'The Normal One': The Siblings of 'Damaged' Children

I’m a Normal Child and this hits close to home! We are 40 and 41 and the issues continue. I always tell parents of damaged kids to not forget their other kids. But most don’t care. What is that saying, You have 100 sheep, but the only one you care about is the one causing trouble, missing, running away…

Have you read the book? I will look for it, simply to confirm/enlighten my first impression based on the review. But I have a few minutes and MUST post my impressions:

1) Despite her credentials as a psych, this author came from a SEVERELY dysfunctional family unit. It especially bothers me since I am the parent of a dyslexic, extremely creative and imaginatively gifted child — possibly has much in common, neurologically, with her brother. The problems in her upbringing and her related pain, IMO, came from her parents ignorance and misplaced shame, NOT from her brother’s disability. (!!!)

2) Does her experience really have any validity to ‘most’ families including a disabled child, or does it only have relevance in families where the REACTION to the child’s disability is inherently (dreadfully! horribly!) dysfunctional? (You can already tell what I think, can’t you???)

3) If the book serves as a vehicle to help families prevent similar dysfunction through awareness, it is very valuable — but I don’t think parents should automatically ‘worry’ about damage to their ‘NT’ kids from having an ‘AT’ child — we ALL get some cross to bear…and kids will take their cue from us.

Being an activist for tolerance of ALL differences, be they due to race, religion, intellect, customs and behaviour, physical difference/deformity, personality differences, or neurological makeup, I really think kids with a disabled sibling have a chance to get EXTRA stuff…even if they also bear a share of the pain and heartache. I believe it is more the denial and silence and shame, the dysfunction of being taught to ‘pretend everything is normal’ that hurts children than the living with the tough stuff of life!

People have problems. Our job as humans is to keep working, striving, each one of us, to achieve, no to EXCEED our potential — regardless of what strikes are against us at the beginning.

Will be looking for your comments, Dad…

I had trouble from the start the first time they used the term “damaged” kids. Excuse me, my LD child is NOT damaged. This is one book I’d certainly pass on reading.

Janis

I think you misunderstandJanis, and perhaps that is partially my fault for posting this story on this board. The Caliban Syndrome is not usually used for siblings of children with mild disorders such as dyslexia or ADHD, but for those children whose disabled sibling has a more profound problem - full-blown autism, severe MR, low-functioning CP, etc.

I am not saying thatbeing a person or raising a child with a less severe condition, disorder or syndrome is a Sunday stroll along the lakeshore; the contacts I have had with adults and children with less extreme problems has reinforced the depth of struggle they typically have. Raising these children can most certainly be taxing, trying and sometimes overwhelming.

I do however think there is some degree of scale to the comparative struggles of raising a difficult child and living with a child who is more likely to have been kept locked in a back bedroom in days of old.

Again, forgive me for perhaps placing this article in the wrong forum. I have grown to respect the myriad opinions and inputs that I find at LDOnline and in particular this board, and as I try to make some sense out of reconciling my own experiences and observations with writeups and articles like this one.

Actually, when I read the article I was thinking of more behaviorly challenged siblings - ADHD, Oppositional Defiant Disorder, OCD, CD, substance abuse, Aspergers, etc.

I strongly believe parents underestimate the impact on the other sibs when there is a child in the house who is not typical, average.

Okay, Dad, thanks for clarifying. I do know families that have children who are severely muti-handicapped and it certainly effects the dynamics of the family. The frequent medical and therapy appointments consume the life of the mother, usually. I do really feel for these families, but the ones I know personally seem to do a much better job than the ones in the book description.

Janis

Dad, I hope you don’t mind, but I do have some comments, and I although I tried to resist posting them here, I just can’t. You see, I have “been there”. I was/am a sibling to a mentally retarded brother. I am going to cut and paste my comments I posted on another message board, months ago, when this very same topic came up. I couldn’t stop myself from typing my comments then either.

It was regarding a post made by a woman who had been told by her doctor she had a 25% chance of giving birth to a child with the same mental retardation as her sibling she grew up with. She and her husband went ahead and had a child anyway, and that child was born “typical”. She was thinking of having another child, but didn’t want her young daughter to grow up living the same miserable existance that she had.

Right away, there was anger by the members on this board, some of them livid, and the female poster was labelled a “troll”. She had to be, right? Her opinion offended many members of the message board, which was a board that deals with autism.

Here are my comments. There are 3 posts by me here. The last one was actually requested by a member of that message board. Please, no one take offense at my comments, because none is intended towards anyone. My story is just the reality of the situation I grew up in. Sometimes reality sux. Read on:

“I never post to this board, but I read it periodically, and felt the need to comment here. I am not a troll. I am a sibling to a severely mentally handicapped brother, and our parents had no clue how to care for him/what to do with or about him, etc. That was 30 some odd years ago, though. So, he lived at home with us, and never even went to school, not until he was an adult, and a family friend intervened. (Thank God!) I was just a child, didn’t understand him or the situation, was somewhat afraid of him, and I believe my parents were as well. My mother was at her wits end on a daily basis. My older brother and I thought it was wrong for my parents to simply let him “rot” at the house, but we said this to each other in whispers in the dark. My mother would have gone mad with rage if we had ever verbalized anything like this within her earshot. To be fair to her, though, there was no internet, or message boards in the late 60’s and 70’s to go to for help.

This was the way our life was at that time, I didn’t know any better, and I don’t think I could ever call myself a “poor me” sibling. That said, little children don’t always have the capacity for the kind of compassion we adults do. And I can say without a shred of guilt that my childhood would have been a great deal different had someone cared to intervene sooner.

I was tested and tested and tested more, during my first pregnancy, for fetal abnormalities. Not because I asked for these tests, but because the doctors required me to have them. That was only 12 years ago. Did I EVER question having children, because of my brother? Never. Not once, not even a flicker of doubt. ”

Here’s the second post by me, after some of the posters didn’t like what I had to say:

“”OOOOOO” says: <Disabled children are not damaged or bad. That’s reality.

<Compassion and love are not issues of “political correctness”.>

Of course they’re not. I never once mentioned damaged or bad in either of my posts, nor lack of love or compassion, and there was lack of neither one from me in my lifetime towards my brother. Those are incorrect and perhaps a little bit defensive interpretations of what I wrote? I simply related parts of my story, which is completely true, of what it was like growing up as a sister to a severely mentally disabled brother, and someone is offended?

To “XXXXXX”, who wrote:

<The post by “been there” speaks of living with a sibling with a disability. I highly respect her post.>

To you, I say thank you for your compassion and understanding. ”

And here is my last post on that board, after one of the members there actually asked me for my opinion. The member wanted to know what I would have wanted my parents to NOT do, for the sake of family harmony, or things that I perceived as being unfair, what would they be? He “gave me the floor”, to quote him.

“This is very difficult, but I’ll reply as best I can, and as briefly as I can, although I don’t think my/our experience is remotely like most siblings of disabled children today (at least I pray not!), and I’m sure not how your situation is or will be. Please remember, what happened to my brother occurred over 30 years ago. It doesn’t make it OK or any less a tragedy, but I do understand that help was not anywhere near as readily available as it is today, and even today enough help cannot be found or it just isn’t there.

Then again, some of the stories I’ve read on this very message board are eerily similar to the horrors my brother went through.

That said… Looking back, most of the things that I perceive as being “unfair” were the things that were done to my mentally handicapped brother, not to me or my older brother. Things to keep him “under control”, and out of sight. You would be appalled if you knew the lengths my mother would go to to accomplish these things. My father simply pretended my brother didn’t exist. He was in such denial.

But I can also see, now that I’m looking back on it all, that our (my older brother and mine) lives were profoundly affected by my brother’s disabilities, and my parents’ reaction to it. What do I wish they had done differently? I wish my mother hadn’t blamed herself for my brother’s disabilities. I wish she hadn’t been so ashamed of him. I wish we could have had friends over. We were never allowed to have friends in the house, and therefore had very few friends. No one could know about my brother, according to my mother. I wish someone would have found out about what was going on at our house, and intervened while I was still young enough to have a childhood.

I’d like to say I wish things could have been more “normal” for us, but I’m afraid I don’t know what “normal” is, or if it even exists. A very wise person once told me that “normal” is a setting on your dryer, and I concur with that assessment.

I wish my older brother and I had done something to help him. But we were terrified. And I was just a little girl.

To touch on “XXXXXX’ ” post, it wasn’t just the TV. After my brother was asleep for the night, which was very early in the evenings, we had to converse in whispers, and tip-toe around. Heaven help us if we woke my brother up.

I hope this was helpful, but somehow I doubt it. But thank you for letting me get some of that off my chest. Been carrying it with me for a very long time.”

Please understand that I do not mean to stick a tongue in a sore tooth with my posting here. (Although I have indeed been labeled troll on more than a few occasions I do not post on boards like these just for the sake of stirring the hive and watching the bees boil out; some aspects of raising a child or being a person with a condition like AU or MR or whatever are truly beyond unpleasant and pretending they are not there does nothing to solve the dilemma.)

I am sorry if I have triggered a bad memory or otherwise upset you. I could almost have written your very post, not from personal experience, but from the experience of a good friend who likewise grew up in a house under siege from not one but two MR siblings. I can’t help but wonder, were I to post this thread on every single messageboard like this one on the net, would I be able to tell the story of a hundred others I have never met? A thousand? A million?

I look down at my boy lying asleep next to me in the bed and I find myself unable to feel anger or pity or hatred or loathing towards him. Had we been able to know before he was born that he would be autistic (I firmly believe that the seeds were set while he was in utero, but that the damage was really done on the first day of his life) I would have argued vehemently against arborting him as a defective child. (I cannot and willnot speak for everyone and I will never attack someone who does not make the same choices I would make; ability to cope is a personal matter. I will unabashadly state that I am most definately pro-life, that I feel every human is worthy of life and compassion and a chance to improve. I will however attack those who try to enforce third-party views, like Peter Singer, who make thinly veiled promotion of eugenics in the interest of protecting society.)

I look at my boy, my beautiful redhead, and I am torn between my love for him and my love for my other children, his siblings and housemates who all have the signs of being damaged by my boy. The article posted so far above represents an extreme experience, a sort of “Mommy Dearest” personal history. Certainly her family was dysfunctional, but then I think a great many familes are so in some fashion or other. (Is any family like the ones on the idiot box, the Nelsons, the Petris, the Bradys, the Huxtables? Or are many more like the Bundys and the Simpsons?)

Some of the longtime posters here may recall a piece I wrote several years back about a pair of boys I knew as a middle schooler, my first encounter with autism (although they were not called that then, they were simply retards). I sit and sift thru the foggy memories from 30 years past and how their older sister was so ashamed of them, never had anyone over to the house, how she hated the toilet that was in the side yard they would use when they were outside (they lived well out of town, and the toilet was like you would find at a camp, over top of a pit which would take forever for two autistic boys to fill). Petey is in jail now, for crime he could not help but commit, when what he really needed was help as a child to overcome the worst of his autism; he will get no parrole, only whatever treatment by guards and fellow inmates a smaller than average, moderately autistic individual will receive.

Some will also recall my post about a boy I met named Eric. Eric is not doing well. His parents are overwhelmed, the school system is worse than f*cking useless, it is actually making him worse, and I do not see anything ahead of him except for some form of lockdown residential where the staff are paid minimum wage and believe me you get every nickel’s worth of care. Eric’s parents have tried every “snakeroot oil” treatment that has come up and none have worked. They are very tired, almost shellshocked and for the most part have given up hope.

I have another friend, the daughter of a co-worker whose oldest child was damaged by an assault on her when she was pregnant (which was never prosecuted) and left profoundly retarded and almost completely helpless. The drs. tried to talk Mom into letting them kill Crystal, but Mom said no. Crystal, despite having almost zero chances of survival is 11 now, still helpless as a newborn, but displaying personality that Mom was told she would never have. I look at the seige I have lived under and it is nothing compared to what Crystal’s mom has survived, and she is able to laugh and live and has even found a halfway decent man who accepted the responsibility of being Dad to Crystal (we need not fear a replay of Soddom, for there is at least one worthy man amongst us.) I think of this family and it makes me realize how lucky my own has been.

I do however think that my typical children have been affected by my boy’s consition in a way that is not subtle, and which may take years for them to unravel when the leave the nest (which will not be long from now for the two oldest, both of whom are srs. in h sch. next year and both of whom will most definately be “outta here”). I do not feel sadness for myself; my boy has changed me for the better, turned me from being a self-absorbed hedonistic idiot like so many around us (make no mistake, I am neither a hero nor a saint; but I do have a decidedly different outlook on life now than I did before his birth).

I think of those around me, but real-time and cyber, I think of my own “damaged” children both Spectrum and nt, and I feel a very deep sadness for the difficulties life has given them with the toss of the dice. I find moments of great joy, and as I have said I very often feel lucky (I could have been born a Palestinian living in Gaza, I could have been born a Black Christian living in the Sudan, I could have been born an indiginous Guatamalan…). Still, despite my optimism and my never ending hope of improvement in my boy, I will not lie and say that life for the last decade has been anything but extremely challenging, often frustrating and sometimes very, very hard.

As I interract with families and persons on Spectrum I am also often filled with a slow-boil anger. Anger that we continue to face the very same obstacles that we and others have faced before. Indifference from bureaucrats who are supposed to be providing social services. Obstinance and aggression from the public schools, whose answer to inadequate funding is not to link arms with all players and force the politicos to pony up what is needed but instead too often to beat down the families of the very clients they are paid to serve to force the “trouble makers” to go away. Worst of all is the 3 card monte our “esteemed” PhD’s and MD’s play with the numbers, trying more to cloud the issues surrounding cause and cure and even incidence. They are like the hydra; you defeat one false argument they present and they sprout two more rather than rock the boat of status quo or admit perhaps they made a mistake.

There was an article in the Times about 6 weeks ago about a Congressman from Alaska who used his position as Chair of the House Transportation Committee to funnel money to his state (yes, they all do this and yes, they will all continue to do so.) Part of that package of pork was a pair of bridge project that linked an area of very low population with an area of no population. The first one cost $200M and the other $500M. Do you have any idea what could be down with nearly 3/4 of a billion dollars? How many families could be helped? How many lives could be improved? I expect pork, but my God! what collossal waste these bridges represent! Even the people living there do not want or need them; they have very good ferry service that will actually be faster to use than the proposed roadways.

I appologise for my digression and I am afraid I have done more to cloud this thread than not. I am still digesting the basic premise. Perhaps what I need to do is get the book in question and slog thru it before I am ready to give my thoughts on topic.

It is Saturday my friends. I hope your weekend is a good one…

Dad wrote:

“I am sorry if I have triggered a bad memory or otherwise upset you. I could almost have written your very post, not from personal experience, but from the experience of a good friend who likewise grew up in a house under siege from not one but two MR siblings. I can’t help but wonder, were I to post this thread on every single messageboard like this one on the net, would I be able to tell the story of a hundred others I have never met? A thousand? A million?”

Not to worry, Dad. You haven’t triggered a bad memory, and I’m no more upset than is the usual for me. It’s always there, in the back of my mind, stored away and locked up tight, where I always hope it will stay, but it never does. If I sounded too emotional in my post, I am sorry, but I’m an emotional woman. It isn’t your words, it’s me.

At the risk of sounding self-absorbed myself, it is actually a relief whenever I am reminded that I am not alone. When I was younger, I used to truly believe that we were the only ones, my older brother and me, who suffered this kind of situation throughout our miserable childhood. Then, when I was 28 years old, and my older (nt) brother passed away at a young age, I really understood what alone was. Now these memories that continue to haunt me are indeed mine alone. My younger brothers and sister don’t remember how it was with my mother. And I welcomed the chance to tell part of my story “one more time”, which is probably only the third time I have ever told it. Kind of like “purging the demons”, yes? But they still don’t go away. And it feels like no one understands me, and if I am damaged, well, I imagine many are worse off than I am. I realize that I have also been blessed with some very special moments in my life, fleeting as they are, that do help to counteract the bad memories, and I am thankful. Funny how the bad still won’t fade though, isn’t it?

I am sure that your situation with your family is nothing like how it was for us. Please take some solace in that if you can.

I have more to say on this topic, but not sure if I should say it, and I am out of time now anyway.

I hope you have a good weekend too.

I must say this is one of the most distubing threads I’ve ever read!!! No human being is “damaged”!!!We all have abilities and disabilities.Been There, your brother wasn’t the “problem” in your family. Your parents were! They couldn’t accept the fact that they had produced a child that wasn’t perfect. None of us is perfect. No matter what , all human beings deserve love and respect and dignity.Your parents obviously needed psychiatric help to deal with their own inadequecies. I feel for you and your poor brother who was shunned because he wasn’t “perfect”.Most of the population comes from dysfunctional families.I know I did and after yrs. of therapy I’ve learned to deal with it. You either decide to make the best and learn from a situation or get mired down and wallow in it. We are all given obstacles in life and it is how we deal with these that defines our character. My grandmother that had alzheimers lived with us and yes, we had to take total care of her and never leave her alone. We did this and didn’t complain because it was our responsibility as family members. My grandmother lived this way until I was in my early 20’s and I and my mom never felt she was a “burden”. I feel taking care of her influenced my life for the better. I became a nurse and worked with geriactric pts. for many yrs. You see you have to take what is thrown at you and make the best of it.I tell my son when you are a member of a family you have responsibilities and everyone has to share the good and bad. That’s just part of being a family! Sorry to go on and on . Needless to say I won’t be reading this book!! Jan

I also reacted negatively to the word “damaged” even when applied to severely disabled children. There are kids who are *brain* damage or have such severe physical issues that they are physically “damaged”.
I have worked with such kids, though and neither their families nor anyone working with them called them “damaged”. (There was though a PT, I think, who used to call very severely disabled CP kids “banged up babies”. However, she was so caring with both kids and families that no one was particularly upset by her fairly extreme directness.) Perhaps
that ‘s the difference I sense. The author, well I never read the book, but I was not struck esp. by his caring for the kids, families or siblings. The cases he describes are, it seems to me, extreme ones. I have assisted in organizing activities for siblings who expressed many concerns (this was in a program for severely multiply handicapped kids). In no case was the kid left to care for his or her sibling at a young age or put up with some extremes (like having to sleep in urine soaked sheets). But the kids had normal concerns. There HAVE been other books written on the subject, and we were doing these programs back in the 70s. Go look on Amazon
for some alternatives. BTW, the whole fact that he is a psychoanalyst makes me a bit suspicious. Didn’t that go out way back when?

—des

Jan and des,

If you will reread what I wrote, you will see that I too blame my parents, specifically my mother, for our childhood situation. Please also remember that this happened over 30 years ago. Do I wallow in it regarding what happened to my MR brother, and to my NT brother and me for having to live with what I believe to be an atrocity? No, I don’t. I never talk about it. Did I call my brother damaged? Absolutely not. I simply recounted part of my story, all of which is true. I’m not going to restate everything I said in my posts, but my answers to the question “what do you wish your parents had NOT done, or what I thought was unfair” all concern the horrendous mistreatment of my MR brother, not my NT brother and myself. We were just little children. But we could still see that what was going on in our home was very wrong; we just couldn’t do anything about it. It was the late 60’s, early 70’s. I wish that someone (an adult) would have noticed that there was something VERY WRONG going on in our house, someone who could have done something to HELP my brother. No one ever did. My parents took great pains to make certain no one knew.

Another thing: All the therapy in the world does not make some memories go away. I have been in and out of therapy, so I do know what I’m talking about. I will not go into specifics of how my MR brother was mistreated. Just know that it was traumatic for all of us.

I am not now, was not then, and never will be ashamed of my MR brother. That was all my mother. She believed, and still does believe to this day, that it was HER FAULT he was born that way.

I did say that it was not my intention to offend anyone, and my apologies if my story is offensive. It is true, however. But because a topic is offensive doesn’t mean we should ignore the facts of it. As Dad touched on, my story, or something similar to it, has occurred what, a hundred, a thousand times over?

All that said, I doubt that I will be reading that book either. I’ve already lived it. It is scary that I’m not the only one who has.

That was me, “been there”, above.

I would really like to read “victoria’s” comments regarding this topic. Her perspective is always unique, yet so well-grounded.

been there, I have respect for what you have written and great sympathy for your having had that burden as a child. I didn’t see a single thing offensive in your post. You have had a lot of heartache. I hope you can find peace and joy in your life now.

Dad, my hat is off to you for valuing the life every child. Thank you!

Janis

My opinion was requested but honestly, there is little I can say that hasn’t been said. My family has a whole different package of dysfunctions.
As a child, I had little contact with MR kids; there was one girl that our parents tried to get us to play with — she was about twelve and my friends and I were about eight, and I have to admit we avoided her because we just didn’t feel there was anything we could share. Our old-fashioned social standards did help some because we just hid from her; if we had name-called or anything of the sort we would have caught holy &8^^ at home. There was a boy stuck in the back of my Grade 3 class too but we had little to do with him either; nobody really knew what to do. I do notice that we had a couple of MR kids, a deaf kid who had been mistakenly diagnosed MR, a polio victim in heavy braces with crutches, and various other “different” kids around the neighbourhood. It was not a hush-hush situation, and we weren’t allowed to pick on any of them at home or at school; old-fashioned etiquette does have its purposes.
The people who posted above cetainly seem to be making the best they can of difficult situations and more power to you all.

Obviously this topic has affected me, and Dad, I apologize to you for monopolizing it. I do have one more thing to say, for now, and it’s regarding the people who think that therapy can “cure all things”. Well, it can’t.

At the risk of being corny, I’ll quote a line from the classic movie Forrest Gump. The character Jenny, as an adult visiting her hometown, throws several rocks at her former home, where she was abused as a child, and then collapses in tears. Forrest Gump says “Sometimes I guess there just aren’t enough rocks”. That is exactly what it is like.

>[quote=”Anonymous”]Jan and des,
If you will reread what I wrote, you will see that I too blame my parents, specifically my mother, for our childhood situation. Please also remember that this happened over 30 years ago. Do I wallow in it regarding what happened to my MR brother, and to my NT brother and

My comments had nothing to do with you. They were in reaction to the book title and perceived author’s attitude. I have no doubt that what you say is true and did happen. And no doubt that having a disabled sibling has a big impact. My sister has yet to “forgive” me, and I was pretty mildly disabled in the whole scheme of things.

I am sure some pretty awful things really do happen but I do think they are the extreme and not the typical, however having a disabled sibling, particularly one who is very seriously impaired takes it toll in the best families (and who has those ? :-))

—des

Been There, I certainly didn’t mean to blame or accuse you! I referred to “Damaged Kids” in regards to the book and NOT you. I know you have lived thru a terrible ordeal and I am not making light of it in any way. I also don’t think therapy cures anything. At best it can give you ways to cope with whatever the situation is. Of course you will never ever forget what happened but one day I do hope you can find peace. Please forgive me if I appered to be unsympahtetic. I truly am both sympahtetic and empathetic. Jan

Jan and des, no problem. Perhaps I am overly sensitive. Thank you for your apology anyway, Jan.

That was me right above…

Several of the posters on this thread are so offended by the word “damaged” being applied to the disabled child in the family. I can certainly undertstand that, although I think there was a slight over-reaction, i.e. refusing to even consider reading the book.

But consider this: why not read the book, or really contemplate what life has been and is like for your nt children, if you have them? It seems to me, that if anyone could be labeled “damaged” in these situations, it would be them.

I think a lot of parents are in denial about the lives of their Normal Siblings. They have so many issues with their atypical child that they already feel guilty about, justified guilt or not, that they refuse to take on any more guilt about their Normal Children.

The strong reaction to the term damaged is a good point like the above poster said. It’s just a word to identify the atypical child. No big deal. But to refuse to even entertain the idea that the Normal Siblings suffers A LOT because of living with an atypical sibling to me suggests denial, defensivness, head in the sand mentality.

Then when one of us Normal One expresses difficulties about being the Normal One they get shot down with insensitive comments like, “No one’s life is normal. You should be grateful you weren’t your brother. You had it easy.” Those are exactly things the parents said to the Normal One growing up. We’re supposed to be able to take anything that is dished out, witness bizarre disturbing crap like it’s no big deal, told to behave in ways that are not normal, lie, be pushed to the side, ignored, silently take the abuse from the atypical sibling, be left alone with them when it’s wholly inappropriate, and watch our college money go to their appointments, their special schooling, their lawyers, their doctor bills, their therapists, etc.

And then people say, you’re whining. If my brother did to a stranger what he did to me, there would be criminal charges.

To the Guest above,

I learned at a disturbingly young age to keep my mouth SHUT. As I have said, my older NT brother and I spoke about how WRONG our situation was, in whispers in the dark. One of my mother’s favorite sayings to us, lest we whine about, well, anything, was “But for the grace of God, that could be you,” and point to my MR brother. What a sick thing to continually say to a little child. I could go on and on, but won’t. Let me just say that this comment of yours struck a raw nerve:

“If my brother did to a stranger what he did to me, there would be criminal charges.”

I will add one more thing, though. If people knew what my mother did all those years ago to my MR brother, she would have spent her life in jail.

Guest, whomever you are, thank you for having the courage to say the things you did. I was trying very hard not to offend anyone, but you are right. You said it all.

Delphine,

Again , many of us on an LD board have kids who are only seen as “disabled” in school work….LD=learning disabled. My child is very “normal” socially. There are many more books I could read that would more greatly benefit my children. I am sure there are some whose situations might make that book useful to them, however.

Janis

Janis,

You say that your child is “normal” socially, and only LD when it comes to schoolwork.

I respect that, but must point out I don’t like to use that word “normal”. I mean, what exactly is normal anyway? I’m sure I don’t know.

You also say that there are many more books that you could read that would better benefit your children. Does your LD child have siblings then? Are you positive that this book, or one like it wouldn’t be beneficial to your nt children?

I only ask, because I’d like to know why the idea of this book is so unpalatable to so many parents of LD children who have siblings.

One of the big mistakes that people make in forums like these is the assumption that all parents are like those of us who inhabit places like this. The parents who frequent these type of internet forums tend to be proactive, seeking answers to their problems, sharing resources and ideas, helping each other as we help ourselves.

Unfortunately, we are only a percentage of the parents who have “other-than-typical” kids (how’s that for a PC term?).

What about the OTHER parents, the ones who are defeated or callous or angry or bitter about teh hand life has dealt them? We parents here often get so indignant when teachers and other professionals post opinions or vents about parent-spawned problems (parents in denial, parents with outrageous demands, parents who cannot be bothered to participate, parents who do not help the situation) and we very often jump in with both barrels to blast them. We often fail to appreciate that these professionals often only know what they experience firsthand, and in some locations more so than other the “bad” parents greatly outnumber the “good” parents.

And in this particular line of inquiry, the Caliban Syndrome, it is not as important to the typical children whether THEIR damage is caused by having a “special” sibling per se, or because their parents (or society as a whole) is dysfunctional. To the typical children who life may be a varying stage of upset, unrest and even hell, all that is important is the fact that their lives are significantly different in a detrimental way from others around them.

Some people will put on the rose shaded glasses of optimism and insist that no child is damaged. This is not true.

A child who suffers from a pattern of systematic abuse, whether verbal, emotional, physical or sexual is indeed damaged. A child who suffers a serious injury is damaged. A child who is exposed to toxic substances in utero ot after birth that materially alters their metabolism, neurological processes or physiology is damaged.

And a typical sibling whos psychological, emotional or or other trauma as a direct result of life with a difficult child is damaged.

My boy has been difficult. We have had to make some pretty profound changes to our lives based upon his needs. We have not been “bad” parents (I am not saying we have been the best parents, I am not saying we could not have been better parents, I am not even saying that we have been “good” parents, just that we have not been “bad” parents.) I see some degree of Caliban in my oldest two children, who briefly knew life before my boy and who have had their lives impacted in an often less than optimum way because his needs usually take precedent over their own.

For the last 8 years (since my boy’s autism has been profound enough to set him apart from the herd) we have lived under seige, virtual prisoner’s to his condition. We do not do things that typical families do. For example. we do not go on vacation - my boy is too difficult to handle in strange surroundings, we do not have the werewithal to go places like the beach, etc. and no one sits for him twice. We do not treat ourselves to pleasant “toys” - he has a tendancy to mar or destroy things like electronics, things like trampolines or pools are a major danger to him, etc. We do not have much discretionary money - nearly all of the money left over after the bills has gone into him.

Were he an only child, this would be a non-issue for us. The sacrifices that the parents choose to make are theirs to do. But is it fair, proper or justifiable to also force typical kids to make the same sacrifices? A very unpleasant line of questioning I will freely admit. That does not mean it is not a valid question to pose…

I do not blame parents alone for the Caliban Syndrome occuring. SOme parents are indeed absolutely horrible (I have met more than a few parents of children with handicaps or conditions or syndromes that I just wanted to grab by the shoulders and shake). Part of the problem is a network of social service providers, including the schools, that is overwhelmed, underfunded, under-staffed, often ill-trained and sometimes lead down te wrong paths. These agencies need help if they are going to proactively help their intended clients. And at the bottom of that problem lies money (whether we wish to acknowledge it or not.)

I would gladly give another 25% of my wages to taxes IF I could be assured the windfall would be spent providing appropriate services to increase the recovery of children with extraordinary needs. I am sure many of us here would do the same. But we are a small percentage of the total population of the US (2000 Cenus says 1 in 12 children in the US is considered disabled, including a great number of children with milder conditions; that is still less than 10% of the total children, and these days there are a lot of households with no children at all, making households with a disabled child a very small percentage).

In the end, our society as a whole is as much to blame as any other single factor. We value tall, leggy blondes with big boobs over an average woman with average looks who will patiently work with a disabled child. We value a tall, skinny man who can throw a ball throught a hoop on a ten foot pole over a short, average looking man who will help families in need navigate the process of getting SSI. We value a woman who is gifted with a beautiful voice over a woman who will give respite care to a child who most people will never consider sitting for. We value persons who engage in predatory business practices over people who engage in philanthropy.

Yes, dysfunctional familes very often can cause the Caliban Syndrome in the typical siblings of extraordinary children. Families do not work alone. The public schools, the social service agencies, our medical community, indeed or very society is also dysfunctional as well. The only good news is that we truly do have the best system in the world, here in the US (based upon the numerous conversations I have had about life “with autism” with parents from Europe, Australia, Japan, India and South America). Of course, saying we don’t suck quite so very bad is really not much of a brag, is it…

I will read this book, difficult and unpleasant though it might be. My only hope is that when I do I do not find I could have written it…

“And in this particular line of inquiry, the Caliban Syndrome, it is not as important to the typical children whether THEIR damage is caused by having a “special” sibling per se, or because their parents (or society as a whole) is dysfunctional. To the typical children who life may be a varying stage of upset, unrest and even hell, all that is important is the fact that their lives are significantly different in a detrimental way from others around them. ”

Thank you, Dad. My life has been a hell, and dare I complain about it, I’m actually supposed to feel guilty. And you know what? I do. I do feel guilty about it, whether it is logical or not.

“Some people will put on the rose shaded glasses of optimism and insist that no child is damaged. This is not true.”

“And a typical sibling whos psychological, emotional or or other trauma as a direct result of life with a difficult child is damaged.”

And thanks for having the courage to speak the truth, and actually post it on this board.

Delphine,

Let me see if I can make this more clear. I have a master’s in special ed. and deal mainly with children with reading and language disorders including auditory processing disorder. I primarily read books in those areas and those areas happen to also apply to my youngest child. So I get double benefit from my study of those topics.

There are millions of books out there that might be very interesting and informative that I’d read if and when I had time…autism, sensory integration, visual-motor, hyperlexia, Asperger’s syndrome, ADHD, mood disorders, other psychological disorders, visual impairment, and the list goes on.

I have already stated after Dad explained more about the specifics of the book in question that I have sincere sympathy for those in that situation, but it is not personally applicable. There are many books higher up on my list of “would like to read someday”. When you don’t have unlimited time, you just have to choose the most beneficial books to read. I read ZERO fiction. I fully realize that there are those whose children have severe conditions which cause all kinds of upheaval to the family and perhaps they might like the book.

Sorry you did not like the word “normal”. I used it thinking it would be understood to mean “functioning within a range that would not indicate any special intervention or remediation is desirable or needed in any way”.

Janis

I don’t wish to be insensitive but I think that Janis’ statement that most of the discussion here would be about those with *learning disabilities* is inaccurate. It IS a forum about learning disabilities, so what would you expect! So I think it is rational for people here to react to a book title discussing “damaged children”.

It isn’t that any other discussion is not ok, or allowed, etc. But I also dont’ think there is any evidence that people here woudl have a higher incidence of severe disabilities than anyone else. It might be so but I have never seen it.

That said, there are obviously people whose lives are touched, as “Been there” and “Dad” is by people with severe disabilities. I can’t pretend that I would really understand that, even though I have worked with kids and families with severely disabled children.

BTW, I continue to be troubled more by the attitude and words of the writer of the book. I have no trouble believing that anything he says is true or that many siblings have been thru hell, either caused directly by the parents (as one case I heard of where the severely disabled kid was that way due to Rubella, and the sibling was constantly reminded that he brought home Rubella!!) or just from the more severe stresses that such a family would go thru.

—des

The normal one: Life with a difficult or damaged sibling

Jeanne Safer

Psychotherapist Jeanne Safer, author of The Normal One: Life With a Difficult or Damaged Sibling, discusses the effects that siblings with disabilities or difficulties have on their “normal” brothers and sisters.

The silent sister

Nobody knows I have a brother. My best friends never hear his name. He has always been a source of embarrassment and discomfort for me, but I’ve never wondered very much about his impact on my life. Being his sister feels vaguely unreal and irrelevant; my destiny has nothing to do with his.
This is astonishing, because I am a psychotherapist who has spent years trying to understand my own and my patients’ childhoods. Somehow I’ve managed to erase my own closest relative.

I am not alone. Beyond slogans (“all men are brothers,” “sisterhood is powerful”) and the occasional soft-focus picture book, shockingly little attention is paid to siblings in general, much less to troubled, difficult, or disabled ones. And although millions of people have such relatives — 85 percent of Americans have siblings, so few extended families are exempt — practically nothing has been written about them. Worse, little has been thought about them; newspaper headlines (the Kaczynski brothers, wayward presidential siblings), literature (Dostoyevsky’s The Brothers Karamazov, the plays of Williams and O’Neill), the Bible (Cain and Abel, Joseph and his brothers), and the dreams of their higher-functioning brothers and sisters tell their story, not psychological research. Their influence is intensified because it is so hidden, even in a culture where people willingly expose the most intimate details of their lives.

The purpose of this book is to reveal the neglected, lonely, and lifelong trauma of growing up with an abnormal brother or sister and its effects on personality and society; the reality of the lives of the “normal ones” is far more complex than the sentimental image presented by the media and even by their own families. It examines the world all such siblings share, whether the disability is mental or physical, minor or catastrophic, ignored or overemphasized. It analyzes how and why their influence is repudiated, and offers remedies.

Normal ones suffer from a psychological condition I name “the Caliban Syndrome” after the brutal, repugnant slave of the magician Prospero in Shakespeare’s The Tempest, the not-quite-human creature who tried to rape Prospero’s flawless daughter Miranda. Caliban is the “thing of darkness” Prospero must accept at the play’s end. Because a damaged sibling is always a disavowed part of self, I believe every intact sibling must come to terms with the Caliban within in order to become fully human. Understanding the influence that such a sibling inevitably has on one’s destiny is an essential — and frequently avoided — task.

Whatever their relationship in the external world, damaged siblings loom large in the internal world of their normal brothers and sisters, as manifested in the four symptoms of the Caliban Syndrome that this book examines:

Premature maturity

Survivor guilt

Compulsion to achieve

Fear of contagion

The Caliban Syndrome has an impact far beyond the immediate families of the disabled and the difficult. These relationships are an exaggeration of the dynamics of every sibling relationship, which like every other human bond always has its dark side. Disconnecting internally from unacceptable aspects of a sibling is as universal as the primordial emotions these relationships evoke, and we pay a price for amputating them.

Without acknowledging hate and repudiation, we can never truly love ourselves or anyone else; superficial assertions that short-circuit the full intensity of these prohibited emotions never work. Neither does professing spiritual uplift or sugarcoating the lifelong rigors and frustrations of having your closest relative never be your peer. Acknowledged or not, growing up with a difficult or damaged sibling is one of the defining experiences of a person’s life.

Needing advocates

The disabled and their parents have much-needed advocates; until now their siblings have had practically none. In their behalf, I take issue with the current politically correct euphemism “special needs” children because I believe that all children have special needs. Compassion for the extraordinary trials their families endure and admiration for their achievements should not blind us to the damage done by ignoring the toll on their normal siblings.

I use the terms normal, abnormal, intact and damaged not to make value judgments but to reflect more accurately the point of view of higher-functioning siblings, who typically live in an environment that requires them to suppress taboo emotions, judgments and the evidence of their senses. Idealizing their lives as somehow ennobling, and concomitantly denigrating and denying that there is indeed such a thing as normality (with all its contradictions and complications), damages everybody and leads to dangerous self-estrangement in society as a whole.

No one with an abnormal sibling has a normal childhood. Consciously or unconsciously, every intact sibling is haunted by the fear of catching the disability, a fear that always has a modicum of psychological truth. Family gatherings and significant events become occasions for anxiety and suppressed shame.

Cheerful caretakers, mature before their time, they are supposed to consider themselves lucky to be normal. They feel tormented by the compulsion to compensate for their parents’ disappointments by having no problems and making no demands, and they are often unaware of the massive external and internal pressure to pretend that nothing is amiss. Their success is always tainted by their sibling’s failure, their future clouded by an untoward sense of obligation and responsibility. Their goal is to be as different from their sibling as possible. They live forever in the shadow of the one who does not function.

It is not my intent to create a new category of victim; the Suffering Olympics already has a surfeit of contenders, and I believe passionately that defining yourself as a victim — no matter what you have endured — is the opposite of insight, and actually perpetuates the ordeal by cutting off the possibility of integrating and overcoming it. In fact, one of the most striking characteristics of these siblings is their lack of complaint and their tendency to hide from themselves the burdens that their very normality has placed on them. I want them to know and others to appreciate what they, and those like them, experience.

The book begins with the story of my relationship with my own older brother, who was emotionally troubled from childhood on and also became seriously ill as an adult. It reflects the guilt, the grief and the self-knowledge I have gained from my ongoing struggle to overcome my resistance and acknowledge his significance in my life.

Sixty other “normal ones” aged 17 to 75, whose brothers and sisters range from microcephalic to highly obnoxious, tell the poignant, often secret stories of their lives. They also report their powerful and revealing dreams, which have never before been systematically studied for clues about their hidden inner world.

Having a damaged sibling marks you. No matter what you achieve, where you go, or who you love, that other’s life remains your secret alternative template, the chasm into which you could plunge if you misstep. Whether you know it or not, his is the doom you dare not duplicate, the fate you contemplate with shame, guilt, secret envy and — always — relief. You are ashamed that you are related, guilty that you have a better life, envious that nothing is expected of him, relieved that you are not the misfit to be scorned or pitied.

Because a sibling is your closest relative, you are eternally enmeshed with each other. Your sanity and stability are forever suspect. You can consciously disconnect your destinies, but you cannot sever the fundamental tie because it embodies the disavowed part of your history and character with which you must come to terms or never truly know yourself.

About the author: Jeanne Safer, PhD, is a psychotherapist who has been in private practice for almost three decades. A supervisor and faculty member at the Postgraduate Center for Mental Health and the National Institute for the Psychotherapies, Dr. Safer lectures on the inner life of men and women, has appeared on television (The Today Show, Good Morning America and as a psychological expert on The Montel Williams Show) and radio and has contributed articles to The New York Times, the Washington Post, Self, Fitness, and Cosmopolitan. She is also the author of two previous books, Beyond Motherhood: Choosing a Life Without Children, and Forgiving and Not Forgiving: Why Sometimes It’s Better Not to Forgive. Both Beyond Motherhood and The Normal One were finalists in the Books for a Better Life Award for the year’s best self-improvement books. Dr Safer lives in New York City with her husband, historian and political journalist Richard Brookhiser. Copyright (C) 2002 by Jeanne Safer. Reprinted with permission. All rights reserved.

People Tell Their Stories:
Family and Relationship Issues

Interview with Jeanne Safer, Ph.D., author of The Normal One: Life With A Difficult or Damaged Sibling (Delta Trade Paperbacks, New York, 2003)

Jeanne Safer, PhD, is a psychotherapist who has been in private practice for almost three decades. A supervisor and faculty member at the Postgraduate Center for Mental Health and the National Institute for the Psychotherapies, Dr. Safer lectures on the inner life of men and women, has appeared on television (The Today Show, Good Morning America and as a psychological expert on The Montel Williams Show) and radio and has contributed articles to The New York Times, the Washington Post, Self, Fitness, and Cosmopolitan. She is also the author of two previous books, Beyond Motherhood: Choosing a Life Without Children, and Forgiving and Not Forgiving: Why Sometimes It’s Better Not to Forgive. Both Beyond Motherhood and The Normal One were finalists in the Books for a Better Life Award for the year’s best self-improvement books.

Who is a “Normal One”?

A “Normal One” is any person who has a brother or sister with serious mental, physical or social problems. These problems can range from disabilities like mental retardation, autism, ADD/ADHD to antisocial behavior or drug addiction or physical illness. Often the disorder is undiagnosed or undiagnosable (particularly when it is emotional,) but still significant enough to have a major impact on family life. Higher-functioning, healthy siblings are labeled by their parents, and think of themselves, as “The Normal One.”

If these siblings are so normal, why do they need your book?

Normal children need attention too, but they tend to get ignored because their siblings’ more overwhelming and dramatic difficulties take precedence. Parents expect them to take care of themselves, to assume responsibility for their siblings, to have no problems, and never to complain. They are told to “count your blessings,” and assured that their trials will “make you stronger.” As a result, they often feel invisible, guilty, ashamed and driven. I call this “the burden of normality.”

What makes your book different from other books about siblings?

The Normal One is the only book for intact siblings written by a practicing psychotherapist who is a Normal One herself; I understand their psychology personally as well as professionally. My own life experience has sensitized me to the hidden struggles and to the feelings that are overlooked by siblings’ families, by society, and sometimes even by therapists.

What are the most valuable insights Normal Ones and other readers will gain from your book?

Normal Ones who read this book will realize that they are not alone, that their emotions-even their forbidden ones-are natural and valid, and shared by many other siblings. They will understand how having an abnormal sibling has affected their lives and shaped their characters. They will recognize within themselves the four personality traits I name the Caliban Syndrome and learn how to combat the restrictions it imposes on them.

Every normal sibling harbors what I call “fear of contagion”-the secret anxiety that they, too, are or could become abnormal. Understanding the origins of this fear diminishes its destructive power.

How did you come to write The Normal One?

I remember the exact moment I realized that I had to write about siblings: I had just met with my agent about possible ideas for a next book, and nothing seemed right. Then, walking back to my apartment, the words of a dear friend and colleague came back to me and stopped me in my tracks: “Someday you’ll have to write about your brother.” I felt sick, scared and compelled, and started crying in the middle of the sidewalk. That’s how I knew the time had come. I dedicated The Normal One to her.

Since I wanted to understand other siblings’ experiences too, I interviewed sixty people whose brothers and sisters suffered from a wide variety of ailments and dysfunctions. Although I had known some of these people for years, we had never spoken about our siblings before; I didn’t even know they had siblings. What stories they told!

What was it like to write about your brother?

Even though I wrote The Normal One in order to come to terms with my brother, I dreaded actually doing it. The autobiographical chapter, entitled “My Brother, Myself” which appears first in the book, was the last thing I wrote. My biggest fear was that I wouldn’t have anything to say about him, since I have so few memories of our relationship. Why that was so was, of course, the story I had to tell. I had to face the excruciating truth, and my own shame and guilt about excluding him all those years. The night before I finally sat down to confront this suppressed part of my past, I had a nightmare about a flood in my office-a flood of feelings-that I describe and interpret in the book. That dream unlocked my memory. I wrote the entire section in six weeks, virtually non-stop.

What struck you most about the stories your subjects told?

I couldn’t get them out of my mind. People told me it was such a relief to talk about thoughts and feelings nobody had ever wanted to listen to before. They carry around such a weight of sorrow, anger, responsibility, shame and anxiety-about the past, about the future and about their own ability to function. Their damaged and difficult siblings haunt them.

Here are some of them:

A man who turned down his acceptance at medical school to “make a place” for his obsessive/compulsive brother to attend

A woman who saw her borderline sister homeless on the street

A woman whose paranoid brother tried to kill her

A woman whose sister is a mute “almost twin”

A man who cannot forgive himself for distancing himself from his drug-addict sister who then committed suicide

A man who torments himself about whether he should care for his reclusive sister after their parents die

A woman who had to fish her mentally ill sister out of the river

A woman who won’t marry because she believes no man will tolerate living with her retarded brother

A woman who is the only member of her family who is not mentally ill

What was your most surprising finding?

I had no idea of the power and the reach of the sibling bond before I wrote The Normal One. When I discovered the Caliban Syndrome, the personality constellation characteristic of intact siblings, in myself, I understood what a central role it played in virtually every facet of my life. As I studied other siblings, I saw that few escape it.

How have readers responded to your book?

I am touched that The Normal One has struck a nerve for so many people, validated their experiences and given them permission to express taboo feelings. Readers tell me they feel consoled, encouraged, and understood. “Finally somebody knows, somebody’s listening,” one woman wrote, “you read my diary-you told the story of my life.” I got a call from a woman standing in the aisle of a bookstore, weeping with recognition as she read. One reader confided that she keeps her copy in the bathroom, with her favorite passages underlined in magic marker, and reaches for it whenever she needs to encourage herself that she deserves happiness. Some readers gave the book to their parents because it said what they could never bring themselves to say aloud; they felt the book was their advocate. I have also learned that pediatricians give it to parents, and that therapists give it to patients; sometimes, patients give it to their therapists. Nothing means more to an author who is also a psychologist than to see that her work touches so many and makes a difference in their lives.

What about negative reactions?

Nothing is exempt from misinterpretation, and The Normal One upsets some people. One man called a National Public Radio program on which I was featured to accuse me of setting care of the disabled back decades by advocating institutionalizing them indiscriminantly. Another charged that I encouraged selfishness and criminal irresponsibility in healthy siblings by questioning whether they had to be their “brother’s keeper” regardless of circumstances. Of course I do neither. Others objected to my use of “normal” and “damaged,” although I explain in my introduction that these words reflect the authentic feelings of the siblings themselves, not my value judgments. It’s always dismaying to be misunderstood, but it’s inevitable when your topic evokes passionate sentiments.

How has having written The Normal One changed your life?

The experience of confronting a buried chapter of my own history, one of the hardest things I have ever done, helped me recover feelings about my brother and parts of myself that otherwise would have been lost forever. I hope it will do the same for every reader.

Jeanne Safer, Ph.D., lives in New York City with her husband, historian and political journalist Richard Brookhiser. Her website is: http://www.thenormalone.com

http://www.news-medical.net/view_article.asp?id=1986

I have to tell you - I did not read this book, I am not happy with the word damaged, but I did look through the comments and this is why I’ve been staying away from these boards ever since it became impossible to chat about ADHD and meds. I don’t care how calm and delightful a parent you are, both the child with the disability and the child without are affected by the very dynamic of this difference. Of course not all the time, but regularly enough a child with “issues” behaves in certain ways that can be very irritating if you are not a saint and gets certain kinds of attention different from the other child. That is how it is. It doesn’t mean the other child will have serious psychological “damage”, but to deny that the family is affected in negative ways that have to be specifically addressed, sometimes with outside assistance, is ridiculous.

http://ericec.org/faq/siblings.html