Diagnosis.

(40 Posts)
Moomoomie Tue 02-Oct-12 20:08:08

Today, we had a meeting with the genetics doctor who gave us the diagnosis we were waiting for, for our youngest two daughters.
I am not sure how I feel, it has been a long time coming and in the end was a bit of an anti climax.
So, I am the mother of two children with a totally preventative disorder. Foetal Alcohol Syndrome.
I know they are still the same children and I love them unconditionally but I feel so sad for them. Their birth mothers addiction was more important than the babies she was carrying.
Don't really know why I am writing this, some support and sympathy would be nice.

Oh Moomoomie I am so sorry. It must be a shock and yet not a shock, if that makes sense!

All I can say is that yes, they are the same children and you love them. Knowing this information may one day be helpful in some small way to you and to them so even though it is painful at least you have that knowledge.

Although it is tough knowing what the situation is may help in some small way to provide advice, there may be future breakthroughs in how to make things better for children with Foetal Alcohol syndrome.

I'm so sorry that their birth mum wasn't able to control her addiction or whatever caused her to drink.

Lovesoftplay Tue 02-Oct-12 20:17:34

I don't really know what to say, but didn't want to read and run. You are right, they are still your beautiful children, with or without a diagnosis.

Sending you hugs x x

Hi Moomoomie, I am sorry to hear of the girls diagnosis.

I used to be an adoption panel member and we had a large number of children who would have or go on to receive a FAS or FAE diagnosis. It is so sad as it is preventable.

You may be entitled to more support for the girls financially depending on the degree to which they have been affected. The SS team of the area the girls came from need to know in case birth mum has or has had any more children.

Do the girls get or need any educational support?

There are some websites providing support. Thefasdtrust is the one I know.

Be easy on yourself, even when you expect a certain diagnosis it can still knock you off your feet.

Lilka Tue 02-Oct-12 20:23:10

<hugs> to you

DD2 has many symtoms of FAE, but a diagnosis can't be made because there's no hard evidence of alcohol consumption (i mean, we all know she was exposed to alchohol, but it wasn't documented by medical professionals)

They are the same daughters as they were yesterday. 'Labels' can feel really daunting, but it won't change your day to day life. Hopefully however, an official diagnosis will lead towards better support and recognition of their needs

Much sympathy and support from over here xx

Moomoomie Tue 02-Oct-12 20:34:32

Thank you so much for the support.
Maddie.... We have also adopted their sister too, she is not affected by FAS, they also have an older brother who is also not affected. Their birth mothers drinking and drug use got progressively worse with each subsequent child.
Dd3 who is five years old has additional support at school and we have TAC meetings etc. so do have support with her.
Dd2 who is 11 has had more of a battle with her education support, so I hope this will help her now she has moved up to High school.
We are contemplating the forms for DLA as we were told at the last TAC meeting to apply for this.

DameKewcumber Tue 02-Oct-12 21:15:30

I'm sure the cold hard inevitability of a diagnosis is hard to swallow even though as you say you love your girls and today is really no different to yesterday and tomorrow in fact may even be easier with a diagnosis in place. I think one of the trickiest things emotionally that adoptive parents have to negotiate is trying to make birth parents accessible (emotionally if not physically) and helping children process their start in life whilst simultaneously being on the front line of the terrible damage they inflicted on their and our own children.

I'm 100% sure its why a thread on here some time ago when tits up when a social worker on here told off a adopters for bag-mouthing a birth parent. BEcause this is a safe place to express how you feel and to process it yourself and we are not perfect and its hard to be charitable about actions that have hurt your children however understandable those actions might be.

Sorry thats a bit of an essay I think blush

I hope things do because slightly easier for you all with a diagnosis.

Devora Tue 02-Oct-12 22:54:25

Oh Moomoomie sad. My dd came to us with ?FAS and I watch her develop with my heart in my mouth. She was also born with neonatal abstinence syndrome and at times it is hard, really hard, not to feel angry with the bm. I agree with what Kew says about it being ok to use this as a space to vent. We will understand.

Moomoomie Wed 03-Oct-12 10:21:13

Devora.... I remember you mentioning that about your dd before. Dd3 also suffered with abstinence withdrawal. We were told her history when she came home, so the diagnosis is not a shock, as she has been showing traits from an early age.
I am not normally cross with BM normally I really feel for her and the life choices she made. I often think " there but the grace of God go all of us"
On a positive note we were told that early intervention and a loving stable home life were all positive factors (of course)
I agree I find this section of mumsnet a safe place to rant, sometimes forgetting how many people will be lurking!

Maryz Wed 03-Oct-12 11:45:57

It is hard to get such a diagnosis, because it increases the worry you have about them. But in reality a diagnosis can be a good thing, because it does increase the chances of getting help and support.

When ds1 was diagnosed with Asperger's I was half gutted, and half relieved. Because I knew he was unhappy and troubled and disruptive and many other things, and having a diagnosis meant that I could give teachers etc some guidelines as to how to deal with him. Sometimes having a piece of paper, a reason for their difficulties makes it easier to get other people to listen and to take you seriously. Do apply for DLA btw - I found having a little extra cash occasionally to do things just for ds was great - as well as having to pay for medical stuff.

I have also felt anger at times towards my son's birth mother - she did a lot of things differently to how i would have done them (smoked, drank, no antenatal care etc) and he has had health problems (chest infections and asthma), suffers from depression and other mh issues which I suspect may be "inherited". But he is still him, he is the same person and I love him, so mostly I can separate his life before me from his life after I came into it.

It is good to be able to shout and roar here occasionally though.

Ladyofthehouse Wed 03-Oct-12 12:42:42

So sorry to hear that. It must be quite a shock to have heard the actual diagnosis.

Good that you can see and have been told that the loving stable home life you are providing is going to make something of a difference.

You're right that they are the same daughters you had yesterday and you're still their mum who can help them with this. You were matched with them for a reason.

I can understand your anger too - I think thats completely natural. You must rant away!!

WendyGx Wed 03-Oct-12 14:57:39

I can only imagine that your mind must be racing and this must be a shock. I only know a little about FAS/FAE and that it does range in 'degrees' so your worst fears may not be cast in stone. What I do feel that I know more certainly, by reading the words you use about your children, is that you clearly love them dearly and are so obviously there for them, so I have no doubt that they have someone on their side to help them with this.

I know support can be available for them and it seems you have mentioned some. I hope you will also be given the support you need too. Remember you need to nourish yourself in order to nourish others. If this is a rant, a cry, a moan, a post here, or a cuddle - feel free. Take care

DameKewcumber Wed 03-Oct-12 15:36:30

Interestingly (or not!) FAS/FAE wasn't really addressed on domestic prep courses locally when I did an intercountry one. No-one in the UK seemed to talk about it much as being a real possibility. Mind you this was probably 8 years ago now so maybe things have changed. It was a major risk factor in some intercountry adoption like Russia and Kazakhstan was a bit of an unknown quantity as no UK person had been known to adopt from there before. As a result it was something that was covered fairly well on our course and something that was considered specifically when doing adoption medicals. I mentioned it at the time to some domestic adopters and they just looked at me blankly and obviously hadn't really considered it.

Not that that is of any use to you now!

DameKewcumber Wed 03-Oct-12 15:37:37

Sorry not implying that you hadn't considered it but generally how in the past it doesn't appear to be something that was discussed when it appeared to be the number one concern when adopting from Russia.

Ladyofthehouse Wed 03-Oct-12 16:37:44

DameKewcumber - It was discussed at great length on our course and also by our SW a lot during our home study.

however it was always in the way that 'we don't know much about it but you need to be prepared for it being very likely'.

It was very hard to find any more information out to be honest.

DameKewcumber Wed 03-Oct-12 17:25:16

I wonder if thats a recent'ish thing in the UK - its been a long established problem in Russian adoption due to the country's alcohol problem.

Moomoomie Wed 03-Oct-12 18:56:00

We attended our prep course in 2000, so many years ago and FAS was not mentioned at all, nor was attachment issues... But that is another thread!

We have always been concerned about dd2 and her concentration issues etc but never got much help or support. It wasn't until we adopted dd3, birth sister, and she showed many more traits and has behavioural issues that we were listened to. One paed in particular made it out to be my fault that dd2 had her problems!

It is interesting that FAS is talked about a lot more in the States than over here.
Our paed says that they do not see many cases of FAS here... We live in a sleepy town in the east of England. I pointed out that it would only really be adopted parents that talk about FAS, even though it is becoming more of a problem in "middle class" families.

Wendy..... Thank you for your comments, i find it difficult to express myself in type written words.

Thank you all again for the support.

Maryz Wed 03-Oct-12 19:02:11

I think part of the problem is that there is such a crossover between "diagnoses".

I sometimes wonder whether ds1 has Asperger's at all, or whether he possibly has ADHD, or ODD or is bipolar, or has RAD, or possibly some form of syndrome that he was born with.

And the crossover among adopted kids between all of these is even more complicated by the often chaotic parenting they have had in their early years. So it can be difficult to put your finger on what is actually the issue.

Of course, school like a nice little box to put children in, so they can give them carefully thought out (and minimal hmm) help to "fix" them, which not surprisingly doesn't work.

I suppose our job as parents is to love them, fight for help for them (often the hardest bit) and try to unravel how to support them as best we can as they grow up. It can be such hard work, though.

Moomoomie Wed 03-Oct-12 19:22:51

Exactly Maryz. I think with any of these disorders that are neurological they do all overlap, dd3 has many traits of ASD and ADHD so could easily be diagnosed with one of these.
I suppose the health professionals can only go on the history and the facts they have in front of them.
As you say, our job is to love, protect and fight for them... Like the tiger mothers we aregrin

Moomoomie, I'm so sorry for your children, that's really tough. I'm sure it will take you time to process this information.

Our foster daughter (kind of, we did respite care for her over a 10 year period) was a very difficult child - I taught her for 2 years. She was eventually diagnosed with, among other things, attachment disorder. While having the 'label' didn't change her behaviour - although it meant she finally got support in school - it did make a big difference in how I viewed her behaviour. It didn't push my buttons the way it did before, it meant I could stand back a bit from the behaviours and made me more patient. Maybe this will be a positive thing in a way, a way of getting more help as others have suggested, and it may help you to understand their behaviours more.

I'm so sorry, it's tough for you all.

jenny60 Wed 03-Oct-12 19:58:03

So sorry moomie. It's a risk so many adoptive parents take, isn't it? That's no comfort to you course, but try to remember that you will give them so many more opportunities to live fulfilling lives despite the diagnosis than they could ever have had.

I try to empathise with my ad's birth mum but my blood does boil at times when I think of what she was put through. Please vent away here.

magso Thu 04-Oct-12 11:30:52

Firstly treat yourself gently. Any diagnosis is a shock to the system even when anticipated. It takes time to soak up information so don't feel you must be an expert all at once. Diagnosis can be the start of understanding (from others but also ourselves) and suitable support. I was surprised to feel low after Ds(now 12) was dxed autism/SLD/ADHD since I already was fairly sure and was past the angry stage. However in the long run it was the beginning of getting more suitable schooling and other support and us being more sure of our parenting. things like why he could not learn certain skills fitted into place (he needs lots of overlearning).
I think adoption adds the extra feeling of needing to be super tigers for our children!

Moomoomie Thu 04-Oct-12 13:41:57

Just had another appointment with the paed today, who has just attended a Foetal Alcohol study day, she apologised for not recognising the symptoms before, especially with dd2 who is 11, at long last she has recognised that the girls toileting delay is down to FAS.
Apparently 70% of adopted children will have foetal alcohol effects and they need to look closely into the history.
It's amazing how it has all come together in the last week, the paed going on the study day and us seeing the genetics team.
I feel we can move forward now and get the support in place for dd2 who has always struggled with her concentration and memory.

I'm so glad you're feeling calmer, Moo, and that your dd2 will get some supports.

magso Fri 05-Oct-12 09:44:19

Can I PM you Moomoomie?

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