Saneasever
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Posts posted by Saneasever
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Hi Sally 44,
Due to her academic abilities we've been advised mainstream is the best option - she excels at literacy and art/craft activities, and is often bored in lessons because they are so dull/she knows it already or frustrated because she doesn'y get it. We're thinking Ridgewood is are only viable option - similar intake to her large primary plus has an ASD worker and unit within, so they would know what they are dealing with to at least some extent. Husband and I have already visited and think it may work - but who knows?
Regarding statement... I'm just waiting for the paperwork to sign off on. We've already agreed to an early 6 mnth review as PIMIS have been advised to get involved. It will be them pushing for her extended hrs and PE from what I gather. (That, plus Autism Outreach need to be seen as making good progress, I guess). As far as the 'moving numbers' and possible dyscalculia go, that's all pretty new stuff that hasn't been included as yet. I'll be pushing for that in 6 mnths time.
There is a Plan B ASD school @ an hrs drive away, but I don't see (A) coping with the car journey. Other than school and home, we're barely able to get her out of the house as it is, and she gets car sick very quickly.
CAMHS have seen us as a family 3 times to make an assessment of (A)'s needs, but we're still waiting to see them without (A) to discuss the way forward. But it doesn't look hopeful as (A) has taken a dislike to the Psych who's been reviewing her. (A) thinks she's an idiot for interpreting her pictures and dreams as something other than what they are, but is far too polite to tell her she disagrees with her. It's already taken us this long for CAMHS to see her as they kept fobbing us off by saying her issues are all school based so should be treated by Autism Outreach. It was only once she was doubly incontinent and burping again that our Paed Consultant pushed for a CAMHS referral.
I know that (A) is showing signs of depression, and who can blame her when she knows for a fact that school didn't believe a word we had to say and started the whole chain of events that led to hospital and beyond. We kept her there because we figured she'd been through so much already and needed some continuity - thankfully a new head was in place by the time we were out of hospital and she's very supportive and understanding of (A), to the extent that certain members of staff are forbade to teach/be in class with her.
I read a poem of hers last night that talks about her feeling bullied and even suicidal at times. I asked her about it this morning and she broke down in tears again saying 'school's just so hard'. What on earth am I supposed to do about that?
It breaks my heart seeing her this way...
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Sorry. I wasn't being literal when I said child abuse, and yet at the same time I was.
My daughter 's abdo pain, coupled with her being 'fine unless I was around', plus her bringing food back up within 24 hrs of being on the ward were all seen as indicators that I was a child abuser. As such we were effectively held hostage for 3 months, nobody believed a word I had to say, we had to contend with social services who, out of the blue, (no prior knowledge or contact) set up a child protection conference and forced her onto a psych unit (despite our pleas that this would destroy her) and no, she never should have been there - it was seen as a viable option to keep her away from me whilst they proved their theories - in other words, school, hospital and social services all screwed up, didn't follow their own procedures, damaged my daughter - so excuse me for being tired and trying to hold it all together when just getting up or out in the mornings is now complete and utter hell.
I'm trying to do my best and wrote on here as a last result because I'm so tired of trying to do it all on my own.
And just for the record, I've had to contend with the fact that I've probably got Aspergers, too. So add that into the equation and it's no wonder I have bad days from time to time. Wouldn't you if you had to constantly bury how you were feeling and function well for the sake of your daughter who's suffered so much already?
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Sorry Mods. I should have posted in Help and Advice section. Not having a good day...
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I'm at that stage right now where I'm tired, weary and fed up. I'd like my own private cave to go and hide in and nobody but me would be allowed in - I'm guessing many of you reading this will know what I mean. But seeing as I've no option but to carry on, I will tell you a little of my story...
Daughter (A), 10yrs old, diagnosed with Aspergers 18mnths ago following 3mnths of child abuse courtesy of a very well known children's hospital. (A) left hospital a shell of her former self, and now has many issues that are new - very high anxiety levels, a shedload of sensory issues and incontinence to name just a few. (She was doubly incontinent for a while, so I suppose I should count my blessings).
Things went pear shaped for her in Yr 3 (somatised abdo pain due to the stress of not coping), Yr 4 was about just tenitively coping and building up her days at school, and Yr 5, although she seems outwardly more confident now (more 'open' body language, laughing on occassions) she's struggling big time. I'm so tired of her crying in the mornings because she hates school so much right now. All I ever hear is, ' it's too hard. I can't cope.' But she hasn't a clue why...
(A) has input from Autism Outreach, will be fully statemented as of Yr 6 (she's got the full 25hrs - just waiting on interviews, CRB's etc) and one of the first things they are going to want to do is extend her school hrs (she manages 3 full days and 2 half days) and get her to do modified PE on a 1-1 with her support worker.
My concern is that (A) is always complaining of being tired - she's simply 'lost' her stamina (not that she had heaps to begin with) since leaving hospital.
(A) has always had maths difficulties (yes, I'm finally getting to the point), and @ 6mnths ago I stumbled across an Aspergers article that mentioned Dyscalculia. It seemed to fit (A) perfectly, but she was coping so badly at school that I did nothing about it. Just before the end of last half term, she brought home some maths homework and said. 'it would be so much easier if the numbers stopped moving around'. She'd never said anything before as she thought it was the same for everybody, but apparently printed numbers (or those on an analogue clock) literally move as far as her eyes are concerned, and then she confuses 4 for 6, 0 for 8, things like that.
Does anyone know what test I should be asking for, and would Scotopic Sensitivity explain her exhastion all the time, or is this just yet another crappy side effect of being abused courtesy of the very people who were supposed to help and protect her?
The poor child still blames herself for not coping in Yr 3 because in her head, (if she'd coped) none of what happened after would have caused her (and us) such harm.
Our lives are still very much upside down since all of this.
Does anyone have a magic wand?
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Hi everyone. I'm hoping somebody reading this will be able to help me, because I can't find any info. online.
My daughter (A. 9yrs old) is due to see an educational psychologist as part of her statementing process, but I've got a problem with this.
In a nutshell, my daughter was originally going to see a female who 'is great with kids on the spectrum' (so a professional involved with my daughter enthused to me). She went on to say she's spent x number of years working with her and how I had nothing to worry about as A. would be fine with her.
This did not happen. The school told me I would have to wait as she was not taking any new referrals until after the new financial year. The new financial year started and I was told she's no longer available - all ed. psychs have had a shift around and you've got somebody new we know nothing about (says school head to me).
Same professional as before speaks with me later in the week (once I've found out who new ed. psych. will be). She's VERY disappointed. Only worked with him once but he doesn't get 'kids on the spectrum'. Couldn't see the needs (of a high functioning case she had) and turned down statementing twice.
Can I refuse him and request the woman we were supposed to have? My daughter (and husband and myself) have had a rough year as I was accused of abusing her prior to hospital realising she was on the spectrum - 'you're child's fine. She's only an issue around you' - that kind of thing. They have to be VERY careful with her at school in terms of which teachers do and don't work with her. (Big school - A. doesn't cope when her teacher's not around but he can't always be there).
It's not just the fact that this guy hasn't got a good track record - I'm worried he's the wrong person to be seeing A. in terms of upsetting her and the added psychological stress he may cause. She's a delicate soul now more than ever before.
What can I do?
Review of first IEP is this Tuesday and we're still waiting on a date to see ed. psych.
Can I refuse him or not?
Can I request her instead, or will we have to go privately?
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I agree and would look into dyspraxia, if only to rule it out. Also, if she complains about any other pains, it may be worth seeing the GP - again to rule things out. I've had so many things dx'ed as an adult that would have saved a lot of grief and ensured some support/understanding were put in place if they were known about as a child. However, I would like to say there is hope - my handwriting was almost unreadable until I left school at 18. I was really lucky to be spotted by a lecturer at university who had an interest in handwriting and found me 'interesting'!
He started again from the beginning, teaching me to write, and now, although I'm very slow, I can write very neatly if required. I've also found it easy to teach handwriting, because I've explicitly been through the process as an adult.One thing from your post occurred to me - if she's writing in pencil does she have the same problem? If not, there could be (amongst others) two issues - pressure needed to work a pen (what type of pen is she using?) or the fear of mistakes. Try different pens as well as pen grips. Is her hand grip correct or back to front? Would a non-smudging pen help? I hated using pen at primary school (and avoided it in secondary school too!) and my school reports keep saying that I should be progressing to pen - but I was also a perfectionist and couldn't cope with mistakes, plus it was more painful to use a pen. Does she use a pencil in maths? Are her numbers an appropriate size? - this might give more indication of where the problems lie.
She could go back to using handwriting paper which specifies how big letters should be - or print a really dark copy of this she can use as guidelines under her paper.
If she's doing handwriting practice, have her copy from paper of the same size and make the expectation that her words more or less fill the same line length.
Does she write more that others because she filling the same amount of space overall, or is she writing less? If she's writing more, she may be concerned about only being allowed to use one side of paper and having too many ideas to get down?
I think it's difficult without knowing the child and with her history to suggest other things - I taught a child who had tiny tiny unreadable writing but it was dealt with at a level the child could easily cope with through humour as a class (giant piece of paper, me getting out my magnifying glass etc.) - but I wouldn't do this if I didn't feel the child concerned would cope or anyone else in the class would take it too far - you need to know the child well for this.
One other thing just occurred to me - have you tried getting her to write on a mini whiteboard (most schools have these)? You can get lined versions, mistakes can easily be changed, and when she's happy with the piece, it can be photocopied to make a permanent copy. It's not a long-term solution but will get her into the writing habit.
Thank you so much for taking the time to respond...
A.'s handwriting size is the same whether pen or pencil is used. She's trying a 'Yoropen' at the moment - it's certainly more comfortable than the schools' Berol Handwriting pen, but still no joy on increase in size for school.
She has a slanted writing board on loan, has a 'SitN'Move' wobble cushion to help her concentrate, has various grips we're trying out at home, writes beautiful, neat large handwriting in her special handwriting book from school (when at home), but still no increase on size at school...
O.T. doesn't believe she's dyspraxic as can 'plan out' and 'execute' her course in the sensory room with no real problems.
She grips her pens at home very tightly and slightly crosses over her thumb onto finger.
Suspect it's anxiety related as have found out since writing this post that A.'s work has been going downhill since January.
Her teacher is really lovely this year, but he's at a loss to know what to do.
Waiting on a CAMHS referral, but that letter hasn't arrived yet as GP's secretary is off sick...
Once again, thanks for taking the time to respond...
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Hello everyone. Just wanted to thank you all for your posts...
We're in the process of trying to get A. statemented, and as part of that the Head Teacher is involved. She matter-of-factly told me that A.'s work has been going downhill since January, and that although she isn't a doctor, it's obvious that the small handwriting is connected to her not coping.
So... we're going down the CAMHS route in the hopes that they can help her before it gets any worse.
I'm under no illusions that if this doesn't help, I'll walk away from it. But what will I do then???
Incidentally, although not 'officially' diagnosed, my husband and I believe I'm also an Aspie, and I'm a darn sight worse since the trauma of BCH last year (accused of 'fabricated illness by proxy' for those of you reading who haven't read the other stuff).
Thanks to those of you who take the time to read these posts. Wish I was better at it...
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Hi. My daughter (A. 9yrs old) hates writing, but has to do it for school. Not only does it physically hurt her hand after a while, the size of it has got so small that it's not readable. She has the 'perfectionist' element of hating using a pen for writing because it makes a mess (smudges), falls out of her hand and when you make a mistake you can't get rid of it. But my question is this - has anybody else had this problem, as my daughters' ASD outreach worker has never come across it? (I'm talking about the size of her handwriting- sorry it's not that clear).
I should mention that A. was hospitalised for 3 months last summer - she wasn't coping with school, school weren't listening, school and school nurse contacted social services, allegations of 'fabricated illness' banded about, child protection, enforced stint on psych ward to rule out me abusing her, etc, etc. (In other words - HELL for 3 months).
If this isn't an 'Aspie' trait, does anyone know what it could be, and does anyone have any idea of how I can help her? (I should probably also say that her writing was equally as small at home when it began to 'shrink' - it's been shrinking since January. Now that she's more settled at home (who knew you could take your child to hospital so that they could psychologically abuse her - she's only started to settle in the past 6 weeks or so), her writing is better (larger at home). It seems to be that if it's 'important' work (work to be graded by a teacher) it's just too small to see.
Sorry for rambling - I hope this make sense to somebody...
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Hi. Hoping somebody reading this might be able to help. My daughter (A. 9yrs old, Aspie) has a problem of some description at school. I say 'a problem of some description' because, try as I might, I can't seem to find a way of getting her to find the right words to explain exactly what it is without her getting so anxious that she starts to cry. All I've managed to glean is that it's something to do with a group of children at school, and the problems getting worse (her words). She hates school now (as a result) and will find every cuss word that isn't swearing to vent just how much she hates it, or she'll cry and get herself really worked up. She's never been one to act like this about school, and I don't know what to do to help her. She's only been diagnosed for 5 months, her peer group isn't aware of her diagnosis as yet (she's hoping to tell them at some stage after this half-term with the help of the ASD outreach team). How can I help her if she wants to explain but can't? (Incidentally,(A.) saw me writing this, hence the rabbit at the beginning. She also wants me to tell you that it's VERY IMPORTANT). I know that she really wants to tell me and get some help, but she just can't. What should I do???
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Social Services have agreed that a Child Protection Plan should never have been put in place
Doesn't change the fact that it happened, or the resulting trauma, but it's something - and it's in writing. Still waiting on other Social Services complaint for a decision. Also still waiting to hear back from hospital officially, but have heard enough to know that Aspergers training will now be offered. (They're still doing a seperate complaint against the psychotherapist woman who decided I was abusing A. Not sure what will happen there, but at least it's an official investigation). I'm also having to start an official complaint against A.'s school. Can't believe the lies told about me, and only know as they're mentioned in the hospital notes we've paid for. School's notes have basically been sensored to cover their backs...Like I said, it's a small victory... but it's a start.
I'm still shocked by the amount of ignorance surrounding Aspergers in girls. Would appreciate anyones views on taking things further once official complaints procedures have all been exhausted. I need to fight back and get some justice basically - for A., but also for me. I can't even begin to put into words how I feel some days, knowing that EVERYONE was against me and had damned me as an abuser. The irony is that that only changed after A.'s enforced stay on the Psych. unit (where, I hasten to add, she was unofficially diagnosed within an hour or so of meeting her).
The system sucks, guys. What else can I say?
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A.'s had a rough time at the hands of school in Yr 3, but there's a new head in place now who has previously worked at a school with a specialist ASD unit. As a result, school are VERY accomodating now. A. eats lunch in the classroom with a friend or two so she doesn't have to suffer the smells she couldn't cope with last year. That said, if they've got vinegar of any description in their lunch it's a problem... as is 'bacon buttie' day. Thanks for your advice...
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Hi. Not sure if they'll be of any use, but have you tried 'Parent Partnership' - I think they offer advice/information/help on school related issues. Hope it helps...
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So... things are starting to calm down a little in our household. Still lodging complaints against school, social services and the hospital, but hey, it's nearly Christmas!
My question is this... A. has sensory issues that are tenfold since leaving the hell of hospital - smell is a real problem, as is noise/chaos. ANYTHING with vinegar in will not be tolerated - to the extent that we're not having ketchup/chilli sauce/salad cream/BBQ sauce with our meals either. IF we do, (aside from the fact that it puts A. off her food which she then won't eat) A. treats us like we're contaminated for at least the rest of the day - washing our hands/eating a mint/cleaning our teeth - we've tried them all to placate her, but the idea of our 'contamination' won't go away. Eg. Dad eats a sandwich with salad cream and then washes his hands. A. will worry when dad touches ANYTHING afterwards as he's now contaminated and contaminating other things.
We're on an O.T. waiting list, but any advice in the meantime would be hughly appreciated. Many thanks...
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I'm in total agreement with the fact that you have made the right decision. You may be able to get additional support from the Autistic Outreach Team.
Please try not to worry. I know it's hard, but it sounds like you're doing your best for your daughter and you shouldn't condemn yourself for that. -
Just wanted to say that I can more than empathise with your situation. I've actually got in place an agreement with one of my daughter's doctors where I don't take her in unless absolutely necessary, but phone for advice instead. My pharmacist is also very good on advice over the phone. Hope you have a more peaceful Christmas...
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We've had a really rough couple of weeks.
This week my son was sick in school and sent home for 2 days.
I'm glad I took him to the GP because he said he was not ill and said I should keep him home for two days and then send him back in.
He wasn't sick again, and was perfectly fine as soon as out of school.
I kept him home for two days as the GP said and he was fine.
He went in on the next day and was okay in school and said he had a good day.
This morning was the school play. He arrived in school and was sick again.
I phoned another doctor who knows his history of vomitting due to anxiety or excitment. She has written a note that says he should stay at home until after the holidays.
It isn't ideal. But it is a relief because. I can't get anything done because I have to stay in incase school phones. Then I have to go to the GPs if he has been ill. And all these upsets are affecting him and we really need some calm.
This note will cover me so no-one can say I am deliberately keeping him off school.
We need to meet with school next year and talk about what we can do.
When I went to get him, he said he still wanted to do the play because he wanted to "impress" me. Bless.
But I admit, we've all had enough and need the break.
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Just to say that, according to his email footer, M.G.'s boss is a consultant clinical Psychologist - CAMHS. Not sure if that's good or bad, but do know that 'somebody' had spoken to him regarding our case prior to us contacting him (prior to formal complaint procedure), and it wasn't M.G.
Thanks for your help, guys...
Today's been a long day...
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Thanks for the info. Karen. M.G.'s paperwork has the CAMHS stamp on it with 'Dept of Clinical Psychology'.
We have made an official complaint - this is the beginning of the process.
Do you have any other advice? She actively pursued false allegations against us, brought in social workers, enforced a stint on the psych. unit, gave a 'professional opinion' of A. can't eat any food other than hospital food (she gave this opinion about a week after I and her dad successfully got her eating again. Had tried M.G.'s approaches, but they didn't help A. to eat so we ditched them and did it ourselves). She even stopped us from taking A. out of the hospital grounds - she didn't leave the hospital for two and a half months...
M.G.'s negligent actions have caused so much harm to us all as a family. I've posted elsewhere today about how A.'s emotionally scarred by all of this.
I can't let this go on and know that others will suffer.
Any more advice would be welcome...
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An interesting question might be to ask what training psychotherapists within the organisation have in ASD ?
The psychotherapist is very unlikely to be suspended if her line manager knows she knows nothing about ASD.
It is perfectly possible that her line manager also either knows little about ASD or has an opinion about ASD that is rather unconventional compared with most current professional thinking.
Some very well known psychotherapists within the establishment have very different views regarding ASD to most professionals in the field.''Live Company psychoanalytic psychotherapy with Autistic,Borderline,Deprived and Abused Children'' by Anne Alvarez was recommended to me.Anne Alvarez is very highly regarded by many professionals.
I do not know whether you could get hold of a copy before Friday.However if the psychotherapist or her line manager happens to have come from a background where recommended reading includes the book above they are unlikely to change their whole philosophy because of one complaint.
At least on Friday you may be more aware.
Do you know what job the line manager does ? Is she/he also a psychotherapist or is she/he a psychiatrist ?
If you do not make much progress on Friday I would suggest you contact PALS for your area.PALS will advise you regarding how to make a formal complaint to the NHS trust.You could even do that before Friday if you wish.
If a formal complaint has been lodged it will demonstrate that you are serious.A person from within the trust that is not so closely connected to the psychotherapist will probably also deal with the complaint on your behalf.
PALS should have a copy of the trust complaints procedure and it would be worth obtaining a copy and reading it.
You may even decide to cancel the meeting on Friday and just pursue a Formal complaint.
It is extremely difficult to get a professional in the NHS suspended unless there is evidence of complete negligence or abuse by the professional.On Friday you could find that the line manager either supports the psychotherapist or attacks you.
Even if you are in the right it is possible that you could come out of the meeting having lost your temper and provided evidence that you are difficult to deal with....which the psychotherapist may then just use as her defence.
I hope I am being helpful.
I have had enough experience with many professionals across education and health over the course of twenty odd years personally,professionally and as a parent to know that meetings such as these do not always go well.
PALS have a web site on which you can find the one for your local NHS trust.
The Trust should also have a web site with a copy of the complaints procedure.
Karen.
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Hi again, everyone. Sorry I'm posting a lot at the moment.My daughter's not the same since 3 months stint in hospital (please see Meet and Greet section for details as haven't the energy today to explain it all again).
Today, she cried for over half an hour because she didn't like the clothes she was wearing. Clothes have NEVER been an issue prior to hospital and diagnosis, but now she only wants pink and gets upset if it isn't.
I've explained that she can't pick and choose - it's a case of what we've got (which isn't very much at the moment as have had to give loads away due to growth spurt / not liking it any more. That, plus she's not really coping with shopping in general).
She keeps picking up cold after cold - which makes coping even worse for her.
I've had to tearfully explain to the dentist that we couldn't go this morning as A. spent over half an hour crying, saying she had too much to cope with and couldn't cope. I've also had to cancel school this afternoon...
I just don't know what to do, and it's heartbreaking to see A. not coping. She's just not my little girl anymore, and I don't know how to help her...
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Thank you. Will contact them tomorrow.
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Hello everyone.
Can any of you recommend any good books / web sites that will help me gain a better understanding of my daughter (A., nearly 9yrs old, newly diagnosed 'Aspie').
She's prone to high levels of anxiety, has sensory issues (hypersensitive to strong smells and loud noise), and is somewhat clumsy - yet beautiful, kind and loving...
Having had a hellish 3 months in hospital with her, we're finding it difficult to know if her behaviour at the moment is 'Aspie' in origin. We're thinking some of it may be 'separation anxiety' (she's regressed and is very cuddly these days), or could it be emotional trauma?
She's a bright, articulate child, yet so not herself since our time in hospital. Other than school (which is staged re-intergration at the moment), getting her out of the house is hard work. She used to enjoy her friends, but I'm not even sure she wants to go to (one of her) best friend's birthday parties that's in a months time... Should I try and encourage her to go, or let her lead the pace and accept a 'no'?
Would welcome your input...
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Hi everyone.
Have had a productive day making phonecalls. Spoke to Social Services to get complaint ball rolling, set up a meeting with school to talk about viewing my daughter's school records (before making a complaint against them), but most importantly of all, I'm at the Children's Hospital on Friday to speak to 'Mary Moo Cow's' boss.
'Mary Moo Cow' is my daughter's name for M.G. - the psychotherapist who ignorantly accused us of 'possibly' abusing our daughter. My daughter, A., doesn't have a malicious bone in her body, but would like to see this woman go to jail for ever. We, on the other hand, will have to make do with trying to get her suspended.
(Should probably point out that A.'s an 'Aspie' (recently diagnosed), but hospital had no training to spot it 'til forced onto a Psych. unit that caused the poor child additional emotional harm. Subjected to Child Protection Plan, Social Workers, etc...)
So... any advice / words of wisdom, anyone???
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Hi. I'm a Newbie to this site. We've been through similar - in the process of trying to get justice regarding false allegations made against us, etc. 
Are you similarly trying to 'fight the system'?
Our daughter (A., nearly 9yrs old, 'Aspie') has been put through additional trauma as a result of 3 months in hospital - I'm in the Meet and Greet section if you want to know a little more about it.
It sickens me to know that other families are still at risk of losing their children due to IGNORANCE regarding the way ASD can present - especially in girls.
You'll need to write to Social Services if you want to try and get your names cleared. It's on my TO DO list for this week.
Hope things are improving for you...
Scotopic Sensitivity or Dyscalculia?
in General Discussion
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The problem is, they did not look at every reason. The hospital psych concluded VERY early on that it was child abuse. We have the hospital paperwork to prove it - she did not do her job properly.
And to answer your earlier question, yes, we are seeking legal advice against the hospital. Sadly social services are untouchabe, but once again, we have proof that they did not follow there own guidelines. We are still havingmeetings with them to try and prevent this travesty from ever happening to anyone again.
And no, I did nothing wrong. The SALT who diagnosed my daughter is attached to the hospital where this all happened and was absolutely appalled at what they put us through as a family. She had specifically warned them prior to us that high functioning girls 'presenting symptoms' can mirror those of child abuse, and she offered training to the hospital. The hospital turned down her offer of training - so we suffered the consequences. That, plus our timeframe coincided with a very public failing of social services and so they were told to treat everything as abuse.