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susiemumof3

Need to vent - such a discrepancy between school and home behaviour!

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Hi all, still getting nowhere fast with regards to appointments although have chased up the SALT and OT and they have assured me we will receive an appointment soon. I went into the school on Friday to ask for a meet with my son's new teacher (year 5 Primary) as we have an appointment coming up soon with the Child Development Clinic and I wanted to clarify some details before we go. She said that was fine and then stroked my arm telling me how it was all fine and his behaviour is perfectly normal and I need to not worry so much. Apparently in school he is a perfect angel and has friends. Anyway we met on Monday and had a very long conversation. I asked about eye contact because it's not something we see at home. She frowned and replied that I should not be looking for an autistic diagnosis as he is just lashing out at home which is perfectly 'normal'! (again, that word thrown at me!) I kept insisting that he was not coping somewhere along the line which would explain his high anxiety and anger issues at home. She said eye contact needs to be taught in all children and that we need to train him to look at people when they are talking to him.

I just feel so frustrated again. Although I feel towards the end of the meeting she was kind of understanding my issues, I still think the are seeing me as neurotic and slightly obsessed with my child (understandably as he appears to have two personalities!). Last night he had a MAJOR meltdown about something trivial which resulted in him crying hysterically that he couldn't go to school as he is scared he is going to hurt someone and he will get into trouble. I wonder if perhaps he is struggling to control his temper and anxieties now he is getting older.

On top of this, we are now worrying that our 7 year old is dyslexic like his dad and I am so worried about discussing this with the school as I can already feel their rolling eyes reaction and 'she's off again' mentality! Anyone else ever just feel like screaming????? I only want my child to enjoy his childhood and not be so sad. Should I take a step back and just let things occur naturally or should I keep pushing? Oh I am so confused!

Edited by susiemumof3

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Hi Susiemumof3

 

Sounds like you are doing the right thing keep pushing for the professionals to see him. It is so easy for school to turn a blind eye if the child is not causing a major headache to them and probably hard from them to understand the description you give them of the behaviour at home if he is an A1 behaviour student at school. We have the same with DD who keeps it all in at school and rarely melts down there (cries if she does) but can be a nightmare at home. She will hit her sisters, shout, throw things and stamp her feet while shouting and losing it!. At school she would be mortified to even say "boo" out of context if you get my meaning. We have just changed schools (infant to Junior) and the new school so far are really not taking her diagnosis and issues seriously. I was grateful for her Infant Head Teacher coming to a meeting and explaining that they have seen DDs difficult side come out just once at school when she didn't know there was a teacher watching but lost it with two boys and shouted at them. Just maybe the school are taking us a little more seriously now.

 

You know your son better than anyone so keep being his best advocate here. If you think he needs the help you are probably right. Keep smiling...but I know it can be hard.

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Yes I do know you can feel like you are going mad, and that others do not believe you. But you do need to be firm and just record things as evidence.

 

For your dyslexic child you can see yourself what his reading and writing skills are like. Is he keeping up with his peers? Is his written work marked much lower than his ability appears to be? Does he have problems with sequencing and planning and short term memory or working memory. Is his abillity in maths alot higher than in literacy? The fact that his father has dyslexia means that there is a higher possibility that either or both your children could be dyslexic.

 

I have a son with Autistic Spectrum Disorder, who was then further diagnosed with number of other disorders later down the line ie. Sensory Processing Disorder, Auditory Processing Disorder, Dyslexia, Dyspraxia and more recently Anxiety Disorder and OCD.

 

I have had to fight at each stage to get his needs recognised for what they are, because these are different disorders, and every child on the spectrum is difficult, as is every child anyway.

 

The school told me for years that they had no concerns. Well he attempted suicide - and still they had no concerns. Remarkable really. He refused school and did not attend for about a year, and now he has full blown OCD.

 

He is now, after our second Eduational Tribunal, at a school - the only school - that can meet his needs and he is doing well there. But it was very very hard for years because I had to be strong and methodical and get the referals and ask the questions and get my questions answered. For example. It is not typical for autistic children not be to be able to read and write. Yet my son is 11, which average cognitive ability, but still cannot read or write independently. He has finally been diagnosed with SEVERE dyslexia, and also problems with short term and working memory.

 

Personally, I would go via another route. You are presently trying to get professionals involved via EDUCATION.

 

The other route you can try is to go via your GP. Say that your child has an appointment to see the Developmental Paediatrician for assessment for autistic spectrum disorder. Due to his behaviour at home, which is always about school, say that you want him to be referred to a Clinical Psychologist that has experience of working with children on the autistic spectrum.

 

He may say that the Paediatrician can do that. Which she probably would do, as you need a multi disciplinary team to see him before any diagnosis is given. But by getting the GP to refer now you would save a bit of time.

 

But you need to keep a daily diary of what he is saying and doing at home - not just anxiety, everything you think is unusual.

 

My son's behaviour was always good in school. But that was because he did not know what to say to the children or adults about how he was feeling; he cannot understand his own emotional state anyway; he is very strict about keeping rules etc and he does not want to get into any kind of trouble in school for shouting or throwing things or getting upset. He hates to get into that state because he feels totally overwhelmed by it all. He would refuse school if he thought something was going to happen to upset him. But at home he will shout and scream. This morning he had a right ding dong, and kicked a chair across the room.

 

In his new school they have seem him lose it a couple of times. They have to involve two members of staff to manage his outbursts and help him calm down. So they do know. In his previous schools he just tried to contain it all until he became mentally ill.

 

So if you have concerns, believe in your own judgement. You have another child. You can see the differences.

 

"Last night he had a MAJOR meltdown about something trivial which resulted in him crying hysterically that he couldn't go to school as he is scared he is going to hurt someone and he will get into trouble. I wonder if perhaps he is struggling to control his temper and anxieties now he is getting older."

 

The above sounds like my son with OCD. In what way does he think he could hurt someone? Does he mean he is scared about getting angry, or is it about 'thoughts'. [And it is very difficult to even discuss these concepts with a child on the autistic spectrum - thankfully my own son does seem to recognise the difference between realistic fears and OCD obsessional thoughts].

 

But you should write down what he said. Because it is these types of things you need to tell the professionals. You need it written down because you will never remember everythting.

Edited by Sally44

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Hi There,

 

This is the first time I have written or replied to any posts, but yours mirrors my situation. I have a son who was diagnosed in 2009, (after I was asked by his teacher to take him to a paediatrician as there was something 'not right' about him. He had a major meltdown infront of the Doctor, hitting himself, lining up his toys, rocking, would not look at the doctor, I explained that he has never slept throught he night up on average 5 times, eats specific foods (although we are trying hard to change this), has a very negative self image, (will often just sit and cry for no reason and when asked why he is crying we are told, 'he is sad because he is different'). We received a diagnosis of Asperger Syndrome, and we are also awaiting diagnosis of ADHD and he is on medication for Tourette's although the medication does nothing!

 

Anyway, I am battling the school, he 'hates school' (his words), we struggle to get him to school (I have taken videos as proof), He has threatened to burn the school down, self harms in class by hitting himself, has threatened to stab 3 pupils (all in the last academic year) and I am told by the school that he 'is fine', I was told last week, 'that if I put my son in a school hall full of children, they would NEVER pick him out as a child with anything wrong with him!' So I am asking myself now, what could have happened between Reception when I was asked to take him somewhere as there was something wrong with him and Yr1 onwards when he became the perfect child in school?

 

He is no longer invited to parties, as parents have seen him regularly meltdown in the playground after school, which I believe contributes to his self loathing. Due to his increasing agressionand self harmimg we now have a referral to CAMHS, the school were going to refer us, (we never heard anything so I went to my GP), the autisitic advisory service are supposed to have observed him since 2010 in the school, although visits to the school have been made, no visits have been made and no reports produced on my son. He is on School Action Plus, but has no IEP, even for his behaviour, educationally they say he is fine, even though I was called in last year because of his very poor handwritting, (they couldn't read anything he was writing, when asked he said 'holding the pencil hurt'), so I spent many hours this summer helping him despite the meltdowns from being asked to do something he wasn't good at, and I have improved his hand writing. He only does homework if he wants to, maths is usually OK but reading, spellings and Literacy are areas that distress him greatly.

 

The school have asked if he 'puts it on just for me', so I can fully appreciate how you feel, as I feel like I am an inconvenience to them, my parents and close friends understand how bad it has got at home and are concerned for my safety as he gets older, but I feel with no acknowledgement from the school I can't move forward. We have been offered no support or help and I am feeling the strain as I am the focus for his meltdowns and also the only person he wants at night, so I am sleep deprived as well.

 

As for the school I am going to try and get an assessment done on my son, as I believe he needs the protection of a statement, if he issues threats against staff and pupils, refuses to do homework and is once again refusing to go, I believe he needs a ring of protection around him. I know the school will not help me, so I am 'going it alone' and trying to do it independantly, I don't know if I will get any where, but at least I feel like I am trying to do something!!

 

Good luck, I just wanted you to know you are not alone !!!!

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Download a copy of the SEN Code of Practice from the top of the Education Form section under Educational Publications. That will explain the SEN Graduated Approach.

 

If he is on School Action Plus they MUST have IEPS [i think it is a minimum of 2 per year]. And this book also sets out the areas of SEN which are academic, social communication and speech and language, emotional and behavioural, physical and sensory. So they are incorrect to say he has no needs because he is doing okay academically.

 

You need to get the self harming and anxiety and low self esteem documented via CAHMS [but remember that CAHMS is mainly about medication], so also get a referal to Clinical Psychologisy [a specialist service for children on the spectrum], because ClinPsych can advise school about approaches and strategies to use.

 

However, your options, if mainstream is not working and he is academically able, is to find an ASD specific independent school and get private reports and go to an educational tribunal. If he is struggling so much now in primary, it will almost certainly get worse, and he could be out of school, refusing to attend.

 

Yes he needs a Statement, and as a Statement takes 6 months to complete - and then are usually so bad that you have to appeal to the Educational Tribunal [sEND] anyway, which takes another 6 months. And things could be significantly worse in a year.

 

Start to log everything eg. behaviour, self harm, what he says about school and how he feels about himself. Any contact with school or professionals or meetings need to be logged via minutes or letters. If you do end up at a tribunal you can only submit paper evidence not heresay. So if you are told something by the head or teacher or professional, follow it up with a letter.

 

Yes, I also had professionals going into school that never produced reports. That is the LAs way of ensuring there is nothing in writing about his difficulties and needs. But the Statementing process will mean they have to submit a report.

 

What I would recommend is that you write to those professionals and ask them to carry out standardised assessments [for the SALT that would be expressive and receptive speech and language, social communication and play skills] [for the EP that is academic ability and emotional literacy and executive functions] [for the OT that is for sensory processing disorder, dyspraxia, daily living skills such as brush teeth, riding a bike, climbing a tree etc - as motor planning affects learning.]

 

Because if you request they carry out standardised assessments, and they do you will have a baseline reading of ability from which to measure progress from - and progress [or lack of it] is what triggers the next stage of SEN ie. additional support, specialist teaching, professional therapy etc].

 

You don't need the school or any LA or NHS professional to agree that he needs a Statement [often parents are told their child can get the same support with or without a Statement - which is true - but what they don't tell you is that if it is detailed in a Statement it is legally binding on the LA to provide it - without a Statement that support or provision or therapy can be removed without you being able to do anything about it.

 

So you write to the LA asking them to carry out a Statutory Assessment towards a Statement [have a look on www.ipsea.org.uk website as they have alot of template letters, and also lots of advice about the issues you are having].

 

If your LA refuses to assess you MUST appeal that decision to SEND as alot of LAs refuse to assess to weed out those parents not prepared to appeal.

 

And when you get the finalised Statement you will probably have to appeal again because the LA will issue a vague and ambiguous Statement that is not legally binding - the wording of the Statement IS THE MOST IMPORTANT THING. So make sure you lodge an appeal about the Statement ie. part 2 does not contain all of your child's needs, and part 3 does not quantify and specify the provision to meet each of those needs - and if needed - part 4 [name your parental choice of school if you have enough evidence that his current school cannot meet his needs].

Edited by Sally44

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