Ok, I just have to ask your opinion on this strategy

Discussion in 'General Parenting' started by whatamess, Nov 25, 2009.

  1. whatamess

    whatamess New Member

    In a previous post I mentioned that my son (who is on the spectrum) makes strange noises... a lot. He does this at school, loudly, in class, in the libraray, pretty much everywhere. Mostly they are yelps, but can be other vocalizations. I think he meets criteria (I can't remember if our neurologist documented the other tics he has) for Tourette's/tics. Anyway, recently an educator decided to see how aware difficult child is of his noises. She decided to make noises while they were playing a game. difficult child noticed (his hearing is fine, why wouldn't he notice) and laughed. She did it again and he noticed again. Later she asked him if he noticed the noises she was making. He said yes. She asked if he thought that was weird. He said yes. And she said 'well, it's kind of weird when you make those noises too.' On one hand I see what she's trying to do, but on the other I'm offended for a multitude of reasons 1) what if he thinks it's ok to point out the noises other disabled kids make and call them weird 2) we try to remind him to be respectful in his requests and interactions and I think it's inappropriate for a teacher to use the word 'weird' instead of just politely pointing it out or asking him to stop 3)what if this really is out of his control and now he knows his teacher thinks these uncontrollable vocalizations are weird.
    So, I brought this up to a few people and spoke to the teacher eventually. I know they all think I'm being way too picky about it, but we've had bad past experiences that I don't want to repeat. There is a plan being readied for implementation that involves role-playing between two teachers that difficult child will watch. One thing difficult child does is use one word utterances to demand something. The strategy for the role-playing was to have one teacher 'play' difficult child and demand something in the manner he typically does and then point out why that's rude/inappropriate and a better way to do it. On the surface this seems ok, but for some reason I feel this is demeaning to difficult child. I'm having a hard time articulating why I feel this way. What do you think of this strategy to make difficult child more aware of his social mis-steps?
  2. ML

    ML Guest

    My 11 year old son also has tics. He does the throat clearing thing all the time and yes, it does get annoying. But anyone who has done even a little bit or research will know that they can't help it and if they are made to control them, they get worse. Your instincts are right on the money. Go to any website that talks about tics and print out the page to show the teacher.

    My thoughts are with you. This is a hard age for our kids and they need support. I'm sure the teacher meant well but it was ignorant and could definitely do more harm than good in this situation.


    Lasted edited by : Nov 25, 2009
  3. Marguerite

    Marguerite Active Member

    I wouldn't worry too much about the teacher using the word "weird" to descibe the noises. They ARE weird. If the teacher doesn't use the word, you can be sure classmates already have, often.

    Our kids can be very different and while we teach them to accept teir differences, we also need to teach them just how different they can be, to give them the choice to modify their behaviour, if they can, to blend in better.

    My boys also have made noises - I found that over time, the noises they made would change to something less obvious. I talked to difficult child 1 about it, he said he couldn't stop making the oise once he had started it, but he could change to a different noise. In some cases it was a noise he had heard which he tried to imitate (such as the call of a male emu calling the chicks, it's a sort of booming noise in the throat, like a backwards gulp). But once he had managed to make the noise to his satisfaction he found it permanently lodged in his repertoire.

    If your son has Tourette's, he will have a lot less voluntary control. If he has autism in some form, there is some voluntary control but the noises actuallyseem to soothe them, to hep them stay in control or callmer. The more stressed they are, the more they make the noises. Someties they won't notice their own noises but will if you draw their attention to them. They can't always stop, and if you try to force them to stop, often another noise or tic will take its place.

    As they get older and more socially aware (which seems to me to be wha tthe teacher is trying to do) they learn to think about the effect they have on other kids, and try to moderate their own tics. If they can.

    I think the teacher did a good thing.

    I do like the idea of the role-pplay, as long as the person 'playing' difficult child doesn't do it in a way to make that kid look too 'bad' or 'wrong'.

    Normality is a spectrum and our kids are on it. Often they're way up one end or the other of the spectrum, but they can slide further towards the middle. They are not bad kids.

    I would ask, if you're still concerned, if you can observe either a rehearsal, or a script, or while they're teaching your son. Discuss it with them, but as long as your son isn't being depicted in a demeaning way, I don't see a problem. If they use humour then that is good too. But don't satirise him, do it lovingly. After all, a lot of parents do this and also do it with satire, exaggerating the undesirable behaviour and making it look awful. I hated it when my mother did that (or my sisters). But if you're trying to demonstrate the difference between a hungry kid pointing to his mouth and saying "Aah!" to indicate hunger, and having the other person say, "Do you have a toothache? No? Is your tongue itchy? Do you have a sore throat? I just can't work out what is wrong! I think we have to take you to the doctor, he will work it out..." then it should work, especially if you next have the person demonstrating difficult child say politely, "I'm hungry. Is there anything to eat please?" and having the other person respond with, "You asked tht so nicely! Come on, let's see what food we have, I am so glad you can tell me what you want because I can offer you choice. I have meatballs, I have chicken, or I have fruit. Which would you like?"

    We used a lot of social stories, but again, they need to be the right kind. Again, as above - nothing judgmental, mrely demonstating what works and helping the child to rehearse the good methods.

    I think you need to sit down and think hard - why do I feel so bad about this? What is bothering me about it? Am I being oversensitive about them telling me child he isn't perfect? Or is there something I'm picking up at a gut level that needs my attention?

  4. ML

    ML Guest

    After reading Marg's reply I guess I have more to learn about tics. I had understood they couldn't control them but perhaps it is I who needs to do more research. My apologies.
  5. whatamess

    whatamess New Member

    I have to say I'm feeling very conflicted about alot of things to do with difficult child. He is turning 12 this week. Nine years since his diagnosis. We have tried so many therapies, so many strategies and many behaviors remain. At some point I either have to say this is part of who he is and accept it, or say the methods we tried didn't work but there might be other methods that do work and we should keep searching until he's 'fixed'. With these role-playing ideas, I just feel like saying *hello! we've been working on this for years! Don't you think we've pointed out his noises, etc?!! Like all of a sudden this new person is going to say, 'wow' you make weird noises and difficult child will be like 'really, ok, thanks for pointing that out, I'll stop now'*. I am also struggling because we just had an IEP and there are a ton of goals, which I'm happy about, but the teacher started talking about switching gears from trying to keep difficult child up with the curriculum (he's 3 years behind in math and reading, and can't spell or write beyond what a kindergartner can) to more functional skills. It is very hard to hear someone tell you to give up pushing forward with the regular curriculum and work on functionality. He's just turning 12, I feel like if I don't have expectations for him then no one will and it just seems so young to say- you won't go to college, but we can train you to do some (menial) work. It's so depressing, that's not what I want to envision for my son!
  6. ML

    ML Guest

    You know what, as long as you keep doing what you are doing he's moving in the right direction. So maybe he'll go to college at 20 or 21 instead of 18. Just because it may take our kids a little longer doesn't mean they won't make the finish line. And if he winds up doing "menial" work, who cares as long as he is happy.

    One thing I have to work hard at is staying in the moment. In 4th grade I started worrying about middle school and someone pointed out to me that it was still 3 years away. If I project too much onto an uncertain future I work myself up into full blown panic. Try to enjoy your son *today* and focus on developing his strengths. What are his natural gifts? Encourage him to follow his talent and know you aren't alone. Many of us share these same parental concerns. There is a mourning process that seems to resurface just when I think I've reached acceptance. One day at a time. Love and hugs from another mom who gets it. ML
  7. emotionallybankrupt

    emotionallybankrupt New Member

    It's such a struggle to have to "revise" those dreams we had for our children. I've had to work on this in very different ways with both my children, in their very different challenges. Anniversary reactions can also pack a punch for me, and I wonder if that's part of what you're dealing with. IEP meetings can be very intimidating, and that is a fact that took me quite by surprise. I am a seasoned teacher, but when on the other side of the table as a parent (regarding my younger child), I was taken aback to realize the emotional response I was having in some of those meetings. It is SO RIGHT for you to have what you believe to be appropriate expectations for your child. You know your child best and should not allow anybody to sell him short! YES, he is way too young for anybody to assume limits on his potential!

    Now, to put on my "teacher" hat, I can say that as a teacher, I've circled around different methods and strategies with children, and just because something didn't work early on doesn't necessarily mean it won't work later. Sometimes a child just isn't developmentally ready for a specific method. Searching for new methods is great, but tossing aside methods already tried, never trying them again, isn't necessarily good.

    As for the incident you described in your first post, I'd look at the overall relationship between your child and the teacher. Were his feelings hurt? If so, the teacher needs to know that and have the chance to address it. It's sure happened to me over the years, that I've unintentionally hurt a child's feelings. When I've known about it, though, I've usually been able to make amends and end up with the child and me both having a better understanding of each other, and a better working relationship with each other.

    One specific I noticed in your description of the exchange between the teacher and difficult child, is that difficult child LAUGHED. I think this could be an important teachable opportunity. Often, people laugh when the unexpected happens. I'm sure people who don't know your difficult child will at times laugh at his noises. The exchange he had with his teacher could help him understand that they did not necessarily intend to hurt his feelings, but that they were surprised. This is a very common dynamic in classrooms in general. Very kind students can be surprised by a situation and laugh out loud in a classroom, never intending to hurt anybody's feelings, but nevertheless, that is the result.

    I hope things get better soon and that you and the teachers can have a teamwork relationship you can feel good about.
  8. TerryJ2

    TerryJ2 Well-Known Member

    I've read that when Tourette's people are older, they can learn to control their tics, often with-the help of medications. I don't know if that would work for a 12-yr-old, though.
    What the teacher did with-the noises sounds like what I do with-my difficult child! The problem is, it's an ongoing thing, and she'll have to remind him several time a day or several times a week. At this point, it's just a learning process for him, and I don't know how controlled he can be. It's a LOT of hard work.
    In regard to the role playing, I wonder why they are using two teachers, instead of reversing the role playing. Our therapist pretends he's a kid and has difficult child be the therapist. Kids LOVE things like that. They think it's fun and funny. Then the therapist says, "So, what do you think you should do in your situation, now that we've done this?"
    Do the teachers follow through like that? I'm thinking that may be more of a therapist thing instead of a teacher thing, but then, if they're trained in Special Education, maybe that's the "in" thing.
    I agree with-emotionallybankrupt, that this should be a team effort. There is a disconnect between you and the teachers and you need to work together on this. After reading all these notes, maybe it will help you put your finger on what exactly bothers you about it and what might be benefitted from it, and you can meet with-them and come up with-constructive ideas.
  9. Marguerite

    Marguerite Active Member

    I may not have been sufficiently clear about tics.

    As I understand it, kids with Tourette's have a slightly different problem with tics, although to the casual observer it canbe difficult to tell the problems apart, depending on how the tics are manifesting. And especially with younger kids.

    I don't know Tourette's as well, not from personal experience, but because of the often-expressed concerns about difficult child 1 & difficult child 3 and possible Tourette's, I have looked it up.

    There are some similarities in terms of the difficulty they have in trying to control tics. With Tourette's it's a form of compulsion, and often the more pressure there is to avoid the tics, the more difficult it is for them to not make the noise. The compulsion can be overwhelming. The tic can be a noise, it can be a facial twitch, it can be a gesture or some other physical movement.

    With Pervasive Developmental Disorder (PDD), often they are totally unaware they are making the noise. Watch to see under what circumstances they make the noise (or whatever it is they're doing). Or if they are aware, they aren't always aware of how much they do it.

    With both disorders, the more anxiety there is, the worse the tics will generally be. If you try to force them to stop the tics, you can make the problem worse because the anxiety is heightened. Think of that scene in Blues Bros when Elwood & Jake are meeting with the Penguin (the Mother Superior of the orphanage). Jake swears, the Penguin hits him with the ruler and he swears because she's hit him. Elwood tries to stop Jake swearing (and swears himself in the process) and the whole thing escalates until the ruler is swishing back and forth with a blur, hitting them, and they're swearing constantly in response.

    If you try to use force or strictness to control tics, this is what is most likely to happen.

    We can try all sorts of things to help a child overcome the sort of noises they make. With Pervasive Developmental Disorder (PDD) (which I know more about, from experience) the tic is actually more of a stimulant (self-srimulatory behaviour). It's something they do to help themselves feel calmer. It becomes a habit, the more ingrained a habit then the harder it is for them to change it. The more you pressure them to stop it, the worse they're likely to get with it. It can almost seem like defiance, but it's not.

    With Tourette's, the noises can often get louder and more insistent, the more you try to stop them. But with Pervasive Developmental Disorder (PDD), the kid does seem to have a little more control over osme aspects of it. They will try to modify it especially if they are more aware of it. But the younger they are, the less able they are to first be aware before they make the noise, and second to be able to make the change. When they are more able to change it depends on the individual child and how capable they are, as well as how severe the Pervasive Developmental Disorder (PDD) is.

    difficult child 3 was probably stimming from birth - he was fascinated with watching the flicker of light through the leaves on the trees, which I now realise was probably very similar to the way some autistic kids will flap their hands in front of their face and watch the gaps between their figers as they do so - it produces a flicker effect which has been described as soothing to the brain, almost like scratching an itch. difficult child 3 never hand-flapped, but another boy we met at age 6 was a hand-flapper. That boy was more high-functioning than difficult child 3 but I noticed that when that boy was especially happy (such as playing in the water at the beach) he began to flap his hands. His parents made no attempt to stop it - there really was no reason. And at age 6, it would have been fairly pointless anyway.The boy would have developed something else to take its place.

    And that is pretty much what tends to happen - difficult child 1 at age 6 used to make what we called his World War III noises. It was as if he was doing the sound effects for a Battle of Britain dogfight. And it was constant - we have a videotape of a holiday we took, and all through the video you can hear me complaining to difficult child 1 about the noises he was making. On the tape you can't hear difficult child 1's noises, only me. Ironic.

    difficult child 1's "war sound effects" later gave way to quieter sounds and finally that last one which evolved from his attempts to reproduce the emu call. It's a much quieter sound but it got very annoying for a while. He would have been 20 years old at the time, well aware that the noise was annoying but unable to fully control it. He was also aware that it had begun from a habit, but had now become something more.

    difficult child 1 no longer lives at home so I'm not so aware of noises he makes. But difficult child 3 has his own noises, the one he's had longest is a quiet growl in the back of the throat, like a constant throat clearing crossed with a groan. If you read Mark Haddon's "The Curious Incident of the Dog in the Night-Time" (a fiction book told from the point of view of a teenage boy with Asperger's) the main character describes a noise he makes as 'groaning". He also descripes a yapping sound he makes when especially upset and stressed. He does seem to have some voluntary control over these, but only some.

    difficult child 3 has also had a nose twitch in past years. His good friend (also high-functiioning autistic) has had a similar facial twitch (much to his mother's distress).

    Other facets of the autism can come into play - the Obsessive Compulsive Disorder (OCD), for example. A behaviour can become repetitive if the person developes a sort of ritual aorund it. For example, difficult child 1 when anxious and ready to go out will walk around the house checking all windows and doors are locked, making sure he has his wallet and his keys and all power points are switched off. He will go around over and over, until it's time to leave. And as he drives away his mind will be asking him, "Did I shut everyting off? Are all windows/doors locked? Do I have my wallet and keys?" The act of checking his pockets for wallet and keys can become a repetitive gesture which can turn into a stimulant - because feeling for his keys in his pocket and finding them there, reassures him and makes him feel safer and more in control.

    It is such an individual thing...

    We have been congratulated for raising our boys to feel good about themselves and to not view their autism as a handicap that diminishes them in any way. Autism is simply a facet of who they are and how they function. Autism is simply a different way of brain wiring, not necessarily defective. There are advantages to autism just as there can be problems. The problems of autism are those where society and the individual don't mesh well (for whatever reason) and often there are ways to get around this. There are also many career paths where these problems are not problems at all.


    1) difficult child 1, after a number of years trying this or that, has finally decided he wants to be a cabinet-maker. HE has a good brain but really likes making things and especially lieks working with wood. He likes the feel of wood under his hands, he likes the smoothness of a well-polished surface. Here, it's the Obsessive Compulsive Disorder (OCD) and the stimming that is being catered to. The Obsessive Compulsive Disorder (OCD) component of the autism helps difficult child 1 do the repetitive tasks and the perfectionism that produces a top quality finish to the sanding and polishing he does. The stimming means he needs to feel a smooth, blemish-free surface when he runs his fingers along it. HE regularly runs his fingers across many surfaces, and if a surface is not smooth and he feels it should be, it worries him until he takes action. As a result at his last job, they put him in charge of sanding all the furniture, he was even supervising more senior staff in this area. So in this case - the autism and stimming is an asset in the workplace.

    2) difficult child 3 is obsessed with computers and computer games. There are many aspects to computers and technology that he loves. He likes watching TV home viewer film clips for example, and uses the computer to recordd these TV shows. He then uses computer software to extract the segments he especially likes and turn them into small film clips which he has worked out how to download to his (ancient) Nintendo DS. He plays these clips to his friends or often just watches them himself over and over.
    It takes a lot of technological skill to do what he has been doing. His capability is rising exponentially and we can see a number of good career paths for him in technology.

    What we're doing with difficult child 3 - there are a number of things he especially loves - film, photography, the technology to hook it all together, computer games, computer trouble-shooting, programming. We found a course we can enrol him in next year, a part-time course which he can do at the same time that he completes his high school studies via our form of home schooling. By the time he has finished all his high school and got his final school graduation qualifications, he could already be halfway to a university degree.

    You don't have to give up your dreams for your child. Not at all. But you may have to consider modifying them. difficult child 1, for example - he's really bright, we had hoped we could get him far enough aong the track into a university Science course. For a while it looked like the best place for him, career-wise, would be working in a museum curator department. The organisation, the cataloguing, the meticulous detail - it all fits. difficult child 3 said, in the TV interview, about one of the advantages of having autism, "When you look at two objects that are 99% identical, you have toruble telling them apart. But I zoom in on that 1% difference and can see all the details."
    For someone like that, a job that values the ability to recognise that sort of detail is where you want to push your autistic child. Even a hobby - stamp collecting, for example. Or perhaps specialising in recognising counterfeit currency.

    What you need Occupational Therapist (OT) do is observe your child, see what he is interested in, support his interests, show you value him as he is but still help him lern to adapt his behaviour to be more successful at blending in where he can.

    You don't let him do exactly what he wants without challenge, but neither should you constantly try to mould him into what you feel he should be, some sort of mimic of normality. Because the best he will ever do, is mimic normality. They can get very good at it, but need to have it acknowledged that they are different and that's OK. They need to love themselves as they are and not feel angry or cheated because they are different. But they do need to find ways of not annoying other people too much, when they have to!

    If your child can grow to be an adult who holds down a job he enjoys and is good at, who perhaps learns to not annoy people with noises at work, then he also needs to know it will be OK for him to come home from work to a home environment where he can deal with the stresses of his day in a more relaxed manner, knowing that at home he can make noises if he wants because at home he is understood.

    Routine helps. Unconditional love helps a lot. Humour is wonderful.

    You have tried, but he was younger. You already know how difficult it is to help him change, especially if he's not ready. He may still be not rady, but it is possible that what the teachers have planned, could work. If it does - great! A combination of factors would be why, if it works. But if it doesn't work - also great, because it vindicates you. And who knows? At some stage his brain will be mature enough and he may remember enough of this to help him make the changes more readily.

    As long as the teachers do it with love, without judgement and with just enough pressure to keep him thinking.

    Keep making your own notes on how he's going, these notes are so valuable when you look back over them. And sometimes they can help you find some answers to problems oyu may not have realised you had.

  10. TerriH

    TerriH New Member

    HAve you already tried role playing to teach him what he SHOULD do?

    Of course, they do not necessarily do what they know that they should: my own son (with aspergers) is just STARTING to not ignore people who say Hi to him, and he is 15!
  11. tictoc

    tictoc New Member

    My 7 yo son has Tourette Syndrome...At this age, our strategy with tics is to just ignore them. Some of his tics can be painful, so I check in periodically to see how he is doing and if I can help him with the pain. But, in general, we ignore them. Thus far, his vocalizations are not too obtrusive (esp now that he is on medications), but as he gets older it will probably get worse. Again, at that point, we probably will ignore them. There is a type of therapy called Comprehensive Behavioral Intervention for Tics (CBIT) that is fairly new and that uses the strategy of teaching people with Tourette's Syndrome to channel the tic impulse towards something else. For example, if the impulse is to make a cheshire cat grin, it might be redirected to purse the lips or something else that satifies the 'urge.'

    If your son has Tourette's Syndrome, he truly cannot control these noises and asking him to will only make it worse. A qualified CBIT therapist might be able to help him redirect the impulse, but teachers should not attempt this.

    Since the noises are causing problems at school, it seems imperative to try to sort out the cause. Are they tics, self-soothing, or could it be Obsessive Compulsive Disorder (OCD)? Sometimes kids can't tell the difference between a tic and a compulsion (Obsessive Compulsive Disorder (OCD)), but often a cognitive behavioral therapist can help sort this out. My son is too young to have benefited from this, but we know older kids with Tourette's Syndrome and Obsessive Compulsive Disorder (OCD) who have benefited enormously from cognitive behavioral therapy, ie things that first appeared to be tics turned out to be compulsions that were helped with therapy.

    If it turns out they are tics, would you consider medication? My son takes clonidine in patch form and we have seen a massive reduction in tics with it (probably 80%, which is considered very, very good). It is an anti-hypertensive that is one of the milder tic reducers available (so is Tenex, which lots of Tourette's Syndrome kids use).

    As for the social skills (eg, one word requests), this seems like a totally different issue and one that school personnel might be qualified to address. Does your son participate in a social skills therapy group at school? If not, is one available? We have found this approach to be very helpful for our son. He is matched with one other child who has similar issues (and who he gets along with well and is motivated to do well with) and they have to role play situations, they play board games to practice manners, and the teacher goes over "social stories" with them to reinforce expected behaviors. If you are interested in the curriculum they use, PM me and I'll direct you to the center that developed it (We went directly to that center for therapy this summer and it was amazing.).

    Good luck.
  12. whatamess

    whatamess New Member

    My difficult child is totally burned out on therapy. He will not participate in social stories or the role-playing (that is why the teachers were going to be the role-players and keep difficult child as an observer). It is an enormous struggle to get him to even talk about his behaviors, let alone have him actively try to curtail them. He just won't have any part of it.
  13. susiestar

    susiestar Roll With It

    I have not read all the responses. I do think that tics are tough to understand. I would not like a teacher who did what your teacher did - I would be FURIOUS if this was done around any other children as it would leave my kids feeling humiliated.

    As for the teachers role-playing, are they doing this with every kid who does something strange? I guarantee that your son is NOT the only child who has problems. Why are they singling out your son for these little scenes?

    Until more is known about WHY the tics happen I would NOT give permission for anything of the sort that they want to do. Not until I knew what we were working with and what methods the therapists can suggest to help.

    Their little acting out sessions just seem like they have too much room to be singling difficult child out when he cannot be the only inappropriate at times student.
  14. whatamess

    whatamess New Member

    Susiestar, the role-playing would be in a separate room, not the main classroom. Two educators, my difficult child and possibly one other student. I know I sound so negative when I talk to staff about my apprehension with these strategies, but I think they just don't realize how long we have been at this and after nine years you kind of get pessimistic. It's hard to think how these strategies will have an effect if difficult child is non-participatory.
  15. tictoc

    tictoc New Member

    I think, in the end, you should say 'no' if you are uncomfortable with the approach. If something just doesn't feel right to you, then don't let them do it. I am always on the side of, "The parent knows best." You have been doing this with your son for far longer than anyone at his school. You can always think about it and change your mind later.