DESPERATE FOR ADVICE REGARDING SCHOOL

[cmuir]

Hi folks

 

My son is 10.5 and has AS. He's in a mainstream school with 15 hours LA support. R has always been challenging in varying degrees, both at home and in school. Over the past year I'd say that school are seeing more and more of the extremely challenging behaviour that hubby and I see. R's HT of 5 years left and a temp HT was in post, with no great issues (though it wasn't easy). However, new HT was appointed 6 months ago and kiddo is like a different boy. He's very down, unable to make decisions, very aggressive and very abusive - this is the case both a home and in school. Suddenly, school have decided it's a problem (in fairness, new HT has rightly decided it's a problem), and called in a challenging behaviour specialist. Things have escalated massively, and R is even more miserable, etc etc. I'm extremely frustrated in that the warning signs have always been there. R has always been challenging and school have seen more than a few snippets over the years. I feel strongly that issues should have been addressed long ago, however, because he's a year away from high school, suddenly his behaviour is no longer acceptable. Don't get me wrong, his behaviour is never acceptable, however, I'm constantly trying to tell them that we need to look for patterns of behaviour (there are patterns), why suddenly things worsened upon new HT's appointment i.e. new routine, etc etc. Instead they're looking at reward systems, etc - I feel very much like they're attempting to treat the symptoms, but not the cause, and I'm not getting any answers, staff aren't reading notes/letters/emails that I've prepared. Feeling very frustrated and hate taking my son to school knowing how miserable he is. He self harms, says he doesn't want to go on living, etc and so he's being seen by CAMHS again. Again, frustration is that this isn't anything new (though it is getting more severe), and it feels very much like professionals are pointing the finger in my direction e.g. one asked why we don't have sensory aids for headbanging/hitting himself, etc. - told her that I've never hidden fact that this happens and repeatedly asked for help, but got none! Grrrrrrrrrrrrrrrrrrr! CAMHS feel that kiddo is suffering from secondary depression. He's 3 weeks away from school camp and school still won't make a decision one way or another about whether he's going. I personally don't think he's up to it, but I really want the decision to be the school's - they need to decide whether they can cope and support him, but they're saying they think if it works it'll be good for his self-esteem, etc. All of which I agree with, but I think they want me to say he's not going (I want them to say that!). Meanwhile, kiddo was excluded two weeks ago and HT was very reluctant to provide a letter of exclusion. Just feels like the extent of his issues have been covered up for so long. The relationship between myself and school isn't great in that I've expressed that I feel he's been consistently let down by lack of ASD specific support (SFL teacher says ASD specific support is "learning assistant", but won't/can't ellaborate). Meetings feel quite hostile, etc. Incidentally, they asked R to attend a meeting with 6/7 adults present and meant he'd miss his favourite class (PE), despite me voicing this. Grrrrrrrrrrrrrrr, once again!

 

Sorry for rant, but any advice would be gratefully received.

[Sally44]

Are you keeping a diary of what your son says and does? We did that with our son and he was repeatedly talking about school and how bad he felt and that he wanted to kill himself etc. So they had to listen to what he was saying and they couldn't blame us when all he was talking about was school. Again if you have written into school and professionals before you should have all that as evidence in a file somewhere.

 

But you have to think what is your aim. If this is mainstream he obviously is not coping. What are your options for secondary or for an immediate move now to a school that continues through to secondary.

 

Do you have ASD specific schools in your area?

 

I would push CAHMS to put in writing that he has depression, and what is the cause of that depression. Also that he has and is still self harming. [Put all this in writing to CAHMS and post it before the next appointment]. In your letter also ask them how much force you should use to get your child into school. I had got to a stage where I was really uncomfortable with what I had to do to get him in the taxi to school, and often he vomitted and had to be collected anyway. But you need CAHMS advice in writing. They wrote to me stating that I should only use gentle encouragement because his self harming was so serious and his anxiety was so high. But the point is, what do you do then if he does not go into school. You have to have some alternative in mind that you are working towards.

 

You could involve social services for them to carry out a core assessment [or Scottish equivalent]. I don't know if there are boarding schools where he could spend some of the week or all of the week there.

 

If his current school have not done anything, and secondary school equivalent is probably going to be similar. You already know the issues that cause the problems ie. large numbers of people, changing teachers/classroom/peers etc.

 

Because there is no point you continually struggling in a placement that is never going to either recognise or meet his needs.

 

It also sounds like there is no joint planning and no cohesive delivery of anything. Again that is very typical of a mainstream school with professionals popping in now and then, but never meeting eachother or the staff or the parents.

 

So what are your other schooling options?

And can you manage if he is out of school due to refusal and anxiety/depression?

 

I also wanted to add that our experience was that nothing was every provided until the crisis happened. So I had talked to all the professionals and school about his anxiety for years. But professionals only came together when he refused school and I had CAHMS advice not to use physical force. Then it became an emergency and then they started meeting and talking to eachother. So I don't think you will get provision for a need until he's refused school and been out of school for a while.

 

It is the same with all the professional departments. It is always crisis management and trying to shut the barn door after the horse has bolted. So it is sometimes detrimental to keep struggling on. Sometimes you need to give in and let the xxxxx hit the fan. Otherwise you will just drive yourself into ill health trying to meet the needs of your child on your own with little or no help from anyone.

Edited September 11, 2012 by Sally44

[cmuir]

Hi Sally

 

Many thanks for your reply.

 

Yup, you've summed things up word-for-word what I've said. Sadly, it seems that you have to hit crisis point/rock bottom before anything happens. There's no joined up thinking, meanwhile these kids suffer and so do their families.

[Suze]

where is he going next yr in yr7 ??.........does he have a specialist placement?

[Sally44]

If things are deteriorating significantly, it maybe worth contacting DLA to see if the level of personal care or mobility can be increased. Because another thing I have found is that once you have taken the next rung up on the ladder regarding schooling or therapy or DLA, then all other agencies seem to fall in line with that.

 

I am just applying to DLA myself for increased care and mobility, and I know that his Statement and his school placement will play a major role in confirming his level of needs. If my son was still mainstream in his previous school where they kept saying they had 'no concerns', them i'm sure this application would be turned down if the DLA people had contacted them.

 

But do consider how you can take a step back and not be so stressed about it, and if he refuses he refuses, or if you consider he is not well enough don't force him in. But you need the paper trial of evidence from CAHMS to back that up otherwise the EWO could get involved.

 

Once he is out of school and you have in writing that it is due to a medical condition [such as AS or Anxiety or Depression], then I believe the LA does have some duties regarding education for those children.

 

And him being out of school for some time might make it possible for him to have a different kind of placement [if that is what is needed], or additional support.

 

But at some point you have to burn your bridges and decide if mainstream is realistic or not. If it is damaging your son, or you, or the wider family then look at other options. Remaining mainstream is not the be all and end all.

[cmuir]

Hi

 

I'm quite clear that mainstream is not meeting my son's needs, and it is now having an detrimental effect on his mental health. Kiddo has been seen by CAMHS last week and we've got a home visit scheduled for tomorrow. Last week, R was very clear in expressing how he feels about school and it was very obvious for all to see his stress levels and depth of feeling. I'm currently awaiting that report, but if it doesn't speciifically state school is the cause of his deterioriation and depression (or words to that effect), then I'll fight tooth and nail to ensure it's documented. Everything seems to be happening at once because I've just had to fill out a DLA form. I have a very supportive section 23 social work assessment, letter of exclusion, and a few others reports which clearly show a deterioration and how challenging R can be. So, that's something else to worry about - I'm really hoping we continue to receive a high level of care and low rate mobility (R has dyspraxia, coupled with behavioural and poor concentration, etc, which affects R's road sense). I am worried however that because I've been ruffling feathers with the school, etc that they'll try and play things down. I'll just have to wait and see - my main concern is with kiddo and how he's feeling. I've literally just sent a letter to all (Ed Psych, CAMHS, etc) expressing my concerns with some of the points outlined by Sally (many thanks).

 

We're in Scotland, so R will be going into first year of high school in the next academic year. Everyone is supporting (or saying they are) a move to a school with a special unit. I feel this is a compromise, as they wouldn't support previous requests for an ASD special school. If I'm being honest, I don't think it'll work, but once again feel forced to sit back and show that it won't work before anyone will do anything. I've asked in writing to see what's been submitted for the placing requests by professionals.

 

Thanks for your replies.

[Sally44]

A specialist unit may work IF teaching goes on in the unit.

That is why it is so important to get in writing what the cause of the anxiety/depression/challenging behaviour it.

 

We looked at a couple of schools with units, and we kept finding that the unit was really like the 'form classroom', and that children were fed across to mainstream lessons. Well my son could not cope mainstream, so attempting to feed him across for lessons was pointless.

 

When you get reports saying that he needs "small group teaching of no more than 8 pupils", and stating that his anxiety is due to not coping in large classroom environments, or due to the mainstream teaching approach etc, then you can only go down the route of small classes, specialist teachers, similar peer group, therapy team on site etc.

 

If he is refusing school he is voting with his own feet. That is what got me so frustrated and upset. He was telling us, and everyone that he could not take it anymore. Those were his exact words. So I asked them when they were going to listen to what he was telling them.

 

That is also why it is very important to write down everything they say and do regarding school.

 

Do press CAHMS and Clinical Psychology [if he is under both], to explain what they think is the cause of his anxiety/depression/challenging behaviour. Mine said in a letter that it was "typical of a child not coping in school" and that "there is lots of evidence of this Jeckyl and Hide behaviour where children try to keep a lid on their worries and fears until they get into the home environment."

 

But I do think you need to come to that decision, burn your bridges, and not accept any further offers of support etc in mainstream. Because they will try to keep him there if they can because there simply are not enough places in special schools for all the children that need them.

 

And it would also be very worrying if his challenging behaviour increased, because no-one is listening to what he says, and in a couple of years time the school were unable to cope and the LA suggested and special school for children with behavoural and emotional difficulties - which is not appropriate as those children have usually had some trauma/neglect/abuse in their background and they are not necessarily autistic.