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 Cote D'Ivoire 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 Cote D'Ivoire 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?

Moomoomie Fri 05-Oct-12 14:34:18

Have replyed to you Magso. X

Moomoomie Sun 28-Oct-12 18:13:41

Quick update...... One of the positives for the diagnosis is we were able to claim and have been awarded DLA for dd3.
It means so much more than the money.
I may now suffer the dreadful form and apply for dd2.

KristinaM Tue 30-Oct-12 16:16:22

Sorry I missed this earlier momoomie . Well done on persevering through the process.im sure , as others have said, that having the official dx will allow you to access more help for the girls. Or fight to keep it sad

Don't feel bad about feeling angry with DDs BM. Emotions are neither wrong nor right, they just are. It's what you do with the feelings that are right or wrong. I know you have a hard journey ahead as you need to explain to the girls, in time, why they are the way they are.

As to the criticism on another thread from a SW-all I can say is that it's easier to understand why your client has injured another person ( who you have never met) than to understand why soemone has brain injured your own child. My experince is that SS are not exactly forgiving when soemone disagrees with them, let alone physically harms them. When I see a Sw on here justifying why someone has injured or killed their child, I will be willing to listen to lectures from them.

This is not intended to be disrespectful to all the wonderful parenst who ARE able to forgive soemone who has killed or injured their child. I have the utmost respect for them

So vent away all you like here.

Great news on the DLa. I agree it matterS far more than the money and I think that everyone entitled shoudl claim it for their children. Even if you don't " need" the money , you can put in into an account for your child when he/she is older. Somehow it's an official recognition of what they have been through and the wrongs done to them, by an individual and by the system. A bit like Criminal Injuries compensation payment.

KristinaM Tue 30-Oct-12 16:21:54

On a practical note -don't forget to apply for your railcard ( unless you are on the lowest rate for the care component )

Moomoomie Tue 30-Oct-12 19:56:01

Thank you Kristina. I'm afraid you have lost me though about the other thread you mention.
Also I have not heard about the railcard, I will have to look into that.

NanaNina Tue 30-Oct-12 20:24:00

Moomoonie me too so sorry that you now have this diagnosis, but as others have said, it is probably better that you do have it, so that you can best help your daughters, and get educational support for them, and financial support.

I am the social worker who got cross with adoptors for calling BMs insulting names but I will return to that later.

I placed a baby for adoption some 21 years ago and the mother was an alcoholic. The baby was removed at birth and placed for adoption at 7 months. I came across the adoptive parents (as they still fostered for the LA) many years later and naturally asked how the child (S) was and learned all about the fact that she had FAS and the troubles that they had had with her over the years, but loved her immensely. I regret to say that I knew nothing about FAS at all at this time and had never even heard of it. This was in the late 90s. I felt very sad for the adoptive parents and S for all that had happened. She was 23 when I had the chance meeting with the adoptors and was still causing difficulties.

Fast forward the tape to 2003 and I was working independently and was assessing some relatives to care for their niece (A) (a baby of 8 months who had been removed from the mother, who was addicted to drugs and alcohol). As part of the assessment I went to visit the baby in the foster home and the minute I saw her, she reminded me of (S) who I had placed all those years ago. It was extraordinary, same mishappen head, very thin top lip, giving the mouth a "fishy" appearance, very tiny for her age (small for dates). I mentioned this to the foster carers who were very experienced and had just received an OBE for fostering and they said they too had wondered about this because they had fostered another baby who looked exactly like A and her mother was an alcoholic.

The babay (A) had of course had all the medicals given she was a Looked Aftered Child and no concerns had been raised. I contacted the HV and got short shrift, saying there was nothing wrong. I got a similar response from the GP and the sw for the child had never heard of FAS. I went on to google and found a great deal of information, and at that time some 80% of children in the UK were not being diagnosed, whilst of course in the states it was diagnosed frequently. Fortunately the guardian for the child was someone with whom I used to work, and we had a mutual respect for each other. She insisted that the LA pay for an expert from Glasgow to come and see this baby (A). This he did and confirmed that she definitely had FAS, but what he could not say (as this of course is a syndrome) what her future would be, as it would only become clear over time. He said that she could be anywhere from completely normal to severely affected, and cautioned that often FAS children are just seen as defiant obstructive pupils in school as they do not appear to have learning difficulties as such.

I don't know what happened to baby A because the aunt and uncle, quite sensibly I think withdrew their offer as they already had 3 young children under 5.

I do hope that you get all the support you need for your much loved daughters.

NanaNina Tue 30-Oct-12 21:19:31

Dame Kewcumber as you will know from my name I am the social worker who took issue (rather than "told off" but I can understand that's how it felt) with some adoptors who called the birthparents "pond life" and there was an ensuing exchange of posts by adoptors whomade their feelings very clear to me and I can't recall now but I think I probably tried to defend my position. In retrospect I can see why my defending the birthparents caused offence to adoptors. I suppose it was because I knew what awful lives the birthparents had endured. However I always told adoptors and foster carers that it was only natural for them to have such feelings and they should give vent to them, so long as this wasn't in front of the child. I still believe this, but for some reason (I think because of the anonymous nature of MN) I felt angry at the expression "pond life" and gave vent to my feelings about the natural feelings of adoptors and foster carers.

I apologise for this and realise it was quite wrong of me to react in the way I did.
I think I also upset you by making disparaging comments about inter country adoption and again I apologise for this, and can't remember what took me off in that direction.

Kristina I suppose the post to Kewcumber says it all really as I know you took great offence at my comments about birthparents and inter country adoption. I do feel however that you have a very low opinion of social workers in general and that my comments have "fuelled the fire" so to speak. It seems that you have construed my comments as "lectures" and I didn't mean my posts to sound like that at all, but I can of course accept that was your perception. I wholeheartedly accept that anyone (social worker) or not would feel very differently if it was their child that had been brain damaged or suffered serious injury through the action of the bps.

I can only apologise, and hope that the "hatchet" can now be buried.

shockers Tue 30-Oct-12 21:54:55

Hi all,

It was me who caused the upset by calling DD's BP 'pondlife'. There are days when I really felt for them, losing their babies. There were also days when I dispaired, that was one of them... there have been others, many others.

Despite the difficulties our family has experienced, we love our children and will always support them.

The BP were given lots of letters and photographs through the mailbox that was set up, we put a lot of thought into striking the right balance. We received very little in return, and what we got was so questionable that some of it was withheld by SS. Eventually it stopped from their side altogether.

My problem with the children's BP is this. This was a wholly preventable and life changing situation that no longer affects them... due to their ongoing behaviour, not DD's FAS.

DD's condition has an huge impact on her life and will continue to do so until after we've gone. We will attempt to put into place as much support as we can. We hope her brothers will always look out for her.

It also has an huge impact on our family life, the stress has made me ill.

moomoomie, all children with FAS have shades of the symptoms, so please don't be disheartened by my post. DD also has attachment disorder, due to neglect. She is a very complex, difficult at times, but lovely girl.

I can't always find forgiveness or empathy for the people who changed her course in life by harming her... but I'm glad she exists, and they made that happen. I just wish, for her, that they'd cared enough not to damage and neglect her. I might not have her, but she'd be the wonderful whole person that I occasionally get glimpses of.

I don't post in adoptions very often ( I'm not always strong enough...I stick to the lighthearted stuff), but I do read everything you all post. You're all fab and I take much comfort from your posts.

moomoomie, you already knew and loved your girls... lots of love to you all and I hope you all get the support you deserve. x

AuscreemaAscare Tue 30-Oct-12 22:08:23

Can I please ask why a geneticist in particular would be needed to diagnose a syndrome directly cause by environmental factors ie BM's alcohol intake? Or was the doctor's role to rule out hereditary genetic conditions?

Both my DC have disorders; ASD and a blood-clotting deficiency so I'm interested in things like that and certainly when DS was in the process of diagnosis blood tests were taken for Fragile X, Angelman Syndrome and a few other things, but the dx was made by a paed specialising in neuro-diversity.

I love the last line of shocker's post and echo that sentiment. Good luck smile

Kewcumber Tue 30-Oct-12 23:58:54

NanaNina - I didn;t bring up that thread because I hold any ill will at all - I don;t generally have the attention span to hold a grudge! It was just an illustration of how we do sometimes use the adoption board as a place to voice things that we may not feel able to voice in real life and that Moomoomie shouldn't feel bad about using it for that.

Of it is always a shock when we realise that in fact it is an open forum and who knows who's reading it.

On the whole I think we are very accepting of birth paretns who make difficult or poor decisions which may be influenced by the life they in turn have had or the support they lack. My experience is on the whole that adoptive paretns are actually more understanding of this than the general public who tend to be of the "they should all be sterilised at birth" brigade.

Its just that sometimes its a struggle to connect with that empathy in us.

NanaNina Wed 31-Oct-12 00:28:20

Thanks Kewcumber and I didn't actually feel that you were holding a grudge against me, but just thought I would use the opportunity to apologise for causing anyone offence.

shockers I think I owe you an apology too, as I massively over reacted to your "pond life" post. I think I probably tried too hard to defend my position, and I think I've explained the reason (as best as I am able) in the post to kewcumber upthread.

shockers Wed 31-Oct-12 08:31:45

NanaNina, no need to apologise, you already did.

It's good to get a reaction sometimes... it lets me know that my deepest darkest thoughts are't always best aired in public.

Moomoomie Wed 31-Oct-12 10:33:02

Oops. Sorry didn't mean to stir up past threads!
nananina as adoptive parents we need somewhere we can moan and rant and we use this forum, as it is anonymous I know I can speak my mind. I normally have a lot of empathy for my children's birth mother, nd as I said up thread " there but the grace og God"
What I find very difficult at times to comphrend though, is that she was given an awful lot of help and support to come off the drugs and alcohol and she chose not to take it. So, yes, she did put her addiction before her unborn babies.
As she was with a new partner when dd3 was born, she was given the opportunity to change her life around and become the parent. She chose not to take it.
Unfortunately the drugs and alcohol took her life too at a very early age.

NanaNina Wed 31-Oct-12 12:55:54

Yes I know what you mean Moomoomie have seen this many times. I think that the the outcome for drink and drug abuse are very poor for many people and it's difficult for people like us to understand. My only thought on this is that I believe drink and alcohol abuse are "self medication" for some buried trauma in their past (don't think this is a conscious thing at all) and maybe the only way they can bet by is by blotting it all out with drink and drugs.

Am worried about saying too much as posters might think I am defending bms (but I don't think you will think this shockers) as in a way I suppose I am. For me it is all about the cycle of deprivation and I worked in the same LA for many years and so saw up to 3 generations of people existing on the margins of society, with a myriad of social problems, drink, drugs, mental health problems, finance, domestic violence, sub standard housing (grotty flats) where the shops were all boarded up. Their children going into care was just something that happened and was nothing strange to them. Of course most of the kids had babies at 16 and so the cycle started all over again.

No govt (or anyone else for that matter) has any idea of how to break into this cycle. At the moment the govt is waging war on the poor in the most horrendous way. Sorry I will be off on a rant if I don't stop............

SO hope I haven't offended any adoptive parents this time, just trying to shed a bit of light on the bps, but don't expect adoptive parents caring for emotionally, physically, neglected children to feel any empathy towards the bps.
A very wise woman who I worked with used to say of adoptors and foster carers "we recruit these people who love children and want to keep them safe and give them a better life" and then on top of that we expect them to feel empathy for the birthparents who caused all the difficulties for the child, and which they cope with through the child's life"

I should have taken more notice!

Moomoomie Wed 31-Oct-12 19:30:47

I do have empathy for BM though. Without her I would not have my wonderful girls, so for that I am thankful.
I think with our BM it was not a case of a cycle of deprivation. She was brought up in a very ordinary household and had an ordinary childhood. I can't say what started her on the road she chose, but she did choose the road she followed. She had many chances and an awful lot of help to beat her addiction for the sake of her children.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now