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SN children

Here are some suggested organisations that offer expert advice on special needs.

Original poster

OK nosey survey following on from another thread.

167 replies

gess · 23/09/2007 10:12

Do you like being told that parents of SN children are recipients of a 'special gift' or chosen by God because some higher power knew we could cope? (sorry expat pinched some of your wording there).

I'm interested to know what the figures are, I reckon its 50:50 love/loathe the comments. I'm in the loathe camp

OP posts:
Twiglett · 23/09/2007 20:19

Martianbishop

lourobert · 23/09/2007 20:21

Gess, Im glad you found someone that could really help you work it all through, something that was meaningful.....!! made alot of sense

Blandmum · 23/09/2007 20:21

PMSL! Not a happy little clam at all

onlyjoking9329 · 23/09/2007 20:22

i am seen as negative with the kids who will be fine when they are older
and my DH who like MBs DH has terminal cancer (steve has an incurable brain tumour)
i have lost count of the people who day that the radio & chemo will cure him, it won't but it makes them feel better to say so, it makes me feel worse cos i know that they don't really "get it" they think that i am making steve terminal because i am "negative" i am not negative just realistic. interestinglt the people who don't get the "autism" also don't get the "terminal"
i give them a wide berth.

lourobert · 23/09/2007 20:22

Being a clam wouldn't be that had though huh!

Original poster
gess · 23/09/2007 20:22

I think the mistake people make is that they think they can make it better. Of course they can't nothing they can say will make anything better. I like people to just ask me questions (not fire them obviously), but I find questions (without providing me with solutions) reassuring.

OP posts:
lourobert · 23/09/2007 20:23

bad

bullet123 · 23/09/2007 20:28

TotalChaos:

"and I really identify with the positive/negative issues too - childless friends are far better at respecting that if I am worried, it's not me choosing to be neurotic, that I may well have valid concerns."

For what it's worth I don't think you're being neurotic.
Also, does it upset you when I talk about the positive aspects of ASDs?

tibni · 23/09/2007 20:32

I've not seen the other thread; i'm responding to the title.

I love my severe ASD son with all my heart, I celebrate his smallest achievement and like others on here would do anything I could to help and support my child.

I also fear for his future, constantly feel guilty about being pulled in so many different directions, worry about my NT daughter, feel isolation and worry about when I am no longer here to care for him.

This is mine and many other peoples reality. Do I feel "special" - no! I'm doing what I can for my family. I put the "special gift" comment in the same box as "I don't know how you cope" - respond with a smile and move on!

TotalChaos · 23/09/2007 20:34

/hijack - bullet, no absolutely NOTHING you've said - you have been a marvellous support to me and my gripes for several months now!

Davros · 23/09/2007 20:51

Haven't read all of this but, Onlyjoking, why can't people grow up and learn to say "I'm sorry, can I help at all?" and mean it! I think I have learnt the value of just accepting what someone says about a situation without always offering solutions, let them have the problem fgs! And, of course, being helpful if possible.
I've had some friends tell us they had prayed for us which I found very touching as THEY are religious (although we are not) and a mum at DS's school who is very religious and accepts her son's ASD as "god's will", mind you she does have 5 NT children too although I'm not sure if that's helpful to her or not!!!

bullet123 · 23/09/2007 21:09

Davros, there are at least two mums on another parenting site I go on who are crying out for respite or more respite and the only thing stopping me from volunteering to do their shopping or housework or anythign that might help them out is the fact I live too far away.
I try and steer clear of giving too much advice for parents of older children who are severely on the spectrum (I have no experience at all of other special needs) as I think it would be rather like someone climbing Ben Nevis hollering advice to someone climbing Mount Everest.

onlyjoking9329 · 23/09/2007 21:35

The other one i get cross with is... God only gives us what we can cope with...
BOLLOCKS it ain't true

lou33 · 23/09/2007 21:46

i laughed

onlyjoking9329 · 23/09/2007 21:58

i often laugh it saves me punching people

lou33 · 23/09/2007 22:10

i prefer to save my nails and use a shovel

2shoes · 23/09/2007 22:15

lol

onlyjoking9329 · 23/09/2007 22:18

i don't know about you but i find that i always have my fist on me but never a shovel

lou33 · 23/09/2007 22:24

sorry , cant agree with you on that one

Saker · 23/09/2007 22:25

I agree so much with the thing about people trying to find solutions or taking the it will all be okay line. I really don't like it when people try to downplay what you say is a problem by suggesting it's quite typical of all children when you know it's not. For example if I say something about Ds1 and Ds2 not being able to play together because of Ds2's SN, then they might say "oh yes my two never get on that well" - I want to shout "it's not the same! it's not that my children don't get on well, it's that Ds2 cannot begin to understand Ds1's games and even if he could he hasn't the motor skills to join in without ruining them. They would love to play together but they just can't". I don't want sympathy but just acceptance that that is how it is for my children.

lou33 · 23/09/2007 22:28

yes, when i ahve been asked what is "wrong" with ds2, and try to explain, i have had people say "oh no, no he hasnt" like they are the bloody consultants fgs

bullet123 · 23/09/2007 22:31

Copied and pasted this from an email I sent earlier:

It is nice to hear people trying to be positive, but not at the expense of ignoring any difficulties your child might have. If your child needs help then they need help and what helps more is someone saying "this is what can be done" or "I'm listening, I may not be able to offer advice but I'll acknowledge you're worried."
People on the forums are understanding and helpful, but I've had some really crass comments about Ds1's special needs by people in real life. For example the other week I was saying to a woman at the NCT group that now Tom was nearly at school his differences were more apparent. She replied:
"Are you sure, because my friend's daughter has just been diagnosed with glue ear".
I was very diplomatic but what I wanted to say was:
"Does your friend's daughter have a habit of smearing excrement on herself and the surrounding furniture at times and has never let you know they need changing? Do they fail to respond to a simple question like "is that good?" or "what would you like for dinner?" Can she not yet give up the buggy for them as they get overwhelmed or tired or too distracted too frequently? Has she been told that as things stand they could not cope in mainstream?"

Davros · 23/09/2007 22:52

bullet, not sure what you don't like about my post? I meant to say something like what you have said in your last post:
"I'm listening, I may not be able to offer advice but I'll acknowledge you're worried."
I didn't mean to suggest that any of us should be trying to offer to help unless we really can.

onlyjoking9329 · 23/09/2007 22:58

Davros, yes the oi am sorry, can i help is preferable to the, oh don't worry he will be ok

bullet123 · 23/09/2007 22:59

"bullet, not sure what you don't like about my post? I meant to say something like what you have said in your last post:
"I'm listening, I may not be able to offer advice but I'll acknowledge you're worried."
I didn't mean to suggest that any of us should be trying to offer to help unless we really can."

No, there was NOWT in your post that was upsetting. It was very true and nowt wrong with it. I wasn't upset. I'm upset because I can't offer practical help to those I know who need it the most.