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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 can't do this anymore

49 replies

devientenigma · 10/05/2009 19:37

I have had enough. This really can't go on. Before anyone says anything I will go to the docs tomorrow. My head is about to explode. I just don't know what to do anymore. Have very unsupportive professionals and those who are, are not being listened to. Don't know where to go from here.

OP posts:

daisy5678 · 10/05/2009 19:42

What's happened, DE?
We're here.

5inthebed · 10/05/2009 19:45

Whats up?
Feel free to vent, we will listen.

Original poster

devientenigma · 10/05/2009 20:18

The battle between me and DS for anything and everything. I can't cope with the head banging and whirlwind violent aggressive outburst predictable or unpredictable.

OP posts:

sarah876 · 10/05/2009 20:30

Hi I know how you feel...DS shouting and being disruptive tonight...its the constant, dont do that dont do this and never getting anywhere with any kind of approach, good or bad.Ive had just about enough tonight too glad the days almost over with.

PipinJo · 10/05/2009 20:39

This reply has been deleted

Message withdrawn at poster's request.

Original poster

devientenigma · 10/05/2009 20:40

Have had the same battles for over 6 year now.
He doesn't learn, is severely delayed, more on par with 18 months.
Doesn't understand much but would think he knew he had to get dressed etc by now.

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daisy5678 · 10/05/2009 21:04

Poor you. I second PipinJo's ideas, especially the respite. It just gives you a breather to gather your strength to help cope with things a bit better. If you already get some, can you ask for more?

It's when they fight you over every little thing that it wears you down, I know, but is there any way of trying some medication, like PJ says, that might make him calm enough to be more co-operative?

It's crappy and nothing we can say can make you feel any better, but you're not alone with it on here, and I hope you've got RL people to lean on too. Who are the good professionals you mention?

BTW, even the unsupportive ones tend to help a bit if you show them true desperation, which is what you seem to be feeling. Hope your doc might be supportive when you go tomorrow.

xx hope things improve.

madmouse · 10/05/2009 21:19

Have no advice/suggestions/clever comments to offer, but just wanted to post a very un-mn hug!

magso · 10/05/2009 22:41

Sending a hug too (as I've totally failed to find the ?challenging behavior ?foundation website and their free disc)
We begged for (7) years for help - but got nowhere till I burst into exhausted tears one day.

donkeyderby · 11/05/2009 00:15

Try www.thecbf.org.uk It's the second thing that comes up when I googled 'challenging behaviour foundation'. Mainly for SLD kids.

Davros · 11/05/2009 08:08

CBF is excellent but you also need more immediate solutions as suggested here already.

FioFio · 11/05/2009 10:46

This reply has been deleted

Message withdrawn

BriocheDoree · 11/05/2009 11:52

Nothing helpful to add but sending hugs.

Brio
x

Original poster

devientenigma · 11/05/2009 12:59

Thanks for the messages everyone. I have arranged a telephone conversation with the doctor but the earliest was Thursday, so I suppose I will muster through until then.
I am on the CBF mailing list and have had conversations with them before, which always lead to the same thing, professionals being more invloved and medication.
Yes we have a SW but have just recieved a new one so early days there. We do get 4 hours respite a week.
He is in special school however it has been discussed in the past that school are reinforcing the behaviours in him.
To be honest I still feel like crap and would rather plod on im my own way, which would entail not talking to anyone and becoming a recluse going in on myself but I know this is not right and am trying hard not to do this.

OP posts:

FioFio · 11/05/2009 13:20

This reply has been deleted

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Original poster

devientenigma · 11/05/2009 13:44

Hi FioFio, He goes to the LEA pmld/sld school. When I was going to change his school the head and clinical psyc from the other school said this. When mentioned there are a few nods of agreement from behaviour etc.
There is a Saturday scheme, however this is oversubscribed and at the time this was offered it didn't fit around other children's plans.
We have been offered respite and offers of a build up to a week stay although we have major issues with trust and hubby is dead against it. He feels we are palming him off and wouldn't do this with our others. He should be part of whatever we are doing. In a way I agree.
I know this sounds like I am not helping myself but if he just got dressed, teeth brushed etc without so much of a battle we could deal with other day to day such as shopping as well. Hope this makes sense.
Thanks.

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FioFio · 11/05/2009 14:02

This reply has been deleted

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magso · 11/05/2009 15:18

Dressing (or rather the long physical battle to get ds dressed) used to get me down. It felt like he would never get it and it is still an ongoing battle at 9 - but has got easier. It was such a difficult start to every day and then he was tired and fractious after school. We have had some success with a getting ready for school chart (from ebay). This has a picture of each activity and a movable velcro sticker. It helps him anticipate what comes next so is less oppositional. If he gets all the ticks he gets a small reward.
Could school help with dressing and co-operation skills?
Hope you get some targeted help quickly

meltedmarsbars · 11/05/2009 15:38

I really do feel for you - its a place we probably all get to here.

I hope you get help for you mentally - and physical help at home or more respite. Can you try Direct Payments or HomeCare workers?

My dp also didn't want the respite for the same reasons as you - but I pointed out that as I do most of the caring, my needs had to be accomodated!

I do hope it all gets better for you.

Original poster

devientenigma · 11/05/2009 16:10

It's not the fact that i am expecting him to do it himself, he just won't let me near him. He hates to be touched. He would rather spend all day in his pjs with the same nappy on rather than be touched. We do have homecare and this is the same for her. Most times encouragement and bribary, sorry redirection doesn't work. He is quite a sededantary person where nothing motivates him. Also if its not his agenda it's not getting done.
We have tried most strategies, pecs, timetables, games, songs, equipment etc. We have also had the asistance of 2 OT's and 2 from the behaviour team and still not everything was getting done and he was quite often physically restrained.
FioFio I don't think you have been too harsh, this is your opinion and you only have what is reported to comment on.

OP posts:

Davros · 11/05/2009 16:23

Fio is SO right about respite. Don't resist it, it is good for everyone, especially the child with SN which is therefore good for the rest of the family. Mind you, just deciding to take it is not all there is to it, getting access and funding is not always easy.

marmoset · 11/05/2009 21:10

Hello deviantenigma - just wanted to add my support here. It's very grinding when you are having the same battles over and over again (my ds1 has DS and is at the severe learning disability end of the scale).

I would definitely recommend putting his name down for the play scheme and juggling the other childrens activities to do that if you can - we use one and he loves it. Although he is now at special school, he also goes to the local out of school club and to a childminder after school - all report really good behaviour (that's because no-one there is asking him to do anything that he doesn't want to do of course).

Is there anything mainstream near you that you can access as well, with support?

FioFio · 12/05/2009 08:05

This reply has been deleted

Message withdrawn

saintlydamemrsturnip · 12/05/2009 09:01

Special playschemes and respite are essential I agree. Good places will continue to work on self help skills as well (that was an argument used by my SW to get DS1 (10, SLD, severely autistic) overnights at a local respite place - here was somewhere that could work on communication and self help skills. You can't do it all - and your other children will need a break to. I am fully expecting ds1 to love his overnights btw.

I think you also need to sort out what's going on in the school though if reinforcement of difficult behaviours is happening. Is there someone from outside who can come in and set up some strategies for you and the school to follow.

What are his reinforcers? There are times when ds1 will not do a thing and then the only way is to find the strongest reinforcer and say 'first x then y'. If it's not something he really really really wants he won't do it though. It did take a while to learn first x then y but it's incredibly useful. This is the sort of thing the school should be working on.

Original poster

devientenigma · 12/05/2009 09:20

HI, thanks again for the replies.
Sorry saintly when I mention reinforce what I mean is they are allowing him to do what he wants, when he wants. If he doesn't want to go in the class they allow him to stay in the coridoor etc. It's been even joked that he would go to dinner naked instead of gettingdressed after swimming. So when putting boundaries in at home we have the battles.
I hear what everyone is saying about respite and will have a good think about it. I am also a survivor of childhood sexual abuse which has planted seeds of doubt in hubbys head if this helps.
Marmoset, my son is also ds at the severe end of the scale, 8 years functioning 18 months. He also has a lot of other issues medically as well as behaviourally. Just wondering where you are going with the mainstream access.
We do have 2 nights out of school provision, that we are not acessing as we find he becomes harder to manage, his anxiety leves increase rapidly and he becomes even more unresponsive.
Hope this all helps with your constuctive comments.
I do feel a little better at the moment but do feel tearful.
Take care everyone.

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