about the sn transition topic

(73 Posts)
threesocksmorgan Fri 09-Nov-12 15:12:14

does this mean we are not going to have a transition topic now for post 16 ?

HelenMumsnet (MNHQ) Fri 09-Nov-12 16:54:56

Not sure we get what you mean, threesocksmorgan. Can you give us a bit more info?

I obviously can't speak for 3sock, however I feel she is after a topic for our children who are disabled and special needs, who have reached adulthood. They are still our kids but they are not children or teens. You deal with different services, different benefits and a different system. Which all comes under the umbrella term 'transition'.

HTH

I get what threesocks means - 16+ kids with disabilities is a very different kettle of fish to younger kids, the system can be a minefield and I know that in 8 years I'll be very glad of it!

dottyspotty2 Fri 09-Nov-12 23:25:05

all you've done is change the title to teens and young adults that's not transition I've gone through it with my son and it is totally different to what is being asked for.

coff33pot Sat 10-Nov-12 00:00:11

I dont need it right now but it would be good to have a topic purely for transition for us to be able to refer to in the future when it arises.

threesocksmorgan Sat 10-Nov-12 00:25:23

yes it would be so good to have a transition topic. I never realised how much changes when your young person reaches 18.
it does not matter what disability your young person has, at 18 they will be treated as an adult by all the agencies involved.
there will be lots of decisions that parents/carers have to make and any support they can get from people going through, or who have been through it will be an advantage.
the next transition is into post 25(I think) and once again people going through that will need support, and will also be able to give valuable advice to people who have are behind them.
I know there has been a lot of posters who are against this, who think that a child is always a child, so the children's sn topic works. there have been posters who have talked about their Childs mental age, and said because of this they feel we should all use the sn children's topic.
but post 18 all children with sn will be adults, they will be treated as adults.

IMO it is a shame that there is not a post 16 transition topic. somewhere to just talk about what will be the biggest changes a parent of a young person with sn will have to face.
a topic that is aimed at 16 plus transition upwards would enable parents of young people/adults to share what they have learnt and support each other would be and asset to mn IMO,

TheLightPassenger Sat 10-Nov-12 09:57:44

yes, agree with 3socks. The practical issues in dealing with "the system" for teens with SN who are under 16, in school, under children's hospital/SS etc are v different for those are 16 plus, dealing with adult hospitals, different SS teams and budgets, care packages/college placements etc.

HelenMumsnet (MNHQ) Sat 10-Nov-12 11:29:28

Right, OK, see what you mean now.

This is different, though, to what we proposed on the discussion about rearranging SN topics here

Do you no longer agree that having a SN: Teens and Young Adults is a good idea?

We're sorry that the SN Topics reorganisation is taking longer than originally planned <techy stuff that's kinda out of our hands> but, as we were conscious of the much-voiced need for the SN: Teens and Young Adults topic that was proposed, we've made that change ahead of the others.

Obviously, if it's no longer needed, we'll have to rethink. sad

Do let us know - and we'll go back to drawing board, if necessary.

threesocksmorgan Sat 10-Nov-12 12:12:20

tbh I think a new topic not linked to sn children would be good, and not hidden,
it would be good to have people not from the sn world posting as they will have experience in things like your young person going away to college and things like that.
I have ot say I didn't realise all that was going to happen was the teens topic was going to be re named. I thought there was going to be brand new topic.
you can tell I don't go into sn children

2old2beamum Russia Sat 10-Nov-12 15:09:54

I would like to add my 2 penneth.
SN children grow up. I know the 1st years are hard and you then get on with it. As they get older health problems (even more)and psychological issues occur
At 15 + - transition starts who do you turn to----other mums ofcourse.
Do you go for residential college (not right for all) local college again debateable.
Then comes the awful time "indepedentl living" or stay at home with parents For some parents it is easy for others it is heartbreaking as we are getting older too. Day services cutbacks are making placements scarce
We as parents need support re benefits look at the ATOS disaster. Then along comes PIP.
I could go on for hours. Where do I get my support and encouragement MN
We need a place on MN for parents with adult SN's

threesocksmorgan Sat 10-Nov-12 15:12:26

2old2beamum just to add to the confusion for me it started at 14, and again at 16 for 19 plus.... I was asked to start thinking about 19 plus when I didn't even have the decision about 16 plus.
confused? I think just that proves how bloody hard it is.

threesocksmorgan Mon 12-Nov-12 22:12:51

I see.... no response.

2old2beamum Russia Mon 12-Nov-12 22:38:42

Can't understand do people think SN goes away midteens it does not Had friend ring me today re contraception yes some are sexually aware (sorry to misinformed SN's are sexually aware)shockshock

threesocksmorgan Mon 12-Nov-12 22:40:24

i noticed there is a new topic, something to do with starting up a business!
so I really do not understand mn hq's reluctance

2old2beamum Russia Mon 12-Nov-12 22:51:19

I am sure my 5 would love to start a business perhapr your DD would like to join them please let me know your thoughts Maybe something in transport!.

HelenMumsnet (MNHQ) Tue 13-Nov-12 10:21:05

threesocksmorgan

tbh I think a new topic not linked to sn children would be good, and not hidden,
it would be good to have people not from the sn world posting as they will have experience in things like your young person going away to college and things like that.
I have ot say I didn't realise all that was going to happen was the teens topic was going to be re named. I thought there was going to be brand new topic.
you can tell I don't go into sn children

Right. Well, there's obviously some confusion here. We did try to spell it all out in our post a while back.

So, to be clear, you're looking for a topic that's NOT in SN that's about transition for older children - whether SN or NT?

HelenMumsnet (MNHQ) Tue 13-Nov-12 10:27:47

threesocksmorgan

i noticed there is a new topic, something to do with starting up a business!
so I really do not understand mn hq's reluctance

We're not reluctant. And we're really quite shock that you might think that.

As we've explained before, several times, the other changes to the SN topics are pretty complicated, tech-wise. The SEN one, for example, requires us to make that topic accessible both from SN and from Education - which is a new thing for us, and so requires some back-end building.

This is being done but we're afraid it's not a three-second job.

We put the SN Teens and Young Adults topic change up ahead of the others because there were so many posts asking for it as a matter of urgency, and it wasn't as complicated as the other changes.

It's a real shame that this doesn't seem to be what you're after now.

threesocksmorgan Tue 13-Nov-12 15:59:32

I think I just got confused as I thought there was going to be a new topic, I didn't realise it was just a name change.
I might be alone in not wanting it as part of the sn topic,. my problem with that is for the most part we are talking about adults. so linking to a children's topic like that seems wrong imo.
I also think by having the topic there we will miss out from the wider audience and potential posters.
obviously a header reminding people it is an sn topic would be useful though.

ok shoot me if I'm way off the mark, I haven't read all posts and feel ill, anyway, how about changing the special needs children section??

This area sees the most traffic even posts from special needs teenagers and education get moved here as well as behaviour and some health.

So, why don't you change the topic to: special needs 0-25 also coinciding with the new government guidelines?

TheLightPassenger Tue 13-Nov-12 18:55:23

Is it easier to create a separate topic than a sub topic? (am a complete novice at any form of forum/web site design).

threesocksmorgan Tue 13-Nov-12 21:36:59

but then we would end up with what we have now, only even busier. I won't post in the sn topic, so maybe I should bow out.

Lougle Tue 13-Nov-12 22:20:14

threesocks, will you get offended, though, if people post with advice that isn't applicable to a young adult with SN/disability?

You (quite rightly) get offended if people talk about 'down syndrome children' even if they are clearly posting in ignorance, rather than malice. Are you going to correct every poster who stumbles in and posts in ignorance or naivety?

The whole reason SN:Children was made opt-in was so that people couldn't just stumble in and post when they hadn't seen the context. Do you think that those problems will evaporate now your child is 18?

Also, it feels a tad offensive that you don't deem SN:Children good enough for your posts about your DD, tbh. Are you suggesting that we don't have the ability to offer support or advice? Will you be offended if people offer advice when they don't know firsthand, the issues you face?

I can't work out quite what it is that offends you about the SN:Children board. If MNHQ are offering to rename it, but you won't accept that, then it clearly isn't just the connotation about age.

I don't understand. MNHQ have tried, I think, to accomodate your wishes, but I'm sure this is the third or fourth time the goal posts have shifted.

Lougle Tue 13-Nov-12 22:24:16

Looking back at that thread, MNHQ said

"We're thinking of renaming SN Teens - as SN Teens and Young Adults. Anyone violently object?"

The response was 'brilliant idea'.

So how were they to know that the actual response was 'brilliant idea as long as you don't keep the topic in SN, and the topic is visible to the whole forum, and the topic is actually separate from SN'?

threesocksmorgan Tue 13-Nov-12 22:39:09

Lougle Thank you for your post, it saves me from having to explain why I don't post in the sn topic, better than anything I could write. it was because of post like this I stopped.
As I have said I am now bowing out ad tbh I have too much going on with transition to keep trying to get support on here.
I am sure should I need support I can get it on the main board or on fb/RL.

I would just like to point out that once a young person reaches 18 they will be treated as an adult by all agencies involved, and by law.
so they will not be children.

CouthyMowEatingBraiiiiinz Tue 13-Nov-12 22:43:08

Yep. I agree. My DD will be 16 in less than a year and a half. And it is a very different kettle of fish to dealing with SN's in children under that age.

CouthyMowEatingBraiiiiinz Tue 13-Nov-12 22:54:57

I mean that I agree with some bits of it. (Really should RTFT first!).

I can see some of what three socks is saying.

The issues I am dealing with with my 14yo would be off my radar entirely for my 21mo. Like contraception.

And dealing with contraception for those who have SN's ISN'T the same as dealing with it for an NT teenager.

I think that possibly having it as a stand alone section would be good, but as HQ say, the techy bit isn't really set up so that a topic can be accessed from two points, and it's taking time to sort that for SEN.

And surely a topic called SN teens and Young Adults does cover the main transition points? You're a teenager at 16, you're a teenager at 18, you're a young Adult at 25.

Tbh, I still class people as young adults until they get to about 27/28. SN's or not. But that might be because I'm getting older...grin

I would have thought that the new topic DOES cover the main transitions?

Lougle Wed 14-Nov-12 06:37:42

Threesocks, the only thing stopping you getting support in SN Children is your own sense of principle. For years now, you've said that you won't post about your DD's issues because they are personal to her. You won't post about strategies you use because they are personal to your DD. You won't post in SN Children because people who care for children with SN couldn't possibly understand what it's like to have a teenager. That you won't post on the main boards because people couldn't understand what it's like to have a teenager with SN.

When the teenager bit was set up, you complained that it was like tumbleweed, that no one posted and it was isolating. Who did you expect to post? You'd already told us that as parents of children with SN couldn't understand...

You've been told before, that your contribution would be so valued on SN children and we'd love to support you.

WofflingOn Wed 14-Nov-12 06:49:05

I've got a teenager with an SN, and although I sometimes choose to link that to certain topics on the main boards, I'm much happier with a teens/adult section in SN if I want to discuss something specifically related to his needs and the fact that he's coming up to 18 now.
What would be the point of having it on the main boards other than to confuse and frustrate a lot of people who would offer completely inappropriate advice and then get huffy when I said 'That really won't work for him'?
I'm sorry that you think the SN boards are irrelevant to you three socks, but it looks like what you want is unrelated to them anyway, and you want a general 'coping with your young adult' as a mainboard topic. Which is fine, but why talk about it linked to the SN request?
I'm confused.

Apparently Lougle The SN section isn't 'opt in' anymore, it's an open board.

The SN board has changed as people chane and maybe it's that what 3socks can't get away with anymore. I find it not as friendly and a bit patronising at times.

Anyway 3socks why don't you create a generic Q relating to transition, not necessarily about DD and post on a few different boards for a response.......like a test, should be interesting.

Lougle Wed 14-Nov-12 09:10:07

Are you sure, Devient? I just went to 'customize' and it says:

"You can opt never to see certain topics in Active Conversations or opt in to see the Special Needs topic (*which otherwise does not display*). To manage these options (and your list of hidden threads, if you have any), go here (but do save first if you have made other changes on this page)."

I'm sorry you find it not as friendly and patronising. That's horrible sad. I know I don't post there as much these days, but I'm sure nobody would want it to be that way.

I thought you got quite a good response to your last thread, although nobody had solutions for you; do you disagree?

hmm, to hear everyone on the board it's a visible board where anyone can post, haven't looked into settings etc So do you still have to ask MN to join so to speak?

There's a few who seem to know everything, plus if you look through the board, one person could be asking similar to another, one gets everything and the other gets nothing. It's very clicky and as if your name fits, which obviously mine doesn't lol.

Unusually, yes I got a good response without solutions, I'm sure people see my name and steer clear, maybe I should try a name change.

dottyspotty2 Wed 14-Nov-12 10:45:34

No its not opt in I left came back with a different name in about January and didn't need to opt in to it.

Lougle Wed 14-Nov-12 12:15:57

I just did a test about the visibility of SN:Children. I re-registered with a different email address.

Although you can find SN:Children on the Talk menu, if you haven't opted in to SN, you can't see SN in the list of active convos.

I posted on Devientenigma's thread in SN:Children as "Optin" just now. I then clicked 'active convos' and it didn't show up.

When I logged back in as Lougle, it showed up.

silverfrog Wed 14-Nov-12 12:34:48

the opt-in-ness of SN is just to stop it appearing in active convos. always has been.

anyone can find it if they look for it via the topic page, or bookmarked etc.

but it does stop the posters who scan down active convos, see a 'arrrggghhh! my 8 year old is not toilet trained and I cant find pull-ups to fit!' thread and bundling in not realising it is in SN. anyone reading that thread is aware enough to have opted in or to have looked for it, iyswim.

threesocks, I am sorry you are not getting what you are after, but I do agree that you have changed what you wanted a few times.

I do understand that teens and young adults with SN are a different kettle of fish entirely, but I don't agree that a separate place is necessarily needed (this is just a difference of opinion, not saying you are wrong for wanting one) - I have posted about teen/adult issues on the SN board and got useful advice.

I know the majority on there have younger children, but that is not going to change with a new section.

devient - sorry you are feeling unloved. I haven't been on the board much recently, but I do try to answer when I can (not that my replies are any bloody use, probably)

Recently I've seen a lot of posters with teenagers pop up in SN Children, with 14-15 yr olds worried about the next steps. IIRC their threads were answered.

2old2beamum Russia Wed 14-Nov-12 19:07:09

Can someone tell me where to go and ask about my 32 year old DS with Down Syndrome who after a seizure strips naked with great speed. This is true and I love him so much. Only Mums need answer

BeerTricksPott3r Wed 14-Nov-12 19:16:40

2old, I think that may be a result of the confusion resulting from the seizure.

epilepsy society may have more information on this, in general terms.

coff33pot Wed 14-Nov-12 20:14:39

Is it possible to have topic in this carers section in health perhaps?

Maybe with a link to opt in to SN section there. So initially ppl that just lerk or are just testing the water of a forum can use that before fully opting into an children?

as 2 old said her son is 32 but she does have younger DCs perhaps those with just an older adult would not bother using SN.

On phone so no idea if that makes sense x

2old2beamum Russia Wed 14-Nov-12 20:40:53

Coffpot what you say is what I mean Where do us old and not so old mums (and Dads) go, we are not just carers but parents as well. We need to chat with parents who have been or going through the myriad of adult problems.
DD3 went through a phase of announcing to all she was pregnant----hope I did right and told her how "ladies" got pregnant. Fortunately she thought the whole act DISGUSTING----but did I deal with it correctly would have loved to chat with someone who did not roll up with laughter.
Could not have gone on SN children

Lougle Wed 14-Nov-12 20:45:24

"Could not have gone on SN children"

Why not? Don't you think we're mature enough to cope with the concept of a young woman with SN declaring a pregnancy? Why would we roll up with laughter? it doesn't sound remotely funny to me.

2old2beamum Russia Wed 14-Nov-12 21:00:27

I am sorry you just do not get it. The "cute" factor goes and you are on your own,be warned I have learnt with sadness I have virtually no one who understands my lovely adults who are so kind
I now bow out with heavy heart

Lougle Wed 14-Nov-12 21:04:14

Please don't bow out confused We are all telling you that we are willing to listen, willing to understand....what makes you so sure that we can't? sad

Wot Lougle said. Most of us know sure enough that your life IS our life in the not too distant future. To reflect on how we ourselves will deal with your current issues when they become ours gives us the opportunity to plan for them and you an opportunity to hear a fresh and objective viewpoint from people who really do care, if not yet completely in the thick of it.

I do not have a child of my own with SN, but I have opted into the SN topic. I don't post there very often at all, mainly because I feel very much like an intruder and am wary of saying the wrong thing or giving inappropriate advice.

I have a younger brother (a young teenager) with SN that mean he is probably never going to be able to live alone and unassisted. My dad is already over 60 and his wife is nearly 50, we have no other shared siblings and most of the rest of the family live abroad or are estranged - so I know that one day, I will be responsible for my by-then-adult brother's continuing care needs.

A transition topic would be really useful, I think. Myself, I'd 'expect' to find it as a subtopic in the SN topic - that is where I'd go to look for it, anyway. But then it would not reach the wider MN audience that other posters would want it to. Could it be made the case that some of the SN subtopics are opt-in, and some are visible to everyone?

And, 2old2beamum - had I seen a thread about the situation you describe I may well have actually responded to it with some suggestions (it is a situation I feel like I wouldn't be totally out of my depth advising on which is not usually the case blush), and I certainly wouldn't have laughed.

coff33pot Wed 14-Nov-12 22:07:40

I understand what 2 old is saying and I have to say I do feel for her. As I feel for threesocks.

1) We do laugh because it is funny the innocent things our children say and do. We try to be lighthearted about things to boost each other on. This is wonderful and it keeps us all going. Really we are at the start despite the long list of battles some of us have had.

But when they are older or like 2 olds of 32 it isnt going to be as funny is it sad

The game of play changes. DD doesnt have SN but yes she has needs at the moment and my experience of Adult Services were mind bashingly horrible. It was confusing and tougher to get heard. I can write hugs and post flowers to threesocks or 2 old but even though I have gone through having a teen its not the same is it...

The not posting in SN I can understand. It is full of parents with youngsters just starting out. Its a great place but not for some more mature parents with mature children/adults with very different next stage battles.

We can learn from them on SN children but we cant honestly say we can support them.

There is also the fact there are brand new parents with young babies. They are worried enough on the future without having it spelt out infront of them what they have to endure in the future whilst they are still panicking on present day stuff. Not without having a choice anyway.

I dont see why there would be an issue having a small topic outside of SN. Health section is calmer than the madness of AIBU or Chat. It just needs to be worked out diplomatically thats all.

Dont want to dampen anyones future with this post or offend anyone but wheres the harm in giving these woman a small corner. One we could well be joining....

HelenMumsnet (MNHQ) Thu 15-Nov-12 10:55:20

Thanks for all these posts. Do keep them coming - I'm sure it'll help us all work things out.

One thing we think it's important to clarify, though: the SN section has several topics within it and one of those is SN Children (the others include the new Teens and Young Adults topic, the Parents with Disabilities topic, the Legal/financial topic and a few more).

We do sense (but maybe we're wrong!) that some folks do think the SN section is just the SN Children topic and nothing else...

silverfrog Thu 15-Nov-12 11:02:59

thanks for the reminder re: the differetn topics, Helen.

I think a lot of people are guilty of just that - in my case because he SN:children topic is where most of the traffic is.

we have had posters routinely bumping posts/posting on threads in some of the other topics saying, basically ;this topic doesn't get much traffic. we would hate for you to think you are being ignored. please re-post in SN:children for a better response'

I can see why posters might want a different section, but I am not sure that that different section would actually get any traffic.

overall (and I men this is a wider MN sense not just pertaining to SN topics/sections) I think that the more a section is split and divided, the more chance there is of a post getting lost - posters only have so much time to read MN, and the more that multiple sections have to be checked, the higher the likelihood that posts will be missed.

the flip side of this, of course, is that the there is a chance that a highly experienced/valuable poster would hang out in one section only, and a lot of posters would miss the advice on offer, due to posting in the wrong section.

I know this is not a popular view (again, MN-wide), as many posters like to divide everything up, and there are topic police etc etc, but on the whole I do prefer wider topics so that a broader response can be sought.

Lougle Thu 15-Nov-12 14:07:16

I agree with you silverfrog. I am baffled as to how a separate topic will make any poster feel more understood. If that is the case, surely a 'support thread' within a topic would do just as well...except that the whole issue is that there are not that many people who will have experience of the posts in question.

On one hand, I agree that a separate topic shouldn't be a 'big ask' but on the other, just how isolating is it if someone posts in that topic and gets two replies?

Without getting overly emotive, it does strike me that the SN:Children posters are being told that they aren't 'good enough' to support those posters who are at a later stage in proceedings. Also, if everyone trots off as they approach transistion stages, where does the support for people who have to consider them but aren't there yet come from?

dottyspotty2 Thu 15-Nov-12 15:54:03

Lougle nowt to do with being good enough our young people aren't children my DS is 18 and has issues that don't affect children be different when yours are adults I'm sure of it. You will probable feel the same maybe not but I wasn't thinking about where we would be when he became an adult when he was a younger child.

Lougle Thu 15-Nov-12 16:34:44

But dotty, every one of the parents on Special Needs: Children are adults. Why do you feel that as adults we can't support other adults who have responsibility for someone with SN? Why does the fact that they have turned 18 mean that we are no longer able to appreciate the difficulties?

2old2beamum Russia Thu 15-Nov-12 17:24:20

I feel at 14+ there is very little knowledgeable advice for pupils with learning difficulties (ds congenitally deafblind) and complex health needs. What next??
I would not be cocky confident enough to give anyone advice until I had dealt with it myself.

dottyspotty2 Thu 15-Nov-12 17:48:49

Being a NT adult has no bearing on having a child with special needs we've had our time on the childrens boards time to move on times also change my DS didn't get his proper DX until this year had many sub dx but not main one did pop back and say he'd got it but thats about it I do sometimes have a look to see if theres anything I can suggest but a specific board for our needs would be nice.

As 2old says if you've not dealt with the issues how can you help

CelstialNavigation Thu 15-Nov-12 18:05:26

I think we need:

An "Active Conversations " board just for SN. I seem to remember something like that was proposed before.

It would mean that if a topic is bumped, people see it. Whereas at the moment if someone is just on the SN Children's section, it doesn't matter how much something is being bumped in another section, unless you are regularly checking each separate section, you miss it.

Is it actually possible to have a seperate "Active Conversations SN" board?

CelstialNavigation Thu 15-Nov-12 18:06:59

Also then there could be a separate "Transitions" topic as well as the general "SN Teens and Young Adults" one.

<I am getting a flavour of why the techs must really appreciate our input wink">

WofflingOn Thu 15-Nov-12 18:09:26

But it's not just about advice is it? Just having someone else say 'honk, it may be 3am, but I hear you.'
I post indiscriminately, I often feel that I shouldn't be on the boards at all because my children are almost adult and DS is nowhere near as severe in his needs as many others. But then someone says that I made them smile, or feel less alone, or that it is helpful knowing that sometimes the light at the end of the tunnel isn't always an oncoming train. And I keep posting.
Should I stop now? Maybe. Maybe not.

WofflingOn Thu 15-Nov-12 18:11:33

I'm now wondering how many random posters on the SN boards I've accidently irritated and annoyed by not being the right sort of poster. sad

TheLightPassenger Thu 15-Nov-12 18:24:45

Woffling - I have said before on here that I find your posts v useful indeed, for selfish reasons, although our children are nearly a decade different in age. Like you, I tend to post scattergun fashion, offering virtual tea and sympathy more and more these days than actual hands on advice. I can see the other side of this though, that people do feel more comfortable sometimes with "been there done that" advice than the virtual tea and sympathy.

silverfrog Thu 15-Nov-12 18:40:08

I have been on the SN board for what seems like forever. dd1 was under 2 when I first starting posting about my concerns. She just turned 8. Not old, in the scheme of what we are talking about here.

BUT.

When she was that little under-2, I read about children who were starting school, about how to go about Statementing, and about what services there were available for small children.

then she started pre-school. and I read about infant/junior transitions, because that is what we would face next.

and all the while I read about mainstream vs SN school, and how a lot of the time, children who went through primary in ms (which is where the LA wanted dd1) ended up in SN school for secondary. this was when she was three

now she is eight. and I am preparing for secondary transition - getting all my arguments lined up, and reading about others' progress and route and problems with LA etc. I was talking to a mum at dd1's school just yesterday about hormones and periods etc - dd1 is (hopefully) a long way off, but again , I like to be prepared and mull things over. and, as it happens, I suggested a couple of things to this other mum (whose dd is 13 and has started her periods) that she hadn't thought of. because of reading I have done on here, probably a few years ago.

throughout the last 6+ years of my life on MN, as well as reading up, gaining insights through other posters' experiences, and thinking outside the box due to various threads, I have also (I hope) given support. to those with children the same age as mine, to those with children younger than mine, and to those with children older than mine.

I have posted mostly on ASD threads, because that is what I know, but have also popped up on threads concerning other disabilities if I thought I had anything useful to add.

a lot of the time when I have posted needing support, there has not been any clear cut answer. dd1's sleep crisis (going back a few years now!) had me on my knees, and many other posters scratching their heads. hell, it had several consultants scratching their heads too.

did I ask anyone to not post because they hadn't been through anything like it? no.

not many people on the board had managed to gain what I did education wise, when I was going through it. it didn't stop a lot of lovely people taking time out of their day to look things up for me, which wre specific to my case, and not theirs in any way, to help me when I needed it.

that still happens now - posters go out of their way to find solutions for others. that is the point of the board.

I have had people put in hours of research to find me the right cup for dd1 to drink out of. to find me the right legal precedent to argue. to find me a bloody house to live in when we had to skip counties. none of these things had been experienced by the posters who helped me on each occasion, and quite frankly it is bloody arrogant to assume that one has to be living the life in order to help out.

pooled experience is what the board is about.

Lougle Thu 15-Nov-12 19:14:25

Once again, I agree with Silverfrog.

I am gutted, to be honest, that unless I have a badge of experience, then I'm not useful. I am, frankly, really quite good at finding meaningless bits of legislation and policies, giving them some meaning and giving a potential starting point for a way forward. I don't need to have done it myself to do that.

I, too, started lurking long before I needed to post. In fact, I read the SN boards as a lurker from when I joined in 2006. DD1 wasn't even flagged as having SN until September 2009, 3 whole years later. But I was able to hit the road running, because I'd read about provision.

Also, while I love the concept of a 'SN Active Convos', the very fact that we are being told that our advice is not valid if we haven't been there, means it is redundant. What is the point of the convo being flagged as 'Active' if the posters who see the flag aren't welcome to post advice or support?

Lastly, threesocksmorgan stated that she wanted the board to be 'open' so other MNers can see and post their pearls of wisdom. That's fine, but it's going to do the whole SN section a real disservice as soon as people post "you couldn't possibly understand what it's like to have an adult DD/DS with the SN mine has.....', when someone posts something insensitive or inappropriate. Which will happen, it's inevitable. That's why the SN section is opt-in (and it really is still opt-in, in the sense that threads only appear on active convos if you choose them to) in the first place.

WofflingOn Thu 15-Nov-12 19:16:26

This is making me feel very unhappy.
Going to take a break.

silverfrog Thu 15-Nov-12 19:23:58

Lougle, if I am not mistaken (and I dont think I am - dd1 got her amazing memory for useless facts from somewhere grin wink), isn't your username derived from the fact that you are, quite frankly, bloody amazing at coming up with the relevant bit of info/the right product/the bit of the COP that no one else can find, via Google?

I am certain that you have turned up many a useful nugget of information for many posters - there was a time when every second thread in the SN section was "Lougle, can you help me find.....". I know that the info you have found for me before now has not been from your experience of it, but 'just because' - a search you did because you read my thread and either found it interesting enough to you to do a search, or (more likely grin) took enough pity on the poor hapless harassed mum to help out. and tbh, it was all the more valuable to me because of that - it made the board what it was - a place where posters would go out of their way to help others. not just from experience of the problem, but due to experience of being in that place where no one else knows what to do.

Lougle Thu 15-Nov-12 19:40:55

Yeah blush Star suggested it, some time ago. It kinda stuck. It's what I treasure about the board. None of us can know exactly what it's like to be each other (DD1 with her SN fell down the stairs yesterday, knocking over DD3 with her NT 3ness wink who happened to be hiding under the coats on the newel post, as you do. Both girls screaming....cue massive meltdown from DD2 who has decided that this week is the time to reveal that her sensitivity to noise has peaked...it was a magical moment.) and often the only response that can be sincere is 'wow, that sucks!'. But whether it is a useless bit of information, a shared experience, a wacky idea based on some ABA therapy session someone witnessed, or a shoulder to cry on, it makes the world seem a bit smaller and a bit less daunting.

coff33pot Thu 15-Nov-12 20:08:36

I dont think anyone is being arrogant is saying you have to "live the life" to understand it. But the only way I can describe it is by writing as me and so not insulting or hurting anyone so here goes.

I dont know how to help an older SN child or advise their parents. I can support as in a hug, perhaps yes help with some research. I dont know about adult services and transition. I can say sorry you are low etc but I cant advise what I dont know and I cant find out till I have a child of my own. So I dont find it offensive when these people say you cant really help as they are right.

Putting myself in their shoes (hard as not there so am thinking how I was when DS had red flags rearing) What did I want? I wanted advice, support from those that knew thats why I came to the board. Panick and information from ppl that had been there before me, that had fought the system before me that could help steer me away from falling down dark holes and leaving myself open to not getting anywhere for DS.

Thats all these people want too. They are not saying we cannot support as in tea and hugs yes that is appreciated but also there is frustration on having a small group that CAN tell them they have been there and done that and dont do this or that.

I give up because this thread is making me sad too. Posters are getting offended when there really is no need to be if you read between lines.

Lougle Thu 15-Nov-12 20:19:08

Well perhaps then, we should have separate topics for infancy, because those parents of infants with SN can't possibly know what it's like to have a toddler with SN? And a separate topic for toddlerhood, because the parents of toddlers with SN can't know how to support those at primary school, and so on?

Of course not.

MNHQ will be the ones to decide, anyway. I just think that whatever is done, the SN section will be the poorer for it.

coff33pot Thu 15-Nov-12 20:24:50

Sarcasm is not becoming..........

I am not posting anymore on this. But I will say I hope they get what they want and I hope that it works well. No one will no unless it is tried hmm?

Lougle Thu 15-Nov-12 20:38:15

I wasn't being sarcastic. I was pointing out that the concept is flawed when you look at it across other age ranges.

coff33pot Thu 15-Nov-12 21:05:13

Parents with infants would ask the advice of parents with OLDER children that have been there. Parents with toddlers could give advice to the infants and ask those with JUNIOR children for advice. Juniors can ask those that have just started senior school but there it stops..............

There is an answer for everything Lougle but no one seems to understand that these parents are not saying as a vertual adult to adult discuss recipies, xmas, low times and need a buck up etc is not a good thing they are saying they want to form a niche to help transition as its not there.

coff33pot Thu 15-Nov-12 21:10:13

The only other thing I really agree with and understand is from MNHQ point of view. It does take a HUGE amount of time, work and prep and nothing can be done as quick as overnight. I have assisted in running a forum and as a moderator and still am. (not a parents one lol)

Its hard work, you cant be everyones friend however much you try you will upset the applecart somewhere and cant please everyone.

I just feel we must also respect that these parents also need hurried advice through their difficult times.

Lougle Thu 15-Nov-12 21:23:31

Genuinely, with no sarcasm expressed or implied - how can people ask parents of OLDER children, if those parents have left the board to go somewhere else? Why can't people stay and give support? Why can't those parents of older children, who have become young adults, offer support and advice to those who are coming through behind them?

slightlycrumpled Thu 15-Nov-12 21:45:56

I very rarely post on SN anymore, I don't really know why although I do read it frequently in case anyone with a syndrome the same as my sons is there.

I have no strong feelings one way or the other except to say that if the posters that are experiencing life with an adult SN child are saying that the current situation isn't working for them, that perhaps they are right.

I can also track down info at speed, legislation etc but nothing compares to hearing it from people that have dealt with it before.

Opening to the main board could bring posters out that help arrange care etc for their siblings etc. Posters that we wouldn't ordinarily see on the SN boards.

It is a shame that anyone feels upset by this though.

coff33pot Thu 15-Nov-12 21:48:13

Because these people are asking for support now? because they have only just started this path? Because there is no experienced mothers there at the mo? Because maybe they feel that if they were outside of SN children links then other older parents with older adults may feel confident to post? Some people are more private than others (I am talking how brought up due to age and how things change iyswim) so is two places such a bad idea?

Because they may not want to distress young mothers with over 18 issues? Or let them know that sometimes all is not rosey so they enjoy their children at each stage without looking to far ahead?and the future can be quite bleak sometimes with less assistance and not so many places to turn once the children become adults?

There are lots of possible reasons Lougle we are all different and look at things or have different reasons for asking something. smile

Lougle Thu 15-Nov-12 21:54:36

Well then, MNHQ will sort it out, I'm sure. No point in posting further here.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now