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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 make my ds less demanding, not as time consuming and not as controlling......................

16 replies

devientenigma · 07/03/2011 22:18

please tell me where to start. He's 10yo, primarily down syndrome and doesn't go to school. However he needs 24/7 supervision, my house and sanity is going downhill. TIA X

OP posts:

mariamagdalena · 07/03/2011 22:32

HE by choice or default?

Original poster

devientenigma · 07/03/2011 22:34

A bit of both at the mo, been waiting for the psyc for a few month to do the letter to education to help him access home tutoring!!

OP posts:

Original poster

devientenigma · 07/03/2011 22:35

He has also been diagnosed with social phobia and school phobia if that helps.

OP posts:

mariamagdalena · 07/03/2011 22:43

Sorry that looked a bit blunt. I meant in terms of you getting a break, if schooling might be an option for your family then advice about how to get the right provision is going to help.

Either way, is there anything he can enjoy out of the house? Even if you have to accompany him? I find the park or going to beavers burns off some energy, improves his mood and reduces the mess-making time by a couple of hours.

The other approach is to do something to enhance your ability to cope with a situation you're (hopefully temporarily) unable to change. For me this was a parent support group and counselling.

You're posting on here rather than sinking into despair... think you've already made a good start.

mariamagdalena · 07/03/2011 22:54

Could your GP do a letter to the LA about the anxiety and school phobia etc while you're waiting for the psych? You don't have to bring DS with you to the surgery if he's too anxious to go. The receptionist should be able to arrange a phone consultation if you explain the circumstances (Tip: don't ask for the letter in the first consultation, it can get people's backs up if it's not really their job but is often forthcoming if the request is tactful ) Or ask a school nurse? All children 5-16y are entitled to access the school nurse services. You just call up the primary care trust, ask for the school nursing team and say you have an informally excluded child so they know which extension number to give you.

Original poster

devientenigma · 07/03/2011 23:09

Thanks, I have phoned the psycs secretary today to chase it up. It's just he is unmanagable most times and aggressive. As well as needing to be in control which can be quite demanding, the lack of understanding etc. I know I will try and kick myself out of this. I know it sounds silly but it's my washing and ironing I'm worried about, I'm so far behind. I had to iron a school top for my dd this am and remembered how much I enjoy ironing. It's by the time hubby gets in from work I'm shattered and weekends I haven't found the time, yes I know it looks like an excuse. I sound pathetic now.

OP posts:

EllenJane1 · 07/03/2011 23:16

Not at all, you just sound like you need a break! I hope you get something sorted out soon. I can't imagine how I'd cope without my DSs going to school.

shazian · 08/03/2011 18:42

Big Hugs Devient. Hope you manage to get schooling sorted soon, to give you a break if nothing else. I too have 10yo ds requiring 24/7 care and my break is when he's in school. Although we love our dc with all our heart it is so very tiring when you dont get a minute to do anything else. Your doing a fab job hope you get much needed help soon. x

TooJung · 09/03/2011 00:36

My DS2 was 10 when I removed him from school. In lots of ways he became more relaxed, but also more demanding as he let out loads of anxieties in behavioural ways. It was a dreadful time really, looking back, and so lonely.

I had not been expecting this. I had imagined that home edding would be a magic wand right from the start. The first year was full of unexpected setbacks due to this and there was no further deregistration possible if you see what I mean. He even asked me if he could be taken into care :( All this was coinciding with me trying to understand what home education was all about and the dx process for ASD.

Might something like this be going on with you and your son?

I used to have to sit with him while he watched special tv programmes. I'd have to negociate to get time off to go to the loo and make a cup of coffee, then I'd sneak in some washing before coming back to my place in front of the tv with him.

TheCrunchyside · 09/03/2011 09:57

I find with my ds age 5 with gdd and asd that the more attention i give him the more he craves.

When I'm not tired and feeling torn in a million directions or disracted by t'internet then I feel that happy about this because it is an opportunity for him to learn from our play - social skills as well as educationally.

But that is because my ds is still willing to adapt a bit to my ideas so not as controlling (yet?!) as your ds.

I think I've read post from you before where you have said how he is now unwilling to go to school.

Is he the sort of child that would suit a boarding school? They might be able to offer the routine that no family can. Might also help with transitions if the classrooms are in the same building as where he sleeps.

Can't believe your LA is so slow at getting any home tutors in place and all the while he is missing out on an education

Original poster

devientenigma · 10/03/2011 07:35

Thanks guys,
Apart from a diagnosis of extreme challenging behaviour also, he does have behavioural problems, he is severe learning disabled too. The psyc is trying to diagnose him with something else?
The boarding school idea, my friend has also said (she has 2 lads with asd). However hubby couldn't do that.
Think the problem is I am just desperate for a break.

OP posts:

Original poster

devientenigma · 10/03/2011 07:39

I also think if I knew ways to stop his need for control, this would take away some of the pressure.

OP posts:

TotalChaos · 10/03/2011 07:41

To state the obvious, sounds like he needs a school more suited to his needs, as home edding means you get no time off. Do any of the resi places take day pupils?

Original poster

devientenigma · 10/03/2011 07:56

Up until now TC there is only the behaviour team who feel he needs reassessed in regards to school and respite.

OP posts:

TotalChaos · 10/03/2011 08:06

So if school still reckon they are meeting his needs then that doesnt help....hope behaviour people can help sort something better

TooJung · 10/03/2011 19:33

In terms of simply getting a break, my husband takes my boys off for weekend breaks and I just do whatever I want.

I have had enough of holidays which involve stress all round so now I don't go on family holidays, but get my respite and the children get solid dad-time.

It also means that he appreciates how I deal with everyday life more and doesn't expect miracles.

He knows how to get on with them better this way and is able to pace their time together so they come back happy not stressed out.

He takes them out for little excursions too, so I get a hour or two of guaranteed no responsibility, though I am always on alert when they get back in case DS2 has become edgy for some reason, and I am ready to pick up the pieces.

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