Self indulgent pity party- I need to offload!

[popgoestheweezel]

Just feeling a need to get some of this out of my head cos it's going round and round and doing me no good at all.
I have had a dose of kalms and a sleepy tea but my heart is still racing and I'm feeling so super anxious.
Ds is just in the worst place ever, his behaviour is absolutely intolerable and has been getting increasingly bad without any let up since Christmas. We used to have periods like this but it would last a few weeks and then we'd have a time where he was better but we have so few windows of brightness recently, i can't recollect any good days for months and I've certainly cried everyday for months on end.
It seems that everything I try to get some normality results in some sort of backlash. Eg. We went to some friends where their older boy played with ds and they had a fantastic time together but then ds absolutely kicked off when it was time to go and carried on for an hour when we got home. The next morning he starts on the same again and he keeps bringing up that he didnt want to come home and having a breakdown again- he's just constantly doing it (over this or a dozen or so random 'issues') and it's driving him and us completely mad! I spend hours going through cbt style chats using books like 'what to do when your temper flares' but its like trying to hold back the tide. (Reminds me of another of the many hour long freak outs we had when the tide wasn't out far enough when we went to the beach on holiday)
I have rung Camhs again for more help and they said they would call back... Still waiting... (waste of tucking time anyway cos they didn't give a shit when we saw them last).
My m&d try to help us but he is difficult for them to entertain (he wants other kids to play with), my sister has told me that she doesn't want ds to be around her son,, loads of my friends are on holiday and even someone who has said she will have ds 'anytime' has now told me that although she can have dd to play with her dd tomorrow her ds won't be there so she can't have my ds- I wouldn't mind too much but dh and I are going to a funeral and I just needed her to have him for an hour and a half! I had already told ds he was going so no doubt world war three will kick off when we break the news that he can't go.
I contacted a local charity for support three months ago (and since followed up with three more phone calls) but I am just on a waiting list so no help there.
I am trying to find a nanny/babysitter person but we have had a nanny before who it turned out was stealing from us so it's not an easy decision. I employ people at work and they seem to be letting me down all over the place as it is so do I really need another person to let me down and even worse let ds down too.
I have to start gathering myself to apply for a statement as ds is really going to need it next year but I can't find any energy. I am self employed and I have so much work to do but absolutely no time to get it done and I feel like I'm surrounded by other mums who either work in education or not at all so don't have the same hassles I do let alone have to deal with sen on top of working and I really resent it. One friend today who is a teacher so off all summer and going on holiday for two weeks tomorrow has just been moaning about her nt son as he didn't want to get a bath! She knows ds has PDA, she knows that getting him in the bath takes both dh and me working together an hour and involves screaming, shouts and tears from us all, she knows I am trying to juggle running a business and having a family, she knows that dh and I can't even consider a holiday abroad with ds (he would never cope) yet she still bemoans her minuscule troubles to me. And I want to say- just swap lives with me for one day please!
I am so fucking tired and I just can't see how to move forwards right now.

Huge cyber hug sent your way. No wonder you feel as crap as you do and yes your friends should try and accommodate a bit more knowing your predicament. On a practical note re babysitters I would thoroughly recommend Sitters www.sitters.co.uk/. I have used them for short notice babysitting a good few times now and have always had the loveliest of babysitters that I know would have coped with a demanding child. It is worth giving them a try and get some time for yourself which you so obviously need. Sorry can't be of more help but hope tomorrow is a better day.x

Thank you. I have three babysitting people lined up to come and meet us next week so hope one of them will be suitable. I just wish ds was not so unhappy and angry and explosive so much of the time. it is more than anyone can be expected to cope with but I guess one of the biggest problems is that to the outsider it looks like we're coping really well (I guess we are given the circumstances) but it is just so gruelling day after day after day... I got upset the other week when I was chatting with a group of friends and someone was complaining that their child hasn't been to stay the night at their grandparents for 'over a month'. its been years for us. We did have an evening out lined up a while ago (dd at a friends and ds with g&g) but unfortunately dd was extremely poorly so we had to cancel our table at the restaurant and stay in with a bucket and some disinfectant! Unavoidable, but it will be weeks/months before we get another chance. Dh and I have no time at all as a couple, it's just 75% parenting and 25% working, that is all that's in our lives. Neither if us have time for a hobby or much of a social life even though we do try to carve out some time it's so difficult.

Well there are always people better off in terms of support than you and always people worse off (we have no parents alive and no relatives that live within 250 miles) so it is best to stop comparing yourself to others. This is a road to resentment.

I was trying to arrange visiting my pal this week but she texted to say they were off on 'a cheap break to Tuscany and Umbria' while her parents in law have her kid for THREE weeks and cheap my arse! We will be stretching it to book a few days a way in a cottage. BUT .....we are still much better off than many, many others. And that is the way I chose to look at things to stop me going mental

So maybe try a bit if CBT on yourself. Your son is floundering at holiday time. Sit down and plan with him what you can do and give him plenty of warning of how long you will be going places or changes of plan.

Get the babysitter in and plan out the rest of he holiday.

Book a night out as soon as possible and get a break if you can by getting the babysitter to watch him while you take some time to yourself.

Chase up the charity.

Get your SA application in now. It doesn't have to be long to get the ball rolling. Look on IPSEA's website for an example.

But above all STOP comparing other people's lives resentfully to yours. Who knows the truth of anyone's life? Even if they have easy children to deal with, easy lives with lots of support and pots of money, so what? It doesn't change anything for you and will only make you resentful and depressed.

At present, with DS out of school, I don't even get breaks in term time and have to work weekends and eves to compensate for having DS daily at home.

I have given up a career to freelance and the reduction in pay is hugely significant.

We are in rented accommodation because we didn't want to commit while we don't what is happening with DS.

I am also the primary carer for an older brother with cerebral palsy.

But, you know what? No one really cares about any of that save for me! The reality of my life is still far, far better than many other people's and I have two kids I love.

I don't say this to be dismissive but to emphasise that you have to adjust to what your life is, with help if necessary, but then you just have to live your life as best you can as you only have one life and there are many, many worse off.

Nothing practical to say... just have more cyber hugs and more of these then later some of this

Some great suggestions above.

I really feel for you.

I do try to avoid comparing my life with others, its just that when people subject you to a 20 min monologue on their seemingly minor stresses it's hard not to! I know there are millions who would swap for my life and I try to count my blessings every day.
I am cross with this friend who let me down today as it seems like she made profuse and generous offers (in front of others) then when I ask for a very minor favour when I actually need it she initially agreed, so I told ds, and then texts me to back out for no good reason.
I have a funeral to go to today of a very dear old friend of my parents who I have known my whole life and tomorrow I have a situation to deal with a member of staff at work which may result in them having to be sacked, I struggling to gather together the energy to deal with it.
I am a very positive person yet when I have to collect ds from school I am physically shaking as I know he will kick off as soon as he is in my charge. He punches and kicks and scratches me all the time screaming and shouting as soon as I collect so I can no longer do that on my own, dh has to come with me as one person cannot do it alone. He does the same to dh but it is just that dh can restrain him more easily.
Obviously this cuts into our working time massively and so we have far less income than we otherwise would.
We only bother with the absolute bare minimum as far as his personal hygiene goes, he has a strip wash whenever he can tolerate it and his choice of shower/bath on occasion. He probably only cleans his teeth about four times a week, its such a battle I often have to give up. If I remove the pressure entirely he will go weeks without! Luckily, the one time in his life he managed to open his mouth for the dentist he didn't have any decay.
Polter, you are right he is trapped in a negative cycle and we do everything humanly possible to help him out of it- we are like a pair of children's TV presenters with the level of engagement, humour and distraction required, it's just impossible to sustain it 24/7, especially when it has gone on for 7 months without an uplift.

pop I really feel for you. It is very hard. And not remotely fair. Although I expect you gave up expecting fairness some time ago.

Thanks, yes I definitely gave up on fairness a very very long time ago.
I have just rung Camhs for an emergency appointment and got one next week- dh thinks we should be thinking about medication. I've always thought of it as a last resort but I think we may now have reached that point. Me, dh, dd and ds are all living a hugely stressful life and that can only have negative repercussions on our health. If medication for ds could ease that then I think the benefits might outweigh the disadvantages.

If there is a medication option then it must be worth a try. You can always stop it if there are unmanageable side effects.

Well there certainly are unmanageable side effects with his PDA it can't be much worse!
I have also just rung someone about osteopathy to see if that might be a possible option. If we do decide on medication I want to feel we've explored as many other options as possible. There seems to be plenty of anecdotal evidence that osteopathy can be helpful for some children with asd and I only have time and money to lose by trying it.

Yes, osteo has helped relax my son. Hope it helps.

Really feel for you. I remember well a similar kind of breaking point type moment with ds a few years ago. What helped me was acknowledging that I couldn't fix things anymore and I needed much more outside help. With ds that meant respite, sn playscheme during holidays and medication. The medication helped clam his anxiety and behaviours. The playscheme etc gave me a break from the constant round of trying to entertain him in a mainstream world. I know these things might not be applicable to you but I would definitely think about getting in outside help for your sanity. I totally identify with your feeling that you never have time for normal life as a couple anymore. Dp and I spend most of our time looking after one of the children each as they don't cope we'll with each other. It is just bloody hard.

We are the same, taking one child each in an attempt to have a taste of normality- thank goodness we only have the two of them.
Dh and I have just got to find some space for ourselves as individuals and as a couple, if our relationship was to break down it would be the biggest disaster for our family so we must do everything we can to keep it strong. I have been talking to some charity about counselling too, just trying to explore as many options as poss.

Hi pop, I've only just seen this thread but wanted to give you a really big (((hug))) as I know where you're coming from. I could have written much of your op (as I've said before your ds sounds uncannily similar to mine) and we have had a rough few months too.

We are jjust back from a miserable week in Devon most of which I spent resentfully staring at "normal" happy families who seemed able to do "normal" happy things together. There is a bit in "the explosive child" that I keep thinking of and find reassuring when I find myself resentfully comparing: the bit where in mum says it's ridiculous that she can't go to the supermarket with her child and she knows no-one else who can't do this, to which the reply is "you're not on the same playing field as people who don't have a problem with their child in the supermarket".

We were on a narrow jetty one day last week and I was incredibly stressed hovering over 2yo dd, steering her away from the edge and terrified she was about to fall in the water at any moment; then I realised that this is (metaphorically speaking) how I feel with ds THE WHOLE TIME!

I so know what you mean about feeling like a children's tv presenter and it being absolutely exhausting trying to hold back the tide all the time. DS is starting OT for his sensory issues in Sept and I'm desperately hoping this will help with his anxiety levels; and the paed has also recommended CBT so we will look into that.

Anyway sorry for rambling and hope you're feeling a bit less down today. and more (((hugs)))

Hi jackster, thanks for stopping by. I also spent most of our endurance test holiday wondering what it might be like to be one of those normal families, I know I shouldn't but it's so hard not to. Of course, there are always people worse off than you, but it really doesn't help to tell myself this. I broke down on an evening out with some friends a few weeks ago and they were all shocked to hear how bad things are for us. I always try to look on the bright side and remain positive but sometimes it just spills out. My friends have told me that I mustn't keep it all in as it is bad for me but then other people tell me to be positive... I can't win! Anyway, atm I can't even mention ds without bursting into tears so I just have to avoid it wherever possible.
We can't go out at all atm anyway so it's not hard to avoid. dd was at an activity just down the road on Friday so I was at home with ds. Over the course of the day i made absolutely zero requests of him, just let him do exactly as he wanted yet several times I had to fully restrain him (ie. get him on the floor and straddle his legs to prevent kicking while holding arms and keeping away from his teeth). When I needed to pick dd up ds would neither walk there or go in the car no matter how attractive a proposition it was or how much I 'forced' him, it wouldn't have taken more than 5 mins there and back either. So I had to ask dh to go from work and collect here for me. it is truly pathetic that i cannot even get him out of the house.
I asked CAMHS for CBT and they said not appropriate for ASD.

pop I don't think anyone I know irl gets how bad things are for us as they can't see how relentless it all is, all day every day! Come vent on here any time! I find it such a comfort to know others on here get where I'm coming from.

Interesting re CBT and asd; that makes sense of something the paed has written in her report on ds (that she recommends CB if PDA is not diagnosed). She dx'd SPD and anxiety but thought he is not on the spectrum; but did agree to refer him to the Elizabeth Newson clinic (who are seeing him in oct) for PDA assessment. We are also awaiting nhs assessment (we saw paed privately).

It is that relentlessness that really drains the life out of you, even when ds is having a good day we're still on constant alert because he can switch from Dr Jekyll to mr Hyde in a matter of seconds. Our social life is completely non existent now as we can't have friends or relatives to us without massive stress nor can we go to their houses without incident. Just going to g&g for Sunday lunch last weekend was an ordeal!
I don't really know what Camhs can offer us other than medication, what is on offer for asd?