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Sometimes I hate autism

Posted by Sarah on Aug 26, 2012 in Uncategorized

Most of the time I embrace the side of Beth that is her autism. I love her unselfconsciousness, her massive self esteem, her photographic memory when it comes to something she loves. I also love things not to do with her autism but perhaps enhanced by it, her sense of humour and her ability to perform in front of others. But sometimes her autism gives me the shits and I hate it.

My son Bill had what’s called mudbash today, a day with the cubs that they do all sorts of activities and get really muddy doing them. A real boys day, he went with his dad Paul and I was at home with the girls. They were bored and wanted to do something so I checked out what movies are on. There are no kids movies at the moment, being mid term, so I thought the new Aussie flick The Sapphires might be a good choice. It’s based on a true story about a group of Aboriginal girls who sang (in a similar way to The Supremes) and ended up going to Vietnam to sing during the war. My girls love music and I thought it would be a good bonding experience. I also knew that my Bill wouldn’t mind missing out as it’s a bit of a ‘chick flick’. Anyway, I ran it past Beth and Bridie and they both seemed keen.

The movie started at 1.15pm and it should have been an indication when Beth decided that no, in fact she didn’t really want to go after all, unless Madagascar was playing. I explained that it wasn’t until the school holidays, that she’d already said yes, that Bridie and I were looking forward to it. Basically that it wasn’t all about what she wanted. Of course that’s not the way she sees things. We compromised on food, we took maltesers and drinks but as we hadn’t had lunch yet we got chips from McDonalds and didn’t take popcorn. That was more than fine, a little bit of an incentive.

About 1/2 an hour into the movie Beth had fidgeted so much and turned around to look at other people that I ended up giving her her Ipad. I had thought it was a great idea as this meant that Bridie and I could watch the movie in peace if it turned out that Beth didn’t like it. Now usually I try to get seats in the back row but we hadn’t been to this theatre before and it was already crowded when we got there. We sat quite far down the front so there were people behind us. After a while the man behind us asked me to turn the Ipad off as the light was distracting him. I apologized and we moved to the next row down. As Beth had had the ipad at an angle originally I made her lay it flat down in her lap so that the people couldn’t see it. She had headphones on so nobody could hear it. About 10 minutes later the usher came to me to let me know that people were complaining. I explained that perhaps it was before we had moved but she asked me to turn it off. Of course we did. I then sat completely embarassed with one arm around Beth and one around Bridie, trying to enjoy the remainder of the movie while feeling incredibly self conscious. Beth kept wanting to go, Bridie and I wanted to watch the end. As the credits rolled and Beth got ready to go I told her that we’d wait til the lights came up, just in case something fell out of my bag. Truth be told I didn’t want to face the people who may have complained, I didn’t want to have them telling me that maybe I shouldn’t have brought my child to this movie, that I was too soft, allowing a child to play on an ipad when it was such bad manners to do so in a cinema.

Eventually we left with none of these things happening. I don’t blame the people for complaining, clearly it was bothering them and hindering the movie. I was more embarassed and annoyed that it had spoiled what was meant to be a nice time with my daughter. She’s 13 now, an age where movies like that are fine. I was looking forward to going to see a movie with my girls that I would enjoy on an adult level as well as a kids level. Bridie enjoyed it with me just as she loved our naughty day off last week when we went to IKEA for breakfast and shopping. We’re starting to enjoy our bonding time, doing things that we both enjoy together. I want that with Beth too and I hate that through no fault on either side it’s probably never really going to be like that. We do enjoy our time together but solely on her terms, if it’s not something she wants to do then she’ll let it be known. And sometimes it just sucks.

 
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Time off

Posted by Sarah on Aug 24, 2012 in Uncategorized

I gave Beth a couple of days off last week. It was her time of the month and it’s always pretty bad to start with, I also thought she needed a Bethie/Mummy day as she’d been rather revolting for a few days, probably hormonal in hindsight. She’s not wanting to go to school again most mornings and does what she can to get out of it. Usually it starts on Sunday night, she’ll be coughing or holding her tummy and complaining about one or another ailment. By the Monday she has the groan included so that she sounds really sick. It’s such a shame as I know she actually quite enjoys school and now that she’s got friends it must be even better. But still, she loved her friends from last year but still didn’t want to go to school.

Beth had a curriculum day today. This week she still tried to bung on the sick noises. I told her that she had today off and that if she kept going I would send her to school today so she’d get no days off this week at all. It takes a small warning, then a big one, then the big threat. I told her that I didn’t want her telling me again or else. So she decided to try another tack. You see I didn’t say anything about talking to herself. As I’m getting changed I can hear her in the background. “I wonder which clothes I should wear for my day off today? Should I wear a tracksuit and a t shirt or should I wear jeans and a jumper?” “Beth, cut it out!!!” says I. “Hmmm” says she “I hope the other kids in the class don’t get what I’ve got, I’d hate them to get sick like me.” “BETH!!!!!” “What Mum” she says, all innocence! Cheeky bugger.

My Dad’s been staying at my sister Deb’s house since getting out of hospital, he’s going home tomorrow. Beth in her subtle way walked into the lounge the first time we visited him. “You’re not dead!” she said to him. Dad is a little hard of hearing and I think couldn’t quite believe that she’d said it. He double checked so she said very loudly and very slowly “YOU’RE    NOT    DEAD”. Well what can you say? “Yes, thanks for that, it’s good isn’t it?”

 
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A busy week

Posted by Sarah on Aug 14, 2012 in Uncategorized

Bethie hasn’t been wanting to go to school this week. I’m not sure what’s going on. She’s a bit sniffly but seems fairly well to me though she’s tired. She keeps saying that she’s got a headache, her eye hurts (because she patted the cat and rubbed her eye purposely), that her tummy hurts. Yesterday she was saying everything she could to get out of going. Miss L wont be there, they’ve told me not to come in, I’m not well, it’s a curriculum day etc etc. I had to threaten banning the ipad for an hour for her to stop. I think I’ll have to let her teacher know if it keeps going. I’m tempted to give her a mental health day off but at the same time I don’t want to play to her games. I don’t have an issue with her being home but if she’s not sick I want it to be on my terms, not because she thinks she’s conned me into thinking that she’s sick. Once again I have daydreams of her being at home with me which she’d love but that’s not healthy for her or for me and unfortunately sometimes we do things in life that we don’t enjoy.

I took the kids to see my Dad in the hospital on Sunday. It was the first time they’d seen him as he’d been in intensive care for 10 days. I’m not sure if that has anything to do with Beth’s mood. She loves hospital (as do I), lying in bed being waited on, watching tely and reading books, what’s not to love! She made herself at home in her Grandsha’s bed while he sat in the chair. She played on her ipad and was oblivious to all around her. We had to pop out for a moment, when I told Beth it was time to go back in she asked matter of factly “Is he dead?” Not sure if she was thinking of in the movies when the doctors rush everybody out only to call them back in again with the bad news. Also, I lent Dad Beth’s portable dvd player, maybe she’s thinking “well he’s sick and he gets to watch dvds all day in bed.” Who knows what goes through her mind.

Beth’s got school camp in three weeks, Monday to Wednesday. I think I’ll give her the Thursday off after that. I’m not sure if she really wants to go but I think it’ll be good for her. I will miss her dreadfully though but I certainly wont miss the driving!

 
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Flat out

Posted by Sarah on Aug 10, 2012 in Uncategorized

Sorry it’s been such a long time in writing. I’ve just been so flat out, haven’t even had a chance to be at home very much. My Dad is in the hospital with pneumonia and I’ve been going to the hospital every day after I drop the kids off, not coming home again til after I’ve picked them up. I wont go into details as it’s not my story to tell but suffice to say I’m stuffed! On the plus side it’s been lovely spending so much time with my dear old dad, we don’t often get much of a chance to catch up and now I’m seeing him every day.

Last week when Dad first went to hospital my wonderful parents in law picked all the kids up for me for a couple of days. On the second day I got home and Bev told me that Beth had been really rude at school that day, calling people names and basically just being really badly behaved. I asked her what she’d said and she told me that she’d told her teacher that she had an ugly face (which she doesn’t). I told Beth how disappointed in her I was and that she had to apologize the next day. Bev and John had explained to Beth’s teacher about Dad and she had laughed it off, I think she’s used to these kids now! I asked Beth if she was worried about her Grandsha and she answered “people die from pneumonia you know.” I’m not sure if she had been really worried about Dad or not but I reassured her that he was very sick but he wasn’t going to die. I guess I hadn’t really spoken to her about what was going on. I have to remember to explain things more. When I dropped her off in the morning I saw her teacher and apologized on Beth’s behalf. She told me that Beth had also told her she needed plastic surgery! Thank goodness she’s got a good sense of humour.

We got our new puppy Maggie today. She’s so cute! I took her to Beth’s school and she was calling out to all the kids to come and see her, it was lovely to see Beth communicate so well, clearly excited to show off our new baby.

I’ll finish with a couple of Beth quotes / funnies. Beth amazes me with her knowledge of movies. We were watching an episode of the Simpsons last night and I was curious to see who was voicing a particular character. It was Michael Keaton. I read it out loud and Beth said “Yes, of Beetlejuice fame.” I asked how she knew this as she’s never seen the movie and she told me it was her ‘movie intuition’. I asked if that was a website she looked at and she replied that no, it’s just what’s in her brain. Wow, she’s so knowledgeable when it comes to movies!

The other thing was when we were watching the diving in the Olympics. Beth commented that she loved the way they dived and how she’d love to do that. I said that it’s hard when you’re scared of heights like Beth is. She said that she’s more scared of lotes. I asked what that meant, what are lotes? She said the heights were the high ones and the lotes were the low ones! When she says these things she looks at you, almost daring you to laugh. She’s got such a dry sense of humour at times!

 
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Living in the Palace

Posted by Sarah on Aug 1, 2012 in Uncategorized

Well we’re finally in! We’ve been here about two weeks now. We didn’t have internet for the first week and I’ve been having lots of visitors coming around for a sticky beak at the new Palace so I’ve been flat out. It’s lovely and thank goodness has lived up to the dream that’s been in my mind for the last few years.

Beth as always has just rolled with the punches. She’s by far the cruisiest of my three kids, as long as she has her comforts of ipad and/or dvds she’s just fine. She wasn’t terribly impressed with the whole ‘no internet’ thing and I had to make sure that I got the date right for when it was coming back on as she did count down the days, but she coped without it. So did I amazingly, I thought I’d be lost without the internet but I actually quite enjoyed it. I got lots done and got many surprises when seeing people as I didn’t already know what they were going to say thanks to Facebook!

Since starting back at school this term I’ve had a parent teacher interview and a school report for Beth. I’ll go into more details in my next post but suffice to say I am incredibly proud of my girl, she’s stepped up so much and is much more independant and less demanding. She’s not expecting constant one on one supervision, she’s putting up her hand and asking to go to the toilet or to leave the room (mind you I didn’t know she wasn’t doing this!), she’s participating much more with the class as a whole. The overriding feel I got from her teacher though was how much they love her humour, her personality. On a Monday they have the weekend news when the kids get up and share what they did on the weekend. Beth loves this and does her news with accents and gestures, she’s very theatrical! Her teacher said that this is unusual for a child with autism, to put themselves in another character and to get up and perform. I’m very pleased with how well she has done in just the six months that she has been at high school.

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