Autistic Children Blog

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!

Gee Bethie’s doing well at her new school. It’s only been a four day week because of the Queen’s Birthday holiday on Monday and she’s had a runny nose threatening to turn in to something else but she’s had a good week this week. There’s been a couple of good things and one that I’m choosing to see as good even though I didn’t like it much. I’ll tell you that one first so that we can end on a positive note.

I drop Beth off in the mornings and go in to the office to sign her in, leaving her to walk around to the big gate that she enters by. Sometimes this is open and sometimes it’s not. On this particular morning it was shut and I watched as Beth reached down to open it. I could hear a girl telling Beth that no, she wasn’t allowed in and that she had to go around to the office and come in that way. When Beth gets distressed or annoyed her voice goes quite high and I could hear her saying “No, I’m allowed to come in this way.” I had already signed her in at this stage and started to walk across there to let it be known that an adult had seen this but by the time I got there Beth had made her way in.  Much as I didn’t like hearing Beth being pushed around I choose to instead be proud of her, she stood up for herself and she got in the gate. It didn’t seem to bother her and it was a good lesson for me. I can’t always be there to help her out and she seems very capable of sorting things out for herself.

There was a sports day on Wednesday. Of course Beth didn’t want to go but when she got home she told me that she did long jump, running and frisbee. She had a “Well Done” ribbon and her teacher had written in her diary of how well she’d done and how she’d participated in all three activities. Wow, how good’s that?

I’m noticing more and more how many people know Beth too. A boy came and sat next to me last night at pick up time and said “You must be Beth’s mum? I’m her friend Mohamed.” Beth didn’t seem to know him but he was lovely and must have at least spoken with her. When I dropped Beth at the other campus this morning there were several boys who were genuinely shouting out hello to her. I guess they are teenagers now and she is a pretty girl. Either way, it all seems very friendly.

The last good thing was when I picked Beth up tonight. The Middle School coordinator came out to speak to me. She said they had walked back from the other campus this morning and Beth did it independently the whole way. She didn’t need her hand held and she didn’t need to be hurried up. the coordinator was so excited she just had to come and tell me! Things are certainly looking up for my girl! Have a good weekend everybody. xxx

Paul is away sailing for the next two days so it’s just me and the cherubs home. It’s bloody cold so I know where I’d rather be. Bridie has been lucky enough to score an invite to see Annie on stage so it’s a lovely quiet house at the moment. I need to be packing too but thought I’d pop on here and give a quick update.

We’ve had a fairly quiet week. Beth is doing woodwork now and has told me she is making a treasure box. I can’t wait to see it. She’s so proud of the things she’d made so far this year, I think it’s a real accomplishment for her. Her Miss Piggy cushion was terrific, she made a hanging plaque with her name on it for her new room and now she’s making her box. She’s enjoying choir which is on a Friday and sings me the songs when I pick her up.

The house is doing well, the tiles went in this morning in the bathrooms, the painters are coming on Tuesday and the front steps are finished. It’s been several years since we first thought of doing this so as imagined we are all hanging out to get in. The kitchen is in and beautiful, it’s going to be so nice to be in a brand new house. We’ve always lived in old and crappy places (some more so than others such as the current one) so everything new will be amazing.

I made the kids soup for lunch. Beth does say some funny things. It was too hot for her so she asked if I could add some ‘coolphwip.’ It must be something that she heard in a movie. When I asked her to elaborate she said “You know – coolphwip – putting the emphasis on the h!” Yes ok, thanks, that clears it up! I do love how she uses big words appropriately though such as emphasis.

I finally got the copy of Beth’s goals for Semester one so I thought I’d share some with you. They’re very obtainable so that the kids can see that they can do them if they really try. With her reading it says that she can read the story and predict events by looking at the obvious objects but has limited understanding of predicting what will happen next without these, so they’d like that to improve. In writing it says they would like her to independently write the answers to reading comprehension questions in full sentences, 60% of the time. She can currently do this using short phrases with assistance. I had to laugh in the Speaking and Listening section :

Goal – Elizabeth will listen and respond to simple verbal instructions by the teacher 60% of the time.  Current – Elizabeth follows and responds to teachers instructions only when she is ready to follow them. Hmmm that sounds like my Bethie!

Maths goals are knowing all of her money and what adds up to $1.00 where as now she can identify them all but not what they really mean. She can currently identify 2D shapes but they’d like her to know all of the different shapes, also on three dimensional shapes such as pyramids and cones. Beth can read time to the quarter hour confidently but she mixes up the hands when she writes and shows time on a analogue clock so this needs work. She can now mentally compute 50 addition and substraction sums (up to 20) in 14 minutes with an accuracy of 100%, this will be within 9 minutes in her goals.

In civics and citizenship Beth needs to independently name and explain the significance of each of the 3 symbols on the Australian Flag. In humanities they would like her to locate and label all states, territories and corresponding Capital Cities and surrounding oceans independently, she can now do this with the aid of a word bank.  Health education will be naming 6 values from the Healthy Realtionship Program, she can currently name 3 – Respect, courage and friendship.

In Interpersonal Development Beth will learn to respect her classmates during work time by working quietly and not calling out, 60% of the time. She currently works quietly during the one on one assistance and can work quiety in group situations 30% of the time.

Wow, if they’re obtainable then I’ll be very impressed, especially the last one! It just shows that a ‘special school’, while modified, still has excellent educational and personal expectations.

I’ll leave you with a Beth funny. Beth had a rock and roll day a little while ago and took sunglasses with her for the performance. Last week on the Friday they had a free dress day and when Beth came out she had her sunglasses on as well as her casual clothes. I said to her “Wow, you’re looking pretty groovy today.” She said “Yes I am.” Then she told me she was being Lady Gaga. When I said “Oh are you?” She said “Yeah, cos I’m Ga Ga Gorgeous!” I laughed and asked who told her that. She replied “I did.” We had a good laugh, a real genuine laugh, all the way to the car. She sure is Ga Ga Gorgeous!