It's all gone pear shaped again

[Flora]

Bill has been on half days since the start of year 7. Things seemed to be ok until around December when he started to become upset about school again. They've got worse since then and today when I picked him up he was in a state... he got increasingly upset and angry on the way home and ended up by having the first melt down in quite a while. He said he can't stand the noise, the swearing, that he can't understand a word anybody says... that the teachers might as well be speaking Japanese (his words). His school work has gone from being above average in year 4 to average, to below average and now he's actually regressing. He used to have above average spelling ability and could spell just about anything... he is now spelling the most basic words wrong... eg.. in some work recently he spelt the word me as mee, the worde moody as moodee... and other really basic spelling errors... His writing which was never good has regressed to the way it was when he was about 5. Has anyone else experienced academic ability regression in their child???

 

Anyway, I got home and rang the child psychiatrist he is under.... was able to get her on the phone straight away and she told me to keep him off school. I've rang the school and the LEA to explain why he will not be going back for now.

 

He is so much more relaxed now since I told him he doesn't have to go in... but he is still a bit nervy and jumpy.

 

It's all so worrying and there really is nothing else we can change in his present school setting. Like I said before he only goes for half days and has TA support throughout his time there... what more can they do to support him? I can't see a way forward without a statement and a special school placement. Or some other alternative means of education. I have investigated the idea of teaching myself but after the time he was at home at the end of primary when he was signed off sick I realised that I can't teach him... I feel completely useless with him... other than protecting him from the things that stress him out I don't feel any good.

 

Flora

[Bagpuss]

Flo <'> <'> <'>

[bid]

Have you thought about (re?)applying for a Stat Ass yourself?

 

It is very important that you get his consultant to write a letter to the school formally detailing that he is unfit to attend because of anxiety/depression. It would also be a good idea to get your GP to write a similar letter for the school, too.

 

You will then have a good platform to apply for a Stat Ass, because he is clearly unable to access the National Curriculum because of his severe and complex special needs.

 

I would also tell the school he needs to be seen by the EP asap. My son was seen at home when he was out of school...this shouldn't be a problem. You are perfectly entitled to ring the EP department at your LEA and explain your situation, too.

 

If your son is signed off as unfit to attend school on medical grounds, he is also legally entitled to home tuition by the LEA. Ask to be referred to their team that deals with this (it will be called something like 'Hospital and Home Education').

 

From our experience, we found that a similar situation to yours was instrumental in getting my son his Statement and special school place, although of course it was traumatic at the time.

 

Good luck! <'> <'>

 

Bidx

[Flora]

Thanks bid <'>

 

The CAMHS consultant has already (prior to this crisis) called a multi-agency meeting which is going to be next wednesday. She is going to tell them that he needs a stat assessment for special school placement. If they refuse to apply for stat assessment I will do it myself.

 

I will be speaking with the SENCO today and will request EP home visit.

 

I am going to go full out to get statement and right school.... I feel more confident to do that now than a year ago as they have exhausted everything available without a statement.

 

Flora

[annie]

<'> Flora <'> ,

 

Just wanted to let you know I'm thinking of you hun.

 

I agree with everything Bid has said. There comes a time when you have to say enough is enough, keeping your child in mainstream when they are not coping is so traumatic for everyone, especially the child. Bill is already more relaxed since knowing he doesn't have to go into school, Alex was the same. People underestimate the effects mainstream can have, not on all children obviously, but for some it is just too much .

 

Annie xx

<'>

[marshmallow]

<'> <'> <'> I hope you manage to get the support /placement Bill needs soon, it does sound as if the school he has been attending isn't the right place for him. I hope he feels less stressed soon <'> . As I think I've said before I think it is awful that a system is in place that allows children to fail before putting in the right support. Hope you're ok. Take care.

[Kathryn]

Hi Flora,

 

Sorry to hear that things haven't improved for Bill. I hope his stress levels will drop now that he's off school - I think you made the right decision.

 

The behaviour you describe sounds a lot like L when she was becoming increasingly anxious, particularly in the first half term of year 11 immediately before we took her out of school. She regressed in every area: I've already told you a bit about the language, her coordination got worse so that she couldn't or wouldn't write and when she had to, she wrote in large capital letters. It seemed as though she was losing cognitive skills - couldn't remember anything and it was particularly noticeable when we played a game of trivial pursuit - she just didn't seem able to process information as quickly. She also said she couldn't take in anything that teachers said to her. If she typed anything on the computer, it would be telegraphic - the grammatical words were often missing, past tense endings etc. which was unlike her. When she talked she d made strange word substitutions eg saying I've "painted" the toast instead of "buttered".

 

We had every kind of test done to check there was nothing more sinister going on in her brain because she seemed to be changing so much and I think my first post on the forum was a panicky one saying Help, what's going on?? It was only from Bid and others here whose children had experienced school stress that I began to understand what was happening.

 

Apart from the occasional blip, and the fact that she doesn't mask her ASD any more, her academic skills are much the same as they were before - even better as she isn't paralysed by anxiety all the time. There are still some coordination problems, and she still rarely writes, but this has improved. So I hope this gives you encouragement for the future.

 

Good luck with the multi agency meeting - it was a similar meeting that eventually got us our statutory assessment. (I videoed L so they could all see what she was like). The fact that Bill is out of school it should help to focus their minds. As you say, the school has put in all the support it can and that's not working - time for the next step. As our senco said to me, "we can change a lot of things but we can't change the basic school environment".

 

The right school place is worth fighting for. It didn't work out for us - because of L's age as we ran out of time, but Bill still has many good years ahead of him in a different kind of setting.

 

Home ed - don't feel bad; it's not for everybody. I admire those parents who do it, but I know I never could - the thought fills me with terror.

 

<'> <'>

 

K x

[oxgirl]

So sorry, Flora, that you're all going through this, it must be such a worry. It does sound like the school were doing all they could, but if our children can't manage then they just can't. I'm glad that he's feeling a bit better now that he hasn't got the pressure of knowing he has to go back there and struggle on, it must be such a strain for him.

 

Hope you get the right placement soon. <'> <'> <'>

 

~ Mel ~

[BusyLizzie100]

Hi flora,

 

Just wanted to add my <'> <'> <'>

Hope it works out soon.

[smiley]

Hi Flo' <'>

 

Sorry to hear things have gotten so bad for Bill .

 

Everything, everything crossed that the school help you with the statementing process and that you find the right place for him <'> . Just from my own personal experience - please do try to find a befriender (PP, NAS, IPSEA, Network 81......) now who can help you through the whole thing - it's difficult to go it alone, even with all the right evidence.

 

(Email/PM if you'd like a moochy through my statementing stuff if you think it will help.)

 

<'> <'>

[hev]

Home ed - don't feel bad; it's not for everybody. I admire those parents who do it, but I know I never could - the thought fills me with terror

 

i tried home ed,lasted about a week i took him to the london dungeons for a visit,thats about as far as i got

Edited March 14, 2007 by hev

[Flora]

Thanks everyone for your replies.

 

Bill is not so good.... He keeps bursting into tears and saying he can't go back to that school, that his life's a mess

 

I am absoluteley terrfied that I make a complete hash of things at this meeting on Wednesday. I keep having nightmare flash backs to the meetings I had after I'd applied for stat assessment over a year ago. The LEA and school united against me telling me that he didn't need a statement; he wouldn't get one, we hadn't explored every avenue, we hadn't given SA+ long enough etc etc, he didn't tick all the boxes to justify assessment blah blah.... I'm so scared that one year on we've tried all of these things and nothing has been sustainable enough to allow him to be able to attend school properly. I am worried that they will say he doesn't need a stat ass and that I will lose control of my emotions and mess everything up.

 

Since I last applied he's had a course of CBT with the OT; he's had regular input from the autism outreach service; he's been signed off sick twice; he's had nearly two whole terms on half days and modified timetable with TA support in nearly every lesson.... and yet he's still failing, he's still unhappy, he's still regressing accademically.

 

Sorry, just needed to get all that off my chest.

 

Flo' XX

[dolly]

Flora sending you loads of <'> <'> <'> <'> Hope wed goes ok for youx

[bid]

Flozza <'> <'>

 

Are you going to the meeting on your own, or can someone go with you?

 

You can do this, hun, I know you can <'> <'>

 

Bidxx

[Kathryn]

Since I last applied he's had a course of CBT with the OT; he's had regular input from the autism outreach service; he's been signed off sick twice; he's had nearly two whole terms on half days and modified timetable with TA support in nearly every lesson.... and yet he's still failing, he's still unhappy, he's still regressing accademically.

 

Sounds like all "relevant and purposeful measures" (as the COP puts it) have been tried for long enough and you're in a much stronger position than last year. It sounds as though there's plently of evidence to justify an assessment, even if you have to get the process underway yourself.

 

Good luck, will be thinking of you next week,

 

<'> <'>

 

K x

[Flora]

Thanks you guys <'>

 

bid.... Bill's dad is going to come to the meeting with me (I have briefed him and he agrees with everything I'm trying to achieve... he's a stubborn one which can be frustrating at times but in this case we are of the same mind so hopefully he'll be good to have on board).... Also there will be the consultant from CAMHS who is firmly of the opinion that Bill needs a statement and an alternative education setting to mainstream. So there is plenty of backup at the meeting which is an improvement on last time when I was on my own and sort of lost the plot due to sheer frustration of their dogmatic views that 'he is fine and dandy and doesn't need a statement'.

 

Katherine... it's awful that your LEA strung you along like that.... I'm determined that ours won't do this... If they won't agree to apply for a stat ass then I will be doing it myself immediately after the meeting...

 

I really don't know what sort of state I'd be in without the support, advice and information on this forum...

 

Flora xx

[annie]

<'> Flora <'>

 

You've certainly got lots of evidence that things aren't working out and you've got people at the meeting fighting with you. Just remember we're all right behind you too .

 

I'll be thinking of you hun.

 

Annie xx

<'>

Edited March 17, 2007 by annie

[smiley]

Thinking of you <'> <'> <'> <'> xxxxxxxxx

[pumpkinpie]

Hi Flora

It sounds to me like a lot has changed in the last 12 months and due to the speed of the meeting you have professionals who want to work with you.

 

You mention home ed but surely if he is off because he is ill and anxious you could get a home tutor after 15 days? I dont know if this has to be done through a doctors sick note?

You ( I THINK) would still need to have him on the school role tho?????

 

School sounds as if they have been really helpful so maybe when he is up to working they can send him work to do at home(I knowmhis health is the main thing).

 

 

regardless of what the professioanls say i would apply for the stat assessment yourself - i did even though they would have done it. By doing it yourself the lea has to act more expediently and keep to timescales. If the professioanls at the meeting do it it will take longer!

 

Good luck

[elun1]

Just wanted to send you some <'> <'> <'> A little while ago I was having some problems with ds's school and had to go in for a meeting I was dreading. I phoned the NAS Education line and chatted everything through with an advisor, it really did help, if only to get things clearer in my own head.

Elun xxx

[baddad]

Hi Flozza -

 

I'm late to this one (sorry <'> ), and not sure I've really got much to add to all the sound stuff above...

 

Scary as it is, I'm sure the 'regression' is exactly what's been highlighted here - HUGE stress factors impacting on just about every area of his processing and tripping him up... asking him to try and focus in an atmosphere that he finds totally intimidating is just not a possibility, and (perfectly naturally) that stress comes home with him too because the pressure to achieve is still there all the time he's got to go back into that environment...

 

The other thing that's almost certainly going on (and I'm sure you've already thought of it) is that whole year 7 thing, with huge changes emotionally/academically AND physically... All sorts of weird and wonderful chemicals whizzing around his system which by their very nature impact hugely on cognitive processing... It seems insane, really, that our whole educational system applies the fiercest academic pressures at the very point in development where they are most challenging For kids on the spectrum (or with any other sort of compromised 'central processor') the effects of those physiological changes are going to be far more widespread.

 

 

 

Very best with that meeting - I'll have everything crossed (Herrrrrrrrrrrnnnnnnnnnnnnnnnnnnnn!!!)

 

 

 

L&P

 

BD <'>

[Suze]

<'> oh Floz so sorry................everyone has already said what I wanted too and given great advice .It seems he,s overloaded, in all areas, stress, anxiety and sensory.My son also describes stuff like Bill does, and general background noise and chatter can be overwhelming.He sounds very audio sensitive.(I read a book by Olga Bogdashina about sensory overload in autism it realy opened my eyes and made alot of sense of my sons problems).I,m thinking of you I,m praying that this is the last battle and Bill gets the support and statement that he needs , love Suzex

[butterfingersbimbo]

big hugs off me too! good luck for the meeting, i got to this point with el and school too and her paed came and i ended up getting in a right state, the senco cos trying to make me look like a liar and i ended up crying my eyes out in frustration....after i left the paed had a right talk with the senco and i think he really put her in her place....result was they applied for assessment very soon after..... <'> <'> <'>

[marshmallow]

<'> <'> <'> I've got no good advice to add, the others have all said! I'll be thinking of you on Wednesday and hope things get sorted soon, I'm glad you've people fighting on your side. Good luck. <'>