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Here are some suggested organisations that offer expert advice on SN.

why so isolated

(10 Posts)
jasdox Sun 12-Jul-09 23:21:26

My ds is currently undergoing dx`for ASD, i guess HFA. When you start reading around the subject, apart from being overwelmed by different theories and options, lack of understanding, myriad of cure claims, ABA etc. The energy in fighting the system to obtain support for your child. Then isolation as they grow older the increasing difference from NT peers. It can well, you can get a bit lost.

Yet the claim is 1:150, and somewhere else I read 1:94 (for boys), so where is everybody. By these numbers, that should be as often as one per road. So having been aware of my ds since 2y, now 3y8m we still have not meant anyone in a similar situation, except on the mn chat (sorry do not mean to sound rude, the support and similarities are absolutely fab, and would be v. lost without you all, do not post often - never been good a writing). Is there no groups/ activities or places to go to meet people. In Bristol, where are others?

WetAugust Sun 12-Jul-09 23:35:09

The NAS has some things in Bristol. There is a parents group that meets in South Glos during the day.

Have you had a look on the NAS site for your area.

My DS is HFA and we live in BS30. Not much for the older child /teenager in that area.

How old is your son?

troutpout Mon 13-Jul-09 00:01:58

I used to think this in the playground
The primary playground was such a lonely ,tough place (thank gawd he's left now)...and i used to think 'there must be others!'
People keep their head down in the playground don't they?

Errrm...I've met people on autism support courses. I've even met people who live locally who have appeared at the courses.I've made a good friend in this way....and ds has made good friends with her chidren too.

jemmm Mon 13-Jul-09 08:41:22

Everyone mentions Earlybird as a good initial route into meeting people in the same boat.

Funny there's a little boy who my eldest is friends with - and he's clearly got language issues, and often "drifts off", but his mother never mentions it, regardless of how much I mention younger DS's ASD.

And have you tried Social Services, Health Visitor, Carers Resource - these people can generally put you in touch with the groups. Might be worth trying your local SureStart Centre - if they haven't got anything, tell them that they should have.

Have you asked the professional who are assessing your DS - they're generally pretty informed.

By the way I know what you mean - our local CDC is apparently dx'ing a child a week as being on the spectrum - I often wonder where all these children and parents are too - they're not at any of the toddler groups I go to.

Widemouthfrog Mon 13-Jul-09 09:10:29

I'm in North Bristol (BS32 - Bradley Stoke), and I've met people locally throught the NAS S Glos branch. There is also a Bristol branch. If you google you can find their website - they have a range of summer activities organised. They meet once a month - there is a daytime meeting or an evening one.

I have also met other families through the Earlybird course.

Other families I know go to Hop Skip and Jump in Kingswood - have you heard of this? Its a play centre for kids with any type of disability. We have used it in the past. There is some great outdoor space in good weather. My DS likes the sensory room.

If you want anymore details just ask away. My DS is 6, but i have a 3 yr old currently going through the diagnostic procedure.

TotalChaos Mon 13-Jul-09 11:01:22

jemm and jasdox - I've wondered the same thing recently. Interesting what you say abut toddler group jemm - as recently I've found that 1 kid who used to go to my toddler group and 1 younger sibling of a kid at toddler group have speech/language problems - and a teacher let slip that a kid in my DS's class had the same SALT as DS. So I think there are lots of us out there, but it's hard to broach the topic in a toddler group setting! Somehow it's so much easier to touch base on the internet than in real life. When I finally got to do Hanen and group SALT I did obviously meet some parents with kids with similar issues but it never really went beyond the sessions for chit-chat. I wonder if maybe we end up feeling so bruised by it all that we become less outgoing?

I did try the local support group once, but they were a bit funny (in the sense of conspicuously tolerant of us) as DS didn't have a DX of ASD, so I didn't really feel comfortable about going back.

At a recent consultation by paeds into the joint clinic assessment process, I did suggest trying to set up some support group sessions via Surestart for parents of kids with language problems irrespective of diagnosis, not sure if anything will come of that though.

coppertop Mon 13-Jul-09 12:42:46

Sometimes they can be there without you realising. I always thought there were hardly any children locally with ASD. One day I went to an event organised for children on the spectrum and there was another family from the same school.

Then another mum who I knew from local toddler groups came over one day and said "X has told me that you have a child with autism. So do I!" It had just never come up before as both our toddlers were NT.

A couple of years ago I only knew of one family in the area with a child with autism. Now I can think of at least five, and that's not including the ones I've met from other parts of the city.

Niecie Mon 13-Jul-09 13:13:58

Sorry you are feeling isolated jasdox.

It is a very difficult thing to be going through and I know it would be nice to meet others in the same boat, but I think part of the problem is that at the toddler group stage there are a lot of children that aren't yet diagnosed, especially with HFA/AS which is less obvious than more severe ASDs

Even if they are going through the process of dx at the toddler stage, it usually takes so long that I am sure people don't mention it as there is nothing to tell until you have a dx and by then a lot of children have started school. Yet more don't get picked up until they start school.

I also think that you are less conspicuous than you feel and people may not even realise that there is anything wrong with your DS which is why it isn't broached.

Plus there is still a stigma to behavioural problems that people don't like to talk about. My DS1 has AS and very few people know that. He is quite mild so I don't have to raise it often and even if I did I would be very careful who I tell as even friends have been known to be quite rude about more severely affected children. It is lack of education on their part and I do try to tell them about it and change their perception but I still don't want them to know DS is on the spectrum too for fear that they stop treating him the same way as they have before. That probably makes me a bit of a wimp but there you go. I have to protect DS and he is at an age where children all like to be the same.

If you don't have a dx yet, you might find that the paed/clinical psychs will pass on information about local groups for you to join. That is what happened to us. If they don't, ask them. They should know of some groups that will help - sometimes the hospital even runs a session from parents of newly dxed children here so you if you can get onto something like that you might find it useful.

WetAugust Mon 13-Jul-09 21:51:28

I think there is something available at Grange Farm Warmley too?

saintlydamemrsturnip Tue 14-Jul-09 09:09:46

It's a condition that can be isolating though. I can't take ds1 anywhere really without help, certainly not somewhere where we would meet up with others and when ds2 and ds3 were little the last thing I wanted was to be around a bunch of NT children so we didn't go to that much stuff.

Bristol NAS is pretty active so a good place to meet others, and of course earlybird (but you need a dx to access that). Once you've found a couple of people then your network/friends start to expand pretty rapidly ime.

I met most people online first, then met up in RL. Have found that worked well.

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