your previous doctor is on it, they will like to know of your experiences and may use a phrase, "I would suggest you get another opinion," if they find out that anyone you're currently seeing is in the same category. (I know about that phrase - we used to do this with a support network I used to do volunteer work for).

    We had the kids seen by a local government-sponsored community health network. They weren't great, but they WERE free. At times I was made to feel like a neglectful, bad parent but I put up with it for the sake of my kids. I figured I could fight them after I got the answers I needed.
    From that clinic, we found the name of another clinic with a better reputation. I used every string I could to get the kids seen by that clinic. Slowly all the pieces fell into place.

    What is needed in Pervasive Developmental Disorder (PDD) assessment is a multidisciplinary approach. But they don't all have to be at the same clinic - we got the name of a really good clinical psychologist (private, a bit pricey) from the Autism Association. She did her psychometric assessment on all three kids (and gave us a family discount). But she couldn't give a diagnosis on her own. So we pulled in the Speech pathology assessment reports from the free clinic (they showed that difficult child 3 had a significant language delay in his history, even though by this time his language was in the normal range). This was enough for a diagnosis of autism. This diagnosis was confirmed by the specialist clinic a year later.

    For a while we lurched from pillar to post, as I found out about this person and rang them, only to find it was a dead end. I would get six names and make appointments with all six, to cancel five of them if the first lead turned out to be THE ONE. Various specialists would give us enough for the school. One bloke gave a diagnosis but referred us on. Trouble was, the bloke he referred us to was not seeing patients in clinical practice.

    The upshot of all this - difficult child 3 is now 14 and we have only JUST been told that yes, we CAN have a neuropsychologist assessment in Australia. All these years, I thought it wasn't possible.

    So, my friend, from here you and I are on the same level playing field. You are your child's best advocate. We can support one another, advise one another, but from here each of us is in the same boat.

    Right now you're angry at all the time that has been wasted. I don't blame you - we had a lot of time wasted also. But you can USE that anger to fuel you now, to drive you forward to get answers.

    if all else fails, writing letters to your MPs can help. Write to your county's Federal Health Minister and send copies to the Opposition Health spokesperson. Put "cc to..." art the bottom of the letter so the Minister KNOWS his opposition counterpart is also in the loop. They WILL fob you off but hopefully will do so by sending you some names you can try.

    It is best to at least make it clear in your letter just how far you have already enquired.
    One way or another, you and your children deserve some answers and support.

    Let us know how you get on.

  12. trinityroyal

    trinityroyal Well-Known Member


    So glad that you had a good morning with your son. Those are the moments to treasure when you are going through the rotten behaviour that we so often have to deal with.

    Reading your note about the lack of services in Van breaks my heart. I'm in Ontario, and there are some excellent Autism Spectrum Disorders (ASD) experts around here. Yes they are private, not covered by OHIP at all, but they are there.

    If you want to, please feel free to PM me. In my research over the years I've started to build up a network of people (parent advocates, experts, docs, etc.) across the country. I might be able to put a bug in someone's ear and help you to track down someone local to you, or at least closer than all the way across the country.

    Sorry for your struggles.

  13. TerryJ2

    TerryJ2 Well-Known Member

    Right now you're angry at all the time that has been wasted. I don't blame you - we had a lot of time wasted also. But you can USE that anger to fuel you now, to drive you forward to get answers.

    On many levels, this can be said for all of us. I am in total agreement. We MUST use our anger and frustration constructively and move ahead.

    LOL about the Asperger's comment, Marg! Lots of people think of it as a positive trait. Way To Go!