Tuesday, 1 April 2014

The Disability Diaries : Admitting Defeat?

They say that asking for help is the hardest thing to do.  Is it?  I don't think so, in respect of disability I sometimes feel that actually getting the help is sticking point.  It appears, that time after time, you can ask for help but unless you have the staying power of an ultra-marathon runner, the skin thickness of a rhinoceros and the forcefulness of a stealth bomber, you are screwed.
We are a family that has always tried to cope 'in house'.  We have asked for nothing in respect of respite in the 10 years that our son has needed our constant care due to his severity of his physical disabilities courtesy of his condition of Cerebral Palsy.
Our mind-set has always been, he is our son and to care for him is our responsibility.  As a mother it is hard to believe that anyone other than those closet to him could ever care for him with enough respect and empathy and thus it has been almost impossible to let go.  However, we had to let him start school.  And with this came the realisation that there are people out there who can care for him that he enjoys the company of as well.  And by being so over-zealous with the apron strings, maybe we are letting him miss out on other things.  Others company.  Social aspects.  Broadening his own ability to trust.
Understanding this is one thing.  Actually loosening those apron strings, well that is quite another.  But you know you have to do it.  You have to do it with all children eventually, but when your child doesn't quite have the capacity to understand if someone is being mean, or mistreating them and you are not sure if they would be able to tell you it is much harder. 
It also forces you to think about the thing that you never want to think about.  What if you wasn't here.  So more often than not, you retreat, back to how you were keeping all care 'in-house'.  With just those that you trust implicitly.
But what happens when your son becomes your height and body weight.  When he slips down his specialist bed and you can't get him back up, or if you try you risk damaging your back, neck, shoulders?  
Injury.  A carer's biggest fear for themselves.  Not for the fact of the pain or discomfort, but what it will stop you being able to do.  Caring for your child.  You need to be fit and healthy for as long as possible so that at the very least you can still be the ears and eyes for your child.  So sometimes there comes a point where it isn't your choice anymore.  You have to ask for help.
But when you make that call to whichever service you think you need, you are just another voice on the end of the phone, asking for help from a system that can't really afford to help everyone.  You are starting at the beginning of a very long, bureaucratic road that is a bit like a game of snakes and ladders.  Get the right person on the phone and you can leap frog to the next level.  The wrong one and down you go, back to the start.
We once asked for help in respect of developing J1's social skills.  For him to understand that you can go and have fun like bowling, or to a club like scouts with a friend rather than an immediate family member, to try and broaden his horizons.  It was a big step, deciding to ask for that help.  To cope with the idea that someone else would be his carer while he was out in the big wide world - even just for an hour or two.  But, I acknowledged, it would be good for him.  It took nearly two years to get refused.  Because - we were coping as a family.  They made murmurs about standard 'send him away' respite.  But that was not what we were asking for.  We were asking for much less.  But never mind that.
This time I asked if we could look at getting some help overnight.  J1 requires someone to be in the room with him at all times.  Therefore either myself or my husband has to sleep in the room with him.  He is with us full time now, my parents can no longer offer to look after him for nights in the week, and although we do it without thinking, will this have a detrimental effect on our relationship long term?  People repeatedly tell me that you can have an overnight carer come into the home specifically to sit with a child overnight.  They normally say this with an amazed tone that we do not already have this in place.  Like it is our fault.  But I ask them -  CAN YOU?  Really? 
We do not seem to be able to make this clear to anyone I have spoken on the phone.  When, of course, you eventually work out that you are speaking to the right department.  This time, I was directed to a booklet of available help - guess what that booklet offered - help a few hours a week to help with social activities such as bowling or scouts.  
Frustrated much.  I think so.
So, another week has passed.  I have done what they asked me to do.  Look at a booklet that whoever was on the phone should have known would not be able to offer a service that I need for my son.  Another week gone. 
Why am I starting to worry about this now?  I was never a worrier because as far as I was concerned I would always be the one to look after my child.  Ah the innocence of my twenties.  That wonderful age where you do not believe you will ever really feel older.  But as I rapidly approach my mid-30's and I can feel that back twinge or that shoulder blade pull, and I do realise that my parents are now pensioners and J1 is a big lad, the realisation can no longer be avoided.
We need help.  It just grates me to admit it.  


  1. Oh Lynsey, I am so sorry it is so hard!! I can't believe how many hoops they make you jump through when all you are asking for is a little bit of help. I do so hope that you get through to just the right person to sort out what needs to be done to give you that support

    1. Thanks Amanda, it is just the way it is and I understand proper screening and systems must be in place when you are asking for services that cost a lot of money. I am also always grateful for the fact that he gets (well, most of) this on the NHS and we do not have to use an insurance system like many countries. It can be just a long process to get where you need to be.

  2. I'm really sorry to read this too Lynsey - I hate it that people suffer, even the fit and healthy ones like you - because yours can't be seen at face value and your stoicism is just taken for granted. It's bound to take its toll and as your son gets bigger, it's time. Best of British, Stay strong XX

    1. Thanks OSM, much appreciated. We do seem to have made better progress this week, one of the school professionals stepped in and helped speed things up a little.

  3. Big hugs to you... by realising that you do need that extra care - and overnight care seems like a great thing to push for - you are really taking care of your self and the whole family unit. You can't possibly do it all yourself. You have done amazingly well all this time, let yourself be supported more, and I hope you don't have to put up with ridiculous amounts of red tape as you ask for it . X

    1. Thanks OM, it was a big step and the Hubby still is in a bit more denial than I, although he agrees with the hours he works we have to look at the options now for exactly the reason you mentioned, the sake of the overall whole family unit. I do not want to be injured and not only not be able to not care for J1 properly but I do not want to have to say to J2, Mummy can't do this or that.x

  4. As moms, we want to do it all and do it well..by ourselves. When we cant do that, it's tough. Asking for help is OK. I know this is tough, but you can and will get through this. Trust me. I'm mom to an 18yo special needs daughter. Some of the times I asked for help were the best things I ever did. (Visiting from LoveThatMax)

  5. oh bless you ...sending you the biggest of hugs, you are a constant source of inspiration ... and asking for help is human and sensible ... I only hope it's not too much faff getting it ... stay strong lovely one x

  6. I am so sorry that the help you need isn't forthcoming. I know Mencap have been working on a drive for better access to respite, have you tried contacting them. Not sure of the way forward but I do hope you all find a solution.


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