Aspergers?

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AMLK

407 posts

184 months

Monday 26th October 2015
quotequote all
Thank you so much for your helpful response.

The dog poster is great, definitely worth trying that. We recently bought a car from a family that had a very excited medium-sized dog who was used to playing with kids. Anna was petrified, but the owners were fab. The put they dog in it's crate, then the mum spent time with Anna explaining how to react with dogs. This has really helped her dealing with dogs when we are out and about, so our next step is her starting to interact with them.

The cleanliness/hygiene issue has a valid base which is why it is hard to control. I got severe food poisoning a few years back from a restaurant, so we instilled in her the importance of personal hygiene then to ensure she didn't catch it. I also work in the nhs and part of my role is infection control so she knows it's importance, unfortunately she takes it too far. I don't have too much problem with this except for her choice of career. I think this is something to worry about at a later date.

A job in IT would be perfect for her as she is a whizz with computers. My hesitation in this comes with my husband's career. He is an artist creating video games, he his very good at his job, but his career history has been very hard. He has work with too many companies that have gone into liquidation hence being made redundant a lot. Finger crossed all is good at the moment. But this has made life very hard for us at times. Anna would happily follow in his footsteps, but I don't think she is emotionally strong enough to go through what my husband has, hence my reluctance.

My biggest concern is her social side. She was talking to classmates today, explaining that she is being tested for ASD. One classmate response that there is nothing wrong with her, that she is very clever but isn't very good at interacting with people. I think she has summed it up perfectly!! At least they accept her, bonus of a small class in a village school!

Thanks again for taking the time to respond to me, I really appreciate it.

cwis

1,147 posts

178 months

Tuesday 27th October 2015
quotequote all
It's a pleasure. I wish I'd been diagnosed in childhood - it would have saved me massive amounts of grief.

A couple of thoughts:

The hygiene thing is tricky because she is backing it up with logic but making conclusions with a limited set of data - but you could use some logic back and add some data to modify her conclusions.

How about telling her she needs to "train" her immune system with controlled amounts of dirt? It gives her control of the circumstances when she has to challenge her OCD, a good (and more importantly valid) reason to do it, and possibly most importantly won't conflict with her existing conclusions - I would hazard a guess that she's pretty stubborn...

One thing that helps me with sleep - exercise.

Bed time appears to be when the issues in life and small conflicts from the day (and large ones from the past) rise up and start circulating round the brain. Should have, could have, etc.

Before you know it you're lying there with a tired body and a wide awake brain thinking self defeating thoughts. It can be very frustrating (which makes it worse once your mood worsens) and can be impossible to turn off.

So - no sleep.

Exercise (for me three times a week minimum) turns it all off. It's uncanny!

If Anna fits the typical Asperger's mould she will have a really high pain threshold and immense amounts of endurance and obviously the stubbornness to push herself hard - as long as she enjoys what she is doing.

I cycled and swam in my youth (up to county level so lots of training) and had no problems sleeping. Issues began for me after I left home and stopped regularly exercising.


AMLK

407 posts

184 months

Wednesday 25th November 2015
quotequote all
Sorry I have not updated on here for a while.

We finally had our first appointment last week. We were there for nearly an hour as she asks ton of questions about her life, feelings, health etc. She said it was much easier because Anna knows exactly what is going on so she could be more direct in her questioning. At the end of the consultation she said that Anna definitely has some traits that indicate ASD, particularly Aspergers.

We discussed the merits and drawbacks of going ahead with official testing and diagnosis and 'labeling' her with ASD. In the end we decided (with Anna's agreement) to go ahead. I know there is much less stigma these days so I hope it won't be negative for her. I just feel that I am not mentally strong enough do deal with issues she may have as a teenager without professional support (I know how hard high school and Uni were for me).

On the sleep side the consultant asked if we would like to try Melatonin. Anna decided that she would like to as she hates it when thoughts torment her when she is trying to sleep. We started the Melatonin on Monday night and it had an immediate effect on her. Within 1/2hr of taking it she was really sleepy, slept though the night and woke bright as a button. Same last night too. I feel like I have my true daughter back, last night she was much calmer and affectionate towards us, something we have not had for a very long time. I hope that this is not a coincidence and she continues to be a happier child.

I have a meeting at school tomorrow with the head, learning support teacher and her class teacher. Anna had a one to one meeting with her teacher this week and apparently she said that she is really proud of Anna. She has being working really hard on her socialisation and friendships and things have been going well. Fingers crossed we are over the worst and the knowledge we are gaining will help us continue in this positive atmosphere.

Thanks for all you help and support.

oldbanger

Original Poster:

4,316 posts

237 months

Wednesday 25th November 2015
quotequote all
Good to read that the melantonin has helped. I've not progressed any referrals for mine as the school wouldn't support a self referral for the younger child. The older one's counsellor asked that I have her assessed for ASD, but at this stage I still have the self referral hurdle. There is a mountain of paper to produce first.

Both kids are calmer than they were in the summer, and I think partly it is down to attempts to follow the advice of a great little book "The Explosive Child". Both kids still have their blow outs but it's definitely less frequent, which is great as I am totally shattered and the husband is very grumpy.

dhutch

14,198 posts

196 months

Wednesday 25th November 2015
quotequote all
Spotted this thread in passing, but I also have formal diagnoses of mild Aspergers and PDD-NOS.

I am now 28 and would consider myself successful and relatively well integrated into society!


You would be as well speaking to my parents about what I was like at an 8 year old then me, however I will do what I can to add to what's been said before, again with the heavy caveat that its a very wooly thing and effects everyone quite differently. Sometimes I read bits about aspergers and think "yes, exactly, that's exactly how it is" and other times I can be really quite taken aback by what is said be cause it isn't anything like me and not something I can relate to at all. Comparing your child with another is always risky, but then the pool is fairly small, and poorly defined, even more so.

Initially I went to the local primary school, which was quite large, and fairly strict, with the headmaster liking things 'just so' and certainly as my parents tell it, the fact I stuck out really got on his wick. I dont really remember it, but I guess I probably was a bit left-field and troublesome. I then mis-judged larking around with one of my friends and ended up giving him black eye, for while I was suspended for a week, which I understand is the maximum suspension that can be given without approval from the governors. When my parents took my round the boys house to apologise, he assumed I had come to play! However I think it acted as a catalyst for what was all ready becoming an issue and my parents looked for another school. He also took umbridge at the fact we didnt have a TV at home and blamed this for my lack of interaction sufficiently much that my parents even bought a TV! It didnt get used that much however, which I like, and still dont watch much telly, especially after I found forums.
The new primary was much smaller, only three classes in the whole school and around 20 per class, quite a focus on enjoying school, music, circle time, etc. It was built as an over-flow school for a town during the boom and never grew any bigger, but was ideal for me.
I also got a teaching assistant who worked with me quite a lot, I don't know the details of how this was done or funded if I am honest, or if she was technically mine or simply due to the larger age spread of what was now the top class. Either way, she worked one to one with me quite a lot, as well as also doing odd bits with other children, enough that certainly at the time I wasnt really aware that I was getting significant/any additional treatment, including occationally coming out of class to do my own thing, which even at the time was a bit weird, but maybe just gave the teacher time to cover bits of the syllabus is was going to mess up! I dont know. I didn't have her all the time thought, and do also recall spending a fair amount of time out of class, either having been kicked out, sometimes causing my mother to have to collect me (which was a pain for her, as shes a GP) and latterly also just spending time watching and talking with the caretaker/cleaning lady or reading a book under the stack of chairs in the hall chair cupboard.
Mainly I had fairly good friends, we used to have carpet tiles to play with at break and I would make large carpeted areas that we the played on. But I had good friends, boys and girls. I would play up to the audience a bit sometimes, and it wasn't unheard of me to run across the class room on the table tops for a dare, but I think thats part of life really....

I then left primary a year early and was found a place at a state funded singlesex residential special school. The only other of its type in the area was really fairly horrific in terms of being a school I understand, but at the time the one I went to was really very good I understand, run by a headmaster with a real passion for turning kids around and for which I owe a huge deal. I hated it in a huge number of ways, I hated not being at home, I hated the structure and the in ability to do your own thing in the evening or all the cool things I used to do at home, but also at time I was a right little sh it and they had the staffing levels and understanding to deal with it effectively if not in the way that was most fun for me. I was only ten on joining, so details are hazy, but for much of it is was fairly normal, timetabled lessons, standard curriculum etc, all be it with classes of only around 10 per year. I also occasionally got put into skip-lock by a male teacher and or pinned to the floor, I couldn't given examples of what for, but I expect Mr Eggington (who I still keep touch with) could. It still recall to this day him throwing my stuffed penguin (which I got as a leaving gift from my primary school friends) at the hall floor one night I was found out of bed and its eye coming off, I still have 'Eaton' the penguin. I also recall on another evening di cking around with the salt and pepper which had been left out in the hall dinning area and getting pepper in my eye and having no water to rinse. Man that hurt!
They had a grading system, and each week we where scored A-D on behaviour, and the evening activities where selected on order of grade, so if you where bad you got the ones nobody else wanted to do. Fortunately while Mrs Sparks' art-attack inspired under prepared activities where fairly poor Mrs Jones' was awesome and her "small games" activities (monopoly, cards, top trumps etc) where quite ok. It took me a while to get used to getting better grades and being able to do more of what I wanted...
Towards the end however it become much more bearable, and I got to go sailing on certain evenings, off-road motorbiking around the ground in the evening, and all sorted. I also managed to get a good set of GCSEs, an A, 6 B's a C an D and an E. The D & E being in English.

Outside of school, generally, was much better I think, and my parents where great at finding things for me to do, such as having buckets of water in the kitchen which I would syphon water from one to another using tubes, couple of different size of tube and you could have great fun trying to keep it all in equilibrium till the bowl balanced on the top of the draining rack didnt get topped up fast enough, or fell off! However I do also recall a family walk on which I was basically dragged kicking and screaming for about half a mile to get me back to the car, to the extent that some passers by offered to help as they 'had training in dealing with children' opps! Mum used to go to church on Sunday, and took me and my young sister and brother. At about 8 I had had enough of that, and found if I left the car really fast I could get up the tree in the carpark and she couldn't get me down again, I spend a long time in that tree/carpark but after about a year and when it was coming on to be very cold and wet outside for an hour she got the picture and stopped taking me. I stayed at home with my dad who doesn't go to church. This was certainly the norm by the time I started secondary and was fortnightly boarding.

The local 6th form collage had taken an aspergers student from my high school a year before which had gone OK, however is was clear that he was one of the few they had taken, and after several meeting where they tried to label me the same at Gareth, a change of plan was needed and I ended up at the local catholic school of all places, in the 6th form there. They had had other aspergers students, and where great, but also a brave move by my parents I think as all of the students, bar six from one other school who obviously knew each other, where from the school itself, so I really did have huge standing start compared to them. I also had to resit my English language GCSE to get a C or above.
However I settled in with some of the other other slightly aspergers/dyspraxic/whatever kids in the corner of physics geeks who listened to rock music and watched the rather hot slightly goth girl while talking about computers and playing poker at lunch for pound coins. I had a share of a teaching assistant then too, not in class, but I used to slope off into a back-room with Mrs Morton and we somehow managed to get an Essay about 'Was Hamlet mad' out of me for my dreaded Shakespeare coursework, and followed it up with a good strong C in English (I might have got a B apparently, but didnt need it, and was put in for foundation tier as the low-risk option) I have never used my, questionable, knowledge of Shakespeare since. My spelling is spelling isnt perfect, and I find proof-reading very hard (my brain sees what I wanted to say, not what I typed) but with spell checkers and predictive text I can knock out the above without much effort.

My high school very much worked on treating the class the same, and us individually rather than anything else and didn't push formal diagnosis. However to get the teaching assistant to help with my English I needed formally diagnosing which was done by and Ed-Phyic from Wales somewhere who came and visited me at my parents on a couple of Saturdays. This was almost the first I knew about Aspergers existing or me having it, but he was very good at coming up with this that I did, and doing tests that highlighted my relative strengths/weaknesses which going forward did help during a-levels and early uni life. It also highlighted that Mum suffered the same, in fact he went on to say he was staggered that she had managed to do as she had given basically no external support. Seriously driven woman alert!
I often now meet people, such at my ex's father, and think 'well he is obviously fairly aspergers' never diagnosed, obviously! Not sure he knows it today, but he's much more aspergers than me, and made a very successfully career out of being a computer hardware expert, regularly flown internationally by IBM at one point.

I will somewhat cut it short there, as its late and I expect the above brain dump of my life is more than enough. However I went onto get ABB in DesignTech, Maths and Physics. Managed to select Engineering and my chosen future, went to Loughborough and got a 2:1 masters in that, and have spend the last five years working as a Design Engineer for JCB's Loadall division designing new and improved Telescopic Handlers, including being sent to India to as the only UK engineer supporting a project to design the first ever TeliHandler in India, and was made Senior off the back of that. I have owned a house for three years, letting our two of the three rooms to lodgers, maintain my own cars, really enjoy narrowboating, held down a really cracking girlfriend for nearly five years. And generally co-exist in a slightly engineering and historic canal boat related pool of people!

My ability to detect and recall detail in second to none, my intuitive engineering understanding and feel is marvelled even by engineers, and even by boss seems to like me although he does fairly often suggest that if I want to get further in what is a fairly formal company I should take certain things more seriously and have a slightly less cavalier attitude to how others perceive me and the way I work. I expect in part that comes from having to deal with what people thought of me as child. I am old enough now that I have no doubt in my own ability, and know that my strengths outweigh my weaknesses. To most people, I am just 'an engineer' at which point, I will close!

https://www.youtube.com/watch?v=60P1xG32Feo


Daniel

dhutch

14,198 posts

196 months

Wednesday 25th November 2015
quotequote all
I also had a thing about clocks in my room and clothes being comfortable as a child, and still sometimes spend a lot longer lying awake at night 'thinking about stuff' when I would much rather turn off, and then thinking about thinking about stuff, and then thinking about that, and..... Mum used to tell me that being in bed was nearly as good as being asleep and than if I just lay there it would be ok. Then I would fall asleep.
My preference for things being comfortable and nice remains, but a decent pair of jeans and a t'shirt suffices, at which point, I wear the same thing anyone else does. As long as its not an t'shirt with a lot of embroidery or one with a lot of stiff printing on the outside of it or a cheap poloshirt. Top range mattress and Egyptian percale cotton sheets anyone?


Daniel

TVR1

5,460 posts

224 months

Thursday 26th November 2015
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I spotted this thread in passing and how timely. Any help would be gratefully accepted. I'm perhaps thinking of asking Mum to sign up to this thread. Mum is my sister in law. This is a post she made just yesterday on FB. It deeply saddens me that I can do nothing for my nephew and that my 10 month old daughter won't be able to meet what is actually a lovely lad, until I'm sure she will be safe around him.

I must point out that my SIL is a senior advisor/lawyer on human rights at the Home Office, so not exactly inarticulate nor unaware of the machinations of beurocracy Names redacted as much as possible...

I have recently had cause to contemplate my year and J***in particular.

In May this year, after J***repeated exclusions from school, childminders and childcare, his increased levels of violence and my getting to the point where walking under a bus seemed to be a perfectly reasonable option, I took the unpleasant decision to voluntarily abandon my child to the care of the Local Authority. J***went into foster care for eight weeks, during which time I spent untold amounts of time trying to work out who was dealing with his case, who I needed to discuss his care with and how long he would be away. During those eight weeks, the authority failed to do even the most basic assessments. He was finally returned to me in July, with the agreement that I would be provided with two days per week respite care by the local authority, ostensibly to prevent the possibility of his return to care. Despite some minor efforts and some reimbursement for childcare that I had arranged and paid for, six months later, I have still not had any days of respite provided by the local authority. I have now had to make a formal complaint to the Local Authority, but I suspect that the answer is that the cutbacks to services are to blame.

Now, at this point I fully expect that people will arrive at the judgement that I am just a rubbish parent, who is unable to cope. Don't worry, this is not a novel or uncommon conclusion. I have sat through countless meetings, where I was vilified and devalued as a human being because of my son’s behaviour. There was one particularly important meeting in July where a senior manager from the Local Authority informed me that I was an incapable parent, and that I had obviously failed to 'attach' to J***when he was a baby, which was the sole cause of his current bad behaviour and my inability to control him. She had three special educational needs specialists and a child psychologist attending that meeting who had all worked extensively with J***and they supported the view that J*** has a complex medical condition. Even the foster carers' were pointing out that he had significant behavioural difficulties. Unfortunately, she chose to ignore their shared opinion because at that time he did not have a piece of paper with a formal diagnosis on it; instead, she decided that he should remain in care for at least three more months. It always amazes me that those people who are so unwilling to accept professionals' opinions in the absence of a formalised diagnosis, are often the first to impose their own (often unprofessional) opinion about the probable causes.

There are probably people who didn't know that J***went into foster care: that is understandable, as the only people who did know were generally the ones that visited me during those months. I got to the point of sheer exhaustion in May because when the childcare runs out and people refuse to look after J***, I have nothing else to fall back on. J*** quickly learnt that having a meltdown gets him out of school and gives him time with mummy and so the 'punishment' became a reward. Let me put J*** behaviour into context: I have been kicked in the face, punched, bitten and attacked on a regular basis, with a few pairs of broken glasses as a result. V*** has suffered several black eyes, various bruises and other injuries. G*** usually manages to get out the way, but has also been bitten, punched and kicked. He has had a one-to-one specialist helper, who he adores, since July 2014 and he often attacks her. He may be six, but he is in the body of a study eight or nine year-old, has the vocabulary of an articulate teenager (not necessarily an oxymoron, if you discount the hormones) and has the behavioural and emotional development of a 2 year-old.

Putting him into care was probably the single most heartbreaking decision that I have ever had to make. I put him into foster care not as a punishment, although it may appear that way, but as protection and to provide some relief for myself and his sisters. The ADHD causes meltdowns that he cannot understand, let alone control. He is impulsive and has a tendency to say and do wildly inappropriate things, often putting himself and others in danger. It also means that once he has finished, he has forgotten what he was doing, so any punishment is pointless. The Asperger's means that he has no empathy or understanding of the damage he causes to others. If you try to explain to him by saying: “How would you feel if someone did that to you?” his response is invariably: “but they didn’t, did they?” He certainly doesn’t understand the fear that other children have towards him, just in case he attacks them for no reason, which he often does. He often invites himself to his ‘friends’ houses, but he has no friends and is not invited to any of his peers’ parties or outings because people are scared of him.

All of thise means that I am the parent who has to deal with other angry parents, whose children he has attacked, spat at, stabbed, punched, strangled, or otherwise abused. I am the parent who is labelled as failure because her child cannot behave. I am the parent expected to keep my son away from 'polite society' because he does not conform. I am the parent expected to use a medicinal cosh to sedate him, despite the fact that he is still only six. I am the parent who has to go on training courses to learn new ways to cope with his behaviour. I am the parent who is left to deal with these things alone, because they cannot cope with him, but they assume that I can. Well, sometimes I can’t, but it is not through any lack of effort.



Edited by TVR1 on Thursday 26th November 11:18

cwis

1,147 posts

178 months

Thursday 26th November 2015
quotequote all
TVR1 said:
The Asperger's means that he has no empathy or understanding of the damage he causes to others. If you try to explain to him by saying: “How would you feel if someone did that to you?” his response is invariably: “but they didn’t, did they?” He certainly doesn’t understand the fear that other children have towards him, just in case he attacks them for no reason, which he often does. He often invites himself to his ‘friends’ houses, but he has no friends and is not invited to any of his peers’ parties or outings because people are scared of him.
I can't imagine the levels of frustration, anger, loss, guilt etc etc you have and indeed are feeling. You have to do what's best for all concerned and there is no right answer - my heart goes out for you and your family.

I'd like to help in a rather tangential way - it's the only thing I can do and that is to assist in your understanding.

The description of behavior above I've quoted: That's not Asperger's.

My understanding is that due to difficulty in understanding facial expressions a person with Asperger's can find it difficult to understand what another person is feeling, and therefore empathize.

It's not the empathy that is the issue, it's the social communication.

Here's a scholarly link to a scientific paper - the abstract is readable online.

http://link.springer.com/article/10.1007/s10803-00...

It shows that sufferers show a HIGHER emphatic response to distress (i.e. - a clearly signaled emotion) than the control.

Other studies show that suffers may be affected so highly by the feelings of others that they do nothing - it overwhelms them - something to do with a fear response.

Here's a link:

https://seventhvoice.wordpress.com/2013/11/16/new-...

Lack of empathy (even when emotions are explained) is more likely to be a different disorder. I'd hate for you to be barking up the wrong tree if it came to treatment - Asperger's suffers respond well to Cognitive behavioural therapy for example, but CBT may be less effective in dealing with other personality disorders.

5678

6,146 posts

226 months

Friday 27th November 2015
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I don't have a massive amount of time to reply to this at the moment, but will try to later. There is also a lot here I want to read.

My 4.5 yr old has an ASD diagnosis and we have been told it would have been diagnosed as Aspergers in the old world of diagnosis.

Life is tough, but we are learning what works for him and for us.

The initial symptoms the OP mentions do sound to be on the spectrum and a lot are similar to those we see in my Son.


Foliage

3,861 posts

121 months

Friday 27th November 2015
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Being ASD is both fking awesome and fking st at the same time, its extremes of the human condition.

Im have ASD and at 36 ive come to realise that some stuff that other people find hard, I find easy (programing, errors in stuff, maths etc I just see it) and other stuff that I find hard other people find easy (flirting, eye contact, making friends, connection with people), but its extreme and important stuff.

I don't really want to offer any advice except to say, you can help her progress through this, you will help her make herself into a great person. Focus on the positive aspects of the aspergers, the fking awesome as ive termed it.

She needs support but you need support to, and lots of us are here for you. And the 'geek' community is also a great place to seek guidance.

oldbanger

Original Poster:

4,316 posts

237 months

Thursday 10th December 2015
quotequote all
Thanks for all the replies.

I have spoken to the GP about the older child but again, they apparently can't make a referral. So I will have to sort it myself. And they can't offer anything else until she's been assessed as the outcome will affect what services she can have,

Meanwhile, things really are rough going.

The anniversary of their birth mum's death is coming up in 2 weeks. The older child has been worrying about it since November and the younger one has been really affected - to the stage of having huge meltdowns again, for example yesterday she started kicking me in the face and telling me that "God doesn't want you to live" when I tried to put her to bed. It doesn't help that it's the first week of a new class teacher as the old one went on maternity leave last week, so she is quite distressed in the morning about going to school too. It's been really tough to be honest and I am starting to feel quite shell shocked.

I am arranging bereavement counselling for the older child via school, will go speak to the shool again about the younger one, but in the meantime I'm not in a good place myself. I am usually the reliable one who gets everyone else sorted, so now I am struggling I appear to be on my own.


hman

7,487 posts

193 months

Thursday 10th December 2015
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Chin up mate, you have a very tough task but you seem to be doing everything right as far as I can see!

Keep up the good work, its going to be a tough time with all the reminders of past tragedies and also the changes at school but things will settle down and then it will be Christmas- which I hope will be a happy time for all of you.

oldbanger

Original Poster:

4,316 posts

237 months

Thursday 10th December 2015
quotequote all
I don't seem to be able to get support for myself, I appear to have wound up quite isolated instead. My own lack of resilience is undoubtedly having some knock on effect with the kids.

hman

7,487 posts

193 months

Thursday 10th December 2015
quotequote all
Have you spoken to your family/friends etc. to arrange for assistance with your responsibilities so that you can have some time to gather your thoughts.


My two boys keep me and the mrs extremely busy and we have no family near us, we take them to play with their friends and to the indoor activity centres if we want a bit more of an easy day.

maybe this would help:-

https://www.google.co.uk/webhp?sourceid=chrome-ins...

mad4amanda

2,410 posts

163 months

Thursday 10th December 2015
quotequote all
oldbanger said:
I don't seem to be able to get support for myself, I appear to have wound up quite isolated instead. My own lack of resilience is undoubtedly having some knock on effect with the kids.
Have you had a good look on here?

http://www.autism.org.uk/services/local/england.as...

some great support is out there.
Good luck looking

oldbanger

Original Poster:

4,316 posts

237 months

Wednesday 16th December 2015
quotequote all
Thanks. I've also come across the Curly Hair Project which looks like a good resource.

A good day today. After a week of angry outbursts about not wanting to go, the older chilld has managed to perform with her class at the school Christmas concert. And very good she was too. smile I may have even got dust in my eye.

oldbanger

Original Poster:

4,316 posts

237 months

Thursday 17th December 2015
quotequote all
She had a bit of a blow out this morning but she was on such good form yesterday that I guess we have to pay for it somehow.

dhutch

14,198 posts

196 months

Saturday 19th December 2015
quotequote all
My first post (above) was a bit of a brain dump, but one thing I didn't say was top job for taking these two kids on.

I must have been a right handful for my patents at times, and was very lucky to end up at the secondary school I did with hinds sight, even though at the time it was far from totally enjoyable it.

I must seem like a world away, but by the time I was coming out of my teenage years and.certainly looking back down, very grateful to be where I am now.

The schooling inntue country works ok for most people, but its hellishly rigid and really not great for many, with these with Aspergers sitting right on the cusp of if it works at all for them. That's what I see anyway.

Daniel

oldbanger

Original Poster:

4,316 posts

237 months

Sunday 20th December 2015
quotequote all
dhutch said:
My first post (above) was a bit of a brain dump, but one thing I didn't say was top job for taking these two kids on.
Thanks Daniel. That means a great deal.




Dodsy

7,172 posts

226 months

Wednesday 23rd December 2015
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I have 2 boys, one is ASD the other is Aspergers. Consistency and routine are very important as you have discovered even little changes have a big impact.

Its impossible to fit all the good advice into a post on PH - I often spend hours with other parents helping them understand the process as I've become a bit of an expert over the years. A few key points below:

CAMHS are frustrating and will not help apart from providing drugs but you MUST engage with them for a diagnosis and to help along the EHCP process

You can request an EHCP, you dont have to wait for the school to spend years grinding their gears (google your local council EHCP team), but you will at least need an Education Psychologist report to get this rolling.

Schools have low or no awareness of ASD and Aspergers or how to deal with it - dont wait for them , take action yourself the sooner the better

If there is a timeline for something (say 4 weeks for a response) they will take exactly 4 weeks. Public servants cannot be rushed

You can and should demand (and I use that word rather than 'request') an Education Psychologist evaluation - and make sure you have talked to the Ed Psyc before they see your child just to check what they are going to do. I have seen cases where the school have heavily influenced the Ed Psyc to cover up for their own failures resulting in a report thats useless.

Never ever take no for an answer. At every turn you will be told they cant do it or dont need to do it (assessments etc). Be persistent. Be firm. Push.

Be very very careful if you do get an EHCP that you choose the right school. Most schools that claim to specialise in ASD/Aspergers are clueless and are just grabbing the extra funding then using it for the mainstream school, the ASD kids get nothing.

Most important point - you are the ONLY one who is acting in your childs best interests. Everyone else is just doing a job and generally ticking boxes to show they have followed a process , they really dont care. Keep this in mind in all dealings with Authority.


Having said all that having an ASD/Aspergers child is an amazing experience, I spend hours talking with mine and they come up with some incredible ideas and see the world in a different way to us 'normals' - Mine both attend a specialist private school, funded from their EHCP and the difference in them is night and day. Its very important they are educated in the right way by people who care.

ETA: forgot to say, the single most important thing I learned is how to give clear instructions. For example most kids you just tell them to get ready for school. My boys you have to give them 1 instruction at a time. Clean your teeth. Once done, go and put your socks and pants on. Now put your shirt on. Now trousers etc.... ASD kids tend to hear a list of instructions but only take in the first one and they do literally what they are told. Two examples:

1. In school teachers gives kids a list of 3 tasks. My son sits for half the lessons twiddling his thumbs wondering why everyone is taking so long. He has of course completed the first task then believes he has finished. No end of aggravation from teachers about this, they will not change their teaching style to suit an ASD child.

2. I told my son to get just keep his head down and get on with whatever he is told to do. I get a call from the school to tell me he has put his head on the desk and wont move.....




Edited by Dodsy on Wednesday 23 December 10:09