We’re on the move!Posted: July 10, 2011 Filed under: Uncategorized 68 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 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…
A touching, well-written blog. Really hope you can get employment soon. Those who believe that Jobseekers’ Allowance is generous have obviously never had to receive it. Fingers crossed for you Ms G.
I look forward to more blogs in the future 🙂
I second Rumpio’s comment, and as I said on twitter you really are an inspiration Annabel, I am sure everything will work out for the best. Don’t ever give up and keep up the blogging you are doing great. 🙂
bright blessings and best wishes now and always,
This is an obvious question which you are probably fed up with hearing but did you get a maintenance order when you divorced ? I’m guessing you don’t want to go the enforcement route anyway but it’s just wrong that you are bearing this burden on your own.
No, because we were never married. And the courts no longer deal with money, you have to go through the CSA who are the chocolate teapot of the single parent world.
annabel i don’t want to give unasked for advice but i think you should get some advice. father lives outside the jursidiction and on that basis the courts can deal with money. there are some really good internation family lawyers in london and they can give you some basic advice on that.
alternatively contact an american lawyer – americans don’t like fathers who dont pay for their children.
I can’t afford a lawyer, international or otherwise! There is a state-funded way of collecting money from abroad, I can’t remember its name right now, but I am assured it doesn’t work. Thank you though x
Annabel, your an inspiration to us single parents that want the best for our children !!!
I know how hard its been for you and to put all this in writing must of been really hard !!
We have sat for hours trying everything for this situation, I’m proud of you and I know Ted is as well !!
We will get throught this
Wow! You are an Amazing mum AMAZING! Ted is so lucky to have you. I hope things start to pick up for the both of you soon.
Totally think selling the house is the right decision and hope so much it all works out for you and Ted. His dad should hang his head in shame.
PS If by some chance I should win the lottery you can stop worrying.
Thank you for such an honest and heart rending post. It sounds to me like you are doing the best you can in difficult (understatement) circumstances. I really hope that Ted thrives in his new school and you find a great business that you love
Thank you for sharing your experience via Twitter. My experience with my daughter is different & similar.
She has Down syndrome, autistic spectrum & epilepsy has was subject to the ebb & flo of council educational policy through-out pre-school nursery, primary & secondary school. Now she suffers the political mince of welfare benefits cuts & a small-minded, ineffective local authority.
The best ‘thing’ for her has been getting in to the Camphill Rudolf Steiner community – & my initial experience of visiting their Aberdeen school with L was “this is the right place for her to be & grow”. Her place in a community for young adults is now under threat because she has needs that are too challenging for them. The council & local NHS will now only agree to ‘in authority’ placements so she is stuck between a rock & a hard place. They are more interested in promoting petty parochialism than caring properly for the most vulnerable people.
When L was young she had disturbed sleep patterns. At times (over many years) she would get up every 20-30 minutes during the night. No good for her & certainly didn’t help me. I still wonder how I managed to continue working etc.
I hope things do improve for you & Ted. No doubt you will have some people say ‘how brave you are’. What they don’t see is that it is a matter of what you are compelled to do, no-one else will hold Ted’s interests at heart in the way you do.
I was very moved by your blog. I do wish you all the best for the future. Please keep us updated. Love N x
I so wish I had an answer for you Annabel, I cried reading this as I can completely see where you’re coming from. Although my children don’t have the same difficulties as your son, my eldest (who is on the autistic spectrum) will be moving from primary to secondary and already the thought of it is keeping me up at night. His father doesn’t have a clue – according to him his son has “some kind of syndrome or something”!
I wish you all the luck in the world, please keep us up to date
What an incredibly moving blog. I have brought up a “difficult” child, nowhere near as bad though. I found the school system very lacking for these special children. How sad that you would have to sell your home, but equally how fantastic of you to consider doing it. Many wouldn’t. so you rent, no biggie. Good luck. X
What an unbearable situation. I wish I had better advice than buy a Euromillions ticket.
For what it’s worth, it sounds like you’re doing a great job with Ted. I really hope it works out for you both.
What a terrible position to be in Annabel, and I am amazed by your level of honesty. I do hope that you find the solution you need very soon. Renting is not so bad, but perhaps you could consider downsizing again first?
Best wishes to you both
Best wishes to you and Ted. You will get through this…you’re a Mum, it’s what we do. I often wonder what it is in fathers that enable them to walk away and appear to have no guilt/shame/duty, not sure what exactly it is they lack…balls probably. You are doing a great job, don’t doubt yourself even for a minute. x
You have highlighted so eloquently the hardships both in emotional and financial terms of having a child with special needs and being a single Mum. I also had a first husband that refused to pay a penny towards my children when we parted. The worry that it causes is terrible, and for you, coupled with a child that needs specialist help must be dreadful!
You are a truly lovely lady Annabel and life and all it brings can be so hard an painful and can smack you in the face so hard you stand back and say *Hey what the hell have I done to deserve this* You are a great Mum and Ted and you clearly have a very special relationship..a truly normal one of a Mum and teenager and all that brings!
To sell the house you share is a very big and brave thing to do but you have to have a forward plan and who know’s, it could end up being the best thing you have ever done.
Good luck with the tv work, it certainly will help the bank balance but also will help you to get self confidence and worth back which sadly seem’s to leave us women of our age and disappears who know’s where! If you find mine out there please send it back!
Thank you for sharing a very personal story with us. We may not have met face to face but we do share our daily lives together and feel like *Old Mates*…..
Thinking of you and sending a huge hug and loads and loads of support, hope and love!
Something good will happen I am sure!
Your twitter buddies @MrsAitchB xxxxx @MrAitchBee sends a hug from him too!xxx
I’m not terribly comfortable using blogs to communicate – do you have an email address I can reach you on?
you can email me through my website, http://www.annabelgiles.co.uk
We have been through some of what you have with our son who was diagnosed with autism when he was 2. However, we battled with the local authority for a statutory assessment (with a few hours’ help from a v reasonable but ferocious lawyer) and got him a statement. He is now coming to the end of a very happy first year in our local comprehensive (which, yes, has 2000 kids) but in an autism resource base attached to and integrated with the school.
I realise we are very lucky to be in a county where there are autism resource bases in several state-run schools, but I do know that other students in my son’s base are brought in from other counties every day, and I presume, their local authorities pay our local authority to fund their education and transport.
I also know of a family whose autistic son’s particular difficulties, they felt, could not be met within our county and on appeal, they won the right to send him to an out of county private residential school, funded by their/our local authority.
On a matter other than education, I have spoken to a solicitor specialising in working for families with disabled children and he said then (this was a few years ago) that if he was working for the child, the child then received legal aid (as the child himself was means-tested) so the legal work was free to the family. I do think it worth your asking advice on this, as a solicitor with experience in this area will know your rights and also may know your county council and how it works.
It is really not for you to have to fund your child’s education because he has a disability, and certainly you should not be losing your house, because the local authority are “fobbing you off”. Although my son is now in an ideal placement for his particular needs (and with the current LA cuts, I really hope this can continue), we have been fobbed off too many times along the way, so I really relate to some of what you are going through.
I so hope you can find a way out of this – it may mean a bit of a fight, but it will really be worth it. Can you ask around locally for a family law solicitor so that you can get some good initial advice? Do email me if I can help.
Good Luck to you and your son!
A very touching and honestly-written post, I’m so sorry you’re being put in this position. It angers me that the children most in need of educational support have to fight so hard for it. Or rather, their parents do.
Can we not start a Twitter campaign to get you on I’m a Celeb? 😉
In seriousness, I really hope life turns out like the movies and somehow, something will miraculously appear for you that means you won’t have to sell.
Again, I’m sorry you’re in this position, but even if he doesn’t realise it, Ted is blessed beyond words to have the implicit love and support from you. And you are blessed to have Ted to give that love and support to.
All the best,
my fingers and toes crossed and I think because of the shift in energy you will get Ted to the school.
Annabel, I’m a teacher and I can completely see what a sticky situation you are in.
If you want some advice on SEN/Statementing, please email me. I hope you are well.
A well written post.
Dear Annabel, your story is very touching and I sincerely hope that you get something organised for Ted and yourself. When reading about the situation, I wondered whether you had considered Steiner education, specifically in the context of a Camphill community. This may have been one of the options that you found ‘creepy’ I don’t know but I have seen such a community in action and noted the way in which the simple rhythm and routine of daily life does provide a safe, secure and stimulating learning environment. It also costs a lot less than 10k a term!
This is just a thought. I hope that you and Ted are both well. Best wishes and thank you for sharing your story.
We did go to see the Steiner school in Brighton when we first moved here, but they said he wasn’t suitable. Thanks for the suggestion though x
Annabel. I don’t know what to say but your honesty is truly humbling. I too, look forward to reading more blogs. Maybe another book deal on the back of it?
Very touching and very well written blog. Very difficult situation but it sounds like you’ve made some crucial decisions that will benefit you both. If you can turn a negative into a positive then you can only gain. Good luck with it all!
It’s not an easy option being on benefits …it’s a heck of a struggle just surviving week to week. Very few folk are there by choice despite what so many think.
All best wishes for the future ….
Oh, I’m guilty of thinking a sarcastic “boohoo, poor old middle class Annabel can’t keep her boy in private education”. So sorry, and so ashamed of myself. As a single parent with three kids who gets no support from their dad I’m well aware Of the futility of chasing absent fathers for money – CSA ha ha ha. I think you are doing the right thing, and am sure it’s going to go well. I have been loving your tweets and can’t wait to see/hear/ read more of you in the media. Love and luck to you and Ted xxxx.
I have a 13yr son who sounds very similar, not quite a six footer but on his way. I was a single mum when my son was struggling and got legal aid in order to get him statemented and then took the local authority to tribunal and won. Check if you are able to get legal aid for this, you shouldn’t have to pay for his needs to be met – check out the SEN code of practice and the Childrens Act of 1997- I think, something like that.
I help run a support group with The National Autistic Society and we hear from families in your situation sadly, all the time.
Wishing you all the good luck in the world.
Unfortunately, I think you have to be in the state system to be statemented. At the minute, Ted isn’t in any system. Thank you though x
I would get some advice on that, it doesn’t sound right to me. You could try IPSEA or SOSSEN or even The National Autistic Society helpline, Ted has rights. And you are very very welcome. All the best xx
Hi, this touched a nerve. I think you’ve now decided to sell up and I’m here to say “you have no choice”. It won’t necessarily be the right choice but it’s the only choice. We’ve spent every penny we have and any one else in our family may once have had on our son’s autism. He’s better than he was but by no means better. We’ve spent on excellent therapies (Son Rise, Growing Minds) and diet and medical treatment (also excellent). He’s not better – he’s better than he was when he regressed but not better better. We had no choice but to seek the best help for him we could. I highly recommend a charity called Treating Autism by the way as lots of noise sensitivity things with autism are related to gut problems. Take a look here http://www.treatingautism.co.uk. But overall, you have to do what you have to do. Even if that means renting, saying goodbye to your safety net of a house (which is major) and not really knowing whether you’re doing the right thing.
There are two of us – I take my hat off to you being a single parent and handling all these decisions. Check out also The Autism Trust, Directory of Grant Making Trusts and look on other autism sites for links to fundraising possibilities. And get on I’m A Celebrity next year. If they introduce a pre selection process we’ll all vote for you. Then not for any trials (bleaugh) but then again to win. Need to time that carefully. That would pay for a couple of years wouldn’t it?
It’s a tough one (I have a 12 year old son with autism). Good luck, I sincerely hope everything works out for you.
Hi I dont think it is true that you need to be in the state system to get a statement. My son has autism and has had a statement since he was 4 years old but was completely home educated (without state funding) until age 11.
It really is worth getting advice from a special needs education lawyer, some of them can still be accessed through the legal aid scheme (although I think it is called something different now) which is based on earned income so you should qualify.
Our child is 4 and has possible adhd and dyspraxia we have just got a statement for her, legal aid to get an assessment carried out by a private educational pyschologist, dla payments etc. You as a parent can request a statutory assessment at anytime and once you have done that then you can apply for legal aid to get a private assessment completed. Have you asked your gp to refer you for the ados assessment? The best thing you can do is log on to the mumsnet special needs discussion board you will learn everything you need to know about the statementing process. Good luck x
This is going to sound horribly pragmatic, pertaining to only a single sentence, BUT: my general advice to anyone thinking of starting their own business is this:
Whatever you think it’s going to cost; double it. And whatever you think you’re going to make, at least in that first year; halve it. If you at least prepare your budget with that in mind, hopefully the worst that can happen is that you’ll be pleasantly surprised when you end up with more in the kitty than you thought.
You should sell branded sausages. Celebrities and sausages always go well together.
I’ve not much to say apart from good luck and best wishes, you’re in a tough situation but I admire how you are handling it. I hope the good days start to outweigh the bad, and both you adn Ted come out of all this well xx
Oh Annabelle, What a truly duff hand you and Ted have been dealt. If you sell the house how will you pay the rent without eating into the school fund? I know little about autism or benefits but during the last few years my husband has been sick with the kind of anxiety attacks that leave a grown man sobbing in his car. As I earn such a huge salary as a retail manager (joke) retailers have no rights these days( if they are lucky enough to have a job), We where not entitled to any kind of support. I would seek advice as to how you can keep the house proceeds safe for Ted or the state will have you use it for rent and support! Good luck with all your en-devours. I feel very lucky to have raised two healthy sons who only needed the regular Parental worry and grey hairs. Not sure how I could help you but if you can think of anything (so long as it isn’t cash, i’m afraid we have none) ask away!
Hi Annabel sorry to hear how things have worked out for you and your son. Being a single parent myself I totally understand how difficult life can be. As you mentioned you have in the past done some writing have you considered doing an autobiography on your experiences as you are clearly very good at putting words to paper? I wish you and your son all the luck in the world ……..Steve x
Yes sell the house it’s only bricks. Rent and put money in trust for fees get hb. A house is pointless when it’s money you need.
Wow puts all my worries in the shade. Good luck you are a fab mum
Amazingly brave and honest post. It must have cost you to write it. I really hope you find a solution that works for you and Ted soon. It is so frustrating to have a child and see that their potential just needs a certain of type of place to free it. I opted for home-ed and my son is now 14 because the local schools (Brighton area too) just couldn’t deal with him and he sounds a walk in the park compared to what you and Ted have had to cope with. It’s not been easy, it still isn’t easy and we get no financing either – I spend sleepness (banging my head against the wall) nights over his future – but – it has been the best option for us and with a struggle we make it work. I wouldn’t really want to go through it again though.
I will keep everything that is crossable crossed for you and Ted.
How very honest and moving. You know, selling up seems like the end of the world but it’s not. When I was pregnant, I was diagnosed with ovarian cancer, my partner had to give up work as did I, our little boy had to be born very premature so I could start Chemo and have a chance of life and of being a Mum
We had to sell up because we went from 2 decent salaries to zip! We are now downsizing even our rented accommodation because the benefit system is a bit crap. Our prem little boy is now 2 and is turning into a bit of a special boy. Put it this way, he doesn’t fit in with the rest of his age group and he too is going to need an education that doesn’t exist in the state schools we have here. If I’m still alive, we will face the same problem. If the cancer is rude enough to bloody take me away before then, ironically, my insurance would pay for it. Life eh???!! Who knew? Wish I could help you but please know I’m rooting for you, Nia x
Wow Nia, you’re dealing with so much, you are clearly a wonderful woman. Lots of love from me and Ted xx
I was very touched by your post and wanted to say how much I admire your determination to get the best education possible for your son. Though it will be difficult, selling your house seems to make a great deal of sense. Ted will have the support and opportunities he needs and deserves; you will have the breathing space and resources you need to build a more sustainable life for both of you. I wish you all the best. I particularly hope that soon you get the chance to have more time for yourself and more FUN. You deserve it.
Wow, what a horrible situation. I’m on disability benefits myself and know how hard it is to just get by, but you have really had it tough. Ted sounds like a great kid and I really hope everything turns out well for you both.
Here’s my 2 cents, Annabel.
First, you need to get some publicity for your cause. You know the media, so use it to your advantage. Talk to You & Yours on Radio 4, ITV’s Tonight prog, South East Today, etc. See if they’ll let you do a report on your story. Surely you have some contacts on the tabloids too. Come up with a suitable angle (“Former Model May Have To Sell Kidney – Shock”). Or auction a date with your good self on ebay, if only for the publicity. Or hold a garage sale and invite all the media along. See if the Mail will let you write an opinion piece. If you’re really desperate you could even speak to the Argus, though they’ll probably spell your name wrong and write Cruft instead of Croft. 🙂
Secondly, I disagree with those who say you should sell your house. It’s presumably the only major financial asset that you have. Once you’re off the housing ladder it’s going to be pretty much impossible to get back on. If there’s any way you can possibly avoid selling the house, do so. Move into a caravan in the back garden and rent out the house if you have to. Selling up might help in the short term but won’t be so good in the longer term.
You have so inspired me. I am bringing up my 16 year old diabetic and aspirers grandson totally unsupported financially, but it seems trivial compared to your burden. My love and thoughts are with you and Ted. Be good to yourself xxxx
Hi Annabelle, I think you are a complete hero, we all have our problems, I gave up my career when my son Matthew was born very ill 9 years ago but now he is fine although he has toi have a couple more ops in the childrens hospital when he reaches pubity, but I cannot ever imagine coping with what you have been through, you know that you have many friends and don’t worry about the abusive people that’s what they want. Keep going mate and do what’s best for you and your son. Lots of love and xxxxx’s mate
Hi Annabel, Really was moved to read your blog. I now realise how lucky Ive been with David even though he is autistic and in a special needs school (probs one of those ones you found scary) I have always had Dave (his father) beside me and we have faced everything together however hard it has been. I really wish Ted’s father could read some of these replies, really don’t know how some people live with themselves. Thanks for being so honest its funny how you assume things such as she’s famous, on telly, quite posh so she must be loaded, how can she have worries like us normal people, just goes to show appearances are not everything. If I could help in anyway I would, I really hope that you do not have to sell your house and that there will be another way round it, please keep us all up to date with what is happening and fingers crossed that you will get the tv work or the break you and Ted so deserve. xx
Well,I think the blog was a great idea in the end – if only to show you all of these lovely people who support you and I’m guessing would help in anyway, if they could.
You never know – word of mouth works and someone could mention something to a friend, who knows someone……..
It must be truely horrible to have to consider selling your lovely home but you’re doing the very best you can for Ted and yourself in very difficult situation.
Remember the Twitter village is here for you, even if only to listen when you need to vent!!
Love Mandy x
ps – I’d vote for you to win on ‘I’m A Celebrity’!!
pps – I think you’d give the jungle hell!!
ppps – …..witchety grubs?!?!?!?!
Just want to wish you good luck in your efforts to get Ted into the right school for him. It’s ridiculous that there isn’t more help in this day and age, especially as we now know one size does NOT fit all.
Best wishes, Ellie
As soon as you have the school fees in a trust or whatever, get your name down for a council house. Cheaper and more stable than private rented (I had to push to get a one year lease instead of 6 months). Good luck, I really hope things improve.
All parents with autistic kids find themselves asking ‘why me?’ at some point, and come up with the answer ‘well, why not me?’ Doesn’t make it any easier. It doesn’t get any easier, the issues just change,
High functioning ASD kids do best within an ordinary school with appropriate support. That support has to be well trained, calm, suitable and stable. This is not often available within the state system. I say that as a SENCo from the state system.
My lad has autism (has a statement and has 1-1 support) and is coping in a small village primary now. He’ll not make the local comp though, he would be terrified. Our only hope is being able to afford Summerhill School (happily very close but expensive). We could only afford it if someone died though, so we face the prospect of sending him to the comp and him ‘not functioning’ there and taking the LEA to court to get them to pay for the fees….
It’s a proper shitty situation to be in. You have my every sympathy. You should be able to get a statement if you have recent reports from appropriate therapists. It will take a while. If you can then prove that there is nowhere else that can cater for your son via tribunal (SENDIST and IPSEA can advise) they might agree to some of the fees.
Of course if we let the Tory lead government have its way there would probably be absolutely no benefits for anyone. Those less fortunate can wither and die as far as they seem to think. Sorry for bringing government bashing into it but it angers me that good people like you and Ted may have to suffer due to lack of state care. But of course there’s the ‘big society’ so presumably you can get someone fully trained in helping people with Ted’s condition to do it all for free for you! Problem solved.
I used to know someone who worked with an autistic boy in a state school. They actually managed fairly well but there were obvious limitations. Getting him used to new classrooms was a constant problem. This child was lucky to receive the care he did. Unfortunately it all started to go wrong when the government at the time (Labour) decided to close the special needs school in the area and mix those into the same school. It was then definitely impossible to manage.
There just isn’t enough understanding of autism in society and I think that’s part of the reason there’s a lack of decent funding.
Anyway fantastic blog post, beautifully expressed and here’s hoping that more work comes your way. An elegant and intelligent presence like yours would be a delight to have on the screens once more. Do we have to start a campaign pestering TV companies to hire you?
I dont normally go on twitter but when I read your story this morning I had to make contact. I have funded my two sons and daughter through school right the way through to A levels successfully. On no account sell your house. I have a huge file here at home that you are welcome to which represents countless hours of research into grants for education and I do not believe that you cant find adequate funding for your child. In fact while I was disabled my children were all able bodied.
Briefly much of my work involved searching through the very extensive Charities Comission web site and working with one or two major charities to find the required funding. It took me the best part of a year but my file will enable you to access sources of funds quickly. Added to which there are charities that help disabled children.
My two sons were both educated at Worth School – not suitable for Ted perhaps – but take a look at their web site.
I am happy to send what I have wherever you wish with the proviso that you return it after use.
I am very curious as to which charities you have been in touch with. Somthing does not add up.
Another alternative would be for me to send you a list of charities that I used over the years but you would need to do additional research tofind charities that help disabled or autistic children.
All the best,
[…] Former TV presenter Annabel Giles explains in her blog why she’s selling her house to pay for a specialist school for her autistic son. […]
Thank you. Nice to see a sensible reaction from a newspaper. God bless you x
I work as a lecturer in science education at Sussex University, training teachers of science, so I’m not a special education needs expert, but my understanding is that the local authority should be able to provide for a statement of special educational need if an assessment shows that one is necessary.
The following is taken from the British Dyslexia Association guidance (different from your needs I know, but the guidance still holds I feel).
Getting started: applying for a Statutory Assessment.
A Statutory Assessment involves a full, formal assessment of a child by the Education Authority. This includes: – Reports from the Educational Psychologist (parents may well need to provide their own independent assessment if there is a reluctance to assess the child, or if they subsequently challenge a decision). – Reports from any other relevant body: school, medical, social services for example, plus parents and the childs own views. – Supporting evidence from anyone who may help the case, such as outside activity leaders (e.g. sports, Scouts/Guides etc.), neighbours etc.
It is important for parents to have confidence in themselves and their opinions and not be overawed by professionals. They are the ones who know their child best.
What happens if the Local Authority refuses the application?
The first step in an application for a Statement is to apply for a Statutory Assessment. You could make it clear at the outset that you are willing to challenge any adverse decisions in the Special Needs and Disability (SEND) Tribunal. This may help to further your cause.
Some Local Authorities refuse Statutory Assessments simply because they have not received adequate evidence from schools as required under the SEN Code of Practice. This is not a lawful reason for refusing an assessment. The authority should take active steps to obtain the necessary evidence.
There are a number of issues relating to the Statementing process which may need to be challenged in the SEND Tribunal. Do your homework and download the Tribunals guidance for parents on http://www.sendist.gov.uk
As I say, I’m no special needs expert and perhaps you have gone through this process already, but it seems bizarre to me to refuse an assessment given that you appear to have some supporting evidence from independent assessments and the schools seem to support you as well.
I have published this response because I believe it will be very helpful to those who are beginning their quest for statementing. As for us, Ted’s ability would not currently warrant being awarded a statement because he has improved due to having been in the right environment for the past few years. This is why he is going to his next school, it will help him to continue to improve. Please see the blog itself for further details.
I work at Stanbridge Earls school. It is a fantastic place and I hope that it will work it’s magic on Ted as it as it has on so many others. I am in the (fairly) unique position of working at the school that my brother attended – it was the best place for him and just about turned his life around.
I hope that Ted has a fantastic time there (I have no doubt I will come across him at some point, it being a fairly small place!) and I hope you manage to get some of your funding issues sorted. I recommend contacting IPSEA for advice on funding/statementing – they helped my Mum get funding etc for my brother.
Great to hear from you, thank you! I’m sure you’ll see Ted next term, he’ll be the only boy of 6ft in Year 9! Do come and say hello if you can x
Well i have to say this blog makes me sick as well as all the other sickly newpaper articles, you had a successful career and by all accounts made a lot of money, so why did you not put some away instead of freeloading on benefits, and i say freeloading because you have an expensive large house, you should be forced to sell it and finance your own life until the money runs out, its one of the most sickly blogs i have ever read, and now you are taking charity of a stranger to fund your over the top education for your son, and b4 you lecture i know of another child in the same position and he didn not need to go to a school costing £31 grand a year, so apparantly the house is worth £500000 and you have a quite a bit of equity in it, so sell it and support yourself, do you have no shame in coming out and talking about personal things regarding your son?, and why have you refused to name your sons father and go for support which clearly you would get if you outed him, im sure why on earth you are given newspaper ink i do not know, i have no sympathy for you whatsoever, i cant print what i think of z lister celebs like you
Hi Annabel, I found your blog when I googled your name while listening to a Radio 4 programme about the ageing process in famously beautiful women. It was so nice to hear your voice again – you have been quiet for ages.
I moved to Portugal when we had our son, just before his first birthday. We chose Portugal for financial reasons as I was the major bread winner and didn’t want to go back to work straight away – we are able to live mortgage free here.
Since we have lived in Portugal (6 years now) our son has been diagnosed with high functioning autism – and his father has been diagnosed with Aspergers Syndrome, which really explains his eccentric behaviour and inability to hold down a full time job. This sort of leaves me as the only sensible one in the household, so I completely understand your position as a single parent.
Anyway, the point is that the state education system here in Portugal is FANTASTIC. So much better than we would ever have expected. Our boy goes to a fairly big primary school in Alcobaca which has special needs facilities attached. The council even provides transport. All the extra help has been offered to us without us asking or making a fuss (because to be honest, our Portuguese is rubbish and we didn’t know what was on offer!)
We qualify for this because we are EU citizens.
I really do wish you all the best and I am sure you know your son’s needs better than anyone.
Good luck with everything, you really deserve it.
Just read your amazing blog, what courage and love comes through your words. Thank you for sharing it and just wanted to wish you good luck – for you and Ted and all your family. Hope you let us all know what happens.
Best wishes Jennie
What an inspirational read. I work in a school with autistic children and one child with a similar condition to your own son.To manage life on a daily basis on your own is an amazing feat.Selling the house is no big issue to be able to provide the correct support and environment for your son.I hope life takes a turn for the better and your son finds the support to fulfill his potential
Thanks for a marvelous posting! I seriously
enjoyed reading it, you will be a great author.I will make sure to bookmark your blog and
will eventually come back sometime soon. I want to encourage you continue your great
writing, have a nice weekend!