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Banging my head against a brick wall.

(9 Posts)
BoysintheHood Fri 12-Aug-11 10:14:24

Sorry if this is long but I need to get everything out and hopefully get a bit of advice.

My DS is 9 and has severe global developmental delay. He is extremely challenging, his speech is at the level of your average 18month-2 year old. His behaviour has always been very challenging and is no better or worse now, BUT as he's getting older it's getting much more difficult for me to manage. When he kicks off he's a danger to himself and my younger DCs, he wrecks furniture, head butts walls (has gone through one before) and last year he broke my foot.

These holidays are becoming so difficult. I asked for some support during the holidays and after a long battle with SS he does get one day out a week. That still leaves the other four. I can't take him out anywhere because he has no sense of danger and will run off so needs an SN buggy but I can't push him in that and the baby in his pram too.

My DH is wonderful, but obviously at work all week and he is the only one who can physically manage him when he's having a bad day. I have asked his social worker to assess him again and see if I can get anymore suuport but tbh, she's as much use as a chocolate poker. She doesn't see how difficult his behaviour is and thinks I'm exaggerating the problem. An example of how inadequate she is is that I still don't get free nappies for him, despite my asking for them 4 years ago, she still hasn't 'got around' to putting the paperwork in. I've put in complaint after complaint but my local council just seems completely useless.

I've spent 7 years battling for every little bit of support that we receive and it's still nowhere near enough. Every time I call they tell me that there is a massive case load and back log and that we're in a better position than most of their cases as I'm not a single parent (that is not meant to be a dig at single parents in any way, just what I actually get told every five minutes).

I just feel like I can't cope with this any longer. I love my son very much and it's taken me a long time to admit I'm struggling to cope because I feel so bloody guilty about it.

Any advice would be greatly appreciated.

Vinniesbisqwits Fri 12-Aug-11 10:41:56

I really feel for you many other posters have more experience of global developmental delay so ill leave that for aspect for them to cover as they will do a better job than me, but I could feel your complete and utter dispair in your post and just want to let you know we are always here to listen .

yes you need to complain about the social worker and ask possibly for a different one (probably wont happen but lets face it she cant get much worse) ,
have you contacted the continence service yourself direct ? your HV should be able to put you in touch.
Can you go back to the GP and ask to see the developmental paed as I think there are other agencies and therapies that might help.

what are the SS like are you able to talk to them and also to the SALT about how much trouble your having and the behaviour support worker, there could be ways of helping with his frustration and anger,
You didnt say if hes on any meds if now I know its not nice but for the sake of you all sounds like he needs them as hes a danger to everyone now inc your other dcs.

you have absolutely no need to feel bad your working hard being a wife a mum and carer and its bloody hard work, is it at all possible for dc dare i say it to swap roles with you , you go to work and him become carer if ds is better for him?

please take heart somethings got to give and sounds like its now so be strong just one more time and give the services hell get dh or friends to back you so they can never say you didnt ask or they dont remember ect, take mins at meetings and if your getting no joy contact parent partnership ans they can give advice and put you in touch with other people that can assist you further, HTH

WilsonFrickett Fri 12-Aug-11 11:03:24

Hey Boys, I don't have any experience of GDD but just wanted to echo what Vinnie said, we are all here for you at any time.

Are there any parent support groups that can back you up, for example in my town there is a group that is attached to the local children's hospital and they are brilliant at supporting parents when they need to have a fight. They've helped me with letter writing before, and I know they have parent advocates who will attend meetings, etc. to back you up.

It sounds like you need to have one more fight my dear. I would go back down healthcare route - re-refer to pead - and I think you also need to escalate your concerns about the SW, write to supervisor or head of department.

Can you self-refer to any local respite agencies?

Short term, next time DS is out can your DH or someone take the baby for the day so you can just do nothing. Nap, have a bath, have a walk, just try to decompress a bit. You need a bit of space I think.

Finally. The holidays are loooooooong. We are all feeling it in one way or another smile but they don't last forever grin

BoysintheHood Fri 12-Aug-11 13:24:57

Hi and thank you.

I just don't know how to manage the whole situation anymore. We moved here when DS1 was 5 and in our old area the support was actually very good. If nothing else DS had a key worker who was excellent, was always available to talk to and she would chase stuff up for me when I ran out of steam with it all. Here it's all a nightmare, I can't get a phone number fgs, there's one central number which kind of fields all calls to the family & disability team and they just take messages for social worker and half of the time she doesn't get back to me. When she does she only ever says that she is looking onto it.

I have complained but am still waiting to hear about that.

On DS1's days out I usually leave the baby with a family member and take DS2 out for the day as I feel guilty that he doesn't get any time just for him to do anything nice otherwise. I am really enjoying being able to that but no chance of any 'me' time.

The long term plan is that DH will be the SAHP and I will go out to work when I've finished university as tbh, he's much better at all the home stuff than me (lets just say I'm not remotely domestic) and he is. He is fantastic, at least I don't have to manage running the house as he does it when he gets home from work.

I will try the parent partnership, they have helped in the past (long time ago) and I completely forgot about them [doh]. I think things are so stressful just now that I just can't think straight about where to go or what to do next. I need to do what I used to do and find an hour to sit down and write down all the problems/what I need etc and justkeep repeating it over and over until someone listens.

Thanks again for the advice.

Vinniesbisqwits Fri 12-Aug-11 13:30:17

oh another thing i wanted to ask is has he seen CAMHS yet if not id ask for referal, if left as my ds was for us to strugle and him to flounder in the end he began to self harm he sounds lile he needs to see camhs its a waiting list too but they do give you emergency number (well they did for me) so you could ring and chat or ask advice anytime whilst waiting for ref also once he saw them they truthfully didnt do much but they did contact other agencies and forced them along .

Vinniesbisqwits Fri 12-Aug-11 13:43:06

write a list of things to do in order of importance and get in touch with PP some when youve time you can try to do others get them (pp) to do for you my PP was fantastic , they are good in some areas but i hear not so good in others my lady was unbelievable and rang me back even though they were very short staffed always same day often within an hour and wrote letters and came to ALL my meetings and was a elequant voice for me , they took notice of her they never did me hth

unpa1dcar3r Fri 12-Aug-11 13:55:41

Hi boys
Is there any chance you could get a special needs solicitor to do this complaint for you? I have one here and she's ace. Plus she does it on the boys income (which is DLA alone) so we get legal aid...
It was through mine that we realised none of us had had our carers assessments of need done! I didn't even know they hadn't done them. But she asked for a copy and they panicked and quickly did one! Only took them 7 years!!!!
Anyway they wrote back but ignored original complaints (you know, like they do) and she wrote again and asked for it to be treated as a stage 2 complaint which is much more serious. You could also do this.
You need to set up a meeting with the head of the vulnerable childrens dept, preferably with a solicitor or at least an advocate with you...Outline everything, (well try and stick to say 3 major complaints or they go a bit fuzzy eyed cos they're thick mainly and can't cope)
You need some help and you need it now. Your SW is failing in her 'duty of care' and there are strict time limits as to how and when they do things according to the original referral which must be done within 1 working day...

If you google Mencap they have a list of SEN solicitors in your area.

cansu Sun 14-Aug-11 10:21:53

You might try your councillor and the head of children and the coucillor in charge of young people and children's services at your local council. I phoned mine at home (their phone numbers will be listed so we can harang them as elected members of the community!) and he then asked me to send him details in an e mail. He apparently took my issue to social care manager and sat in on a meeting about it. I ended up with what I wanted and the social worker told me it was down to my getting councillor involved. I would never have imagined myself doing this a few years ago but two ds with ASD has changed me in lots of ways... I now put almost everything in writing and follow up with phone calls and e mails directly to whoever provides the service.

saintlyjimjams Sun 14-Aug-11 19:13:00

Video his behaviour and also (this is what I have done for similar reasons to your post) tell them that you will hold them responsible if anything happens to him as they are making you take him out in an unsafe situation. They have a duty under the children Act to ensure his safety. Copy correspondence to the MP.

Also insist on a core assessment if you haven't had one and ask in writing for a carer's assessment for you (they cannot refuse this request and it brings a lot more help).

SS are an utter nightmare at the moment. After years with a package that has kept everyone safe and prevented us losing the plot they are trying to cut it - I have learned a lot about carer's rights and the law in the last few weeks. This is helpful, the middle bit deals with SS www.ncb.org.uk/cdc/Cemented_to_the_floor_by_law.pdf

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