Adopted children with FAS

(32 Posts)
Moirasue Mon 12-Apr-10 09:33:58

Hi I am new to mumsnet and am wondering if anyone else has experience of children with Foetal Alcohol Syndrome. I have looked at the categories in the special needs section and there is no reference to this condition.

Both my children have this syndrome and life is full of ups and downs on an hourly basis sometimes.

Would anyone like to share their experience?

adoptmama Sun 24-Mar-13 09:00:17

Happyasapig DD is also adopted from central Europe (though not Russia). She was slow - but still in the normal age range - for toilet training. She is almost consistently dry now for naps but not yet through the night (age 3.3) but getting there. Speech has been a major problem for DD and we have just started speech therapy which is looking very positive in terms of outcome. Our endocrinologist does think alcohol is a root issue for the speech, hearing, breathing difficulties as well as the cause of the epilepsy and growth hormone deficiency. My feeling is the earlier the diagnosis/intervention the better so if you are worried about her speech I would definitely look for some help or support. Good luck and feel free to pm. me if you'd like to compare/share stories smile

Minky66 Mon 25-Mar-13 09:47:29

Hi everyone,

just wanted to add myself to your list! I have two adopted children the youngest age 8 has FAE(as near to a definitive diagnosis as possible because I was not the drinker) and has epilepsy, speech and language difficulties., sensory processing difficutlies like proprioceptive, hypotonia and educational delays that have required a statement and transfer to special school in September and her older sister has a statement and is very distractible but has fared slightly better than her younger sibling.

lookingforbaubles Mon 25-Mar-13 17:01:57

another FAS adoptive parent here

dd3 came to me at 2yrs old and is 16 this year

its been an educational few years for me!

dd2 is her half sister and ticks a lot of of FAE boxes and is now 20, she was 7yr old when she arrived -for a 6 weeks stay

Moomoomie Mon 25-Mar-13 22:25:20

Goodness. A lot of adoptive parents here with children with FASD. We need to set up a support group. I'm sure there is a lot you can teach me.

adoptmama Tue 26-Mar-13 11:18:37

Great idea. I am only just beginning to get DDs various health issues linked now to probably alcohol exposure. Diagnosis of epilepsy was last year (February it began just after she turned 2) followed a few weeks later by the endo appointment finding the growth hormone deficiency. Speech delay was noticeable then but paed. decided to wait on that as so many other issues were being dealt with. Since then she has had a hearing test (glue ear, possible additional hearing problem too; surgery for tubes in two weeks) and a speech assessment 3 weeks ago. Just got results and she is about 1 year delayed, in bottom 5-10 percentile and starting speech therapy now. I would love a support group. Some of her speech problems are delay, some are developmental and some remain undiagnosed (probably dyspraxia of speech). We do not live in the UK. I dare not mention FAE to the school as I fear it would lead to her placement being withdrawn. May happen anyway if her problems become worse and she has significant education delays.... sigh. Yes a support group would be good.

lookingforbaubles Tue 26-Mar-13 16:33:26

we also ran the gauntlet of glue ear/grommets, lack of weight gain/growth, SALT labelled her as 'un-assessable' and i was told she would never speak

she is now talks non stop tho it took forever for words in sentences to be in the right order

she is quite a lovely dd and i have many grey hairs

Jrb14 Wed 11-Sep-13 18:52:36

There are quite a few support groups available. Have you seen that The FASD Trust are a guest campaign this week on Mumsnet? Check out their website at www.fasdtrust.co.uk

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