fed up with parents of nt kids moaning

[sumum]

have seen thread on other board where parents are asking if they should be annoyed because their 5year old got level 2b in end of year report and seems to not listen. I mean really that is the level they should get at end of year 2 so why the worry. if my ds got that at seven I would be happy.

Also there was another thread with irrate mother that was upset her dc wasn't in the same class as her friend. How i wish that was all I had to worry about when it comes to class moves. Three meetings with school later and I am still worried how the transition will go in sept.

I know other parents worries are still worries to them but it just makes me and and a little

Fanjo her and my ds be right pair he is very vocal just not with proper words.

Not going post after this but ds2 eats 3 good meals a day plus is human dustbin but weighs in at 5 stone 4 and he is 5,10 .So I have asked how to get him eating more

think all reverlent to where we are with life in general and our worries

You know what- wrt to the not talking

a few eyars ds3 aged 4 could not talk

Now he talks literally every waking moment (that he is not having an absence) unless gued to the PC screen
And that is ahrd work too [blsuh]

theoretically I know it's not just me- it was enough for SSD to give a summer place fgs and we all know how they are

And we can only understand a bit of what he says

But sometimes you do want to bang your head against a wall LOL

And yet a few eyars ago i'd gladly ahve given anything for this

And now i'd give ther same for his speech to be intelligible and relevant

Funny huh?

And as for babybell and grapes- ah I remember ds1's phase of chicken skin, cabbage and wergthers PMSL

roundthebend are you on TTR? I have a few ideas from when the boys were small (0.4th centile for ds1) that may help? Don't want to hijack this thread.

yes im on there sancti as the fire bird.please any tips we already do the cream in everything but do think lot to do with his crohns

Oh FGS Greensleeves, read what has been said. It is entirely normal when you have a child with a severe disability, who will never live independently to feel jealous of others who have for all intents and purposes an easier path through life (at least at that moment). It's particularly common in the early days when the severity of a condition is just becoming apparent. When ds1 was 4 I could hardly bare to go into his mainstream school - seeing what should have been was one of the hardest things about mainstream - because the difference was for the first time utterly stark, for the first time it was visible. I felt sick seeing normal kids at the time. DS1 moving to an SLD school probably part saved my sanity.

It's not very nice - it's what I call the ugly side of having a severe or profoundly disabled child - but it's very common, especially if your child has a disability which means only a small part of normal life can be accessed. I remember when ds1 was 7 and we'd gone on holiday with ds2 and ds3 feeling as if I'd been kicked when I saw families of mum, dad plus 3 kids sitting down to a meal in a pub or restaurant as I knew we would never do that. I had to dive back to where we were staying to cry and get away from it.

Coming to terms with that sort of situation and being able to see a family sitting for a meal/listen to someone complaining about their toddler talking too much takes time - and it's something I have discussed with everyone I know in a similar situation to us. Most of us manage to navigate the grief and come out the other side without too much bitterness (providing people are sensitive when choosing their audience), but saying that someone shouldn't feel jealous of people with an easier time isn't that realistic.

Should I just jabber on about ds2 and expect my friend who lost a child the same age to just deal with it?

Yes I am self-involved, so shoot me for it. Sometimes when there is no light at the end of the tunnel its very difficult to think about other people and their problems but that is true of anyone.

fair enough, that was hastily posted and I apologise. No I wouldn't expect a friend who had lost a child to sit through trivial complaints about your child.

I am a bit raw on this one I think because ds1's transition/anxieties/difficulties are getting reasonable support from the school/paeds etc (not without a fair bit of jackbooting, but we are getting there)

while my NT ds2 is being completely overshadowed and ignored - our parents evening with his teacher (who taught ds1 last year) was a series of unfavourable comparisons and he is supposed to suck up whatever comes without any kind of transition at all - I am more concerned about his withdrawal and developing attitude problem than I am about ds1's more flamboyant and extreme but basically pretty predictable issues

Maybe it's because I have a fair amount of knowledge (not enough, obviously, I don't mean that) about AS children and transitions and issues, especially ds1 because I have studied it and been on courses about it and had mountains of advice from MN about it

but I have no fucking idea about parenting a normal, sensitive, ebullient but easily hurt little NT boy and people who are fascinated by the autistic one glaze over when I talk about ds2

and I have a friend with a very ill NT child who can't get any support because the problem is invisible and nobody professional seems to believe in it

but I mean what I say - I sincerely apologise for being unfair and hasty in what I posted.

I feel like an arsehole now actually, having calmed down

I wouldn't in a million years have gone onto a bereaved parents' thread with this title and posted the way I did

I am used to thinking about SN at ds1's level of SN - I didn't give myself time to think about people whose children have far more serious needs than my AS child

I really am sorry about that post, I will ask for it to be deleted

Thank you GS.

I honestly think that all of us recognise that others have difficulties don't have to be obviously huge to be relevant and troubling. Just sometimes because of issues in your own life it's difficult to be the audience. Sometimes it's difficult to be the overhearing audience, whether on here or in RL- although as pointed out on this thread that's your own problem and you have to find ways to deal with it -recognising it's a normal way to feel helps I think, as does time.

On other occasions people are just really insensitive - in an open mouthed 'did they just say that to me?/complain about that to me?' type way - people can be very crass- and in those situations I do think it's valid to point out you are the wrong audience.

I have a friend in an ongoing awful situation - so shockingly difficult I won't repeat it because it would identify her to anyone who knew her- but she has had friends complaining to her that they can't go on holiday this year etc etc - and properly complaining - being upset about it.

When it came to 11+/secondary transfer time we hid together from the world.

oh thank you for the apology not for asking for it to be deleted - we cross posted.

Greensleeves - please dont feel bad. you have apologised and I for one have accepted it.

FWIW I think what you are describing with your DS is very different to the topic that the OP was refering to. I really feel for you I hope the holidays give you a chance to make your DS feel much better, and the new school year brings a better teacher who sees him as an individual rather than an extension of his older brother.

Greensleeves i wouldn't worry about it, we all mispost or post in haste.
I often remember the anger i felt when a "friend" moaned to me about how difficult her dh found her dd to deal with!!(wtf she told me that for I do not know)
I offered to lend him dd for the day.
but her dd was difficult, bright youngest of 4 playing her parents.

(oh just a quick mention... TTR was mention earlier, it is a yahoo sn group. let me know if you want to join)

Greensleeves, I was also very worried about ds in the years when we were struggling with dd and there was just noone who had any energy left over for him. In fact, one HV suggested we should try to get him into the Young Carers programme (some hope!). Then he was diagnosed and dd really kicked off- she couldn't cope with the idea of that support being diverted. It is a difficult situation.

Are there any siblings groups in your area Greensleeves? I dont know where you are but we have a few round here that have been helpful to DS1. Its nice for him to talk to other people who have SN siblings and understand how hard it is.

i call them the lost years, ds really missed out.

oh heck don't divert the whole thread onto me and my big gob feet

I will check out sibling groups though, that might be nice for ds2 as he gets older

he is the one who bears the brunt of ds1's antics really

thanks for being tolerant

we never did siblings groups, were lucky to meet a couple of families with dc's dd's age and ds's
that really helped

Tolerance comes as part of the package

We do carve out time for ds2 and ds3 away from ds1. It works because ds1 benefits from it as well. Took a long time to organise but I think it really helps ds2 and ds3 to occasionally be able to go out to a pizza or the cinema and have their own space.

I don't have the problems of them sharing schools though- that must be quite tough- I think ds2 would have found it very hard as he gets a bit embarrassed when ds1 kicks off in front of his friends. Ds3 doesn't - he would just lamp anyone he thought was being mean to ds1

We cpuld do with access to sibs for ds2; his behaviour has gone through the floor and he has developed a few interesting tantrums himself. Had we not ahd ds1 we'd think he was very hard to deal with!.

What has helped though has been geting him into cubs; I feel a little abd but I emailed and explained what was happening and the fact that his social life is so limited, and they bumped him to the top of the list. He goes out camping with htem, has a sense of direction and feels part of something.

Would that work for you Greeny?

Nobody must feel they can't post in SN or anywhere on MN about anyhting that worries them. At school where ds3 is the most severe child they encounter (there is one other child from the SNU whose siblings go there but he's never actually on site) and we're going through everything I might feel a bit if someone complained about not being able toa fford Boden or summat (quite likely at our school LOL)- not dyspexia etc though becuase I have kinda established a Resistance stylee SEN parent help thing . But on something like MN where it's all visible then people have to elarn to take care of themselves and just close anything they can't handle.

Othwerwise you could get the very severely impaired kids with LD over one side, physically disabled in another place- maybe those of us with more than one disabled child could get a special comfy chair LOL. And that's crap; most of what we deal with- DLA, crap educational provision, worries about teh future are the same and a lot of the info we acquire is relevant to many others.

SN mumsnet has to be an all welcome we'll take your concerns seriosuly forum or it will rapidly become very pointless indeed.

Anyway, something else I've noticed over too many eyars on here is a path whereby people start out dealing with a DX or pre-DX< move on to specific issues and end up rarely posting about problems they ahve but offeringa dvice instead. Which is pretty fab but also shows what a process it all is.

With my teacher hat on I listen to a lot of parents and children whittering about stuff I don't see as a proper problem.
Sometimes I just want to yell 'Get a grip, a sense of perspective or just fuck off!'
I don't of course
But sometimes I think it.

Relatives are the same, my two are part of a cousin set of 14. Family chit chat about priorities can be stressful.

I think the physical side is very hard Riven, i have to lift DD a lot, she is 17kgs and it gets really painful and tiring, on top of everything else.