Guest post: "Now we understand Foetal Alcohol Spectrum Disorder, we understand our adopted daughter better"

[MumsnetGuestPosts]

When we adopted two-year-old Katie in 2010 we knew she had been exposed to alcohol in the womb. It was unclear how much, but there were no obvious signs of medical problems so we didn't worry. After years of miscarriages and infertility we were in love with our daughter and Katie settled in easily. We were excited about taking on the challenge of being parents to our beautiful, fun and articulate little girl. She was meeting all of her milestones and was a bright (if rather busy) two-year-old. When Katie was five we also adopted her brother, Pip, aged seven months, and our family was complete.

We had been told that Katie was born with a small head circumference and might need additional support in school. We didn't know anything about Foetal Alcohol Spectrum Disorder (FASD) and we certainly didn't know the right questions to ask. Then, six years after we adopted Katie she was diagnosed with Alcohol Related Neuro-developmental Disorder. ARND is within the FASD family, but doesn't have the same indicative facial features.

I will admit that the diagnosis has been hard. Katie's future possibilities and welfare are currently unclear and it's hard not to feel angry that the damage to Katie's brain was preventable - although I do have empathy for the challenges faced by Katie's birth mother during her pregnancy.

We slowly pieced together the ARND diagnosis ourselves. We'd been to the depths of despair, frustration and exhaustion as our daughter slowly changed from that cute and busy two-year-old into a restless, sleepless and often angry and violent five-year-old.

We couldn't put our finger on what was wrong. We called her 'Tigger' because she was so bouncy and we frequently described her as 'relentless'. By the time she was five, we were spending hours trying to get her to go to bed and sleep. Meanwhile our lives as a couple were unrecognisable as we often didn't eat until 10pm, let alone have any time together.

We initially put a lot down to the emotional impact of adopting Pip. However we soon noticed that Pip was more able to self amuse at seven months than Katie was aged five. By Year 1 it became obvious she was struggling to understand numbers despite being an excellent reader.

Katie started to get fixated about certain things that worried her and became anxious about germs and being sick. She lied frequently and seemed convinced some of her lies were true. We would have to repeat instructions over and over and home rules were seemingly blatantly ignored.

We were confused. Surely an articulate 5-year-old could follow more than one instruction and remember simple rules? Why wasn't she bothered that she was told off when other children were filled with remorse? Why did her temper tantrums look deliberate? Why didn't she seem to understand that the cats wanted to be put down when they were crying?

We spent hours talking to friends who were childcare trained and to our social worker. We tried everything, overdosing on parenting books, querying adoption and attachment issues and then trying out specialist adoption parenting techniques - but nothing brought any permanent changes.

It was a chance conversation on an adoption support board which led me to research FASD. When I read the description for ARND a penny dropped. The lies - they're called confabulations and are where Katie's brain gets confused about stories she's heard, thinking they have happened to her. Aged eight, Katie can show some empathy but is very controlling of the cats and her friends. We started to appreciate why.

Katie has now been diagnosed with ARND and ADHD and we can finally access the right support - starting with an assessment with a clinical psychologist to fully understand her brain development.

A prescription for Melatonin has revolutionised bedtime, enabling Katie to sleep and for us to plan an evening out soon (the first in over 18 months). Her new junior school has been fantastic at listening to us and supporting her. She feels so much more confident about maths now and is learning new subjects - particularly enjoying French. Her school knows her articulation belies her often lack of understanding. I feel she is understood.

She is still the same amazing little girl with a wonderful singing voice who loves Brownies, gymnastics and swimming and playing with her friends and who we love to the moon and stars. It can be easy to lose sight of those blessings when she is screaming and swearing at us and slamming doors. I've cried many tears and had many dark hours - but at least we now understand her better.

Our job as her parents is to help her overcome the challenges she faces from the damage to her brain and support her to become the best that she can be. We now feel better equipped to do that with paediatric and school support and using online support from the various support networks available for parents and children who have FASD. It's all a step in the right direction.

If our story rings a bell, the following organisations can help provide information and support: Foetal Alcohol Spectrum Disorders, FASD Trust, National Organisation for Foetal Alcohol Syndrome, Adoption UK, All Party Parliamentary Group for FASD.

[Claraoswald36]

Amazing post I come across a lot of diagnosed fasd at work and plenty of suspected. The facial features are a red herring it really depends on the point in gestation when the foetus is exposed. The mention of confabulation sod fascinating though and I will be researching that

[NorthernLurker]

Thanks for posting. What an interesting story. Whilst what has befallen Katie is so sad in that it was of course avoidable, I think she has been very fortunate in having parents as empathetic and committed to supporting her as you clearly are. I wish your family all the best.

[GetKnitted]

sending this to a friend who might need it! thank you!

[iwantanewcar]

My cousin has/d FASD. He is now in his early 30's - holds down a good job. But he did struggle at school with academic subjects, particularly maths. He's found his own path, but the circumstances of his original family and the chaos will be with him for life. Wishing you all well,x

[fasparent]

Been down the FULL FAS experience DD Weighed in at 1lb 12oz , congenital heart problems, central nervous system dysfunction's, a very poorly baby, developed very slowly as did her secondary problems too many too mention, had too be home educated. Adopted at 2 months, is now a beautiful independent young adult drives her own car , just bought her house. Still has FAS a lifetime condition. Has been very brave has even presented Medical Conferences regards the negativity surrounding fas fasd too the way forward with good understanding and interventions.

[Devora]

Thank you for this post. My dd's birth mother drank very heavily in pregnancy, and we warned about the uncertainty caused by this. Strangely, we were discouraged from asking too much about it - when we had our (much-delayed) meeting with the adoption agency's medical advisor, she hugely disapproved when I asked about FAS, telling the social worker that she thought I would be a very bad adoptive parent as I was clearly only wanting a 'perfect' baby. I got the message that asking questions about this was not approved of, so I shut up.

Six years on, I'm still wondering. Much of what you describe with Katie rings bells with me: the anger, violence, inability to self-entertain, confabulation, anxiety and controlling behaviour. Of course, these could have other causes too. Your post is making me wonder if I should be asking more questions, though...

[fasparent]

Yes you are quite right Devora , in all UK FAS FASD support groups around the UK can say that majority of members are Adoptive parent's , one strange out come is the Loss of the recent court case regards the FAS child, even stranger is the recent Adoption support fund which includes free assessment and support for children Adopted who may be subject too FAS FASD, worth looking at.

[Shockers]

Thank you for this, Gem. Our very own Katy has FAS. We adopted her at two and a half and she is now 17. A wonderful Ed Pysch explained the confabulation issue to us. I had become really concerned about how proficient a liar our daughter was... th the point where I would doubt my eyesight, and sanity. He explained that Katy couldn't tell us 'why' she'd lied, as she wasn't aware that she had. Therefore, questioning her would frustrate her and make her angry.

This Ed Pysch also helped us to get her a place at a school for children with SLD. Since starting there, her meltdowns have been few and far between. At her old MLD school, her ability to articulate herself had completely masked the fact that she only understood around 30% of the conversation around her. She had simply learnt acceptable responses and phrases. The correct educational setting is, in my opinion, priceless.

Thank you again.

[StealthPolarBear]

This is hugely interesting and eye opening. Thanks to everyone who shared their story.
Is there any understanding of the challenges faced by parents (and young people) with arnd as teens? Does it get 'better' as you and they have already learned coping strategies or worse in the usual way as hormones kick in?

[Granny61]

I agree, the FAS facial features throw many off, only those who have good knowledge of the full range of FASD conditions realise that only around 10% of children have the features, infuriating if you have a child without these features.

[Granny61]

Stealth polar bear, unfortunately as these children get older the problems get worse in some cases, it was lovely to read the success stories on here too, but especially without the correct schooling, support, understanding and diagnosis lots end up in the criminal justice system due to the lack of empathy, understanding of consequences and other complications such as being socially isolated.

[ThreeBecomeFour]

Thank you everyone for all your replies. It's really helpful to know that we are not alone in wading our way through the diagnosis and issues. I am struggling to get more information about behavioural support I will say. I worry about the future a lot and what will happen when Katie reaches puberty. There are so many worries I cannot even begin to list them but mostly concern her safety and potentially ours and being led astray by people. I know I would like to hear more stories about people with FASD who have been able to have positive outcomes. I suspect there are many people living with FASD who don't realise they have it. People coming into the criminal justice system who are being diagnosed are not the full picture. I'm hoping that as more people speak out we will start to see a more complete picture arising. I will certainly keep writing about our experiences as a record and reference point.

[ThreeBecomeFour]

That feeling of not wanting to be a less than perfect adoptive parent is one I remember well from our first adoption. I learned a lot through that adoption and felt very differently through our second adoption. Sadly I suspect many prospective adopters aren't encouraged to ask questions which is a shame because children need to be placed with adopters best suited for their needs. If we aren't given a full picture how can we make that decision?

[Threesocksnohairbrush]

I also have a delightful nine year old who displays many of the issues you have faced with Katie - I am interested to hear that the OCD type issues may have a connection. Nearly everything has been attributed to attachment but my gut instinct if I'm honest, is that it's too easy an answer.

I would be interested to know more about how you pursued the ARND diagnosis. DS certainly doesn't have the facial features or generalised learning disability - though again really struggles with maths. So there never seemed any point in asking for an assessment for full blown FAS. If there was somewhere/one who would look at a broader spectrum of diagnosis I'd be really interested to consult them. Realise you may not want to share on the open board though, happy to pm you.

[fasparent]

In the main it is Mainly FAS FASD Charity's such as, Fastrust, NOFAS UK, and fasaware UK. all run by Adoptive parents who lead the way on prevention's and interventions.
Most professional's are reluctant too assess for condition until child is age over 6 or over. Yet it is well known that the window of opportunity for them is from age 0 too 7yrs., Reason why our dd had opportunity, were able too start interventions very early , not that its a cure but reduces the severity of secondary issues. Waiting for a diagnosis can be detrimental if there is History no reason why interventions can not be put in place, while you wait for one, these would help a child with any condition as FAS FASD is a umbrella term which has many Complex conditions attached .
PM me if any one wants resources.

[Shockers]

I meant to add that our Katy is also a proficient reader, but at 17 still cannot tell the time and has little idea about money and its different values. She is working at around a year one maths level.

Puberty has been challenging because we still need to help her to wash properly. She knows what to do, but doesn't understand that if it isn't done fully, she will smell and have spots. Her personal hygiene is problematic for that reason, and because she seems to produce triple the amount of grease than an ordinary teen... we're talking fringe fully oiled and stuck to her head within 2 hours of washing her hair.

She appeared to breeze through starting her periods, until someone at school must have told her that it's not something to talk about. She took this literally and for 3 months afterwards we would discover when it was too late and she had marked the furniture, or bled into her clothes. Eventually we managed to persuade her that telling us, or a teacher was good... just don't announce it in the checkout queue in Sainsburys!

Because Katy also has LD and epilepsy (this is currently fairly well controlled), she will never be able to live independently, but we are looking into a local scheme where people with additional needs live in shared houses with carers. This is something that we may use for respite care until she is older, then eventually a full time option, if Katy is agreeable to the idea.

The houses match residents in terms of age, interests and abilities and are fantastic. It's a private scheme, but is well monitored and very well thought of in our community.

Joining a carers group for parents of children with additional needs has been really helpful. I have also made some good friends within it.

[ThreeBecomeFour]

Threesocksnohairbrush...... I spent a lot of time, like you, trying to work out if there was something wrong or if I was imagining it. It's so hard because there's so many behaviours that can be attributed to attachment and some of them probably are but with a Brucie bonus! I've written a longer post on my blog detailing how I went about formalising the diagnosis but as soon as I read about ARND I was convinced. My GP initially didn't want to support a referral to a paediatrician and wrote ASD on the notes until I stopped him and corrected him. I was initially told to go through Katie's school for a referral but I refused to accept that answer (years of youth work and being an adopter have made me tenacious). My hubby luckily works within the NHS so he sent an email to someone he knows asking if there was anyone who knew about FASD locally. A name was given and we approached the consultant to ask if they would take the referral. When I had agreement I returned to the GP and told him who to refer us to 😝 Ironically the paediatrician we saw does a lot of work around FASD assessments for our LA so I'm a little frustrated that it wasn't suggested by our PAT SW who we're seeing. Anyway we saw the paediatrician and she did lots of checks and measurements to rule out FAS and I learned that it's not just facial features they check for but also a specific line on the hands like a hockey stick and also the shape of the ears (they are flat in shape at the top with FAS). Katie does have the small head circumference and a documented exposure to alcohol so taking all the information we gave into consideration the diagnosis of ARND was given as we had suspected plus ADHD. We're now regularly seeing the paediatrician and are hoping to have a full psychological profile from CAMHS (as an experienced youth worker and adopter I'm still not holding my breath on that one and we may seek funding to go to the clinic in Surrey run by Dr Mukherjee if CAMHS can't see us locally or pay for a private assessment). Does that help answer your question? Xx

[ThreeBecomeFour]

Shockers....do you find that your daughter is really literal? My Katie is. She's still wrapping her head around the fact that films aren't real but just people acting. Your poor daughter thinking she shouldn't talk about it.

The hygiene issues must be really tough to manage. Our Katie's capable of showering and washing her own hair etc although she'd use all the shampoo in one go if I didn't put the right amount in her hand lol.

[Shockers]

Ha! I know all about that too... half the bottle running through her fingers and down the plug hole!

I think she understands that the people are just acting, but we have spent a lot of time watching youth performances, some with her brother acting.

She does still firmly believe in Father Christmas and the Easter Bunny. She was convinced that she'd seen FC in the sky on Christmas Eve, so wrote him a wonderful letter. I must admit that I cried when I read it.

Katy also thinks that if a character (somebody dressed up in a suit) waves, they're waving at her... even when there are 20 children between her and the character. She has asked to go to EuroDisney for her 18th, but I'm a little worried that she can't separate the illusion from reality... but does that really matter?

There was a time when I wouldn't have left her alone with an animal, or a smaller child. Now she's fantastic with anything that needs nurture, and I'm so proud of how far she has come. The cat chooses her bed to sleep on (with her in it!) because he knows he's guaranteed a good tickle under the chin as they're nodding off.

She's a star .

[ThreeBecomeFour]

Shockers.... Your daughter sounds lovely and I'm incredibly relieved to hear that she's come on so well with the animals etc. I hope that development happens here....soon lol😃

[Granny61]

Hi all, I have never had an official diagnosis as I am a foster carer and mum will not confirm drinking during pregnancy ( although still not able to make contact regularly due to ongoing alcohol issues since a teen ) I have found fasduk a closed group on Facebook fantastic if you search it it has a leaves picture, the people on the group are adopters, foster carers, birth mums and also FASD adults... Ask to join and say Bernie Bubble re ommended it...you will get loads of advise x