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.

Although, gluten free chip night does sound very useful. That must take a bit of doing, to get rid of all the batter remnants.

Sorry to hear about the funeral. Hope it goes well.

I'd rather spend time posting responses than engaging in this self-defeating argument.

We are not a clique but circumstances can make people feel excluded in life as we are not all equal. But we all have our own crap. Just join in. You are welcome whether you choose to believe it or not

I have felt very supported on this board. I have had messages of support when I felt shit and been given advice when I needed it. Some advice I follow, some I don't bother with, my life my choice.

I don't think anyone needs to justify their advice or posting style. This is the beauty of this board that most posters have their own field of 'expertise', for eg. IA will give excellent legal advice, lougle is able to quote SENCOP, moondog, starlight,bialy etc know their ABA stuff and mareeya gives excellent advice with a touch of humour which always puts a smile on my face. I think it is unfair to ask these posters to change their replies to generic one size fits all.

And I don't think chitchat is bad at all, some of the light bulb moments for me have happened when I have just been randomly talking to posters about stuff totally unrelated to the thread in question.

'I've never fitted in here. Your face really does have to fit. There is an undercurrent of judgmental - this is what I do, why don't you.'

That's odd, I've never felt like that.
DS doesn't have a statement and got the support he needed in secondary with only a minor amount of bolshieness on my part. He has no co-morbids other than the AS.
I've read a lot of ideas and suggestions and information, and then as the person who knows my child the best, I've selected what I wanted.
I've never felt judged here, only by others without experience of sn.
But I'm with Maryz, if you aren't enjoying the boards, there are many other sites out there to try where you might find the support you need.

maryz thank you for proving my point about chitchat. Nothing is irrelevant here, now I can add another place to my list to shop for gluten free stuff.

'I've never fitted in here. Your face really does have to fit. There is an undercurrent of judgmental - this is what I do, why don't you.'

Don't agree with this at all. I am a bloke posting in a predominantly female forum and I have still received advice and support when I have posted here. Dare I say it, I have even made some friends here.

'......undercurrent of judgmental...this is what I do' etc

It is such a passive aggressive response. Just because people have got different opinions doesn't mean they think you are wrong or that you are unwelcome.

That is just life. Some people let their babies cry to sleep, some don't. Some are on breast feeding crusade, some would never want to do it. Some people don't let their kids eat crisps, some don't have any choice do!

We are all different - people aren't mean or bad or judgmental because they assert their opinion.

Dev how are you doing? How is the ABA going?

We are doing well IA, we are on a break from ABA at the moment, but we start again next month with the new providers.

We had a really good week last month and I was thinking of you. it is such a shame that you ended up with the ABA consultant/TA you did because it could have been so different for you. We are fortunate in that sense that we have the luxury of changing people whenever we want within reason for now at least. This will be our third provider in just over a year and I have lost count of tutors now.

I have read loads and loads of threads on here and got lots of helpful info from them.

If I have something I need to check I actually come and search here before google!

There are lots of posters here who due to their battles, are very well informed and I'm grateful that they share that here.

I have directed posters over here from other topics knowing they will find what they need to know and I see lots of 'newbies' welcomed.

I post sometimes, but I know that on an advice basis there are others who are better placed than me to offer it.

Ive started a few threads and have been responded to helpfully and in a friendly way despite the fact that I don't post that much here.

Sometimes though, I avoid this section because I want to escape it all and because some threads are to close to home, so if Im struggling I find it hard to read about someone who's struggling too.

I also got fucked off with all the passive aggressive stuff, I have tried, but, yes it is very much like groundhog day, whatever anyone says it will be taken in a bad way.

I really can't cope with the negativity. My life has enough negativity.

I am stuck in a strange place where this board is concerned. I have 4 kids - 3 with SN. Two with ASD, one being non verbal the other being rather too verbal, two with a craniofacial syndrome.

I have dealt with;
Cleft palate speech articulation issues
Tracheostomy
Gastrostomy
Hearing impairment - BAHA, BTE, Bone Conduction hearing aids
Respiratory issues - Obstructive Sleep Apnoea, CPAP & sleep studies
Children going through multiple plastic surgeries
Aspergers
Autism
Dyslexia
Dyspraxia
Sleep issues

I have experience and knowledge in all of these fields, yet at times I feel that I have nothing to add as it feels like you are the only one dealing with nasty medical crap that no parent should be putting their child through.

'you are the only one dealing with nasty medical crap that no parent should be putting their child through.' Yes, I think we all feel like that at some point, some more than others. I am really in awe of you sally because you have so much knowledge about so many things and are always very positive.

Thank you zzzzz and Dev9Aug. That's very kind of you both. Maybe I am the only one dealing with some of this stuff, but I hope that one day I will be able to be here on MN for someone else who is in a similar situation to the one I was in when DD was tiny and fragile.

I do try to stay positive as I do genuinely believe that the day I can't find any humour in something, is the day I am beaten. It's not happened yet!

Some posters on MNSN will be better with hand holding and tea and sympathy. Others of us are more likely to offer practical solutions.

I know that I can often be guilty, depending on my own feelings and health and emotions at the time, to either be exceedingly practical to the point of what might seem like bluntness sometimes, and at other times to explain how I am affected by the same issue, which (I hope!) doesn't come across as 'me, me, me' (not the intention at all!), but more as a 'you are not alone even though I don't have a solution to this problem'.

I am a solutions based person. I'm a bit 'clunky' when it comes to trying to 'do' sympathy rather than solutions. I second guess myself when trying to show my sympathy at how hard a situation is, I worry and get nervous that I'm going to type (or say, in RL) something that offends or upsets.

So if I can't think of a solution, or haven't found one yet, then I will try to convey my hand-holding by trying to commiserate.

I feel like I'm not very helpful if I can't offer a solution tbh.

I have been here for far too long since 2004 under my original reg number and name. Back then I was mostly a lurker, with the odd aaaarrrrggghh help me! Post. Back then, DD was only 6/7yo. She's now 15yo.

The board has changed - it has got bigger, there's more combined experience held in this board than in most LEA's...

There are now people with DC's at all stages of life, from babies right up to adults. People who joined when I did, with 6yo's, are now looking at those same DC's turning 15 and heading ever closer to adulthood, and all the unknown that holds.

I think we all try to include and support newbies in the best ways we each can. It's sometimes hard though, 14 years down the line in my case, to remember just HOW much having a DC dxd with a disability can throw you for six and knock you over emotionally right at the start of the process.

I am VERY guilty of this. I was lost and floundering back when I was told by a SW when DD was just 7mo that she would never walk or talk, she would be a vegetable, and as I was only 16, I wouldn't be able to help her as much as she needed, and I should put her in care and forget about her, as I could easily have more DC's when I was older.

If I think back to how I felt that night, I can see how sometimes, all new posters want right away is someone to hold their hand and say that it might not be as bad as that, it's just a name for a problem, a worst case scenario that Dr. Google has thrown up and not a definite outcome.

Thing is, so far down the line, it's not always that easy to hold onto and remember that feeling, because you DO tend to get bogged down in the practicalities of this appt, that appt, this therapy, that school, this TA...

Maybe I should try to remember that when new posters are asking for help.

Stacy, - like the new name

And I DO struggle to engage with certain posters, even though I really want to, because I AM very 'clunky' when it comes to sympathy, and tbh I am in awe of how much some posters have to deal with, and feel like I am moaning about nothing because I can see in a second that the difficulties my DC's face are just not on the same page as what they are dealing with.

I feel like I have nothing useful to offer those posters - as I am a 'solutions' based type of person, and there sometimes just ISN'T a solution, it's not that I'm ignoring them, as much as I feel useless as in my OWN eyes, I can't help them because I don't have a solution to offer.

They MAY only be looking to let off steam, and get out their frustrations - but I've always been crap at that kind of thing!

Even in RL, if someone wants a Whinge, they don't usually go to me. They come to me if they want practical solutions to their problems.

I get frustrated because I feel that, as a regular poster, I get accused of being 'cliquey', when in reality, I'm just crap at sympathy and fluffiness.

I don't dress it up, I readily admit that that sort of thing isn't my strength, but for some people, that isn't hood enough - if you don't engage with them, you are being 'cliquey', if you do, and you are too blunt or practical (which is me all over, in RL too!), then you are told you are driving people away.

I think something that also needs to be remembered is that even those of us who have been treading this road for years, and may SEEM like we cope really well, and can give good practical advice etc. might actually be feeling VERY sensitive and wobbly too, even if it doesn't always show.

There are people on MNSN who gave said that they think I can cope really well with everything. If they saw me in tears in the kitchen at least twice a week, because I feel like I can't go on and it's too much for any one human to deal with.

Yes, I kick myself up the arse and carry on an hour or two later - because I have to - but it doesn't mean that I don't have times where I feel just as vulnerable as the newest poster on here just starting along the SN road IYSWIM.

I don't treat anyone any differently, I just don't have any relevant solutions for some posters. They are far more knowledgable than me, and it would be a 'teaching your granny to suck eggs' kind of thing.

Justa, I'm so glad life is for you out in nz, but I so wish nz was in the same time zone!

Thank you to everyone who has shared how they feel.

Sallybear, it must be tough to have life changing decision to make. I talways find your posts quite inspirational.

Dev, I'm glad that you are getting good results. If you feel able, I'd love to hear some nuggets of wisdom you pick up!

Merry, you're so right. I am also known for being straight speaking in RL, not to be confused with uncaring, but I tend to have very clear thinking process, not woolly fluffy bunnies.

Good to see you back, amberleaf.

Something I learned last night, do not scare the bejesus out of a 15month old baby with very obvious sensory issues just before his bedtime, he will thank you by screaming at the top of his lungs all night..

lougle I would love to tell you all about it, but it will be like teaching granny to suck eggs. Seriously though, even though we have been doing ABA for over a year, we found the biggest difference was when we truly started using a multidisciplinary approach. A decent SALT and an OT helped us understand ds1 more so we were able to build on that. Diet helped massively with everything as well and now we think we have found a decent ABA provider, we think finally we will be able to see his true potential and get somewhere. Anything else in particular you need to know, just ask away, I will happily tell you all I know.

Dev9 - I know that the chiropractor approach has helped DS4, did it make any difference to your DS1? We still go every quarter, and I know when he is ready as his old sleep and BM patterns make an unwelcome return after 10 weeks. I still think it works though.

Thanks lougle

I don't mind being told things I already know, tbh, Dev...there's always something new you can learn, or something that you hadn't considered. It's a bit like when I'm looking at the SEN CoP - a new poster's specific situation makes you read it in a new light, see emphasis that can be placed differently, nuances that are so easy to overlook.

We have such powerful resources, if we use them to their best potential.