Fasd testing decline can anyone offer advice please?

[ojzj2012]

Hello,

I need advice on how to get my son tested for FASD. I apologise for the witter in advance.

Here's the history:

I am his legal guardian so don't get any adoption funding (I have so many issues regarding the lack of support and services offered to SGO families versus adopted/fostered families but that's another story)

He was removed at birth from his BM by social services due to her heavy drinking and substance abuse amongst other things. This is documented by social services and midwives etc and I have a pre birth assessment that I gave to his paediatrician as she was reluctant to put him forward for testing as he "doesn't display facial features"

I have argued with her that facial features are a small part of FASD as it depends when the alcohol was drunk. Unfortunately it was upto 170units per week documented so probably more throughout the pregnancy so he got lucky there although his eyes have the folds its just his very full mouth that distract from the facial features. His head is also quite misshapen.

He is now three and a half and a wonderful little boy that's very happy with lots of character.

However, he displays a lot of FASD characteristics, I even gave the chart someone printed off here with the tick list and descriptions.

She eventually referred him to surrey testing with a very lame letter that I tackled her about and they have sent back a decline. I don't know what to do from here as I have not managed to get hold of anybody to appeal this.

I am aware three is quite young for testing. However, early intervention is best and I want to get the ball rolling as I don't want him going through years of struggling like so many of the kids do because their parents weren't advised of the history.

Any advice would be appreciated.

Many thanks 😊

[WildPoppies]

Hi

One reason that the referral has been rejected is likely to be your son's age - the Surrey clinic stipulates that children are at least 6 years old before they will see them for assessment.

See this link:

fasdclinic.com/referrals

If you browse through the video links on the FASD clinic website, you'll find a video where Dr Mukherjee explains why the children need to be at least 6 years old.

It is frustrating, and I can totally empathise with your frustration in needing to wait. But, meanwhile, there are lots of strategies you can use to help support your son. Clearly from the pre-natal evidence there is a high chance that he has effects of alcohol exposure, so there's no harm in putting strategies into place. There are great suggestions on the NOFAS website, in their booklet called "Strategies not Solutions".

Meanwhile, keep chipping away at the health professionals and keep raising issues with them so that there's a good bank of evidence in the paediatricians file about your sons symptoms. Keep talking with your GP about your sons symptoms too.

You can keep asking for other interventions such as OT, speech and language, physio, etc.

If your son is in a Nursery, have regular meetings with the SENCO, drawing her attention to symptoms that you're aware of, as most Education settings won't notice the less obvious symptoms of FASD as there just isn't enough awareness in Education as yet.

And find an FASD Trust support group near you - it will help you loads!

Good luck

[ojzj2012 in reply to WildPoppies]

Hi,

Thanks for your reply. I am lucky he has had SALT in place for over a year which has got him from non verbal or just grunts to speaking in sentences although still delayed and only I can understand a majority of his speech and even I still struggle sometimes. He has already had a genetics test to rule out other causes, his paediatric reports state significant s&l/ global delay, behavioural and severe hyperactivity and attention problems. I have spoken to his paediatrician today who agrees his issues stem from prenatal alcohol exposure but cannot diagnosis him herself.

He has a good SENCO in nursery who has got a LIFT? assessor coming in to see what needs putting into place. His SENCO has said they can't get a statement(cant remember what it's now called) in place as currently will be going to a mainstream primary, he feels Z will be fine in reception and the staff will cope there but his problems will come to light and they may hit problems in the first year of learning.

So I am trying to get as much into place as possible.

Thankyou for the websites for strategies for dealing with fasd specific needs.

There used to be a group locally that met up four times a year apparently but they no longer do it in my area.

[dianakitten15]

Hi,

As your son has clear Special Education Needs (SEN)already identified, (ie this is something they are agreed on) then I think you should consider a Special Education Needs School for your child. A EHCP (Educational Health Care Plan ie previously called a 'Statement') needs to be completed in order to attend a Special School. If he goes to a mainstream school he may well struggle and then it gets more difficult to move him. As stated above, FAS children not usually diagnosed earlier than 6 yrs, but as damage is done prenatally it follows that interventions should start as soon as possible. Confirmation of alcohol abuse in pregnancy is the diagnosis (isn't it?) nevertheless we have all struggled for a FAS diagnosis and this results in wasted years for the child, who should have had interventions sooner. So i think that focusing on the SEN of the child whilst pursing the diagnosis at the same time results in the best outcomes for the child. In order for the EHCP process to start you will need to speak to the school SENCO.

I hope this helps.

[ojzj2012 in reply to dianakitten15]

Hi, thankyou for the reply, sorry it took so long to get back to you.

His senco worker has said he doesn't meet special needs school as not in the top 10% of sen sp wont be able to go but also told me when applying that z will need to go to a school large enough for resources to cope with him, I intended to put in a small school so he could cope with small classes etc. He backed his school theory up with a small school not coping with him him ending up in a sen school. And i will go back to gp with his report from ss re confirmed alcohol abuse. Thanks again

[dianakitten15 in reply to ojzj2012]

HI,

Yes, you are absolutely right to keep pursuing what you know is best for your child. Unfortunately, as above, and at present, you may well find that you get a mixture of responses from all the professionals involved with your child, who are not as up to date with FAS as you are. Keep things simple, keep fighting for what you know your child needs, you are his parent, you are the expert. The APPG (Parliamentary Group) on FAS has written their intial report on FAS, download this (from FASD Trust Website). Contains a succinct overview of FAS.

Hope this helps.

[FamilySupport]

Hi, first of all why can't the local paediatrician diagnose themselves? There is absolutely nothing stopping them. Secondly, a child can be diagnosed with FASD from birth, the age of 6 set by the Surrey Clinic is there because they do full cognitive assessments which are not validated by the medical community until the child is 6 and as we did not want any doubt about the validity of its work, a medical / political decision of setting the age of 6 was made.

Thirdly, you can go back to your GP if you wish and ask to see a different paediatrician.

Fourthly, SENCO is talking rubbish! dianakitten in her reply is correct you need an EHCP. Who is your local authority? Pick up the phone, ring up the Town hall / County Hall and ask for the special educational needs team. Tell them which nursery your child is in and which school they are currently destined to go to and ask who is the Named SEN Officer for that school. Talk to them about the fact you have a child with significant disabilities and you need an EHCP so how do you apply and where is the form. You fill in part of the form and get school to fill in the other side, and send in all the evidence you have from your Paediatrician reports (sufficient evidence themselves) and SaLT and absolutely anyone else who has assisted. Take a look at fasdineducation.co.uk.

On the finance front, have you applied yet for DLA (disability living allowance)? Now he is 3 you should get the full mobility side of it as well. Go to DWP.gov.uk and complete it on line.

Have you got a copy of Julia and Dr Mary Mather's book yet? You can order that from Amazon - and it is a British Parenting Book. amazon.co.uk/Foetal-Alcohol...

If you drop us a line directly at [e-mail] we can direct you to your nearest support group.

And, finally, if you are on Facebook - why not join the group there for additional support - it is Friends of the FASD Trust and it is a closed group.

[ojzj2012 in reply to FamilySupport]

Hi, thankyou for your detailed reply. It will be printed and shown to the SENCO worker and paediatrician. I think I will go back to the Dr with his report as I said to dianakitten, as your right and this is why I posted , you can get children with confirmed diagnosis of FASD from babies.

His SENCO worker has said again that he needs to get a EHCP at school as if he gets one at nursery its for only a nursery setting (I suspect he may be talking poop on that one as I thought they lasted till age 25)

As again I said to dianakitten, his SENCO has said both that he isn't in the 10% to qualify for an SEN school but to get a school that is large enough to cope with his needs otherwise they may not be able to cope with him and he will end up in a SEN school??

I am going to arm myself up and tackle the council, thanks for the advice and link.

Although if he get my first choice of school I spoke to the SENCO worker there and she does seem pretty clued up about FASD and actually sat there and said this will be in place this will happen and reassured me over the little facts ie he will be in a locked secure building supervision the whole time with access to a quite room and field (he runs off and randomly with no sense of danger)

I have got the book thanks.

Can I ask regarding DLA I am in receipt of it now as I didn't think I qualified until advised by salt to apply, it took a long time to get and only based on paediatric reports, he can walk, although he has sensory issues and runs off constantly I take his pushchair out with me to manage his behaviour in town etc. I rang the dla a few weeks back regarding mobility as I had another day of me in tears with his behaviour in public and the oh so helpful judgement and blatant comments from strangers. The chap on the phone advised me I would have to go through the whole process of claiming again from scratch and could lose my initial award and implied I most likely would lose it, is this so?

Must join FB I feel I am

missing out on so much

Will e mail you re support groups, thank you so much for your help.

[Joygirl]

Hi you can apply to your own local district or county council and ask them for a blue badge explaining that your child has significant learning difficulties and they can walk but have no idea of danger and frequent melt downs making them a danger to themselves and others. You won't get more money but it helps practically with free parking and less restrictions.