How could we help ?

[travellingwilbury]

Firstly apologies for posting in here , but I keep reading on MN about the lack of support a lot (all?) of parents with SN children receive in the uk . I was under the misguided illusion that things were a lot better than they appear to be .

It has been mentioned that parents of NT children really need to get on board and try and get things changed but I am sure I am not alone in being willing to try and do something but I have no idea where to start .

I am assuming maybe naively again that there are pressure groups out there that are fighting already and I would be grateful if someone could point me in their general direction .

Again I apologise for putting this post in your haven but I didn't want it getting lost on the main boards and I was after opinions from people that know rather than guesswork from people like me which may well be well meaning but not right .

TIA

Don't apologise for anything, thanks for caring! Others might have more specific ideas of how you can help, but for me a big help would be more people sharing your attitude and passing that onto their children and generally creating a positive, welcoming environment for SN children. Thanks for taking the time to care.

Well put Seuss, its lovely to hear you care!

From my perspective all I want/need from parents with NT kids is to understand that some children require extra help, understanding and patience and not assume that all 'naughty behaviour' is down to bad parenting. Parents of some SN kids just need some support particularly in the hostile playground and to know that their kids are accepted as much as everyone else's.

That's just my own personal prespective anyway

Thank you for coming on and enquiring, its very refreshing to read

Hi,
I think, firstly, just acknowledging that you can help is a great start. There are pressure groups, especially for autism spectrum disorders.The NAS (www.nas.org.uk) ran a campaign called Make School Make Sense and is now doing one called Don't Write Me Off for adults with autism. Their website gives details and ways to lobby your MP.
One of the main problems with SN is that only those parents/carers involved are really concerned so information gets sent around to the same people all the time. If those with NT kids could jump on board and get involved, I think that would be a major step forward in school inclusion.
A particularly difficult area for schools is trying to work with SN children whilst also pushing the academic attainment of NT children. Personally, I think society would be a better place if we all concentrated more on developing the 'whole child' rather than just pushing for top grades in academic subjects. This would require a whole social and educational shift and would need to start with parental pressure in order to force the government to change the educational focus.
Perhaps you could start with your children's educational setting, be it nursery, primary or secondary. What could you do to help include the SN children? Could you have an autism friendly party or school trip? Just showing teachers and other parents that you have some understanding and a willingness to try may be enough to start the ball rolling and get others interested.
Do let us know how you get on with this as it is a really important topic. We need lots more parents like you.

Thank you for all the lovely replies , I was so nervous about intruding .

I will have a look at some of the agencies you have mentioned and have a think about any ways I can help . Our schools here do seem very inclusive already and I did get the impression that social services were pretty good (or at least certainly better than a lot of peoples ) I think that is why I was so shocked the last couple of days reading about different experiences .

If you wanted to get involved locally you could talk to local groups and see what is needed. Sometimes local campaigns are run. You may be recruited by a local group as someone who could help letter write to social services for example.

Every child needs something different. For example DS1 is autistic but he doesn't need more inclusion, he needs less - he needs specialist playschemes and events. Things like Surfable have been brilliant for him.but he also needs to ensure that he can always access his special school, that that doesn't get taken away from him. Those sorts of things can be big issues in some areas.

If you met up with a local group you might be able to find out which issues are important locally. Maybe near you children are waiting for over a year for a suitable wheelchair for example, or maybe there is no playscheme suitable for those with severe learning disabilities. If you do something locally you might get more of a sense of making an impact and helping to bring about change.

Hi Saintly,
How funny to see Surfable mentioned.
Well, if anyone wants to support Surfable, you can donate to my fantastic JustGiving page! www.justgiving.com/Sara-Lyons

The more money we raise, the more surfing programmes we can run.

links such as this every disabled child matters are a way to help.

Alot is little things. Schools may try to be inclusive but when my oldest was at mainstream he seldom was asked to parties or for play dates. Mums were afraid of asking.Other parents in mainstream say the same and they are so grateful if someone does ask their child to something they drop everything for the event. If afraid ask. I would have apreciated z would like to ask y over to play . whats best If you come too for the first time or are they OK on their own. From our point of view on his own but a short duration worked best. Hope that makes sense

meltedmarsbars , that is the kind of thing I was thinking about but I would never have known where to start . I have friends with SN kids but I didn't want to ask them as they generally have more than enough to be doing without digging about for info for me .

You should ask your friends. I expect they'd be grateful that you were showing an interest and probably very keen to chat. Many parents with SN kids try not to talk about their difficulties because they don't want to appear obsessive or bore their listeners. As Mary21 has said, just inviting a child over for an hour or son would be a wonderful start. If you have a party for your child, invite SN kids too. Ask their parents for advice regarding food, games etc and invite the parent to come along if that would be easiest.

asteroids , I only have a couple of friends with SN children and they do talk about how hard it is for them but it tends to be more emotional stuff than practical help they need from me . Their children are also a lot older than mine as well so it would be a bit odd . There are no SN children in my boys class so that isn't really the way to go either .

I am guessing I would get some odd answers if I just started stalking SN kids and inviting them round randomly

asteroids , I only have a couple of friends with SN children and they do talk about how hard it is for them but it tends to be more emotional stuff than practical help they need from me . Their children are also a lot older than mine as well so it would be a bit odd . There are no SN children in my boys class so that isn't really the way to go either .

I am guessing I would get some odd answers if I just started stalking SN kids and inviting them round randomly

Hi,
Don't start stalking the local SN kids!

When you visit your friends with SN kids, do you talk to the kids? I know it can be quite difficult to engage them in discussion but very worthwhile of you can manage.
Are these the kids/families you particularly want to help? Are you looking at a specific disability such as autism? OR do you just want to do more to help generally?

Sorry, starting to delve a bit now but just want to be sure I'm offering useful advice.

I am worried about talking about my friends kids in casethey are here tbh , the last thing I would want to do is to upset them . But one has got cp and makes me think a lot of Rivens dd and the other has got autism . Yes I do always talk to them and interact with them . They are both two of the nicest children I know .

It was stupid things like the 4 nappy rule that really irked me tbh . I am very confident that this is not being done in my friends case .
Why would that be ?
Just luck , or a good continence advisor who ignores guidelines ?

travellingwilbury, I understand your concerns. I'm glad you talk to your friends' kids as that is a good start. Lots of people don't talk to the SN kids, just to their parents or carers.
Have you thought about becoming a befriender or advocate? I think the NAS has information about both. Also, you could volunteer to help at a youth club or something similar. Just an hour a week is often very much appreciated. Opportunities like these also help you find out more about local issues and how you can campaign to change things.
One of the main issues in my locality is the lack of after school/weekend activities for children with SN. Parents (as you will know) are desperate for a bit of respite but there aren't enough suitable services and local authorities are very reluctant to fund respite even though it is essential for all members of a family.

Oh are you involved with surfable asteroids? Great event-has given us a couple of fantastic days (and I am still having wet suits thrown at me and a 'nanee' - ds1's word for surfing- every weekend). It was something I never thought would work but has been brilliant. We had Dave Manley the first year and he was great as he just sort of threw ds1 around (nicely!). Another great instructor this year.

Things like surfable and horse riding make all the difference to us.

Hi Saintly,
I got involved because I decided I wanted to walk from Dover to Lands End to raise awareness of autism and then thought I should use it as a fundraising opportunity. I contacted Lifeworks because they're quite local and I felt the surfing fitted in well with my coastal theme.
I went along to the Bude event and met Dave and family as well as other people involved in Surfable.
We're now trying to get a main sponsor for my walk and get the fundraising off the ground. There's more info at the JustGiving site and also at www.lifeworks-uk.org
Please pass the information on and get people to donate. I'm setting off from Dover on 2nd April and walking along the south coast, hopefully going across the the Isle of Wight if I can get a very cheap crossing.
As you said, the surfing works!

Oh I have a link on the Lifeworks page - to this video! You must live very near me (and you have reminded me I MUST order some photos through Lifeworks- with the postal strike I forgot - job for tomorrow).

For us things like Surfable make a huge difference because they make ds1's life more 'normal'. He just cannot access mainstream events, so without specialist days we just can't try this stuff. It really extends his boundaries. And it is fantastic that Lifeworks can cope with severe learning disabilities as well - not every organisation can, obviously their involvement with Robbins means they're very experienced - but it does make a difference. I didn't do the first Breaking the Barrier as I thought there would be no way ds1 would do it and it would just be another event where I'd be apologising for him running around feral, but Lis really encouraged me to go for it the second year it ran- and wow - what a day.

I love the pic of you on Dartmoor on your Lifeworks page. I have been thinking for a while I'd love to set up some sort of walking events/group on Dartmoor. DS1 is very calm when we get up onto the high moor. But there are lots of places I just can't take him alone, and I always feel a bit nervous when I have to navigate and keep him going in a straight line iyswim. I wonder whether there would be other people who would like to do that sort of thing?

I have Surfable, I have just discovered Horse Boy Camps which covers the horse riding so I just need to sort out the walking then we're laughing

Glad you like the pics. The video looks great.
Walking is fantastic for me as it's such a good way to relax. I was out on Dartmoor again last weekend.
The team at Lifeworks and Surfable are wonderful. I did some training for the Lifeworks team recently and was given a tour of the Respite centre at Robins. How wonderful to have a place like that.
I think a walking event would be really good.So...how to get in contact with other local people who might be interested.....

Yes.... that's always the question! How to find the people who can help out! We don't use Robbins (wrong council) but I have heard very good things about it - ds1 goes to somewhere similar and it does make a difference.

I will donate to your walk by the way, but I think I will do it using dh's name as he's a taxpayer so you will get gift aid as well then. So I think I need to wait for him to come home.

Thanks very much. So are you Devon or Plymouth? I'm actually just across the border.
If it's easier, you can email me through my website: www.asteroidsautism.co.uk
We seem to have hijacked this thread....

Thanks - will email you. I'm in Plymouth.

MrsT - what are Horse Boy Camps? Ds2 has just discovered riding through school and loves it - it's something that I'd like to continue with outside school hours if possible.