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If your child has Asperger's Syndrome..

(15 Posts)
TheDuckster Sat 04-Jun-11 16:45:18

I would really appreciate any feedback from parents of a child with Asperger's Syndrome who is in full-time education - ie not home-schooled.

I realise there are a lot of questions below. Please don't feel you have to answer them all. Any answers you are able to provide would be very helpful.

1) Age of your child

2) Does your child actually have a formal diagnosis of AS?

3) What were/are the major issues your child has struggled with at school?

4) Is your child at a mainstream, mainstream special, independent or independent special school?

5) What provisions (if any) have been put in place for your child by the school?

6) Which provisions have actually helped/worked?

7) Which provisions have not worked?

8) What provisions NOT already in place would you like to see added?

9) Is your child happy at school?

10) Has your school generally been helpful/understanding?

11) Has your LEA generally been helpful/understanding (if applicable)?

12) Does your child have SEN Statement? If so was it requested by the LEA or you?

13) If you DO NOT have a SEN Statement - have your requested/been refused one?

14) If you DO have a SEN Statement - did you have to go to Tribunal?

defineme Sat 04-Jun-11 16:46:57

Why do you want to know?

unfitmother Sat 04-Jun-11 16:47:12

OK, but, why would you like to know?

TheDuckster Sat 04-Jun-11 16:55:02

Sorry I should have posted the reason for my questions. To clarify:

My daughter has AS. She is now at University. We home-schooled her (she had been bullied in mainstream school) so didn't have to go through the difficulty many parents do in getting help from school/LEA.

I am about to start volunteering to assist parents who have children with AS, specifically in their quest to get help from schools/LEA - I want to gather as much background from those already 'in the trenches' as I can.

unfitmother Sat 04-Jun-11 17:02:38

OK,

1) 14

2) Yes

3) behaviour, tolerating others

4) mainstream,

5) Autism support base, classroom support

6) Support base

7) N/A

8) More support at unstructured time

9) Yes

10) Yes

11) yes

12) yes, by LEA

13)

14) No

pandabug Sun 05-Jun-11 16:14:15

1) Age of your child
12

2) Does your child actually have a formal diagnosis of AS?
He has a dx of ASD and he is treated as a child with AS

3) What were/are the major issues your child has struggled with at school?
Behaviour, social skills, sensory processing difficulties, adjusting to change, cognitive skills involving processing and short term memory, handwriting, anxiety, depression, low self-esteem

4) Is your child at a mainstream, mainstream special, independent or independent special school?
independent special school

5) What provisions (if any) have been put in place for your child by the school?
SALT, OT, social skills group, social skills and life skills embedded into the curriculum, keyworker sessions, very small classes, all support staff have in-house ASD training

6) Which provisions have actually helped/worked?
All of them are helping

7) Which provisions have not worked?
None

8) What provisions NOT already in place would you like to see added?
Psychological therapies which he is on the waiting list for

9) Is your child happy at school?
Yes

10) Has your school generally been helpful/understanding?
Yes, they are excellent

11) Has your LEA generally been helpful/understanding (if applicable)?
No, they disagreed that DS need a statutory assessment and that he needed to attend his current school

12) Does your child have SEN Statement? If so was it requested by the LEA or you?
Yes, by me

13) If you DO NOT have a SEN Statement - have your requested/been refused one?
N/A

14) If you DO have a SEN Statement - did you have to go to Tribunal?
Yes, twice. Once for an assessment and once to change the named placement

TheDuckster Mon 06-Jun-11 06:41:54

Thanks for the replies so far.

unfitmother - Autism support base, classroom support
Is it possible to give a little detail of what this actually entails?

pandabug
Could I ask how long it took you to get the final assessment ie from the initial appliaction until the 2nd tribunal ruling. Was your DS in the indepenednet school thorughout this time - ie did you fund the school fees until the assessment was finally agreed.

More replies would be very much appreciated

ZumbaRumba Mon 06-Jun-11 07:18:42

1) Age of your child 6 yrs

2) Does your child actually have a formal diagnosis of AS? Yes

3) What were/are the major issues your child has struggled with at school? Mainly understanding and 'playing by' social rules, both explicit and more subtle. This affects all aspects of his education, from accepting the authority/direction of teachers, to friendships, to worlking in pairs/groups/as part of a class group etc.

4) Is your child at a mainstream, mainstream special, independent or independent special school? An ASD unit within a mainstream primary school

5) What provisions (if any) have been put in place for your child by the school? The unit, or 'resourced provision' as it is properly called, is amazing. Small class sizes, high staff-child ratio, a SALT works with them 1-2-1 and in groups on a weekly basis, specially trained teachers and TAs, fantastic staff-parent relationships and involvement of parents...I cannot sing their praises highly enough. In DS's previous school, he had a pretty much full-time 1-2-1 TA and the school made some effort to train their staff appropriately, but it just wasnt enough to meet my DS's needs.

6) Which provisions have actually helped/worked? The small class size and high adult-child ratio of his current provision has been absolutely crucial to my son's development and happiness. It has made a huge difference to his whole experience of school and to his day-to-day behaviour. I don't really know what the future (ie. secondary school) holds for DS, as I cannot currently imagine him coping with a class of 30 kids again. He just cannot cope with following the national curriculum rigidly in a large group of kids. At least for now, he needs a high level of adult intervention and highly differentiated work to have any chance of settling down and actually doing something constructive rat school ather than freaking out every 5 minutes - and even with full time TA support, I cannot see how a mainstream school environment could provide this

7) Which provisions have not worked? CAMHS / psychotherapy wasn't hugely helpful, although I quite enjoyed offloading all my woes grin

8) What provisions NOT already in place would you like to see added? I'd like some more strategies to help my DS cope with his anger. I'm looking into this privately.

9) Is your child happy at school? My DS is pretty happy on a day-to-day basis, now, although he still has meltdowns and occasionally says he hates school. However, there is a huge difference from his reception year at school when he was regularly trying to escape (physically) from school. He is a different child now, really. Much calmer and happier.

10) Has your school generally been helpful/understanding? Current school is fantastic. Last school was hit and miss. His class teacher was lovely, the SENCO was pretty good, the Headteacher was unhelpful. They couldnt cope with the situation, really, though and in the end they had to admit that.*

11) Has your LEA generally been helpful/understanding (if applicable)? Are LEAs ever truly helpful? Statements, proper provision for kids with AS etc = big bucks. I know I had to fight for everything my DS has - his diagnosis, his statement, his school place. I made myself ill fighting for it. I don't believe the LEA is staffed by instrinsically evil people hellbent on making my DS's life a misery, no grin, but I also know that they would not have given us the provision we have without the almighty fight we put up.

12) Does your child have SEN Statement? If so was it requested by the LEA or you? MY DS has a Statament. I requested it, although the school supported my application

13) If you DO NOT have a SEN Statement - have your requested/been refused one?

14) If you DO have a SEN Statement - did you have to go to Tribunal? *We didn't have to go to tribunal, thankfully. The LEA agreed ot the Statutory Assessment, and then agreed to the Statement within the legal time frame. However, none of it felt straightforward. I was completely manic about getting evidence togetehr and left nothing to the professionals. I was demented, quite literally - ringing people up, emailing, hassling. We did have to go to a meeting to discuss which school would be named, as they were going to name his mainstream school but with 1-2-1 support, which he had been getting on SA= anyway to no effect. It was extremely stressful. I feel hugely for anyone who has to go to Tribunal. Must be a nightmare (but worth it if you get the Statement / support your child needs, obviously).

HTH! I'm happy to discuss nay aspect of this further, as it consumed my life for several years and I have huge empathy with other parents of AS children trying to get the right education and support for their child.

TheDuckster Mon 06-Jun-11 07:24:53

ZumbaRumba
Thank you for the reply.Can I ask:

i) how old was your child when he was formally diagnosed? Was it difficult to get the diagnosis?

ii) Exactly what evidence did you present with the application - I am interested to note that you say you didn't leave it to the 'professionals' - does that mean it was your own evidence?

iii) How detailed is the list of 'needs/provisions' on the statement - ie is it framed in broad terms or quite specific terms?

Thanks again

ZumbaRumba Mon 06-Jun-11 07:41:58

i) DS was 5 yrs old when he got a diagnosis. It took about 14 months from getting a GP referral to the Paediatrician, to formal diagnosis.

ii) I wrote very detailed advice outlining what I believed my DS's needs were and what support he needed /was proven to work/not work. I got evidence from the Speech and Language Therapist, Paediatrician, Occupational Therapist, CAMHS and the Ed Psych, plus the SENCo at DS's school. However, I met with all of them/spoke to them beforehand to advise them of what I thought my DS needed. I was extremely pushy, I have to admit. I didn't want half a page of cut and pasted sentence - I wanted them to give as a full a picture of my DS's needs as possible. Where I saw gaps in their reports, I wrote my own notes and attached these to the professional reports. I also copied in notes from meetings with professionals and emails between myself going back to when DS first had issues at nursery where I thought it demonstrated any points I made in my own advice. I went very OTT, I realise this. Seriously. I wrote about 12 pages of advice, all referenced to a separate pack of 'evidence'. But I knew that my LEA is particularly tough and wont give an inch unless you push for a mile, so i went all guns blazing from the word 'go'. It is amazing what desperation will drive you to, too!

iii) In the first draft of the statement, where the LEA has named my son's original school, the language is quite vague. It specified full time support at 35 hours per week, including SALT input, but didn't specify who the support would be provided by (TA, specialist LSA, who? what training?) or how much input the SALT would have/what type of support this would be (training TAs? Visiting once a trm, month, week etc?). I would have pushed for much more specific and quantified support in the Statement if we had stuck with that school. Because he has a place in resourced provision, the language is much more vague and I am OK with that for now. It simply specifies a place at the school, with full time 1-2-1 support for any activities taking place within the mainstream school, outsid eof the resourced provision. His annual review is very close, though, so we'll see....

ZumbaRumba Mon 06-Jun-11 07:43:49

I should say for point ii) - I did rely on professional evidence, yes, but I didn't leave it merrily to them / the LEA to sort out. I chased everything up, I requested copies, I discussed beforehand, I cajoled/begged/threatened in order to get appointments and therefore advice in time for the statutory assessment. I left nothing to chance,basically. I realised quite early onthat nobody cares as much about your child as YOU. You are just another name on the list to the profesisonals involved, as wlel emaning as they may be.

pandabug Mon 06-Jun-11 13:23:19

Could I ask how long it took you to get the final assessment ie from the initial appliaction until the 2nd tribunal ruling. Was your DS in the indepenednet school thorughout this time - ie did you fund the school fees until the assessment was finally agreed.

It took about 20 months in total but that was due to the first tribunal and then having an amended statement for secondary which we also appealed against. The special school was for secondary only so we didn't fund any fees. He stayed at his mainstream primary the whole time until he transferred, but he got a FT 1:1 once the first statement was finalised.

tabulahrasa Sat 11-Jun-11 00:24:23

1) 15

2) yes - and because you asked somebody else, he was 13 when he was officially diagnosed, after 10 years of SALT input and 6 years of assesments and monitering at the CDC

3) interaction with peers, writing, spelling

4) mainstream

5) supervised group at lunchtimes which he can choose to go to and a laptop

6) well he finds the laptop useful

7) from my massive list? lol

8) I really really wanted them to implement a circle of friends in primary

9) no, he loves the academic side of it and is doing well, but he hates it because of the other pupils and some fairly major bullying

10) no, they're rubbish tbh, no communcation at all, they withdrew his IEP because I wanted input (and made the mistake of telling me that was the reason) I had to threaten them with the DDA before they would let him do home economics :\ (which he's blooming good at, he just can't lift a pan of water)

11) as an LEA they're not fantastic, however there are some really good people in the education department

12) no, I'm in Scotland - we don't have them

13)

14)

Melhuik Sat 18-Jun-11 15:12:52

1) 9

2) Yes

3) Social interaction with peers, concentration, speech, handwriting, disruptive behaviour and anxiety.

4) Mainstream

5) An assistant, OT, speech therapy, small group work, social skills and laptop

6) All have helped to a certain degree

7) The school has not been helpful every request seems to be a long drawn out process as if they are doing him/me a favour!

8) His assistant being with him rather than being used for other 'duties'

9) Generally yes

10) Not at all they have called me neurotic and have told me that I am causing his difficulties

11) The LA were helpful after he started to self-harm and I telephoned or e-mailed every day, once the statement was in place they stopped their visits

12) Yes. Took three years and a nervous breakdown!!!!

13) We were initially refused until he started to self harm.

14) No but it was a long drawn out process and took several meetings with heads of departments i.e OT and speech therapy to get someway to where we wanted to be.

EllenJaneisnotmyname Sun 19-Jun-11 13:43:15

1) Age of your child 11

2) Does your child actually have a formal diagnosis of AS? No, HFA due to speech delay, but he's above average IQ.

3) What were/are the major issues your child has struggled with at school? Problems not wanting to write, inference, prediction, lack of friendships, difficulty keeping his emotions under control.

4) Is your child at a mainstream, mainstream special, independent or independent special school? Mainstream primary, about to transfer to mainstream secondary.

5) What provisions (if any) have been put in place for your child by the school? DS has a Statement for 15 hours 1:1 mostly within the classroom and 5 hours lunchtime support. Visual timetables and social stories were used when he was in infants. He has had individual sessions to help his social skills, language development, inference and prediction, use of idiom and transfer to secondary sessions. He uses an Alphasmart Neo, (supplied by us) for any writing tasks beyond a few words. He is monitored by the ASD advisory teaching service, who assess him and suggest provision.

6) Which provisions have actually helped/worked? They have all helped even social skills.

7) Which provisions have not worked? He still has no desire to have friends , but the class are really supportive and lovely.

8) What provisions NOT already in place would you like to see added? Circle of friends, regular (once or twice weekly) organised games at lunchtime when football is banned to enable DS to be included.

9) Is your child happy at school? 75/25 happy

10) Has your school generally been helpful/understanding? After initial horror, they have been quite supportive with advisory teacher help, but if DS had been more problematic, I think it might have been a different story.

11) Has your LEA generally been helpful/understanding (if applicable)? Advisory teachers have been excellent if overstretched. LA admin rubbish.

12) Does your child have SEN Statement? If so was it requested by the LEA or you? Yes, at age 6, requested by us not the school.

13) If you DO NOT have a SEN Statement - have your requested/been refused one?

14) If you DO have a SEN Statement - did you have to go to Tribunal? No, they improved the wording in most instances from proposed Statement.

HTH

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