aspergers tendencies

[rummum]

I don't know if you remember but the EP said daughter had aspergers tendencies.

At parents evening daughters teacher said that for daughter to move up a 'level' in English she needs to be more discriptive... ie.. daughter will write I walked in the wood.. the teacher needs to know what the woods was like and how she was feeling... I asked if this could be part of her aspergers tendencies, and she said it could be... (could it??) Now daughter doesn't do small talk let alone talk about her feelings! so i imagine she would find this hard..I feel that the school should be supporting her in this area.. as it obviously doesn't come easy to her... Also she needs to learn about emotions and feelings...

How have your children learnt these things??
has their school been supportive??
do your children have a statement

I have an appointment with the head tomorrow morning...
any advice will be appreciated

Hi rummum,

ds has a provisional dx of AS. He is only 5 and at the moment is where he should be academically. He does however have diffulty recognising and expressing emotion appropriately - he particularly has a problem with anger and sadness.

He does have a statement and he got this in may this year - the paed only said he thought he had AS in Oct so this has had no bearing on the statement. He had a really hard time last year when he first started school and ended uo being excluded 3 times. The school were crap and made things much worse. In the end we took him out and put him back in preschool.

He was backyeared and started a new school from reception this sept and he is doing really well. He started fulltime today and has had an excellent day. He has fulltime 1:1 including lunch and breaks and I know he would not cope without this support. The school are great but it is the statement that really makes the difference to the amount of support he gets - the LEA fund him for 15 hours extra support a week.

IMO the school should be providing her with support in the areas you described. My mum is a SENCO and I know she does this type of work with children who need extra support with things like emotional literacy.

My advice about the meeting is to write down all your concerns and questions tonight and take the list with you tomorrow. I know that I never remember everything I want to say or ask otherwise.

Hi rummum, I would say that the difficulty explaining her feelings could certainly be down to her Aspergers. Many AS children have difficulty understanding their own emotions let alone describing them.
My ds's school is incredibly supportive, they are doing all they can be, but still feel that a 1-1 who has previous experience of working with autistic children is still needed, hence why they are going for a statement.
When my ds becomes angry, sad, excited etc, I often discuss what emotion he is experiencing to help him understand, at the moment I'm not seeing any improvement but he's only 5 so he's still very young.

Do you have a SENCO at your school that you could talk to about your concerns?

thanks for getting back to me amynnixmum... Daughter is in year 5 aged 9.
So what sort of questions should I ask...

Hello macwoozy
we crossed posted.....
The head is the senco...

I'm not sure of your history as I didn't see your other thread but basically i would want to know if she has an IEP, I would want to see a copy of it and preferably be given a copy to keep at home. DS's teacher has 1/2 termly meetings with me to disceuss progress and to update his IEP and I get a copy. I also get to have a say in what I think is going well and what I think needs improving. I would want to know what they thought her needs were and how they were going to meet them. Would they be doing emotional literacy with her and would it be on a 1:1 with the SENCO or with a SN assistant or would it be up to the teacher. I would push for 1:1 if she is not getting it. I would ask how much extra support they feel she needs and ask them to request a statutory assessment from the LEA. I would also suggest that you contact the LEA yourself and request they they do a statutory assessment - you don't need the school's support for this and a statement is legally binding so they would have to abide by it. MeerkatsUnite always says that no statement equals no support.

thanks amynnixmum...

Daughter has an IEP... (that I instigated)
I sat with the Head and EP and had to listen to the Head say how concerned they had been about daughter.. When infact.. as she is no 'problem' I doubt they even know she is there!!

She was meant to be having 1:1 for her fine motor skills which turned out to be in a small group.

I feel I am going to be fobbed off again.... [sigh]

Good luck for tomorrow. Let us know how you got on.

I'm just bumping this for the evening girls...
I'm off out for a curry..
will be interested if anyone else has some good ideas for support from the school...

Yup sounds like AS1 Sam much like that, but hey you know- he's so good at the factual stuff (and lying too, but let's not got there ) that it balances, in it's own way.

What you could do perhaps is (this is loosley based on a technique we're using with Sam recommended by BIBIC- very loosely!) give her small tiles with descriptive words written on (eg crisp, fresh, crackly, biting for a frosty day) and then perhaps get her to select those that she feels describes a situation. Start by giving her only relevant words, then eventually allow her to select from a pile. This owuld work with schoolwork, but also when you are just chatting etc.

The emotions things is different. Sam was given a mask at his last school with a smile on one side and a frown on the other, but FGS! He's not think, he understands what the mouth shape means, just not how it feels IYSWIM. Haven't cracked this one yet, didn't realise it was a problem actually until we realised when he was squishing his bruv yesterday that he couldn't tell he was crying, not laughing

I suppose you cold do a similar thing with the word tiles for the emotions? Does she have a visual timetable? I was wondering if yu could work together to find pics of various emotions, then a few times a day get her to velcro how she is feeling up next to what she is doing (doncha love sticky velcro? ) At least she will learn to identify and consider her emotions, which is a key skill in describing I guess.

Sorry if suggestions complete rot, BTW

Ds1 is 5 and has high-functioning autism. Until very recently I would've said that he had a fairly good understanding of emotions but I now realise that I was wrong. He had a language assessment recently and one of the tasks was to describe a picture of some smiling people who were watching a film. The SALT asked if he thought the people liked the film they were watching. When ds1 answered "yes" I felt almost smug - until the SALT asked him why he thought they liked it. Instead of saying "Because they are smiling" or "because they look happy" he replied "because they are still sitting in their seats."

He is able to recognise some of his own emotions, eg if I ask him if he's happy/sad he will answer either yes or no. I doubt he could cope with describing how he felt about the woods. Another element to this is that ds1 still often assumes that other people know what he is thinking and so in his opinion describing thoughts is a completely pointless exercise.

The school is generally supportive. The problem (as in many schools) is that his new teacher has only a limited knowledge of AS/ASD, although thankfully she is very willing to learn. In Reception ds1 did some social skills classes in small groups where they learned the basics of emotions and things like turn-taking.

He hasn't yet needed a statement, although obviously that may change as he gets older. Last year he had some hours of 1:1 with an LSA but towards the end of the year he was very keen to try to do things independently. This term he has no LSA but still has support when needed from the classroom assistant.

It may be worth asking the Head about the possibility of arranging social skills lessons. Apparently these are also useful for children who don't have AS/ASD so the Head shouldn't be able to fob you off with excuses like "It's not worth it because we only have x number of children with AS/ASD".

Thanks girls........
I asked daughter recently what a happy person looked like and she said they have long eyelashes and freckles!! and angry people have straggly hair!!..
daughter is 9, and I never realised until the EP picked it up.
I will let you know how I get on... thanks for the ideas.....

I must be a very angry peson then

OK.. just got back from a meeting with the Head/senco.. and I am really none the wiser of any help daughter may get... Apparently she needs to be formally diagnosed before they can do anything. They do a social skills group but this wouldn't be beneficial to daughter.

Will contact the OT again to arrange more appointments with them.

thanks for you help

Rummum

I was wondering also about your DD seeing a developmental paediatrician as well as the OT. Have no personal experience of AS but was wondering if such a person can diagnosis AS.

Am sorry you did not get far with the school - as they rightly point out she needs a formal diagnosis.

I would try your best to get a diagnosis for your DD and once you have this then contact your LEA in question with regards to getting DD assessed for a Statement. Do not rely on school alone to do this. Unfortunately the onus is on you the parent when it comes to getting a statement. Having no statement means there is little to time given in terms of oen to one teaching for instance.

IPSEA are a very good organisation and you may well want to talk with them at some stage. Their web address is www.ipsea.org.uk.

Also the NAS may be helpful to you as well.

Hi MeerkatsUnite, I contacted the OT's manager today and she is going to ring me back personally tomorrow, I told her for daughter to get help she needs to be formally diagnosed and she will be contacting daughters paediatrician... who can diagnose.[phew]
hallabloodylulla

Daughter is also waiting to see an behavioural phycologist..
How do I know if daughter is 'needy' of a statement??
I would like her to have someone to help her (maybe 1:1 with social skills, emotional skills and to prompt her with her work) not all the time.. just maybe 1 hour a day (I don't know really)

still think its a bit off that the head/senco sat there while we were with the EP and listened to all the difficulties that daughter was having and then does nothing to help!!

Thanks for your reply

Rummum

Rummum,

Good for you for phoning OT's manager today - I certainly hope that he/she will call you back personally tomorrow.

Purely based on what you have written she does need some extra help in class. The surest way to ensure that she gets all the help she needs (and this help in a statement is legally binding) is through a statement. The LEA will fund a set number of hours per week - I would hope for 2-3 hours per day. If you want to get what you have proposed then following the statement route will probably be the only way forward.

I would advise you now that it can take up to six months for one of these things to be issued and it can also be a drawn out process emotionally as well.

hi MeerkatsUnite
Are you a teacher??
just getting Daughters difficulties noticed so far have been emotionally draining... I swear I look ten years older already
Rummum

Hi Rummum,

No not a teacher. Am a now 38 yr old SAHM whose been through this statementing process and come out the other side.

We as parents were not listened to for a couple of years either prior to DS starting school. After I received DS's statement though his reception teacher came up to me and said, "I felt sorry for you because nobody listened!". He is doing well with the support given (10 hours per week hence my comments that your DD should get at least that if not more).

You'll never guess what!!!!!!!!!!!

The OT has rung already and daughter has an appointment for 19th of December... (she will ring me in there are any cancelations in the mean time...)

she will speak to the behavioural phycologist to find when daughters appointment will be...

and she will imform the paediatritian of the latest developments and she should be in touch..

rum-pushy-but-nice-mum

Meerkats says whoohoo!!

Hi rummum I have a dd aged 10 in year 6 dx with AS aged 7. Her dx took 6 months from referral from GP, and involved reports from Paed, SLT and Senco. Can you put pressure on the senco to take more of an interest in ASD, take books/leaflets/strategies for teachers etc. and suggest she may find them of help. Your dd does not need a statement to get support at school, the school have a duty to meet any childs special education needs, I would put pressure on them and suggest you read up on your local LEA's SEN code. The school can get extra funding from the LEA to help with SEN without statementing through action/action plus.

DD does have difficulties with abstract meanings etc currently she is answering questions with one/two correct word answers but is marked down because she is expected to expand more on the answer, she can't comprehend this as she takes things literally. Her ASD outreach support worker is going to start working on this with her.

Also has great difficulty with understanding/expressing/modifying emotions, and has been on a social use of language programme at school for 3 years but can still not generalise emotions she has learned into the natural environment/playground. We are using other strategies as part of a home programme we have been running since September with much more success. HTH

rummum, pleased to hear you are getting somewhere We had no trouble getting anyone to notice DS's difficulties but it did take a YEAR from dx to statement...... but we got what we wanted so it was worth it.
Monica, nice to see you posting, been wondering where you've been.

Hi rummum,

Good news about the appointment with the paed. I just wanted to say that you don't need a dx to get help at school. My ds started school last year and things went really badly. We requested a statutory assessment which the LEA agreed to and we got the statement through in May this year. At the time ds had no statement and no-one (including the paed) seemed to know what the problem was but since there very obviously was a problem he was still entitled to the help.

He gets 15 hours extra funding per week from the LEA as part of his statement which means he gets the F/T 1:1 support that he needs. Last time we saw the paed was in Oct this year which is when he told us that he thinks it is AS but ds won't be assessed for AS until he is 7 so that's the earliest he will get a dx if he gets one at all. The paed says that we should trea him in the meantime as though he has AS as he should respond well to those sorts of strategies.

Sorry I meant 'at the time ds had no dx' not 'no statement'.

What can I do?? The head said there was nothing they could do until she had a dx... she suggested things we could do at home that we are already doing.....the head sat there when the EP went throught all the difficulties daughter is having and will have in the future (she didn't hold back!) and not once did the head suggest that we got a dx straight away or she couldn't help.....
daughter goes out with a small group to help with her fine motor skills but thats it...

The head did send home a leaflet yesterday with daughter about a asd surgery.. it was from 4:30 till 7pm TONIGHT but it is too short notice to go..

I know they are useless at the school .. but what can I do??