Keep fighting

I have now heard back from MP's office and they asked what had happened since the inclusion panel meeting! I explained the situation and the secretary asked why Amira couldn't be placed in the Independent School until the statement was completed? I said she would have to ask NC Council that as I had already asked and they just told me that was not an option! I also would only want her there if they were going to keep her there permanently, after all I don't want her moved around and passed from pillar to post. They promised they would ring me back on Friday.

True to their word I heard back from the office on Friday afternoon, although it was a different person they did know some of Amira's story! I however decided he should be filled in on the entire situation. I was at work and was on my lunch break and in the outdoor smoking area surrounded by colleagues. They could tell who I was on the phone too and could see how agitated I was getting as I was being told that, with the Bank Holiday weekend I wouldn't hear back until at least next week as they were trying to speak to the council and find out what was going on. As I explained I do understand the council have their processes, however. how can they allow my daughter to slip through their red tape? I am not asking for anything more than what she is entitled to.

I admit after coming off the phone I felt lower than ever. If the MP's office cannot get anywhere with the council how do they expect anyone else too?!

I have sent an application off to the Houses of Parliment to start an e-petition for the Goverment to change their process and give parents a step by step guide. Listing all departments and contact details for every step. Problem: it will need 100,000 names to get the petition even seen by the House of Commons! Hope I can rely on everyone to sign?

On a personal note, my sister asked me yesterday if she could take Amira with her to Church last night. My nephew has his First Communion on the 16th June and we wanted to get her used to going to church and know what to expect. It started with Amira refusing to go without me and of course Tariq was not going to let us go without him! We took crayons, colouring book, books, juice and crisps and off we all went!! I was nervous before we even got there, warning my sister that if she starts then we will just have to get up and go. My sister in her very laid back approach told me everything would be fine and not to worry, everyone there would just have to accept Amira as she is and they did make us very welcome. I didn't expect what happened though, Amira was a little anxious, hiding under chairs when the singing started, cupping her hands over her ears! She then climbed out from under the pew the opposite way between the ladies in fronts legs! My sister caught her that time and she took her out the back to the kitchen for her to chill out a bit. A few minutes later they were back but not for long as she broke free again this time she was on the alter! Squealing and laughing! Sticking her tounge out to the congregation "you cannot catch me! Na na na na na!" Amira then started trying to blow all the candles out! Aaaagggrrrhhhhh!! The priest never even flickered, the congregation barely batted an eyelid and we finally cornered her. Back at the seats with Amira colouring in quite nicely the singing started again! Under the pew she went! This time she was calm and I listened to the words. My tears just started to flow. I couldn't hold them back, I was now sobbing unable to stop myself. I was part angry with God, part embarrassed. The anger was winning, I wanted to know: why my daughter? Why had God done this to her? What had she ever done? Was it me? Am I paying for some sin? I started praying for Gods forgiveness and asking for his help! Please help her, give it to me. I would do anything. He could have everything. I would be here every day if he could just help her. Take my life for her to have a chance at one. Please God, I know you could.
My sister saw me crying and kept asking what was wrong? I'm think she thought I was just embarrassed at first and upset at Amiras behaviour. I am fully aware of how Amira would have behaved. She is always like this, she especially loves a stage to perform on! I am prepared for a life of not being able to go places and I am aware of the looks and stares you get when you do go! People always assume that she is naughty and I should be taking her in hand. It is a normal assumption, I know that. However, Amira really doesn't mean any harm. There were now tears running down my sisters face too and my sobs were getting louder. Tariq saw my face and I had to suck it up. How pathetic was I? What a hypercritical person I am. I don't go to church like my sister, or mosque like the kids dad does. They both go once or twice a week. Doesn't make me a bad person though! Does it? I am very charitable. I help out lots of causes! That has to help my plea to God surely?? When I was told Amira's diagnosis I kind of lost my faith (CofE) my sister is Catholic and the kids father Muslim. I was happy believing but not worshipping. Never even had my kids baptised! I was angry when I found out and this was my first time to have a shall we say "Showdown" with the big man himself!! I suppose it has proved one thing to me though, I obviously still believe, no matter how angry I am, and don't understand still, why!

I am just so tired now, I don't think I have that much fight left in me, but I have to! I will not give in, I will not lie down to council policy, I will never give up on my daughter, I will not stop trying to change ignorance and I will not stop looking for a cure! Something has to change with UK procedure or some one has to give in and I assure you all it will not be me!