name that disorder

[JsMum]

 

 

 

Hi NobbyNobbs

 

Wishing you luck, is there any services for children for special needs who have also been in LAC Or adopted.

 

What about keeping a detailed diary of her behaviour for the next three months, the ABC chart is a good pointer.

 

I understand that she has a background but that doesnt cancel out she still could of been born with ASD too.

 

Anyway good luck.

 

JsMumxxxx

 

[NobbyNobbs]

Wishing you luck, is there any services for children for special needs who have also been in LAC Or adopted.

noooo. LAC children are notoriously poorly treated by services. adoption pretty much runs along the lines of 'heres the child, off you go' and if they stay in care they generally are always refused access to CAMHS because they haven't been in placement long enough. then the placement breaks down because the kid isn't getting any help so they still can't access services. our current one has been refused CAMHS because she doesn't have the right kind of paperwork! the last ones were refused because 2 years in placement wasn't deemed 'stable' enough we were amazed we got the child development thing through so fast, we think probably because so many people agree something isn't right. if its just the foster carers saying the support is needed noone listens. a very sad situation, but there it is.

[Mumble]

What is more he does not feel he fits anywhere.

<'> I understand that feeling.

[Karen A]

noooo. LAC children are notoriously poorly treated by services. adoption pretty much runs along the lines of 'heres the child, off you go' and if they stay in care they generally are always refused access to CAMHS because they haven't been in placement long enough. then the placement breaks down because the kid isn't getting any help so they still can't access services. our current one has been refused CAMHS because she doesn't have the right kind of paperwork! the last ones were refused because 2 years in placement wasn't deemed 'stable' enough we were amazed we got the child development thing through so fast, we think probably because so many people agree something isn't right. if its just the foster carers saying the support is needed noone listens. a very sad situation, but there it is.

 

My LA and CAMHS have excellent services in place for children who are looked after.I was somehow under the illusion that everywhere would do so well.

It is a scandal that that is not the case.Someone is failing the most vulnerable children in this country which makes me cross.

 

[trekster]

I don't know what the question is, I've lost track of the thread

 

However, my position would be that we have far too many separate diagnoses and that this causes confusion. We would be better off (in my opinion) with one dx - autism.

 

Having lots of labels simplifies the individual too much and doesn't actually give people working with them the information they need to help them specifically. You need (in my opinion) the basic 'category' and then individual assessment and guidance based on that assessment that looks at the individual rather than making use of multiple diagnostic criteria and trying to fit the individual to preconceived ways of being.

 

That might happen sooner than you think, due to phase out aspergers in 2012.

 

Alexis

[trekster]

Hi.I do not understand why you think that Asperger's Syndrome would be ruled out in this case.Ben is very similar to this child and he has Asperger's Syndrome.

I would also add that from the perspective of obtaining support Asperger's Syndrome would be a far more helpful diagnosis than hyperlexia,semantic pragmatic speech disorder or non-verbal learning disorder.These diagnostic lables are often not recognised by LAs in the UK as diagnostic categories within the ASD spectrum and so minimal provision is available.

I increasingly find the distinction between ASD and AS frustrating.Ben has the same difficulties in having AS as he would have if he had a label of ASD.In some ways life is more difficult.If he had obvious difficulties people might appreciate that he needs support and understanding.As it is because Ben happens to have advanced verbal speech and vocabulary he is expected to behave like a university graduate at age 11 because he talks like one....whilst he has the emotional ability of a seven year old.Karen.

 

i can totally empathise and understand your pain. People dont recognise my hidden needs.

 

[trekster]

noooo. LAC children are notoriously poorly treated by services. adoption pretty much runs along the lines of 'heres the child, off you go' and if they stay in care they generally are always refused access to CAMHS because they haven't been in placement long enough. then the placement breaks down because the kid isn't getting any help so they still can't access services. our current one has been refused CAMHS because she doesn't have the right kind of paperwork! the last ones were refused because 2 years in placement wasn't deemed 'stable' enough we were amazed we got the child development thing through so fast, we think probably because so many people agree something isn't right. if its just the foster carers saying the support is needed noone listens. a very sad situation, but there it is.

 

Are there any charities that support adoptive parents that you could contact? See if you can get an assessment to determine if she has significant mental health problems caused by her situation. Was she abused by her birth parents? Or did they give her up as they couldnt cope with her behaviour? Can a kid of that age be diagnosed and treated for PTSD? Im asking since if you try the mental health route before the autism route it might be a way in.

 

Also mention Lorna Wing Centre (which can diagnose autism without parental background if neccesary) http://www.autism.org.uk/nas/jsp/polopoly.jsp?d=1843

That could distinguish autism from "seperation anxiety" or any other disorder the authorities are trying to mislabel her with.

 

keep working with the schools, the autism act has been passed by law detailing an autism strategy has to take place. By december 2010 the strategy will be published and the authories wont have any excuses to fall back on.

 

Alexis

 

[trekster]

<'> I understand that feeling.

 

Only meetng other autistic folk allowed me to feel at home. NAS out of schools clubs run up and down the country from age 8 upwards.

[Mumble]

That might happen sooner than you think, due to phase out aspergers in 2012.

I hadn't heard of that plan. Tentatively, I think it's a good thing (so long as it doesn't mean phasing out me! ) Do you have any links to the plan/policy etc. who is has come from?

[Sally44]

hyperlexia would fit. i played wii resort for the first time today. i was playing golf and after saying once that i got a bogey when it flashed up and once that i got a birdie to my mom K could then tell me each time whether i had got a bogey or birdie. she also sees signs in shop windows etc and will suddenly say 'thats X' and is almost always right.

 

the only problem is they say they've only recoded it in males, although they have heard of a few females with it.

 

 

I know of girls dx with hyperlexia.

[Sally44]

Have you heard of BIBIC before? They are a charity that can carry out assessments and give therapy programmes. They have experience of neurological conditions including ASDs. I think they charge an admin fee, but it might be a way of getting assessments done if other channels are not working. Their website is www.bibic.org.uk

 

[trekster]

I hadn't heard of that plan. Tentatively, I think it's a good thing (so long as it doesn't mean phasing out me! ) Do you have any links to the plan/policy etc. who is has come from?

 

BBC news article mentioning the DSM-V and whether Aspergers being taken out to replace autism with "autism spectrum disorder" (ie verbal and non verbal autism to be included).

 

Alexis

[NobbyNobbs]

Are there any charities that support adoptive parents that you could contact? See if you can get an assessment to determine if she has significant mental health problems caused by her situation. Was she abused by her birth parents? Or did they give her up as they couldnt cope with her behaviour? Can a kid of that age be diagnosed and treated for PTSD? Im asking since if you try the mental health route before the autism route it might be a way in.

we wont be adopting, we only foster and at the moment we dont know what her future looks like, its a very complicated case. i can't go into details of her case, but its safe to say all looked after childlren have significant mental health problems because of their situation. if there are some who aren't, ive not heard of them. we wont have access to mental health services for a good while yet, because it can do more harm than good. if we were to seek outside advice we would seriously annoy social services and thats never a good idea, so we'll follow the set path until that's exhausted, hopefully it'll work out. officially we can't do anything without her social workers consent anyway

 

thanks for all the help everyone. apart from anything else i now have a pretty good list of concerns to take to her assessment.

Edited November 18, 2009 by NobbyNobbs

[Karen A]

Are there any charities that support adoptive parents that you could contact? See if you can get an assessment to determine if she has significant mental health problems caused by her situation. Was she abused by her birth parents? Or did they give her up as they couldnt cope with her behaviour? Can a kid of that age be diagnosed and treated for PTSD? Im asking since if you try the mental health route before the autism route it might be a way in.

 

 

 

Alexis

 

Hi.Thouhght I would say from personal experience.To go via the mental health route is possible but it is a long and traumatic way in.The diagnosis and treatment for children with PTSD is possible however it is lengthy and traumatic.As Nobby has suggested herself unless undertaken very carefully when there is a stable situation for the child it can do more harm than good.

As I suggested earlier Ben was eventually diagnosed via that route.It involved extremely stressful assessments for child and parents.The treatment has involved three years of weekly individual psychotherapy for Ben.My husband and myself have also attended weekly psychotherapy for three years.It is difficult to describe how stressful the experience has been for all of us.After two and a half years of psychotherapy which was supposed to make Ben better we found that he has AS after all.

Ben finishes psychotherapy at christmas.My husband and myself will finish at Easter.I will be forever greatful to the professionals who have supported us.Ben has made substantial progress.However I think there are probably other less stressful pathways into obtaining an AS diagnosis.

Edited November 18, 2009 by Karen A

[NobbyNobbs]

she's had her first assessment and we're looking at multiple developmental delays or disorders (speech and language, motor, emotional) plus severe social and behavioural difficulties and potential permanent disorders. they're drawing up a plan to massively increase her support (probably lots of 1-1) as well as speech therapy etc.

 

i feel so sad for her. when she first came to us i posted in off topic about how clever she was and what sort of things should we be doing to nurture such a bright child. now all of that is slipping away and leaving behind an incredibly bright, incredibly frustrated little girl who will struggle her whole life. and the worst bit is she'd probably struggle less if she wasnt so clever now we're talking about statements and special schools and the shape of her whole life has changed.

[Sally44]

she's had her first assessment and we're looking at multiple developmental delays or disorders (speech and language, motor, emotional) plus severe social and behavioural difficulties and potential permanent disorders. they're drawing up a plan to massively increase her support (probably lots of 1-1) as well as speech therapy etc.

 

i feel so sad for her. when she first came to us i posted in off topic about how clever she was and what sort of things should we be doing to nurture such a bright child. now all of that is slipping away and leaving behind an incredibly bright, incredibly frustrated little girl who will struggle her whole life. and the worst bit is she'd probably struggle less if she wasnt so clever now we're talking about statements and special schools and the shape of her whole life has changed.

 

That is exactly how parents feel when their child is diagnosed. Suddenly the future looks very uncertain, unmapped territory and you realise that your child will have lifelong difficulties. It is an awful time, when you have to let go of some expectations you had, that everyone has for their childs future.

But she is young and however difficult and complicated things are now, children grow and develop. She may never be as her peer group. But she won't stay at the same level she is now. She will gain skills and grow and develop. And she is lucky to be with your family.

[trekster]

she's had her first assessment and we're looking at multiple developmental delays or disorders (speech and language, motor, emotional) plus severe social and behavioural difficulties and potential permanent disorders. they're drawing up a plan to massively increase her support (probably lots of 1-1) as well as speech therapy etc.

 

i feel so sad for her. when she first came to us i posted in off topic about how clever she was and what sort of things should we be doing to nurture such a bright child. now all of that is slipping away and leaving behind an incredibly bright, incredibly frustrated little girl who will struggle her whole life. and the worst bit is she'd probably struggle less if she wasnt so clever now we're talking about statements and special schools and the shape of her whole life has changed.

 

Dont despair, i wasn't diagnosed with anything until i left school. Heres my history (medical and educational)

 

Age 8, told i might not possibly walk due to my damaged feet

Age 15, anxiety, panic attacks, insomnia, depression and put on tranx that made my hyper

Age 16, asperger syndrome, PTSD (self diagnosed), raynauds and fallen arches, (after school and passing gcses)

Age 18, irlen scotopic sensitivity syndrome, nervous breakdown

Age 20, passed 1st college course in computing (not A level standard yet)

Age 21, self diagnosed OCD, started 3 A levels equivalent had 1-1 support throughout which i negotiated

Age 23, passed ICT and Science C/D ICT and E science (7 years of attempting and i passed my A levels)

Age 24, tried university but left within 1.5 years due to bullying with DipHE diet and health (lit review "diet and autism is there a link")

Age 26, fibromyalgia, nearly had another nervous breakdown, went gluten and dairy free

Age 28, dyslexia, IBS, moved into a learning disability supported housing scheme with 10 hours home support

Age 30, about to start my dissertation so i can complete my degree (taken about 7 years but i will get there)

 

Im no saint or superwoman but the more ive been told i cant do x the more determined i have been to overcome that problem.

Most of my family didnt think i would pass my A levels or manage university. Not only did i manage university i was given an opportunity

to experience running my own place at my own pace. Ive been in my place for 2 years and although life isnt easy i can just about manage.

 

With the autism act and strategy (hopefully done by April 2010) we can be given the opportunities NTs (so called normal's) take for granted.

 

Alexis

 

[trekster]

That is exactly how parents feel when their child is diagnosed. Suddenly the future looks very uncertain, unmapped territory and you realise that your child will have lifelong difficulties. It is an awful time, when you have to let go of some expectations you had, that everyone has for their childs future.

But she is young and however difficult and complicated things are now, children grow and develop. She may never be as her peer group. But she won't stay at the same level she is now. She will gain skills and grow and develop. And she is lucky to be with your family.

Im some respects i agree, but why does any disability automatically mean she cant achieve as much as others? My NAS social groups have been invaluable in helping me with my asperger worries. Her peer group could be a group of autistic/asperger kids like herself.

 

My parents are both autistic, my dad long gone (was a nasty autistic) and my mum running a house on her own with my brother living with her. Also she is nanny to a lovely nephew of mine whilst sister is out at work 3 days per week. i think my mum copes reasonably well most of the time despite denying she could be autistic.

 

Alexis

[JsMum]

she's had her first assessment and we're looking at multiple developmental delays or disorders (speech and language, motor, emotional) plus severe social and behavioural difficulties and potential permanent disorders. they're drawing up a plan to massively increase her support (probably lots of 1-1) as well as speech therapy etc.

 

i feel so sad for her. when she first came to us i posted in off topic about how clever she was and what sort of things should we be doing to nurture such a bright child. now all of that is slipping away and leaving behind an incredibly bright, incredibly frustrated little girl who will struggle her whole life. and the worst bit is she'd probably struggle less if she wasnt so clever now we're talking about statements and special schools and the shape of her whole life has changed.

 

 

As difficult as it is to know the future, its better than been fobbed off and not listened too and told its her past, and get on with it, you have definate disorders and developmental delays that actually can be supported and given therapies for many of them, she is at an age where that will make a big difference, they say if you havent reached an EBD kid by 8 its not a bright future for them so it must be even more bleaker if a child has ASD and havent had their needs met, she is young, bright, cheeky as anything I bet, and she has loads of lovely potenital to shine if she is given the support she needs.

 

Statements, special schools and Therapies will bring the best possible oportunities for her, if she didnt have you fighting her corner she would be left to drift further behind and Im sure that bright spark might of blown out along the line and may be other cares wouldnt see the potential you see in her.

 

In a way its the beginning of her life now she has a future with support and understanding.

 

Goodluck, really feel she can still shine that bright star of hers even with all that she is struggling with, god bless her. <'>

 

JsMumxxxxx

 

 

[Karen A]

she's had her first assessment and we're looking at multiple developmental delays or disorders (speech and language, motor, emotional) plus severe social and behavioural difficulties and potential permanent disorders. they're drawing up a plan to massively increase her support (probably lots of 1-1) as well as speech therapy etc.

 

i feel so sad for her. when she first came to us i posted in off topic about how clever she was and what sort of things should we be doing to nurture such a bright child. now all of that is slipping away and leaving behind an incredibly bright, incredibly frustrated little girl who will struggle her whole life. and the worst bit is she'd probably struggle less if she wasnt so clever now we're talking about statements and special schools and the shape of her whole life has changed.

 

 

I just noticed this post and wanted to offer some encouragement.

Three years ago Ben was a very bright but very frustrated child.He was hiding under tables in classrooms and was soiling.He was very anxious and distressed and at times self-harmed.Ben has had some excellent support from CAMHS.Although he still has difficult times he has just completed his first half-term at secondary school.He is doing better in all respects than we could ever have hoped.

Ben is also very bright and this does bring frustrations and at times people expect too much.However he has done really well.Things can change with some good support.

I know that you are very comitted to your foster daughter.She is very fortunate to have someone prepared to advocate for her.Also the fact that her needs are recognised and suppport is being put in place could make a huge difference.

Karen.

 

[NobbyNobbs]

Statements, special schools and Therapies will bring the best possible oportunities for her, if she didnt have you fighting her corner she would be left to drift further behind and Im sure that bright spark might of blown out along the line and may be other cares wouldnt see the potential you see in her.

the health visitor came today and said how noone in Ks family, noone in social services, not even her (HV) saw that there was anything wrong with her, and if she hadn't come to us she would have carried on being thought of as a naughtly little girl who would have grown into a very nasty adult. it also is a great help in accessing services and what she needs, as shes jumped from the behavioural difficulties track (which most foster kids are on) to the special needs track and things have to be done differently. its only been a day and already everything is changing, things we were told weren't possible are happening and the things we've said she needed all along are being put in place

 

thanks for all the advice and support everyone

Edited November 20, 2009 by NobbyNobbs

[julie1]

At age 3 my son was not able to answer questions, could not follow conversations and was very different to other children his own age. But i have to confess that i did not relise how different he was until he started nursery, his teacher asked me to come and watch him and tell her if he behaves the same at home. Well i did and i could not see him, the teacher explained he was under the table which is where he always went and stayed and they were concerned for him. I explained he did not behave this way at home and an EP appointment was made as well as speach and language. Anyway by the end of the term he was diagnoised with semantic and pragmatic language disorder. He needed considerable amount of support to stay in class and he still could not even answer questions like whats your name? he just copyed what the other person was saying. However he got through reception and was improving slowly. We moved to suffolk and he was diagnoised at age 5.5 years with high functioning Autism, he still has language difficulties but is so much better most of the time anyway. He is now having another tantrum so i must go and sort him out..

[Karen A]

the health visitor came today and said how noone in Ks family, noone in social services, not even her (HV) saw that there was anything wrong with her, and if she hadn't come to us she would have carried on being thought of as a naughtly little girl who would have grown into a very nasty adult. it also is a great help in accessing services and what she needs, as shes jumped from the behavioural difficulties track (which most foster kids are on) to the special needs track and things have to be done differently. thanks for all the advice and support everyone

 

Hi.It is tragic that children in the care of the LA do not have the same access to services as others and that so much depends on people knowing how to be assertive in asking for appropriate support.

When Ben was first assessed at his first appointment it turned out that my husband knew the consultant because he works in the NHS.Also we are both middle class,educated and have worked in the NHS.So there is an expectation that despite my background we are able to be clear about our views and we will be listened to.

I often wonder how things might have been for Ben if he did not have assertive English speaking articulate parents who were prepared to fight for him.

We live in an Inner London Borough where there are high levels of poverty.A significant proportion of parents have little spoken English.I do not like to think how many children with various sorts of SEN and real emotional needs end up excluded or involved in crime because nobody is able to advocate for them.

Even when Ben obtained a Statement the LA agreed to everything we asked for.I am sure that was partly because they knew that we would not give in easily.

It is unfortunate that the system is this way.

I just hope that by being active on the Forum I can help others to access appropriate support.

I will get down off my box now.

 

[Sally44]

I know of two families who have adopted children to then find out they are on the autistic spectrum.

Both of these children should have been picked up by the authority that was caring for them. Instead it has been left for these families to begin the process of trying to find out 'what is wrong'.

 

[smiley1590]

she may have aspects of certain signs and traits that overlap into other spectrum related disorders as this can be possible like someone else said she could have AS but also dyspraxic traits within that it can quite complex confusing field to go ..... as all connected and linked somehow i look into all avenues of ASD 's and related disorders too to rule yet see what boxes your daughter ticks i get advice help from NAS as they cover whole range of ASD's and related probs too so be good place to start ... or your GP ??? does she get any support from anywhere at the moment?

 

good luck

take care

XKLX

[trekster]

At age 3 my son was not able to answer questions, could not follow conversations and was very different to other children his own age. But i have to confess that i did not realise how different he was until he started nursery, his teacher asked me to come and watch him and tell her if he behaves the same at home. Well i did and i could not see him, the teacher explained he was under the table which is where he always went and stayed and they were concerned for him. I explained he did not behave this way at home and an EP appointment was made as well as speech and language. Anyway by the end of the term he was diagnosed with semantic and pragmatic language disorder. He needed considerable amount of support to stay in class and he still could not even answer questions like what's your name? he just copied what the other person was saying. However he got through reception and was improving slowly. We moved to Suffolk and he was diagnosed at age 5.5 years with high functioning Autism, he still has language difficulties but is so much better most of the time anyway. He is now having another tantrum so i must go and sort him out..

 

Thanks for sharing your story hope he is ok? for me i wouldn't play with other children at nursery.

 

Alexis

 

[trekster]

Hi.It is tragic that children in the care of the LA do not have the same access to services as others and that so much depends on people knowing how to be assertive in asking for appropriate support.

When Ben was first assessed at his first appointment it turned out that my husband knew the consultant because he works in the NHS.Also we are both middle class,educated and have worked in the NHS.So there is an expectation that despite my background we are able to be clear about our views and we will be listened to.

I often wonder how things might have been for Ben if he did not have assertive English speaking articulate parents who were prepared to fight for him.

We live in an Inner London Borough where there are high levels of poverty.A significant proportion of parents have little spoken English.I do not like to think how many children with various sorts of SEN and real emotional needs end up excluded or involved in crime because nobody is able to advocate for them.

Even when Ben obtained a Statement the LA agreed to everything we asked for.I am sure that was partly because they knew that we would not give in easily.

It is unfortunate that the system is this way.

I just hope that by being active on the Forum I can help others to access appropriate support.

I will get down off my box now.

 

My carer was an inspector for schools in what was then known as Avon. i felt an enormous pressure put upon me not to show her up by the way i was behaving. My behaviour at the time was mistook as more than flirting. i was 16 at the time and had severe PTSD caused by bullying, how else was i supposed to behave? As i have mentioned before to folk that attempt to help me until i can be taught adult behaviour in a way that doesn't kill my self esteem ie no implications or direct comments about me being selfish, stupid, child like in any way to be used then i am going to resort to the only behaviour i know.

 

Lots of parents have had to educate themselves about the SEN system, complaints system, red tape etc.

 

Alexis

[julie1]

Thanks for sharing your story hope he is ok? for me i wouldn't play with other children at nursery.

 

Alexis

Just to finish as i had to stop as my son was having a tantrum. He is 14 years old now and has just started at a special school. He is amazing and im so proud of him. He was upset as he is still getting use to his newly decorated bedroom. He still has language difficulities, his school describe him as having a policeman attitude to other children and adults, i think he just needs people to stick to the rules so he can manage socialy or he does not know how to react or what to say to people. I belive he will continue to do his best what more can we ask of our children with or without Autism.

[Karen A]

Just to finish as i had to stop as my son was having a tantrum. He is 14 years old now and has just started at a special school. He is amazing and im so proud of him. He was upset as he is still getting use to his newly decorated bedroom. He still has language difficulities, his school describe him as having a policeman attitude to other children and adults, i think he just needs people to stick to the rules so he can manage socialy or he does not know how to react or what to say to people. I belive he will continue to do his best what more can we ask of our children with or without Autism.

<'> <'> <'>

 

 

I just wanted to thankyou for your post.

Ben is very bright and is doing very well at mainstream secondary school since starting in September.

Ben also expects teachers and pupils to stick with the rules and could be described as having the attitude and expectations of an OFSTED inspector.

This is a high expectation in a mainstream inner city comprehensive where the average NT between the age of 11 and 16 appears to take joy in challenging the rules.

I come across lots of posts on the Forum about children that find it difficult to behave in school due to lack of understanding of social rules.However I have been wondering if anyone else here has a child who expects everyone else to stick to rules.

Fortunately the year head is very understanding.There is hardly a day that goes by when Ben is not reporting supply teachers,teachers or pupils regarding some issue however small.

 

[justine1]

<'> <'> <'>

 

 

I just wanted to thankyou for your post.

Ben is very bright and is doing very well at mainstream secondary school since starting in September.

Ben also expects teachers and pupils to stick with the rules and could be described as having the attitude and expectations of an OFSTED inspector.

This is a high expectation in a mainstream inner city comprehensive where the average NT between the age of 11 and 16 appears to take joy in challenging the rules.

I come across lots of posts on the Forum about children that find it difficult to behave in school due to lack of understanding of social rules.However I have been wondering if anyone else here has a child who expects everyone else to stick to rules.

Fortunately the year head is very understanding.There is hardly a day that goes by when Ben is not reporting supply teachers,teachers or pupils regarding some issue however small.

Hi my son Sam is the same loves putting out the rules,does this calmly at home bit gets very upset about rule breaking by others at school,we used to think its cute when he was little,but now he gets aggresive over rules at school so it is a problem.He also does not realise those rules apply to him.He also think the pavements in the UK belong to him if people walk behind us he gets so upset because he thinks they following us home!!!

[trekster]

Just to finish as i had to stop as my son was having a tantrum. He is 14 years old now and has just started at a special school. He is amazing and im so proud of him. He was upset as he is still getting use to his newly decorated bedroom. He still has language difficulties, his school describe him as having a policeman attitude to other children and adults, i think he just needs people to stick to the rules so he can manage socially or he does not know how to react or what to say to people. I believe he will continue to do his best what more can we ask of our children with or without Autism.

 

i love your attitude towards helping your son. Ive heard b12 supplementation has helped some kids with their language. Epsom salt baths has helped others. Im on b6, b12, fish oils, mag etc for my aspergers and it is helping me tremendously.

 

Alexis

[got the tshirt]

My Dd3 is also obssesed with rules, she got her self in such a state at school the other day because the wind blew something onto the "out of bounds" part of the playground and she was terrified of going and getting it back. She bottled this up for 2 hours and fell apart when I fetched her at the end of the day. I hate too see her sooo upset. The school are trying really hard but I don't think they will ever "get" her because she seems to be able to hold it together until she comes out of the door.

 

I also had a similar thing with Dd1 who used to tell the teacher if other children were doing something wrong. This made her very unpopular and resulted in bullying and a change of school.

[NobbyNobbs]

oops

Edited March 16, 2010 by NobbyNobbs

[JsMum]

oops

what the oops for?

 

Intreaged now,

 

dont take ages replying to this Ill be in suspence now.?

 

JsMumxxx

 

[trekster]

I hadn't heard of that plan. Tentatively, I think it's a good thing (so long as it doesn't mean phasing out me! ) Do you have any links to the plan/policy etc. who is has come from?

 

It's a proposal for the dsm-v criterion for autism. All over the papers recently but cant find a direct link.

[NobbyNobbs]

i was going to post an update before, but had to edit what i wrote and didn't have time to fix it so here i go again...

 

things are very very different now. Ks been at a new nursery for a term and is a completely different child. developmentally shes come on so fast you wouldn't believe.

- she can now talk in proper sentences (when the mood suits her).

- she has friends - she even got invited round to play the other day.

- she will ask a question if forced, but has to be prompted 'that is not a question, think what you want and then ask me a question'

- her physical development is much improved, shes put on weight, grown 3cms and can now run (very slow, on tiptoes) and can use a 3 wheeled scooter. she cant ride a bike with stabilizers (pedals) as this results in her sitting on it sobbing because its too hard, but is learning to use a balance bike. she can use a computer mouse accurately.

- she is drawing pictures that have a purpose when before she would only scribble on a page not understanding drawings are meant to be of something

- intellectually shes still obviously off the charts smart. the nursery are talking gifted child register. she can spell 3 letter words, and identify the starting letter of any common word, including those with soft sounds (flag etc), spots 3 letter words in writing and reads them

 

behaviourally shes still an absolute nightmare, we get an average of 1.5 good days per 2 weeks which is exhausting. good days are days when she only needs time outs to manage her behaviour. on bad days she has to be put in her room for her own safety. she still flaps constantly.

 

we're wavering on the edge of not knowing what to do now. if she carries on progressing then there can't be much wrong with her, but there are still an awful lot of worries. nursery give away the leftover cartons of milk on a friday and k loves to pick them up but when we get home she point blank refuses to drink it because it is nursery milk not home milk. we wind up hiding the cartons and putting it on her cereal when shes not looking! shes still incredibly sensitive to light and sound, she wears sunglasses almost all the time. nursery see nothing wrong with her beyond that they can't get her to do things as and when they ask, but acknowlege this must be a problem at home and will be a massive problem at school.

[justine1]

Hi

It is really great that she is doing well at nursery,especially with regards to her speech.I think given there are still some behaviour difficuties at home and that there are certain things(like running on tip toes and flapping her arms)she is doing,I would say you should go get a referral.It wont be long before she starts full time education and who knows how she will be as its learning new rules and different subjects etc.At least if she has an ASD and she gets the dx now she can eventually get support if and when she needs it,but if you wait the process can be long and you dont want to end up in a situation where she is unhappy and have to remove her from school.

 

My son is also very bright,most of what you have said about your little ones reading and spelling skills are exactly how Sam was at that age.He was also very quiet and laid back when at nursery he had many friends and was always invited to partys and tea that was until he was about 5 then he started to become aggressive and generally unhappy,and most children are afraid of him.

 

I do think if you compare her to other children and think something is not 100% then you need to see your GP and express your concerns.

[NobbyNobbs]

My son is also very bright,most of what you have said about your little ones reading and spelling skills are exactly how Sam was at that age.He was also very quiet and laid back when at nursery he had many friends and was always invited to partys and tea that was until he was about 5 then he started to become aggressive and generally unhappy,and most children are afraid of him.

 

I do think if you compare her to other children and think something is not 100% then you need to see your GP and express your concerns.

K was incredibly agressive and violent at her old nursery attacking the other children and systematically bullying a child with learning difficulties but i think she didn't realise it could be any other way. we're really worried about her starting school because we have to get it right or she'll be right back to square 1 and she'll be expelled (she was almost expelled from nursery which i didn't even know was possible!). she is already in line to get support in some form as shes on early years action plus, and the people involved with that are aware she will need help with the transition and managing her behaviour.

 

we asked about a dx, its a no-go until shes started school apparently, so we just have to hang on and carry on 'evidence gathering'. shes under child developement too, so i think we're doing everything we can. the one thing i dont want to do is get so used to her behaviour that i stop seeing these problems. things like this help with that because i write the list and realise that some of the things we think are normal and progress aren't.

[JsMum]

J main issues in nursery where social, behavioural and mental health, he excelled in all his academic lessons, he is very bright, the LEA cant refuse to assess her for a statement on grounds that she is too bright, my son is in a specialist school for average to high intelligence, as you say getting the ballance is critical, but so more when they first start school, if I knew then what I know now he wouldnt of stepped foot in a mainstream primary school without a statement, they do not need dx but their needs to be identified, you have a lot of things in your last post to show she needs one to one support, without that there is a very high risk of exclusion, also a nursery enviroment is very different from a primary school enviroement, my son started to struggle academacally in yr 2 when he had to put his thoughts on paper and he struggled with Undx Dyslexia at the time, J went from early years plus to primary school where he went on School action, all this gave him was half an hour a week for speech and language support, no one to one or anything, when you compare what he has now which is High level support its a wonder he coped at all in primary school, so do all you can to ensure she has the right support from day one of starting school, from reading your last post do you think she will need support in PE due to her difficulties riding a bike and running on tip toes? I would look into an assessment of SEN for primary school.

 

JsMumxxx

 

[Tally]

I actually think that in this situation, waiting to assess may be the right thing to do. As she is making so much progress at the moment it's going to be really hard to tell what difficulties may be to do with ASD and what are behavioural.