Today I told Social Services I couldn't cope

[ShinyHappySchmooo]

I can't believe I said that to Social Services!! That's not what I do! I said it the DS's paediatrican first.. at his appointment first thing this morning.. and after she'd spent an hour talking to us and watching DS wreck and then drench her office (those hospital taps!) and then physically attack DH and I. She said I must ask our social worker('s assistant) to come and visit us as she promised at the begninning of August.

Then she prescribed Melatonin (his already poor sleep pattern has gone to hell; we feel like death warmed up from new and worse sleep deprivation on top of "old" chronic sleep deprivation.) He's just had some and gone to bed.

We then took him to school and got dragged off by the SENCO who told us we looked "dreadful" (after I'd caked a shed load of makeup on on order not to!) and said we need to ask for more help (than the "6 hours daycare respite fortnightly - but isn't - and the six weekly overnighter which is about to be revoked because he won't sleep for her..)

So I rang when I got home. They are understaffed. The social worker's assistant is off sick and noone else can come. Was told that if I don't hear anything by end of next week (because they are so overworked that meesages are going unresponded to) then I should ring again.

Sigh. What's the point. There is nothing out there to help us anyway. Getting any respite was a three year battle. DH is desperate for more respite; I just think what's the point in trying to get him sent away more often.. that won't address his issues. But then there is no addressing his issues. We've tried.

At my dad's today I watched part of a video of him in his incubator in SCBU , fighting for his life. Felt so proud of him and full of love for him.. how clever we was to survive against the odds. Came home and hugged and kissed him. He hit my in the face and made it bleed.

Oh shiny, no real advice just anger - how can SServices just fob a parent off with staff shortages & sickness
Don't they realise how much courage & or desperation it takes for a parent to pick up the phone & ask for help.

Where are you, is there anything we can do to help?

Oh Shiny. and for you.

Whoever is responsible for those shortages needs a good kick up the @rse.

PS Why do those rooms always have those bl**dy sinks in? They're like child-magnets.

No advice but will be thinking of you. Just unbelievably awful.

oh no

I don't know what to say. Is there anyone else - like the GP/Paed who could make you a more urgent case with SS?

Oh Shiny, I'm so sorry, that sounds absolutely bloody miserable. It's my impression that SS essentially fob people off as much as they can, basically rationing care to those few who manage to fight on and on and on.

Shiny - I feel for you I really do.

I have been sat here racking my brains for ideas of help you could try and access but I am sure you know of/have tried everything so that's no help.

So I don't really know why I'm posting as no use at all.

Its really bloody hard and I wish you had more help. Not just respite but just help with dealing with it all.

sorry you are having a crap time with little sleep, phone SS and ask to speak to the duty social worker, you can't just hang around waiting, i am afraid that services have to be fought for, it took us ages to get services sorted out and things are still not really right, we have another meeting next week

It's cold comfort SHS but at least they have seen your ds acting like that - it has much more effect than us parents just saying how bad things can be.

Please please hassle SS for help. Ring every day and make a pain of yourself. I work for like a branch of them and people that make pains of themselves sometimes get help earlier than those of us that "queue" IYSWIM

Does your county have an Advocates society? This is a great way of getting help if you dont feel that you are getting listened to

Oh dear, what a terrible situation. I think it is important to be VERY clear with them about not being able to cope, its like filling in a sodding DLA form, anything woolly and they don't take it seriously. It sounds like you HAVE been clear with them now but I would also put it in writing, maybe start off with your original post here? How on earth can you get them to do more or something different if things aren't working? Link is no good if your child can't manage, or be managed, away from home. Isn't there anywhere else he could go for respite? We use an NAS school that is residential during the week so does respite at weekends and hols, its fantastic, DS wouldn't last 2 seconds in someone else's home and nor would they! Get as much as you can in writing from Paed, SENCo, GP as well as putting in writing yourself. Ask for another assessment as situation has deterioriated. All a bloody battle though

Thank you, you lovely people. You are helping. That's why I posted I suppose, just to whinge and know you would understand.

HITC, yes we've been to BIBIC (couldn't go this year, it clashed with Kids club and we had to send him to that!!).. has behavioural therapists round (she is good, but obsessed with communication cards.. which DS likes but it doesn't really change anything even when we stick to it to the letter), followed all the advice we can.

He used to be such a joy; he really did. For all his many and complex needs he really enriched our lives and know we spend all our time finding off blows. He can be kissing you one minute and dragging your hair out by the root the next. He gouges chunks out of DH's (bald!) head.. kicks the crap out of us when we're dressing him, hurts poor DD (only 18 months older than him and smaller framed) relentlessly even though she loves him to bits. With me has recently started grabbing a whole handful of breast and really squeezing and pinching. I always have bruises on my boobs now and up my arms. I look like a domestic violence victim. BF said to me the other day "you are going to have to stop him doing that; it can cause breast cancer...!"

I try not respond when it's me he's hurting as he seems to literally feed of the pained reactions his gets, but that makes no difference. He particularly does it when I'm wrestling him into his five point harness in the car because both my hands are occupied. The paediatrician pointed out a scratch down my face and said "did he do that?" I'd not even seen it! I tend not to notice the marks until someone else points them out.

MyMate we are in Kent and you are lovely for offering help but really there's little anyone can do. I don't even like to ask lovely BF and her DH anymore to babysit which we very occasionally did before (they are great with him; know all his drugs/needs) because last time they had him he smeared faeces at a play centre they took him to and other parents were horrible to them It's just not fair to inflict him on other people. Even the respite carer (v expereinced!) admits he is the hardest child she has and can only have him when her DH is present too.

Thanks for caring. I will stop whinging now. None of us have it easy and it's not fair to go on like this.

whinge away....

I haven't been on much over the past 18 months or so but I remember your posts about your ds from a few years ago. Must be very very tough that his behaviour has changed so much .

shiney
i feel so angry for you.
you need respite. I know it is hard asking for help. It took me ages to own up to ss. but you need breaks for you and dh to recharge your batteries.
I know that respite doesn't solve the problem but it does help with the coping.
As someone said insist on speaking to the duty sw. if they turn you down. tell them you want to go higher. and tell them every thing. (I had to tell ss my deepest secret) if they think there is a chance that you and dh will split up they will panic as they know one parent will need more help.
(sorry to waffle but feel so angry about the lack of help you are getting)

I can't advise, but just wanted to voice my support - your OP made me feel so sad for you. It was very brave of you to tell them you needed help. I hope you get the help you need - and are entitled to! - as a family. Hang in there. Greeny xx

I told them 2shoes that we are both on anti Ds (unthinkable to us a couple of years ago and we held off until this year; I GP strongly advised we take them) and we have nearly split up.. all stress/escapism related and had counselling and I think as a couple we're stronger than ever. But the stress now is so unrelenting. We live for the hours he is at schoo and bedtime.

HITC's mention of my posts of years ago made me look up this thread which I suddenly remembered posting on (ThomCat's thread about her lovely Lottie.) www.mumsnet.com/Talk?topicid=1373&threadid=63685#1420588 I feel so sad.. my post of 12/15 on the 10th says about DS "it really does sometimes seem that he was put on this earth just to LOVE everyone.. because he really does.. nobody is exempt from his affection "... and

this. "I feel everything you describe, regularly,.. sometimes its such a weird mixture of feelings that I can't put it into words.. I too have had children and staff say to me 'he said such a thing today and we all understood!' type stuff.. and I feel pride, sadness, joy, all at the same time and it's often hard to keep the emotion off my face and respond appropriately. Alex can't walk either. He is in mainstream and at a wonderfully inclusive school with many PD children among its pupils.. but is still one of the most disabled they have. The word special has become a double edged sword, because it describes DS in so many ways.. he is certainly the special one in his class.. there is no other in his class that can't walk, says so little, can't use a pencil at all, wears a protective helmet, dribbles, drags the daffodils out of the vase on the teacher's desk eats them, climbs into the packed lunch box trolley opens boxes and eats whatever he can get hold of, needs 24 hr one to one attention, can only 'behave' for small segments of assembly, has to be 'fed' most of his lunch, uses a wheelchair...

...But then on the other hand.. there is no other child I have ever come across, yet, (but perhaps your Lottie is one!).. who loves so unconditionally, who spontaneously shakes hands and greets complete strangers leaving the vast majority smiling openly, who gives me the biggest boost in the world when he said 'uv oo too' when I say 'I love you!' (maybe he hasn't grasped the full meaning.. but I don't care!).. who makes us laugh about 50 times a day, who can stop my other two arguing and stun them into silence for a second when they see him master some new (very basic!) skill... who loves his puppet as if it was a family member, who gets so excited that he throws his arms and legs around and emits high pitches squeals at the sight of a banana, who stands at his gate in the morning (and often at night!) and shouts 'mornin'! morning'! Brfast!' in a happy, joyful voice.. the list is endless... He is really is very very special.. and in a good way.. not in the way his very long ten page statement says he is! Ok he's that too.. but that's just paperwork.. and so is Lottie's.. its a means to an end for getting them the provision they need and not something we need to dwell on except to correct and update it at reviews. The statement does not capture the essense of our children.. only we, who are honoured enough to share our lives with them get to appreciate and experience that!

When DS left his (mainstream) pre school last summer, the supervisor (a man, not given to flowery statements!) wrote on his transfer notes for school.. 'Alex has made much progress and has been a joy to work with but I can't help feeling he has given us far more than we have ever given him and will be sorely missed!' When I read this (in front of the supervisor) he assured me that he meant every word. That's why I remember every word and treasure them for the bad days when I get bogged down by the unfairness of it all and 'what might have been'.

I know it would be nice not to be the parents of 'the special child'..I so know what you mean.. I think we all do on here.. but I think it also means that we are special too.. and in a good way."

I can't believe I wrote those words about DS It was just 3 years ago. WTF have we done wrong?? Why has he turned the way he has from what I have described above??

In 2005 he has two massive life threatening seizures and was put on epilim.
I have often mentioned to his paeditrician that the behaviour changed after this episode.. gradually.. but she has been very non commital; was today too. I don't know if that has anything to do with it or not. Just no idea really.

shiny
what a wonderful moving post you wrote.
do you think the medication could have caused the change(because it wasn't you or your dh)
I know a dc at dd's school whose behaviour has changed since coming of epilepsy medication.(i know cp is different)

shiny

I am very sorry not to have any practical suggestions to offer - I only wish I had - but I just wanted to send you my best wishes. Your posts are incredibly moving. It must be unbelievably tough and sad for you and DH.

Shinyhappyschmooo, sorry to hear that you are having such a bad time. I don't know if you remember that I was looking for some voluntry work so I can help someone out who needs it and voluntry work would look great on my CV. I have a quite a bit of experiance with people with challenging behaviour and I am sure I could help you out in some way. I am in Kent aswell.

I have just dug out an old PAYG mobile phone especially for you, give me a ring if you would want help in someway or even just for a chat. Don't worry about asking for help, you would be doing me a favour as voluntry work would add to an already impressive CV in the line of care.

The number is : 07941005648

(((Shiny)))

Am emailing you, sweetie. You know where I am.

Shiny your words really have made me cry, you really sum up what I think we all feel at times.
But the person that wrote that cannot be responsible for the changes in your ds, it is not your fault.
No-one ever knows what will become of their children but when you have a disabled child the future is so much more uncertain & one of the most difficult things is how much their disability may alter their personality.
For me when ds2 seems to change & I see a part of him I don't like I hope that its just a part of his unique way of maturing & we will maybe get a kiss at bedtime again instead of a spit.

Make yourself a PITA to SS you deserve better support.

The melatonin made no difference at all I can't say how disappointed I am. I so prayed it would help.. and then if he got more sleep this might impact upon his behaviour. We gave him 3 mls 20 mins before bedtime and then abother 4mls when he woke up at 11.30pm (been told we can give him up to 9 ml over the course of the night and juggle this as we want) but he still woke up at 3 and 4 and 6.. so we're all, including the other 2 kids, just as tired and ratty as ever.

Will try the max dose tonight.

Why does nothing work with him as it's supposed to? When he had Ritalin for just one day, he was was so manic and wired (exact opposite effect it was hoped it would have!) we disconinued it immediately. Paediatrician said she'd only seen that reaction once before ever.

Supportman thank you so much for your kind offer; that's really so nice of you but I couldn't possibly ask help of someone I didn't know. Thanks so much for offering though. Goodness knows how you have time to do volunteer work!! You must be superman! Are you a dad as well??

Can anyone with experience of Meltanonin for their child tell me if last night probably means it's not going to work?

none of mine have tried melatonin. from talking to other people they have said it took a while to get the right level.
hope tonight is bettre, lack of sleep is so horrible.

Melatonin is good for getting my ds2 to sleep but doesn't stop him from waking later. The slow release stuff seems to work a little better but is harder to hide in food etc.

I suppose we'll persevere with the melatonin and hope it works but I didn't know about the slow release version Copertop, thanks.

SS have just rung! Our social worker has come back today from being off sick. She is very good (and in fact doesn't even hold full SW status.. she is an assistant). She wants to call a CHN (child in need) meeting at DS's school inviting all relevant people. I know what a CHN meeting is (from my coursework! Or I might freak at the sound of it!) but is still sounds awful doesn't it.

SW just told me hold respite carer had emphasised to her how hard work DS is and that "mum and dad need more support". God.. he must be bad.. she is such an experienced RC.

SW ringing back shortly

Shiny - I'm really sorry if my post upset you or made things worse in any way.

Please don't think it is possibly anything you have done 'wrong'.

It could possibly be related to the epilim you know. I don't know anything about that particular epilepsy drug but I do know that quite a few epilepsy drugs can cause behaviour problems as it is always being discussed on one of my forums.

Might it be worth popping in to an epilepsy forum and asking? I know epilepsy action have one.

It might not be, but they are powerful drugs... worth exploring?