Here are some suggested organisations that offer expert advice on SN.
What to do when the brave front starts to slip?(14 Posts)
I feel like I'm struggling and my carefully constructed brave front is crumbling. I'm tired, very tired, the house is a tip, the kids are thriving though but I feel dead.
I feel as though I have survived the last 12 years and the couple before diagnosis but now I need a break because I won't survive the next twelve otherwise.
No extended family, ds on chemo (with all the associated worries and side effects) two with autism, three others, a job I hate etc etc.
Who do you turn to? Friends nod but don't get it? One I confided in is now describing ds's autism to her GP in the hopes of DLA for her ds (god knows how she's going explain sudden lack of speech and stimming starting at 14!!!!). I am so fed up of it all.
ASdx2 am writing this just to say that I had read your post and I didn't want you to think that noone had IYSWIM.
Am in danger of being another person who nods but doesn't get it - noone ever does 'til they've been there.
Would your GP be at least a starting point? Or someone at the Austistic Society?
To say that you have a lot on your plate is an understatement.
Keep posting or googling for yourself.You are not alone.Take some time out.U have a lot on your plate and you are brave.
So sorry to hear you are having such a hard time.
Do you have a social worker? Do you know of any support groups?
Vent on here, it will help!
Sorry I can't be much help, as I'm fairly new to all of this (1.6 years compared to your 12) and you probably know more than I do
You have alot going on & are entitled to crumble, don't be hard on yourself.
Firstly if you get sick pay, go to your GP explain how you feel & get him to sign you off with exhaustion.
NO one person can do it all & you need a break.
You may be surprised, when you hold your ahnds up & say I'm not managing people may step up to help.
& don't feel guilty about taking time off, it may be just what you need to survive long term.
Contact Social Srvices & ask for a Carers Assessment - you are entitled to an assessment by law - don't let them fob you off with "no budget" excuses.
With 2 disabled children & a dh with a long term illness YOU are the sort of family SS should be helping.
Ask for what would help YOU the most, respite, a cleaner, whatever you think.
If you go to your GP first it may be that he can supprt your request for help.
I agree that you should try to get signed off work for a while and try to get Social Worker to help (last thing you want to do I expect but might be worth it). I hesitate to suggest it, but my DS (severe ASD) is also 14 and I have a DD who is 6.5 (NT). The combination is a killer, especially as I am nearly 50, argh! But our situation does not compare to yours. Have you considered any sort of residential setting for your DSs with ASD? We started with one weekend per month of residential respite after 10 years of NO holidays or any real sort of break (also no extended family of any use) and it really made a huge difference. Of course we had to be confident that DS was happy at the place and safe and it has to be available to ask for in the first place. If you contact Soc Worker try to be insistent about asking for it, if nothing else it will prompt them to give you more help at home.
I think we can survive balancing more and more impossibly on our shoulders (with no time for any self care or support networking)until one extra thing threatens to over topple it all. And you certainly have a lot balancing on yours!
I agree with the others - you need a break (or lots of little breaks) to recharge! Ask for a carers assessment from ss. In theory they should respond within 2 weeks and get the ball rolling. Your gp should be able to help too.
You asked what we do. Well I suppose I 'crashed' (or rather my health disintergrated) some while ago (so not even 10 years of parenting). I had almost no support networks, (gradually lost contact with friends in the nt world - we have such different lives) at all and family are all far away. The house was the pitts and I was far too ashamed to let anyone see it!Eventually I got a carers assessment and it looks like we may get some respite for ds and direct payments. Our local parent carer group run some short courses (I never made time to join in) things like a relaxation with tea, chat and massage on hand! In looking for a potential sn carer (in case we get DPs)I came across someone prepared to help with a house tidy up at an affordableish rate. I am now looking to build up some support network and am attending a time for sn parents course aimed more at those with older sn children. I am still ill (so not working) but plan to ask for leave of absence from my pt work - and claim carers allowance instead ( similar financially) untill I get properly well.
I hope you find a way too.
Just knowing there is some help on the way is supportive.
Hello asdx2 - definitely get as much help as you can get out of anyone. I have someone to help clean, a childminder and a kids club to help me out and that just about keeps it all going with 1 SN child and 2 NT children. Sometimes the brave face has to go - it takes up too much energy. Is there any way that you can get even a couple of hours to yourself a week that doesn't involve working/caring? Time off work sounds reasonable in the circumstances or if not feasible, have you got flexible working when you are there?
Asdx2-How are you? How are things?
I think it is important to let the mask slip sometimes.Have you heard of a magazine called Waving not Drowing,which is free for mums who work full time with sn children(or pt for that matter)My ds is 21 and I have crashed several times over the last 21 years.
Here are some tips:
A break.Not easy to fight for if you are in a a difficult place emotionally.Could you be selfish for a bit to tide you over by doing things you really want to do eg shopping,metal detecting,coach trip,anything just for you.I used to go on Coach trips and still do,on my own,as sometimes it was the only way I could get a break.
2.Look up any Caring Organisations and ring them for magazines,reading other peoples experiences for example does give you strength.
3.LUSH-have a lovely long bath and get those battery candles,quid from pound shop.
4.What does your son love to dO? Watch videos for hours,spin a jar for hours,to hell with it,let him do it,if it gives you a bbreak.It took me 10 years to understand this.A SW asked me to write down what I did with my sn ds.She nearly fainted when she saw his `timetable`.I then felt I had permission to let him do his own thing.It worked.BTW,she wasn`t a SW she was a behaviour specialist.
5.Finally,get hold of this book and read it:OVER COMING DEPRESSION by Paul Gilbert.
I am not suggesting you are depressed but it wwill take the froth off how you are feeling.
Good Luck and please remember you are not alone.
Hello thank you for all your messages, today is a better day thank goodness. Sometimes it just feels too much, today it's bearable. I think it helped to write it down and just acknowledge that I have a lot on tbh.Spoke to dh (he's on chemo)and we have decided the job is going to have to go. It wasn't too bad when he could take up some of the extras, he's ill and worn out just working, but now it's just too much. I need time to myself occasionally instead of trying to pick everything up at home too.
I worry I think of the effects of the stress, the lack of sleep and the exhaustion, I need to think about me for a bit (not that I'd forget the others)
One day perhaps I'll shout for help in RL but too stubborn to admit it just yet.
Thank you again, brave front almost back to full strngth
Asdx2 - Glad you are feeling better. I had a 'moment' last week too, just broke down in tears, normally quite a strong person.
Not much help to you, i know, but i know the feeling
so pleased to hear that you are feeling better .Take care xx
Hi - glad to hear that you are feeling better. You're obviously a 'battler' and that's a good thing but remember that your OP was what to 'do' when it all gets too much. Perhaps it would be good to ask for some help in RL now, whilst things are on a more even keel; before things get on top of you again? Some of the suggestions made re help to get seemed very sensible, much more useful than those of us who were sympathetic but clueless .
Glad the brave front is securely back in place!
Yes please give your needs (whilst your dh is ill you are the lynchpin for your family) a high priority!
With the benefit of hindsight I can see that me failing to do this (the lynchpin in our home - dh works away often) at least contributed to my health collapse!
Do think again about asking for help now as a carer even if it is only short term to relieve the pressure from the extra stress of dealing with illhealth. SS considered our needs as a family to adapt to (my) ill health and specifically needing time as a couple with dh to adapt for the uncertain future and debrief and support each other. It has taken several months from first asking so it is better to ask sooner than later! I put off asking for help feeling we were not needy enough - that I could cope.
Stay well and take care!
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