Two questions for ASD mum's

[raffle]

Ok, sort of new to the ASD world and the NHS so, my GP has refused to prescribe omega 3 for PJ, is this usual? Don't want to cause a fight if actually it's common practice to refuse to prescribe?

And secondly, what sources of support were you able to access in the first few months post dx? We have been told it'll be approx 8 months until we can get on an earlybirds course and it'll be 6 months plus for our first appointment with the Autism specific nurse, I feel we are being left to muddle through without specific ASD advice. We do see a Portage worker and SALT but no ASD specialist. Is this normal?

Thank you ladies

Well the specialist that we have been told about it the Autism Specific nurse, but apparently she sees children as young as two and right up to 18 and she's the only one for the entire county. I never knew provision is so bad. :(

Yes, this is normal. Yes, this is rubbish. No, you should not accept it.
(except for the omega 3 thing, no GP anywhere will prescribe that)

How old is your ds?

raffle, phone the NAS and ask to speak to the Earlybird person. Ask if there are any other courses taking place locally (or even in a different county/borough) that has spaces now.

Buy Hanen 'More than Words' book.

Thanks Starlight, I'll give NAS a bell and see what's avaliable. Will also look for the book.

Thanks for info re GP and omega, saved me going bananas and looking like a tit for nothing!

Sorry, he's 2 and 7 months. Got dx at 2 and 4 months.

Would you mind saying where abouts in the country you are?

I cannot recommend this person more highly for navigating your way through the early days.

I've never asked for a prescription of Omega 3. We just buy it for DS1. It doesn't make a jot of difference to his ASD or ADHD, but his eczema has been a lot better since taking it.

Can't answer about the omega 3, but DS1 was diagnosed in June last year and we would have had a place on the Earlybird course in January (we turned it down in the end). We already had Portage in place, but this was stopped when his nursery sessions went up to 5 mornings a week in September. Our portage worker has still been a lifeline by email/phone though. No contact from any autism outreach service. SALT has been useless. At the diagnosis, we were given a pack of contact details and basically left to get in touch with people if we wanted to. I think things are getting worse if anything because services are being cut all over the place. Our portage service is looking at redundancies at the moment and I know staff aren't being replaced when they leave. We really want to go on the earlybird plus course as its more applicable to DS1 but there is now only one person in our area who has had the training to run it, but they don't know whether there is any funding to run it.

Thanks for replies, we are in Norfolk. SALT has been really helpful and has tried to get us a turn with the Autism Nurse but it's a 6 month wait. She said if PJ was more challenging it would be sooner :(

She also recommended a book called "1,2,3" or something like that (she's posting me the info). Anyone heard of it?

Omega 3 is something we buy over the counter in boots, with it being a supplement rather than a medicine I would doubt you would get it on prescription.

Hi Raffle, not sure where in Norflk youa re but Suffolk NAS hold some of their courses in Lowestoft, I don't know about the early bird but I did the HELP one there. I didn't have to wait long but it may just be a case of timing as I think they only run two or three times each year.
NAS also offer a home visit initialy but not sure if this is available to pre-school age, I think it may be 5yrs plus?

We had ot, psych etc in place pre dx as our ds2 has been in the system since birth (very prem) so we didn't have to wait, can you choose to go to Ipswich as IME their wait times are not too bad.
I know our GP offers us Norfolk & Norwich, James Padgett or Ipswich!

Omiega 3, i have given it to the dd's (on and off), my friends boy was perscribed it for ADHD/ASD but this was years ago (not sure if they still perscribe it), we didn't see a difference in taking it.

We get OT for dd2 but not dd1 (took us 2 years after dx though), dd2 was referred to a sn nursery before dx but we didnt really get any extra advice after dx. we did do the early bird course after dd1 was dx'd other than that we have had no extra support/advice with dd1. Oh, dd2 has been seeing SALT sinse dx but only at school and very rarely. We also had prtage come once a week for dd2 until she started school.

we did HELP course, (is for over 5yrs, but they took us when ds was 4.5) as Early Bird does not run in our area. there was lots about school stuff, and older kids, but there was some definitely useful stuff. We had by far the youngest dc on the course, and most of the others were aspergers/HFA, which ds is not.

portage have been brilliant, and we have made loads of friends with useful info through SN group (parents). There is also an NAS affiliated parent/carers support group in my area too, which has been good.

It has been a bit 'find out for yourself' though.

(Have to say SNMN, has been soooooo useful too, )

my son only reciently dx at 10 although he is moderate and now in a special school as spent years not getting on at all well in ms but we have now after 8 years demanding had 2 salt appointments and still nothing else (which is probably why hes ended up in ss and not ms with a asd unit) typical nhs and lea im affraid

123 Magic?

That's the one Starlight, I'm borrowing it from my SALT. Any good?

dunno

Probably a good start. I understand it is behavioural based.

Have you checked out my link?

Certainly did, looks interesting, is she expensive?

She wasn't for me, but I don't know her charges now. I do know that her principles are higher than her fees though.

She believes that early intervention should be available to all asap, and does a lot of promotion and charity work in the area and she is generous with her phone time. She also believes strongly in empowering parents.