dumb question.

[winestein]

This probably sounds a little odd, probably because it is, or I am, or something.

Whatever "special need" your child(ren) has, do you start to/did you once ever avoid parents of children without special needs? Are you/were you ever afraid that if they talk about a huge problem that is, in the whole scheme of things, so minor you might actually go bang?

How and when do you learn to cope?

yes and no
I did start to advoid the mum who told me how difficult her dh found her nt dd.... thought that was tactless.
but parents of nt children can give you some light relief at time

Ahhhh, 2shoes - how the devil are you? Afraid I have hidden the farmville application on FB so rarely see you around ;-)

When you very first found out, how did you cope? I realise it is a relatively long time ago, but do you remember?

I did for a long time but that was because of them judging me and my daughter. She is a large 3 yr old in nappies who drinks her milk from a bottle and is wearing school uniform. We got some awful looks from some of the other parents but now they know the score they seem to just accept it. That aside I see red when they moan about things that us as parents of special needs children would love to have instead of the battles and problems most of us face. My absolute most hated saying is " oh she doesnt look autistic"

Anita x

Good grief. I wonder what the perceived face of autism looks like?

winestein, for me, at first, I didn't feel the need to avoid anything or anyone. DD1 was 2.10 when we found out she had SNs. But over the last year and a quarter, I have seen children I would have considered her friends growing up, outstripping her; younger peers overtaking her; her younger sister beginning to overtake her. And it hurts.

I have seasons that are ok, then times when it really isn't. I cried as I drove to visit a friend's new home this week, because I passed the MS school I had assumed DD1 would attend pretty much since she was born, where all of my friends send their DC, where her cousin goes. She will be going to special school (a bit of a shock because we were told MS by profs, but LA decided SS).

I find that I don't have much in common with all my friends in that sense. It gets a bit old having to explain the latest appointment, statementing deadline, complication....

And there are times when they tell their latest trauma with their DC and I think "what would you know?"

But, I think mainly I am knackered. I have DD1 who is 4.2, then two other girls of 2.5 & 0.9. Things always seem worse when sitting up straight is an effort

I used to avoid toddler groups or any social settings really that had other children before DS2 was dx because I didn't have a reason for his behaviour, an was sick and tired of the looks and tuts and me leaving in tears with a screaming child. I still avoid certain social settings, tend to stick to ones I know will have other SN children (local SN toy library for example) or where my friends who have no qualms about ds2s quirkiness will be.

IME - I found it very difficult making new "mummy" friends once DS's SN became apparent. But with existing friends it would have been cutting off my nose to spite my face to avoid them, and somehow the comparisons didn't seem so acute if it was kids I knew well from birth. It is irritating though when people seem to create problems out of thin air about their kids.

In terms of learning to cope - time, time and getting schooling on an even keel helps. oh and if you do non-kid related stuff with adults.

I agree - it's really difficult. And in my experience, there are days when I can cope calmly with whatever life has to offer, and days when things are just intolerable. And chief among the things that are intolerable are people with trivial concerns. Must confess that there are times when I take it out on MN - when people post about what seem to me to be dumb concerns.

I don't know what the 'secret' is to coping. I try to keep perspective, and in truth I find it easier than I used to to listen sympathetically while other people talk about the things that are bothering them. Perhaps it's just getting more used to the situation we find ourselves in, and becoming more confident in our ability to cope - I don't know. Certainly I find life easier to handle on days when I feel that I'm being heard by social services, SEN, etc and progress is being made, and when DD2 is happy, even if she's not 'doing' any more than on other days. (My DD2 is 2.5 and severely disabled with Rett syndrome.)

Does that make sense?

Thanks ladies. I know what you mean about it hurting, Lou. I feel your pain.

5inthebed - I feel for you. Some friends of mine have ASD kids and I've always been happy to have them around and explain the best I can to my DS why they behave the way the sometimes do (probably comes naturally to me as I know my DS has some spectrum behaviours!!). I'm not a fan of the tutting circles as I have always thought that you never actually know what's behind certain behaviours.

TC - I do do stuff non kid related, so is it really just time? I hope so. My head is in a whirl and yet I am in a dark and quiet place.

winestein wow going back to the beginning, well badly, i remember, staring out of the window at the little girl next door(a year older than dd) and thinking omg dd will never do that...... but tbh I didn't advoid other parents, they seemed to advoid me. I don't think they knew how to deal with it iynwim.
but I was luky in a odd way, my oldest frined has a child(now all grown up) with no dx but severe sn. so I spent many a night on the phone to her.

Oh yes - that makes a lot of sense Wispa. I'm just trying to find perspective at the moment. Some days I feel it with my fingertips and then some days I get a sense of injustice and lose it totally.

There was a few friends with nt kids I avoided when my ds was a baby....however I have no friends now, even friends with sn kids. They have all abandoned me as they can't cope with my ds issues.

That must have been really hard 2shoes. Parenting baptism by fire, as the MNet saying goes. In some ways I feel like I am staring out of a window now - like I can't actually touch anything that I see.

I'm so sorry to hear that DevientE. That's awful. Have you found support forums?

Winestein, every school holiday I sit and chat on facebook. I leave posts on here also. I know I sound sad and seem like I have no friends but I do have plenty happy to chat on the internet and on the phone. Though it would be nice to be ableto take my kids out with a group. Thanks anyway. x

It doesn't sound like you're sad Devient - it sounds like a shame. I realise I am saying this and I have no idea what special needs your dc have but I have found a forum where I can talk about my DS - his condition is very rare for his age group and no one other than me has ever typed it's name here according to MN search. I feel very alone - although my son can generally get on well in social situations (aside from the odd spectrum meltdown).

Do you feel alone as your ds condition is rare??

i understand the feeling alone thing, i feel like that often on here and in rl, although, loads of people have a dc with cp on here, no one has one like dd

I would be pretty lonely, if I did.

I know where your coming from with that 2shoes, there are plenty of people with a child with down syndrome but no one has one like my son. I am even the outsider of the down syndrome assosiation local support group!!! and I know I have spelt that wrong!!

Sort of, yes. It feels like no-one would understand. Partly because I don't fully understand it. I also feel alone because I feel like I can't talk to anyone because no one knows what it is or because it's a condition that very very few can relate to.

When you talk to people could you maybe expand on what the condition means for your ds so people may relate more. Maybe even make comparisons.

I see where you are coming from. I have no idea how that must feel (both Devient and 2shoes). Whilst I have no peers in the same situation (either real life or forum based) realise we are different as I can put my son with NT groups as things stand.

You could also look at it as we are all the same as we all feel alone!!!

I'm getting better at talking to people about it. It's just I see differences which are being created by it, and I am aware of the future potentials, which given the fact that up until 25 Nov 2009 my son appeared fine come as a horrible nightmarish shock.

I know I need perspective - I'm trying to find it and find the positive mental attitude I am going to need to give my son to get through his life.

I know there is worse - I really really do. I am just feeling really really low at the moment. I appreciate your time