How’s Ted doing? And how are you?
Posted: 02/10/2011 Filed under: Uncategorized 9 Comments »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 he slid his great big hand into mine.
“You OK?” I asked. He nodded, with a crinkly smile, and took his hand away to turn the music up. I cried into 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.
Thank you.
Posted: 04/09/2011 Filed under: Uncategorized 33 Comments »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.
Thank you.
(PS If you’d like to thank them too, please leave a comment here. I’ll make sure they see it.)
The day after…
Posted: 11/07/2011 Filed under: Uncategorized 16 Comments »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. You even offered to launch a campaign to force me to eat kangaroos’ scrotums in the jungle. (Thanks for that, apparently they hate it if you do that, they like to decide for themselves.) 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,
Annabel xxx
PS Ted says “Hi”. Cool customer.
We’re on the move!
Posted: 10/07/2011 Filed under: Uncategorized 67 Comments »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 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.
21 hours ago Favorite Reply Delete
…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 to earn the big money to pay for this damn school. I nearly got ‘I’m A Celebrity Get Me Out Of Here’ last year; if I had, I’d be home and dry as it could have kick-started the old career and brought in the big bucks. Maybe this year…
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,
Annabel x
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…
