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SN children

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

So they're all off for xmas and meanwhile my DC carries on suffering.

53 replies

LetZygonsbeZygons · 28/12/2013 18:25

yes, council services. social services/CAMHS/etc etc etc. and 'emergency' numbers they tell you to 'hang in there' till 2nd Jan.

yes, everyone there deserves time off for hols but those of us 24/7 caring for sn DCs NEVER get a minute off.

(ive even been staring at a bottle of pills today, im at the end of my tether. )

not DCS fault at all, she cant help it, her meltdowns/anxieties/cant sleep in her room as the walls are dripping with moisture and council repairs are shut over xmas, so out of her normality and in my room with me where in her frustration sheds punching and kicking me.

even took her to A & E in desperation (and Im disabled and find it difficult to get out) only to sit there for 2 hours while drunk people were treated for being drunk and we had to leave in the end as DC was having kittens waiting there with all the noise and STILL no one would see her, even though they could see she was having a fit.

and all the xmas kuffufle and being out of routine and NO ONE to help at all.

just had to unburden. DCs worked herself into a trance and is sitting on couch behind me staring into space.

OP posts:
AliceinWinterWonderland · 30/12/2013 21:07

Zygon - don't try to fit it into a dx box, it's not important what her dx is. If she's seen the OT and these wet walls are causing distress (which they are) and the noise is causing distress ( which you said it is), then ASK them to help get it sorted. The worst they can do is say no. It doesn't matter what her dx is - honestly, DS1 didn't have a diagnosis for ages, and the OT was still stepping in to help- she pushed the council to do a number of things in our house. But I had to ask her - once I asked, she was happy to help. But you have to ask.

ouryve · 30/12/2013 21:19

If CAMHS are giving you the runaround, you can get help to get redress via PALS. 12 is definitely not too old. The majority of other young people we meet in the waiting room at ours are teens.

Flappingandflying · 31/12/2013 17:43

If your child has a formal, written diagnosis of autism plus the asthma then she should get DLA. My son did at middle rate for both elements and I didn't have any night waking. The NAS have a guide on filling it out. Also the NAS, from memory, have an advocacy service and that might help you put across your daughter's needs. I think you need to list what you want SS to do and be realistic and clear as to what is feasible and realistic for them. Have they offered you alternatives or things in the past that for whatever reason you have turned down. I do find these meetings wearying and spent yesterday nearly crying trying to fill in yet another sodding benefits form which took all my intellect to complete (my asd son gave up!) I think you also need to keep a log of your neighbours' shenanigans so that you have evidence. Does your phone record?

You sound between a rock and a hard place and very frustrated but try, when dealing with SS, medics, educationalists, to batten this down and don't over exaggerate otherwise you will be treated as a loon. So don't say 'there's a waterfall of water and my child can't breath' Say 'the condensation is now so bad that the wall is permanently damp with trails of water to the floor requiring mopping. Due to DC medical needs she can't sleep in that room as it has set off her asthma and she has had a couple of bad attacks so she is having to share my bed. Unfortunately, due to her ASD, she cannot cope with this change and this has resulted in violent behaviour towards me at night. This situation has lasted over the Christmas period. I realise that services are stretched but her health and wellbeing is being jeopardised and I am deeply concerned about how to safeguard her health and emotional needs moving forward. Can you suggest solutions to this problem.'

Good luck and wishing you virtual hot chocolate and wine.

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