Here we take a look at Jon’s story, an NFA foster carer from the North West of England, who fosters despite suffering from Muscular Dystrophy.
Caring with a life limiting condition
Yes you read that right....caring with, not caring for…
It’s a big distinction between the two. It’s a hard thing to care for people with life limiting conditions. It’s hard work, scary, heartbreaking and can often be thankless. It has a deep and profound impact on those who do it. I know I’ve lived it. I have had that first hand view point watching my grandfather slowly fade away to illness. I’m also aware of the pain of knowing it’s actually going to happen to me, just like it did to him.
I have Muscular Dystrophy, and it will, at some point, end my life. Now to be fair I have a much milder form than the most commonly known strain of Duchenne. I have Becker. Without going into the complexities of why my DNA is wonky and how I dropped a chromosome along the way, suffice to say I probably won’t make much past 70 even on a good run.
However, despite being disabled, I can honestly say that being a Foster Carer is the most uplifting and life changing thing I have ever done.
My story goes like this…
At the vulnerable and tender age of 17, I got this medical bombshell dropped on me, and as you can imagine I thought my whole world was collapsing on my head. It’s a hard thing to get straight in your mind at that age, though I suppose no age is a good age. But being young and full of ambition it was a big blow to me. It led to a hard few years. Years that changed me and scarred me. I was miserable, angry and frustrated. I drove people away for no good reason. I felt very sorry for myself. Even though at that time I had very little in the way of symptoms, I felt like I was already dying. It made me very bitter.
At the time I was just embarking on a career path in heavy engineering, ship building, oil rigs all that sort of thing. A 7 year career path, all told with college and university. I think on reflection it was something that kept me going at the time, a distraction. A challenge to overcome, a battle to fight, and one I could actually win. I worked so hard to distract myself in it, I actually managed to excel. I even managed a fairly successful career in my field for a while and worked my way up into a very senior position.
Then I lost my job. Though I must add through no fault of my own. People talk about downturns in workload and overstaffing etc. I even wondered if my disability had anything to do with it. Either way you end up out on your ear.
It was at this point that I found myself with the beginnings of noticeable Muscular Dystrophy symptoms. The illness exacerbated what was already a very difficult and frustrating period whereby I had little luck finding suitable employment. The reasons for this are complex, but as a result, I wasn’t offered a job in three years. Lots of reasons as to why were given, however not many made sense or seemed fair, but I had to accept it. I had no choice. Being resourceful I eventually considered self-employment, becoming a fairly successful property developer. The project got nicely off the ground, and then the whole world went into a financial meltdown. The property market fell off a cliff.
It was at this point that my wife and I started to talk about fostering.
The conversation started with an argument funnily enough. I was complaining about being bored, sitting around at home, doing nothing with my time, complaining that I was an educated man who was watching his life dawdle by. My wife argued that I should do something about it then. Stop moaning and find something meaningful to do. Do something with kids; I loved children. So maybe I could go work with them or something.
We came to NFA through its website, and right from the initial home visit, felt the fit was right for us, they were honest with us, professional, but most of all didn’t prejudge me on my condition. I went through exactly the same process as every other carer. There was no bias or judgment; I became a carer on my abilities, not my disabilities.
And so here we are, Foster Carers for the National Fostering Agency and almost four years along the road from our first placement – which I hasten to add was 10 weeks with an alleged teenage offender (in at the deep end to say the least!). I fostered mainly on my own for the first year and a bit, then my wife was made redundant and she decided that she would love to foster as well. So now we are both full time Foster Carers for two little brothers who have been with us for three years.
That last paragraph makes fostering sound so straightforward.
Fostering is the single most rewarding thing we have ever done, without a doubt. It is also the most difficult.
It’s the most rewarding for the small triumphs that we get. The things you never expect, the child that tells you that you saved them, the child that tells you that they love you and means it, the child that smiles and laughs for what might be the first time ever. The little moments that no one else has experienced with that child. The changes you see over time, providing a safe and happy home, the protection, the being an advocate and challenging the wrongs these children have faced.
All of those elements and so much more make being a self-employed foster carer the best thing in the world.
The point I make is I regard my role as one of the most difficult things I have ever done. This ain’t no 9-5 I can tell you! We operate within a fragmented and imperfect system, and people are the most complicated and difficult of task masters. For me part of the problem is that we are trying to please everyone, all of the time.
The children, the social workers, the birth parents, the courts, your own children, the siblings of the children you look after, even their carers to an extent. It’s a hard task to navigate keeping all of these people as happy under the circumstances. Challenging poor decisions is fundamental to my role as a Foster Carer, and maybe it’s a maverick approach, but I’m not here to agree just for the sake of appearances. If it’s wrong, or damaging, or just down right unfair, then I’m going to shout from the rooftops about it.
I have tried to think about how my disability affects my role, and if it affects the children I look after. It probably does in some way, but I can’t find it. I get them up, get them dressed, take them to school and nursery, pick them up, do the homework, take them all over the place, play with them and make their meals. I do the bath, do the bedtime, do the meetings, the doctors and the contact, I battle and fight for what is best for them, and most importantly, care for them like they are my own - all the same things that my able bodied wife does.
What did I miss out? Being disabled doesn’t change any of it. I maybe more tired sometimes, and maybe I can’t run round the park and play football with them, but I try, and when I fail at playing football I compensate for it in other ways.
My whole adult life has been about overcoming, striving, getting on with it. That’s what disabled people do, most of them anyway. We just get on with it. If it’s any harder for us then we don’t notice. We just do what everyone else does for the most part, all the basic stuff, but we have an added set of skills, finely tuned over many years of just having to get it done regardless of the difficulty. Like a double amputee running a marathon, is it harder, or is it just different? Able bodied people would say harder, the amputee would say different.
Having a disability made me a very different person to who I would have been without it. I’m more thoughtful, and more introspective, and more proactive than I was before. I’m better at problem solving, and I have more compassion. I think that having my own life struggles and obstacles, and the attitudinal, emotional, and physical stigmatization of other people has made me resilient and stronger mentally. I personally think that this inherent resilience makes me well placed to not only genuinely understand children and young people who have had difficult backgrounds, but also makes me able to offer another perspective on their worries and problems and struggles in some cases.
At the end of the day fostering is about people, nothing more. I have learnt so much from fostering, it has made me a better person, and I hope that maybe, just maybe, a little bit of that can be passed on.
I recently said to someone that fostering is the hardest, most frustrating, annoying, difficult, wonderful, rewarding, amazing job in the world.
I can’t think of anything I’d rather do though.
I have never felt the children are missing out on anything due to my illness. It’s my illness not theirs. If I can do it and love it, and honestly put my hand on my heart and say being disabled and a Foster Carer is the most uplifting and life changing thing I have ever done, then that’s got to count for something. One of the main things I want to pass on to the children is that we are all different, but all the same. I want to make them understand and be tolerant and be compassionate to others. That would satisfy me. Disabled or not, I ask you to find fault with it.
Jon is a Foster Carer with National Fostering Agency, the UK’s largest independent fostering agency. If you are interested in finding out more about fostering in the North West then call us on 0845 200 4040 or contact us.