The Perfect Job

When antenatal testing identified that there was a high chance that Freddie would be born with Down’s Syndrome, I was strongly urged to terminate my pregnancy as soon as possible. In the opinion of the consultant I was under, the baby would be too disabled: neither he, nor we as his parents, nor his brother and sister, would have any quality of life, our marriage would break down, our other children would suffer, yada yada…

Fast forward sixteen years and Freddie has just applied for Personal Independence Payment or PIP. Or rather, I have applied for it on his behalf as his appointee, because he cannot manage the forms, or money, or to navigate the benefits system, by himself. A few weeks after the application was submitted, I got a phone call out of the blue – an assessor wanting to ‘just clarify’ a few things. Nothing about the things they proceeded to ask me seemed intended to bring clarification, but rather to catch out the unwary, by repeating the same questions that had already been answered in detail on the forms, but without the luxury of time to think about the answers. We are now waiting to hear if he will be judged not disabled enough to be awarded PIP.

That is the space he inhabits – too disabled in some people’s estimation and not disabled enough in others.

What if he doesn’t get PIP? How will he make a living? Are there any employers who would be willing to provide the extra training and mentoring he would need? I know that some of the pupils from his school go out into the community to do mainstream-style work experience with local employers. Would Freddie have a chance to do this? And if so, where would his placement be? At Parents’ Evening I asked his teacher.

She told me that the level of safeguarding Freddie, as an individual, needs meant that his work experience would have to take place on school premises.

Here we were again, in that grey no-man’s-land between being potentially not disabled enough to be awarded PIP and too disabled for any employer to take him on.

It brought home to me that, with the best will in the world, and no matter what supports and strategies the government put in place to encourage, and help, disabled people to enter the employment market, there will always be some who, like Freddie, will never be able to access the workplace.

It isn’t just about making a living, though. Freddie has a lively and inquisitive mind, he needs a routine, and purposeful activity to fill his days. Once his education has finished, he will not be happy or healthy just sitting in his room, watching TV. If only there was some kind of employer out there who would be able to provide the level of safeguarding that he needs so that he could have the dignity of a job, a purpose, and a pay packet.

Then, one evening, as we walked home from visiting his Nana, who has Alzheimer’s, it dawned on me that there is one job that he would be perfect for, and it would be perfect for him, too: chief morale officer in an Old Folks’ Home.

He loves going to see his Nan at the care home where she now lives. She’s not very steady on her feet these days, so instead of walking her along to her room or to the coffee area, we sit with her where she is, usually in the communal lounge/dining area.

Freddie has quickly learned the names of almost all the other residents on her floor, and he greets them all when we walk in.

Perhaps because we are regular visitors, and because Freddie is distinctive, they all seem to remember and recognise him. They smile, wave, comment on what a lovely boy he is. He chats with them: random and undemanding conversations, which, to be honest, suits both sides. He doesn’t mind if they ask the same question ten times over, and they don’t mind if he asks them how old they are ten times over.

One or two of the residents can be anxious and fretful. He seems to tune into this, will go over and take them by the hand, even venture a little peck on the cheek if he knows them well enough, and just starts rabbiting away to them. For those few moments, they seem to be transported out of themselves, are distracted from whatever they were fretting about, and smile again. The content of the conversation does not seem to matter at all. It is the interaction and human connection that is the important thing.

He is well practised at helping hand out drinks and snacks, he could easily help the Activity Coordinators to set up for the games, entertainments and exercises they do each day with the residents and would be in his element charming the reluctant into joining in. And best of all, he’d be safe behind a key-coded door until one of us came to meet him at the end of his shift.

If only I could manifest this made-up job into reality for him.