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Hi, Mina.

 

I have asked a team member to merge this thread with your existing one so that people who read this for the 1st time can see what the background is, it's easier to follow that way, think of it as your own diary. ;-)

 

I'm really not sure what to suggest... :-( I mean, what do you do when the very system which is supposed to protect our children fails them in such a spectacular manner?

 

I have just re-read your thread now, and I have realised that with all the other issues, one question which has never been asked is: "are your kids statemented?". It reads to me as if they're only on School Action/School Action+.

 

If I am right, then it is imperative that you get the ball rolling ASAP on a Statutory Assessment to lead to a SoN (Statement of Special Educational Needs, to give its full name). The school usually initiates those, but if they are uncooperative, you can do it yourself. Go to the IPSEA site for templates. Better discuss with the school SENCO first, it will be easier if you have their support, although from what you say, that doesn't sound terribly likely.

 

I think that the person who told you your daughter may be on the spectrum may well have hit it on the nail... Since autism is genetic, it would hardly been surprising, although girls are less subject to it (7 to 1 proportion). But I digress. Whether her behaviour is down to autism spectrum or whether she's acting out, she needs help too, but it will differ depending on what causes the beahaviours. :-(

 

Have you spoken to Social Services recently? I know I am not their greatest fan, but if they are already aware of your situation and were sympathetic, maybe you could see if they can push things along with CAHMS?

 

Other than that, I am stumped. All I can suggest is go back to your GP and hound him until he pushes things for you, I am sure there's got to be some way for CAHMS to give you an emergency appointment.

 

Just a thought, I know you said there are no ASD paedistricians in the area, but that doesn't mean you shouldn't accept to see a regular one, simply because they will have had some training in ASDs and then they might be able to point you in the right direction. It's got to be worth a shot anyway. ;-)

 

Keep us updated and keep strong. :-)

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Laffin Bookie this is the mind numbing thing neither of my kids are on school action/plus, both have external involvment, Miss boring used to have an IEP and SA+ until the move to warwickshire. EP, and occ health,

 

R is doing CAF, Camhs, has a consultant pead for other illness, orthapedic consultant, Occ health, and anger management

 

Not seen S/S again since that one visit , Honestly no one will lift a finger for either of them until they hurt either themselves or someone else

 

I am banging my head against brick walls and getting nowhere fast, Have been told that their behaviour is not overly concerning, how is almost glassing another child not concerning??

 

I need to write a letter outlining my concerns about this and was hoping you would be able to help me?

 

Mina

Edited by mina2974
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Sweetie, this sounds terrible. i can only re-emphasis what Bookie has said about starting the statementing process yourself.

 

Also, I would call NAS for some advice - they can tell you who is qualified to diagnose ASD in your area.

 

Have you called CAMHS and said this is a crisis? they may be able to get an appointment quicker if you do.

All help is merely my opinion only - please seek legal advice if you need to as I am only qualified in SEN law.

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The year long wait is for the crisis list :mad:, S/S did put kids down as being in need but not much good if that's it, nas say the nearest person is in Banbury but only takes referrals and gp can't refer out of area, do you see why I am going nut's lol

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I need to write a letter outlining my concerns about this and was hoping you would be able to help me?
Of course. :-)

 

Just write it down and I'll shape it for you. Only thing is I am at tribunal tomorrow, out for Valentine's day on Saturday, leaving for Venice in 1 week and still not finished the costumes :shock: so I am not on here as much as usual, but that shouldn't be too much of a problem, it doesn't usually take me that long to knock a letter together, but I might not respond instantly is what I am trying to say. :-D

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GP can indeed refer out of area since April 2008 - your GP will be aware of this. I would suggest going to your GP and explain everything (cry if you can - it sounds awful, but they need to see how much distress this is causing). (S)he may say this is not covered as it is a mental health issue - that's bowlarks, it is a paediatric issue, as far as you are concerned, and you need immediate help.

 

In terms of "crisis" waiting list being 12 months, if your GP requests it as urgent, they MUST act. There is a target of 13 weeks for an appointment - they have clearly failed this.

 

I'm afraid that you are going to have to be strong, pester and not take no for an answer. Pester CAMHS, your GP and social services and if you are not happy with the response from SENCO, make an appointment with the head as (s)he retain overall responsibility for the SEN provision in the school (refer to your SEN COP for more details and treat it as your bible).

 

At the end of the day honey, you will learn the hard way that you will need to fight every step of the way. It's demoralising and I ended up in a fearful state because of it - but you can do it and we will support you. But the first thing you have to learn is when people say no or there's a waiting list or he/she doesn't need it, cause (in a polite manner) as much of a fuss as possible and you will get somewhere.

 

Don't take no for an answer - your kids re very, very lucky to ahve a Mum such as you who will fight for them and cares this much. Take deep breaths and refuse to be browbeaten by the system.

 

Bookie will no doubt write you a fantastic letter but in the meantime badger everyone you can until they are so sick of you taht they give you some help.

All help is merely my opinion only - please seek legal advice if you need to as I am only qualified in SEN law.

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Hi all

 

have a houseful of grotty sick kids:eek: my poor head is pounding from it all lol

 

Have had an e-mail today from camhs to acknowlage complaint, so we shall see how that goes, R has been predicted level 5As for his sat's across the board :) am very proud.

 

Now onto Miss B, her teacher has assesed her as being capable of attaining a level 3c, which is a load of rubbish, it would put her on the same level as her younger sister Annie who is 8 but there is no way on earth that miss b is working at the same level as her!

 

her last lot of tests before the previous half term at the old school put her at a 2b, so either she has a brand new brain and has jumped up over 2 grade's in less than a term or someone is over estimating a touch.

 

I need to put into a letter that I never gave my consent for miss b to removed from the sen register and am very unhappy that she is no longer on an iep, I feel that since the move to warwickshire her confidece has plumeted and she is not acheiving as well as she could, her behaviour has deteriorated and she is losing all intrest in doing well at school, She has been referred to salt and OT and therefore should be on the sen register,

 

I also need to make it clear that I want R on the sen register, his exteranl involvement alone should require this, he has OT, Pead, Orthapedic consultant, anger Managment and cahms, also health issues that require staff to be informed for R's safty, Lazy eye- damage to his good eye could leave him blind also no binoculor vision, nephrotic syndrome - leaky kidneys - severe Flat feet - loose Joints in wrists

 

Is this enough info bookie??

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  • 2 weeks later...

Mina, I'm so sorry, Bookie asked me last week to do you a letter - unfortunately, hubby did his back in and so I've been running around after him.

 

External involvement unfortunately does not mean the school is legally required to put your son on the SEN register - however, they could be in breach of both the Education Act and the Disability Discrimination Act if his problems impact on his education and they do not address them.

 

here is the drafted letter - what do you think? :

 

Dear xxx

I am writing to you to express my concern that my child, xxx xxx, has been removed from the SEN register at XXX school without my knowledge or any discussion with myself. The Special Education Needs Code of Practice specifically states: “ parents’ views on the child’s progress should be sought and they should be consulted as part of the review process”.

I do not believe xxx has made sufficient progress at school to be removed from the SEN register and have seen no evidence of such improvement. As I am sure you are aware, the Special Education Needs Code of Practice states in section 2.10 “It is vitally important that schools welcome and encourage parents to participate from the outset and throughout their child’s educational career at the school”. I do not feel this participation has been sought, although I am very willing to participate and contribute at any level.

I feel that xxx is exhibiting low self-esteem and is losing interest in school. This is obviously of great concern and is something I feel needs to be quickly remedied to prevent disenfranchisement. As you aware, both SALT and OT are involved with xxx and I am requesting a multi-agency meeting as I feel this would be the way forward to ensure xxx’s needs are met.

I am also concerned about the provision in school made for R. Again, as you aware, there are various agencies involved with him and he has specific needs which means educational provision which is additional to, or otherwise different from, the educational provision made generally for children of his age needs to be made, as defined in the Education Act 1996. This alone should mean he is on the SEN register at school and the school should be looking at ways to assist him.

I am extremely concerned that these issues have arisen and do not seem to have been addressed satisfactorily. Therefore, I would request a review of my concerns at your earliest convenience and a meeting to discuss progression from this point.

Yours sincerely

Mina

All help is merely my opinion only - please seek legal advice if you need to as I am only qualified in SEN law.

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Hi Tiglet,

 

Im sorry I have not posted sooner but have had so much trouble in the last few weeks that my head is all over the place, you letter worked! Miss boring was given some test's today, they say that she is definatly dyslexic and also that she has dysphraxia, am a little stunned to be honest, have been telling schools for 5 years that something is not right:(, I have to wait for a written report from the school, the SenCo said he was not experienced with children like miss B and would need to call in outside agency's? Am not sure what that means though as he seem's to really know his stuff, am very confused right now and feeling lots of different emotions.

 

Have complained to camhs and and have been told that an appointment should be sent out for R shortly.

 

Big (((HUGS))) to you and bookie

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Hi

 

I just wanted to add a little update on R, if you remember he was physically restrained at his last school, Well R being the way he is did not tell anyone until this half term that his back has constantly hurt since the restraint,

He see's a pead for his kidney disorder who can also dx hyper mobility as its her specialist field, I don't really understand much about it to be honest, but she says his hyper mobility is very bad, anyway it seems there is something wrong with his back and he now needs to have physio, R says the pain only started after the restraint, he is still very scared to be himself outside the home as he is convinced that the next time he could have his spine snapped.

Am trying to arrange councelling for him, think it will need to be private as all the so called professinals refuse to discuss any of it with him or with me.

 

Mina xxx

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Oh sweetie - this is just getting worse and worse. Where to begin?

 

Miss B - OK, she has a diagnosis of dyslexia and dyspraxia. It sounds as if they will be calling in the specialist teaching service - this is all to the good. Let us know what the report states from the SENCO. Also, ask her to write in the report whether they feel they can meet Miss B's needs or not - if they say not, you can request a statutory assessment.

 

R - Let's start with his newly developed agoraphobia - this is a common symptom of extreme anxiety. I seem to recall your GP has not been too helpful - time to go over his/her head and speak to his paediatrician. This is serious and can develop into full blown agoraphobia and she should be able to help you access help for him quickly - perhaps speaking to the consultant psychiatrist on your behalf. If you really find you are not getting anywhere, try Warwickshire PALS for advice:

 

Freephone: 0845 423 8903

Email: pals@warkpct.nhs.uk

 

In terms of his back, R may feel this is when it happened, but you would need clear medical evidence before you could proceed further against the school. When R sees the physio, explain (preferably out of his earshot - maybe a phone call to her a day or two before his first appointment) what happened and she may be able to say what has caused the injury. Also, she may be able to reassure R that his spine will not snap and reduce his anxiety and agoraphobia.

 

I think this needs to be dealt with quickly as agoraphobia can very easily become worse and worse. So, get phoning today - you should at least be able to leave a message with his paediatrician's secretary.

 

Now, how are you doing? This must be very stressful for you and I'm concerned that maybe you're not getting the help/support you need. You do need to make some time for yourself or you will lose the strength to fight for your kids.

All help is merely my opinion only - please seek legal advice if you need to as I am only qualified in SEN law.

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Hi Tig's

 

Am a little sad atm, its been 5 years of saying something is not right with miss B and now the dx is here, I suppose its real now, if anyone can recommend any good books on dysphraxia I would appreciate it!

 

Am starting councelling on the 17th as I felt that it would help me get things into perspective.

 

The school lost my son for almost two hours yesterday which im not amused about, he managed to leave the premesis despite them having security gates, belive it or not his anger management lady told him to "walk away from his anger" well he got angry with the school and did what she said, grrr he was wandering the streets and got lost!

Miss B has to go to camhs as well as some of her behaviour does not fit in with her dx and is more ASD but was half expecting this.

 

Thanks and a big (((HUG))) to you and Bookie for helping me

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  • 1 month later...

:shock:Hi

 

Have been rubbish on keeping things updated recently but my mind has been mush with all the cra* I have been dealing with.

 

firstly on Monday we went to family therapy, we found out someone ( no prize's for guessing) had told camhs that my ex had sexually abused kids, a lie by the way and that is why the psychologist had sent us to family therapy,

 

Well by Lunch time they had got us to do a family task, they went off to video it and came back saying that they had never seen a family do the task so quickly, apparently it took us under five Min's and the usual time is about 15:) .

 

Well all going well, until just before lunch, when they separate us all, my heart is literally in my shoes with panic, as I am waiting for them to tell me what a rubbish mum I am, ummm next bit has me floored, the psych says , look we don't know why your here, its a waste of a very expensive resource as your a fantastic, close family, your son has asperger syndrome and we Will be giving him a formal dx today:shock:, He said we would go thought he disco assessment in a quarter of the time they normally take as their observation of R had already led them to the conclusion that he was defiantly ASD.

They then called the rest of the team in and told us Miss boring needs assessment as well as they feel she is also ASD.

 

On Thursday there was another CAF meeting, where they spent hours asking me if the family therapy team had the right to dx, I also found out that the evil old school broke procedure by referring us to social service's as while a CAF was ongoing.

 

A letter of complaint is winging its way to join the ongoing complaint, which by the way is now being looked at by OFSTED.

So you guys were right R does have Asperger and so does Miss Boring ( still to go through assesment but they made their feelings clear ).

 

Will let you all know how things go with the official complaint, thank you for all that you have done for me and my family:-D

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Well, you know what Mina, it sounds as if it was harrowing, but you have got a result.

 

Let me know if you want help drafting any complaints - I believe as well as OFSTED, you need to complain to LEA, chair of the board of governors and the Chief Education Officer - if not, I feel you at least need to write a letter to them telling them about the complaint and send them a copy of any correspondence with OFSTED.

 

I think you should also invoke the school complaints procedure about evil witch-bag at school.

 

It's amazing how vindictive the school can be when they are challeneged - school told son's CAMHS nurse that they thought he was underweight - needless to say, he eats like a horse and whilst skinny, is within the normal BMI range.

 

Let me know what (if any) help you require and I'll be glad, GLAD, to help.

All help is merely my opinion only - please seek legal advice if you need to as I am only qualified in SEN law.

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The complaint with the evil old school went through the governors and I now I just cc all letters of complaint to the LA and MP and leave them to it,

The CAF co-coordinator is rather unhappy at the fact that she has been so mis-lead (haha) so another pair of eyes on the old school,

Next step is to send in a dpa request to camhs to find out who exactly gave them the mis-leading information, once I have positive proof I will decide what the next step should be;),

the local grapevine tells me that the staff at the school are a little jumpy and I am hoping that I am the reason for this, the more eye's on them the better, maybe someone else's child will be saved from what mine went through.

 

I get the impression that I am making some impact as new school is very careful not to offend me and are providing support by the rule book, within a week of dx they have agreed to call in outreach and EP, virtually unheard of in this area,

 

My approach is still a little bull in a china shop but its having the desired effect at the moment, even if nothing major is done , I have the feeling the evil old school are being forced to review some policy's.

 

The positive side affects are that camhs sped up R's dx, ( well OK I did kinda complain to the chief executive) gave advice for miss Boring who also now has a dx for dyslexia and dyspraxia and both kids are getting the support they should of had all along, May not have much time on CAG these days due to R's suicidal behavior but the spirit is very much with me.

 

Thank you for the offer of help Tigs:), my weak point is letter writing and it's good to know that I am not on my own.

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Mina, sorry I haven't been posting on your thread for a bit, I have kept an eye on it to see if there were any updates, and yaye! here it is!

 

Well done on the dx. It may sound strange to say so, but now you know: It's not you being a bad parent, it's not you being too soft/overprotective on your child, it's not him being a bad boy: it's AS and his behaviour is about as to be expected as a child in a wheelchair not be able to climb stairs. What a relief it is to be able to put your finger on it, hey?

 

Sure, there'll be time for mourning for the person you hoped he would become and never will be, and that's natural too. But onwards an upwards, you know what you're looking at now, and with that dx you can now take if full on.

 

Same for your DD, with the right dx you can get her the help she needs and deserves.

 

It's a journey, that's for sure, but it's one a few of us on here are taking.

 

What I want to say to you as well is that with the right support, the right environment, there's no reason why your hildren can not be the amazing kids they are meant to be.

 

My son is cute, sensitive, intelligent, gentle and immensely caring towards the more vulnerable. But sometimes, you can't see that, because he's also a troubled young person and his AS sometimes masks the true him. My role as his mum, the way I see it, is to help the real him to shine through the veil of his autism, and if we get days where that happens more than not, then I am doing well. Yes, he will always be autistic, but it's not the end of the world, just the end of one world we had imagined, but the beginning of a new world with different goals, different riches, different perceptions. :-)

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  • 2 weeks later...

Thank you Bookie,

 

I love the way you feel about your son, I feel the same about mine, what the world sees is not who he really is, inside that awkward, painfully shy little boy is a funny wonderful child, After his dx he said " All my life I thought I was bad and now I know that I am not, I have Asperger"

 

Not one suicide attempt since the dx! Have had a time of mourning and regret for all the mistakes i have made and the future he will not have, but am ready to face anything life throws at us.

 

Now to start the whole process all over again with Miss Boring lol, do they really think that I will allow her to sit on a waiting list for 2 years? I think not!

 

Planet Mouret -- Episode Two -- "Interaction" wanted to share this with you , a wonderful Friend of mine has had the first in the series put on the nas website and the first scenario may seem a little familiar to those that have read my thread!!!

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  • 1 month later...

HI

 

sorry for not being around much, am still renovating house and am going through hell with the schools,

 

Point blank refusal to accept that R has any asd traits, am biding my time to see how he goes at senior school but have a feeling I may need to have a scrap with them.

 

Major issues with miss boring that are now at a stage where I need help and advice on how to go to war.

 

I have been informed by school that miss boring will not be put on sen register until she has been seen by ep and learning support, ok so what right? hmmm except two months later when I asked what was going on I am informed that the waiting list to see these monkeys is two years long!

 

Action plan so far is request for school records, request for statutory assessment and also a private ep appointment which will formalize dyspraxia dx, have also seen a private OT who has said in report about dyspraxia and also autistic traits observed, very high level of anxiety,

 

I need help urgently as this situation can't continue, my sunshine miss boring is changing and its not a good change, she is angry and humiliated, the support they give involves her playing board games like monopoly, she says shes too stupid to teach.

 

I am waiting to hear about a loan so I can pursue private salt and private ASD dx ( waiting list for camhs to dx is also two years, was so lucky with R )

 

Aaahhgghhh im going insane with all this, am also having to appeal for dla for her as school says she's perfectly fine, no care needs with 3 disorders:mad:, Need to go to war and could use some help, don't want to play this softly and don't care about relationship with school , I'm so angry at the moment so here I am asking for some hand holding and advice again.

 

Mina

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  • 2 weeks later...

Hi

 

I have now got a report from a consultant EP ( private ) which states that Miss b is spelling at the level of a 6 year old and reading at the level of an eight year old, she is 10 years and 8mnths at the time of testing. The report also confirms dygraphia and Asperger as well as indicating traits of Adhd, I have a salt report that confirms anxiety and literal interpretation of language, an OT report that confirms dyspraxia and autistic traits were observed as well as sensory issues and hyper mobility, I have a report from clinical psychologist that also confirms Asperger and traits of Adhd , I also have a school questionnaire filled in by the school that clearly states the school feel she has average ability for her age in all areas:mad:, I am hoping to use this as evidence that the school have failed to recognize her issues, she still gets no support, I sent in a request for an assessment, The head of EP dept offered to bump another child off the two year waiting list and see miss b instead, Its an offer I think I will refuse:eek:,

 

Can anyone advise what other information that I will need to provide to pursue a statement?

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Hi

have read your thread with interest & sadly deja!!

 

Firstly have u requested an assessment under the 1996 educational act?

 

If you have the LEA have 8 weeks whether or not to confirm if they will start or not start the statementing process. If after 8 weeks they decide they will not assess you have the right to appeal to SENIST but beware this process will cost.

 

In all the process should take 26 weeks in total until a statement is issued.

 

You start to tell them, you define the time-lines. Make sure you document EVERYTHING calls conversations letters etc this is your evidence & you will need everything.

 

Start to keep a dairy so you can show clearly what has been happening & what you have done to remedy the situation regarding your children.

 

With regards to the SS whom I have no faith in what so ever be very careful what you say at ALL times. Only see them with someone present & again document everything because they do and it won't be to your advantage.

 

A child is not just called a 'Child in Need'. Whilst a child who has a disability is a child in need, under the Children Act 1989 an assessment must be carried out documenting his/her needs. If you are not happy with the outcome of the assessment DO NOT sign it.

 

I'm sorry to come across in this manner but the situation my family has been place in I would not wish upon my own worst enemy!!!

 

Just be very careful when speaking to any of these agencies after all what you are asking them for in effect is money & what your children need is very very expensive!!

 

It cost to assess, it cost to DX, it cost to educate, but the overall cost is the right to a life and to be given the opportunities to achieve.

 

Best of luck & don't loose site of what you are trying to achieve.

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Mina, I've been in hospital so haven't been around - you need to request a statutory assessment asap and the LEA have 6 weeks to respond to you to tell you whether they will assess or not..

 

I don't really want to answer too much at the moment as on very heavy pain relief, antibiotics and steroids, but if you can hang on until the middle/end of next week, i'll help you put one together.

All help is merely my opinion only - please seek legal advice if you need to as I am only qualified in SEN law.

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Sorry I stand corrected thank you Tiglet .

 

Anyway the timescale are as followed just to let you know roughly the entire process;

 

The SEN code allows 26 weeks for the statementing process.

LEA to consider request: 6 weeks

Assessment and decision on statement: 10 weeks

Drafting the proposed statement: 2 weeks

Finalising of statement: 8 weeks.

 

 

Hope that helps.

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  • 3 weeks later...

Hi

R has been in hospital with another flare up of his kidney disorder, but have kept the pressure up on the LA, 2 weeks left until i find out if they will do statutory assesment, the school have put miss b on school action plus but still refuse to give me any idea of what support if any is in place for her. No IEP and no support???

 

Have got in touch with the head of the statmenting dept who is not at all happy at how I am being treated and am using the last of my savings to hire a solicitor to send a threat-o-gram to them.

Im so tired of being lied to every time i think that I am getting somewhere i get knocked back again, am reading the sen code over and over as I am fairly sure that I will have to go sendist. The head of the statmenting dept verbaly told me that he feels that the request to assess will be accepted but we all know what their word is worth:mad:

On a good note I have rubbished their 2 year waiting lists with a few well chosen words and miss b has seen both ep and learning support .

Just to add to fun got a dla tribunal soon, nice twit from dla kindly informed me that asperger does not affect day to day life grrrrrr.

 

Huge (((HUGS))) to everyone, hope you feel better soon Tigs

 

Mina xxx

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Can anyone advise how i can protect my self from prosecution and withdraw miss b from school until support is offered

 

My reasons for doing so are physical and racial abuse on a daily basis, to include being attacked by a group of 7 girls, spat on, called retard and racial insults, clumps of hair missing out of her head and then thrown at her, kicking and punching.

 

NO support at all, on school action plus but no iep or care plan, still waiting to hear if they will statment but in the mean time she is bed wetting and being aggressive at home due to the stress she is under .

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