I can't believe how unsupportive this board still is!!!!!

[devientenigma]

We are supposed to be here to support one another, cheer people up where possible, give advice where possible.
I have been on this board years and I would say the last year has been terrible!!
It doesn't matter what the ability or the need is we all still go through similar issues and feelings.
There seems to be a lot of jealousy and striving to be the best!!
The board has put me off posting a lot of my issues, due to the lack of support and hurtful comments that people have and haven't been giving.
I can not leave the board as my situation is desperate, however I have become more of a lurker, please also think what this has done to regular advice givers and supporters, people who have also been around for years...........gone!!!!!

coppertop, think you should start a thread I'll be there! It's not just school though is it, ds1 will have to get himself there as well [panic] may be I should have sent him to the girls school with dd2

at smashingtime

Hi, I joined MN a couple of months ago, and have to say have found it wonderful for support and advice. I would never deliberately upset, anger or hurt anyone, as I feel we are all in the same boat regardless of DC disability. I am genuinely sorry that some people have left though tbh i think i've missed the most of why they've gone and also perhaps wouldnt know who regulars or newbies are. I hope everyone can post whatever is on their mind or ask for advice when they need it, so that hopefully we can be there for each other. A huge thank you to everyone who has helped me over the weeks since i joined MN as it has been a godsend, even when not posting just to read the threads makes me realise there are lots of us living the same life and all we want is the best for our beloved dc.

thanks bullet

There have been a lot of changes over the past while with some long term posters no longer about which I think is a pity because they brought a different dimension or diversity to the board. For me, there is an unpredictability with the board atm, perhaps it's a period of transition and it will settle again, into something different.

However, overall, I have found the board massively informative, supportive, engaging and sometimes funny x

coppertop and bigcar can I join the nervous wrecks? DS2 starts secondary in Sept too!

What shocks me about this board is not how unsupportive it is-sometimes people say things which are rubbish and then other people come on and support them.
What does shock me is how little respect people have for professionals who have spent years training for their particular line of work and then are derided as shitty,useless etc because they do not give the poster their own way.

I suppose they are just sounding off here because they wouldn't say it to the person themselves. They feel safe saying that here, knowing that some people at least, will agree and will have had similar experiences.

It is sometimes frustrating dealing with professionals who don't always have the good people skills to go with their good qualifications. I'm sure they went into their various professions to try and help people and are sometimes equally frustrated by the restrictions that budgets etc place on them. But, for them, it is their job, only, and they don't have the emotional connection that we have as a parent.

We have to have somewhere safe to vent our feelings and shitty language is just the only thing that works, sometimes.

starterfor10: professionals don't get my respect just because they have spent years studying for their line of work.

I have spent years being dd1's mother. and, no matter how many years of expertise these professionals have, I am the expert in dd1.

if I had listened to the professionals, so far:

dd1 would not have a dx
she would not have a statement
she would not be at the excellent school she is at (we were told the only option for her was an SLD school. this is not a suitable option for her)
she would be ill, and unable to digest a lot of her food
she would be malnourished (see above)
she would be non-verbal (probably), certainly at school anyway
she would not be toilet trained

and that is just the broad, general examples. if I had the time (and inclination) I could type out dozens of examples where professionals not listening to me has been to the detriment of dd1.

equally, I have worked with some great porfessionals. who did listen to me, and to what I had to say, and who took the time to look at dd1 as an individual and not as a statistic. who bothered to think outside the box, and try to come up with a solution to dd1's issues, rather than tried to fit dd1 into an already neatly-labelled box.

it is not about getting my own way.

it is about getting the right support for dd1, so that she can fulfil her potential.

I will not ever let her be written off, and I will not ever stop trying to get the right support.

but sadly, there have been many professionals who have been downright obstructive and negligent, and who have tried to stop this happening.

sorry, meant to add:

dd1 is severely ASD. she attends an ABA school, and has severe food intolerances. she is verbal (excessively so at times ) and fully toilet trained.

but not thanks to the professionals who said none of this was possible.

I think people come and go on message boards. I used to post quite a bit but stopped partly because it was taking up too much of my time and life is so busy.

But I also began to feel that I was too often trying to swim against the stream of opinion on here. From time to time I have found medical professionals and teachers helpful and supportive. I don't do ABA: I don't like the philosphy that underpins it. To some extent I feel that children who grow up poor and/or neglected have much, much worse life chances than children with SN who have parents prepared to do everything they possibly can to support them.

None of those opinions is exactly popular on here, so it seemed better for all concerned to retire from the fray. I still read from time to time, and post very occasionally when I have something that someone might find helpful to say.

How can a whole board be supportive? Surely you have to judge it message thread by message thread?

niminy and starter I don't think people are anti-professional out of nowhere. There are unfortunately, far, far too many shocking stories and experiences out there, that other parents recognise and empathise with. Social services for instance, is an organisation that is structured along adversarial lines, where necessary help is often only given at crisis point, and sometimes not at all. This situation is recognised by most parents AND professionals. It is a disgrace and parents are rightly angered by it.

People quite often start positive threads about professionals too and comment on good things they do. Why not contribute to these if your experience is wholly positive, or give the flip side of the coin when posters are discussing difficulties with professionals? I don't think anyone would complain, unless you tell them that they are wrong. We can only speak for our own experiences after all, and mine have been a mixture of good and bad.

As far as offering another opinion on things like ABA, well, why not? I feel that healthy debate - civilly conducted - benefits this forum and benefits our understanding of SN. niminy I would love to engage in a debate about life chances for disabled children (who I feel are probably among the most disadvantaged people in the world)! I would disagree with you, but that is ok!

I second what Silverfrog said. My priority is to my children and what is best to help and support them.

silverfrogI am not sure that I am an expert on my child to the exclusion of all other opinions. I am not with him at school,at outside activities etc. When parents claim to be the only expert on their child it makes me wonder-am I inadequate, or simply realistic.

This thread is in danger of falling into the trap that the OP wanted people to avoid.

ive found it lovely on here but in primary ed they jump down your throat if they dont agree they dont seem to think your alowed a differing opinionor maybe they dont like new posters?

starterfor10: I did not say I was the expert to the exclusion of all others.

my dd1 is only 6. she has been in the right school, with the right support, for over a year now.

before that, she was with me the majority of the time. I was there at activities she did, and I was there when she was learning (we ran a home programme). I knew better than anyone else involved in her care how she would react at any given time, in any given situation.

in our situation, I did know better than the SALT who said she should be using PECS - the SALT ignored dd1 asking several different ways verbally, because she wanted her to do a PECS exchange. honestly, what was the point? dd1 was asking verbally for what the SALT wanted her to exchange for (and could ask verbally for any number of things)

I also knew better than the professionals who said that dd1 was an elective mute (she isn't), and that she might not ever speak at school - her current school would beg to differ, I know! I also refused to accept (as I was told I should) that dd1 might not ever learn at school (was told this by the head of the supposedly excellent ASD pre-school) - it wans't that the school was unable to teach her, oh no. it was that dd1 was unable to learn . dd1 is now at a school where she is learnign well, and is progressing well.

I certainly knew my dd1 better than the dietician who said that she did not have the intolerances she does have, and that faddy diets would only serve to make her fussier. dd1 is now healthy, eats well (she always did, so no idea why the dietician thought she was fussy in the first place!), and crucially, can actually digest what she eats.

the teachers who were trying their best, but their actions ended up scaring dd1? well, I think I probably knew dd1 better than them too. once they listened to what I was trying to tell them, the whole matter was sorted out in 5 minutes flat. but they created an issue which threatened to destroy dd1's happiness.

conversely, I have also met professionals who were interestd in dd1. who took the time to think about what she was doing, and why, rather than just trotting out the same old lines again and again (did they really htink I hadn't tried that?)

I am perfectly realistic about my dd, and her strengths and weaknesses.

I am also perfectly willing to listen to, and accept help form professionals who are willing to work as part of our team.

but I will not be fobbed off by people who do not know dd1 well enough to make the generalisations they do about her care. and I will not accept substandard advice or care for her.

if that makes professionals feel inadequate, well - that's their problem tbh.

Ellen - perhaps starting a thread stating how unsupportive the board is, is bound to rake bad feeling up? I don't feel it was necessary

I have to say I'm with silverfrog on the 'proffesionals bit'

I have met some shocking ones and some fantastic ones. I have met a lot of would be great, but haven't got the time and their workload is huge ones.

30 mins to an hour with ds will show you a good amount of who he is on the surface. But I do need them to listen to me ( or have the time to do so) when I am telling them about the slightly deeper stuff.

If I had a pound for everytime I have uttered the words " yes, I am aware ds does this, I have tried to tell you, have you read his files"

I would be a rich woman.

And I actually don't want ds to have any of these issues for professionals to agree with, so it's not my wants I'm concerned with, yet he needs the right support to stand a fighting chance.

If I vent on here about a meeting that was a waste of time, it doesn't mean I think all professionals are awful. However just because someone has qualified in an area, it doesn't mean they are going to be brilliant.

Re professionals - a dr friend of mine that works in a London Hospital says that if he is ever unwell, not to send him there as his chances of getting out again would be slim. 'Professionals' don't even respect each other. As the old saying goes, 'respect needs to be earned' - and i agree with that. If a professional does a good job (in my case SALT, OT and Physio, current school) they earn my respect. If they do a substandard/poor job - which can include mis-diagnosis, non committal poorly worded reports, lack of and poor communication - then they do not get the same respect.
I'm with Triggles re the original post. Sometimes i feel that i have nothing useful to add, or that has already been said and that just sending empathy would seem trite.

What a shame you feel like this. I have got more information, advice, support and understanding from this board in the past year than I have got from any professionals, family or friends.

If it wasn't for posters on this board I would have never started ABA (which has been the best thing I could have done for ds), would have been clueless about the SENCOP (not one single professional has ever even mentioned its existance to me), not known I could claim DLA, and would have been floundering and even more anxious about the SA process, and just wouldn't have been aware of how the sen system works at all. Several posters have taken time to help me personally, giving me invaluable information for which I am deeply grateful.

And not to mention the support and sharing of information on the day-to-day trials that are part of being a mother of a sn child.

I also lurked here for a long, long time before starting to post, and learnt a huge amount.

Maybe I've missed something (obviously aware some long-time posters have left, though some are back ) but it seems as supportive and informative to me as it ever did.

Now that's a lovely post.
Although I sometimes need a breather, being a professional and all that. Because that can become depressing reading after a while.
coppertop, bigcar and EllenJane1, my DS finishes Y11 in a few months and heads off to college. His MS secondary have been fantastic, inclusive and excellent at communication.
So Don't Panic Yet!

I'm learning the SEN process the hard way, following the permanent exclusion of my son. He's only 6.

Just today I've had a meeting I don't undersatnd the implications of, yet surmise they are important. Yet again the professionals didn't bother to explain the rationale or process behnd choices they've made for my child.

I've also had someone threaten to hit my child (she meant it too) in what I thought would be a quiet & quick trip to Lidls (I picked the quietest time of day). I am also having to run the gauntlet of being my neighborhood's 9 day wonder as gossip fodder. Putting the bin out has gone from a simple chore to an endurance test.

I'm totally horrified by the actions of a couple of professionals he's come into contact with, yet really impressed by others.

Via Mumsnet I've come across a couple of treatments that may really help my chid, and even more importantly how to access them! I can't thank these mumsnetter's enough, and hope they understand just how much I appreciate their advice. Finally a chink of light at what has been a looong 2.5 years for DS & I.

I'm a newbie, but if I can ever pay it forward by giving some other despairing Mum that tiny clink of hope for the future then I will as the official channels provide no comfort at all.

Just wanted to say that I find this board very supportive. There is a warms, help and knowledge/insight. Something for everyone and for every situation IMO. I don't see short or unanswered threads like in other topics. This quality could be lost without the freedom of expression.

I also appreciated the input of the professionals in my thread, for which I am grateful.

This being said, IMO parents are the ultimate judges of what is in the best interest of their children. Professional competence is best when it serves the child and not the concerns of the system.

Goblin, you being a professional and all that, can I just say that I honestly would be so pleased if it were you working with ds.

( and I'll pass a glass of red over for the exam end of year stuff, ds1s last exam is on 22nd June! )