Aspergers?

Author
Discussion

Dodsy

7,172 posts

226 months

Wednesday 23rd December 2015
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Also give this a read - its written by a severely autistic child so a lot of it wont apply or make sense but when I read it I had a whole lot of lightbulb moments.

http://www.amazon.co.uk/Reason-Jump-voice-silence-...

budgie smuggler

5,359 posts

158 months

Wednesday 23rd December 2015
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Dodsy said:
...


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

...


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.

...
That's really sad to read. frown As the husband of a wife who is a primary school teacher and ex-SENCO I can say hand on heart that it is absolutely not true in all cases. In fact knowing her colleagues and acquaintances, a more caring bunch of people you could not wish to meet.

The stories I've heard of people spending their own money on resources, regularly going in to work on their days off for various reasons, going massively out of their way to get the right help for kids with ASD/selective mutism/you name it are awe inspiring and really couldn't be farther from 'box ticking' TBH.

Dodsy

7,172 posts

226 months

Wednesday 23rd December 2015
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budgie smuggler said:
That's really sad to read. frown As the husband of a wife who is a primary school teacher and ex-SENCO I can say hand on heart that it is absolutely not true in all cases. In fact knowing her colleagues and acquaintances, a more caring bunch of people you could not wish to meet.

The stories I've heard of people spending their own money on resources, regularly going in to work on their days off for various reasons, going massively out of their way to get the right help for kids with ASD/selective mutism/you name it are awe inspiring and really couldn't be farther from 'box ticking' TBH.
I am sure there are some caring people out there, but they are the minority - Its best to assume the worst and expect to have to fight every step of the way. My boys are 18 and 16, I've been dealing with their conditions for a long time and I've met a total of 2 people who I could say genuinely cared (this is excluding the special school they are at where everyone is amazing).

SENCO at the last school used to lock my oldest in a room on his own all day so he wouldnt bother the other kids - and this room had a window onto the playground so other kids used to video him in his 'prison cell' and post the vids up on youtube.... I have many may other examples unfortunately.

dhutch

14,198 posts

196 months

Wednesday 23rd December 2015
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Dodsy said:
II 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.....
Priceless. I can see me doing similar things as a young child!

Daniel

mad4amanda

2,410 posts

163 months

Wednesday 23rd December 2015
quotequote all
budgie smuggler said:
Dodsy said:
...


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

...


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.

...
That's really sad to read. frown As the husband of a wife who is a primary school teacher and ex-SENCO I can say hand on heart that it is absolutely not true in all cases. In fact knowing her colleagues and acquaintances, a more caring bunch of people you could not wish to meet.

The stories I've heard of people spending their own money on resources, regularly going in to work on their days off for various reasons, going massively out of their way to get the right help for kids with ASD/selective mutism/you name it are awe inspiring and really couldn't be farther from 'box ticking' TBH.
Agreed depends on who you seek out , my wife is still in touch with families she helped 15 years ago and still helping them zero pay and not even in the same part of the country.
Hence her contributing early on to this thread because I told her about it.

oldbanger

Original Poster:

4,316 posts

237 months

Saturday 16th January 2016
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Just by way of an update, I did a referral for my niece to be assessed to a local autism centre as advised by the GP but have had a letter back saying they don't accept referrals unless they come from schools or professionals. I will speak to the school but suspect that I am not going to get anywhere.

Mad4amanda I hadn't spotted your offer of taking it to PM. Am I OK to drop you a line?

TSCfree

1,681 posts

230 months

Saturday 16th January 2016
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I read the title of the thread and smiled as it brought back memories of a work colleague. A new aircraft technician straight out of training, so obviously a bit wet being the ears, but extremely intelligent. He was sent out to service the aircraft, and after quite some time, we sent out a search party to find out where he'd got to. We found him staring down at the wing intently on his hands and knees scouring the area. Curious to know what he had found and why he was taking so long we asked him what the problem was. It turns out he was checking each and every rivet head for security! All 4000 of them! Now when the instruction tells you 'to check surfaces', most people would stand back and look for irregularities, unless it called for a detailed inspection and anything obvious would present itself.

The one thing I learned working with him, is that there were absolutely no shades of grey and interpretation was something that was quite difficult. We had some great discussions as he didn't have a television, was an avid reader and liked the Torygraph. If a topic has been covered in the paper, that was the stance he'd also take without any clue of the agenda or intentions of the writer/paper as if it was the Gospel truth.

mad4amanda

2,410 posts

163 months

Saturday 16th January 2016
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oldbanger said:
Just by way of an update, I did a referral for my niece to be assessed to a local autism centre as advised by the GP but have had a letter back saying they don't accept referrals unless they come from schools or professionals. I will speak to the school but suspect that I am not going to get anywhere.

Mad4amanda I hadn't spotted your offer of taking it to PM. Am I OK to drop you a line?
Please do, we thought it a bit strange but no worries pm me and I will pass it over to her for any help , she really "gets" Autism and Aspergers and still is off sick so has some time to help.

oldbanger

Original Poster:

4,316 posts

237 months

Saturday 16th January 2016
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Thanks, hopefully YHM

mad4amanda

2,410 posts

163 months

Sunday 17th January 2016
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Sorry nothing received yet?

oldbanger

Original Poster:

4,316 posts

237 months

Sunday 17th January 2016
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I have PMed again. Thanks.

AMLK

407 posts

184 months

Thursday 21st January 2016
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Looking for a bit of advice if possible. As a general rule things have been better since our daughter had been on melatonin, but we still have a couple of big issues.

The one that causes the most arguments and meltdowns is getting ready for school. School itself is not a problem, she loves it and now has a couple of really good friends. The issue is getting out of bed, getting dressed, hair brushed and cleaning teeth. She is so stubborn and will not do anything we ask of her in the mornings. She doesn't care if she is late for school. I am frequently in tears after she has left as it is such a hassle, and she has even hit me if I try and help with her coat or shoes. I am at the end of my tether and really don't know what to do.

The other issue is getting her to do her homework. She finds it boring and unnecessary. She was in trouble on Monday at school as she had not completed it all. Trying to get get to do always seems to end in an argument.

If anyone has any advice I would be extremely grateful.

mad4amanda

2,410 posts

163 months

Thursday 21st January 2016
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oldbanger said:
I have PMed again. Thanks.
still nothing come through I have tried to email you too?
Try email direct


Edited by mad4amanda on Friday 22 January 08:40

Dodsy

7,172 posts

226 months

Thursday 21st January 2016
quotequote all
AMLK said:
Looking for a bit of advice if possible. As a general rule things have been better since our daughter had been on melatonin, but we still have a couple of big issues.

The one that causes the most arguments and meltdowns is getting ready for school. School itself is not a problem, she loves it and now has a couple of really good friends. The issue is getting out of bed, getting dressed, hair brushed and cleaning teeth. She is so stubborn and will not do anything we ask of her in the mornings. She doesn't care if she is late for school. I am frequently in tears after she has left as it is such a hassle, and she has even hit me if I try and help with her coat or shoes. I am at the end of my tether and really don't know what to do.

The other issue is getting her to do her homework. She finds it boring and unnecessary. She was in trouble on Monday at school as she had not completed it all. Trying to get get to do always seems to end in an argument.

If anyone has any advice I would be extremely grateful.
To be able to get hold of melatonin means you must be engaged with CAMHS as GPs arent allowed to prescribe it. In that case you should be able to access other services, I would suggest trying your local council Autism Outreach team. They should be able to help with strategies for those morning problems.

Be careful with the melatonin, some people swear by it but it can have side effects (google is your friend) its meant to be relatively benign but it was explained to me that its only a short term solution to snap them back into a sleep pattern so maybe a few weeks as the brain quickly gets used to it and therefore produces less of its own. So then you have to up the dose. And then when you stop it all hell breaks loose. So try to keep it to the lowest possible does for the shortest possible time. As it was explained to me, once you become dependent on it its very difficult to stop and I didnt want my son to be taking it forever.

My boys both attend a school that only deals with Autistic kids - so no homework and mainly 1-1 tuition or very small groups so we no longer have to deal with the homework issue. Might be worth talking to the school and explaining the special circumstances but to be honest if your daughter is autistic it will just get worse, the only solution IME is a move to a school that understand it and work with the child rather than ignoring the condition and trying to force them into the 'normal' mould - that never ends well.

My youngest also loves school but its almost impossible to get him out to the taxi in the morning and even when we do he'll most likely just refuse to get out at the other end and has to be brought back home. So at the moment he only goes in when I am working from home as I can get him dressed , take him to school and ensure he is removed from the car and taken in ... once he's there he loves it but its a heck of a challenge some days.

Of course this is a problem as some weeks I work from home 3-4 days other weeks not at all so his attendance is sporadic but its better than nothing. He has an EHCP and attends a special school so flexibility is built in , you wont be able to do this at a mainstream school where they require attendance every day without fail.





oldbanger

Original Poster:

4,316 posts

237 months

Thursday 21st January 2016
quotequote all
mad4amanda said:
still nothing come through I have tried to email you too?
Try email direct on
Thanks - hopefully that will get through!

oldbanger

Original Poster:

4,316 posts

237 months

Thursday 21st January 2016
quotequote all
From September my older girl wouldn't get up for school and would kick/punch if you tried getting her up. She would say she was ill every day because when she lived with grandma she would allow her a day off school. She actually achieved 100% attendance for the first time ever last term (I checked with grandma) but it was sheer determination and very wearing.

She is really obsessed with not having curly hair (it's very curly as it's only a couple of inches long - it used to be right down her back before she started pulling). We recently managed to convince her to allow a hairdresser she is fairly familiar with to style it - and got a really nice lulu style bob that needs straightening every day.

I have to leave the house by 7:30 sharp and thee weeks on she's now up by at least 7:20 to let me touch it up and get the overnight kinks out. The downside is I have had to learn how to blow dry and straighten (in middle age), and end up doing my own hair on the way to the car (it gets put into the same bun every day so it's <1 minute's work)

oldbanger

Original Poster:

4,316 posts

237 months

Thursday 21st January 2016
quotequote all
AMLK said:
Looking for a bit of advice if possible. As a general rule things have been better since our daughter had been on melatonin, but we still have a couple of big issues.

The one that causes the most arguments and meltdowns is getting ready for school. School itself is not a problem, she loves it and now has a couple of really good friends. The issue is getting out of bed, getting dressed, hair brushed and cleaning teeth. She is so stubborn and will not do anything we ask of her in the mornings. She doesn't care if she is late for school. I am frequently in tears after she has left as it is such a hassle, and she has even hit me if I try and help with her coat or shoes. I am at the end of my tether and really don't know what to do.

The other issue is getting her to do her homework. She finds it boring and unnecessary. She was in trouble on Monday at school as she had not completed it all. Trying to get get to do always seems to end in an argument.

If anyone has any advice I would be extremely grateful.
I have had a couple of thoughts.. I have put a spare daylight desk lamp (SAD lamp) into my older girl's bedroom and usually stick that on around 7 am. You can get ones incorprated into alarm clocks that come on gradually. I am not sure it has helped completely, but it does play some part I think, though the hair styling has clinched it. I personally swear by my dawn simulator alarm though so I am a bit biased.

I also read recently on an aspergers blog (http://www.myaspergerschild.com/) that calling it "study" may help. Creating a study area and study time, where they can do their homework or do other study. I am very lucky though in that my older girl is obsessed with avoiding "debits" so will always try to get it done but she also goes to homework club before school and during lunch so does a lot of it before she gets home. That might help as well - if the school offers homework clubs or quiet areas like this.

Something else I am going to try, particularly with my younger one, is writing social stories to explain some of the behaviours they don't grasp. I actually used to do this with her when she was little without realising what it was. There's an article here http://www.myaspergerschild.com/2009/11/teaching-c... which makes me smile every time I read it, as we're still grappling with the "3 tasks to do after the loo" with my nearly 9 year old and one of the examples covers just that.


Edited by oldbanger on Thursday 21st January 23:17

AMLK

407 posts

184 months

Friday 22nd January 2016
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Thanks for your replies.
Unfortunately I don't have access to CAHMs at the moment, we have only seen a specialist paediatrician who prescribed melatonin and we are referred for official assessment, but have not had any appointments yet.

Annoyingly we have an award winning school specialising in autism in the village but it is for boys only. The high school we have applied for her to go to (won't hear til April if she has got in) has a well equipped specialist section, where kids with any special needs have full access to at all times. They have a dedicated area for homework plus a sensory and chill out room. She has met with the guidance counsellor and we feel that they would really be able to help her. Our only issue would be ensuring she doesn't miss the bus!!

She wakes up fine, but refuses to get ready because she is too involved with something else, be it listening to music, reading, watching a video etc. Much as we try and limit this she thrives on sensory stuff, she cannot even sleep without music on (usually two forms of music too!) This morning she was fine for the first time this week, mainly because Fridays are movie nights with friends and she didn't want to jeopardise this.

As for homework, she used to go to a homework club at school, but said it was boring and refused to go (it was after school so she would just walk straight home). I might try and encourage her to go again if the school is still doing it as she gets on really well with the teacher that runs it.

The other issue we have is that she doesn't really like her teacher, so I feel that not doing her homework is her way of being defiant to the teacher. In fairness to her I don't feel her current teacher does understand her or her quirks very well. Also the teacher's son is in her class and he has been known to bully her (the head teacher sorted this out last term and it seems to be okay at the moment) so I think this partly contributes to her dislike of the teacher. Also in my daughter's defence (not that I would let her know this is what I think!) she is very intelligent so her homework is very easy - when she actually does it she normally completes it in 10-15mins, another reason why it is sooo frustrating that it causes so much angst! I think it is time for me to have another meeting with the head to talk things through.

Thanks again for the replies, it is good to know I am not alone in this.

Dodsy

7,172 posts

226 months

Friday 22nd January 2016
quotequote all
AMLK said:
Thanks for your replies.

Annoyingly we have an award winning school specialising in autism in the village but it is for boys only.
Boys are 5 times more likely to be autistic than girls so most of the schools are boys only - My sons attend one of the best schools in the country and its all boys. Mixing autistic boys and girls brings a whole new complexity to the issue so its no surprise that they are single gender schools.

If you are looking for a place at a special school (or one with a special unit) the only way you'll be able to access the unit is if your daughter has an EHCP (what used to be called a statement). This identifies the needs of the child and also secures funding. Without both the need and money being agreed and documented even if she wins a place at the school its unlikely they will provide any special support without the EHCP - You can start the EHCP process yourself, just contact your local EHCP team and get the ball rolling. It can take up to 2 years to go from kick off to EHCP being issued so if thats the right route for your daughter you need to get the ball rolling now.

If travelling to school on the Bus is an issue they will also pay for a dedicated taxi.



AMLK

407 posts

184 months

Friday 22nd January 2016
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I understand why the school is all boys, I have 2 nephews with ASD, it just is frustrating it is on our doorstep yet not suitable!

I am not sure we have the EHCP in Scotland. She has been referred on the ASCA pathway, from whom I am awaiting a call back after chasing them this morning to find out why we haven't heard anything since her referral 3 months ago.

I am going to school in a few minutes to arrange a meeting with the head and try and get more info. Thanks for your help.