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
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...