Help me change my attitude! Need to be more positive!

[Jimjams]

About the summer holidays. Am dreading them dreading them dreading them. I haven't ever felt like this before. I think part of the problem is that I am pregnant (and I am quite frankly crap when pregnant- hate every minute of it- and it just exhausts me), but also that I cannot see a way through them. DS1 has had part time nursery for the last 2 years - and before that was much easier to entertain and take out. Now he needs something every minute of the day and if left gets completely stimmy, also mush warier outside and meltdowns are far more common.

I've been onto Social Services who have said that I'm not going to get anything this holiday, may do in the future. I have been back to the playscheme funding people who have said nothing this year may have something in the future. We have no further money to employ someone ourselves although I am trying to recruit volunteers (although personally I think anyone that works voluntarily with non-verbal autistic kids needs their head examined - so am trying people like SALT students- who would get their own benefit iyswim). Haven't managed to find anyone yet though. I just hate the idea of being unable to go to the post office/bank/supermarket/buy a pint of milk for 6 weeks (actually being too negative there as dh will be taking 10 days off).

DS2 will be attending nursery 3 mornings a week so I will be able to take ds1 somewhere then. Limited because a lot of places get too crowded but will try the obvious things like swimming.

I have 2 friends I can visit easily. One is ideal (autistic dd) other friend is great, but house isn't very auti-friendly (garden gates that don't lock etc) so have to be on guard all the time. I can also take both boys to a small playpark a short drive away- providing there aren't too many children there.

The holidays are looking very looooonnnnnggg. I'm very aware that my attitude is all wrong though and am feeling very defeatest about it. Friends keep saying things like "but you need help" which I would agree with, but I know I'm not going to get, so I need to stop feeling bitter about that, and just get on with it, and get out of the habit of thinking "i need help" iykwim.

DS1's private SALT is coming round on Thursday to help set up some visual timetables with a view to putting structure into days at home, and also some choice boards etc. I'm hoping I'll feel more positive afterwards.

Anyway any tips, or any advice on how to give myself a good kick up the arse would be very welcome.

jimjams I totally sympathise with you. I would suggest homestart too! I have been thinking about it myself ,LOL. You would certainly qualify for it. Ditto to the getting stuff delivered too, food and milk. Maybe even buy UHT milk (?) and store in in the pantry?

As for the computer software stuff, you are in luck. DD's teacher is coming this morning and I will ask her. Are you on about these attach on keyboard type things that are really simple. Like a blue/red/yellow/green circle to make it easier to use? Also I dont know whether your son would tolerate a bob the builder toy. But we have the blue phone (the bigger one) and there are games on it where you follow the charachters, but they are really simple. The buttons light up, so it roley and it lights up and the child presses roley, then it goes roley scoop and the child has to press roley scoop. It is very simple but keeps my two occupied for ages. They are about 20quid I think and we have our for ages and it still has the same batteries in

hiya Jimjams - poor you.

Last summer I had to work which was a complete nightmare. This year I am taking the summer off and have spent the last few months developing a strategy of what I am going to do to keep things on a even keel! Have done up a weekly timetable that my ds has helped me with and he has memorised it already. (eg Library on Monday, swimming on Wedneday..)

The most important thing for my ds (same as your I'm sure) is to keep a routine going. Yes it is going to be different to school (he functions best in termtime without a doubt), but at least if he knows what is going to happen everyday things shouldn't go downhill too much. You mentioned his SALT doing a programme for him - that should be a brilliant start. I do think you might need to accept that things will go backward slightly over the summer, but he will pick up again when he returns to school. It is only a setback.

A couple of other people mentioned Homestart. We benefitted from their input about 4-5 years ago. We had a lady who was an ex-school principal come out to us once a week and did whatever I needed. Usually I asked for her to give ds full on attention so that I could get on with some housework. My ds would also go to their creche where they had 1 on 1 help to give me one morning off. I imagine with your circumstances that they could provide more regular help. They really really helped us at a time where we had no other support and I felt I was drowning with ds' needs. And that was with just one child and not pregnant!!

Also you were wondering about computer games for your ds1. My ds was madly into Thomas the Tank(not really now), and we had a game that got him into computers. Infact if your ds is into trains (what is his passion?) I could send them to you (genuinely) as ds has finished with them.

Anyway hope that is of help. Often the anticipation can be worse than the reality. Do contact Homestart or get your HV or someone to contact them for you.

Jimjams, there is nothing wrong with your attitude, I would be bricking it in your position Its such a long time that the holiday from hell sounds like a good break! Lots of good ideas here. My only advice is keep plugging away at trying to get an extra pair of hands, maybe for DS2 if necessary. If you've put together your "advert" think of anywhere and everywhere to put it, e.g. funky caffs and book shops sometimes have local noticeboards, GP's surgery (maybe someone there has a 6th former in need of hol work?) etc etc. Have you looked at the Gum Tree www.thegumtree.co? Its usually people who want payment but you might find someone or someone at a reasonable price. Dare I suggest a post to ABA-UK? You never know

So wish I had some advice, some pearl of wisdom to impart to you, a magic wand, anything, but alas no, nothing. Just didn't want to ignore your post so thought I'd just say 'I'm sorry' and wish you a healthy and hopefully happy pregancy and I really hope that the holidays turn out to be better that you are hoping.

ROFL Davros - I think bricking it just about sums me up at the moment And you are so right about the holiday from hell!

I have more or less completely stolen your ad (although dh said "playmate" meant other things so insisted on changing that! I am married to a perv! and obviously had to change the bit about good hourly rate-lol - thanks ever so much though- made it very quick for me to write). It's gone of to the OT college and SALT college and private SALT will be meeting people from both this Wednesday - so will talk to them about it then.

WWW= that is a good idea- although would have to find someone willing to live in the building site we call home. Will research that a bit. And I was thinking about ABA-UK this morning. Just a bit embarrassed by not being able to pay anyone iykwim. I have put on the ad that funding my be available in the future (now I've discovered that someone with a far more able dd than ds1 is getting 14 hours direct payments a week- all the time- not just school holidays- I will be asking for a high level of support in holidays). Will look at the gum tree later as well- thanks for that.

Eek must dash- have to pick up ds1 from school (don't even get me going on the fact that he's still part time and not in nursery grrr!) Thanks for the offers of software. Will accept anything to give it a go! Although we have a mac- so lots of stuff may not be suitable.

Thanks for the earobics tip as well Davros- will look into that.

I've got a Comfyland keyboard gathering dust, which you are welcome to have.
I don't know much about computers though - it needs an IBM compatible and ms dos 5.0 or higher -- any good?

Hi Jimjams
Sorry only just read this. I think most of the suggestions have been made but do you have any special need things going on at your local leisure centre? We go to a fun camp, specially for sn children and siblings can go along too. I They run it throughout the holidays and have things going on for sn children. It is very sn friendly and means that I can relax while dd and ds enjoy themselves. Do you have a carers centre near you as they may also be able to offer something.
I really wish I could offer some more advice, it just doesn't seem fair. A friend of mine that has sn twins was unaware of ss help and like you was told that she had she couldn't have any help financially. She also has another child and is on her own. She burst into tears on the phone saying how desperate she was and ss have set up an emergency meeting to see how they can help, don't know if that helps you but thought I would mention it.
I really, really hope that you manage to get some help or something sorted really soon.

ROFl about playmate! I'll have to change mine now as won't be able to think of it any other way. I'm sure you WILL get DPs, its just a matter of when. Is there an NAS branch in your area? Maybe they have some activities going on. By coincidence I was talking to someone about Fast Forword yesterday and it is quite involved and expensive but meant to be very good. I think Earobics is a very different thing but for kids at an earlier stage than FF.

Well I think SS are taking the piss! Received a letter this morning saying that they are not going to fund a playscheme place for us as they are giving priority to children who have "little or no respite provision". WTF? I must have just missed the army of helpers I have.

Anyway have phoned and left a message asking what the hell is going on and saying that I seem to be being missed by SS and have been trying to get help from them for a while now.

BH- there's nothing suitable. There are very few SN playschemes and nothing suitable for ds1- he needs one to one wherever he is.

No NAS either Davros.

FF is very expensive isn't it! Almost keeled over when I saw the price...... Found Earobics on diff roads to learning- have downloaded their catalogue now need to print it out.....

JJ - Just wanted to add that the leisure centre activities are ones where the parent stays, you don't leave them. I know lots of autistic children that go and it is very safe, doors are locked etc.

Are the doors locked to keep the mothers in?

I know- but I've tried that before and its impossible as I have a 2 year old as well. Last time I spent the time running between the 2 of them (and doors weren't locked) and in the end ds1 got into "trouble" because he kept opening a curtain to see what some people from the leisure centre were doing (setting up for the next class which sems slightly ridiculous in a room full of autistic kids). I could do that without ds2, but not with him as well.

I couldn't leave ds2 to fend for himself as there were lots of learning disabled children there who kept picking him up. So had to try and keep an eye on ds1 from afar and just charge across the room to drag him back every time he tried to escape. It was a total and utter nightmare and I've never been back!

I did try a fun day they organised before- same problems although that time I strapped ds2 in his buggy and we only lasted 5 minutes.

The SW I need to talk to is in a meeting- everytime I ring SS they are in meetings.

jimjams, no advice but didn't want you to think I was ignoring this - read it earlier this morning, took sons to school thinking about it, now making myself late for work...

I know how resourceful you are and things must be bad if you feel this dread. I wish I could say something to help. I take it you've posted about this on the other autism sites you visit? I can only hope that the suggestions here, plus those on other sites, give you some more leads to go on.

PS I'll be down your way the first week of August, if you fancy a meet up - don't know your holiday plans.