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Saneasever

Scotopic Sensitivity or Dyscalculia?

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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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I do not have a magic wand. The first point I would make is that you have responsibility for your daughter and as such there is no option to go and hide in a cave rather you have to front up to what is in front of you.

 

When I was involved in foster care along with my partner we were often faced with some very complex individuals and it was important for all concerned that we took a pragmatic approach to dealing with those issues. I think this involves looking at your own strengths and weaknesses and building around them, very much a case of 'if its going to be it's up to me' approach. There will be others around family and professionals who will be able to make a positive impact but waiting or even expecting that to happen can be highly frustrating and my personal experiences are treat anything like that as a bonus.

 

My next point is that you are the person closest to your child and so you need to set the agenda in respect to her life. This involves stepping back and writting down all the issues which are confronting her at this moment in her life and rank them in order of priority. On this list should be basic life elements such as eating, sleeping, exercise, leisure activities etc... these are fundamentals to well-being and should not be overlooked in favour of something simply because it has a long medical name. Alongside these items mark the ones which you feel you are able to direct positive and constructive energy.

 

To highlight this point I have been a carer to individuals who have encountered large amounts of sexual abuse and as such did not feel secure in previous home environments. Whilst the sexual abuse was a very significant issue in this persons young life there was nothing I could do about it, I couldn't turn back the clock for the child, nor could I pretend its influences would go away, rather it was on the list, helped frame a context, but I had no influence over it, the child not being at a level to undergo any serious counseling. The second point is I could start to provide a secure home environment and so this was something I would channel my energies and focus into. In this way I had a focus and accepted my limitations, what I will say is children are on the whole very robust individuals and can deal with a lot.

 

From experience I make a strong point that you have to control the agenda and work in a systematic way at dealing with issues a couple at a time. It is all too easy to let others bring things into the equation, schools for example and as a result distort the agenda and compromise what you are trying to achieve. As I said previously you have the unique position of being able to see the bigger picture, but you need to get it organised. You need to develop a proactive attitude not a reactive one.

 

Saneasever your post is in many ways all over the place, and to put things up regarding child abuse and then move to dyscalculia are on two very different levels. I understand you will not be able to go into specific details on an open forum. Child abuse is something which falls into very clear defined boundaries, and I presume if that is the case then you will be as a responsible parent pursuing an appropriate line of action, because any individuals involved should be currently suspended from duties pending any investigative processes. If your daughter is very emotionally unstable at present I think your first priority is to develop routine and good habits around things such as diet and sleep. It is very difficult to get a clear view of of individuals issues when their everyday lives are moving all over the place. Rather against a structured background you can see what the emergent issues are and work on them one at a time in a logical order. I would have thought issues such as dyscalculia would be a very long way down any list I would have drawn up in regards to the children we had in our care and as such was something to be looked at in the future.

 

I know I am coming from this from a different perspective, and as someone with Asperger's an advantage for me asa carer was not being emotionally dragged all over the place by complex scenarios, but I believe a pragmatic approach is essential in certain situations such as the one I think you might be describing. Sorry it is not a magic wand but we have to deal with these things in the real world, sorry, some on the forum possibly think I am a hard nosed male bully, but there goes. I have had a number of very difficult children pass through my hands and have been able to facilitate real progress in their lives by taking such an approach to their care. What I do know is there is no room for self pity those sort of emotions will be picked up by your daughter and are not beneficial to anyone. Yes we all make mistakes and have to learn from them and parenting in such scenarios is never easy but unconditional love will take you a very long way and should be the starting point.

 

Best wishes.

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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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Contact your local childrens' hospital and see if they screen for Irlen Syndrome [scotoptic sensitivity]. Ours can assess and prescribe overlays. But you still need to see someone private to get prescription lenses. I would get the NHS to assess first, and see if overlays help. The fact that she says the figures are moving indicates she has Irlen Syndrome.

 

The tiredness could be a multitude of things including depression, low muscle tone, or just the amount of effort she is having to use every day to get through the school day.

 

What is her literacy like?

 

Each and EVERY need must be in the Statement. Why are difficulties with numeracy [because she has no actual diagnosis yet] not included in the Statement?

 

I would get the GP to refer you to a team of Clinical Psychologists, or CAHMS that have experience working with children with ASD. They should be able to inform school about the anxiety. And that too should be included as one of her needs. If her anxiety is not addressed she could become ill [she has already shown/showing physical symptoms of stress and anxiety], and refuse school.

 

I know it takes a long time to get it all together. But keep on going.

 

Get what you can into the current Statement. Has the timescale to lodge an appeal passed??

 

If it has, then you ask for new diagnosis to be included at the next Annual Review, and you ask school to meet those needs now [although they are not legally obliged to do so until it is in the Statement].

 

If they do or even don't amend the Statement at the AR you can still lodge an appeal about any aspect of the Statement.

 

If things deteriorate significantly over the next few months, you can ask for an emergency review.

 

What school are you thinking of for secondary? You may want to coincide that with any appeal to SEND you lodge and you may want to think about whether an LA maintained secondary school could meet her needs. If she is not coping in primary, it seems unlikely that she is going to deal with a larger, noisier, more complex environment with frequent class and peer and teacher changes for each lesson.

 

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Saneasever I am not advocating to 'bury how you are feeling', but the time and place for working through those issues has to be away from your daughters emotional radar. I feel you have explained the situation far better in this second post, I think it is easy to make the connection from your first that you were indicating your child had been abused whilst in the care of a hospital.

 

I can not say what it feels like to have your relationship with you and your child under investigation knowing you have possibly done absoloutly nothing wrong it must be very difficult for you both and you have my empathy. In life I think it is important that we try to rationalise these things. I have first hand experience of children who have been abused in some quite awfull ways physically, sexually and emotionally. It is a truth that these things do happen in our society, and as such we have to try and stop this sort of thing from happening. In this respect social services and other agencies have a very difficult role to play and have to walk a very fine line. At times they will get things wrong, but at many times they get things very right and I have worked with children who have been extracted from some very difficult and complex relationships for their own well-being. I do feel that at times children do display signs which are in line with levels of abuse, and it is important that people look at these outward signs and consider all reasons. I have had experience with a girl who came into our care who has similarly had issues with incontinence and adbominal pains and she was examined by experts and psychologists on a number of occasions. In some ways this creates a shadow which lies over anyone and everyone who comes into contact with the individual. This includes, parents and their peers,carers and other children, and young adults in our home who were also in care. Whilst this does happen we need to move on and continue to work with and for the childs best interests.

 

As I say I do have empathy and have knowledge of these type of procedures and the mess multi agency approaches can create. I think you need to accept they have a job to do and recognise that whilst you have been on the wrong end of things there is a reason behind what they do. I know this might not make your pain go away but I feel you have to try and draw a line under some issues through being rational about them otherwise they will simply eat you up.

 

At a personal level I feel you have a responsibility to monitor your own mental health and if you are seriously feeling you can not get up and face the day you need to go and seek help from your GP. There are times when we do get into situations where we are not able to cope. I sincerely hope it does not get that far but early interventions from a GP are important. The fact you cay you are trying to bottle this all up worries me greatly, as it should yourself. At the end of the day you need to be in a position to first take care of yourself before you are able to take care of others.

 

Simply trying to help and be honest.

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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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Saneasever I am not advocating to 'bury how you are feeling', but the time and place for working through those issues has to be away from your daughters emotional radar. I feel you have explained the situation far better in this second post, I think it is easy to make the connection from your first that you were indicating your child had been abused whilst in the care of a hospital.

 

I can not say what it feels like to have your relationship with you and your child under investigation knowing you have possibly done absoloutly nothing wrong it must be very difficult for you both and you have my empathy. In life I think it is important that we try to rationalise these things. I have first hand experience of children who have been abused in some quite awfull ways physically, sexually and emotionally. It is a truth that these things do happen in our society, and as such we have to try and stop this sort of thing from happening. In this respect social services and other agencies have a very difficult role to play and have to walk a very fine line. At times they will get things wrong, but at many times they get things very right and I have worked with children who have been extracted from some very difficult and complex relationships for their own well-being. I do feel that at times children do display signs which are in line with levels of abuse, and it is important that people look at these outward signs and consider all reasons. I have had experience with a girl who came into our care who has similarly had issues with incontinence and adbominal pains and she was examined by experts and psychologists on a number of occasions. In some ways this creates a shadow which lies over anyone and everyone who comes into contact with the individual. This includes, parents and their peers,carers and other children, and young adults in our home who were also in care. Whilst this does happen we need to move on and continue to work with and for the childs best interests.

 

As I say I do have empathy and have knowledge of these type of procedures and the mess multi agency approaches can create. I think you need to accept they have a job to do and recognise that whilst you have been on the wrong end of things there is a reason behind what they do. I know this might not make your pain go away but I feel you have to try and draw a line under some issues through being rational about them otherwise they will simply eat you up.

 

At a personal level I feel you have a responsibility to monitor your own mental health and if you are seriously feeling you can not get up and face the day you need to go and seek help from your GP. There are times when we do get into situations where we are not able to cope. I sincerely hope it does not get that far but early interventions from a GP are important. The fact you cay you are trying to bottle this all up worries me greatly, as it should yourself. At the end of the day you need to be in a position to first take care of yourself before you are able to take care of others.

 

Simply trying to help and be honest.

 

 

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.

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Then you need to ensure that ALL needs are included in the Statement and that provision is quantified and specified. Have a look at www.ace-ed.org.uk on their "getting the Statement right". Also look at www.ipsea.org.uk for their legal responses to questions most often asked by parents.

 

Basically if it isn't in the Statement it won't happen. And any wording that is vague or ambiguous needs to be changed to quantify hours of input and the staff/professions that will do it. So no words like "access to, such as, opportunities for, as necessary, when required, regular, significant" etc. They mean nothing. You cannot prove if it is being provided.

 

There are independent ASD specific schools out there for mainstream children who cannot cope in that environment. My son started on last November after being out of school for nearly a year.

 

He was vomitting due to anxiety, and also had various tics such as a cough, chest slapping, blinking etc. He now has an Anxiety Disorder and OCD and is now on a low level of sedative and prozac, which has helped enormously - and I never thought I would end up with my son out of school or on prozac at age 11!

 

CAHMS and ClinPsych were very good with us and said that his anxiety was typical of a child not coping in school. They also said he had serious self harm behaviour.

 

Anyway, do what you can for now to get the Statement as specific as you can. If you appeal once the Statement is finalised, that could give you some time to get additional needs into the Statement, rather than waiting for the Annual Review. It depends whether the diagnosis will come inside of 6 months or longer. Lodging an appeal usually gives you about 6 months until the appeal date.

 

Ask CAHMS or Clinic Psychology in writing [always put things in writing!], whether your daughter should be forced to extend her time in school when she is refusing and saying she cannot cope and is demonstrating x, y and z physical signs of stress.

 

They told me to only use "gentle encouragment", and at that stage I was practically dragging him into the taxi!, so I knew he would not agree to go. He really did get very ill, - but often it is ony when you get to that stage that you can prove to a SEND Tribunal that the current placement cannot meet the child's needs, and only XXXX independent ASD specific school can.

 

There are a number of school organisations; SENAD, PRIORY etc that have schools around the UK.

 

You also need to consider if an independent EP or SALT or even OT report would help you get what your child needs. But if you think it might, hold off until you are at secondary transfer AR phase, and the Statement has been finalised, then appeal for the placement of your choice and get independent reports, so that they are not older than 6 months by the time you go to appeal.

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I also wanted to add that you can have dyscalculia without scotopic sensitivity. My son has both dyslexia and dyscalculia. He was prescribed irlen glasses before he was diagnosed, but mainly for problems with bright light. He does not appear to see the letters/numbers moving.

Edited by Sally44

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Saneasever, I am not trying to pick an argument, and I am not questioning anything you have said either, rather I am trying to help. I respect you for looking at my profile page and hope you can see where I am coming from.

 

What you are doing is highlighting there are reasons behind what has happened to you things like the 'Baby P' fallout for sure will have set a context at a national level. I also think it is the nature of psychologists because of their training to attatch labels to what is presented in front of them and once they have drawn a rough conclusion they tend to build ancillary events and minor evidence around their initial beliefs. But like all humans they can get things wrong, it sounds very wrong in this case.

 

I think in many ways the default setting in the system is one of 'it is child abuse' and I can see some reasons behind this thinking. In my own experience I was very aware of the fact as a foster carer that this was the default position. The experience I am drawing upon was when we recieved two sisters aged 7 and 11 who had come to us in an emergency situation, the older one had report to an adult that there was a dead man in their house. This was in fact true as she had woken to find that a friend of her father who lived in the house had died of a heroin overdose and she discovered the body. The lives of these two kids was trully appaling they had less than 10 days school attendence between them for their entire lives, they stole food to live off were surrounded by heroin addiction and prostitution based out of a squat. The initial behaviour of the two girls could not have been different the younger one was nosiy boisterous and very resilient the dominant character. The older one however was very reserved and quiet. In the initial days she was trying to be very clingy to me and was trying very hard to impress me but paid virtually no attention to my partner. This was against a backdrop of bed wetting, soiling clothes, and eating issues and complaints of abdominal pain. My partner had difficulties when it came to getting her new clothes as she would not undress in her view etc.. After about 3 or 4 days we informed social services of our concerns, in the meantime I tried to keep a very big distance and would not be alone with her nor would I let another 15 and 17 year old boys who were with us on respite care.

 

Saneasever I am explaining this as a real life scenario to highlight this is the sort of thing these people are faced with day after day and they opperate in a safety first mentality. I have heard a number of professionals in this field say if it looks like child abuse it normally is child abuse, their own evidence may substantiate this, it does not however mean it always is child abuse. In my own experience the initial reaction was likewise to cut a lot of ties with the childs parent to whom she was very clingy. Her younger sister was very relieved to get out of the situation, the older one desperate to get back into it. When there was contact I know it was very carefully observed in controled environments as were my interactions with the child in trying to understand what her concepts were of relationships with adult males. To these professionals they are simply doing their job. I also have experience that many of them are highly detached in their approach, knowing what they have to deal with at times I can kind of understand this, but it does mean working with them is very difficult.

 

In my own experience I knew i had to simply get on with caring for the children we had assigned to us and I knew to my core that I was one of the good guys. I can't go into how this eventually panned out but I had to work with people at times who I suspected of being possibly a bad guy, it was not easy. In your own scenario where you know you are a good guy I think there is a natural reaction to try and likewise find bad guys. I personally think that this is now down to the people you may assign the case to in the legal sphere let them find out, this is what we had to do in our own experience. What we could do is effect what happened from the day the two girls came into our care to the point they were integrated back into thir mothers life a reformed prostitute and ex heroin addict. We managed this with the youngest in about 9 months the older one took a good bit more time to get to the same positive point in her life. We had a job to do and had to focus on it. Likewise you have a job to do in rebuilding structure around your own relationship with your daughter which has been through a lot. My advice is the same, keep it simple and focus on the basics and rebuild a strong foundation. I am not saying that foundation is not already there but it is often a good idea to do some maintenance work and check everything is really solid before trying to build on from there.

 

Hope this helps a little, things challenge us in life, overcoming those challenges is what makes us grow as individuals, you will come out of this experience a stronger person, it might not feel that way at present but as humans we are very resiliant creatures.

 

best wishes.

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Sorry for the complicated answer, scotopic sensitivity with complications of dyscalculia.

When I had scotopic sensitivity syndrome (now cured by chelation) it affected a number

of things, my ME relapses were more frequent, dyslexia was badly affected, fibro was worse

in fact everything was worse apart from my IBS and EDS which arent affected by ISSS anyway.

 

The specs work by filtering out the wavelengths of light that are causing your daughter problems

for me it was yellow and green and red.

 

There is some evidence that abuse can cause or exacerbate sensory problems in children and adults.

 

Personally I would assess her for both to cover both bases and possibilities.

 

http://www.eyecare.ie/behavioural-optometry read a bit further down, if you can go for colorimeter

(correct spelling) lenses as these are a lot cheaper but work using a similar method.

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