All quiet on the north easterly front!

Well, since my last post I have had just 2 phone calls from the local MP's office, I was eventually told that they would ring me back after the Jubilee! Goverment and councils ALWAYS get their holidays! I have still not heard anything!!

I have now resigned myself to the fact that they are just not bothered at all and Amira is only one child in their vast constituency! However, they have not factored in for the one big mouth of her mother! My sister and I have been busy contacting lots of different people, including the papers (local and national) and radio stations and so far only the BBC Radio Newcastle have come back to me. We are just awaiting a follow up call on this for now! I also have now come to the conclusion that Amira will not be in any school until Sept/Oct time and there is not a damn thing I can do about it.

I just have filled out the never ending paper work to claim benefits for DLA (Disability Living Allowance), it will be 8 weeks before I will hear back from these. I have to say, as anyone out there that has filled this in will testify, this form breaks every mothers heart and puts it out there in black and white what your child can and cannot do! Horrific to read back! I actually received the forms back in May but waited and waited to fill them out as I didn't think I had it in me to actually complete! When I finally did I really broke down, this cannot be right, surely the Goverment know from clinical documentation and diagnosis who is entitled to what, do they really need the parent to spell it out too, in such graphic terms?

Without the DLA I will not be able to claim carers allowance. This is to help compensate for the amount of time I will sacrifice from work unpaid. I have been told I would actually be financially better off not working, but in all honesty I would really miss it! My work is my sanity, my social life and my way of giving back to the community and to charities, I love helping people and organising things. There are not many people who get to do a job from which they get such satisfaction, but I can honestly say I do and I am proud of it. Even if at times I whinge and moan about being tired and would just love to go to bed. If I didn't work I don't think I would ever pass the doors and do very much at all. I am aware that I have no life, I have a very solitary routine and although I am usually surrounded by people, I am very very alone. I sometimes feel that no one can truly understand how I feel as they are not in my position. I know I should speak to other mums. Anyone who knows me would say that I am be an extroverted person and by no means shy, they would be right, but where my feelings are concerned I tend to "keep my own council!" as my nana would say and bottle things up! No wonder my skin is as bad as it is. How many mums would understand when you say there are times that you wish that you had never had your child? That you wonder if they would be better off with someone who can look after them properly because you feel that you are not doing a good enough job. For christ sake, surely it's just the basics to put your child into school, stop them for hitting, biting, scratching etc! I can't even do that. Even Tariq now finds that when things are not going his way that he can just lash out. The guilt I feel for even having that thought in my head for a split second consumes me and makes me feel like the worst mother. I am so tired yet I cannot sleep even when she does. I am alone, and have hit a brick wall with government and council. I have another 3 months to go and I'm afraid the light at the end of my tunnel has gone out.

An update on Amira:

Unfortunately, as I feared things are getting worse. She now has violet outburst more and more frequently. My sister took her and Tariq out to a cafe and they behaved beautifully but as they went to leave she had an outburst. My sister was not sure what triggered it but was suddenly aware of the amount of people staring as she had to pin her down in the middle of the entrance, trying to move her to the side so people could get past. The passing comments of just leave her she will soon stop, or the looks off disgust that you cannot control your child. I've even had some tell me that a good spanking would get that out of her! Everyone is so quick to give there opinion, especially when autism has no physical symptoms!! I wonder if my sister now realises why I don't go out very often without someone else with me! I hate the stares and the comments as I feel ashamed and embarrassed, that my child can cause such an uproar, that she can bring a whole shop to her gaze. I held a big community event a couple of weeks ago and it was an outdoor thing with a few family members taking part too. My mam & dad brought Amira down to let her see all the stalls and to play in the playground. Unfortunately, Amira turned for no reason on another child, scratching down her face. I was mortified! The mother of this child works with me and I quickly offered my apologies and she already knew of Amiras condition but that still does not make it ok for Amira to do that. I still believe in trying to teach her that it is wrong. Amira was taken home. As soon as I got in I sent the child's mum another apology and she accepted it gracefully although I still have avoided her at work due to embarrassment on my side.

My nephew had his first holy communion last weekend, a very proud moment that unfortunately I was unable   to see as Amira went into melt down that morning and was not getting ready without a fight. It started at 10:20 we eventually got there at 12! I was sad to have missed it and felt that I had let my sister down. When we got there Amira was fine and at the party afterwards she was a little minx going places she wasn't meant to etc! But, luckily there were a lot of people there that had read this blog and knew her by sight. Very kind and considerate faces so I was not embarrassed when she ripped her dress then sat on my knee refusing to move! Pretending to be asleep!!!! Mammy knew better, every time I tried to move she would hold on tighter and refuse to move. When it was time to leave she was straight up and wide awake.

Lately Amira has had an outburst nearly everyday and has gone down to 30-40 mins sleep in 24 hrs! I am so tired I often cry for no apparent reason, I comfort eat and smoke to keep me going! Amira has now started wetting herself to, I am not even sure why! This has happened 4 times in the last week and it is very unlike her, I am wondering if it could be because she is feeling my stress. On the plus side Amira is now more loving than she has ever been asking for hugs, squishes and kisses, sitting on my knee and squeezing me so tightly. This morning she even cried when I left to take Tariq to school. Very uncommon! I took her up to the school to collect him and she even came to the gate without any problems, however, when I went to collect my sisters children from school the outburst started again. Kicking, nipping, biting and scratching me. Finally, I just had to put her over my shoulder and carry her there! When we were in the closed yard I asked one of the other mums to watch her whilst I went inside for my sisters youngest, she sat on the floor and cried, I was gone seconds and when I can back she and the other mum were gone! I started to panic but found her sitting on the playground yards from the nursery yard crying her eyes out. The other mum was nowhere to be seen!! I then piggy backed her and had the 2 younger ones by either hand the eldest following behind. When we got past the gates the 2 younger ones chased each other down the street and straight over the main road I screamed and luckily there was no cars on the road at that point! I just could not keep up with them whilst carrying Amira at the same time.

I am now entirely exhausted, my mam is in hospital at the moment and has just had her foot operated on and will now be out of action for the next 3 months. She does so much for me I know this will be a hard time, but, we have done it before when she had the other foot done last year so we will, I am in no doubt, manage again.

I will of course keep you all informed of any further info as it happens. Please feel free to add any comments or tips below. Thanks again for reading, as I have said I truly believe that people can make a difference and I am still holding on to that hope, so keep sharing this with as many people as possible if you can, maybe it will eventually reach someone who can help us or be of use to another family going through a similar situation.