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Adoption

Here are some suggested organisations that offer expert advice on adoption.

To ask about Fetal Alcohol Syndrome

104 replies

MrsRyanGosling15 · 07/01/2017 09:37

I know this is in the wrong place but I don't care, just hoping some wise people will see it and point me in the right direction.

I have had to take in a 12 month old baby who, it is clearly obvious has FAS. This child is so distressed and has nothing like a routine at all. She literally sleeps in 20 min blocks and must be clinging on to you. We have had her 1 week and input from Social services has been shocking really. They just say wait and see if parents get in touch buy they are still drinking heavily and have no intention of getting in touch.

This child doesn't make a sound at all, except the most ear piercing cry I have ever heard along with a really fast flapping of her arms. Even my 11yr old has asked what is wrong with her. I have no experience at all of a child like this and I'm afraid I'm going to stress her more r do her more harm than good. It's only been a week but I'm at breaking point. I have 4 other children in the house too and I have noticed they have all been acting up this week. Giving her away is not an option at all. I have to start her in a creche next week as we need to go to work.

If anyone has looked after a child like his do you have any advice? Especially on how to get her to go in her bed and sleep. Or any good online advice or resources? My 2 year old hasn't had a nap all week as I have just been sat on the sofa with the 1yr old crying and nodding off. I feel so bad I can't cope with this.

OP posts:
Allington · 07/01/2017 12:23

Oh, and the ASF (Adoption Support Fund) was so over subscribed (because so many needs NOT being met by SS) that it has now been capped. At least one family has found they reached the cap with the assessments, which identified all sorts of therapeutic input was needed, but there's no money left now to actually pay for it.

Allington · 07/01/2017 12:24

'Beyond the Adoption Order' is some mid-term research on the outcomes of adoption (about 10 years or so - enough time for the children to reach puberty which is a real crunch time). Interesting reading.

www.gov.uk/government/uploads/system/uploads/attachment_data/file/301889/Final_Report_-_3rd_April_2014v2.pdf

Hels20 · 07/01/2017 12:37

I am going to PM you but check out the book Foetal alcohol Spectrum disorders - parenting a child with an invisible disability. Written By Julia Brown. Available from Amazon

flapjackfairy · 07/01/2017 12:41

I am a foster carer who has 3 birth children all grown and a 10 yr old long term foster child with v complex needs.
I have also just adopted a 2yr old who arrived as a foster placement aged 11 months (also complex needs)
He was exactly the same and even with my experience i found it v hard. He never stopped crying for 6 months or so and slept in 15 min segments so that i was getting about 2 hrs broken sleep a night. He has epilepsy and has severe brain damage and also came from a background of neglect.
The best advice i can give is to take it 1 day at a time . See your gp incase there are underlying reasons for the difficulties (even though our lad had been in hosp for several months before coming to us we picked up several issues that had been missed such as recurrent urine inf). Ask for a referal to a paediatrician if necessary and contact ss to reguest an assessment of need and kinship fostering allowance.
Your lo is obviously going to be traumatised and may need specialist support as she grows.
Keep strong routines and consistency and lots and lots of love and bondind activities. I appreciate you are already v busy so this will not be easy.
I am delighted to tell you that 20 months down the road our lad is a different child. He sleeps through the night (yay) and people always comment on what a happy calm little one he is.
Honestly i wondered what we had done in the early days but he is so amazing and has done so well.
We officially adopted him in nov and wouldnt change him for the world but oh those early days!!
Hang in there and fight for the support you need. You sound lovely she is a lucky little girl and i wish you the v best of luck

smilingmind · 07/01/2017 12:52

I am a kinship carer (GM) of child with FAS.
FAS can present with so many problems from mild to severe it is difficult to predict an outcome in such a young child.
As others have said attachment disorder is a very real possibility and I found it very difficult to deal with. Strategies others have suggested are all good but IME it will take a very long time to make any changes.
Unfortunately SS will probably not be supportive due to financial constraints. I fought for 10 years, until I gave up, for financial and other support.
I gave up work to look after dc. He was a nightmare toddler. Almost uncontrollable at times. A very fast bolter so even at 3 I could not take him out without him being firmly strapped into a buggy.
We had a very good GP and health visitor. They arranged for speech therapy and a paediatrician's appointment. DC was diagnosed at the age of 2 with FAS and ADHD.
We could then claim DLA which helped to pay for him to go to a very supportive, family orientated nursery. I really don't think I would have survived without them.
When he started school he had an EHCP, due to his diagnosis, and 1:1 support and the school was also amazing.
DC is now 11. In high school with 1:1 support and working at average level which is more than we ever hoped. Also a very good footballer who plays for two teams.
He still shows signs of attachment disorder but is gradually becoming more independent. He has, and has always had, friends and I do hope as he gets older his 'differences' will not prevent him making them.
But I cannot say it is anything but very difficult to parent a child with FAS and DC's outcomes have been good. I thought initially it would be on a short term basis. Would I do it again if I knew what I know now ?
Probably but with a great deal of soul searching.
You have your other children to consider and a very difficult decision to make. Realistically this child is likely to need a great deal of your attention for a very long time, possibly for your whole life.
It might be worth seeing a paediatrician. While they cannot give a long term prognosis at this age, there are certain physical characteristics which may point to how severe the FAS is.
Certainly I would say that, with other children to consider, you need help and cannot do this alone.
Sorry if I seem negative but am just trying to be realistic. I love DC with all my heart but the changes he has brought to my life have been immense and often difficult to accept. Of course he will never know that.

flapjackfairy · 07/01/2017 12:55

Ps further to the above i am not suggesting that lots of love and care will cure the brain damage caused by fas merely that there is a lot you can do to help the baby to settle and bond and to reach her full potential.
Our son will always have complex needs but he is leading a happy settled life where he is out of pain and making slow steady progress.
He is loved and happy and that is the best we can achieve for him.

issynoho · 07/01/2017 13:36

Flapjack and Fairy and other foster careers and adoptive parents on his thread, I am just in awe of your compassion and tenacity and love and strength in taking on DC with such complex, life-altering needs. Not just that you have withstood the lack of sleep and challenging behaviour and lack of support from anywhere official, but that you have caused these children to really thrive, to find a peace and sense of comfort and love they perhaps otherwise would never have known.

You are very special people.

OP - whatever you decide in the longer term, I wish you every bit of strength and love. I hope these wise MNers can really help you.

flapjackfairy · 07/01/2017 16:29

Issy thank you for that. People often think you have to be special to look after these children but my reply is that we are the lucky ones.
My children give me so much back in so many ways and are a constant source of positivity.( You simply cannot be depressed around our 10 yr old. He is the happiest person you could ever meet.) My kids have endured more in their short lives than one should ever have to bear but they are indomitable and bounce back no matter what.

Without being too mushy i feel blessed to have them in our family and love our somewhat unusual life.
Anyway sorry didnt mean to highjack the thread!

Shockers · 07/01/2017 17:39

This is a great little, easy to digest book for anyone involved with a child who has gone through trauma.

To ask about Fetal Alcohol Syndrome
issynoho · 07/01/2017 17:55

Well, Flapjack, if you won't accept 'special' then you are certainly worthy of high praise and the DC are lucky to have you 😊

fasparent · 07/01/2017 21:48

Hi Fasparent here was tagged re a little advice regards interventions.
Would at this stage not tag any child with FAS.
1st see your GP ask for a referral too Genetic clinic.
2nd contact health worker seek a community paediatrician's referral.
3rd contact LA's Schools statutory disability team.
All this would apply too any child with ? brain damage or severe development delays., the sooner all is put in place the better , the window of opportunity for all such children is 0 too 7.
Actual FAS FASD early years interventions will not harm any child on the contrary could be beneficial for most SEN related conditions.
If baby has FAS it may take time too establish this.
Additional parenting skill's you would need too acquire in the meanwhile.

bostonkremekrazy · 07/01/2017 23:31

OP i have 3 under 4.....2 of those have diagnosed FAS. it is hard work!

my advice is don't focus on labelling the LO - at 12 months the FAS will be neither here nor there really - behavioural problems tend to kick in much later. you are probably seeing the trauma response from being moved to you from her parents - no matter how useless she will have trauma from being taken away from the only parents she know....she will be confused and sad, and the wailing is the only thing she knows to do.

re sleep - do you have a double buggy yet? put them both in the double buggy and walk round the block after lunch - this will allow your LO to nap, and you get free arms and a bit of head space - wear headphones even if you need.

in the cot swaddle the baby - she may find it comforting - my FAS babe came at 11 months and needed very tight swaddling for about 6 months until she felt secure with us.

see your GP re referral to a geneticist yes - they are the only ones who can diagnose FAS, but be aware the wait to see one can be up to 12 months in some areas of the UK. It will be a slow process to get a diagnosis - therefore don't focus on it for now....just get the ball rolling.

we are a year after diagnosis and actually no intervention has occurred still, apart from sitting on waiting lists for different things.....the cogs turn very slowly.

hth. - we are here to help if you need.

MrsRyanGosling15 · 08/01/2017 00:11

So sorry everyone. Have had an absolute day fron hell here. Just to mentally drained to even start with it now. Will update tomorrow after I've processed stuff. Thank you all.

OP posts:
AndNowItsSeven · 08/01/2017 00:47
Flowers
flapjackfairy · 08/01/2017 09:25

Oh yes swaddling. Massively helpful with mine. The more he could trash arms and legs about the more upset he got

fasparent · 08/01/2017 16:10

Would not recommend swaddling in older baby's. , is used primary for NEW BORN'S who are withdrawing from Drug and Alcohol effected abuse, have used it on numerous occasions for new born's who stabilize quite quickly., though with some can take a little longer.
Other than this', swaddling can contribute too Sudden infant death syndrome, there for would advise caution and seek medical conformation
prior too use of swaddling.

bostonkremekrazy · 08/01/2017 16:39

I dont want to detract from the thread...but fasparent the swaddle/sids relationship was disproved almost 10 years ago and it was found to be because parents tended to swaddle and wedge baby on one side.....
Now disproven swaddling can be a useful tool and is regularly used for fractious babies on nicu etc
Obviouly its mostly used for younger babies but often older babies with sen or developmental delay are helped by swaddling - as older ones with weighted blankets etc, same theory.
Hopefully thats helpful ☺

flapjackfairy · 08/01/2017 16:51

I never actually left my son tightly swaddled in his cot etc . I used it more as a way to calm him when awake in my arms so dont know the answer on this one

fasparent · 08/01/2017 16:55

Not distracting at all , seeking medical and professional advice, will suffice as I said'
All children are different as are their conditions, safeguarding cost
nothing.

Shockers · 08/01/2017 19:07

You can buy weighted vests too. But with a 12 month old, I still say a sling would be better. Skin to skin, so the baby can bond. Sing and talk; respond to every sound and movement... it's everything she will need to make positive pathways in her little brain.

Understandably, this is not ideal with a two year old of your own though.

The world needs trained, therapeutic foster carers for children who have been through trauma Sad.

bostonkremekrazy · 08/01/2017 19:24

yes we still use a sling at almost 2, but when you have 2 LOs its harder.....we often take turns to sling 1 and 1 in the buggy.
if your 2 yr old needs peace to nap and double buggy doesnt work you could try a sling with 11 month old then.
try to find a local sling-library to try before you buy.

not seen the vests shockers - they may work for my almost 2 yr old :)

bigbadwoluf · 08/01/2017 19:55

I've found gro bags good for restricting leg movement, and settling, but obviously they don't restrict arms.

There's a postal sling library, "It's a sling thing", so you can try a few without having to pack up the kids and actually get to a meeting, where people may ask questions, etc. Our local sling library also does postal loans.

We do need more therapeutic foster carers, but then society would have to decide to 1. pay for the training needed, and 2. pay these highly trained people adequately. I know that there are some who post here who are highly trained foster carers, who do it for love not money, but generally if if need people to be highly trained, doing a difficult job, then that needs to be well remunerated. And fostering allowances just aren't enough.

Plus, there is the huge pull of familial ties for this OP. I think the last thing she may need to hear is that a foster carer could do this better, that's like telling a mum struggling with a newborn that a trained nanny could do it better- probably true in the short term, but long term outcomes, it's better for that new mum to be given help, just as here that if OP can manage this, then it could be rewarding all round. OP, that's not to say that if you make the decision you can't manage this, then that's not the right decision, too. My impression from your post, though, is that you really want to find a way for this to work, in which case that does sound like long term a good plan, but just now sounds like hell for you. If you feel you can do this, then it'll be so much better than foster care, no matter how trained the foster carers. If you can't do it, then you can't do it, and foster care will be ok, because they will be trained, although at this young age, adoption could be a possibility, and they potentially wouldn't be more trained than you are.

This was the first hit on google for swaddling, which is interesting: pediatrics.aappublications.org/content/early/2016/05/05/peds.2015-3275 but it's a very small 'meta analysis' given only 4 studies met their inclusion criteria! Like anything, it'll be a risk assessment- what's riskier, swaddling or weighed blankets etc, or you falling asleep exhausted with her in your arms in an unsafe place/position? Or not being able to parent? Is co-sleeping an option, to get you some sleep at night? Again, it's all a risk assessment, co-sleeping has risks, but so does parental exhaustion, and the benefits to attachment.

OP, I really feel for you. I definitely think SS need to be offering much, much more support. I think health visitors sometimes have access to free nursery time for your 2 year old, if that would help give you some space with the baby? I understand you want time with the 2 year old, too, though! Time will help get everything clearer and easier. A threat of breakdown may well get SS more engaged, as they should be.

bigbadwoluf · 08/01/2017 20:04

Sorry, I missed that your 2 year old is already in a creche, ignore me about nursery. With the creche, yes, ideally she wouldn't have to go. But clearly, life isn't ideal, or she'd be with her birth parents. If you need to work, you need to work.

If you've made arrangements, then perhaps give them a go, but with an ear for a different plan if it's not working? Perhaps SS can advise on childminders, or nurseries with experience of special needs, and attachment needs? I say, optimistically, as if SS have been any use to me! But it could be worth asking.

It's not easy juggling finances and family, I think we'd all love to have more time at home, if we could afford it. Some people can, others can't, and yes, that can be less than ideal.

I'm sorry you've had an awful day.

Ginsodden · 08/01/2017 20:10

Yes you can diagnose FASD in a child of 12months, but you need to see a paediatrician. If birth mum is a chronic alcoholic she is certainly affected by FASD. However there is probably trauma there too and attachment issues. Be very wary OP. CSC are overwhelmed and will not support you if they think you are a 'professional, loving family'. You cannot parent this little girl without a high level of support. You will only get that if she is looked after and you are her foster carers. Alternatively you could get an SGO, but you will only be entitled to financial support and therapeutic support through the Adoption Support Fund if she is looked after immediately prior to the SGO. DO NOT agree to go for an SGO outside of care proceedings. That will make it a private arrangement and CSC will have no duty to support you. You sound wonderful but you are human and you neeed support. Best of luck x

fasparent · 08/01/2017 20:26

Agree with post's needs too be more professional training and understanding of FAS and Brain Injury's.
Our DS has severe brain injury and Global delays also Trauma age 2.5'
The FAS Interventions we used for our FAS Children are working great for him alongside information and resource's from the " Children's brain

injury trust" who kindly sent us 6 booklets (quite thick one's) too distribute too his support services so all are reading from same book.
Just today he stood up for the 1st time, has his 1st speech and language session next week (can not Talk).
FAS is akin too many condition's FAS is just a umbrella term for complex
needs. Never thought our DS would stand , is surprising us every day is endearing and very happy.