Autistic Children Blog

I had an email from a terrific organisation last week – Interchange. They were asking around on behalf of a church group about doing a movie about a child/teenager with special needs and a friend they had who didn’t have special needs. Instantly Beth’s friend Jessica came to mind. She’s a gorgeous girl, I’m sure you’ve heard me talk about her before. She’s wonderful with Beth and they play so nicely together. I checked with Jessica’s mum first to see how she felt about them doing the movie together. They would film them playing together then interview them each to ask what they liked about each other. Tegan asked Jessica and they both said yes! I’m very excited. We’re organising it for next Tuesday so will keep you posted.

We’ve had a quiet weekend. Beth seems to have settled in well to grade 6. She still has issues about talking about things in the future though. It’s her 12th birthday next month and I’ve asked her what she wants as a present, also what she wants to do with her friends. She turned away from me and wouldn’t talk about it. I’ll talk more with her tonight as it was in the car on the way to school and Bill and Bridie were in the back sticking their beaks in with suggestions. Hopefully she’ll talk about it if she realises that she wont have a party if she doesn’t.

We had the research thingy at Monash Uni yesterday. It made me want to go to Uni, I love all those big campuses. Beth was really excited about going. I’m not sure if it’s because she was looking forward to the games on the computer or because she didn’t want to go to school. Doesn’t really matter, she wasn’t against going which was the main thing.

We got there early and Beth with her wonderful memory asked “Where’s Tamara” as if she’d met her before. They introduced themselves to each other and Beth started out with her joke. She does this to most people and it goes something like this : “What’s your favourite colour?” then “What’s your favourite animal?” then “What’s your favourite number” then “What’s your favourite body part?” Then she’ll start laughing (Just as Fizz from the Tweenies does when she did it originally) and say “Your favourite animal is (for example) a green pig with 17 eyes!” I did wonder whether Tamara may stop her after the 2nd or 3rd question, not knowing that it was in fact a joke, but they got all the way though it much to Beth’s amusement. As they shut the door behind them I could ask Beth asking what Tamara’s favourite movie was, which character she likes and what part of the movie was her favourite!

As the testing went on I could hear things such as a voice on the computer. It wold say a sentence and Beth would have to repeat this. I also heard Beth saying ‘no’ over and over again, getting louder and louder. Then I heard some yeses so understood that it was questions that she was answering. All in all I think it went well and she seemed to enjoy herself. We’ll get the results in about 3 weeks.

We’ve had a good few days. The weekend was fairly quiet with Saturday going to Bev and John’s for lunch and Sunday a bit of shopping. Paul took the kids to Knox to buy shoes and school shorts and Beth wanted to go along and get a dvd replacement for one that had broken, so I had a lovely quiet afternoon. Beth was ok with going to school on Monday morning so she must be settling in to Grade 6 ok. She did get a notice sent home saying that she had gotten 2 yellow cards last week. One was for leaving the classroom without asking and one was for going in to the new music room at lunchtime and playing without asking. We talked through the notice and she said the obligatory “sorry mum, I wont do it again.” Then she told me yesterday that she got another card for running out of the room and had to spend time in the principals office. I don’t know whether it’s a flight or fight situation, if there’s something that’s freaking her out or if it’s just her being naughty. I’m thinking it’s the latter as they’d make a few more allowances if it was an anxiety issue. I’ll have a word with her teacher when I get the chance.

The school is having an excursion on Puffing Billy today. Paul has taken the day off to go. Bridie wanted me to go but I have other plans. Last time I went on Puffing Billy I was pregnant with Beth and got so sick, I thought I was going into labour! It’s a gorgeous day for it, it’s going to be 31 degrees. I’m sure Paul with be exhausted after spending the day with a school full of kids.

Beth does make me laugh. As we had Sensational Kids on Wednesday she wasn’t there for the captaincy speeches nor deciding what sort of captain she wanted to be. Her teacher sat her down and asked her to choose and she decided to be the house colour Red captain. I found this a strange choice as she hates sports and rarely participates but there you go, it was her choice. At assembly this morning the principal read out all of the grade 6 captains but hadn’t been told yet what Beth’s role was. At the end her teacher told the principal and she was asked to stand up with the other 2 red captains. Most of the kids had stood up, looked around and sat down again. Not my Beth. She stood up and pumped her hand in the air with a big woohoo! Good on her. I love that about her, she’s happy for the world to know when she’s happy about something. Of course this works the other way too.

We went back to swimming last night. Beth was happy to see Paton and did really well. She seems much happier now that she realises that she likes grade 6. I think it’s the fear of the unknown. Beth’s anxiety rules a lot of her moods as is probably the case with most kids with autism. She likes her peers as well as her teacher and her aide and that’s half the battle.

Beth was very happy to be going to Sensational Kids this morning. It’s been so hard getting her up for school lately. She’s appeared at my bed with her pillow each night, usually about 10.30 – 11pm. I just let her in, I need the sleep too. She then doesn’t want to get up in the morning. It’s not that she’s necessarily asleep, it’s just that she doesn’t want to go to school. Yesterday she even went back to bed after her breakfast. I’m finding it very hard to deal with as Bridie is being quite difficult in the mornings too. After Beth is dressed and I give her the talk (every bloody day) about not believing her if she’s sick when she pretends to be, she seems to be ok about going. This can take half an hour or more though. With Beth pretending to choke herself and coughing, and Bridie abusing the shit out of me, I’m not enjoying myself too much! Also, my heart rate has been up some more and the more I think about it the more I think it’s stress related. I just don’t have anything much to give at the moment what with getting over the pneumonia and pleuracy. I’m enjoying my days when the kids are at school. I find it hard as we’re building at some stage this year and as the time goes on it’s clear how much we’ve all grown out of this house. It’s driving me mental! Anyway, sorry for the bitch but hey, the blog’s about our life, warts and all.

It was a bit disappointing when we got to Sensational Kids as Rod was away sick. We went for a wander to buy some magazines and coffee (me), pancakes (Beth). Whiskers (not her real name), the Occupational Therapist was still there so in Beth went with her. I didn’t go in for any of the session but Whiskers said that it went well. They worked on Beth’s handwriting this week with Whiskers doing an assessment to see where Beth’s strengths were. She’s so thorough, I’m really pleased with how it’s going. She told me that Beth hasn’t got a strong posture which makes it difficult for her to write properly. This means that she pushes down on the pencil too hard, stopping any fluidity. It’s also the reason why Beth leans on people a lot. She’s going to give me some activities for home and school to help with this.

Next Wednesday we’re off to Monash to help with a study that is being done on the effect of attention and anxiety and how it impacts on school children. As this is one of Beth’s main issues (as is probably the case with most autistic kids) I put our names down. They were pleased with us contacting them as there aren’t as many girls as boys who have autism. I’m looking forward to going as, for helping them, they can do a full academic assessment. This means that I can have something in writing to take with us when we go to High School, on top of any reports and letters I get from our Primary School. I believe you can’t have enough information. If anybody is interested in participating you can contact Tamara May on tamara.may@monash.edu Funnily enough the lady who supervises Tamara is an old childhood friend. Small world!

Our budgie Tweetie Pie died yesterday. (Original name I know.) Bridie noticed as she was playing on the computer. The poor little love was really distressed and decorated a tissue box, filling it with flowers for Tweetie. We got him for Beth’s 5th birthday so nearly 7 years ago. Beth had selective mutism at the time and we told her that Tweetie wouldn’t learn to talk if she didn’t say hello to him. She waved hi instead! Bridie and Bill went with Paul to bury Tweetie Pie last night. Beth called out “I thought he would live forever.” She then said “We’d better go and buy another bird tomorrow then!” Poor Tweetie!

Well so far so good. I was worried this morning as Beth kept telling me that she felt sick. She has had a bit of a cough for the last few days and I wondered if she really was coming down with something or that she had heard me telling the other kids how many more days til school started. If she had her way she’d never go to school. Having said that she does love the social aspect of school. I figured once she got into the classroom she’d see that it wasn’t too bad.

Last night she was up and down like a yoyo. It was dreadful. I was up late due to all my favourite shows coming back after Christmas. It was the first Grey’s Anatomy, Desperate Housewives and Private Practice on at the ridiculous time of 10.30pm. I was wide awake but as the night wore on I realised so was Beth. Usually she’s a bit flighty but by 10.30 she’s conked out. Not last night. I kept threatening to bring her in with me and she kept telling me that she didn’t want to sleep with me. Finally at 11pm I got fed up with it. I heard her get up and I caught her going into the kitchen. I yelled at her to go to bed and she exclaimed “But I’m hungry!” Nice Mummy me replied “Tough, get out of the kitchen NOW!” I made her come in to my bed and she finally got to sleep at about 11.45pm.

As soon as Beth woke up this morning she started coughing. When in the bathroom getting ready to  clean her teeth she started to gag and told me she needed to vomit. I told her I didn’t care, she was still going to school. That stopped her. I then caught her with her hands around her throat so that her cough would sound so much worse. I explained that if she did things like that I wouldn’t believe her when she really was sick. I have told her this before and I don’t think she gives a rats arse about it but it made me feel better to say it!

We set off early so that we could get all 3 kids settled into their new classrooms. Bridie was going into the new building so didn’t even know what room she’d be in. The plan was to settle Beth then take Bridie. What I didn’t count on was the traffic jam at the Catholic Girls school on the way. Apparently it happens every year, when the new year 7’s start and all the parents want to go in with them. They park in the street and block all the traffic. We got to school just as the bell rang.

I explained to Beth’s teacher that Beth was really anxious and he told me that she had been quite anxious even at their trial time last year. She had said to him then that this wasn’t her classroom. Just after we arrived this morning she ran off to the toilet. Luckily her aide was there and I told her so that she could go and get her. I also told her about the speeches day on Wednesday, hoping that she could get out of Beth what leadership role she’d like to take. Also whether to cancel Sensational Kids on Wednesday so that she could do a speech for school captain.

I went off to art class (at last) followed by lunch and wandering around the shops with the girls. It was very busy in Belgrave, I think lots of mums had the same idea. When I went to pick the kids up they were all as pleased as punch by their day. Beth seemed very happy, holding hands with her bestie as she came out. She still wouldn’t tell me about the speech day though!

I’m looking forward to talking about my kids without a moan or descriptive  words. Such as ‘bloody kids’ or ‘Bridie’s driving me crazy.’ Luckily Paul was home for most of the school holidays. I’m going stir crazy as it is and I’ve only had 2 weeks of it by myself.

Beth was especially naughty last night. She kept getting up and told me that she was trying to get Sam to come into her room for a cuddle. Sam is Bridie’s rabbit who we bring in at night time in a little cage. During the day he’s out on our enclosed deck but at nights the possums come and eat all his leftovers. I knew in my heart that she had probably got him out of his cage but I was jolted out of my sleep and just wanted to forget all about it. I ended up putting Beth in with me as she was running in and out of her room and it was after midnight. When Bill came in this morning to tell me of something munching under his bed I knew what it was! Hopefully he hasn’t done much damage. He doesn’t generally poo in the house but as the lid wasn’t off his cage, it was just opened from the top, he didn’t have much choice. It’s more that he chews on everything, in particular wires. We’re lucky he hasn’t been electrocuted, we’ve only noticed when something has stopped working.

That’s the problem with summer holidays and daylight savings. The kids stay up til all hours. We try to get them into bed between 8 and 8.30pm but it’s still light. Bridie didn’t go to sleep ’til 10 last night and she was feral until that time. I know that she’ll still be feral for a few weeks after school goes back while she juggles going back to earlier nights and tiredness from being busy all day but at least I’ll get a break.

The speeches for the school captains and vice captains are on next Wednesday. We have Sensational Kids booked in for that day but as it’s such an important part of grade 6 I thought I’d give Beth the option of cancelling SK and doing a speech or going to SK. Of course as it’s in the future and to do with the Grade 6 that we still are unsure about, she refused to discuss it. I’ll have a word to her teacher as if she wants to try out for it I don’t want to hold her back. Mind you I don’t know how she would go if she was voted in but she’d certainly have a lot of help. Even so, there are captaincies throughout the whole of grade 6 but she wont even talk about which one she thinks she’d be suitable for.

This morning she’s being pretty horrible to everyone, but then again they’re all quite snappy. I think they’re bored and tired and basically I’m just not going to entertain them! Roll on Friday.

We had such a nice day yesterday. I had my echo cardiogram (seems to be fine, will see tomorrow when doc gets results), then picked the kids up from Deb’s who had them for me. My friend Liesl had called me to see when we could catch up as her daughter Jasmine wanted to see Beth. We had been in mothers group together 11 years ago (my god that seems so long ago when written like that), then at kinder. The kids had gone to different schools. Liesl and another friend Karen and I have kept in contact through dinners but the kids hadn’t seen each other in years.

I grabbed some rolls and a cooked chook (chicken for those not in Australia) and headed over. To start with Beth put on a dvd and ignored Jasmine which was pretty much what I expected! Still, it left Liesl and I to have a good old chin wag. Bill and Sam (Liesl’s son) wanted to play some XBox after lunch so Beth had no choice but to play. She read a few books but I did hear her talking with Jasmine a few times who was playing with Bridie. When all was quiet at one stage I called out to her and she answered me straight back that she was in Jasmine’s room. She did watch another dvd but I was pleased that she had joined in on some of the play. Liesl was shocked that after one scan of the dvd drawer Beth knew where the second dvd was to be found.  I told her that Bethie has a photographic memory of things like that!

It was so nice to catch up. The great thing about them seeing Beth is that they can see the differences and improvements in Beth. With constant therapies over the years I can often see subtle differences. It takes somebody who hasn’t seen her for ages to point it out though. When Beth was at kinder she had selective mutism so a lot of her personality didn’t come out. So much of Beth as an 11 year old is about her humour which of course her voice plays a big part. Liesl was amazed at how different she was from the withdrawn 5 year old that she remembered. I feel so proud of Bethie to see how far she has come.

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!

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!