Where to go from here? : Hi I'm looking for... - FASD Support

FASD Support

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Where to go from here?

Clabla profile image
6 Replies

Hi I'm looking for some help and advice please. We have a 10 year old son who we adopted when he was 4. We have always known that he has some social and cognitive challenges along with other processing problems. School have been great with him but he is labelled as a 'naughty child' who hurts others and does not follow instructions well, he tends to freeze when faced with pressure or difficult moments. He is good at maths but really struggles with English and is falling way below. In my ignorance, because he did not have physical features of fasd I dismissed it. His birth mother drank alcohol when pregnant. School have involved behaviour assessments in the past to address the hurting others behaviours but I feel that I want more supportive input now as this is his last year in primary. I am completely convinced that he has fasd. What are the best actions for us to take now? Should I go to the GP?

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Clabla profile image
Clabla
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6 Replies
Halifax profile image
Halifax

Try your local authority social services - there is an adoption support fund available for all looked after children adopted more than 3 years ago. They can refer you to a specialist therapy centre. Good luck

in reply to Halifax

This is a long winded process, I am going through at present. You have to go through social services who go through a history and through reports from school and specialists. They fill out a report for you to look at and can take a while for the corrections to be done. That's before they go to adoption support fund.

If you haven't been under a paediatrician I would start by asking to be referred to one from your own GP.

racheyhuk profile image
racheyhuk

Hello, I went to my gp last year and asked for a referral to a paediatrician. You can also ask school for an educational psychologist assessment so he can be assessed and loose the naughty label. The fasd do a book which you can get on Amazon called parenting a child with an invisible disability. It has a green octopus on the front, it was a great help to me.

Also see if there is a support group close to you as all health boards do things slightly differently.

I hope this helps x

dianakitten15 profile image
dianakitten15

Hi there,

Go to your GP and ask for a referral to a paediatrician. Take along to the paediatrician appt evidence of pre natal alcohol exposure eg. child's permanence report/childs LA files etc, also the behaviour assessments from school and ask for a referral to the Genetics Clinic (responsible for diagnosing FASD). At the genetics appt, as well as the evidence mentioned above, take along earlier photographs of your child (ie. if there are any subtle facial features they are more pronounced when the child is younger).

In the meantime, read a copy of the aforementioned book 'parenting a child with an invisible disability' for practical tips and support. Book is available from Amazon.

Also look on the FASD Trust Website and click on 'Support Groups' to see if there is one in your area.

Also, the choice of secondary school is crucial, as children with FASD struggle in large mainstream schools due to sensory overload. Discuss with your school SENCO and ask about an EHCP (Education, Health, Care Plan) for your child. This is the key document which formally identifies your child's needs and puts in place meaures to ensure those needs are met.

I hope this helps.

WildPoppies profile image
WildPoppies

Hi, all great suggestions so far.

Really sorry to hear your son is being labelled as 'naughty'. Unfortunately, some school staff tend to put everything down to 'won't do' rather than 'can't do'. It sounds as though your son is lashing out at other children because he's overwhelmed / anxious / exhausted. Children with neurological disorders tend to become exhausted much sooner than other children as their brains are working so much harder to understand the world around them.

The only thing I would add to the suggestions so far, is to see if the current school and future secondary school would consider raising their staff awareness of FASD. The FASD Trust runs training sessions for teaching staff. We found in the past that, despite what other professionals might say, unless the teaching staff are "fasd aware" then it can be really tricky to get the school to see behaviour as neurological rather than a child behaving badly through choice, etc. So, if it seems as though the senco in each/either school is willing to increase awareness of fasd, then I'd definitely push for this to happen.

Definitely put the wheels in motion to get assessment for FASD - and other neurodevelopmental disorders. Most likely you'll find your son has other diagnoses not just fasd. It's common for fasd children to have adhd, autism, etc as well as fasd.

Good luck with this. You're doing all that you can to help him and now it's about getting another layer of awareness in place. It can be lonely and isolating for us parents, so definitely find an FASD support group if you can. Alternatively approach your local Carer's Centre or Parent/Carers forum as they are brilliant about supporting you.

Joygirl profile image
Joygirl

The FASD Trust also has a whole new education project - take a look at fasdtrust.co.uk

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