Where There's A Will...The Blog. Part 2

So, we sat down with our solicitor and she made a note of our main assets, namely the house. The next decision concerned the executors of our will. Firstly, she noted who it would be if only one of us hung up our clogs (each other) and then she noted who it would be in the event of both of our deaths.

We decided on a duo to be executors - Gavin's sister and my brother, so that each would be able to dish out what was due to both sides of the family without too much fuss and dealing with people that they didn't know very well.

So that was the easy bit. All she needed was their full names and addresses.

The next decision was on guardians. Having thought about it a bit, we had become aware that there was no perfect answer to this one, other than not dying in the first place. I think if you're going to do a will, this is something that you probably have to accept.

We decided on a member of the family whose own children were getting older, whose kids love the twins and who is also very good with them, Gav's sister.

The important thing to note here is that should she and hubby become an unsuitable choice for any reason, the courts can still rule against them looking after them, if they feel it is in the children's best interest. So you needn't worry about what happens in the future, as long as it seems a sound judgement now. And you can always change the contents of a will, anyway.

What is comforting is that we are also going to be writing a letter of wishes. This will make life easier for both the executors and the guardians. We will note what we have in mind for the boys as they grow up, the hobbies and talents that we'd like them to pursue, and what sort of living we envisage for them. For example, we'd prefer Alec to be in shared accommodation with a support worker rather than in a residential home or in the family home. Personal choices like this can be noted on the letter of wishes and would no doubt prove invaluable to a guardian.

I'm sure you're the same as us, in that there are a number of people involved with looking after your child who understand them very well on a daily basis. They may be unsuitable as guardians, but that doesn't mean that they need to be left out of a will entirely. You can note in the letter of wishes the people you'd like to have influence over your child's upbringing.

For instance, Bobby's teaching assistant M'lanie knows him almost as well as I do, and Tori of course is very familiar with him as well as being an autism expert. I would not expect my sis-in-law to cope without their help. In reality, they'd dive in to support her anyway, but it's nice to note in the letter of wishes that they are trusted and 'sing from the same songsheet'.

We set up a trust as part of our will, deciding that in the event of our deaths, Bobby would obtain his inheritance at the age of 18, providing he's ok with money, and that Alec's share would be looked after by a trustee.

We actually chose two trustees, the same people as the executors, for ease. The letter of wishes that goes alongside the will is to make it clear how we feel the money should be spent, to minimise disagreements.

This was noted in draft form by the solicitor. After we returned home, we contacted the people who we'd pencilled in and asked them if it was ok. Thankfully they all said yes. Bear in mind that the trustees and executors will probably never be called upon. If we live till a ripe old age, it will be the next generation who become the executors and if we survive until Alec and Bobby are 18, the trust will not be necessary. So they know that there is a slim chance of any of this happening.

We confirmed all this to GORVINS, who set about constructing the will and trust based on our decisions. We are now at the stage of reviewing the paperwork and the onus is on us to complete it with our wishes for any personal belongings in particular - for instance jewellery that we have earmarked for a relative or friend - and of course to write that letter of wishes.

I've started the letter of wishes and it's a good feeling to set down in paper the thoughts that are in my head about my sons' futures. All the same, it's a bit depressing to imagine myself playing harps, and I'd recommend you go about it only when you're in the best of moods, preferably with your partner present!

P.S. FREE WILLS AND TRUSTS SEMINARS!

MENCAP holds seminars especially for parents of kids with disabilities.

A specialist local legal professional will talk at the events about how best to leave money behind to someone with a learning disability. The events are free and are a great opportunity for families and carers to get straightforward, face-to-face advice.

Tuesday 25th June, 6.30pm – 8.30pm
Harefield Manor Hotel, 33 Main Road, Romford, Essex, RM1 3DL

Wednesday 26th June, 12.30pm – 2.30pm
The Vestry Hall, The Vestry House, 21 Paradise Road, Richmond, TW9 1SA

Tuesday 2nd July, 12.30pm – 2.30pm
Mencap National Centre, 123 Golden Lane, London, EC1Y 0RT

To book your place at any of the events please use our online booking form: https://www.mencap.org.uk/webform/book-pffe

Mencap has planned other wills and trusts events across the country - take a look at the website www.mencap.org.uk/pffe to find one near you.

Please feel free to contact the Wills and Trusts team with any questions you might have, or to book a place on 020 7696 6925 or willsandtrusts@mencap.org.uk 

Fimbles, Wombles and Other Creatures of Habit...

You probably thought that 50,000 episodes of Thomas the Tank Engine was about as bad as it got. If you’ve trodden the path where I’ve been, you may well be at that ‘numb’ stage with the Numberjacks. This is when your brain makes a brave attempt at survival by actually blocking out the background noise entirely, so that you can’t even hear it any more. 

It became rather obvious to me that this was how I’d maintained sanity for nine years when Alec was waiting to see the paediatrician for his annual check-up. 

Beforehand in the waiting room, he had taken quite a liking to a Disney mirror that told him he was a beautiful princess. He pressed it more than a dozen times and put it up to his ear. By the second dozen, this was floating nicely over my head until I suddenly realised that it could be driving the other parents to distraction. I removed it from him and replaced it with something else (Alec is remarkably easy going in this respect) and there was a palpable collective sigh of relief.

Alec is back into The Fimbles at the moment. We’ve got beyond the ironic joke stage with this and I’m harbouring ever more murderous thoughts about Fimbo as time goes on. I'm even starting to hope that he chokes on a Crumble Cracker, which is uncharacteristically voilent. I can see that the technicolour magic of The Fimbles is what appeals to Alec, but the phrase 'everything in moderation' doesn't seem to apply to autistic kids. Their ethos is more 'everything to the Nth degree and then some'.

Meanwhile, Bobby’s tastes are changing in line with his peers. The stuff that entertains him is even more  annoying than The Fimbles. He feels a frightening connection with The Annoying Orange, a Cartoon Network programme. We don’t have the Cartoon Network, but Bobby has hunted down the most irritating programme on it anyway. He follows its website instead.

The Annoying Orange has a sick fixation with other fruit meeting their untimely end in a blender. It’s murder, but it’s fruit. Should I be okay with this? I'm not sure. I've never wished death on a strawberry. 

Calling the Annoying Orange ‘annoying’ doesn’t even come close. Bobby loves to repeat all the Annoying Orange’s ‘jokes’ plus its maddening cackle. Although this is a form of echolalia, repeated purely for his own pleasure, we are still expected to provide the correct social response by finding it hilarious. If I don’t, he taps me on the arm and does it again. I have tried to explain that the Annoying Orange really isn't my 'cup of tea', but of course all the food metaphors start to get a bit confusing.

Between The Fimbles and The Annoying Orange life can be a little stressful. Even Thomas the Tank Engine, with his frankly predictable storylines (that's the point) concerning pride coming before a fall, has lost his gleam.

Thank goodness then, for The Wombles, Morph, Paddington and The Clangers, where I can harp back to my youth and the days when kids' programmes were made with adults in mind. It doesn't matter how old I get, I'll never tire of the Soup Dragon.

Where There's A Will - The Blog Bit!

As promised in our feature on Wills and Trusts in Issue 19, my blog will now cover what happened when I went through the process of getting a will for myself and Gavin. So here goes...

It's April 12 and Gavin, virtually gripping the car dashboard with fear, notes that my driving is particularly erractic today (that's not the way he said it, mind you). Having failed to find a car parking space at Gorvin's solicitors in Stockport, I seem to have ended up in a bus lane near the town car parks. Impatient to get to our appointment promptly, I'm admittedly driving like an arse.

This tension continues as we to and fro outside the car about how long we'll be here for and what to give the Pay & Display to keep it happy. Then Gav returns to the car for something, by which time I'm hopping mad and shouting 'We'll be late, we'll be late!' like a demented white rabbit.

At least, he muses, we didn't manage to kill ourselves on the way here, despite my driving. Killing yourself on the way to sorting out your will has got to be the ultimate in irony.

The reason I'm tense, although it doesn't occur to me as I decide to skip the lift and huff my way to the sixth floor instead (it's good for us - will keep us alive longer!) is that I'm not exactly looking forward to this. The decisions we'll have to make will be difficult ones. If we both died at once, there wouldn't be the perfect answer for Bobby and Alec. The fact that I can no longer brush this under the carpet is probably playing on my mind. But decisions made by us will be better than no decisions at all.

Also, Gav and I aren't the best when faced with a professional behind a desk.  When the registrar married us, that was fine. But when buying my second hand car last year, the 'good cop/bad cop' act turned into the good cop having a go at the bad cop because she wanted the car with or without new wheels. The salesman laughed all the way to the bank.

Anyway, now we're here and the sensible decisions are about to be made. Christine Thornley, a partner at Gorvin's, has just bought a pen and paper with her. That immediately feels less daunting than sitting on the other side of a computer.

I stir my coffee as we get started. My creative brain is parked in neutral and the weak mental muscles of financial decision making are starting to warm up.

The first thing we need to tell her is roughly how much our house is worth. There's not a solid science to our judgement - nor does there need to be - it's just a case of thinking about what we paid in 2005 for it, adding a few grand for appreciation and taking off a few grand for the recession. We have a small three-bed semi and so it's not a fortune.

Next, Christine needs to note whether or not we are 'tenants in common'. If we jointly own the house (we do) then should one of us die, the property immediately falls into the other's hands. 'Tenants in common' is slightly more complicated, with one half of the house protected.

Gavin is a mortgage broker and knows about these things. For my sake, Christine puts on her virtual Mickey Mouse ears and draws a simple diagram.

This brings me to lesson number one for anyone reading this. Choose a solicitor who speaks simply and explains things clearly. The only way to do this is to find a good one by recommendation.

If they blind you with science, you'll be so bogged down by the jargon, the heftiness of an emotional subject and the tough decision making, that you'll simply let them mow all over you for an easy life. If you truly want the decisions to be yours, they have to be able to keep it simple.

If they can't keep it simple, they're probably hiding the fact that they're ripping you off. Allegedly.

PART TWO coming soon...

Tune In To Bobby's Breakfast Show

It takes me a while to tune into Bobby FM in the morning. By the time I’m on his frequency, he is already asking whether I can upload The Way of the Exploding Stick onto his desktop. 

This is part of Bobby’s overall strategy to strike when I’m vulnerable to attack – either half-asleep, helping Alec to get dressed, or cooking something new.

At 7.30am I’m more concerned with getting Alec to hold onto his trousers as he eases his left leg into them. 

At the same time, Al finds about four other more interesting things to do. I am torn between summoning up saintly patience and grabbing kid and trousers and shoving one into the other.

“So you’ll put it on my desktop?” nags Bobby, fully aware, despite the autism, that it’s about now that I’m liable to agree to something stupid. 

Of course, I can’t say: “No, because that website is teaming with other completely inappropriate games and probably a virus or two.” I need to be diplomatic, because I really don’t need a tantrum blasting through the early morning like a runaway freight train.

“I have to have a look at websites first and see if I can find the game somewhere safer.”

You’d hope that would be the end of it. The thing with autistic kids, though, is that arguments are like gobstoppers. If you use the right technique, they can last a lifetime. 

Whilst Bobby continues to babble about the Skylanders that he needs to collect, my brain hovers over the Control + Alt + Delete setting.

But when we’re in the car, it occurs to me that there’s never going to be a better time to help him hone his conversation than when he’s talking about something he REALLY loves. 

So I do my best to crawl into his head and I ask him about magic powers, and special powers, and extra special powers, and extra extra special powers. 

He can chat about this stuff pretty articulately when he wants to. When you're on his specialist subject, you can get a very good two-way conversation. Course, it's on his terms, but you've got to start somewhere.

When I do wake up and tune in, it’s quite rewarding, as it happens. But as with anything - not to be done before I’ve had my morning coffee.

Waiter, Waiter, There's Some Ignorance in My Soup!

I am so used to being confronted by ignorance when it comes to autism that I sometimes forget that individuals with special needs don’t have the monopoly when it comes to attracting jaw-dropping intolerance.

I recently took a couple of days off as ‘mummy’ and visited a spa with my best friend. I can highly recommend this. It means being in 'high powered mum mode' the day before – Gavin only remembered on that particular day that he was due to speak at a conference. This meant arranging a babysitter, a lift to and from school, a Social Story for Bobby and a picture story for Alec, by which time I could barely summon the energy to pack.

When I told Bobby that mummy sometimes needs a holiday, he offered to let me rest at home whilst he ‘did everything’. Alas, Bobby’s heart is much bigger than his stamina when it comes to tidying up, so I passed on that one.

On the first evening at the spa, we had booked into its marvellous restaurant. My friend is vegetarian, and veggies had a separate menu all to themselves. She was delighted. The waiter came up and started to make chit-chat. Feeling sociable and at ease, we joined in. But when he found out she was a vegetarian, I could have sworn she had said Martian, because nothing else would have deserved his response.

First of all he tried to persuade her that the duck was really good. Whaaa? Did he not hear that she was just celebrating her 24th year as a vegetarian? Then he compared being vegetarian to having an eating disorder. He said this with a grin. I’ve never understood those people who feel that winding others up is a form of humour so side-splittingly funny that you’ll be forced to fall into the aisles even whilst feeling massively affronted.

Finally, he recalled the hilarious time that he hid some meat in the soup he'd cooked for  a vegetarian friend. My friend by this time was staring bleakly at her place setting, wondering what he had in store for her. Although the subsequent meal was meat free and gorgeous, I was later forced to complain, especially after the spa added one of those ‘optional gratuities’ for him onto my bill. Fortunately when I told them, they didn't see the funny side either.

It was really refreshing, in a warped kind of way, not to be complaining about ignorance concerning autism for a change. I’d just written a two page letter to the head of a secondary school in our area whose Special Educational Needs Co-ordinator had greeted the prospect of Bobby joining them in 2015 with about as much enthusiasm as if I’d announced the outbreak for World War Three. Needless to say, he won’t be going there.

We mustn’t assume the world is against us, though. The waiter who only took one foot out of his mouth to swap feet was just one example of many people who don’t take the time out of their own limited experiences to find out more about other people’s. When horizons are narrow, views are short-sighted.

I'm inclined to inform as much as possible, and then turn towards those whose horizons are wider. There are as many of them, but maybe we don’t always give them the credit they deserve. That's because pillocks like that waiter are so astounding that they threaten to sap all the positive flavour that this world has to offer.

Who Needs Fairy Dust When Your Kid Is Magical?

I am reading Ruby the Red Fairy’s adventure. At the point where the fairy says she’s been looking for a little girl to help her, Bobby touches my arm. “Boy – a boy to help her.” 

“Sorry,” I clear my throat, smuggling a smile. “Boy to help her.” 

I glance up at Bobby’s bookshelf, where about two dozen similar tales are squashed alongside Horrid Henry, who is no doubt pulling faces and trying to push the twinkling little stories off the shelf, which happens quite spookily at night. 

Bobby is about as blokey as they come. His Skylanders Giants, the most macho looking bunch of cartoon heroes you’re likely to meet, scowl out of the poster on the wall above his bed. A ‘Raving Rabbid’ dances alongside them (never quite worked out the appeal, there). Sonic and Mario take centre stage, arms folded, on the wall opposite. 

And then there are the fairies. 

“I’m not reading you a fairy book,” groans Gavin, reaching onto the shelf for the easiest, quickest story he can get away with before Top Gear starts. 

“Not another Mr Men story!” protests Bobby, but soon perks up because dad is good at adding all sorts of silly hidden extras. It’s my job, evidently, to animate stuff concerning gauzy wings, toadstools and all sorts of other sickly sweetness in a series that’s distinctly lacking in ironic humour.

I’m not bothered. To hell with macho. This is where it all begins for our little autistic guy – the world of imagination! A little later than his peers, he has discovered an entire universe of characters that live at the bottom gardens, inside trees and in fictional places. He is inspired, he is moved – and yet it’s a common myth that autistic children ‘don’t have imagination’.

What’s actually meant by that, is that autistic people can struggle to see things in abstract ways, or from another’s viewpoint. That’s not the same as lacking imagination. Evidence for that statement is Satoshi Tajiri, who invented Pokemon, Alan Turing, who created one of the first designs for a stored-programme computer and countless other current and historical inventors, scientists and creatives. 

However, autistic people do tend to be literal thinkers. They like the solid, the visible, and the tangible and tend to shy away from abstracts that are more uncertain in their nature. Perhaps that’s why the myth pervades that they lack imagination.

When Bobby was two, he enjoyed spinning objects. He pushed cars backwards and forwards. He flapped a lot (he still does, at nine, but only when especially excited). He didn’t understand imaginary play whatsoever. 

In toddler group, whilst others were gathering around the toy cooker making plastic fry-ups, they’d glance bemused as Bobby sat on the floor repeatedly opening and closing the oven door, flapping his arms and bouncing on his bum.  Pretty embarrassing at the time, but he needed no more stimulation than that. It was only when he started showing that he could read and count before he could talk that we realised how bright he was. Even so, at his first autism ‘test’, which he passed with flying colours, the paediatrician got hold of a block of wood and pretended it was a plane – ‘Neeaaaauggggh’, he said, convincingly. 

All Bobby could see was a very stupid adult holding a block of wood over his head. When the block of wood was given back to him, he ignored it, perfectly sensibly.

I can’t remember how long this went on for but I do remember almost fainting with surprise when he first attempted to ‘feed’ a doll (with a bit of encouragement). He wasn’t exactly showing early promise for social work, as he soon threw her to one side, preferring to assess whether a cube would spin on its corner.

At school, Bobby would take little walks round the playground with his lunchtime helper. He wasn’t a loner, and didn’t mind physical play, but stories conjured up from nowhere were a sticking point.  

In the meantime, he was happy to immerse himself in the imaginary world of Mario and Luigi. 

With solid ideas to build on and real figures to play with, he began to extend his beloved screen time with some real life play, using building blocks to create his own ‘Mario’ levels and jumping the characters over them. At school, his teaching assistant allowed him to write Mario stories, whatever the subject matter in literacy. Character descriptions were very factual. Luigi was green; Mario was red and blue – end of.

Autistic kids can be phenomenal when it comes to computers, and Bobby is no exception – this is his strength. Some adults have a fear that computers can make an autistic child even more isolated. But rather than hold him back, his PC games formed a stepping stone into the world of imagination.

Last year, Bobby’s class did knights and castles as their theme. Before long, the oak tree at Bobby’s school became their adopted ‘Dragonland’ and at the age of 8, something clicked. Bobby started visiting ‘Dragonland’ every break time with different friends and having proper ‘adventures’ there. 

This year, the school cloakroom has become his ‘time machine’ (just like in his Horrid Henry story) and a vehicle for history lessons on the days when he isn’t being so co-operative. Now that we have fairies into the bargain, I can’t actually believe that I’m looking at the same boy who stared blankly at a wooden block that day. 

He’s still literal, of course. That’s part of him and part of the autism (same thing). He still worries that a fairy will ask him for help and he won’t know what to do about it. He also has a little prayer that he repeats to himself; hand on heart, like the American national anthem each day: ‘I still believe in fairies, myself, magic and everything else.’ 

And I still believe that autism isn’t a condition which is solid and inflexible, it’s something that keeps moving and changing and adapting with its environment, just like a developing child. So when you read that autistic kids have ‘difficulties with speech, social skills and imagination’, that doesn’t mean non-existent. 

Bobby learnt to talk at four, he gathered social skills that he wasn’t born with like bluebells in a forest of mainstream children and now his imagination is developing, too. 

As parents, we have to keep encouraging and keep believing. Then one day, you might even see something as magical as a fairy landing on your windowsill.

A Store Which Puts Themselves in Your Shoes

A friend of mine's daughter works at John Lewis. She had recently mentioned that if you have a child with autism, you can call the store before you hazard a trip to the shoe department and they will have someone waiting.

Since the John Lewis kids' shoe department is usually about as packed as One Direction's mailbag, this was welcome news, especially when Alec's latest trip to the podiatrist revealled that he'd no longer need his special 'Piedro' boots. Joyfully, I realised that he would now be like everyone else, at least when it comes to footwear.

Not so joyfully I recalled the delhi counter ticket that I'd collected on Bobby's last trip to the shoe department, plus his insistence on shouting out every number as it came up in the fashion of some demented bingo caller.

Alec has been in Piedro boots ever since his brain injury in 2005, which happened to him at the age of 2. His 'special' shoes are mercifully rather trendy-looking ankle boots and they're also weighted to help his balance. They've helped him brilliantly - but all he needs now is some in-soles, which I've brought with, and some regular shoes.

This is cause for celebration, I try to explain, as his face starts to pucker whilst we head up the escalator and past the cosmetic ladies in white coats. Pretty soon his mouth is doing that upside down shape that's so unfamiliar to me, and his eyes are filling with tears. Oh no. We have 40 minutes before I need to collect Alec's twin from 'Stop 'n' Play' and this doesn't bode well.

I'd thought that Alec wouldn't need an appointment system. Laid back, passive, Alec. You could drop a bomb on the living room and he'd just raise an eyebrow. He is mostly hypo-sensitive, which means he usually needs sensory stimulation to wake up his nervous system. So not much bothers him. I'd felt like a bit of a fraud asking for the 'autistic treatment'.

Not now I didn't. As his crying turned to screaming and some surprised little faces stared up from their shoes, I realised that Alec had decided that today was to be AUTISTIC DAY. I'd bloody well messed with his master plan of following up a long hard day at school with chocolate biscuits and The Wiggles DVD. I was going to pay for this.

Although most of the staff were busy, fortunately they didn't really need alerting to our presence, as Alec was pretty much an air raid siren by now.

"Are you Debby?" said a voice.

The mum with the autistic kid who's screaming his head off? Take a wild guess...

"I'm Jane, come with me," said a capable, calm looking woman in a soothing voice. She had it covered, I could tell within 10 seconds. Jane led us away from the hectic shoe department and into a large and emtpy children's changing room. She brought Alec some stickers and some posters, which distracted him a bit. She showed him her feet measuring machine. When he didn't like it she took her time with him. By this stage I could have hugged her.

After about ten minutes, Alec finally realised that I hadn't taken him to John Lewis for the specific purpose of having his feet removed.

He started to calm down. He even gave little signs for 'yes' to indicate he liked the shoes. Or more probably, 'yes - whatever - now let's get out of here.'

Jane explained that she had some experience in working with autistic children. It showed. Every time she went away to get some more shoes, she announced her return before she stepped through the curtain. By this stage she had elevated to diety status in my eyes.

She knew what she was talking about with the in-soles too, which was good because I had no idea what to look for. In half an hour, we found some shoes that fitted perfectly. Alec, by now chewing the sticker collection, gave her a little 'thank-you' sign. And we were off, all smiles now, with me mentally reserving a large gin and tonic for myself.

We didn't leave before I'd told the manager what a good experience it had been, and apparently you can phone up John Lewis anywhere in the UK and ask not to wait in the shoe department - if you have a child with autism, that is.

This is the pinnacle of autism-friendly environments as far as I'm concerned. Usually I'd buy cheaper but they got my money because they thoroughly deserved it. I wasn't just paying for the shoes, I was paying for the expertise in handling my child and his needs.

Well done John Lewis. In an age where everything seems so impersonal and slapdash, you have won the heart and mind of one very grateful shopper.