Is it really awful...

[CardyMow]

To wish that school holidays were never any longer than a week at a time? I don't mind having them more often, just each one needs to be shorter! My DD can just about cope with the change in routine for almost a week, then her behaviour starts becoming BLOODY AWFUL. I know it doesn't help that her seizures are increasing ATM, but it's really the lack of routine affecting her asd that's killing me. I just want to lock myself in my bedroom and not come out again until the 4th January when she goes back to school. I can't deal with the screaming, shouting, constant meltdowns if someone so much as breathes in her direction. I know a lot of it is her being post-ictal, and the rest is due to her asd (she would be fine if I got her up at 7am every day through the hols, took her out of the house at 8am and didn't return until 3.45pm, but bus fares are so dear for all 4 of us it is nearly a tenner before I find something we can afford to do, usually only once a week through the hols). BUT GOD she'd better be in a better mood tomorrow or I'm going to bloody hibernate til the 4th!! I hate being so skint that I can't keep up with the routine every day of the holidays, and as DS2 still has his chest infection (after 5 weeks and 2 courses of antibiotics), I can't really take him out in this weather ANYWAY. AAARRRGGGGHHH! Am I just being horrid? I am only getting about 3hrs sleep a night, and have been having aura's all day myself, so am going to have a seizure myself soon. I'm just soooo worn out by it all. That I'm feeling down ATM. I keep having dreams of a weekend at a spa....alone....in peace.....

I read your post and could have written it myself. My DD has absence seizures but we are fairly sure that they affect her behaviour badly.
What does post-icital mean?
The only thing that seems to calm our DD (11) is walks where no-one else is likely to be... countryside or beach ( luckily we are in reach of both) and these are free. We take drinks and snacks in rucksack so we don't have to spend on cafes.
I can't take her anywhere that she may be over stimulated by myself as she is too strong to control if she decides to run off.
Best of luck. I've found that being unprepared is my greatest downfall.

Oooh... if you go for a weekend spa, can I come too??

My DS has ASD and like your DD can't cope with change of routine either. Christmas has been a real nightmare - he was as high as kite and racing round and round at relatives homes! We also had huge meltdowns and I am stressed to bits so I understand how you feel. DS was only diagnosed in October so we were completely unprepared for the onslaught - his autistic traits are only just coming to the fore at 3.9yrs. We are going to do a more low key christmas next year and give him plenty of warning of any changes to routine. He seems to cope better if he knows what activity is coming next and there is some kind of structure - even if it is breakfast followed by playdoh,then lego, then lunch.

You have may sympathies.

Have had a soothing bath, a milky drink, changed her bed where she'd had an accident, and now feel really mean. I know she can't help it. The only thing that calms her down (obscurely) is the cinema, despite the loud noise etc, everyone is sat down and she can focus on the film. I have raided my money box (literally!) to take her and her brothers to see alvin and the chipmunks 2 tomorrow. Only £30....(£5 each to get in and £10 on bus fare). Maybe it'll calm her down a bit. I have realised just how pants it must be to be HER at the moment as well, think I just need to dig deep and root out a little compassion. It's just harder to do that during the day when she's screaming and throwing things. . OH and shockers, post-ictal means 'after seizure', and is a phrase used to describe the 'after effects' of it. And I hasten to add, that living on my own, a spa weekend is just a pipe dream!! One day......

I have the same problem. Do you have a SW for her? If not, I suggest getting one and asking for some holiday respite.

I was at the end of my tether during the summer holidays, really felt housebound and as we live in a flat with no garden, was very much so. Still have ds3 in a pram, and ds2 is a runner, so no chance of going anywhere normally. I ended up getting my HV to do a CAF, and we now have respite for 6 hours a week during the holidays. It's a godsend, although stupidly I said that we would only have the one respite session this half term fool that I am.

See Loudlass its the opposite for us- we get a weekof real hell then the boys settle intor outine:i'dhappily go for less but longer holidays every time.

'wishing for lottery win and childminder daft enough willing to look after 2 ASD DC's and an NT DC...>>'

Can you get help for the NT one? That'swhat we'vedone- ds4 (we think he'll be AS but too young to know yet) goes to he CM two mornings a week,otherwise I struggle- ds3 used to go toCM but she couldn't have the child he has become (stilla dorable but very hyper) and it's a no-no for very aggressive ds1.

DS2 is NT so goes to cubs etc but does struggle a bit as he has SEN, (probably dyspraxia with add or thereabouts).

LOL! at help in my area! I've got severe epilepsy myself, and had a care plan produced 2 years ago saying I needed a daily carer to help me make dinner (I keep burning myself having seizures in the kitchen), And I've not seen hide nor hair of one. DC's don't have a social worker as last time I asked them for help, they put my DD in foster care saying I couldn't cope, so VERY reticent to ask for help again. Don't live in a surestart area, and there really isn't ANY way I can afford a CM for the NT one, I'm on benefits. HE does spend quite a lot of his time at his dad's though, I have shared care with him. Originally it was to give him some experience of a household with no SN kids, but that's backfired now his dad's remarried...DS1's stepbrother is ALSO asd/adhd!!! I'm off soon to go and watch some squeaky hamsters in the vain hope that it may 'concentrate' DD's behaviour and sort it out a little. She's still not great. And DS2 seems to have disappeared into his own make believe world, drifting around going on about the green elephants that are eating his playmobil dinosaurs....and reading the time off his digital watch EVERY BLOODY MINUTE!!!! It's like living with the ruddy talking clock!

And my fecking neighbours seem to think it's ok to use their (hideously loud) surround sound systems all day every day in a tiny 2.5 bed terraced house. Is it illegal to go and jump up and down on their speakers??!! (I can't go and talk to them about it, one side just tells me to F'off,it's her house and she'll do what she wants in it, and the other side actually assaulted me last time I tried to ask her to turn it down)....Thinking shotgun through the windows at the speakers/ hiring someone to break in just to steal the speakers/ hiring a hitman. My HA says that as I'm the only one in the street who doesn't like it, they wont do anything. Is it my fault all my neighbours are inconsiderate and enjoy loud music from 8am-3am? AM I the weird one for thinking you don't subject others to your (god awful) taste in music??

And Riven...fingers crossed for no snow! I know how hard it is to push a mac major through the snow, can only imagine a wheelchair being worse!!

I take it you've possibly come across this...? I have been keeping diary sheets for the HA, but I've been doing that for 2 years now. . I'm trying to move...

Loudlass we don't get help from SSD either,Dh is a student so student finance pay for childcare 2 mornings a week. After that ends we'll use DLA,as toddler is a poor sleeper I only get 3-4 hours sleep a night and got to the point where I ceased functioning a few months back. We don't have a SW, didn't qualify for ages and now I am reluctant as they just amde things worse promising help then not doing anything. Fortunately I am not disabled, though I have a lot of AS issues myself,DH has recjurrents everedepression and I have mobility probs on occasion (plantar fasciitis) so it still can be a PITA!

Luckily Dh is about a lot atm (was made redundant hence student retraining and working from home)which helps. Massively. And he ahsn't had a relapse for a few years so as long as he sticks on his meds I am only carer for the boys and not him, that was too much!

at vpmos- my DS2's dad and I split up for 3 years due to his (paralysing) depression, we've only just got back together (ish, no living together, he's asd himself, so not easy to live with!). I totally understand what you mean about having to care for them as well....And as for the ruddy cinema, it was sold out for today, so I've had to get tickets for tomorrow....15 and a half hours to go!!!!(And maybe I can find some sanity in the darkened cinema!)

You don't need to answer this, I'm only mentioning it in case you haven't, but have you applied for DLA? My friend gets it for severe epilepsy and it pays for someone to come in and help with cooking etc. My DS1 has epilepsy as well and gets a travel card which gives him free bus travel off peak. He also has a railcard which gives him and whoever he travels with one third off.
I'd report your noisy neighbours too!!

I get DLA for myself, but for years DWP told me I couldn't get it for DD & DS2 as well.(total hogwash!) Have just completed and sent off claim forms......