Where to turn?

I am really hoping someone can help point us in the right direction. Hubby and I have 5 children in total all of them ours biologically except the 2 eldest boys who are my hubbys but the boys mum died when they were very little. Our two boys are almost 14 and 12 and were both diagnosed roughly 5 1/2 years ago after much fighting from us. We were told son no1 has full FASD and son no2 has ARND but except for giving us a few web addresses we were sent on our way with nothing. Over the last 18months or so both of their behaviours have gotten worse and are displaying very worrying, albeit different behaviours. We have been working with their school in trying to manage these at school however getting a lot of the teachers to even accept that the boys have a condition as they don't really know or understand it is very hard and we are having to supply them with the information as none of their training is about FASD. However when we recently tried getting a referral back to the Paediatrician in the hopes of getting a more detailed diagnosis and therefore knowing where we can turn for help we were told by the local Paediatric team that they do not deal with anyone over the age of 12, which automatically rules out son no1 and that as son no2 is almost 12 they won't deal with him either. We were then told to ask for a referral to CAMH only to be told that they won't look at son no2 UNTIL he's 12!!!! Then yesterday we were informed that there is a 50 week wait to access CAMH, we cannot wait a year for help because by that point both boys are likely to be in very serious trouble with either the school or police. Can anyone offer any advice as to where we can turn now.

Many thanks

5 Replies

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  • Hi,

    Speak to your GP and formally (in writing) request to change to another CAMHS Team, as the waiting period is clearly unacceptable.

    Hope this helps.

  • Have you got a copy of this book? fasdtrust.co.uk/news_item.p...

    Have the school accessed any training on FASD?

    Part of the problem at this age is that they are 12 and 14 but probably emotionally and socially only 7 and 9!

    Definitely would go back to GP. Paediatrics are for children up to 18. Try asking about a referral to paediatric neuro-psychology.

    Speak to SENCo at school and ask about Educational Psychology seeing them.

    Do the boys understand their condition? FASD Trust have a great booklet All About Me, send an email to admin@fasdtrust.co.uk for details.

    Really hard at this age as world wants them to be grown up and they are still babies and it gets so confusing for them. (one of mine is 15).

  • Hi thank you for your reply. I have the book and its become a bible to me. We have tried to offer the school access to the leader of our support group to speak to the staff but as yet 4months later they still haven't contacted him. Some of the teachers have embraced the info that we have supplied others have either ignored it or not bothered reading it. At school it is def hardest on the 12yr old as he is much more effected emotionally and socially, the 14 yro is much better at mimicking and therefore doesn't stick out so much. I am waiting to hear back from the schools seance regarding an appointment but sometimes it feels like I'm pushing a boulder up a mountain. Both boys are aware of their condition and we have the booklet for them as well as the I am Sam app but yes you are right its very confusing for them and the world doesn't seem to want to understand.

    I will make sure i request the education psychologist once i get in to see the school senco. Thank you for your advice.

  • Personally, if the SENCO is "ignoring" you, I would ring up school and say you must see the Head, as the SENCO has been unable to meet with you and the issue is now urgent, you MIGHT suddenly find the SENCO discovers they have a free slot....!!!!

  • Im close to doing that especially as we received a letter today from CAMH refusing to see us as they don't deem either of my boys problems as serious enough for them. Im devastated i feel like I'm drowning and overtime i think I've found a life raft to save me they end up pushing me under :-(

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