Do you ever just feel tired of it all?

Like many of us, I have children who believe that sleeping through the night is just an urban myth. Oh the joy of having to cope with a full day of paperwork or appointments when you have had a few hours split sleep.

Sleep deprivation is torturous, as you know, but I think my body has become so used to limited sleep that I function fairly adequately all day. However, the thing I find difficult to deal with is the emotional exhaustion this role brings. Being physically exhausted makes everything seem to much worse and trying to deal with the day to day activities becomes such a chore.

Add to this the stress and emotional distress of the community we live in and suddenly there are days when it all just seems too much.

SNJ - triedI am tired.

  • I am tired of opening Facebook to read of another example of the child’s needs not being a priority
  • I am tired of waiting for CAHMS to actually meet my child – over a year since the referral
  • I am tired of cuts that mean services like CAMHS have to practice fire fighting rather than fire prevention
  • I am tired of the infighting between parents – we’re all working to the same goal so why do we spend so much time fighting amongst ourselves
  • I am tired of egos and personalities
  • I am tired of LA staff not understanding what communication actually means
  • I am tired of decisions being made about my child and my family without anyone asking us what we think
  • I am tired of decisions being made about my child but no one telling us until we chase it up.
  • I am tired of receiving letters that mean I have to add another thing to my “to do” list because our LA doesn’t communicate internally
  • I am tired of receiving letters from one department that tells me to follow a new procedure but the department I now have to deal with hasn’t been told of the new procedure so I get passed around for an hour before someone with common sense steps up to the mark
  • I am tired of trying to understand new legislation and then being told ten different interpretations that make me wonder who has got it wrong
  • I am tired of hearing the hype of how families are happy with all the current changes, when my Facebook wall tells a very different story
  • I am tired of feeling guilty if I try to do something just for me
  • I am tired of the piles of paperwork that need either filing or action taking
  • I am tired of trying to balance a diary of appointments and paperwork without a secretary
  • I am tired of not having a full nights sleep but not meeting the criteria for overnight support
  • I am tired of having to constantly search for support
  • I am tired of people not adhering to the legislation
  • I am tired of the lack of accountability
  • I am tired to know that families are often too exhausted to challenge the lack of accountability
  • I am tired of hearing about poor families going through dire heart-breaking circumstances because the support they needed wasn’t available or they didn’t meet the criteria
  • I am tired of the sheer scale of knowledge I still have to gain
  • I am tired of knowing that families with children twenty years older than mine can relate to my story as nothing has changed
  • I am tired of practitioners telling me they understand
  • I am tired of explaining my child’s behavior to people who should know better
  • I am tired of fighting to be accepted as an expert in my child
  • I am tired of managers who don’t appreciate being challenged when they are in the wrong
  • I am tired of people talking about “co-production” when it’s not actually happening in many areas
  • I am tired of trying to find time to just be “mum” and have family time
  • I am tired of trying to recruit a PA without any help

Most of all, I am tired of being tired.

I dream of this world where people genuinely work together, genuinely listen to families, communicate effectively and know what they are talking about; a world where I can cope with the physical exhaustion without the added stress of the emotional exhaustion. It’s not too much to ask, is it?

What about you? Are you tired?

I know that I am not alone. I know that we all have days when we could quite happily go back to bed and sleep for a month (if we didn’t have all the letters to write, phone calls to make and appointments to attend). We all have times when we think “why do I bother?

What motivates you to get up and tackle the world each day?

Thankfully I only have to look at my three children and I remember why I bother.  I also have a few strategies to help me do more than just crawl out of bed.

What motivates you?  What tips do you have to help others to not just get out of bed, but to get dressed, put your face on and face the world with a smile?

 

Debs Aspland
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Anthony Davies
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Anthony Davies

You have my unreserved commendations for having the courage to write such an honest and real statement about what it can too often be like as a committed parent who is doing everything they can to assure the best outcomes for their child, I most certainly identify with the vast majority of what you’ve said here. It’s not because people like us haven’t got sufficient resilience, a willingness to accept help, lack of positivity or that our oersonalities are defective. We are tired because of being constantly let down, given lack of respect, hassled and all because we love our… Read more »

Tracey Lvsherkds Dennis
Guest
Tracey Lvsherkds Dennis

Just want to say thankyou for wrighting this and being so honest. I agree with most of your statements, i also im banhong my head on a brick wall all the time with some people. Thankyou once again for sharing. Its nice to know i’m not on my own and other people face the same things as me. Xxx

josfromglos
Member
josfromglos

To start with….. I am tired of this slow working laptop! The word ‘tired’ caught my attention straight away Deb…., I even have a ‘medical explanatory’ (medically explainable?….. ah well, you know what I mean…) reason for possibly being even more tired…… I have (SP)MS myself, next to having a 17yr old daughter with Global Developmental Delay. And it wears me out! On top of that…, I have the dutch nationality (moved over in 1995, got married to my wonderful, british, wife in 1996…). Do feel sorry for my wife, who had a brain haemorrhage herself after giving birth to… Read more »

gavin elliott
Guest
gavin elliott

This article sums up what is wrong with the system. I use the word system very loosely as the “system in each authority boundary is different although the law is the same. Three additions I would add is 1. We are tired of being told we cope well and are exceptional parents when we are just normal and deal with all our three kids with the same framework and just adjust things because of the complexities of having a child with a disability. 2. We aretired of professionals in my life who are never there when we need them but… Read more »

Leigh
Guest
Leigh

As a primary school professional I feel for you and anyone else who feels that ‘professionals’ are so inadequate. Nobody should have to feel that life is to be coped with. All our children deserve the most rich and loving experiences possible. There are unfortunately ‘professionals’ in the ‘system’ who don’t ask for training or seek more able professionals to support or take over from them. They lack realistic self awareness of their strengths and weaknesses and the appraisal and oversight of their responsibilities by a range of management systems is shockingly inadequate.The journey that class teachers will have to,… Read more »

gavin elliott
Guest
gavin elliott

Just to clarify my points. The education staff in schools bar one have been wonderful and to date have delivered a fantastic bespoke service to our daughters. Similar can be said of the health professionals who respect my daughter and treat her as an individual and do everything possible to minimise all our stress. My points are aimed at Local authority managers and social care managers who have made our lives intolerable.
even the simple things are beyond them.

Yvonne Newbold
Guest
Yvonne Newbold

Debs, you have absolutely summed it up perfectly – I am tired too, of everything. If only they “got” it instead of pretending to, it would make our lives significantly easier. If only they could always open their hearts and be kind, instead of sometimes rolling their eyes and hufiing and puffing under their breath, we wouldn’t feel so continually back-footed and undermined. If only – I could go on until I never stop. Thank you for putting into words exactly what thousands of us feel. Beautifully written, and every single word resonates. Yvonne

Romany
Guest
Romany

Thank you for an honest article. I’m tired too. You asked what motivates us though… – for me its optimism that it can better – that the law now supports us as equal partners (ok, so more optimism required with regard to the reality) – that most LA staff are also hitting their head on a brick wall, and genuinely want to make things better (they’re not doing it for the money!) – that some LA staff recognise the limitations, don’t take things personally, and accept other ways of doing things – that co-production, when and if it happens, can… Read more »

Fiona Davies
Guest
Fiona Davies

I’m tired of trying to communicate with people who are either in meetings or on training courses all week. I’m taking a six month career break because I wasn’t able to get to work with all that’s going on at the moment. It’s going to take a bulk of my savings but I have no choice.