looking for some advice,please.

[Nic m]

Hi, everyone,

this is the first time i have started a topic so it may be a bit long trying to explain everything.

I received a report from the school ed psych a few days ago regarding my daughter and it has left me witha very uneasy feeling about what to do next.

Basically despite having a diagnosis of AS the school do not treat Hayley as such and i have gone down the road of formally requesting an assessment of her needs and this report is the result.

The report is quite detailed and informs of various tests and concludes that my daughter is a very bright intelligent child who is on the 94th percentile who is well adjusted sociable can make eye contact has a sense of humour does not have any problems with her bowels that the school have evidence of except once,and that if i need any advice on issues at home then they are willing to offer advice re behaviour and parenting as there are obvious differences in home/school reports.

While i would be delighted if this was my child they were speaking of i felt i had to question some things in the report so i called the ed psych but feel no further forward.

He disagrees with the diagnosis my daughter has ( i went down the private route could wait any longer and felt the school were dragging the process out) I told him that regardless of his opinion this diagnosis is fact. The psychologist who did the diagnosis is very well respected in this field and when i informed the CAT team of diagnosis they said they would not dispute this diagnosis so i asked him why would he? I also asked for clarity on bowel issues my daughter attend hospital outpatient appt every 6 weeks, i was called away from work regularly by school to clean my daughter or take her home, after care also have records of how often they had to clean her on collecting her from school.They have also given her the use of a toilet in school for her own personal use,would they do this on the basis of one incident, i think not.I agreed with him regarding my daughters intelligence but could not pin him down on why he thought this was an indicator that she did not have AS or why such an intelligent child struggles with simple rhymes and why she struggles with spelling and can still not recite the alphabet despite having a reading age of 15years, again no answers.

Testing that the school did that was beginning to show these discrepancies but miraculously she has no difficulties in school now and her test result in her areas of difficulty have leapt a couple of years in the last few months! ( i have kept all her class work to prove how bogus these results are and also cos i am a proud mummy).

Anyway he had no answers to my queries and i felt we both held our corners but i have a feeling i am about to face the biggest battle yet.

My GP is good the professor who deals with bowels is coming round now we have diagnosis and i have OT support from SS.

Despite my work background i am beginning to feel a bit paranoid, the school constantly refer to my feelings and how i am coping! I was very low last year due to dealing with my daughters distress but i would think this is normal when an 8 year old is talking of death and violence and has no sense of danger and was very depressed about how different she felt to her peers.I told him i would find it quite strange if a parent was not moved by this.He did agree with this thankfully.

My daughter will be in her last year of primary school next year and i need to get the support system in place for her before she goes on to secondary school.

Despite my difficult relationship with the head teacher i do not wish to move hayley as she would not cope with the change of school so my question is (if anyone is still reading at this point) what do i do next?

I do have a good relationship with SS as that was where i worked before giving up last year to care for hayley so i am not worried about that i do feel a bit paranoid at the implied suggestion that home is the issue.

Is the CAT team accepting the diagnosis enough, should i complain about the school attitude or should i keep gritting my teeth and get nowhere fast.

Thanks for reading this

Nicola

[phoebe]

Have you tried writing to your MP?

 

I am also currently experiencing difficulties with "the system" and the school. Sadly, it seems that you have to keep beating your drum and beating it loudly and frequently, I am warming up for another bash at it as I have still not received a response to my req for a Statutory Assessment.

 

Prior to my written request for a St As, I had a meeting with the school Head, the SENCo and teachers and told them that, although they are supportive in so far as they can be and they know my son well now, since they were still finding it necessary to Exclude him, how could he be expected to cope with the transition to senior? He has 2 years to go until he will start, but I feel I must do something to try and help him with the transition and that I would have to start sooner rather than later as they are notoriously good at dodging us parents. Anyway, I told them at this meeting that I was writing to the LEA and the local MP and that I basically wouldn't let it rest until someting was done to support him.

 

The MP wrote back straight away and copied me in on a letter that she had sent to the LEA on my behalf.

 

I did get an immediate response from the school and from the LEA - it wasn't satisfactory - and I know need to give them another prod!

 

Hev's post today about Social Services phoning her seems to indicate that a call from an MP seems to be far more effective sometimes than anything we try.

 

As we all know, we amass a mountian of paperwork with our children, we are so familiar with it and it is so close to our hearts, but, sadly, most people dont realise how difficult it can be to access any support and how demoralising it is for them to suggest that parenting is the issue Exhausting as it is -0 the only way is to make some noise.

 

Sorry to have rambled on and not been much help, have some <'> <'> and best wishes.

 

Phoebe

[Nic m]

Thanks phoebe,

i think you are right i do have to keep on going, i was just beginning to worry that despite evidence to the contrary what the school reports seems to have more weight than anything else.I think i am just a bit worried about going on with the fight if it seems more to be about proving me wrong (does that make sense) than really looking at my daughters needs.

On a positive note i am just back from hayley's paed appt and the doctor has agreed with me about stress in school needing to be looked at and has requested this support to be from our existing support in DCFP! so that is good news, i think i will contact my local councillor again she was very helpful in the past.

Thank you for replying, it really helps to know that others understand.

Nicola

[witsend]

Hi Nic, I think it sounds like you're doing a great job. All the fighting does wear you down I know but when you have to keep reminding yourself you know your daughter best and all you want is the best for her.

I have no idea why schools and ed psychs so often think they are infallible and that their word counts above everyone elses but it's an attitude I've certainly met over the years!

Stand your ground and if you don't agree with ed psychs 'findings' I think you are entitled to ask for a 2nd opinion so to speak.

If the school are harping on about 'how you're coping' etc in a way that makes you uncomfortable then I would quickly pull the conversation back to the matter at hand, ie whats happening with your daughter and her education! Sometimes I have to pretend I am talking about another child who isn't mine in order to get through various meetings so that I can appear detached enough to avoid being viewed as hysterical, neurotic, over protective, paranoid etc etc. Obviously once I'm safe at home I'm often in bits but like you say that is normal considering the stress we go through and the education system just don't seem to get that, do they?

Good luck with the next round!

Luv Witsend.

[Katiebell]

Hi Nicola,

 

This sounds like the same old story to me, sweep the problem under the carpet until she leaves our school.

 

My daughter is severely dyslexic. I have known she is dyslexic for years and finally gave up with any possibility of the school diagnosing her in Feb this year when I took her to be privatley assessed. Her school instantly went into denial and insisted that she could not possibly be dyslexic on the grounds of one mock SATs paper in which she made virtually no spelling mistakes (also known as coping strategies).

 

Basically, I gave up with her primary school as she only had a few months to go and took her report straight to her high school. It seemed to me that there was no point in arguing with the school as we all know everything takes so long to be acted on and I would rather she just made the most of her last short time at the school.

 

High School had a totally different attitude. Her report was accepted and acted on. She now has an IEP and gets her extra time in tests as recommended. My advice to you would be don't rock the boat at primary school, unfortunately and wrongly its too late now. Try approaching her pending high school, as she will be with them for several years they may be more willing to help you and your daughter.

 

Katiebell

[UltraMum]

i have gone down the road of formally requesting an assessment of her needs and this report is the result.

 

You should have had a letter acknowledging your request .. not just an Ed Psych report that appears to be designed to fob you off... . You can send in reports from other professionals you have had dealings with - especially good if they refute some of the points of the Ed Psych.

 

The following is from the ACE website regarding Statutory Assessment ... have a read and see whether you think the LEA are trying to put you off rather than agree to an assessment... http://www.ace-ed.org.uk/advice/booklets/Assessment.html

 

 

 

The LEA must look into your child's case to decide whether a statutory assessment is necessary when you or your child's school write to ask for this. They have 6 weeks from receiving your letter to decide. The LEA does not have to consider your request if your child has had a statutory assessment within the last 6 months.

 

If the school or some other body asked the LEA for the statutory assessment, the LEA will write to you saying they are considering this.

 

 

The LEA will:

• Tell you about the procedures for statutory assessment and statements
• Explain the timing of each stage of the assessment
• Give you the name of an LEA officer who can give further information
• Tell you of your right to explain why you want, or do not want, your child to be assessed (giving you at least 29 days in which to do this)
• Ask you whether you want them to ask anyone else about your child
• Tell you that you can send in any other reports about your child and these will be taken into account
• Give you information about the local parent partnership service

Before deciding whether to assess, the LEA will look at whether your child:

• Has not made progress even though the school, with the support of experts, has already given your child suitable help and/or
• Needs the sort of help which can only come through a statement because the school cannot be expected to provide it from their own funds.

The LEA will:

• Look at evidence from the school about help they have given and your child's progress. Sometimes progress is made only because a child has had much greater help than usually provided through School Action Plus
• Check that the school has adapted the curriculum to suit your child's learning needs
• Ask the school, other professionals and yourself about your child's learning difficulties.

You can:

• Write your own report
• Ask the LEA to approach other professionals about your child.

[lisa]

Nicola

 

Your story is very similar to ours. You need to go through this school Ed Psych report and reply to everything you don't agree with and why, explain your side of the story, so it's in writing, then copy it to everyone involved with your daughter including the LEA. We had this with our school ed psych as we'd had a private diagnosis and it was obvious from her report that she didn't agree. After I'd copied this letter to everyone the Ed Psych retracted her report and changed it!!! I think I'd shamed her because everyone had been copied and it made it look as though she didn't have a clue about AS and was being very biased, especially as I pointed out that she'd included all the good results and had omitted all the bad results!! She did a similar, disgraceful report for a friend and refused to change it after my friend phoned to complain but didn't put it in writing.

 

Our private diagnosis was by one of the most respected paediatricians on autism in the country and our NHS paed and SALT had both heard of her by reputation so had no problem with writing us a letter confirming the diagnosis of AS which was really helpful. It might be worth asking the CAT team if they would be prepared to write a letter endorsing the private diagnosis for you.

 

It's good that you've got proof of the areas of difficulty before the school's miraculous turnaround. This too happened to us. We have 2 kids with AS and the school were saying that my daughter was much worse than my son who already had a statement. As soon as we were turned down for statutory assessment, micraculously the school had no concerns whatsoever and did a complete backtrack. Photocopy the school work and include that as proof that you're not making it up. Luckily we had a letter from the head teacher telling us my daughter's end of year results, which they then tried to change to make it look as if she'd made more progress than she had.

 

Again, like your case, the ed psych tried to imply that it was a home issue and tried to make out that it was all my son's fault as he "torments" her!!!! I was furious. I had a report from CAMHS, as we'd already been seeing them due to L self harming and suicide threats, she was only 8, so very disturbing. In the report it praised our parenting skills and the strategies we were using, I also pointed out there was no evidence throughout the whole of our family therapy to say there was any conflict between L and my son. If you have anything like that it would help. I think they attack your parenting as a way of trying to get you to back off. Disgraceful. I sent in photocopies of extracts from books explaining the jekyll and hyde behaviour to prove my point that this wasn't a home issue. It was the fallout from not coping with school.

 

My daughter has toileting issues (leaking bladder) and has regular hospital appointments, the school, like yours, denied any knowledge of this, even though they'd been copied all the reports from the hospital and I'd spoken to them quite a few times as my daughter was sitting wet all day because she didn't want to tell anyone and they hadn't even noticed!! You have the evidence from the hospital to back up your claims anyway so it doesn't show the school in a good light to be denying the problem.

 

Like Ultramum says, you should have got a reply to your request for statutory assessment and be given the chance to send in evidence to back up your case. Send absolutely everything to them. I got my sister to write, I got L's sister to write and say what it was like living with L. I got L to fill in a questionaire I got from this site to express her views so there was no doubt and they couldn't put words into her mouth or try to pretend she was happy and that it was all the neurotic mum. I can't remember who it was from, Annie I think??

 

I also pointed out that as she was already self harming, depressed and threatening to kill herself at 8, the prognosis for her teenage years didn't look good. Secondary school is notoriously difficult for AS kids and if she is displaying this kind of behaviour in primary there was no way she'd cope with the transition to secondary without appropriate support. It was a lot of hard work but we eventually got a statement this year, despite the school and Ed Psych so it can be done!!

 

<'> <'> <'>

 

Good Luck!

 

Lisa

[JenRose]

Nic, your daughter sounds like my sons identical twin!!!

 

Same things happened with M, depressed, morbid talk, self harm and he has not managed to get back into school for a year.

 

We too had to go down the private dx route as CAMHS were dragging their heels and basing their non-dx on a 45 min ADOS test, we have had a struggle to get the LEA to accept our private dx even though our psych is well known as an expert in the field of ASD.

 

We are at the stage where i think we will be writing to our MP as our son has one more year after this one of primary school and i know he wont cope with high school, we want him to go to a special ASD school.

 

You sound like you are doing everything that you can do for your daughter, i too have been accused of being over anxious and hysterical but i throw it back in their face and say that i wouldnt be a good parent if i was showing no emotion.

 

Keep strong, and i hope that things start looking up for you in the new year, please feel free to pm me if you want to as our childrens situations sound so similar.

 

Jen

[pumpkinpie]

I think that there are just too many kids with asd and the system cant cope. For whatever reason leas seem intent on hiding the numbers involved and slowing down support ie ed psychs reports(they arent independant because they are accountable to the lea)

This leaves kids floundering because no one seems to want to admit the diagnosis and there is yet anotther asd child in the pot.

It is much easier for them to blame bad parenting, poverty and behaviour and not the leas and governments poor policies.

I strongly belive that just waiting and seeing what happens when a child gets to secondary school is setting those with severe bahaviour problems up for failure. Since sept I know 3 kids who entered yr7 and by half term where out - excluded for bad beahviour although the schools just hadnt put in the support these kids need! Taken the money and run!

 

I m on a sen group as a parent governor who recently were looking at decision on whether or not to put children forward for stat assess was correct. We had 5 cases and of the 3 that were for transision all the kids were out of school while a decision was being made, its scary stuff.

Our kids are being thrown into the pond to see if they sink or swim and their is no real planning�

[cmuir]

Hi

 

First thing that strikes me is that the educational psychologist is NOT QUALIFIED and has no business disagreeing with a diagnosis that has been given by someone who is qualified. It's not within an educational psychologists remit to do that.

 

Secondly, there are well documented reasons by psychologists why a child can behave differently at school and at home. The main one being that a child may be trying extremely hard to conform, fit in, concentrate, etc, that by the time they get home they're exhausted and vent that! That can sometimes make people complacent, but they should know this!

 

One thing that interested me was that you were saying your daughter talks about death, etc. My son is nearly 5 is exactly the same! My son's consultant was saying that it's not uncommon for AS kids to focus on this type of thing for some unknown reason.

 

The EP says your daughter is intelligent, has eye contact, plays imaginatively, etc. Is it possible that your daughter has variable eye contact ranging from sometimes, fixed stare, avoidance = general inappropriate and inconsistent eye contact? Does your daughter appear to play imaginately but in fact copy other children and what she's seen on TV, rather than make up things on her own? Autistic children can be very clever, in particular AS kids who have average of above average intelligence. Problem is that because they appear clever, doesn't mean that they don't have difficulties interacting with others ie initiating conversation, playing in groups games, etc.

 

You sound like you're doing all the right things asking for an assessment - by whom is the question?

 

Regards changing/personal care, unfortunately I've heard about schools refusing to change children. It's apparently because they aren't allowed to for fear of being accused of abuse, etc purely because it is a 'personal' care issue. It sounds crazy, but I can understand reluctance.

 

I know I was on the verge of going down the private diagnostic route, but had heard of difficulties with eg education ie people not recognising a private diagnosis. Could it be you could backtrack a little and seek an NHS one - should be made a lot easier. Chances are it would be same person providing a NHS one!?

 

Fact is, I don't know how you get around support for your daughter since it's provided by an EP. Does the school have a special needs suppport teacher? I know in Scotland there is an Act called the Support for Learning Act. An organisation called Enquire are fairly helpful/knowledgeable, don't know about England though.

 

However, the following are a good source of help/advice (Scotland and England):

 

http://www.ipsea.org.uk/

 

Best wishes.

 

Caroline.

[Nic m]

Thank you to all of you, it touches my heart that you have all taken the time to read this and help me.

I have given myself a kick up the backside and called enquire again luckily they have been taking notes on when i call with my difficulties with the school. I have also contacted the doctor who diagnosed Hayley and he is coming out on Monday to help with the support issue, he is going to give some suggestions as to how Hayley can best be supported in school.

I also contacted my old boss in social work who is more than willing to help state how often i was called from work to the school.

the thing i did wrong was not put the right wording in my letter requesting an assessment but i now have a copy of a letter sent from NAS that i can forward on to the school.

Hopefully things will move on another wee step, i have already contacted the secondary school i would like her to attend and i immediately warmed to it so fingers crossed.

Thank you again everyone, i really appreciate all of your advice.

Nicola