Can we talk about MNSN, and the community/support/chat etc?

[silverfrog]

This thread may not be a good idea. I am severely sleep deprived (ds has decided yet again that sleep is for the weak, and I have had about 4 hours sleep since Sunday), and had the morning from hell getting dd2 off on a school trip - change of routine, needed ot wear tracksuit not uniform, different drop off/pick up - you all know the score. If you all think it is a bad idea, please feel free to report and have it deleted.

Anyway.

Can we have a thread where we try to sort out some of the perceived isues with MNSN?

I keep seeing, on the main boards, posts saying that MNSN is not suportive. That some faces don't fit. That it's not all it's cracked up to be.

Fine. I get that not everybody is the same, and may not want the same things form this board as me, or other posters. But it isn't really said here, and so we don't reallt get right of reply.

It's a bit like talking about us behind our backs.

I know there have ben disagreements and differences over the years. I have been part of some of them, but on the whole I thought we muddled through quite well - expcially given that we are all under a reasonable amount of stress most of the time, and that we all face fairly different challenges on a daily basis.

So - what do people want form MNSN? Is there anything we (as a community) can do to welcome people who feel left out? Anythign we can do to help posters who lurk rather than post?

I am rather hoping htis might be a moving forward discussion, rather than a re-hash of any he said/she said grievances. BUt as I said earlier, maybe this is entirely misguided. Sorry if it is.

Thebotrinator I look back at my early posts and I really knew nothing at all. This whole issue isn't 'what do you have to offer', it's 'be part of life here, or don't, but don't refuse to be part of it and then point it out'.

Lurk, post, even a or on it's own can actually make people realise that someone has read their post - that's huge when you feel so isolated.

DD was born 13 years ago with her difficulties, we have adapted life to suit her and to help her. Making hard decisions along the way, knowing that there are still yet more hard decisions to make. Remembering that she is also a 13 year old girl and has the whole of her life ahead of her. Wanting the best for her but also wanting her to be confident in her skin and with the choices that she makes in life.

We are well past the dx stage with her! It's just trying to remember that "the best is yet to come!"

Yahoooo!

that made me , merlincat.

I love to read your threads abut your dd's successes - in fact, I love any success thread

I posted earlier in this conversation and I've watched it in my stalker way since - I'm glad to see others here feel as I do that I don't know enough to respond or conversations have moved on etc, etc - but I think it is to do with our own confidence/vulnerability and not in fact the board.... So after this I'm off to post about the Theraputic listening program which I'm just about to complete with ds - if it helps anyone then good! If not, no harm done. It was one of the people on this board who helped me understand this and get the best from my local OT.

Re: how people respond to my posts/contributions I want all the kinds of responses, the empathy, the laughs, the facts, strategies, the kick up the arse - keep it coming, I need all of it!

Ellen - I'm not spectruming, or even slightly unhinged its the rest of the world

Merlincat - your perspective IS important to posters like me, around two years behind you in the process (thank you MaryZ, I DO think you are right there!).

My DD is 15 in a couple of days, and I am starting to panic about post-16 stuff, as she is 'only' on SA+, as Essex have refused to even ASSESS for a statement despite numerous attempts from me since she was 3yo.

She is going to fall into a no-man's land when she finishes Y10 - too able for the life skills courses at college, not able enough to get the 3 'C' grades required to do the one college course she might be able to have any skill at.

She is also in the first year group that HAS to stay till 18 - so any advice from people with DC's with SN's aged 16+ would be very helpful to me!

So don't think that just because your DC's are older that there isn't anyone here needing their help - I struggle to post in teens because some of the replies are quite harsh, and don't take into account DD's SN's, and tbh, I'm a bit too sensitive right now to cope with that - I've been avoiding AIBU as much as possible lately too, which is unlike me!

And the SN teens section doesn't get much traffic, and often I'm looking for quick responses.

Please don't think that your experiences aren't relevant for people on MNSN - there's always someone you might be able to help!

[Shamelessly asking for help emoticon]

DisAstrophe - I'm taking the marathon approach, too. Between the two boys and my own emerging health issues and frequent spoonlessness, I have no choice.

I'm hoping to get DS1 settled in a new school for September - later in the academic year if the timing doesn't work out. I just realised, yesterday, that DS2's DLA is up for renewal early next year. There's a chance that DS2's mainstream provision will no longer be enough for him by the time he's the same age as DS1 is now and that will probably coincide with DS1's DLA needing renewal. This is all assuming that DS1's new placement really works for him and we don't have to look elsewhere for secondary provision....

And then, of course, we all have that matter of ordinary real life that everyone has to deal with. (like needing a lens changing in my super duper varifocals, so apologies if I've missed any awful typos)

See, merlincat a perfectly wonderful story that we can all share, now

What lovely news. I dream of my DD1 being able to have fingers that work enough for music. She melts when she hears music and her face just softens.

Merlincat, Id always be interested to hear about your DDs triumphs, I think performing in a recital is an achievement for any child, but I know how much of a big thing it is when that child has SNs.

I bet that will be a tearjerker!

It has been so lovely reading this thread, to hear what mnsn boards means to people. I think it would be great if the sn teens section were to merge with the children's, but has that been proposed in the past and rejected?

I was talking to ds's portage worker today about a new professional who is involved in ds's care (she of a particularly great caring carrot in the last couple of weeks) and I said that I didn't feel she was going to be of any benefit to ds, and that I would call her manager and ask for her not to come any more. She pointed out how much more confident I have become since she first met me, and how much more focused. I really do think that one of the main reasons for that is having the network of people on here. Whenever I have started to fray at the seams and fall apart, someone on here offers a hug, or a honk or practical advice or even a phone call telling me to focus (in the nicest friendliest way!)

Just to say as well, that when ds has been in hospital, I would have gone mad if it hadn't been for posting on here.

It all used to be one section, hazey, but then teens was separated out mostly due to some posters feeling unable to post in SN children. It is a shame teens doesn't get much traffic though.

waves at ouyve as she bounds past me on her marathon run.

I too like hearing about the older children/young adults. I'm now finally past the main dx stage (dc is 7 and I'm been posting/lurking for nearly 4 years).

I also have a sister with DS who is in her 30s so I know a bit about services and provision for adults but always happy to learn more. I have agreed with my parents to be her advocate when they are no longer able to do so - she is very articulate about what she wants so may not need my services too much!!

merrycouthymows
Ds (15 yr 11) is just starting the post 16 process. No statement just individual pupil funding (15 hours) . Hfa/ dyspraxia.
We had a meeting with a Sn support worker from the college he will be going to ( next door to his school) , the senco and someone from the youth support service ( I think this used to be called connexions). They filled in a learning plan document ( it was called s139a -I found that out from someone on here ... Thank you !) which outlines the needs of learners making the transition to a new area of education. We had to sign and ok this and it then goes with him where he goes in preparation for entry.
Ds now visits the college every other Thursday with the youth support personal advisor . He has had 2 visits so far. He's l
We are waiting on a formal interview when they will discuss the sorts of support he will be getting, but they have said that there will be support in place.
So we aren't sorted yet ... I go through fits and spurts with it... i need a kick up the arse atm to arrange another meeting with college to make sure it's all in hand ...But it's looking ok so far. >

We're probably at a similar stage, DisAstrophe - my boys are 9 and almost 7. DS1 has been tigger since before he was even born!

Ooh, thanks for that, trout sprout!

Except I have a bit of a thing about not responding to PMs because I once nearly drowned in them. Also, I'm just an opinionated MNer. It's pretty dangerous for anyone to only have my opinion. Far better their issue be the subject of a discussion with different perspectives.

Also, even if the issue has a straightforward answer, it reaches more people on the board. Lurkers don't have access to PMs.

Having said that I dislike the naming of posters in titles too, as that kinds of puts pressure on the person to respond and those not named who know the answer feel like an intruder if they contribute.

Lol. I guess I'm just a right ole misery guts!!!

Maryz. Now I have 13yr old twins I will watch your thread and mark my place. We have issues obviously but they're never insurmountable - so far.....! I am sure once they're truly teenagers I will be wishing they were still small and helpless!