Is it me? Or is it him? Where do I go next?

[tom'smom]

I'm suffering a crisis of confidence and need a bit of advice. I need to explain rather a lot of history here, so be prepared this is going to be a long, long post.

 

Tom (9) in year 5 at school, received a diagnosis of ASD last May but I'm worried this may be withdrawn because the school seem to think I'm the one with a problem, not him.

 

I have 4 kids and there has always been something a bit different about Tom. I can't recall any specific development delay but to be honest it's hard to remember: when he was tiny we had uprooted the family to a different area, my eldest two were starting school/preschool, I was being treated for post-natal depression AGAIN and then fell pregnant with my 4th when Tom was 18mths and quite sick with it. Then my mum died suddenly when Tom was 3. So rather a stressful and mind-numbing time all round.

 

I do remember specific unusual behaviours like taking all the tomatoes out of the fridge and lining them up on the floor in a straight line, and watching the same DVD over and over and tantrumming when I turned it off. He's always been a fussy eater, but then so is my eldest. Tom was quite loud and lively at home, but quiet and withdrawn at nursery/preschool, with few friends, and he had trouble sharing. He loved to use the computers at pre-school and often had to be physically removed from them to let other children on, with accompanying tantrums. He had some motor problems with writing and drawing, was lefthanded and seemed to find it hard to guide a pencil around the page. But he learned stuff fast and was very keen on school once he started. He had one friend who he saw every day and who was content to let Tom boss him around.

 

Skip forward a couple of years...

 

The infant school complained about his inattentive behaviour and outbursts in every school report, but not to the point of requesting meetings or suggesting causes or solutions, and said he was making adequate progress, was creative and bright. Infant school was OK, he was friends with some of the girls and his one best friend. But then came the transfer to Juniors.

 

Year 3 became a complete nightmare with a very disciplinarian teacher who belittled Tom and made him stand up in front of the class because he wouldn't stop fidgeting and would look out of the window when she was talking. She complained that he didn't join up his writing and that it was unreadable. Didn't offer any help, just said we had to practice at home. Yeah right - if I wanted even more tantrums! Getting him to do the weekly homework was hard enough, it usually took two evenings even though he was perfectly capable of the actual work, just didn't want to do it. (To this day he doesn't join up his writing, can't remember which letters are tall unless reminded, and needs lined paper - although his words bounce up and down between lines like a tennis ball they don't wander all over the page like they do without lines).

 

By the end of the school year Tom was very unhappy and exhibiting verbal tics and destructive behaviours. His peers drifted away from him and started calling him 'weird'. Even his best friend wouldn't play with him in school. Tom's obsessions became overwhelming and he hooked up with a very manipulative boy who would only be friends with him if he would do things for him (like kicking other kids). School refused to sit them separately in class although this boy frequently got Tom in trouble for talking or fidgeting. Apparently Tom needed to learn to deal with this in a more suitable way. At parent's evening I was told he 'didn't fit the mould of school' and would have problems throughout his schooling if he didn't try to conform. No suggestion was made of ASD, ADHD or any other cause.

 

I was in despair about my very unhappy child. I wrote a list of all the problems he had (not just those exhibited at school) and took it to my GP. She tried to convince me it was all normal and would blow over once he was in another class. I eventually got her to refer to the community paediatrician. I also wrote to her directly. WE eventually got a reply just as he was starting in year 4.

 

Paed saw Tom at school and said she thought there were problems possibly ADHD and dysphraxia. She sent Tom to OT but they discharged him after one appointment despite saying they could see problems with handwriting, motor skills etc, they said his problems in PE etc must be attention-related because he could catch a ball when they threw it to him one-on-one. Paed continued to see Tom and do observations, send questionnaires, etc. She got off the idea of ADHD and suggested more likely ASD.

 

Thankfully Tom had a really nice teacher in year 4 and the tics subsided and he was happier to go to school. This teacher was brilliant - she has a cousin with ASD and recognised a lot of the symptoms, although she wasn't 'officially' allowed to say so. She negotiated with Tom when he didn't want to do something. She gave him responsibility for the class library, which he loved (he loves telling people what to do!). She happily completed paed's questionnaires and put Tom into a 'gym trail' group to help with his co-ordination and help him get rid of a bit of energy in the morning. More meetings with the paed resulted in a DISCO and finally a diagnosis of ASD, near the end of the school year. Teacher was pleased but said she didn't think he'd get any extra TA help in year 5 because of too many other kids in the year group with dyslexia etc - suggesting that because he's not dragging down the average achievement level because he's academically above average, any TA time would be given to those who were below average. No matter how unhappy or distracted he is.

 

School was informed of diagnosis by paed writing directly to Head, who has NEVER acknowledged the diagnosis. I had to chase and chase to get a meeting with Senco 3 months later. She said I needed parental support and that I would be sent an IEP to be signed. First IEP was useless, not measurable or achievable in any way, thankfully I had at this point spoken to Autism Suffolk who suggested I challenge them about it. School then scrapped it after a few months and replaced it with another. This one has targets such as 'tidy up your desk at the end of the day' and 'behave properly during swimming'. Am I missing something here, shouldn't this be about his EDUCATION? He has problems concentrating and the paed has suggested that he is underachieving because of this, recommending short bursts of activity rather than lengthy lessons, but they haven't addressed this at all.

 

Tom thinks he hasn't made any progress in English and Maths at the school since year 3 and his handwriting has got worse (the school say this is because he is left-handed, but my 7 year old is also left handed but he can join up and write more clearly than Tom, yet the infant school still say his writing needs improvement!). He is totally bored at school most days unless they are doing a topic he is passionate about. Because he is quite bright he probably still achieves above the average but that is no excuse for being allowed to stagnate IMHO. The current teacher says he is in a class with many SEN children (the classes were mixed up at the end of year 4, so how come so many SEN kids still ended up in one class???) with more severe problems than Tom (dyslexia) so he doesn't warrant any extra help or attention. There is one full time TA in the class, but she spends most of her time with a girl with Cerebral Palsy (who obviously needs extra help, but to the exclusion of all others?) This is a mainstream school by the way, which is rated 'outstanding' by Ofsted.

 

Tom still has no real friends, he tends to 'smother' new kids by being friendly to the point of obsession and they end up rejecting him. He has no one to play with most days, this sometimes bothers him and he has got into trouble by trying to join in others' games and then getting rejected and becoming angry. Paed suggested school tackle this with social skills help but guess what? Nothing. Actually they did finally let him join a 'nurture group' but it turned out this was full of all the bullies and unrepentant 'bad behaviour' kids and was basically just a holding camp to stop them infiltrating the playground. Not much nurturing going on! After Tom came home swearing and copying bad behaviour I asked the school to take him out of this group.

 

The Head is so convinced he has no problems she completed a request for info from the DLA office saying he should not receive DLA because he has no disability, just 'mild behaviour problems' and no problems with road safety, stranger danger etc (like she would know!!). The implication was that Head does not believe the diagnosis. I obtained a copy of her comments from DLA office and showed this to the paed at our last meeting and she was not at all impressed!

 

Paed has now arranged a meeting for me and Tom with the local Autism Spectrum Team on 15 Feb for 'assessment'. Not sure what or who is involved, but I am worried that they will now say there is nothing wrong with him because on first meeting he seems fine, he can talk ok with adults, and school is so convinced all he has is 'Fussy Parent Syndrome' if they approach the head for info I'm doomed. Admittedly Tom's obsessions have become more manageable recently (with the exception of computer games) but he still has massive social difficulties, no sense of direction and is hopeless at sports, and I am dreading the transfer to High School. I also know he will have problems concentrating for SATs, let alone writing legibly enough.

 

The parent support worker I have been allocated made me complete a CAF form but didn't explain what it was for (stupid me, I should have asked but just assumed it was to officially appoint her to mediate between me and school). Now they want to have a meeting. I have managed to get them to put it off until after this 'assessment'. But nobody that has been invited to this CAF meeting has ever met Tom apart from me and his teacher, and none of them has any special knowledge of ASD. I asked for the paed to be invited but she is too busy and couldn't make it until June.

 

Meanwhile I am starting to doubt my own mind. Because most of the work towards the diagnosis was done by me in answering questionnaires etc for the paed I am worried that the school will play on this and say that I have given a skewed impression of my child to gain a diagnosis. His behaviour is far worse at home than they claim to see at school, so maybe they are right that it is me that is the problem? I have questioned several decisions by the head on other matters not specifically related to Tom and I think she just views me as a troublemaker.

 

Sorry this is so long! I am feeling very down and unsure about things today Maybe I should change school but as he has only one more year before High School and hates change I am reluctant to do that. Any ideas???

 

Helen

[wasuup]

Apply for a statement of SEN?

[tom'smom]

Apply for a statement of SEN?

When I asked the school about this they told me not to bother as I wouldn't get it. He's not 'severe enough' they say. I'll ask paed when I meet with her on 15th.

I have heard he would need a SEN statement to get extra help at high school, so if it's a possibility I'll definitely try. I admit I am not au fait with the whole process of statementing but the local NAS support group is full of people who are having to appeal to tribunals because they've been refused a statement. Is it worth it?

BTW Thanks for taking the time to read my original post

Helen

[wasuup]

Hi Helen that's ok.

 

The school are talking rubbish.

 

Have a look at the IPSEA website you can apply yourself.

[wasuup]

[[http://www.asd-forum.org.uk/forum/Index.php?/topic/20381-special-educational-needs-advice/]]

[flappyfish]

How frustrating! Obviously I can't say if you are 'a fussy parent' or if there is anything amiss with your son, but I do know that the subtle difficulties are very hard to tackle. My very bright and able son was in a very emotionally literate and supportive primary, but his difficulties were very subtle and he never underachieved enough to hit the data radars. It wasn't until he had some sort of severe depression in year 5 that people started to do anything very concrete and he never had dedicated support (although currently 5% of a school's budget is for SEN provision, so he did get some help).Via CAMHS and various serendipitous contacts, he was diagnosed as ASD during the summer break before High School. Mercifully, the SENCO there was very proactive and applied for funding before he went. He is now very well supported althugh struggling hugely with all the 'little' things that your son experiences. I recognise every one of them in my son, and I think you are right to follow it up. These things aren't problems if they are not a problem, but if they are creating anxiety and upset, then they are. I think all parents go through the 'what if I overstated it?' angst (I even asked the Psychiatrist what he would have said about my son if we had been dead and they hadn't spoken to school!). When things are good, which they are some of the time, you can begin to think you've imagined it, and when they are bad, you know you didn't!! I hope you get somewhere.

[tom'smom]

How frustrating! Obviously I can't say if you are 'a fussy parent' or if there is anything amiss with your son, but I do know that the subtle difficulties are very hard to tackle. My very bright and able son was in a very emotionally literate and supportive primary, but his difficulties were very subtle and he never underachieved enough to hit the data radars. It wasn't until he had some sort of severe depression in year 5 that people started to do anything very concrete and he never had dedicated support (although currently 5% of a school's budget is for SEN provision, so he did get some help).Via CAMHS and various serendipitous contacts, he was diagnosed as ASD during the summer break before High School. Mercifully, the SENCO there was very proactive and applied for funding before he went. He is now very well supported althugh struggling hugely with all the 'little' things that your son experiences. I recognise every one of them in my son, and I think you are right to follow it up. These things aren't problems if they are not a problem, but if they are creating anxiety and upset, then they are. I think all parents go through the 'what if I overstated it?' angst (I even asked the Psychiatrist what he would have said about my son if we had been dead and they hadn't spoken to school!). When things are good, which they are some of the time, you can begin to think you've imagined it, and when they are bad, you know you didn't!! I hope you get somewhere.

Thanks flappyfish, it's good to have that reassurance from someone with similar experience. The school has been so negative I wish I'd gone with my gut instinct to move him when the problems first started in year 3; I feel it would be too disruptive to do it now unless things deteriorate further. I also now have to face the possibility that my younger son will get the same year 3 teacher and have a similarly awful year (he's quite hyper and LOUD so she's going to absolutely LOVE him )

 

 

Interesting to hear about the 5%. The head at this school tells me that 20% of the intake has SEN so maybe that 5% is being stretched too far.

 

I totally relate to what you say about 'subtle differences'. They are always there: sometimes they erupt in a big way, sometimes bubble up or just simmer. But they are always there. He is doing o...k... but not OK at the moment (if you see what I mean). There is always the imminent threat of 'not ok' .

 

And thanks wasuup, I took a quick look at the IPSEA website - another one no one had suggested to me before - and it looks really helpful. I will set aside some time to go through it properly in a couple of days - I'm on the NAS Help! course starting tomorrow.

 

Helen

[justine1]

Hi

 

As far as I know if you have a written diagnostic report nobody can remove this from you,especially if it has been given after age 5,as its likely his difficulties will not go away.

 

With regards to you being the problem,again if he has a full diagnoses then there is nothing you could have done differently,but you can help your son now you know what the problem is.Soe parents will just accept the diagnosis and not change anything or use it as an excuse but he can encourage hi so that he can live a "normal" life.You can get him to do some extra writing each day by getting him to write simple sentences and using rewards and imposing sanctions,like he cannot watch telly or play games until he has written a sentence(increase to two then three etc) I have done this with my son age 7 and he has been improving.I let him chose what he wants to write about he loves spongebob so its usually a quote from that.

 

You can use visual timetables and timers so that he knows what to expect and how long he has to complete tasks.There is lots of advice in the various topics on here and also try the NAS website.

 

I would say if you not happy with his education you need to really push to get him help.

[Kathryn]

Hi Helen,

 

That sounds very frustrating!

 

If your son has gone through a full assessment and received a diagnosis, it's not the place of the head to question it. She isn't medically qualified to do so is she??

 

Hopefully the ASD team meeting will be productive and they will support you in trying to get the school to understand where your son's difficulties lie and suggesting ASD specific strategies they could use.

 

Many children with ASD behave differently at school and at home, a lot has been written about this and it's an issue which has been discussed on this forum too. A child who can hold it all in at school may let out all the built up stress in the safer environment of home. Continue to keep a diary of anything you notice about his behaviour, it may help when you talk to the ASD team and others.

 

A CAF is a bit of a pointless exercise in my opinion, but it can't do any harm. It may not result in any help, but it may provide useful evidence which could go towards a statutory assessment. If someone who knows about ASD could be at the meeting, it may help.

 

As wasuup says, you can start the statementing process yourself. You don't need the school's agreement, although it helps. If the school are denying any problem exists, you will have to have very robust evidence from other sources to show that it's necessary. All you need to do to start it off is write to your LEA to request a Statutory Assessment. The request may be turned down if you can't show that your son's difficulties are significant and if the LEA feel that there is more the school could be doing to support him. However you can appeal to the SEN tribunal against this decision. You will be told many times that you won't succeed, so you may need to develop a thick skin and just get on with it!

 

You don't need to be going through the statementing process for your son to get help. I'm assuming he's on School Action or School Action Plus? You could ask the school if the educational psychologist could come and assess him.

 

IEP targets can be behavioural and social as well as academic, so a target to tidy his desk at the end of the day may be appropriate - as long as he understands what exactly is required. The task may need to be broken down into smaller steps. "Behave properly during swimming" is too vague and subjective a target - what must he actually do? How will he know if he has achieved it? What support will he get to help him?

 

My daughter also chugged along at primary school with fairly supportive teachers, staying just under the SEN radar as she was doing OK academically and she was fairly passive and compliant, but in year 6 and secondary school more of the problems started to show. If you feel your son will need a lot more help in secondary school, now is the time to start pushing for it.

 

Hope some of this helps,

 

K x

[tom'smom]

Thanks Justine1. I am going to try getting him to write more at home, as the younger one also needs to practise his handwriting I can get them to do it together. Whether this will work will probably depend on his mood when he comes out of school; he is sometimes so stressed that the very suggestion of picking up a pencil will send him into meltdown. I guess on those days I could get him to write out his anger but I don't think that'd improve the neatness much!

[smiley1590]

i have A.S and dyspraxia i used find handwriting difficulties and found very frustrating OT's T.A's used to write the word in yellow felt tip i have go over it in pencil i also had to do worksheets to practice handwriting and fine motor skills i also used use rubber matting underneath paper stop slipping and also use triangle pencil grip to ease hard pressure on fingers/hand when handwriting i personally understand your son's struggles with handwriting he probably find frustrating so that why when he knows coming up he results in meltdown as his ASD wants him to try be 'perfect'!!!

 

XKLX

[tom'smom]

 

If your son has gone through a full assessment and received a diagnosis, it's not the place of the head to question it. She isn't medically qualified to do so is she??

 

My thoughts exactly! She's also extremely patronising which totally winds me up

 

 

Many children with ASD behave differently at school and at home, a lot has been written about this and it's an issue which has been discussed on this forum too. A child who can hold it all in at school may let out all the built up stress in the safer environment of home. Continue to keep a diary of anything you notice about his behaviour, it may help when you talk to the ASD team and others.

 

 

I have been trying to get this across to the teachers, they just don't seem to get it (or care). I am keeping notes on behaviour and triggers so hopefully they'll look at that.

 

You don't need to be going through the statementing process for your son to get help. I'm assuming he's on School Action or School Action Plus? You could ask the school if the educational psychologist could come and assess him.

 

Not sure whether its School Action or not, it doesn't say on his IEP although someone told me recently it should do?? I will query this with the school.

 

Hope some of this helps,

 

 

It all did! Thanks

Helen

[smiley1590]

he can have combined traits ADHD ,ASD and Dyspraxia that overlap as many of these conditions commonly do suffer from mixture of some other conditions traits hyperactivity etc

 

http://www.asdfriendly.org/board/index.php?showtopic=19285

 

XKX

[smiley1590]

has he been asessed for dyspraxia ADHD has it been researched further looked into???XXX i would get second opinion i would appeal ....

[tom'smom]

has he been asessed for dyspraxia ADHD has it been researched further looked into???XXX i would get second opinion i would appeal ....

I'm hoping to raise this with the AST team at the meeting, he certainly has elements of both. I had initially suggested it might be dyspraxia but they seem to have gone off that tack since diagnosing ASD, maybe because OT didn't think he had a problem.

 

Your comments re handwriting sound so familiar, the teachers used to do the felt tip thing with Tom too but stopped when he left the infants. I persisted for a while but there was little improvement. Now the teachers are saying it doesn't matter as long as its legible but that attitude does seem to vary from one teacher to another so next year he could get one who nags him about it again. Hey ho.

Helen

[smiley1590]

does he have physical gross motor difficulties too such as throwing catching a ball riding a bike balancing co -ordinating knowing his left from right hand etc? i would keep fighting pushing for dyspraxia and ADHD diagnosis? as really sounds like dyspraxia and ADHD to me!!! i had yellow felt tip in infants and then OT followed through into juniors school and became more intense drawn out hours spent on praticing the skills that affected missing i used end up really frustrated tired as work really hard during sessions as well as 'normal' school work! i was officially diagnosed with Dyspraxia first but mum had fight battle push for that to happen! paedtrician,OT and SENCO disagreed that didn't display enough traits when mum wrote a long long list of what signs i was showing in childhood i have read them and looking back i see A.S there too hiding in background undiscovered same could be for your son with dyspraxia and ADHD as longer it left the long frustration builds up boils over affects self esteem i been there earlier the more improved can be!!!

 

XKLX

[smiley1590]

i have different attitudes from teachers .... some affected me more worse negative more than others damaged self esteem how they 'labelled' you as 'bad' disruptive 'naughty' child and sent me out i also used concentration alot and not be able sit still for more than sec and also get hyper alot! one english teacher than was 'moaner' and 'perfectionist' used to 'pick up' on handwriting 'how large it was' asked me scale it down and stopped using capital letters and make my handwriting neater take time and effort i tried to explain all fell on 'deaf ears' so annoying frustrating!!!

 

XKX

[Sally44]

Asking the LA to assess towards a Statement should trigger all professionals to do assessments and reports (unless you already have SALT, EP, Paediatrician and OT reports??).

 

Most likely the LA will either refuse to assess, or assess and then refuse a Statement. You can appeal both.

 

Contact your LAs parent partnership and get them to see the IEP and ask them to come with you to any meetings in school (including IEP meetings). You need SMART IEPs and you submit the IEPs as part of your evidence towards the Statement.

 

Your local authority should also have an autism outreach teacher. Phone the LA and get her contact number and speak with them. They can come into school to see how the child can be better support in lessons and during playtimes etc.

 

Social interaction is the remit of the SALT. Have they assessed him. Get in touch with them and say that you want him to be assessed. See if they need a referal from school or the paediatrician. Or your request for an assessment towards a Statement may trigger them assessing.

 

As soon as you know your child is going to be assessed you can phone each department (speech therapist, educational psychologist etc and ask to speak with the Head of the Department. You can ask them that staff experienced in Aspergers assesses your son, and ask them to do standardised assessments. Standardised assessments give a baseline age related result ie. reading age of 7 at age 10. From this you can measure progress. After speaking with them send in a confirmation letter of what was discussed and agreed.

 

Just document all instances at home or in school that involve difficulties typical of an ASD (the triad of impairments), dyspraxia, sensory issues etc.

 

It is very common for children to behave differently in one environment to another. I think alot depends on the functioning level of the child. If they want to fit in and don't want to get into trouble they can just try to keep it together whilst in school.

 

My son has been similar to yours. But mine also has severe SpLD (dyslexia/dyscalculia) and also severe problems with working/short term memory. He is now about 5 years behind his peers in mainstream. We are going to an further educational tribunal soon (this will be the second one).

 

My son's self esteem has plummeted over the years, but especially during year 5. He is now refusing school and threatening suicide. And school are still saying he is making good progress and they have no problems! We recently had him accessed by a private EP and he says my son is typical cognitive ability. That will help at the appeal.

 

Start the process of a Statement and start looking for secondary schools. Have a look at any that have autism units on site as they should have a better understanding. You really need to know his speech and language levels as well as social communication and social language. You need to include details of emotional recognition in himself and others.

 

If there are any independent special schools in your area for children with Aspergers it might be worth visiting just to see what they are like. You don't have much time before you will be discussing tranfer in year 6.

 

It is a draining on-going struggle and many many parents have the same problems with schools just not recognising difficulties. Schools/LEAs have blanket polices that are illegal (see IPSEA website).

 

A Statement is a legally binding document. Even now, after all the time we've been in the process, I have just had a letter from the SENCO which confirms (amongst other things) that my son does not have any emotional literacy programme because "school do not have any problems and do not think he needs one.". His Statement says "XXXX WILL have an emotional literacy programme." So school are acting illegally. I am not writing to the LA about non-compliance or seeking Judicial Review, simply because the rest of the Statment is pants. But if I did, the LA would have to ensure the school did provide it. But school seem to think they are a law unto themselves. It is very very very frustrating. But don't give up, and take some comfort in knowing you are one of many!

 

There are many organisations that can help you slowly get on track ie. IPSEA, ACE, Network 81, NAS etc. Use them they are free and will help you enormously. Also download a copy of the SEN Code of Practice from the publications section at the top of the Education forum.

 

If you get a Statement and things still go pear shaped then you may need to appeal for an independent placement.

[tom'smom]

Wow, thanks Sally there is loads of info there. It's good to know that other kids seem 'normal' at school and different at home, I really was starting to believe I was the problem i.e. not doing a good job at parenting.

 

My elder two are at an excellent Catholic high school that has really good pastoral care and SEN provision, so we are hoping to send him there unless it seems he will need more specialist AS schooling. I've a friend whose son is AS and he's well supported there and is much happier than he was at my son's primary. I think any high school is going to be a huge issue, with all the changing from room to room and squashing in the corridors. Let alone the biology practicals!

 

Hopefully this meeting on 15 Feb will clarify what's happening with assessment etc, and I can discuss possible statementing with the various people that are there.

 

Helen

[BusyLizzie100]

Just wanted to say hi and send <'> ><

 

Your situation sounds not dissimilar to that of our eldest son (DS1). DS1 has AS and is academically able; both school and the Ed Psych said he didn't need a Statement. We said he did, largely on account of social, emotional and behavioural issues and dyspraxia, as did the clinical psychologist at CAMHS and the NHS OT. He was turned down for statutory assessment in Y3, we could have appealed but waited until Y5, and applied again. This time the school EP still said no chance, but the LA's senior EP found significant cause for a statement and supported us. The LA assessed and right at the end of Y6 he got a Statement.

 

One of the most significant things in his statement is how easy it is to underestimate his needs, because he appears superficially socially able, ie you just can't tell unless you know him well. This still causes problems occasionally at secondary school, with so many different teachers, but the statement is a legal document and there are processes that must be followed, by law. He had a bad Y7 when school were convinced he didn't need the statement, but by the end of the year things were unravelling badly and became a little 'more obvious'. Now in Y8 he has a new, more understanding SENCO and things are improving.

 

Check out this link from the National Autistic Society about changes in behaviour at home and school:

 

http://www.autism.org.uk/living-with-autism/understanding-behaviour/behaviour-common-questions-answered/different-behaviour-between-school-and-home.aspx

 

Most importantly, if you think your son needs more support or a statement, then apply yourself. It can be a battle, but stick at it. AS suggested, check out the IPSEA website and/or call the helpline.

 

All the best,

Lizzie x

Edited February 2, 2011 by BusyLizzie100

[JsMum]

I'm suffering a crisis of confidence and need a bit of advice. I need to explain rather a lot of history here, so be prepared this is going to be a long, long post.

 

Tom (9) in year 5 at school, received a diagnosis of ASD last May but I'm worried this may be withdrawn because the school seem to think I'm the one with a problem, not him.

 

I have 4 kids and there has always been something a bit different about Tom. I can't recall any specific development delay but to be honest it's hard to remember: when he was tiny we had uprooted the family to a different area, my eldest two were starting school/preschool, I was being treated for post-natal depression AGAIN and then fell pregnant with my 4th when Tom was 18mths and quite sick with it. Then my mum died suddenly when Tom was 3. So rather a stressful and mind-numbing time all round.

 

I do remember specific unusual behaviours like taking all the tomatoes out of the fridge and lining them up on the floor in a straight line, and watching the same DVD over and over and tantrumming when I turned it off. He's always been a fussy eater, but then so is my eldest. Tom was quite loud and lively at home, but quiet and withdrawn at nursery/preschool, with few friends, and he had trouble sharing. He loved to use the computers at pre-school and often had to be physically removed from them to let other children on, with accompanying tantrums. He had some motor problems with writing and drawing, was lefthanded and seemed to find it hard to guide a pencil around the page. But he learned stuff fast and was very keen on school once he started. He had one friend who he saw every day and who was content to let Tom boss him around.

 

Skip forward a couple of years...

 

The infant school complained about his inattentive behaviour and outbursts in every school report, but not to the point of requesting meetings or suggesting causes or solutions, and said he was making adequate progress, was creative and bright. Infant school was OK, he was friends with some of the girls and his one best friend. But then came the transfer to Juniors.

 

Year 3 became a complete nightmare with a very disciplinarian teacher who belittled Tom and made him stand up in front of the class because he wouldn't stop fidgeting and would look out of the window when she was talking. She complained that he didn't join up his writing and that it was unreadable. Didn't offer any help, just said we had to practice at home. Yeah right - if I wanted even more tantrums! Getting him to do the weekly homework was hard enough, it usually took two evenings even though he was perfectly capable of the actual work, just didn't want to do it. (To this day he doesn't join up his writing, can't remember which letters are tall unless reminded, and needs lined paper - although his words bounce up and down between lines like a tennis ball they don't wander all over the page like they do without lines).

 

By the end of the school year Tom was very unhappy and exhibiting verbal tics and destructive behaviours. His peers drifted away from him and started calling him 'weird'. Even his best friend wouldn't play with him in school. Tom's obsessions became overwhelming and he hooked up with a very manipulative boy who would only be friends with him if he would do things for him (like kicking other kids). School refused to sit them separately in class although this boy frequently got Tom in trouble for talking or fidgeting. Apparently Tom needed to learn to deal with this in a more suitable way. At parent's evening I was told he 'didn't fit the mould of school' and would have problems throughout his schooling if he didn't try to conform. No suggestion was made of ASD, ADHD or any other cause.

 

I was in despair about my very unhappy child. I wrote a list of all the problems he had (not just those exhibited at school) and took it to my GP. She tried to convince me it was all normal and would blow over once he was in another class. I eventually got her to refer to the community paediatrician. I also wrote to her directly. WE eventually got a reply just as he was starting in year 4.

 

Paed saw Tom at school and said she thought there were problems possibly ADHD and dysphraxia. She sent Tom to OT but they discharged him after one appointment despite saying they could see problems with handwriting, motor skills etc, they said his problems in PE etc must be attention-related because he could catch a ball when they threw it to him one-on-one. Paed continued to see Tom and do observations, send questionnaires, etc. She got off the idea of ADHD and suggested more likely ASD.

 

Thankfully Tom had a really nice teacher in year 4 and the tics subsided and he was happier to go to school. This teacher was brilliant - she has a cousin with ASD and recognised a lot of the symptoms, although she wasn't 'officially' allowed to say so. She negotiated with Tom when he didn't want to do something. She gave him responsibility for the class library, which he loved (he loves telling people what to do!). She happily completed paed's questionnaires and put Tom into a 'gym trail' group to help with his co-ordination and help him get rid of a bit of energy in the morning. More meetings with the paed resulted in a DISCO and finally a diagnosis of ASD, near the end of the school year. Teacher was pleased but said she didn't think he'd get any extra TA help in year 5 because of too many other kids in the year group with dyslexia etc - suggesting that because he's not dragging down the average achievement level because he's academically above average, any TA time would be given to those who were below average. No matter how unhappy or distracted he is.

 

School was informed of diagnosis by paed writing directly to Head, who has NEVER acknowledged the diagnosis. I had to chase and chase to get a meeting with Senco 3 months later. She said I needed parental support and that I would be sent an IEP to be signed. First IEP was useless, not measurable or achievable in any way, thankfully I had at this point spoken to Autism Suffolk who suggested I challenge them about it. School then scrapped it after a few months and replaced it with another. This one has targets such as 'tidy up your desk at the end of the day' and 'behave properly during swimming'. Am I missing something here, shouldn't this be about his EDUCATION? He has problems concentrating and the paed has suggested that he is underachieving because of this, recommending short bursts of activity rather than lengthy lessons, but they haven't addressed this at all.

 

Tom thinks he hasn't made any progress in English and Maths at the school since year 3 and his handwriting has got worse (the school say this is because he is left-handed, but my 7 year old is also left handed but he can join up and write more clearly than Tom, yet the infant school still say his writing needs improvement!). He is totally bored at school most days unless they are doing a topic he is passionate about. Because he is quite bright he probably still achieves above the average but that is no excuse for being allowed to stagnate IMHO. The current teacher says he is in a class with many SEN children (the classes were mixed up at the end of year 4, so how come so many SEN kids still ended up in one class???) with more severe problems than Tom (dyslexia) so he doesn't warrant any extra help or attention. There is one full time TA in the class, but she spends most of her time with a girl with Cerebral Palsy (who obviously needs extra help, but to the exclusion of all others?) This is a mainstream school by the way, which is rated 'outstanding' by Ofsted.

 

Tom still has no real friends, he tends to 'smother' new kids by being friendly to the point of obsession and they end up rejecting him. He has no one to play with most days, this sometimes bothers him and he has got into trouble by trying to join in others' games and then getting rejected and becoming angry. Paed suggested school tackle this with social skills help but guess what? Nothing. Actually they did finally let him join a 'nurture group' but it turned out this was full of all the bullies and unrepentant 'bad behaviour' kids and was basically just a holding camp to stop them infiltrating the playground. Not much nurturing going on! After Tom came home swearing and copying bad behaviour I asked the school to take him out of this group.

 

The Head is so convinced he has no problems she completed a request for info from the DLA office saying he should not receive DLA because he has no disability, just 'mild behaviour problems' and no problems with road safety, stranger danger etc (like she would know!!). The implication was that Head does not believe the diagnosis. I obtained a copy of her comments from DLA office and showed this to the paed at our last meeting and she was not at all impressed!

 

Paed has now arranged a meeting for me and Tom with the local Autism Spectrum Team on 15 Feb for 'assessment'. Not sure what or who is involved, but I am worried that they will now say there is nothing wrong with him because on first meeting he seems fine, he can talk ok with adults, and school is so convinced all he has is 'Fussy Parent Syndrome' if they approach the head for info I'm doomed. Admittedly Tom's obsessions have become more manageable recently (with the exception of computer games) but he still has massive social difficulties, no sense of direction and is hopeless at sports, and I am dreading the transfer to High School. I also know he will have problems concentrating for SATs, let alone writing legibly enough.

 

The parent support worker I have been allocated made me complete a CAF form but didn't explain what it was for (stupid me, I should have asked but just assumed it was to officially appoint her to mediate between me and school). Now they want to have a meeting. I have managed to get them to put it off until after this 'assessment'. But nobody that has been invited to this CAF meeting has ever met Tom apart from me and his teacher, and none of them has any special knowledge of ASD. I asked for the paed to be invited but she is too busy and couldn't make it until June.

 

Meanwhile I am starting to doubt my own mind. Because most of the work towards the diagnosis was done by me in answering questionnaires etc for the paed I am worried that the school will play on this and say that I have given a skewed impression of my child to gain a diagnosis. His behaviour is far worse at home than they claim to see at school, so maybe they are right that it is me that is the problem? I have questioned several decisions by the head on other matters not specifically related to Tom and I think she just views me as a troublemaker.

 

Sorry this is so long! I am feeling very down and unsure about things today Maybe I should change school but as he has only one more year before High School and hates change I am reluctant to do that. Any ideas???

 

Helen

 

Why do you think the Headteacher wants this to be all in your Head, so you dont ask him to take responsibility to meet your sons special educational needs thats why.

 

You have a diagnosis and that is more than many parents with children ASD needs, so I would just except the Head is not going to agree but at the end of the day your son has a confirmed diagnosis of ASD.

 

I would fight for what you FEEL your son NEEDS to cope in a mainstream education provision.

 

I would concentrate on the statement ready for High school and I would be contacting the SENCO of the High school you have choosen as he should have a statement detailing the secondary school by Febuary if he did have a Statement.

 

I would look at what provisions, therapies you feel your son needs.

 

So for example Speech and Language therapy, OT if you felt he required sensory intregration therapy, small class sizes with a specified amount for example a class size of no more than 8 or 12 or a number you can see your son handling in a group situation.

 

Social stories, Visual prompts, Visual Timetable, Mapping and sequencing materials, Access to Laptop, ICT equiptment.

 

One to one Learning support Assistant, how many hours per day would you recommend your son requires one to one would it be for targeted lessons for example Literacy, Mathematics, or for just ensuring he understands the instructions, scribing, note taking, ect...

 

Does he require assistance, supervision on school trips, dinner times, unstructured routines exct..

 

Do you feel your son requires focused social skills classes, language groups, independant skills, living skills.

 

Basically if someone waved a magic wand and said you can have what your son needs what would that be.

 

I would defo get the ball rolling with a request of a statement, I requested it, I think many parents do, I got told the same as you and my son was actually below the line of where the radar line was, he had significant delays and still he wasnt severe enough and he was already severe but they wanted that to be even more severe so your son will never meet that radar as there is always a child worser off than ours.

 

So get form filling.

 

I recommend a Child advocate now as children in need meet the criteria, if a child has a disability they meet the child in need criteria so look out for your nearest childrens rights officer child advocate.

 

They will note down your sons wishes and feelings and share these in meetings and ensure that the childs wishes are taken into consideration.

 

I would also recommend if you can afford it carry out independant SAL assessments and an independant Educational Psychologist assessments these can be very instrumental in accessing a good statement, you can request independant names from National Autistic Society.

 

My last quick recommendation is to look at attending a local NAS group and also for more information on statmenting process absaloutly recommend CONTACT A FAMILY, these can also help you with the discrepencies with school and home needs reguarding your sons DLA.

 

http://www.cafamily.org.uk/index.php?section=861

 

I would defo fight for what you son needs especially as he is transitioning to secondary education.

 

JsMumx

[dm2010]

I guess I could summarise this :

 

Good teacher = progress

Bad teacher = disaster

 

Aspies do exceptionally well with good teachers and exceptionally badly with the bad ones.

The overall school ethos does make a small difference, but it's an individual teacher in a classroom that really makes things work - or not. What you describe here is unprofessional and unacceptable behaviour by a teacher who should know better.

 

My parents and grandparents were teachers so I know this from both sides of the fence.

 

Therefore my counsel would be this - the situation will not improve unless the bad teacher(s) your son has to put up with are replaced with competent professionals, which you will need to assess by speaking to them personally. That probably means changing schools, but don't hesitate if that gives the right result. The SEN stuff won't help unless it solves this fundamental problem.

[littleG]

Hi Tom's Mum

 

We have just had our 8 yr old son diagnosed with AS. It took 7 years of being told there was nothing wrong.

 

Believe in yourself, the parent DOES know.

 

The school, outstanding by OFSTED, refused to acknowledge anything other than parent incompetence.

 

We went to the local council website and found a number of schools that had Specialist Learning Centres (for ASD).

 

We sought a second opinion as to our sanity - WHAT A RELIEF!

 

Current school still maintains we are the problem. He is great at school and a nightmare at home - but only in term time - holidays are a dream!

 

Our son has changed school - even before starting we have had more support and understanding than we have had in the last 2 yrs from current school.

 

Our son is NOW on School Action Plus and a home/school book is condsidered essential (the last school flatly refused to do this) and his new school is is encouraging us to enable them to participate with us in educational programmes run by the National Autistic Society.

 

I would suggest you contact the NAS and ASK - they have been fantastic and have given us the confidence and support to fight this lonely battle.

 

I wish we lived nearer, we are in Wiltshire, we could then have met for a chat, coffee and cake. Never mind, an online chat, coffee and cake is less fattening!!

 

Don't lose heart, keep battling, the rewards are invaluable, we are getting closer to our son at last and a caring and determined mum like you will also do the same.

 

A very big hug from Wiltshire.

 

x

[Sally44]

What I found so frustrating was that for years we have been struggling and now that we are finally under clinical psychology and CAHMS they are saying that our experiences are "typical". That pulled be back from the brink of insanity! School have been saying for years that the difficulties were due to "the home environment". And what really angers me is that everyone must know. We, as parents, have only the experience of our own children. These professionals actually know that what we are experiencing is not unusual and is often not our fault. But to actually admit that means they have to address the child's problems and support them and meet their needs in school. That costs money.

 

And now my son has been out of school (refusing to go) since end January, he has started sleeping in his own bed and we are starting to get back the boy I vaguely remember from years ago. I've managed to move back in with my husband (after years of sleeping in a bunk bed). Obviously being out of school is not a permanent option, but what it proves is that alot of the problems were due to school and his inability to cope there. And what even the OT has admitted is that this change in my son has happened without anyone providing therapy. He did it for himself. So the reason he needed it before we simply because he was so anxious and stressed that he needed to sleep with someone.

[littleG]

Hi Mt McKinley

 

Spot on! I have had to learn to read my son like a barometer. When the sleeping gets to be too much of an issue along with all the ###### that I have to put up with from him after school, I just take him out for a couple of days and let him chill.

 

I let him know why I am doing it because, he needs it to recover, and we share the recovery period. It bonds us, keeps me sane and restores his faith that I least recognise what he is going through, even if I don't fully understand.

 

A couple of days of schools is usually enough to restore that delicate balance. I know that strictly speaking this probably not "legal" but there again, if it keeps my son at school in the long run and helps him to cope, who is to judge?

 

I will you well.

 

x

[lsw146]

Hi, I haven't read the whole of this thread as it was making me mad. Schools should listen to parents! I am sick of hearing that my DD's problems aren't severe enough.

Anyway my husband is a brilliant Chair of Governors and he suggests that if your head teacher isn't listening to you, you should deliver a private and confidential letter via the school, adressed to the Chair outlining your problems and what help you would like. Of course there are budget constraints but they have a legal obligation to 'duty of care'. he also suggests the letter is carefully worded to show that looking into your son's case is a learning opportunity that will be of benefit to the whole school as there us clearly a gap in understanding. If you prefer you can request a meeting but the head may have to be there.

Good luck and keep stamping your feet

[littleG]

Hi, I haven't read the whole of this thread as it was making me mad. Schools should listen to parents! I am sick of hearing that my DD's problems aren't severe enough.

Anyway my husband is a brilliant Chair of Governors and he suggests that if your head teacher isn't listening to you, you should deliver a private and confidential letter via the school, adressed to the Chair outlining your problems and what help you would like. Of course there are budget constraints but they have a legal obligation to 'duty of care'. he also suggests the letter is carefully worded to show that looking into your son's case is a learning opportunity that will be of benefit to the whole school as there us clearly a gap in understanding. If you prefer you can request a meeting but the head may have to be there.

Good luck and keep stamping your feet

 

We have made informal complaints, tried to keep it generic ie not about staff but policies, we have had meetings where it is like listening to a worn out record played by the school. We eventually made a formal complaint and offered to come and meet with the Governors to discuss our concerns in more detail. Within 4 days we had a letter back from the Chair of Governors saying that the Governors had "challenged" the staff and the Governors were satisfied that all was well and that basically, again, the problem was me as a parent. The letter did not invite any further correspondence and firmly closed the matter. We have changed schools but I am not happy that other children are still suffering due to ignorance by the school.

 

Thanks for replying.

[Sally44]

Maybe my experience will help you. This is what we did.

 

My son was vomitting in school and regularly being sent home for 48 hours. Once out of the school environment he was okay. No sickness, no temperature etc. He would happily eat and travel in the car and not be sick.

 

So start keeping a daily diary of events.

 

I went to my GP and told them my son was vomitting prior to, travelling to, and in school and was missing alot of school because the policy was that every child had to be kept at home for 48 hours. I asked that this vomitting was investigated to see if there was a medical cause.

 

We were referred to the childrens hospital, and the consultant's opinion was that it was related to anxiety and stress and he put that in his letter to the GP.

 

I saw the GP and asked her to write a letter for me to take into school to say that the vomitting was most likely due to anxieity, which the school should investigate, and that he should not be sent home every time he is sick just once in school.

 

I took that into school and they ignored it.

 

[in the meantime, the Consultant at the childrens' hospital wrote to one of our GPs and said that as my son had an annual review of his Statement, could the GP review my son and write a letter saying that the anxiety was due to vomitting. The GP wrote back to the consultant saying that he had never been asked to do something like this before, and that frankly, those seeing him vomitting on a regular basis should already know it was anxiety. (I have only got hold of this correspondence by seeking a Data Protection Act request to view all information on file about my son)]. The Annual Review did not include his episodes of vomitting as being due to anxiety even though I asked that it was included.

 

I made an appointment to see the Developmental Paediatrician who had diagnosed my son and I told her about all his behaviours at home that I felt were due to him not coping in school. the DP made a referal to Clinical Psychology.

 

In the meantime my son had deteriorated and was threatening suicide.

 

We had a meeting with Clinical Psychology and they were so concerned they did an immediate referal to CAHMS. But CP did confirm that my son had no emotional literacy, could not name his emotions or talk about them and was not generalising skills in school. They confirmed his behaviour was "typical of children who are anxious and distressed and not coping in mainstream school."

 

We were referred to CAHMS and the consultant psychiatrist has written a brilliant letter about his difficulties and has placed the blame firmly at the door of education and lack of OT input.

 

I have heard alot of negative things about CP and CAHMS. Mine has been good. When any professional is seeking a referal I ALWAYS make the request that they are referred to a professional that has experience of ASDs and his other diagnoses. That helps.

 

We are now going to tribunal and seeking an alternative placement. Don't know if we'll win the placement, but the Statement will definately be tightened up and if the LEA cannot provide the therapy and professional input he needs, then they will have to fund the placement of my choice.

 

It has taken years to get there. But you need to follow it through to get all the evidence that your sons needs the things you are asking for.

 

I also have letters from those working in "health" saying that they cannot tell "education" how to use their resources, although education should base their decisions on the information provided by health. This is also useful because it shows that there is a separation between the two and often the child's needs are not met because of that.

 

You need to prove that professionals involved are not meeting and working jointly to put together the educational plan for your child. That is usually easy to do as no-one sees or communicates with anyone else. This all works in your favour.

 

Raise concerns with school and if nothing happens, write to them and ask them what steps they took after you told them of your concerns. That is all evidence.

 

Get the Parent Partnership or someone else to take notes of all meetings. Or ask that you record meetings and type up the minutes yourself.

 

Good luck everyone.

[smartloobylou]

i feel like i could have written that myself!

 

I have 5 boys - my son was diagnosed with dyslexia jan 2010 when he was 8 and ASD in november 2010 when he was 9. It was only last year (4/5) that everything just seemed to start detiorating. School say they see none of the behaviours and my son admits he hides most of it at school as he doesnt want his friend to think he is 'mad.' He does do his physical repetitive tics at school, but not his verbal ones. When he's at home its like an explosion, there are tears, tantrums, stacks of OCD behaviour, tics, outbursts etc. I am exhausted after having him here solidly for the half term week. But he loves the structure of school, the routine, etc. He goes to an independant school who are hopeless with SEN but hes coping (just) due to the small class sizes. I just wanted to say you are not alone. Ive been refused DLA (asking for reconsideration but they want to contact the school who dont see the problem) so will probably have to appeal, and i have a meeting on weds after requesting a SEN from the LA. Ive been given 2 days notice of this meeting and i will be given 5 minutes to summarise why my son needs a SEN. arrggghhhh! x Louise

[dm2010]

i feel like i could have written that myself!

 

I have 5 boys - my son was diagnosed with dyslexia jan 2010 when he was 8 and ASD in november 2010 when he was 9. It was only last year (4/5) that everything just seemed to start detiorating. School say they see none of the behaviours and my son admits he hides most of it at school as he doesnt want his friend to think he is 'mad.' He does do his physical repetitive tics at school, but not his verbal ones. When he's at home its like an explosion, there are tears, tantrums, stacks of OCD behaviour, tics, outbursts etc. I am exhausted after having him here solidly for the half term week. But he loves the structure of school, the routine, etc. He goes to an independant school who are hopeless with SEN but hes coping (just) due to the small class sizes. I just wanted to say you are not alone. Ive been refused DLA (asking for reconsideration but they want to contact the school who dont see the problem) so will probably have to appeal, and i have a meeting on weds after requesting a SEN from the LA. Ive been given 2 days notice of this meeting and i will be given 5 minutes to summarise why my son needs a SEN. arrggghhhh! x Louise

 

 

If your son can suppress the symptoms of ASD at school, that is impressive indeed. A 'Triumph Of The Will' if you like. It's a level of self awareness - and self control - I didn't have when I was the same age.

 

Rather than be concerned, in your place I would be encouraged by what is happening. Your son has made a shrewd assessment of his school environment and knows he has to work with them for future success. Thus he is willing to put on a pretty stressful act to achieve this. Don't underestimate his skill or achievement here. The downside is that all the stress has to go somewhere and you're the nearest target.

 

Just think what he will achieve if he is as smart and determined in his future career as he is now.

[dm2010]

And one more thing -

 

Limiting criticism to policies won't work since most school policies are much the same, they legally have to be. It is individuals who make or break a school experience for a child.

 

If an individual teacher is guilty of unacceptable behaviour and you have the evidence to back it up, then say so - first verbally, then in writing. It will be unpleasant but confronting and dealing with unacceptable behaviour is never a fun activity. Nor should it be.

 

You will get a reputation within the school for naming and shaming poor professional behaviour from any teacher. And what's so wrong with that, as long as you also endorse good practice where you find it.