FASD

[Bearfamily1010]

Hi there,

I’ve tried this over in the SEN forum but not getting any responses, so hoping you guys might be able to offer advice.

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!

It should be a needs-led process so you need to push back at that. If you post on the SN section on here you will be able to get a lot of good advice.

Assessment of needs for the ASF is not dependent on having any diagnosis, I thought that if you requested one then they had to do it, so worth pushing them on that. In my experience it has been worth having an idea of what you want from the ASF - we have had sensory integration therapy which has been amazing and I wish we had accessed earlier (we started it when DS was 4). Happy to help with ideas/share my experiences more if it is helpful.

Thanks for the replies. I think we feel a bit stuck because I don’t know what is out there, so I don’t know what will help. I can describe DS difficulties, but I don’t know what would help him really. We currently have portage which was suggested by nursery, but it makes no difference at all. DS understanding is really poor for a child his age, he’s like having a 12 month old baby that can run.

He is starting to lash out with frustration, hitting and kicking us (but I don’t think he actually understands this) and also hurting himself. We have community paediatrics involved, but because of COVID they won’t see us for another 6 months now after the initial meeting we had. By then he will be almost 2 and a half and I just feel like time is going by with no help or support for him :( I really feel like I’m failing him but I don’t know what I can do to help him.

They are obligated to do an assessment of needs but not act upon those needs. It’s a crazy system

A good place for advice on pushing this would either be adoption U.K. or the NATP.

Thank you all so much for your help I’ll have a look at those organisations

I might be able to help with getting an assessment. No diagnosis meaning no assessment is completely wrong.

@Eurovision

I might be able to help with getting an assessment. No diagnosis meaning no assessment is completely wrong.

This was our thoughts too - everything we have read says you don’t need to wait, but our LA just seems to be making up their own rules!

Go higher in local authority. Find out who the managers are and copy them into emails.

Within your LA, there should be an arms length individual/organisation who can support you in your request for an assessment. It is definitely needs led, as with very young children it is sometimes difficult to make a diagnosis until they are a bit older. If you look on their Family Information Service's webpage, it should have their details there. You are entitled to request an assessment - it's helpful to have as much information as possible (eg from your health visitor) when you do this.

Also if you son is in nursery, their SENCO should help with this. I work for an LA and all of our nurseries (including private settings) are attached to an advisory teacher who works for the LA. Even if your LA doesn't have this system, there will be still be someone that the SENCO can contact.