FAS - feeling anxious and shocked.

[MrsJen3]

My 21 month old grandson was placed with us at 5 months old and the plan is to apply for SGO later this year. I have always had some concerns he may have FAS as I know of at least 3 occasions when mum was very drunk during PG and no doubt there were many more times that I wasn't aware of. However, GS was a good weight when born and didn't appear to have any of the characteristic facial features ( though he did have a small head) so I put my doubts and worries about FAS to the back of my mind and concentrated on falling in love with my first gorgeous GC.
As he's grown his facial features have changed and one day I Googled FAS features and there was an image of a little girl looking like a twin of my GS staring back at me - small head, small eyes, epicanthal folds, short upturned nose, long smooth philtrum, thin upper lip and low nasal bridge. Also, GS developed some behaviours that concerned me i.e. he gets angry very quickly and bangs his head hard on the floor/furniture/cot purposely, scratches his own face in temper, throws things, is very, very active, blinks hard/screws his eyes up a lot and has speech delay. These behaviours could simply be toddler behaviours but I have had 5 children of my own and never known anything like it so my concerns increased. On the other hand he's so bright and loving, sleeps well, eats well and is just so adorable that I can't believe there could be anything wrong with him and kept telling myself I was worrying about nothing .
Last week we saw the peadiatrician about our concerns and, after lots of talking and answering his questions, the first thing he said was "I could tell from the minute he came through the door that this little boy has FAS because he has all the facial features".
After all the wondering and doubting myself the peadiatricians words have knocked me for six. We have now got to see the geneticist but I feel there's little doubt about the outcome and feel so anxious and worried about the future, how will we cope? What if we can't parent this little boy well enough? How can somebody as bright and loving and clever as this little boy have brain damage?

[Kr1stina]

I'm sorry that you've had such upsetting news . Even though you've had your suspicions , being told so directly must be a shock and you need to take some time to come to terms with this .

There is support out there for you - sadly you are not the only GP in the country having to raise their GC because of their children's addiction, and then having to deal with the long term effects on drugs / alcohol on the child.

Your GS is still the bright, loving and clever child he's always been . Brain damage is a spectrum and many people live happy and fulfilling lived while still having problems .

I'm sorry I don't know more about FAS but many other adopters do and I'm sure some will be along soon with advice for you

[Kr1stina]

A quick google comes up with these support groups

www.nofas-uk.org/

www.come-over.to/FAS/fasonline.htm

www.cafamily.org.uk/medical-information/conditions/f/fetal-alcohol-spectrum-disorder/

www.faslink.org

[VeniceQueen]

My DDs best friend has FAS and she is a delightful little girl. She is currently in mainstream primary school and although she does have numerous medical issues and difficulties, she continues to smile despite this.

Your DGS is still the same loving child despite a diagnosis and hopefully you will be able to get support and guidance to help you deal with the difficult times.

[MrsJen3]

Thank you both for the reassurance and thanks Kr1stina for the links, I have been Googling frantically but there are a couple of sites there that I haven't yet looked at.
I keep thinking the peadiatrician must be wrong, how does he know my GS doesn't just look like that? Maybe his behaviour is just extreme toddler behaviour and the speech delay is just run of the mill speech delay? If there is such a thing, I don't even know what I'm talking about or thinking anymore.
Anyway, he's a an a average weight, an average height, his understanding Is excellent even if he can't talk and he's met all his developmental milestones on time - except of course the speech.
I feel like I'm going mad, I keep staring at his sweet little face then comparing it with pictures on the internet. I keep worrying if we'll be good enough parents to this little boy who is going to need more than an ordinary mum and dad like me and DH to reach his full potential.
I'm just so worried for him and for his future, will people think he's odd, will he have friends, be invited to birthday parties or even be happy?

[Mama1980]

Hi I'm sorry you've had such a shock. I Know how upsetting it is, but remember your grandson is so much more than this diagnosis, he's the same beautiful boy he always was, try to view the official words as a means to being able to get him extra help should he need it.
Not sure if I'll be of any use but my youngest has FAS her bm used both drink and drugs during pregnancy, and she went through withdrawal at birth, my daughter is now 2 she has few of the facial characteristics and thankfully has stopped the keening screams but she is developmentally delayed and suffers from seizures. But she also has none of the aggressive tendencies often associated with fas, in many ways it makes no sense and One of the major issues with a fas diagnosis is the huge amount of variation in the way children are affected which means that no one can give answers. Symptoms often emerge over time and manifest in many different ways, a diagnosis in no way needs to mean he will struggle socially etc.
If you don't mind me asking, Have you been referred for further assessment?
www.faslink.org is a great place for information and support.
Hope any of that helps, remember you're not alone (though I know it feels like it a lot of the time) there are lots of us out there parenting children with FAS. For my daughter FAS for better or for worse is part of who she is, and she is my beautiful, utterly perfect girl.

[slkk]

I can only second what others have said. The diagnosis should be your key to getting support and help for your grandson and in itself won't change him or his future. Wishing you strength to remember that he is the very same lovely funny little boy that he was before you saw that photo.

[MrsJen3]

We have been referred to a geneticist and a speech therapist so far but I don't really understand what the geneticist is for. Do they confirm the diagnosis or do they just rule out any gentic problems? Who will give us help and advice? I keep reading about how early intervention is important but what is this intervention, what can we do to help him?
I'm still questioning if the peadiatrician is even right, GS has the features and some behaviours that concern me but nothing as bad as I have read or heard about others have had to cope with.

[Kewcumber]

There are some parents on here with quite a lot of experience of children with FAS - much of it with positive endings (or at least positive middlings!) so hopefullt they will be along at some point to talk about practicalities. But yes FAE/FAS is a spectrum and spectrum doesn't mean a straight line of symptoms/issues but a wide array.

I suspect the geneticist is indeed to rule out any genetic disorders.

I hope you get some answers and some practical help soon.

[MrsJen3]

I'm glad to hear that kewcumber because everything I have found by Googling is so negative and frightening. Unfortunately it seems none of the professionals that are involved (social workers & health visitor) have much experience of FAS so Googling is all I have at the moment.
I'm still very much questioning if the peadiatrician is right though, GS behaviour just isn't as bad as what I'm reading on Google but he has the features meaning it's likely he's affected quite significantly.
Like Mama1980 said earlier in many ways it makes no sense.

[fasparent]

My two have Full FAS both diagnosed DD weighed in at 1lb 12oz , has multiple problems, but is now a young lady works, drives has he own house, Still has Full FAS which she has too live with but is doing well, as she is at the high end of FAS all considered is very brave girl.
All FAS children are effected in different way's . Out come will also be different.
Please PM me if you require any information or good recourses or advice believe me you will have to fight for everything , lots of short cut's though if you know the system.

[fasparent]

Thought better explain my last paragraph, It is unlikely that you will get a full FAS FASD Assessment until child is age around 6 due too child development,
hence you will miss a window of opportunity crucial too children with FAS, which is often missed. Early interventions are important at this age 0 too 7 which help too prevent or reduce secondary problems at a later age.
There are lot's of other avenues you can take prior too age 7. which will access support, Children do no longer have too have a diagnosis or a statement too access support.
We are currently following this route with Two other children NOT FAS or FASD
but likewise they have lifetime serious conditions , support we get for them is
brilliant ,