Adopted children with FAS

[Moirasue]

Hi I am new to mumsnet and am wondering if anyone else has experience of children with Foetal Alcohol Syndrome. I have looked at the categories in the special needs section and there is no reference to this condition.

Both my children have this syndrome and life is full of ups and downs on an hourly basis sometimes.

Would anyone like to share their experience?

[CinemaParadiso]

Hi there!

Sorry I have no experience of FAS, but just wondered if you were a member of Adoption UK or if you used their message boards? I am sure there'll be adopters with experience of FAS on there who would be willing to share experiences. I've been using the message boards since before we adopted our DD (now 6)and have found lots of help, support & advice there.

Here's a link:

www.adoptionuk.com/s/forum/108012/forum/

[Moirasue]

Hi and thanks for responding. I have a number of organisations which provide a lot of help and advice for me. Both DS's have varied amount of delayed development and CHAMS, Adoption UK and After adoption have been very helpful and supportive.

There is nothing like sharing experiences with other parents when it comes to practical adivice. My current issue is getting DS2 statemented so he can get the support he needs in high school. Children with FAS do not have apparent disabilities but as they progress through school the delays and their behaviour problems become more and more apparent.
Anyone out there been successful in getting children with delayed development statemented?

[Moirasue]

Hi Maryz

Thanks very much for great advice

[PheasantPlucker]

Just put this is SN too.....

FOETAL ALCOHOL SPECTRUM DISORDER

Question & Answer session with Raja Mukherjee


FRIDAY 30 APRIL 2010 @ 11am-2.30pm


An unmissable opportunity for a small group of adoptive parents and long-term foster carers to learn from a leading expert on FASD and participate in a research project.


Venue:

Adoption UK

Linden House

55 The Green

South Bar Street

Banbury

Oxfordshire

OX16 9AB


Places: Limited to 25 people, so please contact us soon. Priority will be given to Adoption UK members.

Fee: A £5.00 charge will be made to cover the costs of lunch.

[NeverendingStoryteller]

I can strongly recommend Dr Mukherjee's seminar. He is a world-class expert in FAS and is well respected at St George's where he works as an academic (in addition to his clinical work).

[JRUB]

Check out www.fasdtrust.co.uk and today's article on C4 at
www.channel4.com/news/doctors-call-for-alcohol-tests-during-pregnancy

[fasparent]

Hi Moirasue, We were fortunate ours were diagnosed early within a few months.
lots of problems hole in the heart, growth disfunction, central nervos, system disfunctions, webbed feet etc. Fortunate in that we could start early interventions from the start (both adopted) . THIS worked for us. both are working full time, been a long hard slog will always have FAS but know how too control it. Daughter has scince done some presentations at University Hospital. too promote Educational Understanding of children with FAS and FASD. All chidren are different there is little or no guide too early years for pre school and year 1 and two regards early interventions. Think this is a major problem. Wish we could have another two , too see if what we did works again. Still we are resigned now too having a rest.

[fasparent]

Hi again Moira, we owe this webb site for much of our childrens success we used it some 24 years ago its the most advanced site for FAS and FASD , made sure all their teachers and schools, colleges used it, FAS FASD has too be very much a parent and schools partnership. Its from The Ministry of Health and Education British Columbia Canada. www.fasdoutreach.ca. also
good book which gives teacher's a understanding of how too understand a FASD child (very very important) down load free at www.fasaware.co.uk , think its "Reach too teach"., in " Educational success of Children with Foetal Alcohol Spectrum Disorders

[fasparent]

SORRY Moira, forgot too say Home and early years strategies. Not much in the UK we looked at
www.FASD-Do2learn

[kindregards]

Hi I am new to Mumsnet in hope for some insight into others' experiences - as having to make difficult decision of whether to adopt an 11 month old who we now know may have a likely diagnosis of foetal alcohol syndrome (FAS). Have researched websites which are very frightening and appear so negative. Does anybody have experience of bringing up a child known to have FAS at a young age - honest experiences are what I need. Thanks.

[HappySunflower]

Hi there

My daughter has a FASD diagnosis.
So far, I've been pleasantly surprised at the progress she has made since coming home.
But, in all honesty, at 11 months, it is impossible to know what her outlook will be like, its much further down the line that things tend to become clearer.

[Moomoomie]

I have two children with FASD, as happy has said, it really is impossible to tell how severely they will be affected.

Research is difficult because they will concentrate on the negative side.

Interestingly our paed who has recently been to a seminar on FASD said that 70% of adopted children have some degree of Alcohol related problems.

If you can look beyond the possible FASD and see the baby for who it is, if it is reaching milestones so far, if you feel you can parent this child no matter what. Then go for it. If not, don't say yes.

We have been told early intervention and good role models are the key to a child with FASD. Which we are providing for our children.

[Happyasapiginshite]

Can I ask a very silly question? How do you know if your child has FASD? My dd was adopted from Russia where there is a huge alcohol problem. We don't know how her BM acted in her pregnancy but I'm guessing that she drank. How would we know the effect this would have on dd? She's 2 1/2 now and has hit all the developmental milestones so far, apart from speech. If there is to be problems down the road, I'd like to get started asap.

[Moomoomie]

It is very difficult to diagnose. We battled with all professionals for years with dd2, nothing ever dx all they said was it was my fault!
When dd3 came along we found out a lot more history from BM?
Dd3 was born withdrawing from heroin and alcohol and nicotine.
TBH we have only just been given the dx and a lot of that came down to the fact a lot of the professionals we saw had just been to the seminar.
A dx in itself means nothing, we have not been given any support at all.
To answer your question, we saw a genetics doctor who dx them after going through their history and examining them.
FASD can be confused with/ go along side other neurological conditions like ASD and ADHD.
Best thing is to keep a close eye on her and ask to see a paed if you are concerned.

[Happyasapiginshite]

Thx Moomooie. What should I be looking out for?

[Moomoomie]

Happyasapig..... Dd3 is very impulsive, she doesn't have the trigger to stop doing what she is doing.
All three of my girls have had delayed toileting, which is exhausting and I've only just been told it is a trait of FASD, after being told it was me not training them properly.
Social skills can be poor. Dd3 is very happy not having any really close friends t school.
Concentration issues.
As FASD is a spectrum disorder it is difficult to know what to put down to that and what is just their personality.
They are lovely girls, not at all malicious and are loved by all who meet them.

[Happyasapiginshite]

Thanks for sharing, Moomoomie. It's probably too early now to be looking for signs yet then. I'm going to try toilet training during the summer so good to know that there may be delays.

[kindregards]

Thanks for sharing Moomoomie and Happysunflower. I guess it is easier having the potential diagnosis to start with, rather than fighting to get professionals to understand and recognise issues.

[fasparent]

Hi again , all children with FAS FASD are different, our two were effected at the high end with multiple problems, one home schooled. They are now in their early 20's both are in full time employment and live independent, both drive and have a social life etc so all is not doom and gloom. Early intervention's
is the answer diagnosis can be long coming but early interventions for FAS FASD will not harm any child remembering FAS FASD is an umbrella term of which there are many related conditions ADHD, Asburgers, ARND, Autism, SID's , etc etc hence one reason early interventions will prevent secondary
problems. Our two still have FAS FASD but have learnd too live with and control there conditions. We are very proud of their achievment's , they just take longer too achieve so patience is needed.

[fasparent]

Hi again , all children with FAS FASD are different, our two were effected at the high end with multiple problems, one home schooled. They are now in their early 20's both are in full time employment and live independent, both drive and have a social life etc so all is not doom and gloom.
Early Interventions is the answer diagnosis can be long coming but early interventions for FAS FASD will not harm any child remembering FAS FASD is an umbrella term of which there are many related conditions ADHD, Asburgers, ARND, Autism, SID's , etc etc hence one reason early interventions will prevent secondary problem's. see my earlier post. Our two still have FAS FASD but have learnd too live with and control there conditions. We are very proud of their achievment's , they just take longer too achieve so patience is needed.

[kindregards]

Thank you fasparent - it is very encouraging to hear that your two are both living fulfilled and independent lives. You deserve to be proud of them.
You are right in that all the reading appears to be doom & gloom, however on hearing such stories as your own it is enlightening to see that this is not the case. The fact that you are willing to have more children as per your earlier post says it all.

[fasparent]

Thankyou Kindregards, We have been fostering young children and baby's for
over 37 years and still are, of the many many adoptive placements of tot's and babys over this time we have not experienced any negative's , OK we have lots of ??? Alcohol drugs related problems , but from experience we are able too start early interventions if effected or not, if there is a question . Its all about parenting strategy's not solutions too prevent secondary problems later, this we can pass on too mums and dad's if nessersary , this has not been a problem so far

[adoptmama]

Hi Kindregards my youngest DD is like FAE (fetal alcohol effects) rather than full FASD. She has severe growth restriction, epilepsy and some hearing and breathing issues. She also has severe language delay and probably a language disorder. I suspect she will be learning delayed in some areas as she is lagging in some milestones. I knew alcohol was a risk factor when I went ahead with the adoption but it wasn't until she had just turned two that most of the physical problems (epilepsy etc) started to be seen. Until then she was slow to meet milestones (walk, stand, crawl etc) but developing apparently normally. She is now 3, loves nursery, is full of life and a great favourite with the teachers due to her huge personality (making up for her tiny stature :) ) I worry about her future - of course - but am hopeful that we have already seen the worst of the impact of the alchohol on her and that we will avoid the more devastating behavioural and learning difficulties associated full blown FASD. Good luck with making your decision. I know it is hard.

[adoptmama]

Happyasapig DD is also adopted from central Europe (though not Russia). She was slow - but still in the normal age range - for toilet training. She is almost consistently dry now for naps but not yet through the night (age 3.3) but getting there. Speech has been a major problem for DD and we have just started speech therapy which is looking very positive in terms of outcome. Our endocrinologist does think alcohol is a root issue for the speech, hearing, breathing difficulties as well as the cause of the epilepsy and growth hormone deficiency. My feeling is the earlier the diagnosis/intervention the better so if you are worried about her speech I would definitely look for some help or support. Good luck and feel free to pm. me if you'd like to compare/share stories :)