Any advice on FAS/FAE

[littlemiss06]

Hi all im mum to four the youngest is 5 years old and lives with us on a special guardianship order, shes been with us since she was 7 months old, she was in care from 10 days old until she came to us.

After having three birth children I was experienced in their care, my little girl was in a great routine thanks to her foster carer and settled well, she was very pleasant and we all bonded quickly however she was very demanding and whingy, she got more frustrated as she got older and was a little delayed in sitting up and crawling, she sat up at 10 months and crawled at 12 but then was fine with walking at 14 months. She has always been a baby who would go to anyone, no clingy ways or anything like that, if anything she loved to get attention from strangers or other people. As she got older this did get to be a pain and she then would use people to get treats especially while out at our daughters dance class, it was like she was obsessed with food and using it as an emotion or something but when she did arrive she couldnt handle lumpy food and never took food to her mouth if we offered her rusk or anything like that

As she got older she developed little issues with clothes, bumps in her socks etc we did speak with the health visitor about it but nothing more happened there. Shes always been demanding, theres no waiting patiently for things it has to be done there and then and if I say wait a minute she will either mither and mither or go to someone else in the house.

Shes 5 now 6 in april and it feels like she getting harder and more demanding, she is so loud and hyper all the time, theres no sitting down nicely, she stands and talks to herself like shes talking to a room full of people, the issues with clothes have got worse, today shes gone in to school so upset because her clothes didnt feel right as theyve dressed up today as a fun day for christmas. She doesnt listen, you can say something to her or ask her not to do something and she just goes ahead and does it and when I ask why she says she doesnt know why she did it.

We recently had her parents evening, shes in year one and her teacher actually took me by surprise when he described her, i assumed she was fine in school so thought maybe it was us but he said she doesnt listen, cant concentrate, fidgets, messes about when shes on the carpet, they cant get her to write, she never gets her spellings and struggles working with numbers above 5. Her reading is still on the first stage of books and he said you can say something to her one day and the next shes totally forgot. Her levels on sats are at W so below level one which is behind for her age.

The headteacher has observed her in class and said there is definately something with her but he cant put his finger on what it is.

Shes still no stranger fear and if one of you was to knock on my door tonight and ask if she wanted to go to the park she would happily go with you.

Shes a petite little girl, small in comparison to the majority of her class, shes only about 2 and half stone so tiny to say shes coming up for 6, she is a poor eater although obsessed with food its like she panics if shes not got what someone else has.

As her mum drank in pregnancy with her we have been researching FAS or rather the effects as she doesnt show obvious features of fas, other than a thin top lip or at least I dont think she does, so any advice or thoughts on how she is would be great

[hester]

littlemiss, I read your post with a clenched stomach, as I have an adopted two year old dd who was exposed to heavy drinking in utero. It's very, very scary stuff, isn't it?

I don't have any useful advice, and probably nothing to say beyond what you have researched already. But my understanding is that FAS does not always show in facial features, and the behaviours you describe would have me concerned about both FAS and attachment issues. There are some very knowledgeable MNetters who I am sure will be along soon, but I would also try posting on adoptionuk.org, where there is lots of expertise about this.

I would definitely be seeking external help at this stage. Best of luck to you and your dd. I will watch this thread with interest.

[Lilka]

Hi littlemiss

FAS and FAE are very very similar. Basically, it's all a spectrum, and the only difference is, FAS generally means that facial symptoms are present. If there is no facial differences, you'd most likely get an FAE diagnosis, not FAS. A child with FAE could well have much worse behavior than a child with FAS. It's completely different in each child, and depends on the exact few days when the alcohol was drunk - a few days older or younger will change how the alcohol works in the foetus, or where it effects the most. To have FAS, alcohol must have been drunk in the days where facial features were developing the most

There is a great guide to parenting children with FAS/FAE/ARND on the FAS-aware website. It has parents tips, and deals with things like routine, friendships etc. If you want to take a peek it's here (I found it very useful)
www.fasaware.co.uk/images/stories/documentation/5_Lets%20talk%20about%20FASD.pdf

DD2 possibly/probably has FAE. Problem is she has too many other conditions with overlapping symptoms, so it's not possible to make any accurate diagnosis. But I believe she has it. She doesn't really have any facial symptoms.

If you have documentation of alcohol consumption in pregnancy, it could be well worth seeking a diagnosis

Sorry this was quick, I'll be back later when I've got the kids back to bed

[auntevil]

littlemiss - on the practical side - how to go about securing the help from school, services etc, you could also try posting on the SN pages.

[littlemiss06]

Thanks all :) I spoken to the headteacher and he said she is on a list about seeing the SENCO in school and apparently there is a meeting on monday with someone who comes in to school so she will be mentioned at this meeting too. He said she has the class teaching assistant on her table most of the time she has support but they arent sure how long it will take but they will get round to her eventually, i have in the meantime rang the school nurse who feels it does sound like fas or fae and she is going to get in contact with school for a report how she is there and then possibly either come to us to do an assessment to decide whether she needs referring but she feels she may need a paed assessment and camhs. I look at her and to me shes just my baby girl just a little hyper or a lot hyper lol but perhaps thats just her either way once weve got her seen we can go from there and either accept shes just a little more lively than most or work to support her in school and so on. Shes a great kid, amazing character. She still has occassional contact with her birth mum and she absolutely loves her to bits, its not a perfect relationship but they love each other and ill do my best to help them although she is legally with us until 18 (or whenever) but its still nice to see her little face when she sees her mum. I initially thought adhd with her as she meets every single criteria lol she doesnt so much have rages but she cries at everything and gets angry and upset over the slightest thing.

[smiledotcom]

She sounds just like my son! and no FAS there! She's very young still, still developing. Quite normal. If she really did have FAS it would have been apparent very early on. FAS is a very serious congenital effect . You say yourself "she's a great kid".

When she meets her birth mum how does she address her?
Is it different to how she addresses you?

[gaunyerseljeannie]

make sure they include looking at attachment issues in their assessment. Can cause similar problems. SW should have detailed records about her early care.

[Kewcumber]

"If she really did have FAS it would have been apparent very early on" - well possibly if she had obviously recognisable facial characteristics it might have been apparent early on but there isn't now thought to be any correlation between the degree of FAE and the facial characteristics (which as Lilka says is more linked to the precise timing of the facial characteristics developing vs alcohol consumption).

It also is unknown why some people drink very heavily and have children unaffected by FAE and others drink more moderately but the child still has FAE.

Anyway she obviously has some issues - hopefully you can get a referral and decide form that how to best support her.

[Kewcumber]

sensory issues (sorry the proper terms excapes me!) are also way more common in adopted childrne so that needs to be considered too - hopefully if you get a paed referral to someone with adoption experience they will take all her behaviours into account.

[littlemiss06]

We have had issues with her since she came to us from early on, she is a great kid because shes mine all my kids are great but shes very very hardwork, demanding and lots of issues every single day, this morning we have had a list of issues before we even left the front door to take my daughter dancing. Her nursery teacher noticed issues with her, with changes and so on they had to really explain clearly to her and now since starting school shes had problems in school with learning and concentration.

She addresses her mum by name in front of me but as mum when shes alone with her, she understands that we are both her mummy and that she came from her birth mums tummy

[Lilka]

Kew is right on the sensory front, any serious drug exposure could result in sensory issues, and those can cause many behavioral problems on their own because the child has trouble coping when they can't process what's going on around them

I know what you mean when you talk about lists before you get out the door!! The same sorts of behavior other children might have, but much more frequent and intense, and for a different reason

Trust your mum instinct. She's been with you for a long time, and if your gut says 'something's not right here' you are most likely correct

FAS might be apparent early on, because it involves physical as well as behavioral challenges (facial symptoms, body out of proportion and heart defects etc). FAE..not likely. And FAE could be, in behavioral terms, even worse than FAS

[Moomoomie]

We are in a similar position with our 4 year old dd.
She is showing all the FASD traits, but we are finding it very difficult to get a diagnosis.
Her 11 year old sister is similar and has a ADHD diagnosis and i know our paed is going down a similar route with 4 year old. I understand the " symptons " are similar.
4 year old is on an IEP at school and is due to have 1 to 1 TA support for afternoons at school. She struggles more in the afternoons as itis free play session.
I think you will need to push to get her help.

[NanaNina]

Many years ago I placed a baby for adoption when I was a social worker, at aged 7 months. Her mother was a very heavy drinker, but I certainly had never heard about FAS. The baby was small for dates (but her mother was very small) and I did notice she looked a bit odd, with a very thin top lip, which gave the mouth a "fishy" look. Anyway fast forward the tape 15 years and I met the adoptor (who lived in the county I worked in) at a Thank you day for Adoptors put on by the Director of Social Services, and we got talking.

It would take me far too long to tell you here what the adoptor said, but suffice to say that she and her husband had had a very trying time with x all the way through her growing up years, including the sorts of problems at school that the OP mentions. The adoptor had found out about FAS and had researched it on the internet, and was convinced that this was the problem with x - I still knew nothing about FAS, but felt so much for the adoptors and the child that this had turned out so difficult; the one good thing was they loved their daughter very much.

A few years later I was working independently and was assessing an aunt and uncle to care for the aunt's niece, as baby had been removed from mother. As part of my assessment I visited the foster carers who had the baby placed with them, who was about 8 months at the time. From the moment the FC carried her into the room, I was struck by how much she looked like the child I placed all those years ago. Very small, mis-shapen head and thin top lip. The child's mother was a big drinker and had 3 other children removed from her in the past. I found out that she had smuggled vodka into the hospital with her when this child was born.

I was so struck that I mentioned it to the FCs who were very experienced and they looked at each other and said "that's what we've been thinking because she looks so much like x who also had a mother who was a heavy drinker."

The baby had had medicals of course and no concerns were raised. I contacted the HV who was dismissive and didn't seem to be aware that alcohol unlike drugs, can actually pass through the placenta and damage cells in the foetus.

I was by this time googling FAS and learned that 80% of cases of FAS in the UK went undetected, and that the Americans were far more aware of FAS than we were in the UK. Had it not been that this baby was so like the other one in appearance and was so tiny for her age, and the fact that I had met up with the adoptors 15 years later and they told me all the things that had happened, I would not have had any concerns.

I did do a half day training course for other independent workers from the same agency, explaining the issues around FAS. and these were very experienced social workers and none had heard about it before.

I discussed my concerns with the social worker, who again said "oh she's had all the medicals and something would have been picked up." I discussed the matter with the child's guardian and she took me seriously and happened to know a specialist in FAS living in Scotland, and made arrangements for him to travel down to assess this child. He explained that FAS was asyndrome and a child could be anywhere on the continuum between perfectly normal and highly affected. Many of these children still go undiagnosed as they grow, and their behaviour is seen as difficult, especially in the school setting, and cannot be explained, as the behaviours don't tally with LDs, autism, aspergers etc. and that children are often blamed as it is seen that they are just being awkward and difficult. He was certain that this baby was a FAS baby, but was unable to say how she would develop as problems would not necessarily show themselves at such a young age.

Well the relatives decided (quite rightly in my view) that they could not take the risk, as they already had 3 children of their own. That was the end of my assessment so I don't know what happened to that baby.

Sorry I am rambling on here - for more information google as always will provide all the informationthat is needed. There are specialists who can diagnose FAS but I think you would have to press the NHS for a referral.

The chilling thing about all this is that the child I had placed with the adoptors many years ago, was stalking a middle aged man (when she was 15) and luckily he was sensible enough to be concerned and found out where she lived and talked to the parents. I shudder to think what could have happened had he been a bloke interested in young girls. The adoptors said they had found out that this was a trait of FAS. I'm not sure how they found out, but they were adamant about it and were very sensible people. I know this sounds bizarre but I think the very thing about FAS is bizarre behaviour. There is a book called "FAS - the hangover without a Cure" and many more I think on Amazon probably.

[goshua]

Just been reading all mail's
We have 2 Children with full FAS , They are now young Adults 22 and 24
As in mails both have Multiple over riding problems ALL FAS/D. Children are
different. Important early interventions are very important as the widow of greatest opertunity is 0 too 7 years.
School and Parents are best working together. Noted in one mail Sensory
issues these are evidant too the extream in FAS/D some schools use sensory diets in conjunction with OT's .
There are Many Overlaping condition's for FAS/D Children so it is best looking
at tried and tested Educational options sadly not alot in the UK , we found this the best it worked for our children //www.popfas.ca .
//www.fasaware.co.uk is usfull and offers Accredited Education precurment too
NHS .
My kids have made it through it's not been easy , They are both in
full time employment and very brave. With good support and liasions with
school's and college's its not all doom and gloom. Both were Adopted and
had History.

[goshua]

Sorry Canadian Ministry of Education British Columbia FASD Site is //www.popfasd.ca or //www.fasdoutreach.bc.ca. hope this works
can also google.
FASD IS AN UMBERELLA TERM FOR MULTIPLE CONDITIONS no two children are the same a list of underlying conditions can be found on FAS Awareuk
webbsite under documents.
Alot of research is being done, its becoming evident that it could not all be down too drinking rather than Genetic disfunctional problems both male and female. This could explain alot on why Alcohol effects some and not others.
Lots of research too be done.

[gettinghappy]

The FASD website also had a daily living guide.....I was a bit dubious but it is really good and has lots of advice. xx