Can I just have a little whinge please?

[boredandrestless]

No one has to listen, I will have a moan then pull my socks up and carry on.

I'm fed up, and bored, and frustrated.

DS, 7 (ASD) refuses to go to sleep without me (I'm currently trying it by sitting at the end of his bed in the dark for about an hour until he gives in), two hours later he's wide awake again, and on it goes. He settles straight back to sleep but only if he's draped all over me and then he's asleep but grinding his teeth, talking, laughing, moving about! So even when he's asleep I don't get much kip! I'm constantly on edge since I woke up a few months ago in the small hours and found him sat in my bed trying to open the battery compartment of a toy with one of my kitchen knives!

Then there's the toilet training issue. He's still in pull ups for bowel movements, but is perfectly trained when it comes to wees. He's done the whole constipation/with holding cycle and is now on movicol and another medicine but still desperately tries to hold it in, I am so sick of changing pooey nappies.

He physically clings to me, he's currently leant against me - I feel I never get any physical space (he's a big tall 7yr old, in 9-10 clothes) and am finding that when he goes to school (or to his dads for 3 hours, twice a week ) I'm just spacing out doing nothing and going into a bit of a daze.

I was hired for a job a few months ago at a great place where manager said would give me the exact amount of hours I needed (16), 2 days a week same days, was understanding. Sadly they've not had enough business to take me on yet. I really hope they do eventually take me on as finding such an understanding manager has made me realise how limited I am because of my situation with DS.

Then there's my single status. TBH I'm okay with being single at the moment as don't have the emotional energy for a relationship but deep down I also can't believe anyone would take on the package of me and DS. He's in my bed half the night, constantly wanting attention or needing supervision, and TBH although he is quirky and pleasant company at times, he can also be very tiring and demanding.

I know there are people worse off but I'm just sad I guess.

So sorry to hear you are having such a terrible time of it. I'm afraid I can't offer much in the way of advice but just wanted to offer a shoulder to cry on and a ear.

Can you put a safety gate on his room? we have one on our DD's door so if she does get up she is confined to her room and therefore can't endanger herself.

With regards to the dating scene you could have a little browse on a dating site and just take your time with it and if you feel up to meeting anyone when you are ready you can.

It's a shame your job hasn't come through yet. I hope it does soon in the meantime sounds like you need a wee project to get your teeth into. I have just been made redundant so found myself at a loose end. I decided to overhaul my DD's diet all healthy eating stuff and have seen her behaviour improve. You could also take yourself off to the movies or meet a friend for coffee if you plan your week and have things organised you might feel better.

Sorry I am not much help. Hope you have a better week.

You are entitled to more than a little whinge!

First. Your 'single status'.

It's fair to acknowledge that having a disabled child (or children) will not make things easy. Of course. But remember this: the right person will not see this as an obstacle. Really. I do know this.

(I was a widowed, male, parent of 4 boys. Two with ASD. Much milder than your son's difficulties, but hard nonetheless. I have met, and married, a beautiful, clever, perfect woman. Who also has a teenage son with profound ASD, similar to your boy it seems. I love him, too. I know that she once felt as you do. But she was wrong. All the boys are here today with just me as she is away for a week with work. The right person is the right person. Don't take second best, and remember we are not teenagers, everyone comes with some baggage!)

Second. Help. I presume you have a social worker? Get one if you don't. Enquire about direct payments. We get 9 hours a week support in term time, and 28 in the holidays. Payments are made into a discrete account, and we organise the help (a TA from my stepson's school. She is FAB. She does the washing cleaning and ironing too just for fun. No. Really she does!) This help wasn't given to us easily though. We had to agitate for it, just as we had to agitate to get the right schools for our children. It's dispiriting and hard work to get there, but worth it in the end.

Thirdly. Sleep. You need sleep. There are options here, too. My stepson is sleepless, too. But he goes to his room, and there is a hook on the door to ensure he stays there. We can still hear him, and take him to the loo/give drinks etc several times nightly. But it does give some rest. Some. This would be difficult (physically and emotionally) for you I am sure. But give it a thought.

Good luck!

..and I second calamity's point about food. Gluten/dairy/additive free diet has helped our profoundly ASD boy immensely.

Sorry for the piecemeal posts. Another thought re sleep.

We were offered, but have used only once, occasional overnight respite. Again you have to agitate to get this, I bet the services are available but no bugger tells you about them until you make a fuss.

(((((((((boredandrestless))))))))

I wonder whether two mattresses next to each other with one of those bed guards between them might be a good idea? You could hold hands over the top, but there'd be a barrier. I mean, in your room for the middle-of-the-night shift. How about ear plugs for you for when you are in the same room (with a bolt on the inside of the door high up so he can't wander off and find power tools while you are sleeping?)

I reckon you're doing exactly the right thing with the falling asleep alone bit. Maybe you could learn to meditate so the time is well spent? (I did that). Or get some audio books to listen to very very very very very quietly on headphones? I have spent hours reading books under a blanket by torchlight at the end of someone else's bed... and gradually it will pass, it really will, just on a slower timetable than the norm.

I look at the friendships that some ASD children I know strike up with other people - particularly with undiagnosed but somewhat spectrummy adults - and it makes me think that there may well be affectionate, fascinating and quirky people out there who would love to become part of your family - and there are worse things than ending up in an AS/NT relationship :)

boredandrestless....I can sympathise as the single parent of a child with (much milder) ASD.
For me, the co-sleeping was helped by putting a (very low) light on all night in the room- if we travel anywhere I have to ensure there is light that he can see by at night. But I also have to accept that is we are away, he will prob end up sleeping in my bed.
I am also thinking about getting a weighted blanket for him to help him settle himself.
I still use a stair gate to ensure there is no wandering downstairs at night.
In contrast to you, mine is still wet regularly at night. But re bowels, I did find a big improvement when I moved to a lactose free diet- although my GP did not think it warranted.
I'm not surprised you are in a daze when you have some time off. Your batteries must be close to run down. And for the partner, as someone here said, the right one will come when you are ready and able. You sound like a fabulously patient mother...

Hi everyone, sorry for delay in replying, I literally had a whinge then got on with things (only option really)!

Thank you all for your kind replies, I really wasn't expecting any.

I have joined a dating site but the only messages I get are from weirdos or needy types and I've got no time for either. I feel very shut down to even the possibility of a relationship right now.
retiredgoth how lovely that you have found someone, your story really gives me hope.

I do need a project, it's just having the metal energy and the time, I may look into doing another OU course as that would keep my brain busy. Earlier on I wangled ex coming for DS four hours early and take him for the afternoon too and it's helped to have a bit of breathing space and be able to get stuff done. Finally put xmas day presents away and sorted through his toys without him here!

I have tried putting him in a bed next to mine and holding his hand, I have tried extra tall safety gates, etc. Leaving him in his room alone, locked - or even with the door shut would result in hysteria and vomiting.
The sitting on the end of his bed in the dark - I usually take a book with a little book light, and my phone to send text messages. I really want him to start to self settle but it just seems such a chore! I have done this approach in the past ( in a week I will sit by the door, then in another week on the landing, etc) and it works for a short time then BAM! we are back to square one. Plus give it a couple of hours and he's wide awake again, it's just relentless.

I think people who know me in RL don't realise how draining it all is as on the surface he just seems quirky, he can TALK (but not necessarily communicate effectively) and is funny and quirky. Even his dad doesn't get it as he spends MUCH less time with him, and he doesn't have this intense clinginess towards his dad like he does with me.

Anyway I'm rambling, thanks again all for your replies, they've made me feel less alone.

What about stairgate at top of stairs then so if he is awake then he can only have access to the bedrooms and won't be off for a rummage in the cutlery drawers?

Just try and tackle one thing at a time. It sounds like the sleep problem is the biggest issue you must be exhausted. I don't know much about it but a lot of people on here discuss using melatonin to aid sleep? Maybe you could look into that? We use Epsom salts they seem to help a little but we still have the bedtime meltdowns.

I could put a stairgate at the top of the stairs. Obviously he can open it quicker than I can but I would hear him opening it before he headed downstairs.

When he was assessed age 3 or 4 the paediatrician mentioned melatonin and I said as I could cope I wouldn't bother and would consider it if I got to the stage where I wasn't coping. Feel a bit ground down but not in that place just yet.

I've read about epsom salts before on here. Do you know if they are ok to use in bath water with sensitive skin?? DS has excema.

The ones I bought in Holland and Barrett are especially for eczema and psoriasis (I have probably spelt that wrong) Not sure if they help but worth a try I guess?
I hope you get some sleep tonight. Remarkably our DD was out like a light I bargained with her about the number of stories I would read her if she promised to go to bed with no shouting. Also the 2 hour running round the park may have helped

bored I meant a little light for him
I was reading about epsom salts here too and will try it. Also some people around here seem to think vit B's are usefull- especially B6; though I would like to see some evidence of that before starting those.

Wanna I was explaining my book light in response to ommmm's suggestion of what I could whilst sat at the end of the bed.
DS does have the same sort of light, we have recently changed the nightlight at his request from a 'starry night' type one to a lego one which he is very pleased with.

He fell asleep after about 40 mins last night in his own bed but then ended up in my bed - I got hit in the eye and elbowed in the nose during the night. I have gone through long periods of accepting the co-sleeping situation but whilst it's a reasonable solution for a baby/toddler/preschooler - as I say he is very big for his age, in 9-10 clothes, he takes up a lot of bed plus I want to try to gently discourage it as he is getting older now and it will soon become inappropriate IMO. He has also had stages of falling asleep in his room without huge resistance, but this comes and goes depending on how clingy/anxious he is.

Think i will go for a little trip to H+B at some point this week and look at the Epsom's Salts and vitamins as they've got to be worth a try!