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Feeling better today

Posted by Sarah on May 12, 2016 in Uncategorized

What a difference a day makes! I’m feeling much more settled about things today. I spoke to Beth’s school yesterday afternoon. We’ve come to an arrangement that she is going to go 3 days a week. We’re going to look at the Your DNA media school in 2 weeks. They have said that they are pretty full at the moment. I found out that we don’t get the futures funding until she turns 18 anyway. The funding is for young adults who need extra help to train for an eventual job. Now that the school is aware that she isn’t happy and that we’re looking at other avenues, they’re going to start the ball rolling on the funding application. Then when she turns 18 in March next year she can go to either the media school or another type of training centre. She’s open to all of this and seems to be much happier since I told her that’s what we’re doing. Let’s see how she goes next week though. It’s easy to be happy when you’re still at home!

I’ve told her that she’s going to start doing jobs around the house on the days she’s home. I think it will be really good for her to learn to fend for herself somewhat. Today she’ll be picking up the leaves in the back yard. I’m going to teach her how to do washing and make her own breakfast and lunch. And put the clothes away. And, something she’ll no doubt hate, she’s going to go to a personal trainer! I went to the gym this morning and spoke to them about her. They said their exercise physiologist would be the best bet. I can claim 5 sessions with him under the enhanced primary care. He said he has worked with people on the spectrum before. Beth has really low muscle tone and poor gross motor skills. So she can come with me when I go and she can have a one on one session with Ben. I’ve told him the 2 things he’ll have to watch. One is that she’ll be very resistant to doing anything he tells her to do. The other is that she will probably ask him out! Watch this space to see how we go!

 
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A shitty time

Posted by Sarah on May 11, 2016 in Uncategorized

I’m feeling rather flat at the moment. Beth is refusing to go to school. She doesn’t seem to know what the problem is, she just hates it. Every morning she tells me she’s sick and this morning she nearly vomited with making it look like she was. She coughs and sniffs and sits on the toilet for ages telling me that she’s got the runs. She cries and yells and pleads and I just don’t feel like I can do it any more. I can’t keep sending her somewhere where she has no friends and it’s making her miserable.

I’m going to call the school today. There are packages that you can access that help with transitioning to training that will help with future employment. I know we’re told about them in year 12 for the kids that are leaving after finishing their studies. Apparently you can access these though once your child has a pension. So I’m weighing up our options. I don’t even know if this will make her happy but she can’t be much more miserable than she is now.

I’m also going to see a psychologist at an autism clinic on Monday. I’m meant to be going by myself first so if madam is home I guess I’ll just have to take her with me. The plan was to discuss her queen attitude, the one where everybody has to do what she demands. The one she has at school. Now I guess I’ll be talking about what’s next for her.

I’m thinking that, for her anyway, going to special school after mainstream wasn’t such a good thing after all. I feel like she either should have been in special all along or mainstream. Being in mainstream meant that kids pandered to her a little because they had that filter that stopped them from being annoyed by her, or at least showing it that much. Similarly having an aide meant that she wasn’t independent, something that shows up so much in special school. She’s a bitch to the other kids because they don’t do what she tells them to do. Then she says they are bullying her which probably has some truth to it. But is also probably in response to her treating them like shit.

A friend has a daughter in the same situation. She’s at home all the time now because of school refusal. What the f do we do with these kids? I don’t give in, I don’t let her play on her tablet when she’s home and in fact I’ve told her today that she needs to help me with washing and cooking and cleaning. I’m not a bad parent! But I feel so bad at the moment…

 
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17!

Posted by Sarah on Apr 12, 2016 in Uncategorized

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Well Beth turned 17 in the holidays. We did our usual catchup with Jessica and Erin who she went to primary school with. They went to the movies to see Zootopia. I let them go alone. Firstly because I didn’t want to pay to see a movie I wasn’t all that fussed about. Secondly because I think it was good for Beth to have some sort of independence, even if it really meant that the other girls were in charge. I’ve been doing that a little bit lately. Going to the gym, telling Beth she’s in charge, then telling Bill or Bridie that they are. She likes the title of older sister and boss even though she doesn’t actually do anything! She had a lovely birthday in the end. We finally got her the turtle we meant to get her last birthday, and another one added in as we bought the whole lot from ebay. So we now have new members of the family. Beth’s turtle is called Jess – from New Girl, and Bridie and Bill’s turtle is called Mr Turtle- from My Name is Earl. We are a tv watching family as you have probably already figured out by now!

Beth has been pretty good with her new exercises. She doesn’t particularly like doing them so it’s slow and steady. There are a few. There is one when she had to have her left hand and right leg out, and alternate with the others. Like marching really but more like a hippo dancing at the moment! We ( as I do it with her) aren’t terribly graceful on our feet.) She also has to breathe while doing it, in and out through her mouth. She gets confused with this breathing and smiling so when I tell her to breathe she keeps smiling wide as if for a photo, but not breathing! But she is getting better at it. And this is just number 1, they get harder. She also has to follow a pencil with her eyes, up and down, side to side, round and round, also to make her cross eyes. I think she finds this difficult, she says it makes her dizzy. Again though she seems to be getting into a rhythm and is breathing in time with the rotations. She has to tap her fingers on the table, one hand at a time, one finger at a time. Other hand must be still. Breathing AND blinking for those ones. Blinking was another difficult thing to master, doing it on cue meant scrunching up her forehead and the aim of the exercises is to have no tension. But again, she’s getting there. Last one is drawing shapes in a line. Rounded ones. Sort of like joined ‘o’s, firstly starting with the joins at the top, next like back from right to left, then joins at the bottom, then figure 8s. Never letting the pen leave the paper in each line. I was amazed yesterday. First day back at school, no kicking up and happy enough to go. Then she came out of school with a piece of paper. She had done the writing exercises during class! I never asked her to and in fact said we would do that one when she got home. We’re building up to 3 times a day but the writing one is just once a day. I was so pleased with her! There is also a meditation thingy that I have but we haven’t done that yet. I think it will be slow going but it will be worth it.

So, she’s been rather argumentative these holidays. She lost her tablet privileges once because she carried on so much. It was nothing much really but it never is is it? She was watching reruns of The Middle and Bridie sat down to watch with her. Beth kept rewinding it and replaying a line over and over so she was asked to stop and she wouldn’t. I said it was Bridie’s turn for the remote so Beth cracked it and went to her room. Then Bridie was watching it alone but Beth could hear it so she kept coming out, saying it was her turn, saying it was her show, you get the drift. In the high pitched ‘I am the boss, I am 17, I can do what I want’ voice that I love so much. So restrictions were threatened and followed through with much to her disgust. On the holidays we went to an appointment and while she was waiting her turn she played on her tablet. She saw that wifi was available so asked for the password. I said that no, she could play without wifi, we weren’t at a friends but at an appointment and she could just deal. Well she carried on for a while, even with me reminding her that I would indeed follow through with a ban if she kept going. Then all of a sudden she was quiet and playing nicely. I said thankyou and well done and she said ‘you didn’t need to take my tablet away this time did you, I was a good girl.’ By jove, I think she’s got it! Another amazing development!

I was emptying out her bag last night and there’s a notice which is for drivers ed at her school. What the? She won’t be driving, at least not until she’s a grown up in her 30s I would imagine. Friend’s kids have done it though and it sounds like a lot of fun. So I think it’s a bit exciting for her. I will play on the fact that it means she’s a responsible girl. She knows that now she’s 17 she has to step up and be an almost adult and I think she likes the idea of that. Still, I’d love to be a fly on the wall of the car!

 
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Exercises

Posted by Sarah on Mar 26, 2016 in Uncategorized

As most of you know Beth is nearly 17. For many years we tried different therapies; speech therapy, occupational therapy, allergy elimination, metal detoxification. If it didn’t hurt we tried it. We did gluten free with her when she was in kindergarten but it made no difference. Yes she does seem to get gut problems but none of the dietary things seemed to make any difference. When she started high school we decided that it was enough to just let her settle in to a new environment and, as it was a special school anyway, just let her be with her new way of learning. That, and the fact that we’d pretty much exhausted any new treatments or therapies and the money that goes with them!

Last week I was looking on facebook and came across a movement therapy. Now our Beth is not big on movement. Since I joined the gym however I’ve been seeing the benefits in movement and the brain, how it lifts mood, how it puts me in a good frame of mind for the rest of the day, a calm frame of mind. How it gives me more energy to get stuff done, whether it be physical stuff or studying. Beth loves to take the dogs for a walk and I’ve been thinking of different ways we can incorporate exercise into her life and what sort of exercises. It grounds her and I want her to do more. In fact I even considered taking her to the gym with me. Anyway, I saw this movement therapy thing and I couldn’t get it out of my mind. I called Tony who runs the program and asked him if he’s worked with kids on the spectrum. He was honest and said not really though he’d worked with a child with mild aspergers with success. I wondered aloud if, the more severe the case is, the results would be more obvious and he thought that perhaps they would. We took Beth to see him today. He showed us the way he works, he showed us the exercises that he does and how Beth isn’t terribly good at any of them. Which always gives me hope, makes me think that if she can master them then there would have to be improvement. I wont pretend that I really understood what he talked about but I sort of got it, it was all to do with motor skills and left and right sides of the brain communicating. I can’t explain it but I did get it because it made sense. So, now, finally, I have something new to write about! Jo and I are going to interview Tony for our show JAS CHAT and film some of Beth’s progress. I say progress because that’s what I believe she’ll have. Beth liked Tony and so did I. He’s local which is handy too. I think it will be a good venture all around. He can see if his program works with kids on the spectrum as well as the kids that he says he works with, such as ones with ADHD and Auditory Processing Disorder. On one of his posts on a local page a woman jumped on her high horse when I dared to ask if he’d worked with kids on the spectrum. She quickly told me that autism can’t be cured, or words to that effect. I said that I believe autism is a combination of issues and if we can help each issue then there has to be some improvement. I’ll let you know how we go. Here’s a link to Tony’s website. Hopefully it will be a whole new type of therapy for our kids. We start on Tuesday. I can tell Beth that it’s what we do after we turn 17 as it’s her birthday!

 
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Parent teacher interview

Posted by Sarah on Mar 24, 2016 in Uncategorized

Beth has been particularly trying lately. And when I say trying, I mean she’s actually been particularly turdy. For those not familiar with the term, to put it in straight talk, she’s been a right shit!

We had parent teacher interviews last week. Beth’s been having issues with a boy in her class called Jesse. She had told me last year that he’s mean to her and he calls her stupid. We had talked about it and she’d told me that he’s mean to everybody. I said that it’s not so bad when they’re just mean kids as it’s not directed at her in particular and she agreed. This year though she’s been saying she’s sick more often than not so I asked her if she was getting along ok with the other kids. She said that Jesse and her were on the same bench in cooking and he’s still being mean.

The week before last she had said that her heart was hurting at school. They called me and asked if there was any predisposition to heart issues and I said no and that we had been to the doctors and got everything checked out. She had had an ear infection the week before and the doctor had checked her heart and said it was a bit fast but probably because of the infection. We had been back and told it was ok but she had a sore chest. The doctor said it was probably inflammation due to the infection and Panadol would do the trick. We’d also gone to the osteopath to make sure it wasn’t her ribs due to posture so got it fully checked out. Anyway, she’d figured the heart thing out and told the school that her heart was sore. The issue was that she was incredibly rude about it. She demanded ‘call my mother and have her pick me up immediately’! She also demanded that they gave her books to read in the sick bay. When told no she cracked it. All in her horrid high pitched ‘I am the queen’ voice. They did ring me and I told them that there was nothing wrong with her so she stayed there. And found the first aide books and read them!

Anyway, at the parent teacher interview we discussed Jesse and how Beth tends to get a bit obsessed with people and things they do that annoy her. The teacher positioned herself where Jesse would stand where Beth said he ‘just keeps looking at me’ and pointed out that Beth wouldn’t know this unless she turned around to look at him in the first place. He obviously has realised what buttons to push with Beth and she’s reacting and is now annoyed at everything he does. Then there’s her attitude to the teachers. When given a tub of icing and lots of choices for decorating her cupcakes she promptly tipped the tub on top and said she was finished. When told they didn’t look like the ones made by the visiting teacher she said that hers looked much better than the nicely decorated ones. When the teacher pushed it Beth told her that she didn’t know what she was talking about and that Beth was the expert! When confronted with the news that I had been told ALL about her behaviour and that I would be told in future she wasn’t terribly happy as she knows there will be consequences. I did ask if she is finding being on her feet a bit of a strain all day for the 2 cooking days a week. Her solution was that they supply her with a wheelchair!

This morning was a doozy. It’s the last day of term and she thought I’d give her the day off. We had one of those mornings where she just kept going and I got angrier and angrier. She did things like having a shower and going to put her pyjamas back on. She doesn’t let go of an idea and kept insisting she was sick with a chesty cough even though the only time I heard it was when she did it when telling me about it. When we left the house she shut me out and said goodbye. She lost her Samsung tablet for the car ride as I had told her to be quiet. Then in the car she went on and on and on. When I told her to stop talking to me she seemed to invent an invisible friend. Usually when she talks to ‘somebody’ else it’s her fly Cuddly or her spider Leggy but there was nobody there. She kept talking about me in a quiet voice. Things like ‘maybe next time she’ll believe me’. Or ‘she’ll let me have the day off next time.’ This went on and on and I kept getting madder and madder until finally I snapped and swore and told her I didn’t want to hear her voice talking to anybody for the rest of the trip. I took a sip of my traveller coffee and as I did I heard her whisper ‘she’s thirsty’ to whoever the hell she was talking to about me!

 
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Year 11!

Posted by Sarah on Feb 5, 2016 in Uncategorized

Sorry it’s been a while. (I seem to start most of my posts like that these days!) I can’t believe it’s February already. I also can’t believe that Beth is in the equivalent of year 11!

We had lovely holidays. They were nice and quiet as we didn’t do much. The kids are of a lovely age where they entertain themselves for the most part. Bridie still finds it all a bit challenging and needs a bit more, but Beth and Bill would be happy if I just let them play and watch tv all day. Which for some of the time I must admit I did! If we did go out they’d often want a jarmie day the next day (wearing their pyjamas). Paul took the younger ones camping for a couple of days so Beth and I had sleepovers and ate pancakes and lasagne. So not much to report really.

She’s doing essential cooking this year for her VCAL subject. Not that she’d ever let me know but I think she quite enjoys it. She seems happy to go off to school and happy to tell me what she’s done while there. They don’t start their actual cooking until next week. From Monday they go shopping to Coles and buy the ingredients they need for the rest of the week. I told her that my friend’s son did this subject last year and they went to Sydney for their camp and surprisingly she seemed quite excited about the prospect. Considering that she hasn’t been on camp for the last three years I consider that to be a huge step in the right direction. Unfortunately she’s had a cold most of the week so yesterday when cooking she had to sit it out. I ended up keeping her at home today which was a bummer because I was to return to art class and piano lessons this morning. Still, it’s nice to have an enforced day at home with my big girl.

We went to the dentist in the holidays. We go to Smile Place in Tecoma for anybody that may be looking for a dentist in the Dandenong Ranges. They’re amazing there. So, so good with Beth, and with a scared old mum like me who needs work done too. All the kids had checkups and all were clear, except for Beth. We were told she needed a filling, and a big one too. So big that they scheduled an hour appointment just for her. Last week off we went and she was good as gold. She wanted the pen thing that they can click on the jaw to make it seem numb. Unfortunately they had ordered it in but it hadn’t arrived. She’d clearly gotten wise to the fact that even though the fairy juice was in the syringe it wasn’t just going to be dripped on to her gum but rather be given to her as a needle. She said no, there was no way she would have it, she’d rather have the filling done with no pain relief. And she did! It took quite some time but she preferred that than the alternative. I was amazed. They said that often kids with autism feel things differently. Things that barely hurt others can be extremely painful in their minds. And other things such as a broken arm or something else serious can barely register at times. I was so impressed with Beth as she handled it beautifully.

We had a funny incident last week. For some reason there was a bus running late who pick up from the same bus stop as Beth’s in the morning. Beth got on this bus so I was told, and some of the other kids went to also, but got her off of it. Paul dropped her that morning and was explaining that it was a new bus driver on that bus so he wasn’t sure of the kids he needed to pick up. When speaking to a friend though, I got the full story. Being a new bus driver he had his clipboard ready and asked Beth if she was on the role. She apparently took his clipboard and said ‘oh you’re new here, let me do the role for you, I know all the kids names!’ When told to get off the bus she then took the clipboard too. The poor driver must have wondered what planet he was picking up from! Serves him right for being late I suppose!

I’ll leave you with a Beth funny. She’s been really quite amusing lately and a bit cheeky. She was running up the corridor and I told her to stop and walk. I asked her why she was running and she said ‘You don’t have to interrogate me you know, you’re not a cop!’ Cheeky bugger!

 
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Forgetting

Posted by Sarah on Nov 23, 2015 in Uncategorized

Sometimes I forget that Beth has autism. Not fully, not ever fully. It’s pretty bloody obvious at times. I don’t have an issue with her having autism. I’m always telling people she’s the easiest of all my kids behaviourally. She’s well behaved, she’s got lovely manners, she does as she’s told. We seem to have missed out on most of the teenage hormones. She’s not violent. She’s not mean (usually). She’s a nice kid and I love her to bits. Then we have moments like today and I remember. I remember all the meltdowns and the embarrassment of some of her behaviour and how she acts like a 2 year old having a tantrum in public and I think ‘how could I have forgotten this? Why can’t she just behave like a bloody 16 year old? I hate f’ing autism sometimes. ‘ I’m not proud of myself when I think things like that. As I say, she’s an ace kid and I’m incredibly proud of her. But sometimes……

We had a nice time yesterday. I was to take Bridie Christmas shopping and Beth decided she wanted to come along. Much to Bridie’s annoyance as she wanted to have a ‘2 girl day’. Bridie had money left from her birthday and she wanted to spend it. We also had some things to buy for their little cousins and I told Beth that she could spend some of her pocket money. As usual she wanted to buy Disney dvds. She has many of them, if she can’t find one she wants to replace it. She also picked a few out a couple of months ago when they were on sale, so I let her have 3 and kept 4 for Christmas. So I don’t really want her to buy dvds at the moment, until we’ve done a bit of a stock check. Anyway, we went shopping yesterday and ended up buying everything that Bridie wanted and one dvd for Beth which I knew she didn’t have so we were all pretty happy with that.

The problem that we had was that the toys we wanted to buy the cousins for Christmas weren’t available at Knox K Mart. Which meant that we were popping in to the Boronia store today, after our osteo appointments. Bridie had a curriculum day today and I gave Beth the day off too because our favourite osteo is leaving and it was the only time we could all get an appointment. All good, nice girly day again, giving Beth a treat of a day off. Our appointments ended at 11 and off we went. I had specifically said we were going to buy the Christmas presents only, that we weren’t having lunch out, that we weren’t shopping for ourselves. Then we got to K Mart and Bridie started. She was hungry and whinged most of the way around. I said we just had to get this and that, we were parked in a half an hour park and if we were really quick I would stop and get them pies on the way home for being good girls. Then it was Beth’s turn. “You mean after we get me a dvd don’t you?” “No Beth, I said we’re not getting you a dvd today remember?” “But I have money, I still have pocket money, today’s about me too!” And the loud crying started, and the wailing, and the snotty face and the screaming of why was I being so mean, why was I not talking back to her, I was ignoring her and it wasn’t fair! And the stares as I stone faced pulled her along behind me as I got what I needed then got the f out of the store! It reminded me of when she was two and didn’t get her own way, in the very same store. And how mortified I was. The only saving grace was that at least now it was pretty bloody obvious that there was something different about my girl because the only way she didn’t look like a two year old having a tantrum was that she didn’t lie down on the floor and kick her legs in the air. I threatened and I muttered under my breath and by the time we got in the car she had been banned from her tablet until 3.30. And still she didn’t shut up! She doesn’t seem to know how to.

The car ride home was vile. I had Bridie cracking it because I had said no pies. I had Beth who just wouldn’t stop. I would say stop talking to me, I want silence in the car on the way home, if you keep going it will be another half an hour. And still she kept going. In a waily high pitched voice. “I promise, I’m sorry, no more ban, stop banning me, why are you angry, I wont do it again, just tell me that I’m not banned.” And the true doozy of the day “I’ll try again tomorrow, maybe tomorrow I can have the day off again and you can take me to K Mart again and I’ll be good. AND you can let me spend some money!” I just got angrier and angrier and wanted her to just stop talking and she just kept going and going. Even when we got home and I told her she could go and read a book she said things such as ‘or play on my tablet’. I (and here’s where I’m not proud) told her that she could go and live with Grandma and Grandpa if she kept it up. By that stage I just wanted her to shut the f up and she just wasn’t. When I went in to check on her she’d put all of her bedding in the wardrobe and was sitting in there reading. Making me feel really bad! She’s just popped out now though and said ‘It’s like a curse you know, this ban that you do to me!’ So maybe I don’t feel that bad after all!

 
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You Tube!

Posted by Sarah on Aug 21, 2015 in Uncategorized

I’ve started a new project which I’m very excited about. As my regular readers would know I’m not adverse to a bit of fame here and there! One of my readers and I have become friends over the last five years, via emails to start with and now face to face. We decided that it would be great to get more information out there to the big wide world on our wonderful kids and what people could do when getting a diagnosis. I know from my experience that there wasn’t much information when Beth was diagnosed, lots of things I found out about was from me ringing around and searching for what I thought we needed. I know there’s a lot more now, due to more community awareness and more kids being diagnosed, but there are still people out there who haven’t been told much. We wanted to share our experiences, whether it be on current topics in the media or on toileting issues or food intolerances. Let’s face it, we’ll never run out of subjects. And I’ll never run out of words!

Anyway, for those of you interested, our You Tube channel is here. JAS CHAT .  This stands for Jo and Sarah’s Crazy, Honest Autism Talk. And our facebook page is here. This will keep you updated as to when we put up new episodes. If you’re lucky we might even have Beth guest starring, a bit like the blog’s Beth funnies. I thought we could have an ask Beth segment where people could write in and ask her Disney trivia questions. She’d love that!

Beth is going well. She’s gone off to school today saying that her throat is sore. I’m not sure why she hates going to school so much, she does fun things. Even this morning, she tried to bung it on and I told her that she’s only got one day left this week, that tomorrow is the weekend, that she had a good day planned. She smiled and admitted, she has cooking and girls club which she enjoys, it’s almost like she still has to pretend to be sick though! Her school report was very honest, reflecting that she knows how to work but she chooses what she wants to do. So I don’t think she’ll do media studies again next year. She loves watching the movies but can’t be fagged doing the reports on them!

Due to me not being able to drive, the kids have been very adaptable and have been getting lifts from various people. I am very lucky that my friend’s son also goes to Beth’s school, and they live close to Bridie’s school, so they pick Beth up with their son and drop her back to the primary school which is means I just have to get one lift for my girls. It’s been wonderful and very convenient! Paul drops both girls off in the morning (Bill walks) and they get brought home, by friends, by a teacher (also a friend), by family, we’ve been incredibly lucky with our support. One day my friend’s son came home after cooking gingerbread men, and he gave his mum the head of one, saying that was all she could have. Beth came home a few days later with her gingerbread man and gave me the head too, explaining that if that’s all that Bree got then that’s all that I would get too!

To add in to the complication of transport, Beth now goes part of the way on a bus. We drop her in the mornings at 8.20am, she catches that bus to school, then she gets dropped back at the bus stop at 3.20pm, so it all fits in quite well with Bridie’s school. We can drop Bridie second in the mornings instead, meaning that I can go to assembly again, something I’ve really missed doing as I always have to drop Beth. The bus drops off closer to Bridie’s school so it’s not such a long drive, and not such a time consuming one either. I was leaving just after 2pm to do pickup, now it will be just before 3pm. And I’ll be home before 9am in the mornings after dropoff. Actually, I quite like the way it is now, I rather like not driving! We decided that Beth could leave her tablet at home rather than taking it with her and playing on it in the car. We were a bit worried about the bus side of it. Now she chats away in the car about her day and tells me about the drive when she gets home. She is rather taken with my friend’s oldest son Naarai and excitedly told me that he drove her last week in their Jeep. Might have something to do with the Jeep ad on the telly at the moment.

 
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I’m alive!

Posted by Sarah on Jul 30, 2015 in Uncategorized

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!

 
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2 more sleeps til op

Posted by Sarah on Jun 22, 2015 in Uncategorized

I thought I’d pop in quickly and say a few things. Beth has been rather hilarious lately and I didn’t want to forget what she’d done. As often there’s not much to tell on here it’s nice to share how funny she is when it happens.

My friend had a brain tumour taken out a few weeks ago which was ridiculously coincidental! She put photos of her bruises and scars on facebook so I took the opportunity to show the kids what I could possibly look like. I think mine wont be as bad visually but will be worse in other ways. Bree didn’t have any of the potential side effects such as facial paralysis and her tumour was further forward in her head than mine. That means that she ended up with a swollen black eye that wouldn’t open for the first day. Her scar was pretty impressive too. 30 staples going from the middle of her head down towards her right ear, very neat and even, for those OCD people like myself. The kids freaked a little but then bit by bit asked about seeing them again, along with update photos, which got better nice and quickly. So I am planning a similar recovery. I am thinking the paralysis however is a very real possibility. I was told that my mouth could be turned down as if I have had a stroke, that my eye might look startled, that my whole right side of my face might be affected. I was explaining this to Beth. I told her that I had started dribbling all the time out of the right side of my mouth, this indicates to me that I may have problems there and be dribbling a lot more. “Like a dog?” she asked. Yes darling, just like a slobbery old dog!

Beth’s had an ear infection for the last few days. Again, it just goes to show that we don’t really know what’s going on in her mind. It wasn’t until we went to the doctors that I realised that she thought it meant she has a brain tumour too. My right ear has been affected and loud noises actually hurt. Like Bridie cuddling me then yelling out to others in the other room. All the time…..  Beth knows this is she is on the other side of Bridie so she hears me saying that it hurts my ear. Poor love, thinking that she had to go through it too.

She’s also been rather whingey lately. She’s 16 now, I guess it was time for the repulsive teenage attitude to come. Bill already has it at 13, Bridie has always had it to some extent! Yesterday was a doozy. She asked Paul to take her to the movies and he said no, they could go in the school holidays which start on Friday. She wanted to go yesterday though. She puts on her Veruca Salt voice when not happy. (I want it nooooow)  It’s high pitched and pretty horrible. And she does the quivery lip. I have been playing up the ‘you’re 16 now, you’re going to be the oldest girl in charge while I’m away, you have to set a good example.) Which when she’s in a good mood she’s all for. But when tantrumming that all goes out the window. Yesterday I said that grizzling really wasn’t attractive for a 16 year old young lady. Her response “What about whinging, is that attractive?!” She kept going on about the movie and I told her she would lose ipad priveleges. Which, every time I say ipad means that she has to correct me to tablet. Because she doesn’t have an ipad anymore, she has a tablet and get it right mum! So she was banned for one hour, then two. She kept speaking as me in her Veruca voice. “It’s ok Beth, you’re a good girl, you wont get banned, don’t worry. And you can go to the movies!” It went on and on and on. At one point I said that she’s 16 now, she needs to try and regulate herself. She was lying on her back so she lifted up her legs and put them over her head in a pilates style post. “Like that” she wails, “Like that?” I popped out for a little while and when I came back she had a bandaid on her inside arm. The first thing she said was “It was an accident” which she reiterated several times. She said she cut herself shaving. I don’t know how you accidentally cut the inside of your arm with a shaver but she seemed to do it. I do trust her with it, she shaves her underarms in the shower and has done for a few years now. Maybe she was proving to me that she is a big girl, who knows!

Before I sign off I shall tell you a little titbit of exciting news. A long time reader of this blog, Jo, has been writing to me for about 5 years and we’ve become friends. We have been in discussions for her to become a sort of agent to me! I wont say any more but I am expecting big things in the future and I’m very excited! It came at a perfect time, I was having a feeling sorry for myself day, missing dad, worried about the op, feeling all weepy. Then I got a message from Jo and it got me all excited about future possibilities. Now I just need to get over this pesky op and the world is my oyster! Watch this space! See you in a few weeks xxx

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