Newbie!

[Flower123]

Hi,

I'm new here.

I have 2 adopted children with suspected FAS. We are waiting for a formal diagnosis. Any advice and help greatly appreciated! They both have autism and other issues too so it's hard to know what's what and what will help!

[Sunshinerain]

Hello flower

My two children are adopted, my daughter is 11 years old (we've had her from 8 weeks old) and she was formerly diagnosed with FASD last year. It was actually a reasonably straightforward diagnosis, as all the boxes were ticked. We only decided to look into the possibility of her having FASD the year before because my sister-in-law had been on a course regarding it, and she asked us what we thought about our daughter maybe having it! We had always, up until then, thought her symptoms were hereditary, because no one had ever said that alcohol had been an issue with the birth mother (though everyone knew it had been with the birth father) I feel silly that it had never occurred to me before, because when I looked it up it was like a LIGHTBULB moment!!

We are now looking into FASD regarding our son (who is now 9 years old) but his isn't so obvious, they are not ruling it out at all, but he has classic Attachment Disorder (even though we've had him since he was 10 days old) many of the symptoms can display themselves the same!!

Obviously there isn't actually anything as such that you can do about FASD, but it makes such a difference having an understanding of why they are like they are, and being able to advise the schools.

I actually felt very sad for my daughter when I realised that this was what she had (she has very low working memory), because of the realisation that this had been inflicted on her and wasn't, as I thought, hereditary!! That was a very sad, and emotional moment!!

I hope you get the help you're looking for. Good luck with everything.

Kind regards

Sunshine

[FamilySupport in reply to Sunshinerain]

Hi, in our experience, you might find that your son also has FAS not/as well as Attachment Disorder. As a rule of thumb, the longer a child is in a stable placement, and especially when in your case they were so young at placement, it is increasingly likely that it is disability (ie FASD) that you are dealing with rather than attachment issues. Unfortunately, often when children are adopted or fostered people immediately go down the attachment route, whereas when children are with birth family they go for bad or poor parenting line first - everyone considers disability second!!!

You will also find information and support on our facebook group - facebook.com/groups/5155166...

Find your nearest Link (support) group too and go along and meet some other families and children. Drop an email to Diane at [e-mail].

For additional support in school look at fasdineducation.co.uk

Hope this also helps!

[dianakitten15]

Hi,

Firstly, If you have not done so already get yourself a copy of 'Parenting a child with an invisible disability' book available from Amazon at this link amazon.co.uk/Foetal-Alcohol...

This book is written by Dr Mary Mather and Julia Brown (CEO FASD Trust) and has lots of helpful parenting tips and advice about FASD.

Secondly, make sure your children's needs are being identified and adequately supported and met at school. This makes a tremendous difference to how they function and behave at home. Speak to your school SENCO (Special Needs Coordinator) about an EHCP (Education, Health Care Plans) for your childrens. Start off this process now (if you haven't already)

I hope this helps.

[Flower123 in reply to dianakitten15]

Thank you, I have just ordered this book

[Ansndsuz]

Hi,

I haven't got much time as on way to work but I just wanted to reply with some things we've found help. To save time I'll put them in a random list of things that have helped us with our four year old who has just been diagnosed with FASD.

FASD is a spectrum like autism is and effects people differently. It mimics lots of other neuro developmental conditions but isn't the same as them. We feel it's wrong to diagnose our FASD kids with autism, ADHD etc. Our son has elements that are similar to autism, ADHD, oppositional defiance disorder, sensory processing disorder but for us these elements are all part of FASD which is brain damage that effects different parts of the brain in different ways. There is a severe lack of awareness of the condition including amongst professionals so we have to be assertive about what the condition is and the particular ways it manifests along with the particular package of therapies that help.

Things that help:

Getting a diagnosis from genetics department - referral through GP.

EHCP at school

Funding from adoptionsupport fund and EHCP for one to one support from a teaching assistant all the time if possible.

Patience, calm, waiting for responses and for them to do things

Removing attention as a way of guiding behaviour

Being very clear on what's coming next, using now and next picture boards and giving warnings before changes in activities

Not telling them about activities too far in advance to avoid perseverance.

Modelling behaviour and telling them what to say and what to do rather than what not to say or do

Repeating, repeating, repeating

OT and educational psychologist

Recognising degree of sensory needs, doing a sensory diet to suit hypo and hyper sensitivities which includes LOTS of physical activity and running, tumbling, jumping, deep pressure etc - this all depends on their sensory profile.

LOTS of praise and recognition

Lots of affection and squeezy hugs etc

Therapy and respite for the parents 😉

Krill oil dissolved in a syringe

CDP choline

Multi vitamins without colours

Good nutrition without additives

Laughter and enjoying the moments of the good times

In the bad times trying to remember that this is a physical disability and it's not their fault and behaviour isn't intentional. Not always easy!

Lots of reassurance that you'll always come back, always love them etc.

Support from other special needs families.

Hope this helps,

Anna x

[Flower123 in reply to Ansndsuz]

Everything you say here is so relevant to my too, but these two things in particular really ring true;

Modelling behaviour and telling them what to say and what to do rather than what not to say or do

Repeating, repeating, repeating

I have to reteach my daughter things over and over again as she simply forgets! The clearer and blunter I am with telling her what to do the better she responds. Telling her what not to do is pretty pointless as she says "yes mum" and then proceeds to do it anyway. She is also a very slow processor. She likes a very simple clear life.

[Ansndsuz]

Whoops, three more v important things I forgot:

Routine, routine, routine, they need structure for their brain like s brain wheelchair

Calm Space that they can go to when overwhelmed

Getting them to ownn and understand their diagnosis when they're older

[Flower123]

Thanks so much for all of this, very helpful

[Flower123]

Our children both have various diagnoses already (Attachment disorders, autism etc) but for our eldest in particular we have always felt there is something different going on and that nobody has ever got it "quite right" if that makes any sense! She has absolutely no motivation and very much lives her life for the here and now only. She makes very bizarre decisions and tells lies a lot, believing the lies to be true we think. She has no real concept of time or money and never really wants anything. She absolutely loves to copy and is great when supervised by a good role model, but when unsupervised is simply dangerous. On meeting her, people often think there is nothing wrong (and often question me when I say she needs supervision etc) which I admit I often find difficult to deal with. She is 17 and is not independent at all but has the ability if that makes sense, but not the inclination. She cannot be left alone which is hard. She doesn't mind this at all and is quite content to be told what to do all the time, in face prefers this.

[Ansndsuz]

Hi Flower,

That sounds very much like FASD to me! It really frustrates me that it gets overlooked and misdiagnosed! There is so much emphasis on attachment with adoption but realistically most kids now are adopted in part due to drug and alcohol issues, probably often a bit of both and a lot of the time it is that that causes the issues. So many people seem to be in denial about that!

[Flower123 in reply to Ansndsuz]

I feel very dismayed that alcohol was never mentioned in any paperwork about the children when we adopted them, yet now we have discovered that social services were very aware she was drinking throughout her pregnancies. We have spent nearly 11 years trying to work out what was wrong. Camhs suggested it last summer and it was a real lightbulb moment when I researched it. We were referred then for an appointment to diagnose it but months on still haven't got one.

[dianakitten15]

Hi there,

Speak to your GP/paediatrician today, keep it simple, and tell them that your child was pre natally exposed to alcohol and that you already have waited 11 years (due to lack of information from your LA) in trying to get your children's needs met and that you want an urgent referral to clinical genetics for diagnosis. Unless your children are diagnosed it is very difficult to get the right support for them in school ie. EHCP. I share your dismay, like many others on this site, and you are certainly not alone in having gone through this experience. This lack of information was clearly unacceptable and i think that as carers for these children, we all begin to realise that the only person with our children's best interests at heart, is yourself as their carer and observer of their behaviours 24 hours per day. Therefore, you need to take charge and move this along, in order to get your children's needs met and in turn, get the right support in place which will help your child and you as her family. Don't ask - assertively tell.

I hope this helps.

[Flower123]

Hi,

The book you have all recommended arrived today and I couldn't put it down and read it cover to cover. I had tears in my eyes on nearly every page as it perfectly summed up my daughter in oh so many ways. I have ordered copies for other family members too.

[Ansndsuz]

Hi again,

Just wanted to echo Diana's comments. I think the way to get a diagnosis is to be very assertive. We went to genetics armed with loads of information and told her all the ways in which it is definitely FASD. I think it helped that she was that rare thing of actually being knowledgeable about FASD so asked things like whether he knew his colours and looked to see if he had the hockey stick palmer crease - which he does. We got a diagnosis within weeks after other genetic conditions were ruled out through a blood test.

Good luck,

Anna