Foetal alcohol syndrome

[Bearfamily1010]

Hi there,

I am looking for some advice or support, as I’m feeling very overwhelmed and lost trying to helped my adopted DS.

He’s lived with us since birth, DS is now 22 months old and to me, clearly very different to children his own age. He is also very different to our older adopted DS as he was at that age.

We’ve now got a new health visitor as our DS are now officially adopted, so we have a “normal” health visitor instead of a looked after children’s one. She referred us to our LA for support when we told her that we’re starting to struggle with some elements of his behaviour/understanding. A big concern is once he is able to climb out of his cot I don’t know how I will keep him safe. He regularly wakes through the night but does not always alert people. I would have to take everything from his room, or sleep with him or move his bed to our room. He is being investigated for genetic conditions, ASD and possible foetal alcohol.

The LA got in touch to say they won’t be doing an assessment of needs as we have no diagnosis yet. I had read that this should be a needs-led process, and nothing to do with diagnosis. I feel like I’ve read so many things and spoke to so many professionals and I don’t know what is the right thing to do anymore.

Does anyone have any help or experience to offer? Sorry for the long ramble... I feel like I’m drowning quite a bit, not just in this, but lots of areas!

As you will gather, this part of the SN board is very quiet. Have a go at reposting in the SN chat.

Your LA are not behaving well; have a look at IPSEA to force their hand. An assessment of need is supposed to be based on suspicion of SEN but it is common for the LAs to make up their own rules. When challenged, they usually back down. Sometimes, you have to take them all the way to Tribunal. Is there anyone in Post-Adoption who can lean for you?

For communication, have you come across PECS, Makaton or Hanen? Go visual, reduce your own language and build from whatever interests your little one. Get rid of the cot and make him safe - use an alarm; move him in with you - anything that works. There are even special beds that might help. There are charities like Family Fund that you can apply to.

For FAS, there are PPs who know a lot more than me. If you think it is ASD, ask me anything. It is overwhelming, but you are doing the right things - talking to everyone, professionals and here. What does your instinct say? Language delay can run in families; as does autism.

@Catandchicken

As you will gather, this part of the SN board is very quiet. Have a go at reposting in the SN chat.

Your LA are not behaving well; have a look at IPSEA to force their hand. An assessment of need is supposed to be based on suspicion of SEN but it is common for the LAs to make up their own rules. When challenged, they usually back down. Sometimes, you have to take them all the way to Tribunal. Is there anyone in Post-Adoption who can lean for you?

For communication, have you come across PECS, Makaton or Hanen? Go visual, reduce your own language and build from whatever interests your little one. Get rid of the cot and make him safe - use an alarm; move him in with you - anything that works. There are even special beds that might help. There are charities like Family Fund that you can apply to.

For FAS, there are PPs who know a lot more than me. If you think it is ASD, ask me anything. It is overwhelming, but you are doing the right things - talking to everyone, professionals and here. What does your instinct say? Language delay can run in families; as does autism.

Thanks for your reply I really appreciate it.

We don’t have a post adoption person allocated just yet.. the placing LA have not been great so nothing has gone as it should have. We have asked our HV to challenge this for us but haven’t heard anything yet. It feels like they’re trying to shrug us off.

We have used makaton with our oldest, but the most difficult thing with our youngest is he doesn’t look at or pay much attention to you. So he doesn’t see what you’re doing or associate it with anything.

There is a history of learning difficulty in his family, not autism specifically that I’m aware of. He does have facial features consistent with FAS, it’s just hard to pull apart what “category” he fits into best if that’s makes sense? The only thing I’m certain of is that there is something that isn’t right, significantly so. I hope that makes sense

Check the letter your LA sent - it triggers a certain amount of time for you to challenge their decision. The letter should give you those details. Act quickly - you can ask for mediation. Sometimes a pointless exercise but it might give you a name/face/point of contact in the LA. Just remember - mediation is not legally binding but it does give you longer to appeal your LA’s decision.

Are you in touch with a FAS group? It can’t hurt.

Trust yourself - hold onto the fact that knowledge is power; diagnosis can open up some help & your LO deserves all the help he needs.
Try & make sure you look after yourself, too.

@Catandchicken

Check the letter your LA sent - it triggers a certain amount of time for you to challenge their decision. The letter should give you those details. Act quickly - you can ask for mediation. Sometimes a pointless exercise but it might give you a name/face/point of contact in the LA. Just remember - mediation is not legally binding but it does give you longer to appeal your LA’s decision. Are you in touch with a FAS group? It can’t hurt. Trust yourself - hold onto the fact that knowledge is power; diagnosis can open up some help & your LO deserves all the help he needs. Try & make sure you look after yourself, too.

Are they supposed to send us a letter? They just told our health visitor they weren’t going to assess us as we have no diagnosis. We aren’t at the moment, I was unsure about it as we don’t have a diagnosis and DS is being investigated for so many different things - do you think it would still be ok to connect with a group?

Of course it is. As parents with kids who are diverse we need each other.

Will your HV put this in writing? Time to use everyone who is investigating your DS - one of them will know your next step. Does he need therapy? An EHCP? Is your GP any good? Do you have a child development centre? What has the adoption board suggested? Do you have a paediatrician? Is there anyone involved that you instinctively trust?

Remember they may be experts but you know your DS better than anyone. What one thing do you want for him now? Use that as your focus for mapping the way through.
Thank goodness he has you.