Right. I have a question for you all.

[tattoosarenotallowed]

I have no direct experience of SN. None. Nada. Zilch.

As a non-SN experienced person, what are the three things that I could do/change in my day to day life that you would most appreciate?

(off the back of my chat thread where I know I used a wrong term for example)

(I hope I don't sound patronising)

[tattoosarenotallowed]

I don't even know what to say. I'm just SIGH. It shouldn't be like this for you and your children. It isn't right. Or fair. Or. Or. Or.

[Bluebirdonmyshoulder]

Firstly thank you very very much for even asking the question!

I'm going to make your life harder now by giving some different answers.

With the greatest of respect to the other posters who've said don't feel sorry for them or say 'how awful', I've actually found it wonderfully helpful when my closest friends just came out and said how shit it was when we told them about bluechick's dx. It made me feel that they really felt what we were going through and were right there with us.

I didn't in any way take it that they felt bluechick was somehow sub-standard although I suppose one could take it that way from a complete stranger. Obviously I know the kind of people they are and so I was able to take their reaction as concern and an acknowledgement of how devastated and worried we must be which we were.

I suppose what I'm saying is take your cue from the way the person tells you. Our emotions are all over the place and we have down days and up days. We also have nightmares about the future, especially when we're not around anymore, and for that reason alone, YES, if I could wave a wand and make bluechick 'typical' then I would.

Bluechick is only 6 months and so I'm new to the SN world and I certainly don't wish to offend any of the other posters. I just wanted to give my view. I love bluechick to the ends of the earth and think she's just lovely in every way. But yes, I'm still devastated and scared for her.

I suppose I'm saying my three things are -

Please don't assume we're all in the same place emotionally. We're still all individuals.

Please be friendly to us, I certainly need it.

Please include children with special needs in all the things NT children take for granted.

And please if you ever know someone reeling from a dx, ask them how they're doing. Don't assume they want to be left alone.

That was 4 sorry!

And again, thank you for caring enough to ask.

[silverfrog]

oh agree, bluebird - my best friend has told me on occasion that she doesn't know how she'd cope with all the crap we've had with dd1. but then, she has known me for 25 years, and properly sees (and hears!) about all of that crap! I don't want the cocked-head, misty-eyed, 'oh, god only gives special children to special parents' nonsense.

but yes, sometimes, someone agreeing with you that life is shit at the moment, can be as good a distractor as anything else. I think the difference is the acknowledgement that this, right now is shit, rather than 'all of your life must be shit' that you get from relative strangers somtimes, iyswim?

[devientenigma]

For me, I am stuck at home with DS age 12 24/7, he can't access much due to his needs, nit even school. The profs are at a loss with how to help. However it's a very isolating world with DS and a laptop all day.

I would really appreciate a friend, someone to chat to, about anything. Someone to help DS and I try to access things. (DS is 2:1) It would be nice for someone to ring and ask if there is anything I need, milk, bread.......often run out, as by the time the end of the day comes we are too tired to even nip out. DS is 24 hour supervision. DH works a hard physical manual job and is up through the night with DS. It would be nice to get 10 mins with hubby alone.

[devientenigma]

apologies if that sounds sad, but when you've been stuck like this for years it becomes sad and lonely.

[Bluebirdonmyshoulder]

So sorry to hear that dev. Whereabouts in the country are you? (Don't answer if you don't want to obv!)

[devientenigma]

I can't find the thread in chat, can someone linky please, I want to await the bun fight, it'll be the only decent discussion I would of had today

[tattoosarenotallowed]

www.mumsnet.com/Talk/_chat/a1671643-What-should-we-do-this-is-sensitive-and-we-have-no-wish-to-offend-Or-be-disablist#36942696

Here you go

I was actually really trying to be sensitive. Which got taken the wrong way.

Thank you all for your comments I promise I am reading and taking them on board.

[tattoosarenotallowed]

www.mumsnet.com/Talk/_chat/a1671643-What-should-we-do-this-is-sensitive-and-we-have-no-wish-to-offend-Or-be-disablist#36942696

woops [bluah]

[devientenigma]

Thanks tat

I know you are genuinely taking an interest, otherwise you wouldn't of ventured here alone

Glad your taking the comments on board.

[tattoosarenotallowed]

Woops again.

[tattoosarenotallowed]

The whole thing has just made me think. And the last thing I'd want to do would be patronise or offend or be horrible or any of the other stuff that has happened to you all. It's just disgusting.

[devientenigma]

tat can you linky the thread in special needs also please

[tattoosarenotallowed]

HQ were on the gin last night and deleted the wrong thread - they deleted the one in special needs not the one in chat.

[StarlightMcKenzie]

TBH, it is just nice to have a visitor here once in a while.

This board is hidden from most so it takes effort to visit, and usually our visitors seek it out because they have an axe to grind rather than offer support.

[tattoosarenotallowed]

Well I hope you tidied up for me coming and where's my ???

Seriously though, thank you all for understanding my hamfisted attempts at sympathy. And if I could I'd babysit for any of you in a heartbeat. And supply coffee and cake and wine. I take and have taken so so much for granted.

[StarlightMcKenzie]

In response to silverfrogs post, I got impatient with a couple of family members when they tutted and gave looks at me to discover I was pregant with no.3 when ds was disabled, as if it was really irresponsible.

I myself told them that I was simply having a replacement for the 'faulty one'.
Idiots. My 'faulty one' is my light.

[devientenigma]

oh dear, was curious to see the comments, did you get some good advice?

At the end of the day when special needs are involved we do put our other kids in compromising situations. This always makes me think how disadvantaged my other kids have been, especially my DD closest to my DS. We all also know what they are capable of. Still doesn't make it right or wrong, just shows help is needed x

[StarlightMcKenzie]

If I can just illumiate you further. You may or may not be surprised to know that having a child with a disability is a shock, but not half the shock you get when you then have to engage with 'services'.

Oh my word!!!!!!!

[hazeyjane]

My 2 would be

• If someone tells you their child is developmentally delayed, don't try to offer support in the form of -
  

'Einstein didn't talk until he was 4!!!!!'
'Boys are always a bit more lazy, he'll get there in his own time...'

• before you judge a - bigger child in a pushchair, a screaming child in a supermarket, a child making noise or mess or eating their own food in a restaurant (or any number of potential AIBU scenarios) bear in mind that these things may be more difficult if a child has sn.

[signandsmile]

I think everyone else has made the comments I would want to,,, but I just wanted to echo those who have said actually if you are interested and over here asking then you are likely not to go too far wrong... and thank you

[StarlightMcKenzie]

And the best thing that has ever been said to me in difficult moment has been 'what can I do?'

Usually it is something as simple as saving my space in a queue or guarding my shopping or holding my ds' pram still.

[Bluebirdonmyshoulder]

Yes yes yes to the 'he / she will get there in their own time' comment. It's not reassuring, it suggests that the person saying it hasn't taken on board the implications of your DC's diagnosis.

She is NOT simply doing things at her own pace, she has a chromosome disorder. I'm looking at you MIL.

[tattoosarenotallowed]

Well, instead of spending my evening tidying up, I have been skim reading the some of the other threads in here. I am just more and more and more shocked - the more I read the worse it gets.

Oh and can I be a honky person? If you'll allow a non-SN parent to honk I'd be very proud to.