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.

sweetheart you are not the only one dreading school holidays. we dont have the situation u do, but with being at the start of pregnancy myself and wanting to fall asleep at 7pm each night its gonna be a long six weeks. i can totally sympathise with u, especially about being crap when pregnant (so far no morning sickness but bad heartburn) my eye sight also seems to go screwy when pregnant, probably due to the fact i'm exhausted.
have u called a disability group at all? we have action on disability here (something like that anyway) and they may know of something/someone to help u.

The nursery would have him, but they need a 1:1 helper for him. It's that scheme which has no funding for him. Really there is nothing, I have searched everywhere. There are schemes for disabled kids, but they are totally unsuitable for autism, or they need the parent to be the carer helper and there's no way I can manage ds1 and ds2.

We're going to Ireland for 5 days or a week, so there's only 3 days spare for dh anyway. We need to be careful with holiday as we're going to need it at xmas/NY when no 3 is born.

My mum and dad are great- but both work full time. My mum already juggles work to look after him when I have antenatal appointments etc so I can't ask her for any more help unless its really important iyswim.

Didn't know you were pregnant misdee! Congratulations!!!

Jimjams, I know I am a new MNer and what I say doesn't mean quite so much but FWIW since I've been lurking/posting on here you have really struck me as a competent, together person who a lot of people on here respect a lot. If anyone can get through this unfair, challenging (to say the least) situation then I'm sure you can.

It sounds to me like its time to call in the troops. Friends, family, anyone. Are there any other MNers near you? I know its something I am really crap at as I always think 'oh everyone else has their own life and own issues' but I really think the most important thing is for you to 'stay sane'. If you could get just 6 people to spend one day with you then that's one day a week you'll have help/support. I'm sure its hard (near impossible?) for you to leave ds1 with many people but maybe if you just have friends with you it will make things a little more manageable?

I know you know this but sometimes I think it helps to have someone else reinforce what you know IYKWIM (what?! )

i'm sorry, i've got no advice to offer just wanted to sympathise - it sounds awful, and pg too - oh god. i know your ils are rubbish but i think you said your family are pretty good? could they offer some help? could you switch everything to internet (shopping, banking etc) so you don't actually need to leave the house for basic chores? could your dh pick up more of the household stuff so you get a bit more rest? any other mums of auti kids (i just wrote autistic mums and deleted it!) around who you could swap with to get a break maybe one pm per week? the above all sounds so basic i'm sure you would have done it if you could... i really do sympathise and don't think your feelings are unreasonable.

oh sorry, i wrote that w/o checking your subsequent response to similar suggestions

if u can afford it, get milk delivered. its one thing we always run out of, and it helps lknowing that if there is 1pint left at night, 3 more is coming in the morning.

Everything is telephone banking etc already!

No chance of swapping with autistic mums- all our kids need full on one to one. My friend with an auti dd does visit but last time she was here she escaped and the time before got into the medicine cabinet and ate day nurse- so trip to hospital followed. Not very relaxing! Although more realxing to visit her house (apart from having to lift ds1 up every 5 minutes to see the neighbour's washing lines- but I can live with that). The good thing about seeing that friend is that ds2 and her ds get on really well together. I have one other auti friend I see quite a bit but her dd can't really tolerate other children very well so we can't meet that often in holidays. I have my "normal" friend as well - but she's pretty busy with 4 kids. And that's it really. There isn't anyone else we can see. The pregnancy isn't really an issue other than to put me in a permanently bad mood. I don't really know any other people down here (autism tends to severely limit your social life)- not people I could visit anyway.

It's not so much that we don't see many people- it's more that I need to provide something for ds1. He really needs constant 1:1 otherwise he just stims. I can't set him up with something and then leave him to play with it- he needs to be shown how to play the whole time. And I can't see how I'm going to provide that. At the end of 6 weeks he is going to be blank. Can't hoover/ use the washing machine when he is around as he goes into overload poor thing.

What I need is out ABA tutor on a daily basis over the summer (no chance!). She works shifts so if it suits her I may get her to come during the week rather than on Saturdays on the weeks she can.

No milkmen round here apparently misdee! Bizarre isn't it- always used to get milk delivered until we moved here.

sorry, jimjams, was sure you would have thought of all the basics already. hope you can get some salt students or the tutor can change her shifts.

that is very weird. mind u, he doesnt deliver everyday here, just doubles up on some days.

Really feel for you. I am very lucky to have ds1(11)he is so helpful, if it wasn't for him I would find it really hard to manage ds3/4 when out. I would try for a childcare student to help with ds2 and maybe that way you could manage some early morning park trips with you supervising ds1. Do you use a double buggy? I still put ds3 in the buggy and he has began to use it as a refuge when it all gets too much.

If you can try to theme some days. We do water days, baking days, art days and so on.

I think you will have to accept that ds1 will be very stimmy but that you cannot help that and you will be giving him the best you can.

Ah I'd love an older sibling!

Ds1 won't go in the buggy- that's why we can't really go out anywhere. When he would do that I could at least go to Somerfield etc.

I'm trying to find SALT and OT students for ds1 at the moment. It might be easier to find someone for ds2 though I guess.

The trouble with theme days is that ds2 is really interested- he helps me make bread every day anyway, but ds1 isn't remotely- and if I do manage to get his attention, keep his attention, persuade him to do something then ds2 crashes in very enthusiastic and ds1 just gets up and walks away. need 2 people again.

I think ds1's complete lack of adult directed attention is at the root of the problems really. If I could get/keep his attention we'd be alright.

I may work hard at getting him able to use a computer as that is something I guess he could become obsessed with and independent at.

Any ideas for software? I have switch it at home (building washing machines etc). And he quite likes dk toddler school. Most things use too much language though and he switches off.

Jimjams, what about homestart? Not ideal I realise but it could buy you a few hours of sanity. I am sure that if they run in your area you would be at the top of their list for help.

If you can get your shoping delived by Sainsburys/Tescos ....again not ideal but at least manageable.

Keep on at SS, not for this summer but for the other holidays to come. The earlier you can get them to fund something the better. Throw as many wobblies as you can and use your 'condition' for all it is worth. SIL used to do respite care for autistic twins. It was good for them and a life saver for their family.

And most of all STOP FELLING GUILTY! Bloody hell, Jimjams I'd colapse if I did half that you are, and I'm not pg.

My Ds can manage some of the Disney softwear, and that isn't too language driven. He enjoys Finding Nemo and Buzz Lightyear

message withdrawn

Loads of sympathy, jimjams. I really, really don't understand how the playschemes for disabled kids down your way can have been set up to be so awful for children with autism. What on earth are they thinking? Do they actually refuse to take autistic children or are they so dreadful that you can't entrust ds to them?

I'm desperately racking my brains for ideas but not getting far... Please ignore the following if, as I suspect, they are totally unrealistic for you but just in case...

Would it be worth joining in activities with one of the playschemes that demand parent help during the mornings when ds2 is in nursery? It might at least break up the day a bit, perhaps. Or how about having a chat with one of the organisers to explain that the combined might of ds1, ds2 & bump will effectively prevent you all from participating and seeing if there are any volunteers or staff who could help you out if you all went along?

Or is there any hope of paying for a childminder to take ds1 for a day or a morning a week? I do realise that finding someone well trained and/or capable enough might be a long shot but there must be one or two childminders who are experienced with autism, surely? I'm assuming you've already tried the childcare information service for your area for playschemes and childcare generally? If they have said/say there's nothing I'd ask some pointed questions about their inclusion policy, I think. Is there a play service for Plymouth or the South West- inclusive play should be high on their agenda if there is one and it might be worth quizzing them about any activities they are offering. Are there any Kidsactive type specialist adventure playgrounds running play sessions during the summer?

Wish I could believe that something in here would be useful. Will post more if I think of anything else and meanwhile am sending shedloads of cyber sympathy.

Crikey jimjams I didn't know you were pregnant... how did I miss that? Congratulations - when are you due?

Anyway will have a think... am wondering myself what to do in the holidays...

I know I am very lucky to have the older boys. Ds1 is great, I feel that he has a lot of responsibilty on his shoulders though. Whenever we go out he always plans strategies for how ds3 will cope.

As for software ds3 likes a game called "Rayman Maths" (lots of numbers on screen, Rayman travels through magic world ordering numbers and sums) It would require good co-ordination I think. The others we have are Pingu, Noddy etc.

The attention thing is real toughie. I have been told for ds4 to try and join his agenda rather than impose my own. I am lucky that he likes trains and books. If your ds1 has no interest other than stimming behaviours that will be really hard. Has he got a vtech type computer toy? My ds loves his. It plays nursery rhymes, alphabet, numbers sums etc. He does tend to repeatedly press the same key but it does hold his interest. Also got a lightup keyboard. My ds3 is very keen on music.

boobahs is completely text-free if he likes them at all?

Trying to think of something but no useful ideas yet. I'm dreading the holidays too. We're really really really hoping that the local playscheme will be able to take ds1. They're visiting tomorrow to meet him.

Will keep thinking...

Jimjams, I'm afraid I don't have any suggestions either but as Heartinthecountry says, you are one of the most respected mumsnetters because of you sensible help and advice to others and your general resourcefulness so I know things are really bad when you are struggling. You have my every sympathy and I hope you get the best student to volunteer to help out as you and your son definately deserve it. I am only sorry that I can't think of any other suggestions to overcome the problems.

Hi Jimjams, could you get one of your neighbours to be your milk/breadman, you know ask them to get you fresh things once or twice or 3 times a week and not only would that solve the going out problem but it would be an adult at the front door for a few minutes instead of just kids kids kids!
For cabin fever get some things set up that he can play with/throw/ or whatever in the garden whilst you put your feet up?

Jimjams, I totally sympathise especially on the hating pregnancy front. Here's an idea - as you know, my sister does Lovas with an autistic boy and a few years ago she went on an exchange to Australia where she stayed with some people for nothing and in return did some Lovas every day with their autistic son. Is there any way you could get someone like that, i.e. someone who has experience with autistic children (not necessarily Lovas, just experience) and wants to visit the UK who could stay with you for nothing for 6 weeks in return for helping with ds1? You live in a great part of the country for persuading people to come and it would buy you at least a couple of hours a day. If you think it's worth finding out more about I can ask my sister who organised it (no idea whether it was through an organisation or just friends but I could find out) and let you have the info. Or you could just try advertising and see what happens? And you don't need a kick up the arse IMNSHO, you need some help!

I haven't looked to see if there's a noticeboard but there's an Australian autism site here . I have visions of a strapping, energetic, kind Aussie twentysomething looking after your ds before going off to find the surf!