about the sn transition topic(73 Posts)
does this mean we are not going to have a transition topic now for post 16 ?
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?
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.
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
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?
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 ">
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.
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.
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.
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.
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.
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.
This is making me feel very unhappy.
Going to take a break.
Lougle, if I am not mistaken (and I dont think I am - dd1 got her amazing memory for useless facts from somewhere ), 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 ) 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.
Yeah 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 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.
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 too. Posters are getting offended when there really is no need to be if you read between lines.
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.
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?
I wasn't being sarcastic. I was pointing out that the concept is flawed when you look at it across other age ranges.
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.
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.
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?
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.
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.
Well then, MNHQ will sort it out, I'm sure. No point in posting further here.
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