So overwhelmed!

Discussion in 'General Parenting' started by Dara, Sep 5, 2008.

  1. Dara

    Dara New Member

    We had Sammy's Psychiatrist appointment yesterday and there is a lot of stuff going on with our little guy. First of all he does have Pervasive Developmental Disorder (PDD). Secondly he takes in maybe 1/3 of onfo presented to him at any time. He said that he does not imprint things on his brain and that sometimes all of the info sticks in his brain and other times it goes right through. He is consitantly inconsistant. We are worried about school and what he will get out of it. He is really happy that we are doing speech and working with using speech and appropriate social skills. He said that is one of the best things we can be doing. He talked about that Sammy has what he likes to call "sleepy brain" Bascially, Sammy's brain does not produce enough beta waves and one other. He is not addressing that right at the moment because we have our Neuro appointment on the 25th and will be requesting a 23 hr EEG to make sure that the seizures have indeed stopped. If they have, then the dr will go from there and deal with the "sleepy Brain" If they havent then we will do whatever needs to be done. He also showed me ways to deal with Sammy when he is violent with me (all of the time) seeing as he is getting way too big for me to physically deal with. He told me that for now, Sammy and I dont go places alone together because he is not listening to me. It is something that is being worked on but will take quite a while. He told me not to feel guilty as it is not my fault or anything that I have done. Lastly, he put Sammy on Resperdol for behavior and to help organize his thoughts. Hopefully it will work. Last night was his first dose and I was fully expecting him to be so tired today and not even wake up until late but he was up at regular time and a very busy little man so I am happy about that! So, my brain is spinning with all of this information. I am sad about it all and I am sad and jealous about my relationship with my son.
  2. TerryJ2

    TerryJ2 Well-Known Member

    Dara, that is certainly a lot of info to process, but you will grow to absorb more info as time goes on. We all become experts whether we want to or not!
    That's great that the risperdal didn't make Sammy too sleepy.
    The EEG sounds very useful.
    by the way, are you sure you want your name and his name on her all the time? You can change it to difficult child and, and your husband to husband. Just to protect their IDs, because we talk about some pretty personal stuff here.
  3. Christy

    Christy New Member

    I'm glad the doctor was able to provide some information and reassurance that you are doing the right things for Sammy. I hope the risperado is helpful. My son was on it when he was younger and it did a made a big difference in his level of agression.

  4. Marguerite

    Marguerite Active Member

    Dara, I'm glad you have a diagnosis confirmed for him.

    Remember, he IS only 3. When I think back to when difficult child 3 was only 3, I remember how worried I was and how it seemed he would never interact with anybody, never learn to talk properly, never learn to play. A year later we were told he was "borderline" (meaning "retarded") and that he would never be able to go to a normal school or achieve anything much; we were not to have any expectations, they told us.

    How wrong they were! There can be so much you can do. You've already begun speech therapy - in so many ways, you're ahead of where we were, when difficult child 3 was 3.

    I understand your concerns about going places - difficult child 3 used to run on ahead, whoever was taking him out anywhere. He wouldn't stop, he wouldn't come when he was called (because he didn't understand, he didn't recognise his own name, even) and you had to either run after him (which I couldn't) or just hope and pray he'd turn round and come back (which he mostly did). I bought a harness for him from a friend who makes them. It would be easy to modify something (if you could persuade him to wear one). What I bought - it was made form nylon webbing (like narrow seat-belt straps). It was a basic five-point harness, with a waist belt and two straps over the shoulders, plus another two loops which went from the waist belt round between his legs then back up to the other side of the waist belt. There was a short length of webbing attached to the back of the waist belt which at the end had a stainless steel D loop to which we fastened a long nylon leash. The idea was, you leave the harness on the child all the time, but depending on where you are and what you're doing, you can unclip the leash. If you put the child in a high chair, for example, you unclip the leash and then clip the child onto more webbing that is fastened onto the high chair; this is to stop them climbing out of the high chair. Similarly, in the stroller - another bit of nylon webbing that clips the same harness into place in the stroller. It saves having to keep taking the harness on and off.

    Another way of restraining difficult child 3 we used - it was a wrist strap that fastened on with velcro and then folded back through another loop and then more velcro (he couldn't remove it, not with only one hand). The other end of the wrist strap went via a brightly coloured plastic coil to another wrist strap which velcro'd onto MY wrist. That way I could show difficult child 3 that I had to wear MY wrist strap too. It wasn't him tethered to me, we were tethered to each other. This equality matters a lot to Pervasive Developmental Disorder (PDD) kids.

    Yet another method - a velcro wrist band which had no leash or anything, but did have difficult child 3's name and my mobile phone number written on it. That way if he wandered away someone could still track us down. We also used to stick an adhesive label on him (on his BACK so he wouldn't peel it off) which had his name, diagnosis and my mobile phone number. This came in VERY handy, especially in crowds.

    It's not that Sammy isn't listening to you; it's probably a combination of him not understanding the significance of what you say, plus the major distraction factor.

    Does he watch TV? Movies? Read anything? If he watches DVDs, does he watch them over and over? If so, let him. He's actually practising. We found that over time difficult child 3 began to actually use a lot of stuff he got from this sort of thing. It wasn't what we expected.
    difficult child 3's best friend (another autistic) used to do the same thing - his father said, "He's just empty, there's nothing going on in that head. He just watches a fragment ten rewinds it to watch it over, and over, and over. It just doesn't make sense. But if I try to take the remote from him, he screams."

    What both boys were doing (each at his own time) was using DVDs to try to learn the sound of the words, the look of the words (when using subtitles) and the action on the screen associated with the words. The story line - it was totally irrelevant.

    Sammy has other things going on as well, but from my own experience plus observation of other Pervasive Developmental Disorder (PDD) kids, you have to ignore their age when it comes to the usual milestones. You have to throw away your expectations. However, this goes both ways. If there is something he really likes or is interested in, let him have access to whatever he wants of it. For example, if your child is interested in numbers, then buy magnetic numbers to put on the freezer, buy blocks with numbers on them, put up a wall chart with numbers, stick up addition tables and multiplication tables, get some tapes of people counting and saying their tables. Play number games with him. Even if he's not talking - if it makes him happy then let him do it. Find ays to use what he is interested in, to extend him and try to link in with other areas. For example, if he likes trains, then a book about trains can help him with reading or learning associated skills. Some research has been done on this - if your child has savant skills, use the gifted area to hook him in to the things that are more challenging for him. We used difficult child 3's obsession with letters to teach him to read sheet music. As a result he was sight-reading music even before he was talking.

    I suspect Sammy has more potential than you believe right now. If you are feeling pessimistic, that is a good thing - it means there is only one direction to go from here, and that is up.

    A lot of how he goes now, depends on him and his determination - and on you, and your ability to think outside the square and to keep him stimulated and challenged. But only challenge him as far as he can handle at the moment. Take your time and make games of it all, as much as you can. Play with him. And remember, all play is also learning. He will know what he needs - what he gravitates to and chooses, is likely to be what he needs. Try to see what he could be getting out of it.

  5. Dara

    Dara New Member

    We are working hard with Sammy on getting those social issues down. The speech therapist is working with him on loud voice, normal voice and quiet voice. Believe it or not, at school and sometimes for us, Sammy is so quiet that I dont even think that the dogs can hear him! Sammy has the ability to converse with people if he is not overwhelmed or anxious or having a bad day. If it is a good day you can get a lot of conversation out of him. In fact at dinner tonight he recalled a story I told him of how I fell off of my bike as a little girl and I cried. Some info sticks in there and some just is gone as quick as it is given. The problem with keeping him stimulated and challenged for me is that he doesnt listen to me. He has severe behavioral issues with me. That is why we cant go anywhere alone together. We are working on fixing these issues so that we can go do stuff together and have fun without incident like he does with Daddy. I am very depressed about that situation. I am very jealous of everyone else who can do stuff and have fun without the violence and the screaming. I am relieved to hear that it isnt anything that I have done or am doing it just is.. But still it breaks my heart that it is this way. I am a preschool teacher I can handle classrooms of busy 2 year olds with no problem but my own child wants nothing to do with me. Anyways, I hope the respidol works for him and helps calm his brain down a bit...
  6. Dara

    Dara New Member

    Christy, luckily, Sammy is in pre-k during the day so it isnt an issue. I am the one who takes him to appts so... I think he mainly means going to eat and stores and what not and I am trying to do that. We also just started using a picture schedule and that helps a little bit so far! I do believe that Sammy is a very intellegent boy. I just worry about his successes in school. I dont want him to struggle and I know he has a tough road ahead and it makes me sad
  7. Marguerite

    Marguerite Active Member

    Dara, you may need to prepare yourself for the likelihood that he will need some form of home-schooling. From my own experience - the sensory input problems for difficult child 3 meant that a classroom just had too much going on in it, for difficult child 3 to be able to stay on task. He also had problems task-changing, which meant that when everyone else was ready to switch from doing maths to reading a story, he couldn't cope. And I won't even begin to talk about the social problems and the bullying - teachers can't be everywhere and difficult child 3's anxiety was already a problem; add in the number of incidents from bullies getting in an attack or even a niggle, and the problems would undermine any possible successes.

    But there have been bonuses - part of the task-changing problems is the flip side, that difficult child 3 (like a lot of Pervasive Developmental Disorder (PDD) kids) can stay ON task for a lot longer than other kids his age. As a result, he could be studying his maths (once he got started) and stay on the same topic ALL DAY. So in one day, he would complete all the required curriculum for maths for a week, or even two weeks. The same for other subjects. We found the same thing with difficult child 1, when he began learning at home. I keep hearing the same thing from other parents of similar kids. Another aspect, connected to the rule-following too, I think - they tend to get into the habit of learning and working on their education. difficult child 3 is quite comfortable about ringing his teachers if he has a problem (he is a correspondence school student; home-schooling but with teachers on call in the city on the other end of a phone). Similarly, he will come to me and ask for help if he needs it. He's had to re-learn (after many mistakes made in mainstream) that work he doesn't do, will not magically disappear if he stalls for long enough.

    One often-expressed concern about home-schooling - that the child will miss out on important social contact - is a fallacy, in my experience. School is NOT a normal social environment. Never again in your life will you have to sit in a room with thirty other people the same age as you, with an authority figure (one) controlling your environment for 6 hours a day, five days a week. Even the work environment in an office is more natural than this. And at school you have to get on with other kids. In the real world you mix with a much wider age range and cultural range. Your interactions are less intense, less forced, more under personal control and if the larger numbers of a classroom are a problem, you have more control in the real world about easing back on interacting with too many people at once. He MAY have to interact with a large group of children later in his life but then he will be interacting as an adult, not as a fellow child.

    difficult child 3, when he first was absent a lot from mainstream school, would come shopping with me. I found that he learned to interact with shopkeepers, with the checkout staff, with other customers (family as well as strangers) and he also learned more about context and appropriateness. It didn't take him long to be able to run messages for me "Here is $10, go and buy me four batteries." To run a message he had to know where to go, what to ask, how to manage a transaction and to wait for change. He was eased into it - at first I would let him watch me. Then I would let him hand the money over and make sure he waited for the change. Piece by piece, he learned what to do until now, he's confident. It will still be a long road for Sammy, but he's only 3.

    Dara, about his aggression towards you - I have a couple of thoughts. First, he feels safe with you. It's like the way some kids behave well at school then let go when they come home.
    Second, you've been the one trying to manage his behaviour and it's possible you've been using your professional skills (which have stood you in such good stead in your work). And they may just have been not quite right, for Sammy. It's "Explosive Child" stuff again, having to think outside the square and find a different method to get compliance from Sammy. The part of you that is a trained (and undoubtedly highly skilled and empathic) teacher is likely resent this, but I've found with difficult child 3, and difficult child 1, and easy child 2/difficult child 2, and their friends, you need to throw away the rule book, throw away everything you've ever learned about educational psychology, and begin from scratch.
    Third (and perhaps the most important) - Sammy is three years old. He is likely to be feeling VERY frustrated because the world is not doing what HE wants it to. We're all taught about the Terrible Twos - this is much the same, only it takes longer to set in sometimes and it lasts A LOT longer, because of the Pervasive Developmental Disorder (PDD).

    Sammy remembered the story about you falling off your bike when you were a little girl - that is revealing. He clearly values you enough to remember something about YOU. And to be able to remember the story and to understand it well enough to remember it, AND to re-tell it - that is amazing, really good, for a 3 year old with Pervasive Developmental Disorder (PDD).

    I mentioned the research into how savant skills can be used to help Pervasive Developmental Disorder (PDD) kids in education especially in subjects that they find more challenging. difficult child 3 was almost involved in this research, it was undertaken in Sydney when difficult child 3 was only three or four years old.

    You're starting much earlier with Sammy, than we were able to start with difficult child 3. That is a big advantage. You say you've begun using a picture schedule which is helping Sammy a lot - that is really great! We made the interesting discovery with difficult child 3, that if we gave him EVERYTHING - the sound of a word, the look of a word, the meaning of a word, the context of a word - that he learned the word holistically. It seemed too much at once, but if we broke the task up, it just didn't sink in. By giving it to him holistically, I think it helped him 'slot it in its place' in his own mind. I use words as an example.

    Something else that worked for us - the "difficult child 3 book". It's not strictly a social story (at least not in any sense I recognise). You may understand this better because of your training - what difficult child 3 was provided with at school as "social story" was generally a handwritten lecture (or harangue) on why his behaviour was unacceptable. It really didn't help much -he already knew, after the fact, that his behaviour was not acceptable. But his poor impulse control added to the constant needling by other kids, meant that there were repeated incidents. It's no good telling a kid constantly that he shouldn't swear at other kids or hit other kids, but when he got sworn at, and hit, over and over, then eventually he would snap and swear back or hit back.
    No, the stories I mean were purely a narrative, describing either difficult child 3's daily routine (like a children's book) or a "day in the life of" especially if it had been a special day.
    We had two main types of stories - one was the "day in the life of" which was designed to help him understand his daily routine and to follow it. We could sometimes set tis up to prepare him for an upcoming change in his routine. The second book we would have (concurrently) was the "red letter day" story.

    There are two good ways to present a book like this, especially for a younger child who can be rough on books:
    1) set it up scrapbook-style, present it in a photo album which has hard pages that are easy to turn, and where the pictures etc are protected under a plastic sheet.

    2) Cheaper, but almost as good - the folders with plastic sleeves inside that you can slide pages into. For a harder page you can also insert a heavier card between the two sheets of paper. So each plastic sleeve would have three sheets in it - the first page, the cardboard stiffener, then the next page (as you turn it over).

    I used a larger font on the computer and kept the text as simple as difficult child 3 needed, with just a little challenge. I put the text together with photos (depending on which type of book it was). For a book on difficult child 3's routine, I followed him around and took the photos. This meant asking permission of the school to get photos of difficult child 3 arriving at school, going into class, a photo of difficult child 3 and his teacher - etc. The photos were posed which meant I had difficult child 3 cooperating with the project. I didn't have too much trouble - I told difficult child 3 that I was making a book about difficult child 3 and what he did each day and he and I would make it together.
    The other kind of book - I used photos we had taken anyway, on a special family trip.

    These days difficult child 3 does this himself - when we've been on holidays he will write text himself about what we do, the things we see and anything academically relevant. He then takes photos and when we get back home after the holiday, he puts it together into a report which then gets sent in to the school. But that is a few years away for you yet.

    One "red letter day" book we did for difficult child 3 was a lovely train trip we went on. We also took note of the things that difficult child 3 was interested in - the purpose of the book was to record HIS day, not ours.
    Example: another "red letter day" for difficult child 3 was when we had lunch at Sydney's "Summit" restaurant (easy child's 21st birthday). It is a revolving restaurant in Sydney's CBD, there is a lot to see there, very interesting. But what really stood out for difficult child 3 was the elevator and the floor number.
    For easy child 2/difficult child 2's 21st birthday we didn't get to "Summit", we went to the other revolving restaurant in Sydney (Centrepoint Tower). Again, difficult child 3's main focus was not on the view out the windows, but looking the other direction to the elevators which are actually two-storey. difficult child 3 gets anxious with elevators and (I think) connected to this and perhaps part of his coping strategy, is his intense interest in them. It's like, the more he knows about them, the less he needs to fear them. So for his book, we didn't rave on about the view (we did mention it, though) but instead we made sure we took a photo of the elevator and wrote in the book what floor we were on and what the elevator was like.

    These books work well, a major factor being that difficult child 3 is in them and really likes to look at photos of himself. He would go through our photo albums and ask me what each photo was about. After I had told him, he would do it again. And again. The next day - same again. "Mummy, who is this? What are they doing?"

    With the books, I would sit with difficult child 3 and read them to him. It didn't take long before he had the text memorised and he would go through them again. When the book was "day in the life of" it meant that he was rehearsing his own daily routine. This meant I had to keep the book up to date but he soon learned to tell me of any major change.

    Dara, keep a diary of how he's going. I used the entries from his Communication Book (which is how we managed at pre-school and school). Entries here on this site would also be helpful to keep. You write down anything good, anything bad, your own concerns and also anything different or interesting. Even if you're certain you could never forget this stuff - so much happens, it is amazing what you can forget.

    You have an amazing son, but it's not going to be easy. I do feel, however, that you will find it rewarding as well as challenging. You are also an articulate, intelligent woman and I think you should consider Sammy a project well worth documenting, with a view to writing a book eventually (just before they cart you off to the retirement home for burnt out mothers!).

    I've said it before and I've been hearing (occasionally) other people saying similar things - I think Pervasive Developmental Disorder (PDD) kids are slower to reach a lot of milestones (especially initially) because their brain is wired differently and they are trying to use this differently-wired brain to do the same things as everyone else. But they can't always do it when everyone else does, they have to wait until their brain is ready. Sometimes they have to learn to use a different part of their brain to do what everyone else can manage easily - this can have interesting effects.
    When difficult child 3 was learning to talk, it was not just speech that was the issue, it was language - the concept of communication. Language is symbolism - it is very abstract. when we talk about something, we are using our words to represent what we are talking about. For difficult child 3, it was difficult initially because I don't think he had any frame of reference. Then when I began to show him words with images to demonstrate meaning plus would act out the words at the same time as saying the words and showing him the images and the written words - by giving him the lot, he had his frame of reference.
    I learned that we use an entirely different part of our brains to learn a second language, than we use to learn our primary language. I think that is because when we learn a second language we are using our primary language as a reference point. Which makes me think - I believe difficult child 3 (and maybe other kids with language delay) are having to use this 'second language' part of his brain to learn language as a whole. It would account for the delay, as well as the need to have everything cross-referenced.

    The milestones are much slower to reach (some of them) but along the road we have discovered some amazing hidden treasures tat sometimes make us deviate in different directions. Sometimes there can be shortcuts and always the scenery is unexpected.

  8. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member


    I agree with the others. Sammy is very young and early diagnosis and intervention is a great thing! It's good you have some answers. Now the real work begins......

  9. Dara

    Dara New Member

    Sammy's Pervasive Developmental Disorder (PDD) is just the tip of his issues. Sammy is what they call On that fine line of being on the spectrum. It is always a debate he does have Pervasive Developmental Disorder (PDD) he doent have Pervasive Developmental Disorder (PDD). ALl of the doctors we have seen go back and forth with it because it isnt so clear with Sammy. Homeschooling would never work for Sammy because that would mean he would have to be taught by me. He doesnt listen to me. We may have to go to a special school but he learns best away from me. As for his behavior, we have been working with ABA therapists on his behavior since he was a little over 1.With Sammy, I have never looked at handling his behavior as the kids in my class because from the time he was old enough to try those things I knew it wouldnt work with him. I have worked with many special needs children from Autistic to sever ADHD and I have been quite successful with them. I dont go by any rule book with Sammy. I just try what ever I can to help him understand what we are expecting of him. We have been trained on what to do how to react or not react what to say..... None of it has worked which is why I sought out the help of a psychiatrist. The ABA therapists who are very good, some of the best out there, have said that they have never seen a child with these extreme behaviors. Basically as far as behavior is concerned, Sammy is only violent and explosive with me. husband can take him out anywhere for a entire day and not have a single issue. I take him and the whole day is an issue. The reason this is as explained to me by the psychiatrist is this: While Sammy does not easily impring things on his brain, when he does, it is basically impossible to change. His imprint for me is anger and violence. We know why, it is because I used to teach when he was 15 months old he was in the class next to mine and he was very angry about me spending time with other children. That is when his behavior exploded. It might have exploded then anyways but his little 15 month old brain made the imprint of anger and violence around mommy. That is why he acts how he acts around me. Changing that is a very difficult and long process which we are now trying to do. His impring of Daddy is fun and games. I want that one! Hopefully that explanation isnt as jumbled as I think it is...
    As for the social situation, school is a great thing for him. We want him to function in a social situation. His speech therapist is using social stories and we have begun with picture schedules at home and school. It seems to help with me and him. We have only just begun so I am sure there will be ups and downs! It is along road ahead and I know that there will be many changes in his diagnosis and changes in expectations.
  10. Marguerite

    Marguerite Active Member

    That explains a lot, Dara. It sounds like you really have a good connection to what is happening in his brain.

    I've also found that difficult child 3 will learn something fast, with minimal exposure. And it takes him ages to unlearn it - a real headache. Bend the rules ONCE and he's on at us to ALWAYS do it the way we did it once.

    As for the resentment of you teaching the class next door - I can see how that could happen to, and I think that also is connected to the Pervasive Developmental Disorder (PDD) - difficult child 1 did a similar thing as a baby; he was in long day care form 14 weeks old (although I would still visit several times a day to breastfeed) and attached himself to one particular child care worker, even though she did her utmost to avoid it. They had strict guidelines to prevent it, nobody was permitted favourites - but when difficult child 1 attached to her (and she got yelled at often by the Director!) there was nothing much they could do about it, he would cry every time she left the room and nobody could do a thing with him. The tight attachment continued for two years, then faded a bit as he got older. She was assigned to the babies (under 2) and when he was moved in with the older ones, he would hang around the door into the nursery to check to see where she was. The Director had to move her into the older class and reassign her! By the time he was 3 though, he was happy to spend time with other staff and didn't cry when she left the room any more.

    She could never work out how it happened - I can only work it out now, with hindsight. Again, it comes down to them learning fast, sometimes from a single event.
    Have you read "Son Rise"? You might find it interesting. I'd be interested to know your take on the book.

  11. Dara

    Dara New Member

    I have never read Son Rise. I will look into that one for sure! It is amazing how you give in once and it is forever in their minds. On a lot of respects I think part of the problem is Sammy is too smart for his own good!
  12. susiestar

    susiestar Roll With It


    I t really sounds like you understand what is going on with Sammy. I am so very sorry he imprinted anger and violence with you. I know that must hurt terribly. I was incredibly hurt when my difficult child would act with incredible levels of rage and violence toward me - and he was quite socially well behaved with teachers and Daddy. It really really stunk. Hoovered actually. I am sorry you are going through it. Give yourself time and permission to grieve for the loss of your dreams associated with Sammy, and then work on having new dreams for him. It is hard to do, but worth the effort.