I'm back and need advice...

Discussion in 'General Parenting' started by rachelfran, Oct 4, 2009.

  1. rachelfran

    rachelfran New Member

    I joined this list some time ago when I thought my son was ODD ... We never got a diagnosis and it wouldn't have mattered anyway...

    He was in a CTT class for K & 1 and moved to a gen ed class for 2nd grade .. he gets Occupational Therapist (OT) & PT and had speech until it was decided that he didn't really need speech anymore and the time would be better used for counseling - as the reason the speech wasn't working was because he wasn't willing to work in the small group. The speech therapist thought he would be better served if counseling dealt with his difficulty working in a small group. That happened at the end of the school year and over the summer we moved to a new area and a new school.

    At the new school - we are still waiting for the Occupational Therapist (OT) & PT to begin and he's met with the counselor and had one session with a small group. Max really has a hard time socially and will often sit out of projects in class where he is supposed to work with other kids. As he gets older this is becoming a bigger problem since classes often require this on occasion and it's graded.

    Outside of school he sees a therapist for one on one counseling and a music therapist - which is really just for fun as it's a friend who sees him for free.. He enjoys it and it helps a little with self confidence.

    Our big problem right now is behavior in class. This has been going on for a long time but it's worse now in this new school - which is very strict. He talks back to the teacher - when she announces that it's time for something new he almost always says - loudly - why do we have to do that? and i don't want to.. etc. He whines and complains about everything and if i try to promise him things for behaving correctly - he'll say things like - I don't think I can do that -- meaning he doesn't think he can behave well. I offered to buy him a game that he wants if he can come home with a good report three days in a row and his reply was that he didn't' think he'd be able to do that. He won't even just say that he will try.

    In addition, the teacher tells me that on occasion Max refuses to participate in the lesson the rest of the class is doing. He acts bored or disinterested and will read a book while the teacher is teaching... I can't believe his audacity.

    Fortunately, for the time being ... he's doing fine academically ... though as third grade gets harder I can't imagine this will be the case for long.

    I'm a bit at my wits end. I seriously don't' know what to do about this ... I'm considering Karate as it may help his focus and discipline but I don't know if it really works. Never mind that I really don't have the money for that ... Added is the fact that my son doesn't enjoy physical activity at all - preferring to be on the computer or a video game. He doesn't want to take Karate - so I'd have to force him. I did speak with someone today at a local street fair from tiger schulman and they said they've had success with kids on the spectrum (not that my son is) and they have an assistant that works in the classes with special needs classes so they are used to dealing with some non traditional kids.

    Any thoughts or similar situations out there? anything that works?

  2. smallworld

    smallworld Moderator

    Have you ever had your son evaluated by a neuropsychologist? Do you have any idea what is driving his behavior? He could have anxiety, a learning disability, a spectrum disorder, a mood disorder, or any number of childhood disorders, but it's impossible to treat it if you don't know what it is.

    Furthermore, does he have an IEP? If not, I'd recommend starting the ball rolling on a school evaluation so you can get him the help he needs there as well. IEPs are for kids who have behavior issues in class, not just academic issues so your son could very well qualify.
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I suggest he see a neuropsychologist. I believe that he can't behave and that transitions are hard for him. He has many red flags for Asperger's Syndrome or some other form of autistic spectrum disorder, and, whether he has that or something else, a neuropsychologist is a very intensive tester and will likely help you more than any other sort of professional (as far as diagnostics). You can't treat what you don't understand.

    I'm not sure anyone here can help you without knowing what is wrong. Most of us don't believe that ODD stands by itself, but rather that it is caused by another, bigger disorder. His behavior, especially socially, really sounds like Autism Spectrum Disorders (ASD) to me...a layman's answer.

    Please see a neuropsychologist. Lots of Autism Spectrum Disorders (ASD) kids can do the school work, at least in the early grades. What they can't handle is socializing, anxiety, loud noise, often they have trouble writing, often they have large vocabularies but can not hold a give-and-take conversation, often they SEEM disobedient when they are just frustrated and very often they are very quirky kids who tend to get picked on by peers again when they get older...and without early intervention it is hard for them to function in real life. With interventions, they can do really well.

    If it's something else, a neuropsychologist can diagnose that too. They tend to do 6-10 hours of intensive testing in all areas of the brain. Even a psychiatrist does not test as much. Therapists and educators are poor diagnosticians. They can help a lot, but only after the diagnosis and your direction as to what is wrong. It is NOT your parenting style although many differently wired kids require unusual parenting techniques.

    Good luck, whatever you decide to do.
  4. rachelfran

    rachelfran New Member

    thanks for your replies...
    He does have an IEP -- that's how he gets Occupational Therapist (OT), PT and counseling in school.
    He sees therapists outside of school and all the "experts" we've seen have not thought he was on the spectrum so he remains a mystery.

    I don't really know how to go about getting the neuropsychologist done within the confounds of our insurance - which allows for no out of network charges and as I understand can run in the thousands of dollars....
  5. flutterby

    flutterby Fly away!

    What about a Developmental Pediatrician? He does seem to have red flags for Autism Spectrum Disorders.
  6. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Get a referral from a pediatrician.

    Unless you've had a neuropsychologist evaluation or a recent evaluation from a Developmental Pediatrician, you don't know if he's on the spectrum. We got "No" too until it was obvious that it was "yes."

    Therapists, school educators and testers, even psychologists tend not to do the proper testing for Autism Spectrum Disorders (ASD) so they go in the wrong direction, blame the parenting, try behavioral therapy, and ignore the core issue. If he doesn't have it, he is sure close.

    You probably can get coverage if your pediatrician will refer you.

    Good luck, whatever you decide to do. I don't think going this way, however, is going to help your precious little guy.
  7. Marguerite

    Marguerite Active Member

    If you really can't afford a neuropsychologist, there can be other pathways.

    You already have speech pathology reports (I presume?). Gather them together, especially the earliest ones. Get together other reports, especially from behaviour assessments etc. Any psychologist reports. Then hunt around for a pediatrician who has a reputation for working with kids with ADHD and/or autism. If the pediatrician is also broader in experience, so much the better. Take along all reports. We actually have all these reports scanned into our computer, so we can email them as pdf files, or simply print them out. Taking originals risks losing them (or losing a page here or there) while you wait for the office secretary to copy them. better to always have back-up copies.

    Also take along with you any stuff you yourself may have done on the Pervasive Developmental Disorder (PDD) questionnaire on www.childbrain.com. Even if they tested as normal. It's a useful questionnaire even if it's not officially diagnostic. It can still be used by a health professional to indicate your own recollection of the degree of these problems at the time you did the test yourself.

    Armed with all of this, it could help with some more specific answers. And who knows? There could be some way later on that makes a neuropsychologist assessment possible.

    But you can get things done in part, from various agencies, bit by bit over time. The art is in putting it all together.

  8. smallworld

    smallworld Moderator

    Neuropsychologists in private practice are not always covered (that is our experience). But if the neuropsychologist works at a children's or university teaching hospital, insurance often picks up the tab. You might have to drive a distance, but it would be worth it.
  9. rachelfran

    rachelfran New Member

    thanks again for the advice ...

    if ... I do end up with a spectrum diagnosis .. what then? sorry to be so broad but we've never had an actual diagnosis of anything and I'm not sure I'd know where to begin.

    Thanks -

    We're in Brooklyn, NY if that matters.

  10. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Then your child wll get interventions and learn how to socialize and be appropriate with others. My son is on the spectrum.
  11. TerryJ2

    TerryJ2 Well-Known Member

    Welcome back, Rachelfran.
    I agree with-MWM. This has all the signs of Asperger's: He talks back to the teacher - when she announces that it's time for something new he almost always says - loudly - why do we have to do that? and i don't want to.. etc. He whines and complains about everything and if i try to promise him things for behaving correctly - he'll say things like - I don't think I can do that.

    If that's the diagnosis (and if I were you, I would behave as though it is, because the interventions are great, no matter what he has), you will have to train him to accept the teacher as an authority, and that when she says it's time to change tasks, it is time. Period. Now, you also have to "train" the teacher. IOW, she will have to cue him b4 she actually announces the change to the class. Maybe ea am, have her take him aside for 30 seconds and say, "First, we have homeroom, then math, then English, then recess. It is always in that order. I will give you a signal 5 min. b4 I announce the change to the class, so you can prepare for the change in your mind." (I would suggest something subtle so that he doesn't risk being ostracized by his classmates.)
    I would also get him on antianxiety medications. B4 our son was diagnosis'd, he ended up in the psychiatric hospital, and they put him on Clonidine. It's a heart medication for adults, used off-label for kids. It took the edge off his anger, which was caused by his anxiety. (Note that girls tend to cry, boys tend to yell. Sorry to stereotype, but it happens quite a bit. The end result is an out-of-control, nonfunctioning kid.)
    You must have routine, routine, routine.
    on the other hand, you must teach him that routines break down, which does NOT translate into a breakdown on his part.
    When my son was little, our child psychiatric told me to take difficult child on errands, tell difficult child where we were going, reverse or mix up the order, and plan on a meltdown.
    Bingo. Meltdown. Since I was deliberately causing the meltdown, interestingly, I did not melt down. (And yes, I was contributing to the problem.) All of a sudden, I felt empowered. I understood where the meltdown was coming from and I had control.
    After several weeks and mo's, difficult child calmed down. He realized that I was still his mom, we were still in the same car, and we would eventually go home when we finished. (He also realized I was in charge, something we work on every single day.) Sometimes during errands, during the "training phase," I would throw in a curve ball and take him for a nice surprise, like a slurpee or a hamburger. (Amazing that even Aspies can deal with-change when it works in their favor, LOL!) Sometimes, I would rattle off a list of places to go, knowing I would not do all of them, and cut the list short. I'd say, "Would you rather go to the carwash or go home?" Of course, he said, "Go home." That made him feel empowered. (I had to be careful not to let him do that if he was raging or even raising his voice, because these kids will argue until they keel over and they never give up.)

    Throughout all of this, your difficult child will learn how to control his anxiety and other emotions. It's a very, very slow and painful process, but there IS hope.
    medications really help some Aspies.

    If your son ends up with-a diff diagnosis, say, "regular" anxiety, and is not on the spectrum, I would still recommend intervention and behavior modification.
    He will learn to slowly enter into situations that make him nervous, and ea time he does it, the anxiety will lessen; desensitization. (At least, that's the idea. ;))

    Sometimes talking up a situation just b4 he gets somewhere will calm him down. Depending upon your son's personality, that could ramp him up and make him worse. You know your son better than anyone.
    A lot of this is trial and error.
    The medications help, but they are not a cure-all.
  12. TerryJ2

    TerryJ2 Well-Known Member

    P.S. It will help your son with-difficult tasks, when he says, "I don't think I can do that," if you break the task into smaller pieces. "Do your homework" is too big of a task.
    "Let's take a look at your first math problem," is better.
    I learned that the hard way when I told difficult child to clean his room and he had a fit. Finally, he just stood in the door, sobbing, and said, "I don't know what to do."
  13. susiestar

    susiestar Roll With It

    Terry has some awesome advice. The others do too.

    My difficult child had one sp ed teacher in elem school (long story). It was in 5th grade and she probably was the best teacher he ever had.

    She taught ALL of the students to "Roll with it". She did things similar to what Terry described and used that exact phrase to help the kids talk through it.

    in my opinion it was a great lesson for school AND for life. Wiz still calms down about things if you tell him to roll with it.
  14. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I thought when your son said "I don't want to do that" when the teacher announced a change it was because Aspies HATE transition and change. They don't do it well, and it's NOT their faults. Their social skills are non-existent to poor so they may blurt out in front of class. They also tend to see adults and peers as equal rather than above them, which is sometimes why they treat them that way. They require a lot of interventions and often small classes, even if they are bright.

    My son is sixteen and doing well. He's still quirky, but all in all, he's doing really well. But he had tons and tons of interventions and they made all the difference.
  15. Marguerite

    Marguerite Active Member

    A spectrum diagnosis not only needn't be the end of the world, but it can be the best thing, under the circumstances.

    What we found - once we knew what we were dealing with, we had a much better idea of what to do.

    We had made a lot of mistakes with difficult child 1, and a lot early on with difficult child 3, because we were worknig on the assumption that he was able to change his behaviour, that somehow he was continuing to behave badly because he chose to.

    Now I look back - I understand how crazy that makes me, to beelive that for so long.

    But once we knew we were dealing with autism, it opened our eyes and made it possible for us to see that the problem here was a child already donig his best (and more) to fit in, but hampered by a world that didn't make sense or seem to have any innate rules.

    A kid on the spectrum will try to fit in, but may get to a point where it's just too difficult to keep trying. Often this happens when they're more tired, or not well. End of the day is often bad. A day full of new things can also be bad. Too much distraction, too much noise or sensory input can also throw a spanner in the works.

    We began by using the child himself as our starting point. This is who he is. This is how he is. Let's try to feel what he feels, think like he thinks, and work from there. Examine his world through his eyes, ears and other senses. How should he respond?

    Now think again - what do I want him to do? And given how he thinks/feels, how can I use this knowledge to lead him from his comfort zone, into a place where he can learn to do what we want him to?

    It's a long journey, but there are joys in it for all of you. There are gifts that are an integral part of autism - they are generally intensely loyal. Also loving, which is a surprise to people with the older view of autism (the "cold" child, the emotional cripple). These facets were simply not recognised in the past because in autism, the child often shows these emotions iin ways WE don't always recognise.

    Autism is a communication disorder and a social disorder. People often consider the withdrawn child to be typical. But an autistic child CAN be outgoing and want to socialise. They're just not good at it because they don't have that "social sense" that everyone else has, that method of learning appropriate social interaction by osmosis. There can be other factors interfering, such as phobias, Obsessive Compulsive Disorder (OCD), sensory issues. Example - difficult child 1 loved being held and hugged. He would climb into your lap for a cuddle and stay there. difficult child 3 would only hug if you asked for a hug and then only for a fleeting second. He will only allow physical contact on HIS terms. easy child 2/difficult child 2 would want to hug and cuddle all the time, she would never stop to check if it was a good time. I might be rushing around the kitchen making diner, stirring one pot while chopping vegetables to put in another, and she would grab me for a cuddle (and not let go for long minutes). I had to push her away or dinner would burn, then she would cry that I didn't love her. easy child was like difficult child 3 - as an infant she would only allow herself to be held while she was being fed. When SHE decided she had had enough (or when the distractions around her were greater than her ongoing need for feeding) she would push away and try to get me to put her down on the floor so she could play.

    Every kid is different. There are therapies available but in our case we have had very little access to formal help. We live too far away from the main Sydney centre for autism assistance, plus what there IS available in our area is in too great a demand. So we had to work a lot of stuff out for ourselves.

    There are two important things you need to do -

    1) Keep him happy, give him what he wants. To a point.

    2) Keep him off balance, as much as he can stand it.

    A third thing - keep him stimulated, academically especially. Use the same two rules above - give him what he wants academically, but also give him (in small doses) what he tends to avoid, in order to help him adapt to it.

    You need to keep him broadening his horizons.

    Of course there is professional help if you can get it, and there will be times you will value it greatly. Some things are better if you can get professional helop, but the vast majority, you actually can do yourself and see him flourish.

    "Explosive Child" rules will help you a great deal, because they allow the child to set the pace and with autistic kids, this is often very important. The world is a very chaotic place to them so they have an urgent need to feel they can direct their environment as much as possible; it needs to follow the rules they understand. This means they need to understand exactly what is going to happen and why. Instructions need to be clear and unambiguous. HUmour is OK but you need an agreed signal to help him understand that there IS a joke (puns are the first favourites). Teaching him to look for a smile to indicate a joke is being told/has been told is a good start. Learning yourself to smile when you are joking with him is another.

    Do not use sarcasm or allow sarcasm to be used around him, juntil you feel he is sufficiently socially capable to understand it. Ignore the calendar and "you should be able to do it at your age." I actually had this as an issue a few days ago - husband, difficult child 3 & I went on a train trip to the Southern Highlands where it was very cold. The Sydney forecast was gonig to be a lot colder tan usual anyway; Southern Highlands perhaps ten degrees colder still. husband told difficult child 3, "make sure you're warm enough, put on another layer."
    Unfortunately, that was not suficciently specific. difficult child 3 didn't understand just how much colder it was gonig to be, so he pulled on his usual sweater over his t-shirt and thought it would be enough. It wasn't.
    Later that night after we got home, difficult child 3 was saying to his aunt, "I was really cold. I didn't know it was going to be so cold there."
    husband said, "I did tell you to dress warmly."
    I said, "Ah - that explains it. You weren't specific enough in your instructions. You perhaps should have warned him of the expected temperature."
    Aunt said, "He shouldn't need you to tell him this at his age," and turnedto difficult child 3 and told him it was his own fault for not doing what his father said.
    Fortunately difficult child 3 is sufficiently socially capable, to not react to this. husband knew what I meant, there was no need for me to argue with anybody because if I had tried to explain, it would have looked like me trying to blame husband when I also should have remembered to warn difficult child 3 that it was expected to be 11 C in the Highlands (plus windy and wet) and not the sunny 25 C we had been used to.

    THis is the sort of ambifuity you will have to learn to battle. Family and familair adults do learn to avoid ambiguity and support the child. Less familiar people wandering through your lives will get it wrong and you will be left to pivk up the pieces.

    As the child gets older he will adapt to handle more and more challenges. Each exposure (like ours the other day) is a possible teaching tool - I can remind difficult child 3 to himself check the weather forecast, or ask us specifically about the forecast, in order to take some personal responsibilty for his own comfort and safety.

    I can't give you anything more exact, because your child is your child and not mine. You know him best. He knows himself best of all. Work with him as a team to help him learn to adapt to normal society. He will always feel he is different, but different is not always a bad thing. My boys kow they are different but value the qualities autism has given them. The ability to concentrate in fine detail for much longer and deeper than other people - they love this capability, it helps them excel at what they are interested in. They love the people who love them. They may be a bit hamfited about showing it, however!

  16. tictoc

    tictoc New Member

    Just wanted to second the opinion that even if your son doesn't get a spectrum diagnosis, some AS interventions might be helpful. My son spent the summer going to a social skills program designed primarily for kids on the spectrum and receives therapy through a similar program at school. It has made a huge difference in his ability to interact with other kids. He actually has friends this year.

    I'm also a big fan of the 1:1 aide, if you can get one. That takes the pressure off the teacher to provide the early warning for transitions and for helping your child maintain control in the classroom.

    Good luck.
  17. TerryJ2

    TerryJ2 Well-Known Member

    Do not use sarcasm or allow sarcasm to be used around him, until you feel he is sufficiently socially capable to understand it.

    This was a big one for me. I come from a sarcastic family. Now, my son is better at sarcasm than I am. ;) But we had some rough times when we miscommunicated and he felt he couldn't do anything right. On top of it, he didn't believe me when I said something at face value. Sigh.
  18. rachelfran

    rachelfran New Member

    I'm pretty sure in this economy it would be difficult to get any more therapies in school... This may change if we get a specific diagnosis but I wonder if the NYC DOE would let him stay in a mainstream class if he get a diagnosis on the spectrum? Does anyone have any experience with that?

    Much of what I've read rings true here and we've been dancing around an autism diagnosis for years ... but every professional so far has decided that we've fallen short of that ... Instead we have treated various things as we've gone along ... Social skills is definitely his worst issue and social skills programs and camps seem to be priced out of our range.
  19. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    He can get a 1:1 aide. Frankly, I found my son learned more, both socially and academically, in a small class and I wanted him there. He's mainstreamed now, but he's 16. We just got his midterm grades and nothing is below a B. He has a few friends too. But he basically learned how to make friends in his small class. He was actually in the small class half the day and mainstreamed with an aide the rest of the day. His interventions/social skills/help for speech and his Occupational Therapist (OT) were all free through the district both in Illiniois and WI. Shouldn't cost you anything.

    They kept telling us our son fell short too. It was baloney. He had it. We had to fight hard to get the label to get t he help. The older he got, the more "different" he seemed to be. It's hard to get the diagnosis. often with young kids, but the earlier you get help, the better the kids do in the long run.

    You are right that without a diagnosis. there wiill be no help which can lead to the child being seen as "bad" and you as wrongly being seen as a "bad parent." Even with one, you have to fight, especially if the child is bright, but you can do it. We did.

    Baby steps. :tongue: