Hello, new here! Sebastian's mum.

[Josephine]

Hello everybody,

I'm so pleased to have found this board..it looks like such a great place for information and support. I have a 4 year old son called Sebastian who has Aspergers. He had problems from birth but was only diagnosed as being on the spectrum last Summer whilst we were living in New York. He was placed in a special school there but i'm hoping he will manage in a mainstream primary school here. At the moment, i'm just trying to navigate the whole statement thing (is it tricky to get one? I heard it was) and also hoping he will get speech, OT and PT in the meantime. I'd like to find a social skills group for him too (we're living in Somerset for the next 4 months then moving to London in March). If anybody has any advice for me regarding the statement/school thing, i would be so grateful. Anyway, i'm looking forward to being an active member of this board! Nice to meet you!

Jo

[Kathryn]

Hi Jo, welcome to the forum, nice to meet you.

 

I have a 20 year old and a 12 year old but I'm sure others with younger children will be able to give you some helpful practical advice.

 

Getting a statement is tricky, (as a glance at the posts in the Education section will show you!). Local authorities will usually expect a school to meet the special educational needs of a child with AS from their own budget and many actively dissuade parents from embarking on the statementing process. The problem is that without a statement there is no guarantee that an individual child will have their needs assessed, or will get the help they need.

 

You may be fobbed off and given inaccurate information by whichever local authority you end up in so it's vital to become well informed about the process.

 

For statrters, it's worth looking at the following pages from the National Autistic Society, for a summary of the early years education system and SEN,

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1763&a=3229

 

It's also a good idea to get hold of a copy of the SEN Code of Practice which is a comprehensive guide to the special educational needs process. You can download it here or ask them for a free hard copy:

 

http://www.teachernet.gov.uk/docbank/index.cfm?id=3724

 

It's probably not worth starting the statementing process until you're finally settled, but you could use the time to gather as much professional evidence as you can of your son's needs, it will help.

 

Plenty of support available here too from those who've been through it all!

 

K x

 

 

 

 

[justine1]

Hello everybody,

I'm so pleased to have found this board..it looks like such a great place for information and support. I have a 4 year old son called Sebastian who has Aspergers. He had problems from birth but was only diagnosed as being on the spectrum last Summer whilst we were living in New York. He was placed in a special school there but i'm hoping he will manage in a mainstream primary school here. At the moment, i'm just trying to navigate the whole statement thing (is it tricky to get one? I heard it was) and also hoping he will get speech, OT and PT in the meantime. I'd like to find a social skills group for him too (we're living in Somerset for the next 4 months then moving to London in March). If anybody has any advice for me regarding the statement/school thing, i would be so grateful. Anyway, i'm looking forward to being an active member of this board! Nice to meet you!

Jo

Hi Jo

I have four boys my 6 yr old has Aspergers.Welcome to the group I have only been on here a few months but its really great,I often feel stupid asking questions that my seem silly but nobody here makes me feel that way I always get excellent advice for absolutley everything.It's funny you mention how Sebastian was different from birth,my Sam is the same I knew from when he is two weeks many even health professionals doubt this at times,so very glad you mentioned it!Welcome again!

Justine

[JsMum]

 

 

 

Hi Jo, I love the name Sebastian, my son is 12yrs old, as Kathryn has said it is stressful and time consuming to go down the road of statementing but if you feel he wont get his needs met or he wont be safe to himself or others then ensure he has one for his transition to his school especially if its mainstream, with the right support and if he can cope in the enviroment of a mainstream school he has the best chance of coping in school with a statement rather than without one, the fight is the way it is so parents give up, so dont.

 

J wouldnt of got his statement or be in a special school without this forum, so you have definatly come to the right place, Im sure you will feel welcome let us know how you get on with the statementing process.

 

CONTACT A FAMILY is always a tradition of mine to refer parents too so do look on their website too, they have some brilliant easy to read booklets on statementing and in some areas offer practical one to one support in the process.

 

As well as NAS and IPSEA ect.....

 

Wonderful to meet you.

 

JsMumxxx

 

[Tally]

Hi Jo, and welcome to the forum.

 

I am an adult with Asperger's, so I don't have much experience of dealing with the educational issues you're dealing with. It just occurred to me though, that since you are only in Somerset for 4 months, it might be worth waiting until after you have moved. I don't know whether the process would need to be re-started when you move to a new area or not, and you wouldn't get far enough in 4 months for it to be worth it.

[Josephine]

Thank you so much for your replies..you've given me lots to think about and explore.

 

Kathryn- thanks for the NAS and sen links..i'm going to investigate them now. I'll also take a look at the education post archive and find out the gory truth on statementing! By the way, which of your children has Aspergers? (or both?) How long have you been moderator for the forum?

 

Justine..thanks for your message. Sounds like you have your hands full! I just have one other child, a 10month old girl called Hetta. It is interesting to hear that Sam was also developing differently from the word go..was he slow hitting milestones or just different in the way he responded to you? Sebastian was premature and slow developing and they had actually noticed some slight abnormalities in his brain during my 20 week prenatal scan. He had low muscle tone, reflux and didn't seem to 'see' me until much later than you would expect. His development continued along what i now understand to be the typical aspergers path but nobody could pinpoint what it was and it took 3 years for the penny to finally drop.

 

JSmum - i really appreciate your insights on statements. I'm guessing you have a statement for your boy? I clearly need to think hard before i go down that road. I am going to look at the Contact a Family, it sounds like a great resource. Thank you for welcoming me to the forum and for your suggestions.

 

Tally- that is a really good point and one which hadn't even occurred to me. I just presumed that statements were transferrable across UK counties but i will definitely check! Thank you!

[trekster]

Welcome to the boards

 

[information about professional removed by moderator]

 

i had to wait until i was 16 before my diagnosis. Then other complications came at me very quickly. Im pleased you are here so come and share and have fun.

Theres an educational section of these boards which should be able to offer advice on statementing.

 

i hear the book "surviving the special educational needs system" is good as well?

 

Alexis

 

 

Hi trekster - if you want to recommend a particular professional please do so via pm - forum rules. Thanks - Kathryn

Edited November 7, 2009 by Kathryn

[JsMum]

JSmum - i really appreciate your insights on statements. I'm guessing you have a statement for your boy? I clearly need to think hard before i go down that road. I am going to look at the Contact a Family, it sounds like a great resource. Thank you for welcoming me to the forum and for your suggestions.

 

 

 

Jay has a full time statement and in a specialist residential school as he requires a 24hr curriculum, he can not even access mainstream activities, children, staff, he requires very spersific support.

 

J use to be in mainstream school but was not coping mainly due to the enviroment, he didnt recieve a statement until year 4, he transferred into a specialist school in year 7 when he transferred to secondary school, even that was a fight, but with the forums support we got there.

 

So yes he has a statement and much more.

 

JsMumxxxx

 

[Kathryn]

Hi Josephine

 

My 20 year old was diagnosed with AS at 15, and she is the reason I joined the forum at a time when she was really struggling at school. I became a moderator about 3 and a half years ago - (is it really that long??! )

 

On statementing - once you have one, they are transferable to some extent, but it's complicated. The whole process takes a minimum of 6 months so you wouldn't be able to complete it before you move.

 

K x

[dana]

Hi and welcome to the forum.

 

Danaxxx

[trekster]

Hi Josephine

 

My 20 year old was diagnosed with AS at 15, and she is the reason I joined the forum at a time when she was really struggling at school. I became a moderator about 3 and a half years ago - (is it really that long??! )

 

On statementing - once you have one, they are transferable to some extent, but it's complicated. The whole process takes a minimum of 6 months so you wouldn't be able to complete it before you move.

 

K x

 

i became a mod in about 4 years and a volunteer in about 6 on 2 different boards.

i wasnt diagnosed early enough to give a statement. (lol meant "to be statemented")

 

Alexis

Edited November 7, 2009 by trekster

[Martin Howe]

Hello and welcome to the forum!

 

 

[Sally44]

Hello and welcome.

The Statementing process is set at 26 weeks from start to finish, although it can be shorter, it should not take longer.

 

As you mentioned wanting to get OT and PT input into the Statement then you need to be on the waiting lists to see an OT and PT. The waiting list in our area is 2 years to see an OT.

 

And having a diagnosis of an ASD does not mean you automatically get a Statement. As mentioned LEAs have given funding to schools, so all schools have a budget for SEN. But the Statement is for anything over and above what the school can typically provide. It is also to secure NHS input from an 'educational' point of view. If you look on the IPSEA website on their law and guidance section it lists some legal judgements on this subject. For example my LEA argued that OT was not an educational need. But as he has a diagnosis of Sensory Integration Disorder, then it obviously is.

 

So if your child needs things like OT and PT as well as having a diagnosis of an ASD, then it begins to look more 'complex'. And my LEA says that Statements are for those children with significant and 'complex' needs. So you do need to explain the 'complex' nature of the difficulties.

 

Also regardless of how well a child is talking, all aspects of their speech (expressive/receptive/comprehension, semantics, pragmatics etc), should be assessed. It is also important for their social skills to also be assessed so that supports or programmes are in place for unstructured free time.

 

When you ask an LEA for an assessment towards the Statement - you or the school can request it. Then the LEA asks their professionals to do reports. You can submit your own evidence and reports. I did have some private reports done. I also asked his Play Therapist, and the instructor at the trampoline club to write an A4 page about him. Those were also very useful.

 

The SEN Code of Practice will help you understand what should be in the Statement. That is very important. At the end of the process you want to have a very specific document that itemises each need and how each need will be met in terms of hours of support and staffing provision. It should not be vague. Everyone involved should know exactly what is required of them. That is what the COP says. If the Statement is not like that, then how would you ever be able to challenge the school that they were not fulfilling it? For example, if it says that XXX should have 'regular' support. What does regular mean. Does it mean daily, continuous, weekly, when needed etc. If it says he should have 'access to adult support in the playground', who is going to do that. Will it be a suitably qualified LSA or a dinnerlady? So there is alot to be won or lost in the wording. It is very much the legal interpretation of the language used that is important.

 

 

 

[Josephine]

Hello and welcome.

The Statementing process is set at 26 weeks from start to finish, although it can be shorter, it should not take longer.

 

As you mentioned wanting to get OT and PT input into the Statement then you need to be on the waiting lists to see an OT and PT. The waiting list in our area is 2 years to see an OT.

 

And having a diagnosis of an ASD does not mean you automatically get a Statement. As mentioned LEAs have given funding to schools, so all schools have a budget for SEN. But the Statement is for anything over and above what the school can typically provide. It is also to secure NHS input from an 'educational' point of view. If you look on the IPSEA website on their law and guidance section it lists some legal judgements on this subject. For example my LEA argued that OT was not an educational need. But as he has a diagnosis of Sensory Integration Disorder, then it obviously is.

 

So if your child needs things like OT and PT as well as having a diagnosis of an ASD, then it begins to look more 'complex'. And my LEA says that Statements are for those children with significant and 'complex' needs. So you do need to explain the 'complex' nature of the difficulties.

 

Also regardless of how well a child is talking, all aspects of their speech (expressive/receptive/comprehension, semantics, pragmatics etc), should be assessed. It is also important for their social skills to also be assessed so that supports or programmes are in place for unstructured free time.

 

When you ask an LEA for an assessment towards the Statement - you or the school can request it. Then the LEA asks their professionals to do reports. You can submit your own evidence and reports. I did have some private reports done. I also asked his Play Therapist, and the instructor at the trampoline club to write an A4 page about him. Those were also very useful.

 

The SEN Code of Practice will help you understand what should be in the Statement. That is very important. At the end of the process you want to have a very specific document that itemises each need and how each need will be met in terms of hours of support and staffing provision. It should not be vague. Everyone involved should know exactly what is required of them. That is what the COP says. If the Statement is not like that, then how would you ever be able to challenge the school that they were not fulfilling it? For example, if it says that XXX should have 'regular' support. What does regular mean. Does it mean daily, continuous, weekly, when needed etc. If it says he should have 'access to adult support in the playground', who is going to do that. Will it be a suitably qualified LSA or a dinnerlady? So there is alot to be won or lost in the wording. It is very much the legal interpretation of the language used that is important.

 

Sally..thank you so much for taking the time to explain all of this. I really appreciate it. I had no idea how complex and involved the whole statementing thing was. In New York the school board had Sebastian assessed by psych, PT, OT and speech and after their reports went back to the board we had to attend a meeting where the board decided what type of education was most suitable (ie. what type of class size, whether special education, mixed or mainstream) and allocated therapies. Sebastian received 2 hours of OT, 1 hour of speech mostly to work on pragmatics and 1 hour of PT within his school week. I'm terrified to read that there can be a 2 year waiting list for OT. ..my son can't even take off his own socks yet.

 

Do you think it would be advisable to wait until we move to London to start the statementing process? Should i decide where to live based on how short the therapy waiting lists are? I'm so reluctant to leave it any longer when he is missing out on the help he needs in the meantime but i see that it might muddy the waters to start the process in one county and finish it in another.

 

[Josephine]

Thanks for the welcome Dana, Alexis and Martin..pleased to meet you!

Alexis..i will look up that book in the library tomorrow...it sounds very

helpful - thanks!

Kathryn- i was going to jump straight into trying to get a statement but after reading your post and Sally's, i am wondering whether i should wait out the 4 months in Somerset and start it in London. My choice of which borough in London we move to is going to be strongly related to the quality of the state schools/ availability of therapies..do you know where i should go to research this? How is your daughter doing now? How did it work out in her education?

Jay's mum - it sounds as though you really have been through it...thank goodness for this forum and people being so kind and willing to share their knowledge.

[Kathryn]

Hi Jo,

 

Yes it's a better idea to wait till you move, because the process would only have to be restarted - statements are linked to a particular local authority and each area has different procedures.

 

My daughter is doing really well thanks - better than we could possibly have forseen 5 years ago. She was completely out of the mainstream education system for 4 years and after a false start at college last year she is now doing a pre - university course, and loving it.

 

London boroughs I'm not sure about, I'm sure others on the forum have better knowledge there, (I live in Hertfordshire and I wouldn't recommend it!)

 

K x

[trekster]

I'm pleased your daughter is doing well in her pre university course Kathryn.

 

i read a book called "not stupid" about some parents that set up their own school for autistic's in the borough of Hillingdon Manor. Also heard there is an ASD school in Milton Keynes. They had 2 kids at either end of the spectrum and are oversubscribed. Found the book in Waterstones after reading an article about it in a newspaper sometime ago.

 

Tell us a bit more about Sebastian? Do you think he would benefit more from an ASD, special or mainstream school? The NAS have schools in the UK for autistics one of which is on their website at http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=138 address. Called Sybil Elgar School.

 

Advocacy for education service details are on http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=143&a=9995 also run by the NAS.

 

In case you hadn't heard the NAS is the leading charity for autistics and in the UK. It does campaigning and is gradually expanding to include more views of autistics. It runs an employment support scheme which I've heard is very good for some autistics and unsuitable for the higher intelligent ones. Joining them might be an idea as you could get the last copy of Communication magazine which has ads in there for autistic schools and other strategies for living with autism.

 

Alexis