Today is the 15th February. Those of us in a battle with PDA itself, or the diagnosis of it are fighting a war to get the condition recognised as it should be. We are also fighting a war to get the professionals who work with our children or diagnose or support us in any way to recognise this as a specific condition.
In the UK, some NHS trusts recognise, diagnose and treat PDA. Some deny its existence in any shape or form. Others, like Berkshire NHS, where I am agree it exists, however, they also believe that because it has similar traits to Obsessive Deviance Disorder, they will label as ODD. They say that according to the NICE guidelines PDA children display the same oppositional behaviour as ODD and that the treatment for PDA is the same as ODD (Webster Stratton programme) and therefore is PDA is suspected, a diagnosis of ODD is given as this condition exists in the medical reference guides used by all persons. I really hope you understood that because I am totally confused. In one part of the letter which I have, it clearly acknowledges that PDA exists. Then it describes the situation as above.
So, does PDA exist or not? Are our children, who show sometimes extreme autistic traits, suffer severe anxiety, have various sensory issues, struggle socially, show poor understanding of certain forms of communication and are really finding it hard to fit in really ODD?
If so, why does the National Autistic Society recognise PDA as different to ODD?
Why does the Elizabeth Newson centre specialise in PDA?
Why do so may private healthcare people show more understanding of PDA than ever and NHS specialist could?
As I said, the arm is fighting. We are fighting for fairness within the NHS, for fair diagnosis systems, for better understanding and for our right to find the best help possible for our children.
We are having a PDA awareness day today. We are sharing pictures and blogs across facebook and twitter. Some of us have emailed our MP's.
We are guiding people to two places. One is the PDA resource page and the other is to the On line petition to get things changed.
Please will you help? We need people to share these and share on facebook THIS STATUS TOO. This status has all the details on that you need. It also has the link to the PDA resource page which in turn has a link to the petition.
Join our fight. Lets get PDA on the map, where it rightfully belongs.
Saturday, 15 February 2014
Friday, 14 February 2014
Sensory issues with my little Duck.
I have been asked about SPD (Sensory Processing Disorder). This is something that I feel Duck shows signs of alongside PDA/autism.
SPD is a condition which affects some of a persons senses. Now if I am totally honest, I have very little information about it. I have not researched it other than what I have been advised to look up by Occupational Therapy. What I do know is how it affects Duck. I touched on sensitivity in her hearing in my last post so I thought I would spend a little time explaining things in a little more detail.
There are 7 senses, yes, contrary to popular belief, there are 7, not 5 as we all learnt at school. The regular 5 are obviously hearing, sight, smell, taste, touch but then there is a further two that I had never heard about until I got the details from OT, these are...vestibular sense (movement and balance) and proprioceptive sense (body awareness). These are the two senses which are not known about very much.
Then, each one appears to have an 'oversensitive' (hypersensitive) and an 'under sensitive' (hyposensitive) so, basically everything is double. That makes 14 areas of study for me to look into.
I have already explained about how Duck reacts to noise. She is hypersensitive.
Sight sensitivity
Duck shows no issues with her sight sensitivity. She has slightly weak eyesight, but that's very mild and there are no concerns. She does not appear to react to light and she shows a very slight under responsive system in response to lack of attention to her environment.
Smell sensitivity
Duck shows no issues with most smells, although she does react to very strong smells, this is very occasional.
Taste sensitivity
Duck is hugely taste sensitive, she has always refused strong tasting foods and stuck to bland tasting things only.
Touch sensitivity
This is one of the worst areas with Duck. She is hyper sensitive to so much. Firstly clothing, she wears the same pair of trousers to school every day, they are too short, they are old and fading and they are not in the best shape ever. But she wont wear any others. She is sensitive to texture of foods, currently she only manages to swallow liquid foods, she is refusing all solids. She is more sensitive when she is stressed. So during term time she eats even less, during the holidays, I can often get her to eat some solids. She insists on baths being HOT, so appears under sensitive, but she is hypersensitive to pain. She only wears a certain type of underwear, and cant have anything with lace on it. She regularly rips her clothing off saying it itches her and insists on socks being rolled down to exactly the same height on each ankle.
Vestibular sense (movement and balance)
This in an interesting area. You see, Duck is almost 10 years old. She can ride a bike on two wheels, however, she is very wobbly and she wont go up or down a steep, or even slightly steep hill. Learning to ride a bike was interesting. Duck never seemed to 'get it' with bike riding. She would panic and wobble. In all it took years before she got it. We tried every trick in the book of helping her, but she used to jump off the bike, mid ride and scream that it was alive. Then she would pick it up and throw it into the nearest bush. We have lost count how many times we had to dig the bike out of the bushes and encourage her to try again. We never really considered it as a huge issue. We certainly never related it to SPD type conditions. But then we did not know there were seven senses. It all seemed to make sense the day I took the triage appointment from OT and she asked about Duck riding a bike. Duck always used to hate lifts ( I thought it was the enclosed space, but maybe I was wrong) although now days, she prefers lifts to escalators. Both of these fit in the movement category.
Proprioceptive sense (Body awareness)
Poor fine motor skills springs to mind for this one. Duck can control a pen well when she wants to so again, school see no issue here. Yet I would imagine they have never given her aqua beads and asked her to follow a pattern with them. I guess they have never been on the receiving end of a whole box being launched across the room because Ducks fingers cant quite get it. I guess they have not noticed how catching a ball is somewhat hit and miss, probably more often luck or miss from what I see at home. This is yet another area whereby I see things the schools don't. But then I am 1-1 with Duck where as in a class they are 30-1 most of the time. A teacher will never see what I see and will never be able to give as much detail as I can.
Duck has to wait for about 4 more months for an appointment to see an Occupational Therapist. The lead time was 18 weeks, but we have moved on a little. They are trying a new system. They offer a telephone triage appointment within a very short time of the original referral, then they guide you to their new web site which has everything on it that you need to know to start and improve the sensory issues. The plan is that by the time you see a real person, you will have been improving things little by little and that will make a positive place to start your treatment from. I was directed to SPD site and printed off all the relevant pages. Then I sat and went through it all, highlighting Ducks difficulties and also highlighting what we currently do to help, leaving other ideas to try out. After reading through it a couple of times, I realised there was no advice for eating issues, taste. Then I realised there was no advice for smell either. I revisited the website and searched. Nothing. In our triage appointment, I was concerned about the taste issue. The OT told me that children with SPD have issues with the texture of food in their mouths, and this is treatable. I had to explain that Duck doesn't mind food in her mouth, she just has sensory issues with it in her throat, she doesn't like lumps in her throat. The OT told me she did not know how to help that. I had secretly hoped to find something on the website that would help. But there was nothing what so ever about taste/food texture on the site at all. It took 2 days for the OT to return my call. She sheepishly admitted the details were missing from the site and that she would refer it to be changed. In the mean time, she could be no further help. So we got half a job again. We have not progressed much at all. Duck still refuses solids and we have no idea how to help her.
Not that I am getting frustrated, but everything we do seems to be half a job at the moment. Half the autism test. Half the information from OT, half and understanding from school. Half an effort from CAMHS. The only person giving 100% here is me.
Thursday, 13 February 2014
The worst 4 weeks of the year. And its only February.
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.......
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.......
Monday, 10 February 2014
Autism assessment brings more frustration.
Wow. Frustrating is an understatement.
We had our ADOS (Autism diagnosis assessment) this morning. Actually, that's not 100% true. We had half of our ADOS. In order to gain a diagnosis, there has to be 2 people present to asses the child, one speech and language specialist and one psychologist or paediatrician. We were booked to see a Speech and language and a psychologist. However, the speech and language lady was blocked in by flooding and did not make our appointment. So the normal procedure was changed and this is what happened.
Firstly, Duck was seen by the psychologist, she spent 45 minutes going through the ADOS play assessment with Duck and then we left Duck playing on her tablet in the waiting room whilst my friend and I went to go through everything else with the psychologist.
We were told Duck co-operated well, but made no eye contact what so ever. She also made no hand gestures in what she was doing, nor did she give more than one word replies to everything she was asked, although she did remain polite throughout.
We went through her history, her previous assessments and I was asked questions that I had never been asked before. Questions that made me really think about Duck. I was asked so many questions that I cant list them. But one that stuck with me was this; 'Does Duck use hand gestures when describing things to you?' I had to think hard on that one. In all honesty, I can not recall one time where by she has used hand gestures when describing something. I think as far back as I can, I barely remember her pointing to things, she has never used gestures to describe a plane flying, nor when she is 'telling off' other children. In fact, I have never seen her use her hands as a form of speech in any way, shape or form. What's even worse, is I had never even considered it either.
The psychologist spent an hour and a half, interrogating myself and my friend over Duck. We were able to show clips of tantrums, photos of autistic traits and given plenty of opportunity to describe Ducks behaviours. It really helped having someone from outside the family there. She was able to give an unbiased view. What is more important is that both my friend and I felt listened to. The psychologist really understood the Jeckyl and Hyde of autism. She understood how Duck can mask things at school but explode at home. She explained its normal for autistic children to be violent to only 1 person most of the time. She explained its almost always mum. She understood my need to put extra locks on the doors and windows, she understood our need to find out what is really going on with Duck. She understood. All of it, she really understood.
I was not laughed at for raising Pathological Demand Avoidance (PDA). We agreed Duck fitted a lot of aspergers traits, but she did acknowledge she may also fit PDA. She admitted she did not know enough about PDA but she was aware it existed and she was aware that its real. She also said at the end of the day, an austim diagnosis is important, more so than where a child fits in the spectrum. Once diagnosed, the childs needs are met wherever they are. It doesn't matter what end of the scale or what needs the child has. They should be met without a specific label.
The end result of today was that the ADOS score sheet needed working out to see how she scored. This is key. If she doesn't score enough, she will not be diagnosed. Its frustrating to rely on such an old system. We also now have to wait for someone to visit Duck in school to observe her in her social groups. This wont be for about 2 weeks. (This feels like a really long time right now.)
The only good news from the meeting is that the lady who was there has agreed our description of Duck is typically ASD based. I got the feeling if it was down to her alone, we would have walked out with a diagnosis. But its not. Its up to a piece of paper and a second opinion. Once that is complete, they will sit and discuss everything and make a decision.
It could have been over today. We could have had a final verdict. But it wasn't meant to be. We are still waiting. Again.
We had our ADOS (Autism diagnosis assessment) this morning. Actually, that's not 100% true. We had half of our ADOS. In order to gain a diagnosis, there has to be 2 people present to asses the child, one speech and language specialist and one psychologist or paediatrician. We were booked to see a Speech and language and a psychologist. However, the speech and language lady was blocked in by flooding and did not make our appointment. So the normal procedure was changed and this is what happened.
Firstly, Duck was seen by the psychologist, she spent 45 minutes going through the ADOS play assessment with Duck and then we left Duck playing on her tablet in the waiting room whilst my friend and I went to go through everything else with the psychologist.
We were told Duck co-operated well, but made no eye contact what so ever. She also made no hand gestures in what she was doing, nor did she give more than one word replies to everything she was asked, although she did remain polite throughout.
We went through her history, her previous assessments and I was asked questions that I had never been asked before. Questions that made me really think about Duck. I was asked so many questions that I cant list them. But one that stuck with me was this; 'Does Duck use hand gestures when describing things to you?' I had to think hard on that one. In all honesty, I can not recall one time where by she has used hand gestures when describing something. I think as far back as I can, I barely remember her pointing to things, she has never used gestures to describe a plane flying, nor when she is 'telling off' other children. In fact, I have never seen her use her hands as a form of speech in any way, shape or form. What's even worse, is I had never even considered it either.
The psychologist spent an hour and a half, interrogating myself and my friend over Duck. We were able to show clips of tantrums, photos of autistic traits and given plenty of opportunity to describe Ducks behaviours. It really helped having someone from outside the family there. She was able to give an unbiased view. What is more important is that both my friend and I felt listened to. The psychologist really understood the Jeckyl and Hyde of autism. She understood how Duck can mask things at school but explode at home. She explained its normal for autistic children to be violent to only 1 person most of the time. She explained its almost always mum. She understood my need to put extra locks on the doors and windows, she understood our need to find out what is really going on with Duck. She understood. All of it, she really understood.
I was not laughed at for raising Pathological Demand Avoidance (PDA). We agreed Duck fitted a lot of aspergers traits, but she did acknowledge she may also fit PDA. She admitted she did not know enough about PDA but she was aware it existed and she was aware that its real. She also said at the end of the day, an austim diagnosis is important, more so than where a child fits in the spectrum. Once diagnosed, the childs needs are met wherever they are. It doesn't matter what end of the scale or what needs the child has. They should be met without a specific label.
The end result of today was that the ADOS score sheet needed working out to see how she scored. This is key. If she doesn't score enough, she will not be diagnosed. Its frustrating to rely on such an old system. We also now have to wait for someone to visit Duck in school to observe her in her social groups. This wont be for about 2 weeks. (This feels like a really long time right now.)
The only good news from the meeting is that the lady who was there has agreed our description of Duck is typically ASD based. I got the feeling if it was down to her alone, we would have walked out with a diagnosis. But its not. Its up to a piece of paper and a second opinion. Once that is complete, they will sit and discuss everything and make a decision.
It could have been over today. We could have had a final verdict. But it wasn't meant to be. We are still waiting. Again.
Sunday, 9 February 2014
ADOS day
So we had a weekend which was somewhat 'normal' in the context of anxieties, jealousy and general behavioural issues. I was attacked by a pillow several times and the constant repetitive moaning just confirmed why we refer to her as Duck. We sailed through sons party which went well, but as soon as the party was over, the complaining started. Duck wanted presents, it wasn't fair. Duck wanted a new bed, just like sons. That wasn't fair. Duck wanted to go and do the wall climbing experience with him. That wasn't fair either. Duck forgot that she is terrified of climbing walls, high ropes and everything else. She just wanted what brother had, and more.
Then later that evening Duck hit total meltdown. She was trying to do a puzzle whilst sitting on the sofa next to her dad. Dad shouted at the tv because hr was watching sport (his team were losing as usual!). Duck kept shouting at him to 'Shut up'. She was so rude and agressive but we both ignored her. After a few episodes of yelling at him to shut up, duck started punching him. This made a rare change. It was interesting to see how she was agressive towards him. She punched him several times, well over a dozen. This was then followed by a huge meltdown, packing bags, trying to leave home and trashing her previously tidy bedroom. She even left a note saying she was off to find a new home where she was wanted. It took over an hour of tantrums before I managed to calm Duck down enough to get her relaxing in the bath. I can only hope she behaves like this on Monday morning.
Monday is looming and Duck has her ADOS (The very old autism assessment diagnosis) in the morning. Duck doesn't want to go, and I am extremely concerned as Duck can mask almost all her autistic traits for upto 7 hours a day whilst at school. I don't really see how she can be identified as autistic within a 2 hour session. Duck makes good eye contact, Duck communicates well and Duck has good social skills. On the surface.
I have evidence of so many autistic traits its unbelievable. I have photos of her lining cars up, matching colours on Kerrplunk, sitting in baby seats. I have video recordings of her attacking me because I wont go to town to buy sweets, I have voice recordings and witness statements to point out her autism traits. I have her brown owl confirming she tends to stay 'outside' the group a lot, school confirming they have seen issues in change of routine and a friend coming with me to back up everything I say. She commented today that Duck is getting worse. Its no surprise to hear that someone else sees this. She is struggling socially, she is struggling academically and her anxiety levels are through the roof. She is worse. Much worse. I dread friends coming over and hate going to visit places. Duck just doesn't cope and it always ends in disaster and often us leaving early.
Its commonly accepted now days that a lot of autistic children can mask their symptoms whilst at school and explode at home. Its also commonly accepted that a lot of autistic children especially girls don't score enough points on the ADOS to be diagnosed correctly. Its also recorded in the NICE guidelines (National Institute for Health and Care Excellence) that an autism diagnosis should not rest on the ADOS test alone. This means they should listen to me. They should hear my point. They should accept my pictures as evidence. They should accept the statements from others. They should. Shouldn't they??
These are the NICE guidelines for an autism diagnosis procedure..
Children and young people
The following should be included in every autism diagnostic assessment for children and young people:
Monday is looming and Duck has her ADOS (The very old autism assessment diagnosis) in the morning. Duck doesn't want to go, and I am extremely concerned as Duck can mask almost all her autistic traits for upto 7 hours a day whilst at school. I don't really see how she can be identified as autistic within a 2 hour session. Duck makes good eye contact, Duck communicates well and Duck has good social skills. On the surface.
I have evidence of so many autistic traits its unbelievable. I have photos of her lining cars up, matching colours on Kerrplunk, sitting in baby seats. I have video recordings of her attacking me because I wont go to town to buy sweets, I have voice recordings and witness statements to point out her autism traits. I have her brown owl confirming she tends to stay 'outside' the group a lot, school confirming they have seen issues in change of routine and a friend coming with me to back up everything I say. She commented today that Duck is getting worse. Its no surprise to hear that someone else sees this. She is struggling socially, she is struggling academically and her anxiety levels are through the roof. She is worse. Much worse. I dread friends coming over and hate going to visit places. Duck just doesn't cope and it always ends in disaster and often us leaving early.
Its commonly accepted now days that a lot of autistic children can mask their symptoms whilst at school and explode at home. Its also commonly accepted that a lot of autistic children especially girls don't score enough points on the ADOS to be diagnosed correctly. Its also recorded in the NICE guidelines (National Institute for Health and Care Excellence) that an autism diagnosis should not rest on the ADOS test alone. This means they should listen to me. They should hear my point. They should accept my pictures as evidence. They should accept the statements from others. They should. Shouldn't they??
These are the NICE guidelines for an autism diagnosis procedure..
Children and young people
The following should be included in every autism diagnostic assessment for children and young people:
- Detailed questions about parents or carers' concerns and, if appropriate, the child or young person's concerns.
- Details of the child or young person's experiences of home life, education and social care.
- A developmental history, focusing on developmental and behavioural features consistent with the International Statistical Classification of Diseases and Related Health Problems (ICD-10) and the Diagnostic and Statistical Manual of Mental Disorders Fifth Edition (DSM-5) criteria (consider using an autism-specific tool to gather this information).
- Assessment (by interacting with and observing the child or young person) of social and communication skills and repetitive and stereotyped behaviours, including sensory sensitivities, focusing on features consistent with the ICD-10 or DSM-5 criteria (consider using an autism-specific tool to gather this information).
- A medical history, including prenatal, perinatal and family history, and past and current health conditions.
- A physical examination.
- Consideration of the differential diagnoses (see NICE clinical guideline 128, recommendation 1.5.7).
- Systematic assessment for conditions that may coexist with autism (see NICE clinical guideline 128, recommendation 1.5.15).
- Developing a profile of the child or young person's strengths, skills, impairments and needs, including: intellectual ability and learning style, academic skills, speech, language and communication, fine and gross motor skills, adaptive behaviour (including self-help skills), mental and emotional health (including self-esteem), physical health and nutrition, sensory sensitivities, and behaviour likely to affect day-to-day functioning and social participation. This profile can be used to create a personalised plan, taking into account family and educational context. The assessment findings should be communicated to the parent or carer and, if appropriate, the child or young person.
There is a lot of information to absorb for just a 2 hour assessment. The evidence I have is overwhelming, however, the way Duck behaves on the day will have a huge impact on the outcome. Duck is so compliant at school and in other places, especially when I am not there.
Don't misunderstand me, I don't actually WANT Duck to be diagnosed as autistic for me. I NEED Duck to be diagnosed for herself. She needs support. She needs more understanding of how everyday life affects her. The current expectation is that Duck is a Neuro Typical child, and behaves in a similar way to any other child. This is because she has masked everything so well. But Duck is not Neuro Typical. She doesn't behave the same as her peers. She finds keeping up with them hard. Really hard and this is why our friends can see her getting worse.
Friday, 7 February 2014
Ducks dislike to unexpected change of plans.
I have to say the school reward chart has done better than I expected. In all, Duck got 10 minutes golden time today, so she went in well twice. She hadn't hit or kicked me and she had not needed retrieving from wardrobes or underneath beds to get her to school at all. Until today!
Duck got ready well, despite her being awfully upset as it is her brothers birthday (Happy Birthday to our 11 year old, this makes me feel old). Duck was very excited for brother, then had a meltdown as she got no presents. We have this every year. Nothing has changed there. She always is so excited, then has a meltdown when she gets nothing. We have never brought either of them a present for their siblings birthdays, and never will. I am sure we will have the same tantrums for the next 9 years too.
However, Duck did actually say sorry to him for ruining his day (proud moment) then she got ready for school. She was allowed to take some craft stuff in for her golden time. She appeared with a box full of bits which I said she could take as long as she did not expect me to help carry as I knew the school would not help, so she had to be able to manage.
We got to school, expecting SENCO to meet us as normal. Duck walked proudly into the office with rucksack on back and box in hands. Senco wasn't there. :-( Duck did not cope with the news that they were going to find her and in the mean time another teacher would take her through. Duck loves this other teacher. But it was a change to the plan. School have never seen Duck have any issues with change. Today they did! Duck was rude, and I mean really rude in the way she spoke to this other teacher. Saying she cant go because senco was meeting her there. She told me she couldn't leave without senco because that was what was arranged. We coaxed, using the golden time, explaining she would go look for senco right away and everything we could think of. Duck froze, as if in a panic. After a few minutes, I marched her through the door with the teacher and closed the door, leaving quickly. I got a thanks of a footprint in my shin. No hitting though. She would not put her box of bits down to hit, so I got a swift back kick instead.
Now whilst I am horrified at the way Duck can behave, I came home happy about this. Strangely enough, school noted on Ducks autism assessment form that they have never seen any issues with change to routine. I could only see a positive that I had more to explain on Monday at our autism assessment about how she reacted to change. Then I realised, I am only her mum, and I would exaggerate, obviously, wouldn't I? So I called the school. I spoke to the teacher. I asked if she picked up on the issue being unexpected change, she said yes. I asked if she felt Duck was rude in the way she spoke to her, she said yes. I asked if she saw her kick me, she said yes. Then I asked if she would write a statement down for me by the end of today so I can use it as evidence that the school have seen issues around Duck and change of routine and she said YES!!!
I can go to our appointment with more evidence saying Duck has autistic issues and the school are witnessing more and more, even since they filled their form out just 2 weeks ago. I can go and say the change of routine is subtle, but most definitely there. AND ITS NOT JUST ME WHO SEES IT!
Then I got called into school regarding something totally different, less than an hour after requesting the statement. Whilst I was there, a letter was handed to me. It explained how Duck was distressed because she was meant to meet senco and she was 'rooted to the spot'. It also explained how she kicked me and the rude tone Duck used. It went on to say after I left, Duck still refused to co-operate and any attempt of engaging her was met with 'I don't care', 'No', or 'I will stay here' until senco arrived. It wasn't because of her love for senco (although Duck does like her). It was because Duck cannot cope with change. The plan was to meet senco. Duck couldn't grasp that senco was not there. Simple.
Duck got ready well, despite her being awfully upset as it is her brothers birthday (Happy Birthday to our 11 year old, this makes me feel old). Duck was very excited for brother, then had a meltdown as she got no presents. We have this every year. Nothing has changed there. She always is so excited, then has a meltdown when she gets nothing. We have never brought either of them a present for their siblings birthdays, and never will. I am sure we will have the same tantrums for the next 9 years too.
However, Duck did actually say sorry to him for ruining his day (proud moment) then she got ready for school. She was allowed to take some craft stuff in for her golden time. She appeared with a box full of bits which I said she could take as long as she did not expect me to help carry as I knew the school would not help, so she had to be able to manage.
We got to school, expecting SENCO to meet us as normal. Duck walked proudly into the office with rucksack on back and box in hands. Senco wasn't there. :-( Duck did not cope with the news that they were going to find her and in the mean time another teacher would take her through. Duck loves this other teacher. But it was a change to the plan. School have never seen Duck have any issues with change. Today they did! Duck was rude, and I mean really rude in the way she spoke to this other teacher. Saying she cant go because senco was meeting her there. She told me she couldn't leave without senco because that was what was arranged. We coaxed, using the golden time, explaining she would go look for senco right away and everything we could think of. Duck froze, as if in a panic. After a few minutes, I marched her through the door with the teacher and closed the door, leaving quickly. I got a thanks of a footprint in my shin. No hitting though. She would not put her box of bits down to hit, so I got a swift back kick instead.
Now whilst I am horrified at the way Duck can behave, I came home happy about this. Strangely enough, school noted on Ducks autism assessment form that they have never seen any issues with change to routine. I could only see a positive that I had more to explain on Monday at our autism assessment about how she reacted to change. Then I realised, I am only her mum, and I would exaggerate, obviously, wouldn't I? So I called the school. I spoke to the teacher. I asked if she picked up on the issue being unexpected change, she said yes. I asked if she felt Duck was rude in the way she spoke to her, she said yes. I asked if she saw her kick me, she said yes. Then I asked if she would write a statement down for me by the end of today so I can use it as evidence that the school have seen issues around Duck and change of routine and she said YES!!!
I can go to our appointment with more evidence saying Duck has autistic issues and the school are witnessing more and more, even since they filled their form out just 2 weeks ago. I can go and say the change of routine is subtle, but most definitely there. AND ITS NOT JUST ME WHO SEES IT!
Then I got called into school regarding something totally different, less than an hour after requesting the statement. Whilst I was there, a letter was handed to me. It explained how Duck was distressed because she was meant to meet senco and she was 'rooted to the spot'. It also explained how she kicked me and the rude tone Duck used. It went on to say after I left, Duck still refused to co-operate and any attempt of engaging her was met with 'I don't care', 'No', or 'I will stay here' until senco arrived. It wasn't because of her love for senco (although Duck does like her). It was because Duck cannot cope with change. The plan was to meet senco. Duck couldn't grasp that senco was not there. Simple.
Tuesday, 4 February 2014
Reward charts just do not work on Pathological Demand Avoidance
I have said enough times that school are trying, I mean really trying. They have tried all sorts from sticker chart on deputy heads door (Duck just refused to put a sticker up most days) to some morning play therapy type thing with senco and all sorts of promises of guinea pig clubs, jobs and basic bribery. The lastet attempt, to me appears somewhat futile and whilst I am really pushing it with Duck I just fail to get too excited. They are trying a new tick chart. Teacher has put a lot of effort to make it right for Duck. Its a 1 Direction chart, printed in PINK. Duck loves it (to look at). The rule is, every day she goes in well, she gains a tick. Each tick gives her 5 minutes free choice, golden time with one friend on a Friday afternoon. Sounds brilliant. I have used reward charts of various forms to their death. As yet, I have never found anything that works for more than a couple of days.
Extract from The Times 20 December 2011 - For most children the demand avoidance phase will pass, or can be greatly improved through strategies such as rewards and sanctions (sticker charts, time out or a naughty step), reasoning, praise for good behaviour, peer pressure and routine. But these techniques do not work for children with PDA. To read this in full, click HERE
Extract from another PDA blog - Rewards, consequences, sticker charts and so on have not been successful. To read this in full, click HERE
Extract from The Times 20 December 2011 - For most children the demand avoidance phase will pass, or can be greatly improved through strategies such as rewards and sanctions (sticker charts, time out or a naughty step), reasoning, praise for good behaviour, peer pressure and routine. But these techniques do not work for children with PDA. To read this in full, click HERE
Extract from another PDA blog - Rewards, consequences, sticker charts and so on have not been successful. To read this in full, click HERE
You can search for hours, but you will find out that reward charts DO NOT WORK on a PDA child.
I have been told many times they do work and its my parenting that's the problem. Which is fine. That means that the school one will work, wont it? Because, lets face it, I have been getting it wrong for years and the school are going to do it differently, so their way will work their way must be right. Its simple. Honest.
So, yesterday, teacher called me and explained the new chart. She asked me to 'get behind it' to motivate Duck. Which I did. I ran through it last night with her, and pointed out how much fun she could have on a Friday with a friend, and how exciting it was that school are doing all this to help her. She was excited and very happy discussing it.
So she got up this morning. She was very sulky about going to school, although not as bad as she can be. I reminded her of the school chart and asked which friend she was going to invite (staying positive here) she said she did not know. We got to school, into the office and suddenly, Duck froze. I reminded of 'Golden Time' and her reward chart. The receptionist even joined in and said she had heard about that. However, Duck shrugged her shoulders and said 'I don't care'. I had to push her into the office and through the security door, peel her hands off the handle she was clinging onto and fight to close the door. Amongst wails of 'No mummy, No!' Ok so she has had worse days, and today is just day one. I guess it could get better. The reward chart could work. Couldn't it??
PS....please accept my apologies if anybody thinks I am being cynical or negative. I would love nothing more than to be proved wrong and a perfectly planned sticker chart to be the solution to all of Ducks behaviours. But I have to face the truth. Duck is not 'normal' in the context that most people use. She probably never will be. We, as parents have accepted that, and love her as she is. Its a shame other people cant see past the reward charts.
PDA is a type of autism which is consistently under recognised within the NHS. It is a post code lottery which is recognised just 7 miles from us, yet not here. We believe our daughter suffers from this kind of autism, but we have been unable to get a diagnosis as yet. PDA children do not display all the classic signs of autism so often go un diagnosed or misdiagnosed. There is a petition at the top of my page to help resolve this postcode lottery. Please help us to change this situation. There are hundreds of children, teenagers and adults with this condition but they don't get any support because of the poor services of the NHS.
PS....please accept my apologies if anybody thinks I am being cynical or negative. I would love nothing more than to be proved wrong and a perfectly planned sticker chart to be the solution to all of Ducks behaviours. But I have to face the truth. Duck is not 'normal' in the context that most people use. She probably never will be. We, as parents have accepted that, and love her as she is. Its a shame other people cant see past the reward charts.
PDA is a type of autism which is consistently under recognised within the NHS. It is a post code lottery which is recognised just 7 miles from us, yet not here. We believe our daughter suffers from this kind of autism, but we have been unable to get a diagnosis as yet. PDA children do not display all the classic signs of autism so often go un diagnosed or misdiagnosed. There is a petition at the top of my page to help resolve this postcode lottery. Please help us to change this situation. There are hundreds of children, teenagers and adults with this condition but they don't get any support because of the poor services of the NHS.
Sunday, 2 February 2014
Long time no Duck
I have not written for almost two weeks. It's not because I have lost the motivation to write and its not because Ducks problems have suddenly disappeared but its because I have been to angry to write anything that could be in any way constructive. As it is I am still too angry but the whole point of the blog is to focus on Duck, the possibility of PDA type autism and the fight I have to get the right support for her. Its not just about Duck, its about all the children who are suffering at the lack of support from our mental health services. Time and time again I am hearing about people who have been on waiting lists for almost a year for basic services like occupational therapy. We are now on the list and I have been told its a maximum 18 week wait. We shall see. We also have an ADOS coming up. That's the basic autism assessment. Sadly its known to repeatedly fail to pick up on the subtle autistic traits of a PDA child. I am not holding my breath over the results. Indeed, I have Duck booked in for some other, more suitable tests through a private clinic. I am not prepared to sit back and watch Duck suffer any longer at the hands of services who don't listen.
Duck hasn't been going to school well at all over the last couple of weeks. She hasn't been going to bed well either. Life with Duck has been a constant battle. I have regularly had to dress her like a baby, put her coat on her and carry her to the car, a sobbing mess. I have lost count of the physical attacks, punches, kicks and headbutting. I cannot remember how many times she has screamed that she isn't going to school, that she hates me for making her go and how I am the worst mummy in the world for strapping her safely in the car to drive her there.
I spoke to occupational therapy today, they offer a triage phone service for all new referrals. I was asked lots of questions about Ducks sensory issues. I was told Duck probably has Sensory Processing difficulties and they would send me some paperwork and some links which will have information on dealing with SPD in the post. I was not surprised they suggest SPD. Duck has had major sensory issues from a tiny baby and I have raised it many times, its just that until the situation gets drastic nobody listens to you. Sensory issues were raised from Ducks 3 year old assessment and again at 7 and again now. We are only being heard this time because Duck is also showing her violent behavior towards me at school and with other complications, everyone is suddenly worried about Duck.
The sad thing is she explained that children with SPD and eating issues usually struggle with the texture of food in their mouthes which is what OT are trained to deal with. Duck has no issues with food in her mouth, she has issues with food in her throat. Its totally different. Still SPD but mouth texture sensitivity is treatable, throat sensitivity, apparently, may not be. We will have to wait and see but that part of the conversation didn't sound positive. Being realistic, we could be looking at a long time on liquid foods.
Duck hasn't been going to school well at all over the last couple of weeks. She hasn't been going to bed well either. Life with Duck has been a constant battle. I have regularly had to dress her like a baby, put her coat on her and carry her to the car, a sobbing mess. I have lost count of the physical attacks, punches, kicks and headbutting. I cannot remember how many times she has screamed that she isn't going to school, that she hates me for making her go and how I am the worst mummy in the world for strapping her safely in the car to drive her there.
I spoke to occupational therapy today, they offer a triage phone service for all new referrals. I was asked lots of questions about Ducks sensory issues. I was told Duck probably has Sensory Processing difficulties and they would send me some paperwork and some links which will have information on dealing with SPD in the post. I was not surprised they suggest SPD. Duck has had major sensory issues from a tiny baby and I have raised it many times, its just that until the situation gets drastic nobody listens to you. Sensory issues were raised from Ducks 3 year old assessment and again at 7 and again now. We are only being heard this time because Duck is also showing her violent behavior towards me at school and with other complications, everyone is suddenly worried about Duck.
The sad thing is she explained that children with SPD and eating issues usually struggle with the texture of food in their mouthes which is what OT are trained to deal with. Duck has no issues with food in her mouth, she has issues with food in her throat. Its totally different. Still SPD but mouth texture sensitivity is treatable, throat sensitivity, apparently, may not be. We will have to wait and see but that part of the conversation didn't sound positive. Being realistic, we could be looking at a long time on liquid foods.
School are still trying to help reduce Ducks anxiety. I don't know if they have been reading up on PDA handling techniques or if they are just freely experimenting but they have changed drop offs so senco meets us and takes Duck off to her office where they at various games, space hopper races and lots of other fun stuff for 20 minutes, then at the end of the day senco goes back to see her at the end of the day to try and de-stress her before she comes home. It's helping a little bit too. Duck has not been as aggressive, although she remains totally demanding.
Neither senco or I are foolish enough to believe it will work for long, but I am enjoying the simplicity of Duck getting herself ready for school whilst it does last. Duck already says she isn't going to school on Monday, despite being asked to take a card game in to play. We will wait and see what happens!
We have autistic support coming at some point to assess Ducks separation issues. I hope all the work done by senco doesn't stop Duck having a bad morning when she is being observed. The last time she was observed she went in like an angel with no support. I don't know why. Nobody told her and she can't have seen the lady observing but its like she KNEW! I can't help but wonder if a camcorder set up for a few days would be helpful, but I don't know if school can do that or if we could hide a camera enough for Duck to not notice.
Right now its Friday evening and my lounge is TRASHED! Duck and son have built a den to sleep in. They love being kids! They are planning on spending the night 'camping' on the lounge floor, watching DVDs and relaxing with the dogs. As for me, I will be snugly tucked up in my nice soft bed. I am most definitely to old to sleep on a floor these days! Duck And I have been playing cards tonight, as usual I lost its odd that I always lose.
Tomorrow we may be baking, I keep hoping that encouraging Duck to cook and effectively 'play' with food she may be tempted to try something. Its not happened yet, but I will keep trying. Also tomorrow we have a church celebration to go to. There is a puppet show, puppet making, a meal and some evening entertainment including husbands band. Duck has said she doesn't want to go. Well, that's not quite true, she said she isn't going. Quite clearly and very assertively. Then Sunday, the church celebrations continue in the morning. Again, Duck is refusing to go. The problem we have is that although Duck tries to be in charge, she isn't really. We are. And we ARE going Saturday, and we will be going Sunday too. I now have a special 'meltdown' room allocated to Duck and I in church. So if at any point it all gets too much we can go and shut ourselves away from the gawping eyes and meltdown all by ourselves. Organization is the key... Planning the meltdown and making sure Duck is safe whilst she has a sensory overload.
Happy weekend everyone.
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