statement review - needing advice

[katkin]

Hi all, I'm needing a bit of advice and help. My very close friend has a son T with Down's, age just 8. School also suspect he has ASD, I more than suspect, mum and dad are convinced and have been to seminars by the DSA and their suspicions are confirmed. However it, the ASD, has never been officially dx. Mum and dad would like it to be so as they feel a proper dx will affect future provision for him - his is in an sld school. Health said LEA would start process, LEA said to inquire before his next statement review, mum has just done this and LEA now say it is a health matter.

Question 1 - who to go through for best advice?

T also has quite significant behaviour problems at home; school say he exhibits none of these there. Now I know and you know that he is probably just about coping with school and all lets loose once he's out.

Question 2 - how do we go about proving this to school? Is there any established proof that this is so for ASD children?

They are running a school home integration project but have refused to allow him on the programme inspite of mum asking as they say he has no problems at school. Now I have worked on this project and know most emphatically that not having problems at school is not a reason to not let him be a part of the S.H.I.P.

School say T is continent at school, at home he is not and smears etc. School refuse to offer help with coping strategies which I find odd, because if he has no toiletting issues at school surely they would only be too pleased to impart their superior knowledge to a mere parent!

Question 3 - how to get school to offer help to parents whilst thinking that it is their (the school's) idea?

I've said that I will go to T's review with mum which is at the beginning of next month. I would really like to be of some positive help but I'm not normally on the parents side of the table at reviews so this will be a new experience for me!! But dad cannot go to the review and I think mum needs some one with her, she agrees too.

Lastly relations with school are just about ok; they have been to tribunal in the past (and won) over the statement provision for SALT which was not being provided. My personal opinion of the school talking from a work point of view is that it is mediocre - I can think of better SLD schools! Example is that it took 18mths for school to send home pecs for T that mum begged for and after I had set up and explained schedules and visual communications to her!

As I say all suggestions gratefully received and taken on board. I would so much like to get parents and T the help they deserve. Love Kat

[helenl53]

Hi Kat

 

Sorry I am not able to help with this but I just want to say, that you must hang in with these parents.

 

You are a godsend - and I know there is another mum on this forum that will agree.

 

We parents need guys like you.

 

By the way - we haven't been able to talk about you - you just keep hanging around

 

Love

 

HelenL

[katkin]

Sorry Helenl, I think there is some kind of addiction with this site, I just can't seem to get away from it! Maybe I need some kind of "patch" to wean me off gradually! Or perhaps I am so paranoid about what you will say about me I have to keep on dipping in here to make sure you don't! <'> Kat

[Zemanski]

1. diagnosis - go back to GP and/or ask school to write to GP and ask for referral to CAMHS for assessment for ASD, it shouldn't matter who does it, either a parent or the school may ask for this referral. As a fresh referral it may take longer but shouldn't get bogged down in the arguments over whose responsibility it is.

 

2. proving behaviour is different at school and at home - very difficult but it can be done. Keep a detailed diary of behaviour over a period of time, I use the calendar in utlook express, are SS involved - they may be able to verify that there are problems at home. Some parents have resorted to actually videoing their children but I have heard that this can be seen as an infringement of their rights or privacy ( ).

This behaving impeccably in a stressful environment and then releasing the stress at home is common in AS children in particular - AS is actually known as the Jekyll and Hyde syndrome quite often because of this feature and it is documented:

 

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'Many parents and professionals who work with students with Asperger will appreciate the "Jekyll and Hyde" description of Jessica's behaviour associated with the enormous effort required on her part to "hold it all together" during college hours. "During class hours I found myself coated by this shell. As it covered me, like a nun's habit, I found my inner emotions being pushed to the bottom of my stomach. Returning home, dead on time at five o'clock, I found they would erupt from me like a firework inside a volcano."'

 

Tony Attwood also talks about it but I couldn't find the reference

 

try this thread

 

http://www.asd-forum.org.uk/forum/index.php?showtopic=762

 

and the passive/pretending to be normal thread

 

http://www.asd-forum.org.uk/forum/index.ph...st=0entry9806

 

3. supporting a parent at review - sounds like you are already doing a great job with this - you are there for back up and to empower the parent this is what you are doing.

first I'd suggest sitting down and typing up a 'parent's advice' (this is a formal part of statutory assessment but is a very useful trick for reviews and other big meetings). it should be written by the parent in her voice but I have scribed these in the past. put in any concerns, any points the parent wants to make and any questions they have, it is a sort of statement about the child and the child's needs and how the parent feels they should be met. The good thing about doing this is that there is a written document from the parent that says exactly what she wants it to say and it must be included in the child's files alongside the review documentation. It also gives the parent a list of points so when they get flustered they have something to refer to and don't forget all those little things that it is so important to say. Make sure there are enough copies for everyone at the meeting plus a couple of spares.

Once you have that then your job should be mostly moral support, chipping in to clarify things and giving the parent a nudge in the right direction now and again to make sure she really makes her points and doesn't miss anything out - at my last tribunal my IPS spent most of the time actually telling me to shut up because the chair was doing a really good job on his own!

I wouldn't be too bothered about making the school feel good about things being their idea - the meeting could be quite long enough with all you've got to deal with without pussy-footing around, if you can make them think they're doing things then great but the child's needs are the important issue.

 

hope that helps a bit - the main difference between sitting on the panel and sitting on the parents' side is that it is an awful lot more scary from here!

 

good luck

 

Zemanski

[katkin]

Thanks zemanski, I shall print off your advice and talk to mum about it to get things in writing in logical order. Kat