Waiting for referral re. poss asd what should I be doing now?

[redhappy]

Went to see health visitor today, thankfully ds was at his worst and she has referred us to a paediatrician for poss asd, with the words 'the waiting list is currently 6 months long'.

So, could anyone enlighten me what it is we are waiting for please? I'm guessing that we are waiting 6months to see paed, who will meet ds and decide for themself if if they want to see ds again to for further examination? or will they decide in that first visit is he will be assessed and then we join a waiting list for that?

Anyone else I can be getting onto in the meantime? Unfortunatly ds' behaviour meant I forgot to ask her to write down for me what she was going to do, but I know I agreed that it was worth checking 'for everything', but can't remember what that included! duh!

So will track down the hv again and ask her to put in writing who she has contacted and what she has said...and of course chase them up myself. Is there anything else I can be doing at all? Horrible to feel like I'm sitting on my hands waiting

Keep a diary. Self refer to Speech and Language Therapy as they can assess social communication and interaction and you don't need to wait for the Paed to refer to this service. Depends where you are in the country how long assessments will take and how they will be done.

Thanks, yes have got diary- A4 hardback, plan is to also stick photocopies of any correspondence in here and printouts of emails etc.

Totally forgot she is going to refer to salt too. I should probably give up and go to bednow really! It's been a long day. Have not seen a hv since he was 8 months (but he was doing so well! he was at 12 months at least for nearly everything then!).

He is 3.8 and reading through the notes in red book he was put at 18-24 months in developmental check today

Just want to do everything I can to help him now.

When SALT comes (probably shorter wait time) ask them to start speech therapy immediately. Do you have portage in your area? Can self refer there too. Do any childrens centres have SALT / portage drop in you can access?

Contact your local NAS branch - go along to meetings you don't need a dx and find out whats available locally

Consider applying for statement of special needs - has to be completed within 6 months if they agree to do one and so can speed up the dx process - see IPSEA.

Does child go to nursery? Find out / visit special schools / nurseries etc - some areas still have assessment nurseries. Also ask Local Authority Education Dept about funding criteria for SEN for 3-4 year olds. A nursery may be able to apply for some funding

Do you get DLA? Don't need a dx - look at Cerebra guide.

Look at MCHAT - screening tool for ASD - can help you write down "signs".

Thanks, not sure what portage is, I will look into that.
Children's centre have drop in salt on day he is at playschool, and I'm making his settling in a priority for the time being (routine and all that...)

We have a pre-IEP for him from his last nursery before we moved. This will (hopefully) be the first week he does his full 15 hours of playschool (weds, thurs, fri 9-2). Sounds like i need to approach them to confirm what they can do for him. When we went to look round they mentioned an area senco who would advise them so I obviously need to chase that up.

There is a school here with sn nursery sessions in the afternoon. It is currently full, there is waiting list for septmeber, just 8 spaces and referrral only. It is the designated session for our town, and the only specifically sn provision for early needs.

I have found some support groups in our area, but I feel a bit silly going, like he's not really 'that bad'. Sorry if that's offensive, don't mean it to be, more about being unsure of our position I suppose. How bad does it have to be before you need support? Just think might feel bit pathetic if I go to one of these groups and see families who are really struggling with severs sn, and ds happens to be having a good day.

I know how you feel. Daughter was referred to pead and child development team and we had to wait 6 months for that. They told us after many test she has complex social communication disorder ( poss asd), but well have to wait another 8 months for final diagnosis when we have to go back to them. In the meantime daughter has weekly speech and language therapy. I took her to sensory room as well after school at the local childrens centre to help her disensitise, and she enjoyed it. As for now we just have to wait and see what will happen next.

Spoke to hv again today- we have been referred to paed, who will do tests, to see if he/she wants to do further tests or refer straight to child development team.

Feel like I've got a bit more of a handle on it today. Rang the inclusion service at the council and planning to make contact with some local support groups.

What about early bird?? NAS for info