Marion
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Posts posted by Marion
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Bit late for jaded but might help someone else- Cerebra do grants for trampolines and our kids qualify, it's not means tested.
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Thanks Sally, you are so right it is a full time job isn't it! So sorry about your course, it's so frustrating cos I want to work and can earn quite a lot if I can get there but can't say from one day to the next if DS will be able to go to school. Have taken on board your advice and am goin to get everything in writing from now on, they are going to do a reding and writing test with him so as soon as they have the results we're going in armed with all the information to press for an Assessment of needs. Think I might write to Richard Branson and tell him about all our untapped talent, he might give us all a job on our laptops from home......just ave to tell im we can't do phonin, can't tie up the phone...lol!!
Am gonna stop sobbin an bein depressed and pathetic now, gotta get more positive and get on with it, if we cant fight for them who will? Thanks to all and had everyone has a good day x
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Just wanted to add how sad I am that you have been left in this situation.And I totally agree with the advice given.
Unfortunately support means MONEY being allocated to support your son. That just does not happen without something that states what he needs ie. in a Statement.
I too was also told that my son could get everything he needed without a Statement. Two years later I realised that wasn't going to happen, so I requested an assessment towards a Statement. The LEA agreed to that and then tried to put together a totally unenforceable Statement that added up to nothing. So we went to tribunal and we got everything we asked for in terms of hours of support; a dedicated TA and support throughout the day (lessons/breaktimes/dinnertimes); we got the school placement we wanted which had expertise in ASDs.
However this took me 2 years to realise I was being fobbed off and lied to, plus the time it took to be assessed for a Statement, plus the time it took to go to tribunal.
Your son has a right to be able to access education by law. The LEA are legally responsible for ensure your son has an educational environment that understands and supports him.
As previously stated, you cannot be expected to sit in the car park for the next 5 years. The school/SENCO/LEA and other professionals are not doing their job.
Start getting everything in writing. Everything you say, and everything they tell you and everything both sides agree to do. Your son has a medical diagnosis and difficulties that have been so severe that he has had to be taken out of school by you. He is vulnerable, and he is not coping.
Get advice from the organisations mentioned ie. NAS/IPSEA etc. Go to an NAS Special Educational Needs seminar about the Statementing process. Get a copy of the SEN Code of Practice. Get in touch with your local Parent Partnership. Ask for an assessment towards a Statement. That will mean all professionals should assess your son ie. Speech and Language Therapist, Educational Psychologist etc. School also have to make a report and so do parents.
What are you intending to do in the meantime? What have school said they will do as he is not coping presently? Get a letter from your GP about his anxiety/stress etc. Do you have anything in writing from his GP previously ie. the self harming etc?
They maybe hoping you will take him home and home school again. Don't let that be an option unless that is what you want. Home schooling should be a choice, not something a parent feels forced into because the School/LEA are not meeting your childs needs.
At the time my son was being diagnosed and was in school, I was actually on placement as part of my second year of a degree course when the XXXX hit the fan. I failed the placement, left the course, and spent the next couple of years getting my son in a school with the right level of support that he needed. It is only now that I feel confident that he is coping and I don't feel like dealing with the educational side of things is 'my full time job'.
So my advice would be to get angry, stand up to the system and learn how to navigate your way through the process to get a strong statement in place. Part of that might even mean a change in secondary school if the present one is not able to meet his needs. It isn't an easy process, but it can be done. But you have to get a statement and go by the SEN Code of Practice and believe nothing you are told unless you have it in writing in triplicate.
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Hi Marion.<'> <'> I wanted to post to offer some moral support.I have Ben who is 11 and has AS and dyspraxia.Ben has just started at secondary school.He has way above average intelligence and has a Statement of SEN.I do not think the school are doing what they comitted to.They also were very good at talking in earlier meetings but I do not currently see much support in practice.
However we do have the reasurance of the Statement if Ben does not cope.He is currently doing ok at school although he is very tired and irritable at home.I have found it very stressful dealing with transition.We have support from CAMHS but it is still difficult.I had considered doing a course or returning to work.However I don't think things are anywhere near settled enough to consider it.Just getting Ben up,organised and to school is enough of a challenge at the momment.
So I do understand how frustrated and disappointed you must feel.
As I said Ben is very bright but we have been able to obtain support.If a child had a visual impairment then the LA and school could not refuse to make appropriate adjustments in order to enable them to access education becuase they were bright.I don't think ASD,dyspraxia or dyslexia is any different.
Karen.
Thanks Karen, mornings are awful arent they, nobody understands unless they've been there, I am working one day a week at the moment and was supposed to start 3 days from 1st October, not goin to happen, feel sick cos we need the money and I might not get the chance again but what can u do? We have to put our kids first and as such are not "reliable" lol, hugs to you and Ben
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Just wanted to say thanks loads for all your advice, am waiting for the post after ringing yesterday to say that I had requested in writing (thanks Kathryn and Sally) the minutes of both our meetings last week and also their written proposals of what they plan to do to support ds. He has managed a few lessons each day this week so far,had phone calls yesterday from Head of Year, Head of learning support and the drama teacher!! Apparently they are going to do a reading and writing assessment with him and will then discuss with us how they cxan support him.
Alexsmum, I am so sorry your boy has had to go through so much and send him huge cuddles, if I can help with websites , free resources etc pleas PM me,it's hard having them at home but I can honestly say my ds was never happier, it worries me loads that his self-esteem and mental health will start to go downhill again now that school has re-entered the equation but feel we've got to try/
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Hello Marion, I completely feel for you and your son-secondary school can be harder. Have you anyone to support you such as parent partnership or autism team etc? Could you explain a bit more about the problems your son is having in school and what if any support he is getting? (has he any support in lessons, timeout card, laptop to help with writing/spelling etc etc).My son's first RSA was turned down because the sencondary school he was in hadn't put enough support in place(the LA phoned me to say if I waited it would be sorted-and it was)-thats the problem you may have, but the good thing about it for us was the LA had a meeting with the school and told them what they needed to do and then 6mths later they put in the RSA again with support from everyone involved and my son got a statement with 22hrs-my parental advice really supported it (so I was told).
How did you get on in the meeting?
What targets has your son got in his IEP?
Sorry there is so many questions but it will help us to try and help you!!
Hi again, thanks for the support, it's a bit lonely sometimes isnt it!! Been sitting in the school car park all day, ds very stressed and anxious, he managed 2 lessons today!
At the moment he has no support at all, the new school said he would be able to share another boy's support in English , Maths and Science-and then didn't put them in the same classes. He doesnt have any support in lessons at all.We have no IEP as yet.
The meeting was really unproffessional, with all involved (Year Group leader, Head of Standards and Head of Learning Support (ha ha) being very defensive and one of them actually said "What do you want us to do, we have 1600 pupils-this is a mainstream school"
Am angry and upset that his first week has been so difficult because school have basically not supported him at all, he now hates it and says he can't do it which could have been avoided with just a little bit of help to settle in. He says he doesnt understand what most of the teachers are talking about,he did a drama class today but his group didnt include him, he didnt have a part and sat on the bench watching.Going to keep trying to get him in and hanging around in case he needs me.Have asked school to write to us with the minutes of our 2 meetings with them detailing our dissappointment with the lack of (promised) support and to tell us how they plan to support him from now on, (that was last Wenesday, nothing yet)
LEAs apparently have different criteria and DS doesnt have a statement as his IQ is in the normal range! Thanks again, Maz
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Good luck with the meeting, Marion. Sorry to hear your son hasn't had a good start. What, if anything, has been done to prepare him, and what support, if any has been put in place?Secondary is a very different environment from primary, and your son has come from being home edded, so I expect he would need a lot of help to ease back into school anyway. I expect the meeting will tell you a lot about the school's attitude and ability to help your son.
Unfortunately without a statement, as you know, you are reliant on the school's resources and goodwill to support your son. Don't let the first failure put you off applying for a statutory assessment again: you are now in a different situation and have evidence of your son's failure to cope at primary school.
K x
Thanks for the advice Kathryn, you were absolutely right about the school's attitude, unfortunately it wasn't good. The learning support people had assured ud that "they would do everything possible" to help him in the first week, they did nothing they said they would and at the meeting actually rolled out the line "without a statement...." This is completely the opposite to what they promised us in the meetings we had before he started. He's upstairs now sobbing that he "can't cope" Can't believe it, was supposed to go back to work 1st October, we had such high hopes (after being promised so much) and now are so disappointd.take care and thanks
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Hi all, got a meeting ar DS new secondary school today, he started last Wednesday after being home educated for 12 months as he couldn't cope at primary, he has Asperger's, dyspraxia and severe dyslexia. We were so hopeful that he would cope at secondary school but it has been a disaster so far, he says he has a headache constantly and can't cope with the noise and the shouting, whistling, the bell ringing etc. He also thinks everyone in his form hates him and thinks he'e "weird"
Don't know if anyone can give me some advice-on the one hand I think he needs to get used to it, but in my heart I dont think he will, the year before I took him out of primary was a nightmare of crying, self harming, not sleeping etc, dont want to go through all that again if the end result is that school is just not viable for him.Just wondered if anyone else has gone through anything similar and what the outcome was? Our LEA is a nightmare, he doesn't have a statement, (we went as far as tribunal and lost)
Thanks for listening
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Been researching this for a while now, if you type "mercury toxicity" in on "you tube" the results are amazing, apparently mercury is in the vaccine mixers , Franch troops (allegedly) were the only ones who didnt get gulf war syndrome and the only ones who didn't have a certain vaccine? Gonna keep looking into this one.
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Hi Dharma, so sorry to hear about your wife, she maybe wants to see if you care enough to make the effort yourself to help the relationship (I'm sure you do but it might help to try to show her?)
I know there's a lady on here called Delyth who I think has set up a group for partners, Relate sounds like a great idea, it may be you could have couples counselling with someones who knows about ASD>There's a book "Aspergers in love" again dont know a lot and havent read it yet but might help, I think its different couples telling their stories.
Hope things improve
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We're in much the same position, had no choice but to take DS out of school it was really damaging his mental health in the end, but yes we r very skint now having basically lost my wage. On the plus side DS loads happier and we're enjoying learning together.Some of the things I found out in the last couple of months
Carers Allowance-if your child gets DLA at middle or highe rate and you earn less than �95 a week you can get carers all, its about �50 a week.
Family fund-you can apply for a grant for all sorts of things if you're on a low income.
Cerebra will pay for specialist computers, trampolines, bikes etc.
Am looking into working at night, maybe puttin the mortgage onto interest only, tax credits-there's something about 3k per annam if you're child gets DLA??
This is just my findings so might not all be correct, it's worth doing some research locally, somebody came out to the house and filled our DLA form in for us, can't remember where she came from.
There's loads of free stuff on the internet you can access for learning at home as well.PM me if you want to chat, good luck.
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Hi, don't know if this will help but DS was havin problems with his vision, had an eye test "normal" but I knew it wasn't. Someone told me about Ian Jordan, he has a research facility in Cambridge and a practice in Ayr in Scotland,we went to see him on Saturday, he was quite amazing really. Ian asked DS to look at his nose and tell him how much he could see- he said "your nose and a bit of one of your eyes" I was amazed, Ian has state of the art equipment, gave DS green lenses-he could see so much more-DS said the difference was massive.
I know they're also doin research at Caledonian University in Glasgow, dont know where u live but google Ian Jordan-someone nominated him as a hero on the NAS site-might help x
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Ahh that makes sense! Have made an appointment and we're looking forward to seeing you, best wishes,Maz
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Hi Science, thanks for that, there seems to be two Ian Jordan's, do you mind me asking did you see the one in Ayr in Scotland or the one in Cambridge? Best wishes, Maz
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Hi, wonder if anyone has any experience with visual dyslexia/Ian Jordan or Irlen Lenses?
DS is11 has Asperger's Syndrome, dyspraxia and severe dyslexia (the report said as present in only 1% of the population)
He has been having problems with headaches and gets upset if in big rooms with plain white walls, he says he sees spots and sparks and that these are there all the time but worse in light coloured rooms -he never mentioned it in the past as he presumed everyone saw them! He also sometimes sees bubbles like from a lava lamp and occassionally feels a wall is moving towards him.
We went to Specsavers for an eye test yesterday and they said his sight was fine (10 mins?)
Going to find out if it's worth him seeing a different optician, just wondered if anyone had been to one of these clinics? best wishes,Maz
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Hi, didn't know whether to reply or not as don't want to influence your decision!
Just wanted to say I really feel for you, have been in the same situation and to be honest I let it go on far too long , ds is 11 and we tried flexi-schooling (in my opinion complete waste of time) and finally withdrew him in December.
I think there are some of our kids for whom school is never going to work, ds changed boy, happier than he's been for a long time, just knowing on a Sunday night that I don't need to worry about what he'll be like in the morning makes such a difference. We've started to meet up with other home educated families and are looking forward to getting to know more.
In our case ds was desperate to go to school to be a part of it but couldn't cope. Follow your heart, will be thinking of you, Maz
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Hiya, been to Disneyland Paris with our son a few times now, if you contact them by e-mail they have a brochure about disabled access they can send you. If you dont buy your tickets until you get there, go to guest services to buy them and one carer gets a free ticket-saved us 90 euros on a 2 day hopper. You need to take your DLA letter and a letter from the doctor dated within the last 6 months- just saying he has autism would find queing difficult. You get passes to go in the exit of the rides and you dont have to Q. We found Sequioa Lodge best-its near enough to get back quick if he's had enough-we e-mailed them before we went and when we got there they upgraded us to a suite-worth a try!Have a great time,Maz
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Thanks all for your kind words, Karen you made me cry!! in a nice way, you're right the relief is huge, take care everybody and hava a lovely Christmasl, Marion
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Hi all, just an update and wanted to thank everyone for their support whilst my ds was going through hell tryin to attend a mainstream primary school with no support. We've fought and fought, gone to tribunal-I even wrote to Ed Balls -he passed the letter to someone else to answer.
I was signed off work with stress , ds a wreck, his attendance was down to 50%. Headmaster says he wont be able to cope with secondary school-but wont go against the LEA to get him a statement..
Anyway, Thursday was a nightmare-" I cant do it mummy, its too hard.." lots of tears and then I thought what am I doing to my child? Sent the letter off Friday to de-register him and within days I'm living with a different child. I realise that home education isnt for everyone but if that's what's right for ds then that's wots gonna happen. Brave words, anybody got a caravan for when my house gets re-possessed?
Thanks again to everyone who supported me, have a lovely Christmas, Marion
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Hi,dont know if it helps but DS exactly the same, we use clippers when he's asleep on the sofa, then turn him over!!
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Hi Jewel and welcome, I'mm still quite new and wish I'd found the forum earlier, my lad is 10 dx when he was 8. I think its great that u have older kids, mines an only child and very lonely,Marion x
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Loulou, still quite new here but wanted to say how much I feel for you, can tell that Kai is your absolute first priority it must be so hard to do what u know is right, thinking of you,
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Dont know if it helps, I've asked my son who is 11 in November, none of the kids in his class (Yr 6) are allowed it but apparently the one they all want is Simpsons "Hit and RUN" he says its like GTA but less violent.Marion
Aspergers Teenager
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Hi Bruce and welcome, lovely to hear from you, my son is 12 but already 5ft 7 with size 10 feet, he has Asperger's. Great to hear that you're going to Uni, hope my boy can too, well done you! Marion