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A friend called Justin

Posted by Sarah on Jan 29, 2011 in Uncategorized

Just a little funny thing that happened today. I took the kids around to Bev and John’s house for lunch while Paul went sailing. Beth likes all sorts of bugs and tries to sneak them around whenever she got the chance. When caught out she blantantly lies about it too, going against the belief that autistic kids don’t lie. Bev and I caught her lying on the bed with a snail this afternoon. We asked her why she said she had a snail in the house and she remarked that it wasn’t a snail, it was her friend Justin. I’m assuming she named it after Justin Timberlake. Not because of his singing but because he is in Shrek 3 and also in the recently watched Yogi Bear.

After taking Justin outside for a play on the trampoline Beth was stopped from bringing him back to the house. She then wanted to bring him home with her. I told her that he would miss all his family if he was brought to a new house where he didn’t know any other snails. Eventually she popped him on the table and went off, coming back with another snail. I asked her who her new friend was. She told me that her name was Fion. Rather than being pronounced like Fiona without the ‘a’ it was pronounced like the singer Dion. Before I could ask her anything else she told me that Fion had no family, no parents and no children, she was just a snail by herself. Obviously this was her way of bringing her home. When it was time to go she took both Justin and Fion, telling them that she’d found a lovely big rock for them. I heard her tell them as she put them on “This rock will be nice and romantic for you!”  And they say kids with autism don’t have imaginations!

 
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Bill’s birthday

Posted by Sarah on Jan 28, 2011 in Uncategorized

Paul went back to work this week. I was feeling really good but this week am feeling a bit ordinary again, I suppose it’s because I have to do the stuff that Paul had been doing. Not much but even just looking after the kids takes it out of you. I have to go for an echo cardiogram on Monday as my heart rate is still up. I’m expecting all to be ok, just a leftover thing from the pneumonia as I had it pretty bad. Looking forward to the kids going back in a week so that I can rest up a bit.

It was Bill’s 9th birthday on Tuesday. We had friends over on both Monday and Tuesday so that kept the kids busy. We always do a treasure hunt on the morning of the kids birthdays. That’s something that I loved when I was a kid, mum would leave one present on my bed and it would have a clue to where the next one is and it went on from there. With my kids they all have to be up and they bring them in to my bedroom or the lounge and open them in front of all of us.

On Wednesday (Australia Day) Bill had his party. He invited  friends to go with us to see Yogi Bear in 3D at Knox, followed by lunch at Hogs Breath. Well, if ever I was in doubt about wanting more children, that day made the decision for me! Not that they were badly behaved, boys are just sooooo loud! Paul had them in the car with him and I met them there with the girls. Will (who also has autism) was one of Bill’s friends and he was hilarious. He left his shoes in the movies and had to run back and get them. He also tried to tell me that when the movie ends they were all supposed to run down the front, get up onto the stage and play with the curtains! I talked him out of that one. For the first time ever we were the only ones in the theatre. All the kids were great so it didn’t matter.

At lunch they were all trying to outdo each other. When I tried to ask them to tone it down a bit, Will let me know that he always talks that loud. Stevie kept getting ready to eat, then decided to talk some more so in the end I had to be bitchy mum and tell them all to be quiet and eat their lunch. All the boys had to smell each others breath after each mouthful. Paul found a cockroach in his lunch which was vile, then Bridie got locked in the toilet. It was horrible too, I sent her off by herself for the first time ever, then as I was going to see where she was, all I could hear was her screaming for me to help her. I had visions of her being trapped with some pervert but the lock had stopped working. They had to break the door down. Poor love, she was so scared. Finally, all apologetic, they brought out the icecream with sparklers for my Bill. They all sang happy birthday then Will stated proudly that he loves sparklers as he makes explosives out of them! I got home and called Bec laughing and exhausted.

Beth has been pretty good throughout the week. She’s still been a bit argumentative at times. We went to the school today to pick up the books for next week’s start and of course hers were for grade 6. Her aide was there and asked if she was looking forward to it. To give Beth credit, she didn’t stick her fingers in her ears and just said she didn’t know. When we got home however, there was a letter from the principal for Beth, talking about grade 6 and leadership roles that the kids would be taking this year. Beth wouldn’t let me read it to her or read it herself. Basically she wanted nothing to do with it. It’ll be interesting next week to see how she goes in grade 6. I think she’ll be fine once she gets there, it’s the unknown that seems to worry her. I dread High School soooo much!

 
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Bee Movie

Posted by Sarah on Jan 23, 2011 in Uncategorized

Just had to write as I listen to Bethie. There must be a part on the Bee Movie DVD where they are interviewing the characters in the movie. These questions are written, then they have them answering them out loud. Beth is playing the part of the interviewer. Beth ” Barry, what’s with the black and yellow jumper?” Barry (a bee) answers something back about why he has the black and yellow stripes. It’s as though Beth has written the interview. She even pauses it after reading it to give Barry time to answer! I’ll have to film her doing it if it doesn’t make her too self conscious, it’s hilarious.

It also has a part on it where the favourite scenes from Pixar movies are on there, including songs, right up Beth’s alley. She has taught herself to click her fingers and counts time to the music while doing this. I always thought you could either click your fingers or you couldn’t. I can’t do it. Maybe I’ll have to get Beth to teach me!

 
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Flat tyres

Posted by Sarah on Jan 22, 2011 in Uncategorized

I had to share a bit of a giggle with you all. As you know my friend Bec has a son who’s autistic too by the name of Will. He’s my boy Bill’s good friend. Last night Bec and I were at our friend Michaelas house for an Intimo party and girly catch up and get together. As I haven’t been out since before school broke up I really enjoyed myself as did all the other girls. Bec has a 4 1/2 month old – Angus – and he was the only one of her children she brought along, leaving her others at home with her husband Emmett.

Bec left the party at about 11.30 last night. At about 11.45 my mobile phone rang and I thought it must have been Paul calling to ask where I was. It was Bec calling to say that she had a flat tyre. I asked if she wanted one of us to come and help out but she had called Emmett. He had to wake the kids up to come and change the tyre and get her home. When they had gotten there she commented that she had no idea why her tyre had gone flat. Will piped up with “I know why Mum, I’ll show you.” He then proceeded to take the little black thing from where you put air in the tyres. “See, I put a bit of bark in here!” It had made the tyre slowly go down. Bec thought it was hilarious and thought she’d call and share it with me. You have to laugh at these things don’t you, otherwise you’d be in tears all the time. And as a little bonus, I could here him yelling at Bec for calling them and making them come and get him. Gotta love this life!

 
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Appointment time January 21st 2011

Posted by Sarah on Jan 21, 2011 in Uncategorized

Finally our appointment at the paediatrician came around. For those of you who don’t know, we decided to put Beth on the mini pill a couple of months ago after shocking mood swings and behavioural problems at school and at home since Beth started her period. I went to the doctors on her behalf who decided that, due to the fact that we couldn’t get an appointment for so long, we would put Beth on the mini pill and have it reviewed when we had our appointment. I was worried that if I had to wait until now to do it, we wouldn’t know whether Beth’s behaviour was because she had just started a new school year or because of hormones. Starting a new school year could of course make Beth anxious and we wouldn’t know which one it was. At least if we started it then I could let the paediatrician know if it had worked or not. (It did.)

As usual our paediatricians appointment was like the health centre visits that we had when the kids were babies. We don’t go to our bi yearly appointments for this very reason. He measures her (173 cm), he weighs her (53.3 kg), he checks in her ears and looks in her throat. The only difference is that the health sister doesn’t charge $150. This time we did a bit of talking though and questioning (on my behalf) so I guess it was a bit different. He didn’t have an issue with Beth being on the pill. In fact although I was happy enough with his decision I did find it a bit uncomfortable. He made it clear that when a child has severe problems understanding her periods, an extreme child in Beth’s case (his words) then there are no issues with putting her on the pill. Even though in some ways Beth would be considered severe, I don’t like hearing it in such black and white terms. I did tell him how she had actually coped with her period very well and that besides the mood swings I really wasn’t worried. And it’s not like it’s removing the problem all together so I don’t really get it. Is her physical wellbeing not as important because she’s autistic? I don’t think he meant this at all but I did find the whole decision to be a bit blase. It’s not like it’s going to stop her from having children or anything like that but once again, if it did, would they be as flippant about it or would they think to themselves that it might be for the best. Anyway, both he and our doctors have told me that it’s a very mild pill and wont do her any harm at all so for the moment we’ll continue.  He did also ask me if her periods were heavy (they are) and suggested that we keep her iron levels up. I asked if 6 weetbix each morning were sufficient!

All in all he was pretty happy with Beth as are we. He did ask her a few questions and she did answer. I was a touch disappointed that he didn’t comment on how well she is doing but we haven’t been there for 18 months so maybe he didn’t remember. Most of what he asked was of course from his notes. I can always tell when we don’t see somebody a lot because they call  her by her full name of Elizabeth.  He asked about high school and I commented that Beth wont talk about anything in the future. He suggested waiting until the transition days before trying to broach the subject which I’ve already decided to do.

Beth’s settling down now and watching Bee movie. I’m glad she’s varying her movies. Last week she insisted on watching Shark Tales twice a day every day. She’s still watching it but not so incessantly. 2 more weeks to go.

 
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A late entry for Occupational Therapy Wednesday January 19th 2011

Posted by Sarah on Jan 19, 2011 in Uncategorized

We had the car serviced yesterday at 7.30am of all times. As we were getting into the car Paul handed me the notes from Beth’s Occupational Therapy session at Sensational Kids – from last Wednesday! I hadn’t written anything about it last week because Whiskers (not her real name in case you didn’t guess) and Beth usually have a private session, therefore Paul didn’t see anything. She’s written some great notes here though so I thought I’d share.

Whiskers wrote that they had a great session and that she’s getting to know Beth better and better each session. She’s terrific as she knows how Beth likes her girl friendship group so has got to know Beth from that angle, as a buddy. She said that they had continuous back and forth converstion all session around Beth’s interests – movies, actresses, singers, friends and books. The also chatted a lot while Beth completed activities she enjoys there, swinging, painting and drawing. She also loved doing collages and mixing colours.

Beth had said that her engine was feeling ‘too fast’ in the first half of the session and ‘just right’ while painting. More work in future sessions on recognising and labelling pictures of other people and what their engine speeds seemed to be. This would raise her awareness further as to what speed is the right one for her. I love how Whiskers relates to Beth, they really seem to enjoy each others company and Beth seems to trust her. If Beth doesn’t like what somebody is doing she couldn’t really give a shit about what they have to say (pardon my french). She wont be cooperative and can be very rude. She enjoys going to her O/T sessions which really is half the battle isn’t it?

Whiskers also notes that their conversations are best when she follows Beth’s interests, comment rather than directly questioning all the time. There was a little drawing of Beth with her core group of friends and discussions on what she likes and talks about most with her friends. Funnily enough the first one is Justin Bieber though she rarely talks about him at home. One of the friends in the picture is rather obsessed with him though so I guess that’s why! She also has ipads down there, diary and feeling happy.

She then has a drawing of her seating ideas for school which, while a few things are a bit much, most are quite obtainable. She has her table/desk with the theraband going from one leg to the other for her to kick. We implemented this last year, it’s like a big rubber band and is used in pilates. It gives Beth something to do with her feet, therefore making her better able to concentrate. On the desk is a writing slope board, so that Beth would be writing on an angle. Don’t know if that would be possible. She has a move and sit cusion on her seat which we have tried unsuccessfully before, but there is also the big blow up therapy ball in the tyre which I think they tried last year with success to replace Beth’s chair. There is the chew toy options such as mints or straws, and a fidget toy. The problem with fidget toys with Beth though is that she uses them as chew toys and wrecks them pretty quickly. I guess if she has a chew toy at the same time it could work. Then the Beth suggestions come in. She has written – headphones with music while working, a mini trampoline and a big tunnel on the side for learning time. While in an ideal world it would be lovely to have these things (though not sure about the music) there is the rest of the class to think about. There is also the question of available room as trampolines and tunnels (though this could be collapsed down) take up quite a bit of room. Still, I’ll pass on to our grade 6 teacher and leave it to him.

We’re still having fairly quiet holidays as I’m still not quite well yet. The docs have now put me on steroids starting this morning for 5 days as my heart rate is still up and my blood pressure is still down. If this doesn’t change then they’ll do further tests on my heart but the consensus is that it’s left over issues from the pneumonia as it was a particularly bad bout. Beth has been a bossy little so and so, telling us what she wants with no manners whatsoever. When I got up yesterday, she looked at me and said “Get my breakfast.” Of course I wont do it and we tell her. She then overdramatises the whole thing with the hands clasping in a begging motion. “Can you pleeeeeeaaase get my breakfast mum?” This pleading happens when there is a ‘no’ to anything also which isn’t as cute. Oh well, only 2 weeks left of the holidays – well, 2 weeks and 2 days as my friend Bree kindly pointed out. I’ve missed the majority of them by being in bed and poor old Paul has had a crappy holiday break but that’s the way the cookie crumbles. Beth has an appointment at the paediatricians on Friday so will let you know how we go. Have a good week everybody! xx

 
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The Black Balloon Sunday January 16th 2011

Posted by Sarah on Jan 16, 2011 in Uncategorized

I just watched a movie called Tru Confessions. It’s about a teenage girl with a twin brother who has some form of mental retardation. I didn’t see the beginning but it seemed to me to be autism. She does a documentary for a competition and decides to do it about her brother, coming to terms with his differences in the process. I sat and watched with tissues in hand, it’s obviously made to be a weepy film anyway but of course it hits harder when you can relate in a personal way.

Tonight the movie The Black Balloon is on. This is a movie set in the 70’s or 80’s about a family with a teenage autistic son. It’s taken from the brother’s perspective and is a brilliant movie though very in your face. I went to see it with some of my HAGS girls (an autism support group) and one of our aides and friends from school. We sat with our boxes of tissues and cried through much of the movie. We also at times were rolling with laughter. Others in the theatre were silent through this, clearly horrified that we were daring to laugh at the poor autistic boy shown on the screen. The thing was that we could all relate. I especially had tears rolling down my face at one particular scene involving needing to go to the toilet when walking down the street. I wont spoil it for you if you haven’t seen it yet. I’ll just say that I’ve been horrified at the fact that Beth has at the park just dropped her dacks and weed before, also that when she needs to go, she often pulls her pants down before she starts running, even at school. Of course this makes it quite difficult to get there quickly! Paul has now learnt the hard way that you ALWAYS make sure that everybody has been to the toilet before you leave the house.

Another thing I love about the movie is that Toni Collette plays the mum. Now I’ve been told (and not just a few times either) that I bear a striking resemblance to her. I’m not silly, I get that at the moment it probably means as Muriel but hey, I’ll still take it. I’ve joked that when this blog gets made into a screenplay that Toni can play the part of me. She did an excellent job in The Black Balloon.

If you haven’t seen it, in the words of Molly, do yourself a favour. It’s a different setting, quite horrific in the sense that it makes you realise how lucky we are that our kids are born now and not back then. Us parents bitch and moan about schooling for our kids and funding but if you had an autistic kid born 30 odd years ago they usually went into a home. They certainly weren’t integrated into mainstream schools as they are now. It shows the attitudes of the ‘normal’ kids in the movie. Not that we don’t get that now but kids these days are more used to differences than they were then. It does however portray a brutally truthful reality to parenting a kid with autism. I don’t think I’m going to watch it again. I found it a fantastic yet draining movie for me, it’s showing my life at it’s rawest and brought to home how hard it is, and not just for the parents. But if you haven’t seen it it’s well worth watching. And for those of you who don’t have kids with autism, it’s almost a must. It shows how it really is, not how you see our kids but how we see them. I can promise you you’ll need the tissues.

 
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Saturday January 15th 2011

Posted by Sarah on Jan 15, 2011 in Uncategorized

Paul ended up taking Beth to Sensational Kids this week as I’m still not feeling the best. I’ve been back to the doctors and had the usual blood tests but I’m still feeling dizzy and flushy all the time so I’m going back on Monday again to see what they can do. Paul only has one more week off work and it worries me if it’s not sorted out that I wont be able to look after the kids properly.

Beth has been a bit out of sorts lately anyway and Paul (and Rod via email) both said that she had a few issues at Sensational Kids. Once again Rod did the movie scenario, where they act going to the movies as a family. Rod says in his notes that Beth just wanted to read a book and was quite avoidant of playacting the movies again. In his words she has some functional pragmatic challenges around expectation of being able to accept others view. Rod must have added menu boards and Beth had an issue with that. Paul told me that she found it difficult to accept that this time there were no maltesers to choose, Rod (as Shopkeeper) told her that they had run out. She went on an on about the fact that she needed maltesers. Rod explained that she needed to make other choices.

This came out the next day when Beth wanted to watch Bugs Life on DVD. We couldn’t find it and were trying to give her alternatives. She started talking back in our voices, saying “of course Beth, here it is” and things along that vein. Paul tried to say she had to make different choices and she kept making the same choice over and over and getting more and more upset, hitting herself on the legs as she did so. As Paul isn’t as used to Beth during the daytime he doesn’t see her doing this as much as I do. Often talking just wont do and I called her into the bedroom with me and scratched her back while we talked. She still wasn’t happy about not being able to watch Bugs Life but she chose another. I think it’s important in situations like this to try to find the thing that is lost or to preempt it happening again. Just because I’d diffused the situation once doesn’t mean that I’ll have the same result next time. Of course it doesn’t help matters when you have a child who can lose things every day and has no idea where they are left. We’ve had week long incidents where Beth has lost her DSi every day and will come wailing to me to find it for her. Usually it’ll be dropped down beside the bed but if we don’t remember exactly where she was playing it it’s a pain in the arse to try to find it. Mind you, Bridie does the same thing though with her it’s usually in one of her many bags that she carries around with her, she’s a right bag lady is our Bridie!

One of the issues that has arisen with puberty is the dreadful BO smell. Beth sweats a lot during the night and last night came in with me. She covers herself right up with the doona and by the morning the room can stink like a teenage boys room. I’m wondering if it’s because she’s got hairy armpits. I put deodorant on her every morning which works just fine but by the next morning she’s ripe. I think I might have to start shaving her armpits. I thought I could get away with not doing it as her school dresses and tops have short sleeves. Most clothes these days offer more coverage too as strappy tops just aren’t sunsmart. Also, because she wears a bra, it’s nice to cover that up too. Even though it seems that that rule has gone out the window, I still like the bra to be covered as much as possible. It’s such a personal choice whether to shave or not but once again I think I’ll have to make the decision for her, at least once to see if it makes any difference.

 
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A lovely playdate Jan 12th 2011

Posted by Sarah on Jan 12, 2011 in Uncategorized

Beth had her playdate with ‘Jen’ on Monday. I was a bit paranoid because I had never met Jen’s mum before and as I’m still not feeling terribly well it was up to Paul to take Beth. I would have offered to stay if it was difficult but Paul insisted that he wouldn’t be doing that and I resigned myself to a ‘what’s the worst that could happen’ attitude. I know I panic and fuss too much but often people don’t realise how much she does get in to and then are surprised when things are tipped out or broken. Still, she’s not as bad as she used to be and now that she’s older her friends can take on more responsibility for her.

Paul dropped her off and said that Jen was most excited and was waiting at the top of her drive for Beth. She asked that Beth stay all afternoon and for pizza and be picked up at 7pm. Paul said he got the impression that they had been planning it for a while and they were watching Bolt when he left.

As is the way with most kids I didn’t get much out of Beth when she got home other than that it was awesome! She came home with a bag of goodies. There was a gorgeous star shaped cushion and lots of pictures and cards that Jen had made for her. How sweet, it warms my heart when kids make such an effort with Beth. I sent Jen a message last night to thank her and she wrote back saying that she’s happy to do it again one day.

Sometimes I worry about not sending Beth to high school with her friends as most kids from our school go to one of 2 schools in the hills. We will be going to one on (In Bree’s words) the flat as it will be near our new house. A friend from school whose child is going to high school next year told me that the class lists came out and there’s only 1 or 2 kids from our school in each class, if at all. I can’t guarantee that Beth would be with anybody she knows anyway and I don’t want her current friends having the pressure of looking after her. I do think a new start would be a good thing but it’ll be very sad to have Beth leave a school that has been nothing but supportive with Beth, staff, children and parents alike. I’ll still be there of course with Bill and Bridie but as most of you know it’s a lot more intense with a special needs child. We’ve still got another year to go but we’ll do some visiting to high school this year. My baby’s growing up much too fast!

 
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Swimming 8th January 2011

Posted by Sarah on Jan 8, 2011 in Uncategorized

We’ve just got back from having a swim at my sisters house. It was a scorcher of a day – 34 degrees – so I called Deb this afternoon and asked if we could please come over. It was going to storm later so we arrived at 3pm.

Deb and Neil have foxtel. Beth of course loves this and as is the way with kids, often it’s an easy way to enjoy oneself without worrying what the hell the kids are in to. The problem is that that’s what Beth wanted to do. As soon as she got there she started trying to cajole her way into the house to watch Foxtel.

Once again Beths arguments took place with both her and my voices. Example. “Mum, can I go inside now to watch Foxtel?” “Of course you can sweetheart, thanks for asking.” This went on for most of the time we were there. It started as arguments and lies such as “but you said that after 5 minutes I could go inside.” She has a talented but revolting habit of spitting a fountain of water out through her teeth and chose to do this all over me, finishing with “See mum, I told you it’s raining!” It reminded me of the Judge Judy saying – don’t pee on my leg and tell me it’s raining. We told her that the older kids were watching adult shows on the tely, she said they told her they’d turn it over when she came in. Of course she did this in a high pitched whiney voice to let everybody know she wasn’t pleased. She had to go to the toilet, she had to have something to eat. She even put her crocks in the pool thinking it would give her a quick escape into the house.

Bill and Bridie were having lovely games such as jumping from the side of the pool onto a dolphin and counting how long they could stay on. Beth of course tipped them off, telling them that the rules of the pool were that there was to be no jumping. In the end I had to threaten to cancel her playdate on Monday if she didn’t stop being so horrible.

I hate it when she’s like this. I hate taking her out because she spoils it for everybody else I hate to admit I don’t actually like her when she acts like that. Mind you, sometimes I don’t like my other kids too and they’re not autistic! I guess the difference is that non autistic kids can be threatened, bribed and cajolled into doing what you want most of the time. Kids with autism couldn’t give a shit. If they’re in a bad mood they don’t care who knows it and make it a point to put everybody else in a bad mood too. Or maybe that’s just my Beth!

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