Experiences with FAS

[user1479136681]

Just wondering what experience you have had with Foetal alcohol spectrum. We have been linked with a little boy whose birth mum drank throughout pregnancy. We've spoken with his social worker and medical advisor, who said basically he's hitting milestones at the moment and doesn't have the facial features but here's what to watch out for. The FC was previously a paediatric nurse and doesn't seem worried. They have been really good at telling us what to look out for in the future and what support we can access, how to go about getting a diagnosis etc.

He's almost 12 months old at the moment so we don't know how he will be affected in the future. I find that kind of uncertainty quite difficult! Although of course will be committed to him no matter what.

I'd like to hear about your experiences. Thank you :)

Hi, I have a young one on the fasd spectrum. Most kids on the spectrum do NOT have facial features, I think the number is 9 out of 10. If birth mum drank through pregnancy I would think ongoing monitoring will be required. This LO is at high risk of FASD.
Our LO did not appear to exhibit symptoms till age 3 and it took us a long while to obtain diagnosis for a number of reasons: post adoption support telling us it was all related to trauma and attachment, lack of info in the CPR and finding a paediatrician who was knowledgeable who could diagnose.
My LO is an absolute joy and with the right support is doing ok. Things are changing in the UK and there is now increasing awareness around FASD but still a long way to go.
Having pre natal alcohol consumption clearly documented for you should make any future assessment/ diagnosis less of a battle.
Any reading you can do on FASD will be helpful. Diagnosis, support, benefits and school can all be areas of challenge, as well as having a child with add needs.
Would I do it again if I knew my LO had FASD, absolutely! 😁

I totally understand how you feel re-uncertainty! I've been researching a lot about FASD since it does look like it's almost a fact that and adopted LO would have it ( I think 75% of the children in care have it or at risk? ) but, there's no much about real life experiences out there. I know that looking up any illness online shows only the extremes ( e.g I have Lupus and when I look at what they say, it's scary as hell but, my case is so mild that I have almost no symptom and have been living with it for 20 years ). I'd really love to hear from adopters on this and understand the real day to day for both severe and mild end of spectrum to be prepared for everything.

We adopted a child who was at risk of FAS. He may have it. We don’t know yet. He has no facial features. He is a handful at times but we don’t regret adopting him. Any child coming from the care system is likely to have some issues.

If he has FAS I think it is reasonably mild - and BM drank a lot.

I don’t have experience of FAS but I’d be asking lots of questions about whether mum might have also used drugs during pregnancy - it’s relatively unusual for birth mum to only use alcohol in pregnancy. Not necessarily talking about illegal drugs but prescription drugs like Valium and tramadol can be an issue. They may know that she’s only used alcohol, or may have no idea but it’s worth checking cos many professionals focus on alcohol because of FAS, and brush over other substances.

it does look like it's almost a fact that and adopted LO would have it

This is nonsense. There is no evidence to support this claim. An estimated 2-6% of the whole population may be affected to some extent but saying that all adopted children will have it is wrong and dangerous. The 75% figure is the estimate of birth mums who drank and/or took drugs during pregnancy. But it’s an estimate - not a fact. Moreover, drugs don’t cause FASD and the outcomes for children whose birth mums drank are variable - some may have FASD but not all - to some extent it’s a lottery.
It’s important to be aware of the potential of this, but not to assume that all adopted children have it.

Good to hear that you would do it again even knowing about FAS @Niffler75 :) I want him to be content and kind, but I don't have expectations about him being an A-grade student or whatever. I think we're well placed to support him with learning difficulties. But hopefully he will be able to live an independent adult life. Birth mum's drinking is documented in the CPR but I hadn't thought about even post-adoption support questioning a diagnosis! So I'll try to get more in writing maybe from the medical advisor. Do you mind if I ask what kind of symptoms your LO exhibits?

@jellycatspyjamas unfortunately it's documented that birth mum was also using synthetic drugs. We've been told there's not much research about that but that it could lead to lack of sense of danger and increased inability to judge risk. She also smoked a lot and he has already been I'll with bronchiolitis, poor little dude :( he really has it all stacked against him! I will ask about prescription drugs too as I hadn't thought of that before.

FC says he's on track with his speech, babbling etc. I'm certain he won't get away with no issues but will have to wait and see what comes up... I guess at least we know what to look out for so it won't be a complete surprise.

@Nadelemis you're so right about the extremes!

@Hels20 how old is your LO ATM?

@Sugarfreejelly Please, have a look at this report from NOFAS: www.nofas-uk.org/WP/wp-content/uploads/2018/05/HearOurVoicesPublication_FINAL2_ForWebsite.pdf It says: " 27% of Looked After Children referred for an initial
health assessment had a diagnosis of FASD compared with 3% of all new referrals to community paediatrics and
75% of adopted children had been
exposed to alcohol in utero). That's what I was referencing ( If you read my comment, I mentioned that I wasn't sure if it was diagnosed or at risk ). Either way, qualifying others' comments as nonsense is a bit rude in my opinion. I commented in this thread because I am at the first stages so pretty much still trying to understand it all and I wanted to hear from adopters about their experiences regarding this topic as I am struggling to find real life experiences ( again it was mentioned in my comment ). I simply need to understand -same as user1479136681 - what are the realities and was hoping to hear people's stories to gain a deeper understanding. Reading reports and official statistics is fine but, theres' nothing like hearing from people who have been there done that

As a side note I'm really regretting not choosing a good username like you all have

@Nadelemis and @user1479136681 yes you are correct to cite this research. If I can point you in the direction of CanFASD website, Canada are over a decade ahead of us in terms of research. FASD is emerging as the most common neurodevelopmental condition over autism.
Also check out Nofas UK and the FASD network UK.
Keep posting and I will try to assist. I am sure others will be along to offer support. I used to post on the Adoption UK forums but not many people use those now!
It is important that prospective adopters are aware of the new and emerging research on the subject. Of note I come from a science and research background. 😉

i have 2 diagnosed with FAS.
Their symptoms are fairly extreme - damage to hands & feet, swallowing problems so severe 1 is fed via a tube in the stomach, moderate learning difficulties, speech and language difficulties, behavioural difficulties.
they both arrived without a diagnosis but it was known and documented that birth mum was drinking.

Hello, I'm raising my 5 yr old grandson who was diagnosed with FASD at 3 yrs old. His mum used to binge drink during pregnancy so I knew it was highly likely he would be affected to some extent.

When he was placed in our care at 5 months old he was just like any other baby, though he did have a small head circumference (almost on the bottom perecentile) but apart from that nothing to indicate any problems.

As a toddler still no issues, met all his milestones, slept well and thrived but would bang his head on the floor if frustrated or upset which I was told lots of children do.

By the time he was 2/3 yrs old I was certain he had FASD as he had obvious facial features, was pretty full on, never stopped unless he was asleep, easily frustrated and would lash out or bang his head/pull his hair/slap his face with the frustration.

At 2.5 yrs old he was excluded from nursery as his behaviours were escalating no matter what they tried. This was a low point for us, I didn't think any other nursery would take him if they knew he'd been excluded and I was worried about my career if we had no childcare.

Luckily we found a nursery that were amazing with him, even when there were problems they dealt with them and learnt from them and put strategies in place to help him.

Now he attends a wonderful nurturing mainstream school with full time 121 support, he is behind academically but he is very happy there.

Life at home though is stressful and crazy at times!
He has regular outburst and full on meltdowns as the tiniest of things can frustrate him.
He lashes out and throws things or hurts himself and others when frustrated.
He has significant sensory regulation difficulties so is constantly climbing/jumping/somersaulting.
He is extremely rigid in what he will wear and we have bought endless pairs of shoes or trainers that go unworn because they don't feel right and he has worn shorts every day this winter so far.
He finds transitions difficult so you always have to be planning ahead to remember to give him significant warning that we're going out or its bedtime etc.
He has poor impulse control so as soon as a thought pops into his head he's often done it without thinking of the consequences - on Saturday he decided to dance on top of my car (mpv so quite high) in the middle of a busy asda carpark then jump off it he's so quick he was up there before I knew what was happening.
He growls sometimes when he's anxious or upset.
The gap between him and his peers seems to be widening as they get older as in some ways he is functioning at half his age.
Our lives seem to revolve around him and keeping him calm and regulated.

BUT he is the funniest, craziest most adorable and loving little boy! And he sleeps from 9pm til 7am each night which I am eternally grateful for.

Some days it is really hard but we absolutely adore him and accept his behaviours and outburst are beyond his control and down to the damage to his brain which somehow makes it easier to cope with.

DD, now aged 12, has some difficulties probably connected to FA exposure, though as it is on the mild end of the scale, and there was also early trauma, it is not a definite diagnosis. It was raised as a possibility soon after she started school, became the leading explanation a couple of years ago in a neuro-developmental assessment, and 6 months ago a follow up assessment has pretty much confirmed it as the most likely explanation (as other trauma-related symptoms have fallen away).

She has trouble with executive functioning - organising herself, staying focused and not being distracted, and coping with frustration. It only really shows at school, and unfortunately her school has not been supportive (in the process of changing now). Her cognitive profile is well within the 'normal' range, but doesn't have a consistent pattern, so she is above average in some things, and only borderline average/below average in others. She also has various sensory 'quirks', and speech and language issues. All minor, not to the point of a clinical diagnosis (except a stammer), but added together have a bigger impact than each on its own.

She is also a talented dancer, kind and generous, has a strong sense of justice and ethics, and is great fun to be with! Altogether incredibly rewarding to parent, very loving and with an amazing sense of humour. There is every prospect that she will live independently, find a career that suits her, and have healthy and positive relationships.

At 12 months only the most extreme neurological damage will be showing. The chances are, from what you have written, he is on the spectrum, but as you already know, the likely effects of that are difficult to predict.

My best friends little girl (adopted) has recently been diagnosed with FAS. She had to pay for a private appointment (£2000) to get the support she needed. Her DD is almost 8.
She struggled because her DD was able to hold it together when at school, she is slower to keep up and some speech problems but because she was ok at school, they didn't see a problem.
The problems arose when she was in her "safe space" it's like everything she's holding in comes out. She's struggling with sleep currently and is also showing very early signs of puberty which I believe is common for FAS children.
She shows many almost autistic signs but regardless of what she is going through she is a lovely little girl.
Mum is struggling at the moment with how to support her but now someone has actually listened and she has a diagnoses, people are finally starting to listen to her.
She also found a local support group too which has helped massively.

All your replies have been so helpful so far and I have loads more resources to look at, thank you everyone. Your children sound wonderful!

I'd previously read so much about FAS but very little about personal experiences of it. It seems the key thing is getting a diagnosis and finding supportive schools.

I've also read that some of the symptoms are similar to ADHD, which I have some experience of in my family anyway so not too far outside of my comfort zone.

My 9 yr old dd is on the fasd spectrum. She has all the facial features and is physically very small for her age (age 6 clothes). She also wears hearing aids. She has lots of sensory integration issues and has regular OT and physio.

She is in a mainstream school - no behavioural issues but has problems with executive functioning, concentration etc which is really common with children on the spectrum. We are also really beginning to notice how the maturity gap between her and her friends is beginning to widen.

As you say, being on the FASD spectrum can present with similar symptoms to ADHD. She is really high energy and impulsive too. At home she can have meltdowns, but you will learn lots of strategies to deal with these/sidestep them!

Mostly, she is just a truly lovely beautiful little girl, with so much personality. She does have some challenges, but she is so loving and spirited and we adore her. We do worry sometimes about how things will pan out in the future as she can be so naive and trusting, but adopting our child with a known diagnosis of FASD has been truly the right thing for us.

DD1 has FASD. Her difficulties only really emerged from around 4 onwards. She is wonderful and I feel so lucky to have her BUT it can be really, really hard going. She really struggles with her self-esteem, thinks she's stupid, self-harms and says she wants to die. She's physically and verbally abusive to us and DD2, which means she needs an eye kept on her all the time. Things can escalate very quickly. She is the apple of my eye, but oh my goodness, it's extreme parenting.

FASD is permanent brain damage. It doesn't get better, but we are gradually finding better strategies and supporting DD1 to find her own strategies to regulate herself. We're helping her find things she's good at to build her self-esteem and are trying to relieve some of the pressure that everyday life puts on her.

I think it's important to be clear that FASD doesn't just affect whether your child will be an A student, it can, though might not, impact on so many aspects of their (and your) life. It is likely also to impact on things like whether it's practical for you to go back to work.

Saying that, I would adopt DD1 100 times over in a heartbeat, because she's my kid and I can't imagine life without her.

Wow there have been some wonderful responses here. Amazing our know kids are so different but a lot of the challenges we experience are so similar. Maybe we should start a specific FASD support thread on here. We could post experiences, offer support and include resources that doorbell others. Thought anyone? 🤔

Ok my predictive text is driving me nuts. Disregard 'doorbell'. It was meant to be resources that could help others! 😂

@Niffler75 yes I’d be up for that. No support groups or anything near me, so would be good to speak to people who understand

@Stolenkisses awesome! 😃 Sorry to hear there are no support groups near you. There is one near me but as I current home educate my son (long story) I cannot get to it very often.
Your daughter sounds amazing. Oh yes it's exhausting isn't it. We tried a nice activity today that didn't turn out as planned due to my son's sensory processing issues! He also has hypermobile joints and possible visual integration issues that are also linked with FASD. If my memory serves me correctly there are over 300 co morbid conditions associated with FASD. It's a whole body diagnosis. 😕
Anyone else have any thoughts on a FASD thread?

@Niffler75 I think that's a great idea!! I am nowhere near the point of having a LO placed with us so I can't possibly know if I might be needing that support in the future but, I think it could be valuable anyhow for everyone considering the adoption route. From all my reading, I am starting to think that there's actually a lot of misunderstanding & misinformation regarding the alcohol consumption during pregnancy.I feel that there might be many cases where kids are not diagnosed as some mild FASD symptoms/behaviours are similar to other trauma related behaviours.

Also, thanks for pointing out to the Canadian FASD website!! Very useful!!

@Nadelemis I think you are absolutely right. It is currently under diagnosed in the UK. I think as an adopter anyone thinking about adoption needs to have a good understanding of issues related to FASD.
I think this could be a really good place for people to find information and mutual support.

A thread will be really useful.

We've been told today he probably has strabismus in one eye and is having a follow up appointment about it.

I feel committed to this kid but also quite daunted by what we may be taking on and meeting his needs.

@user1479136681 Strabismus is pretty common in the general population. Eye problems I think are also a co morbid conditions associated with pre natal alcohol exposure.
It sounds like the LA you are working with are pretty switched on which is very good.