FASD

8 replies

aladdinsane · 29/08/2013 17:10

My DD has just been diagnosed FASD
She has had an attachment disorder diagnosis for years
I am not surprised by the diagnosis but still upset and it explains a lot
I am worried how she will feel when she is old enough to be told, it feels a very shameful and loaded diagnosis
I feel myself that i cant tell anyone
I will find a support group but there is nothing close- we are in a very small place so I am careful about talking too much- it all feels very lonely at the present time

OP posts:

shockers · 29/08/2013 17:24

My DD has the same (both) diagnosis, with LD and epilepsy thrown in. It's not something I really tell anyone unless they need to know. I gave her school a lot of info, so they'd understand some of her behaviours, but it's not anyone else's business. I once mentioned it to an anaethetist (sp?) that was prepping her for an op and he looked at me as though I'd crawled out from under a stone... his problem, I'm not going to start explaining to strangers that I'm not DD's birth mother!

The feelings will subside in time, they did for me anyway... you just get on with life as you always have, but with a little more understanding.

DD knows, but I made sure I didn't show any emotion when I told her.

Good luck... how old is your DD?

Original poster

aladdinsane · 29/08/2013 17:35

Thanks shockers
she is 7. I am not really surprised but it still is upsetting to get the formal diagnosis

OP posts:

RandomMess · 29/08/2013 17:39

I can only sympathise with how hard that is going to be at times.

fasparent · 29/08/2013 23:54

Have a dd with full FAS and ds with FASD . Please do not worry too much there are lots of intervention's that really work . Know it will be difficult but you will have too share with professional and school too access the best support. We were not as fortunate as little was Known when just had too research our self's and get on with it. One thing that we have learned that there is too much negativity surrounding FASD and FAS. Our two are fine now but will always have their conditions but can control it, both are young adults and working full time, driving and living independent. We and other parent's most are parents of adopted children with FAS FASD share our experiences , raise awareness
facilitate support group's, supply FAS/D Accredited education too colleges, university's, schools and the NHS.
Nothing shameful its all about applying suitable strategy too each child as all are effected in different ways . FASD and FAS are chromosome disorders so use this term if it feels more comfortable.
See www. fasaware.co.uk for more details and list of support groups

Moomoomie · 31/08/2013 11:18

Two of my three daughters have FASD, diagnosed last year. I agree it is on a need to know basis, school know. Parents of school friends who don't know they are adopted are told they have a condition similar to ADHD and ASD. Other parents who I know well I have told.
On a practical note, have you applied for DLA? We get it for youngest dd. worth looking into.
I am very honest with the girls, they know that their brains have been damaged because birth mum drank alcohol.
FASDuk are a good group, they are setting up lots of new up port groups all over the UK.
PM if you want to chat more.

Jrb14 · 11/09/2013 18:40

This week the FASD Trust is a guest campaign on Mumsnet. They provide lots of support and advice.

fasparent · 11/09/2013 23:16

Good reading for parents with children with FASD . Department education FAS-Edu official research report and schools video early years down load at. www.nofas.co.uk. was made in co operation of all UK support groups in conjunction with parents children and their schools, now a official SEN department of educational training module.
"Reach too teach" and Educational Success at www.fasaware.co.uk
Interactive Awareness and teacher training www.fasdoutreach.ca this is
by far the best from Ministry of Health and Education British Columbia Canada.

Lists of ALL UK Support groups see www.fasaware.co.uk.

fasparent · 11/09/2013 23:21

Lists of ALL UK Support groups see www.fasaware.co.uk.

Flip