I think DD has Foetal Alcohol Syndrome. I know it's too late but what can I do?

[LollyWillows]

Name changed, obviously.

I drank too much when I was preganant. I cant excuse myself, I was a negligent idiot. I have regretted it every day of DDs life, including when I was carrying her. All I can say is that I was depressed, in a terribly unhappy and quite abusive relationship, didn't know whether I was doing the right thing, my family were hostile, and I was stupid. There's a history of alcoholism in my family and I did what we have always done - hit the bottle. Not in huge quantities - perhaps a couple of glasses of wine most days, sometimes more, often less. But anyway, far more than I should have done. And there it is. I was stupid, and I loathe myself for it.

DD is now 7. She was an early talker, and quite articulate by the time she was 2 or 3, but always vague, slow, lacking in concentration.

Her memory is appalling, and she seems to have major problems with learning.

Her reading is starting to come together, but she is still on books that some of her classmates were reading when the were in reception. She doesn't "get" phonics, so can't really write - she just scrawls out ramdon letters if she's not being supervised and helped one to one. She doesn't understand the concept of maths at all. Her teacher has referred her for some sort of maths assessment to try & work out what's going on.

Socially, she's popular, but lacking confidence. She ends up with much stronger characters, and the relationships become quite toxic. Stronger children seem to take advantage of her weakness. Her best friend left school at christmas, and although they still see each other once a week, she doesn't have a really close buddy at school and she seems lost.

Facially, she doesn't look like a FAS child - in fact she is beautiful, and I think that will help her when she's older, poor thing. However, she is slightly more petite (but not dramatically so)than the other girls in her class, and she's thought of as "the smallest one". She seems a bit unco-ordinated and not very strong.

She's on the SEN register at school , but nothing particualrly constructive seems to be happening. I asked her teacher the other day whether she thinks DD has an "organic" problem - she didn't want to be drawn into the conversation (understandably).

So what can I do? I feel so horribly churned up with guilt, distress at seeing my lovely girl struggling because of my stupidity, and a desperate need to try to help her. But I don't know where to start.

In fact, it's taken me two years of silently fretting to face up to posting this on here

So please, can anyone offer any advice?

(I know I deserve a roasting on here and I'm happy to take it)

I doubt it's FAS. Wait and see what the diagnosis is. And go from there. There is no point beating yourself up about it.

Ask to be reffered to a pead if you don't think the school is helping.

PLease bear in mind that it is perfectly possible that your drinking did not cause your DD's difficulties. It isn't possible to prove it did, and there is an awful lot of misogynistic scaremongering about FAS (it is not, for instance, possible to prove that the huge range of 'affects' some people claim are down to maternal drinking are actually down to it, because you'd basically have to take a bunch of PG women and make half of them drink alcohol, which would not be a permissible experiment).
She is only 7 and some 7 year olds display all these behaviours (being slower to read etc) but catch up with their contemporaries over their school lives. I do not know much about statements of SEN but I have a vague feeling that sometimes they mean 'Needs a bit more help' rather than 'child with permanent problems.' Has she had any kind of medical assessment or formal diagnosis? If not, maybe it's worth taking her to the GP - for one thing, a doctor may be able to tell you that there's nothing actually wrong with her.

You are beating yourself up when you don't know she wouldn't have been like that anyway!

Many many mums have drunk whilst pregnant in the past, and continue to do so, and their babies are fine. Many mums take drugs and still produce bright children.

It's far from ideal, but FAS is not as common as you might think.

Keep encouraging her, keep praising her. If she's poor at English - is she good at Maths? Does she have a skill to make up for it? If she picks up on your tension and stress that'll make her worried too. Just use the gently gently approach. Spend time with her, try to make reading fun, join the library and read to her every night.

No point in beating yourself up over something that may not be your fault.

Try to stop feeling so bad, and just focus on her and helping her as a way to get past this. If your assessment of how much you drank is accurate, it's no more than a lot of French pg women drink as a matter of course, and what people everywhere used to. My mum told me she drank this kind of amount when pg and I don't have FAS.

I think the things you describe about your DD could have all sorts of causes, and many of them could be within normal range - you're probably bringing them all together because you're so anxious and obsessing about this.

Have you raised your concerns with a doctor? I realise that would probably be a big step, but better to find out what's going on yourself. The school will probably end up advising you to do the same.

No roasting deserved.

I was under the impression that all FAS children have the distinctive facial features - have you done some research?

And if she is, does it matter at this stage? She has SEN, which are being dealt with, and the help will be given and she'll find her way in life. The most likely scenario is that she has SEN for one of the many, varied and often unknown reasons why children have SEN.

If you really need to know, do more research and talk to your GP. But don't use it as a stick to beat yourself with.

SGB is a very wise woman. Very unlikely that a couple of glasses of wine a day would cause FAS.

Speak to her teacher, they can be very knowledgeable about any potential SN. Or perhaps her GP. TBH a lot of 7 years old have bad concentration and find reading tricky at first but then catch up.

Get medical assessment, ideally in specialist neuro-developmental unit.

What you are describing does not sound particularly typical of FAS.

Also could educational psychologist help? Formal assessment to r/o dyspraxia/dyslexia and all the other v complex "-xias"? (I am no specialist; can you tell )

Good luck.

you sound such a loving mother and really mustn't beat yourself up.
I would ask doctor if it would help you and this may give you peace of mind but I don't have experience of FAS.
Hope you feel better soon and for what it's worth I think your daughter sounds ok

Lolly, bless you, you poor tortured soul.
FAS occurs when people are drinking litres of booze, not a few glasses of wine.

Re the reading, if you have £150 spare, I can direct you to best evidence based online reading programme that should work wonders. (I'm not on commision, it's the topic of my MSc and has worked wonders with so many kids.)

Thank you everyone.

I guess I need to bite the bullet and go to the GP. I hear all your lovely reassuring comments that it might not have been the booze, but I feel so ashamed. Don't know how I'm going to go and confess this to a doctor.

In answer to Rhubarb: She's imaginative, and can be very funny with word play, silly rhymes and so on, but her shyness and general vagueness tend to get in the way. Her drawings are lovely, but she can't concentrate for long enough to really finish anything.

As others have said, really there is no point in beating yourself up about things that are probably entirely unrelated. I know someone who regularly drank a bottle or more of wine a night while pregnant and her son was precocious, very bright and is now doing a medical degree.

Children are all individuals and basically just are who they are, regardless of our best and worst efforts! And your DD does sound lovely.

Have just read the Wiki entry on Fetal Alcohol Spectrum Disorder

She definitely has a lot of the functional impairments listed, although she doesn't have the facial features or the growth deficiencies (I think). Alcohol-related Neurodevelopmental Disorder would fit (under "other FASD diagnoses").

I read an article quite a while ago now(a medical one) where it stated that mothers of children with FAS drank more than 50units per week during their pregnancy. I think its quite unlikely that you would have done any serious damage drinking a few glasses of wine.

Lolly, a lot of that stuff in the Wiki entry is vague and not proven, and there are a number of causes of things like epilepsy, poor co-ordination and slow growth. I drank a hell of a lot in the early stages of being PG with DS (because I had no idea I was PG) and a moderate amount later on in the PG: DS is advanced for his age and very healthy.
WHile I am not a doctor, I can't see anything in the list of symptoms you describe that suggest a child with impairments: she's herself. There is a lot of over-medicalisation of childhood these days (and adulthood) with all these 'syndromes' being invented to describe behaviours etc which are just not quite as conformist as other people's.
I think there is no reason at all for you to feel as unhappy as you sound. You are obviously a very loving mum and your love and support and general care for her will help your DD acheive good things.

I wouldn't 'confess' to your GP. Don't put ideas into his or her head, just go with the list of things you are concerned about (as posted here) and see what he says.

I worked with an HV team for a while and from what I could gather FASD kids always had the distinctive facial features and the mothers were usually alcoholics.

lolly, stop and listen to what everyone is saying. FAS affects the children of alcoholics who drink vast amounts during pregnancy. And yes, as far as I am aware, it is always accompanied by the facial features.

Stop beating yourself up over something that isn't your fault anyway (sounds like you had a terrible time, hope things are a lot better now) and concentrate on getting your dd the help she needs with reading/writing/maths/social skills.

Take up Moondog's offer, she knows her stuff.

Solid, so with you on that one
'There is a lot of over-medicalisation of childhood these days (and adulthood) with all these 'syndromes' being invented to describe behaviours etc which are just not quite as conformist as other people's.'

Everyone wants a diagnosis of some sort but what does it mean or how does it help? It doesn't.
Even a syndrome simply means a collection of symptoms.

As a salt in field of SN, I generally take no notice whatsoever of a diagnosis. People are who they are.

You are all wise women who know your stuff. Thank you for being so supportive.

If I had a spare £150 I'd take moondog up on the offer, but I simply haven't at the moment, because we're embroiled in a too expensive house move, but maybe later on. It sounds good.

BTW, it seems alcohol related birth defects (like the Alcohol Related Neuro Disorder) aren't always accompanied by the facial defects, but anyway, all your advice is very reassuring. I will mull it over in the next few days.

I agree with not pathologising things if you can help it. It's not so much a need for diagnosis, I see now, as receiving the correct advice on how to approach it and support her.

Yes.

The things you mention are the typical things that are likely to be present with any developmental delay, not specific to FAS. A fair few of the things you mention would also have applied to my ds at that age- and I know I did not drink during pregnancy.

I would absolutely follow the advice on here: ask for a referral but do not put ideas into the head of your GP. The problem with a misleading diagnosis is not just that it would cause you a lot of agony, but that the doctor might miss something else that did need to be diagnosed.

Oneof the things about the foetal-alcohol 'spectrum' is that it seems to have originated in the US as part of a welfare-cutting drive with the idea being that if you could simply blame stuff on selfish-bitch women there would be no need to fund research or even extra care for children with problems.

which would line it up with certain other syndromes: like Munchausen-by-proxy which may sometimes represent genuine (criminal) behaviour, but can equally be codespeak for I-haven't-a-clue-what's-wrong-but-I-would-rather-it-was-this-woman's-fault-than-my-own-inability-to- diagnose

not disputing that FAS exists, but maybe it does get overdiagnosed