Poor Robin Williams. A long-term solution for a short-term problem. That’s what they say, isn’t it? ‘They’ being people who’ve probably never had to live with depression.
I’ll come straight out with it. I’ve struggled with depression all my adult life. And anxiety. And life. For people with a brain chemistry like mine, the whole bloody business of just being alive is dangerous and difficult.
I’ll tell you even more. I’m currently in the middle of the worst depression I’ve ever had. It’s been rumbling on for the last couple of years and it’s become almost unbearable. This bout has been triggered by a series of events so bizarre and extraordinary, you probably wouldn’t believe me if I told you. Which I’m not going to do, as everything I say these days ends up in the Daily Mail and this stuff is far too important to me to be treated like just another piece of crap Z-list celebrity gossip. Let’s just say I’ve hit several brick walls at once, and I’ve tried everything, and nothing works.
Today, my twitter and facebook timelines are full of lovely caring people saying things like ‘reach out if you’re down’ and ‘what a loss’. Wonderful sentiments, I’d say the same sort of things if I thought they would help.
Let me explain, as best I can through my foggy brain, what having depression feels like. For me, anyway.
I wake up very early every morning with a split second of OKness, followed immediately by a sledge hammer blow of despair to the solar plexus. If my anxiety is up, I feel what I call The Eagle of Fear flapping at the end of my bed, saying “I’m coming to get you” over and over again. I’m terrified. Sometimes I’m already crying. I don’t feel like I’ve been to sleep at all. My body feels like it’s made of lead.
The horror of having to do a whole day again comes crashing in and I turn over and try to go back to sleep. It never works, because my mind is shouting at me. “There’s no point! You’re useless! There’s nothing out there for you! Give up, shut up, you were never of any value! You can’t do anything right!” Or sometimes it just whispers, a non-stop round of shaming statements “nobody cares, nobody really loves you, you’re unlovable, who gives a fuck, shut up, you’re crap, you’ll never manage, you’re pointless, nobody cares, nobody ever will, nobody is bothered, shut up, nobody cares” etc. All day.
Trying to actually achieve anything becomes harder and harder. I’ve given up trying to raise the funds for college in October, as I can’t get a job that will help me repay the loan. This is the second year in a row, and I really want to retrain as a therapist. I did a week’s TV work recently because I desperately needed the money. I managed to ‘act’ my way through, I was quite convincing, but I couldn’t leave the house for four days afterwards. I can do some things, like drive, as long as the Sat Nav tells me where to go as I can’t seem to remember any routes. I spend my days either walking around outside, looking at people living their lives, wondering how they do it; or inside, on facebook then twitter then facebook, obsessively, wondering if I’ll ever have a life again. I can’t imagine how anyone gets anything together like a holiday or a fancy dress outfit or even a family lunch. It’s like I’m looking at the world from behind a window, but I don’t want to knock on it in case everyone turns round and looks at me.
I’m already finding writing this really hard work, and am tempted to stop and delete. But I won’t. I can’t. I mustn’t give up. I’m trying not to think about what you’ll think of me; but actually, to be honest, I’m beyond caring.
My depression is such that I want to die, but I don’t want to kill myself. There’s a difference. The feelings are so overwhelming and painful and huge that I know it would be so much easier to put myself out, then I don’t have to feel them any more.
But I have two children, who I love, very much, who need me to be here. Even in this state. I’ve seen the pain caused by those poor tortured souls who can’t take any more and leave for ever, and I’m not prepared to do that to my children or my family or my friends. For me, and I’m only speaking for myself, that would be a very selfish thing to do. So I just have to go through the pain, not round it or under it, just through it and I will come out the other side eventually. It’s better that just one person is suffering, rather than more. And anyway, when I’m good, I’m great. If I have to feel like the walking dead for the time being, then so be it.
I know I’ll get better because I’ve done it before, although this one feels like the worst ever but it probably isn’t, and because everybody tells me it won’t last for ever. It feels like it will though. That’s what depression is, an illness that makes you think its lies are the truth. An illness that wants to get you on your own. An illness that hates you. And it’s living inside your head, it feels like there’s no escape. An illness of feelings.
Which is why, dear caring lovely people, it’s impossible for those of us with depression to reach out to you, we’re stuck in our prison. We can’t ask for help. We don’t think we’re worth it, we can’t bear the thought of more rejection, we don’t want to rely on anyone because that’s just too painful. It feels like we’re stuck down a well and your ropes and ladders just aren’t going to be long enough. And if you ask us, we’re going to deny being depressed because we don’t want the attention, we just want to be left alone.
So, how can you tell if someone has depression? By looking very carefully. (It’s a bit like elderly neighbours in the winter, you have to look out for them, they don’t come knocking on your door asking for a blanket.) Our eyes are a dead giveaway. Literally. We are dead behind the eyes. We’re probably not in great physical shape, dirty hair, stained clothes, too thin or too fat. Or we’re ‘busier’ than usual, we’re on the run, we know what’s coming and we’re trying to get away from it. If we don’t balance our negative statements with as many positive ones, then there’s probably something up. We’re not good at returning phone calls, opening letters, dealing with emails and admin etc. We say ‘no’ more than we say ‘yes’. Actually, we hardly ever say ‘yes’.
I believe the days of “pull yourself together” are over, thankfully, and most people know that depression is a mental illness and not just a case of someone being a bit fed up. But it must be very difficult for you to watch your loved ones drowning slowly in what looks like a sea of self-pity, so what can you do to help us?
Of course, there are the well-known solutions to managing depression. Anti-depressants are brilliant, they provide a patch of blue sky in an otherwise clouded world, but it may take a while to find the right one. Therapy is great, as long as we’re ready. Eating is fantastic, but not always easy. Exercise is really good for us, but it’s hard to get the oompf together to get out of the house. Sleep is vital, but good luck with that. Here are some other things that might help:
Firstly, don’t try and cheer us up. We can’t be jollied out of this, it feels terminal and as Robin Williams has shown us today, it can be.
And please don’t expect us to tell you all about it. We can’t. It’s too big.
Your solutions aren’t helpful. Ask us what we want to do about it instead; it’s our illness, we know how it feels and we might not be ready to move yet. Hopefully we will one day, when we’re ready, but not right now.
Be consistent and reliable. If you say you’re going to call, then call. Don’t change the plan at the last minute. Please don’t let us down, even in a tiny way. Even if we don’t show it, we are grateful for your ability to be a constant in an ever-changing world.
Keep reassuring us that this won’t last for ever. We think it will. But we hear you.
Accept us as we are today. We’re not lazy, we’re unwell. It’s like a broken leg of the mind, it takes a while to heal. Don’t try to hurry us up.
Don’t be upset if we refuse your help. Keep offering it. One day we’ll say yes.
Walking’s good. Dogs are good. Walking dogs is great. But a day out at the zoo is too much.
Text us every morning, just to say hello. We won’t reply, but we’ll know you’re there.
Hold our hand. Give us a hug and don’t break away until we do. You may not be able to reach our minds but our bodies will register your care.
Don’t ask anything of us. We have nothing to give. You’ll be the first to know when we have. We can’t deal with stress, or pressure, or any of their more insidious relations like time-keeping and good manners. We are too busy trying to stay alive.
I agree, Robin Williams’ death is a great loss. But it was a bigger loss to him. He lost his self, his soul and his future. Why would he want to carry on?
If you’re depressed right now, then let’s remember that we only have to do today, that’s all. Nothing more. We can do just a day, can’t we? And don’t forget, we haven’t always been like this. The good days will come back. We’ve just go to do as much as we can, when we can.
When I’m better, I’ll write again and let you know what helped.
See you on the other side. Shazbat.
“Don’t take the car out unless it’s urgent.”
I just heard a weatherman say that on the radio. Now if, like me, you have ‘invincibilitis’, you’ll think you’re above warnings from people with qualifications in meterology and you’ll be absolutely fine. Well. Put your car keys down, chuck another log on the fire and listen to this.
On 5 January 2010 I got into my car with my son Ted, 11 at the time, and Godfrey the pug. (Who doesn’t live with us any more but that’s a whole different story.)
Godfrey’s only got one eye (an unfortunate incident with a rosebush) and so the other one was regularly checked out by a brilliant ophthalmic vet called Kim Jorgensen in Petersfield, Hampshire. The journey from Brighton normally took about an hour and twenty minutes.
The weather was typically January grey, not raining, just very cold. About six miles away from the vet’s surgery, it began snowing. Not normal flakes though, great big ones, like cotton wool balls. Ten minutes later, the motorway traffic ground to a halt. After a while, people began getting out of their cars; there was already about eighteen inches of snow. It became clear that we were going nowhere very fast, if anywhere at all.
I got chatting to a lorry driver called Jason; when he offered us his comfy warm cab for the foreseeable future, I quickly agreed. (Not without taking a photo of his numberplate first, I hasten to add.)
Jason was a treasure, shared his Coke with Ted and his corned beef with the dog. We were just rifling through his DVDs (and no, that’s not a euphemism) when the traffic started moving again, so we ran back to the car. Hilariously, the pug jumped out of the cab not realising how far up we were; Ted and I had to scrabble around underneath all the snow, but we found him, unharmed. (His face was like that before all this, I promise.)
And that’s where we stayed for the next ten hours. The cars in front kept stopping and starting. Forwards for 20 yards, stop for 20 minutes. Forwards for 50 yards, stop for half an hour. Eventually, the Army arrived to lift the abandoned cars out of the path of the snowplough. As the cars at the back of the queue tailgated the snowplough, we couldn’t get a place in the line. It took us ten hours to travel six miles.
Being programmed to be as good as my word and turn up for the appointment, no matter what, I did – at 3.30am. I drove past the surgery, not entirely sure what to do next. (I found out later that the staff were also snowbound, and we could have stayed the night there. Don’t.) Lost, I asked an RAC man who was parked up on a bridge above the motorway for a route home.
As he was talking, a TV camera crew appeared out of the darkness, from GMTV, wanting to know what it was like being stuck for so long etc. It didn’t seem bizarre, as things were already bizarre. I did my best, in the middle of the night – and with no make-up on I might add – and off they went. (It was later written in the Daily Mail that I had sought them out in order to further my career. I’m honestly not that clever.)
I did my best to get us home, but it was impossible. It began to dawn on me that we were stuck in the car for the night. Thinking it was a big adventure, having been told it was, Ted (and the dog) fell asleep and I began to freak out. Which was more likely to kill us: freezing to death while we slept, or the fumes from keeping the engine on? So I stayed awake all night, turning the engine on every ten minutes, for heat. My phone battery was very low and I didn’t have an in-car charger (I do now), I was – well, terrified. No-one knew where we were, including me. Panic.
As dawn broke, I realised to my horror that we had been parked very near a 24-hour petrol station, where people had been congregating in the warmth for the night. But we had smoky bacon crisps and cream soda for breakfast, so it wasn’t all bad. Ted loved it, the dog had a flapjack.
The Hampshire police diverted us to Haslemere, where cheery Dickensian stereotypes were sledging and snowballing, happy about the day off work. I hated the snow by now; after all, it’s just frozen rain with good PR.
Having negotiated the up-hill-and-down-dale nature of the icy country roads on no sleep, we crossed the border into Surrey, where the police made us turn back again. By now it was lunchtime the next day, I was exhausted and badly needed to rest, anything, before driving back to Brighton. My phone battery had finally died, and all the hotels were fully booked. In the absence of anything else to do, I parked up and had a cry.
Amazingly, a burly man in a 4×4 who was out towing stuck cars in a christianly way tapped on the window and offered to take us back to his house. I took a risk and said yes, thinking I could always kill him first and then sleep on his sofa. But Sandy and his family were just lovely, even though he woke me up after an hour to say it had started snowing again, we’d better leave now or we’d be stuck there for a couple more days.
He gave us a thermos of soup, and showed us an illegal route back onto the A3, which had been officially closed. That was an eerie drive, being the only car on the motorway, the snow making the road almost invisible. My most frightening moment of all was when someone threw a snowball down from a bridge; it hit the windscreen with such a smack that I thought we’d been shot at. I can still hear the sound now.
We arrived back in Brighton at 7.30pm the day after we’d left. That’s a 28-hour round trip. Fittingly enough, the same parking space we’d left from was free. (This is as rare as hen’s teeth in Brighton.) Ted and I and poor Godfrey took to the sofa and the fire and the telly in a big way, for a couple of days, until it had all melted away. I sent a lovely new thermos to Sandy, and I commended Jason the lorry driver to his employers. He hadn’t told them about us, because he’s not supposed to pick up passengers. But they can’t have been that cross because they sent Ted a model of their lorry.
I was heartened by the kindness of strangers, admiring of my son’s ability to adapt in adversity and utterly freaked out by the power of something that looks so innocent and beautiful but can be so menacing. Ted and I still aren’t keen on snow, it’s fickle and untrustworthy.
You know when they say don’t go out unless you have to? They mean it.
Dear Mr Cameron,
I’ve had a good idea. (I should warn you, I’m into people more than politics. Sadly these two don’t seem to go together any more, do they? I do think this suggestion might solve some of your problems though.)
So, here it is:
As I’m sure you know, single parents can only manage to keep their families alive by relying on benefits. I know we’re fortunate to have them, but it’s not enough to live on, it’s only enough for very basic survival. The Child Support Agency is about as useful as an ashtray on a motorbike, and there is currently no legislation in place to force absent parents to support their children in any way. We can’t get jobs because no employer is prepared to give us 3-4 months off work a year so that we can look after our own children during the school holidays. Childminders, nurseries and other babysitters are not only extremely expensive – they cost as much as we earn – but they don’t do nearly as good a job as we do.
(It might help to remind you here that most of the dissatisfied youth who were rioting in 2011 were from single parent families, out working during the school holidays to make ends meet, thus leaving their children to roam unsupervised. I haven’t got the actual figures, but I’m sure you have.)
And we want to work. It’s horrible not being able to support your own family, its demoralising being so powerless and we’re being forced to set a bad example to our kids. Believe me, we’re isolated enough without being refused entry to the workplace as well.
Students suffer similar problems. They too have to sign off from Life. From the minute they start to study, they not only stop earning a living but also owe you a huge amount of money. I’m sure they’d like to work some of that off as soon as possible, and support themselves into the bargain, but what employer would only need them 3-4 months of the year?
I’m sure you’re there already, but just in case:
Jobshare! The single parent could do it during term time, and the student during the holidays. Your Benefits costs would go down immediately, and your Student Loans would be paid back sooner. And if you gave employers an incentive to put a scheme like this into place, well, I can’t see why it wouldn’t work. Good idea, isn’t it?! I think so.
But then again, I’m not into politics. I’m into people. Maybe we should talk to each other? I’m free all day every day – during term time.
With love and hope, you just never know,
Well, it’s a beautifully sunny Sunday morning in October (anyone else old enough to remember ‘seasons’, ah those were the days, eh?!) and I’ve been prompted to post here once more. People have been kind enough to ask how Ted and I are getting on, now that he’s away at school, and so I thought I’d tell you.
The two-hour drive to the school was fine, business as usual, we had the normal argument about what music we listened to. (I’m not a massive Iron Maiden fan and he’s not keen on The Carpenters, for some reason. We compromised with the Kaiser Chiefs.) It was no different than any other car journey, except for one small moment when his great big hand clasped mine.
“You OK?” I asked. He nodded, with a crinkly smile, and took his hand away to turn the music up. I cried at the windscreen for the rest of the trip, and he predicted a riot over and over and over again.
He’s living in a house with eight similar 13 yr-old boys and a wonderfully tolerant and smiling houseparent, who is known as ‘Miss’. There are three beds in his dorm, which has an ensuite bathroom. There’s a massive TV downstairs, a computer, lots of squashy sofas, a kitchen for toast and snacks and they have a house meeting every Sunday night. I think it’s probably nicer than being at home.
After a meeting with the senior staff and headmaster, I tried to hang round for a bit but Ted made it quite clear he wanted to get on with his new life now. So I took a deep breath, and asked for a hug goodbye. He refused. He ran upstairs to his new bedroom instead.
Even though I know what he’s like, and that he didn’t mean to be mean, I was upset because it wasn’t the goodbye I had planned for us. There were no speeches on a ‘thank you for all you’ve done for me’ theme, no whispers of being strong for each other, no dry ice. Typical Ted. Unpredictable right to the end. I was hurt, but I shouldn’t have been. That’s the thing with these children, nothing is as it’s supposed to be. I nearly managed to laugh about it on the way home.
To an empty house. I didn’t feel I could go in. I sat in the car for a bit. Eventually I dashed in, grabbed the dog, and walked him round and round the block until I felt ready. Nobody there. I can’t remember what I did, but the next morning I didn’t have to wake Ted up for school, I didn’t have to wake up at all if I didn’t want to. I didn’t have anything to do. I didn’t have to do anything.
My lovely daughter (@Molly_McQueen) is now 24. So for 24 years, I’ve been a mum, first and foremost. I am no Mother Theresa, I can assure you, my kids will vouch for that. I swear too much, I am always late, I am not very good in a kitchen scenario. (I once made Molly a pizza that still had the polystyrene bottom on it. Luckily she noticed after a couple of bites. She got me back by phoning a kids TV show and winning a competition called ‘My Mum’s A Rubbish Cook.’ They sent us a Chinese takeaway.)
But I’ve always taken being a parent very seriously, as any decent human being would. It’s only now that I realise how much I’ve shaped my life around theirs. Don’t get me wrong, I haven’t sacrificed everything for them; I’m far too selfish, and I abhor spoiltbratism with a passion. And I’ve certainly not made either of them my partner – just reading the phrase ‘emotional incest’ put a stop to that. But I think I found a way for us all to rub along together, and now I don’t have to any more. And that feels most peculiar.
I kept in touch with Ted for the first week. Or rather I tried to. He wouldn’t respond to any texts, or answer his phone. I had to phone Miss to find out if he was OK. Was he showering every day? Did he have enough tuck? Would you mind cleaning his glasses for him while he’s asleep?
Back home, I couldn’t get used to the empty house thing, and so I became very Busy. Having only ever walked to the car, I signed up to run 10K for Amaze in November, which means lots of training and complaining three times a week. Mealtimes didn’t happen, I ate odd things at odd times. I drank more coffee with more friends than I knew I knew, I made lots of lists about lots of things that had to be done immediately, I walked the dog so much that he hides now when I fetch his lead. I tweeted so much that I tried to unfollow myself as I was clogging up my own timeline.
After about ten days of this empty nest mania, Ted began to communicate. He texted ‘cm’ which means ‘call me’ in teenage monosyllabia, and to cut an already long story short, he came home for one Saturday night. (Only to pick up his Games Workshop stuff, it turns out, but still.)
As soon as I saw him, I could tell he had already changed. He was brighter, he held his head high, he actually smiled at me. In the face. As soon as we were away from the school, he gave me a hug. A big one. He told me he’d missed me, but he’d missed the pug more. I was happy with that.
On the way home, he told me he’d learnt how to cook and that he’d like to make meatballs and mashed potato for supper. “It’s much easier than you think, Mum.” He’d been teased by one boy, and the school had sorted it out immediately. There weren’t any hot girls in his year. He was in the top stream for everything except Maths. He’d lost all his pocket money the first weekend, shopping in Southampton. He liked all the teachers, every single one. He’d only had two showers. For some reason, his glasses are getting much dirtier than usual. He needs a laptop to play Minecraft on. He feels really happy, all the time. He really loves me but no offence, the food’s much better here than it is at home.
As anyone who has any experience of Aspergers will tell you, this was quite a speech. I’d never heard anything like it. Over the weekend, it became apparent that Ted’s needs are finally being properly met and that the fine young man I always knew he could be is being made now. When I took him back, another boy ran out of the house to greet him excitedly, he was pleased to see Ted and Ted’s never had that before. He’s never had a friend, or a sleepover, or any form of true companionship. That boy came to stay for two nights last weekend, and the sound of them laughing at some nerdy geekfest on the computer was just heavenly. I thought my heart was going to burst with gratitude.
And knowing this has given me permission to get up and get on with it. I know it’ll never be the same again with me and Ted, my work with him is done, but it’s time for us both to move on with our own lives. I’m finally enjoying the freedom that I used to yearn for, and so is he. I’m doing slightly less staring into space and rather more stepping out into the world. Stand back Martine, this is MY moment!
When I drove Ted back last Sunday, I asked him to mark the school out of 10. “That’s easy”, he replied, “20.”
No wonder he’s not in the top set for Maths.
Hello! It’s been a while since I posted anything here, but now that it’s September and backtoschool, lots of people have been asking about Ted and his education, so I thought I’d let you know what happened over the summer.
The response to the blog was totally amazing, over 23,000 hits to date! Unfortunately the Daily Mail and their online readers chose it as a reason to redefine the word ‘vicious’; the Daily Express devoted a whole page to my life and where I’d gone wrong, in their not-so-humble opinion; even a Daily Telegraph reader accused me of ‘jumping on the autism bandwagon.’ And it’s a bit odd to be driving your car, on the school run, listening to a breakfast radio show discussing your life as a phone-in (“Would you sell your house for your child’s education? Call us NOW!”) but without exception, the tweets and emails I received were absolutely fantastic. Even though our world is coming across a bit shit at the moment, please believe that there are some really amazing people out there.
One in particular. A couple of days after the blog, I received an email from someone I’ve never met. Nothing new there, except they were offering to pay for a year’s school fees for Ted. I KNOW. A year. The whole lot. For a year. Just in case you’ve forgotten, that’s £31,000. For my Ted, who they don’t even know. Safe for three terms. Just because they are kind, really kind, really really kind. And they can, and they wanted to.
Well. As I had already turned down twitter’s lovely offers of a justgiving page and comedy benefits etc, I said no to this too. It was – well, too much. I couldn’t take it. I burst into tears. But they insisted. “Think of what’s best for Ted” they said. I rang a very wise person. “Take it.” So I stopped crying, and thanked them instead.
(I won’t be divulging who this is, because they wish to remain anonymous. That’s the very least I can do.)
I still can’t believe it. I still haven’t found the right words to say the kind of ‘thank you’ I feel. I have no idea how to behave towards this sort of kindness and generosity, I didn’t know it existed. A simple ‘thank you’ is not enough, but it has to be, for now. Thank you.
So he’s off on Tuesday. To the school of our dreams. He can’t wait, I’m dreading it, but of course I’m excited too. It’ll be a new life for both of us. I’ll keep you posted, if that’s OK. I honestly want to thank all of you, everyone’s been so supportive and helpful and just lovely. I just want to run round to each of your houses and hug you all personally. I’m sounding like a beauty queen now, so I’ll shut up.
One thing, before I go. When I first spoke to this wonderful person, they said “I just want you to know that the world can be like this.” I often read about people in far worse circumstances than us, and I’m sure you know many others in horrible situations too. Please pass on our story to them, because they should know that the world can be like this too.
(PS If you’d like to thank them too, please leave a comment here. I’ll make sure they see it.)
Wow. What a day.
As a result of the blog, I’ve had offers from all sorts of people to do all sorts of things. Form a charity, put on galas, give me the proceeds of their lottery wins – if they happen – quite incredible. I gained over 1,000 followers in 24 hours, the blog was viewed by over 15,000 people yesterday! Twitter, you are amazing. My eyes are stuck on wide-open, I still haven’t blinked.
The thing is, it was never an appeal for money. I was just explaining to the concerned 10-15 or so tweeters why I was selling my house to pay for Ted’s school. I had no idea it would take off like this. Even @Glinner RTd it! And while I’m absolutely bowled over by all your kind offers of money, I just can’t accept any of them. It just wouldn’t be right, I’m sure you understand.
If, however, you really want to help other parents with special needs children, there is a brilliant organisation in Brighton called Amaze who have supported many of us in so many different ways. They ran the course I went on, at no cost to me, to meet other parents in a similar position. We carers can accompany our kids to the local cinema for free on their Compass card scheme. (Ted’s very proud of this, he likes to ‘treat’ me.) They helped me fill in Ted’s Disability Living Allowance forms, I cried at least three times during this, they’re so complicated. Here’s the link: http://www.amazebrighton.org.uk/ There’s a ‘Donate Now’ button on their home page.
I think it’s worth saying that I deliberately didn’t write the blog as an article for a newspaper, because I honestly thought I was only sharing it with a few twitters, I didn’t see it as a matter for the tabloids. Unfortunately, some of them have picked it up and are apparently running their own version of my life tomorrow. This may well be a mish-mash of inaccurate facts and irrelevant past activities; or it might be a well-researched piece which will be both informative and interesting… let’s wait and see. I just hope it doesn’t annoy the school and put them off Ted before he’s even arrived.
Finally, dear twitter, if I could come round to each of your houses and personally thank you, I would. I have never, ever, experienced such warmth and kindness and understanding, and – well, love. As my friend @Geofortean would say, you’re the nicest friends I’ve never met.
And this isn’t the last you’ll hear from me either. I’ll keep you posted and would love to hear from you too. Really.
Thank you, thank you, thank you.
Lots of love,
PS Ted says “Hi”. Cool customer.
Hello! I’m very sorry but this first blog is very, VERY long. Over 3,000 words! I don’t have a short-winded bone in my body. But it’s a very important issue, and I reckon it needs the time and space to be looked at from all angles. Anyway, here goes:
I thought I’d explain my recent tweet…
@Annabel_Giles Just found out we’re definitely not getting the funding for Ted’s next school, so I’m going to have to sell the house.
…because I got such an overwhelming response from lovely people who were concerned/confused/offering help. (And the odd one or two who were – well, odd.) This isn’t a case of a posh boy not wanting to go to the local comp. It’s a tricky situation, and one I have thought long and hard about, but am I doing the right thing? See what you think.
To give you some background information, my son Ted is 13. He was born with 47,XYY Syndrome http://en.wikipedia.org/wiki/XYY_syndrome and later on he was diagnosed as being on the autistic spectrum, presenting with mild Aspergers Syndrome http://www.autism.org.uk/asperger but basically he’s a one-off.
His father left us when Ted was only two weeks old, I don’t know why. I’m not going to say too much about him because he’d like that, but he has been in and out (mostly out) of Ted’s life ever since. He currently lives in Los Angeles, has bought a house and got married and they’re expecting a baby. He hasn’t spoken to Ted since his 10th birthday. He hasn’t paid a penny towards his upkeep since then either. Occasionally they email each other, but Ted gets very upset at even the mention of his name. It’s a horrible situation, and I’ve tried to change it, but I can’t.
When Ted was younger, he was what the experts call ‘challenging’ – what us parents call ‘a bloody nightmare’. At 7 years old, he was asked to leave the little private school in Kew which his sister (@Molly_McQueen, now 24) had been to as they couldn’t handle him any more. They advised that I move him into the state system, which I did. He hated the change, and his distress turned his behaviour bizarre – he licked people’s shoes, he urinated on the classroom wall, he showed his bottom to the younger children, but worst of all he clung to me when I dropped him off every single day, begging me not to leave. On the last day of that first term, a parent told me the school had a SENCo (a Special Educational Needs Co-ordinator) – being from the private system I didn’t know there was such a thing – who hadn’t ever made himself known to me. I made a few phone calls, discovered that Brighton is great for children like Ted, and we moved there as soon as we could.
His next school was a tiny one in a rambling suburban house. It too was private, and Ted’s experience was not unlike being home-educated. Except that if I was the teacher I would have spotted that he stuffed his homework behind the radiator, week after week. He hated it there, but I made him stick at it. I regret that now, I should have listened to my instinct. I’d had my suspicions that he was being bullied, but the head teacher always denied it, saying he had a persecution complex. (He does like to play the victim, that much is true.) Once I had confirmation volunteered from a pupil that this was indeed the case, we left the next day. It was ten days before the end of the summer term.
Some friends of mine who also had a difficult son told me that the local primary school was excellent for chaps like Ted. I went to see it, with an open mind, and really liked it. The staff were friendly, the pupils were happy, there were other children there with similar requirements. He was all set to start there the following autumn, when his dad suddenly reappeared and insisted that Ted continue in private education, in “the best school money can buy.” I was very apprehensive, to say the least. I knew that I didn’t have the earning power to sustain the school fees (£4-5,000 a term) but his father promised that he would “never let his son down.” Hmm. Then I saw the school, St Aubyn’s in Rottingdean, and met the headmaster, and I knew this was the perfect place for Ted. It was a small school, maximum 10 in the class, kind but fair. And he could board the odd night here and there. Again, I ignored my instinct that we were getting into something we couldn’t afford, and agreed to his father’s plan.
Ted had to be assessed before he could go there. That’s when they discovered he has autism, along with low muscle tone and sensory processing problems. If he’s in a loud place for too long, or over-stimulated, he gets migraines. Last year he was diagnosed with an inoperable cavernoma, an abnormal collection of blood vessels in his brain, which could burst at any time, resulting in a stroke or death. Especially if his head is knocked around. He can’t play rugby, or do anything ‘rough’, he needs gentle handling. I try not to think about it too much, or I want to get the cotton wool out…
Ted loved the school, and blossomed. Since he’s been there, he’s changed from a tantruming, violent, crazy boy into a peaceful, mature, only sometimes crazy boy. He’s worked very hard to learn how to behave differently, the teachers have been very patient, and I have nagged and cajoled him into submission. At 13 he’s 6ft tall so far, size 11 shoe and his body and mind are currently having a puberty party. I now know what testosterone smells like, and it’s not nice. He’s becoming very teenage, and even more difficult than a ‘normal’ teenager due to the extra ‘Y’ chromosome. I think we’ve outgrown each other; he needs more than just a middle-aged woman in his life, and he craves male company. I feel my work with him is done, I can take him no further. And, to be really honest, I’m absolutely exhausted. We both need to go away, in order to come back…
Needless to say, his father soon stopped paying the fees and I paid for as long as I could, until I completely ran out of money and had to go on benefits. The school, God love ‘em, said that he was doing so well it would be a great shame if he had to leave, and (having means-tested me) they gave us a 100% Bursary. This is unheard of in private schools, and their act of sheer kindness and generosity still makes me cry when I think about it.
But St Aubyn’s stops at age 13. The question of ‘where next?’ had to be addressed. I went to the local authority Special Needs person, who said until I came into the state system they couldn’t really help. I didn’t have the money to get him assessed privately. And it was unlikely he would be ‘statemented’ (a lengthy testing process which results in the Local Education Authority being obliged to provide what he needs) as he was doing so well now. We would have to wait until he went downhill again before we could start the process. I’m sorry, but I can’t let that happen to Ted.
Brighton parents who have ‘normal’ children at the state schools will tell you they’re OK; there are certainly two which are better than the rest. But I just did a course with other parents of children with special needs who attend these local comprehensives, and their special needs are not being met. I was introduced to the headmistress of a special school who said it would be “disastrous” for Ted to undergo such a radical change at this age, with his conditions. Apart from anything else, the noise in a classroom with 30+ children would be unprocessable for him. Some of these schools have 2,000+ pupils. The same would go for a ‘normal’ private school (ironically called public school, when it’s for anyone but them) (oh stop it, that was a joke) – it would be a waste of money, because he wouldn’t benefit from it in any way. He needs more help than they can give him.
And call me old-fashioned, but don’t children like to bully anyone who’s slightly different? Ted’s a boy who towers over everyone else, who cries if pushed or even touched without his permission. I’m just not prepared to chuck him in to that environment and see if he manages. I know he won’t – and so does everyone else. This would need very careful monitoring. His headmaster said it is imperative that he attend a small school, or he wouldn’t be able to cope. I would be a bad mother if I ignored that advice.
So Ted and I went to see every small fee-paying and non-fee-paying school in our area. There aren’t many, and the ones we did see were a bit too ‘special’ and gave him the creeps. There was one which might have been good, but unless I paid for a current assessment of him they wouldn’t even let us see round. And they only went up to 16; by the time Ted had settled in (he’s a slow adopter, that’s an understatement) it would be time to leave and get used to somewhere else.
I thought about home educating him, but I don’t know who would kill who first. And I’m not an educated person myself; I went to a girls’ boarding school and came away with just 4 ‘O’ levels and no ‘A’ levels, but the ability to iron a man’s shirt in the right order. (Collar, yolk, sleeves, front to back to front clockwise. God only knows what would happen if you did it anti-clockwise, he’d probably end up having an affair.)
Then a friend told me about this school, www.stanbridgeearls.co.uk. I met her son who had been there, and despite his obvious difficulties, he was in the middle of a degree at University. I met his friend, who didn’t even speak when he got to the school, who was now driving a car and frankly catching up for lost time in the chatting stakes. Both boys were unreserved in their praise for the school, and a little misty-eyed when talking about their time there.
We went to see it. Wow. You know when you step into a place and you just know it’s right? That. Their policy is to make each child excellent at something, so that the rest doesn’t matter. It’s so revered in its field, Cisco have paid for a building there. The staff are so passionate about their different way of doing things that I wanted to sign up for teacher training on the spot. It’s a boarding school, because they teach them all day and most of the evening too, everything from social skills to building your own computer from scratch. They educate pupils in classes according to their ability, rather than their age. That shouldn’t be radical, but it is. That school stank of success. Ted, who is autistic and therefore not keen on showing emotion, got very VERY excited.
My father paid for him to do a three-day taster session. The school assessed him while he was there and got him absolutely right first time. He’s not news to them, they catch the children who fall through the gap between ‘normal’ school and ‘special’ school. Ted was shiny-eyed when I picked him up, babbled on about it all the way home. With that lovely innocence he has, he said “I’ve got to go there Mum, I’ve got to!”
As you can imagine, this kind of education doesn’t come cheap. It costs – are you ready for this – £10,366 a term. That, as I worked out with rising hysteria and a calculator, is £2 short of £31,000 a year. And that’s just the basic, that doesn’t include school trips etc. But it does include the one-on-one help he needs to unlock that clever brain and apply it to his own future, rather than using it to wipe out all the opposition in Games Workshop. In short, it’s the difference between him scudding along on the seabed of life, or being equipped to swim on the surface with everyone else. I decided I had to find a way of getting him there. My instinct said this was the right school, and I wasn’t going to ignore it again.
Now I am not a rich woman. Without going into it too much, I gave up my television career when I had Ted because he was so difficult, I couldn’t get anyone else to look after him. So I wrote novels from home, but couldn’t stand being on my own so much of the time, with someone who only spoke obsessively about Pokemon for company. Then I sold a big house for a smaller one, to fund focussing on him 100% as he was turning into a bit of a twat who would never have any friends. Now that he’s up and running and slightly more socially acceptable, I thought I’d go back to TV but it’s not quite that easy. You can’t just pick up the phone and say “hello TV, I’m ready to come back now.”
Despite having a brilliant agent now, the sainted @vivienneclore, the offers haven’t exactly flooded in. Vivienne is doing her best, and I’ve had lots of meetings thanks to her, but I’ve only done one ‘Vanessa’ – don’t – and one episode of ‘The Wright Stuff’ this year. We’ve been existing (rather than living) on benefits for the past two years. Until now I haven’t been able to get a full-time normal job because I can’t leave Ted on his own for the whole of the school holidays. Any money I earn would be spent on holiday clubs for him, but he hates them anyway. Now that he is older it’s more viable, but having applied for a few I discover that they give the job to the lowest bidder these days. The last one I went for turned out to pay only £16,000 p.a. – a wage only suitable for a young person still living at home or half a couple with another salary coming in.
So how was I going to find this enormous amount of money? The Brighton & Hove Education Authority weren’t going to pay for it, without a statement, and even then they’d probably insist he stayed in the borough. He couldn’t get a scholarship because despite having a brilliant brain, it’s not been ‘unlocked’ yet – although his literacy skills are way beyond his years. My parents are nearly in their 80s, and keen to hang on to what they’ve got. I’ve asked friends of friends of properly rich people, sent horrible begging letters, but they haven’t come up with anything so far.
There are, however, three charities who provide funds for children who can prove a need to go to boarding/private school and are suffering financial hardship. I filled in all their (very long) forms, gave them full financial disclosure, provided letters from his headmaster, my therapist etc. These charities depend on the school awarding a large bursary, and then they make up the rest between them. Apparently we had a really strong case; single parent family, child with specific needs, abandoned by a father who makes no contribution.
I was devastated when the school finally said last week they were only able to give us £1,250 per term. One charity dropped out immediately, as their rules state the school must give at least 40%. Another one said that even if they gave us their maximum award, I still wouldn’t be able to afford the rest of the fees. I’m still waiting to hear from the last, but the term’s finished now, it’s all a bit late. But even if they said yes, I’d still have to find over £7,000 a term. And although people think the benefits system is too generous, I can’t even afford the uniform right now!
And yet. The world doesn’t owe me a living, I realise that. I had done my best, but it hadn’t worked. Only last week did it occur to me that I didn’t have a Plan B. I did have some romantic notion of letting out the house while we went to India to build orphanages, School of Life stuff, but I realise now that we desperately need space from each other, not to be thrown even closer together. Our relationship swings from homicidal to suicidal on a daily basis, although we both really love each other, we really do. You don’t need two parents to make a family.
So. There’s nothing for it, I’m going to have to sell my house. I’ve got quite a lot of collateral in it, certainly enough to fund the next two years’ fees. The school has said that once he’s established there, he stands more of a chance of a bigger bursary as other funded children leave. I won’t get another mortgage, because I’ve had no earnings to speak of over the last three years. So I’ll come off the property ladder and rent instead.
Is that a good idea, twitter? Is that what you would do? I think it’s my only option. I also intend to start/buy a business with some of the money, to provide me with a regular income, stop the money disappearing too quickly. Being this poor is horrible, just trying to make ends meet is such a strain, especially when you’re supporting a child. I feel bad that I can’t provide for him without losing our home, but I feel good that I am giving him what he needs.
And guess what?! On Friday I had two pieces of good news, about some possible TV work. Perhaps this shift in energy is what we need. I think it’s important to focus on what we’re gaining, rather than what we’re losing. This way Ted gets empowered, and so do I. Maybe we can finally say goodbye to the dark days, and step into the light.
Thank you for reading all of this. And thank you for your kind messages of support when I slipped that tweet out, still in shock. As @TheSimonEvans said the other day, twitter is my village. Please feel free to leave any comments or suggestions you may have, all feedback is welcome. (Unless you’re one of those abusive bastards, in which case I’ll set @MrsQuimbly or @david_daly on you.)
Love you twitter,
PS You know what’s going to happen, don’t you?! Ted will emerge a genius, and then go to America to live with his Dad…