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Can't cope anymore he's going to have to go

120 replies

AnyName · 26/07/2008 18:44

We can't deal with him. Going to have to tell social services that like they care.

DH said he's going to do it. I can't think of a reason to stop him. We're black and blue. cant do this

OP posts:
ancientmiddleagedmum · 29/07/2008 19:11

WOW, what a result! so pleased for you!

nikos · 29/07/2008 19:17

This is such good news. I've been thinking about your family so much.

amber32002 · 29/07/2008 19:52

Phew, have been hoping and praying that you had a good result from all of this!!

TinySocks · 29/07/2008 20:00

Fantastic news!!! Over the moon for you.

MannyMoeAndJack · 29/07/2008 20:10

Good news that SS have listened to you and acted accordingly. I hope the extra help will enable you to move forwards and get back on track again.

KristinaM · 29/07/2008 20:16

fantastic news

Tclanger · 29/07/2008 20:28

This reply has been deleted

Message withdrawn at poster's request.

FioFio · 29/07/2008 20:45

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AnyName · 29/07/2008 21:22

Ok Fio will do so. I will give SWA until the pm to get back to me and then ring for more info. She said herself to do this actually.

I forgot to ask her if she'd had any joy asking about cancellations for the respite centre - I was talking to her whilst out and about the second time. I will ask that tomorrow as well. x

OP posts:
Seuss · 29/07/2008 22:19

That's good news! Very pleased for you and it's refreshing to hear of help being offered when it's needed.

ByTheSea · 30/07/2008 12:10

Good news AnyName. Hope it all goes well. We started on a low dose of Risperidone and increased it over time. Good luck with the respite.

TinySocks · 03/08/2008 08:24

HI AnyName;
Are you around? Just wanted to let you know that I am still thinking about you and hoping everything is improving. Hopefully you have started receiving that much needed help.
xx

Davros · 06/08/2008 19:43

Hi anyname, I have been away for 2 weeks but saw this thread. We just had our first 2 week hol for over 15 years due to many of the issues you describe. I also recommend seriously considering medication and specifically Risperidone. Don't get sucked into thinking that it is causing worse behaviour if it doesn't work asap or needs increasing, remember the reasons you are giving it.... we had to keep reminding ourselves of that.
Also, I understand that you are not ready to look at residential -
"But how can I not have my own child living with me? How could I not see him every day, smell him, cuddle him, check he's healthy. treat any little symptoms of anything the way we do?" - I felt the same a few years ago and would sob just to think about it. But now my DS has been at a great residential school since last Jan and I can honestly say that it has been the best thing we ever did - FOR HIM and therefore for us and our DD too. Until you reach the point where you start to think and feel that it is the right thing to do for him then you won't believe you could ever feel that way and maybe you won't but don't rule it out as a failure, I see our situation as a success for all of us. As others have said, we got to a point where we couldn't meet DS's needs and his school was struggling too. Our Paediatrician sat us down and said he thought we should think about it as "it would be good for DS", we had never thought of it that way but from that moment our attitudes changed. Apart from his Challenging Behaviours (hitting and SIB of course but the so-called easy stuff that in a lot of ways is worse - spitting, picking his bum after a poo etc!), there was his dreadful eating and increasing weight, his sleeping and we just didn't have the physical space he needs. So, although you may not get to that point don't think it is unthinkable just in case, you don't need to give yourself a hard time over any of this, present and future. Glad to hear things are moving......

SixSpotBurnet · 06/08/2008 22:09

Just read your whole thread, anyname, and really feel for you. Glad that you have some positive news to report. Don't compare yourself to bloody Julia Hollander, we can tell from your posts that that's not where you're coming from, at all.

podsquash · 08/08/2008 12:11

Just wanted to check in and see how things are, AnyName? Have been thinking about you and your family.

onlyjoking9329 · 08/08/2008 18:05

only just seen this anyname, so sorry to see the difficulties your are facing, good to see that SS are finally sitting up and taking notice lets hope they fulfill their promises.
take care.

AnyName · 20/08/2008 23:06

I've just seen the later messages and thought I'd update. (Thanks for caring).

DS started on the Risperidone and we were fairly surely we could see a lessening of aggression after a week so, as suggested by the paediatrician we doubled the daily dose to doses (to two tiny 0.25/ml doses per day). However, a side effect we thought we'd noticed became more obvious on the double dose; he became much less about to get his words out and he's seriously challenged in that area anyway. It was getting so that we couldn't understand what he was saying and we always understand him even when others don't. Even if much of what he says he toddler-like waffle we still take pleasure in being able to verbally communicate. He seemed quite disturbed by it too and started to almost frantically use more Makaton than before.

So I discussed it with paediatrican on phone and she agreed that it wasn't suitable for him and this just reiterates how very sensitive he is because only one other of her patients had had this problem and then only after 2 years on it.

He was also a little lethargic, which I think was why he was less likely to hit out/bite etc. Still hyperactive by 'normal' standards but less bounce/oomph in him which made me feel very sad/quilty as I knew it was just because we were medicating all the life out of him! He also kept saying he "wasn't well" which I think was his way of saying he felt "different" or "odd" because he wasn't actually exhibiting "ill" symptoms. And even on the full dose though he was not beyond giving us a bite/kick/hair pull at times although if I'm honest it was less often.

He's now off it. We weaned him off over a few days. His speech is back to "normal for him" which is a relief.

We're coping because we our SWA also got us a cancellation at the respite centre so we had 4 days/nights last week (!) and he's at an SN fun club this week, 10 - 3, Mon - Fri which makes everything more manageable. (We're using the time to try to create a garden which we badly need and will make life easier for wehat's left of the summer!)Next week we'll be back to having the agency ladies come in on a Tues and Fri. They are not actually funded by DPs after all; they're paid straight from social serices. We don't give us all the hours promised as they don't seem to be avaialble that for that long per time but it's a helluver lot more than we've ever had before and DS likes them! They are quite funny (as in off not haha!)- one doesn't speak (much, well to us!) and the other never stops taking!!

We're ok. We're doing alright. The future worries remain but I am back to getting by from day to day (as opposed to not really getting by) and that takes up most of my thoughts - that and dealing with day to day stuff.

Thank you for your input Davros. That's really quite inspiring and I can see why you see your solution as the right thing for you all. I can imagine getting to that stage too; I would like to know that if we did go down the residiential route one da it would be seen as the "right thing for DS" as well/even more than for us.

I love him very much and keep telling him so. He is a lovely little boy. I just wish we didn't have the nastiness to cope with but I suppose that's part of him.

OP posts:
TotalChaos · 21/08/2008 00:48

thank you for updating. am glad that things are sort of panning out respite wise, so a little of the pressure has been taken off.

Davros · 21/08/2008 15:03

Hi Anyname, so glad to hear thing are better. So risperidone (or maybe other meds too) are not for him... that's fine because at least you know that from a point of experience rather than prejudice iyswim. Maybe keep it under review for the future if things change or other meds become available but you have tried and you know why it is not the right thing now.

I am pleased that our story (so far) of residential has helped you understand how it can be and how it can happen. DS is home for the hols now and has been a big mixture of a nightmare, a bit of a handful and absolutely wonderful!

KristinaM · 25/08/2008 13:09

just checking back too - glad to hear thinsg are a little easier

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