fear matching FASD

[Beautifulvue]

hello all
some of you helped me in the past and it was much appreciated as we are in a part of the UK with not a lot of adopters/ resources and I don’t have anyone to talk to about this honestly who is an adopter or who understands it. i really value that i can ask anonymous strangers things in this board and be anonymous too.

we have been matched with a gorgeous 16 month old boy. We know this is a great privilege as there seem to be very, very few children up for adoption at the moment- are people finding that the case ?

We feel a connection with him. We are really in a bit of shock as we were approached about him as the chosen couple with no competition element if you know what i mean -and on top of that he is the first child we have looked at . We were expecting to wait a couple of years before getting anywhere but because of a quirk of specific ethnicity in my partner and my backgrounds, this child has somewhat magically (it feels) appeared. We also have no birth children so we are becoming parents and adopters at the same time which has its own fear dynamic.

We had through training begun to think well that an older child age 3 -4 would be better for us as we would have more idea of what we would be managing in terms of challenges. But this younger child is now ours to adopt- we haven’t met him yet but he has been with extremely good and loving foster carers since birth.

He is doing really well - no red flags at all so far - apart from his very small weight /height and very small head circumference at birth. he has grown well since then and caught up quite a bit - but his height is still v low for his age which is a particular red flag. My partner has a science background and all the myriad data we have checked says that indicators of fetal alcohol syndrome are
1. confirmed alcohol exposure ( birth mother has confirmed)
2. microcephalic head at birth (confirmed- now caught up)
3. growth deficit under 10 percentile (confirmed -weight getting a lot better- height still low)
4. the distinctive facial presentation (only present in 10% of cases)

he is too young to be assessed for neurocognitive things of course and the mother and father both have been honest and open about polydrug use and the mental health issues in family etc. We understand all these other risks and we can handle them and how they develop- but I have hit a wall of fear with possible FASD.

any advice/ perspectives very appreciated as these are the issues -

a) there has been no mention of or checks for FASD despite these facts - there has not been any measuring of facial features for example ( and this can pick up subtle but correct FAS/D markers that aren’t apparent without measuring ). The adoption medical officer has written a report that says he is doing well and no issues but in that no mention of FAS/D at all. This really disturbs me -If amateurs like myself can see this child is vulnerable and therefore needs to be monitored to insure early interventions from the medical reports why has this child not been assessed for this ? We have to meet the medical officer in the future and I will be asking this and insisting on a FAS/D assessment -has anyone done this ?

b) i read that alcohol use is in the vast majority of modern adoption profiles -except perhaps for those with learning disabilities. Is that right ? It’s so hard when you meet adoptive parents as you can’t ask but I feel like I am the only person who is struggling with this and everyone else has been able to find a child that has a lower risk profile in some way -or is such a saintly person ( i mean this sincerely) that they can take on this huge responsibility without my qualms/fear

c) The outcomes that i read for FAS/D seem so bleak and scare me as because it is a form of brain damage -it seems to be that the possible interventions can make little difference. We have been very open to lots of risk factors in our assessment but FAS/D is the one we said no to. We have very realistic dreams for a child but we want to have ‘enough’ hope (in the different way you can as an adoptive parent ) that the child can live an independent life, however modest. We have always felt FASD is the biggest worry on that score and that is due to the fact that we don’t knowingly know any kids that do have it. There may be kids/adults around that have it and are doing well and are able to grow up and live independently with/without support - but i don’t know myself of any examples.
Therefore I am having real trouble surmounting my fear and I don’t know if this is an indication that we should not proceed with this match.

d) A big part of me thinks that this is the reality of adoption and if I back out of this, what lesser risk profile exists that would get me over the line ?

I don’t need to say that I’m writing this as I am tortured -the fear of going through with it is matched by the fear of not going through with it.

thanks for reading - i know it’s a long train of thought.

[Chocapple]

Hello !

Such an insightful post. It really struck a cord with me - and I think you'll make a brilliant adopter.

Regardless of what you are/are not told during Matching adoption is a huge leap of faith. Children's challenges and medical/behavioural issues often only begin to come to light when children start school.

I don't know much about FASD but know that it's a spectrum.

Maybe this will help you.... ? I'm a solo adopter. During Matching I was very clear in what I could/could not cope with.

My son came home aged 4. He is now 7. I said I could not cope with: child to parent violence, autism, adhd and other complex needs e.g weeing/pooing everywhere. And that I needed to carry on working and use wrap around care and holiday clubs.

Well... my child has all of that and more...

But as soon as he came home he was MY child. And I have just dealt with everything as its come. I have had to give up work, hardly see my family and have had to make new friends. The old ones disappeared.

See my previous posts... full of challenges and Crisis state. Now nearly 3 years later yes life is very challenging but we plod along and are doing very very well.

Taking on a known issue is very different to it becoming apparent later on.

With FASD there is a huge huge potential for many adopted children to have it. But very few birth mums will admit to drinking alcohol. But if they did drugs then its incredibly likely they drank alcohol too.

Many adopted children may well have FASD but it's not diagnosed as it can look very like say ADHD.

Adoption UK and I am sure the NAOTP have webinars on FASD.

I know this reply doesn't say much specifically about FASD but I hope my comments are helpful.

Lastly, the Adoption Community is very active on FB. Various private groups and incredibly incredibly supportive of each other.

I wish you the very very best. From a very happy Adopter. Life is very tough but my boy is my world. Xx

[ifchocolatewerecelery]

I saw this and thought of you. Just in case the links don't work- they are information from adoption U.K. about September being FASD awareness month and events they are running because of it.

https://m.facebook.com/story.php?story_fbid=pfbid0Qjb7A5zNPpDKqMpKNktgXJ86BW1SbGxtpYQJTo3hHHYSStHZKtRo8M41JiTUgkFUl&id=100064632913911

https://lm.facebook.com/l.php?u=https%3A%2F%2Fwww.adoptionuk.org%2Fpages%2Fcategory%2Ffasd-month%3Ffbclid%3DIwAR0tVhoAmwrE8-JIJdElqhOh54wEYYbz2ya90KnicPUS6H0K0TfbZsr50IIaemASL2IHDs4yEiVQmEp7NxKS8tIYfsGbq-KiKvd7MH2Rht6eY4nec9VyEzpcuwCCv0iEQ&h=AT2m2eDwUonquOz2hVuFj1Z0T2l499_tIF5i1ySThBtZL-kGqcgI1W1o5tFWnMeyEPzw8KmfBzc2NyxvgpvjE3FzojlKorchLotECLQrh6dDBYiWIorhW9OB1xGK3rZL8JBxnywgmWMIzQo&s=1

[Jellycatspyjamas]

I can really understand your worries, it’s a hard decision to make.

FASD is a spectrum disorder with children being effected very differently. If you think about autism, it’s a huge spectrum with some people being able to live independently and do well academically and others being non-verbal, dependent on carers for basic care. FASD is similar.

My DD is undergoing assessment for FASD, while she has her struggles she is a joy to parent, she’s just started specialist provision for high school because she needs the space to develop socially and emotionally and there have been other issues that have impacted her learning but there’s every indication she’ll be able to live independently - it just may take her a bit longer to get there.

It’s difficult because your potential child is so young, my DD was 6 when placed so we had a good idea of where she was struggling.

Its definitely worth talking to the medical advisor, there may be reasons why they’ve not done initial measurements etc. in all honesty they usually won’t look for neurodevelopmental issues until children are reaching school age because that’s when developmental issues start to show themselves, and there are so many things that can contribute to delays in development with adopted children it’s common to take a watchful waiting approach because some issues do resolve themselves once a child is in a secure placement.

The reality is that things such as low height, low weight, small head size can also be attributed to poor nutrition during pregnancy, it can be common in premature babies and it can also be a sign that the baby’s brain hasn’t develop fully possibly due to alcohol use in pregnancy. You’ve said his head growth has caught up which may be why (rightly or wrongly) they’ve not assessed for FASD.

I’d also say that understanding of FASD is growing in the adoption community and in adoption medical/social work professions, but there will be some who have limited knowledge and understanding.

Things I’d be asking the social worker and/or medical advisor:-

-have they considered FASD as a possibility, if not why not
-do they have a medical explanation for his low birth height and small head
-is he meeting developmental milestones at the moment, have there been any delays
-what do they know about mums use of alcohol during pregnancy, if she used drugs she will have used alcohol but if alcohol use isn’t recorded in her/the child’s notes you’ll really struggle to get an assessment for FASD now or in future so ask that it’s recorded if known
-is there a history of neurodevelopmental issues in his birth family

An FASD diagnosis isn’t the end of the world, but if you can’t cope with the uncertainty of knowing, or think the child’s potential needs are beyond you that’s ok. There will be a child out there for you, but I know the knowledge of this child being possible right now is a big pull. It’s such a head/heart decision. As cold as it may seem though this is one where you need to use your head and let your heart follow.

[onlytherain]

I have a child in my family with everything you describe and they don't have FASD. You can have lots of indicators, but not the disorder. Even if you adopt an older child who is doing well, things might change quite drastically once they hit the teenage years. The other posters are right though: it is all very different when it is your child. You get used to a new "normal" and fight for your child. My kids are really struggling right now, but they are still wonderful people and I am the luckiest mum to call them mine.

[Beautifulvue]

Thank you all so much for taking the time and the headspace to write -its made me feel less alone
@Chocapple I see you so often helping and giving advice on the boards- you are amazing to do this as a solo adopter as all the solo adopters I meet are- and so happy for you and your son that things are good- I have been reading a lot about co-morbidity with ADHD /FAS so that is helpful to know.
@Jellycatspyjamas thanks so much for all the help you bring to these boards too- thanks so much for sharing a little about your daughter- yes you have hit the nail on the head. We have a very strong pull towards this child at the time that there are very few children available and the feeling this might be our best/only chance to be parents and lowest bearable risk- versus the feeling that having an older child would give us more apparent certainty in what the level of challenges might be.But then when we look at older children's profiles the enormity of that can be equally scary, but you may know they are doing ok in school, but that may change when they get to secondary school...etc etc ...I don't need to tell you all how the uncertainty never ends. We spent so much time in training working with the LA etc about how to work on difficulties after abuse/ neglect issues by birth family that we hadn't really considered the possibility of a child who had been in good foster care from birth (not underestimating attachment issues and the terrible wrench of leaving his busy loving foster family). The balancing up of our ability to parent a younger child who is more unknown but has had the best care possible and is thriving -versus an older child is very difficult and not what we had prepared for (impossible to really until you see a real CPR). Thanks will use those questions for the medical officer to base our list on.
@ifchocolatewerecelery - thanks so much - I see you on here too a lot and I have been so immersed in the LAC minutae that I had missed totally this on my Facebook feed - have signed up to a couple to things thanks so much
@onlytherain another very familiar name - thanks so much and as with you all , much love to you and your kids. That is what I have been thinking about - that the issues will be what they are and have to be dealt with -what creates them may or may not be known. I think the fear around FAS/D that it is brain damage that cannot be helped or supported. But because as you say it is on a spectrum and is invisible in its less extreme forms means that those (both adopted and non adopted) who are managing well/bearably with it we don't realise have it. So it is hard to get a grip on what it actually means in ordinary adopters lives- which is why I can't say thank you enough for reaching out to try and help me from your informed points of experience. many thanks

[Jellycatspyjamas]

I think the fear around FAS/D that it is brain damage that cannot be helped or supported.

I think anything involving the brain sounds very scary, but the brain is incredibly plastic in that it can adapt, heal and function in all kinds of ways. Children with different thinking styles and ways of processing can be helped and supported, with the right supports and therapies. If you have a look at Adoption U.K. you’ll see some of their work with FASD, it’s a good place to start.

The key is getting those supports and therapies on board, knowing enough to argue your child’s case and stand your ground - which is something you’ll need to be able to do as an adoptive mum regardless.

[LeoLeo2]

One of my children is quite severely affected by FASD - but even though he was older at placement it was not diagnosed at the time.

For him, it is Maths and memory that are the most significantly impacted areas. It definitely shows in his day to day life at home, but most people outside of direct family and friends probably never notice.

We have had some difficult times on our journey, but I have never felt the FASD has been the driver for that; trauma has had a far, far greater effect on his life.

Of my children, he is by far the easiest to parent and has also ultimately made the most progress and is most likely to lead an independent life.

Personally, I would say that going into placement with your eyes wide open to what you may be facing is a good position to be in. You will know what to look for and will have already researched strategies to use, assessments to push for and be able to educate your support group about why your parenting approach may differ from theirs.

If you feel a connection already then that is half the decision made. The other half rests on whether when you are brutally honest with yourself you think you can, and that you want to, cope with whatever that child may bring on their journey.

[121Sarah121]

My child ass pre school when he joined the family, we were told he was meeting all his milestones (he wasn’t) and even now at year 3, it is unclear if he has another neurodiversity other than trauma (sorry for the clumsy language). He has undergone lots of assessments and at this stage, it still isn’t clear. What we do know is there is lots of trauma and attachment issues which he is getting support with. He also has lots of learning needs and support with other aspects of his life but we are not clear on the cause. An older child doesn’t necessarily mean more information.

what I would be asking myself in that situation is “can I meet his needs? Will I be able to meet them in 2 years time? 5 years time? 10?” I know it’s hard to know because they won’t all be apparent now but are you willing to dedicate your life to being his parent, to making sure he has what he needs throughout his childhood and beyond? If you feel you can commit to him, no matter what, then go for it. If you are hesitant, then stop and think why? Is it something you can overcome with support? Or is it something you feel you can’t overcome? The thing with adoption, there is a risk but it needs to be a managed risk because the impact on an adoption breaking down for everyone is huge and life changing so if you feel you can’t manage, it’s ok to say so.

[Formby]

I am raising a now teenager since birth (family situation) who has FASD.
Life with this child has many challenges but also lots of fun times too. My child is emotionally immature for their age, so making and maintaining friendships is difficult. It’s been a battle in school to get the right support. I’ve become an expert in areas I didn’t know existed.
Day to day life is like being with a child much younger than their actual age but they want to fit in with their peers, so navigating this takes thought. A child with FASD can act as their given age one minute and change to a much younger age in the blink of an eye.
This is only a fraction of my experience but as said by other posters FASD is such a spectrum, so no two experiences are the same.
I would talk to the medical officer about the child’s pre-birth experiences and see how you feel afterwards.
Good luck with your decision.

[Lemoncellocake]

I'm not going to go over all the scientific stuff again as other adopters have done a brilliant job. But I thought I would chip in with some of the emotional things.

Our daughter was a "incredibly low risk" child for us to be matched with. I won't go into all details but she was like a "dream" baby. Now that she is 8, she has about 4 diagnosis that will severely impact her life. No signs of these when a baby. Life is hard but we adore her and she has enriched our lives to the point where we decided to adopt again.

Our son came as a "high risk" baby. Exposed to drugs and domestic violence in the womb. Tiny, small head. He is 4 now and the absolute light of our lives. I'm 100% sure he will also have diagnosis of something soon (probably adhd). But he is more advanced than his older sister. He is super intelligent for his age.

What I'm trying to say is we ADORE them both. They adore each other. Life is HARD. But you can't predict how any child will turn out. You just have to be prepared to be their advocate at school, dig deep and know you will continue to love them.

[WittyUsername123]

Both my children are at risk of/ being assessed for FASD. I would echo what the other posters are saying- it is a spectrum condition, which affects people differently. Studies by National FASD also suggest it is more prevalent in the UK than autism! Both my children are average/big sized, and have bloody massive heads. They have other challenges though. I would argue that intervention and support can help children with FASD develop in terms of their support needs.

Only you can know what is right, but a child aged 3/4 would probably not have a full compliment of diagnoses either. Regardless of the age of the child, it’s impossible to ‘know what you’re getting’.

[DorothyWhippleFan]

@Beautifulvue I’m a longtime poster but a serial name-changer. I’m 15 years in with DD1 and I guess that I’m/we’re the corollary to your current experience? DD1 (I have two adopted daughters as a single parent) came to me as a “perfect” baby (yes, those actual words were used but 15 years is virtually prehistoric in terms of adoption-related thinking?) There were NO health or medical concerns raised by the placing authority’s medical adviser at the time. Fast forward 15 years and the tiny baby is now registered blind, has an NHS diagnosis (so important to get an NHS diagnosis for credibility and to be able to legitimately access help and support, in my experience) of neonatal abstinence syndrome (like FAS but for drugs), as well as autism and ADHD. There are other diagnoses too but I won’t bore you with them here. It is also highly likely from some post-placement quality life story that my DD was also exposed to alcohol in utero - and I have been told that I could pursue a diagnosis of FAS/D - as well as extreme domestic violence. So, the whole toxic trio.

I won’t lie, we’re currently in the third of adopters experiencing extreme challenges and I’m honestly not sure that we will make it through to my DD living in our family home till she reaches adulthood. But, I continue to do my best and I try to live up to the promise that I made to her - and to myself - when I brought her home.

Depressing, huh? BUT, my DD is about to enter her GCSE year in a selective grammar school, where she will sit 10 GCSEs and is predicted grades between 7-9. Her dream is to study Anthropology at university and become a museum curator, preferably at the Pitt-Rivers Museum in Oxford! EVERYTHING is so much harder for my DD and her memory and processing and executive functioning skills are impacted massively by her prenatal exposure to drugs and alcohol - and frustratingly to me, who has to micromanage and spoon feed her constantly to help her meet the demands of life and society. My DD has never managed to travel on a public bus by herself yet.

However, this summer, she travelled to Sweden with her Girlguiding Rangers group and wild camped on a remote island, then she spent a week in Snowdonia on an Outward Bound Trust week and very nearly made it to the top of Snowdon before she had to descend due to bad weather, as well as multiple other activities.

I feel like I’m rambling now but I wanted to make the point that our children can and do succeed but maybe that success looks a little different to what we, as parents, are used to, especially if you’re professionals yourselves? Also, just to reiterate, adoption can be a triumph of hope over experience, and heart versus head, but I genuinely would not have wanted not to have DD1 in my life, despite the current heartaches.

[Beautifulvue]

Ijust wanted to send a quick response to say how all of your responses are so so touching and helpful, from all angles and aspects.
@DorothyWhippleFan What an amazing daughter and you are obviously an amazing parent - love and strength and I am sure I and many don’t think living apart if it happens is a failure, but a different way of being a family that sometimes happens for reasons that are complex and understandable and more common in adopted and birth families than is acknowledged.
@Jellycatspyjamas thank you -re the brain- I’ve been reading a bit about this today -that I hadn’t really appreciated
@LeoLeo2 thanks for telling me about your lovely son - the trauma underpinning everything is so hard to quantify/isolate I can see
@121Sarah121 thanks for your thoughts and the questions have helped me break it down and think it through in a more concrete way - I’ve been feeling fearful about the hugeness of it all
@Formby it’s become hard for me to think of the fun that hopefully would be part of life so thanks for the reminder- and it’s so interesting that the narrative is very strongly in training and anecdotally that “you know what you will be dealing with an older child” when sharing on this thread is a reminder that isn’t always the case
@Lemoncellocake you lovely duo and their journeys are a microcosm of the complexity of each individual being each having their own challenges that can’t seem to be predicted
@WittyUsername123 ii was completely shocked when I read about the suspected rates versus autism- have been Googling since your post. But as I look into my liFe I begin to remember behaviours and people of all backgrounds that in retrospect I now think might have been on the spectrum in some way - with challenges but a full life. So thanks for making me think about this in a wider sense.

thanks all for sharing with me Many thanks and you have given me a real life perspective that I have been struggling to find and I can’t thank you enough as I have been spiralling with anxiety at the point of matching with this lovely little boy which makes me feel that something is wrong with me when I see so many adopters at my stage thrilled and I have lost that excitement and positivity to fear.

[Chocapple]

Hello again @Beautifulvue

Thank you for your words about me the other day. They are much appreciated.

I hope we have all helped you to know much more about the uncertainty of our children as well as the highs and lows.

The mumsnet adoption community is very tight knit and supportive.

Only you can decide how to proceed now regarding this child. But as I said up thread you will make a fantastic adoptive parent.

Xx

[Whatthechicken]

I don’t know much about FASD, but I’d just like to address the height issue. My youngest (now 7) is tracking at 0.4 percentile for weight and is tracking even below that for height. We think this is due to a combination of extreme prematurity at birth and then poor nutrition for the first year. Her head was small when born and she had a myriad of health concerns because of the prematurity. All of these have resolved now apart from the height. BM did drink during pregnancy.

My youngest has had a paediatrician and endocrinologist carry out all the tests available. They have found nothing of concern. We are about to be signed off by them, she is just small and always will be, probably because of her start to life. She knows she is small, she knows she won’t catch up, but we build her up, we relay the benefits of being small. She will tell people they are rude if they comment on her height. One boy once told her she couldn’t be as old as she was because of her height, her response was to drag a massive branch over to him and say ‘but I’m stronger than you’, She is on target at school, fit, incredibly strong, bright, articulate, funny, determined, sarcastic, a little manipulative at times and just a joy.

[DorothyWhippleFan]

@Whatthechicken your summary of your daughter’s character made me smile and think of Helena’s description of Hermia in A Midsummer Night’s Dream: ‘though she be but little she be fierce’! I bought my DD1 (also small in stature) a badge with this on when we visited the Royal Shakespeare Company while on holiday a couple of years ago. She now wears it on her school lanyard.

[Whatthechicken]

@DorothyWhippleFan oohh I must look that up, that is just a perfect summary! She is just amazing - I do think we will lock horns when she reaches her teens - but I’d rather her be as determined as she is and stick up for herself! We are teaching both the kids about being able to disagree with us and rationalise why they disagree at the minute. But it’s back firing, they are coming up with far too many clever and reasonable arguments!! 😂😂

[Greenpeasnwham]

I don’t post here, but I read a lot. I’ve adopted and have a birth child, and also have worked for years with, among others, young people in the care system after adoption has failed. I’ve also spent time being part of training adopters. So seen it from all sides I guess!
I just want to say, that it’s absolutely ok to say no here. When we adopted, the first four children we were matched with we said no to for various reasons. It broke my heart but I knew our life style probably wouldn’t be right for their needs. The family finder at the time was consistently playing down the children’s needs and bigging up our experience but we knew from experience how things are played down, perhaps not even consciously, on files and we did a lot of research. We also had an amazing social worker who validated our decisions. Eventually we were matched with our daughter who had her own needs, and of course not all were obvious at the time, but we made as informed a decision as we could and I think that we were right to be honest about what our family could provide. It’s always going to be an unknown but FAS can and does in many cases lead to tremendous difficulties and a very difficult home life. Some amazing adopters rise to this but it can also become too much at times. No one has a crystal ball…but you should never go with a match you have serious doubts about. There will be another family that is right for that child and another child that is right for your family. And that’s ok. Hugely difficult, but ok.

[Beautifulvue]

dear all
i can’t thank you enough for all your kindness in writing on this thread. and greenpeas thanks much for the post today. You are spot on in summing up the issues -and you , as others have done , freed me psychologically by reminding me that we don’t have to say yes. And it’s how we have progressed day by day in the process “ have we a reason to say no to the next stage of the process” - if not we have kept going- and so , after a huge amount of soul searching we have gone ahead with the match.
we took each day at a time and have had the advantage of social workers and an adoption medical officer who have been very open and not rushed us. it came down to the confronting of the core reality - that any child will have a huge amount of risk attached - especially concerning alcohol- so there was in our opinion , no way to avoid ‘the fear’. This child has so many wonderful
things about them - in terms not only of advantages in their profile but how wonderful they are themselves as an individual little human. We have been as rigorous as we can assessing the known and unknown risk and in a way - rightly or wrongly - come to the conclusion that for us this child is ‘the child ‘. I think - rightly or wrongly - i am
progressing presuming there may be trouble ahead - but for this day, in this moment , if this little one feels happy and safe and loved and healthy that's all we need as one day at a time is all we have as parents doing the best we can.

your many wise and lovely perspectives reminded us that we are moving into the unknown but also the community is an amazing one -and if people like us ( I have had a very very lucky and privileged ‘ordinary’ life that might seem modest in some way but has been full of riches) don’t step up, then who will?
I am immensely immensely fortunate to be doing this with a partner who really i am on the same page as - for those of you who do this as single adopters or without a supportive partner - i am greatly, greatly in awe of you.
So heading to transitions after Christmas with our little boy and am alternatively terrified and joyous !
thanks so so much to you all. delighted to be joining you as part of the adoptive community. what a ride it all is xx

[DorothyWhippleFan]

@Beautifulvue ultimately, adoption can be a triumph of hope over experience. But if you have hope - and a heart filled with love and acceptance - then you have the key tools to help you be happy in your (slightly different) journey to parenthood. Enjoy your last Christmas of peace! 😅