What would you do?

Stress Queen · 31-05-2008 3:21pm #1

Hi Everyone,

I'm a long time lurker of boards but I have never plucked up the courage to join (very shy type) however, the need for some opinions and advice for my problem is far out weighing my shyness! So here I am.

Anyway, firstly I am keeping the details some what vague as I know some of my work colleagues use this site, but hopefully I will give you enough background so that you can give me your honest opinions regarding the situation I find myself in.

My husband and I want to start a family. However it comes with complications. I have siblings who are mentally handicapped. However, due to their ages, when they were young, my parents never had an official diagnoses as there was nobody qualified to make one (according to what my parents have told me). In the meantime, one of my other siblings who is "okay" has had children who have been diagnosed with autism. On the other hand I have another sibling who is also "okay" has had children and they have no mental handicap and are fine.

So with all that in mind, my husband and I made the decision to make an appointment with a geneticist as we would like to know statistically what are our chances of having a child with a mental handicap. However when I spoke with the geneticist I was told my genes cannot be tested for anything until my mentally handicapped siblings are diagnosed. The geneticist said she needed to meet with them, have them assessed and then based on the diagnoses she would then test my genes when she knows what to look for.

However when I asked my parents permission to bring my siblings to be assessed they freaked out and basically said it's not an option. So as a result this means my husband and I have to try and make our decision based on our gut instinct and not much else. My husband wants to try anyway but I am very fearful. At some point in the future I will be one of the main carers of my mentally handicapped siblings, this will involve them living with my husband and I, not to mention wanting to be there for my other sibling who has now got children with autism so I really feel like my plate is already quite full. I really do want children but to be honest I don't think I could cope emotionally if the same thing happens to me. I feel under such pressure also because my husband is highly intelligent, he's a Mensa member and all of his family are the same, so I keep thinking if we have a child with a mental handicap I have to live with this knowledge for the rest of my life knowing it's my fault and I feel like that's what others will say too behind my back. I am so torn between wanting to have a child with my best friend and my husband who is one in a million but on the other hand I am so scared of history repeating itself. So that's it. I would be very grateful if anybody would give me their honest opinions as to what you would do if you were in my shoes?

Thanks for reading.

gogglebok · 31-05-2008 3:31pm

I feel for you. It sounds like a very stressful time.

I know nothing about this, but the only option I can think of is to persuade your parents. Did they give any reason why they were refusing, or was it just a shocked first reaction? Maybe when they've had a chance to think about how much this means to you, they'll be more inclined to help.

Good luck.

Stress Queen · 31-05-2008 3:45pm

Thanks for the response Gogglebok.

My parents didn't have to give me a reason in their eyes, although they actually did. I was told my siblings were brought "all over the country" at the time but nobody could diagnose them. So that's the end of it. They are both in their mid seventies, they're very old school, and as I am the youngest sibling I have never been treated with respect. They still treat me like i'm a child and always will. Let me be clear when my parents say "No" to anything you never ask them a second time, been there, done that. It's just not an option.

herya · 31-05-2008 3:56pm

What a tough situation, I really feel for you too...

It might be difficult to estimate not knowing the exact nature of the defect, but do you think there is a chance that after the tests the geneticist will be able to tell you that you're absolutely safe? Or maybe it's more likely that there will always be a risk, however big or slight, of your child inheriting it, and you'll be left facing the same question, maybe only knowing the odds a bit better?

In other words, will examining your siblings give you a yes-no answer? If not, maybe it's not worth antagonizing your parents... If yes, I would try to convince them again & again, maybe with the help of other family members and giving them more time to get used to it. Surely they'd love to see their grandchildren in good health? And for you it must be one of the most important questions in your life.

Edit: your parents, is their problem with your siblings being assessed or travelling for it (something they said about hauling them all over the country)? Maybe you could arrange a visit by the geneticist as a possibly most comfortable and less threatening option?

Stress Queen · 31-05-2008 5:26pm

Hi Herya,

Thanks for your response. Firstly, the geneticist told me she could tell me statistically the likelyhood of reoccurrence and nothing more. Examining my siblings will more than likely not give me a definitive answer but I feel at least I will know my odds if they are assessed and finally diagnosed.

With regard to convincing my parents again, it really is not an option, let me put things in perspective. My mother decided one day to discuss something very personal about me with a neighbour, she then told me she did this, when I got upset and challenged her, my parents actually kicked me out, i'm not joking.

In their own eyes, they believe they are always right, they have never apologised to me or any of my siblings for any wrong doing in the past, they are very complicated people. They believe that they should NEVER be questioned or challenged about anything as they believe they have the right to do/say anything as they are the parents and we're the children! You are right though, it is one of the most important questions I will ever ask in my life but the bottom line is my parents don't and won't ever see it that way.

LegacyUser · 31-05-2008 7:14pm

This is one of the most important decisions of your life. I can't believe that your parents would be so inconsiderate. Explain to them that there have been huge developments re the study of autism in recent years and that things can be assessed and determined now that could never have been assessed in the past. This is a really big deal, you are going to have to fight for it. Do you have any support from your other siblings?

oil painting · 31-05-2008 7:58pm

HI... what an unfortunate situation for you and your husband to be in.... the not knowing must be driving you mad... i have dealt with very difficult parents myself.... and i found it incredibly hard to be my own person around them espicially when they refused to meet me half way-it was either-conform or they didnt want to know....the older i got the less i was able to put up with having to play my old role in my family i realised i wasnt living my own life....

i went to therapy and learned how to put myself first for once,it was the best thing i ever did for myself because i am now very happy-free and spirited... i have a brilliant relationship with my BF and we feel we are our own family... if i had any advice for you i would say please put your needs and your husbands first.... im sorry if this sounds cruel given the reality of your situation but you deserve to be happy too,and i am concerned that you are taking on too much for you and your future family....saying no is very difficult but it is very important for you and your life....

herya · 02-06-2008 1:31pm

It's so tough... I don't know if random thoughts from a stranger can help you in any way with it, but from a distance it looks like your parents' actions are really harmful to your family. I wouldn't have any qualms trying to go behind their backs if possible (is their approval needed officially? can you go without it?) and I agree that you should try and have your siblings tested - is it only you who needs to know the odds, are there any other members of the family who may want to have children soon? - but even if you succeeded you'd probably face the risk of having an affected baby anyway. I'm afraid that if you can't eliminate it anyway you'll have to research your choices if you decide to have a baby, can the condition be recognized early, would you be able to terminate the pregnancy if it is, is adoption or using donated eggs and option for you. I wish you best of luck with whatever you decide.

TirEoghain · 02-06-2008 1:53pm

Can you speak to any of your siblings behind your parents back. Assuming that they are not under the care of your parents, they can make up their own mind whether to help you or not.

I would definitely be trying to push forward on this without any communication with the parents. If they never respected your wishes, now is not the time to be respecting theirs.

TirEoghain · 02-06-2008 1:56pm

Stress Queen wrote: »

Hi Herya,

With regard to convincing my parents again, it really is not an option, let me put things in perspective. My mother decided one day to discuss something very personal about me with a neighbour, she then told me she did this, when I got upset and challenged her, my parents actually kicked me out, i'm not joking.

This is the point where a parent gives up any right to tell you what to do, and irreversibly so.

challengemaster · 02-06-2008 2:21pm

Stress Queen wrote: »

I feel under such pressure also because my husband is highly intelligent, he's a Mensa member and all of his family are the same, so I keep thinking if we have a child with a mental handicap I have to live with this knowledge for the rest of my life knowing it's my fault and I feel like that's what others will say too behind my back. I am so torn between wanting to have a child with my best friend and my husband who is one in a million but on the other hand I am so scared of history repeating itself. So that's it. I would be very grateful if anybody would give me their honest opinions as to what you would do if you were in my shoes?

You really need to discuss THIS in particular with your husband. IMO if you're not willing to try for kids because his family is smart/etc and you don't want to ruin that.. there's a bit of a problem there. You need to get over this for a start.

What would you do if you found out that there's a high probability of a reoccurance?

Nevyn · 02-06-2008 2:33pm

Talk to your gp and get a referal to a gentics cousellor.
They deal with people who have a reasonbily high % of passing on a gentic condition to any children they may have.

As for having a child who is non nerual typical ( what was once called retarded ),
that is not always the horror story people thing.

Autism is a spectrum, with the right understand and training and supports most children will eventually meet thier developmental goals and will live full and pretty normal lives.
They just take thier time and go about it in different ways.

Yes it can be stressful, yes it means learning to understand and support them but there
are thankfully a lot more understanding and support these days.

The world would be a very dull place if everyone was neruo typical there would have been no einstine or pablo picasso or Da Vinci.

davyjose · 02-06-2008 2:38pm

challengemaster wrote: »

You really need to discuss THIS in particular with your husband. IMO if you're not willing to try for kids because his family is smart/etc and you don't want to ruin that.. there's a bit of a problem there. You need to get over this for a start.

What would you do if you found out that there's a high probability of a reoccurance?

I agree with this. Firstly, what if the kids have inherited some form of handicap unrelated to anything in your family? Or what if he is a carrier of something? Unlikely, but possible, all the same, would you blame him?

You need to talk to him about your fears, and he needs to reassure you that this is part of the chance people take in life, and tht he would in no way blame you. That's his #1 job in this issue.

davyjose · 02-06-2008 2:42pm

Thaedydal wrote: »

Autism is a spectrum, with the right understand and training and supports most children will eventually meet thier developmental goals and will live full and pretty normal lives.
They just take thier time and go about it in different ways.

The world would be a very dull place if everyone was neruo typical there would have been no einstine or pablo picasso or Da Vinci.

Or Isaac Newton, Charles Darwin, Michaelangelo.....

Trinity · 02-06-2008 2:53pm

Different scenario but similar circumstances.

My brother has Downs Syndrome, my cousin has Downs Syndrome on my fathers side, my uncle is mentally well i dunno retartded? Sorry if not PC. Also on my fathers side.

I also had a cousin that had Downs syndrome, on my mothers side, he sadly passed away at a few months of age. The same aunt that lost this baby has an autistic son.

They say its not hereditary. I got pregnant, took my chances. I did not have tests, I did not have an amnio. Result - 2 beautiful healthy perfect baby boys.

WOuld I have decided not to go ahead if i thought there 'may' be something wrong, no, I would have gone ahead anyway as they would have been my children and i would have loved them just as much. My partner was very supportive and also did not mind (bad term sorry) if they were not 'perfect'.

My brother will also come live with me and my family should anything happen to my folks, was I asked to? No, I see it as a given and its what i want.

I really think if you want children to go for it. You're husband I am sure does not expect the 'perfect' child. In fact even without your family history, there is in every pregnancy the possibility of something going wrong. In essence what you are saying is unless you are given good odds at having a 'normal' baby you are willing to miss out on motherhood and bringing new life into the world. Anybody that doesnt want kids i say fair play, its better than bringing an unwanted child into the world, but you want kids.

Damn what his family think by the way when you hold that child in your arms you wont give a damn what his IQ will be once hes healthy.

Best of luck with your decision.

Reku · 03-06-2008 8:36am

Stress Queen wrote: »

At some point in the future I will be one of the main carers of my mentally handicapped siblings, this will involve them living with my husband and I, not to mention wanting to be there for my other sibling who has now got children with autism so I really feel like my plate is already quite full. I really do want children but to be honest I don't think I could cope emotionally if the same thing happens to me. I feel under such pressure also because my husband is highly intelligent, he's a Mensa member and all of his family are the same, so I keep thinking if we have a child with a mental handicap I have to live with this knowledge for the rest of my life knowing it's my fault and I feel like that's what others will say too behind my back. I am so torn between wanting to have a child with my best friend and my husband who is one in a million but on the other hand I am so scared of history repeating itself. So that's it. I would be very grateful if anybody would give me their honest opinions as to what you would do if you were in my shoes?[/SIZE][/FONT]

Well while it will not reduce the fear of the emotional drain and the difficulties one thing worth keeping in mind is that autism does not perclude exceptionally high intelligence, in fact Mensa apparently already have members with autism. There are also a large variety of forms of autism, while some can create problems for the person's social development there are other, far less severe, forms which pass relatively unnoticed.

What would you do?

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