Autistic Children Blog

Beth’s gone off to school camp today. It’s her first with her high school so I’ve got mixed feelings about it. She has too.

We had a school production on Thursday night for Bill and Bridie’s school. As Beth’s old friends still have siblings at the school they were watching the production too. It was strange not having Beth in the production. We’ve been lucky, Beth’s a born performer and loved being in school productions. Lots of kids on the spectrum don’t like performing and are often working backstage or not being involved at all. Beth has always been on the stage, our primary school is very inclusive and always made sure that Beth had the opportunity if she wanted it. This is the first time in eight years that the whole school production didn’t have Beth in it. I thought she’d be bored shitless but she quite enjoyed it. She certainly loved seeing her old friends. It showed me how she still considers these girls to be her true friends. If we talk about having kids for a playdate it’s Jessica and Erin that she talks about, not her friends from this year.

This is why I thought it was important for Beth to go to camp this year. I know she wanted to stay at home with me. I know she wont like having no computer or ipad for two nights. I know she’ll have to socialise more, not just with kids in her class but with ones perhaps unfamiliar to her. And that’s just what she needs. It’s good for her to step out of her comfort zone once in a while.

For me it’s a funny feeling. I love the fact that I wont have to drive an hour and a quarter round trip twice a day. I love that I don’t have to leave to pick the kids up until 3pm instead of 2pm. I also love the ease of just having two kids at home. It doesn’t matter which one isn’t home, it’s always easier with one less. The other side of me will miss Beth dreadfully. As I said goodbye to her this morning on the bus we said that we loved each other, she said she didn’t want to lose me. I don’t think she was necessarily thinking that she would, maybe she thinks if she says things like that I’ll change my mind and let her be at home. I of course reassured her, telling her that as I would be picking her up at 12 on Wednesday that we’d get MacDonalds for lunch on the way home. In many ways Beth is my easiest child, she’s easily pleased and can entertain herself all day if she’s got her dvds and ipad or computer. She eats well and she does what she’s told. And she needs me which is lovely. Most kids grow up and become fairly independant, Beth still needs her mummy lots and hard as it is I also love that about her.

To make the trip more exciting we went clothes shopping yesterday, Beth got some girly tops and new boots which she wore today. She had her new magazine for the bus ride which she started reading as soon as she got on the bus and put her seatbelt on. I asked if she was looking forward to the camp and she said a little bit. There’s a dinner out, a visit to Sovereign Hill, night hikes and bike riding. I told her teacher that Beth can’t ride, she said they’d teach her how to. It’s specifically a special needs camp which is great, there’s 16 kids and three staff members, two of them being women, one being Beth’s teacher. I couldn’t ask for a better crew, she had friends going with her, she’d shaved under her arms in preparation this morning, she’s got her new clothes, what more can you want. And the weather is amazing, perfect for a few days of bonding. It’s hard but it’s also necessary. My baby’s growing up!

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.

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?”

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!

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!

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.

I’m not very happy today. We were meant to move into the new house tomorrow (Saturday) so that we’d be in and settled before the kids went back to school on Monday. I had a phone call from our builder saying that the electricity hasn’t been booked to be connected up until next Friday! We’ve had problems with the electrician he uses when it comes to forms, he’s not terribly bright and we’ve had several holdups because he’s filled in forms wrong or hasn’t signed orders. This time I’m really pissed off though, it’s not just a hold up in building, it’s making a difference in us moving. Not sure what we’re going to do, at this stage I’m hoping my inlaws wont mind if we stay with them for a couple of nights. If we don’t move tomorrow then I’ll have to do it by myself as Paul is in a new job and can’t have time off. Also, we have to be out of the old house by Wednesday so I wouldn’t have the time to clean and get the carpets steam cleaned. I’m hoping that a miracle will happen and they’ll feel sorry for us and come out and put the power on but it’s just not going to happen. Crying didn’t even work so I didn’t even bother pulling out the autism card, hard nosed so and so’s!

Anyway….. I took Beth to the dentist at her school today. She went last week, they have a dental van that is free so well worth going. She’s very good at the dentist as a rule but as we all can be, she was adament that she wouldn’t have a needle. Last week the dentist told me that she could do a temporary filling and some sealants but to do the proper filling required Beth would need a needle. Well today was the day. We tried to convince her, to bribe her with a dvd, nothing would make her say yes. And really, who can blame her? I hate the dentist, something I’ve tried not to show my kids but definitely my biggest phobia. The dentist was wonderful though, showed her the numbing cream and then gave her a gentle poke, saying that the needle would feel like that. She promised Beth that the needle wouldn’t hurt. In the end she told Beth that usually they just bring it out for the little kids but would make an exception for her, they would bring out the special fairy drops. They had to be administered via the needle but would just be dropped around the gum area and would make the gums numb that way. Beth said yes to a few and then bugger, my phone rang, which stopped the process. Finally she relented and was so relieved that it didn’t hurt that she was good as gold for the rest, having a huge filling which went to the side of her tooth as well. I’m still not sure whether they did really give her a needle or drop it on the gums, either way she was fine. I have to take her back on Monday for another one so let’s hope todays memory is a good one. Beth was funny though, asking if they would kill her, if it would damage her kidneys, all sorts of things. The dentist told her she should be a writer, she had so many excuses!

The rest of this week has been nice but busy. We visited Catriona and Jose again on Monday, again with Bec and her kids. We went to Bec’s house again on Wednesday. We went to see Brave at the movies on Monday. Just me and the girls. Beth’s such a bugger, Bridie needed to go to the toilet so I put Beth in the end seat as she sometimes jumps up or stands up, mainly when I’m not there. Well, little bugger did it didn’t she? I came back and there she was, sitting on the top of the seat! At least it wasn’t in front of anybody. She knows too. When we left I asked her if she thought I’d be upset with her. She said yes, because she was sitting on the back of the seat. I don’t know if she had been there the whole time or just as she saw me coming back through the door. It reminds me of when she got into smashing eggs when she was about 5. If she didn’t see me coming in to the kitchen I’d spy her with a smile on her face, holding the egg in the air, then when she’d see me down it would go. What’s the point of being a little shit if it doesn’t get a reaction!

Next time I speak with you we’ll be in the new house. Hopefully sooner than later! The internet will take a while to go on so it may be a week or so. I’ll try to stay sane until then! xx

Beth’s got the all clear from the doctors. I was a bit concerned yesterday however. We had done the wee collection starting after the first wee on Monday all the way through til Tuesday first thing. Beth is such a trouper, she obediently sat on the bucket each time and even woke me asking for the bottle that I poured the wee into on Tuesday night after she didn’t need to anymore. I took it to the lab on Tuesday morning and coincidentally had a doctors appointment on Wednesday afternoon for Bill so asked the doctor about the results then. I really like the new doctor at our surgery but she’s always running so late. 45 minutes after our appointment we got in and the doctor alarmed me as she had one of the results back and this said that the red blood cells were elevated. This meant that if the protein was still in the wee she’d have to send us to a urologist to get her kidneys checked out. As the protein had been in the previous two tests I was understandably worried. She said she’d call me after the results came in so I asked her to double check that they hadn’t come in already. She checked and yes they were in and everything was ok! So glad I pushed it otherwise I’d be a basket case by now! She said we’d do another check in a month or so but she wasn’t worried at all.

It’s school holidays this week. We’ve had a good week. Monday we had a quiet day, just staying at home and watching tely or playing games. Tuesday we went to visit my friend Cat and her son Jose. Our friend Bec came with us with her kids. As we all have one kid on the spectrum (Bec’s is Will) it’s always fun to go somewhere where they ‘get’ it. We had a lovely day, Cat always has plenty for the kids to do and our boys alternated between playing playstation games to playing footy outside. Bridie  played with Bec’s daughter Kasey who is one of her besties and Beth watched dvds and played on her ipad. Will was funny, he’s very particular with his food, especially his pies. Catriona had bought frozen pies but as they weren’t from the bakery they weren’t the right ones. He came into the kitchen to check out the pies and just said ‘no thankyou, they don’t look right, they’re just not right’ and walked out again. Even saying no he has lovely manners, Bec has taught him well. We left at about 5pm so all came home happy and tired.

Yesterday (Wednesday) we went to Bec’s house for a play with other friends Bree and Eloise. Our fifth in our little clan is Liz but she had sick kids at home. We seem to have not been all together for several weeks as one or the other of us has had sick kids or been sick ourselves. It’s that time of the year. We all get together every Thursday usually, dubbed Bec Thursday coz that’s where we usually go. It’s one of my sanity savers, we’re all a little bit different as are our kids, and we celebrate this in ourselves and in each other. I don’t know what I’d do without my girls. Anyway, once again all the kids had a wonderful time and us adults spent the day eating, chatting, even a few tears. We often take our old bags of clothes so yesterday most of us scored some new clothes too! Beth spent most of the day trying to play on Bec’s Ipad even though she had hers with her. They got the pleasure of experiencing Beth never giving up, with her nagging all afternoon. Bec realised she’d made a mistake when Beth picked up that Bec had said “not yet” instead of no to using the ipad. Every two or three minutes Beth would come up and say “Is it my turn now, Bec said not yet so when, when, when?”!

Today I took the kids to see Ice Age 4. I was a bit concerned as Beth being obsessed with the Muppets at the moment had her talking about taking someone called Peppey to the movies with us. On a You Tube clip she has of him it has his phone number in the background (probably the Muppet studios) so each time the phone rang she’d say it was Peppey. My phone rang while I was in the shower and I missed it but heard Beth talking then saying ‘sorry Mum’ as she heard me coming. When she asked me what time Peppey was coming and what friends he was bringing I ended up stopping the charade. I agreed that today could be Muppet day but that Peppey wasn’t coming, he wasn’t real and she was to stop talking about him coming to the movies with us or we just wouldn’t go. She’s pretty good when she knows she’s crossed the line and agreed to shut the hell up! The movie was terrific, Beth liked the teenage characters of course and talked about how cute the teenage boy was even though he was a mammoth! We stopped by the new house to see the new splashback in the kitchen (picture below with Beth walking in front of the camera!), the problem was that the builder had put a heap of dirt in front of the door so it was incredibly muddy. Beth’s crocks got stuck in the mud and it wasn’t a very enjoyable experience. Still, the kitchen looks fabulous and we’ll be moving in at the end of next week. We may not have internet for a while so I’ll try to post once more before we move.

Stay sane in the holidays!

I’ve had a bit of a scare today. I don’t think it’s really anything to worry about but it’s still hard not to. A couple of weeks ago Beth had to go to do a wee three or four times in a row in the morning. The other kids had a day off school so I let Beth have the day off too and made an appointment for her at the doctors. I couldn’t get in until the next day so I took her even though it hadn’t happened again. As it was a Friday I thought I’d best get it seen to in case it flared up again over the weekend. They took a urine sample and said it seemed it had some protein in it but nothing to be alarmed about. The doctor sent it off for analysis and gave me a script for an antibiotic just in case it came back that there was an infection.

Last week Beth had the whole week off as she was very snotty and coughy. I took her to the doctor again on Monday as I had been asked to bring in another urine sample after Beth had finished the antibiotics. I thought I could knock the cold on the head before it got any worse. The urine seemed to be clear of infection but it was sent of for analysis anyway. Today I got a call from the doctor telling me that although the test had come back clear of infection there was still some protein in the urine. This means that I have to get a 24 hour urine specimin to have it tested. Well as you can guess I started to worry, thinking of all sorts of things; what if there’s something wrong with her kidneys, I wonder if I’m a compatible kidney donor, how will she cope if she has to have dialysis? All those yucky things. Luckily I had another appointment for her at the doctors an hour later, Beth had woken up this morning with an earache, not sure whether she was bunging it on to get yet another day off but wanting to play it safe I let her stay home again. She had fallen asleep after we got home from dropping the kids off so as that hardly ever happens I was glad that I did.

This time we saw Dr Mark who is the doctor we normally see. Briony was the one we had been seeing in his absence, both excellent doctors. As soon as I walked in I asked “Should I be worried?” I had had a few tears and hadn’t wanted to let Beth see me upset so held myself together at the time. Mark assured me that it’s just precautionary measures, that the protein levels were just above normal, that they may be higher because she’s not been well. He made me feel much better. Of course that’s his job isn’t it? We can’t take the 24 hour sample until the weekend as as a little bonus Beth has got her period and that could give a false reading on a test. He said that over 20% of the urine tests that we had done gave false readings anyway, that if anything was wrong the numbers would be higher. Still, surely when something first starts the numbers start off low? Anyway, I’m not going to stress about it too much. It probably is nothing to worry about but of course my job as a mum is to worry isn’t it? It sucks though, surely the big tick through the box labelled autism should be enough for one lifetime for my girl? Surely that’s enough stress for her and myself to contend with? Beth of course in her dramatic manner asked Dr Mark if she had kidney failure. Lovely Mark held her face in his hands and promised her that she absolutely did not have kidney failure. I really don’t think she thought she did. After all, when we went to get the sample pot from the nurse Beth asked her if she was going to suck her brains out!

Beth’s ipad isn’t working properly. The tip of the headphones got stuck and we can’t get it out. This means that the sound is not working. This has just happened in the last half and hour and already Beth is driving me crazy, she’s going on and on about it. I started off saying that she could play it without sound but I keep finding her with things like pencils and coathangers to stick in the hole to fix it. I’ve told her I’ll take it to Bunnings tomorrow and try to get small plyers to get the tip out but that’s not good enough for her. I even heard her shout out as if she’d hurt herself. I told her to stop playing with the coathangers as I thought she’d cut herself but she said no, she was trying to get one of Henry’s (Smelly Cat) claws to use!

She’s being so argumentative that when we suggested she watch a dvd she deliberately chose ones that she knew we couldn’t find. She asked for one after the other that she knew we’d either packed away or we’d tried to find yesterday and couldn’t.

Thank goodness she’s funny though, at least it makes us see the lighter side to her tantrums. The funniest thing was when she was pacing up and down in her frustration. I was looking on the computer trying to find solutions to our ipad crisis. I heard Paul tell her to stop playing with her boobs. Beth’s oppositional response “They’re not boobs Dad, they’re breast implants!” Cheeky bugger!