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ITS HARD WORK!

(12 Posts)
AngP2585 Wed 29-Jan-14 21:53:27

Just thought I would vent my frustrations at how hard it is raising a disabled child.
It really takes it out of you mentally and physically. Nothing is ever straight forward every daily task is a fight! Any normal task is never straightforward from getting dressed in the morning to getting out the door for nursery. Life to me seems like a big ball of stress!
Sometimes I think how the hell did I just get through a day!
Between the tantrums, meltdowns, refusal do do things, constant demands and bad behaviour. I have really high anxiety levels. I worry about what might happen before it actually does but most of the time I am right!
How do you all manage?
Well I suppose I could ask myself the same question, the answer for me is just have to get on with it and that's the way it is!

PolterGoose Wed 29-Jan-14 21:56:34

I have to focus on the positives, I keep working on all the hard stuff, keep learning, keep trying, vent and celebrate on here. I make sure I have time to myself and find time to do what I enjoy.

AngP2585 Wed 29-Jan-14 22:02:55

Maybe that's part of my problem his demands always come before mine to keep him happy for a bit of an easier for!

CandyJournal Wed 29-Jan-14 22:11:37

AngP2585 - I just take one day at a time, I have found that this site can also help as there are people facing the same problems as myself and they have a lot of advice and strategies for me to try. Hang in there smile

Jacksterbear Wed 29-Jan-14 22:40:20

I don't have many answers but I certainly hear you. wine/brew

autumnsmum Thu 30-Jan-14 07:59:08

Ang after a morning where dd2 has got on her school bus with a pyjama top on under the stripy dress she always seems to be wearing I hear you

Perchkin Thu 30-Jan-14 08:56:38

I hear you Ang. It is hard. And it never stops.
It amazes me how some people have no idea that my DS has ASD, SPD and (probably) ADHD. But that's because at home and out and about we control everything - where we go, what we do, how we do things and all the prep prep prep for anything. When I am with him I can pre-empt almost all his troubles and modify the situation as and when I can. So mostly he copes and is happy. But the incredible amount of effort from his parents to get him to that point is staggering!

I'm actually OK getting through all the day to day stuff, the planning, the meltdowns, the behaviour - exhausted and stressed (and sometimes to my shame I do get cross with DS sad), but manage OK. It's those things that are out of my control that give me such anxiety. DS's problems at school, the constant letters and meetings and telephone calls and never being able to take my eye off the ball, and not being able to sort it all out for my DS so that he has no anxieties of his own sad, and the future, I worry about his future - from tomorrow to next week to when he is a teenager, an adult...

I have (had) a really high pressure stressful job, that demanded my attention 25 hours of the day. Trying to cope with that, and my DS, and then my own sudden ill health, caused me more stress and anxiety than I could cope with. One thing I personally found really helpful was "mindfulness". It takes some practice and I used a combination of books, cd's and classes. But it really helps when I am anxious and stressed. It helps stop the worrying about what might happen and lets you focus on the here and now and all the positives.

Autumnsmum - that has made me smile, Bless your DD2. Will school be OK with that?

Jacksterbear Thu 30-Jan-14 09:47:29

Perchkin you have just described my life spookily accurately!

And autumn, DS has gone in in tracksuit bottoms, hoody and snow boots - again - today.

brew and cake all round.

PolterGoose Thu 30-Jan-14 09:51:15

Perch well said, same here, I feel ok and reasonably capable most of the time, it's all the school crap that is utterly soul-destroying and exhausting.

autumnsmum Thu 30-Jan-14 09:58:07

Jackster that made me smile thing is dd2 has a wardrobe the size of Liz Taylor's but her current fave item of clothing is a handme down dress from dd1 . The thing I'm finding toughest at the moment is balancing the three Dcs two of whom have autism I feel
Like an ovetstretched piece of elastic

bochead Thu 30-Jan-14 19:13:05

DS has always been OK in terms of coping.

It's the caring carrots that have threatened my sanity over the years - I still can't understand the obsession with endless meetings that go nowhere. If the professionals actually did the jobs they are paid for, & just occasionally used a bit of common sense, I'd still be working, would not have gone grey etc, etc.

AngP2585 Thu 30-Jan-14 22:38:26

Oh I 100% agree these so called professionals that are supposed to help you do sweet FA! They just tell you what you already know and say you are doing all the right things. It does my head in!
Sometimes the coping can get a bit too much no wonder I am on medication for anxiety. Nobody understands how hard life can be with a special needs child unless they are bringing one up themselves. It does get you down at times but the only way you get through is by taking each day at a time and not thinking too far ahead into the future about what might or might not happen.

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