FAS/FASD question

[silverlinings79]

In the middle of matching. We are considering adopting 2 siblings. 1 has FAS. We are doing a lot of reading, which by the way all seems so negative in comparison to other conditions we have read about, to see if we are able to provide the level of support needed. We think we are. However the younger sibling of the two (18 months) shows some of the facial features, but SW is insistent that meeting all milestones and bright so definitely does not have it. We feel that if both have it we don't know if that is something we can cope with to a degree to do both children justice. Just wandering if anyone adopted a child whom met all milestones etc but developed FAS or FASD symptoms later on. We want to make sure this is best match for them as they are amazing children and deserve the best parents for them. P.s. Finding Matching process is even harder than expected!

The matching process is (hopefully) just around the corner for us and I'm scared already!

We have done some reading on FAS/FASD too but have found it difficult. The 'established' literature seems very pessimistic, whereas real-life experiences shared on forums seem more 'possible'. And then again not. It is really hard to get a bearing, I find.

I may well be wrong but one thing I seem to remember from our reading, is that it is not possible to exclude FAS by a child meeting their milestones as an infant/toddler. You may be able to determine FAS positively, but not exclude it.
I also think I read that a child who has facial characteristics of FAS definitely has some brain damage. Whereas a child who has some brain damage may or may not have the facial characteristics.
Though the degrees of how different the brain is to an NT brain, and how complex the resulting difficulties will be, can of course vary widely.

I think it is great that you are thinking about this and not rejecting these kids out of hand, but I do think you need to be careful in how much you go on the SW's words. It's not her who will be living with these children for the rest of your lives; and neither is she a medical expert.

Have you been able to talk to the children's paediatrician?

Whilst full blown FAS would most of the time mean slower development, the thing to remember is that foetal alcohol exposure can result in a wide range of difficulties or signs. There is more than one diagnosis on the spectrum, and just because a child doesn't have FAS (with facial features) doesn't mean that their brain hasn't been affected by alcohol. They may well still have FASD.

So yes, a child may develop well as a baby, and may still have FASD. Difficulties with social skills, academics/memory (to be honest, just because an 18 month old is 'bright' does not mean they actually do have a higher than average IQ, they are still too young to tell), some behavioural issues or many of the issues children with FASD might have, won't develop until they are older ....this baby is far too young for anyone to know yet whether they have FASD or not

That does mean there would be uncertainty. The SW is not right to say the baby must be fine because the baby isn't delayed. Not all children with FASD were delayed as babies, because there is no universal sign of brain damage caused by alcohol that all affected babies/children have.

My DD2 was exposed to a lot of alcohol in the womb. I don't know for sure how far it has affected her (although I suspect quite a lot, not all of her difficulties can be explained by trauma and mental/emotional health issues). The thing is, her difficulties are not things you would see in an 18 month old. She is not at all academic, and has a mild learning disability, but not a moderate-severe one, so that wouldn't cause serious developmental delay. Issues with understanding cause-effect, problem solving, social skills...again, those are things you won't start to see at a year old.

I do agree that FASD can be made to seem all negative, which is a real shame. If you think you can provide the support the children will need, that's fantastic. You don't know what your childrens limits will be, and FAS or FASD is not some absolute barrier to having a good life. Some children do very well indeed, it's a completely individual thing.

Thank you 68x32x34 and Lilka, both really helpful posts. I agree on it being really hard to get a bearing, I feel like I'm reading and reading but still feel not well enough informed because published literature is so different to forums etc. like you say. Though I expect due to where children are on the spectrum that varies greatly anyway. I would like to speak to an actual doctor about it I have to say and will probably ask if this is possible because I think you're right about SW not being able to say that Lilka. Everyone seems very concerned with being able to cope now and I'm looking at what we are going to need to provide long term. The idea of the adoption breaking down because we weren't realistic enough would absolutely destroy me and that is nothing to what that would do to the children involved. Saying no is definitely harder than saying yes in this process that's for sure. Matching definitely hardest most emotional part so far :(

My Two FAS children we adopted at birth both are now fine, though had
problems on the way. ALL are different, Educational research has been completed, we found Education and FAS/D parenting and support go hand in hand, Negatives can be overcome HENCE WHY OUR KIDS are now fine, they like too achieve but it takes them longer than other children they are about 4 years behind., understanding how they preserve everything is important, would we adopt FAS children again , yes but a bit too old. research and information sheets see at [email protected] , wish we had a crystal ball but as in all children being able too foresee problems is impossible, have too go with our hearts sometimes, difficult.

Sorry FASD Briefing pack at www.complex.ssat.org.uk click project resource then CLLD briefing packs

A friend adopted two siblings with diagnosed FAS and both are getting on fine.

I have adopted two siblings, one has facial features but an early MRI scan was clear but now at the age of six there are issues and she is undergoing a thorough assessment.

Do not listen to SWs that try to give you (or rule out) a medical diagnosis. They are not qualified, it's a complicated issue and ultimately SWs can tend to play down children's issues to make them more attractive to prospective adopters.

So So SORRY did it again pressed wrong link rushing out too do the school run FASD Briefing links pack. www.complexld.ssat.org.uk click project resources then CLLD briefing packs

My DD is 8 and has only just been diagnosed with FASD
She met all early developmental milestones and walked and talked early. She was a good size too
She is academically fine, all her problems are with challenging behaviour and socially
She also has attachment disorder. Although she was in care from birth she had several moves in the care system and neglectful foster care. IMO it is the combination of the two that has made her so extreme
How much of the early history do you know. On paper DD did not appear to have moved so much, it was only later I found out- the moves were for FC holidays and illness
I know a child who has FASD and is with parents. It is interesting to compare them, he is developmentally delayed but no where near as challenging as DD

I would like to see potential adopters ask more questions regarding respite and holiday care, in our experience DD had far too many moves but this was not apparent without closer questioning

FAS is like any spectrum disorder is for Life Early interventions at age
of 0 too 7 is the learning widow of opportunity for most , unlike most spectrums cause can be linked interventions can and do work and many
fas and fasd children's secondary conditions can be less severe because of research and under standing. Canada is the main lead in this area see
see link www.fasdotreach.ca

I have also done a lot of research, my youngest (in my care by sgo at the moment) was exposed to large amounts of alcohol in utero as well as having to go through drug withdrawal in the nicu at birth.
I did a lot of reading and talking on these boards prior to making the decision to adopt her (I have custody of her elder sister and two birth children and have and care of her since she was born)

Peoples experiences I have found tend to be more positive than the literature may suggest.
The one thing everyone seems to agree on though is that nothing is certain, for example baby girl at the moment is developmentally on target (she's 6 months) the drs declare her securely attached to me, and the tremors etc have stopped but there is no telling what the future may hold. No dr will offer any kind of prediction, they simply cannot know. A lot of parents I have spoken to, talk of issues and difficulties that simply cannot present in a very young child, most seem to become apparent at around 3-5 years.

Do not take what the social workers tell you as 'truth' though, they are not qualified to make diagnoses or predict the future. They want to make a match seem as attractive as possible. That's not to say they are wrong simply, that they cannot assure you of something they are simply not qualified to say. It's such a complicated condition with so many potential issues.
It great that you are considering this by the way and even better that you're researching, in my experience the more information you're armed with and questions you can ask the better things are for everyone concerned.

Agree with Mama our children were the same, future and secondary problems unknown, no sw. dr . even CHAMS had any knowledge of FAS or FASD, Had too do all, ourselves, though schools were great, both children now are adults and are fine, still have FAS though.
DD has even given FAS presentation's with other's too large audiences of professionals at Hospital's about the positive's of interventions. she looked quite funny being very small the lectern was bigger then her , very brave of her wrote everything her self.

Think things are more understood now but written words and Text are very negative, sure there are many problems but not half as bad for us as they predicted they could be.

Thank you everyone. Very informative. You have given me the faith I need to ask the difficult questions until I'm satisfied with the answer. Though I appreciate that answer may most likely be 'at this stage we just don't know'.

P.s. Fasparent....very brave of your DD!! I know a lot of people who wouldn't do a presentation infront of 2-4 people, let alone talking about a personal issue to them. You must be very proud!

Yes we are proud of her, think at these presentations she portrayed FAS far better than all the professionals speaking put together as did the other young adults. Don't think she would do it again FAS for her is in the past, too busy enjoying life now.

My youngest is FAE. She developed epilepsy, has speech and hearing problems and growth problems. In other ways her development is on track and socially/cognitively she seems fine. She was slow to all milestones - walking, sitting, rolling, talking. However nursery seem to think she is now bang on average in all areas. I feel she probably has memory issues although these could also be a reflection of the epilepsy medications side effects. I also do think there will be mild or more severe learning difficulties as I do feel there are issues with her learning (colours, counting etc).

I wouldn't change DD2 for the world. I was concerned to adopt her given what I knew of BM background but video of DD reassured me. We may have more issues to deal with later on - who can tell - though my gut feeling is her phyical problems are the majority of the issues we will see due to the alcohol exposure.

Paperwork can be very scary. I swore i would never knowingly adopt an alcohol exposed child - FAS scared me to death! But the reality is a lovely, lovely little girl who has some challenges which we can do a lot to ease with interventions and support.

Most have short term memory but excellent long term, have too break all learning down too bite size, Has its fun side remember DD doing atomy and physiology at college (not easy for FAS child with medical terms and names of all muscles) We did it bite size all walking around the house with name label's stuck too our muscles , on the way too exams said she remembered it all now , long term memory kicking in took her months of repetition too learn everything. she still has permanent tremor's, which can get worse if she gets stressed but is in control. dose not effect her driving etc. but did effect all her academic exams, passed all eventually. College let her take them piecemeal were
very supportive and understanding.

Have 3 month LO at the moment came with everything , has had a bad 1st two months, but is now a lovable bubbly happy baby meeting all milestones same as our other LO just been placed, is very happy and settled. Just hope what ever the future is for LO that history is of little significance and will not stigmatise the future.
Was quite different for our Adopted dd as we knew she had FULL FAS at the high end from the beginning.