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Specialist autistic school
  • Hi, we are in the process of moving our daughter who is six (I'll refer to her as C) out of mainstream and into a special school. We are fairly well into it having viewed several schools and are pushing through the amended EHCP. Our problem is that the best school for C's needs, the only one in our area who could even begin to work with her, is an independent school. Obviously the local authority aren't exactly delighted about this. Our nearest catchment school is fantastic but autism is a secondary diagnosis ; the primary is complex and multiple disabilities which C doesn't have. The head there said they could look after her and make her settled but that's about it. So we know we have a fight on our hands, we understand about funding and all that.
    We have back up from our OT, Cs equine therapy instructor ( who was on the working group with Elizabeth Newson), Ask Nottingham and her current school ( as much as they can). What I need is any advice on how to push for the school we want and how to reject the others, and if anyone knows of any agencies, charities or anyone who can help represent us. We intend to fight it to tribunal if necessary, and we'll have to represent ourselves I suppose, so if anyone has anything to suggest or experience of a similar situation, any help would be fantastic.
    Thanks very much!
  • webbwebb
    Posts: 2,593
    Hi, I'm also in Notts, been through 3 Appeals and managed to get my son in Specialist education until 22 years old.

    Independent Schools can be expensive for LA's but it is about placing her in a school that can meet all her identified needs.
    Independent Schools can be very good if for ASD & PDA and have had training in PDA.
    They tend to have OT's trained in Sensory Processing Disorder and S&LT for Social Interaction and Communication Difficulties.

    So, the way to win an Appeal is to get the right evidence to prove her needs.
    If you can afford to you need an Independent Educational Psychologist assessment and report, S&LT asst and report and OT (trained in Sensory Integration) asst and report.

    This evidence should then prove to the LA and the Tribunal that your daughter needs the Independent School.

    Could the Ind School provide a report and go to Tribunal with you to state how they can meet her needs?

    The following Charities can help you -
    Education Equality

    Hope the info helps

  • Hi Happytheman, it’s so important to find the right setting for our children... we’ve just got our daughter into a specialist ASD school. It’s early days, but I’m so impressed with their understanding of her and the range of strategies they’re using to engage her. One other organisation I’ve heard of is Sunshine support. A friend of mine has had support from them and has been very impressed, so might be worth looking at?
  • webbwebb
    Posts: 2,593
    Sunshine Support - Derby
  • Wow that's brilliant thank you! We have an IPSEA lawyer calling us next week for some advice, so that one is in the bag. We're going to start calling the other ones on Monday.
    The school we want (Sutherland House) will support us at appeal and I think are going to write something when they come out to assess C. Problem is, anything involving paying out for reports and what have you is out of the question - we can't even afford to pay our water bill ha ha. But all the agencies seem to agree that SH would suit her best and the school ( who can't do enough for us - they are incredible) are really getting behind us. So we'll get in touch with these people and see what they can do for us. Thanks so much guys! I'll keep you posted how we get on, and anything else, any advice or anything is so much appreciated.
  • webbwebb
    Posts: 2,593
    You said - 'the primary is complex and multiple disabilities which C doesn't have. The head there said they could look after her and make her settled but that's about it. '

    If you could get this school to put this in writing it would definitely help your case!

    Visit all the LA Specialist Schools that your LA are thinking of placing her in and then compile a list for each one stating why they can't meet your daughters needs.

  • Hi, we've got our lists and the scary thing was how easy they were to make ie how little the LA schools can offer her. The head of the above school is sound and she's going to put in her report that they can't meet her needs. The only other real tricky one is Newark, but there's absolutely no peer group for her there. I'd rather home school her than send her to the other two we visited. One looked and felt like a converted Borstal and the other was just inflexible and authoritarian. For PDA kids!!!! C's pediatrician is the doctor for that school and she said no way would it be suitable. We now have to get her to put that in writing, which is going to be hard but we can only try.
    Just want to say, knowing people are reading this and rooting for us makes all the difference. It gives me strength and I can't thank you guys enough
  • RhanHRhanH
    Posts: 1,168
    Hi, I've just replied on your other thread suggesting you take a look at IPSEA, but I can see you know all about them already :-)

    With regards to the schools, even if you can't get written evidence from the schools/GP do write your comments/concerns down about each of the placements as the parents views should also be taken into account during the process (some counties are better at this than others!). We were certainly listened to and it was helpful to have visited each of the local schools to have first hand knowledge of why we felt they would not be suitable.

    I'll keep my fingers-crossed for you that the Padiatrician is able to help.

  • Thanks, I'm not sure she'll be allowed to word anything as strong as we want but if you don't ask! We visited the schools in our area and I'm currently writing up a hatchet job of each of them, ready for Monday. We spoke to the IPSEA lawyer today and she said in notts we'll definitely have to go to a tribunal. It's incredible really; all we want is for her to have the same opportunities as her twin brother who is NT. Anyone would think we're asking for her to be shipped to America to be educated the amount of fuss they make.
    As for Sunshine Support and all those, we looked into them and they are fee payable services. Sunshine Support starts at £44 per hour and claims to be taking elitism out of the process! £44 is pretty much our weekly food bill, we could never afford anything like that. Same old story I guess; if you're loaded you don't have a problem, if not then it's tough. Not that that will stop us. Just makes me more determined to stick it to them!
  • webbwebb
    Posts: 2,593
    So pleased you have an IPSEA Lawyer!

    If you have IPSEA, who are free and one of the best, you won't need any of the other charities!

    Not sure where you are in Notts but if you are looking for an Independent School have you looked into Dawn House (Rainworth) or Hope House (Newark)?

    I had to Appeal against Notts LA on 3 separate occasions but they did concede each time - the week before the Tribunal date!

    Wishing you all the best!

  • I don't know if it's significant, but the LA have asked Sutherland House to come and visit C at school. They sent one school to assess her without telling us which means they acted unlawfully; the IPSEA lawyer told us not to say anything yet and save it up as ammunition for any tribunal. Anything which weakens them strengthens us!
  • KobiKobi
    Posts: 52
    That's terrible that they did that behind your back, but sounds like you can turn it to your advantage. It really does feel like us against the world most of the time but you're doing amazing. :)
  • webbwebb
    Posts: 2,593
    It is best for Sutherland House to see your child in a school setting, so that they can see what she is like in school. Then Sutherland House can really determine if they can meet her needs and also which class they can place her in in their school.

  • Absolutely, but I was just thinking that they don't ordinarily ask independent schools to do assessments. At least so I've been told but I might be wrong there. It seems like every professional has a different take on things. Probably best to stick to what we know than speculating
  • webbwebb
    Posts: 2,593
    Are IPSEA going to represent you at the Tribunal? If not try NAS, they can offer a solicitor for free sometimes.

    What date is the Tribunal? Have the LA named a school yet? When they do you will know what type of 'battle' you are up against.

    Sutherland House should have looked at your daughters EHC Plan and at least observed her in school before saying they could meet her needs, so I am pleased to hear they will be going to see her in school.

    Hope they will still say that they can meet all her needs and have a peer group for her.

  • They've said they can meet her needs and create a managed peer group which is great, but Newark orchard are after her I think. But there's no peer group there. Ash Leigh also said they could meet her needs which is ridiculous. The kids there are complex and multiple disabilities. She needs a specialist autism and PDA setting to even start getting on. It's really made us angry because the head of Ash Leigh told us they could look after her but couldn't bring her on, and then told the LA they could take her in September.
  • It’s really frustrating isn’t it... we had a specialist independent setting say they could meet my daughter’s needs but again there was no peer group and the children at the setting presented so differently to her. Really hope you can get the right place for her.
  • webbwebb
    Posts: 2,593
    Local Authorities dictate which of their LA Special Schools should take which pupils - not the schools!

    But, your LA will have to stand in Tribunal and prove with statistic & evidence etc that Orchard School or Ashlea School can meet her needs and have a peer group for her.

    At the moment your LA have told Ashlea that they must take your daughter - it doesn't mean to say that the school can meet her needs, these 2 things are different.

    You and your IPSEA Rep need to find out if these 2 schools have ever taken any children with PDA like your daughter and also if they have had any PDA Training for their staff and if their are any children similar to your daughter who would be a peer group for her.

    There is a big difference in cost between Sutherland House and Ashlea approx. over £20,000 a year - I think this is why your LA want her to go to Ashlea !

    Keep going with your Appeal.
  • There is no peer group at Orchard, that's for definite. Their SENco said that pretty definitely. As for Ashlea, the class they want to put her in has girls, but they are older and there are older boys in there which presents a real worry for us because of certain behaviours she exhibits. She simply can't be put in with older boys. The EHCP is still being finalised, and I hope that once they see how extreme her needs are they will say they can't meet them.
  • webbwebb
    Posts: 2,593
    Hi, I really hope so too.

    You are right to go for an ASD school which has good experience and training in PDA.
  • Newark orchard have assessed her and say they can meet her needs. That was today. C's TA grilled the SENco about how they were going to meet her needs and she seemed pretty impressed, and they're going to create a managed peer group for her. We're still going to aim for Sutherland House, but if it goes pear shaped then Newark might not be that bad an option. Do you think we should ask for a meeting with the SENco there and ask how he's going to meet her needs?
  • KobiKobi
    Posts: 52
    It can't hurt to ask if it will put your mind at ease or help you decide. I'm just really pleased that things are going in the right direction for you :)
  • webbwebb
    Posts: 2,593
    Hi, many parents visit a prospective school at least twice, so it won't do any harm to meet with Newark Orchard SENCO and ask a lot of questions.

    Q's -
    1. How many children with PDA do they have in the school?
    2. When did the staff last have training in PDA?
    3. What would her class peers or peer group look like in terms of their diagnosis, IQ and language skills etc
    4. Do they have therapists onsite or do the NHS therapist come in to deliver S&LT & OT etc
    5. Can you have a copy of their Behaviour Policy and can they explain what they would do if your child behaved inappropriately.
    6. How many children and staff will be in her classroom?

    When you have had the meeting with the SENCO, you can then do your comparison list again ie Pro's and con's of each school.

    Hope this is helpful.
  • Yes thank you that's exactly what we need! Ok I think that's next thing to do. The main sticking point for orchard with us is the fact that they haven't actually built the school yet. The old one is literally falling apart and the new one won't be finished until summer so it's kind of hard to know whether it's right for her. But yes we'll meet with whatever his name was from Orchard and put him through the mill again
  • We had some good support from places we didn't want our son to go. And great support from his mainstream SENCo - she gave us every single incident report so I had a huge pile...

    Don't overlook your IASS as support. Ours were great. We did pay for reports (but I agree utility bills do have to come first) but I'd say if you pay for anything, good reports from people who know the ropes are the priority.
  • The guy from Orchard doesn't seem to have read the EHCP! My wife spoke to him on the phone and he was unable to meet almost all of her needs. We're going to meet with him and get definite answers once the EHCP is signed off. It's starting to look like a stitch up by the LA, but we don't care. We can't afford reports or assessments or anything like that but it won't stop us fighting. Just because we're skint doesn't mean we're not entitled to a decent education for our daughter. I have my fighting head on now!
  • June67
    Posts: 851
    Yay keep fighting you are right that a decent education and appropriate provision shouldn't be just for the people who can afford to pay for fully detailed assessments. Persistent, and insistent pressure will be needed, along with bucket loads of paperwork.
  • We've contacted Nottingham Trent to see if they can provide a solicitor to work pro bono on our behalf. Fingers crossed they'll have someone
  • webbwebb
    Posts: 2,593
    Good idea, hope they have someone.
    Make sure they have SEND Law qualifications and experience of Tribunals.
  • My first email to them was a let down; they replied and said they didn't deal with SEN. However, I'd done my homework and was able to query it because their website says they DO deal with SEN. They emailed back and apologised and said they might well be able to help!
    In other news, C has had a fantastic Christmas day. Usually she hides upstairs, refuses her presents and meltsdown over everything on any sort of celebration but today she dived into her presents, played with her twin brother, came down for dinner, danced to some songs on her tablet and watched about a third of Home Alone with us! Really brilliant day.
    Thanks to everyone who helped me over the past few months and merry Christmas!
  • Merry Christmas to you! So glad you’ve had a good day. All was calm here too and my daughter managed to come and eat lunch with us so I’m happy :)
  • RhanHRhanH
    Posts: 1,168
    That’s great to hear - what a lovely gift for you :-). Merry Christmas!
  • June67
    Posts: 851
    So pleased you had a good day yesterday and some hope of legal help. We did pretty well by our standards for Christmas eldest even coped quite well when his gift card for his game website didn't work. Youngest did well playing some chess and board games with us and not insisting his brother did to so pretty happy all round. He even accepted his annual new pyjamas quite well although he hasn't tried them on yet. Only one issue last night when he insisted at half 11 that elder one must play two rounds of a new game because its Christmas. Elder one wanted to go to bed but capitulated so that a meltdown didn't keep him up any longer. (unfortunately its a grudge he is holding onto this morning..) I'm exhausted after a day being on edge waiting for things to explode, even when things are good I don't relax. I must learn to. Hope the next few days go equally well for you all
  • Ah that's one of the things parents of NT kids don't get isn't it! Even good days are wearing because they're only good if everyone walks on eggshells all day. We paid heavily in boxing day meltdowns ha ha. Well it wasn't so much meltdowns as a continuous 12 hour meltdown. After hugging her for some 3 hours she threw herself to the floor, so I tried to catch her and hurt my back so badly I can't straighten up. Sigh. The self harming has been shocking - and we're used to it. However, I went up in the loft and to everyone's astonishment she started climbing the ladder and said "I want a go". I've never heard her speak in a sentence like that.
    The legal clinic emailed me and fingers crossed they're going to represent us. I've got a meeting with the lawyer on the 3rd!
  • That’s great news you’ve got a meeting coming up. Sorry to hear about your back, hope it feels better soon. We had Boxing Day meltdowns too... Just new year to get through now! Hope everyone has a good evening x
  • June67
    Posts: 851
    Sorry to hear about the back, glad to hear about the meeting and the spoken sentence a really good Christmas gift. We're surviving here with medium level meltdowns on alternate days but not too bad. I think husband being more available has helped a bit. Yesterday younger one had friends over four over 4 hours and it went well eldest joined in periodically but not so much to take over. Think he enjoyed the break and freedom to play on his new games. We are lucky to have enough space to allow this. We are all off to the new star wars film later this evening fingers crossed, eldest is a bit concerned going to the cinema at 14 with your family is not the done thing cue lots of angst.
  • No I would rather have been boiled alive than go to the cinema with my family at 14!
    We had a pretty ropey day, her self harm injuries are getting septic because she picks at them, she poured all the milk into a bowl with all the sugar and spread it around the kitchen while I was decorating their bedroom and refusing to sleep because her mum and brother took the dogs out without her even though she loathes walking them. Almost happy to be back at work tomorrow! Almost.
    However, the lawyer is phoning me on Friday to discuss the case so that's brilliant.
    Now going to attempt to watch the rest of Dr Who without interruptions. Managed approx 1 minute 35 seconds before meltdown about an hour ago. Sigh.
  • June67
    Posts: 851
    Keep going you'll get there. Cinema was ok in the end. I'm hanging on hoping to keep them busy enough to reduce their stress so we can function, not always successful. Struggling a bit with raising a teenager for the first time (before taking the asd into account); I'm not sure what he is into or what I should be doing saying. I recall myself as a teenager and how nothing my parents tried was right so maybe that bit is the norm...I'm trying not to think about getting them back to school on time on Monday as we will all be stressed. Hope you get to see the rest of Dr Who soon.
  • My parents were a source of continual exasperation to me as a teenager so I don't know if it's perhaps magnified with ASD?
    She's been waking up at 3.30 every morning recently and stopping me from getting back to sleep which was bearable over Christmas. But I'm back at work now and I get up at 4.55am.She won't sleep until about 11pm so I am managing to grab a couple of hours a night which I simply can't function on. Her melatonin and alimemazine don't seem to be working anymore. I tried just now to go to bed at 9, but managed 10 minutes before she came up and started screaming because I'd left her. I had to get up just to quieten her down. So no extra sleep for me. I'm already getting ill from tiredness
  • And sure enough, I'm still up and probably will be for the next couple of hours at least
  • Em83Em83
    Posts: 97
    Tiredness really does make everything so much harder as well. I do not have much advice I am afraid as I have a serial non-sleeper/can't sleep until late and wakes up early myself but I can empathise. Makes it so hard to get through the day. Hang in there.
  • It's made even worse because I'm almost asleep on my feet all day and desperate to get to bed, but by the time she finally goes to sleep I'm so wound up and stressed I can't sleep. I mean I know I oughtn't to be on my phone but I'm hoping getting it off my chest might help.
  • Em83Em83
    Posts: 97
    Getting it off your chest might help you relax that little bit I use my phone to read at night to help me switch off! I hope you manage to get some sleep tonight.
  • Thanks Em83; I got about 2 hours in the end so work was a bit of a blur! People kept saying I looked like the undead which was nice. Certainly felt like it.
    I spoke to a the SEN lawyer at Notts Trent this afternoon and he says he can definitely help us. He's putting together a team and has given me a number of a legal aid SEN lawyer who might be able to help. He also said it was all pro bono and if he can he'll represent us at any tribunal. Feels like we're fighting back!
  • June67
    Posts: 851
    Glad it went well and you survived work despite lack of sleep. I understand how much of a killer that is; neither of mine have been great sleepers although eldest is much better now the teenage hormones have kicked in, getting him up sometimes is now tricky. Youngest still a pretty poor sleeper but now he's getting older once he's off he will often stay asleep for a few hours it's just that going to sleep at 2 or 3 am and getting up at 4.30 to do his homework kills me. It has to be so early as he now takes a couple of hours or longer to come round. During this school holiday he has shifted to going off to sleep later but then waking later. He has also slept through most nights; unlike me as the sofa I'm currently on to help him get over his anxiety of being alone doesn't exactly cater for my 'ample' proportions. Hoping to finally get his room replastered in a few weeks then I can paint it and buy a spare bed to put in there. Then of course we will have to persuade him to use the room again. Small steps.
    Seriously though look after yourself and obviously sleep when you can/ she lets you. I can completely sympathise with the exhaustion and frustration of being woken frequently (ok non stop) by a child who doesn't appear to need sleep my son is often the same. Then of course on the few occasions when he does sleep well my husband has to work late and stomps around until the early hours trying to be quiet or the neighbours teenagers have a party!
    Just thinking about the melatonin etc it could be that the dosage might need to change if she has had a growth spurt or other changes that might impact the way her body uses the medication. It can't hurt to ask doctor for advice after all you need sleep to function calmly and so does she. Thinking of you as I watch the junk Christmas movie channel with the sound turned down while I wait for him to start snoring and distract myself from the frustration and exhaustion and stress caused by trying to get him into pyjamas and into 'bed'. You are not the only one.
  • Em83Em83
    Posts: 97
    Keep fighting Happytheman! It is good news that you can get legal help as well! never give up. June67 makes a good suggestion about the melatonin it can stop working. It works for my son most of the time but he can fight it when he is determined too now and the more anxious he is the less sleep everyone gets!!!
  • The melatonin problem is something we've hit a bit of a wall with. Any dose up to 7.5ml either will or won't make her sleepy; anything over sends her climbing the walls barmy. And she's refused her Strattera for the past 2 nights which is worrying. But then again she's done the most amazing things. We went to Morrison's today. I asked her to get a pack of bread rolls which she did, and that was fantastic. But then, without thinking i said "no, change of plan, put those back and get me those ones please" and she did!!! Apart from anything else, it was a very vague request, but she carried it out anyway. It was so hard not to praise her, which she hates, but I was so proud of her.
  • I may have secured some funding for independent reports. SOS/SEN are going to try and get Parents In Need to help not sure it'll come off but if it does it'll be brilliant. Just browbeating people into helping us really!
  • Em83Em83
    Posts: 97
    That is such good news! I hope it you get the funding!
  • webbwebb
    Posts: 2,593
    Hi SOS!SEN and Parents In Need are great charities (PIP only provide support in the South of England)

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