what is the right age

[JOS]

A number of things have started me thinking about when, if I had been my parent, would have been the right time to tell me about IS

children are definately not equipped to keep secrets... so they could risk getting teased or even bullied by disclosing their personal info.

but I for one started thinking about 'what my family would be like' when I was about 7 or 8 years old

suddenly finding out I was infertile at 15 yrs (when in the middle of GCSE school exams) ... gotta be honest... less than ideal situation!

accidently learning about the whole CAIS part at 27... well could of been worse could have been when the tumour was found!!!

SO.
when?

I'm cross with my parents (not that I keep going on about it or anything LOL)
but when WOULD be a good time to find out you're not like the other boys and girls?

If there are any parents out there facing this right now, I would especially love to hear what you're doing?

answers on a post-card

Jos

[Dianne]

My personal feeling is that it should never be a secret and never make a big deal of it. There are ways to handle it to avoid the stigma if the parents are honest.

I believe that being less than open and truthful hurts a child far worse than the truth ever does.

[fraulein_Maria]

[QUOTE=JOS;16494]A number of things have started me thinking about when, if I had been my parent, would have been the right time to tell me about IS

children are definately not equipped to keep secrets... so they could risk getting teased or even bullied by disclosing their personal info.

but I for one started thinking about 'what my family would be like' when I was about 7 or 8 years old

suddenly finding out I was infertile at 15 yrs (when in the middle of GCSE school exams) ... gotta be honest... less than ideal situation!

accidently learning about the whole CAIS part at 27... well could of been worse could have been when the tumour was found!!!

SO.
when?

I'm cross with my parents (not that I keep going on about it or anything LOL)
but when WOULD be a good time to find out you're not like the other boys and girls?

If there are any parents out there facing this right now, I would especially love to hear what you're doing?

answers on a post-card

>>> i think it depends on how "obvious" it is. no one knows that a C-AISer is any different from any other girl... menstruation can happen as late as 19 normally!

because my daughter's difference was visible to her (if to no one else) she has always known... i hope her adoptive parents tell her as she is able to understand..... if not, I WILL when she looks me up.

I think, if i were raising her preimarily myself, i'd NOT tell her in the MIDDLE of puberty.... its a bad time to dump a blow on a kid's identity.

I think i'd tell her just before.... or just after.

about when i'd teach her to drive.... and for the same reasons. ;)

[Kailana]

The first time issues develope with the person in question. If they are still young kids, then so be it. Or puberty, late teens, young adult, it is gonna be different for everyone involved because we are all different. But I do believe that once there is an issue with fertility, or health concerns, when those stupid tests doctors start asking for, that is probably the most important time a person needs to have answers and have those answers explained. With the odd tests, odd visits to a doctors office, with no explanation for what is going on; that just leaves a person confused. Should surgery be needed for anything, explanations need to be discussed, and in reality the big lie, ie gonads being removed because of issue of cancer, needs to dissappear, as that is usually the exact opposite of the truth. The only time Gonads have an increased risk of cancer is if they are streaked, or have streaked bands of fibrous tissue within them, other then that, that is basically no reason what so ever to medically need to have gonads removed, depending on condition's gonads are removed for sociological reasons not medical.

[kamododragon]

I would keep things a secret from kids, because if you do, it would scar them for life

[Kailana]

the earlier a person learns about the condition the more time they have to understand and learn ways to cope with the condition. As I was 22 before finally knowing the reasons of why, the Dx's, I tend to think My 20's were the worst part of my entire life, my teens were bad, as I had no answers, just lots of confusion, my 20's were worse because I had some answers, but had no acceptance or openness from family, my 30's now became worse with more surgery, which lead to even more doubt's about what I am, and only now in my late 30's do i have what I call anything close to having an identity. I believe if I had been told as a kid, I would of found myself alot sooner.

Their is no way of actually knowing if I would of been better off with answers as a kid now, but I believe I would be a great deal better informed also believe doctors sharing then what they knew, would not be a source of my anger now, as I still have serious issues with redacted, purged, or destroyed medical records.

[EMW]

As children grow they have a great ability to understand their situation so you tell them what they can handle and give them more detail and information as they grow and ask questions. Basically you go at their speed.

Emily

[TLCTugger]

I would keep things a secret from kids, because if you do, it would scar them for life

I have a feeling we 100% agree, because I'm convinced from context that you meant NEVER keep a secret from kids.

Even with typical-gender kids, there is far too much secrecy and shame associated with gender issues.

If I was lucky enough to have another child and if the child happened to be IS, I would know that the child would need to learn about sex and gender-related stuff EARLIER than peers, not later.

Raising my girls I have always been 100% open and frank, with no judgements. So they have often asked questions that I think some parents would take as dropping a real bomb, like "Why is that man holding that lady on TV?"

And the sad answer, delivered with no sense of annoyance for having to answer it, is that he is a bad man and he's trying to make her have sex with him even though she doesn't want to. And then the floodgates open with questions about what is sex and all. And every question gets a perfectly honest and frank, but age appropriate, answer.

With the IS kid, I would imagine the curious questions arise from a younger age, but the honesty needs to always be there.

I don't know if this is true dictionary-wise or not, but the motto of our parenting circle a decade ago was "to discipline is to teach." This was supposed to mean there's no reason to hit a kid and if you think you need to then you have failed mentally at your teaching job. But anyway, parents owe their kids an education, especially about unique issues they face.

[Jonah]

I think in a lot of ways it should depend on the child. Some kids are ready when others aren't. For some kids it would make things easier and for others it would just be an added worry. If the child is going to go through an abnormal puberty, I think that letting the child know that the puberty will be however it will be, even if not why, is important.
But I wasn't diagnosed as a child, and am in fact still waiting on a diagnosis, so I may not be who you want to answer the question.

[Kailana]

I really feel that we need to know long before puberty, teen years are tough on everyone, and finding out we have a condition that others might see as freakish is really not a good time, but waiting tell we find out later on our own is even more foolish. the world allready knows our thoughts on finding out late in life what that has done to those like us.

we really need a new try? a change and really see what happens, cause honestly from all I have noticed over the years of trying to offer some support or guidance is that the only people who reallly seem to have a easy time or easier time with acceptance are those who knew when they were really young, and thier parents were the ones who told them when they were really young, still as kids. <---those are the lucky ones of us, they had parents who were open and honest, and that is what we all need. We need that openness, honest answers when we ask them. not having the answers I feel just makes all aspects of life extremely difficult.

[Dianne]

I agree Kailana. For me it was the attempt to maintain secrecy that caused WAY more damage than any knowing would have. I also grew up in "the Money years" when the philosophy was "Don't tell under ANY circumstances."

About age 4 or 5 I learned from a neighbour girl that I was adopted - it was nicely phrased, being "chosen" - and I had no trouble adjusting to that but my adopted mother's continued attempts to beat me into a gender role I couldn't comprehend created LOTS of problems from about age 5 onward. When my puberty went weird (having minor degrees of both male and female development) my mother's refusal to allow me to get medical help made things MUCH worse and eventually drove me to leave home.

It wasn't until decades later that I learned about Intersex and realized what had happened and why. It made me EXTREMELY ANGRY, particularly when I realized just how many people knew (family and friends of family) and not a single one of them had the ba!!s to talk to me about it! The secrecy nearly killed me and the lack of proper medical treatment has left some problems that I am still dealing with as I near 60.

Dealing with truth may be hard but dealing with lies and secrets is far worse. I think anyone can face a challenge if they know what it is.

[JOS]

Having mulled over the responses I have come to the conclusion that
'not telling' and 'actively hiding' knowledge about conditions can lead to
the breakdown in trust. Not only trust in parents/gardians and medical professionals but also a lack of trust in oneself and ones sense of the
world around us.
it might sound a bit over the top but discovering the information
by accident has left me feeling a bit lost because I've begun to question
even my own memories which are essentially part of the thing
that makes my sense of self.
I can understand the need to make things age appropriate but I would
even think to go further than purely waiting for children to ask the
right questions.... they might get a completely confused view, even though
the doctor/gardian might feel they've [the child] been given the complete
picture and have understood when actually they really haven't!
Questions are important, and assumptions seem like a poor excuse to me.
And in my personal situation... the buck does NOT stop with me!
I have child baring age sisters... who could have been affected too
They were also kept in the dark, and I was gently encouraged to leave it that way!
And so the cycle would have begun again :pat:

Anyway, thank you everyone who replied

[Kailana]

i do hate to say it, but as I am now 38. my memories of my childhood aren't perfect especially those as from 3 1/2-5. still can remember alot but the exact dates are off, there are too many things that just seem to well be stuck together.

I was actually very glad you did ask this question Jos. think it is important.
Also sort of wanted to ask if you with your experiences would be willing to be more open lets say with a niece or nephew if they had a similar issue with CAIS or PAIS and their own parents refused to tell them?

Would you be willing to do so? perhaps even against your sisters wishes? I don't recall if you mentioned you had a brother or not. But well I think for me, as I do have alot of nieces and Nephews and their is an issue with one nephew, that when he asks, i intend on telling him what I do know. Which honestly isn't very much other then the fact that he is supposedly like me. <---that is actually the only words i have ever heard mentioned and that was by my mothers own admission when he was born. Which says very little really other then the fact that my mother knows more, and choses not to discuss. Oh and if your wondering, my sister his mom, knows nothing other then those same words. She hasn't been given any answers either. And for those who start getting all up rightous and uppity you should know my mother works for the hospital where I had my surgery and my nephew was born.

Anyways really just wanted to thank you Jos because it is an imporant question. Sharing/telling as much as you know really i think does show and help people understand easier that we aren't all that different really. It proves a simple bond of trust and that bond is what really matters most.

[Dianne]

I know you asked the question of Jos but I did want to offer a couple of comments on the subject of others knowing and talking about it.

When I realized how many people knew about my own "oddity" I quickly realized (by their actions) that they fell into two camps during my childhood. The first camp were those who followed the advise of John Money; they told me nothing, discouraged or even blocked me from seeking medical help, and they did everything they could to badger me into behaving "the way I was supposed to". The other camp were people who cut me a lot of slack, helped me find myself (as a teen), were very accommodating to "the way I was", and helped me find avenues to express myself, the way I felt.

I know both camps had the best intentions but only with the latter did I find any solace and comfort. If any of them had taken me aside and told me what they knew, it would have made a world of difference and made my life a whole lot better.

It may be somewhat unethical to talk to someone else's kids about something the parents chose to hide but I think it is for the greater good of the child.

[Peggy]

Hi all,

Dianne wrote,

I also grew up in "the Money years" when thephilosophy was "Don't tell under ANY circumstances."

And also

...those who followed the advise of John Money; they told me nothing, discouraged or even blocked me from seeking medical help...

Dianne, I think you have picked up a false idea (indirectly) from a small number of 1990s activists - the idea that Dr. John Money recommended
that an intersex child be kept uninformed. Money actually, in numerous writings, advocated that children be informed in (his own words) "age-graded steps" to avoid "the anguish of disillusionment" later on. He also recommended that parents be informed so that they can "follow the same reasoning as the experts who guide them and not have to take a pronouncement on faith".

It *is* true that in the past and also into the present, it has been a common practice to under-inform intersex children and even adults, but this practice existed before Money, who was, if anything, a reformer regarding informational counseling. I people have continued to be kept in ignorance, it was in spite of, not due to, his efforts.

My own cousin with PAIS saw Dr. Money at age 11. By sneaking a look at his records, I got to read the transcript of Money's hours-long session with him, where he explained his condition and treatment options to him in far greater detail than any doctor ever did for me, even with my persistent questioning.

Friendly greetings to all,

Peggy


• • • • • • • • • • • • • • • • •
"When art critics get together they talk about Form and Structure and Meaning. When artists get together they talk about where you can buy cheap turpentine." - Pablo Picasso

[JOS]

and one I was asking myself over and over.
it's a cop out for me though because I am lucky
My sister was really supportive and greatly appreciated my telling her what I'd discovered
I got tested to work out the exact mutation affecting me so we could see if the mutation was present in her and my other sister.
If a carrier she would know the chance of her daughter being affected and could test her daughter so that if she were CAIS they could raise her with different expectations to the ones I had.
And guess what.
this is where my whole question/anger regarding this phrase

"a patients right NOT to know"

comes from....that was the phrase her 'specialist' used.... not in 1990... in 2008!
HE said he would not feel comfortable testing a pre-pubescent without just cause (e.g. presenting with a hernia).

Anyway, I have already begun to explain to my neices and nephews that I am somewhere between "normal" male and female
but I don't want to totally confuse them either, they barely know what sex they are!!
they don't know what a womb is but they know I don't have one LOL
... but when they ask me about why I haven't given them any cousins, I do not lie to them and that goes for my brother and sisters children and my husbands.
As for my brother... yes I told him about CAIS too, figured it was pretty
unfair not to really since I felt morally obliged to let my sisters know.
Plus I was concerned about the whole testicular cancer thing,
since I had the malignant tumour and some cancers do have a genetic run...
I now realise it's unlikely he'd be affected directly but hey,
it's always good to make men aware they should regularly check their testicles for lumps
not to mention prostate cancer.... I digress sorry

But WOULD it be right to go against a gardian/doctors wishes?
even as their Unty DO I have that right???
(---> Unty = uncle/aunty lol.... sorry just a bit of a joke to lighten the mood)

I don't know?.... but I don't have to be ashamed of who I am either!
of course, in different circumstances it could just result in never being allowed to see them again?? sooooo???

????

[Peter]

Hi all,

I have been thinking this question over for some time, and believe that at least a couple of very important things have to happen early in an intersex child's life.

First, I think that intersex children have a basic right not to undergo non-consensual infant genital surgery, unless the underlying metabolic health of the child is in danger. I underwent infant genital surgery, and once that path is started down without the consent of the child, parental guilt, shame, and secrecy almost automatically follows.

Second, if an intersex child ever asks about their body, it is the parent's responsibility to be open and honest with the child, and not deny the child's question, or lie about it. Children are often very tuned into issues of trust, denial, and honestly, way before they have ever taken a biology class.

Having said that, I believe that the best age to discuss an intersex child's condition with them is about the age of nine years old. When I was seven years old, and indirectly had a conversation about my intersex condition with my mom, resulting from my being denied entry into the Cub Scouts, I was too young to grasp the situation without it causing much personal fear. Part of that was due to my own parent's fears for my future. But when I was nine years old, and my father described to me that I had had infant gential surgery for undescended testicles, I took the information in all in stride. I asked him what undescended testicles really meant, and he said that it is when the testicles are pushed up inside. By the time I was nine, I was at an age when I could take all this in, and not be too upset by it. So... this is a highly unscientific sample of one, but I say, based upon my own experience that the age of nine is about the right time for full disclosure. Also, in the future, if parents are more enlightened, and take a more cautious approach to infant genital surgery, it would be a good time to begin talking about what might be coming up in puberty, so that it will not be treated as an emergency on short notice later, as has happened to some intersex people whose bodies developed in ways that they were not expecting when they hit puberty.

Peter

[Dianne]

I don't want to derail this thread but just to make a quick comment

Dianne, I think you have picked up a false idea (indirectly) from a small number of 1990s activists - the idea that Dr. John Money recommended that an intersex child be kept uninformed.

I have read much of Dr. Money's work and am aware that he advocated both sides of the issue at different times. It seems, however, that his advocacy for secrecy was more widely adopted than his opinion on openness and his refusal to back down on public cases (such as David Reimer) had a huge negative effect. From talking to therapists who are working with Intersex cases today, much of the same attitude is still in effect and IS children are still being kept in the dark.

[Kailana]

i'll make this a simple answer to Jos's post.

When your asked Jos that is when you should tell your family members, nieces or nephews. I have done the same on several occasions. Really am not to worried they all kids seem to understand that people are infact different, they do not have the stereotypes drilled into their heads to make harsh judgements against you. those will come later i am sure but honestly the younger the better. Besides i really do think that if a kid asks an honest question then they deserve an honest answer.

oh and besides doctors realy are opionated so I would ignore that one most. Might be a bit more reserved with a parent/guardian only because they may feel that their kids arent ready to learn about these things. However I do think that if they are asking, then it is the right age to tell them or give them answers.

Word Definitions needed to be added to Webster's Dictionary
Unty= Uncle/Aunty <---Jos
Dauson=Daughter/Son <---peaceandparty

anyone else have or have heard of other references to how we can be called? I would really like to hear or read em, just make sure its none of that porno crap/garbage ie(she/male, she-he). just wondering if anyone else has family nicknames for what they are other then intersexed or hermaphrodite or whatever else the medical community comes up with.

[TLCTugger]

anyone else have or have heard of other references to how we can be called?
Friend?

I'm serious. I was in line at Subway and this person whose preferred gender label I honestly could not have guessed was in front of me.

The polite shopkeeper addressed each customer sort of ritually with a title: "And for you, Madaam?" "How may I help you, Sir?"

So the person in front of me gets up to the counter and the shopkeeper solves the problem by saying "What will you have, my friend?"

I had a book during college called "The Handbook of Non-Sexist Writing" by Casey Miller and Kate Swift. It proposed a silly (in my opinion) new posessive pronoun to mean "his" or "hers," and that word was "thon." So you'd say: "Did Pat pick up thon tickets at the box office?" Very awkward. And it wasn't meant to solve the problem of addressing IS folk, but rather of not being presumptuous about gender, as in: "The Chairperson should take all of thon belongings to the anti-room and wait while the members deliberate on thon retention." (If you were writing by-laws of some committee).

Cheers,
-Ron

[Kailana]

why clerks/reseptionists's just dont use gender nutural references. Like; "how may I help you?", "do you need a hand with that?".

seriously think the sir and or mam/miss/madam, or Mr. aren't even needed in the general conversation with people.

[vintagedoll42]

It's sad how diametric English is, isn't it? As an English teacher, I suggest my students choose plural descriptive nouns to avoid gender bias and awkward s/hes.

I love the clerk's solution, though: "friend" is a lot better than ma'am or sir!

[Kailana]

imagine yourself standing in line and all other people are referred to as a mam, or sir and when it comes to your turn you get a "friend how may I help you"?

I would think for me, I would take that simple comment as an insult. Almost as if i wasn't good enough for a sir or a mam. Honestly think that even an incorrect gender pronoun while upsetting would not be as hurtfull as being reffered to as friend? While friend might be thought of at least a polite comment, I do feel it would be upsetting to hear.

[chuzzlewit63]

Sara is now almost 5. I tell her she is a girl but that she has always been a both a bit boy and a bit girl. She asked her 7 year old sister and me the other day if when she grows up she can be a man. I said "Of course you can." She beamed. She says she either wants to be a fire fighter or wants to drive a truck. That's my sweetie!

Pam

[Kailana]

I am wondering if you have found other support groups to gain some insight from parents of IS Kids?

Most of the people who post on BLO are well like me, lol kind of angry over all the things we have experienced. I know I have joined and been kicked from a few parent run forums for intersexed conditions. I actually left one on my own. So not all of them kicked me. But I do know that there are some parents in them that are pretty open and it seems their kids are alot better off then the kids of the parents who are pushing a gender.

I hope you can find other support groups that are appropriate and helpfull. I am sure there are several parents who have some good experience and might have some helpfull suggestions for you.

Anyways, thanks for the short update and I do hope Sara is happy. Looks like she or he allready has family acceptance so at least Sara knows she is loved which does do wonders for ones own self confidence.

CHeers to ya.

[steve/lisa]

I to had undesended testicles till i was 11 1/2 yrs old that was the time i had my 4th surgery to bring them down,little buggars did'nt want to come down,the hormones my father started me on was at best hard on my body and my mind,also the female hormones my body was making was hard to,i grew breasts at 14 yrs old,torn between mothers upbringing and fathers was even more horrible than you may think.

But like most of you I to found out when my body thought it was time,but now,yrs later,and my family has all gone home and I am all alone in this world,making my own way,living the best i can,as you all know I live as lisa now all the time instead of part time,my male side all but gone,I hardly ever now run into a crow,I am always refered to as ma'am,or Ms,or the girl over there,I like that I'm refered to as what I look like no more,yes ma'am sir may i take your order,now it's always as a her or female,and i like that,i would'nt trade that for all the tea in china.

So when to tell a child about what they are,well,each child is different,and matures at a different rate,that I would leave up to a concerned parent,hopefully they would have the wisdom to tell at the right age for that child,so they would evolve into whatever they are inside and out,and then make a wise decision about correcting which way they should or could go as far as their sex to be.

Yes I was upset and even very mad and sometimes hostile at my parents for what they did to me and I may never forgive them for it,But,there all dead now and gone home,so I have no-one to yell and sceam at about this,this way I am inside and out,so,I just live the best life I can,I try to find some happiness when I can,and try to be the best person I can,if I just dwell on the what if's and the what should have been's then I will end up a sour person,never finding any happiness in this life.

It is after all my life,and no-matter what I chose to live as as I have been both at different times in my life,I still have to laugh,smile,find a friend or two,and if I'm lucky again,find a lover,oh my,to find a lover to share my happiness with and to smile at,and really laugh with,and not to be laughed at anymore,that is my total goal now.

Does it really matter what we were born as now at this stage in our life's,or what we were made into,or what we became or become,as long as we can adapted to whatever we are,or whatever we feel we are,living the best we can, should be the only goal we should strive for,Yes I could be bitter forever and always be unhappy and miserable,but I refuse to be any-longer,as thats a dead end road at least for me it is,I know i hit the dead end a long time ago,turned around and found my way back.

Yes as some of you know,I have had many many bad things happen to me in my short life,and it would be very easy to be bitter about it all,But I to have had wonderful things happen to me to,just wonderful things,the birds sing for me now,the sky is blue for me,and the flowers are blooming for me to,I guess what I'm trying to say my friends,keep smiling that way the crows don't know what your thinking then...Lisamay S...

[chuzzlewit63]

I've connected with a couple of folks, but it just hasn't been much of an issue yet because Sara is so young. So far, no demands have really been made on her either at school or at home relating to gender. I think things may get a whole lot more difficult come late- elementary/middle school. I think that is when I will be more active in getting her to meet other kids with differences like hers. Seems AIS folks have the biggest community...I think her situation may be a bit different...more female to male issues, I predict....we'll see.

I sure do appreciate your support. She is happy as she can be. We adopted another little girl with some of her own special needs and the 2 are tight as can be. Happy little ones!

[Kailana]

i am not sure if AIS has the biggest community, think they are more united, better organized then alot of other support groups that are condition based. think after AIS would probably be the Turners society.

honestly think alof of other conditions would be promoted better but many conditions using the hiding the condition from the people affected are worse. with AIS and Turners the conditions are a bit more obvious and much harder to hide then others.

lots of other conditions though are well treated differently.

[kristan]

I'm 38, and have only had confirmation of being intersexed for 4 months. I spent 24 years believing I was a male to female transsexual, and when I came out to my family at 20 they allowed me to believe that rather than tell me the truth. The "family secret" is now out, and consequently relationships have been shattered for now.

The issue of parenting for me lies solely on the side of telling the truth to the child as soon as possible, but I'm biased due to my own experiences. I'm left now with whatif's/shoulda's/woulda's/coulda's.

So many experiences I've had are now in question of their validity/reality......and so many things I have heard said amongst family members now make an eerie echo in my head.

Who/What am I?........The reverberation of those questions is now a constant headache. The "self obsession" this is creating is clearly not healthy for me, but the denial and shame being exhibited by family members is only exasperating the situation. How long shall I remain resentful? When should I forgive the ones still in denial? Should I be ashamed of their actions? and/or mine?

Should I resign myself to the phrase "The damage is done?" My family/extended family numbers in the triple digits. I came out to my Mom at age 22 as being transsexual using the phrase "there is a girl inside me" her response was "I know", which at the time seemed like validation of being transsexual........eeps was I wrong! My bodies own self preservation sent me back into denial at that time, and when at 32 I came out again with the weapon of "hey Mom, what are these scars?" I was told to see a Doctor. Going thru a divorce at that time, and consequently losing my children because I was deemed as a sexual deviant/freak by those who knew of my condition and some who did not know sent me into a deep depression and denial phase.

I attempted suicide in 2008 and spent a week in a coma.......as karma would have it 4 months later I fell in love and married....are you ready?......my beautiful Intersexed wife!

She has been instrumental in this journey of acceptance and self value.

So, I now ask the question of what is right......tell the child as soon as possible? Not at all? when they are ready?(when is that?).

As for me? I'm gonna stick around to see what happens next. God gave me this for a reason.

Smooches,

Kristan

[Dianne]

You story is much like mine Kristan, remarkably similar.

I firmly believed I was a girl up to age 8. The constant badgering and abuse finally put a few cracks in my sense of self and I went through my teens waffling between "girl" and freak. When the term transsexual first came out, I assumed that must be what I was, at least Dr. Benjamin's term "complete psycho-sexual inversion" seemed a perfect fit. By age 24 all I could identify with though was "freak" and I tried to kill myself (more than once). Fortunately I was rescued by a charitable surgeon who at least was able to give me a body I could live with.

I didn't know anything about Intersex back then and didn't even hear the term until much later in life. At age 40, I met my birth mother and learned the circumstances around my birth but it was many more years before the pieces of the puzzle started to fall into place. When they did, everything made sense. Now, at age 60, I have finally decided to get tested to see what, if any, physiological factors can bet determined. It may be 5ARD, maybe PAIS, maybe ovotestes, who knows but at least I have a good doctor who is as curious as I am.

In the end, I suspect it will come down to either ovotestes (long gone) or simply transsexualism, but however I got here, I am here and I am unique and I like who I am LOL!

[kristan]

Dianne,

It's nice to know that my story is not unique, and that others can relate/empathize/support us.

Cheers,

[Kailana]

So many experiences I've had are now in question of their validity/reality......and so many things I have heard said amongst family members now make an eerie echo in my head.

Who/What am I?........The reverberation of those questions is now a constant headache. The "self obsession" this is creating is clearly not healthy for me, but the denial and shame being exhibited by family members is only exasperating the situation. How long shall I remain resentful? When should I forgive the ones still in denial? Should I be ashamed of their actions? and/or mine?

Kristan

Hard questions your asking of yourself. I would say i have no idea lol. Seriously all I have for myself is resentment for parents and doctors.

Resentment can tear a person up, and i know i am not strong enough to continue kicking and screaming for much longer. I don't know if this will help any but resentment really does tire out the soul. I hope you can get past some of the angst you are feeling, I know i am failing terribly over similar issue's.

hang in there though, you have someone special that can make your life much more enjoyable. Your not alone and many of us do understand what your feeling. Perhaps there will be a time when answers are provided and with those answers come some peace of mind.

treat your soul with love and kindness, it needs it. Cheerish each new good experience and hang onto the good moments, and do your best to ignore the bad.

I think I am going to start carrying a camera with me everywhere just so I can take a snap-shot of when I am happy and maybe just maybe make a nice collage of good memories for myself to remember that even in the crappiest of times, a little happiness can be found.

[kristan]

Kailana,

Thank You so much for those kind words, as I sit here typing I am less stressed than I was before reading your reply.

I really just want to be acknowledged as a breathing/living/feeling human being to my family.
I read in another post here that someone related the knowledge of finding out you are intersexed to being adopted. I could not agree more, especially since my father would comment at times when I was young that I was adopted from Indians, and then in the next breath make a financial comment sarcastically about the "price" paid to have me born. His favorite was to say it only cost 5 dollars, which at the time I thought he was telling the truth, now I know he was just being a jerk taking into account the cost of intersex surgeries.

I'm catching myself ranting and raving about things I remember that all of a sudden make sense. I hope the forum does not mind if I let off some steam once in a while. I'm really trying to learn as much as I can to better my life.

I like your idea about the pictures, I'll discuss that with my wife.

Thanks,

[Dianne]

...especially since my father would comment at times when I was young that I was adopted from Indians

That isn't too bad. When my adopted mom would get really frustrated with me, she would say I was "defective" and she should have taken me back (to the adoption agency).

...then in the next breath make a financial comment sarcastically about the "price" paid

Ah, another similarity! I had numerous trips to the hospital in my early years (for what I don't know) and another of my mom's comments was about how much I had cost them. She was a peach, just a peach!

[Laura Robison]

I read in another post here that someone related the knowledge of finding out you are intersexed to being adopted.

Hi Kristan,

Yeah, that was me. I can so relate to how you're feeling. I had thought I was a MtF transsexual ever since I first heard of the word in the 1970's. When my mother answered my question about my scars, and I knew I was intersexed, so many things in my life finally made sense. I feel stupid that I didn't realize it after my SRS when my doctor revealed he found my vagina, but I didn't know about intersex back then.

So many experiences I've had are now in question of their validity/reality......and so many things I have heard said amongst family members now make an eerie echo in my head.

Who/What am I?........The reverberation of those questions is now a constant headache.

Those are the same thoughts and feelings that have been a constant roar in my mind. I haven't even known for 4 months, maybe 2 months now, I can't even remember, so this is even newer to me than it is to you. I started on this forum when I had suspicions, but I hadn't asked my Mother about it until later. I hadn't even heard of intersex before this year, and now I'm going through all of this!

I wish I had never had surgery. It has caused me nothing but problems, and ruined my life. I wish I had been told what had been done to me early on when I was a child. Knowing would have been infinitely better than not knowing. I think children should be told as soon as they are able to understand. These surgeries and the secrecy and lies that surrounds them are a crime.

I think the answer to my psychological well-being may be to accept and forget about the things in the past because they can't be changed, and to forgive those who were involved. Unfortunately, I'm not there yet, and I don't know if I ever will be. One thing I am doing is posting a lot on various blogs about the evils of these non-consensual surgeries, and the covert use of hormones, and the secrecy that surrounds them, and advocating for our rights to be able to determine what we want for ourselves when it comes to our bodies, and the right to have access to all of our medical records.

[kristan]

Laura,
two days ago I emailed my Mom lobbying for more information and my medical records......but, no response. This brings up so many feelings of rejection again. I don't think I'll ever be able to get SRS due to financial reasons, but I am on a MTF HRT regimen.
I have heard many horror stories of the physical and psychological effects of SRS on some people. I am sorry to hear that yours was not what you may have expected.
posted by Dianne:
Ah, another similarity! I had numerous trips to the hospital in my early years (for what I don't know) and another of my mom's comments was about how much I had cost them. She was a peach, just a peach!

I love, just love your use of sarcasm!

[Peter]

It may be 5ARD, maybe PAIS, maybe ovotestes, who knows but at least I have a good doctor who is as curious as I am.

In the end, I suspect it will come down to either ovotestes (long gone) or simply transsexualism, but however I got here, I am here and I am unique and I like who I am LOL!

Hi Dianne,

It is good to hear that you have a good doctor. Ovotestes are gonads that contain both male and female genital tissue. Without the original gonads to examine, you are highly unlikely to get a diagnosis of ovotestes. You also mentioned the possibility of 5ARD or PAIS. A past study of transsexual people determined that about 40% had a hypogonadotropic hypogonadal condition. If you grew up with a feminine body and experienced little body change at puberty, you may have a hypogonadotropic hypogonadal condition. If you had female appearing genitals as a child, and then at puberty your genitals strongly masculinized (penile development etc.), you may have 5ARD. PAIS would generally include gynecomastia (breast development) at puberty. So, these are some of the physical signs to look for, if you are thinking about 5ARD or PAIS. But, in the end, only your doctor can provide you with an intersex diagnosis.

Peter

[Dianne]

I am somewhat familiar with the various conditions - I have been reading about various Intersex conditions for a few years now.

My own physiological indicators were:
- "micro penis"
- "testes" that could be palpated out but were normally internal
- after puberty, estrogen about 1/2 of normal female (and cyclic) and testosterone levels about 1/2 of normal male
- no genital development at puberty
- breast development & development of female hair pattern
- some voice change, some masculinization of phenotype

There were other "suspicious" things, but they are uncertain.

I didn't know anything about Intersex in 1974 and by the time I found a surgeon (whom I had to pay with my own money) everybody was only worried about keeping me alive (I had been SERIOUSLY suicidal for years.) Even if someone had suggested a histology on excised tissues, I couldn't have afforded it - the surgeon even waived his fee for my corrective surgery so I could afford to at least pay the hospital.

From all I have read, ovo-testes fits what I know to a T but I also know, with them gone, there is no way to be certain. The doctor has her normal sequence for tests so I am just letting her rule out things that I have already discounted as being improbable.

[Laura Robison]

Hi Kristan,

I'm glad you are on hormones, that helps so much.

I have heard many horror stories of the physical and psychological effects of SRS on some people. I am sorry to hear that yours was not what you may have expected.

I'm sorry if I wasn't clear about that. The surgery I said I wished I never had was the non-consensual surgery the doctors performed on me when I was a baby to make me more like a boy. That's the surgery that ruined my life. If only they had made me a girl instead.

Psychologically my SRS was exactly what I needed, even if the physical results were not so good. It was the best thing I ever did for myself. It took three more surgeries, but now I am satisfied with my appearance and function. The SRS surgeon was at a disadvantage with me, and didn't have much to work with.

I hope someday your situation improves so you can have SRS. The techniques are very good now, and can preserve all the pleasurable sensations too.

[kristan]

[QUOTE=Laura Robison;20848]I'm sorry if I wasn't clear about that. The surgery I said I wished I never had was the non-consensual surgery the doctors performed on me when I was a baby to make me more like a boy. That's the surgery that ruined my life. If only they had made me a girl instead./QUOTE]

oh...ok, glad I misunderstood and your SRS was satisfactory!! YAY!

[Minerva719]

Hi- I'm new here. I started on Laura's playgrd- glad they had this link.
I have a 5 yo daughter with CAH. She did have surgery at 6 mos and we made sure the Dr knew what he was doing- the surgery is much improved from 20+ yrs ago. So far I am glad we had it done (it was for the most part medically necessary) but we are early in this journey.
My daughter is a little hyper, very bright, basically normal development. By her 4th bday she has had these rare events in which she says she does not want to be a girl, and that she feels like a boy. Then I can't get her to share any mroe on it for months. Her raspy voice has gotten higher, I think from emulating girls, she tries to fit in with the girls, but her favorite toys are Transformers, action figures, spaceships etc. She absolutely refuses to wear a dress and by age 4 was notably distressed when I put her in a dress, but otherwise has long hair, pink shirts, girls' jeans, etc.
I have considered telling her that her "feeling like a boy" and her CAH are related ( she knows she has CAH- knows it's very important to take meds 3x a day and extra when she'd sick).
I have had a very rough road due to my own disabilities, some of this affects her, she has a lot on her plate for a little kid. But so far it's just been about her health (which has been great despite CAH) and all the usual developmental concerns as she has grown into this wonderful, joyful, creative & loving little kindergartener.
But I've always known there would come a day when it gets a little more complicated to "manage her CAH." I don't know if she's ready, sometimes I dont know if I'm ready. Could she handle that as a start- that "it might be because she has CAH that she feels like a boy" ??? :star:

[spacegirl]

Hi Minerva,
It sounds like you have a lot of heavy concerns. I'd like to reassure you, if I may.

Having grown up with a pretty bad case of untreated 11-beta cah, which can be gotten away with because 11-beta doesn't necessarily kill you if the resulting high blood pressure doesn't, and can just leave you feeling rotten, but does produce a lot of androgens ...

My own personal opinion is that hormones do not make us what we are. And telling your daughter that cah makes her think she wants to be a boy is doing her a great misservice. In later life it will just give her an excuse for writing off her personal flaws as the cah's fault, instead of being a responsible individual and trying to improve herself. Being a bitch? cah's fault. Lack of personal qualities? cah's fault. The list goes on and on.

And face it, being a tomboy is a long way different from being the real thing. A tomboy standing in a real boy's shoes will get the living daylights beaten out of her by the world at large.

I grew up during an androgynous era in american fashion history. And for a long while, none of the girls growing up ever wore dresses except for formal occasions. Her acceptance of the cultural clothing norms may be an inevitable requirement, eventually, but a lot of tomboys (and even non-tomboys) need some time to get there. 5 years old is no time to make final predictions.

Cultural norms are just that, cultural. They're ideals and generalizations. It's the variations from the norm that make people interesting

Hopefully, that's reassuring. Don't panic :)

[JOS]

I'd like to say how lucky I think your daughter is to have a parent so accepting and open to the factors affecting her life :)

spacegirl said
They're ideals and generalizations. It's the variations from the norm that make people interesting

I agree with some of spacegirls comments and personally feel you might prefer to take the approach of empowering your child. Help her rather, to feel that it is ok to express herself and make choices about how she wants to dress/play. That you already appear to allow her to play with action figures etc. speaks volumes for the good job you are doing on that front, in my opinion.
My own sister has boys and a girl... all of them played with dolls together and even played at "breast-feeding" them...
my sister didn't sit worrying and wondering if they had gender identity issues or intersex issues etc.... she simply thought how good it was they played so nicely together and had picked up from her example that babies are better off being breast-fed :)

If you're having difficulties/worries about how you talk together, I have recently been reading a book called "How to talk so kids will listen and listen so kids will talk" by Adele Faber and Elaine Mazlish.
The book is not IS related in any way but from what I've read so far it seems to offer some great practical advice on helping children to feel happy about telling parents about their problems... so it might help.

I think before you tell her CAH could be responsible for some of her feelings, it might be a good plan to be sure exactly how she views herself.... and let her know that you love her unconditionally.
In the mean-time keep your own record of operations/medical explanations etc. of exactly what happened and when and what it might mean... so that when the day comes, you can provide the information that she needs.

But I have never raised another human being... so...!!

Thanks for coming and sharing your story.... it really does mean a lot :sign16:
Jos

[Ryles]

Minerva- I don't know how being intersexed effects gender identity, so I don't even know if being CAH could cause those feelings.

I think your kid's too young to say anything for sure, though. It's possible your child will grow up to be a man or a mix of the two, but it's just as likely that your child is a tomboy and sees the boys doing things they want to do and want to be "a boy" to do "boy things" but is still a girl. I don't know how much young kids understand gender or what it means to be a boy or girl. When they're an adult they might look back at saying they wanted to be a boy and laugh at how silly they were to say something like that.

I think it's good to be aware that your kid may not grow up to be a woman, but I don't think there's any reason to assume they won't and don't know how CAH could effect it.

I'm not a parent, so I can't really give you any advice on what to do with it. Letting them be themself seems to work alright, though. Good luck. :)
My own sister has boys and a girl... all of them played with dolls together and even played at "breast-feeding" them...
Men can breast feed, too. I don't know if it's an "all men can" thing or not, but I know a few guys who've gotten themselves to lactate for one reason or another (no mother to do it, to share the responsibility, curiosity, etc).

[Kailana]

Minerva719 I am very happy to see you post a serious question from a parents perspective.

first let me say that CAH could be a real issue here, as your daughter has been infact exposed to higher testosterone levels as a fetus and infancy.

Now this is known fact that the yahoo brilliant scientists have allready figured out, ie brains are influenced in early fetal life and there is not much you can do about it.

your daughter has a brain, and unfortunately she is using it. lol
My apologies, she will think however she does because that is who she is.

I must agree with one of the former comments that you are doing a disservice to her or perhaps him, your child.

I don't want to sound mean or cruel, but regardless of the surgeries you have allowed or thought was nessecary your child will act and behave and believe how he or she wants to believe and there is only one thing you can do to help.

Listen to your child. regardless of CAH your child is going to express herself or himself as he or she choses. <---that is the obvious thing that is happening.
as you are concerned, I will try to help a little explaining your concerns.

IS CAH the problem with why your little girl believes she is a boy?
Probably

what can you do to help her?
I used her because that is what you wrote, and I will now use Him, because that is what your child says. He will identify as he wants too. So please do yourself and your family and especially your child a big favor and do not blame CAH for why your child is a boy that looks like a girl that happens to have XX chromosomes whom has CAH.
CAH is just a condition but how a person feels about themselvs does matter. Fact is that is all that really matters.
So I hope you have enough understanding that your child may be facing some serious issues with whom he is.

Does it mean your little girl is a boy?
If your child says so consistently then yes your child is a boy.
if your child is well just in a stage of questioning what he/she is then it will pass. There is nothing wrong with a little doubt about oneself. So don't worry about it if you can.
I am quite sure you love your child, so please just keep on loving your child and be open and honest and perhaps talk to a few more parents and try to understand and just be open with your child.

Fact is you should probably talk to her/him now and try to get a little more information out of her/him, and keep talking, let your child know it is ok to express her/his feelings about how he or she feels and let her know as well or most importantly that it is ok. there is nothing wrong with being a boy with XX chromosmes that has CAH, fact is depending on some of the variations several genetic girls are raised as boys and it works for them.

most people here on BLO would of mentioned to not due surgery untill your child expressed a gender of her/his own. Many of us understand what life is like dealing with condtions that our parents did not understand.
I hope you find BLO helpfull but please try not to judge any of us too harshly either.

There are a great many of us who have issues with our own parents and understand very well that a parents issue with us and our conditons will not always be our issues so our parents may not see us as we see ourselves but it is ourselves that is the realy only thing that matters.

our lives and how we live them is what is important, having understanding, loving and compassionate parents can do a great deal of good to any child so please remember that of those who post here most due so to try to help others understand and find a better way to help and educate those that are looking for support and answers on conditions that are not so easy to understand.

best wishes to you and your family