My summary of the last 4 weeks can be described in just one word...HELL!
We have been under investigation by social services because 'Someone' reported us anonymously for child abuse. Not minor, but real serious stuff. Like how Duck has had 2 urine infections in her 9.5 years and therefore must be sexually abused. Like how giving her the sedative in the correct dose my GP prescribed is neglectful and abusive, and how my blogging about our lives is emotional abuse.
I discussed the allegations with my GP. I do love my GP, her immediate response was 'Well, of course you are being blamed. Its often one of the most common issues with this type of autism. Blame the parents first' She went on to point out that we have fought hard for Duck, attended EVERY appointment and never given up. She reminded me that any abusive family would not be pushing so hard, but trying to hide away from help and support. I needed to hear that! Needless to say the social worker investigated thoroughly and found no cause for concern about abuse and has closed the case.
She has however, suggested that Ducks behaviour may be because we have told her too much about what we think it wrong with her, and that could be cause for concern and its something we have to watch. Husband and I disagree. We have told her very little, we have explained we feel she has a form of autism and that is why she has meltdowns and finds some things hard we have shown her a few details about autism and as I work with an autistic child, autism is not a taboo subject in our house. Her brother knows a little more, but he is older. What has not helped is that when Duck visited a friend in October for the first time after school, I explained to the mum about our concerns, on the basis that I felt she needed to know in case she had any issues whilst Duck was there. Her daughter was then overheard in school telling Duck she had mental health issues. That comment has come back on us as parents as part of the concern of 'giving her too much information'. In all honesty, I would do it again! I would not let Duck go to some ones house without speaking to the parent, no matter what the risk involved. I had never met the parents and did not want a minor issue causing a meltdown because of poor understanding.
Now the concern is that Duck is being difficult because she has an excuse to be difficult. We disagree. Duck is being difficult because she isn't coping. She is not coping socially (she needs to take a teddy everywhere with her, even if he stays in her bag, he still goes to school) She is not coping emotionally (constant meltdowns, chest pains GP has verified as nothing, tummy aches) and she is not coping academically (issues over home learning she says the work is too hard, but doesn't want to move down a group in case friends laugh at her). Its not poor parenting. Its poor understanding.
Duck has lots of sensory issues, which we have finally been referred to Occupational Therapy for. One issue is her noise sensitivity. School and home have totally opposite views to this. School have never had cause for concern about noise sensitivity, however, at home, she has jumped from three quarters of the stairs down into my arms (to this day, I do not know how I caught her) in total panic because of the fire alarm going off. She does not cope going out to pubs or events where its noisy, she often complains of little noises annoying her, like the fridge buzzing. We brought her some ear defenders at Christmas as she tried them at a kids group and was amazed at how beneficial they were. She uses them a lot and since getting them has enjoyed social events much more with the ability to block out any unwanted noise.
So why do school not see any issues? Why does Duck behave totally differently at school with things like this, it doesn't make sense. Until you look into the Jeckyl and Hyde of autism.
School went to a play the other day, Duck asked to take her ear defenders, so I let her. Normally I dread these kinds of show, because Duck comes home in a vile mood, with a headache and generally complaining of not feeling well and being very distressed. I assume its the noise, although I cannot prove this. This time, however, with using her ear defenders, Duck came home in a brilliant mood. No headache, no complaining. She thoroughly enjoyed the show and kept talking about it with more enthusiasm than I have ever known. A coincidence? I don't believe so.
The concern regarding Duck knowing too much about what 'may' be wrong with her links into this very strongly. School implied they felt she did not need the ear defenders as she has never shown any noise sensitivity in school. This could be an implication of FII, Fabricating Induced Illness. In other words, it could be seen that we am making up some of the issues for our benefit, for money or attention. Along with the implication from others that we have led Duck on to behave this way, we could be in line for more difficulties. FII is common especially within the world of autism, where children can have Jeckyl and Hyde characters and the school only see Dr Jeckyl but home see Mr Hyde. There was an article in the Mail about it not long ago. To read it, click HERE. These people had a diagnosis for their children and they still got falsely accused. We don't even have a diagnosis as yet.
I also disagree that the school have never seen noise sensitivity issues in Duck. Every year Duck has complained to me about the amount of shouting the teachers do. This year, she has been seeing behaviour support, she has confided in him, several times, that her teacher shouts too much, school are aware of this and deny that's the case. I support the school here. Duck has had 5 different teachers in her 6 years at primary. ALL of them apparently shout too much and ALL of them have shouted directly at Duck. Apparently. So I would say its one of two issues, either Duck has had a really bad run of teaching staff and managed to get the worst teachers in every year, or its not quite as Duck describes. Could it possibly be that Duck feels like everyone is shouting? Could it be that she possibly has noise sensitivity where by everything seems louder than it really is? I believe this is a sign that she is not coping with the levels of noise.
I have also raised a concern with the school previously regarding Duck feeling a need to put her hands over her ears in a situation where she was not coping. This has happened at least a couple of times that I know of in recent months. Why would Duck feel the need to do that? It could be plain rudeness and it could be defiance. Or, it could be a sign that she isn't coping well. Or maybe, just maybe, she is anxious and more sensitive to noise. Meaning that the conversation she is listening too is too loud. She has told me she puts her hands over her ears when its too loud and if she feels like someone is shouting at her. Noise sensitivity is an issue here.
At home, if we tell Duck off, even in a calm manor with no raised voice, she will often yell back at us 'Stop shouting at me'. We are not shouting. It just feels that way to her.
Duck doesn't react to the school bell any longer, it goes off several times a day so she has got used to it. In lower school, she used to complain to me continuously, but the longer she has been in school, the easier she has found it. The school bell is also the fire alarm, so she has got used to that too. In lower school, she would grab a friend and they would go out together if the alarm went, but as she has grown up, she has learnt to deal with it better. She still complains about it. She doesn't like it. But she has learnt that its a regular alarm and it does not affect her in the same way our alarm at home does.
I asked Duck what she does when the classroom is too loud and she doesn't like it. Her reply was that she isn't allowed to put her hands over her ears as she has been told off for it, so she pretends her ears are blocked and makes a buzzing noise in them to drown out the sound. School have previously commented that she sometimes appears to be disinterested and not paying attention. I wonder if this is linked? I am hoping Occupational Therapy offer a hearing test. Maybe then we can find out just how sensitive she is.
I think that Duck displays subtle traits in school, and because they are just too subtle, they don't see it. Not through lack of trying, through one teacher to 30 children and the total inability to see everything that goes on. Most of Ducks traits are subtle, especially in school. They have seen issues though, its not all sweetness and light. Duck has had minor meltdowns, sat down and refused to move, got unhappy because a teacher did not meet her where she said she would one morning, accidently hit a teacher whilst lashing out at me, snapped a pencil, refused to read and several other defiant and uncooperative issues. All minor so far. But all there and all real. And getting worse. I feel that she is now finding it more and more difficult to contain her anxieties and they are starting to spill out at school.
We have a private assessment for Duck next week. We are determined to get to the bottom of this with our without help of the NHS. We need to know whats causing the problems so we can start to fix them. I don't know if out Local Education Authority (LEA) will even accept a private diagnosis. But it will mean that we know, and we can be headed in the right direction. Duck has to come first in all this. She has been left by the NHS at the bottom of the pile for way too long.
We received a letter from the NHS trust which was sent to our MP after he investigated my concerns about the service offered. This letter clearly says that when Duck was assessed at three and a half, she was borderline autistic. Nobody ever told me that. I was told she was shy and needed school. It goes on to explain as girls develop more complex, it is likely she now meets the threshold for autism. So if the services knew at three and a half that she might be autistic, why were we refused and ADOS when Duck was 7? Why were we refused and ADOS in last December when we were seen again? Why has it taken my MP to get involved and start harassing people for out daughter to get an assessment which she is entitled to? Why. Just WHY????
The NHS is letting families down. I guess that's nothing new. The social worker said to me she was concerned that I had lost faith in the services that are here to help. Well, yes. I have lost faith in them. There are a few people who are trying to help but the rest of them to be fair, are a total waste of space. I have had my trust in the support services shattered in several ways and by several different people. I wont be in a rush to trust them again.
And on with the fight.......