There’s nothing like the death of a work colleague to get you thinking about your own mortality. Especially when they are the same age as you.
Back in September, the staff at my school returned with the sad knowledge that one of our colleagues had died during the summer holidays. In fact, he had died on the second day of the holidays, which somehow made his sudden, unexpected passing seem all the more cruel. His last will and testament asked that donations be made to his favourite charity. This got me thinking about (and acting upon) my own lack of a will.
It’s about time I got round to it. We’ve owned a house for 14 years, been married for eight years and been parents for the same length of time. Nobody likes to think about their own demise, but it’s sensible to make sure your loved ones are properly provided for and your affairs taken care of. Besides, how hard can it be to make a will?
Quite hard, as it turns out.
My first step was to visit a solicitor. I tried to avoid the ones with snazzy names like ‘Wills 4 U’ or ‘Will Power!’ and went to a well established local solicitor for a consultation. This was only partially successful, mostly because, early on in the conversation, he told me the cost of drawing up a standard will. I was so shocked by the cost that I never really got past that moment. He continued talking for some time but I never really took in what he said. I was too busy thinking of ways not to die, so I could avoid having to shell out the exorbitant prices he was charging.
When I did eventually re-focus, he explained that there would be further costs if there were any special considerations or circumstances involved. And this is where it started to get difficult. I answered that yes, there were special circumstances. In addition to the usual considerations about choosing an executor and identifying who is entitled to what share of our estate (a grand word for our three bedroom semi), we had to think carefully about our autistic son’s future.
I hate thinking about the future. I find the here and now difficult enough to cope with, let alone the uncertain, unpredictable future. But thinking about our will has meant doing a certain amount of predicting. The overriding ‘special consideration’ (I can see the solicitor rubbing his hands with glee now) is whether or not B, as an adult, will be able to lead a normal, independent life. Whether he will be able to function without help and be able to manage his own money. Hand in hand with this go thoughts about his ability to hold down a job, own a house, be in a relationship. Excuse me while my head explodes.
A helping hand came from Mencap (via Special Needs Jungle), who sent me some excellent resources via their website. In particular, their guide to ‘Wills and trusts: leaving money to someone with a learning disability’ was very useful. I learnt that there are several types of trusts, depending on the level of the child or adult’s needs. Put simply, a trust fund would be managed by a trustee whose role would be to manage the funds on behalf of the beneficiary. Alongside the setting up of a trust fund goes the appointment of a guardian in the event of both our deaths.
This led to a very awkward conversation between my wife and I. In the event of our deaths, who would care for our children? Neither of us wanted to make the decision about which side of the family would be responsible for our two boys. I read an excellent article in The Guardian this week which, amongst other things, identified that 18% of autistic people over 45 live with their parental families. Is this B’s future? I’m 90% certain that he will be able to live independently, but who knows? And if you’d asked me six months ago, I would have been far less sure of the answer.
Once upon a time, we were asked to be the named guardians on our friends will. We accepted, but that was in our pre-autism old lives. Like a number of friends and acquaintances, this friendship has sadly dwindled. We are to blame for this. As life with an autistic son became increasingly difficult, we put down the shutters to the outside world. To many, it will seem as if we went into hiding. The truth is, we simply couldn’t face these remnants of a life we had forever left behind. They had not changed, but we had, or at least our world had. I think that, as time passes, we are getting closer to emerging, blinking, from this self-imposed bunker. Perhaps those old friendships will be rekindled. I doubt our old friends will be asking us to commit to guardianship though!
The answer to our guardianship conundrum was really quite obvious. In the absence of friends, and taking into account the fact that our parents are of pensionable/retirement age, that left the only family sibling: my wife’s sister. This is something I feel uneasy about.
Without getting too deeply into it, my sister in law’s life has had its share of troubles in recent years, although she is now happy and settled. With two children, she has more than enough on her plate. I simply cannot imagine her being equipped to look after another two. More specifically, I cannot imagine her looking after B. “It’s hardly ideal” I suggested to my wife.
This is what she said: “You’re talking about us both being dead. Both children have been orphaned. My sister has lost her only sibling. My parent’s, their eldest and your parents, their only child. And you’re talking about ‘ideal’?” She has a point.
When we eventually got round to asking my wife’s sister, she of course said yes. The deal, however, was agreed with a condition. We had to promise to look after her dog this half term while she went on holiday. And you wonder why I have my reservations.
The outcome of all this is that we have decided to get our will drawn up but, for now, we will not be setting up a trust fund. At the age of five, my son is making tremendous progress and, in all likelihood, will be able to lead a normal life, whatever that means. We will review this every few years which might cost more further down the line, but feels like the right thing to do for now.
The other plan is to not die. I’m trying not to take the fact that I’ve aged ten years in the last two as a bad omen. Hopefully my boys will go easy on me!
And as much as the future unsettles me, thinking about all this has given me a reason to look forward. I’m looking forward to seeing my boys grow and I’m looking forward to the time I will be able to spend with them. My sister-in-law can breathe a sigh of relief in the safe knowledge that I have no plans on going anywhere soon!
Reality bites us ,really hard sometimes . Its something i try not to think about too much but i know i will have to address soon , just not right now . I see a bright future for Small Boy at the minute but when it next clouds over maybe then i will do something about it.
Again – this resonates. We put off writing wills in the past, mainly, i’m sure because we couldn’t decided on who would be the guardians. In our family there is a sibling on both sides, each married with one child. On one side is a teacher who showed precious little interest in autism and offered no support at all as we went through the whole diagnosis process. On the other side is my incredibly busy brother and wife. They are lovely but in London. Neither sibling sees our children much. Neither know much about autism. They each have their own child. I can’t bear the thought of anyone who researches less than me being in a position of having to love and be an ambassador for my L. It is so difficult to predict anything about our children isn’t it but whilst the decision on guardianship is no easier, I feel better informed as ever from reading your post. A trip to the solicitor on the cards methinks …
We have been dilly-dallying over this process for the last three years and are still no nearer to reaching a conclusion. As far as H’s future is concerned, I’m like an ostrich – he will certainly need long term care, probably 24 hour, and the possibilities range from terrifying and Winterbourne View-like to merely depressing. We don’t want to place undue responsibility on his older brother (who a year ago was insisting, independently of any prompting from us, that H would live with him, but a year further into the march of puberty has just told us that he probably wouldn’t see H much when they were grown up ” because I’ll have my own wife and family ” ). There was a good article in yesterday’s Guardian where the writer talked about about setting up a committee of people who would decide what happened to the children in the event of both parents dying – his reason for this is that you can’t predict a child’s future needs. – and I think it’s probably the best solution for us. Other than living to 150, which is what I firmly intend to do.
My wife is very conscious of the burden of care that could fall on B’s older brother. It’s the only thing that has ever made us consider having another child.
Gave me the giggles as usual, thanks
but you’re right, it is a serious matter. It’s funny how you definitely can imagine an ‘NT’ child growing up to live capably on their own, but you can never be quite so sure with an ASD child. We’ve also gone round the roundabouts about doing a will and never got off anywhere….. too expensive, you’re right. And to be honest, if I’m gone, I won’t relaly be able to care anyway, will I??!! 