your thoughts welcome, please.

[mum23]

Ok big question it might take a while to explain problem.

I have 3 children a 16 year old daughter with probable mild AS, twin 13 year old boys 1 with AS, the other with some ASD traits, all 3 of my kids also have other genetic conditions that affect their joints and internal stuff, and a their autonomic nervouse system. Due to these conditions it has meant that my kids have had quite a lot of time off school over the years due to on going medical problems.

 

It took a long time to get my AS son diagnosed with AS, about six years all in all, I now beleive this has much to do with a letter from the head of my son's old school (primary) written to my son's paed. Head writes,

" is it that mrs..... a very anxious and over protective mother or is it that she receives a great deal attention when the boys are ill?"

Anyway she goes on to write some very daming stuff, that is quite horrid, well this was sent to the paed. whom wrote back to the school to say," I think it is very importent for all of the agencies working with...... to keep a meticulous record of any concerns, so if needs be a full chronology can be established." and thus is on son's medical records and it was in his school file (which I have just got a copy of as he is in proccess of having an SA).

I believe due to this headteachers stuborness my son well son's have been victomised(sp) as AS son had no transition support to secondary school no support at all at school, even after paed. had written to head explaining my sons complex needs, infact primary school told secondary school my son had a completly diffirent condition!! Still to this day the secondery school treat me as if I am nuts! and i am sure it is to do with this letter and probably a lot more like that one. Now in year 8 the medical team that work with my son have got very cross with the school and are helping me push for a statment.

My problem is I am very cross with this head of old school and beleive she needs to be given a sturn talking to by a higher being, but is it wise for me to take this further?

I would be gratefull of your views.

Anna

[Enid]

So many of us have been there, our kids labled as naughty, us as over protective, I found it particularly hard as I worked at the school! I would love to meet up with the head now, she since left due to stress as she made it soo hard for me to get help as her concern was getting a statement to pay for a classroom assistant, not to help my son, if I knew then what I know now, especialy since joining this site, well knowledge is power, read posts on here, bide your time, then go for the jugular! Enid

[aro]

You could write to OFSTED, the school Govenors and the LEA if you think the school has dealt with your son's problems in an unsatisfactory manner. Make sure you have copies of all the correspondence you refer to first!

 

A x

[Cat]

" is it that mrs..... a very anxious and over protective mother or is it that she receives a great deal attention when the boys are ill?"

 

The above statement screams MSBP which has these days been re-labeled as 'fabricating illness. This statement is strongly implying that you like your children to be ill because when they are 'you' enjoy the attention. This is a slur on you much more than your children. I would not be happy with this at all because clearly 'you' are being perceived as the problem.

 

Anyway she goes on to write some very daming stuff, that is quite horrid, well this was sent to the paed. whom wrote back to the school to say," I think it is very importent for all of the agencies working with...... to keep a meticulous record of any concerns, so if needs be a full chronology can be established."

 

I am sitting here asking myself what could be more horrid than an accusation that you make up the fact that your children are ill so that you can get attention.

 

The response from the Pead is equally as worrying as what the HT wrote about you. They are saying that professionals need to keep a very close eye on you and to record any of their concerns, so that should they ever decide to act on their concerns, they have recorded lots of evidence against you.

 

It is not surprising that the school are treating you like you are nuts because that is the clear implication of what has been written about you.

 

What to do about this is difficult to call. I know that if I had ever had anything in writing about myself in the way that you do that I would be taking all of this to a solicitor. But it would have to be the right solicitor. There are some who help parents who have themselves been labeled. I would want this slur removed from my name. This is a really difficult situation because given what has been written about you of you decided to rock the boat within the system then this might well be seen as more evidence that you are seeking attention and be recorded about you adding to the problem.

 

I know that the NAS are aware that parents are more and more being seen as their children's problem and so they might be the people to contact and ask them how to proceed. You could sit back and wait this out and hope that your son does get the support that he needs. It is not an easy situation to be in. I have been in a similar situation having being told that I was an overanxious Mum and that I was the problem. It took me years to finally get the right diagnosis for my son because of this. Had I ever had anything in writing I would have acted.

 

Cat

Edited June 3, 2008 by Cat

[lynyona]

Been there, i even had an headteacher of the special school he attended( which also as a special Autistic unit) tell me when i aired my concerns when he was thirteen, he s fine he s just a teenager.So i waited another 3 years before persuing it untill dx at 18

[cmuir]

Hi

 

If the HT is now an exhead, and you did feel you wanted to discuss the contents of her appalling letter with her, then at least you'd know that your son's wouldn't suffer. Have to say I'd be inclined to express either face to face or by letter that her comments were neither helpful nor constructive and she's simply doesn't know you well enough to say (and isn't qualified) to say whether you're neurotic or not! I'd also point out that as the head of the school, she has a duty of care to the kids and that includes special needs provision as part of their inclusiion policy. A copy of the letter (and let her know) sent to HMI wouldn't go amiss either!

 

Best wishes.

 

Caroline.

[bid]

OK, please don't all jump on me, I'm just trying to look at other perspectives here

 

Obviously I don't know you, Mum23, or anything about your circumstances.

 

But if a professional has any concerns about a child, is it better that they stay quiet, or share those concerns with the other professionals involved?

 

I'm not for one minute saying the HT or the Paed. are right in this situation...as I said, I don't know you or anything about you, and I really do hope you can sort everything out

 

I'm running off to hide now!

 

Bid

[mum23]

Hi Guys,

Thanks for your input, I think I will have to have a think on this one.

 

 

 

OK, please don't all jump on me, I'm just trying to look at other perspectives here

 

Obviously I don't know you, Mum23, or anything about your circumstances.

 

But if a professional has any concerns about a child, is it better that they stay quiet, or share those concerns with the other professionals involved?

 

I'm not for one minute saying the HT or the Paed. are right in this situation...as I said, I don't know you or anything about you, and I really do hope you can sort everything out

 

I'm running off to hide now!

 

Bid

 

Hi Bid,

I will not jump on you!

I agree with what you say and believe it is important that teaching staff should inform the powers that be if they feel something is going on.

 

 

Though in this case the HT's actions were, I feel, in retaliation for me suggesting I could pay to bring someone into the school to give the staff a quick insight into ASD, the HT was very cross with my suggestion and went on about how they know all about ASD's they have had other ASD children at the school and so on. ( I might add here, that the 3 other ASD kids that went to this school were all removed from the school by their parents!) Anyway HT was not a happy bunny with my idea, then it transpiers that she wrote to the Paed. the very next day!

This letter issue was back in 2003 when son was given a tentative diagnosis of probable AS, my son was officialy diagnosed with AS in 2006 along with other medical conditions, but had been known to paed. since 2000 due to ongoing medical problems, I have only just got a copy of this letter from my sons school file, I was adviced to get a copy of his file as he is in the statmenting proccess.

After reading my son's school file I am sure the difficulties my son is having at secondery school are due to a very negative input about myself from old school to new one. The sort of things that stick out as odd to me are the fact that when on his induction evenig we find the tutor had absolutly NO idea son has AS and mobility probs, even after myself and paed. had written to S. school to explain situation, when I hand a note of issues to SENCO at a latter date she exclaims "oh not another letter ha ha"!

Latter my kids physiotherepist wrote to school to advice them that she thought is would be wise to supply my kids with laptop or scribe as their hand wrist shoulder and necks were becoming very unstable and to privent further detiration she felt it wise to implament some form of help. To this SENCO replies, "school has NO funds for this type of support sorry." Ok may be they do not have funds, but this is one of the biggest secondery schools in UK, so I wander. Then I and sons CAMHS OT ask for my son to be withdrawn from RE due to the anxiety it was causing him, son has morbid thoughts around death and mortality issues, school say this would be NOT be possible as they do not have staff to look after him when he is not in RE. The list goes on and on, any way back to my concerns here, what will it take for this school to take on board that I am not a bad, mad mum?

Do I bring up this whole letter issue with someone in authority or should I just get on with it?!

Thanks for listning.

Anna

[bid]

Hi Bid,

I will not jump on you!

 

Phew!

 

Bid

[cmuir]

Hi

 

I think you are well within your rights to raise concerns that concern your children.

 

From experience, I've found if you don't ask you don't get, if your quiet and say nothing, not much happens (of course not all professionals are like that). An example: I love my son dearly (he's 6 and has AS). He's very challenging and he keeps me on my toes. When he started school it wasn't a great start. R was abusive, throwing things, disruptive, and was generally very aggressive towards any adult that spoke to him. I was frogmarched into the HTs office during his first hour, not even first full day when I was effectively told that staff weren't equipped to deal with "a child like that" and that he'd effectively be suspended. I was incredibly upset that day, but the next day after a sleepless night managed composed myself enough to spell out to the HT that I wouldn't have her writing my son off and that he needed the chance to succeed with her staffs' support and that they had not in fact made life easy for him by not putting measures in place to make him feel as ease as previously discussed. In addition, I was the one that phoned senior education people eg SPECTRUM and Challenging Behaviour Team (Scotland)) and insisted that they helped my son - they sat at the back of the class for 3 weeks solid. That did the trick!!! What they saw was an anxious little boy that was behaved badly because of that. They were able to advise staff on management strategies and two years on he's like a different child (he's by no means 'cured', but he's made excellent progress). That's my long-winded way of saying that it doesn't always make you popular, but if you don't stand up for your child then no one else will, particularly where budgets/league tables come into it. That said, you can be forceful and articulate without being aggressive. Sounds to me like you've done what any other caring and responsible parent would do for their children.

 

I think it's a sad fact that people do make snap judgements eg the HT that actually hinder progress. Such people are entitled to have their opinions, but in my view shouldn't be allowed to voice them without good reason.

 

Where new school is concerned, I again think that 'pester power' can help get support eg computer/scribe/etc. Granted parents can be labelled 'difficult', 'vocal', and unsavoury names, but again, if you don't ask you don't get. You're only fighting for what is your kids rights - in this day and age, we keep hearing about inclusion and the education dept need to put their money where their mouths are. Mainstream schooling without eg Learning Assistant support is still substantially cheaper than special schooling.

 

I found medical reports invaluable - they helped support a case for my son receiving 1-2-1 full time learning support which he's had now for 3 years.

 

Hang in there. You've every right to ask for the support that your kids need and deserve.

 

Caroline.

Edited June 3, 2008 by cmuir