DS has been going now for over an hour.............

[devientenigma]

..............does anyone want to ride this through with me..............

[madwomanintheattic]

you ok?

i find standing on the doorstep in the dark a distraction technique that might work?

[devientenigma]

lol, been ignoring him, hate the head banging and the punching etc, especially the noise!! However maybe the air will clear the headache he's giving me.

[madwomanintheattic]

ah, that sort of going on.
take him as well if he isn't likely to do a runner.

distraction good for both of you?

change of scene sometimes works when stuck in a particular cycle here...

esp if supposed to be asleep and get calmly led outside.

best not if likely to completely lose it re routine though!

[devientenigma]

it's because we won't take him for a drive. It's been every night this week, similar time even if he's been on one drive.

[madwomanintheattic]

ah. going outside is the last thing you need then

[madwomanintheattic]

can you link the drive to a particular time and get him to associate with (much much) earlier?

so, i dunno, shower, drive, drink, bed. (wine)

how did the late night drive start? one off and then became inextricably linked with night somewhere along the line? (assume it is night. it's only 4.30 in the afternoon here )

[madwomanintheattic]

have you got a safe space?

or a great whack of melatonin?

[devientenigma]

I wish it was 4.30 here also, it's 23.35. He's only 10 so I think the wine is out the question I don't know he's been on and off for years, it's not seasonal as in summer etc He doesn't really link things together, however he is routine like but then he is also his way or no way

[devientenigma]

don't have a safe space, have melotonin though, it doesn't work that well on him and tends to send him hyper. Plus he has a heart condition and sleep apnea so it's just a small dose. Should really ask to up it.

[Al1son]

How's it going Devient? Or rather is he still going?

[madwomanintheattic]

melatonin can be split-dosed as well? so if too much is an issue and he wakes later, you can give him half at bedtime and half on waking? might be worth discussing with paed?

sometimes growth spurts mean you need up dose as well...

best keep the wine for you then.

any dvds or background noise that will settle him/ give him something else to concentrate on? i know anyhting electronic sends ds here into instant frazzle, but i do know some people who swear by it as part of the 'quiet' routine.

[devientenigma]

Al1son, I went to bed at 1ish and left dh to deal with it. I'm just wrecked at the minute with having him 24/7 with him being signed off school.
Madwoman I might try some music in bed. Would probably prefer the dvd but he's in a specialised bed which unless it's on the ceiling he wouldn't be able to see. Will also see the pead about the melotonin. Hope you's had good nights x

[madwomanintheattic]

can you get one on a swinging arm thing up in the corner of the room? so it's out of harm's way ordinarily?

how long is he off school for? worth having a go to get some respite?

[devientenigma]

Hi Madwoman, he's been at it all day today and not long gone to bed. Iv'e been on energy drinks all night but feeling wrecked again.
Told dh about the TV and he was a bit worried he would be up all night watching it and worse still asking us to turn it over, put another dvd on etc lol.
He's been off school a year, has always been reluctant, however he's too big to pick up and take him there now. He gets scared at school, scared of the kids, scared of the noise, scared of the work etc. He was signed off a while back by the psychiatrist and now has a home tutor for 20 mins Mon to Thur.
He does get respite but like school, it's hard to get him there. Some of the same issues as school.

[madwomanintheattic]

can you change your respite to home-based so you can get out for a few hours? not sure how direct payments works these days as been out of the country for a year or so... mencap used to have very good advice in our area, and also ran excellent weekend respite. who does yours?
(twenty minutes ed a day is rubbish - how on earth did they end up at that? )

the tv thing is interesting - if he's awake and screaming/ head butting etc, is it really any worse if he's watching tv and having some calm in there? (at least until you can get some paed advice and sort out the meds if nec...) i mean tv isn't ideal, but tbh if it's a short term solution to the current situation where none of you are getting any rest... there just aren't really any 'good' answers, are there?

it might be time to start a campaign for some overnight respite too? lack of sleep is a killer. are you on high rate dla?

any rl organisations locally that might have some good ideas? i know our local nas used to be fantastic too...

hopefully you're all sleeping now.

[devientenigma]

HI Mad, yes I was probably asleep. Social services can't give help during the day as they can't be seen to be encouraging children to be out of school.
He is in overnight respite for 2 nights next week if our plan to get him there works. He does also go to a carer on a Friday teatime.
The 20 mins ed came form his class teacher saying he wouldn't manage more than that. Yes he's on hr DLA. As for the rest this is where it gets tricky, my son is primarily down syndrome with obvious medical issues. As well as dx TRAITS of adhd, asd, ocd and odd. Local down syndrome can't help as they have never come across one like him. National DS say he needs an official dx of asd, as do nas. However a few of the profs involved think he has pda. All this conflict and argument has gone on around him for years with no real productive help.

[madwomanintheattic]

same old story. loads of people sitting around and pondering for years

have you had caf done? (recently, properly?) might be time if not... it sounds like they need to get their acts together, particularly wrt ed - is there anywhere specialist within driving distance that does day with some res? not sure how old he is, but know a couple of similar kids (not ds though) who have benefitted enormously from a really good placement...

so exhausting.

is he due a review with ed psych? if it's coming up to a year they should be keen to review support from that pov as well (know how shitey ar is if you don't push it though. rubber stamp and 'next'. never mind if needs have changed.)

how old is he? (crossing my fingers for next week's o'night x)

[devientenigma]

Hi mad, they won't do a CAF as he is known to the services, thats the reasoning. I'm unsure about the ed with res but might look into it. Ed psyc's tend not to bother with him. The last time I got those involved was May last year, they wrote a fantastic report and questioned a lot of what school were saying about him. However the report ended up being shortened on the heads say so. Apparantly it doesn't matter where or how you get help this head is into everything and seems to be quite powerful. He's 10 btw.
Well it's respite time and we haven't been able to get him out over the weekend. He missed his respite teatime on Friday and so far it's not looking good for tonight. He refused to stay at my mams on Saturday also, so one of our back up plans may not work either.
DH and I are supposed to be staying at a really expensive themed hotel tonight for his birthday..............if all else fails looks like ds will be 3 in a bed.

[madwomanintheattic]

supposed to be transitioning to secondary in sept? or in an all-through?

it sounds like the right time to be causing absolute ructions until they get a grip...

have you got a copy of the original ep report?

crossing my fingers for you tonight x

[devientenigma]

He's got one more year to do in primary, however secondary is in the same school as it's 2-19. They just wear a different colour jumper.
I have a copy of the amended ed psyc report.
Thanks, he stayed at my mams, then today we took him to the same park as the respite centre were at hoping he would be left on their bus to go with them..................no such luck!!

[madwomanintheattic]

oh, at least you had the night off. hopefully you mananged to relax a little.

time to go back to cahms again? will they send someone out if you can't get him there?

it might be worth asking about meds for anxiety, if there's anything he can take with his heart. it might be enough to enable him to get to respite etc, if not school?
apols if you've exhausted that avenue as well...

[devientenigma]

made me smile, he's on prozac but takes it on and off, the last few days with hubby being off he's been doing it and giving him the wrong dose, hence a previous thread.

[madwomanintheattic]

oops
didn't see that one yet!