Fetal alcohol spectrum disorder

[Jetta2018]

Hi I have been pointed here to speak with fasparent who maybe able to give some advice on fasd

Hi Jetta - I am sure fasparent will be along (others have also adopted with children that are on the spectrum - including Boston and possibly me!) but it would be helpful if you could clarify what you are asking information on or advice on.

I think it is a possibility for a lot of children within the care system. Pediatrician said it generally manifests in one or more of the following:

• facial features (small eyes or lips for example)

-developmental delay -hyperactivity (like adhd but not) That's a very simplistic explanation. What is it you are wanting to know about it?

Hi jetta - yes there are more of us around who parent children with FAS.

fasparent is around usually.

we all come at it from different angles as you may expect.

Is a difficult subject as all children are effected differently FAS FASD is a
Umbrella Term which involves many conditions some Complex .
But new research on brains ability due too growth and Placidity and a different understanding of parenting and Therapeutics'. may make a difference in outcome's.
Will PM you
Regards.

Regular poster here who has name changed.

I'm currently reading up about FASD as I'm wondering about the impact of alcohol on DD1. We know she was definitely exposed on an on-going basis. I've always put things down to attachment and neglect, but lately I've been wondering. The more I read, the more it fits.

My understanding is it's hard to get a diagnosis, particularly when you're talking FASD rather than FAS - she only has one of the three FAS characteristics.

Most conditions would fit FASD FAD , but may not be attributed too the condition, hence late diagnosis later due too children's natural development. To get a NHS Assessment child has too be over 6 and must 1st visit Genetic clinic too rule out other underlying conditions prior too assessment.
There are lots of early interventions and therapeutics which can be used
in the interim which would not harm any child with or without FASD and may be lesson or prevent secondary issues.

Which guidelines say that a child has to be over 6 to meet nhs tests fasparent?
2 of mine were were disgnosed aged 11 months and 13 months. Both seen by genetics teams, and having bloods etc.
I'm curious if your info is now out of date as your children are older? ....or if postcode lottery strikes again.
But either way the facts you give are simply not true UK wide. Though may be true in your small area of the globe.
Here there are plenty of toddlers tottering around already diagnosed in our support group 😧

Our 4 year old is currently being assessed for potential FASD.

Google NHS FASD Clinic UK for assessment criteria. and what they do.
Yes is kind of a post code lottery both my two were also diagnosed at
Genetic Clinic.

The surrey clinic is a very specialist clinic and one which will make a diagnosis where other specialists have failed to do so. They are able to diagnose asd and/or adhd if that is the actual diagnosis rather than FAS.
The fees are £6k....and getting funding is very very difficult. You cannot simply choose to be referred there if your health care provider can diagnose FAS by their own genetics team.
To get to age 6 and not be diagnosed now is actually very poor - and why this clinic exists - for the very complex cases where there are question marks around the diagnosis.
The age 6 kicks in because really genetics should be seeing and diagosing children in their own towns, not sending kids off to surrey from all over UK for 2 day assessments unless absolutely necessary. In 6 years you'd think SS and/or parents would be able to push for the diagnosis they need locally.
Very complex cases understandably need the help this clinic can offer and so an age cut off keeps the waiting list short (along with the price tag!).
The NHS itself outside of this clinic gives no age guidelines on 'testing' for FAS. Obviously the earlier the better so support can be offered.

Boston, what kind of support is there post-diagnosis? The stuff I'm reading talks about ways to parent, a lot of which sounds pretty familiar anyway, but what else is there that is helpful for the child?

Our pre-schooler has a service called portage which is a nhs service here for children for children with learning difficulties.
It kicks in around age 2, until term after they start state nursery, and is a fortnightly visit for learning therapy at home. It includes fun learning games, songs, puzzles etc...led by a child development worker. After 10 sessions we had a formal report which discussed development in areas of gross mobility, language, fine motor skills etc (off the top of my head).
Slt also come to the home weekly in 6 week blocks to work with dc, then have a break.
Dc was immediately referred to the early years programme which begins assessment for whether funding will be needed for a 11 at nursery/school, and whether the child will need a formal statement of their needs.
So - so far health and education have worked hand in hand to ensure that dc can tap into our local nursery at 3.5 with all the local kids. There has been a lot of therapy at home to try to get dc to an ok level to keep up with peers.
Dc was immediately referred from genetics for the necessary health screening (all fasd children must have yearly eye checks as the optic nerve can swell) and this was done with no bother.
Our placing authorithy is aware of the diagnosis and the implication for behaviour and is awaiting an assessment from them - so they on turn can fund theraplay or similar as needed.
I'm tapped into a fasd support group and i know i'm 'lucky' to have such early diagnosis. You do have to fight for a lot of support but it is out there.
We are also part of a local disability group which has been useful in stopping isolation and helping our children know we are all different, and lots of children has a disabilty but have fun, fulfilling lives.
Dc does receieve dla, and is also eligable for a blue badge if I ever find the time to post the forms off!
Hope that helps Girls ☺

Sorry typos - on phone!

Thanks, it really does.