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      Depression, Mental Health and Crisis Support   06/04/2017

      Depression, Mental Health and Crisis Support   Depression and other mental health difficulties are common amongst people on the autistic spectrum and their carers.   People who are affected by general mental health difficulties are encouraged to receive and share information, support and advice with other forum members, though it is important to point out that this exchange of information is generally based on personal experience and opinions, and is not a substitute for professional medical help.   There is a list of sources of mental health support here: <a href="http://www.asd-forum.org.uk/forum/index.php?showtopic=18801" target="_blank">Mental Health Resources link</a>   People may experience a more serious crisis with their mental health and need urgent medical assistance and advice. However well intentioned, this is not an area of support that the forum can or should be attempting to offer and we would urge members who are feeling at risk of self-harm or suicide to contact either their own GP/health centre, or if out of hours contact NHS Direct on 0845 4647 or to call emergency services 999.   We want to reassure members that they have our full support in offering and seeking advice and information on general mental health issues. Members asking for information in order to help a person in their care are seeking to empower both themselves and those they represent, and we would naturally welcome any such dialogue on the forum.   However, any posts which are deemed to contain inference of personal intent to self-harm and/or suicide will be removed from the forum and that person will be contacted via the pm system with advice on where to seek appropriate help.   In addition to the post being removed, if a forum member is deemed to indicate an immediate risk to themselves, and are unable to be contacted via the pm system, the moderating team will take steps to ensure that person's safety. This may involve breaking previous confidentiality agreements and/or contacting the emergency services on that person's behalf.   Sometimes posts referring to self-harm do not indicate an immediate risk, but they may contain material which others find inappropriate or distressing. This type of post will also be removed from the public forum at the moderator's/administrator's discretion, considering the forum user base as a whole.   If any member receives a PM indicating an immediate risk and is not in a position (or does not want) to intervene, they should forward the PM to the moderating team, who will deal with the disclosure in accordance with the above guidelines.   We trust all members will appreciate the reasoning behind these guidelines, and our intention to urge any member struggling with suicidal feelings to seek and receive approproiate support from trained and experienced professional resources.   The forum guidelines have been updated to reflect the above.   Regards,   The mod/admin team
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loubeeloulou

Struggling

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Hi

 

I haven't really used this forum much, mainly due to being so bogged down by 'life' an it's associated issues, but I'm unsure where to turn next really....

 

My 14yo has asperger's, fiercely intelligent, big and mature for his age, is having the blackest time.

 

he hasn't attended school since - have to think about this as time is lost on me right now - April 2010, he's had home tuition since June this year, with a useless tutor with no experience of ASD (basically she told him he was rude if he didn't say bye, constantly asking if he understood the consequences of not partaking etc etc etc) We changed from fluoxetine, which he'd been on since Feb 11 to sept 11, to citalopram, in late sept early oct, after we hit a bumpy path somewhat and fluoxetine didn't seem to be doing much. His mood was that low that he was signed off home tuition til he settled.

 

He went on fluoxetine as he was clinically depressed and his anxiety was huge in feb this year, he told me he wanted to kill himself.

 

He has spent much of this year in the house, we go out less and less, we see people less and less, if my other children's friends come here he will often speak to them, but often sits in his room, playing his playstation.

 

His fave phrase is 'I'm bored' - typically. He was on 40mg of fluoxetine, but changed to 20mg of citalopram, which made him massively tired constantly, messed up his sleeping pattern upside down completely, and didn't even take the sharp edges off his down mood.

 

Things got so bad again that he began saying his life was rotten, worthless, there was no point to it. It was decided by the psychiatrist that he should stop citalopram, which we have been clear of for a wk now, to see how he goes meds free (he takes melatonin to aid sleep only) and we have an appointment mid january with him.

 

I have been asked by clinical psychologist, who is lovely, if i need anything, if there is anything they can do more to help, but they can't. I don't know quite what to do anymore. It's affecting my sleep, my mind, everything. All i do is worry, he sends me texts saying he hates his life, he wants the end bit of it, the rest is worthless.... I know, well, I hope I know, that if he meant any of it, he wouldn't be telling me, that he wants this, as he doesn't communicate feelings/emotions usually.

 

It is literally breaking my heart, Im clear moments I 'hope' that this is just a teenage phase of asperger's and that things will indeed become better, as he gets more used to things (he's only been diagnosed since he was 12) but every day is a struggle really,

 

He won't go anywhere at all, so when the bored phrase comes out we sit and talk, well, I do, usually offering ideas, but lately he gets more frustrated with my suggestions that he can't do, so loses his temper quite a bit, even at me, who is the only person who he knows is closes to and is there for everything, but I know he can't help it, then he gets upset too... so people like my mum, who say, tell him he has to snap out of it, take him different places, just don't seem to grasp it, places are full of people, people aren't great!

 

I know folks on here have been through, and are going through similar things, but, does anyone have a magic solution? answers to silly questions; such as how long will this go on for? will it get better??!!!

 

:)

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He also doesn't bathe, cajoled into it usually every 3-4 wks, and he will keep the same clothes on during that time, I gently try to say please wash, deodorant etc, but he doesn't get the point, often he sleeps on the sofa when he can't get to sleep. He has some irritations with food, some things can't be mixed, some things he won't have at all, he has no other problems.

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Kathryn   

Oh loubeeloulou, sounds like life is really tough at the moment, especially getting the texts must be worrying. Yes I can definitely identify with some of what you say, especially about the mess and the constant switching to find the right one. For my daughter, who was 15/16 when similar things happened, it did get better but it took a long time and unfortunately there was no magic solution, she was severely depressed

and anxious and we had to ride it out. If you have a good professional, hang on to them and try to hang on to a normal life yourself so you have the energy to deal with your son's problems.

 

We're here if you need a listening ear,

 

K x

Edited by Kathryn

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bid   

Just to let you know we went through this too, when my eldest son was rising 15. He was out of school for 6 months.

 

The solution for us was a residential placement at an independent special school for AS/HFA...but my son was very keen to go there so that helped as he was able to write that this was what he wanted to all the professionals involved, and he came with me to visit, etc.

 

We had similar trials with meds, until I took ful responsibilty for slowly taking him off everything, as none of them seemed to help. But obviously, this wouldn't be right for everyone.

 

Have you considered a special school or special 6th form college? There are now even more independent ones that cater for young people with AS/HFA who don't have learning difficulties, so maybe want to access GCSEs, etc. A good place to start is to google Gabbitas, as they list all the special schools in the country. You could also google the Priory Group and the Hesley Group too.

 

I can only echo Kathryn's post too, as it's very important to keep well yourself and keep some semblance of 'normal' life going for the rest of the family.

 

Hang in there, and we are always here for support.

 

Bid >:D<<'>

Edited by bid

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JeanneA   

I to understand what you are going through having been through this with my son Glen who is nearly 18. In the end I couldn't cope with him at home any longer due to his very aggressive manner and had to have him placed in a residential home where he has been since May 2011. He is still aggressive at times, has good and bad days but with so many staff, 24 hour care he is in the right place. Glen is is medication: mirtazapine and lorazapam but not sure if they really work to be honest? I would consider a specialist placement for your son, have a chat with social services and get some advice. You have to try and do the best for him and for yourself.

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Thanks everyone, it's good to know I'm not living a solitary nightmare!

He won't entertain any kind of schooling, even home tuition is a no go right now.

His aggression and upset on citalopram was horrific, hence why he has come off it,

I'm not sure how he will manage wiThout, but they don't seem to help either!

He gets very upset, doesn't communicate how he feels, used to send me Facebook messages,

Then I bought him a phone for Christmas so he has a direct cOntact with me when he needs to.

Nobody else really seems to understand, sometimes I do lose my patience & walk away but not often.

I think he is lost in his own world, deeper and deeper into the unknown, which scares me.

I don't have a life. I exist in his solitude at the minute. We seem to have isolated together!

I have had to reduce my hours to two days at work just to be home, I don't go anywhere at minute either.

My anxiety levels are huge, never understood anxiety before now if I'm honest, now I get it!

We don't attend family gatherings nor visit people, cos he won't go, so I won't leave him do we stay here!

If I could just get him stable, forget education, he can access that at any age by his own choice, it's never too late is it!

Maybe I just don't process it effectively, but I just want him stable so don't force anything at all mostly.

 

I feel so sorry for him, he knows he can't do 'normal' stuff and it does upset him, I don't want normal, whatever that may be,

But some semblance of standard would be nice at times. :)

 

I email the clin psychologist with updates, prob more to let off steam, think she knows and it's ok, but all they ever

Ask him is has he thought about hurting himself, whih he always denies, but says his life is worthless all time.

I'm praying that's just attention. Some days I've been that manic I've googled emergency mental health services,

Not having any clue what I would say, and frightened to death of what they might do to him,

He and I are the only ones who know everything, his dad doesn't really get it all and he won't say this all in front of him either.

 

Then I think, stop stressing, he will get stronger, fingers and toes crossed!!!

X

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oxgirl   

I do understand what you say about becoming isolated yourself, that slowly happened to me as well, it's almost as if you become aspie yourself! My lad is 18 now and his independence is very limited. He also has no confidence to do anything or go anywhere or talk to anyone and everywhere he goes I have to take him.

 

I did start work last year, 13 hours a week, and it was good for me to get back out there into the world a bit, but it was only then that I realized how rusty my people skills had become through being isolated with my lad for so long. He was at home for two years out of school and he is still very dependant upon me but at the same time is very unhappy about all that he knows he is missing out on and all the things that seem so unachieveable for him that he sees others of his age doing.

 

I'm very worried for the future, tbh. Like you, I don't know how I can help him move on from this stage he is at, he seems so 'stuck' and doesn't know how to find it in himself to break free from the prison he finds himself in. He would like to do things and make a life for himself but he hasn't a clue where to start and hasn't the confidence or the get-up-and-go to make it happen. Also, he has no friends who he can go out and about with. I feel so bad for him stuck with his mum taking him here and there but don't know what the solution is at the moment.

 

We just have to hope that they'll develop the confidence in themselves to start to make a lives for themselves, don't we.

 

~ Mel ~

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That's exactly how I feel, like I've become more intOlerant than I was before, like I've become irritable, anxious & easily annoyed!!!

It sounds just like what we are going through, he yearns to be the same, to have friends and do things but when I ask him what he wants to do he doesn't know.

 

It's so heartbreaking isn't it? He has virtual friends, of a sort, he plays online on his play station against people and he knew some of them from primary school. He spends all his time on it, most days. It costs me a fortune buying stuff for it but he has nothing else so how can I refuse?!

 

I guess we have to hope for more good days, more strength and patience & a break in the pattern somewhere, somehow. His old school knocked out the self esteem and beautiful happy smiling boy he was out of him, by forcing issues, treating him as naughty mentioning autism yet making no referrals then making it impossible for him to trust then, if things had been moved on faster I genuinely believe that he wouldn't be as low as he is now, or maybe I have to blame someone, I don't know, I've never formally complained as I'm not sure of my reasons for this all!

 

I do crave normality for myself yet I can't leave him and go have a life, he is my boy. Have to hope for hope!

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Most of the independent specialist schools have good websites, so he could have a look at them to see how different they are to mainstream schools. Some of them may be close enough for him to be a day pupil if he is not keen on residential (although they do benefit greatly from the 24 hour curriculum).

 

Also look at the Cambian schools/16+ and Ruskin Mill colleges.

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I will have a look at them for sure. The education woman who compiled his statement hasn't been in touch since she write it and I net her to discuss what best, which kind of surprises me but she was very pro-active, offered lots of virtual learning schemes that were not cheap at all yet that was her first offering so u think she would be in side for enquiring. Although right now I just want him stable and see how he fares with medication free status then slowly discuss education as we have made it a non subject at minute with him. But it may indeed give him hope that somewhere can offer something supportive and stress free and a Place to make friends and be 'normal' so I will definitely have a look.

 

Thanks :)

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My son was only able to come off his medication once he had settled into his specialist school. We found he did not need it then.

 

Although the HE schemes may not be cheap, they will be no where near as expensive as specialist education (which can be anywhere between £10K to £100k per year), so do not expect the LA to be pushing for such placements. They also know that if they can drag things out for a year or so, then it will be difficult to get any school to take him as he will only have a year left. If you coudl get him into a specialist school, then you would have a good chance of getting him to stay there til he is 18 or 19.

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Spoke with statement writer yesterday and she tells me that she has found an online learning not school.net that she thinks it right for him.... Can't find more than a sales website for it either which is annoying. But school is the absolute last thing he needs right now anyway . He is really fed up saying he never gets any better, nothing ever will get better and nothing matters anyway etc etc so he fell asleep upset last night at 830pm and the stupid wind woke him at 130am so now we are stuck in reverse sleep pattern again which upsets him even more being awake all night!!!! Just don't see how anything is gonna change. It's so frustrating :(

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Sally44   

I just wanted to say that that was where we were at with my son.

 

I ended up writing a list of things my son was not dealing with, went to see my GP, gave her the list and just cried and cried whilst she read it.

 

Are you also seeing a psychiatrist from CAHMS?

 

You do tend to get passed from pillar to post. For example, my son is now gradually returning to school [now on 4 half days a week]. But his anxiety is at the same level every day. I suppose that is logical because it isn't anxiety related to something that then reduces when his experience is okay. It is all day long and pervades everything.

 

Anxiety is apparently the first and strongest emotion with those on the spectrum.

 

I did have sessions with Clinical Psychology. But TBH they admitted these sessions were for "me" to just talk about my son, what was happening, how we were/weren't coping etc. They never did any actual work with him, but did give me some ideas which I tried.

 

But as the anxiety has reduced, but is now at a plateau which is still very high, I went back to CAHMS and said I wanted to discuss medication.

 

The CAHMS psychiatrist said that she did not want to use medication straight away and she felt that Clinical Psychology MUST do some sessions with me/son together [and even hopefully in the school placement]. So CAHMS have referred me back to Clinical Psychology.

 

I get very frustrated at the timescales, and the fact that no-one is proactive, and that I am really walking a tightrope of returning him to school and I don't want it to fail. Because if it fails once, it is much harder to get him to even try the next time.

 

If Clinical Psychology can just have sessions with you for a while?? And even consider whether you need some medication to help you. I know I came very close to taking my son to the Clinical Psychology Department at the local hospital and leaving him there with a note saying "phone me when you've fixed it". Because it is relentless.

 

Do what you can around the house so that you know it is a safe place ie. hide things he could use to hurt himself. Lock doors and windows at night so he can't get out.

 

Remember that alot of the things he says are truely how he feels at that time, and he is venting his frustration. But very few children do finally act on what they say. So the fact he is saying it is better than him not saying it and planning something.

 

Try to do things he does like. And make a scrap book of pictures, drawings, writing of those times. Try to keep him occupied.

 

I would suggest that you do go and look at independent specialist schools, without your son at first. See if there is anything out that that gives you some hope or something to work towards.

 

But for now, just concentrate on reducing anxiety and stress and keeping calm. Try to include some exercise as that reduces stress. Don't even think about schooling at the moment. There's no point going through the daily torture if it is just not feasible at the moment. Do things you can both enjoy, or at least cope with.

 

Push Clinical Psychology or CAHMS to do some family sessions with you and your son eg. relaxation, visualisation, anything they suggest really.

 

Some things suggested to me did not work 6 months ago. But I can use them now he is in a better state.

 

And the independent OT we saw said that there was no chance of my son accessing education until he was in a calm and alert state, which he wasn't back then. The Sensory Integration Programme he is having has been hugely beneficial to him.

 

If there is anyone that can housesit, or someone he can go and stay with for the day [grandparents etc], then get them to help. We all need a break and it is a very draining experience having your child like this 24/7.

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Sally44   

Definately look at independent schools.

Any Educational Tribunal you have is going to be at least 6 months away.

Your son might feel differently in a similar peer group.

My own son is happier in his current small class of 7 other kids who are all very similar to him.

Your son is probably comparing himself to other kids his age and what they can do, and feels he will never achieve that. In a different peer group he might be at the top, or in the middle, instead of always feeling at the bottom and rubbish at everything.

 

Your child is entitled to a suitable education. Nothing that has been offered so far has been suitable. On-line learning maybe something you want to consider, but what about social communication, relationships, life skills, therapies etc which would all be available at an independent placement. It isn't easy to get it, but it is often children who are like ours, that end up in such a very bad situation, that do win those placements.

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He actually text me before saying he can't stand every day, and could he go back on his tablets as he feels worse without them!!!

I agree, u think te fact he tells me this stuff, albeit in writing, he is venting, not acting on it, which does make me feel more secure but the day to say is horrific. U too have thought about ringing 'someone' and saying, help me. But I'm jur as scared that they'd stuck their noses in and make a bigger mess! Can't win can you?!

Out camhs sessions do tend to be him shrugging shoulders and me talking, they don't do anything really. But they're nice. I guess no one can actually 'do' anything though, i don't have the answers either, so it's all pants.

I'm not even worried about education right now, it's irrelevant, I'm worried about him and how we are ever gonna lift this cloud.

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He goes down to his dads often but won't stay long he goes To gym sometimes but won't do much especially if people are there. His confidence is shot to pieces. My parents don't understand his other grand parents are useless. It's me and him. That's it.

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Sally44   

Clinical Psychology and CAHMS can do something. They can do sessions with him, or with you both. Often you have to demand that they do something. Which is really horrible, because when you need their input you are so exhausted, worried and at the end of your tether that the last thing you feel like doing is asking them to actually do something.

 

Next time you have a meeting say that you need (1) to be able to meet and talk with someone because you have no-one to support you. And (2) that you want to know what 1:1 or group work they can do with your son and you.

 

Ask them to put in writing what his needs are [as they should be included in his Statement], and how those needs should be provided for.

 

If you don't get any verbal response, follow it up with a letter. And don't be surprised if you are passed between CP and CAHMS a couple of times [as is happening with us at the moment], because nobody wants to take on this hot potatoe!

 

Ask CP or CAHMS to refer you to Aiming High [i think this scheme is available across the UK]. You have to be referred by a professional such as CP or CAHMS, or the EP or OT etc.

 

Basically Aiming High is part of "short breaks", which is something the Government have signed up to and have to fulfill.

 

My son has been allocated 60 hours this year, and he uses that time by going to the cinema, bowling, swimming with a support worker from Aiming High. His support worker is a young man, who is an experienced carer, and has been very good with my son and has listened to everything i've told him he should/shouldn't do.

 

If your son had someone with him, he too might be able to go to the gym, or the cinema [can be off peak times if he prefers it to be quieter]. His support worker is very flexible. Some weeks my son feels too anxious to go out. Then the following week he may go to the cinema and McDonalds.

 

Again, Aiming High is something that parents are often not even aware of. So ask them about "Aiming High", and ask for your son to be assessed and to have a support worker so that he can get out of the house sometimes to do things he enjoys.

 

These things have taken me years to get set up. So try to start the process, because it will happen in the end.

 

Thankfully we already had aiming high in place before he refused school. I imagine that everything has just snowballed with you and now you just feel totally isolated.

Edited by Sally44

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Sally44   

[i remember from another recent post by Mandapanda that she said that CAHMS had refused to come out to the house to see her son, who was too anxious to even get to a CAHMS appointment.

 

The Psychiatrist came to our house and took my son out for a walk to see how he was.

 

I know that CAHMS workers can go into schools.

 

So please don't just accept what you are told when they say they can't do things. They can. You just need to apply a bit of pressure.

 

Your local hospital should have a PALS service. This is for help/information to the public. You can always check things with them if you are unsure about what you have been told.

 

The most important thing at this time is to get things in writing. Because IF/WHEN you do find a school you want to go for, you need all this as evidence of how bad your son is.

 

I had to apply quite alot of pressure to Clinical Psychology. Thankfully, just before our Tribunal, they sent me a letter confirming that my son had an Anxiety Disorder. They had been reluctant to put anything in writing. So I wrote to them stating their obligations under the Education Act, and the Statementing process, and how EVERY need should be identified etc. And they sent me the letter.

 

I think that letter was a major point in us winning our school placement at Tribunal because it proved that he had deteriorated to such an extent that returning to his former mainstream school was not an option.

 

As awful as the current situation is, try to use it to get what your son needs.

 

Try to keep a diary of events and how your son is on a day to day basis, along with the things he struggles with and the things he says and threatens to do. I used to do a daily diary for a fortnight every couple of months, to give an overall picture of progress/deterioration.

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Kathryn   

LIke your son, my daughter could not cope with the idea of education for quite a long time while she was at home - even the sight of school books would bring on stress. It took over a year before she was ready to dip a tentative toe back into the water.

 

We tried to pursue a specialist school place but found this repeatedly blocked and we had to give up eventually because my daughter would have been to old for the school by the time the LA stopped messing us around. However she went to the local further education college and spent a long time being supported in the department for students with learning disabilities. At first she could only cope with basic courses well below her level of ability, but she was well looked after most of the time and it enabled her to gradually get her confidence back in a sheltered environment, and also to get ino the routine of going out the house. It wasn't perfect as the college was not geared specifically to supporting academically able students with AS, but it was all she had, and she has just gone from there to university, so it wasn't all bad.

 

So if an alternative school doesn't work out, or it's unlikely he would be able to cope with a school while he's still of school age, don't worry too much as the further education sector may have something suitable when he's ready to return.

 

K x

Edited by Kathryn

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It is fab to hear she went to uni. :)

I've spoken to clinical psychologist this morning and she is suggesting getting social services involved, the bit that deals with disabilities, suggested outreach, she is going to arrange a meeting, it's more that I'm on my own with it all, am not worrying about education right now, in my head, he will, one day access something, even just once a week. But having him stable and a bit happier would be nice for now. See how long it takes to set up an mdt meeting ... Doubt it will be this side of march. She wants us to discuss options about helping him and also what his statement is going to end up delivering, I.e online learning, but most importantly about getting him, and me, some other options

 

Shall see I guess :)

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Sally44   

Remember that the Statement has to be a true reflection of need - identifying each and every need and the provision must be specified and quantified as to HOW each need will be met.

 

It should not be a reflection of "what is available".

 

At our tribunal I included an email from the SALT. I had asked her to detail how much time she spent on 1:1 therapy with my son as well as how much time she needed for admin/planning etc. She replied that she spent "significantly more time that is detailed in his Statement". Yet at the Annual Review she had recommended a reduction in the total number of hours detailed in the Statement.

 

At the Tribunal we argued that the Statement must be a true reflection of need, and therefore he needed "additional" hours ontop of those detailed in the Statement - not a reduction. The Tribunal agreed with us and detailed the amount of time my independent SALT recommended.

 

So, when you do get to the Statement, make sure you have someone/some organisation look over it. And make sure you ask each individual/professional involved, in writing, to identify each need and quantify and specify provision on how that need will be met as per the Education Act and Statementing process.

 

Our Social Services have not become involved [part from agreeing the Aiming High support], because they say they ONLY work with children with learning disabilities. So you may come across the same?? But that is illegal. I just have not got round to challenging it yet.

 

You should have two SS assessments. One for you as a carer and one for your son. You should be able to access Direct Payments to buy in any support/provision he needs, or SS maybe able to provide whatever he needs.

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jlogan1   

i have to reply with regards to above comment that social services say they only work with children with learning disabilities,my experience is that we have ss involved because they say because i have 3 children with'problems' ,my eldest dd is comimg up 16 and was diagnosed just over a year ago ,has not been to school for over 3 1/2 years ,ds of 14(sounds very much like the above but without any violence) who has not been to school for over 11/2 years and dd of 11 who is showing the very signs that eldest dd showed at same age,neither of the youngest 2 have any diagnoses as yet but are both being assessed,going back to ss,we were asigned a socail worker about april last year and i must admit all has not gone well and would prefer it if they were not involved,all i seem to get is hassle of ds 'must go to school' and must do this that and the other ,they totally miss the point that he is not in school because he doesnt want to go but because he cant deal with it!( saying that he going going to try going into the schools 'base unit ') special needs dept tommorow for an hour! this is a very big step for us ,as he has often been unable to see tutor and unfortunatly none of the kids like sociall worker and will not see her,the elest says she doesnt listen to her so thinking very rigidly says if sw cant be bothered to listen there is no point in seeing her!ds just cant deal with seeing people,he sees a nurse at camhs( we were told they didnt have any one else)but he is comfortable with her and thats the main thing,but i would just be wary of letting ss involved,they have given me much more stress that i had before and am on the verge of telling them dont want there help.they seem to be very archaic in that with regards to my ds who at 14 is nearly 6 ft at a previous meeting i was told'we deal with autistic children every day,they must do as they are told and if it means making them( phyisicaly)go to school then that is what should happen' so we have had disagreements as they seem to look upon children should be seen and not hear! none of my children have learning problems so therefore at 14 i feel he should be able to say what he thinks and it should be taken into consideration not just 'do as you are told'

sorry have babbled on here,just infuriates me so much sometimes.

regards julia

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Oh Julia this what I fear to be honest, I don't have the best feeling towards someone like social services getting involved, mainly as his mood is that low, his anxiety is so high and struggles so badly with depression, I couldn't think of anything worse than someone sticking thru nose in and potentially making it worse!

He is at the minute going from Ok to years very easily, I actually braved the conversation last night about actually pushing for things for him to do and actual placements somewhere, no idea where of course! He shrugged which is a bonus rather than a flat no.

He is just so very sad right now it's painful.

I don't think concentrating on his education is important either so if social services follow that up then they'll get nowhere with me, Im not the type to roll over or do things that could make him worse, but I am coming round to the idea that he does actually need to face his fears and go somewhere, even for couple hours, not necessarily an education setting.

They're going to arrange this mdt meeting hopefully soon. He doesn't have any other issues, he is very mature for his age, 6ft tall, looks older too, but this has an affect in even how he walks, you can actually see how lacking confidence he is, he is clearly suffering.

It's just so ###### that these 'invisble' disabilities are so difficult to get help with, if they're honest, half these professionals don't really know what to do either, so how are we? !

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jlogan1   

well from my experience i wouldnt let then get involved again,i told our s worker just before xmas why my dd wouldnt see her,had been putting it off for weeks but got so fed up with sw phoning and saying she was coming round for dd to say not seeing her,that took the plunge and said' dd told you something and when she heard you repeat it it was all wrong and therefore you hadnt listened to her'and where as most people would just say never mind dd wont do that ,but sw should know that if she deals with autistic and aspergers,good thing is havent heard from her since ,told her the ball was in her court as to how she was going to sort it because i was fed up with trying to tell dd that it didnt matter when to dd it does matter!so at least we have had nice peaceful xmas and new year but expect phone will ring this week!obviously i want whats best for all my kids but just dont seem to get the help from ss,so will just try and manage by myself,at least the house is happier that way.

also my ds has lots of reptiles and lizards ,can you believe s worker told me i should take them put of his room (like i have a mansion and could put them elsewhere!!) and he like you son lives for xbox and his virtual friends in america who are on a different time so he spends tome at night on it sw say we should turn it off at 10pm end of story,my answer would be at least he is communicating with people if we turn it off he wouldnt speak to anyone!funny thing was when we told paediatrician what sw said her answer was 'no way you cant just take away the things that are important to him' so at least we have her on side,but just goes to show do sw really know what they are dealing with?we just live day by day each being different and walking on egg shells at moment because i know if ds gets upset between now and tommorow morning he will not be able to get into school ,so just keeping fingers crossed,at least it will be a step and then perhaps sw will back off!but as you said and i totally agree education is bottom of the list at the moment its just getting through each day and all we want is happy kids not ones that are so miserable because they are being forced to do things that they cant,i just hope that in time things will improve,my dd now goes out in the car 2-3 years ago she wouldnt have even done that so there is light at the end of the tunnel just depends on each child how long the tunnel is!!!with 3 of them our tunnels are pretty long !

when you say it effects on how he walks is that beacuse he you can see lack of confidence,difficult to describe i know but my ds is like that doesnt stoop or anything but just doesnt walk with any confidence,as though he would like to just fade into background and hunch up.

i dont know kids what we would do without them?

mind you without out my cat i think i would turn doo lally,at least she takes my mind off thngs!

regards julia

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I'm only allowing the clinical psychologist to speak to ss cos u think she really wants to help and doesn't know what else to suggest. I'm not happy, but I'll fight if I have to. His home tutor was like that; she used to say he was rude if he wouldn't come down, she'd sit for an hour while he was upstairs going on and on about did he not understand the consequences????!!!!! I could've knocked her out! I complained and got rid of her luckily!

 

We cope day by day too, in fact some days it's hour by hour! I can't begin to imagine how it must be x3 for you.

 

He almost hunches over. He fiddles with his hair a lot, patting it down as such. He looks like almost flinching for want of a better description. Awkward almost, def like he wants to disappear.

 

I find I'm the only one who deals with it and I know sometimes I get it wrong but I know that's best this way. Although I do question should I 'make' him or encourage him to do stuff, in his est interests etc, as I do feel I encourage this recluse mode at times cos if how anxious he gets at doing stuff, u want him to be happier more than anything in the world.

You're right, kids are the most important thing in the world, my 16 year old son is so left out cos he is a good boy, poor kid is invisible at times, feel so bad... It's like he has to just fit in so as not to cause problems, he is such a good lad but it's hard to explain to kids about being sensitive especially with aspergers!! The abuse my good boy gets off his brother at times in temper is awful. I hate them arguing.

 

I hold out for a crack in the dark tunnel too, hopefully ;)

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jlogan1   

mine chews the sleeve of his hoody,and our situation isnt helped by the fact the home tutor(who he sometimes sees at the local community centre)because he doesnt want his space invaded,is the wife of the head of social work department,who tells me he knows best!but at the end of the day he doesnt have to live with it he goes home!and i'm left to deal with unhappy children,hope things all work out and work on the basis it can get better!

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jlogan1   

hi just to let you know it didnt work,didnt matter how much convincing i did the walls came down at 4pm yesterday and decided he couldnt cope with going into school!!! not too surprised,arguement went on well into early morning,him comimg out with any excuse he could find ,worst bit being that when he then says he will go next week and i say yes have heard it before and never happens that is why he should do it now,he then says i am knocking his confidence and strops off!!!so we will see what happens next monday but wont hold my breath,have tried saying go its only an hour and at the end if you cant cope again fone you tried but just wont do it,wouldnt be so bad but he has spent the last 2 weeks since he said he wanted to go enthusing about it ,never mind here goes another day !!

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Sally44   

If your child is refusing school you need to get referred to Clinical Psychology and CAHMS. Ask the person who diagnosed your child to refer you, or your GP. Specifically request that you are referred to a professional that has experience of working with children with autism.

 

I too had a multi agency meeting where SS were invited. They too said "he has to go to school". They also asked me if I felt I needed "any training" to deal with my son.

 

I told her that my son was under ClinPsych and CAHMS who had stated that his behaviour was "typical of a child not coping in school" - and I had that in writing. I also had the full support of ClinPsych and CAHMS who said they were "astounded by the number of educational issues".

 

I asked the SS what qualifications she had regarding autism and not surprisingly she had none. CAHMS and my GP had said that "currently xxxx is unable to attend school due to his anxiety". So there was nothing SS could do to me.

 

The LA did write to me and say they were going to get the EWO involved. I responded by sending them copies of the correspondence with ClinPsych and CAHMS and CAHMS wrote to the LA and sent me a copy of the letter they sent to the LA. This made the LA back off.

 

What is useful for SS to do is to assess the child and carer for what they "need". And then that may be a support worker or respite that either SS provide or you get Direct Payments and pay for the services yourself by buying it in privately.

 

This isn't about you being bad parents. It is about the child not being able to cope in the educational environment the LA are trying to get them into.

 

Go to Clinical Psychology and CAHMS. Get as much evidence as you can about the child's needs and then go to a SEN Educational Tribunal for each and every child. You need to search and find a suitable school. Ask your LA for their list of maintained, special, approved and indepent schools for children with an ASD.

 

You need to know if the peer group in the school have similar needs and are of a similar cognitive ability. Then ask for your child to be placed in the school that meets their need. If the LA disagree, go to a Tribunal and let the Panel decide.

 

SS are not autism specific professionals.

Edited by Sally44

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Julia, I can just imagine what type of day you had!

I've been there with refusal to the point he would still go, get out the car and walk off whether it wind, rain or snow! Then he went in and sat in hall, then just stopped going totally eventually. But that's when his depression kicked in, and his confidence was low, prob due to how they dealt with it all. I don't envy you at this point.

 

I've been reading a thread by dark shine and it really pains me to see things he/she writes (sorry don't know) when it sounds just like my boy, and u don't have anything useful or constructive to offer, which pains me greatly. I don't have answers to half our issues, I often don't understand half the reasons why stuff goes wrong daily, or why he feels so bad, so in response to what Sally said, if in honest, and most people should be too, as parents we don't come with training, or handbooks do we, do if social devices asked me te question did I need some training then the answer would probably be yes. As should most people's answer, cos it is all blinding, and frustrating and confusing and heartbreaking watching all this.

 

Like I said a few posts ago, I'm not interested in the eduction side, some might say in wrong, but my son isn't stable enough to have to cope with the pressures of anything right now. His psychiatrist has refused to reinstate Meds even after boy asked for them back, he said he needs to be med free and compare. Something else I saw dark shine say; they listen and say see u in 6 wks. I'm slowly realising patents have the biggest input in kids that have this problem, and we ate the ones who have to get on and deal with it every day. I struggle, especially at the minute. He had upset last night and I told him we were gonna start think about doing something and a meeting with the powers that be to decide what options are and that even though he will find it hard eventually, it will make him feel better, to which I got a shrug, not a no, but that means nothing, it's all wait and see.

 

One thing I have found is when something else takes the focus off, for example If the others have a row that doesn't include him, he seems to liven up, it's like he is pleased the focus isn't on him.

 

Today, it's been ok, ish. Tomoro, I selfishly escape and go to work and pretend everything is normal for ten hours. :)

 

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I've had two different education welfare busy bodies, one on, the current one, vile. Buy how rubbish his first school were at making referrals , handling him, getting everything so so wrong, an I have camhs to back me up on it all, they would be wasting their time. ..... And my emergency back up when education issues rear their ugly head again if all and I mean all, else fails, de registering him. He can find education when he chooses later in life, if he chooses. :)

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Just a quick update; education dept have gone with exactly what I requested and offered not school as his provision, which I thought was great. His response was 'try just give me anything to get rid and that doesn't help'! I've got an mdt meeting next week where, based on the usual one way conversation ( from me) I'm gonna ask for a placement for him, part time, possibly one afternoon a week, as he seems to want (or has shrugged his shoulders anyway!) to want to socialise a little. I think this is more cos he is desperately depressed on no medication, we've had a horrid 3 weeks, and it's not getting better. He was scratching himself with a smashed cd the other day, just cos he got beat on FIFA. We've had horrid bouts this week, going to see psychiatrist and psychologist tomoro, to beg for medication just to take this nasty edge off. It's what he wants.

Not one day has been ok for him lately an it's crucifying seeing it. I've never seen him cry so much. He has smashed things, his things, he is angry and feeling lousy.

My poor boy is desperate to be 'normal' yet just stepping foot outside is massive. I don't think he will attend anywhere as I think his anxiety will stop him but I'm hopin he is that desperate to get out and do something that he overcomes it. Fingers crossed! Not that it helps :)

If all else fails, I think I'll need medication! :)

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Sally44   

As horrible as all this is. Put it all down in a letter and send it to CAHMS before your appointment. Detail dates and events such as the harming with the CD. Then at the appointment you can discuss it and then ask the psychiatrist to PUT THEIR ADVICE IN WRITING TO YOU.

 

Although you say you are not even looking at education now, in 6-12 months you might be, so you want these difficulties in writing so that they can be included in any Statement.

 

At some point in the future you may find an independent ASD specific school that ticks all the boxes and you will need all this evidence of his needs and difficulties to fight to get a place there that the LA would have to fund.

 

If you leave it until he is okay, he maybe assessed as being okay to return to a mainstream school.

 

Now is your window of opportunity because he is so ill and he is not in school.

Edited by Sally44

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Yeah I'm expecting social services to be there a the email copied in an address I didn't recognise. Should be interesting...!

I thought we'd reached a breakthrough when he seemed almost interested in attending something somewhere, although today he is adamant he doesn't want to go anywhere' typically!

They've finalised his statement based on not school.net which is fine for now, although he doesn't wanna do that either! He doesn't want to do anything which I've told him isn't gonna happen. But the statement woman has said it can be assessed continuously to ensure its right for him. Which is good, I've also told her that if he did ask to attend somewhere then it would have to be asd specific with qualified people etc, she accepted that straight away so I don't seem to have a battle with them to fight which is good :)

I'm just hoping he does choose to attend a placement at some point, for his sake, although I'm not holding my breath at the moment!

He seems calmer the past couple days, I used the psych appointment time as I didn't want Togo over everything with him present again, I don't think it's fair to make him listen at times, this worked well, maybe I should do it more often as he never contributes anything ever anyway!

He has been given new medication to try, fingers crossed, third time lucky etc!!

I want him stable and a bit less anxious and maybe even a bit happy. I can only hope anyway :)

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Had meeting today with clinical psych, education woman & ss. Was quite anxious about it but clinical psych mainly talked which is what I wanted, social services woman actually said I could probably be the one who needed some respite!!!! Although I'm not holding my breath with them yet ...! Basically they are taking it to panel a week on weds and going for outreach worker to come out and build a friendship with him to see if that can't prompt him getting a bit more sociable... Again, not expecting miracles! Not school program will be sorted within next two weeks, they'll give him a computer and program and a mentor to email and work set online.

His mood is a bit better for now, which is good, I'm not ambitious enough to think everything is fixed, but I'm less anxious so for now, it's calm and that's a bonus. (he still doesn't want online learning at all so no doubt battle will commence again once it happens!) :)

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Had meeting today with clinical psych, education woman & ss. Was quite anxious about it but clinical psych mainly talked which is what I wanted, social services woman actually said I could probably be the one who needed some respite!!!! Although I'm not holding my breath with them yet ...! Basically they are taking it to panel a week on weds and going for outreach worker to come out and build a friendship with him to see if that can't prompt him getting a bit more sociable... Again, not expecting miracles! Not school program will be sorted within next two weeks, they'll give him a computer and program and a mentor to email and work set online.

His mood is a bit better for now, which is good, I'm not ambitious enough to think everything is fixed, but I'm less anxious so for now, it's calm and that's a bonus. (he still doesn't want online learning at all so no doubt battle will commence again once it happens!) :)

My son has anxieties about school we had hoem tutor since oct 2010 but a nurture unit has been provided fro him to attend since last september and hes not happy about going there now after meeting at school thye agreed it would be 2 hours a week and start slowly again ...at the meeting i asked for elearning asaway for him to get education as he is missing out his pc is his fasination and i thought this would be the logical step for him we are in process of staturtory assessment i am goign to ask for it as plan b if nurture unit doesnt work they all keep going on about how hes not mixing with his peers......but thats the thing that stresses him the most.....i know how you feel you can never relax and think ok thats it sorted because things change every day ....

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Sally44   

Ask Social Services about Aiming High.

 

This is a Government Funded scheme giving 'short breaks', which is a legal requirement for the government to provide.

 

With Aiming High your child would get allocated hours per year eg. 100 hours. You will be given a list of service providers and you choose which of those you think have a similar client base to your son. That provider will match your son with one of their carers.

 

We have a young man that comes to our house to see our son once a week for a couple of hours.

 

When he was very anxious, they would stay in the house or play computer games - and you can go out if you want.

 

Now he goes out to the cinema, or they go to the local supermarket to spend his pocket money.

 

They basically do whatever the child wants to do.

 

So if your son loves films, they could go together.

 

A social worker, or other professional involved with your son, needs to refer you to Aiming High. But that might be a good way of your son getting to do some stuff he likes - even if it is just going for a walk with someone. And you get a couple of hours a week break.

 

It doesn't sound like alot, but believe me it makes all the difference. When my son was too anxious to even leave the house, I was a prisoner in my own home. Just to get out and do the weekly shop and have a cup of coffee helped me through those difficult times.

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Sally44   

What exactly did CAHMS talk about? Did they suggest anything or identify needs etc. Did anyone minute the meeting?

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My clinical psychologist at camhs has been my only constant through all this, she chaired the meeting, it was about her making sure services were at least available for him to access even if he didn't want to. It's always minuted there. Outreach seems to e their in house equivalent here I think, she told me all about the stuff they do, and having access to outings and even a flat that they can go to to play games etc.

I'm happy with these two big steps for now and await then working or at least sometimes, and he would never leave me and go anywhere right now. When they asked me if I get any help I said no, and that it was best I deal with it, he relies on me, my psychologist summed it up well; it's hard to see where he ends I begin... We've almost merged into one person... Which is true! And apparently very common.

 

This not school program apparently has to be logged in to every day but it's up to them whEther they do work. The idea/goal is that it gets them interested again and fires them up....we shall see :)

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Missed a bit... He doesn't really leave the house either, only to his dads or when he is up to it, which is very rare recently, so I'm hoping access to stuff where e can go places and attend etc up to staying over anywhere are way ahead in the future. They may be referring to aiming high as outreach, as she did discuss staying out eventually .

I'm just hoping he makes use of this service, he often refused to come downstairs for home tutor, but it's trialling everything until I hope something works for him and gets my desperately sad boy feeling alive again.

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Sally44   

I would recommend you ask about Aiming High anyway, just to see if it is an option.

 

The person does not have to take the child out. They can come and stay in the house, or accompany parents and the child on an outing. It is about a gradual approach to be-friending a child - which can take months - to enable that child to eventually begin to do things they want to do.

 

I understand what you are saying about him being very attached to you. But that is not healthy in the long term. This maybe something to learn about and think about, but to have on the back burner. And, anyone from Aiming High can just be with you and learn from you.

 

If he likes playing games on the computer, the carer can come to your home for an hour [whilst you are still there] and just play computer games with your child. Any additional contact/relationship is going to be good for him. And it could be a year later that you begin to do different things.

 

The Aiming High budget is from April to end March. We did join the scheme half way thorough, but I don't know if this is still possible.

 

So just ask about it, so that you know what you need to do if/when this maybe a useful service to you.

Edited by Sally44

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