an open letter to the parents of adults with learning disabilities in social care

Subject: an open letter to the parents of adults with learning disabilities in social care
From: a support worker
Date: 18 Jul 2018

To Whom it may concern:

Writing this is the support worker that you have come to know ever so well over the past few years, or so you think. Your son/daughter was born with learning disabilities and you've fought their entire life for equal rights and the best quality of care. Your life has not been easy but has been worth it, they have grown and now face a comfortable, long future. A prospect that would of been almost comical not so many generations ago.

The problem that you face now is entirely different. The world is changing rapidly and opportunities for supported, even independant, living are becoming more and more available. On paper it is perfect - 24/7 support provided with individual living space. Now you can stop worrying about the looming prospect of what happen when you move on. You can even pop round for a coffee and cake, how 'normal' does that sound. But your 'child' is now approaching middle age and years of constant caring will soon grind to a halt. You will hand the responsibility to virtual strangers. You will stay up at night worrying - you will struggle to let go. You'll re-assure yourself daily, hourly that you made the right decision; you'll even feel guilty when you enjoy that extra glass of wine. You hear horror stories on the news, you need to check, to be there, constantly. This is harder than you ever imagined. I understand.

There are hiccups along the way, details missed out, things not done the way you would do them. Then one day you walk in to find your 'child' eating raspberries, they've never liked raspberries, they didnt eat them while they were at home with you, why are they eating raspberries? You see red. Your mind rushes to all kinds of accusations. NEGLECT. This person clearly doesn't know, theyve paid no attention to the specific list of foods you carefully typed out and laminated. The list of foods you typed out , safe in the knowledge that they are favourites of your 'child'. The list of foods you spent you compiled in the early hours of the morning when your anxiety got the better of you. The list of food you typed out... over 4 years ago. The support worker suggests that tastebuds can develop. You despise this, they don't know what theyre talking about, how dare they insist they know your child better than you. NOBODY KNOWS YOUR CHILD BETTER THAN YOU. I understand.

I understand that this 'child' is your life and soul. I understand that at times it is frustrating -especially when things go wrong. I don't blame you or judge you because I realise the emotional toll is far greater than I'll ever know. I am here to work with you as well as your 'child'.

What I don't understand is how, after several years, you scream, shout and even throw things at me, in front of your 'child'. I don't understand how you can smile sweetly and thank me for my hard work and moments later put in a formal complaint because the dishcloths were dull instead of pure white. I don't understand how you can call me useless to my face.

We talk about things, I explain that I am trying my best. You tell me that 'everybody makes mistakes' and that 'it doesn't matter', but you will never forget- it's an anecdotal horror story to discuss with your friends, which you do. I also support your friends 'children', you disuss it at length with them in earshot. The next time I walk in to work everybody is aware and the people I support are talking about travesty of when the dishclothes were dull in the downstairs flat. Your 'child' calls me horrible because of it; I feel 2cm tall.

I go home and consider if this is the job for me, I cry - I bet you didn't know that. I go to work, I spend just moments with your 'children' and remember exactly why I started this job in the first place. We have fun, we laugh a lot together, I was over reacting before, this is the job for me. You arrive on schedule, you immediately start to look for wrong details, you find something, dust behind the sofa. You march to find me, demand an answer as to why it isn't being hoovered and dusted once a week. You tell me that YOU don't pay a ridiculous amount a week for there to be dust. I bite my tounge, no YOU dont, in fact the tax payer does. You continue to shout, I apologise, you tell me that you've never been happy and want rid of this place and storm away. I worry for my job, my family, I ponder everything I've ever done wrong. CQC have inspected, we're rated good and aiming for outstanding. Can you fire me because the bed wasn't made correctly? - in this independent living service where I am paid to encourge your 'child' to do things for themselves. I can't cope.

I understand why you are concerned. I dont understand how you can look down your nose at me as if you are superior. I dont understand how, after several warnings from management, you can continue to degrade me and have no repercussions. I dont understand how you can play mind games with me - chosing to give me the cold shoulder for days if I give you an answer you don't want to hear. I dont understand how you are so scared of your 'child' being abused that you can't see youre mentally abusing everybody else. I dont understand how you think screaming and shouting at me will make me bounce back and want to work even harder.
Lastly; I don't understand how you will never understand that verbal abuse isn't justified because somebody forgot to peg the washing out. It's scary knowing this isn't a one of case.

I want to work with you, I want to work with your 'child', I love my job but I am torn. We share a common goal, I want the world and more for your 'child'. But I can't continue in this manner.


A Support Worker