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.