Marcy Sheiner (mmarquest) Mon 14 Oct 02 12:34
Betsy, send your friendds to this conference--it's open to the public. I'm thinking about poorer and more populated countries such as Mexico and India; people with "deformities" are just a part of the landscape in these places. I only know from films and from what people have told me, tho. I have a feeling that differences of this kind are more accepted as a part of life, partly bc they are more common due to less medical care and more disease causing agents in the water and food. Then there are the countries full of people whose limbs have been blown off by land mines, or who have been otherwise injured in war. But not ridiculing someone walking on crutches is not the same as supporting the parents both emotionally and practically. The evolutionary theory still holds up even if the silence creates Susan Smiths, bc there's much less matricide than there would be less childbirth if women were really presented with the full picture of what motherhood is like on a daily basis. Even MY daughter, when she had her first baby, complained to me that I had not told her how hard it was. My jaw dropped open, bc it's my perception that I constantly talked about it. No, she said, all you talked about was 'the culture, the culture.' And I probably did, to cover up the personal part of my feelings so as not to make her and my son feel personally responsible for my distress. I guess that is another reason women don't talk about this--so as not to damage the children.
ccridge (ccridge) Tue 15 Oct 02 02:11
Your book, Marcy, caused me to review feelings that have been stored in the attic for 46 years or so. I was one of those, possibly like Bob, who looked at my new baby and fell into his eyes. It was the deepest experience that I had had in my 22 years. I was drunk with love. A few weeks later Diana said the doctor was wondering about the size of the boy's head and about how quickly it was growing. He would consult with others, the doctor said, and they would compare notes, and he'd get back to us in a few days or a week or some period of time. I don't know how long it was-- probably only a week. When he got back to us it was to say that they all agreed that the whole boy was growing rapidly, and nothing was wrong. In those days hydrocephalus meant a steady decrease in functioning and a miserable death. There were no shunts. Hydrocephalus was death. In the days we had waited, we had looked at our joyous child and could not imagine any way we could endure his degeneration and death. Years later when I read about successful shunting of the fluid into an infant's body cavity, where it would be dispersed without harm to the child, there was a celebration in my heart. I thought of the children who would grow up to be perfectly normal (although I guessed there would need to be more surgery as the child grew). I put hydrocephalus out of my mind. Reading the first chapters of _Perfectly Normal_ blew a hole in my happy dream of another illness overcome. The doctors thought so little of what they could do for Daryl that they counted him as good as dead, with their, "Don't worry, you can have another baby." What did they think you were? Stone? What about the baby you had? You were angry about the failure of Daryl's original shunt, but that may not have been clumsiness or malpractice. The procedure was new, and there were bound to be unforeseen realities, failures of technique, etc.. What I think was unforgiveable was the lack of follow-up. You should not have been the one telling the physicians about Daryl's continued symptoms, but they should have marked those symptoms themselves, and should have explained to you what they meant. (Which was a new shunt instantly.) I was sad about your lack of trust in yourself, your suspicion that Daryl's developmental short-circuit must have been your fault. What a hellacious worry! It makes me wonder if your family blamed you for bad weather and for the poorly sewn seams in your new store-bought dress. It seems from your telling that Angie was just the kind of friend that you would want, but in the middle of your misery, there you were giving the bathroom floor a meticulous toothbrush scrub, preparing for Angie's visit.. You must have thought that instead of renewing your friendship, Angie meant only to check out your housekeeping to see if you had lost a step. My wish was to post comments about _Perfectly Normal_ four days ago. I wish I had, I sense that I am out of step, but I'll be back.
Jonathan Kopp (jbk) Tue 15 Oct 02 08:37
On the contrary - what a thoughtful and generous contribution, ccridge. As you describe, with every pregnancy and birth, comes a very powerful fantasy, that of a healthy child, a natural and powerful emotional connection, and a lifetime of normal growth, development, achievement and relationship. When a child is born with disability, some unusual challenge or difficulty, the child's birth is accompanied by a death for the parents. The death of the fantasy of a "normal" child and childhood. Marcy, was letting go of this fantasy difficult? Were people understanding in giving you time to come to terms with this loss?
Marcy Sheiner (mmarquest) Tue 15 Oct 02 15:27
Huh? I STILL haven't let go of the fantasy!! I STILL catch myself expecting Daryl to do things he cannot do. I still get angry at him for things that he cannot help. It all stems from having my fantasy of a wonderful fairy tale baby shattered. Ånd as far as people understanding it--as I thought I had shown in the book, nobody understood a damn thing about what I was going thru, certainly not a concept as recently popularized as this one. ccridge, your post is wonderful in many ways, and very supportive . Yes, I was angry at the doctors for the failure of the first shunt at the time I wrote about it; now I know that they had no idea what they were doing. But in fact, as you said, when it did not work, the first doctor should have sent us immediately where he eventually did send us. Ådvice to anyone with any complex medical problem: go to a doctor associated w/ a teaching hospital in a big city. The big city is the most important part. NYC if possible. (I'm a NY chauvinist.) I really do think that every mother who gives birth to a child with a "defect" or whatever, feels responsible and guilty. Granted, I was raised by people who were pretty bad to me verbally and did not instil any confidence in me, and I was only 19 so had not had time to grow into my own image of myself--but I'm fairly sure this is universal. Have you ever heard of this family, I cannot think of their name now, but they have adopted something like 16 kids w/ disabilities; the documentary about them is called "Who are the D-----s and how did they get so many children?" Well, the mother , Mrs. D., says that the reason she thinks they do so well w/ these kids is because she did not give birth to them, and so she doesn't have any guilt. Implied in that is the truism that guilt is crippling, and that parents of children with disability screw up very easily and often bc they are plagued with this guilt, which leads to resentment, which leads to acting-out on the child, which leads to more guilt. A vicious circle. And again, probably only different in degree from the experience of most mothers.
Dave (drsmith) Wed 16 Oct 02 21:57
Very interesting, about that documentary and that family, Marcy. I hadn't heard of them. Yeah, guilt is such a powerful, er, something.. powerful drug, almost? It's almost comical, how guilt expresses itself in our family; it's as if my wife and I are in some sort of contest for who has more guilt. Our son is autistic, and autism has a strong hereditary influence, but we're not really sure how much of a role our genes played. So sometimes we find ourselves competing for the title of "It was MY genes who caused his autism." It almost feels like a contest for who has more street cred or something. (I'm probably making our situation sound worse than it really is. Our son has responded pretty well to therapy in the last couple of years, so I can't say we're all THAT guilt-racked at this time.) Another thing from the book that struck a familiar chord was the subject of discipline, or lack thereof. Something about a teacher asking how you disciplined Daryl, and you seemed to describe being a little baffled by the question almost. I think we haven't given our son enough discipline; do you think a lack of discipline sort of comes with the territory? I mean, there are times when he's doing something questionable, and part of me thinks "I should discourage that," but another part of me thinks, "Well, maybe it's just an autistic thing and I don't understand." Do you suppose that that sort of fear/uncertainty/doubt factor has a general tendency to cause parents of special-needs kids to be too soft on discipline?
Jonathan Kopp (jbk) Wed 16 Oct 02 22:05
Great question! And more generally Marcy, did you go through an internal struggle about how protective and/or induldgentto be with Daryl? Did you come up with any way to judge that that felt like it made sense? Does Daryl have an opinion on the matter, now that he's grown?
Marcy Sheiner (mmarquest) Thu 17 Oct 02 17:45
It's possible that I did not discipline Daryl because of his disability, but I've always seen my laxity more as a product of who I was at the time: an anti-authoritarian hippie. However, I have two friends who have disabilities, and I notice that I don't have very high expectations of them, and that I let them get away with stuff I do not accept from non-disabled people. The protective versus indulgent issue is real big for me. I have never known how to behave or what was rational and reasonable (How DOES one know? Anybody??) As a result, while I've been neglectful of my son, I have at the same time been a smothering mother. It's possible, believe me, I am the living proof. I still am overprotective. Daryl fights me at every turn. He gets mad at me whenever I exhibit motherly protectiveness. Recently I said something to him, I don't recall what, something like "be careful" when we were out in public, and he flipped out, and pointed out to me that I would never say that to another adult I was with. He is 37, remember. I feel guilty , as a matter of fact, because I sometimes think my overprotection prevented him from learning many things, for instance, how to ride a bike. I half-heartedly tried to teach him how, but I was just as happy when he couldn't seem to do it, and subtly encouraged him to give it up.
Jonathan Kopp (jbk) Fri 18 Oct 02 07:00
So are you saying, in part, that the powerful mix of feelings you had about being a mother, along with the societal disapproval of negative maternal feelings and reactions kind of threw off the instinctual compass you had about how best to care for him? Some- where in the book, you mention that you feel your suppressed negative feelings led to a series of "accidents," where Daryl got hurt, which you said resulted from your carelessness; other times you said you found yourself playing too rough in tickle-fights with him.
Marcy Sheiner (mmarquest) Fri 18 Oct 02 15:55
Yes. Interesting, isn't it? I was terrified of him getting hurt by riding a bike or anything like that on his own, yet I did things that resulted in him getting hurt. I don't know what you mean by "instinctual compass?" I never had one--do other parents? I described in the book the first time I was faced with what to do, whether to leave him alone with the other toddlers, or take him into the kitchen with me and the other women. I left him w/ the children and he got hurt. That was the first time. The last time a significant event of this kind occurred was when he was about 17, by which time he'd had fairly frequent seizures, tho they were pretty much under control with meds. He got himself a job with a construction firm, and they actually had him digging ditches in the hot sun by himself, far from anyone else; if he had a seizure-- and I've always felt they could be triggered by heat--no one would know or be able to help him. Of course he had not told his boss about his condition. I agonized over this, and then I called his boss, who promised to change his assignment. Instead, he fired him. Daryl did not talk to me for 3 weeks. Come to think of it, this guy could have been sued--but at the time, 1984 or thereabouts, I never thought of it. Writing this now I feel bad about the decision I made. At the time, I felt it was the right thing. I tried first to get Daryl to tell the boss himself. I was in a very difficult position, let's face it. Who knows what was right? How do other parents deal with these things? I read an article today about autism increasing hugely over the past few years in California, and nobody can figure out why.
flying jenny (jenslobodin) Sat 19 Oct 02 00:07
Marcy, I have nothing much intelligent to add just now, but do want to say that this is a good conversation. My stepmother was strongly censured when my brother was a kid, for being too indulgent AND protective; in fact she is STILL criticized for this post mortem - she's been dead for many years. My brother has cerebral palsy and suffered intense seizures as a child. A lot of this resonates with me because I saw how she dedicated her life to him, and how awful many/most people were to her about that. And what an angry woman she became. And how the doctors recommended institutionalising my brother, telling all about what he would never be able to do. Motherhood/Parenthood = Scary, lonelier than it should be.
Marcy Sheiner (mmarquest) Sat 19 Oct 02 08:23
Jen, you certainly did add something! My experience was as nothing compared to your aunt's. I have a friend in NY, Christine, who has a child, now in his 40s, who is mentally retarded with seizures. And I mean a dozen or more seizures a day. SHE has devoted her life to him, and had a similar experience to what you describe. She is very angry too, and also half mad. I adore her. Her life is beyond difficult, and few people help her, tho she lives in a supposedly close knit community--nobody wants to deal with it, and they use her personality as an excuse to stay away. Next to Christine, my experience was as having a "normal" child compares to mine.
Jonathan Kopp (jbk) Sun 20 Oct 02 10:19
I do think that some people have what they see as an instinctual compass when it comes to parenting decisions - though "instinctual" may be misleading, since probably some of it comes from their own experience being parented. I know I feel like I do - though that doesn't mean there aren't times of intense uncertainty, especially with teenagers. And I do imagine that having a child who is dramatically disabled in one way or another (understanding that Daryl is on the mild end of this circumstance) would make it very difficult to judge what risks to let him take. The new stats on autism are, indeed, alarming. We are discussing them in the Parenting Conference here on the Well. Marcy, have you been involved in the disabled rights movement - or has Daryl? What do you think of this movement? If you have been involved, what's your experience been?
Marcy Sheiner (mmarquest) Sun 20 Oct 02 16:15
Yes, I have been involved in the Disability Rights Movement--primarily as a writer. For awhile I was writing a lot about disability politics, culture and events, for local papers like the Bay Guardian, and for online venues on disability. I really love disability culture--it's very exciting and fresh, and also I feel very comfortable around the people who are involved in it. About two years ago I helped put on a memorial reading for Mark O'Brien, who was a poet/writer/activist and who, as a result of childhood polio, had spent most of his life in an iron lung. An enormous number of people came to that event, but as with most of these things, hardly any were not disabled. the "temporarily able-bodied" as they are called don't know what they're missing. I have also served on the board of the Hydrocephalus Association, written for their newsletter, and helped plan conferences. Daryl hand goes to the biannual conferences where he's met lots of people. One has become a good friend who he talks with and occasionlly visits--she lives in Seattle. He also usually accompanies me to shows and such when I'm writing about it. I haven't been writing very much since I got sick, and since the economy went south (much less freelance work available) and so I haven't been hanging out in disability culture. That's me--I never socialize unless I have a purpose!
Marcy Sheiner (mmarquest) Sun 20 Oct 02 16:17
Para 3, Line 2: I don't know where that "hand" came from--something I changed got screwed up. Sorry.
Coleman C. Ridge (ccridge) Mon 21 Oct 02 02:14
Of the things in the book that made me smile (and there were not a hundred of them) was when Darlene found out that she would have her skull cut, and she .asked for the phone and privacy to call Daryl. As she knew that her mother would not lie to her in your presence, she knew that Daryl would not lie to her. I think that we adults forget how much we counted on the wisdom and heart of our peers when we were children.. I think, too, that we undervalue the empathy.we had-- both for each other and for strangers. As adults we tend to think it is *cute*, as though the child is pretending to care, playing the role of being a little mommy or a little daddy. We do not like to think how soon it is that we count for little with our children. [For the story of it, at least, I hope that Darlene and Daryl were friends when they grew older.]
Marcy Sheiner (mmarquest) Mon 21 Oct 02 19:10
Oh, yes, they are still friends, tho they live 3000 miles apart. What you said is very interesting--I had hoped that did not come off as "cute," and felt it was important to put it in there. Actually, Daryl told me that all he recalls is her asking if it hurts when they take the stitches out. >>>>>We do not like to think how soon it is that we count for >>>>little with our children. I've gone thru this very intensely with regard to my daughter.Daryl still needs me and possibly always will (how I wish he would marry some wonderful woman!) but once Stacy fled the coop, I thought about how important my mother is in my life--not very--and it was painful to realize that that's about how important I'd be to Stacy. However, we are much closer than my mother and I are or ever will be.
Coleman C. Ridge (ccridge) Mon 21 Oct 02 21:56
Earlier today I went back to _Perfectly Normal_ and looked again at your account of Daryl's 30th birthday: Sure enough, Darlene was there. Once again I'd skipped a page or a paragraph and missed something that was important. It's a good thing that I don't have to take examinations any more. You characterize your book as a memoir-- the story of you and the tasks that you had to do (and did) loving and raising your hydrocephalic son. In the beginning of your story, you say it took you years and years to write the book-- that you would get stuck, put it away, take it out, write more, then get stuck again, put it away, and so on. Someone more dedicated to her 'look good' than to the truth-- someone like the 20-year-old Marcy, maybe-- would revise the first-written parts to reflect what she has learned in more than thirty years. You have not done that, and so the story is not a simple report of a passage in your life, but is the tale, too, of your spiritual growth. It is more book than I expected. Keep on truckin', Marcy. See you in the Well.
Coleman C. Ridge (ccridge) Tue 22 Oct 02 01:49
That sounds dismissive. Sorry about that. I mean that I doubt if I have more to say. But that's not true. I have so-called "benign hydrocephaly,' if there is such a thing, and I show a couple of scary symptoms. I'll ask about it when I see Dr. C. in the morning.
Marcy Sheiner (mmarquest) Tue 22 Oct 02 12:29
I've never heard of benign hydrocephaly. What is it? You do know the Hydrocephalus Association is in SF and has a website etc? If you need that info I will post it. Ålso, for the record, we do not say "hydrocephalic," which defines the person by their disorder. Thank you for being so generous in what you said about me and the writing. I actually started the book when I was around 32, and the first two chapters stayed very much the same as what you see now. And thanks too for saying it's "more book than I expected," tho I'm not so sure what that means--but it is reassuraing; since publication I've been feeling it's too short and too sparse, there is so much more i could have written, particularly about my daughter. I may revise it someday. It is apparently my life's work.
flying jenny (jenslobodin) Tue 22 Oct 02 22:18
I'm sorry to say I haven't yet read it, Marcy - cannot afford new books right now. I wonder if the library has it. Will check tomorrow, as I'm even more moved to read it sooner rather than later thanks to Coleman's posts. ditto marcy's question, Coleman.
Jonathan Kopp (jbk) Tue 22 Oct 02 23:40
Marcy has writing the book, and now seeing it in print changed anything about the way you see your life with Daryl? I mean to ask, did you find out much that was a revelation in the process of putting it on paper? Given what you have said, I assume that the act of writing and publishing has been one of self-acceptance?
Marcy Sheiner (mmarquest) Wed 23 Oct 02 13:10
Jen, sorry, but you won't find the book in the library, as I published it electronically, POD (Print on demand). Maybe someone in this conf who has it would loan it to you. Jonathan, I had a lot of revelations when I wrote different parts of the book at the time that I wrote them. At this point, after 37 years, there aren't that many revelations remaining to be had! But writing, yes, is almost always somewhat therapeutic, which is probably why this book has become my life's work, as I said only half jokingly. Once I saw it in print, my strongest immediate reaction was regret that I did not take even longer and make it much better; I felt like a failure in some ways, in the way that some writers do. (I read that every time Erica Jong finishes writing a book she says "There. I've done my best and it's still not good enough.") I don't know if it has changed my relationship with my son, as that relationship is constantly evolving and healing anyway. I am still waiting for someone to tell me what an awful mother I was/am for the things I say in the book, that I am a whining wretched creature. That is what I expected all the while I was writing it.
Hoping to be a goddess, but settling for guru (paris) Thu 24 Oct 02 08:40
Marcy, I believe you showed enormous courage in voicing feelings and thoughts that most, if not all, mothers feel at some point during the child-rearing years. I remember a friend telling me that her pediatrician warned her never to go into her daughter's room when the baby had been shrieking for some time without turning on the bedroom light and taking just a moment to look at her. I think he believed that we react to babies (and kitten and puppies) with affection as a means of preventing us from harming them - and that looking at a screaming baby would, perhaps, offset the desire to do something drastic to stop the damned crying. I remember one frigid night in February when Zack was a new-born, going out to the garage and throwing soda bottles at the walls for about fifteen minutes. Zack had been colic, and had been crying non-stop for hours and hours, and I knew it wasn't safe for me to pick him up until I found a way to vent my anger. It became clear to me that night that the line between an "abusive" or "bad" parent and a "good" parent was about as thin as any line could get. I don't think anyone really knows what makes a "good" mother. My mother, for instance, stayed home, cleaned the house, cooked wonderful dinners, and made my life absolutely miserable in the process. On the outside, she looked like Donna Reed. Inside the home, she was a lot more like Cruella DaVille. I've often wondered what our lives might have been like had she worked outside the home, or found some more fulfilling outlet than fanatically cleaning the kitchen floor... All this to say: you did what you could do at that point in your life. I never got the the sense that your love for your children or your concern about their well-being disappeared. It felt as if you did what you did to survive, not to hurt them. I don't think you ever stopped loving them...
Jonathan Kopp (jbk) Thu 24 Oct 02 09:22
Yes - you have said a number of times that you are very surprised (perhaps even a bit dismayed) that the real anger you expected has not been leveled at you. Perhaps this is because your readers have felt liberated and understood by reading your confessions?
Hoping to be a goddess, but settling for guru (paris) Thu 24 Oct 02 09:54
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