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SN children

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

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Original poster

I need to whinge, sorry can't take much more...

28 replies

Chocol8 · 15/01/2006 18:38

...I am feeling very depressed at the moment. I sat with my head in my hands and closed my eyes yesterday and almost prayed not to have to get up again.

I feel totally drained with ds's behaviour - it is about the worst it has ever been right now and I really fear for his future. He has Asperger's and ADHD.

He has a cardio appt on Tuesday as he has been having palpitations. This may be a side effect of his medication (Strattera) or just heriditary as I have a floppy heart valve.
He is being checked urgently for precocious puberty and he has increased his SIB. His beloved teacher left at Christmas and he misses her an awful lot.

The last time he self injured, he wrote in his book "today a new force stronger than the devil approached me..." That scared me! He's been under CAMH for over 2 years now.

Just before Christmas his "dad" (who refuses or just wants to ignore that ds is SN) decided that he only wants ds once a fortnight now instead of weekly, although ds has been used to weekly visits for the last 6.5 years.

I'm with ds all the time except when he is at school - I take and collect him, but his dad will not help further. My sister and dad are about the only ones who can deal with him, but they are drained after a few hours.

I know that I may seem self pitying, as some of you have two or more children, but I feel myself slipping into depression. Does anyone have any suggestions please?

OP posts:

Aloha · 15/01/2006 18:43

I am so sorry. Your ex sounds really mean. What kind of behaviour is your ds showing? Are you getting much/any help with him?
Sorry I can't really help but I am sorry you are having such a hard time.

tamum · 15/01/2006 18:50

Oh Chocol8, I am aghast at the idea that you could imagine anyone would think you self-pitying. Having two or more children is nothing really, and you must be worried sick and completely drained with dealing with all this- what a killer combination. I really wish I could say something to help. I'm just so sorry.
xxx

Original poster

Chocol8 · 15/01/2006 19:07

Thanks Tamum .I have no other help with him Aloha - we attend an autistic group every other week for a couple of hours, but yesterday was the first session since the middle of December.

Yesterday, he had a meltdown and crawled under a chair and was screaming because he didn't want other children to destroy what he'd built. The helpers didn't deal with it appropriately, so spent time calming him down. He said his chest felt like icecream - although he wasn't cold - he couldn't explain it except to say it felt empty.

His behaviour has become ruder and even more aggressive than ever lately and besides himself, it is usually directed at me. There seems to be no let up! It is a relief when he goes to bed, although even with Melatonin, he doesn't sleep. Last night he went to bed at 9, but didn't sleep for over an hour, then he was up at 5am today. He calls me constantly as he worries about things like if there is a burglar, or he hears a noise, or to make sure I have remembered something I said I would do for him.

It's just waring and I can't see a way out of this black cloud at the moment.

OP posts:

Davros · 15/01/2006 19:28

Oh dear Choc, not for one minute should you think you are self pitying. Things sound terrible. It sounds like a review of medication would be in order for a start, which may happen given the palpitations. Not that this is necessarily the answer, but worth looking at. Does he have any counselling-type sessions through CAHMs? I know our local Senior EP does 1:1 sessions with children like your DS. I don't know if or how much it helps. Presumably you have SOcial Services involved? If not I would get on to them quickly and ask for an assessment, and if you have, then they need to know that things are worse and how it is affecting YOU as well as DS. Its a shame that his rotten dad won't have him weekly, at least for a while until he gets over the Xmas break and the teacher leaving. Could you ask him to continue weekly even for a set time, just to help him over this phase? I don't know what else to suggest I'm afraid other than a visit to the GP for you and some counselling and/or medication for you. This isn't necessarily the answer as it doesn't change what DS is doing. WHen I went a few months ago the GP and Counsellor were more than willing to listen, help and prescribe but both said that the problem was not with ME but it was real and tangible things going on that all those things would not change BUT could make me feel better about to "get over a hump". The thing that made things better was that DS had his medication changed and I've got Soc Svs to agree to one weekend a month residential respite.
Please let us know what we can do, just offload if nothing else.

tamum · 15/01/2006 19:29

God, you would just feel that with a boy who is so articulate and sensitive that he could grow up into a really fine person if they could just get his medication right. I know medication shouldn't be the answer, but he's clearly got so much to offer if only he wasn't tormented by his feelings.

I still can't help, obviously, but at least this will bump it until someone who is an SN regular comes along.

tamum · 15/01/2006 19:30

Aha, Davros the cavalry- your post wasn't there when I was writing mine, sorry!

onlyjoking9329 · 15/01/2006 19:52

afraid i have nothing useful to add, but i don't think anyone will think you are self pitying, you are dealing with very difficult stuff with no support, have you got a social worker? they may be able to help with the difficulties you are facing.

Original poster

Chocol8 · 15/01/2006 20:07

As you say Tamum - Davros the cavalry! Thanks for your words of wisdom.

I never even thought of asking SS or a social worker. I found it hard enough asking his dad for something above the 5 hours weekly he was having him for. He offered to have him for monthly overnight stays (this happened 3 times) but to be honest, the behaviour on the Sunday and Monday following an overnighter was ten times worse than I was having!

His dad has refused point blank to have him any longer than 5.5 hours fortnightly, and that is that. Christmas has been so stressful trying to persuade him otherwise. I listed all the stress ds is going through at the moment, but he refuses to even acknowledge it. Do you think SS would be able to offer any help?

OP posts:

Davros · 15/01/2006 20:31

Absolutely! I would definitely get on to Social Services asap. It can be a tiresome and longwinded task but its worth it. That doesn't mean it WILL be tiresome and longwinded of course! Get into that system asap, you really need it and its what they are there for. I have a good relationship with my Social Worker now, having got to know each other, and feel we are being well looked after by them. I have heard horror stories but it does seem to work out in the end, so its worth getting in the system, even though you might feel you don't need any more potential difficulty. It may all be simple.

Blossomhill · 15/01/2006 20:48

Choc - So, so sorry you have all of this to deal with. Please do not apologise! You certainly are not self pitying at all.

Now the practical things I would tell you to do is either call the children's with disability team and request a care assessment. We had one done for dd and it wasn't that bad actually. Ended up with 5 hours a wk DP's to use to help with before and after school care and to take dd to Rainbows. I think that our children do have some similarities and I honestly think that as you are also a single parent they really will give you some hours.

Also have you heard of family link? It is a scheme/charity run by SS and basically your ds would be matched with a family who would look after ds for a few hours. They may take them out or take them to their house. It may not be what you are looking for but worth thinking about.

I also really think you should go and see your gp too and tell them how you are feeling. It may really go in your favour with your SS assessment. With my assessment I told them exactly how bad things were and fortunately she was able to see for herself when she visited dd at school (apparently dd was rolling around on the floor and refusing to co-operate).

Please, please email me. I really want to be able to help. Carry on posting as well! You are not whinging and people do care. Hugs Bloss xxxxxx

Caroline5 · 15/01/2006 20:58

Chocol8, you sound like you are having a terrible time I also think you should contact Soc Svs - we are on the waiting list for respite care from them (I have 2 children, younger dd has SLD)and am also on my own with them (their Dad usually sees them every week, but doesn't have them on his own very much and never overnight.) As Davros pointed out to me recently, you can apply for direct payments if they agree to respite but then don't have anyone available to help out.

Davros · 15/01/2006 20:59

Even if they have someone available you can request DPs.

Original poster

Chocol8 · 16/01/2006 17:12

Well thanks to your advice, I called SS today!

The woman I spoke to asked me all about ds and how his behaviour effects me. She said that within 2-3 weeks I should get a call to offer me an appt with a social worker to discuss how best to help and give some guidance on ds's behaviour.

I told her I was nervous calling and that I didn't want overnight respite (if I was lucky enough to be offered it) it is the daytime I need a hand with.

Ds has his cardio appt tomorrow night so hopefully they can find out what is going on with him.
Just wanted to say thanks for your advice, I think this will get the ball rolling. xc

OP posts:

Davros · 16/01/2006 18:23

Good news Choc, I'm glad you made the call and didn't put it off, tempting though it is! I know you've got a lot on your plate but I wondered if you've seen the SN Meet Up thread? Would love to see you. So far me, HITC, poss BH, Misdee and Sparkly are meeting at Royal Academy at 11am-ish next Tuesday, 24th January. It would do you good!

tamum · 16/01/2006 18:26

Great news Chocol8, well done. Big cheer for Davros, I say

Davros · 16/01/2006 18:32

Original poster

Chocol8 · 16/01/2006 20:46

Defo big cheer for Davros and everyone else who gave me a boost, thank you.

Ooooh, i'll take a look at the meet up thread - would love to come along. Got a feeling I have a meeting, but will try and rearrange it.

OP posts:

Caroline5 · 16/01/2006 21:01

That sounds hopeful Chocol8, keeping fingers crossed that something positive turns up for you.

coppertop · 16/01/2006 21:21

Sorry I missed this yesterday, Choc. As everyone else has already said you are NOT being self-pitying at all!

Hurray for the MN cavalry and I hope you get some help asap.

Original poster

Chocol8 · 16/01/2006 22:14

Awww, thanks Coppertop , i'll let you know how I get on.

OP posts:

heartinthecountry · 16/01/2006 22:18

Hi choc - missed this yesterday too. I was just thinking the other day that I hadn't 'seen' you in a while and wondering how things were. So to see they are not great. Really glad you have got on to SS though and hopefully they will be able to offer you some kind of help.

Would really like to see you at the mini meet-up if you can make it.

milward · 16/01/2006 22:22

Just to offer support to you xxx

Blossomhill · 17/01/2006 20:51

Hi Chocol8 - how are you today ?xx

dizzy34 · 17/01/2006 21:49

Hi, sorry that you are having such a bad time, it must be so hard for you, i havent got any advice that is different from everyone elses, just wanted you to know i had read your post and am thinking of you

WideWebWitch · 17/01/2006 21:53

Bloody hell choc8, this sounds so tough, you're not whingeing, blimey, it sounds very hard indeed. I wish I could offer something more than sympathy.

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