Discussion in 'General Parenting' started by Leisa, Aug 17, 2008.

  1. Leisa

    Leisa New Member

    Hello Everyone,
    I just found your forum and started reading, omg there are other parents that have trouble lol I thought it was just me.
    My 12 yr old son has had problems from age 3 (headbutting the wall to his nose bleed). We have had lots of lables, medications over the years (CD, depression), the latest ones are severe ODD, ADHD and learning difficulties. Last year he had 3 lots of 20 day suspensions from school,medications concerta, this year we up it to the 54mg. We had only had afew problems (runaway x2, hitting, swearing, self harm) up until a month ago. Run away at school, rude to teachers, spitting on child, pushing childs head into pole. Yesterday b/f, myself, 12yr and 8yr went to Ocean World, we watched b/f dive with sharks, all happy and good. The boys were getting abit naughty by the end of it so I said no gift shop after several warnings.12yr pouted abit. No big deal hey? Walk outside and I said lets go get some fish and chips. 12yr sat on the ground, his face changed wouldn't move, then the swearing starts and the "I may aswell be dead, goes to get up and runaway, we hold him and escort him to the car, I put 8yr in front seat, I get into back and b/f puts 12yr in with me. Im holding the seat belt on 12yr and he sceaming, kicking window, seat, me, he's trying to get out of a moving car, saying I want to die, he then grabs the seatbelt and tries to strangle himself. I grabbed it off him, b/f stopped the car and held 12yr, while I called the ambo, Ambo came asked for history and also called 3x police back ups. Then asked my permission to restraign him, I agreed and then they got him out of the car without to much trouble, 12yr shoulder is hurt and xrayed but nothing to bad, getting hit by a car would have been worse!
    12yr was fighting them all and they held him down removd his shoes, and the saftest way they said to take him to hospital was the police van. So we followed, get to the hospital they put 12yr in the safe room. He wouldn't let anyone look at him for his shoulder or talk to anyone. One valium for me and hours and hours later I got 12yr to talk to them and let them look at his arm.
    We got home just before midnight. This is the 1st major one of these we have had in 3 years. He is older bigger and next time this happens I wont be able to stop, what then?
    He see's his psychiatric every 4 to 6 weeks with me, I see an ADHD worker to tell me how to manage him. But we seem to be going down hill again?
    Sorry for the vent, just thought I would put this up and see what suggestions people have.
    Thankyou Leisa
    Last edited: Aug 17, 2008
  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    HI and welcome to the board.
    You are not alone. I have a few questions to ask you that will help us help you.
    1/ Are you satisfied with the diagnosis. I would not be if I were you. It does not sound like he has CD (which is mostly over 18 anyway). She sounds volatile and moody and suicidal. I'd want to know if he had early onset bipolar or autistic spectrum disorder, high functioning. Who diagnosed this child? What kind of professional. Did he do any extensive testing? How long ago was this? Why does he only see the psychiatrist every 4-6 weeks? That's a long gap. Also, what is an ADHA therapist?

    2/ How was your child's early development--walking, talking, eye contact, cuddling, imaginative play, ability to interact appropriately with his peers, potty training, any other "odd" behavior like flapping arms or clicking mouth? Any sensitivities to sound, light, fabric, food, transitions? Does he pick scabs or seem spaced out/zoned out or unable to sit still?

    3/Are there any psychiatric or mood disorders on either side of his biological family tree? Substance abuse? Suicide attempts? Has he been on any medications and, if so, did they help, do nothing, or make him worse?

    If it were my child, I'd take him for a neuropsychologist evaluation ASAP. The poor kid sounds like he is suffering a lot and in my opinion they have not found out what is really wrong with him. And you are suffering too when he gets out of control. I personally would feel uncomfortable about his current diagnosis. I would want a second opinion and a compete evaluation.

    If you like, here are two links you may wish to look at to see if anything sounds more like your son than what he has been diagnosed with. Ok, here they are:

    Others will come along--it can be a little slow on the weekends.
    Last edited: Aug 17, 2008
  3. klmno

    klmno Active Member

    Hello, and welcome!! I'm finishing dinner so won't be on here long but just wanted to offer HUGS and support. Answering MWM's questions will help people know a little better what suggestions to give. It sounds to me like he is misdiagnosed, too. Sorry you are going thru all this, but glad you found this forum. This has helped me more than anything else!!
  4. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Ah, wait.
    I see you're from Australia.
    That makes it hard for us. They will not diagnose early onset bipolar in Australia, I'm told (I think that's a pity, but that's what I've heard).
    Marg will come along. She is also from Australia. I know they do things a lot differently there.
    I still think he is grossly misdiagnosed. And I'm shocked that he sees a psychiatrist so seldom.
    Good luck to you!
  5. Leisa

    Leisa New Member

    Hi again,
    Thankyou for your quick responses.

    Firstly, the Adha was ment to be ADHD worker, he askes me want happens and then gives me suggestions to try and handle things better with 12yr.
    I re read my post, 12yr was trying to jump out of the car not me sorry.
    12yr early development was only a little behind, most notible was, toys destruction, wetting bed until 7yrs, he does pick scabs till they bleed.(I don't know what that means), even now wipes snot on toilet and bedroom walls.
    Family history of me, PTSD from rape, anxiety, depression, several abusive relationships where 12yr was also abused from 2yr till 8yr, we have been safe for 4 yrs today woowhoo!! Like to tap his fingers and is very loud at the wrong times constantly. It is 54mg of Concerta (12 hour one).
    There has been no extensive testing we have been on a round about for years.
    After I read your reply we went straight to the GP, he gave me a referal to HeadSpace, it is ment to be a place with psychiatric's, councillors and everything that work together as a team, sounds to good to be true. We went there they did an intake and said they usually only do 12yr-25yr as an early intervention (first onset I think for puberty kids) not kids with a history!! I told her all the trouble we have had and lack of supports also mentioned the neuropsychologist she said they do that and couldn't believe that 12yr hadn't had one. She will talk to her team and let me know if they will except us.
    I also mentioned Bipolar to GP and he said that because he is ok 90%(lol meaning I don't have incidents with him as bad as yesterday every day!!) of the time he wont consider that!!
    Now it is a waiting game to see if we get into Headspace ifnot, I can go to Westmead for the neuropsychologist.
    Thankyou Leisa
  6. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Cool, Leisha. Really glad if I helped.
    Marg will be around. She can be of immeasurable help to you and she usually tries to get around to everyone's posts. She is one of the best :)
  7. busywend

    busywend Well-Known Member Staff Member

    Sounds like you have a new plan. It is always good to be trying something new.

    Welcome to the site!!!
  8. nvts

    nvts Active Member

    Leisa! Welcome to the crowd! I'm on the "misdiagnosed" page as well!

    You've certainly been through the ringer in your life - I'm glad you're in a good place now. It helps to have friends, and that's what we're like!

    It really seems that your GP is on the ball! Congrats to you for getting your point across to the team! I'm cheering you on and hoping they'll take him for the assessment!

    Try reading the Explosive child by Ross Greene. It's a quick read, not a lot of technical talk and may give you a few ideas on how to deal with difficult child. Sounds like he's really needing some cheerleaders of his own as well!

    Stop by often, it's very comforting!

    And as was mentioned Marg from Australia will hit the post eventually! She's brilliant about many, many things and will be most helpful in your quest! We love her dearly!

  9. Marguerite

    Marguerite Active Member

    Aw, shucks, MWM, I'm blushing!

    Seriously - I think you've already made some really good suggestions.

    I wasn't surprised by the doctor's response to the bipolar query, Leisa. And given what you've described, I see Pervasive Developmental Disorder (PDD) more than BiPolar (BP). But then, I don't know BiPolar (BP) personally (or if I do, it's not by that label) and what you describe IS very similar to difficult child 3. Or rather, difficult child 3 as he used to be or perhaps as he still would be if we hadn't made a lot of the changes we have.

    Leisa, I just posted extensively on someone else's thread titled "behaviour management". Read what I wrote - I put in far too much (I do that - sorry) but I think it should help you also.

    Now to be more specific for you - I am so glad you ca access Westmead. There are some good people there, among the best in Sydney. We couldn't access it. We couldn't even get into POW with difficult child 3. Very frustrating, a lot of time-wasting.

    Your son sounds like he's going through purgatory at school (I would have used a shorter 4 letter word but that word really upsets a lot of our US friends, far more than it does us Aussies). From my own experience, the social problems caused by bullying, not fitting in, frustration, etc can easily produce what you describe.

    What also concerns me is the history of abuse you describe. While it wouldn't have done any of you any favours, I'm wondering if the history is distracting the health professionals so they're blaming a lot of his problems on that, and not looking further.

    There was an episode of "Australian Story" last Monday about the little boy whose sister died about seven years ago in Queensland at the hands of their parents; the little girl had been hog-tied and wrapped in a blanket. This had been a fairly common occurrence for both kids with these parents, but when the little girl died, the parents were prosecuted and the boy placed with his grandmother.
    The boy had a lot of problems and it took ages, and a lot of constant nagging by his grandmother, for them to investigate further. The boy was finally diagnosed as autistic. With hindsight, it's possible that the autism in the boy was causing behavioural problems in him that his parents couldn't handle, and that could have contributed to their bizarre tying up of the kids to stop them getting into mischief. Chicken and egg. In other words, if the boy hadn't been autistic, they might not have been so extreme in their methods.
    Here is a link to the transcript:

    Another example - difficult child 3 has friends at a local drama class for high school kids with various learning problems. A boy in this class turned 18 a few months ago (and was in "The Black Balloon" with difficult child 3). The boy has Asperger's Syndrome. The boy's sister is 16, was in a bad car accident when she was 2 years old. She was in a coma for weeks and has been left with brain damage. They did a lot of tests on her, because they never thought she would walk, talk or feed herself ANYTHING she can do now is a bonus. She is really amazing. But she is functionally autistic.
    Now, though, they are wondering if maybe she was autistic anyway - if she hadn't had the car accident she would definitely be a lot better off, but they think now that she would still have been autistic, or at least Aspie like her brother.

    I'm not saying your son is autistic or Aspie. The blanket label is Pervasive Developmental Disorder (PDD) (Pervasive Developmental Disorder) and I do think it needs to be at least considered thoroughly in your son's case. If you're going to Westmead, I suspect it will be. They are thorough there, I believe.

    For us, what was needed to properly assess my kids was a speech pathology assessment or report (or some history of language development - that's language, rather than speech); a psychologist's THOROUGH assessment (including a full psychometric assessment, those five hour IQ test sessions); maybe a psychiatrist's assessment and/or a pediatrician. And they still didn't always give us the right answer, not right away. We've had to keep open minds and keep asking questions.

    So for now, a few more references.

    First, have a look at and scout around. Look for the Pervasive Developmental Disorder (PDD) questionnaire. It's not a diagnostic tool, it's just something you can play with to see how it fits your son. You can print it out a(whatever the result) and take it to the doctor to see what he thinks of the idea. It also 'concentrates' all the concerns you have with his development and his behaviour, so the doctor can see the sort of things that really worry you about him.

    Second, get your hands on "The Explosive Child" by Ross Greene. Regardless of what is wrong or why, this book can help you find a more effective, easier and positive way to deal with the behaviours. It has made a HUGE difference to us. You should be able to get it in the local library (order it in if you need to, I know our local library has it and inter-library loan should get it). For a quick peek now, go to the Early Childhood forum and look for the sticky thread on the book and how to apply it to younger children. OK, your son is 12, but that thread should still give you some ideas.

    A number of the things you describe (the finger tapping, the scab picking, the "life is awful and I want to die now" just because you said no to the gift shop, the aggression at school) all sound VERY familiar to me. difficult child 3 got hit on the head with a stick at school in Feb in Year 3, I remember we were on holiday in August and he STILL had a huge hole in his scalp because he'd been picking at the scab all year. And that wasn't unusual. He STILL picks - now he's getting pimples, he's even worse. The skin on his nose is constantly raw and trying to heal.
    The snot on bathroom walls - for us it was worse. And brown. difficult child 1's ceiling is constantly dotted with mozzie corpses. He was keeping score and got upset with me when I made him clean it off. He was insistent that the corpses would act as a deterrent to other mozzies!
    Inappropriately loud - oh, yeah. That too.

    And so much more.

    Check it all out, see what you think.

    Do a sig for yourself when you get the chance, it makes a big difference. Also, maintain your confidentiality. Chances are high that you'll want to whinge about someone (like Dept of ED?) and you need to be confident that a Google on your name or any other familiar name won't find you on this site. Not that anyone here is likely to be a problem - for me, my concern is local Dept of Ed officials, or local teachers, finding what I'm complaining about here and using it to cause me trouble.
    You may be lucky, you might have really good school or teachers in your area. But that hasn't been our experience always, and even good situations can change.

    Go for the assessments and try to get a diagnosis - ANY diagnosis is better than none, even if it's wrong, because it can open doors. Special Education, support funding for school, Learning Team Support, Carer Payment/Carer Allowance, etc. I hope you're already getting Carer Payment? You need a medical specialist's report on the paperwork, plus Centrelink almost always knock you back the first few times you apply. But we qualified with both boys. Once you apply, the clock starts from that point so if you appeal and eventually you win, it gets backdated to when you applied.

    Support at school is also needed, from what you describe. I could talk to you at length about this also, but it's getting late.

    I'm generally here on a daily basis. You can also PM me if you like. I'm generally home because difficult child 3 is no longer attending a mainstream school. He now studies with Distance Education and is finally learning stuff. There ARE other options, but Dept of Ed doesn't like to tell you about them. At least, not in our area.
    We're going to be out on Thursday - a study day at school for difficult child 3, when he goes in to Distance Ed in the city (I go too). They are fabulous with him. Kids do Distance Ed for all sorts of reasons - health, isolation, a lifestyle that interferes with school attendance (such as athletic excellence or performing arts excellence) and so on. So he mixes with kids of all types, from other autistics to Brent Street performers to 'gypsies'.

    There are also special units located in a number of mainstream schools, which can give a kid a more individual program suited to his abilities and needs. Getting in requires a specialist diagnosis and sometimes some pushing (at district office level).

    What year is he in? If he's not in high school yet, then there are steps you need to take NOW to ease things for him for when he does go. High school can be a brute for difficult children.

    Again, welcome to the site. It made a huge difference to us, I am amazed at how our life changed for the better, thanks to these guys giving me the confidence and the understanding.

  10. Leisa

    Leisa New Member

    Thankyou all for your info and support and Marg thankyou for all that info too.

    Firstly I have applied twice for carer payment and got 2 knockbacks. I got a letter from the school and psychiatric saying Im on call to get him, which I do, alot of the time it is just past 9am and they call me to collect him. So those letters give me 12 months that I don't have to look for work, but I still have to hand in a form every 12 weeks, and every year go through trying to get the letters again :( I do receive the carer allowance I think its called, $100 a fortnight.
    Thats a couple of petrol runs to the psychiatric's office.
    I did the Pervasive Developmental Disorder (PDD) questionnaire and it came back as 142 Moderate Pervasive Developmental Disorder (PDD), should this be of great concern for me?? (I will be taking it next week to the psychiatric.)
    As for school, umm grrr ok, There is a lovely man teacher that has a fondness for 12yr and includes him in the sports teams he runs there and away. Without him I think our school life would be way worse or non existent. I go to big meetings there every 6 months and the Dep of Ed attend, to see if the school still need financial assistance with 12yr. Got one coming at the end of sept. This entitles 12y to an "occasion" teachers aide, (same one as last year that he hates and calls the Stalker)
    She follows him at recess he said.
    12yr is in year 5, he has repeated twice due to lack of learning,( what do they expect with so many suspensions)
    12year has been told repeatedly that if there is any trouble or boys picking on him to go to the office and just sit if he wants and not to fight back.
    The school councilor told me yesterday that these boys know how to push 12yr's buttons and they do because they want to see the show!!!!
    I'm waiting for the result of the basic skills test, should have them in a few weeks. Apparently if they are a certain percentage under the bench mark, they are entitled to $700 from the government for tuition. But counciller said he didn't know if there doing it this year! Why was I never told about this, a neighbour told me last week. We have been trying to get him in Ajuga every term, but I don't know if that would be the right thing for him and the councilor seems not to think so anymore so?
    I am extremely worried about highschool aswell, I've been trying to get doctor's to pay for tuition on the grounds of self-esteem.
    I will be in court for the next 2 days 2nd ex is trying to get custody of 8yr, I'm really worried about that, its not looking good.
    If that happens that will totally break 12yr and me too.
    So fingers crossed, waiting to get the phone call from Headspace and hopefully he got in!
    Thankyou again
    Leisa xx
  11. Marguerite

    Marguerite Active Member

    OK, I now have a bit of time to really go through this carefully.

    Leisa, the Pervasive Developmental Disorder (PDD) score you got - interesting. Definitely worth discussing with the psychiatric. I wouldn't see it as a concern, more like giving a sense of direction.

    If your son is eventually diagnosed as Pervasive Developmental Disorder (PDD), I would NOT see that as bad news. I would see it as explaining a great deal and opening doors to get you more help and better understanding.

    Kids like ours cop a lot of crud simply because of the way they behave and the way they are perceived by other people. Whether the kid has a label - that comes second. The kid cops it first. A label can explain, can make sense of it. A label doesn't CAUSE the discrimination, because generally the kid is already obviously odd one out.
    I know you didn't ask this, I'm responding to a situation I've seen too often with other people, where one of the parents (or more) or maybe someone else in the family, blocks efforts to get a formal diagnosis because they don't want the kid labelled. It's as if they would rather the kid get his head kicked in or get ostracised because of his poor social skills, rather than possibly get a bit of understanding because the child falls somewhere on the autism spectrum.

    School can be a nightmare. I think I said that. difficult child 3 has had some good teachers as well as some bad ones. Even the bad teachers clearly liked him and tried to help, but they were either ineffectual, or inconsistent, or hamfisted, or always looking for the quick easy solution to any problems. Often I was ignored, or discounted, by the bad teachers. Added to this we had problems with bullies and bullying in general was (and still is) a big problems in our local school. difficult child 3 grew to see bullying as a part of life he had to endure. He also began to learn that rules were differently applied to him.

    We changed schools for him to try him somewhere that had a good reputation for dealing with bullying. difficult child 3 was puzzled by this - it wasn't what he was used to. A kid jostled him at the new school and said roughly, "Out of my way, dummy!" and difficult child 3 just stood there and said to him, "Well go on then. Hit me."
    The kid, to his credit, ran and got a teacher (because it seemed to him that the new kid was trying to start a fight). The teacher was smart enough to work out the problem - difficult child 3's internal rule stated, "first they call you names, then comes the hitting." difficult child 3 just wanted the boy to hurry up and get it all over with.

    I am going to talk about difficult child 3, but I think what I tell you will sound very familiar to you.

    First, difficult child 3 did not learn anything at school. He's a very bright kid, he started Kindergarten already reading and doing simple maths problems. But because he was ahead of other kids, they just left him. I wanted them to give him some extension or similar, in his skill areas; but they said they preferred to work on his problem areas and to only let him move ahead once he got the regular schoolwork done. The trouble with this - difficult child 3 couldn't see the point in doing work he already knew.

    Second, he had a lot of trouble staying on task in class. There were too many distractions. He took a lot longer to begin a new worksheet, he would fuss about his pencils, his ruler, the light shining through the window and reflecting off the taps, anything. By the time he began to work, the class would be finished and it would be tie to begin something new. And it would all begin again.

    difficult child 3 had a lot of trouble getting back into 'work' mode after any break. There was always a time period when he couldn't settle.

    He was easily distracted from work mode, once he WAS working (still is). A classroom is FULL of distractions - a chair scrapes, a kid sneezes or coughs, someone else sniffs, papers rustle, pencils tap or get dropped, kids talk. Teachers interrupt to remind kids about things or to add some information. Kids ask questions. The whole lot together can totally disrupt difficult child 3's ability to get any work done.

    Over the next few years this kid who was very bright, who began school way ahead of other kids, was slowly falling behind. He could often do exams but if he was having a bad day he might get a bad failing grade. However, because they knew about his autism, they took into account the problems he had in demonstrating what he knows. He was allowed to do his exams in a room on his own, was allowed use of a computer and allowed extra time. With these allowances, he passed most exams.

    difficult child 3 had very bad anxiety and it was getting worse. His behaviour would deteriorate towards the end of each school year, with problems seeming to begin earlier each year. Finally the problems were there from the beginning. He wanted to go to school, he liked school and the chance to learn, but he was so anxious about it he was nauseous and vomiting. By this stage his teacher was insistent that the problem was physical; yet she would also accuse him of trying to make himself sick so he would be sent home. I could describe her as a female dog, but that would be insulting to all canines. difficult child 3 missed about half his school year that year, spread over the whole year. I had to get medical certificates to cover each absence. And because I refused to 'reward' his 'illness' with time off from schoolwork, I made him work while at home probably even harder than school. That was when I discovered how little he had ever learned. We began to fill in the gaps in his learning.

    Other kids can be wonderful, or horrible. The nasty kids (and sometimes even 'good' kids can be bullies, 'having fun') would deliberately stalk and target difficult child 3 purely for their own entertainment. Teachers did nothing, or worse. I won't go into it all here. But this is not restricted to difficult child 3 - ANY kid who is different, has a short fuse, is likely to rage when provoked is going to be targeted and ANY efforts to work with these kids in learning self-control are doomed to failure - the bullies are just too good at pushing the buttons and the failure of the system to prevent this can be seen as enabling the bullies. Our kids then begin to see themselves as DESERVING the bullying and beatings simply because of who they are. Teachers discipline inequitably - the difficult child gets more detention often because people are watching more closely; plus they are ill-equipped to be their own advocates.

    It needn't be like this. There are other options. And even within the system, there are some things that can make a big difference.

    Here is a list of what helped us.

    1) "Explosive Child" worked well for us at home. I wrote a summary for the teachers, but they wouldn't use it. But some techniques were a benefit and ANY improvement for us at home was due to what WE could do. I learned to ignore raging and tantrums especially if they were in response to school problems not sorted properly.

    2) A communication book. Brilliant, on so many levels. If you haven't got one of these, get one. High school might try to refuse to use it, but have a go while still in primary, get into practice. This works.
    What you need to do - get an exercise book. Write on the cover, "difficult child's Communication Book" and underneath, "Teachers, parents, friends - write in this book please. Anything good, bad or interesting. Then please replace this in difficult child's schoolbag."
    Daily (if possible) feedback is valuable. You can't understand how valuable until you don't have it for a while and the bad incidents begin to increase.
    Keep it informal and light. I also found it best to not react if the teacher said anything negative about my child - I preferred their frankness to tact, when it came down to knowing what was really going on in the teacher's mind.
    I might write in the morning, "He slept badly last night, he may be tired today and as a result, more obsessive and more distractible than usual."
    The teacher might write, "Thanks for the warning, it was good to know. He took a little longer to get working in the morning, but after lunch he worked really well, I was pleased with him."
    We used all this information to stay on top of any problems. Finding out about an incident or problem a week later is no good.
    Sometimes we'd get apparently unrelated information and because of the Communication Book, we could join the dots and be on top of the problems quickly.

    3) "School work during school hours".
    There were so many times he was home from school, either because of behaviour problems or because of "I feel sick!" or being sent home because he was vomiting. At first I would dig out his homework and give it to him to do. Then I begged work sheets from his teachers and gave him those. But I found that he worked fast and effectively at home and I kept running out. So I bought educational material of my own and also some good educational computer software.
    That was when we discovered how poor his progress had been and so we worked with him to fill the gaps. His knowledge in some areas was extremely primitive. But at home, he learned fast. I also gave him the extension work he had never been given.
    We still follow this rule - it works well for us. I can't recommend it highly enough.

    4) School problems stay at school.
    By this I mean, don't punish at home for problems that happened at school. The school will have given him their own punishment. Home needs to be a refuge from school, not an extension of it. Home can be a place where education continues but it does need to be a safer place. So if he misbehaves badly and gets suspended, then make sure the suspension doesn't have reward payoffs for him, but otherwise don't punish further. Would you expect the school to punish your son for him backchatting you the night before? Of course not.

    5) Homework can be a HUGE issue.
    You CAN put in place an option to have him not given homework. Or you can get homework given so he can do it on weekends. If your child is on stims which help him work much better, it's really unfair to expect him to be able to do homework when the medications have worn off.

    6) Reducing choices and organising tasks. While Pervasive Developmental Disorder (PDD) kids especially feel a strong need to control elements in their life, sometimes they shouldn't get too wide a range of choices. It can be difficult - a child making Choice A is thereby cutting himself off from Choice B, Choice C, Choice D, and so on. Sometimes this is too difficult. Tucked in with this is the need sometimes to structure the task, to break it up into easy steps and to work with him to accomplish each step.

    7) Motivating with reward rather than punishment. Firm control and strict discipline are not the same thing.

    8) Getting into the kid's head to think from his point of view.

    We have found a lot of these things have made a very big difference over time.

    Things put in place by either the school or education officials -
    1) Use of computer/extra time especially in exams.
    To get this you need a report on his handwriting issues (either tidiness, or floppy joints, or other issues) from an Occupational Therapist and also his treating specialist. They assess handwriting and compare it to his computer skills. If necessary, they will recommend a computer skills course. The Dept of Ed might also buy something like an Alphasmart Neo for him to use both in the classroom and in exams. difficult child 3 has one - they are very useful indeed. Not expensive, and it stays with him until he finishes school. If he changes schools, it goes with him to the new school. But it belongs to Dept of Ed.

    2) Quiet room to work in.
    It turns out this is really important for difficult child 3. It's not always possible in all schools but could be something to fight for, if your son has similar problems. It should always be possible for exams.

    3) Playground supervision.
    Sounds like you've already got this. difficult child 3 only had it for one term but it was such a huge help to him. I couldn't get it allowed again, even though it clearly worked. The reason - nobody had formally reported on the outcome, and without a positive outcome report they wouldn't justify more funding for it to continue. The playground supervision shouldn't make him feel like he is being stalked. Sounds like they're doing it wrong. He needs to be 'on board' with this or it will be counter-productive. It needs to be explained to him that the supervision is there to help him stay safe but also to help him organise games with other kids. difficult child 3's playground supervisor kept her distance considerably, and would organise games like team sports and by doing so, she was able to monitor the social interactions and make sure that problems weren't happening like kids changing the rules specifically for difficult child 3 (a common problem). She developed a relationship with him and made it clear she was there for him, not as a policeman but more like an entertainment director.

    4) Modifying the curriculum material.
    This is possible. If anything, it needs to be done. What if he were blind? Would it be right to punish him for not being able to copy accurately form the blackboard? The type of modification depends on what he needs, in order to best access the curriculum material.

    There is so much more. I can't put it all here. But there are options.

    I'm not sure if Ajuga would be right, either. I do know people who work there, I've herd a lot about it (and other similar places). difficult child 3's current placement also has kids from similar establishments so we do cross paths. A lot of those kids are there because of behavioural problems from a wide range of causes. You get the kids who are borderline criminal, as well as the kids whose behavioural problems are more related to a congenital problem rather than a lifetime of bad parenting. So you get the socially inept kids mixing with the canny thugs. The teacher attitudes CAN be really good, but sometimes they have the automatic vibe of "these kids are always trying to put one over on me" and I'm not sure that negative feel is good for our particular kids.

    There are other options. I don't know what your son's IQ score is, but if his academic progress is so poor he might qualify for IM or even IO placement. It would put him with the "dummies" but frankly, he would be safer and probably do better. Again, the work could be modified to his capability. IM & IO classes are Special Education classes for kids with lower than average IQ scores. There are about 8 or 9 kids in each class, with two teachers and a teacher's aide, minimum. All staff have to be trained specially. The other kids - tend to be NOT the bullies waiting on the street corner, if you know what I mean.

    And another option which I've been fighting for (and which has been bearing some fruit) - a Special Education class like IM or IO, but specifically for high-functioning autistic kids. This is so they can go to the mainstream classes they feel they can handle, or their home-room for everything else.

    Your son has the right to have access to the same education options as everyone else. Failure to provide this is discrimination. I do not consider a mainstream high school grade to be "providing equal educational opportunity" for a lot of high-functioning autistic kids. It certainly isn't providing safe access.

    If the best you can get is a part-time aide (and for a lot of us, it IS the best we can get) then this is not going to be enough in high school. However, if high school is where they want to send him, then they should try to transition him by acclimatising him (and you) to the high school he would be going to. Dept of Ed prefer to do this from Term 4 of Year 6, but I think you have to ask for it. We certainly had to. I think it should start well before Term 4, because you're being asked to lock in choices when you haven't yet worked out what you want. I would be talking to the school counsellor about it (or even the District Office Disabilities person) and ask to discuss options well ahead of time so you can have time to consider everything.

    If you still have concerns, be prepared to tell the department that you do not think any of the options available for him are satisfactory. And be prepared for them to say, "You have no choice."

    You DO have choice, if only because he has legal rights.

    But before you can formally access a lot of this stuff, you need a diagnosis that is a better fit.

    Home-schooling is an option a lot of parents of Pervasive Developmental Disorder (PDD) kids turn to. We chose Distance Ed, which is a state-based form of home-schooling. He has teachers, he has a school with an address, but the work is posted out to us and he does it at home.

    There is also Distance Ed primary. We transferred difficult child 3 to this partway through Year 6 and loved it.

    You don't have to be a teacher for your child with Dist Ed - all you have to do is make sure he doesn't cheat on the work. If there are any problems, you can call the teacher on the phone and talk to them about it. Or the child can. We found keeping to a routine helped a lot, but you can have flexibility too. The best thing - I could now organise my doctor's appointments and know I wouldn't have to cancel it and turn back because the school had (AGAIN!) called me to come collect my vomiting (or misbehaving) kid from the office.

    Distance Ed isn't always possible because a lot of parents can't be at home with their child or organise a supervisor. I think this is a shame, because it has made such a difference to us. But that's life, unfortunately. That's why I'd like to see more Special Education autism classes set up. There is a huge need.

    difficult child 3 has changed immensely, for the better. He's an amazing kid. He was slow to talk, he didn't respond to his own name as a toddler and he just didn't understand for a long time. He was still partly non-verbal when he started school even though he had been reading since before he was 2. Socially the gulf between him and his classmates grew wider. At school he was getting angrier, wilder, more violent. Since leaving - he's improved socially. His language now - superior. His test scores are all high, he's won awards for his schoolwork and he now is a self-starter with his learning.

    He's far from perfect, but so wonderfully improved that when people meet him casually very few know or even suspect there is any problem. He knows about his autism and sees it (now) as an integral part of his make-up. It is part of who he is and although it can be a drawback at times, it also brings talents and gifts which he wouldn't be without.

    Sorry to hear about the ex problems. What a jerk. And surely his 'achievements' with GFG14 can't recommend his parenting?

    Your son has self-esteem problems, you say. Chances are it goes way beyond self-esteem to anxiety and depression? If his problems extend to anxiety and/or school avoidance, then you have grounds to justify Dist Ed. Dept of Ed don't like Pervasive Developmental Disorder (PDD) kids taking this option because the attitude seems to be that if a kid has poor social skills, then throwing them into mainstream is what they need. In fact, it is the worst thing to shove them into mainstream. They can't pick up social skills by osmosis. If anything, they learn very bad habits socially because the examples there are so bad.

    You said, "12 year has been told repeatedly that if there is any trouble or boys picking on him to go to the office and just sit if he wants and not to fight back." - He is not going to be able to follow through with this because of his impulsivity and because there is only one of him, and quite a number of other kids all organised into a group trying to use your son as their entertainment source. For him to be always punished for the school's failure to keep him safe - I get so angry with this response from schools.

  12. ML

    ML Guest

    Welcome! Nothing to add except Marg truly is amazing and we are so fortunate to have her as part of our cyber family :)
  13. busywend

    busywend Well-Known Member Staff Member

    Ditto ML!!!!
  14. Leisa

    Leisa New Member

    Hi thankyou Marg,
    I have quickly read it and will go through it properly on the weekend.
    Guess what, we won, better than we could have hoped for, I now have sole custody of 8yr WOOWHOO
    I still don't think it has sunk in yet.
    Back on the weekend, talk soon
    Leisa xxxx
  15. Marguerite

    Marguerite Active Member

    Wow! Congratulations!

    That has got to be a big help, it should make it much easier to not have to run everything past someone else, and to always be looking over your shoulder.

  16. amazeofgrace

    amazeofgrace New Member

    <<<warm welcome hugs>>>>

    I have a good friend named Leisa until today I thought she was the only one that spelled her name that way LOL
  17. TerryJ2

    TerryJ2 Well-Known Member

    Hi Leisa,
    You've obviously come to the right place. :)
    I agree that your son is misdx'd, but that's stating the obvious.
    So sorry about the scene with-the police, but glad it got you into consideration for HeadSpace. Sometimes things work out for the best that way.
    I took the online test for my son, too, and ended up with-a 98, so I'd say yours is really leaning toward Pervasive Developmental Disorder (PDD).
    Best of luck, and nice to meet you!
  18. Leisa

    Leisa New Member

    Hi everyone,
    I hope you are all doing ok.

    Back after a really long break.
    Ive been so busy, computer broke, I had to get a new one, which took a long while.
    We did get into Headspace, 12yr has been seeing the mental health nurse every week for 4 weeks now. He is ordering a Neuro psychiatric evaluation which will happen within the month yay!!
    The school had a week long camp and I booked and paid. But he started getting worried because the bullys would be there and he wouldn't have a good time and he was worried he would get the blame.
    So we said how about staying at school for the week but he said some of the bullys are not going because they are on detension! So out of all the choices he choose to stay home with mum for the week. Between worrying about bullys and not being able to read etc... the poor boy has to cope with his father saying if you muck up this fortnight your not coming back next one!!!
    So 12yr is a klingon to me atm, he has started to cry alot, a real lot, I think your right Marg about the depression.
    We had the big school meeting last week with the dept of ed and nothing much is changing:
    *they are trying to fix the bully problem (yeah right)
    *12yrs teachers aide wants to help him but he doesn't like her, so if he doesn't want to they don't force the issue and leave it!!
    *if he is getting stressed in class, to say go out of classroom!!!!!!!!!

    I have a year and abit to help 12yr with the reading before, I think,
    that we may past our chance to help that way.
    I am really starting to agree with your Distance Ed, I have only found one decent site
    But because it is reading etc.. Would this even help?
    (I also need to consider myself in the decision, I am on occasional valium, would I be able to cope for him?)

    We got the NAPLAN results back omg
    Reading Band 3
    Writing Band 3
    Spelling not even touching band 3
    Grammar and Punctuation Band 3
    Numeracy Middle of Band 5
    Year 5 students with results in Band 3 are below the national minimum standard.
    Band 5 is 60% of Australian students.

    The last two violent episodes we have had, have both been on a full moon, has anyone noticed this with their child?

    Marg or anyone, could you please let me know more about Dist Ed?
    The costs, how to go about it etc...
    That would be fantastic, thankyou :)
    Take care everyone.
    Talk soon
    Leisa xx
  19. Marguerite

    Marguerite Active Member

    Leisa, I can't speak for other states, but we're in NSW. Distance Ed is part of NSW Dept of Ed so if your child is eligible, the cost is the same as for any other public school. In other words, nothing or minimal.

    With his reading problems, what specifically is the issue? Can he read at all? How is he if he types his answers instead of trying to handwrite them?

    If typing his answers makes it easier, he could apply to use a keyboard in class (Alphasmart Neo is a good piece of equipment which can be either bought by you, or by Dept of Ed Equipment pool, the keyboard will then follow him trough school as long as he stays in the state system). difficult child 3 was using his Alphasmart while in mainstream. He changed schools to another where the bullying was GENUINELY dealt with better, but we could still see problems that not even the best school could fix, so we pulled him out to Distance Ed - and the Alphasmart got packed up too, to come with us.

    From what I can understand, Australia is covered. Anywhere at all. The process should be similar, wherever. I had a bit of a look at each website, it looks like eligibility criteria are similar across the country.

    The eligibility criteria for us in NSW are for children who cannot attend a mainstream school for illness, anxiety, school avoidance/phobia, travel or performing arts/sports prodigies.
    For difficult child 3, we had to provide letters from his treating specialist explaining why mainstream schooling was not working out. The letter had to list his diagnosis, how that diagnosis presented (in terms of problems with mainstream), had to include specific reference to difficult child 3's anxiety/school phobia (which in difficult child 3's case were very much due to his history of being bullied) and also had to state that the problem was long-standing, likely to be still a problem in six months' time. Or 12 months' time - it depends on the institution.

    What happens, administratively - if you pull your son out of mainstream to transfer to Distance Ed, then any unspent support funding has to be sent back. Now, the school has probably already budgeted for the use of this funding. They HATE having to send it back. So if you get a very lukewarm reaction to your request at the local school, this is why. Funding is allocated on a half-year basis. So if you pull him out partway through a semester, the funds for the rest of that semester have to go back. After a certian point te school gets to keep what's left.

    Not your problem, but it helps to know. It gives you an idea of what is motivating other people you have to deal with.

    Support funding is given to the school and they are supposed to spend it to make the task of teaching your child easier. They hire an aide - but that aide is NOT your child's aide, the aide is allocated to the classroom with the student with the support. The aide may not be the one working with your child, they are there to assist the teacher. For example, the aide may go do some photocopying of bookwork in a larger size for a student with vision problems. The aide may sit with other students while the teacher sits with your child. And so on.

    To access Distance Education (primary or secondary) look for the phone number of the Intake Officer. Call them. Ask them to send you the paperwork and then you fill it in. Or talk to the intake person, explain your situation and see what they say, especially about your concerns with his reading.

    What I recall with Distance Ed Primary, was a lot of the communication with the teacher was over the phone or on cassette tape. difficult child 3 was encouraged to talk into a tape recorder, to record messages to his teacher. He could also call his teacher (and the teacher would call us too). The bulk of the set work was maths, or everything else. All written work, but then difficult child 3 is highly visual and a good reader. If your son is having trouble there, he surely wouldn't be the only one. And maybe at home with less stress and knowing he's safe from bullies, he may do better?

    As supervisor, you wouldn't have to know the work yourself. All you need to do is make sure he has somewhere to work, make sure he has what he needs to work, make sure he has access to a computer and a phone. I also help him with understanding a question (if I can) and also call the shots when it comes to calling his teacher, if he has trouble.

    Distance Ed Secondary have just tis year employed a Special Education teacher, who recently assisted with a Learning Team meeting for difficult child 3. She's liaising with his teachers to ensure that the work is set up taking into account difficult child 3's learning problems.

    I can't compare my son to yours. All I can say is he IS doing better than he was, and I believe he is doing better than he would be by now, if we'd stayed in mainstream.

    In the recent NAPLAN, difficult child 3 got into Band 9 for everything except spelling, which was right between Band 8 and 9. For Year 9, the report only ranges from Bands 5 to 10.

    What we have found - Distance Ed is much more individual. The work can be customised to each student's needs.

    Other things we found - when we began Distance Ed, we began to discover huge gaps in difficult child 3's education, topic areas I know were covered but which he simply hadn't absorbed at all. We had to go back and fill in these holes. Not good. He had no understanding of Geography, for example. Same age as your son now, and my son couldn't find Australia on the globe. Or anywhere else. We'd go on holidays and he would think we were in another country, when all we had done was drive to Canberra. (OK, no sarcastic remarks about our nations' capital, please!)

    Problems with Distance Ed - the turnaround time with the work can be frustrating. You do the work, you post it off to them (they supply the envelopes and the "Reply Paid" stickers so even postage doesn't cost you anything) and you then wait until it's marked and returned. You DO need to file it all - I use a hole punch and put the work into A4 binders. difficult child 3 works on the dining table, which currently doesn't get used as a dining table, it's buried in papers!

    With high school and different subjects/different teachers, I bought a cheap plastic drawer system from Reject Shop, one drawer per subject. When the work to be done arrives, I open the envelopes and put each subject's work into its drawer. I let difficult child 3 choose what to work on and I let him work on it for as long as he wants to - no need to put it away after an hour to get out a different subject. Not if he doesn't want to. However, if he's running behind in one area, I suggest he work on those areas as a priority. For example, he could be up to Title Page 14 with English but up to Title Page 9 with Maths. So I will suggest he concentrate on his Maths for as long as he can stand it. If he's stuck because it's a topic he doesn't understand, I call his teacher.

    The teachers generally have been wonderful. It's like they hunted for the best teachers in the system and sent them to Distance Ed. We've only found one who wasn't too great - and even she was very nice, just didn't understand that we had to modify his work. So I went over her head to the subject master and Year Advisor, and we found another way. That teacher was gone soon afterwards.

    difficult child 3 is now much more portable - we go away on holidays when we want to, take schoolwork with us. There is something really special about studying plate tectonics and vulcanism, in New Zealand! And glaciation, erosion, sedimentation, geothermal energy... so many things. We had told his teachers we were going there for a holiday and some of them modified his work for us to incorporate the work.

    One huge advantage - no homework. because it's ALL homework, but it should all be do-able during school hours. So if he has any friends he'd like to visit, or you need time for him to have therapy of any kind - you have all the time you want after his work for the day is done.

    So call the intake officer for either school and talk to them. I've found them to be very helpful people. With primary, we talked to Barbara. Secondary - Heather. When I had problems with the District Office Disabilities people trying to overturn the enrolment (which they can't do any more), Barbara fielded them for me. Her blood's worth bottling! So is Heather's.

    I hope this helps.

  20. Leisa

    Leisa New Member

    Hi Marg,
    for the info :)
    Reading: Can read a word to me slowly like artifacts, but struggles on who or now, but sometimes guess's words, even big ones.
    Starting lowest to highest on naplan: spelling,grammar and punctuation,reading, writing.
    He struggles to read anything it is always slow and alot of reminding him of sounds and break it up.
    as for area mm campbelltown/camden :)
    I would like to pm you my email if that is ok?

    I would just like to thankyou so much, you have given me so much knowledge and help that I cannot say it enough, thankyou from the bottom of my heart.
    Talk soon
    Leisa xxxx