Any help, suggestions would be greatly appreciated!

[sylvm]

My daughter aged 15 has an autistic spectrum disorder, dyspraxia and visual processing disorder and has always found life, particularly school, very challenging. She has never been statemented.

 

The GP has referred her to CAMHS for help with anxiety but I know this may take a long time for an appointment to come through.

 

Keeping things as brief as possible, she never settled at secondary school and ended up with what is known as a functional visual impairment (somatic loss of sight) during year 7. She was to all intents and purposes totally unable to see although all medical tests were clear. Her sight returned after about 7 months (during the school summer holidays!). The school were very unsupportive and we made the decision to remove her from there early in year 8 and she was educated at home for a few months using online schooling. She can be a very difficult child to live with 24/7 and this was not working for any of us. She then started at her current school at the beginning of the Summer Term of year 8. They were extremely supportive, she was on a very restricted timetable which gradually increased over time and they used a "circle of friends" to support her, take her round school etc. (she would not go into school or come out on her own and needed to be taken to classes etc). This ideal phase lasted for just over a year until last summer when 1 member of the "circle" had had enough of my daughter and basically the group fell apart. Since that time my daughter has had no friends to "hang out" with round school and spends her lunchtimes trying to find a club she can go to (even if it not really her cup of tea) or just waiting for lunch to end. There have been various incidents of bullying, lack of support in classes which I am fairly sure have been resolved but they have had an effect, also the SENCO has been off long term sick since November time. As she was my immediate contact and my daughter's "person she could go" to this has made things very difficult. I have met with the Head of Year but he is basically "fire fighting" problem pupils (and teaching for the majority of the week). The school also made 30 member of staff redundant last summer which means there is less general support to go round than there was before.

 

It has seemed that when things get too much for my daughter she gets a physical manifestation of illness - headache, leg pain, feeling terrible (and looking it too). The other manifestation was obviously when she lost her sight. We have had a number of times when she has become too ill to go to school - for a long time I genuinely thought she did have a virus. Now I tend to judge it on temperature and glands only. She is currently in the middle of one of these episodes. How can I best deal with it? She has been off school since Tuesday - she did go in this morning for a Physics GCSE module but they sent her home again afterwards. This occasion, seems to have been triggered by the stress of exams, plus the fact that they did not allow her her permitted 25% extra time in last week's exam (all sorted now but difficult at the time!). To me, it seems like things build and build for her for some time, then all at once she tips over the edge and becomes "ill". Eventually, this resets but then of course things also start building up again.

 

Any suggestions on how I should deal with this would be greatly appreciated. I was wondering if it would be a good idea to ask school for a reduction in her timetable to reduce the stress levels. I am anxious not to make things worse than they already are. This morning, we have really had to cajole her to go to the local shops with my husband - somewhere she has been many times - she said it was because there were "people" there. This worries me greatly. The GP is not really interested, really had to beg him for help - he was like "what do you want me to do, I can't give you any anti anxiety drops".

[Sally44]

Firstly the ONLY legal document of support for SEN is a Statement.

Without that any support is not guaranteed and can be withdrawn at any time.

 

For the immediate issues I would suggest that you arrange a meeting with school SENCO [or SENCO stand-in]. Ask school to invite the Educational Psychologist and state all this in writing, and that the purpose of the meeting would be to discuss a reduced timetable and support available for your daughter.

 

I would get a GP referal to Clinical Psychology and/or CAHMS that have experience in working with children with an ASD.#

 

I would contact the LA Parent Partnership and discuss the issues with them and ask them to come to any school meetings with you.

 

You also need to sit down and think about what you want to achieve for your daughter. She can continue to scrape through school as she is doing, get what qualifications she manages, and move onto a local college if they have something suitable and if they can support her. Sometimes this works.

 

Alternatively you ask the LA to assess her for a Statement and you seek an ASD specific school that can meet all her needs and manage her anxiety. There are independent schools out there that can do it. However it will cost you money because you will need to submit written EVIDENCE in the form of reports, and correspondence that prove that ONLY the school you want can meet all her needs.

 

You will need an independent SALT, EP and OT report as well as a report about her visual processing problems, and symptoms of anxiety.

 

You need to get Clinical Psychology and CAHMS to put in writing all her needs and how they should be met for inclusion in her Statement. Quote the SEN Code of Practice to them.

 

If you don't have the Code of Practice yet, get hold of it via this link http://www.ace-ed.org.uk/advice-about-education-for-parents/Special_Educational_Needs

 

Follow the links on the lefthandside, and then the links on the right hand side to download the booklets.

 

As awful as your situation is now, it is only when a child is failing in school, and often not even attending, that you have your best chance of securing an independent school.

 

Most independent schools go up to age 19 and some have sixth form facilities.

 

The LA will most likely try to fob you off. They may refuse to assess, and if they do you must send in an Appeal to SEND. If they do issue a Statement, which takes 26 weeks from start to finish, you will most likely find that they have produced a weak and unenforceable Statement. That is deliberate. Again you have to Appeal to SEND about the contents of the Statement and the Placement.

 

When you get your Appeal date from SEND they will give you a deadline date by which you must have submitted all evidence towards your appeal. This is when you submit your independent reports.

Edited January 21, 2012 by Sally44

[Carrera74]

I'd definately recommend getting in touch with Parent Partnership. I had so much support from mine. He helped me no end.

[Sally44]

The Parent Partnership are better than nothing. They can give you advice and can attend any meetings in school or at home about your child.

 

They are usually employed by the local authority, so they are not completely independent. They are often in the same building as the LA inclusion officers and the EP service. They are not really proactive.

 

For example, regarding my own son who has an ASD and Dyslexia. I spoke with the PP about the fact that he had dyslexia, but he was not receiving any provision or specialist teaching for this. Her advice to me was "write to the specialist teaching service and ask them how they would support a child with dyslexia." She already knew that that department did not have anyone with an additonal qualification for dyslexia over and above their normal teaching qualification. But she didn't tell me that. If she had done she would have saved me alot of time. It was someone at www.network81.org.uk who told me that he should have provision in his Statement that specified a specialist dyslexia teacher qualified to level 7 to teach and assess and it should state how many hours. So I then write to the Specialist teaching service to ask them how many of their staff had this qualification. I found out that none of the teachers had any qualifications specifically related to either autism or dyslexia.

 

In my case I found they did give me advice, but they didn't tell me things that they knew about the LA or the EP service that would have helped my case. To me they are rather like double agents because they do meet and talk to everyone involved with SEN. So I would also advise that you do use them to get advice and attend meetings, but don't tell them everything, especially if you don't want the LA to know about something you are going to do or something you have found out. Play your cards close to your chest.

[Kathryn]

Hi Sylvm,

 

I know you've been around a while and posted before about your daughter - so sorry to hear the problems are ongoing.

 

A statement is not the magic answer to everything, alas, especially for a child of 15 with this level of severe anxiety. Let's be realistic: it takes 26 weeks anyway, and that's without potentially 3 appeals before you finally get the right school placement. You could be in for a long haul.But pushing for a statutory assessment may get something moving at least, and get her problems taken more seriously.

 

In the meantime a reduction in her timetable may be the answer, especially if she suffers such extreme physical reactions to stress. It's not the end of the world if she doesn't complete her GCSE's at the same time as her peers. Sounds like your GP is a bit useless. Can you change? You do get "anti anxiety drops" they're called antidepressants. Maybe this is something you should explore: noone wants their child on drugs but they can be an effective short term measure for severe anxiety.

 

K x

[Sally44]

It also depends on what you are hoping to achieve in the long term. A Statement covers a child at school up to age 19 - which is the age most independent ASD specific schools go up to.

A placement that can manage her anxiety is going to be a major point, especially as she has even lost sight due to somatic symptoms of anxiety.

If you are looking for an independent school, you need one that has a similar peer group from a needs and cognitive ability point of view. So if she is capable of taking GCSE's, you want a special school that is ASD specific and whose pupils do sit GCSE's.

I don't think Statements are relevent if a student is going to go to college??[i'm not sure so check that.]

But even if it does not have any 'legal' power to force a college to provide provision, what it would do would be to give details about what your daughter's needs are and what kind of level of support she would need to meet those needs.

It will take some time to get a Statement - but even the fact that you are requesting one is going to concentrate the minds of the LA and professionals because they all need to see her and assess her and produce up to date reports for that Statement.

[flappyfish]

Not exactly the same situation, but my son developed very poor mental health during Y5 which then deteriorated big time when he went to High School. It seems to me that the lack of SENCO is key here, and I would write to the head teacher and explain what a key role she was playing and ask if there is someone else in the school who can take on some of this role until the SENCO returns - I found that communication with ours, which wasn't always easy or comfortable, really did drive the improvements at school. Our son was able to do all his lessons in the schools' inclusion provision (only a few rooms - nothing fancy!!) until he was stable enough to have a go at attending some that he thought he might manage. It took from October to July to get him back in but we did. He did have funding at that point but not a statement, although he does now. I am inclined to agree with the poster who said she might be too old for a statement to be viable, but then the school leaving age goes up next year, so maybe that's not the case. I think I'd be inclined to have a go anyway but get help filling in your bits so that you don't get it sent back. Like the previous poster said, the process will at least force people to look at her. CAMHS were fantastic with my son and did a lot of liaising with school. He saw someone from specialist CAMHS for nearly two years and as well as helping him, it kept me this side of sane! I do hope you get somewhere.