FOR NEWBIES TO THE SN WORLD

[misscutandstick]

I came across a website the other day (early years support) and they have some great material to help mums and dads new to 'special needs' with all its new jargon and procedures. It explains in easy to understand language who people are, what they do, who you can get in touch with, what funding you are entitled to, a fantastic 'developement journal' and a 'family file' to keep letters/appointments and scraps of paper in. And loads of other very useful info. ALL FOR FREE! Its lovely quality stuff, and it arrives quickly. I have found it immensly helpful.

heres the website

Wow - that's really useful. Yet another thing I wish I'd known about a few years ago! That really is the kind of site they should direct you to on diagnosis. I'm gonna check it out anyway because I am 99% sure I did everything completely arse-backwards.

I am a bit ambivalent - as we shouldn't be "coming across this stuff" - the health pros/HVs/nurseries etc we are dealing with should be giving us this and/or having copies of the relevant booklets to give us. I feel this concept of early support will only be worth its salt when everyone seeing say a community paed or getting referrals via HV are made aware of this. or even better, when people are offered keyworker support as a matter of routine.

We were handed a blue 'suitcase' full of information binders after ds was dx - about 2yrs ago. I found the information to be fairly high-level TBH, there is much more detailed information elsewhere (books, other websites).

It's OK if you're new to SN and don't know anything and need help.

yes, it comes in the suitcase still.

manny - thats kind of who its aimed at, i think. i think its a good starting point.

TC - i agree that this stuff should be given out routinely, it certainly looks like it was designed to be. I do wonder how many of these 'packs' are still sat in cupboards untouched because nobody knows A)that they are there to be handed out, and B)to ask for one.

Hope its useful to someone - i certainly find the majority useful - but i myself have only just arrived in this 'world'.

TC agree about 'shouldn't be coming across this stuff'. I didn't get any info until ds started at special school and I think there would be less chance of folks getting suckered into fake treatments and false hopes if they were given quality easy to understand info in the first instance.

Thanks for the link I've just ordered some stuff, its helpful as I'm beginning to think about schools.

These packs should be available in SureStart centres?

i found a booklet about early support in a course room in a surestart centre, not any of the other info.

thanks for the link.

They run courses too, where you can meet other parents, get information, and learn about SN world. Unfortunately, nobody seems to be getting places on these fabulous courses yet, but maybe in the future...

That's a great sit and I was fortunate enough to have been given that pack the first time I met DS1's specialist health visitor. As usual, I see it appears to be quite a postcode lottery :/

Thanks for the link - hadn't come across that site before - some very useful info.

I was excited about this initially but on closer inspection it seems to be aimed at parents of disabled children - rather than all those with special needs

Do those of you that have this "family file" thingy think it would be useful/helpful for parents of children with conditions such as aspergers etc

Hope that makes sense - I am sooooo utterly new to being a parent of a child who doesnt quite fit in!

I haven't got the file yet but I ordered some things from them, if you follow the link through it gives you the option to select which publications you want. My dd has medical special needs so I tried to pick the ones which are relevant to us but I think some of them would be useful whatevr your childs specail need is.

Yurtgirl, DD doesn't have an AS diagnosis but I'm pretty sure there would be useful information in there you could use. I've definitely seen stuff about AS disorders. At our child development centre in London you seem to be handed a pack if you're using 2 or more of the services eg SALT and OT.

YURTGIRL:

I do describe my AS boys as disabled...and having had a quick look at the stuff on that website...think it would have been brilliant had it been around 7 years ago!

Also...think it would be great to give to close family.

I'm going to try and get the 'blue suitcase' for myself and my mum. I'm also going to recommend this to our paed- as she relies on me to find her helpful stuff (Tee Hee!!!! Well, she did once ask me for details of the Autism club my boys went to in holidays...as she'd never heard of it )

mum23 - on a similar note, my HV wanted me to let her know what exactly happened at a joint clinic appointment, as she wasn't sure!!!!

yes TC...Parents REALLY are the EXPERTS!!!
(I saw my old health visitor 'behind the counter' at the doctors the other day...and it was like seeing an old friend! She hasn't worked with us for approx 3 years- but she started helping me when ds1 was 2...so that's 12 years+ ago!!!

am i right to think that HV can support families of disabled children till 18yrs- as opposed to how they usually stop when child starts school???
Reason is, i could do with her coming out during the summer hols to 'witness' ds3's behaviour!!!!

Ooooh thanks for your wisdom about that mum23asd - I ordered a load of stuff from NAS last night, but will try and get a suitcase now as well!

Re the health visitor thing - I dont think so but Im not sure!

The general voice of wisdom now seems to be that my ds (who was coping with school and home etc fine'n'dandy until 2 months ago) will now need to be statemented. Shocked and astonished dont go far enough to sum up my surprise about that X3!

yes yurt...in the early days after diagnosis etc...you feel like you are in a tornado..or a snowball gathering momentum as it rolls down the hill!!!!

We got this about 2 years ago, but tbh haven't used it much.
At the time the info was designed specifically for the 0-3 age group, which is why it seems to be mainly aimed at parents of children whose disability is obvious from very early, ie not necessarily ideal for ASD etc...
unless they have changed it!
the most useful bit for 0-3 was the advice to get one key professional to co-ordinate all the others on your behalf. they were under no obligation to do this post 3 though!
it was started as a trial i believe a few years ago, didn't realise it was still going...
you used to get a free bag as well - which dd1 still uses for her swimming stuff - actually, THAT was the bit that was most useful for us! lol!
it is good to steer newbies with v small children...