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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

Where do you get your support from.................

19 replies

anniebear · 26/02/2006 11:52

other than here

I had my first visit from our new SW about 4 weeks ago

I had asked for one about 15 months ago as Toy Library and Portage had come to an end and they were both a good support to me, they listened to all my worries and moans

Those of you who know me know there are a lot !!!

I had a nice vision of the SW calling in for a cuppa and asking me how I was (can I hear you laughing!!!!) lol

Of course, I was wrong. She was nice, talked a bit about DP, didn't ask anything really about Ellie or how we coped as a family and left with some paper work and that was it!!

Think I was expecting too much!!!

Who do you all talk to?

OP posts:

buzylizy · 26/02/2006 12:19

I am lucky as my sw is very good. It helps that I knew him before as he was my dd's beaver leader. I also talk to other parents via a yahoo group for my ds's school. But have found this best.
Do you have family link in your area as that is a good way of getting respite and if it works having support.

Original poster

anniebear · 26/02/2006 12:45

Think I had a look at the Family Link the other day but it wasn't in my area

OP posts:

eidsvold · 26/02/2006 12:49

I was lucky enough to hook up with another mum from our sn playgroup - so we moan to each other..... other than that - my fabulous SIL and my dh.

coppertop · 26/02/2006 12:52

We still have a portage worker for ds2 and she's lovely. She's also very interested in ds1 too and loves seeing him during the school holidays.

There is no official support for ds1's difficulties. It all seems to come to an end once they start school, doesn't it?

KarenThirl · 26/02/2006 13:42

I'm part of an excellent Barnardo's-run support group. The main coordinator has been really helpful in attending meetings and giving advice, and I've made two good friends of mums with AS children, who I meet with regularly with their kids. One of them even goes to J's school, although he's in Y6 so he'll have less contact with him once he moves to secondary in Sept.

I'm quite lucky - inlaws are very supportive (although it wasn't always that way, iykwim), as are my mother and sister. Also have good friends (of both AS and NT kids) who are keen to learn about AS and are accepting of J's difficulties. One other very good online forum too, in addition to this one.

It makes up for having a crap bunch of professionals around us.

macwoozy · 26/02/2006 13:44

I have no support whatsoever, apart from on here. I would imagine that if ds was in a SN's school then it would be pretty likely I would have become friendly with some of the parents who were in a similar position to myself. I'm not part of a close family so I can't rely on their support neither.

When I last took ds to GP, she asked if I had a support network, but ds was in his destructive mode so I had to leave, I never did find out what, if anything was on offer.

kreamkrackers · 26/02/2006 15:42

just started getting our support from here

Evasmummy · 26/02/2006 15:47

when dd 1 was a lot smaller (nearly 14 now) we had tons of help. wee workshops she could go to,afterschool support group, social worker dropping in with ideas,birthdays of other sn kids in the groups. now she is a teenager it seems that we are on our own ship. recently when my mum was very ill and we thought she wouldn't surrive the ambulance to the hospital i rang the sw hoping that they could arrange some kind of emergency respite for dd even for a few hours after school so i could get to the hospital. firm answer of 'sorry thats not possible she needs to be assessed blah blah blah'. But when she was younger i got ' if you feel you need a break at the weekend, you can ring and we might get an emergency place on respite for the weekend'. Cant win! Since i married my dh,(was single mum b4 that) i feel like no-one wants to know. School is brill when she is there though so i cant say enough about them, but as for any other support..................

buzylizy · 26/02/2006 18:52

I forgot my most important suport when I posted earlier. I have a friend who I met when dd was in nursery. Although our dd's are now at different schools we keep in touch. I love seeing her as we laugh. eaven when we are talking about the darkest thing we end up joking and seeing the funny side. Fmaily just don't get it.

Davros · 26/02/2006 20:32

annie, you can't wait for the SW to ask you things, you must tell them. And if you feel you haven't given them a full picture of how things are then write it down and send it to them. I've gone back to them after they've visited and think they've done what they need to do. Make sure its on the record and be clear that you are asking for HELP.
Over the years I have evolved various sources of support but its mostly been other parents of children with SN who I've met over the years. In the last couple of years we've had access to some playschemes, holiday schemes etc. Up to then the only support we got was support I "created" iyswim. By getting involved with support groups and parents' groups etc. I am known as a "serial joiner" and I would turn up to the opening of an envelope, but it has stood me in good stead over the years.
The most support I've had over the years though is DH.... NOTHING from family, only lovely people I've found who we've had to pay.
After the first couple of years I also got invovled in GIVING support to other parents and this does come back very positively. Not that I'm saying anyone should do this, I find it has worked very well for me and I only did it when the time was right.

Davros · 26/02/2006 20:33

How many times can one person write "over the years"?

getbakainyourjimjams · 26/02/2006 20:37

PMSL @ turning up to the opening of an envelope.

My main SN type support comes from people in the same situation. I have 2 close friends locally with children with ASD- one has a high functioning daughter (AS) and the other a verbal dd with ASD. So although our day to day concerns and problems are quite different we still have an understand of what we're all going through.

Agree with Davros about offering support can lead to it coming back, organised a few things a few years ago, put it all on hold for the next few years as I'm too busy/knackered but hope to go back to that sometime when ds2 and ds3 are older.

Lay it on with a trowel with SS- you have to Writing it down can help if you can;t do it face to face.

getbakainyourjimjams · 26/02/2006 20:37

oh my 1st SS visit was just paperwork- the second one started to look at needs etc.

getbakainyourjimjams · 26/02/2006 20:39

oh and the important thing about the friends with kids with SN is that we can all drone on to each other in a way that would bore anyone else rigid. Luckily we seem to take it in turns to have bad patches.....

Davros · 26/02/2006 20:40

I forgot to mention MN which I do find a wonderful source of support. Its quite different to anything else as you really can reveal all and get so much emotional and practical support. I don't get into anything like this depth with day-to-day RL friends. But the RL friends serve a different purpose too as we don't whinge to each other too much, but we do have a laugh and I've got one or two friends who will have DD while I go to school meetings and I'll help them in the same way.

monica2 · 26/02/2006 20:48

Emotional support - A few good friends in the main/ dh/ used to go to the support groups but gets very repetitive/mumsnet/wine/chocolate
Ongoing practical support - a big zero

Eulalia · 26/02/2006 20:49

I take it you mean emotional support... have just started counselling once a fortnight - I got this through the Carers Association. Felt a bit of a fraud doing this as I feel I don't have any real 'problems' as such compared to alcoholics and such like. however its really helped to just have someone to have a good old moan too. Its also made me realise just how much I do without even thinking about it. Other than that not a lot really. I see a friend very occasionaly whose daughter has Aspergers and she gives me good advice.

My parents take ds out maybe once a month - 6 weeks but will have me round for lunch about every 10 days and I go there for coffee. Sometimes I find it hard to relate to 'normal' friends and find it hard to have time to see people too.

Davros · 26/02/2006 20:53

I've said it on MN before, but I do find setting aside time to "do nothing" if at all possible really helps. I need to rest anyway as I have a long term illness but I don't always get the chance. SO I try very hard to schedule time to do nothing, often something happens and I don't get it but at least planning to do it means it happens sometimes. Doing nothing for me means being at home, old film or house improvement prog on TV, copy of Heat, cup of tea, choc etc.

JakB · 27/02/2006 09:52

My mum, who 'gets' DD better than anybody, some good friends who have children with SN (Monica ). The fantastic people who have worked with live through her ABA programme (Monica again ). Groups and like Davros says, helping other parents (got alot our of setting up a toddler group for children with special needs). WINE, WINE, WINE, WINE...

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