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.
I 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?
- Accountability: the number one change you would like - March 7, 2016
- Life Skills – are children with VI missing out? - March 2, 2016
- Tests:Do you and your child find them testing? - February 3, 2016
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 children. Thankyou for such honesty…
Thank you Anthony. When people take the time to leave comments, it helps us to remember we are not alone in this Jungle 🙂
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
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 my daughter, as she has to deal with the two of us on a daily basis! (she has recovered for as far as possible after the stroke)
You said it beautifully Anthony…. you too have my “unreserved commendations”.
Talking about being let down….. I will never forget the day that I visited a football match of my then 9-10 yr old son…. To give my wife a break, I decided to take my daughter with me, although she is not at all interested, unvolunteerily, in my son’s ‘antics’ (is this the correct word?). I thought that I could just let my daughter wander around while watching the match… However, I did not realise that there was an ‘opening’ in the fence/bushes surrounding the pitch, and of course my daughter found it…. She leapt through and before I knew it, she was standing in the middle of a very busy road…
I screamed my heart out, meanwhile slowly limping to the road…. None of the attending parents moved, something I have never forgotten about. Luckily, a car stopped, holding back the other traffic…
On the other hand, during another visit with my daughter, a lady connected to the opponents, recognised my daughter’s ‘absence’ and offered me a helping hand….., she told me that she was a carer by profession and could see my problems with walking. A positive moment never to forget!
I do not visit matches that often anymore (staying in the car does not count…), for reasons mentioned above plus the fact that a cold surface has a negative effect on my wanky MS legs…
Still, when visiting last Sunday (I ‘position’ myself on tarmac if possible, as this is not as bad as ‘wet clay’), meeting up with one of my son’s team mates, made it double worth it (as they also won the match..).
This boy also used to be one of my son’s class mates at primary school, the reason that I knew the family.
(chat chat chat…)
His father had passed away recently (cancer), and I had met up with his dad not long before his death.
Although I did not feel ‘close enough’ (and equipped!) to get involved, if you know what I mean, I did ‘post’ a card through their letter box with some sincere words…
When I met up with the boy after the match, on-the-tarmac-bit, he showed me a grateful smile, after which I put my arm around him… We did not need (many) words.
Those are the moments that you could not care less about ignorant people ‘surrounding’ you (in the ‘widest’ meaning of the word…)
What I actually wanted to say Deb………… :)……. Is it possible to start a topic ‘Global Developmental Delay’ as this is the official name of my daughter’s condition……….
It is bad enough the situation she/ my family are in, but not to be acknowledged does not help! For us it might be of enormous enormous help to find people in a similar position as ours. Please? 🙂
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 magically turn up so their boxes and paperwork adheres to an inspection.
3. Lastly we are tired of professionals who lie to cover their inadequate ability to do a job they are clearly not suited for due to the psychotic personalities
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, and should, make to develop quality teaching/ learning ” for all” is a very difficult path because so many teachers do not have the time, knowledge or skills to be able to differentiate the learning and class environment effectively enough. Genuine inclusion will not be possible until more teachers, in mainstream schools, have specialized training and then become key staff and leaders in those fields, eg ASD, ADHD, Dyslexia and SLD. It is only by the wholesale reorganizing of school staff that children will be assessed quickly, accurately and have their needs met.
We have a culture where parents are held up as the experts about their children and who, once given a ‘diagnosis’, will know what to do to meet their children’s needs because it means services can involved as little as possible. This hands off approach though is value laden because it assumes parents have the time, money and expertise to understand and ‘ cater’ for their children objectively. As a parent i know that this isolation is counterproductive for many families and can lead to feelings of vulnerability and emotional distress. The best outcomes for families are when there is consistent timely and regular face to face genuine communication with skilled professionals and a full involvement in ‘assessing, planning, doing and reviewing ‘. Once a year reviews are not enough for most parents but there seems to be an ‘us and them’ mentality in schools and LAs rather than a sharing and accomplishing together attitude. The new SEND reforms will only meet the needs of children if there is a candid and open dialogue between all those involved in our young peoples’ lives.
So far the EHCP process, in my region, appears to be such a hit an miss affair that it’s much talked up aims seem to be a far off dream.
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.
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
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 work
– that if I put an e-mail request out for parents’ views on a given subject, I get a high, fast, response rate.
– the above tells me that parents, however tired, are still keen to try and get their views across. That’s good news.
– that some things, in some places, are changing (just slowly)
– that our children are worth it
– that my boys are worth it
– that the sun might shine tomorrow
– that the daffodils are beginning to flower and the certainty that they will do so every year at this sort of time
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.