Waiting for ECAP

[girltiger]

Hi,

 

My four year old daughter starts school in September and she is currently attending a preschool. The preschool suggested we refered her her for assesment due to a number of concerns they had. To cut a very long story short she was sent for a mult-disciplinary assesment. At the first meeting with the paeditrician we were told she had high functioning Aspergers, but she didn't know how severe it was and that she quite possibly could have gone unnoticed as she is very high functioning.

 

Our daughter has now had her four assement sessions and we have her ECAP on Monday.

 

Since the initial Aspergers diagnosis we have been working hard to understand what the pre-school's concerns were. I have discovered that what the pre-school want is for our daughter to be given 2.5 hours a day one on one care for the first two terms.

 

I was quite shocked at this as it seems quite lot but I figure she knows best, and to be honest I think she is probably right. But what is hard is that our daughter isn't that bad. Having read some of the other posts we are are very very lucky, which makes me think that our chances of getting anything at all are very remote.

 

Our daughter has social issues. The clinic have said that she is lagging behind socially and does not play cooperatively. She falls into the category of desperatly wants to make friends but doesn't know how to. When the other children do play with her they do things like get her to guard their bikes (she was really proud that she had made some friends on this occasion) so other children can't go on them or get involve her in 'naughty' things. She is very trusting and takes things literally.

 

She also won't attempt anything she isn't certain she can do perfectly. She will only do writing if someone sits with her and 'forces' her to do it. So if a class are asked to do something and she doesn't think she can do it, she will instead go and find something to do that can do.

 

Otherwise however she is excelling. At four and a quarter she is a fluent reader, she can do basic maths and I am always recieving comments about how her speech is vary advanced and she has a wide vocab range. Apart from when she doesn't do something perfectly and she refuses to try new things, she is otherwise very well behaved, follows instructions well and is very compliant.

 

Her preschool are concerned that because of this, they won't see her as a big problem and she is definatly the most subtlely affected child they would have had. I can tell that we are going to fight really hard to get anything for her and sometimes that is really hard. Quite often I look at her and think what are we doing. She is doing so well, how can anyone think she deserves extra help? How is that fair to other children? I don't have any issues with her having extra help, or the diagnosis. But is it fair to request so much?

 

If she doesn't get this extra help she will still get through school. She is also likely to be quite unhappy as she will have trouble making friends. She does need to be taught how to interact. But as parents, we obviously want her to be able to reach her potential and we definately don't want her to be unhappy.

 

I have recieved some repoprts in advance of the meeting on Monday and the worst that they have come back with is that she "showed a lack of skills associated with social interactions and did not readily play co-operatively with others". The summary says that "A referal could be made to Early Years Foundation Stage Inclusion Service and the area senco could work with pre-school teachers to encourage her social interactions". Not quite sure what this means but doesn't sound very promising especially as they have graded her as having the cognitive skills of a five year level.

 

Has anyone has similar experiences?

 

Sorry if I have waffled.

[wasuup]

My 4 almost 5 year old could read at 2 and was fluent by 3 because he was fascinated with the alphabet and numbers probably although it is thought that there is something called Hyperlexia which is commonly found in children who are on the spectrum. His main difficulties at school are clumsiness (falls over a lot/bangs into others) handwriting, getting dressed/undressed, answering questions, possible absence seizures, communication difficulties (with semantics and pragmatics), poor pronunciation of a few syllables, and difficulties with social interaction.

 

For the social interaction difficulties at playtimes he has his own buddy (an older child school allocated as part of the buddy scheme in schools) and playtime staff are aware of his difficulties. In class the teacher and a small group of children sometimes (according to his IEP) play games together that involve turn taking and the TA takes him and a couple of other children out to play a game so he can learn how to interact and learn the rules of a game.

 

I think you should request an occupational therapist visit the preschool to advise regarding the writing. Things you can do to help now with that are, dot to dot books, play doh activities, mix some corn flour with water and put it on a tray and do some finger writing, that kind of thing.

 

ASD's can be subtle especially in girls the thing you have to watch for as she gets older is an increase in anxieties which is why you need to get as much help and support in place for your daughter now as you can to reduce this possibility as much as possible. Children with ASD's can be above average intelligence, average or have learning difficulties so there is no reason why your daughter should not get any help for her social interaction deficit just because she is able academically.

 

[wasuup]

It may help you to listen to this?

 

http://www.asd-forum.org.uk/forum/index.php?showtopic=20963

[Sally44]

If your child is coping well academically, but has difficulties with social communication and play, then that is the responsibility of the Speech and Language Therapist. They should assess the child and make recommendations as to targets to be worked on. This might be through a Social Skills group, or specific SALT targets eg. initiating conversation, joining in etc. She may need to be taught rote learnt scripts to help her do this and that learnt script would then be generalised into the playground or other environments. A Teaching Assistant, familiar with the scripts or prompts being used to teach her these skills should be on duty during playtimes so that if she is spending alot of time alone, the TA would go up to her and prompt her to use the script she has been taught to intiate play/conversation or to join in. It may take along time to get to that stage, and much more basic things may need to be taught before that would work. But I think you understand what I mean. A good assessment and monitoring system for these types of difficulties is called SCERTS, and the SALT should know about this.

Then there are also things like Circle of Friends, mentoring or buddy systems that some schools are familiar with. And schools that have experience and expertise in ASD (mixed mainstream and SEN), usually have more structured playtimes and also have dinnertime clubs so that the child with an ASD is not struggling without the structure they usually have in the classroom.

[girltiger]

Thanks for your replies. Feeling quite keyed up for the meeting. You are right in that just becuase she is high achieving academically it doesn't mean she doesn't need help. The hardest part is that she reposonds well one to one but not in group situations. So I very rarely experience any problems because I am able to give her one to one attention.

 

Unfortuantely dot to dot's are no good as she gets too frustrated that she can't draw a straight line between the dots. She plays lots with play doh and moon sand and has no real sensory issues in this area.

 

What she does like doing though is drawing monsters and imaginary creatures. This is because there is no right or wrong so we are persuing this avenue.

 

I don't think she has Hyperlexia as when I googled it it seems to relate to children who are self taught. My daughter can read simply because she loves learning new things and I have taught her phonetically following Jolly Phonics. She is very logical and phonetics are very logical (tricky words and alternativce sounds notwithstanding). Maths is the same.

 

She is very observant and I think this has made teaching her maths and reading very easily. But she is also very observant about her own abilities.

 

Thanks for the audio link, I had already come across it but I think it highlights exactly the sort of issues we are going to be faced with. I also was sent a link to

which I thought was absolutly fab.

[wasuup]

Hi

I wasn't suggesting the play doh ect for sensory issues-these sorts of activities ares good for building strength in the fingers and writing/drawing in cornflour of finger painting is much easier than trying to write with a pencil. They are good for pre writing activities with any child.

On the surface my son is a good reader and classed as gifted and talented by the school but if I give him a story with no words just pictures in he doesn't seem to get why the characters in the story are doing something exactly. For example "why are the cat and mouse running? His answer "they are having fun". The answer should be "the cat is chasing the mouse".

Your daughter does sound really bright-my son works best in quieter smaller groups but still has difficulty answering abstract questions or thinking of his own ideas to ask or discuss and tends to daydream if left to his own devices when independant work is expected.

 

[Karen A]

Hi girltiger.What is ECAP please ? I cannot think of what the abbreviation stands for.I hope it goes well today whatever it is.

We have Ben who is 10.Ben obtained an AS diagnosis a few months ago.He had a diagnosis of dyspraxia with social communication difficulties for two years but it was reviewed.Ben always had a very advanced vocabulary.He also wants to make friends but tends to dominate conversations.Until he started in year 2 at primary school everyone thought that Ben was just bright with a bit of an attitude problem.He was certainly not considered in need of any special support.

We have found that as Ben has progressed through primary school the difference between him and his peers has become more obvious.I think that is because children develop so much socially in primary school.Games become more complicated and more complex social skills are needed.Teachers also expect more mature behaviour and greater independence as children go further through school.

We found that things became more stressful because Ben struggled to keep up and became more anxious which impacted his behaviour.We were fortunate that a teacher who has a son with AS recognised that Ben was similar to her son and raised the issue.We obtained a Statutary Assessment and subsequently a Statement.Ben now has full time support in school.He is very accademically able in some areas.

 

I think that if the pre-school are attempting to obtain support for 2.5 hours a day it is worth supporting them even if you are unsure regarding whether it is needed.Experience on the Forum shows that it is much easier to reduce support if it is not needed than to obtain more if it is inadequate. Karen.

Edited April 6, 2009 by Karen A

[Sally44]

Although a child can be very capable, it is looking at the individual difficulties to see how that will affect her in the classroom environment. For example you can have a very bright child, but if they have problems with processing language, or auditory memory etc then whole class teaching is going to be impossible for them to process and they won't learn in that environment. In that situation you would move to small groups work, and for verbal information to be also given out on visual worksheets, for access to a Work Station if needed and for frequent checking by a dedicated TA that she is following what she should be doing.

If she has problems with handwriting it is the Occupational Therapist who should assess for this because it isn't necessarily and muscle co-ordination thing. My son has the same difficulties, and his are more down to motor planning. So my son cannot write or draw something he cannot see. He appears not to know whether to start or how to do it. I suspect he has difficulty using this system because of the fact that (a) he has to see what he has to do, and ( he works mainly in 3D as he is brilliant at lego models and can use imagination to make up his own intricate models that are way advanced for his age. So if you think in 3D, how do you transfer that to a 2D picture?

So, you need to know the root cause of the drawing or writing difficulty. If the difficulty does fall under the remit of OT, you will have difficulties getting that provision met without a fight because OTs are like gold. But if you are told that it isn't an educational need, or that OTs are employed by the NHS and not the LEA and therefore the LEA are not responsible for the provison then that is incorrect.

The best way to get provison is through a Statement, but if your daughter is very able you are going to have to prove complex and severe needs. You maybe able to do that as it in no way relates to intelligence (eg. Stephen Hawkins).

But don't be afraid to put professionals on the stop and ask them (always in writing) to explain to you why your child cannot write (for example), and for them to say what supports or approaches or systems should be used to improve that skill. If it is a memory retrieval problem (which is part of my sons conceptual problems), then they can play memory retrieval games etc.

[wasuup]

Although a child can be very capable, it is looking at the individual difficulties to see how that will affect her in the classroom environment. For example you can have a very bright child, but if they have problems with processing language, or auditory memory etc then whole class teaching is going to be impossible for them to process and they won't learn in that environment. In that situation you would move to small groups work, and for verbal information to be also given out on visual worksheets, for access to a Work Station if needed and for frequent checking by a dedicated TA that she is following what she should be doing.

If she has problems with handwriting it is the Occupational Therapist who should assess for this because it isn't necessarily and muscle co-ordination thing. My son has the same difficulties, and his are more down to motor planning. So my son cannot write or draw something he cannot see. He appears not to know whether to start or how to do it. I suspect he has difficulty using this system because of the fact that (a) he has to see what he has to do, and ( he works mainly in 3D as he is brilliant at lego models and can use imagination to make up his own intricate models that are way advanced for his age. So if you think in 3D, how do you transfer that to a 2D picture?

So, you need to know the root cause of the drawing or writing difficulty. If the difficulty does fall under the remit of OT, you will have difficulties getting that provision met without a fight because OTs are like gold. But if you are told that it isn't an educational need, or that OTs are employed by the NHS and not the LEA and therefore the LEA are not responsible for the provison then that is incorrect.

The best way to get provison is through a Statement, but if your daughter is very able you are going to have to prove complex and severe needs. You maybe able to do that as it in no way relates to intelligence (eg. Stephen Hawkins).

But don't be afraid to put professionals on the stop and ask them (always in writing) to explain to you why your child cannot write (for example), and for them to say what supports or approaches or systems should be used to improve that skill. If it is a memory retrieval problem (which is part of my sons conceptual problems), then they can play memory retrieval games etc.

 

 

I recognize what you are saying in my son as well Sally. Even when typing a sentence which I have asked him to write he needs support as he can not seem to get the words in his head out through his fingers and tends to miss out pronouns ect.

He got 3 visits from the OT in school and that is all school were allowed on his current SA level.

 

How did you get on with the ECAP today?

[Sally44]

That is why Statements are so brilliant because they over ride all these quotas that school have for Ep Psy and SALT etc.

That is why the level of need is important and must list every need and the level of support needed must be specified and quantified in terms of hours and staffing provision. That is the level of support the LEA has to provide.

To: Wassup - an OT is the professional to work on handwriting difficulties if they are muscular. But some handwriting difficulties are down to motor planning ie. mind concept to motor movements, or are memory retrieval problems ie. retrieving the word and its meaning from memory and putting it in a sentence in their head first before they can even begin to attempt to write it. That type of difficulty might (I don't know) fall under a different professional (eg. SALT or EP). That is why it is very important to identify the root cause of the problem. But I found it impossible to get LEA or NHS staff interested to delve that deep. Because if the difficulty is down to memory retrieval then you need to work on that skill and not the actual hand holding a pencil skill - does that make sense? There are plenty of assessments that can be used to identify what the problem area is, but assessments cost money.

 

[Karen A]

That is why Statements are so brilliant because they over ride all these quotas that school have for Ep Psy and SALT etc.

That is why the level of need is important and must list every need and the level of support needed must be specified and quantified in terms of hours and staffing provision. That is the level of support the LEA has to provide.

To: Wassup - an OT is the professional to work on handwriting difficulties if they are muscular. But some handwriting difficulties are down to motor planning ie. mind concept to motor movements, or are memory retrieval problems ie. retrieving the word and its meaning from memory and putting it in a sentence in their head first before they can even begin to attempt to write it. That type of difficulty might (I don't know) fall under a different professional (eg. SALT or EP). That is why it is very important to identify the root cause of the problem. But I found it impossible to get LEA or NHS staff interested to delve that deep. Because if the difficulty is down to memory retrieval then you need to work on that skill and not the actual hand holding a pencil skill - does that make sense? There are plenty of assessments that can be used to identify what the problem area is, but assessments cost money.

 

Sally.OTs do not just work on handwriting difficulties if they are muscular.If you say that you will upsett professionals who are fully trained and qualified to assess and treat all aspects of daily living activities . Although OTs do a different job to EPs they can help with planning activities,organisation etc. OTs train to degree level and provide specialist input including to some children with difficulties with sensory integration.It is difficult to access OT because they are in short supply however they actually also work in some areas such as mental health where there work is based mainly around helping with motivation and planning.

I speak here wearing my other hat.I worked as a nurse in rehabilitation and in the community as a district nurse for many years and so worked very closely with OTs.

Multi professional assessment is just as important as a Statement because it requires specialist input to establish exactly what the specific difficulties are and who should support them.An OT assessment should be provided by the NHS on the basis of a GP referal if a child has motor planning difficulties.An OT assesssment would be central to establishing the root cause of the problem.

OT for activities of daily living can be provided by the NHS without the need for any documentation at even School Action if the child does not have SEN.They usually won't cost the LA or parent anything because most OTs are funded by the NHS.Karen.

 

[Karen A]

That is why Statements are so brilliant because they over ride all these quotas that school have for Ep Psy and SALT etc

 

Hi.In our area this is not the case.EPs still visit a school a certain number of times per year.Although parent of children with Statements may have more right to insist on an EP visit it just means that other parents who have children at School Action plus don't get access at all.

Psychiatrists and CAMHS services are not usually included in Statements and so these professionals can decide what service to provide regardless of whether a child has a Statement or not.

Ideally if SEN provision was funded as it should be then intervention would be provided earlier without the need for a Statement.This would be a much fairer and improved sysytem rather than the current one where the very few who are able to obtain a Statement can push harder than the majority who do not have one.

I have for the last two years been able to fight to keep support in class for Ben all be it with limited success.At the same time other children with similar needs in the same class have had no support at all.In the last few weeeks Ben's TA has been offsick.The class TA has been moved from supporting none Statemented children to cover Ben only weeks before Key Stage 2 SATS.I am sorry to not feel that Statements are so brilliant in this situation.It is a situation I take no joy in at all.

We happen to have a Statement partly because OH and myself are articulate and had very good support.That is not the situation for most people in my area which feels very unfair and is not something I am proud of.

 

[Sally44]

But that isn't your fault Karen!

Before I had a statement it was my child that couldn't get access to anything because statemented children got their needs met because the school and LEA are legally bound to meet what is in the statement. So when we as parents are told that 'you don't need a diagnosis, or a statement to get the provision your child needs' - unfortunately that isn't true at all. What the LEA actually mean is 'please don't get a statement because then we will have to do what is in your statement as well and we are stretched enough anyway'. However, the LEA clearly points out that alot of the funding is already with the school anyway. If that school has decided to spend that money on something other than SEN then that is the schools choice.

And that is partly why I get so frustrated about closure of special schools, because it is much more cost effective to have a greater level of support and professional input in a special school instead of having an inadequate service spread over all mainstream schools.

I just found out through the governors at my son's new school, that parents of typical children are trying to move their children out of this Enhanced Resource school because they don't want their children mixed with kids with ASDs. Many parents of typical children don't want inclusion. It is another aspect of NIMBYs.

I have an older sister who has moderate learning disabilities. She went to a special school and she learnt to read and write etc. She works and lives independently. I don't have the same confidence that she would have attained that level of independence if she had been born 30 years later and had been included in a mainstream school.

I also have another family member with mental health issues. And I have a sister in law that used to work in a hospital for the mentally ill. So the hospital closed, and those with mental illness received 'care in the community'. But actually they didn't receive care in the community it all. They became revolving door patients being sectioned, and then returned into the community again until they became so ill they were sectioned again. So Care in the Community was really just a sound bite slogan that didn't benefit the people it was supposed to support. Some people with mental illness need santuary, not the community.

It isn't fair that only clued up parents get the supports for their children. That is probably why alot of us are on these types of forums trying to pass on information.

I have a background in law, and also trained to become an OT (but didn't finish the training).

I feel there is alot more that can be done for children with ASDs if schools knew about the typical problems these children have, and if parents were listened to.

For example, I talked with the SENCO of a secondary school who is pulling her hair out because the school has decided (against her experience and advice) that TAs will no longer be dedicated to any one pupil. So previously the TA stayed with the pupil and got to know them really well and therefore could see any problem areas or stop a meltdown before it blew out of proportion. But the school wanted to be able to move staff as and when needed to save costs. But this has actually increased costs because a different TA in each lesson causes the children to be more anxious and have more meltdowns which results in them having to be removed from the class and they then have to have an adult remain with them for the duration. So this actually involves more staff than was needed before.

The system isn't unfair because we fight for our rights. The system is unfair because it has been made that way so that many parents and children will fall by the wayside and their needs will not have to be met - it is just deliberate cost cutting. That is true because the LEA know what the rules are and and what their responsibilities are yet they still lie to parents. One mother with autistic twins was told that only one of her children would get an autism unit place because she couldn't expect the LEA to cover the cost of two places for just one family! Every time a parent goes to tribunal it costs the LEA around �10,000. In my case there was no way the LEA could win, and the Panel at Tribunal warned the LEA about their behaviour and asked the Inclusion Officer if there were no Codes of Practice at the LEA, as if they had one and were familiar with it then we shouldn't all be there. Our LEA has at least 5 children in a private school paying around �42,000 per year. So why don't they actually provide the services - it would cost them less.

My son got his ER place because another child lost theirs. That is an awful feeling. But it isn't my fault. There are so many children with a diagnosis of ASD and most of them need ER placements, but LEAs aren't increasing the number of ER schools. Something has got to give.

Regarding professionals time included in the Statement. It depends what the childs needs are. If you have evidence that your child needs a certain professionals input that it can be incorporated into the Statement. My childs SALT hours are quantified in terms of one to one therapy and in terms of additional time she needs to spend per term doing other things related to the one to one therapy. This also includes producing a report prior to the Annual Review. He has such severe communication issues that you could not make an informed decision about the Statement at Annual Review without a progress report. This is also the same for the Educational Psychologist. They too have to produce a yearly report prior to Annual Review. The SALT (not the EP), also attends MEPs. This actually saves time and money because everyone is at the meeting together to set the targets.

Most Statements don't include that. That maybe because those children don't need it. But if the child does need it it should be included. We parents have to work within the systems that are there. This includes Statements. If an LEA does not think the level of provison being asked for is necessary they have their own professionals who can produce that conclusion as evidence. I haven't got anything that my son doesn't need. No professional, either LEA/NHS or private is going to lie in their report. But I know for sure that LEA and NHS professionals have to make recommendations within their systems budget. That doesn't mean that that level of provision meets the child's needs.

And these issues are not just related to education. There are very similar issues relating to health care and postcode depending on whether you get certain treatments or drugs.

I know that OTs do more than muscular interventions as I was training to become one. What I was trying to make clear was that finding out the root cause of the problem will identify which professional is responsible for it. And OTs can differ in their opinon. The private report I obtained agreed with your interpretation (and my understanding of what an OT does) that the OT would be responsible for whatever was the root cause of the difficulty my son has with handwriting whether it was muscular, motor planning, memory retrieval, working memory etc. The NHS OT disagreed and said that although OT has something to offer in every aspect of the process of learning, their remit is limited to muscular interventions for handwriting difficulties and sensory integration issues. So the EP has taken responsibility for the handwriting programme, and the motor planning and conceptual problems he has. OT have tried to keep out of it.

 

 

[Karen A]

Before I had a statement it was my child that couldn't get access to anything because statemented children got their needs met because the school and LEA are legally bound to meet what is in the statement. So when we as parents are told that 'you don't need a diagnosis, or a statement to get the provision your child needs' - unfortunately that isn't true at all. What the LEA actually mean is 'please don't get a statement because then we will have to do what is in your statement as well and we are stretched enough anyway'. However, the LEA clearly points out that alot of the funding is already with the school anyway. If that school has decided to spend that money on something other than SEN then that is the schools choice.

 

The LEA are actually excellent in my area and very honest with parents...unusual I know.They have been extremely supportive in ensuring that what is documented is provided.I don't think the school are opting to spend money on other things either although I can't prove that.When the other children in Ben's class are the children of friends of mine I still take no joy in the fact that Ben gets support and they don't.I know we need the Statement but to be honest regard it more as a necessary evil than as something to be happy about.I cannot take joy in a system where often it is those who have support or are educated who are at an advantage whereas those who don't are less likely to get it.

The school does not get a lot of funding.The LA do there best but I live in one of the most deprived boroughs in the country and there is not a lot of funding to support all of the schools in the borough.Karen.

 

 

[Karen A]

.

And that is partly why I get so frustrated about closure of special schools, because it is much more cost effective to have a greater level of support and professional input in a special school instead of having an inadequate service spread over all mainstream schools

 

I have to say that they are not closing specialist provision in my area either.The specialist provision is excellent .

Autism outreach is also very good.Outreach teachers from the specialist provision support many children in mainstream very well.Thanks to the support provided parents have a choice regarding whether to opt for specialist provision or to opt for mainstream with support.I am very pleased that the one thing a Statement does enable in theory is the right of parents to choose.Karen.

 

[Karen A]

I also have another family member with mental health issues. And I have a sister in law that used to work in a hospital for the mentally ill. So the hospital closed, and those with mental illness received 'care in the community'. But actually they didn't receive care in the community it all. They became revolving door patients being sectioned, and then returned into the community again until they became so ill they were sectioned again. So Care in the Community was really just a sound bite slogan that didn't benefit the people it was supposed to support. Some people with mental illness need santuary, not the community.

 

I respect your opinion Sally.I have a rather different opinion.I should say to clarify that my son,myself and my husband are all regarded as mental health service users because we recieve weekly support from CAMHS.I am a member of a mental health foundation trust.

My husband is also employed within a mental health trust at deputy director level.I am extremely proud of the work that he does We remain where we live because of his work.He has worked for the NHS for over twenty years for almost all of that time he has worked for a mental health trust .Mental Ill Health Diagnosis are recognised as disabilities and individuals with a disability related to mental ill health have the same rights to be supported in the community as any one else.

 

 

I will not go into detail here because as I previously said I am in the process of moving on.However I certainly have experience of mental ill health.

 

No professional, either LEA/NHS or private is going to lie in their report. But I know for sure that LEA and NHS professionals have to make recommendations within their systems budget. That doesn't mean that that level of provision meets the child's needs

 

That might be the case.However it could equally be said that professionals who are payed to come up with reports as evidence to support parents in a private arrangement are likely to present the evidence in a way that favours the parents.Karen.

Edited April 8, 2009 by Karen A

[Karen A]

girltiger. Very sorry I have managed to take your thread off topic.I appear to be doing that rather a lot. <'>

I will try to get off my high horse now.

I hope ECAP was helpful on Monday.Karen.

Edited April 8, 2009 by Karen A

[Sally44]

Yes, let us know how the meeting goes.