Attention Deficit Disorder

How can i deal with the rages

Question:

- Hide quoted text — Show quoted text -MomN82R wrote: > TSNW wrote: > >.. And another thing, my husband took the day off > >yesterday to go to the Dr’s app’t, and it fries me that we were treated > >so differently just because he came along … the Dr., who never makes > >anything clear, was with us until 7 pm, patiently explaining everything > >to The Man of the House, while the Little Woman, who has read everything > >there is to read about Lyme can’t get questions answered on the level at > >which I understand Lyme issues … grrrrrrrrrrr. > Snicker, shrug, in a commiserating sort of way.  Figures.  Maybe they thought > that *now* you were _serious_.  Big grrrrr. > During the detailed, patient, explaination – did *you* learn anything new??  Or > was it just the docs explaining to him what you’ve already explained?

I didn’t learn anything … he was explaining stuff on a simple level to my husband that I already know of in greater detail, including the pros, the cons, the controversy, the side effects, and so on.  I was starving (having been in the car for hours, not leaving there until after 7) and tired after two nights of no sleep, and my son fell asleep on the examining table while they had their male bonding session (at least he got some sleep, after two nauseous hours in the car). I left there saying to my husband that he never explains things sufficiently on my level, and he had only changed all the medications because of my protest that what we’re doing is NOT working and we need to try something new, while my husband left there saying to me that the man was a genius.  Elephant – trunk – tail. ????? — Tourette Syndrome – Now What? http://members.home.net/tourettenowwhat "Dr Laura" Schlessinger on Tourette’s http://members.home.net/tourettenowwhat/DrLauraTS.htm

Response:

- Hide quoted text — Show quoted text ->From: "inventing" strac…@email.msn.com >"Tourette Email" <touretteem…@cs.com> wrote in message >news:20010629005931.02542.00001302@ng-mj1.news.cs.com… >OK, I agree with everything you say up to here.  (By the way I commented on >amother posting of yours before I read this one.  Nothing gets posted in the >order we write does it?) >> I do not beleive the child was being manipulative because most of our >children >> do not possess the level of executive functioning skills required to >> manipulate. >To clarify:  When you say "most" are you referring to most TS kids?  Or most >multiple dx kids, with TS/OCD/ADHD etc? >And I am still concerned that "most" does not give an accurate description >to the parents who are reading this.  Honest, I am not trying to be picky >over unimportant things but this "most" business is bugging me. >I also have a daughter who raged, and who has TS/OCD/ADHD/LD.  We’ve been in >counseling, read the literature, read a lot of the research.  Everything has >pointed to the raging being connected to ADD/ADHD, even possibly to the OCD >but not to the TS.  This info confirmed by her counselor who saw her in high >school.  (Everyone remember the football player up against the lockers >incident?) I guess that is the point I am trying to make. >And I am concerned about the word "most" when you refer to manipulation and >the level of executive functioning skills.  By my reading, I don’t see this >as a "most" situation reguarding TS.  Perhaps associated with some of the >other disorders.  Certainly have never seen a lack of manipulation skills in >my daughter! <VBG> >> Executive function is like the manager of the brain.  It is the ability to >plan >> a course of action, carry out that plan, and then check to see if it >worked or >> not. >> Most of our kids are not capable of that level of cognitive processing. >More >> likely they do this: >>                               READY —  Fire  –  AIM >> I wish I could remember the name of the guy I’m quoting from. >I do,too.  I wonder what age group he was talking about.  And under what >conditions.  How old is your child?  My understanding and observation is >that as our TS kiddos mature, and become more self aware, they certainly >seem to gain that level of processing IF they ever had problems with it >before. >I think over the huge numbers of adults with TS, and my husband, who visit >this site.  Problems with cognitive processing do not seem a factor, except >in times of stress, which is also normal, I believe, in the general >population. >> I am not saying you are wrong, just that I see it from another >perspective. >Guess I could use this closing line, also.  I’m not saying you are wrong. >I’d just like to know your sources for this information since it is sooo the >opposite of what I understand from my resources.  Though I haven’t mentioned >them, I’d have to include my daughter’s neurologist in the info mix also. >> Patti >> http://ourworld.cs.com/touretteemail/

I am Patti, my original post was from my other screen name Tourette Email which I use for my web site.  Today I am posting from my PMbeers3 screen name.   Dear  stracman, I’m sorry, I thought I was being clear that when I used terms like ‘most’ in my post. (Excuse me while I get stuck on that rhyme.  lol  :-).) that I was refferring to children with multiple complex dxes of not just TS but also a long list of aphabet soup wich would also include but not be limited to disorders like ADHD, OCD, rage, Asperger’s, bipolar and so much more.   I thought I had made that clear.   I got the sense that I was being nit picked.  There is a "politically correct" segment of the TS population which would like to distance itself from yucckier issues like rage.   I’ll help you out and make it clear that kids who have a single dx of TS only and no other dx RARELY rage.  TS is just tics and nothing more.  TS does not cause rage.  Unfortunatly my experince has forced me to deal with the ugly fact that SOME kids with TS DO rage.  .   And as to my sources of information on the subject of rage I thought I also made that clear.  I have spoken with numerous parents of children who rage on the internet.  There are some common factors among kids who have TS and also rage.   I have also read every single peice of literature on rage I could find.  And that is a Very limited collection which includes the TSA brocure, Ross Greene’s The Explosive Child, and Rose Wood’s Dysinhibition Syndrome.   Unfortuantly very little research has been done on this subject.   Over two and a half years ago I started an email group for parents of TSplus kids.  This group has expanded into many groups.  My email groups attract mostly parents of kids who have multiple complex issues and not just tics. Hundreds of people have subscribed to these groups.  I have had countless dioluges with these parnets.  Over the years I hear many similar stories. So when I use a word like ‘most’ to describe kids who rage I am using my Eperince as my source.   My son is 13 years old and has the emotional maturity of an 8 or 9 year old. Many kids with complex dxes also have an emotional maturity which is 2/3 of their cronilogical age.  The source of this information is the reports of hundreds of parents of kids with TS+++.   Emotional maturity alone is not what got my son better.  It certainly is a contributing factor.   The fact that what I say does not agree with what you have read does not make me wrong or make you wrong.  You and I can both be looking at the same elephant and you see the ears while I see the trunk.  Still we see the same elephant.   Patti TS email groups for everyone: http://ourworld.cs.com/TouretteEmail/

Response:

… the Dr., who never makes > anything clear, was with us until 7 pm, patiently explaining everything > to The Man of the House, while the Little Woman, who has read everything > there is to read about Lyme can’t get questions answered

I just dumped my primary care MD for similar reasons, TSNW….he was great as long as I didn’t ask questions all those years. The last couple of years, I started asking questions, challenging some of his answers. And then, with Al’s situation blowing the doors off ‘conventional wisdom,’ and my own search for some mysterious issues of my own (according to naturopathic medicine, underactive thyroid…..), well, last week was the last straw. I have a body temperature of 97.2, and a basal temp of 96.6. As well as a host of other symptoms. Alternative medicine has tests to determine this, and treatments, that conventional medicine won’t even LOOK at. A simple blood test, for one, that goes beyond the ‘usual.’ Medications that a naturopathic physician cannot prescribe in this state. And my MD refuses to speak with my ND. Makes NO effort, although he asks me EVERY time I go into his office "What’s his  name again?".. My MD can’t get it out of his head that I had a severe clinical depression 17 years ago and keeps blaming EVERYTHING on ‘underlying depression.’ But when he said to me "We have this problem all the time. People ‘like you’ who read something in a book and then bring it to us telling us what’s wrong with them,’ yadda yadda yadda….’ Angry enough to spit, I looked at him and said, "Yeah, You’re damned right I’m getting depressed. AND angry because I can’t get you to LISTEN to me. I know what clinical depression is. It does NOT reduce one’s body temperature by one and one half degrees, cause aching joints and hypersensitivity to cold." And I left his office. For the last time. It’s never easy. But there are options. The hard part, and sometimes seemingly futile one, is finding someone who will listen to us. Compounded by the fact that this particular doctor is an older man, European by birth, and used to being listened to…and not questioned. Sorry, if that sounds like a prejudice. But we all know that SOME cultures simply do NOT believe women have much sense. Including some ‘cultures’ in this country. sigh….. KAT in CT…dealing with ‘rages’ of her own, at the moment…..

Response:

TSNW wrote: >.. And another thing, my husband took the day off >yesterday to go to the Dr’s app’t, and it fries me that we were treated >so differently just because he came along … the Dr., who never makes >anything clear, was with us until 7 pm, patiently explaining everything >to The Man of the House, while the Little Woman, who has read everything >there is to read about Lyme can’t get questions answered on the level at >which I understand Lyme issues … grrrrrrrrrrr.

Snicker, shrug, in a commiserating sort of way.  Figures.  Maybe they thought that *now* you were _serious_.  Big grrrrr. During the detailed, patient, explaination – did *you* learn anything new??  Or was it just the docs explaining to him what you’ve already explained?   >  I try to keep them all >on the same page and communicating with each other by sending summary >faxes, but they’re still on six different pages … >–

Very frustrating.  Does any one of them make any sense?? (((hugs)))) Barb

Response:

Treadin Water wrote: >> Although, at least, now there are qualified, appropriately trained, >pediatric >> diagnostitians, there certainly aren’t enough of them and finding them is >not an >> easy thing (snip).

PatW responded: – Hide quoted text — Show quoted text ->I couldn’t agree with you more, TreadinWater.  And though our son does not >have the complication Bi-polar brings, he certainly does have his own >interplay of variables that challenge him on a daily basis.  It has been a >struggle to find a team of professionals to work with us, to support and >enrich the collective strengths, determination, and resilience he possesses; >and to be available with their knowledge, understanding, compassion, >dedication, and support during the most difficult of times.  These are >individuals who share my philosophy  that no matter how difficult things may >appear on any given day one never gives up.  And because of this shared >philosophy, we can work together to critically assess the effectiveness of >the interventions and supports — the research findings across many >disciplines, the cognitive and behavioral strategies; the medications; and >the environmental opportunities, triggers, and barriers.  The challenges are >there, but so are the rewards –for my son, for me and my husband, and for >the qualified, appropriately trained individuals working with us. >Pat W

Pat, Accolades to you for your determination and success in assembling such a team of professionals.  I particularly admire the fact that they recognise your and your husband as valid team members, vital to the success of treatment.  I have, too often, felt that I was merely an adjunct in my son’s treatment – ie, translator, taxi, and bill payer, and someone to work around instead of with. Sigh. Perhaps at some point, when you have the time, you can describe some of your struggles, and give us some tips on how to forge those very important relationships.   TIA, and thanks for posting.  I find your writing awsome, though I (regretfully) don’t often respond.  Perhaps it’s my reluctance to simply "me too" a post, because generally, when I finish reading what you write, I simply say "wow". Barb

Response:

MomN82R wrote: > Pat, > Accolades to you for your determination and success in assembling such a team > of professionals.  I particularly admire the fact that they recognise your and > your husband as valid team members, vital to the success of treatment.  I have, > too often, felt that I was merely an adjunct in my son’s treatment – ie, > translator, taxi, and bill payer, and someone to work around instead of with. > Sigh. > Perhaps at some point, when you have the time, you can describe some of your > struggles, and give us some tips on how to forge those very important > relationships.

What a great idea, Barb … I’d love to hear Pat’s professional/parent perspective on how to better manage the relationships with the clinicians and doctors who treat our children and how to get everyone working more effectively as a team … I’m juggling seven doctors/practitioners now for the Lyme (with six different opinions about the best treatment plan), and I feel like a <failing> case manager. I wish one of them would just be in charge (and it would be nice if one of them seemed to CARE about the amount of pain we’re coping with) … And another thing, my husband took the day off yesterday to go to the Dr’s app’t, and it fries me that we were treated so differently just because he came along … the Dr., who never makes anything clear, was with us until 7 pm, patiently explaining everything to The Man of the House, while the Little Woman, who has read everything there is to read about Lyme can’t get questions answered on the level at which I understand Lyme issues … grrrrrrrrrrr.  I try to keep them all on the same page and communicating with each other by sending summary faxes, but they’re still on six different pages … — Tourette Syndrome – Now What? http://members.home.net/tourettenowwhat "Dr Laura" Schlessinger on Tourette’s http://members.home.net/tourettenowwhat/DrLauraTS.htm

Response:

Leslie, My folks thought for years that my Sarah just needed a good swat on the behind. Luckily for me, my older son was VERY good so I realized early on that it wasn’t my parenting alone that was my daughter’s problems. When we would visit with my folks I took the stance that I knew what my daughter needed and I didn’t let my parent’s views change that. I stood up for my daughter, in a very nice way <g>! My folkjs really thought she was a spolied brat and I was coddling her. Well, as she got older and things got better they were a little more undertanding. But recently, after my father’s death my mother suffered from depression. In dealing with her I ‘expalined’ a lot about my daughter and for the first time my mother caught on. She also sees how Sarah is a lot like her and maybe her way of handeling it wasn’t the best. It was gratifying to me to finally have my mother’s understanding. Sarah is spending the summer at the Savannah College for Art and Design. My mother lives in Savannah. She now thinks Sarah is wonderful (just wait until Sarah brings home her frineds with blue hair, tounge pierces and army boots with fishnet stockings…). I’m glad I stuck up for my daughter, I love my parents, but my first loyality is to my daughter!! Jean

Response:

- Hide quoted text — Show quoted text -Pat Wilson wrote: > I couldn’t agree with you more, TreadinWater.  And though our son does not > have the complication Bi-polar brings, he certainly does have his own > interplay of variables that challenge him on a daily basis.  It has been a > struggle to find a team of professionals to work with us, to support and > enrich the collective strengths, determination, and resilience he possesses; > and to be available with their knowledge, understanding, compassion, > dedication, and support during the most difficult of times.  These are > individuals who share my philosophy  that no matter how difficult things may > appear on any given day one never gives up.  And because of this shared > philosophy, we can work together to critically assess the effectiveness of > the interventions and supports — the research findings across many > disciplines, the cognitive and behavioral strategies; the medications; and > the environmental opportunities, triggers, and barriers.  The challenges are > there, but so are the rewards –for my son, for me and my husband, and for > the qualified, appropriately trained individuals working with us. > Pat W

Pat, what a beautiful post, and a wonderful tribute to optimism, your son, your family, and the professionals you are blessed with. It made me green with envy … I wish I could find doctors who could just get a grip on the Lyme ( — Tourette Syndrome – Now What? http://members.home.net/tourettenowwhat "Dr Laura" Schlessinger on Tourette’s http://members.home.net/tourettenowwhat/DrLauraTS.htm

Response:

Raising Your Spirited Child by Mary Sheedy Kurcinka Jean "Leslie DeLong" <LeslieDeL…@alum.mit.edu> wrote in message

news:LeslieDeLong-2906011139320001@net161-91.med.yale.edu… .  I – Hide quoted text — Show quoted text -> LOVE to read, so book recommendations make me a happy camper.

Response:

Treading water: 2 things. 1) I agree with what you pointed out, when a child manipulates it is usually because that is the only way they know how to get what they need. They don’t do it to "get" us. and 2) actually, most self harm is not manipulation or trying to get attention, it is usually an act that relieves pain and mental pressure. It either refocus mental pain into real physical pain the person can then deal with; helps detach the numbing some people feel when in mental pain; and for some it actually releases endorphins so the person does get a real ‘relief’ feeling from it. It can be an addicting behavior. Just For Information!! Jean "TreadinWater" <TreadinWa…@aol.com> wrote in message

news:3B3C970E.A9B07FC7@aol.com… – Hide quoted text — Show quoted text -> I agree with you.  However, I would like to give you an example of what I > believe is an appropriate way for a *professional* to use the word > manipulation.  Our beloved pediatric psychologist had the following to say about > some speculating that threats at self-mutilation or hurting oneself are > "manipulative".  She said "I say that even if these threats are ‘manipulative’, > the child obviously needs help or they wouldn’t be saying such things". Now > THIS I can agree with.

Response:

Leslie DeLong wrote: > How much of your time goes into this?  

In the last four months, I have left the house very little, and have spent most of my time searching for answers online  … My son has been very ill, allegedly with Lyme, so here I sit … Again, today, as he is upstairs in a darkened room, on his second day of a debilitating migraine/cluster headache (they usually last a week) and four hours sleep in two days, not relieved by two morphine tablets or acupuncture, so I’m researching sodium metabisulfite allergy on the computer right now.   But I’ve got lots of links to good TS stuff <wince> … Tourette syndrome is the easy stuff — I take a break to do TS stuff when I need hope and optimism and "easier" (it’s all relative) answers ) I wish I had links and answers for Lyme … but ’tis not to be. One of the joys of life in CT. — Tourette Syndrome – Now What? http://members.home.net/tourettenowwhat "Dr Laura" Schlessinger on Tourette’s http://members.home.net/tourettenowwhat/DrLauraTS.htm

Response:

KATHRYN A TAUBERT wrote: > My sister would have been tossed into a mental institution, labeled > schizophrenic, and my parents blamed for ‘causing’ her problems.

That sums up what we all hope no longer happens to any child or parent. — Tourette Syndrome – Now What? http://members.home.net/tourettenowwhat "Dr Laura" Schlessinger on Tourette’s http://members.home.net/tourettenowwhat/DrLauraTS.htm

Response:

"TreadinWater" <TreadinWa…@aol.com> wrote in message

news:3B3C970E.A9B07FC7@aol.com… > Although, at least, now there are qualified, appropriately trained, pediatric > diagnostitians, there certainly aren’t enough of them and finding them is not an > easy thing (snip).

I couldn’t agree with you more, TreadinWater.  And though our son does not have the complication Bi-polar brings, he certainly does have his own interplay of variables that challenge him on a daily basis.  It has been a struggle to find a team of professionals to work with us, to support and enrich the collective strengths, determination, and resilience he possesses; and to be available with their knowledge, understanding, compassion, dedication, and support during the most difficult of times.  These are individuals who share my philosophy  that no matter how difficult things may appear on any given day one never gives up.  And because of this shared philosophy, we can work together to critically assess the effectiveness of the interventions and supports — the research findings across many disciplines, the cognitive and behavioral strategies; the medications; and the environmental opportunities, triggers, and barriers.  The challenges are there, but so are the rewards –for my son, for me and my husband, and for the qualified, appropriately trained individuals working with us. Pat W – Hide quoted text — Show quoted text -> > But I am also realistic about it. Had she had everything she needed > > medically as a child, young adult, older adult, things might have been > > somewhat different. Perhaps. No guarantee. Because the person with illness > > has to want to get better. And that is the rub. Some don’t. It’s easier > > being irresponsible. Having others take care of what you leave behind. And > > when you are so ’sick,’ it encourages others to provide all that you need to > > keep you right where you are. Out of love and compassion. And because there > > is no alternative. > And sadly, this is what I find chilling about the Papolos’ statements in their > Preface to their book. > Kat, I realize I am merely restating what you have said here.  I would just like > to offer that I do not think finding appropriate help is an easy task, even > today.   And judgment from anyone who hasn’t been there done that, only adds > stress in an already stressful situation. > I remain very defensive about inference and assumptions by anyone purporting > themselves as a medical proffesional and I certainly empathize with how > difficult it is as a mother to be reaching out for HELP and getting bombarded > with "must be the parenting" implications by those very proffesionals. > > So, parents out there, your emotional, visceral response to words like > > "manipulation" and "trauma" is understandable. I’ve seen it first hand. > > However, these words are part and parcel of life. Especially life for the > > seriously compromised. > I agree with you.  However, I would like to give you an example of what I > believe is an appropriate way for a *professional* to use the word > manipulation.  Our beloved pediatric psychologist had the following to say about > some speculating that threats at self-mutilation or hurting oneself are > "manipulative".  She said "I say that even if these threats are ‘manipulative’, > the child obviously needs help or they wouldn’t be saying such things". Now > THIS I can agree with. > As someone pointed out, Marietta’s *thing* is about language, and I guess my > *thing* would be finding help for our kids. > > The difference is that you have options. You have choices. You have > > treatments and your children have opportunities that my own parents and > > sister never had. > I am reiterating that this may not be as readily available as you might hope. > > Including this support group. For all its flaws, it does result in dialogue > > that results in learning. > > Including learning about ourselves, and just what sets us off. > > If something you read here does that to you…sets you off…then examine > > your own hearts and souls for precisely what it might be. > > None of us does it right all the time. We are, after all, humans, with > > flaws. > > But we can learn. And as importantly, we can believe that there just might > > be a ‘better way’ somewhere. > > In this day and age, there is. > > Fifty years ago, there wasn’t. > > My parents would have given their arms and legs to have the opportunity to > > speak with people here, like we do every day, in this manner. > > The way we do, and take for granted. > > KAT in CT > Kat – I realize I’m preaching to the choir with you.  The subject of my > daughter’s manic episode 3 years ago still brings me to tears and it was NOT > easy finding appropriate help for her. > However, if you met her now, I know you’d be delighted! > TreadinWater

Response:

Kat, I do know of what you are talking about. This disorder has become the butt of most therapist’s jokes, are often refused treatment and live with such unconceivable pain. Treatment is out there, but few clinicians know about it. Also, it does cause trauma within the family. I agree with you 100%, it is NOT the parent’s fault (you can tell this to your mother from one who has been there!) I was born the way I was, my sensitivity to environment, to my mood and emotions and my lack of skills caused me to live disfunctionally, which in turn caused more problems in my life. There are good things about this personality type, but the bad stuff just got in my way until I was able to learn the skills I needed. It was once believed that BPD was caused by trauma, usually sexual abuse in childhood. But them it used to be believed that autism was caused by cold mothers. Yes, a lot of BPDs WERE abused, but usually because a family with BPD abused them. Or their impulsive ways put them in harms way. You, KAT, are a very sensitive person as is your sister. Who knows why she perceived the world in an invalidating manner or just didn’t learn good coping skills. Her’s became a disorder, yours an asset. I hope she can find treatment, and your mother can find a way to let go of the guilt. Hugs, Jean "KATHRYN A TAUBERT" <KATAUB…@prodigy.net> wrote in message news:9hhs1d$amno$1@newssvr06-en0.news.prodigy.com… – Hide quoted text — Show quoted text -> > The implication that the child suffered trauma makes me uncomfortable > because > > of my own experince with my 13 year old son who has been rage free for six > > months. > > He raged for almost three years. > > I get defensive about stuff like this. > That’s understandable. > I do not have a child that does this. > But I do have a sister with multiple DXes (NOT including TS), who does, and > has, in one respect or another, for as long as I can remember. (She would > make most of your kids look like angels, frankly.) > I’ve studied her conditions for years, trying to make sense out of them. > And I’ve seen the suffering of my parents, who blamed themselves for > something they simply could not understand, nor was there help for them, in > the Diagnostic Dark Ages, for them to do so. (My sister is 61 years old.) > One thing I read not so long ago helped put it all into perspective: > I’m paraphrasing this. > Children with serious neurobiological disorders can become so traumatized by > living with them that, as they become adults, they may suffer something akin > to PTS, post traumatic stress disorder, simply from having had to deal with > the impact of their conditions upon themselves and those around them. > Especially those who did not receive the appropriate help early on. > Also, EACH child perceives his or her world differently than siblings. EACH > child is basically a new card in the deck, with the deck stacked different > against or for him, according to HIS or HER perceptions of it. > The ’same’ parenting style for each child doesn’t always work. No matter HOW > good it is, and how caring the parents are, children who are wired > differently, especially with ‘disordered’ conditions, will require different > parenting styles. > My parents never knew this. They never had the advantage of the Internet, > enlightened clinicians, medications, cutting-edge therapies, or even support > groups. They simply had to try to live with a difficult child who didn’t > respond to anything. And they had to assume ‘blame’ for that, sadly, because > society said so. > However, in doing so, they inadvertently enabled some of my sister’s worst > behavioral traits. They were simply unable to do anything else. There WERE > no options. > At 61, my sister will not change. Her DXes, and the environmental conditions > that inadvertently exacerbated some of the worst symptoms, have conspired to > render her among those kinds of patients that some clinicians REFUSE to > treat because of their intractability. (I’m not exaggerating this. This is a > fact.) > I submit to you that the combination of biology and environment conspires > against well meaning parents and seriously neurobiologically disordered > children to create a nightmare for  both. Fortunately, today, there is help > for both. > Defensiveness is understandable. And words like "manipulation" and "trauma" > are filled with implications that render parents livid with a > self-recrimination, doubt and rage of their own, because of society’s > attitudes that ‘it’s all your fault.’ The holdover is still there. > However, "traumatic event" should perhaps be written as ‘traumatic events’, > in light of the fact that children living with these difficult conditions DO > experience trauma. > Merely living with seriously out of control bodies and thoughts IS > traumatic. > Joanne’s comments were right on target. > The parents’ reactions to those comments were right on target. > The problem, IMHO, were the various REACTIONS to those comments, on both > sides, after they were made. > It’s no surprise that this happened. I’ve seen this all my life. My sister > is six years older than I am. I’ve seen the pain of my parents. I still see > it in my elderly mother, who struggles to understand, and still blames > herself, wrongfully. But she is of the generation that believes that it’s > solely parenting that is responsible. Intellectually, she knows my sister is > ‘wired differently.’ Emotionally, she’s an 88 year old woman who still feels > responsible for her sickest child’s lifelong struggles with Demons most of > you would find absolutely unbelievable. I haven’t seen a story here in all > my years on AST that would compare to her suffering. It’s lifelong. And it > didn’t get better. It got worse. I expect, some day, to get ‘that phone > call’ that tells me my sister has been killed, if not by her own hand, at > the hands of others. She is that sick, and yet, not sick enough to be > institutionalized with a formal, protracted, and very difficult legal > procedure destined to fail. > But I am also realistic about it. Had she had everything she needed > medically as a child, young adult, older adult, things might have been > somewhat different. Perhaps. No guarantee. Because the person with illness > has to want to get better. And that is the rub. Some don’t. It’s easier > being irresponsible. Having others take care of what you leave behind. And > when you are so ’sick,’ it encourages others to provide all that you need to > keep you right where you are. Out of love and compassion. And because there > is no alternative. > My sister is disabled, emotionally. She is on full disability. She hasn’t > been able to hold down a job in decades, of any duration. She is self > destructive. She cannot maintain stable relationships. Even with her own > daughter. She cannot communicate civilly for any length of time with family > members or others. She is manipulative in the worst way, crippled by > thoughts of guilt after her ‘rages,’ and yet nothing will prevent them > again. "Thoughts" of guilt, because she may be truly unable to feel the > guilt. Some people go through the motions, because they believe it’s what > they should feel. But can’t. > And her rages don’t involve the mere breaking of things or punching holes in > walls. They include the worst kind of verbal and psychological abuse a > person can inflict upon another. Especially if that person is younger, > weaker, and more innocent. > Guilt has a place in life. It makes us change our behavior. Or is supposed > to. > Some people just can’t ‘use’ it that way. The capacity isn’t there. > Some people call that psychopathology. > Some people say it stems from differences in wiring. > Some people say it stems from environmental conditions that exacerbate it. > Some say all of the above. > I can tell you this. Our parents are two of the dearest, sweetest, kindest, > most generous people you would ever meet. If I could have chosen my parents, > I’d have chosen the ones I got. > But the parenting style that worked for me, indeed, the one I thrived under, > did NOT work for my sister. > It was NOT my parents’ fault. > They did the best they could with what they had. > So, parents out there, your emotional, visceral response to words like > "manipulation" and "trauma" is understandable. I’ve seen it first hand. > However, these words are part and parcel of life. Especially life for the > seriously compromised. > The difference is that you have options. You have choices. You have > treatments and your children have opportunities that my own parents and > sister never had. > Including this support group. For all its flaws, it does result in dialogue > that results in learning. > Including learning about ourselves, and just what sets us off. > If something you read here does that to you…sets you off…then examine > your own hearts and souls for precisely what it might be. > None of us does it right all the time. We are, after all, humans, with > flaws. > But we can learn. And as importantly, we can believe that there just might > be a ‘better way’ somewhere. > In this day and age, there is. > Fifty years ago, there wasn’t. > My parents would have given their arms and legs to have the opportunity to > speak with people here, like we do every day, in this manner. > The way we do, and take for granted. > KAT in CT

Response:

"Patti" <pmbee…@cs.com> wrote in message

news:20010629150120.19628.00001622@ng-fy1.news.cs.com… > >From: "inventing" strac…@email.msn.com > >"Tourette Email" <touretteem…@cs.com> wrote in message > >news:20010629005931.02542.00001302@ng-mj1.news.cs.com… > Dear  stracman, > I’m sorry, I thought I was being clear that when I used terms like ‘most’ in my > post. (Excuse me while I get stuck on that rhyme.  lol  :-).) > that I was refferring to children with multiple complex dxes of not just TS but > also a long list of aphabet soup wich would also include but not be limited to > disorders like ADHD, OCD, rage, Asperger’s, bipolar and so much more.

My misunderstanding, then.  Since it was unclear to me, I wanted to make sure that it was clear to others. > I thought I had made that clear. > I got the sense that I was being nit picked.

I hoped that that was NOT how I was coming across, thus the disclaimer.  It is just that I remember in my early days (I’ve been at this 10 years now) of looking for information on TS, words like most, always, usually, often either scared me to death, or gave me great hope. >  There is a "politically correct" segment of the TS population which would like > to distance itself from yucckier issues like rage.

I never felt that they were being "politically correct".  Rather, they are making sure that we understand what is probably connected to the TS and what is probably connected to the "alphabet soup".  (I do like your description.) I know that it has certainly helped us understand what is going on in our family.  We have a mix of "alphabet soup" distributed amongst the other 3 members of my family.  They gang up on me and tell me it’s not "normal" for me to be so "normal".  (Then why am I the only one with a weight problem?<VBG>  ) > I’ll help you out and make it clear that kids who have a single dx of TS only > and no other dx RARELY rage.  TS is just tics and nothing more.  TS does not > cause rage.  Unfortunatly my experince has forced me to deal with the ugly fact > that SOME kids with TS DO rage.  .

I’d certainly agree with that. > And as to my sources of information on the subject of rage I thought I also > made that clear.

Guess I missed that, too.  Sorry if I made you feel picked on.  Or that I was trying to undermine your credibility.  Nothing farther from the truth. This goes back to my initial misunderstanding whether you were talking about TS kiddos or TS+ kiddos! <VBG> > The fact that what I say does not agree with what you have read does not make > me wrong or make you wrong.  You and I can both be looking at the same elephant > and you see the ears while I see the trunk.  Still we see the same

elephant. Never intended to imply that you did not know what you were talking about. Only to clarify some details.  Too bad this medium is so cold.  So easy for us to misunderstand each other. still inventing, KC – Hide quoted text — Show quoted text -> Patti > TS email groups for everyone: > http://ourworld.cs.com/TouretteEmail/

Response:

Leslie DeLong wrote: > Dear Patti > Thanks so much for this post – it has been incredibly helpful!!!

I agree. Patti put her finger on the same feelings the original post generated in me (even though I don’t deal with this as a parent), and went on to address them very well! > > Reading your reply made me think that you felt that this child must have > > suffered from some traumatic experince, that there must be some psychological > > cause.  By pychological I mean an event that happened in the child’s > life.  (As > > opposed to neurological, by which I mean a problem with the functioning of the > > child’s brain.) > I’ve had discussions with my own therapist about this (both about my mom > and Alex).  Her feeling was that it’s always possible to "find" a > precipitating cause in the past.  

From the rest of your description (below), I understand what she means, but I take difference with the idea that it’s "always" possible to find a precipitating cause.  The Yale Group has done an excellent job of conveying the notion (in words better than I can that there is a complex interplay between genetic and environmental factors.  We can’t discount environmental factors as they impact upon the severity of the expression of genetic conditions, they often play a part, but we can’t say they *always* play a part, or a large part, or that they can fully explain the severity of expression … > As I see > it, the real question is whether the behavior was actually precipitated by > those events, or by a neurochemical abnormality.  I think the latter.  

Right … or, an interplay between the two. > I am so fortunate that the rages don’t happen in public!  It’s good to be > reminded that I do have blessings.  

Many people report this … the child feels safer to "rage" at home … >  My husband cannot deal > (emotionally) with mental illness – he doesn’t like to talk about it, but > is supportive in other ways.  

Another familiar scenario > I think best when I am in a dialogue.  Child rearing books have been my > main source of dialogue over the years.  Usually it didn’t even matter > what the thrust of the book was.  Some random phrase would open a whole > new train of thought and I would be off and running.

Then you might enjoy my favorite book, Mark Katz’s, "On playing a poor hand well:  insights from the lives of those who have overcome childhood risks and adversities."  Page after page, he had these one-liners that would set my mind whirling … I still love that book, as it discusses childhood resilience in ways that inspire hope and optimism! > I just stumbled on "executive function" for the first time in review > article that my husband pulled off of medline for me.  We have felt for > years that Alex was missing some logical connections, but I never knew > there was a expression for it.

Here’s a great article … understanding of executive function in TS has possibly been confounded by the presence of ADHD.  A thorough evaluation will help, as the role of EF in TS is not as clear as has been generally accepted at times … other factors could be at play. http://pub23.ezboard.com/ftourettesyndromenowwhatfrm5.showMessage?top… > Maybe Alex is unusual, because he’s actually very good at planning things > most of the time.  There is only a subset of times when he totally loses > that ability.

My younger son tested very well on one neuropsych evaluation of EF … — Tourette Syndrome – Now What? http://members.home.net/tourettenowwhat "Dr Laura" Schlessinger on Tourette’s http://members.home.net/tourettenowwhat/DrLauraTS.htm

Response:

> Kat, I realize I am merely restating what you have said here.  I would just like > to offer that I do not think finding appropriate help is an easy task, even > today.   And judgment from anyone who hasn’t been there done that, only adds > stress in an already stressful situation.

Agreed. We see that here every day! > I agree with you.  However, I would like to give you an example of what I > believe is an appropriate way for a *professional* to use the word > manipulation.  Our beloved pediatric psychologist had the following to say about > some speculating that threats at self-mutilation or hurting oneself are > "manipulative".  She said "I say that even if these threats are ‘manipulative’, > the child obviously needs help or they wouldn’t be saying such things". Now > THIS I can agree with.

Agreed, again. It think it’s contingent upon ALL of us, however, to ask for what we need, and to do so in a way that refrains from fomenting disadvantageous and painful public interchanges. Everyone needs to think about not only the impact of his or her words, but the subsequent impact of how we respond to another’s use of and/or reactions to them. In this latest case, I submit that there was enough ‘fault,’ for whatever that’s worth, to go around. None of us comes off looking blameless here. But I don’t see that as ‘wrong.’ I see that merely as ‘normal.’ We all do that from time to time. I’ve never met a person who DIDN’T, on OR off the ‘net. > As someone pointed out, Marietta’s *thing* is about language, and I guess my > *thing* would be finding help for our kids.

I think we all share that goal. And that’s what makes it so important that we consider this: the process is the  most painful part of achieving any goal. People will disagree upon ways to get there. They will also need, however, to agree to disagree, as Leslie put in another post. The KEY, however, is that they all SHARE the same desired outcome, which you just stated so well. "…finding help for our kids." I will add, and for ourselves as well.  > > > The difference is that you have options. You have choices. You have > > treatments and your children have opportunities that my own parents and > > sister never had. > I am reiterating that this may not be as readily available as you might hope.

It’s a question of relativity, Treadin’……at least people now have the option of finding it SOMEwhere. At least there are people who are telling you, with good reason, data, and authority, that it’s NOT solely the responsibility of the parent to generate ‘good kids.’ In fact, that myth is getting dissected daily now, with more and more data that suggests the true underpinnings of behavior that says that ‘good’ ain’t necessarily so! I never said it was easy. I am, however, saying that it’s at least possible. As it wasn’t so many years ago. My sister would have been tossed into a mental institution, labeled schizophrenic, and my parents blamed for ‘causing’ her problems. All of that happened, by the way, although she wasn’t tossed, she elected a short term incarceration in a state hospital. She was trying, as so many of us have, to find the right answers. Back when it still mattered, before the worst of the damage had been done, before she became, quite simply, unwilling as well as unable to do it. Before it became contingent upon her family to try to ‘force’ her to get help that was becoming available to her, which she refused by threatening to kill herself if anyone ever ‘did that to me’. And these were not idle threats. Incarceration in those days didn’t help her a bit. But I recall the words of the psychologist, who also happened to be a personal friend of mine, all those many years ago: "As she ages, loses her looks, and her ability to get what she wants in the way she does now, it won’t be a pretty picture for her." Those words were prophetic. The therapy was misguided, at best, because no one had any idea what the real CAUSES were. So everything was Oedipus or Electra or some other Freudian concept that we would now find hilarious, were it not so tragic. The meds in those days didn’t do anything but turn people into zombies. I know, because I took some of them too, for my ‘nervous condition’ as my TS was diagnosed at the time. (Thorazine, the frightening precursor to Haldol) I can’t blame my sister for not wanting to take those. I didn’t either, and so I stopped. > Kat – I realize I’m preaching to the choir with you.  The subject of my > daughter’s manic episode 3 years ago still brings me to tears and it was NOT > easy finding appropriate help for her.

I’m thankful that it only lasted a ‘mere’ three years for you all. I wish my own family had been so fortunate. Most of all, I wish my sister had been that fortunate. I’ve seen glimpses of who she might have been. Of who, on some level, she still is. And it breaks my heart. Daily. For decades. And it’s not over yet. > However, if you met her now, I know you’d be delighted!

I know I would! Out of her darkness has been born a child with a wisdom probably far beyond her years…..if not recognizable now….in the future, I"m sure. I am, truly happy for you. You are blessed. And I know that you know that. KAT in CT

Response:

TreadinWater wrote: > And unfortunately, today, there still remain *professionals* who pass judgments > and make incorrect assumptions that, at best hinders timely help for children > and, at worst, eliminates getting appropriate help.

I haven’t been there, H2O, but through you, Vicki, Marietta, others … and Lyme … I’ve learned to feel a bit of what you feel/felt when things were so rough, and to try to watch my language when referring to troubling times, even though I know I still goof — often.  I am so glad that you continue to soldier your way through this in a manner that gives hope to all, did not succumb to the dire prognostications, persevered in sorting it all out and finding the right treatment, and can now offer sound advice for anyone who feels the fear that you felt three years ago … judging from the articles written by your Dr. on healthcentral.com , you really struck a gold mine! — Tourette Syndrome – Now What? http://members.home.net/tourettenowwhat "Dr Laura" Schlessinger on Tourette’s http://members.home.net/tourettenowwhat/DrLauraTS.htm

Response:

> Then you might enjoy my favorite book, Mark Katz’s, "On playing a poor > hand well:  insights from the lives of those who have overcome childhood > risks and adversities."  Page after page, he had these one-liners that > would set my mind whirling … I still love that book, as it discusses > childhood resilience in ways that inspire hope and optimism!

My local library doesn’t have it, so I’ll try and find it elsewhere.  I LOVE to read, so book recommendations make me a happy camper. http://pub23.ezboard.com/ftourettesyndromenowwhatfrm5.showMessage?top… How much of your time goes into this?  You have such a fabulous collection.  When I’m more adjusted to all the info, I really need to spend some serious time on your web site. thanks leslie

Response:

- Hide quoted text — Show quoted text -Tourette Email wrote: > What I am saying is that in my experince as a mother and as a person who has > had internet dialouges with many people in this sames situation > that there is almost never some traumatic event in the child’s life. > The implication that the child suffered trauma makes me uncomfortable because > of my own experince with my 13 year old son who has been rage free for six > months. > He raged for almost three years. > I get defensive about stuff like this. > I was constantly being blamed.  I was told that I must be a bad parent if my > son behaved this way.  That clearly my son had been through some traumatic > event. > But he hadn’t.  He had a very good life.  I was the kind of mom who read every > book on positive parenting published int he last 20 years.  I was the kind of > mom who didn’t just give a time out but also had problem solving sessions with > my son afterward. > But no one asked me what kind of mom I was.  No one asked did my son have a > good life.  It was just assumed that he suffered from some traumatic event or > that I must be a lousy mom. > My son was the sweetest kid you could ever meet.  He had a great self image. > And a wonderful sense of humor. > So why was he trying to beat the crap out of me?  Happy well adjusted children > do not overturn their desks at school and throw books at their teacher. > But happy well raised children who have neurological problems might.  Good > parents can have children who beat the crap out of their five year younger > siblings. > Children who have had good happy lives might puch holes in walls and treaten > harm to their parents. > No, this is not ‘normal.’  But this is common among children who have multple > dxes of ADHD,OCD,TS,Aspergers.Bipolar.ODD,ect.. > I do not beleive the child was being manipulative because most of our children > do not possess the level of executive functioning skills required to > manipulate. > Executive function is like the manager of the brain.  It is the ability to plan > a course of action, carry out that plan, and then check to see if it worked or > not. > Most of our kids are not capable of that level of cognitive processing.  More > likely they do this: >                               READY —  Fire  –  AIM

Patti, I have had much the same experiences with my daughter when she was just 7.  She is now 10 and it was only with correcting the neurochemical imbalances with a mood stabilizer that we could begin to work on the interpersonal dynamics piece of it. Without medication intervention, all the parenting in the world was just plain useless. I too have a boatload of parenting books.  And I have two younger sons who these parenting techniques work very well with.  It was only when I read The Explosive Child that I have ever gotten any direction on helping manage my daughter and when she became stabilized, we could all address how we each have a role in how we interact through difficult periods. When trying to get help, I ran into pediatricians not *hearing* me and blowing my concerns off as normal.  I was on the brink of getting help for ME in order to help me manage my daughter, when my daughter upped the ante by developing suicidal ideation (this was at age 7 with NO medication and having only thus far receiving a TS diagnosis). Then we started the process of trying to get help for her.  That was when I started running into the judgmental "what a bad parent you must be" crappola that gets me very defensive to this day.  I was on the receiving end of this from medical professionals as well as from my in-laws who think the answer to everything is to hit a child.  I am adamantly opposed to physical violence against a child and my husband and I standing firm on this *against* his parents caused enormous alienation from family members that, I feel, should have been supportive of us through these dark, unimaginable months. All in all, I think it is very complicated, highly stressful and being on the receiving end of judgment adds enormous stress in an already enormously difficult situation. TreadinWater

Response:

> One thing I read not so long ago helped put it all into perspective: > I’m paraphrasing this. > Children with serious neurobiological disorders can become so traumatized by > living with them that, as they become adults, they may suffer something akin > to PTS, post traumatic stress disorder, simply from having had to deal with > the impact of their conditions upon themselves and those around them. > Especially those who did not receive the appropriate help early on.

This seems very well put to me.  In fact, one of the most chilling things I have ever read, that will haunt me always, is from the preface of the Papolos’ book, The Bipolar Child, where they state: quote: We want to state clearly that, given the accumulating knowledge in the field of research and the reactions of the children in our study, no doctor should prescribe a stimulant or antidepressant drug to a child whose family history reveals mood disorders without suspecting a ’snake beneath the rock’.  Parents need to be warned of the possibilitiy that these drugs may wreak havoc on a possible quiescent bipolar gene. In other words, bipolar disorder should be ruled out before any of the stimulant drugs or antidepressants are prescribed.  Instead, mood-stabilizing drugs such as lithium, Depakote, or Tegreto should be considered as a first line of treatment – early on- before episodes become more frequent, and the illness warps the psychological development of a child and destroys the life of a family. end quote (bold added by me for emphasis) The Papolos have encountered opposition from medical professionals firmly entrenched in their beliefs, however, recent studies are proving the Papolos have been right all along. – Hide quoted text — Show quoted text -> Also, EACH child perceives his or her world differently than siblings. EACH > child is basically a new card in the deck, with the deck stacked different > against or for him, according to HIS or HER perceptions of it. > The ’same’ parenting style for each child doesn’t always work. No matter HOW > good it is, and how caring the parents are, children who are wired > differently, especially with ‘disordered’ conditions, will require different > parenting styles. > My parents never knew this. They never had the advantage of the Internet, > enlightened clinicians, medications, cutting-edge therapies, or even support > groups. They simply had to try to live with a difficult child who didn’t > respond to anything. And they had to assume ‘blame’ for that, sadly, because > society said so. > However, in doing so, they inadvertently enabled some of my sister’s worst > behavioral traits. They were simply unable to do anything else. There WERE > no options. > At 61, my sister will not change. Her DXes, and the environmental conditions > that inadvertently exacerbated some of the worst symptoms, have conspired to > render her among those kinds of patients that some clinicians REFUSE to > treat because of their intractability. (I’m not exaggerating this. This is a > fact.) > I submit to you that the combination of biology and environment conspires > against well meaning parents and seriously neurobiologically disordered > children to create a nightmare for  both. Fortunately, today, there is help > for both.

And unfortunately, today, there still remain *professionals* who pass judgments and make incorrect assumptions that, at best hinders timely help for children and, at worst, eliminates getting appropriate help. Although, at least, now there are qualified, appropriately trained, pediatric diagnostitians, there certainly aren’t enough of them and finding them is not an easy thing and there still remain many who believe they are qualified who just simply are not. > But I am also realistic about it. Had she had everything she needed > medically as a child, young adult, older adult, things might have been > somewhat different. Perhaps. No guarantee. Because the person with illness > has to want to get better. And that is the rub. Some don’t. It’s easier > being irresponsible. Having others take care of what you leave behind. And > when you are so ’sick,’ it encourages others to provide all that you need to > keep you right where you are. Out of love and compassion. And because there > is no alternative.

And sadly, this is what I find chilling about the Papolos’ statements in their Preface to their book. Kat, I realize I am merely restating what you have said here.  I would just like to offer that I do not think finding appropriate help is an easy task, even today.   And judgment from anyone who hasn’t been there done that, only adds stress in an already stressful situation. I remain very defensive about inference and assumptions by anyone purporting themselves as a medical proffesional and I certainly empathize with how difficult it is as a mother to be reaching out for HELP and getting bombarded with "must be the parenting" implications by those very proffesionals. > So, parents out there, your emotional, visceral response to words like > "manipulation" and "trauma" is understandable. I’ve seen it first hand. > However, these words are part and parcel of life. Especially life for the > seriously compromised.

I agree with you.  However, I would like to give you an example of what I believe is an appropriate way for a *professional* to use the word manipulation.  Our beloved pediatric psychologist had the following to say about some speculating that threats at self-mutilation or hurting oneself are "manipulative".  She said "I say that even if these threats are ‘manipulative’, the child obviously needs help or they wouldn’t be saying such things".  Now THIS I can agree with. As someone pointed out, Marietta’s *thing* is about language, and I guess my *thing* would be finding help for our kids. > The difference is that you have options. You have choices. You have > treatments and your children have opportunities that my own parents and > sister never had.

I am reiterating that this may not be as readily available as you might hope. – Hide quoted text — Show quoted text -> Including this support group. For all its flaws, it does result in dialogue > that results in learning. > Including learning about ourselves, and just what sets us off. > If something you read here does that to you…sets you off…then examine > your own hearts and souls for precisely what it might be. > None of us does it right all the time. We are, after all, humans, with > flaws. > But we can learn. And as importantly, we can believe that there just might > be a ‘better way’ somewhere. > In this day and age, there is. > Fifty years ago, there wasn’t. > My parents would have given their arms and legs to have the opportunity to > speak with people here, like we do every day, in this manner. > The way we do, and take for granted. > KAT in CT

Kat – I realize I’m preaching to the choir with you.  The subject of my daughter’s manic episode 3 years ago still brings me to tears and it was NOT easy finding appropriate help for her. However, if you met her now, I know you’d be delighted! TreadinWater

Response:

"Tourette Email" <touretteem…@cs.com> wrote in message

news:20010629005931.02542.00001302@ng-mj1.news.cs.com… OK, I agree with everything you say up to here.  (By the way I commented on amother posting of yours before I read this one.  Nothing gets posted in the order we write does it?) > I do not beleive the child was being manipulative because most of our children > do not possess the level of executive functioning skills required to > manipulate.

To clarify:  When you say "most" are you referring to most TS kids?  Or most multiple dx kids, with TS/OCD/ADHD etc? And I am still concerned that "most" does not give an accurate description to the parents who are reading this.  Honest, I am not trying to be picky over unimportant things but this "most" business is bugging me. I also have a daughter who raged, and who has TS/OCD/ADHD/LD.  We’ve been in counseling, read the literature, read a lot of the research.  Everything has pointed to the raging being connected to ADD/ADHD, even possibly to the OCD but not to the TS.  This info confirmed by her counselor who saw her in high school.  (Everyone remember the football player up against the lockers incident?) I guess that is the point I am trying to make. And I am concerned about the word "most" when you refer to manipulation and the level of executive functioning skills.  By my reading, I don’t see this as a "most" situation reguarding TS.  Perhaps associated with some of the other disorders.  Certainly have never seen a lack of manipulation skills in my daughter! <VBG> > Executive function is like the manager of the brain.  It is the ability to plan > a course of action, carry out that plan, and then check to see if it worked or > not. > Most of our kids are not capable of that level of cognitive processing. More > likely they do this: >                               READY —  Fire  –  AIM > I wish I could remember the name of the guy I’m quoting from.

I do,too.  I wonder what age group he was talking about.  And under what conditions.  How old is your child?  My understanding and observation is that as our TS kiddos mature, and become more self aware, they certainly seem to gain that level of processing IF they ever had problems with it before. I think over the huge numbers of adults with TS, and my husband, who visit this site.  Problems with cognitive processing do not seem a factor, except in times of stress, which is also normal, I believe, in the general population. > I am not saying you are wrong, just that I see it from another

perspective. Guess I could use this closing line, also.  I’m not saying you are wrong. I’d just like to know your sources for this information since it is sooo the opposite of what I understand from my resources.  Though I haven’t mentioned them, I’d have to include my daughter’s neurologist in the info mix also. – Hide quoted text — Show quoted text -> Patti > http://ourworld.cs.com/touretteemail/

Response:

Dear Patti Thanks so much for this post – it has been incredibly helpful!!! > Reading your reply made me think that you felt that this child must have > suffered from some traumatic experince, that there must be some psychological > cause.  By pychological I mean an event that happened in the child’s life.  (As > opposed to neurological, by which I mean a problem with the functioning of the > child’s brain.)

I’ve had discussions with my own therapist about this (both about my mom and Alex).  Her feeling was that it’s always possible to "find" a precipitating cause in the past.  In Alex’ case that would unquestionably be a number of difficlut occurences when he was three, including a difficult pregnancy for me, a new sibling and two teachers at his daycare who ended up being total control freaks.  (That was the only time in his life that Alex has been badly behaved when he was away from home – I suspect they saw a couple of rages. All the kids were having trouble and the parents eventually forced the teachers to quit. The teachers were actually wonderful women, I liked them both a whole lot, but the *combination* was terrible).  But I digress.  It’s certainly possible to point to that year and trace the impact on his current behavior.  As I see it, the real question is whether the behavior was actually precipitated by those events, or by a neurochemical abnormality.  I think the latter.  I think he just latched on to many of the issues of that time and hasn’t let go.  I’ve found over the past year that every time Alex and I resolve a precipitating cause for his rages, a new one immediately emerges.  I will contine to address the issues, but I agree that medication is probably necessary. > I get defensive about stuff like this.   > I was constantly being blamed.  I was told that I must be a bad parent if my > son behaved this way.  That clearly my son had been through some traumatic > event.  

I am so fortunate that the rages don’t happen in public!  It’s good to be reminded that I do have blessings.  My big problem is with my family (specifially my parents and my younger sister.)  My mom believes that "mental illness" is a character flaw, so she has dealt with her own depression by blaming her fatigue, etc on my dad and us – mostly my older sister (who has bipolar) and now me as well.  At the time, her disciplinary measures were within the norm, but now her methods would be considered emotionally and phycally abusive. She was originally very hard on Alex for his poor behavior.  Now she has shifted to blaming me, which is better for Alex but not great for me.  Fortunately, they live far away and prefer not to visit us, so I can choose my times.  Things have improved tremendously in recent years as the boys have establshed very good bonds with their cousins.  My older sister is my main allie, but her dependibility fluctuates with her emotional state.  My husband cannot deal (emotionally) with mental illness – he doesn’t like to talk about it, but is supportive in other ways.  It took me a long time to accept that my SISTER was mentally ill, then accept that *I* was mentally ill and finally to be willing to explore the possibility that my son was mentally ill. That lead me to discovering whole different areas of the library. > I was the kind of mom who read every book on positive parenting published in

the last 20 years. I think best when I am in a dialogue.  Child rearing books have been my main source of dialogue over the years.  Usually it didn’t even matter what the thrust of the book was.  Some random phrase would open a whole new train of thought and I would be off and running. > My son was the sweetest kid you could ever meet.  He had a great self image. > And a wonderful sense of humor.

Ditto – Alex’ dad is so thrilled that Alex shares his love of bad puns > I do not beleive the child was being manipulative because most of our children > do not possess the level of executive functioning skills required to > manipulate.  

I just stumbled on "executive function" for the first time in review article that my husband pulled off of medline for me.  We have felt for years that Alex was missing some logical connections, but I never knew there was a expression for it. > Executive function is like the manager of the brain.  It is the ability to plan > a course of action, carry out that plan, and then check to see if it worked or > not.

Maybe Alex is unusual, because he’s actually very good at planning things most of the time.  There is only a subset of times when he totally loses that ability. > Most of our kids are not capable of that level of cognitive processing.  More > likely they do this: >                               READY —  Fire  –  AIM > I wish I could remember the name of the guy I’m quoting from.  

Thanks, i love that discription.> > All the questions you asked of this parent are questions that must be asked

I actaully found those questions very useful.  I rarely do a coherent job of answering questions when I haven’t had time to mull them for a while. I’ve got Joanne’s posts saved, and hope to get around to addressing the questions soon. This is justthe type of thing I needed. leslie

Response:

> The implication that the child suffered trauma makes me uncomfortable because > of my own experince with my 13 year old son who has been rage free for six > months. > He raged for almost three years. > I get defensive about stuff like this.

That’s understandable. I do not have a child that does this. But I do have a sister with multiple DXes (NOT including TS), who does, and has, in one respect or another, for as long as I can remember. (She would make most of your kids look like angels, frankly.) I’ve studied her conditions for years, trying to make sense out of them. And I’ve seen the suffering of my parents, who blamed themselves for something they simply could not understand, nor was there help for them, in the Diagnostic Dark Ages, for them to do so. (My sister is 61 years old.) One thing I read not so long ago helped put it all into perspective: I’m paraphrasing this. Children with serious neurobiological disorders can become so traumatized by living with them that, as they become adults, they may suffer something akin to PTS, post traumatic stress disorder, simply from having had to deal with the impact of their conditions upon themselves and those around them. Especially those who did not receive the appropriate help early on. Also, EACH child perceives his or her world differently than siblings. EACH child is basically a new card in the deck, with the deck stacked different against or for him, according to HIS or HER perceptions of it. The ’same’ parenting style for each child doesn’t always work. No matter HOW good it is, and how caring the parents are, children who are wired differently, especially with ‘disordered’ conditions, will require different parenting styles. My parents never knew this. They never had the advantage of the Internet, enlightened clinicians, medications, cutting-edge therapies, or even support groups. They simply had to try to live with a difficult child who didn’t respond to anything. And they had to assume ‘blame’ for that, sadly, because society said so. However, in doing so, they inadvertently enabled some of my sister’s worst behavioral traits. They were simply unable to do anything else. There WERE no options. At 61, my sister will not change. Her DXes, and the environmental conditions that inadvertently exacerbated some of the worst symptoms, have conspired to render her among those kinds of patients that some clinicians REFUSE to treat because of their intractability. (I’m not exaggerating this. This is a fact.) I submit to you that the combination of biology and environment conspires against well meaning parents and seriously neurobiologically disordered children to create a nightmare for  both. Fortunately, today, there is help for both. Defensiveness is understandable. And words like "manipulation" and "trauma" are filled with implications that render parents livid with a self-recrimination, doubt and rage of their own, because of society’s attitudes that ‘it’s all your fault.’ The holdover is still there. However, "traumatic event" should perhaps be written as ‘traumatic events’, in light of the fact that children living with these difficult conditions DO experience trauma. Merely living with seriously out of control bodies and thoughts IS traumatic. Joanne’s comments were right on target. The parents’ reactions to those comments were right on target. The problem, IMHO, were the various REACTIONS to those comments, on both sides, after they were made. It’s no surprise that this happened. I’ve seen this all my life. My sister is six years older than I am. I’ve seen the pain of my parents. I still see it in my elderly mother, who struggles to understand, and still blames herself, wrongfully. But she is of the generation that believes that it’s solely parenting that is responsible. Intellectually, she knows my sister is ‘wired differently.’ Emotionally, she’s an 88 year old woman who still feels responsible for her sickest child’s lifelong struggles with Demons most of you would find absolutely unbelievable. I haven’t seen a story here in all my years on AST that would compare to her suffering. It’s lifelong. And it didn’t get better. It got worse. I expect, some day, to get ‘that phone call’ that tells me my sister has been killed, if not by her own hand, at the hands of others. She is that sick, and yet, not sick enough to be institutionalized with a formal, protracted, and very difficult legal procedure destined to fail. But I am also realistic about it. Had she had everything she needed medically as a child, young adult, older adult, things might have been somewhat different. Perhaps. No guarantee. Because the person with illness has to want to get better. And that is the rub. Some don’t. It’s easier being irresponsible. Having others take care of what you leave behind. And when you are so ’sick,’ it encourages others to provide all that you need to keep you right where you are. Out of love and compassion. And because there is no alternative. My sister is disabled, emotionally. She is on full disability. She hasn’t been able to hold down a job in decades, of any duration. She is self destructive. She cannot maintain stable relationships. Even with her own daughter. She cannot communicate civilly for any length of time with family members or others. She is manipulative in the worst way, crippled by thoughts of guilt after her ‘rages,’ and yet nothing will prevent them again. "Thoughts" of guilt, because she may be truly unable to feel the guilt. Some people go through the motions, because they believe it’s what they should feel. But can’t. And her rages don’t involve the mere breaking of things or punching holes in walls. They include the worst kind of verbal and psychological abuse a person can inflict upon another. Especially if that person is younger, weaker, and more innocent. Guilt has a place in life. It makes us change our behavior. Or is supposed to. Some people just can’t ‘use’ it that way. The capacity isn’t there. Some people call that psychopathology. Some people say it stems from differences in wiring. Some people say it stems from environmental conditions that exacerbate it. Some say all of the above. I can tell you this. Our parents are two of the dearest, sweetest, kindest, most generous people you would ever meet. If I could have chosen my parents, I’d have chosen the ones I got. But the parenting style that worked for me, indeed, the one I thrived under, did NOT work for my sister. It was NOT my parents’ fault. They did the best they could with what they had. So, parents out there, your emotional, visceral response to words like "manipulation" and "trauma" is understandable. I’ve seen it first hand. However, these words are part and parcel of life. Especially life for the seriously compromised. The difference is that you have options. You have choices. You have treatments and your children have opportunities that my own parents and sister never had. Including this support group. For all its flaws, it does result in dialogue that results in learning. Including learning about ourselves, and just what sets us off. If something you read here does that to you…sets you off…then examine your own hearts and souls for precisely what it might be. None of us does it right all the time. We are, after all, humans, with flaws. But we can learn. And as importantly, we can believe that there just might be a ‘better way’ somewhere. In this day and age, there is. Fifty years ago, there wasn’t. My parents would have given their arms and legs to have the opportunity to speak with people here, like we do every day, in this manner. The way we do, and take for granted. KAT in CT

Response:

I would like to respond to Joanne’s original reply on this topic. First I will make it clear that I am not an MD or a PhD or a therapist.  I am a mom of a child with TS, ADHD, OCD, misdiagnosis of ODD, who raged for about three years and is now rage free.  My educational backgroud is bachelor degree level with major in psychology and minor in sociology with emphasis on family and children.   Everything I have to say is based on my opinion and my experince in internet disscussions with a great number of people dealing with TS and related conditions. Especially people with children who have multiple dxes.   My perspective is going to be different from yours since I have little training in assessment and because I am a mom of a child who raged.   Reading your reply made me think that you felt that this child must have suffered from some traumatic experince, that there must be some psychological cause.  By pychological I mean an event that happened in the child’s life.  (As opposed to neurological, by which I mean a problem with the functioning of the child’s brain.) In my experience the behaviors described are typical of kids with TS who also rage.  I am in no way normalizing this.  What I am doing is stating that there are some common symtoms which I have observed.   What I am saying is that in my experince as a mother and as a person who has had internet dialouges with many people in this sames situation that there is almost never some traumatic event in the child’s life. The implication that the child suffered trauma makes me uncomfortable because of my own experince with my 13 year old son who has been rage free for six months. He raged for almost three years.   I get defensive about stuff like this.   I was constantly being blamed.  I was told that I must be a bad parent if my son behaved this way.  That clearly my son had been through some traumatic event.   But he hadn’t.  He had a very good life.  I was the kind of mom who read every book on positive parenting published int he last 20 years.  I was the kind of mom who didn’t just give a time out but also had problem solving sessions with my son afterward. But no one asked me what kind of mom I was.  No one asked did my son have a good life.  It was just assumed that he suffered from some traumatic event or that I must be a lousy mom.   My son was the sweetest kid you could ever meet.  He had a great self image. And a wonderful sense of humor.   So why was he trying to beat the crap out of me?  Happy well adjusted children do not overturn their desks at school and throw books at their teacher.   But happy well raised children who have neurological problems might.  Good parents can have children who beat the crap out of their five year younger siblings. Children who have had good happy lives might puch holes in walls and treaten harm to their parents.   No, this is not ‘normal.’  But this is common among children who have multple dxes of ADHD,OCD,TS,Aspergers.Bipolar.ODD,ect..   I do not beleive the child was being manipulative because most of our children do not possess the level of executive functioning skills required to manipulate.   Executive function is like the manager of the brain.  It is the ability to plan a course of action, carry out that plan, and then check to see if it worked or not. Most of our kids are not capable of that level of cognitive processing.  More likely they do this:                               READY —  Fire  –  AIM I wish I could remember the name of the guy I’m quoting from.   All the questions you asked of this parent are questions that must be asked–by the doctor.  And once it has become clear that this is no a parenting issue or an issue of childhood trauma the next step is medication.  Talk therapy and parental interventions will be useless until the child becomes stable on medication.  Or if this is an issue of food allergies or vitamin defficencies that must also be addressed first.   I am not saying you are wrong, just that I see it from another perspective. Patti http://ourworld.cs.com/touretteemail/

Response:

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