How much of YOU is left??

[lisad123wantsherquoteinDM]

I have attended a few SN coffee mornings with some lovely ladies but one thing has hit me, and i dont mean this to sound horrible at all, but some of the mums I have met, their whole life is about their child, every word out of their mouths is SN and I just dont know what to think.

Is this what happens over time? Will this be me in a few years? I guess I was just a little worried for these lovely ladies, and would quite like to get to know "them", not their childs SN.

Does this make sense? Is this because Im new to this and just dont get it yet? Is this what the always fighting does?

Hope I havent offended anyone, especially as you ladies have bene such a great support.

It CAN happen, I know people very much like this Lisa, but you know that I am not like this. Been on this road for 10 years now.
I have refused to discuss my son's CP on a night out to the pub with a group of ladies from SN group, as I was being me, not 'Ds1 and DD1's mum, the one with the kids with CP' just me, M who likes a night out, enjoys having a laugh.

Hmm, it's a tough one to answer, really and depends on how things are going at any given point in time.

For example, if I am finding things hard with dd and am struggling, I will usually talk to a friend whose dc also has SN. However, I almost never discuss dd with any friends whose dc are NT, mainly because it takes too much effort to go into all of the ins and outs. I do have lovely RL friends, but I try to keep things seperate IYKWIM.

How much I talk to dh and family members also depends on what's happening ie if dd has a run of appointments or if she is having more problems than normal, then I will rabbit on a lot more.

I think there are peaks and troughs. Sometimes, dd's AS seems all-consuming and it's all I can think about. Other times, other things take precedence.

I think you have mums with NT kids who have no conversation unless its about their kids.I think its a personality thing. I try really hard to keep my own identity especially on nights out. (different calling up a friend for a chat/moan).

Plus I get all my moaning done on this board!
Have just read that and it makes no sense at all. Ah well, blame the wine!

i gave up on sn coffee mornings.
I remember one it was awful, it was like a competion to see who had the worst birth(I lost) whose child fitted the longest(i lost) whose was in hospital the longest (I lost)
so now I do one to one, that way we do the sn stuff and then the gossip
if I am on a meet up, I may mention dd, you know during the how is she bit, then I would rather talk about the good looking waiter or what wine to get

oh dear, I am exactly like that but I was hoping it was just the initial stages and it would wear off and I would eventually go back to being me! In fact I find it so consuming I often find it hard to talk about my NT kids because I feel I have so little to say about them, when I used to be able to talk about them all the time. But now their stuff seems so trivial in comparison. I find it really hard to relate to my NT friends parents as I feel my life has just totally gone off on a different track. I was hoping I would return to an even keel eventually! But I am really conscious my current preoccupation is not healthy, or fair on my other kids.

I have met up with many other mums of sn children over the years and built up some good friendships

on our rare nights out we v rarely talk about our children, sn or not. Maybe the briefest of how's ... catch up and then onto drunken nonsense, dress appreciation, singing and dancing

doesn't mean we are not there for each other to moan / rant / vent etc. But that tends to be more phonecalls

dunno - maybe coffee morning type thing is more focussed on children - less distractions like on night out, more awkwardness. Also - if you don't know the people already then that is yr commonality innit? Like when I meet people who also have child with sn we tend to talk stuff related to that. They might not be too interested in my continued penchance for riot grrl

I guess I just feel a little that these wonderful ladies who i have met 4 times now, I know their first names, their childrens names, what schools their at, what sort of support they have, what level of ASD, if they have statements and IEPs, BUT I dont know their DH names, what they like to do in spare time, if they take tea or coffee.

Dont get me wrong, my life is pretty full of ASD right now with DD1 and DD2, but im also mum, me, a wife, a friend, a relation and a worker and would like to know what other things these ladies are. maybe I should just see how next few meetings go.

oh lisa123 you'd have know me dh's name, as well as my boss, my mum, various mates, biscuit preference all in the first hour or so of being around me

hope the next few meetings go better. What happens when you start talking about other stuff?.. ask em about favourite books or films. If it goes all slaughtered lamb never go back!

I havent had a chance to ask about other stuff, there is always someone talking about asd, or their little girl. They have been a wonderful support, and so helpful, but im not sure its me.

I realised today that I had gone too far the other way, though, when I inadvertantly told one of my RL friends on the phone how well my school meeting for DD had gone, and when I mentioned about DD being asd, she said " I knew she had some difficulties, but I didn't know she was asd". I didn't realise that it hadn't 'come up' in conversation when I've known her for nearly 7 years! . I just natter to her about how the DC's are winding me up/have said something funny/whether or not we'd like to be locked in a room with David Tennant.....

There's nothing left of me from the pre-dx days. the whole experience has changed me in a way I really don't like.

I'm so assertive that my previous me would be horrified to see how I've become.

You have to prepare yourself for ongoing battles at every stage of your child's life - junior school, transition to secondary, FE, Uni etc. You may have brilliant SEN in junior but what happens at Senior school? Then it all changes again when they become 16. You need to be prepared for all the 'benefits' battles too.

I have spells when getting what son needs can take every momment of my spare time in the evening for weeks - such as when DLA renewal is necessary etc, when I've been hammering the keyboard at 2am! many evenings.

Then there are 'quiet' periods when maybe just a couple of phone calls per week are needed.

I don't mix with other parents with similar children - I too find them too preoccupied with their own battles. I 'unwind' by having a very demanding and stressful job and by disappearing on holiday (on my own) at every opportunity - to recharge the batteries.

DS is now 21 and I've been at this for decades and there is no end in sight. I had hoped there woudl be but i now realise there will never be.

It does get easier as you become less afraid to challenge people to get what he needs and know what strings to pull to achieve it i.e. complaints / Councillors / MPs.

But be under no illusion - unless SEN support changes dramatically in the next few years you too will spend an inordinate amount of your time 'supporting' your child and fighting his / her battles.

Sorry to be gloomy - that's just how it is.

How can there be a 'me' that is separate? My life changed completely when DD1 was identified as having SNs. I have nothing in common with my lovely friends who had children at the same time as me.

right now i admit there is not a lot of me left , but thats not just down to ds , its more situation am in at the moment.

But i have couple of friends who are therw when times are tough and can moan to , but we also chat about normal stuff and have a laugh.

sn groups sometimes ar emore of achance to compare and pick others brains maybe thats why so child focussed , but saying that since ds does not fit in to one box or another we tend not to go since they seems to be a rank and a like of slotting into boxes

surely it's a bit like going to M & T groups the first few times, that all you have in commmon are the kids, so it's only natural chit-chat is kid based. Also bearing in mind like WetAugust says the amount of anxiety/effort expended in sorting out education etc, it's only natural kiddie talk will be on top of the agenda.

Like lou, I feel that things changed completely with DS having SNs. However being a bit of a depressive type, I'm sure I would have found something else to drive myself mad about even if DS had been NT, so I don't feel that I would have been a lot happier.

An SN coffee morning must surely be initially about SN? That is the thing that you all have in common and what gets you there in the first place. After a while, you will probably find the mums open up and will talk about other things in their lives, especially if you ask them.

What I find difficult is when people go on and on about their own child/difficulties and don't ask about yours, as if you are their counsellor rather than a parent in exactly the same position. It is often a competition, but I suppose these are often people who have a high level of unmet needs and give them the chance to let it all spill out, they naturally will.

I am lucky enough to have found a group (far too late unfortunately) who find a balance and have a belly laugh about how bizarre and shit our lives can be. It's very un-pc and a scream. Can't talk to NT parents in detail about DS1 - they don't ever get it

Comes and goes a bit ime, but then my dcs have fairly mild disabilities compared to some, so I may not be representative. Haven't been to any RL SN groups; Mumsnet does that for me. Have given up on the support forum that is specifically for dcs SN, as I find it is too exclusively about that; my life needs to be about other things too.

For me, it's more that my life is in compartments. At work, I talk about work; at home I talk about dcs. The kind of friends I have made locally won't want to hear about my work, the kind of friends I have at work do ask about dcs, but very much from an outsider's pov.

I feel like it depends on what state of crisis things are in - a bit like our government security lights system.

Sometimes we go through a period of amber, where things are ticking along nicely and I have time not to just be dd2's mum.

We get periods of red lights when there's a lots of hospital stuff, illness, or school stress. Then I become a total sn/disability-nut.

I don't think we have green times here

I'm sure its very boring for RL non-sn friends, but the ones that are TRUE friends are very understanding and helpful.

I hear what you say Lisa. I'm a bit like totalchaos, save I don't do depression, more anxiety.

I felt just the same when 9 months pregant. I used to ask everyon else "What do you do?" and they stared at me as if I was mad!

This is a really good discussion topic - I've come full circle on this one. When I was first worried about ds it was all-consuming. I worried that he'd have severe ASD, never speak, require lifelong care etc. Now he's improved to such an extent I feel more positive about the future, even though his language is still severely disordered and we have a long way to go. The arrival of ds2 (who seems very much NT so far) was a real comfort, watching him hit his milestones and hear his language develop has been lovely.

The downside is the breakdown of my marriage. H could never accept why I was so very worried in the initial stages when ds seemed to regress, and this eventually split us up late last year. Having someone to share and understand the worry makes so much difference. Strangely, going through divorce actually pales in comparison to the hideousness of watching ds regress. Never underestimate the stress of having a child with difficulties.

I always struggled with SN meetings for many reasons - ultimately I found them really depressing places to be. I needed to be surrounded with positivity when I was so worried about ds, and those meetings brought me no comfort. At the first one, I remember someone saying to me that my ds would never be invited to parties, and I should get used to that early on. 2 years on he's at a birthday today, and has another tomorrow, so they were clearly wrong on that score..

As for me, I see a lot of my friends, do book clubs and go running. I rarely discuss ds other than with friends who understand the condition. There are situations where things are harder, but having 2 small dc's does tend to restrict things anyway, so at the moment my life doesn't seem too vastly different from others in many ways.

I guess i was shocked when i was told that girls with ASD are high risk for depression, eating disorders and killing themselves not what you want to hear when your starting out, true or not.

I guess i was exspecting to make friends with people in the same situation so they would have more understanding, but still be me, but i guess i was under the wrong impression. Its clearly a group for just gaining support for any issues and discussing asd type things, not a friends things.

Will see how we go but maybe its just not for me. I love this forum and get loads of help here, but love the fact none of you know me (apart from my sisters and personal clown) but thats it.