Desperately worried and stressed...

[HarijukuLover]

I'm a name changer (I regularly name change on MN to protect my identity for various reasons) ...some of you will guess who I am. Apologies for the epic rant in advance.

Brief background - DS is 5 and has AS. He is coming to the end of reception in the school he has been at for two years (one year of nursery + one yr reception). He is on SA+ since nursery, a Stat Ass was done a few weeks back and I have been told verbally by the LEA that a proposed statement is imminent. It looks like the statement will propose a full time 1-2-1 LSA. He has had full time 1-2-1 since Jan (cobbled together by TAs) and a full time 1-2-1 LSA has been funded by contingency money from an agency for the last six weeks.

In short, he is struggling severely with school. Not a day goes by that he isn't seriously disruptive or violent towards staff and classmates. His new trick is attempting to scale the 12 foot fence and escape from school . He has bitten his 'new' LSA and stabbed her with a pencil today. The school are struggling badly to cope with him. He has been excluded many times this term, and despite a wealth of resources to support him - fortnightly SALT and CAMHS appts, ASD advisory teachers in school to train staff, all sorts of input from Ed Psych, OT, outreach staff from the local special school etc - it isn't working.

I am geared up to reject the proposed statement when it comes through (deadline is end of the monthly have been told verbally it will probably arrive well before that), because we (me and DH) are pretty much decided that we want to take him out of the school and get the LEA to fund a place at a MS school with a small ASD unit (lovely place).

But I am running out of steam . Battling on behalf of DS has been a pretty much constant thing since he was a toddler. I am struggling to cope with my other responsibilities in life and I am sick in the pit of my stomach about having to now fight yet again to get my son the support he needs.

I know there are just a few weeks left until the end of term, but I just cannot face another day of this. The school ring me to ask me to pick him up. Or at home time, I have to stay behind to hear the gory details of DS's 'bad' day. And DS seems increasingly stressed. It is almost as if school poisons him. He becomes so tense and angry the minute he is arrives. I feel like I am failing him every morning that I pack him off there. Bit what can I do? I really feel like keeping him at home now and home schooling him until we can get this ASD unit place sorted for him. but would this be a terrible move?

God, I am so stressed with it all. Every day is a struggle.

Thanks for reading if you got this far.

and a very un MN ((((HUG)))). This must be so difficult - my DS has ASD and has been managed well in a mainstream school but can be disruptive. I am fortunate in that the SENCO has been excellent and have had virtually no calls. It sounds like your DS's school have a problem because if a full time LSA is already in place then you should not be getting phone calls on an almost daily basis. It's all about inclusion or should be and they should be trying to manage him.

I think that as there are only a few weeks left it would be worth saying that you will home school him until a place is found at the school he needs. You are not denying him an education but taking the education into a place where he feels comfortable.

The school with the AS support unit sounds fabulous and I so hope you get your DS in there.

Very sorry to hear about all your troubles. It is so worrying, and we all feel so helpless.

Homeschooling sounds like a good idea to me. He is obviously miserable at school....

HarijukuLover, you have a right to name the school with base as your preferred education for your DS in part 4 of the statement, although the LA may refuse, and you would then battle it out.

Have you told the LA you would like the MS + ASD base?

Thanks for all your replies.

Spoke to the LEA this morning and they have issued the statement. It went out in the post on the 29th so I should have it today or tomorrow, which is good news I suppose.

So - decided to keep DS off school today. Left a message for the headteacher saying that I needed to discuss the reasons for his absence with her, then emailed her and the SENCo asking for a meeting next week tp discuss DS's future.

My questions now is this - should I stamp my feet at this point and actually properly withdraw DS from school on the grounds that this sort of provision (mainstream with a 1:1 LSA) isn't working (it isn't)? Will this strengthen my case to the LEA that ONLY the other school (MS school with an ASD unit) can provide an adequate education for my DS (which seems to be true)? Or am I just shooting myself in the foot? Should I keep him officially enrolled at school and just keep him at home until the end of term, just in case this other school place doesnt work out?

Confused.

Probably keep him registered at this school and keep him at home while you do battle with LA. They will have to decide whether there is a place for him at the school you want and as it is likely to be oversubscribed there could be a time lapse. Unfortunately you are unlikely to be the only one in this position in your LA.
So sorry to hear of all you are going through.

Thanks imahappycamper.

I have spoken to the head of the school we want DS to go to. She said (off the record) that technically they are always full, but that a place will 'magically materialise' if parents push hard enough. She told us to be ready for a fight and not to give up. She was also extremely supportive of our case, which is a good sign.

It may not happen by the start of next term, though, you are right. There are no SENDIST Tribunals in August, so if had to fight the LEA it wouldn't even commence until early Sept. Bugger.

You are prob right, though. Keep him on roll. What justification do I use for keeping DS at home, then?

That the school is not meeting his needs and he needs to be somewhere that can.

Aww hun, I really feel for you as I went through a very similar process with my son.

You've been offered some very good advice here already but I just wanted to add that, although the fight is extremely draining, demoralising and there is many times when you feel like giving up, it is soooo worth it in the end when you see your child in a school in which they're happy and you know their needs are being met.

I had to go to my local MP to get the school I wanted for my son but I got there (in the end) and both he and I have never been happier! Good luck.

I had similar, kept ds at home for half a term until a special school made room for him. In our case the school excluded him for 2 weeks and I just never sent him back, saying it wasn't safe for him there. The school agreed so it wasn't a problem from their point of view. My son was very stressed going to that school and he virtually changed overnight when I stopped sending him.

Blimey, that sounds soo stressful [understatement]. Would your GP be willing to write a sicknote for your DS? I may be totally wrong, but my thinking is it could add some more weight to your ASD unit case and/or doesn't let the LEA/school off the hook IYSWIM.

I second going to your GP, mine wrote a great letter explaining why ds was getting stressed at school and how it wasn't safe for him. He didn't mind writing it at all, I don't think we actually had to use it in the end but it was good to have - it made me feel someone was on my side if nothing else.

Hi,

You may have guessed that I'm not a mum by the name BUT I am a SEN TA. Like many others I'm really sorry to hear of your situation.

I specialise in children with behavioural problems and agree with one of the respondants that if your child has 1-1 support you should not be hearing from the school unless it is a real emergency or extreme situation.

I really do understand the stress and pressure that can be placed on support staff - but it is their role to support. I am regularly punched, kicked, assaulted etc. The job is 90% hell but 10% pure gold and thats why I do it.

Some questions:-

Exactly what is his diagnosis?
Have regular observations been carried out to see if there is any pattern to the behaviour and what the triggers may be?
Does the LSA fully understand his/her diagnosis?
Does the LSA have fallback support? Often a quick change of face can rapidly diffuse a situation, at which point the LSA can step back in.
Has the LSA got experience of your childs disorder?
Are they qualified? At least to NVQ Level 2.

Quite often extreme behaviour displayed by a young child is quite a shock to any support staff that are not used to it or do not have previous experience of this kind of behavior - normal behavioural management techniques do not always work. I've made the same mistakes myself when I first started out. As an SEN TA you have to be adaptable, flexible, be willing to compromise (thats not the same as giving in!), be thick skinned and have the patience of a saint!

I am a firm believer in the theory that there is always a reason behind a childs behaviour - it may not always be obvious, but there is always a reason. This is where observations are essential to build up a picture of a childs behaviour.

Most importantly DON'T GIVE UP!!!

Anything worthwhile in life is worth fighting for and you and your child are entitled support.

Kind regards

Steve

Hi Steve - I'm Harijuku - have just name changed (am a constant name changer!).

Thanks for your input -really interesting to hear it from a TA's perspective.

In answer to your questions:

DS's diagnosis is Asperger's Syndrome.

He has been observed by CAMHS, an Ed Psych and a SALT at school, and we keep a home/school diary to try to identify triggers to his behaviour. The sad fact is that school seems to be the trigger! I mean, all of it - the class sizes, the noise, the requirement that he follows rules/authority, but then also the free play philosophy at reception level - none of it seems to suit him. He hates being told what to do, he hates his visual timetable, he hates his 1:1 TA. He seems to be in a constant state of anxiety from the moment he walks through the door

I don't know what the LSA's training is. She She comes from an agency and has 'experience of working with children ASD'. She talks the talk and seems to have an understanding of AS, but it's hard to know what she really understands about our DS. She is nice enough, and to be fair, her approach is an improvement on anything else the school have offered, but DS abhors having a 1:1. He hates being watched/shadowed and singled out as different. He regularly tries to escape from her or attacks her .

The LSA does have fallback support. There are two floating learning mentors in the school, and a class TA who sometimes has input (she was previously supporting DS 1:1 about 50% of the time). The LMs an the class TA are all really nice people, but they don't really have the training or experience to deal with DS. All of them are quite frightened of his violent outbursts and the Headteacher has contacted their Union and all sorts re: DS attacking staff

My gut feeling is that full time 1:1 support in a mainstream school (although we have spent months fighting for it) isn't actually appropriate for our DS. So...we are hoping to secure a place at a mainstream school with a ASD unit (two classes of six children with AS or HFA; one teacher and three TAs per class - their philosophy is to gradually integrate children back into mainstream at their own pace, in most cases by Year 5/6). I just hope above all hopes that this will suit him better, because I really don't know where to go from there...

Hi,

Sorry to hear the school is in contact with the Union - that sor of behaviour comes with the territory!

Just a few more questions:-

How old is DS?
Did he attend pre-school?
Does he take any medication (Ritalin)?
Does he have access to a 'quiet room' where he can feel more relaxed or do his work?

and sorry if this sounds very personal,

Are you his natural birth mother?
Does he have access to drinks at any time? Children with AS often have 'thirst' issues.

Does he have access to small, but frequent snacks during the day? AS AS children often have hunger issues.

Much of the behaviours you have described are a result of low self esteem, frustration or a desire to get away from a stressfull situation.

Most children with AS normally display an average or above average level of intelligence. AS is a double edged sword - these children arn't 'thick' but often get behind as they miss out on the learing. Conversely, they may find the task not challenging enough!

All this adds to their frustration and levels of anxiety.

His visual time table? Its not critical he has it, so does he need it?

The classroom is noisy - give him a choice, do you want to stay inclass or would you prefer to work at the quiet table / in the quiet room? Give him the opportunity to go to the quiet room if he feels anxious. Some AS children like to have their own space / desk where they can work more independantly and there is less 'socialising' anxieties.

Use indirect approaches - don't tell him what he has to do, explain to him that this is what the other children are doing? Would he like you to explain anything to him or does he understand the task.

TA's often have the urge to stick to a child like it would die if you were not there next to them. If he is happy and not causing any disruption - leave him. If he wants help, give him the opportunity to ask for that help - he may actually understand what is required of him. Otherwise stand well back and let him get on with.

In fact, assisting another child often is the trigger for them to ask you for assistance. The key behind one to one support is often knowing when to step back - right back.

Allo whim to do something else whilst listening in class, such as reading a book, drawing etc. Children with AS can often be very good multitaskers - they can listen and learn and doing something else often helps them with distraction issues.

Children with AS often believe they have a superior knowledge, so telling them they don't know something or that they are wrong will cause conflict and stress, followed by avoidence behaviours. Give them the time and the opportunity for them to decide that they don't know or unsure of something - let them come to you.

Hope this helps. If I can help in any other way just let me know.

Kind regards

Steve

It is very common for children with AS to be jointly diagnosed with ADHD and all that entails.

Again - keep going! Help is out there and there are people out there who want to help - it may just take a bit more time so just keep pushing.

Hi again Steve. To answer your questions:

DS is 5 yrs old. He attended the nursery at this school prior to going into reception, and before that attended a nursery half days for a year, so he has been in a childcare/educational setting for three years now.

He doesn't take any meds. The Paed, CAMHS etc all agree that Ritalin probably not appropriate, because his behaviour is only at this extreme level in a school setting. He changes within 20 mins of being at home, and is not like this at weekends / in holidays (he still has a very 'Asperger's' type profile, but the violent/aggressive behaviour virtually disappears). He has been assessed over a long period of time for ADHD and a multi-disciplinary team agreed that this wasnt an appropriate diagnosis for him.

He does have a 'cool out' area in a kind of conservatory between his classroom and the playground, which they make a lot of use of. It doesn't seem to have any lasting effect, though. No lessons are learned, iyswim.

And yes, I am his natural mother.

Interesting about the drinks - I don't think he drinks enough at school and have raised this several times with him. He definitely gets cranky and more prone to poor behaviour when he is dehydrated. The school says that he has 'access to water throughout the day', but without sounding overly precious, I really he think he needs to be reminded to drink it reguarly. Now he has a 1:1 LSA, I don't think this is too much to ask, but I am still not confident it is happening.

He doesn't have access to snacks at the moment, no. There are also major issues around lunchtimes, as he finds them extremely stressful which means he doesn't always manage to eat much.

When you say' Much of the behaviours you have described are a result of low self esteem, frustration or a desire to get away from a stressfull situation' - I know it is true . He is incredibly frustrated almost all of the time at school, and it breaks my heart to think that he lives such huge chunks of his life in such a constant state of anxiety.

Most children with AS normally display an average or above average level of intelligence. AS is a double edged sword - these children aren't 'thick' but often get behind as they miss out on the learing. Conversely, they may find the task not challenging enough!

Re: his visual timetable - I personally think it is a crock of shit. It just seems like a generic SALT's reccommendation 'visual timetables always work with ASD kids' etc. He abhors it and I think it is highly patronising (especially since the school are forever trying to get us to implement one at home - which I cannot see the need for).

I really like your idea about 'indirect approaches'. I instinctively do this at home quite a lot.

I have gone on too long! Thanks for all your input. It is really very helpful to hear it from a TA's side and to get ideas from someone outside of the situation but with relevant knowledge and experience. Many thanks.

Sorry - seemt o have mistakenly cut a big chunk of my reply out, so it doesnt make sense! Doh!

Hi Reasonable

I would be so tempted to keep ds off school not least because I'd be worried about him becoming intractably school phobic. He sounds very bright and will probably learn very well from you plus tv and the web.

Would be good if you could get the school on-side to support your application to the unit? Perhaps arrange a meeting where you can say that much as you appreciate their efforts and it's not their fault etc but it isn't working. If you can get them to be non-defensive you might just get them on-side.

My ds starts MS school in september and I'm going to give it one year to see if he/they can cope before reviewing the options. In our case DS has other delays as well as ASD which actually makes him easier to manage for now but I know things can change so quickly.

My philosphy is that my ds will get more out of life if he becomes as far as possible a well-adjusted easy-going person so that is at least as important as learning reading and writing etc.
hth

Lots and lots of good advice on this thread.

I wish I could scoop you both up and get you out of it. I will tell you it fades; I have 2 asd kids myself and tbh the worst times peak: and theya re often linked to times of oficial forms filling or when reports arer received. My experience is that it does lessen a little as time goes by, whether accceptance or otherwise I don't know.

What I can offer if you want to email me is the collection of powerpints and info from my ASD MA course; you might find ideas in tehre, who knows? My email is peaches and cream 04 at bt internet . com (no spaces)

I would aslso recommend SOS ! SEN; a website with a helpline that I found did give me the energy abck to get ds3 the place he really needed.

Oh and in all onesty I woudl pull him for the next few weeks too; as well as the existing issues the alst 2 weeks of school can be a nightamre of odd bits and changes, probably not worth the stress.

I agree with Sancti. The last few weeks of term are quite likely to be difficult. Ask the school for their co operation. Our DS often has part time school (at our suggestion) for the end of the Christmas and summer terms because the stress of the whole routine disappearing and the social stress, particularly at Christmas, is just too much and his behaviour deteriorates to the point where if we didn't take him out he would end up being excluded.(He is Year 10 BTW).
Asking your GP for a letter is a good idea.
As I remember it when reports for parents were done the attendance figures went up to the end of May (no idea why) so it won't affect his records or the school's if he is not there.

TheCrunchySide - yes, have arranged a meeting later in the weekw ith the Head and SENCO and I do plan to say 'despite your best efforts, it's not working out'. To be honest, I think they probably will support our application to the ASD unit. The SENCo was actually the one who told me about it (hint, hint?) . I also totally hear what you're saying about a welladjusted, happy child being more important than all the other stuff. This is so much what I want for my DS and a huge amount of my stress is over seeing him so stressed. I just keep thinking 'He is only five. His life shouldnt be like this' .

SanctiMoany - thanks so much for the offer! I will take you up on that. I have actually looked into doing an MA in Autism myself (I work in education/training).

iamahappycamper - he has gone in today (simply because I had an appointment this morning with a solicitor regarding all of this and couldn't bring him with me!), but I am keeping him at home for the rest of the week. I had a very brief talk to the Head and just said I think the situation has gotten so bad that he is suffering stress and needs a few days rest from it all. I was non-committal about what would happen next week and week after. She seemed quite relieved and happy to play it by ear. Hmmm.

I am also raging a bit this morning because I looked over his home-school record book this morning (which I had forgotten to do o Friday) and the message from his LSA boiled my blood. 'Please could you talk to your son about his behaviour, as it is escalating and he is very difficult to deal with'. No shit, sherlock! What am I supposed to say? He has been having 'bad days' every day for a year and he is FIVE. Ach.

Thanks for all the support and advice everyone x

Oh dear. Does the LSA think "talking to him" will make any difference? It never did with my DS. We used to go over behaviour incidents with him but it didn't prevent him doing the same thing again. Goes with the territory I am afraid.