Experience of Social Services following dx of child? (Rant - sorry)

[yomellamoHelly]

Had a really frustrating morning today and dh suggested I post on here to discover other people's experiences.

Basically ds2 was diagnosed in July as having CP. This was confirmed again at the beginning of September. He is 23 months old now.

We're waiting for physio and SALT to kick in at start of April and OT the following April (18 month wait). Portage kicked in in October.

Social services have been involved from the second dx and have been here at least once every week since I believe. I feel I've been judged poorly for leaving it so long to bring Guy to their attention tbh. (The HV actually said that all the cases of CP she'd seen in the last 3 years were diagnosed at birth and our case was extremely unusual.)

They've got the HV and community nurse involved (come once a week) and are now bringing in a surestart person too.

Because we're constantly having to stay in to see all these people and have had loads of - unnecessary imo - medical tests up at the hospital too and because ds2 is just so exhausted by it all I'm feeling increasingly isolated from my usual playgroups and friends.

Anyway ds2 recently outgrew his chair. But we sorted out a replacement (thanks to mn) since we know we won't get one through the system until mid-March to mid-April. He just fits into it.

Today social services told me I musn't feed Guy on the floor under any circumstance. He really struggles to sit and coordinate eating so if he has a sandwich I lie him on the floor so it's not too hard for him and he gets at least some food in. Obviously I stay with him! My response was that if he grows out of this new highchair before April (he will) than I will have to.

This resulted in social services saying the surestart person would be coming at lunch time because they're so concerned about this! So after doing the exercises from his private physio, food - a lengthy business - , clean clothes and a clean nappy it'll be time or them to go. Plus I'll have an extra person to cook for. Some help that!

I know they're trying to assess if he's at risk because of his CP (had to go through some of the form with them!) and therefore I feel we can't tell them to shove off until we're found not to be negligent parents, but I find all this interference so upsetting and unhelpful. And it really winds me up that whilst all this is going on Guy isn't getting the help he needs through the NHS and instead dh and I are spending a fortune trying to sort some help out for him privately (which further adds to his and mine exhaustion - am 20 weeks pg). It feels like a real misallocation of resourses.

Had a cry on lovely portage lady's shoulder after who is going to have a word of reason on our behalf, but really I guess I'd like to know if anyone else has suffered all this (tell me it does end!) and if anyone has some hints on how to handle it. (Seems like I get upset almost every time they come afterwards about some of the stuff they come up with and the sheer here-we-go-again-ness of these meetings.)

TIA

Hi, I think I have a vague recollection of 'talking' to you a while ago. My DS1 has CP and is now 3.5, we have never had the Social Services involved but are now trying to get on their books although they don't seem to want us! It is a little bit different for us as DS1 was very premature so we have always known that there were problems. However it seems to me that they are being a bit heavy handed with so many visits. Are they looking at support for adapting the house and providing equipment or is it more from a child safety point of view? Unless there are other circumstances it shouldn't really be the latter, having CP does not put your child on the at risk register or anything like that.
In the first year of diagnosis it can be really really full on with lots of appointments but it does settle down a bit once they are in the system - I do understand your frustration at lack of time to do 'normal stuff'. Can you talk to the HV about this? Is she a specialist SN HV, she may be able to get everyone to back off a bit. Sure start may be a good idea, I have a homestart lady who comes once a week, I know it's a different organisation but I find her very helpful, maybe she could feed him whilst you eat or do other stuff. I wouldn't make lunch for her though!
It is all very stressful and i don't really have any hints on how to handle it as I still get upset fairly regularly. Having said that I find the best thing is to talk to other parents who are going through the same thing. I have looked at your profile and noticed that you are in Kingston. We live in Epsom and i you want I would happily meet you somewhere. I take DS to a number of different therapists and places in the local area that I can let you know about. my email is [email protected] if that helps but I think I can be CATted which may be more reliable.
I do hope some of this ramble has helped! Take care.

social services? what are they?????

we have a 8 year old diagnosed when she was 2.3 yrs old and although(apparently at our one cdc meeting, she has an allocated social worker who never attended the meeting but sent her apologies we have never ever met her or received any support at all)

I wouldn't feed the surestart person!

I have found sending a written complaint to be the only way to deal with SS. I would definitely complain about being held responsible for not being able to get the right equipment because of local service inadequacies. Do you have an OT?

Second jimjams - surestart peep can bring a sandwich.

No experience of SS (yet) but I do sympathise. DS only 5 months old and we have had constant visits from someone or other since he came home from hospital. Combine that with all the appointments to attend and its a nightmare. A while ago I posted a thread about it with feelings similar to yours. By the time we're up medicated, bathed, changed, fed, therapied and visited I felt my life was entirely taken over and I just wanted one day of me & him and nothing else.
I've had this from day one so, though it is very annoying, I am used to it. I imagine its a bit of a shock to the system for all these people to suddenly pile into your life.

All I can say is, get to know the people as quickly as you can. Our outreach nurse, HV and SNHV all know us well now and linger in the background whilst we get on with things, visiting every couple of weeks now, or more only if I request.

From your post, I think you feel quite threatened by SS (they don't have a very good press, do they?) and they do seem to be a bit overbearing in their constant visits. Use this to your advantage. If they are concerned about DSs eating for example, then perhaps they (and the surestart person) will be able to help you manage till OT kicks in. You are concerned too (tried to help on your chair thread) so ask them what they are going to do to help. It is their job to support you.

If you don't already have one, try to get in touch with a SNHV. Mine's lovely.

I do hate it when people are made to feel like they are 'bad parents' or 'failing' in any way, and suggesting that you should have brought DS to their attention sooner is out of line IMO. for you.

It does get better when you get to know the people involved, though, at the moment, my appointments and visits are actually increasing. That is due to DSs changing needs. Hopefully they are being a bit full on to get to grip with your DSs needs ASAP and offer you some constructive support.
Good luck. I know this is exhausting for you x

feelingbetter has a good point: use it to your advantage! make them work for you! if they don't like the way you organise the care, let them make sure that appropriate equipment is at hand.

errr
ds was diagnosed cp at 6 months, and that is early

your hv talks bollocks

BOLLOCKS!!!! My Ds1 was dxd with CP at 30 months old!!!!!! They are speaking crap sorry!!

Following on from others - I don't know what the circumstances are with your DS and his early life but my DS has severe brain dAMAge and very likely to have a CP diagnosis at some point. His doctors have made it very clear that, in his case, any diagnosis will not come before the age of 3.

Please believe in yourself and don`t let anyone brow beat you.They should be making you feel enpowered not negative

Thanks for all of your kind posts.
I guess I do feel threatened by them. Growing up my mum always used to threaten my older brother with social services taking him away if he didn't do x, y, or z ... So I suppose that's what's in my head.
As for the food issue ds1 is the fussiest eater possible. Until he went to nursery I never used to eat with him and it's one of the things I wanted to do differently with ds2 to try and end up with a better eater. Sandwiches are a sore point because I find ds2 eats much more of them if he's on the floor than if I try and sit him up. And obviously that's where the whole chair issue comes to a head.
Never heard of a SN HV. Learn something new about this CP business every day. Is one of the things I find hard because I expected somebody else to be an expert and educate me; not for me to flounder about getting hold of whatever information I can to guide what I ought to be doing.
Thanks again.

dd was diagnosed at birth and we called SS soon as I got home from the hozzie cos the Cgild Health and Disability Team is often the only gateway to services for the child.
We did have one terrible social worker in the early days who claimed my number 3 child didn't know his alphabet cos he was home edded. None of her damm business.
Getting equipment is a contant battle - I've reported myself to SS for dd never getting bathed cos the wankers haven't built her bathroom yet (3 years and counting...) but funnily enough they haven't responded.

As for your sons eating - it should be a SALT who helps you with eating, not a Suretsart person ffs. SS hassled us about feeding dd in our arms rather than a chair so I told them to feck off, then they hassled about me letting her get used to carers in her own time.
You need them but some of them are interfering opinated wankers. {sad]

God, this sounds awful. Poor you. DO what Jimjams says. Write and complain. I had a paed refer me for parenting stuff with SS after a meeting in which I had ds (aspergers) aged 5/6 and dd2 (18months ish) who of course both were being 'naughty' owing to being in a small room with no toys adn lots of fascinting things that curtains on rails and beds that went up and down, and no attention from mum who was - shock, horror - trying to listen to HIM. Made me very angry and I just ignored any letters etc.

DD wasnt dx,d formally with hemi which is on the CP spectrum until she was 3.7yrs old.

They suspected it when she was a baby and told us but it took until then for them to do it.

The cheeky feckers telling you off for feeding him (in their opinion) the wrong way,tell them to get off their arse and provide proper equipment then.

letter to your MP,peadiatrician or failing that go to the paper, oh SS dont half wind me up. on your behalf.

SS are useless. There is evidence of clear neglect and abuse and people at the ground level are ignored and the worst happens, yet they are involving themselves here oh sorry that's another thread.

We had a social worker once, more than a year ago, and maybe we made it sound too rosy but we have (thankfully) had no contact since.

Get onto your GP, your pediatrician, at the CDC or CDT, and say what you need, you need help, not people checking up on you!

We have found NHS therapists next to useless, the OT has been the "best" but we only see her periodically, the others are useless.

You need practical help (like a new chair eg) not these people running your life.

I am fed up of all the appointments, but it sounds the people you are seeing are next to useless and not what you and your DC need.

No other advise or suggestions but know how you feel...

There is no way you should wait till april! That is negligence in and of itself, write letters, ring up every day, make a nuisance of yourself!

Hugs to you,

"Learn something new about this CP business every day. Is one of the things I find hard because I expected somebody else to be an expert and educate me; not for me to flounder about getting hold of whatever information I can to guide what I ought to be doing."

There are experts out there, but not where you might think. Professionals tell you bugger all- you need to talk to parents, locally and online. Lots of us have been there, done that, got the t-shirt so can advise. We can also make sure you're getting all the stuff you're entitled to because again professionals never tell you.

SS referred me to a clinical pscyh for ds1's behaviour - she came -said I was doing everything correct and that 'that's autism isn't it' and left me to ring her if I needed to get some ideas or talk through something ever (useful help- a rarity!)

When when we were applying for a DFG to try and make our house safe for ds1 they asked school whether there were behavioural strategies that would work (because of course you can reason with a severely autistic child!) and school bless them said no, they just had to make the environment safe.

23 months seems a normal age to be diagnosed tbh! what on earth is wrong with them??!!

I found the influx of visits off people overwhelming in the early days. it does settle doown eventually. I think time4me hits the nail on the head "Believe in yourself". It knocked my confidence as a mother so much, please do not let the same happen to you. From you post it shows how kind, caring and thoughtful you are

JimJam is (of course ) right

The manager of my local children's centre asked if she could refer ds to portage, then gave me the form to fill in myself

the box for services required also listed OT. So I ticked that too because other dcs with cp on here have OT's
Got two letters, one from portage that he has been accepted and is on the waiting list, one from OT that he is very high priority and skips their waiting list, they will be in touch for an appointment

no ss involvement here except for ot assessment and adaptations/ equipment. dd2 was not dx until 23 months although we were on all therapy books from birth and dla from 6 months.
have you got a specialist feeding slt? demand instantly that you have an emergency assessment from a specialised feeding slt as to whether it is safe for you to feed your son lying on the floor. if it is not, they will have to provide suitable equipment. if it is, ss can poke off. and show them the report when you tell them they aren't coming in at lunchtime today.
surestart are there to help - they will do what you want them to do, to help you, so speak with the surestart co-ordinator and don't be bullied by ss.
you can take control quite easily, but you do need to make sure that you have the appropriate therapists support when you do, so the feeding slt appoinment is your absolute priority. no ss is professionally capable of making a decision as to which way it is safe to feed him.
what feeding chair have you got? we had a jenx giraffe at that point i think, which was a pita as it didn't go up to dining table height, but we had a tumbleform so we could feed at floor level too if necessary.
take some control, girl, but get some back up from the people who actually ARE recognised as experts by ss.

here I go again.......am getting unbelievably repetative now. Please have a look here. I always provide this link after someone else (On here obviously ) pointed me there. It helped me so much in understanding what was going on, who's who, what help is available etc.
Jimjams is right, the help is out there but IME you have to look (this board is wonderful) and demand. Almost everything I know now has come from the wise people on here, sometimes through my own questions and also just reading other peoples threads. Even if the situations are different, people further along the line know so much, so please keep posting here with your queries and rants. It'll help keep you sane till things settle down.

P.S. Have you applied for DLA? Please do so, info on website above.

Hey - I can't even get a social worker in order to access direct payments / respite. Dd 's referral has been thrown out cos she isn't disabled apparantly. Tis just medical

dd has cri du chat syndrome, partial trisomy 14q, multiple brain abnormalities inc leukodystrophy, sld, no mobility and uses a wheelchair, wears nappies, no speech (or signing or pecs etc), she's moderately deaf and virtually blind in one eye. And has got various medical problems - probably epilepsy as well.

Pfffffffff

You're all brilliant.
Am feeling much more positive today (had a good visit to a conductive learning place and don't feel like I'm quite as mad as I did yesterday). I also had a call from OT regarding the chair. They're coming tomorrow to assess ds2! I nearly fell off my chair! First I was told 18 months. Then I jumped the list and was told 13 weeks because he was such high priority. And now tomorrow. I'm wondering if this is all down to our portage lady tbh. OT person wouldn't tell me how come she was suddenly going to see ds2 tomorrow though - just that he obviously had a significant need (always has imo).
Romy7 - fab advice. Have banged off an email to that effect now, so I shall see what happens.
Social services are back again on Monday (want to speak to dh). He's always great at summarising what I should have said in response to various comments they've made. So it shall be interesting to see what he makes of it. You're all right though. It is time to stand up for us. Hopefully dh'll give me the strength to be forthright! (Get tongue-tied when upset.) Thanks for the ears.