I’m alive!

Hello everybody! Sorry it’s been so long but I know my regular readers know the reason. A month ago I had a brain tumour removed. It was an arduous process leading up to the operation, I was feeling pretty shite for the majority of the time, dizzy and nauseous. I’m happy to say that, even though my balance isn’t the best still (I have a funky zebra walking stick) and headaches are still present, I feel so much better than I did before. I am having rehab for my balancing and I can’t drive for another couple of months but I’m alive and that’s all that matters really!

Beth and I had a little trip today. I’m going to have a wee bitch because this situation has gone on since just after her 16th birthday in March and as many of you will have to go through this too I thought it would be best for you to be pre warned. We were to apply for Beth’s pension. I applied to get the carers allowance again, something you have to reapply for when they turn 16. I think I was lucky to get it as I’ve heard others didn’t. Again you have to be brutally honest. Luckily they said that ‘helping’ includes prompting which we have to do a lot of. Still, she sounded like she is totally useless with prompting for toileting, bathing and dressing. The sad thing is that she does need to be told about all of these. Toileting isn’t too bad, more of a ‘have you been to the toilet lately, you look like you need to wee’ type of thing, but still there. Showering because we have to tell her to go and have one, then I set her clothes and towel out and give her her toothbrush. If I didn’t do this she’d put her pyjamas back on and she certainly wouldn’t be choosing school clothes. You get the picture.

Anyway…. Paul and I had gone in at the beginning of April to take the pension forms in for Beth. We had been told that a letter from her school would be sufficient for the IQ side of things as it states that the school only caters to students with an IQ of 50 – 70. I had her birth certificate, medicare card  and student ID, then was told that I would need to supply copies of school reports as more ID was required. By this stage I wasn’t driving so was a little peeved but ok, I can do that. That was the easy bit. I then received a letter saying that the IQ letter wasn’t enough any more, we now have to supply copies of the IQ assessment from high school transition. OK, being the unorganised person I am I had no idea where they were so luckily the school could supply me with them too. I also received a phone call saying that Beth had to come to a job assessment appointment. If we didn’t go she wouldn’t get the pension. What the?! She happily had the day off of school and my lovely friend Cat took us to the appointment. The chap there was very apologetic, yes he knew that Beth is only 16 and at school and has autism, it’s ridiculous but it’s protocol. He barely asked her anything he felt so bad. While we were there they took copies of Beth’s school reports as our other forms of ID.

In the meantime I was feeling sicker and I went into hospital on the 24th of June to have my tumour removed. Thinking it would all be sorted I checked the bank account when I got home and no, nothing there. I got Paul to take me in to ask what was going on. Keep in mind it’s the end of July now so it’s been several months. They said the same, didn’t know what the holdup was and would get them to call me. I then got a call saying that we needed another appointment, this time in Lilydale – a good half an hour from us. This one was so that a psychologist, appointed by Centrelink, could sign off on the need for the disability pension. They didn’t need any more information other than what they already had but she needed to sight Beth herself! My lovely friend Liesl took us to that appointment this morning. (We had coffees and muffins and Beth was very happy with her hot chocolate). And again the staff member was very apologetic and asked for my permission to tell them how ridiculous it was that we had to do it in the first place. You’d think that with all their government information that they could have a little box to tick to say if a disability is severe enough to be permanent. I get it with kids that have improved so much, and what a lovely dilemma to have. I get it so that they can get the scammers. I get all of that. But if they are at a special school and if they have all the information, surely there would be the ones that they wouldn’t have to double check on all the time. Anyway, it’s all being backdated and we’re off to buy Beth a new bedroom suite on the weekend. I did however have a phone call this afternoon from them saying that they never received the copes of the school report. Seriously!

About Sarah

Mother of an autistic child wanting to write about my personal experiences
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