Saturday, 25 January 2014

Bed time

Bed time was a little difficult last night. Despite being extremely tired, daughter didn't want to go to bed. I gave her some medicine in a drink and waited till she was getting obviously sleepy then she came upstairs. She didn't want me to leave her and tried getting out of bed to follow me down. I told her I would stay as long as she was good. I think I stayed less than 5 minutes before she was asleep.
This morning I had some good news, a duty manager from Camhs called me (finally). He told me they wanted to assess daughter for autism under the ADOS test. He obviously had a lot of detail about me because he knew I suspect PDA. He told me that its still 'emerging' and there is not much known about it. He also said they want to send occupational therapy into school to help with daughters sensory issues, refer to camhs psychotherapists and send Assc (autistic support) in to help. I know the lady from Assc. She has told me she is unable to help without a diagnosis which we don't yet have, however, I was told today that they are over ruling and sending her in anyway.
So, finally, after 9 years of me saying my daughter is not 'normal', I am being taken seriously. I do wonder if its due to all the information I left at my last Camhs meeting or if its because my MP has been campaigning on our behalf to get some support. I guess I will never know.
Now the fun starts, there will be meetings followed by meetings and then meetings to discuss the previous meetings. Its going to be an interesting few months.
Daughter isn't in a great mood today either. She managed a chocolate pancake for breakfast followed by a jar of banana yoghurt baby food. We went to the look out to visit the indoor science area. Daughter was happy there as she was able to choose what we did next. She wasn't so happy when we came home though. Not because she wanted to stay, in fact, she was the one saying she was bored and could we go. Daughter was complaining because she wanted to sit in the seat that her brother had got to first. He said he wasn't moving, (lets be honest, he was there first and its only a seat). So daughter got cross. She was standing by the car, yanking the handle, which by now, brother had locked. She got really stroppy, but we all just sat in the car and waited for her. Eventually she went round to the other side of the car, got in and announced she was not putting her seatbelt on. I opened my door to do it for her, at which point she changed her mind and did it up. Although she made it quite clear she was only keeping it on for 5 minutes, no longer and started counting. We only live 10 mins from the look out, but I was not even going to attempt it in 5. So I chose the back route, which is probably slightly longer, but its also quieter roads. My thinking being that if she undid seatbelt, I could stop the car and wait until she put it back on. Daughter got to 5 minutes, (she was amazingly accurate with her counting) and announced she was going to take her belt off. We all ignored her and oddly enough she didn't do so. When we got home, I was told we took 10 minutes and 25 seconds and that was too long. Oh the joys.
I will probably regret writing this, but daughter has been amazingly calm. I can see she is anxious, but she hasn't had a full meltdown for a few days. We are enjoying the peace. :-)
Word of warning to you all!!!
15th February is going to be a national awareness for PDA. Please be ready to help us. We will need people who are willing to share the petition, share PDA blogs and share the PDA resources page.  Please consider helping. I will keep reminding you!!

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