Archived Forums

http://www.appg-fasd.org.uk/reports/4589489444

Haven't read it all but P12 makes for pretty scary reading. 75% !!!!!

this quote from page 13 would make an interesting debate (although you really need to read the context of the remark, to be fair, but it's still quite incendiary): "In essence, adoption in the UK could be said to have become predominantly a family finding service for children with FASD." Discuss!

When we adopted - all three times really - the focus was predominantly on the effects of drug abuse in pregnancy. Alcohol abuse really didn't - to me anyway - seem to be considered to be as serious. Possibly not so much was known back then. I do also think though that there's not as much transparency as there should be. We still see posts here talking about bms drug abuse while pregnant with no mention of alcohol as an issue. It's highly likely imo that if bm was abusing one substance then she's quite likely to be drinking as well. And sws etc know families well enough in the main to have their suspicions even if it's not admitted. Adopters need to know. Sws need to be upfront. I suspect at least one of mine is affected and ultimately knowledge is power when it comes to advocating for our children. Modern day adoption is not for the faint hearted that's for sure,

Have posted this more than once but when we met Medical Advisor before we were committed to the match, I asked specifically about FASD. She said that low birth weight was likely to be as a result of BM smoking. I realise now that there was no way she was going to speculate about FASD. Even now the diagnosis is of 'partial FAS' which confuses people no end. I have also found on 2 occasions that the partial FAS diagnosis has worked against our son. A local dyslexia service said he couldn't join a tuition group because they only help with dyslexia (fair enough!) not with FAS. I think it scared them a bit not knowing what his behaviour would be, whereas I am sure he would have been fine or at least could have tried it, albeit with children much younger than himself. Then the CCG said he had already received several assessments and they didn't see how any further assessments would meet his needs(!) and 'there is no definitive test for FAS' I don't know what that was supposed to mean. He may not have it, or were they thinking we wanted a multi disciplinary assessment to 'upgrade' from partial to full FAS????? So far a diagnosis has not come with any support, but I still think it is important to have the lengthy report from Dr Mukherjee with recommendations for the future.

Larsti, I think these are examples of exactly the kind of muddled thinking, ignorance and misinformation which the report says is rife within the NHS and other services. And the fact that the diagnosis does not come with support is another thing the report says needs to be challenged. It's a subject close to my heart as we are pursuing a diagnosis of FASD (specifically ARND) for our daughter, without much success at the moment, for all the reasons the report outlines... I was simultaneously depressed and encouraged when I read through the report this morning. So much reflected our own experience, so much that needs to change (depressing) but also encouraging that at last the powers-that-be are talking about it at least! Here's another gem which rang bells for me : "It should not be the responsibility of parents and carers to fight for support services for their children – whether they are clinical, educational or judicial – when their entire lives already revolve around providing a stable environment in which these young people can flourish" (p18)

Sorry I was in a hurry earlier chocoholic. Meant to say thank you for posting this :-) I hope and believe that in the future things will be better for us and our children (ok they may not be children any more but may need support!!) In 1997 we had just got our first computer and I spent a lot of time on it searching the Internet for what could possibly be 'wrong' with our son, 7 at the time (birth son). I happened upon a little known syndrome 'Asperger Syndrome' and it was a 'eureka' moment. As it happened he never got an actual diagnosis but mild traits were confirmed. Believe me his behaviour was not mild!! Anyway, my point is, not many people had heard of Asperger Syndrome in 1997. Who hasn't heard of it now?? Except that its not a diagnostic term now (I believe). So maybe in 20 odd years time, FASD will be more widely known about, and more to the point, support provided for those affected. Of course there is potential stigma for mothers attached to FASD which is something that must be overcome. And IMHO it is just wickedness for any official body to fail to give the unequivocal message that alcohol in pregnancy is risky. As Dr M says 'No alcohol, no risk'.

Medical adviser confirmed with no hesitation that, as we all know, if drugs were an issue, it was more than likely that so was alcohol and again as I'd expect to hear: that alcohol affects more than drugs.

Our kids were matched to us with Social Work assuring us it was a case of "Good old fashioned neglect" and they'd be fine. Many social workers really don't know what they're talking about, I think. I'm pretty convinced my daughter's multiple additional support needs at school, her small size, small head, her malformed ears, her slow processing and lack of organisational skills are much much more than the attachment related (although I suspect we are also looking at Developmental Trauma resulting from her extremely profound neglect). But she still presents as a pretty ordinary girl - there's just so much she can't do. Birth mum was off the SW radar when she got pregnant with our oldest as she left the county for a while so there is no record of what she was up to, but records since suggest she wasn't living a very abstemious life. My son was luckier, but who knows? I can't wait until this becomes more accepted as a real life medical condition and support becomes automatic. I'm really hoping we're on the way - or am I being too optimistic? However, I'm not looking forward to having to explain it all to my daughter. Her additional support needs at school make her feel bad enough.

The report is scary reading! There have been a few posts recently from prospective adopters on the website. Feel people need to go into adoption with their eyes wide open. I attended a FASD training day last year and this was an eye opener. The more training right across the board the better. Like a few other posts we have had to push for a specialist assessment, our GP was not clued in. Going to copy the report for all professionals concerned and send to LA and the SEN Dept. We have started explaining the diagnosis to our children and it does help slightly to understand the differences. Its cruical for our children that we get the appropriate physical diagnosis rather than a mental health one. Keep on in there and thanks for the links.