The big issue at the minute is bed time. Daughter really doesn't want to go to bed. It seems to be the peak of her anxiety. And, when her anxiety peaks, so does the rest of the house! Last night, she sat in bed making really annoying bubble noises, just loud enough to annoy brother. He asked her to stop, they got louder, I asked her to stop, louder still. Daddy asked her to stop, louder again. I told her if she didn't stop I would shut her bedroom door. She yelled 'NO' at me, and got even louder. Husband came up and shut her door! Daughter hit total meltdown. bashing the door, shouting, screaming etc. I was upstairs on the top floor in our bedroom sorting out. Husband asked if she would stop making the horrid noises. Daughter said yes, so he opened the door. She came running up to me screaming 'mummy. mummy' in a voice that can only be described as total panic. She jumped onto our bed and buried herself under the duvet (Typical sign of her not being able to cope with the situation). I left her there without speaking so she could calm down a bit. Then I said I was going down stairs. Daughter didn't want to come. So I left her. I waited 5 mins, then asked her to come to her own room. She shouted 'no' back to me. I told her if she didn't come down, I would sleep in her bed. She flared up again, and flew down the stairs really angry at the thought and flew into her bedroom. As soon as she realised I wasn't there, she got mad at me for tricking her and again, I went to shut her door as she wouldn't stop shouting. By this time, we were in full meltdown again. Closed door was best for everybodys safety! Husband held door whilst I got daughter a drink with her medicine mixed in. By the time I got upstairs, she had calmed a little and was having a daddy cuddle. I told her the drink had medicine in it, but she still drank it without complaint. She still wouldn't go to her room and said she wanted to sleep in our room. This is one avenue we avoid at all costs. Husband said it was going to rain hard and as it was a loft room, she would never sleep through it. I then said 'nor will I'! Daughter said 'mummy can sleep in my room'. As we have a bed all set up and ready, we both decided that was a good plan for two reasons, one, daughter would settle down and two, I would sleep better. So we went with that on the condition daughter settled. To be fair, she did mess about a little, but about half and hour later, I had managed to get her to sleep. By then, it was 1045.
The next morning daughter was in a reasonable mood, we were going to soft play and she loves it there, she especially wanted to play with one of the children I was looking after that day. She coped well, but by 11 it was really busy and I could see she was looking unhappy, so we left. We got home and daughter was invited for the afternoon to a friends. Well, to be honest, she was invited for a sleep over. I said no to that because she is clearly anxious at the minute. We have avoided all demands that have been possible with her over the holidays, and I really felt it wouldn't take much to upset her. I didnt want her upset at a friends. I am glad I did too. I picked up one very upset and anxious child. Nothing what so ever to do with the friends visit, but because seeing her friend has made her realise its back to school soon. Daughter came home hungry, but saying she cant eat because she chokes on everything. She even said herself that its worrying about school that's making her unable to swallow food. I guess there is good in that. If she understands what causes her anxiety, perhaps she can work a way round it. In her eyes, the answer is simply one of two things. Firstly, she wants a different teacher (personally, I think its the work load and social aspects that she struggles with more than the teacher) and secondly and much more simply, to not go to school at all.
I have mentioned the first to the school, and they wont move her class. I totally agree with them, but I also felt it was right to mention it, as its the main complaint I get from daughter. The second option is a definite no go.
So, a very anxious, stressed child I now have. It will remain that way for a while. Our peaceful Christmas holidays are over.
I have had some good news today though. I was contacted via twitter by a senior writer for the Autism Daily Newscast. She wants to run some stuff on PDA, she wants to get my story to print as well as others and she is hoping to get more support for the petition and general recognition. Wow, I cant wait. :-)
Also, the PDA facebook group have set a date for PDA awareness. We want to target twitter and facebook as well as email MPs throughout the UK and generally spread as much information about PDA as we can. When the person from Camhs called me yesterday, he described PDA as an 'emerging condition'. Our aim is to emerge it totally. I wonder if any of you would be willing to help?
We have set the date of 15th February, we have 6 weeks to plan and act. If you are interested in supporting us, feel free to join the facebook page.
If you would like some more information on PDA, here is the link to the PDA resource page
And finally, a huge plea for support. PDA currently is not diagnosed nationally throughout the NHS, its a post code lottery. We are fighting to stop this. Please can you help, we need people to sign our petition and share it on facebook, twitter or any other social media. We need your help.