Advice please

(26 Posts)
MrsDeVere Sun 09-Jun-13 17:59:19

WWYD
Some of you will know a fair bit about my background so excuse me if I do not reveal too much on an open forum.

DS finally had a genetics appt last month. Initial bloods (micro array) are clear but they only look at chromosomes, not genes.

I was expecting to be seen and then discharged as no further action.

But geneticist took history and I have her report. She thinks that DS probably does have a genetic disorder of some sort. It will be hard to diagnose without parental genetic material but she is trying to get him on a study so at least some more tests can be done if not the whole gamut.

Anyway. Do we tell the family? All birth uncles and aunts now have DCs. There are estranged partners too. My feeling is that we have a responsibility to share but family are so fecking rubbish at addressing developmental and medical issues I doubt they will do anything.

I am also reluctant because frankly I cannot be arsed to deal with them for a single fecking second.

I have told OH he needs to think about contacting his sister but I am not sure how much she will take in.

Once again I feel like I am dealing with the legacy of their neglect.

Moan, moan, whinge, whinge.

TeenAndTween Sun 09-Jun-13 21:20:55

OK, I don't know you background, but you are the reason I'm here. when i first stumbled on Mumsnet the gymbalow saga was just getting going. smile (that was you wasn't it?)

I am guessing they might know there is something amiss with your DS but not that interested?
In which case, you really have nothing more to tell them until you have some actual facts? Maybe??

I don't know really, but saw no one had responded.

MrsDeVere Sun 09-Jun-13 21:29:44

ah thanks.
Our DS is adopted from within the family.
There are a lot children who have issues similar to DS's within the family.
No one seems to do anything.
And now the kids are having kids and its just going on and on.

But I can't fix it. I just feel that now we have this information we are burdened with some sort of responsibility.

Or not?
Gah!

Yes the fecking gymbalow was me grin

Lilka Sun 09-Jun-13 21:33:31

I guess I would wait until I had more definite information or preferably an actual diagnosis before telling anyone

And I think I would tell family - although of course I don't know what your family are like - just so whatever happens later, you can say you never his any important health information from them. Maybe (probably) they will forget you told them and not bother to follow up,but you never know, sometime in the future a doctor may mention genetic disorders to them and they may remember what you told them?

Can you get away with one quick phone call to them? And then disengage again?

MrsDeVere Sun 09-Jun-13 22:14:18

That might take years lilka. It a complex process and there might never be a diagnosis.
It is not likely to be a condition like fragile X or kleinfelters (quick examples). It is more likely to be one of those things with a number rather than a name.

Because we do not have parental DNA it will take even longer.

So I don't think waiting for a dx is an option really. We either tell them now or not.

There could be another 10 kids by the time we get any results.

I won't be telling anyone to be honest. Its up to OH. But its something we need to discuss.

MrsDeVere, so sorry to hear about this medical situation.

Tell them, (IMHO).

You and DH/DH on his own write out something that says it all in the exact way you want to say it then send it or email it or DH read it down the phone to each one you need to. Then relax.

Who knows if they will use this info or not, but maybe one day it will be useful and although there are family problems (I don't know what they all are) there will be other children born to the family and maybe someone somewhere will use the information for good. That is why I would say to send it in written form if the family members can read English (not making any judgments on people's ability but I know lots of people struggle with reading in my own family).

A while ago I spotted something I was not sure about and wondered about telling NSPCC (Totally different situation but I think you know where I am going with it), I umed and ared and felt crap. I made a phone call to NSPCC. They put my fears to rest. All done. RELIEF.

I just think for your own peace of mind and for that one family member who might use the info for good, it is worth it. If you don't want to give away your address or number to distant relatives etc you can always just send the letter with no return address on it or make calls from a pay phone (if you can find one).

All the best.

Meita Wed 19-Jun-13 17:02:58

Stumbled upon this rather late, but just wanted to say - there is a right of not knowing. Some people would rather not know if they had a genetic disposition for something. But if they do want to know, you can't really withhold it.

Have you been in touch with them since posting this? What did you do?

If you haven't yet, you could maybe start by phrasing it as a 'there seems to be a genetic issue - it might affect you and your children as well - do you want to know more about it?' sort of thing.

Devora Wed 19-Jun-13 22:52:13

Hi MrsDV, don't know how I missed this before. Yes, I think you should tell them. I understand why you don't want to engage in a long round of phone calls with some of them, though. Would it work, do you think, to write them all a letter setting out the facts that are available, and inviting them to ring you if they want to discuss? Then hopefully you will be spared some shock reactions.

Your poor lovely DS. I hope this will help get him and you some useful information and hopefully resources.

FamiliesShareGerms Thu 20-Jun-13 06:07:26

I missed this one too - but Devora has beaten me to it to post what I was going to say...

Have you decided what you are going to do yet?

MrsDeVere Thu 20-Jun-13 07:52:00

Hello
I have been on to the adoption support team and explained situation.
Apparently they called back this week but the number the SW left was for a children's centre in a different borough so I have no idea how that happened confused

I will give them a call today. The SW I spoke to was going to chat with her manager. I am pretty sure they will advocate disclosure. Its just how to go about it.

OH is going to have to step up and sort this out really. If he wants to do it without SS involvement he is the one who will need to call his sister (DS's GM).

Trouble is I have no idea how much she will take in.

Fact is..they [immediate birth family] pretty much all process information in the same way that DS does.

Now we know why.

Kewcumber Thu 20-Jun-13 12:20:20

Sympathy here but no practical advice. Sorry!

MrsDeVere Thu 20-Jun-13 13:09:11

Its nothing urgent.
Just one of those things.

It does make a little bit annoyed in a way. Like I am the one taking responsibility for this thing when it should have been done years ago.

But its not the worse thing we have dealt with smile

Lilka Thu 20-Jun-13 13:31:02

Like Kew, I have sympathy but no helpful advice. I would lean towards disclosure with your DH doing it, and not getting too involved. Best of luck to you

MrsDeVere Thu 20-Jun-13 15:04:42

Just had a letter to say DS has been put on a massive national study. I didn't think he was eligible for it due to lack of parental DNA.

They can get samples from spit kits.

There could be a chance BM would agree to doing one. Depends what mood she was in.
The likelyhood is that she would attach some condition to it and we wouldn't be able to agree.
But she is 10 years older now, there is always a chance she would do it just for the good of DS and her DD.

Devora Thu 20-Jun-13 20:37:11

It's a whole new level of continued involvement and complication, isn't it? I do understand why you have been ambivalent.

MrsDeVere Thu 20-Jun-13 20:47:47

Its just another excuse for things to rear up.
I would love to think it was a chance for a new type of relationship. Unfortunately BM has something very like severe RAD.
Its impossible to trust her.
Her rules are totally different.

I am willing to make tentative steps. But we will withdraw immediately there is any hint of trouble.

We would have to insist any contact went through SS and would have to start with Letterbox. She will not agree to this. It has to be on her terms.

But I don't mind giving her the opportunity to prove me wrong.

It just has to be with a buffer. We have been through too much to be inviting trouble to our door IYSWIM.

But the basics are that we pass on information whether that be through birth grandmother or via SS.

Maryz Sat 22-Jun-13 14:07:22

Hi Mrsdevere, I've only just seen this.

I understand your concern, but <stern look> your responsibility begins and ends with your ds (and your other children).

And it is entirely possible that this genetic link is with his bf, not his bm's family, in which case they don't need to know anyway. If I was you I would get ss to inform his bm of the possible link, suggest she might want her dd tested and ask for a spit test. That's it. She might agree for the sake of her dd, and if you test and it isn't a link to her, then there is no need to tell anyone else.

Either way, you owe her nothing so don't contact her yourself. You don't want her having any hold over you (Lilka's recent experience would put anyone off allowing adopted children contact with their birth parents hmm).

As an aside, when ds was diagnosed with Asperger's that made a lot of sense to us with what we knew about both his birth parents. So we decided to contact them to let them know, in case there was a genetic link and they were going to have children in the future. Neither acknowledged our contact at all, so presumably they don't want to know.

MrsDeVere Sat 22-Jun-13 14:14:33

Thanksk maryz.

But J is so like his bm I am pretty sure there is a massive probability that the genetics lie there.

I know what you mean. I have already discussed with OH about what we will do if we do decide to involve his family.

If we ask her to do a test she either does it or not. No strings. No conditions. She does it and sends it or she says no and done.

It would make things very slightly easier to have some parental DNA but ideally they want both BM and BD and we will never have that.

I suppose another reason for letting them know formally is that if we don't it means I will have to NEVER mention it to any of the family members I talk to. That is unrealistic.
We chat about the kids. They ask how J is doing. I cannot have any 'dirty little secrets' when it comes to my boy. I refuse to live that sort of life.

I won't even be able to to mention hospital appts etc on FB. Not that I go into detail but I am not going to live in fear of a slip up IYSWIM.

Maryz Sat 22-Jun-13 14:22:03

Fair enough.

You tell them if it makes life easier for you not them.

The other thing - can you mention the test for her benefit, and her dd's, not J's? So as far as she knows, he has a diagnosis, the test is just for the benefit of any other children in the family who might be affected.

That way she isn't doing you a favour (which seems to be something she is never willing to do hmm).

MrsDeVere Sat 22-Jun-13 14:34:55

Hard to predict what she is going to do. Well impossible actually.

I don't know if its worth putting any slant on it really. DS has a number of dx but not a genetic dx IYSWIM.

The idea is to find out if his numerous dx are features of a syndrome or not.

BM will never admit that she or her DD have problems. The same way her mother ignored all of hers and those of her siblings.

She might do it for the attention though. She might enjoy the contact from SS. She might be curious, she might be worried, she might see it as a route to money via DLA or a reason that can't work (things must be getting tough, she has never had a job and the DWP must be on her back all the time).

Who knows? I don't really care anymore.

Sigh. Its never bloody simple is it? smile

MrsDeVere Fri 28-Jun-13 18:23:31

I have finally managed to have a proper chat with SS and suffice to say I will NOT be involving them any further.

I am so wound up I could spit. They have really pissed me off and triggered off all sorts of unpleasant memories from all those years ago.

I am disappointed because I have always found Post Adoption pleasant if not particularly helpful.

I am tempted to send an email telling them that we have decided we no longer require their input. I need to keep reminding myself that DS is OUR son and not a LAC and they can't take him off me and I am allowed to make decisions without them now.

Devora Fri 28-Jun-13 21:52:14

What happened, Mrs?

MrsDeVere Sat 29-Jun-13 12:28:15

I got a call from a SW. I didn't catch her name.
She started off by telling me how she had been trying to get hold of me for ages (yep I know, I had phoned them several times).
When I said she could have spoken to my DH, DS's father, she went into this long spiel how she couldn't do that because 'you never know who you are talking to'.
I am willing to bet she is a new recruit, fresh from fostering or LAC hmm

That is a by the by. But she spoke over me. She wasn't chatty, her tone was very high handed. She put me on edge straight away.

She had no idea what our situation was. She didn't understand about the implications of the genetic testing, what a genetic study is, what any of it meant really. That is fine, I wouldn't expect her too BUT she then proceeded to tell me exactly what THEY would be doing and wha we were NOT allowed to do.

We are talking about OUR son, adopted from DH's family. There are no CP proceedings in place, we are not in trouble, we just phoned up for a bit of a chat and to explore the options.

I raised the possibility of DH having a chat with his Dsis. SW told us we must not do that and this could only be done by them via a formal letter.
I asked her why and she said 'so it is all accountable. It has to be done by a professional so its all accountable' confused

I told her that getting a letter like that can be very frightening. And she said 'well yes that is why we would have to do it very sensitively'
Good luck with that. BM has limited literacy skills and severe processing issues. How the feck is she going to deal with a letter like that from an agency she hates and distrusts?

I briefly mentioned that it was important that BM knew that there could be no conditions attached to her providing a sample and SW said 'Oh would a sample be helpful?' FFS and 'well that has nothing to do with this' confused

It is hard to explain why it was so crap. Her tone, her manner, talking over me, refusal to listen to me when I clearly knew more about some of the issues than her and yet again the way kinship carers are not understood as a different entity to other adopters.
Plus her trying to dictate and take over the situation when we had never asked for this.

Its all a bit of a rant and it probably sounds a bit 'whaa?' but it pissed me off.

We are not children. We are grown ups who both work in the field of disability. We are in contact with the majority of DS's birth family because HIS birth family is DH's birth family hmm

I sent them an email telling them we no longer required their input and why. I made it clear we did not give them permission to share any information with anyone.

Well done if you read all that blush

Devora Sat 29-Jun-13 18:30:21

I get it.

I would be fuming.

Although we had a lovely social worker, the entire experience of adopting has left me sensitised to being patronised and bossed about by social workers - a feeling like, "YOU ARE NOT THE BOSS OF ME ANYMORE".

And really, in a situation like this, you say you can't blame them for not understanding the nuances but in that case what are they for? They're SUPPOSED to be able to quickly grasp complex information and its implications for real lives.

So sorry they were no help. What are you going to do now?

MrsDeVere Sat 29-Jun-13 18:40:54

Oh thank you Devora. Thank you for understanding.
I am still upset. Not crying or anything but I can feel its all in there.

I never had the chance to process what happened to us when DS arrived out of the blue and all that we went through trying to deal with birth mum, social services and never knowing what was going to happen next.
DD got sick a year after he came to us and that took over.
It was so stressful and we (particularly me) were treated so badly. I guess it affected me more than I care to admit.

Anyway. Sending the email helped. It was polite but anyone with any wit would notice the angry undertone. If they call me I will tell them I didn't like the way things were being handled and they way my experience and insight was dismissed. But I suspect they will ignore us. They are a small team and busy.

I don't really know what to do next. I suppose the only real option is for DH to have a chat with his sister and go from there.

It could all be a damp squib or it could go off like a rocket. But it is what it is. DS very probably has a genetic condition and his family have a right to that information.

Its a shame we couldn't trust the professionals to help us with that.

I might email the LAC paed. She was always really nice and is much more likely to have encountered this issue before.

Devora Sat 29-Jun-13 18:55:05

You had a lot of trauma over a prolonged period - and you were not in control of any of it. I'm not surprised this situation is taking you back to the feelings of that time.

Be gentle with yourself.

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