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A busy, busy week

Posted by Sarah on Feb 25, 2010 in Uncategorized

My posse and I at the zoo

We’ve had such a busy week. The whole family went on a whole school excursion on Tuesday to the zoo. Paul had the day off as we’ve always tried to have one or the other of us go on these excursions. This was the first year that all 3 kids were going and it was a gorgeous day for it. I was going to go with my posse from school, Bec, Bree and Prue (alphabetical) but when Paul decided to go I went with him. I managed without my girls by talking to them on the phone part of the time!

We had explained to the kids that part of the day they would be without either of us as we had only 2 or us and 3 of them. It worked out well. I started off with Bridie who promptly got taken off for a parentless talk, therefore leaving us mums to go and get coffee. Hence the photo above, I know it’s not of Beth but it makes me giggle so thought I’d put it in! I’m the one in the front on the right with the hat. Prue is behind me, Bree across from Prue and Sasha (Bo’s mum who I’ve discussed) at the front. Bec’s the one taking the photo (Will’s mum.) After they came out we went off to see the very cute baby elephant. While we were there I ran into Beth’s group so moved over to them and spent the next hour or so with her. She loved the orangutans, they are so entertaining. It was nice to see her in a social setting with her friends, they can be so good with her. Her friend Jessica was lovely, showing her the reptiles at the zoo. The kids didn’t even blink an eye when Beth kept standing in front of their cameras, something that must have p’d them off bigtime! They just moved her aside or said “Excuse me Beth, you’re in front of my camera.” Of course part of this might have been because I was there but I do think they are exceptional with her. I then spent the last hour with my Bill’s group. I was chuffed to have him holding my hand all the way around, I thought he’d be embarassed by me but I was wrong.

Today was a huge day. We had Richard Malter – the Flaxseed Guy this morning and Sensational Kids this afternoon. At our last appointment with Richard he told me that we had to get rid of some more metals in Beth’s brain as they were stopping a particular number going down. I’m not sure what the number is but it shows the amount of damage that is being done. When we first started it was several hundred, last time it was 140 and it is now 100. The metals are now gone but they were masking another bacterial virus so she now has capsules of a stuff called Neem which is natural and meant to treat this. I am so proud of Bethie, we tried it when we came home and she took them for the first time ever. Apparently the stuff itself tastes repulsive so I had visions of baking sweet cookies with green bits in them, I’ve heard of things like that but didn’t think I’d be making them for my daughter!

Next we were off to Sensational Kids with a healthy stop for KFC on the way. Melinda has got on board with the How Does your Engine Run program so created an arrow with three colours in a semi circle. Engine running low, just right, engine running high. Beth needs to identify where she is so that we can help her recognise how she is feeling and how to rectify it. Melinda did one for school as well so that I can pass it on to Beth’s teacher.

Rod’s session was fab as usual. Beth was fantastic today, funny and clever, I love it when she really enjoys what she’s doing. We had a simple match up game and the rules were 1) find the match and 2) explain why they match. Rod of course changed the game around so that he picked ones that matched for different reasons. For example instead of matching the chicken to the egg he might match it with a bee because they both can fly. Beth cottoned on to this idea well and at the end was offering some great matches of her own. She matched a toothbrush and a screwdriver because they were both straight. She also figured out ones such as the toothpaste and the hairbrush because they keep you clean and both belong in the bathroom. It’s amazing that she can pick these things up so well yet have trouble with the easier tasks. She had a real problem with the rules. She had to repeat back what they were and couldn’t remember no. 2. She kept making things up and saying the number 1 rule in a different way, she was very inventive in this. She just couldn’t comprehend that she could just ask what the rule was. We tried to lead her into this several times and she just didn’t get it. Of course once we told her she then took it and went with it. That’s the thing with Beth, once she ‘gets’ something, it stays with her as her new rule of talking. She’s such a clever girl!

 
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Sick or not? That is the question

Posted by Sarah on Feb 17, 2010 in Uncategorized

Beth doesn’t appear to have been feeling the best lately. She did have her one day early last week when she vomited but that’s the only time that she appeared to be honestly ill. One of the things that indicates to me that Beth is unwell is that she doesn’t eat her food. We’re lucky, she’s always been a big eater and usually for breakfast she has 3 weetbix. On the odd occasion she’ll even stretch it to 6! I’m worried that maybe I’ve done myself a disservice. She has heard me tell people that I know she’s not well when she doesn’t eat her breakfast. Therefore when she doesn’t eat it I will think that she’s sick. Get where I’m coming from here?

Last night Beth was an absolute nightmare. We’ve had a couple of nights when she’s said that she’s not feeling well but last night was a doozy. She kept running to the toilet which is our ensuite. I’m not sure whether this was so that she could collapse on the bed in a faint or so that we’d think she had the runs.

I’m been stressing lately about the fact that she’s more than likely going to get her period soon, a matter that fills me with such dread that I can hardly bear to think about it. I have visions of that old movie Carrie where she comes out of the school toilets with blood all over her hands screaming “what’s happening to me?”  I have explained to Beth about getting her period which understandably freaks her out a bit. Usually the response is “but I want to be a powerpuff girl!” which I assume means that she doesn’t want to grow up. I know during her periods she’ll be fine but it’s the whole thing of knowing when it’s coming that’s the problem. Once she’s got it I can just let the aide know that she has to take Beth to the toilet at certain times and what to do. I’ve heard of people putting their daughters on the pill to predict when their periods are coming but there’s no way that I’ll do that to a 10 year old. Beth doesn’t have any problems with embarassment either. Often I’ll have to yell at her when I take her to the toilets at school, she starts pulling her pants down before she’s even in there. I can only imagine what she’ll be like with sanitary pads.

Anyway as I was saying, Beth was being a nightmare last night. When she was in bed she kept calling out to me and moaning. She gets quite bad asthma too but since using the flaxseed oil this had really improved as had her general health. We stopped this when we finished the treatment but I’m thinking now that we’ll just give it to her as part of her diet. I kept going into her room and she kept making herself cough and groan so I didn’t know what was actually wrong if anything. In the end I was getting a bit concerned because she kept grabbing at her lower tummy and letting out these dreadful noises. I took her to the toilet and wiped her myself, thinking that the dreaded P had arrived but no, nothing there thank goodness. I woke poor old Paul up and said that I had to be sure so he’d have to go and sleep in Beth’s bed. Well the little bugger came in and nothing, just lay there watching the tv! I called her on it, asking her why she had told lies to mummy about her being sick. She told me it was because she wanted to sleep in with me. Of course I was glad that she was feeling ok but annoyed that I thought we had gotten over sleeping in mum’s bed. It only takes one reminder like her being ill the week before. Once she gets to sleep there AND have a day off of school, easy peasy, now I know how to get what I want!

 
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What a Buzz

Posted by Sarah on Feb 13, 2010 in Uncategorized

I helped my friend Jen do a talk on autism at our local swimming pool today. We’ve been going to the Monbulk Pool for over six years now so I know the majority of the staff as does Jen as all of our kids have been having lessons there. Jen’s doing a teaching degree so as part of her curriculum she needed to do a talk. The staff at the pool also need to do a certain number of hours of training so Jen put her hand up (and mine!)

I was quite nervous as I’ve never talked in front of a group of people before, except for when I’ve done party plan and I was always extremely nervous then. I was surprised at how well it went. Jen did most of the talking and I felt like I played the slapstick sidekick in a way, butting in when I thought was necessary. I had a little bit of a turn on my own and remained seated, reading a lot of it. I adlibbed most of it but got the points across. I spoke about the wide spectrum, about all the kids being assessed and taught differently and about the frustrations as a parent of a high functioning autistic child and the lack of schooling available. We were both really pleased with the outcome, lots of the staff came up and said thanks to us and how much they enjoyed it. It meant a lot, I respect and like so many of the staff that I’ve got to know. One of my favourites is a gorgeous girl called Lucy who is always so friendly to myself and my kids, she said she got a true understanding of what autism is really about. We both got a lovely bunch of flowers at the end and agreed that it indeed had been successful.

On the home front we’ve had a pretty good week. Sensational Kids resumed on Thursday. I’m not sure what to do there regarding Occupational Therapy. Whilst Beth seems to like Melinda she doesn’t seem to be getting as much out of it as I would hope. Melinda doesn’t see the extremes in Beth’s temperament. When I discussed doing the ‘How Does Your Engine Run’ program with her Melinda was happy to try it but didn’t think that Beth could grasp the concept of regulating herself and the terminology. I asked her if she had explained to Beth what it meant. As I pointed out, if I had never heard of the program, I wouldn’t know what she meant by “is your engine running a bit slow today?” I would be more likely to say “You’re looking a bit tired today Beth, your engine must be running slowly.” This way it explains exactly what it means. Melinda was happy to try this. When I explained how I would put it to calm Beth down Melinda seemed surprised that she needed this. She didn’t realise that Beth has her frenzies that can be uncontrollable. She said she will check out what things are needed. I asked her to do this in a visual aide form with pictures of what Beth could use and to give me some copies for home and school also. When I discussed this with Rod he disagreed with Melinda’s thoughts in the fact that he believes that Beth could easily grasp the concept if it was presented to her in the right manner. We also discussed perhaps changing therapists to a male one seeing as she has such a good rapport with Rod. A change may be all that is needed. I have to get past the idea that I don’t want to hurt Melinda’s feelings on this. It’s not a personal thing, it’s just not doing anything for Beth.

Our speech session was good as always. Beth and Rod played a barrier game where they both had the same pictures which were magnetic. It was a picture of a supermarket and Beth put all of her foods on hers, then had to tell Rod where to put them. With the help of a list of words to choose from Beth did this quite easily. In fact she was so strict on this that she told Rod that he had missed a word when a food was between two men. She told him that between wasn’t on the list and as it was the perfect choice he had to add it. I’m so pleased with how her speech is going, I really couldn’t expect any better progress.

At school yesterday there was a prep/buddy picnic which the prep mums were invited to. As both of my girls are buddies, one at each end, I went along and sat with Bridie while Beth sat with her buddy. Beth was a bit unsettled with me there but not sitting with her and as I discovered that she had eaten her lunch at playtime (2 sandwiches, fruit, cheese and chips) I had to watch as she helped herself to everybody elses food near where she sat! I apologized to the other mums but they were pretty cool about it. Beth decided that she wanted to come home with me but I had to explain that she still had another 2 hours of Fabulous Friday left. As our kids played outside and the prep teacher gave us all the prep mum talk I had to keep myself from looking at the window as Beth stood there with her hands on each side of my face looking in at me.  I stayed for a while longer watching Bridie in the playground. I was a little worried when I went to get in the car and saw Beth sitting there, I’m not sure if she had been noticed missing as it was still playtime but I marched her back to her room and handed her to her teacher. I’m sure she wouldn’t have left the yard if my car hadn’t been there but it was still a bit disconcerting.

 
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Got a sick girl at home

Posted by Sarah on Feb 8, 2010 in Uncategorized

Poor old Bethie has been throwing up. Or should I say poor old mummy had to change my plans for today. Beth hasn’t been sick for ages. We had swimming last night and she did really well, lots of good strokes and her teacher Caprice said she was very pleased. When we got home though Beth vomited and then went and climbed into my bed. She slept all night so I thought she’d be ok, but then got up this morning and vomited again. Much as I desperately wanted her to go to school I knew she couldn’t. Never mind, I’ve got lots of days to myself now so can’t complain.

Whenever Beth used to vomit it was horrible because she’d just be sick wherever she happened to be. As mum’s do I have the kids in bed with me when they’re sick, especially vomiting. I used to have to put towels, doona covers and bed wee protectors all around her as Beth’d just vomit while she was lying down. I realised she was sick last night because she ran into the toilet and while sitting on the loo was being sick into a boat that the kids play with in the bath. She now looks for the bucket so it makes my life so much easier. Mind you, I remember frustrating the hell out of my mum by doing the same thing that Beth used to do.

Beth’s been a bit up in the air lately. The whole puberty thing is shaking her up a bit. I’ve been trying to talk with her about getting her period and her stock standard response is that she wants to be a Powerpuff Girl. I’m not sure if they just don’t grow up but each time we talk about her having grown up hair or periods she wails “but I want to be a powerpuff girl.”

We had a HAGS meeting yesterday. One of the mums, Gwenny, has started her son part time at Wantirna Heights Special School. This is the school that I was talking about that is going to expand to include a senior school at the old Ferntree Gully College site. Last year we had a member for parliament come out to one of our meetings to discuss several things about this venture. One was if it would include higher functioning autistic children as currently the primary school caters only for children under the score of 70. I’m not fully understanding of what the score is compiled of but I do know that Beth’s was over 70, therefore cutting her out. Bec’s son Will is in a similar situation. The test has various things that it measures so if a child such as Will is particularly gifted in one area it can bring the score up, therefore not showing a true reading. I know children that are much higher functioning socially than Beth is but have lower scores, therefore giving them an intellectual disability and the ability to go to this school. It’s ridiculous that somebody like Beth who is incredibly naive and like a child much younger in so many ways cannot access these schools. Secondly I wanted to know a date so that I would know if Beth would qualify.

I called Wantirna Heights yesterday to see if they would be ready in 2012 which is the year that Beth would be starting high school. They are relocating to the Ferntree Gully site and are hoping that it will be ready by then. The problem is that they are only taking high school children from year 7.  My thoughts were that if I knew that it would be ready by 2012 and we qualified then Beth would do grade 5 and 6 as planned. If it wasn’t to be ready by 2012 then I would repeat Beth in grade 5. If she doesn’t qualify then I would still repeat her in grade 5 as I would home school her, therefore giving me an extra year of sanity. I don’t really want to repeat her if I don’t have to as I see how different she is from the others and the older she gets the more difficult it becomes socially. I’d love for her to be in a school with others like her so that she could have friends on a par with her. Don’t get me wrong, she has some lovely friends at school but she never gets invited for plays or parties, at least with kids like her they’d be in the same boat so would hopefully form friendships.

We can’t find out until year 6 if Beth qualifies. I called Tanya at Menzies Creek to talk with her about this. When special needs kids go to high school they have an assessment done for their aide eligibility which is also the assessment done for the special school qualifications. This can’t be done until grade 6 so I don’t really see that I have any choice but to repeat Beth in grade 5 as we don’t know which way it goes. It sucks big time. There needs to be schools that cater for the middle of the road kids. Kids like Beth and Will can manage fairly well in mainstream primary schools if they are aided but the differences become glaringly obvious the older that they get. High school is vile for any kid, let alone one with a disability. And if you did choose to go the high school option the highest funding is 12 hours a week. It’s just not an option for me. Unfortunately most people don’t have any other choice with both parents working.

I tried to explain to Beth that she was so lucky to be able to be with her younger friends next year when she repeats grade 5. I’m not sure how she feels because all she could say was “but I just want to be a Powerpuff girl.” I hope that isn’t the answer for her when she is stressed about something, often it’s hard to tell. She’s pretty cruisy and takes most things in her stride but this is a biggie. That’s why I wanted to give her plenty of notice.

 
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I don’t have a giant – yay

Posted by Sarah on Feb 4, 2010 in Uncategorized

Even before Beth was diagnosed with autism we were going to another specialist – an endocrinologist. This man will now be referred to as the ‘too big’ doctor. Jeff Lindenmayer suggested that we took Beth to see one as she is such a tall girl and was way past the normal levels of growth on those charts that you compare them on. The too big doctor that he referred us to worked at the Children’s Hospital. It was a pain in the arse because I was pregnant with Bill at the time and Beth was a bloody nightmare toddler. We had to be at the hospital at 8am, not an easy feat when it’s peak hour. As it was a blood test Beth couldn’t have any breakfast. She loves her food and couldn’t understand why she couldn’t have any, and the trip to the hospital from here is over an hour.

Bev kindly came with me as I wasn’t feeling the best and didn’t know how I’d cope with my baby having needles stuck into her. (I always get Paul to do the immunization runs too!) We got there and they put the numbing cream Angel onto Beth’s arm. Well she had a reaction to that. Finally it went down and they had to hold her down to put the needle in her arm. It had to be kept there with a bandage as they had to draw blood every 1/2 hour. They asked if she would drink quite a lot of a horrible fluid and I said that no, she wouldn’t, did they have an alternative. They suggested that we give it a try anyway. When she spat most of it out they then kindly told me that because they weren’t sure if any of it had got in we would have to come back the next week to do it the other way! I was mighty pissed off I can tell you!

The next week off we went again. This time after all the problems with the needle Beth was expecting it to be bad so she wasn’t a happy camper. They then had to put a feeding tube down her throat to get the stuff in. Anyway, to cut a long story short they did all their tests and found nothing. I kept saying that I had uncles who are nearly 7 foot tall and even took a photo in from our recent trip to the UK. Of course we had to keep going back every six months, just to be sure.

Last year when I took Beth to see Jeff Lindenmayer he measured her and commented that again, she seemed way off the charts. He referred us again to the too big doctor so Paul took Beth there on Wednesday. She has had a huge growth spurt over the summer and has jumped several shoe sizes really quickly. I took her shoe shopping on Sunday and she’s the same size as me, size 9’s! Of course I bought her shoes that I like too. I wonder if Paul would agree if I suggest that Beth would look great in some nice leather boots. I’m allowed to spend money if it’s on the kids!

Paul called me on the way back from the hospital and he told me that Beth had nearly finished growing, she was going to be 5 ft 7. I was rapt. She’s only got about 5cm left to go. Apparently they have huge growth spurts as they hit puberty and lucky me, that’s started already. The boobs are there as well as the hair you know where. It’s scary stuff, especially as it means that her period wont be far off. Anyway, I’m just glad that she’s not going to be a giant. She’s got enough differences without being the huge girl / lady too. As she likes to jump around when excited I had to laugh when explaining to my friends at school why I’m so glad she’s not going to be big. Imagine a 6 ft something woman jumping around in excitement, she’d stand out in a crowd even more than she does now. Mind you, she doesn’t care so I guess I shouldn’t either.

 
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School’s back – woohoo!

Posted by Sarah on Feb 1, 2010 in Uncategorized

Don’t get me wrong, I love my kids to bits but the summer school holidays are just so bloody long! I’ve quite enjoyed these ones, we’ve had lots to do and I knew that at the end of them I’d have all 3 of my kids at school. I’ve been a bit worried about Bridie as she doesn’t talk with others but we’ve worded the school up and the school psychologist. I think they are going to try a social skills group to help her along. She came home last night beaming, she’d had a wonderful day so what more could I hope for. Bill had a great day too. He has a male teacher who he thought was fantastic so I was very pleased with his positive attitude.

I wasn’t sure how Beth would go. She likes the social aspect of school but does enjoy being at home too. She had a lot of issues last year and the beginning and end of the days. In the morning she would anticipate the bell ringing and as soon as it did she would run off to the toilet. If somebody didn’t come and get her she’d come back in a few minutes as if nothing had happened. I’m not sure what started this behaviour but they kindly indulge her as it is obviously her coping mechanism and once she’s done it it’s over. Similarly at the end of the day, Beth would start to get all funny about 3.15pm, for about 10 – 15 minutes before the bell went. Over the year she got a bit better with this thanks to Helma (her teacher last year) coming up with some fabulous strategies, always involving the other kids in the class. They would distract Beth by playing cards or singing songs. I’ll be interested to see if these behaviours roll over into the new year with a new classroom and teacher.

I met Beth’s teacher yesterday. I’ve seen her over the years as she’s been the grade 5 teacher since we’ve been at the school. It’s the first time that I’d spoken to her though. She seemed lovely and very open to my input into what strategies we should employ as far as Beth is concerned. I told her about the How does your Engine Run program. Rod had suggested that once we start teaching Beth how to manage her own energy levels then we could implement a system in the classroom. Meredith (the teacher) could for example have pictures with different activities on them. If Beth seems sluggish Meredith could say “Beth, your engine is running slowly today, what do you think you could choose to rev yourself up?” Beth could then pick something from the cards to do, thus boosting her energy levels. This could also be done to calm her down. I think it sounds like a great program if Beth can grasp the concept.

I picked Beth up early yesterday as we had swimming. Meredith said she had a good day though of course being the first day back nobody got much work done. Beth was doing PE and seemed to be enjoying herself. She has a new teacher at swimming – Caprice- who she seems to listen to and get along with pretty well. Debbie has stopped teaching on Mondays so she had Caprice in the last few weeks of last year too. She seemed happy enough to get back in the pool although she was a bit spaced out, laughing at things in her own head and jumping up and down in excitement. I’d love to get in there and try to figure out what’s going on in there. Is she really as excited and happy as she seems or is it another way of coping with something? I’d like to believe the former. Maybe one day she can tell me herself.

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