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New thread- Fetal Alcohol Spectrum Disorder

aquilegia July 15, 2019 16:33

Hi everyone 😀 I thought I would start a new thread on all things FASD. My boy has recently been diagnosed with alcohol related neurodevelopmental disorder (on the FASD spectrum), although we have suspected for some time. We are currently home educating but have applied for an EHCP for hopefully some bespoke provision to meet his needs.

When I searched on the old forums there was surprisingly little information available. So I thought I would start the conversation on something that really needs to be talked about more.

At some point i will add a list of FASD resources that I have found invaluable over the last year or so.

Scott C-R July 15, 2019 16:41
LouisaM July 17, 2019 07:50

Great idea. Thought Id say Hi. My son is 8 with a diagnosis of ARND. We currently Home Educate with a personal budget via his EHC so do ask if you've any questions at all. My son is thriving now that he is no longer in school. Loved the podcast Scott it was really informative and lovely to hear other parents speak about their children

aquilegia July 17, 2019 09:28

Hi Louise. What a coincidence our son's are the same age! How does your EHC work for you with a personal budget?

I am currently applying for an EHC after home educating for quite a while. I hope to find some alternative provision that may meet his needs and may need to go down the route of a bespoke EHC. Sadly our LA may not have suitable provision 😞.

How easy did you find getting an ARND diagnosis? Was it a surprise or did you suspect? We were lucky and finally got a very supportive paediatrician after suspecting for a while.

Happy to exchange ideas about what is working well. I am coming up with a FASD resource list that will post soon.

aquilegia July 17, 2019 13:35

Here is a list of FASD resources that I have found extremely useful. Hope these may be helpful to others! 😊

www.nofas-uk.org

www.fasdnetwork.org

www.canfasd.ca

redshoesrock.com

Facebook- FASD caregiver success group

YouTube- videos by Dr Raja Mukherjee, Nate Sheets (Oregon Behaviour Consultation), Diane Malbin.

Books- Fetal Alcohol Spectrum Disorder: Parenting a child with an invisible disability by Julia Brown

Understanding Fetal Alcohol Spectrum Disorder: A Guide to FASD by Maria Catterick and Liam Curran

I

LouisaM July 17, 2019 22:13

Hi Aquilegia,

I received my sons draft EHC at the same time as I decided that he shouldn't return to school. Initially reintergration was discussed and then I looked into special schools but the fit wasnt quite right. I then requested a personal budget and put in a budget plan, some things they agreed to and others they didnt! It helps pay for activities we wouldnt otherwise be able to access and Im aware we are very lucky to have one. Have you heard if the local authority have agreed to assess ? Let me know if can help in anyway

I had to pay privately for the ARND diagnosis - I suspected it due to the behaviour and the history. Sadly we've had no support since from the professional and are unable to access the local learning disabilities team as my son doesn't make their criteria.

Love NOFAS for information etc and also find the FASD Facebook page helpful too.

Safia July 18, 2019 10:45

Not connected to FASD - but I have an EHCP for my daughter who is 23 (EHCPs go up to 25) and is not able to access college or training for mental health reasons. She has a personal tutor come to the house for 7.5 hrs per week. We did not ask for anything other than this as by the time we updated her EHCP (she had a statement of SEN but had not been transferred onto EHCP as out of college and it did not occur to us to do so at that time) she was having therapy and had mental health services involved and was also attending a craft project one day a week. All these are things that could probably have been included. Also speech therapy which was on my list but we still haven't got around to arranging. Any activities which are educational or learning in nature could be incorporated. My grandson who is ASD and was in and out of various schools had an EHCP which paid for a home education placement (4 days a week 10-3) and tutoring at Kip McGrath for a couple of hours on the other day. It is possible - just think of what you want, who will provide it and cost it out. That gives you a starting point.

Edited 18/07/19
aquilegia July 18, 2019 11:14

Hi Louisa, it's such a shame you had to pay privately to get an FASD diagnosis. Yes as for eligibility for local services we too are finding we are falling between the cracks of the services. No specific FASD support, professionals with little understanding, same for local post adoption support, difficulty accessing disabled children's services, local special education provision a poor fit. I'll keep you posted as I have EH C planning meeting coming up and it will be very interesting to see what the LA suggest.

Hi safia, thanks for your input. I think a bespoke EHC is going to be the way to go. Luckily we have an extremely supportive Ed Psych. My son also needs occupational therapy and speech therapy. I even had a dream about EHC's last night! 😳 The whole process is pretty stressful!

Maybe we should start an education thread on EHC's/ home educating?

BeckyAUK July 19, 2019 10:17

That might be interesting. My son has never been to school so I've tended to assume I'd have no chance of getting him an EHCP as there'd be no way to prove a school couldn't meet his needs through normal provision as there's no school to make that statement, even if based on past experience. I don't want to steer the thread away from the very important topic of FASD (which we don't have a dx of) but maybe we could pick it up in the Home Education thread?

Safia July 19, 2019 13:20

Becky - you could book a telephone consultation with IPSEA - they are very helpful and lots of advice - they also emailed me some additional info - for the EHCP that is

Edited 19/07/19
BeckyAUK July 23, 2019 13:03

Thanks for the tip Safia - may just do that!

Safia July 26, 2019 16:23

I was sent an email from the Child Psychology Service with this talk advertised which some of you might be interested in:

22nd August – Foetal Alcohol Spectrum Disorder (FASD) – 9.30am – 11.30am

Price £30 per person for all of the two-hour workshops £80 per person for the EBM Workshop Location Lichfield How to book a place Call us on 01283 840051 Email us at: enquiries@thechildpsychologyservice.co.uk

aquilegia July 26, 2019 16:50

Hi safia, it's good to see training available. PAC UK had training in March this year with the wonderful Maria Catterick (FASD network UK) which was very good. Hope there will be something on FASD at the upcoming Adoption UK conference.

I have a question for AUK. With the opening of the FASD Hub in Scotland, would it be possible to link up one of the staff members to answer questions/ offer advice?

LouisaM July 27, 2019 07:59

Id love if we could link up with the FASD Scotland Hub too. Especially as we are so far south that we miss out on lots of training.

Becky; I believe it is possible although obviously trickier however happy to help if able to

HopefulAdopter August 14, 2019 22:06

Great to see so many resources and good advice on here.

I'd be very grateful if anyone could share their experiences of parenting a child with FASD. I'm in the process of considering potential matches and drugs and alcohol are common in-utero experience for all my potential matches - from birth to around a year old. I have done some research, listened to the podcast kindly posted and am preparing myself as best I can, as it seems likely that FASD is something I will need to help a child manage.

I understand difficulties often don't present until children are school age. I'd be very grateful if anyone feels able to share their experiences of FASD - at what age did they begin to suspect FASD? What kind of issues presented first and what did you to help manage them? How is life parenting a child with FASD? And of course any other info or advice that you think would help me think about/get prepared to potentially support a child with this is very much appreciated - many thanks.

aquilegia August 15, 2019 09:01

Hi hopefuladopter, congratulations on getting to this stage. Considering matches is exciting but also so much to weigh up and consider. FASD is a spectrum condition and kids can be affected in lots of ways along a continuum. Alcohol can also impact on physical development as well as brain development. Other drugs can play a part and there is some research coming out on cannabis exposure in utero may cause problems similar to FASD.

Parenting a child with a FASD. Where do I start. I think recognition of any pre-natal alcohol exposure is a good place to start. Having it clearly documented is very important for any diagnosis. Lots of kids are exposed to alcohol but it has not been documented. Lots of kids may get misdiagnosed with ADHD. Only 1 in 10 will have facial features of FASD. We recognised fairly quickly that there were additional issues after placement (we adopted a slightly older child).

For us, getting the alcohol exposure risk recognised was a struggle as it was not properly documented. One this was recognised, diagnosed and we started using the correct supports and strategies things got much easier. Typically kids with FASD are emotionally about half their chronological age. So we have a wonderful 8 year old who is emotionally 4-5. He has a 'spiky profile' and has strengths in some areas and difficulties in others. He has significant sensory processing issues, social communication challenges and struggles in noisy busy environments. He also gets tired very quickly as his brain has to work extra hard to do things we all take for granted. But he is a wonderful loving boy.He is brilliant with lego and puzzles, computers, loves animals. We have had to adapt family life significantly. We have applied for an EHCP and are looking for an education provision that can meet his needs. But we are doing well as a family and are hopeful for the future. ☺

Historically good support and diagnosis has been a postcode lottery. We have an excellent paediatrician with fasd awareness. Things are changing thankfully. There is increased recognition of the needs of those with FASD. Scotland has a care pathway in place for diagnosis and support. England is further behind but there are pockets of good practice and more professionals getting training.

In terms of the future, adults with FASD often need support. I have read stories of adults with FASD who have managed to go to university and then those that require very intensive support to function on a day to day basis. Take a look at resources online from Myles Himmelreich and RJ Formanek, two adults with FASD with blogs/ on YouTube. Have a look at a resource list I posted above.

I don't have any regrets. My boy is an amazing individual who still manages to smile through the challenges. Lots for you to consider. I know lots of families struggle and can only give my own experience. If there is anything else I can do to help please let me know!

Edited 15/08/19
Donatella August 15, 2019 10:27

Also think about why birth mums are self medicating with drugs, alcohol etc. It’s unlikely to be one thing in isolation - often if you dig deep enough into family genetics there’ll be undiagnosed autism, adhd etc. Which may well be underlying the drinking, domestic violence, chaos and dysfunction etc.

HopefulAdopter August 17, 2019 21:54

Thanks so much Aquilegia for all your really helpful info there, I'll definitely follow up on the resources you suggested. Thanks too Donatella, will keep those wider issues in mind as well.

Scott C-R September 9, 2019 10:30

Hi all,

As it is #FASDDay today, I thought I would share the FASD Hub links as an additional resource. Whilst the physical Hub is in Scotland, the resources are available for all - anywhere in the world - of course, some of it may include local services, but hopefully it will still be useful!

FASD Hub Scotland web page: https://www.adoptionuk.org/fasd-hub-scotland

FASD Hub Scotland resources: https://www.adoptionuk.org/Handlers/Download.ashx?IDMF=b7cbba7f-2496-4ebe-b194-7fad63aaa71a

You can also keep in touch with the hub on Twitter: https://twitter.com/FasdhubScotland or by email: fasdhub.scotland@adoptionuk.org.uk

Check out some of today's social media action by looking for #RedShoesRock or #WalkinourshoesFASD or #FASDAwareness

Scott

peartree September 10, 2019 00:26

I do think looking back both of our AC had considerable alcohol exposure along with other stuff. Neither have facial features particularly but I was very struck at a auk meet up and then going to visit therapeutic schools and homes how very similar lots of the children looked.

My AC weren’t even considered as having FAS and ‘meeting milestones’ etc which is all meaningless.

I don’t know really how to change this as I feel that there are far more adoptees with FAS than is recognised.

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