Ok so I have lost the heart to blog recently. Life has been too complicated.
Firstly, I have been told there are some in accurate details in my post regarding the triad of impairments, which I will look into although I am going to give the technical explanations a wide birth for a while! and secondly I have had so much going on with the allegations of child abuse that were raised to me on Friday evening.
I am a registered child minder and I totally support any child abuse investigation, including that of my own daughter. But what really upsets me is that whilst social services are investigating allegations like my own, which have been made up as a revenge attack from some so called 'professional' who isn't even prepared to give her name, a 3 year old boy dies at the hands of his mother. I do wonder how my accuser would be feeling if that boy had died in our town as a direct result of her wasting social services time and recourses.
I hate waiting. Really hate waiting and I have to wait.
Meanwhile, Duck had a terrible meltdown on Sunday over a cup of tea. Cutting a long story short, she had been shouting at me about this cup of tea for 20 minutes. It was in a lidded cup, but when we got to church she almost threw it at me, saying she didn't want it. I was not prepared to get into a shoving hot tea back and forth, so I whipped the lid off and tipped in the nearest bush as fast as I could. Duck was not happy. In fact, she flipped. Totally. We ended up in the entrance porch to our church with her having a huge violent hour, hitting, kicking and screaming and shouting for over and hour. Needless to say I was not flavour of the month. Any of our church who missed her previous meltdown a few weeks ago, certainly caught this one. We had to shut all the doors between the porch and the church to drown out the noise. We almost always have meltdowns on a Sunday. Its not because Duck doesn't like church, or Sundays. Its because the day after Sunday is Monday. Duck doesn't like Mondays. Duck despises Mondays. She relaxes a little on a Saturday, but by Sunday, she is anxious that school is looming. Poor kid. She is anxious all week, and then when she has a weekend off, she spends half of that anxious about Monday. I get anxious occasionally, everybody does. But I cannot imagine how hard life must be when you get this kind of anxious almost every day.
Monday drop off wasn't too bad. I was grateful because I was distracted and needed to make those calls. But by Tuesday morning, Duck had decided she didn't want to go to school. And she meant it. I had another one of those mornings where I had to play hide and seek at school run times. I found her under her bed crying. I coaxed her out and down the stairs, into her coat, into her shoes and into the car where I strapped her safely in. The other end she was awful. She (as normal) locked her car door so I couldn't open it. I used the key to open the windows so I could reach in. As I did so, a teacher appeared to help, but sadly this just sent Duck into a panic. She shot across the car and out of the drivers door window and started to run away. I made light to her about how she managed to escape and questioned if she could get back in the car the same way, which was just enough to make her stop and turn around. She ran back to me and clung onto my arm screaming not to leave her. Teacher came to chat, and we coaxed/marched her to the entrance of the school. Another teacher appeared and I whipped my arm away and shot out to the car. I saw a third teacher running towards her and all 3 of them trying to calm her and stop her escaping from the school. As I drove away, all I could hear was screams of 'I want my mummy'. :-(. Duck was going in quite well for the SENCO until recently. She likes the SENCO, and is usually cooperative for her. But I have noticed recently, she has had more bad days. Knowing what I do about PDA, I think its safe to jump to the conclusion that she needs a different plan. Something new, to catch her off guard. As for what that may be, I have no idea. That's something I will be discussing with the school when I go to the meeting. Its a big meeting this time. We have 3 different behaviour support workers there. Then we have the head, SENCO, teacher, Social Services and myself. I cant wait. :-)
Wednesday drop off was as awful as ever. Duck had a terrible time in the morning getting ready. She was crying as I led her to the door and put her coat and shoes on. We got to school but she was still really upset and complaining she didn't want to go. When we got there she wasn't too bad, but did cling on to me screaming and trying to chase me out of the office. I could see and hear teachers struggling with her. I have no idea how long it took to get her through. I have to drive off as quickly as I can to stop her attempting to follow me.
Meanwhile I went to my GP for a prescription. She had a chat with me about the allegations and she has also previously looked into PDA for me. She told me that we have done everything we can for Duck, we have attended all meetings, referrals and appointments for her. We have argued with children's mental health services, we have called in an autistic support worker, we have called in a behaviour analyst privately to support us. We have also followed all advice given to us, we have involved our MP to get the referrals Duck needs. We have kept our GP up to date with all of Ducks progress and she is backing us 100% on all the allegations. I commented how Duck could be so 'normal' one minute and then so aggressive the next. She pointed out that this and all Ducks anxiety and behaviours linked really well to PDA. She also pointed out that poor parenting is often the first problem raised as PDA is not understood. I knew all of that. But it was good to hear it from a GP. She really had looked into it for me and I needed to know it.
Thursdays meeting was hard, nobody seems to know what to do to help Duck with her separation, her eating or her toileting issues. It seems I managed to clear up a few points but basically, we have to sit and wait for the referrals that CAMHS have made. Ducks ADOS is in a couple of weeks, for what that is worth. So hopefully things will move soon.
Behaviour support wanted to observe Ducks separation so she was in school Friday morning to see how it went. I didn't tell Duck she was being watched, and there was no way would she have noticed. But from half an hour before we left the house, Duck was really happy and keen to go to school. Typically, she went in the best she had done all term and needed no support of any kind from teachers. She even gave me a grin as she walked in and said 'Bye bye mummy'. Then Senco and I are left banging our heads against a wall....Still, there is always Monday.
Duck was lovely all evening Friday, although it did take me a while to settle her into bed. Saturday she was happy and eating (well drinking) lots, she said she was hungry. I still cant get her to try any real food. It doesn't seem to matter what rewards I offer, or how hard I try, she just panics that she will choke. I am hoping Occupational Therapy appointment will hurry up. She really needs the help here. I have been trained to deal with her anxieties, and the tools for that I still use. But they just don't work anymore. I need more specialist help. Someone who understands the sensory issues around food rather than the anxiety issues. They are different problems. I am trying to treat anxiety. Duck is sensory. I am not achieving anything worth mentioning. Perhaps if I had been listened to when Duck was assessed at 3.5 years old, or again at 7 years old we would not be here now. Its frustrating that I have said for so long there are problems, and I have had several people agree there are a few autistic traits, but nobody has believed me enough to investigate properly. Now here we are with a child who is obviously struggling, she is struggling to maintain academically, struggling with friendships, struggling to grow up and struggling with severe anxieties. And people are worried. I too am worried about Ducks mental wellbeing.
I went out Saturday night with friends. I really needed a break from everything. I had told Duck I was going, and she was totally happy. I had a lovely kiss and goodbye with no moaning. She even went to bed well for daddy.
We are off swimming today. Both kids love Coral Reef water world and we have not been for ages, so I decided its time to go. Son loves it there and is a really competent swimmer, although he does have a very nervous mum when he heads off into the rapids way ahead of me as I have to support Duck. Duck loves going, but she gets anxious around water. We spent 3 years on her lessons for swimming and she finally completed 15 metres. She just panics. It also gets very noisy so she gets anxious over that too. But she still loves going. So we head there first thing, hoping to be in and out by the time it gets too busy. Son will be on the fastest flume, Duck and I will be on the family slide. Son will spend most of his time under the water (much to my terror), Duck and I will be floating on top. This is what weekends are made for.
For anyone who does not know, we think Duck has a type of autism called Pathological Demand Aviodance (PDA). Its not well recognised within the NHS despite being recognised in the UK for over 30 years. I have started a petition to get PDA recognised. Please sign and share. You can find the link HERE
Saturday 25 January 2014
Triad of impairments in Duck.
The triad of impairments in Autism
As I said before, these are the three key areas in which a child is assessed for autism. To be diagnosed as autistic of any form a child needs to meet all three targets. These are;
Communication and language impairments
Social interaction
Flexibility of thought.
Combined they often include some sensory processing issues, SPD, which I will cover separately
Pathological Demand Avoidance is different to typical Autism, as is Aspergers so some of the triad are hard to see.
Lets start with Duck and Communication impairments.
Duck can communicate, almost too well. Her vocabulary is fantastic and she is able to understand and reply to a wide range of questions. However, speaking and understanding is not the be-all-and-end-all of Autism. In fact, the National Autistic Society describe communication abilities in PDA children as;
'Although people with PDA may have some language delays at an early age, there is often a striking and sudden degree of catch-up. Certain elements of communication are not as disordered as in autism or Asperger syndrome, with more fluent use of eye contact (other than when avoiding demands) and better conversational timing. Some language difficulties remain, such as taking things literally and misunderstanding sarcasm and teasing. As an extreme form of avoidance, some children become selectively mute in many situations, yet their parents know they can speak when they want to.'
There is much more to communication than being able to speak. Duck hits all of the other key features which form part of communication. These are;
Understanding jokes and sarcasm
Social use of language
Literal interpretation
Body language, facial expression and gesture.
Duck clearly struggles in all of these areas, this often causes issues as she can react badly to a joke or not realise she has upset or angered someone (unless they are crying or shouting)
These difficulties are obvious in Duck (In my opinion) and I have had other parents tell me she reacted to something badly, and was really 'rude' in the way she dealt with it. Duck will laugh at a joke often, but as I described before, if you ask further, she doesn't really understand the joke its self, just that the situation warranted a laugh...this is social mimicry. Again, common in PDA children.
Duck ticks that box.
Moving swiftly on to Social interaction.
NAS website says;
'People with PDA are often very sociable and can display degrees of empathy previously not thought to be consistent with autism. Sometimes it seems that they are able to understand other people at an intellectual level but not at an emotional one. However, despite their use of social niceties, their social interaction is very often flawed by their inability to see the bigger picture, their lack of boundaries and their desire to be in control of the situation. They often understand rules but dont feel they apply to themselves. As children, this can lead to playground peer group difficulties....When they are younger, children with PDA often engage in a level of pretend play that would be unexpected from children with autism or Asperger syndrome. People with PDA are very good at taking on the roles and styles of others.'
Oh yes! Welcome to the world of PDA. Duck loves to have attention and be in control. She despises school, I strongly believe this is because she cannot have control. As I described before, this control is anxiety driven. Duck cannot cope with loss of control. In the play ground, she has a group of friends, but her social side is very shallow. To give examples, Duck came home telling me she no longer had a best friend because she had played with someone else today. Duck is described by one friend as very bossy and when she doesn't get her own way, she gets stroppy. A teacher described her and much more into role play than 'normal' children of her age. She has written and acted shows, taking control of a large group of people who wanted to be involved. As I said before, she was happy to take a lead role in the church Nativity. Another friends mum described this 'When my daughter is with any other friends, they play all sorts of games, when Duck is here, they play with barbies and nothing else.' Totally in control and totally role play, because it hides the fact that Duck has poor social skills. She always takes dolls and teddies with her almost everywhere, because she cannot cope without them.
Duck ticks that box.
The final point of the triad is Flexibility of thought.
The main key points are;
Difficulty coping with change to routine
Empathy
Generalisation
So I have mentioned how Duck likes change, yet the triad of impairments clearly state difficulty in coping with change to routine as a key point. Let me explain. PDA children like the novelty factor. So, for example, when school have a 'dress up' day or a 'class treat' day or any other event that's different, Duck always goes in much better. This is because the demands are reduces and it holds more excitement. However, coping with change to routine doesn't have to be just school routine. Duck cannot cope to the 'expected plan'. for example, if we have arranged to meet friends and they cant come, Duck cannot cope. Its and unexpected change. If we are going out, even to the shops and we have to cancel at the last minute due to an unexpected event, Duck cannot cope. Whatever we have told Duck is going to happen, she expects to happen. I tend not to tell her she has a friend coming until I know they are on their way, because if they need to cancel, Duck cannot cope. She can cope with change provided she has been warned. So, if we were due to go to the shops the following day and our plans needed to change, that could be explained and Duck would have time to absorb the new plan, so its manageable.
Empathy is a difficult area to cover. Duck tries, she really does to be empathetic. She can be empathetic, but its very shallow. If a friend fell and hurt themself, she would rush to help and look after them and appear really empathetic. But she just doesn't understand unless she is there and sees the accident. Her empathy will be a blank face staring at you trying to figure things out. When one of the gerbils died, Duck said 'Oh well, I hope the other one dies soon too' Regularly since, she has gone out and said 'Has it died yet?' (Its still going strong!) She didn't understand why brother was upset. She is shallow, its dead, its gone. Sorted.
Generalisation. Duck cant generalise. She has to be specific. 'In a minute' means in 60 seconds. 2pm means 2pm. Not 1.59 or 2.01pm. I often find myself saying 'It will be sometime around 2, not at 2 but sometime around then is that ok?' I get the usual 'Yes' in reply, then if its early, she is not happy and if it gets to 2pm the stress starts. 'You said 2', 'No, I said around 2, that could be 145-215'. 'Yes, but around 2 is 2 so its late'. We cant generalise. It doesn't help when friends are visiting and they are late, even by a few minutes. Duck cant get the 'general' idea. It has to be specific. School run in our house starts at 8.20am. Not before, and not after. Even if meltdowns make us late to school Duck then becomes more upset because she will be late and she is due in school 835-840. (She goes in early, before everybody to allow her time to settle)
So, the question raised is Does Duck meet the Triad of Impairments?
My reply is a clear Yes. However, due to the amazing abilities of PDA children, she is able to mask most of her difficulties which makes it harder for specialists to pick up on. The reason most PDA children are not correctly diagnosed. The reason most PDA children are not given the support they so desperately need. The reason we are fighting for better recognition and better diagnosis and understanding within the NHS.
Duck is autistic. She is just far too clever at hiding it.
I have an appointment through for her ADOS, autistic assessment. Its not long, 10th February, 3 weeks Monday. I just hope Duck isn't too clever at hiding it on that day.
As I said before, these are the three key areas in which a child is assessed for autism. To be diagnosed as autistic of any form a child needs to meet all three targets. These are;
Communication and language impairments
Social interaction
Flexibility of thought.
Combined they often include some sensory processing issues, SPD, which I will cover separately
Pathological Demand Avoidance is different to typical Autism, as is Aspergers so some of the triad are hard to see.
Lets start with Duck and Communication impairments.
Duck can communicate, almost too well. Her vocabulary is fantastic and she is able to understand and reply to a wide range of questions. However, speaking and understanding is not the be-all-and-end-all of Autism. In fact, the National Autistic Society describe communication abilities in PDA children as;
'Although people with PDA may have some language delays at an early age, there is often a striking and sudden degree of catch-up. Certain elements of communication are not as disordered as in autism or Asperger syndrome, with more fluent use of eye contact (other than when avoiding demands) and better conversational timing. Some language difficulties remain, such as taking things literally and misunderstanding sarcasm and teasing. As an extreme form of avoidance, some children become selectively mute in many situations, yet their parents know they can speak when they want to.'
There is much more to communication than being able to speak. Duck hits all of the other key features which form part of communication. These are;
Understanding jokes and sarcasm
Social use of language
Literal interpretation
Body language, facial expression and gesture.
Duck clearly struggles in all of these areas, this often causes issues as she can react badly to a joke or not realise she has upset or angered someone (unless they are crying or shouting)
These difficulties are obvious in Duck (In my opinion) and I have had other parents tell me she reacted to something badly, and was really 'rude' in the way she dealt with it. Duck will laugh at a joke often, but as I described before, if you ask further, she doesn't really understand the joke its self, just that the situation warranted a laugh...this is social mimicry. Again, common in PDA children.
Duck ticks that box.
Moving swiftly on to Social interaction.
NAS website says;
'People with PDA are often very sociable and can display degrees of empathy previously not thought to be consistent with autism. Sometimes it seems that they are able to understand other people at an intellectual level but not at an emotional one. However, despite their use of social niceties, their social interaction is very often flawed by their inability to see the bigger picture, their lack of boundaries and their desire to be in control of the situation. They often understand rules but dont feel they apply to themselves. As children, this can lead to playground peer group difficulties....When they are younger, children with PDA often engage in a level of pretend play that would be unexpected from children with autism or Asperger syndrome. People with PDA are very good at taking on the roles and styles of others.'
Oh yes! Welcome to the world of PDA. Duck loves to have attention and be in control. She despises school, I strongly believe this is because she cannot have control. As I described before, this control is anxiety driven. Duck cannot cope with loss of control. In the play ground, she has a group of friends, but her social side is very shallow. To give examples, Duck came home telling me she no longer had a best friend because she had played with someone else today. Duck is described by one friend as very bossy and when she doesn't get her own way, she gets stroppy. A teacher described her and much more into role play than 'normal' children of her age. She has written and acted shows, taking control of a large group of people who wanted to be involved. As I said before, she was happy to take a lead role in the church Nativity. Another friends mum described this 'When my daughter is with any other friends, they play all sorts of games, when Duck is here, they play with barbies and nothing else.' Totally in control and totally role play, because it hides the fact that Duck has poor social skills. She always takes dolls and teddies with her almost everywhere, because she cannot cope without them.
Duck ticks that box.
The final point of the triad is Flexibility of thought.
The main key points are;
Difficulty coping with change to routine
Empathy
Generalisation
So I have mentioned how Duck likes change, yet the triad of impairments clearly state difficulty in coping with change to routine as a key point. Let me explain. PDA children like the novelty factor. So, for example, when school have a 'dress up' day or a 'class treat' day or any other event that's different, Duck always goes in much better. This is because the demands are reduces and it holds more excitement. However, coping with change to routine doesn't have to be just school routine. Duck cannot cope to the 'expected plan'. for example, if we have arranged to meet friends and they cant come, Duck cannot cope. Its and unexpected change. If we are going out, even to the shops and we have to cancel at the last minute due to an unexpected event, Duck cannot cope. Whatever we have told Duck is going to happen, she expects to happen. I tend not to tell her she has a friend coming until I know they are on their way, because if they need to cancel, Duck cannot cope. She can cope with change provided she has been warned. So, if we were due to go to the shops the following day and our plans needed to change, that could be explained and Duck would have time to absorb the new plan, so its manageable.
Empathy is a difficult area to cover. Duck tries, she really does to be empathetic. She can be empathetic, but its very shallow. If a friend fell and hurt themself, she would rush to help and look after them and appear really empathetic. But she just doesn't understand unless she is there and sees the accident. Her empathy will be a blank face staring at you trying to figure things out. When one of the gerbils died, Duck said 'Oh well, I hope the other one dies soon too' Regularly since, she has gone out and said 'Has it died yet?' (Its still going strong!) She didn't understand why brother was upset. She is shallow, its dead, its gone. Sorted.
Generalisation. Duck cant generalise. She has to be specific. 'In a minute' means in 60 seconds. 2pm means 2pm. Not 1.59 or 2.01pm. I often find myself saying 'It will be sometime around 2, not at 2 but sometime around then is that ok?' I get the usual 'Yes' in reply, then if its early, she is not happy and if it gets to 2pm the stress starts. 'You said 2', 'No, I said around 2, that could be 145-215'. 'Yes, but around 2 is 2 so its late'. We cant generalise. It doesn't help when friends are visiting and they are late, even by a few minutes. Duck cant get the 'general' idea. It has to be specific. School run in our house starts at 8.20am. Not before, and not after. Even if meltdowns make us late to school Duck then becomes more upset because she will be late and she is due in school 835-840. (She goes in early, before everybody to allow her time to settle)
So, the question raised is Does Duck meet the Triad of Impairments?
My reply is a clear Yes. However, due to the amazing abilities of PDA children, she is able to mask most of her difficulties which makes it harder for specialists to pick up on. The reason most PDA children are not correctly diagnosed. The reason most PDA children are not given the support they so desperately need. The reason we are fighting for better recognition and better diagnosis and understanding within the NHS.
Duck is autistic. She is just far too clever at hiding it.
I have an appointment through for her ADOS, autistic assessment. Its not long, 10th February, 3 weeks Monday. I just hope Duck isn't too clever at hiding it on that day.
Interesting times
So the end of another week arrives and Duck has been in a lovely mood this evening. She has been drinking her 'food' well and often eating pate on top of her totally soft stuff, so its all in the right direction. I was brave enough to weigh her tonight. She weighs 4 stone 2, which is really good. She has lost no weight since she stopped eating solids over the Christmas holiday. She does look skinny, but not desperately thin. And not the horrid gaunt look I have seen in her before.
My triad of impairments post has been delayed, thanks to todays little episode. And it wasn't from Duck!
I had a call this evening from social services. They have received an anonymous phone call about Duck, stating some rather major issues for concern. Without going into detail, I can see why they are taking an interest. Its a shame most of it is fabricated. Its also a shame that one huge detail that social services have is something that I have only ever told one person. The Muppet! Yep, I told her one thing that I have never discussed before. Its nothing confidential, and its nothing I have done wrong. Its to do with my GP and I have called my GP to discuss it. She agreed that I did the right thing and that the evidence will not stand anywhere. She also told me I have done so much work in trying to get help for Duck and she has all the evidence. She also, (thankfully) saw Duck last Wednesday, and was happy with her weight. Social services were told Duck has been dramatically losing weight amongst other things.
I don't mind social coming in. I called them after Muppets visit and told them they were welcome anytime. I work with children and I totally see the importance of child protection. I/we have nothing that we don't want them to see. I am happy for them to ask whatever questions they feel relevant and I agreed to social contacting my GP, my behaviour analyst and attending the multi professional meeting next week and doing a 1-1 home visit next Friday. Looks like I have a fun week ahead.
Then, I call my GP! I clarified information with her and find out she is totally supportive and happy to co-operate and back up my case.
Then I call my behaviour analyst. I decided we needed a chat in more depth! She was fab. She went through Ducks behaviours with me (again) she verified everything I describe fits a child on the Autistic Spectrum. Right this second, I am sweeping PDA to one side......
I have just been told my little Duck fits the Autistic Spectrum based on the details which I gave!
She also arranged a home visit for tomorrow morning. To meet Duck and I properly and to be able to have some good detail ready so when social services call her she can fight my corner. So out of nowhere, she is dropping everything and coming to visit me on a Saturday morning. I cant thank her enough right now.
And so the battle continues I am now fighting Behaviour support because of the original unprofessionalism of the Muppet, fighting the mental health services for the correct diagnosis of Duck, and fighting Social services against allegations of abuse. Never a dull moment in our house.
Sadly, my situation is not just a one off. There are many families who have a child with special needs, and because of the behaviours of the child they find themselves accused of abuse, despite their best efforts to fight for their child. There is a petition appealing for help from Mark Lever from the nation autistic society to help prevent this. You can sign this petition HERE
I think social services have a very hard job, deciding which child is a victim of abuse and which child is a child with special needs and behavioural issues. I wouldn't want to do their job! I have no issue with them coming and visiting us. I am totally confident they will leave happy. I do have an issue with a certain Muppet who has acted so unprofessionally. I still have to decide what I am going to do next about that. I have enough proof from what she told social services to be able to show it was her. But do I really need to add another battle, or make a current one worse??
One saying I remember, that is hopefully so true. 'There is nothing like an autism diagnosis to stop an abuse case' . Duck has her ADOS (autism assessment) in 3 weeks. I just hope the behaviours I see at home will show through in the ADOS to back up my case. If not, then we will go private. The NHS is failing families like us. It has been for years. The ADOS is not the only way to assess for autism. It is, however the most common one used within the NHS. Girls are much more subtle than boys and often harder to diagnose. Subtle doesn't mean not as autistic either. The ADOS has been used for almost 25 years to diagnose autism. I find it frustrating that my daughter is going to be using such dated medical science that has been proved ineffective many times before.
My triad of impairments post has been delayed, thanks to todays little episode. And it wasn't from Duck!
I had a call this evening from social services. They have received an anonymous phone call about Duck, stating some rather major issues for concern. Without going into detail, I can see why they are taking an interest. Its a shame most of it is fabricated. Its also a shame that one huge detail that social services have is something that I have only ever told one person. The Muppet! Yep, I told her one thing that I have never discussed before. Its nothing confidential, and its nothing I have done wrong. Its to do with my GP and I have called my GP to discuss it. She agreed that I did the right thing and that the evidence will not stand anywhere. She also told me I have done so much work in trying to get help for Duck and she has all the evidence. She also, (thankfully) saw Duck last Wednesday, and was happy with her weight. Social services were told Duck has been dramatically losing weight amongst other things.
I don't mind social coming in. I called them after Muppets visit and told them they were welcome anytime. I work with children and I totally see the importance of child protection. I/we have nothing that we don't want them to see. I am happy for them to ask whatever questions they feel relevant and I agreed to social contacting my GP, my behaviour analyst and attending the multi professional meeting next week and doing a 1-1 home visit next Friday. Looks like I have a fun week ahead.
Then, I call my GP! I clarified information with her and find out she is totally supportive and happy to co-operate and back up my case.
Then I call my behaviour analyst. I decided we needed a chat in more depth! She was fab. She went through Ducks behaviours with me (again) she verified everything I describe fits a child on the Autistic Spectrum. Right this second, I am sweeping PDA to one side......
I have just been told my little Duck fits the Autistic Spectrum based on the details which I gave!
She also arranged a home visit for tomorrow morning. To meet Duck and I properly and to be able to have some good detail ready so when social services call her she can fight my corner. So out of nowhere, she is dropping everything and coming to visit me on a Saturday morning. I cant thank her enough right now.
And so the battle continues I am now fighting Behaviour support because of the original unprofessionalism of the Muppet, fighting the mental health services for the correct diagnosis of Duck, and fighting Social services against allegations of abuse. Never a dull moment in our house.
Sadly, my situation is not just a one off. There are many families who have a child with special needs, and because of the behaviours of the child they find themselves accused of abuse, despite their best efforts to fight for their child. There is a petition appealing for help from Mark Lever from the nation autistic society to help prevent this. You can sign this petition HERE
I think social services have a very hard job, deciding which child is a victim of abuse and which child is a child with special needs and behavioural issues. I wouldn't want to do their job! I have no issue with them coming and visiting us. I am totally confident they will leave happy. I do have an issue with a certain Muppet who has acted so unprofessionally. I still have to decide what I am going to do next about that. I have enough proof from what she told social services to be able to show it was her. But do I really need to add another battle, or make a current one worse??
One saying I remember, that is hopefully so true. 'There is nothing like an autism diagnosis to stop an abuse case' . Duck has her ADOS (autism assessment) in 3 weeks. I just hope the behaviours I see at home will show through in the ADOS to back up my case. If not, then we will go private. The NHS is failing families like us. It has been for years. The ADOS is not the only way to assess for autism. It is, however the most common one used within the NHS. Girls are much more subtle than boys and often harder to diagnose. Subtle doesn't mean not as autistic either. The ADOS has been used for almost 25 years to diagnose autism. I find it frustrating that my daughter is going to be using such dated medical science that has been proved ineffective many times before.
24 Hours of bliss
Ducks good mood stayed for the whole evening. (YEAH!!!)
We did have a few sensitive moments, but basically she was good. I asked her to go and have a bath. The reply was a clear 'No' and after asking nicely a few times, I decided to change my tune. So I said 'That's fine, I will run myself one in half and hour'. Needless to say, some 20 minutes later, Duck asked me to run her a bath. Ok, I can deal with that! I added some fragrances designed to be a relaxing combination...Frankincense, Lemon and Ylang Ylang. I have to admit is smelt lovely. Duck jumped straight in, and played for a bit. She called me to do her hair. (Clearly, this is a very good day!)
I dried her hear for her too and let her play for half and hour then told her to go to bed. She kind of moaned about it, said tonight it was the dragons that she was scared of, but, and I really mean BUT, she went to bed. By herself. She even fell asleep before 9.30. Wow! First time in weeks I have not had to fight with her or sit with her. I totally enjoyed the peaceful episode of Waterloo road, with no interruptions.
The good mood stayed right up until drop off at school. There she put on a nice performance for her SENCO. However, a teacher who she doesn't know was also there and got involved, Duck took a liking to her and the teacher said she would meet Duck in the morning and go to her class with her. Duck liked that idea and apparently is going to go in well tomorrow. I will obviously remind her of that when the time comes!!
This evening, Duck was in a very childish and immature mood. She was constantly following me around, I lit some scented candles, she blew them out. She put her coat on as in the picture and was rocking on the lounge floor for ages. She was clingy and whingey but in a way difficult to describe. She took her medicine, reasonably well. However, she was totally refusing to go to bed. She stood halfway up the stairs telling us that the vampires were coming to get her and she wasn't going to bed. She was tapping on the banisters to wind me up, whilst I was sitting in her room waiting for her to stop going on about the bloody vampires. Then when I told her of for tapping the banister she was deliberately making silly noises with her mouth whilst standing right in front of me to wind me up. The longer we went on with no reaction, the louder she got. I have got quite good at ignoring but she didn't stop, it went on for over 10 minutes, her waiting for a reaction, and getting none. So she stopped. Then those two dreaded words. 'I'm bored'. This is probably the most dreaded words in any PDA household. It often leads to trouble, or even worse, meltdown. The mood progressed to stamping feed, and throwing items of clothing at me. Not to mention the telling of what a bad mother I am for not sorting it out. I clearly said I was not discussing anything with her until she was on her bed, she was currently standing outside her room refusing to go in. So the strop started. She progressed to entering her room and picking up her guitar, strumming loudly shouting 'MUMMY...MUMMY' repeatedly. I still ignored her. Until she sat on her bed, at which point I spoke and said I knew she was bored but it was bed time. Duck got confused and said why was I suddenly speaking to her so I replied she had got on her bed as I requested. I don't think she was impressed, but she did put the guitar down, have a strop because her bedding wasn't 100% smooth and then climb into bed. She asked for music on, which I can just about manage as I am sitting here typing, I have no objection to listening to music, indeed, by the end of track 2, Duck was fast asleep. I think we made sleep before 9.30. That's a good day!
I was looking more into PDA today, and the differences between that and Obsessive Defiance Disorder. In all honesty, I could easily put Duck into the ODD category. She ticks all of the boxes. However, I know a few children with ODD and whilst they all have similar traits and behaviours, Duck differs so much. The main difference between PDA and ODD is the anxiety behind the behaviours. Duck was diagnosed in 2011 with several specific anxieties including Social phobia, separation anxiety and severe generalised anxieties. At the time I was relieved to have a diagnosis, a real problem to work with. But also at the time it didn't quite fit. Lets look at social phobia, she was given this diagnosis because she hated going to school, hated speaking to people she doesn't know, hides behind me, answers questions directly without any exaggeration, hated saying hello or goodbye.
Shortly after a confirmed social phobia, Duck was asked to perform in the church nativity. She was asked to be Mary, a lead role. Duck jumped at the opportunity. She was also asked to perform a solo song. (One of Ducks many talents is singing and all we can do in her current state is hope the screaming she does doesn't damage her voice.) Duck was over the moon. She was meant to have an older child singing the verse, and Duck was to sing the chorus. However, the older child had issues with her microphone, and mid performance, Duck was asked to sing the whole thing solo. Which she did. Perfectly, no problem. Now, take a look at social phobia? It doesn't quite sit right, does it???
Then, lets look at the separation anxiety. Two of the biggest causes of separation issues in children are stress during pregnancy, causing hormone levels to affect the baby and not meeting baby/childs needs (Under 3 years) this means lack of comfort, neglect and lack of bonding amongst other things. Now, anyone who knew Duck back then will tell you she was attached to my hip from birth. She was a real screamer, but that didn't affect the way I/we parented her. She received as much, if not more time than our son did, because she was much more demanding. These are not the only causes of separation, there are more, but non of them fit either. With separation anxiety, the children fear being left by their main carer as they are concerned the carer wont return or will die in their absence. This means that a child with separation issues, will separate badly at nursery, school, friends, parties, with family or basically anywhere. Duck has never had any problem being left at friends. She will attend sleep overs and yes, occasionally something has upset her, but I have never been called to pick her up and she has always made it through the night. Separation issues would cause me to be called as she wouldn't cope for that long with out me. The mental health nurse who assessed Duck in December last year said if Duck had separation issues, I would have been called out many times at stupid hours of the morning. Duck will go to friends, to parties, she sang at a childs karaoke party, again solo and she goes to brownies, usually happily, although there has been an occasional off day where she has been reluctant! So Ducks separation issues lie in just one place. School. I don't believe that gives her a tag of Separation Anxiety/Disorder.
I believe she has severe anxieties, panic attacks and total meltdowns as a result of being unable to meet the demands she is having placed on her. School is a big issue here, the demands at school are way above and beyond the demands of any other area of Ducks life.
ODD children don't suffer from anxiety in quite the way Duck does. Yes, all children get anxious at times, but Duck takes anxiety to extreme levels. Duck does not have ODD. Ducks ability to cooperate is affected by her stress levels at that time. It makes her unpredictable and a simple request of put your shoes on please can one day be met with a happy bouncy 'yes ok' to a huge meltdown which is effectively a panic attack. Any adult who suffers from anxiety will have a feel for Duck. But imagine the anxiety being tenfold that of a normal anxiety issue and mix it with a child who cannot always communicate well, who has a huge amount of hormones affecting things and who cannot control themselves as an adult and you have just about experienced Duck on a bad day.
PDA is commonly misdiagnosed as ODD or Separation Anxiety/Disorder (SD). That's because all the symptoms are there from both conditions. The other thing PDA children have, if you are trained to look very closely is what is called 'The triad of impairments of the Autistic Spectrum'. PDA children are very good at mimicking behaviours, so the triad of impairments takes an experienced trained eye to pick it up. (or a mum who lives with the child and has done her research!).
The triad of impairments are; Impairment of social interaction, communication impairments and flexibility of thought or behaviour. To be diagnosed with any form of the autistic spectrum, a child must meet all of these points. On the surface, Duck does not meet any of these, well, perhaps the inflexibility of thought. However, when you look deeper, she actually hits them all. I will go over this in my next blog. :-)
In the mean time, if you have not signed the petition to get PDA diagnosed, please do so.
You can find it by clicking HERE
We did have a few sensitive moments, but basically she was good. I asked her to go and have a bath. The reply was a clear 'No' and after asking nicely a few times, I decided to change my tune. So I said 'That's fine, I will run myself one in half and hour'. Needless to say, some 20 minutes later, Duck asked me to run her a bath. Ok, I can deal with that! I added some fragrances designed to be a relaxing combination...Frankincense, Lemon and Ylang Ylang. I have to admit is smelt lovely. Duck jumped straight in, and played for a bit. She called me to do her hair. (Clearly, this is a very good day!)
I dried her hear for her too and let her play for half and hour then told her to go to bed. She kind of moaned about it, said tonight it was the dragons that she was scared of, but, and I really mean BUT, she went to bed. By herself. She even fell asleep before 9.30. Wow! First time in weeks I have not had to fight with her or sit with her. I totally enjoyed the peaceful episode of Waterloo road, with no interruptions.
The good mood stayed right up until drop off at school. There she put on a nice performance for her SENCO. However, a teacher who she doesn't know was also there and got involved, Duck took a liking to her and the teacher said she would meet Duck in the morning and go to her class with her. Duck liked that idea and apparently is going to go in well tomorrow. I will obviously remind her of that when the time comes!!
This evening, Duck was in a very childish and immature mood. She was constantly following me around, I lit some scented candles, she blew them out. She put her coat on as in the picture and was rocking on the lounge floor for ages. She was clingy and whingey but in a way difficult to describe. She took her medicine, reasonably well. However, she was totally refusing to go to bed. She stood halfway up the stairs telling us that the vampires were coming to get her and she wasn't going to bed. She was tapping on the banisters to wind me up, whilst I was sitting in her room waiting for her to stop going on about the bloody vampires. Then when I told her of for tapping the banister she was deliberately making silly noises with her mouth whilst standing right in front of me to wind me up. The longer we went on with no reaction, the louder she got. I have got quite good at ignoring but she didn't stop, it went on for over 10 minutes, her waiting for a reaction, and getting none. So she stopped. Then those two dreaded words. 'I'm bored'. This is probably the most dreaded words in any PDA household. It often leads to trouble, or even worse, meltdown. The mood progressed to stamping feed, and throwing items of clothing at me. Not to mention the telling of what a bad mother I am for not sorting it out. I clearly said I was not discussing anything with her until she was on her bed, she was currently standing outside her room refusing to go in. So the strop started. She progressed to entering her room and picking up her guitar, strumming loudly shouting 'MUMMY...MUMMY' repeatedly. I still ignored her. Until she sat on her bed, at which point I spoke and said I knew she was bored but it was bed time. Duck got confused and said why was I suddenly speaking to her so I replied she had got on her bed as I requested. I don't think she was impressed, but she did put the guitar down, have a strop because her bedding wasn't 100% smooth and then climb into bed. She asked for music on, which I can just about manage as I am sitting here typing, I have no objection to listening to music, indeed, by the end of track 2, Duck was fast asleep. I think we made sleep before 9.30. That's a good day!
I was looking more into PDA today, and the differences between that and Obsessive Defiance Disorder. In all honesty, I could easily put Duck into the ODD category. She ticks all of the boxes. However, I know a few children with ODD and whilst they all have similar traits and behaviours, Duck differs so much. The main difference between PDA and ODD is the anxiety behind the behaviours. Duck was diagnosed in 2011 with several specific anxieties including Social phobia, separation anxiety and severe generalised anxieties. At the time I was relieved to have a diagnosis, a real problem to work with. But also at the time it didn't quite fit. Lets look at social phobia, she was given this diagnosis because she hated going to school, hated speaking to people she doesn't know, hides behind me, answers questions directly without any exaggeration, hated saying hello or goodbye.
Shortly after a confirmed social phobia, Duck was asked to perform in the church nativity. She was asked to be Mary, a lead role. Duck jumped at the opportunity. She was also asked to perform a solo song. (One of Ducks many talents is singing and all we can do in her current state is hope the screaming she does doesn't damage her voice.) Duck was over the moon. She was meant to have an older child singing the verse, and Duck was to sing the chorus. However, the older child had issues with her microphone, and mid performance, Duck was asked to sing the whole thing solo. Which she did. Perfectly, no problem. Now, take a look at social phobia? It doesn't quite sit right, does it???
Then, lets look at the separation anxiety. Two of the biggest causes of separation issues in children are stress during pregnancy, causing hormone levels to affect the baby and not meeting baby/childs needs (Under 3 years) this means lack of comfort, neglect and lack of bonding amongst other things. Now, anyone who knew Duck back then will tell you she was attached to my hip from birth. She was a real screamer, but that didn't affect the way I/we parented her. She received as much, if not more time than our son did, because she was much more demanding. These are not the only causes of separation, there are more, but non of them fit either. With separation anxiety, the children fear being left by their main carer as they are concerned the carer wont return or will die in their absence. This means that a child with separation issues, will separate badly at nursery, school, friends, parties, with family or basically anywhere. Duck has never had any problem being left at friends. She will attend sleep overs and yes, occasionally something has upset her, but I have never been called to pick her up and she has always made it through the night. Separation issues would cause me to be called as she wouldn't cope for that long with out me. The mental health nurse who assessed Duck in December last year said if Duck had separation issues, I would have been called out many times at stupid hours of the morning. Duck will go to friends, to parties, she sang at a childs karaoke party, again solo and she goes to brownies, usually happily, although there has been an occasional off day where she has been reluctant! So Ducks separation issues lie in just one place. School. I don't believe that gives her a tag of Separation Anxiety/Disorder.
I believe she has severe anxieties, panic attacks and total meltdowns as a result of being unable to meet the demands she is having placed on her. School is a big issue here, the demands at school are way above and beyond the demands of any other area of Ducks life.
ODD children don't suffer from anxiety in quite the way Duck does. Yes, all children get anxious at times, but Duck takes anxiety to extreme levels. Duck does not have ODD. Ducks ability to cooperate is affected by her stress levels at that time. It makes her unpredictable and a simple request of put your shoes on please can one day be met with a happy bouncy 'yes ok' to a huge meltdown which is effectively a panic attack. Any adult who suffers from anxiety will have a feel for Duck. But imagine the anxiety being tenfold that of a normal anxiety issue and mix it with a child who cannot always communicate well, who has a huge amount of hormones affecting things and who cannot control themselves as an adult and you have just about experienced Duck on a bad day.
PDA is commonly misdiagnosed as ODD or Separation Anxiety/Disorder (SD). That's because all the symptoms are there from both conditions. The other thing PDA children have, if you are trained to look very closely is what is called 'The triad of impairments of the Autistic Spectrum'. PDA children are very good at mimicking behaviours, so the triad of impairments takes an experienced trained eye to pick it up. (or a mum who lives with the child and has done her research!).
The triad of impairments are; Impairment of social interaction, communication impairments and flexibility of thought or behaviour. To be diagnosed with any form of the autistic spectrum, a child must meet all of these points. On the surface, Duck does not meet any of these, well, perhaps the inflexibility of thought. However, when you look deeper, she actually hits them all. I will go over this in my next blog. :-)
In the mean time, if you have not signed the petition to get PDA diagnosed, please do so.
You can find it by clicking HERE
Chest pains.
What a couple of days. Duck is definitely not a happy duck at the minute. Sadly, we get to feel the unhappiness at home. I had a meeting at the school, they needed to discuss their handling of Duck when I arrive to drop her off. It was very basic, however, as they said, they do not need much because duck never plays up for them. Once I have gone she settles down and they can guide her with an arm around her shoulder. However, they do understand the situation is different for me. They have seen it and they are supportive, as much as they can be.
Duck was still complaining of being ill, so I called school at lunch time to see if she needed medicine, and yes, she had been complaining to them again too. Off we trot to top up her dose. Again. Bed time was, well, terrible. In a fight to refuse, Duck pushed me and I bashed my arm on the banister, and hurt it, not to mention, in tripping, I trod on ducks leg, and very nearly hurt that too. She is getting harder and harder at bed time, I hope we will get some decent medicine soon, but we have to wait for our referral to get that. Eventually, I got Duck to sleep. It took until 945. But asleep she was. :-)
School the next day was bad, really bad. Duck decided she was too ill to do PE and asked me to write a note saying she couldn't do it. I refused, Duck went into violence, she was hitting me a lot (and husband) and spend an hour and a half flitting between begging me to write it and hitting me for refusing. She even tried to write her own note, but realised it wasn't going to work. Battle lines drawn, Duck wouldn't cooperate at all, she wouldn't get into the car, and she wouldn't put her seatbelt on. Leading her again, like handling a young child, I took her to the car and securely fastened her in.
On arrival at school, Ducks mood didn't improve. She refused to get out of the car, and when she did, she tripped over and dropped her earmuffs. She then became aggressive as her earmuffs were now wet. She started hitting me (again) and then threw her earmuffs at me. As she did so, I let go of her coat, which meant she was able to run away. She didn't go far, and after a short wait, she returned to the car to get her earmuffs, again hitting me when I tried to help. She was screaming at me to let go of her coat, but I was not about to let her run off twice! Senco appeared, along with another member of staff from school. We got her into the office and I managed to escape. I told senco briefly that Duck had not had a good morning.
Again, Duck came home complaining of pain in her chest, said it had been hurting all day, and I obviously didn't care! I got her an appointment at the GP for later that evening. I was sure there was nothing wrong, however, I am not a GP and I decided she needed a real check up, just for peace of my mind, and for Ducks too. GP is lovely, and has a good understanding of Duck. She was happy to give Duck a full examination, including checking her chest, heart, lungs, tonsils and ears. Needless to say she found nothing wrong. She did suggest Duck may have pulled a muscle in her chest. I felt this was to justify our visit in Ducks mind. Duck was not happy she really thought she was ill. I think her pain is caused by anxiety. I think the pain is real, but nothing we do will help.
We expected a meltdown over the GP visit, but Duck seemed to cope well. She even seemed happier, like the 'all clear' had lifted a weight off her mind. Duck also ate (well drank) a lot of food this evening. She had 2 nutrition ice cream smoothies that I make, which contain almost 350 calories each. Then she had some other bits, a chocolate milkshake, some pate and 2 'pots of joy'. I think it was one of her best days for eating. We couldn't tempt her with pizza that we were eating. Duck is refusing to have a bath tonight, and she is already saying she wont go to bed. Battle lines drawn once again, let battle commence...
The PDA army are plotting behind the scenes. We are aiming for a big hit of a PDA awareness day in February, we have lots planned, and even more to plan. We are going to get as much publicity as we can and hope to help many, many fold in our position along with raising the numbers on the petition. We are a long way off our target. We plan to rectify that. You can help, you can fight with the army. Please sign the petition. You can find it HERE.
Duck was still complaining of being ill, so I called school at lunch time to see if she needed medicine, and yes, she had been complaining to them again too. Off we trot to top up her dose. Again. Bed time was, well, terrible. In a fight to refuse, Duck pushed me and I bashed my arm on the banister, and hurt it, not to mention, in tripping, I trod on ducks leg, and very nearly hurt that too. She is getting harder and harder at bed time, I hope we will get some decent medicine soon, but we have to wait for our referral to get that. Eventually, I got Duck to sleep. It took until 945. But asleep she was. :-)
School the next day was bad, really bad. Duck decided she was too ill to do PE and asked me to write a note saying she couldn't do it. I refused, Duck went into violence, she was hitting me a lot (and husband) and spend an hour and a half flitting between begging me to write it and hitting me for refusing. She even tried to write her own note, but realised it wasn't going to work. Battle lines drawn, Duck wouldn't cooperate at all, she wouldn't get into the car, and she wouldn't put her seatbelt on. Leading her again, like handling a young child, I took her to the car and securely fastened her in.
On arrival at school, Ducks mood didn't improve. She refused to get out of the car, and when she did, she tripped over and dropped her earmuffs. She then became aggressive as her earmuffs were now wet. She started hitting me (again) and then threw her earmuffs at me. As she did so, I let go of her coat, which meant she was able to run away. She didn't go far, and after a short wait, she returned to the car to get her earmuffs, again hitting me when I tried to help. She was screaming at me to let go of her coat, but I was not about to let her run off twice! Senco appeared, along with another member of staff from school. We got her into the office and I managed to escape. I told senco briefly that Duck had not had a good morning.
Again, Duck came home complaining of pain in her chest, said it had been hurting all day, and I obviously didn't care! I got her an appointment at the GP for later that evening. I was sure there was nothing wrong, however, I am not a GP and I decided she needed a real check up, just for peace of my mind, and for Ducks too. GP is lovely, and has a good understanding of Duck. She was happy to give Duck a full examination, including checking her chest, heart, lungs, tonsils and ears. Needless to say she found nothing wrong. She did suggest Duck may have pulled a muscle in her chest. I felt this was to justify our visit in Ducks mind. Duck was not happy she really thought she was ill. I think her pain is caused by anxiety. I think the pain is real, but nothing we do will help.
We expected a meltdown over the GP visit, but Duck seemed to cope well. She even seemed happier, like the 'all clear' had lifted a weight off her mind. Duck also ate (well drank) a lot of food this evening. She had 2 nutrition ice cream smoothies that I make, which contain almost 350 calories each. Then she had some other bits, a chocolate milkshake, some pate and 2 'pots of joy'. I think it was one of her best days for eating. We couldn't tempt her with pizza that we were eating. Duck is refusing to have a bath tonight, and she is already saying she wont go to bed. Battle lines drawn once again, let battle commence...
The PDA army are plotting behind the scenes. We are aiming for a big hit of a PDA awareness day in February, we have lots planned, and even more to plan. We are going to get as much publicity as we can and hope to help many, many fold in our position along with raising the numbers on the petition. We are a long way off our target. We plan to rectify that. You can help, you can fight with the army. Please sign the petition. You can find it HERE.
Welcome to Holland (PDA autism)
PDA children go through phrases, well, at least mine does. She has been so good over the Christmas holidays with so few issues that I was almost having doubts about her actually having any form of autism a lot of the time. Then, the phrase is over and autism hits you like a sledgehammer. PDA more like a swinging ball straight to the stomach, sweeping you off your feet. Duck has been terrible again today. She went into school reasonably well, but kept complaining about feeling ill. I went in and gave her a top up dose of medicine, and got the normal concerned teacher who doesn't know anything much about Duck telling me how worried she was to hear Duck isn't eating. One day I will probably lose my self control and let the sarcasm take over. You know, the old 'Oh really, I never knew children actually needed food.' kind of thing. I had been in school for half an hour first thing that day discussing with the SENCO and telling her Duck had tried a couple of different foods and that I had considered that good. We also talked about the GP and a new prescription of her medicine drinks so as far as I was concerned, the school were upto date.
Duck was demanding this evening, wanting me to do this, me to do that, me to do everything for her. I try to balance. I need to spend time with her on a one to one, but I cant let her be overly controlling. So, I agreed to a board game with her, which I lost really badly at, then we played an experiment from one of her Christmas presents where you set a mini rocket off by mixing bicarbonate of soda and vinegar. Then I needed a shower, and wanted an early night. Needless to say, Duck was not co-operating. She still claims she doesn't feel well and has this amazingly awful cough. I say that sarcastically, the cough is amazingly well put on and only started around the time we were trying to get ready for bed! Duck sat in the kitchen refusing to move when husband said bed time. I was upstairs getting dried and ready for bed. Husband said ok, and walked out, turning all but the kitchen light off and leaving her alone in the kitchen. We sat in our room wondering how long it would take before Duck appeared. Less than 5 minutes it took before she appeared at our door, still with computer in hand. She sat on our bed and refused to go, despite us asking nicely several times. I got out of bed and reached over to turn the laptop off which sent Duck into a minor meltdown. The meltdown escalated because we wouldn't let her sleep in our bed. Eventually I carried her out of our room and shut the door. This was followed by almost an hour of screaming, banging and shouting outside our room, about how scared, she is, how she needs mummy and all sorts. Duck isn't scared. She doesn't need mummy. She needs control. Being shut out of our room was a total loss of control. About half way through, she agreed she would go to her room and I would go and sit with her for a while, however, we got halfway there and she stopped and refused to move any further, so I went straight back to my room and we began again. Half and hour later, Duck agreed, albeit reluctantly, that daddy could take her to her room. He went with her, and again half way there she kicked off refusing and shouting. Husband is bigger and stronger so he just picked her up and put her in her room. All I could hear by then is screams of get off me, you are hurting me. He wasn't, she was just trying to control him too. Once she had calmed in her room, some 20 minutes later, she asked if mummy could come and tuck her in, which obviously I did. We had said so many times she needed to calm down and be quiet before I would go, but she refuses to listen and let us control the situation. When she loses control things get worse and she ends up in a meltdown. The best thing about tonights meltdown, is I shut the door, so all the punching and kicking was even more ineffective than normal. As usual, I am sitting in her room writing my blog whilst she goes to sleep. Apparently, I am also on look out duty for that giant that is part of the amazing imagination of a PDA child.
I guess we could call last night a 'Good night'! Despite all the kicking and screaming, Duck was still asleep by 9.30 and I managed a decent night sleep. On getting up this morning, all I could think of was the film 'Ground Hog Day'. Life with Duck is feeling very much that was. Every morning, treading on egg shells, hoping she gets ready for school without an argument, hoping she doesn't wind her brother up any more than normal for 2 little people, hoping that she gets in the car nicely for me. Normally, she does, its only very occasionally I have to hunt her down and rummage through wardrobes to find her. Then hoping she will go in well at the other end, never knowing quite which way the drop off will go. Then when I pick her up, its egg shells again, hoping no body has upset her and she had a good day. She is usually good whilst I am working, but the minute I finish is when she becomes difficult. We spend the evening with her complaining about everything that's not gone right then refusal to co operate with anything I try finally followed by bed time refusal. Most definitely predictable, and most definitely Ground Hog Day re-visited!
Duck asked if she could take the science kit we played with last night to school as they had science. I said it was a great idea. Mainly because I thought it would help her go in nicely, but also because the words 'No that's not a good idea' bring so much stress that I often decide the teacher can make that choice! I let her take it in, and the teacher will either use it or say no. I think I had better warn them its in her bag because I don't want her exploding a rocket in the middle of the playground.
Duck got up this morning and wrote me a note saying she had lost her voice and couldn't talk. I said yes, I wasn't surprised. I couldn't find much sympathy, its kind of self inflicted. It was also untrue. She managed really well for an hour or so, then suddenly something went wrong. Out of nowhere came 'MUMMYYYYYYYYYYYYYYY'..and the voice had returned. Nothing short of miraculous....
I found this yesterday, its called Welcome to Holland.
Duck was demanding this evening, wanting me to do this, me to do that, me to do everything for her. I try to balance. I need to spend time with her on a one to one, but I cant let her be overly controlling. So, I agreed to a board game with her, which I lost really badly at, then we played an experiment from one of her Christmas presents where you set a mini rocket off by mixing bicarbonate of soda and vinegar. Then I needed a shower, and wanted an early night. Needless to say, Duck was not co-operating. She still claims she doesn't feel well and has this amazingly awful cough. I say that sarcastically, the cough is amazingly well put on and only started around the time we were trying to get ready for bed! Duck sat in the kitchen refusing to move when husband said bed time. I was upstairs getting dried and ready for bed. Husband said ok, and walked out, turning all but the kitchen light off and leaving her alone in the kitchen. We sat in our room wondering how long it would take before Duck appeared. Less than 5 minutes it took before she appeared at our door, still with computer in hand. She sat on our bed and refused to go, despite us asking nicely several times. I got out of bed and reached over to turn the laptop off which sent Duck into a minor meltdown. The meltdown escalated because we wouldn't let her sleep in our bed. Eventually I carried her out of our room and shut the door. This was followed by almost an hour of screaming, banging and shouting outside our room, about how scared, she is, how she needs mummy and all sorts. Duck isn't scared. She doesn't need mummy. She needs control. Being shut out of our room was a total loss of control. About half way through, she agreed she would go to her room and I would go and sit with her for a while, however, we got halfway there and she stopped and refused to move any further, so I went straight back to my room and we began again. Half and hour later, Duck agreed, albeit reluctantly, that daddy could take her to her room. He went with her, and again half way there she kicked off refusing and shouting. Husband is bigger and stronger so he just picked her up and put her in her room. All I could hear by then is screams of get off me, you are hurting me. He wasn't, she was just trying to control him too. Once she had calmed in her room, some 20 minutes later, she asked if mummy could come and tuck her in, which obviously I did. We had said so many times she needed to calm down and be quiet before I would go, but she refuses to listen and let us control the situation. When she loses control things get worse and she ends up in a meltdown. The best thing about tonights meltdown, is I shut the door, so all the punching and kicking was even more ineffective than normal. As usual, I am sitting in her room writing my blog whilst she goes to sleep. Apparently, I am also on look out duty for that giant that is part of the amazing imagination of a PDA child.
I guess we could call last night a 'Good night'! Despite all the kicking and screaming, Duck was still asleep by 9.30 and I managed a decent night sleep. On getting up this morning, all I could think of was the film 'Ground Hog Day'. Life with Duck is feeling very much that was. Every morning, treading on egg shells, hoping she gets ready for school without an argument, hoping she doesn't wind her brother up any more than normal for 2 little people, hoping that she gets in the car nicely for me. Normally, she does, its only very occasionally I have to hunt her down and rummage through wardrobes to find her. Then hoping she will go in well at the other end, never knowing quite which way the drop off will go. Then when I pick her up, its egg shells again, hoping no body has upset her and she had a good day. She is usually good whilst I am working, but the minute I finish is when she becomes difficult. We spend the evening with her complaining about everything that's not gone right then refusal to co operate with anything I try finally followed by bed time refusal. Most definitely predictable, and most definitely Ground Hog Day re-visited!
Duck asked if she could take the science kit we played with last night to school as they had science. I said it was a great idea. Mainly because I thought it would help her go in nicely, but also because the words 'No that's not a good idea' bring so much stress that I often decide the teacher can make that choice! I let her take it in, and the teacher will either use it or say no. I think I had better warn them its in her bag because I don't want her exploding a rocket in the middle of the playground.
Duck got up this morning and wrote me a note saying she had lost her voice and couldn't talk. I said yes, I wasn't surprised. I couldn't find much sympathy, its kind of self inflicted. It was also untrue. She managed really well for an hour or so, then suddenly something went wrong. Out of nowhere came 'MUMMYYYYYYYYYYYYYYY'..and the voice had returned. Nothing short of miraculous....
I found this yesterday, its called Welcome to Holland.
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - t...o Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - t...o Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I think its taken me most of the last 9 years to realise that I am not in Italy, I suspected it for a while, but recently I have realised, that I, like many others are definitely in Holland.
The only difference to my kind of Holland is that I am having to fight to get the Health Services to agree I am in Holland. I am fighting like hundreds of others fighting for PDA to get recognised.
Please help us by signing the petition. The link can be found HERE
Difficult weekend
Poor Duck, she got up Saturday morning poorly. She was complaining of tummy ache, headache, sort throat and dizziness (again) only this time she also added chest pains and stabbing pain when she coughed. Still I was not totally convinced that she wasn't well, however when her temperature read 39.6 C I decided it was for a GP to decide, not me. So I spent the whole morning sitting in waiting for them to ring. They offered an appointment for 12.00 which was perfect, so we took it and got her checked out. By the time we got there, her temperature was normal, her chest may have been painful, but there was no sign of infection so the Dr advised lots of fluid and rest for the weekend, probably a virus. Duck was not impressed. She was expecting Dr to make the pain go away, or at least give her a disgusting medicine that she would argue with me over taking. She spent the next hour kicking off, complaining that it hurts more than it did before and why wont I take the pain away? If only it was that simple. I did try telling her that she got ill more because she didn't eat properly and I reminded her that she had promised her SENCO she would eat some solids this weekend but its not looking good. She spent most of the day chilling in front of the TV but random, panicked 'mummy make it stop hurting's arose from the room. Shortly followed by 'Oh just forget it, you are not going to do anything because you don't care!'. Just to be clear, she was up to date on Calpol and was refusing nurofen, so there was physically nothing I could do. I did try explaining that, not very successfully I am sure.
All in all, I got very little break from the complaining Saturday. Husband got in from work at 3, so I went out for a very short and very slow dog walk. I had to be home by 3.45 as he was due out again at 4 to do singing practice for church Sunday. Then he got in at 5 and I quickly bunked out to Tesco to do the weekly shopping. It was heavenly quiet! Actually, she shop was quite busy, but not having duck with me made it quiet! She really has been living up to her name...constant nagging, demanding I make it go away, make her feel well, call the dr again and make him give her something.
All in all, I got very little break from the complaining Saturday. Husband got in from work at 3, so I went out for a very short and very slow dog walk. I had to be home by 3.45 as he was due out again at 4 to do singing practice for church Sunday. Then he got in at 5 and I quickly bunked out to Tesco to do the weekly shopping. It was heavenly quiet! Actually, she shop was quite busy, but not having duck with me made it quiet! She really has been living up to her name...constant nagging, demanding I make it go away, make her feel well, call the dr again and make him give her something.
I brought a few things I thought Duck might eat..real food! I brought some smooth pate, some cheese/chocolate spread, some chocolate buttons yoghurts and some fruit stars which she used to love. I put a little of each on a plate and had HUGE dramatics over them. 'I cant, I am too scared, you don't know how scared I am, I might choke, I have not eaten for ages, its too hard...'. Eventually I persuaded her to go off to another room, watch TV by herself and just have a lick of everything, and if she liked it, to try more, if not then not to bother. I sent her off with a drink of fresh juice (My pathetic attempt at one of five a day!). She re appeared about 20 minutes later, and I was a little disappointed, she had eaten the pate but that was about all. Still, pate was better than no pate, it contains a lot of nutrients, and calories, it was about 2 teaspoons worth and she ate it all. She didn't even try the rest, which surprised me, because normally she would eat anything chocolate first then maybe try anything else. Its a first step though. We have moved on from liquid only to liquid and pate. Slow road to recovery has begun. It will be slow, very slow. I can say that with confidence as I have done it twice before. I think Duck started feeling better, she suddenly became more demanding. 'Play this game, help me cook this meal' then the stomping off when we were not cooking again until tomorrow and the game didn't go her way....then husband put a film on. I offered duck another cuddle on the sofa to watch but Duck obviously didn't want to watch the film because the relentless complaining about pain began again. Constant. I left the room, the complaining followed me. I started the laundry amidst realms of 'make it go away, it hurts, you don't love me because you are not making me better. What day you do mummy? MAKE IT GO AWAY!!' Honestly, if you heard her you would think I was not trying. However, we had been taking calpol, even to go and been offering nurofen all day. Every mention of nurofen was met with an angry comment about how I know that stuff is disgusting. Honestly, she was nowhere near as ill as she would have me believe. Let's face it, if you were really ill, would you manage to follow someone round most of the day complaining? I think not! I managed to stay calm and explained the only thing mummy had not done was given her nurofen. Eventually she yelled at me that she would take the nurofen because I was making her!?!?!? Then after a dramatic 'I feel sick now', she stomped off to watch TV upstairs. I found her tucked up in my sleeping bag! I suggested bed time. Defiantly I was told she was staying up for her 10 pm and midnight medicine. I got her a dose of calpol and told her she could take when the program finished. The only thanks I got was a grumpy 'what about the other one?' I told her she wouldn't need it. I left her with it. Clearly most of her behavior was aimed at me so I told her she could stay in the TV room for the night, left her with a drink and 5 ml of medicine and went to bed!
I wasn't planning on going to church, although husband was singing. so I decided to treat Duck and son to a trip to the cinema. I should have know better. Duck was feeling much better, however she was in a totally awful mood. This meant she didn't want to go to the cinema because mummy suggested it. She didnt want to see the film because I had chosen it. Infact, Sunday was predicted to be bad day! We did get to the cinema, and Duck sat reasonably well through it. She complained several times about it being boring, however, at the end she raved about it. Sometimes it feel like I just cant please her. When we got home, she asked to go on the pc, but I said no as I wanted to use it. This led to a total meltdown. Over and hours worth of screaming and shouting, stamping on my feet, pushing and hitting me. She never got the PC. Infact, she lost any use for the whole day, much to her disgust. She only calmed down after telling me she was going to call the police and get herself a new, nicer mummy. To which I passed the phone and asked if she knew the number! Duck was clearly trying to shock and upset me to get a reaction as she had had very little until then. She didn't get the response she wanted and started saying she was sorry and didn't mean it. I suggested she went to her room to calm down, which she did. Sadly, she reappeared 10 minutes later with maths homework, which just added more complications to the mood...We had friends due over for the afternoon/evening, I was hoping she would calm down before they arrived! Friends arrived but Ducks mood didn't change much. She was grumpy and stroppy all evening, leading onto a full meltdown around bed time. It took 1.5 hours to get her to sleep, her Tablet was taken away (more because I was worried she would break it in the rage) and she was horrific. Friends who were here have been in our lives since way before Duck was born, but they live in Oxford, so we don't see them that often. However, Duck is not afraid to show her true colours to them and they have seen much more of Ducks behaviour issues than many of our closest friends. Duck gave them an amazing performance at bed time. She had a huge violent meltdown, but friends even noticed how 'In control' she was even though she was also 'out of control'. They noticed how she was managing to flip from total rage to calm and back in an instant and how the true Jeckyl and Hyde character was showing through.
I tried to get Duck to bed, husband came and gave me a break, he tried to get Duck to bed, Duck didn't want daddy, she was screaming, 'I want mummy, daddy is beating me up, daddy wont let me out of my room' amongst other things. Daddy was stood outside the door waiting for her to be calm enough to enter. Eventually, our friend went up and sat in Ducks room, by the door, almost totally ignoring her but dropping casually in to the pauses ' Mummy will come and tuck you in when you have calmed down and got into bed'. Duck carried on raging, lifting her bed and dropping it on the floor (max noise = max effect), she spent ages rummaging around her room and then found a key which opened the windows. She decided to open it and tell friend she was going to jump out. Friend ignored her, Duck shut window! Eventually, Duck sat, very grumpily on her bed and stopped screaming. So I went up to tuck her in. She immediately started having a go at me for leaving her with daddy and friend so I said its just tough. She got cross and shouted at me to go away. So I did. That was the last I saw of Duck (awake anyway) for the weekend. I was thankful. She was asleep, and calm. All we can do is hope that tomorrow, we have a Happy Duck.
All in all, the weekend was horrid. I think I cant wait to go back to work in the morning, for a break!
For anyone new, we think our Duck has a form of autism called PDA. Its not well recognised and the NHS do not often diagnose is despite it being recognised for over 30 years. We are fighting to change this. Please help, Please sign and share the petition. To sign, please click HERE
For more information about PDA, please click HERE
Happy Monday, Everyone!
I tried to get Duck to bed, husband came and gave me a break, he tried to get Duck to bed, Duck didn't want daddy, she was screaming, 'I want mummy, daddy is beating me up, daddy wont let me out of my room' amongst other things. Daddy was stood outside the door waiting for her to be calm enough to enter. Eventually, our friend went up and sat in Ducks room, by the door, almost totally ignoring her but dropping casually in to the pauses ' Mummy will come and tuck you in when you have calmed down and got into bed'. Duck carried on raging, lifting her bed and dropping it on the floor (max noise = max effect), she spent ages rummaging around her room and then found a key which opened the windows. She decided to open it and tell friend she was going to jump out. Friend ignored her, Duck shut window! Eventually, Duck sat, very grumpily on her bed and stopped screaming. So I went up to tuck her in. She immediately started having a go at me for leaving her with daddy and friend so I said its just tough. She got cross and shouted at me to go away. So I did. That was the last I saw of Duck (awake anyway) for the weekend. I was thankful. She was asleep, and calm. All we can do is hope that tomorrow, we have a Happy Duck.
All in all, the weekend was horrid. I think I cant wait to go back to work in the morning, for a break!
For anyone new, we think our Duck has a form of autism called PDA. Its not well recognised and the NHS do not often diagnose is despite it being recognised for over 30 years. We are fighting to change this. Please help, Please sign and share the petition. To sign, please click HERE
For more information about PDA, please click HERE
Happy Monday, Everyone!
Autism Daily Newscast
Wow, its been a busy day, to say the least. It started with Duck not wanting to go to school. Today her tummy hurt, her head hurt, her throat hurt and she felt dizzy! Calpol administered and off to school we went. Not quite kicking and screaming, but not exactly skipping in either!
I had an unwelcome call from the lady at behavior support today. I have to be honest, I think I over reacted but I also think she will refrain from calling me again!
I also had a total of 4 calls from the school today. I am beginning to think my numbers are on speed dial, but that's not a complaint. Communication is essential for Duck at the minute. First call was about a meeting, second was about deciding if she really was ill, third was about her eating (or lack of) and fourth was asking me to pick her up as she was going downhill.
So Duck came home I did agree, she didn't look well by that point and she didn't feel or look great for the rest of the day. So to top everything off, I now have a poorly Duck. Thank goodness its the weekend and we can chill for a couple of days!
Then at some point in the afternoon, I got a message saying my Autism Daily Newscast was live. I was really pleased with the draft and even more so when I saw the official version. Here is the link...
http://www.autismdailynewscast.com/parent-carolyn-weighill-talks-about-pathological-demand-avoidance-pda/6222/joworgan/?utm_source=rss&utm_medium=rss&utm_campaign=parent-carolyn-weighill-talks-about-pathological-demand-avoidance-pda.
http://www.autismdailynewscast.com/parent-carolyn-weighill-talks-about-pathological-demand-avoidance-pda/6222/joworgan/?utm_source=rss&utm_medium=rss&utm_campaign=parent-carolyn-weighill-talks-about-pathological-demand-avoidance-pda.
Duck doesn't want to go to bed. Nothing new! I decided she could stay up a bit later as she had been dozing some of the afternoon. I have to admit I much prefer her in bed! I have got emails to write, one to Anna Kennedy OBE who has asked me to contact her about PDA. I am hoping to drum up support for our petition as will as get some sensible advice for myself and others in my position. Then I have to email TAC..a special needs support service of some kind. I am hoping they will also promote the petition and get us some support.
Then I need to sort out shopping (we have almost no food) and spend some quality time with my lovely children. I love weekends.
Enough writing for today. Don't forget to sign and share the petition
http://epetitions.direct.gov.uk/petitions/57807
http://epetitions.direct.gov.uk/petitions/57807
Have a good weekend everyone!
Muppets
So in the world of PDA autism, there are some professionals who earn the well intended name of 'Muppet'. There is a Muppet who has been involved with myself and Duck. Its the same Muppet who I previously mentioned who wont be involved with us again. I was reminded of her visit today when the post brought me a letter, inviting me to a course on Thursday mornings. One of the complaints I put in about this Muppet was how she put words into my mouth and wouldn't listen to me. If nothing else, it has given me proof of that fact. I specifically told her I would be unable to attend an course during the day time on a Thursday. In fact, she actually offered me a Monday evening, which I had agreed to. Yet the letter today had no mention of a Monday evening option. It just said if I had not confirmed by a certain date then I wouldn't be able to join the Thursday daytime course. Now, bearing in mind I have made it quiet clear to this Muppets manager that I have no intention of joining and course where I will be meeting Muppet, I am not even sure if I should bother replying. (I have no objection to partaking the course on how to parent my child, however, may I refer you to my previous post 'School and PDA'. PDA isn't like a 'normal' child. Nor is it like an autistic child. All the parenting techniques don't work. Its been proved, by specialists, its not my imagination! Sadly, because I have no diagnosis, everybody thinks Duck can be fixed using 'Positive parenting' and I have no doubt that me saying 'It doesn't work' will be frowned upon as negativity.)
What I need is a diagnosis, so we can schedule my parenting techniques to match Ducks behaviour and responses.
Meanwhile, I am feeling slightly under the strain. I have Duck with severe behavioural difficulties, I have a school who are trying to help, behaviour support who are trying, but a Muppet within their team, a press release ready and due out soon (which I will post the link to as soon as it is released), my MP contacting me, 4 separate referrals from camhs to deal with, a multi professional meeting to fit in with the school and on top of that I work full time and I am suffering from sciatica due to a long standing back injury. Its a lot to deal with. Probably too much, in all honesty, half of me wants to tell everyone 'Stop the ride I want to get off!' but I have no choice. I have to keep fighting for Duck and other children like her. Thanks to the amazing team in the facebook groups I am in, I don't feel like I am fighting this alone. There are many of us in the global group. https://www.facebook.com/groups/pdasupport/
and in the UK group
https://www.facebook.com/groups/pdauk/
and many more on twitter and various other places. More and more people are finding out about PDA and more people are seeing it in their child. The NHS really need to gather a team of real experts to help. They need to know what we are dealing with. They need support in place for our children with PDA right through to adults. These children will be our next adult generation. If they do not start off well, where will it leave us?
I had a normal morning with Duck. She complained of tummy ache, headache, leg ache and basically every other problem she could think of. I was hoping, well praying for a bad separation because she was supposed to be being watched by behaviour support. However, firstly Duck did well and only complained a little at school and secondly, the lady observing wasn't there! I get to school early to avoid all the 'normal' children when I can, perhaps today was a little too early! I do know the lady got to school and spent some time with Duck. I also know Ducks amazing imagination could mean she told lady anything, anything at all!!! Duck came home happy. Tomorrow is their class treat day and she can take a game in to play. She thrives on things being different. (Typical autism thrive on routine, PDA children thrive on change) So tomorrow is exciting. She will almost certainly go in well tomorrow. The demands will be reduced, she only has the morning for lessons. The rest of the day will be reasonably demand free. Hopefully that will mean she finishes the week on a good note. :-)
Duck hasn't mentioned her visit from behaviour support. I don't know if the lady spoke to her, or just observed her. I do know she was in the class, certainly for part of the morning. I don't want to pry, because if she didn't know she was being watched it will upset her if I mention it. But I am dying to know. The evening started off well for Duck and us. Brother decided to play on minecraft, and Duck asked to join in. Son appeared, they actually played together without fighting. (Must write that down, it doesn't happen often at the minute). Duck has not eaten enough today. She is really tired and very unenthusiastic about everything. I am glad its Friday tomorrow, I have time to feed her up a bit over the weekend. She needs fuel. She has been drinking her milkshake at school, which helps, but its not enough. I have given her a hot chocolate, made with nutrition mix, hopefully she will feel better by the morning.
I found myself reading this on one of the facebook pages tonight, I probably shouldn't print it, but I have deleted names and swear words. :-)
''My heart is breaking right now. My friend is on her knees and I can't do anything to help her and her son. I'm trying but I keep hitting walls. I don't know how you all do it. I've just gotten off the phone to her and I'm close to tears. All I could hear over the phone was C hitting and punching her and calling her every name under the sun. It was horrific to listen to but I can't imagine what it's like from her position. No one will help! I've called her MP, CAMHS fobbed me off and said that because I wasn't Cs mum that I wasn't able to leave a message for them! I tried to explain that I wanted her to call Louise and not me and finally they agreed they would. I've just called Social Services because I'm running out of opinions fast! I can see this lovely little boy disappearing in front of my eyes and a wonderful mum being pushed to breaking point and no one will help! What else can I do? Why won't these so called services shut up and listen?! I wish there was more I could do. It breaks my heart to see my friend suffering like this. ''
Another case of a mother on her knees because nobody believes her or helps her. I found myself writing to Downing Street, for what little it will do. Duck isn't as bad as this little boy, but still the traits are there. It could so easily be me this person is talking about. It could be anyone of you with your child. Nobody knows what causes PDA or autism of any form. But people really need to start understanding it and diagnosing correctly. PDA is not poor parenting. Its autism. How many times does this need to be said?
Petition to get PDA recognised. Lets help these people...
http://epetitions.direct.gov.uk/petitions/57807
What I need is a diagnosis, so we can schedule my parenting techniques to match Ducks behaviour and responses.
Meanwhile, I am feeling slightly under the strain. I have Duck with severe behavioural difficulties, I have a school who are trying to help, behaviour support who are trying, but a Muppet within their team, a press release ready and due out soon (which I will post the link to as soon as it is released), my MP contacting me, 4 separate referrals from camhs to deal with, a multi professional meeting to fit in with the school and on top of that I work full time and I am suffering from sciatica due to a long standing back injury. Its a lot to deal with. Probably too much, in all honesty, half of me wants to tell everyone 'Stop the ride I want to get off!' but I have no choice. I have to keep fighting for Duck and other children like her. Thanks to the amazing team in the facebook groups I am in, I don't feel like I am fighting this alone. There are many of us in the global group. https://www.facebook.com/groups/pdasupport/
and in the UK group
https://www.facebook.com/groups/pdauk/
and many more on twitter and various other places. More and more people are finding out about PDA and more people are seeing it in their child. The NHS really need to gather a team of real experts to help. They need to know what we are dealing with. They need support in place for our children with PDA right through to adults. These children will be our next adult generation. If they do not start off well, where will it leave us?
I had a normal morning with Duck. She complained of tummy ache, headache, leg ache and basically every other problem she could think of. I was hoping, well praying for a bad separation because she was supposed to be being watched by behaviour support. However, firstly Duck did well and only complained a little at school and secondly, the lady observing wasn't there! I get to school early to avoid all the 'normal' children when I can, perhaps today was a little too early! I do know the lady got to school and spent some time with Duck. I also know Ducks amazing imagination could mean she told lady anything, anything at all!!! Duck came home happy. Tomorrow is their class treat day and she can take a game in to play. She thrives on things being different. (Typical autism thrive on routine, PDA children thrive on change) So tomorrow is exciting. She will almost certainly go in well tomorrow. The demands will be reduced, she only has the morning for lessons. The rest of the day will be reasonably demand free. Hopefully that will mean she finishes the week on a good note. :-)
Duck hasn't mentioned her visit from behaviour support. I don't know if the lady spoke to her, or just observed her. I do know she was in the class, certainly for part of the morning. I don't want to pry, because if she didn't know she was being watched it will upset her if I mention it. But I am dying to know. The evening started off well for Duck and us. Brother decided to play on minecraft, and Duck asked to join in. Son appeared, they actually played together without fighting. (Must write that down, it doesn't happen often at the minute). Duck has not eaten enough today. She is really tired and very unenthusiastic about everything. I am glad its Friday tomorrow, I have time to feed her up a bit over the weekend. She needs fuel. She has been drinking her milkshake at school, which helps, but its not enough. I have given her a hot chocolate, made with nutrition mix, hopefully she will feel better by the morning.
I found myself reading this on one of the facebook pages tonight, I probably shouldn't print it, but I have deleted names and swear words. :-)
''My heart is breaking right now. My friend is on her knees and I can't do anything to help her and her son. I'm trying but I keep hitting walls. I don't know how you all do it. I've just gotten off the phone to her and I'm close to tears. All I could hear over the phone was C hitting and punching her and calling her every name under the sun. It was horrific to listen to but I can't imagine what it's like from her position. No one will help! I've called her MP, CAMHS fobbed me off and said that because I wasn't Cs mum that I wasn't able to leave a message for them! I tried to explain that I wanted her to call Louise and not me and finally they agreed they would. I've just called Social Services because I'm running out of opinions fast! I can see this lovely little boy disappearing in front of my eyes and a wonderful mum being pushed to breaking point and no one will help! What else can I do? Why won't these so called services shut up and listen?! I wish there was more I could do. It breaks my heart to see my friend suffering like this. ''
Another case of a mother on her knees because nobody believes her or helps her. I found myself writing to Downing Street, for what little it will do. Duck isn't as bad as this little boy, but still the traits are there. It could so easily be me this person is talking about. It could be anyone of you with your child. Nobody knows what causes PDA or autism of any form. But people really need to start understanding it and diagnosing correctly. PDA is not poor parenting. Its autism. How many times does this need to be said?
Petition to get PDA recognised. Lets help these people...
http://epetitions.direct.gov.uk/petitions/57807
PDA vs most common misdiagnosis
PDA is autism. However, because its not in the medical journal, despite having been recognised in the UK over 30 years ago, people who suffer from it are often misdiagnosed for conditions which are in the medical book and that are the closest fit that can be found. Common incorrect labels given to these people are Obsessional Defiance Disorder, ODD. Separation Disorder, SD and Attention Deficit Disorder ADD (sometimes with Hyperactivity in it, ADHD). I thought I would go through some of the main signs/symptoms of them and also describe how PDA differs.
Symptoms of ODD may include:
Symptoms of SD may include
A person with ADHD may have some or all of the following symptoms:
For example; PDA is Autism. ODD is not. PDA involves severe anxiety levels. ODD is not. PDA has links to the triad of impairments which are the true definition of autism. (Social and Emotional, flexibility of thought, language and communication) ODD does not meet the triad of impairments.
Individuals with ODD and Conduct disorder are also likely to suffer from co-morbid disorders such as ADHD, anxiety, depression and low self-esteem.
Duck fits most of the criteria for ODD. She does not fit the criteria for SD or ADHD. However, she also has some strong links to the triad of impairments and she has already been diagnosed as having severe, generalised anxiety issues, (which have not responded to treatment).
So, using the triad of impairments, let me describe Duck;
Social and Emotional;
Autistic children have difficulties with the following;
Friendships, unstructured parts of the day and working co-operatively.
Duck constantly has friendship issues, At break times, she will revert to role play games, and take charge. She will storm off or throw a tantrum if she loses the control and therefore does not work co-operatively. This has also been seen in class recently when she refused to work with a group of boys because they were not doing things the way she wanted it.
Flexibility of thought
Autistic children have difficulties with the following;
Changes to routine, Empathy and generalisation.
Duck does not like change. If she is pre warned, with sufficient notice, then it is possible to change a routine. However, sudden change she finds extremely difficult. She has little empathy and will often complain about a crying child when she sees one out and about and tell me to make it 'shut up' . She always needs specific detail. What time, how long etc. And if we are a minute past the time I gave, she becomes very anxious. Even if I clearly say 'Around 2pm'.
Language and communication.
Autistic children have difficulties with the following;
Difficulty in processing and retaining verbal information.
Difficulty understanding; jokes and sarcasm, social use of language, literal translation, body language, facial expressions and gesture.
Duck does not retain verbal information well. She will repeat questions over and over to clarify, she will check plans many times until she is happy with her own understanding. This means, she will often ask the same question in several different ways to ensure she gets the same answer.
Duck sometimes understands jokes, but mostly will mimic the social environment and laugh. However, if you ask her explanation of the joke, she will reply 'I don't know'. PDA children learn social mimicry. That's one of the main reasons they are not diagnosed, they 'appear social but lack depth'. Duck does not comprehend sarcasm and will take on the literal meaning of any comment made. Duck will mimic facial expressions and can pull amazing faces, however, she cannot 'read' body language and will not be able to work out if someone is upset or angry. Often she does not understand why they are upset or angry either.
PDA children are very complicated. They appear social, they mimic behaviours, they are often intelligent and talented. They can perform well at school, although they often have a limit. They can blend in with the crowd and appear to be conforming. They often go under the radar at school and the school don't believe there is anything wrong with them. They are unique. Duck has been under the radar for 5 years at school. Whilst they did notice an odd social issue, nothing else was picked up on, despite me saying she was autistic over and over. Because she had been assessed and not met the target for autism (again common in PDA because they appear social), the school believed there were difficulties, but they had no idea how daily life was affecting Duck. Until this term. This term she has reached her limit. She is trying to refuse school, they see it every morning. She is starting to be defiant in class (one or two small incidents) and she is becoming increasingly frustrated with life in general. Basically, she is not coping. She appears to have reached her limits and is beginning to show it to other people. This term Duck has given the school reason for concern. This term we have seen movement in support and we are on way to a diagnosis. I know Duck fits ODD. I also know from working with children that Duck also does not fit the profile for ODD when you look further into her. She fits the profile for PDA.
Duck IS autistic. Its time it was recognised. There is a saying 'The longer a child with autism goes without diagnosis, the harder they are to reach'. Duck is almost 10. She has gone long enough without diagnosis. She needs reaching.
As things stand, Duck wont be reached. PDA 'doesn't exist' in the medical books. ODD is the most common diagnosis for a PDA child, because they generally tick all the boxes. ODD is not autism, and nor does it get a child the support they so desperately need.
So far I have managed to get our local Cahms to agree PDA is an 'emerging' condition, which is a huge step from the total denial I had a few weeks before. However, PDA children are good at pretending, unlike most autistic children. When it comes to assessment, Duck has the ability to hide her difficulties. Its going to take a 'real' specialist to assess her and see what I see.
All I can do now is wait, then point out the differences between Duck and ODD/SD/ADHD. I know they are there, I can see them. So can most who really know Duck.
Join us, help us get hundreds of children, teenagers and adults diagnosed correctly. The treatment is different, the support is different. PDA need autistic help. ODD don't.
Sign the petition to get PDA correctly recognised. Lets change this and reach the autistic children who are going far too long with no diagnosis.
http://epetitions.direct.gov.uk/petitions/57807
Symptoms of ODD may include:
- Throwing repeated temper tantrums
- Excessively arguing with adults
- Actively refusing to comply with requests and rules
- Deliberately trying to annoy or upset others, or being easily annoyed by others
- Blaming others for your mistakes
- Having frequent outbursts of anger and resentment
- Being spiteful and seeking revenge
- Swearing or using obscene language
- Saying mean and hateful things when upset
Symptoms of SD may include
- An unrealistic and lasting worry that something bad will happen to the parent or carer if the child leaves.
- An unrealistic and lasting worry that something bad will happen to the child if he or she leaves the carer.
- Refusal to go to school in order to stay with the carer.
- Refusal to go to sleep without the caregiver being nearby or to sleep away from home.
- Fear of being alone.
- Nightmares about being separated.
- Complaints of physical symptoms, such as headaches and stomachaches, on school days.
- Repeated temper tantrums or pleading.
A person with ADHD may have some or all of the following symptoms:
- Difficulty paying attention to details and a tendency to make careless mistakes in school or other activities; producing work that is often messy and careless
- Easily distracted by irrelevant stimuli and frequently interrupting ongoing tasks to attend to trivial noises or events that are usually ignored by others
- Inability to sustain attention on tasks or activities
- Difficulty finishing schoolwork or paperwork or performing tasks that require concentration
- Frequent shifts from one uncompleted activity to another
- Procrastination
- Disorganised work habits
- Forgetfulness in daily activities (for example, missing appointments, forgetting to bring lunch)
- Failure to complete tasks such as homework or housework
- Frequent shifts in conversation, not listening to others, not keeping one's mind on conversations, and not following details or rules of activities in social situations
- obsessively resisting ordinary demands
- appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on)
- excessive mood swings, often switching suddenly
- comfortable (sometimes to an extreme extent) in role play and pretending
- language delay, seemingly as a result of passivity, but often with a good degree of 'catch-up'
- obsessive behaviour, often focused on people rather than things.
For example; PDA is Autism. ODD is not. PDA involves severe anxiety levels. ODD is not. PDA has links to the triad of impairments which are the true definition of autism. (Social and Emotional, flexibility of thought, language and communication) ODD does not meet the triad of impairments.
Individuals with ODD and Conduct disorder are also likely to suffer from co-morbid disorders such as ADHD, anxiety, depression and low self-esteem.
Duck fits most of the criteria for ODD. She does not fit the criteria for SD or ADHD. However, she also has some strong links to the triad of impairments and she has already been diagnosed as having severe, generalised anxiety issues, (which have not responded to treatment).
So, using the triad of impairments, let me describe Duck;
Social and Emotional;
Autistic children have difficulties with the following;
Friendships, unstructured parts of the day and working co-operatively.
Duck constantly has friendship issues, At break times, she will revert to role play games, and take charge. She will storm off or throw a tantrum if she loses the control and therefore does not work co-operatively. This has also been seen in class recently when she refused to work with a group of boys because they were not doing things the way she wanted it.
Flexibility of thought
Autistic children have difficulties with the following;
Changes to routine, Empathy and generalisation.
Duck does not like change. If she is pre warned, with sufficient notice, then it is possible to change a routine. However, sudden change she finds extremely difficult. She has little empathy and will often complain about a crying child when she sees one out and about and tell me to make it 'shut up' . She always needs specific detail. What time, how long etc. And if we are a minute past the time I gave, she becomes very anxious. Even if I clearly say 'Around 2pm'.
Language and communication.
Autistic children have difficulties with the following;
Difficulty in processing and retaining verbal information.
Difficulty understanding; jokes and sarcasm, social use of language, literal translation, body language, facial expressions and gesture.
Duck does not retain verbal information well. She will repeat questions over and over to clarify, she will check plans many times until she is happy with her own understanding. This means, she will often ask the same question in several different ways to ensure she gets the same answer.
Duck sometimes understands jokes, but mostly will mimic the social environment and laugh. However, if you ask her explanation of the joke, she will reply 'I don't know'. PDA children learn social mimicry. That's one of the main reasons they are not diagnosed, they 'appear social but lack depth'. Duck does not comprehend sarcasm and will take on the literal meaning of any comment made. Duck will mimic facial expressions and can pull amazing faces, however, she cannot 'read' body language and will not be able to work out if someone is upset or angry. Often she does not understand why they are upset or angry either.
PDA children are very complicated. They appear social, they mimic behaviours, they are often intelligent and talented. They can perform well at school, although they often have a limit. They can blend in with the crowd and appear to be conforming. They often go under the radar at school and the school don't believe there is anything wrong with them. They are unique. Duck has been under the radar for 5 years at school. Whilst they did notice an odd social issue, nothing else was picked up on, despite me saying she was autistic over and over. Because she had been assessed and not met the target for autism (again common in PDA because they appear social), the school believed there were difficulties, but they had no idea how daily life was affecting Duck. Until this term. This term she has reached her limit. She is trying to refuse school, they see it every morning. She is starting to be defiant in class (one or two small incidents) and she is becoming increasingly frustrated with life in general. Basically, she is not coping. She appears to have reached her limits and is beginning to show it to other people. This term Duck has given the school reason for concern. This term we have seen movement in support and we are on way to a diagnosis. I know Duck fits ODD. I also know from working with children that Duck also does not fit the profile for ODD when you look further into her. She fits the profile for PDA.
Duck IS autistic. Its time it was recognised. There is a saying 'The longer a child with autism goes without diagnosis, the harder they are to reach'. Duck is almost 10. She has gone long enough without diagnosis. She needs reaching.
As things stand, Duck wont be reached. PDA 'doesn't exist' in the medical books. ODD is the most common diagnosis for a PDA child, because they generally tick all the boxes. ODD is not autism, and nor does it get a child the support they so desperately need.
So far I have managed to get our local Cahms to agree PDA is an 'emerging' condition, which is a huge step from the total denial I had a few weeks before. However, PDA children are good at pretending, unlike most autistic children. When it comes to assessment, Duck has the ability to hide her difficulties. Its going to take a 'real' specialist to assess her and see what I see.
All I can do now is wait, then point out the differences between Duck and ODD/SD/ADHD. I know they are there, I can see them. So can most who really know Duck.
Join us, help us get hundreds of children, teenagers and adults diagnosed correctly. The treatment is different, the support is different. PDA need autistic help. ODD don't.
Sign the petition to get PDA correctly recognised. Lets change this and reach the autistic children who are going far too long with no diagnosis.
http://epetitions.direct.gov.uk/petitions/57807
MPs and Press Release
Duck came home in a reasonable mood. We had a small tantrum over the teacher telling her off. I don't know what happened, Duck tells me one thing but I know she doesn't tell the truth and I know teacher will have a totally different take on it. However, what I do know to be truthful is that the teacher was really shouting at Duck. I don't mean that she was REALLY shouting at Duck, but another of Ducks sensitivity issues is noise related. So in Ducks mind, a stern voice as a telling off feels like being shouted at. Ducks take on it is that the teacher really yelled at her. I am as confident as I can be that there was nothing more to the telling off than you would expect for any child. But Duck doesn't see things the way you, or I do. Nor the way her teacher does. She spent the evening complaining of a headache because of 'being shouted at' but wouldn't take any medicine because it was apparently lumpy. She didn't eat well, although she did better than yesterday. She drank a chocolate milk, the whole carton, for lunch, which is 200 calories. She has another 900-1000 in the evening, so for Duck, that's quite a good days eating although she still need to increase it somewhat.
Tomorrow morning, behaviour support are going to be at school in the morning to observe the separation issues. Normally she has a PPA cover teacher on Thursday mornings, whom she prefers to her normal teacher so I was concerned she would go in better. I told her because of the inset day, her PPA teacher would not be with them and she would have her normal teacher. This totally frustrated her because of the 'shouting' today. Tomorrow is meant to be her 'day off from the teacher'. I don't like winding Duck up and setting her up to fail, she has enough anxiety in her life, however, sometimes these things have to be done.
I managed to get Duck bathed this evening. She also did her teeth for the first time since Monday. She said she finds it easier to do in the evening when she doesn't have the anxiety of school bothering her as badly. So I agreed evening only would be ok. I doubt it will be this easy for the rest of the week.
Duck needed help getting ready for bed, as usual. She had complained of being tired, but still finds it hard to settle. She was really restless and kept saying she didn't want to go to school tomorrow. For once I was pleased. Her medicine didn't help much today. I wanted to watch Waterloo Road but was stuck settling Duck down instead. Looking forward to my 3 hours off tomorrow afternoon. I can watch it then!
I told senco today that CAMHS, (childrens mental health services) have referred Duck for a full ADOS autism assessment, to ASSC, autistic support for schools, to Occupational Therapy for sensory issues and a psychotherapist for full detail. Senco seemed surprised they are doing so much. Last time I spoke to senco, they were reluctantly referring for the ADOS only. She asked if something had happened to change things. I explained it may well be because the MP has got involved. Lets face it, I have been fighting for 9 years for Duck, I have been fobbed off before and I am not being fobbed off again. I think CAMHS have realised that and decided to do things properly. I also have a meeting coming soon with the school and other professionals. I am not expecting them to be blaming poor parenting. They really don't want to try! Its been said if there is an issue with your first child, the parent gets blamed for lack of knowledge, if its your second or third, the parent is blamed for not giving them enough time and if you have 1 of 15 kids who has behavioural problems, the parent is blamed as 'this one is the one you didn't want'. Seems first case is to blame the parent. I have to admit, I have had issues where I have blamed parents for childrens poor behaviour, however, in both instances I was proved right.
I got an email a few days ago from the Autism Daily News. They are running some articles on PDA and want to run my story and was I interested? Needless to say I said yes. I sent her all my blogs, plus some in depth work I had left at CAMHS at my last appointment. I told her to make what she wanted of it all. Gulp! I didn't hear back from her so I had assumed she wasn't running it, however, this evening, I got a message asking for a couple more details and telling me it was almost ready. Excited or nervous?? Lets face a very scary thought here...I could be wrong.
Whilst Ducks behaviour fits PDA really well, I still hold a niggling doubt that I may be wrong, and then I will look a fool. I doubt I would really ever believe anyone who told me she was not autistic/PDA. I have known it for so long and gone along with her ways that it seems normal behaviour most of the time. My close friends and family can see PDA in her too. Friends who are not so close don't see it at all. All they see is a child who can behave perfectly well half the time and the other half of the time behaves like a spoilt brat. They cant see the anxiety building in her that causes the brattish behaviour. They cant understand how she can flip into a tantrum over something so small. They don't 'get it'. They don't understand her. They don't get why she finds it so hard to say 'hello' or 'goodbye'. They don't understand why she is still unable to make small talk. A 'how are you' gets the response 'fine'. Not because she is fine, but because that's what you say, isn't it?
I am starting to feel out of my depth. My next few months are going to be a line up of meetings and assessments and interviews and accusations and courses. My head is a blur and I am feeling the pressure. Must remember in it all;
Philippians 4:13 'I can do all things through Christ who strengthens me.'
The other thing I need to focus on is the petition. We are fighting to get PDA recognised within the NHS throughout the UK. Currently its a postcode lottery and this needs changing.
I started the petition in December because I was frustrated with being told PDA doesn't exist. I have recently spoken to a manager at our local CAMHS who has confirmed its 'An emerging condition'. Wow, a big change in a short space of time. Its emerging alright, its going to explode within the NHS. The PDA army are all fighting. Please help and fight with us. Sign and share the petition. We need over 10000 signatures to get our case looked at and 100000 to get to parliament. We have a long, long way to go to hit our target. We have lots of press releases coming out, the Mirror are involved with some people, the Autism press whom I am in contact with and we have an online PDA awareness day coming in February. This year, PDA will make its name. Please help us. The link is below.
http://epetitions.direct.gov.uk/petitions/57807
Tomorrow morning, behaviour support are going to be at school in the morning to observe the separation issues. Normally she has a PPA cover teacher on Thursday mornings, whom she prefers to her normal teacher so I was concerned she would go in better. I told her because of the inset day, her PPA teacher would not be with them and she would have her normal teacher. This totally frustrated her because of the 'shouting' today. Tomorrow is meant to be her 'day off from the teacher'. I don't like winding Duck up and setting her up to fail, she has enough anxiety in her life, however, sometimes these things have to be done.
I managed to get Duck bathed this evening. She also did her teeth for the first time since Monday. She said she finds it easier to do in the evening when she doesn't have the anxiety of school bothering her as badly. So I agreed evening only would be ok. I doubt it will be this easy for the rest of the week.
Duck needed help getting ready for bed, as usual. She had complained of being tired, but still finds it hard to settle. She was really restless and kept saying she didn't want to go to school tomorrow. For once I was pleased. Her medicine didn't help much today. I wanted to watch Waterloo Road but was stuck settling Duck down instead. Looking forward to my 3 hours off tomorrow afternoon. I can watch it then!
I told senco today that CAMHS, (childrens mental health services) have referred Duck for a full ADOS autism assessment, to ASSC, autistic support for schools, to Occupational Therapy for sensory issues and a psychotherapist for full detail. Senco seemed surprised they are doing so much. Last time I spoke to senco, they were reluctantly referring for the ADOS only. She asked if something had happened to change things. I explained it may well be because the MP has got involved. Lets face it, I have been fighting for 9 years for Duck, I have been fobbed off before and I am not being fobbed off again. I think CAMHS have realised that and decided to do things properly. I also have a meeting coming soon with the school and other professionals. I am not expecting them to be blaming poor parenting. They really don't want to try! Its been said if there is an issue with your first child, the parent gets blamed for lack of knowledge, if its your second or third, the parent is blamed for not giving them enough time and if you have 1 of 15 kids who has behavioural problems, the parent is blamed as 'this one is the one you didn't want'. Seems first case is to blame the parent. I have to admit, I have had issues where I have blamed parents for childrens poor behaviour, however, in both instances I was proved right.
I got an email a few days ago from the Autism Daily News. They are running some articles on PDA and want to run my story and was I interested? Needless to say I said yes. I sent her all my blogs, plus some in depth work I had left at CAMHS at my last appointment. I told her to make what she wanted of it all. Gulp! I didn't hear back from her so I had assumed she wasn't running it, however, this evening, I got a message asking for a couple more details and telling me it was almost ready. Excited or nervous?? Lets face a very scary thought here...I could be wrong.
Whilst Ducks behaviour fits PDA really well, I still hold a niggling doubt that I may be wrong, and then I will look a fool. I doubt I would really ever believe anyone who told me she was not autistic/PDA. I have known it for so long and gone along with her ways that it seems normal behaviour most of the time. My close friends and family can see PDA in her too. Friends who are not so close don't see it at all. All they see is a child who can behave perfectly well half the time and the other half of the time behaves like a spoilt brat. They cant see the anxiety building in her that causes the brattish behaviour. They cant understand how she can flip into a tantrum over something so small. They don't 'get it'. They don't understand her. They don't get why she finds it so hard to say 'hello' or 'goodbye'. They don't understand why she is still unable to make small talk. A 'how are you' gets the response 'fine'. Not because she is fine, but because that's what you say, isn't it?
I am starting to feel out of my depth. My next few months are going to be a line up of meetings and assessments and interviews and accusations and courses. My head is a blur and I am feeling the pressure. Must remember in it all;
Philippians 4:13 'I can do all things through Christ who strengthens me.'
The other thing I need to focus on is the petition. We are fighting to get PDA recognised within the NHS throughout the UK. Currently its a postcode lottery and this needs changing.
I started the petition in December because I was frustrated with being told PDA doesn't exist. I have recently spoken to a manager at our local CAMHS who has confirmed its 'An emerging condition'. Wow, a big change in a short space of time. Its emerging alright, its going to explode within the NHS. The PDA army are all fighting. Please help and fight with us. Sign and share the petition. We need over 10000 signatures to get our case looked at and 100000 to get to parliament. We have a long, long way to go to hit our target. We have lots of press releases coming out, the Mirror are involved with some people, the Autism press whom I am in contact with and we have an online PDA awareness day coming in February. This year, PDA will make its name. Please help us. The link is below.
http://epetitions.direct.gov.uk/petitions/57807
When first day isnt the worst day
Despite being a good day, Duck was sad as the evening progressed. In her mind 'first day is the worst day' when it comes to school. But if the first day went ok, then the second day must be the worst. I managed to get her to eat, well, drink a reasonable amount considering I only had from 3 till 8.30. Duck even asked for her 'coke' which was her way of asking for medicine without actually saying the words. When it came to bed time, we had the usual PDA type issues. She couldn't move, legs won't work, too cold, too comfortable to get up, too tired to walk up the stairs the list of avoidances can go on for hours. Its not to be difficult, its because Duck cannot cope with the anxiety of the demand to go to bed. Even more so, the anxiety of school tomorrow is playing on her mind. Duck did come upstairs, when I told her the puppy was in her bed...thankfully the puppy was nowhere near her room but reverting to these kind of tactics usually ensures Duck complies without a meltdown. Duck made it to her room and flopped on the floor. She 'couldn't' get up' or get changed. Nor could she do anything to help herself. The emotional exhaustion had taken its toll and once again I found myself undressing Duck and putting her pyjamas on her. Just like getting an uncooperative 2 year old ready for bed. Duck asked to watch a 10 minute clip on her tablet. I agreed provided she was in her bed, surprising, she agreed and even turned it off after 10 minutes, although she asked for sleep music. She chose nursery rhymes to listen too. She asked me to sleep in her room. Again, I said no, it was too cold and uncomfortable. I said I would stay until she was asleep. It didn't take long. Duck was asleep not long after 9 for the first time in weeks.
For anyone who wonders why I call our daughter Duck, follow this link.
For anyone who already knows, don't do it again!!!! There are 3 sequels to the duck song. Feel free to have a good look, although the fourth is adult only. Ha ha...have I got everyone singing???
Living with daughter is like living with that Duck. Living with a child with any form of mental health issue is hard. We are dealing with an undiagnosed invisible illness. Duck is amazing. She has a great talent for singing, she can be totally 'normal' and a truly amazing, funny, loving child. But she is also a Dr Jeckyl and Mr Hyde. Life can be like treading on eggshells, you never know when or why she will explode. Other than school, that's totally predictable now.
I have to wake Duck up at 6.30 every morning. Not because I need or want her up that early, but because she insists on going to the toilet first thing. She has said for years she leaks wee after going to the toilet and wants to make sure she has finished leaking before we go to school. So 6.30 it is. We have checked out with the GP about the leaking. She has had urine tests, kidney scans. There is nothing wrong with Duck. She just has a few HUGE sensory issues, this is one. Duck then will not use the toilets at school and will wait until 3.45 to use the toilet at home. This is for 3 reasons. One being the leaking wee part, two being the 'ghosts' in the toilets that one child told her about in reception and she has never forgotten and thirdly because she hates locking herself in. She has asked a friend to hold the door for her when she has been really desperate in the past. Sadly, it was the wrong person to ask, she was a spoilt girl with a nasty streak who waited till lots of other kids came into the toilet and pushed Ducks door open so they could all see. She was only in year 2. Can you imagine the horror to a very private child? Never mind a child who could well be autistic. She has never forgiven that child she reminds me of it every time I suggest using the toilets. She only trusts one child to hold the door for her, and they are in separate classes now so its hard. I can remember well the day she came home from school and had a massive meltdown because of the child opening the door. She really didn't understand why her 'friend' would do such a thing. She was HUGELY embarrassed about other girls seeing even just her knickers, never mind anything else. Duck has used the toilet once this term. Apparently she was going to burst so she braved it and asked her teacher at 3pm if she could go. Thankfully, her teacher knew about the refusal and realised she must be pretty desperate to go if she actually asked, so she let her go. Duck wouldnt have coped if she had been told 'No, wait till the bell goes'. Currently, being privacy is a huge issue for Duck. Even around daddy or brother. Nobody is allowed to see her knickers, except me and she will totally panic if her trousers slip and someone may have seen them. She goes through obsessions like this and with school doing a talk on personal hygiene and private parts, Duck has taken it all to heart, and all to the extreme. Its not uncommon behaviour in a child with mental health issues such as autism. Indeed, whilst I paused for a bit midst writing this post I found this on an autistic facebook page. ''anyone got any ideas on how to get k to show dr his bits, i have found a lump in his groin/ pelivic area, but last time dr wanted to look as he was soar he ended up trashing his office, help!!!''. There are many other comments around how children cannot cope with the anxiety of visits to the Dr, dentist or any other similar place.
Our dentist can only get Duck to open her mouth so he can see her teeth. Even then its very brief viewing. However, we see each time as a positive step. He is very patient and only looks, he tells her in advance that he wont do anything, and he sticks to his word. People with that amount of understanding is a huge benefit. We hope that slowly Duck will build up a trust with him so he can really look at her teeth one day without a meltdown. I just hope he doesn't leave the branch to move on.
School time this morning was much the same as yesterday, only Duck used different excuses. Today it was she doesn't want to do PE, because its football and she hates football, and she doesn't have the energy because she cant eat. She cant have her milkshakes either at school because she cant drink in front of anyone. She cant go in because her brother goes there and right now she hates her brother. She got angry with her brother this morning. So she ran at him ready to punch. He is a bit bigger and stronger, so he just put his foot out in front of him from where he was sitting on the sofa. Obviously that caused her to impact her tummy on his foot. Now she cant go to school because he 'kicked her in the tummy' and now her tummy hurts, her throat hurts, she must have tonsillitis and she cant walk. Oh my, the list really is endless. I cajoled her into the porch and put her coat on her amidst sobbing about just about everything. Then I put her shoes on for her and led her crying to the car. I had to put her seat belt on her and make sure her bag was in too, she was beyond the ability of thinking for herself. Our arrival at school was much as normal. Senco appeared as if by magic and I whipped my arm away and bunked out the door. Today we had managed to get there a little earlier, so there were no parents standing there watching the scene. Other parents make it harder, firstly because they are in my way when I am trying to escape, secondly they hinder senco trying to stop Duck following me and thirdly...well..the looks. The disgusted looks of how badly behaved my daughter is, and how their child would never behave in such a way. Some times its looks from people who know and try to understand. But the others are really not helpful.
And then there are almost 7 hours break for me from my little Duck. As much as I love her, I also love my time off. :-) School is the only real break I get from her. I am lucky that Ducks daddy and I are married, it does mean I can go out for a while some evenings, and I can get short breaks. There are many who have children with special needs of some form who don't have that and never get a break other than school. Wow that must be harder than hard. It takes endless amounts of patience in looking after a child with special needs of any form. I often dissappear when husband gets home, just for time out for myself. I nip to the shops or walk the dogs. Occasionally I visit a friend. I am lucky I have friends who understand too. I get plenty of time to get my thoughts together and alleviate the frustration. I wouldn't have survived this long without my friends.
Our dentist can only get Duck to open her mouth so he can see her teeth. Even then its very brief viewing. However, we see each time as a positive step. He is very patient and only looks, he tells her in advance that he wont do anything, and he sticks to his word. People with that amount of understanding is a huge benefit. We hope that slowly Duck will build up a trust with him so he can really look at her teeth one day without a meltdown. I just hope he doesn't leave the branch to move on.
School time this morning was much the same as yesterday, only Duck used different excuses. Today it was she doesn't want to do PE, because its football and she hates football, and she doesn't have the energy because she cant eat. She cant have her milkshakes either at school because she cant drink in front of anyone. She cant go in because her brother goes there and right now she hates her brother. She got angry with her brother this morning. So she ran at him ready to punch. He is a bit bigger and stronger, so he just put his foot out in front of him from where he was sitting on the sofa. Obviously that caused her to impact her tummy on his foot. Now she cant go to school because he 'kicked her in the tummy' and now her tummy hurts, her throat hurts, she must have tonsillitis and she cant walk. Oh my, the list really is endless. I cajoled her into the porch and put her coat on her amidst sobbing about just about everything. Then I put her shoes on for her and led her crying to the car. I had to put her seat belt on her and make sure her bag was in too, she was beyond the ability of thinking for herself. Our arrival at school was much as normal. Senco appeared as if by magic and I whipped my arm away and bunked out the door. Today we had managed to get there a little earlier, so there were no parents standing there watching the scene. Other parents make it harder, firstly because they are in my way when I am trying to escape, secondly they hinder senco trying to stop Duck following me and thirdly...well..the looks. The disgusted looks of how badly behaved my daughter is, and how their child would never behave in such a way. Some times its looks from people who know and try to understand. But the others are really not helpful.
And then there are almost 7 hours break for me from my little Duck. As much as I love her, I also love my time off. :-) School is the only real break I get from her. I am lucky that Ducks daddy and I are married, it does mean I can go out for a while some evenings, and I can get short breaks. There are many who have children with special needs of some form who don't have that and never get a break other than school. Wow that must be harder than hard. It takes endless amounts of patience in looking after a child with special needs of any form. I often dissappear when husband gets home, just for time out for myself. I nip to the shops or walk the dogs. Occasionally I visit a friend. I am lucky I have friends who understand too. I get plenty of time to get my thoughts together and alleviate the frustration. I wouldn't have survived this long without my friends.
Support is vital. Support from all around, school, family, friends. Even more so recently, the support from a couple of Facebook pages has been invaluable is gaining more understanding of Duck and why she behaves as she does. Understanding her means I can be more patient, I can pre-empt things and I can word things differently so she doesn't feel the pressure and more importantly I no longer feel alone. There are hundreds of us out there fighting for PDA. Children, adults and teenagers. Be warned, we are no longer fighting quietly or alone. We are fighting together, united as an army. The PDA army. And we are winning. people are hearing us, people are starting to listen. PDA will soon be on the map. You can help. You dont have to stand helpless, reading my blogs and being unable to help. You can stand with us by signing and sharing the petition to get the NHS to recognise PDA. Follow the link. It only takes a minute.
http://epetitions.direct.gov.uk/petitions/57807
http://epetitions.direct.gov.uk/petitions/57807
School and Duck
Wow, Duck slept all night but was up before me (I was up at 6.30). When I passed her room, she was crying and said I don't want to go to school. The anxiety kicked off alright from that point on. Duck got dressed, and hair brushed. She didn't do her teeth, but really, on a day of extremely high anxiety levels, you have to pick your battles. Todays battle was going to school. Everything else was on hold. Duck came down stairs and refused anything for breakfast. (Duck doesn't use toilets at school and wont drink anything until lunch time. Which is not helpful when you have a stick thin child who is on liquids only). She told me not to pack any lunch, she wasn't going to eat it anyway. I ignored and put her prescription shake in, a smoothie drink and a chocolate milkshake. I just hoped she at/drank some of it. Duck sat at the table in the kitchen crying. Saying time was going by too quickly and it cant be almost school time already, and how she was going to turn the time back, and how she wasn't ready to see her teacher again, and how she didn't have any friends, and how she hates school. All the normal stuff. There was one thing that was upsetting. She told me she had been good over the holidays (which, basically she had) and why was I punishing her by sending her to school. Hard to explain that its not a punishment, but how important her education is. If she sees school as a punishment, it makes you wonder if it really is the right place for her. So many PDA children are home schooled, or un schooled because of the severe anxiety they suffer with education system. If they are not in a place that understands how the cant cope with direct instructions, they just cant get on no matter how hard everyone tries.
Lets face it, school is full of direct instructions. There is do this, do that, go there, use this, work this out. Almost everything a child is told at school involves a direct instruction. Then there is the 'pick a random person to answer a question' or at our school they 'pick straws' for things too. All of which for 'normal' children is great, but for a child who suffers severe anxiety, all it does is to add to the severity. Duck got through almost a box of tissues this morning, she also had a panic attack because she got tears on her trousers, and she can not cope with wet clothes (sensory issue alert). Then she went and hid in her bed as we tried to go. Not very successfully though. Finally she allowed me to lead her down the stairs, dress her with her shoes and coat much like a toddler and lead her to the car, where she immediately went into another panic attack because it was raining and she didn't want to get wet, nor get into a car that had a rain drop on it, nor put her seatbelt on. Calmly, I ignored all of her complaints and managed to get her securely into the car. We had tears all the way to school and the expected refusal the other end. Bags out and in the office, I returned for Duck who was trying to hide in the car. I led her out and into the office where she suddenly decided to become violent. The school senco appeared, and mid assault I turned and bolted out of the office leaving senco to get her into school. Just another normal school run really. Senco called me later. She has arranged for behaviour support to come and observe Duck going into school on Thursday. What's the betting that she will go in like an angel, even though she wont know the woman is observing? Then, hopefully, a week later we will be having a meeting to discus the way forward. Until we have our assessment at least.
I have heard many people say its amazing how an autism diagnosis changes the attitude of the support (behaviour support, school etc). Its sad really, a child needs support for wherever they are at, and a diagnosis shouldn't really make much difference. I have to say, I have had good support so far from the school around Ducks behaviour. She is mostly an angel once she is in school, but they are really trying to understand and help with the behaviours that they only get a glimpse of.
Only one person has so far blamed poor parenting for the situation. And she wont be involved in our lives again. The fact that I have worked with children for around 8 years and have done various courses on managing behaviour should give the impression I have a good idea of behaviour management. None of the courses prepare you for an extremely volatile, anxious child who can flip and have 2 year old style tantrums at the drop of a hat. None of them prepare you for the fact that your child may not be 'normal'.
I don't believe in a perfect parent, we can only try our best. But I do know we have used all the managing behaviour strategies that we have been taught to their full extent. They don't work! Put things in perspective, have you ever had a child sick in bed with a nasty bug and tried telling them if they don't get better, you will put them on time out? Or you will take their favourite toy away? or use a sticker chart to make them better? No? It just wouldn't work would it? I guess you think its a mad question. But my point is an illness wont go away with great parenting. You could be the most amazing parent in the world, but you cant make an illness go away using the modern parenting techniques. You couldn't even use the old fashioned methods and beat an illness out of a child.
Its sad that for some reason, people think these techniques will work on a child with a mental illness. I don't follow their reasoning. Just because you cant 'see' Ducks illness, and you cant 'hear' ducks illness as you can with a cough or a cold, doesn't mean its not there. Ducks illness will never go away. She may never 'grow up' as her peers will do. We don't know what the future holds for her. What we do know, is a sticker chart is not going to change things. Quite the opposite, a sticker chart that we enforce on her is an extra demand that she just cannot cope with at the moment. She has a sticker chart that she has made herself and she happily rewards her good behaviour. But that's part of the PDA control. She can cope with that because she set it up and she has set the boundaries. They are good boundaries, and I am happy to follow them. Setting her own targets is good for PDA children. Parents setting them for them and effectively 'laying down the law' is not. Its not soft parenting, and its not giving in to her. Its adjusting the rules to help her understand and follow them.
I talk about Duck as if we know what wrong with her. We still don't know, the system has been failing Duck since she was a baby, and here we are, with an almost 10 year old fighting for our sakes and hers. We believe she has autism. We have said that since she was a tiny baby. We always felt that typical autism didn't quite fit, we also felt that aspergers didn't quite fit either. Yet we still maintained she has 'a form of autism' although we couldn't say what. Until that day, about 3 months ago when I stumbled on a facebook like to PDA. It was like a bolt of lightning. Everything fitted. Whilst Duck was never a passive baby in her vocal ability :-) She was passive in wanting to play and be involved. She was passive at playgroups as a baby, hated them as a toddler. She was passive in the car. So she ticks every box. She was diagnosed with anxieties but her social phobia never fitted. Have you ever known a child with social phobia chose to sing a solo in the church nativity in front of 150 people? No, me neither. Anxious yes, social phobia...not quite right.
I picked her up from school, this is always dangerous, you never quiet know what you are going to get, Dr Jeckyll or Mr Hyde. Especially on first day of term. Today, it was Dr Jeckyll, I am pleased to say. Tomorrow, who knows?!! Duck had a good day, she didn't eat/drink anything much, less than half her prescription shake. Once in the car she drank the rest. Total 300 calories so far today. I have a lot of work to get her up to a decent figure by bed time!!!
PDA autism is not recognised nationally in the NHS. Its a postcode lottery for a diagnosis. I (amongst many) are fighting for change. Please can you help. Please sign and share the petition. We need this, for our children amongst others.
http://epetitions.direct.gov.uk/petitions/57807
Lets face it, school is full of direct instructions. There is do this, do that, go there, use this, work this out. Almost everything a child is told at school involves a direct instruction. Then there is the 'pick a random person to answer a question' or at our school they 'pick straws' for things too. All of which for 'normal' children is great, but for a child who suffers severe anxiety, all it does is to add to the severity. Duck got through almost a box of tissues this morning, she also had a panic attack because she got tears on her trousers, and she can not cope with wet clothes (sensory issue alert). Then she went and hid in her bed as we tried to go. Not very successfully though. Finally she allowed me to lead her down the stairs, dress her with her shoes and coat much like a toddler and lead her to the car, where she immediately went into another panic attack because it was raining and she didn't want to get wet, nor get into a car that had a rain drop on it, nor put her seatbelt on. Calmly, I ignored all of her complaints and managed to get her securely into the car. We had tears all the way to school and the expected refusal the other end. Bags out and in the office, I returned for Duck who was trying to hide in the car. I led her out and into the office where she suddenly decided to become violent. The school senco appeared, and mid assault I turned and bolted out of the office leaving senco to get her into school. Just another normal school run really. Senco called me later. She has arranged for behaviour support to come and observe Duck going into school on Thursday. What's the betting that she will go in like an angel, even though she wont know the woman is observing? Then, hopefully, a week later we will be having a meeting to discus the way forward. Until we have our assessment at least.
I have heard many people say its amazing how an autism diagnosis changes the attitude of the support (behaviour support, school etc). Its sad really, a child needs support for wherever they are at, and a diagnosis shouldn't really make much difference. I have to say, I have had good support so far from the school around Ducks behaviour. She is mostly an angel once she is in school, but they are really trying to understand and help with the behaviours that they only get a glimpse of.
Only one person has so far blamed poor parenting for the situation. And she wont be involved in our lives again. The fact that I have worked with children for around 8 years and have done various courses on managing behaviour should give the impression I have a good idea of behaviour management. None of the courses prepare you for an extremely volatile, anxious child who can flip and have 2 year old style tantrums at the drop of a hat. None of them prepare you for the fact that your child may not be 'normal'.
I don't believe in a perfect parent, we can only try our best. But I do know we have used all the managing behaviour strategies that we have been taught to their full extent. They don't work! Put things in perspective, have you ever had a child sick in bed with a nasty bug and tried telling them if they don't get better, you will put them on time out? Or you will take their favourite toy away? or use a sticker chart to make them better? No? It just wouldn't work would it? I guess you think its a mad question. But my point is an illness wont go away with great parenting. You could be the most amazing parent in the world, but you cant make an illness go away using the modern parenting techniques. You couldn't even use the old fashioned methods and beat an illness out of a child.
Its sad that for some reason, people think these techniques will work on a child with a mental illness. I don't follow their reasoning. Just because you cant 'see' Ducks illness, and you cant 'hear' ducks illness as you can with a cough or a cold, doesn't mean its not there. Ducks illness will never go away. She may never 'grow up' as her peers will do. We don't know what the future holds for her. What we do know, is a sticker chart is not going to change things. Quite the opposite, a sticker chart that we enforce on her is an extra demand that she just cannot cope with at the moment. She has a sticker chart that she has made herself and she happily rewards her good behaviour. But that's part of the PDA control. She can cope with that because she set it up and she has set the boundaries. They are good boundaries, and I am happy to follow them. Setting her own targets is good for PDA children. Parents setting them for them and effectively 'laying down the law' is not. Its not soft parenting, and its not giving in to her. Its adjusting the rules to help her understand and follow them.
I talk about Duck as if we know what wrong with her. We still don't know, the system has been failing Duck since she was a baby, and here we are, with an almost 10 year old fighting for our sakes and hers. We believe she has autism. We have said that since she was a tiny baby. We always felt that typical autism didn't quite fit, we also felt that aspergers didn't quite fit either. Yet we still maintained she has 'a form of autism' although we couldn't say what. Until that day, about 3 months ago when I stumbled on a facebook like to PDA. It was like a bolt of lightning. Everything fitted. Whilst Duck was never a passive baby in her vocal ability :-) She was passive in wanting to play and be involved. She was passive at playgroups as a baby, hated them as a toddler. She was passive in the car. So she ticks every box. She was diagnosed with anxieties but her social phobia never fitted. Have you ever known a child with social phobia chose to sing a solo in the church nativity in front of 150 people? No, me neither. Anxious yes, social phobia...not quite right.
I picked her up from school, this is always dangerous, you never quiet know what you are going to get, Dr Jeckyll or Mr Hyde. Especially on first day of term. Today, it was Dr Jeckyll, I am pleased to say. Tomorrow, who knows?!! Duck had a good day, she didn't eat/drink anything much, less than half her prescription shake. Once in the car she drank the rest. Total 300 calories so far today. I have a lot of work to get her up to a decent figure by bed time!!!
PDA autism is not recognised nationally in the NHS. Its a postcode lottery for a diagnosis. I (amongst many) are fighting for change. Please can you help. Please sign and share the petition. We need this, for our children amongst others.
http://epetitions.direct.gov.uk/petitions/57807
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