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Mixed emotions

Posted by Sarah on Mar 30, 2011 in Uncategorized

I went to a meeting last night. It was to talk about the prep to 12 high school proposal in Ferntree Gully for autistic kids. It’s where my heart tells me that Bethie should go. We are planning to send her to the local high school because we had been told that she would not be able to go there. Originally when I went to see the principal of the current primary school for kids with autism, it was thought that the high school would begin to open in 2012. The primary school would be moving in to the site and year 7 would begin either that year or the year after. They would then stagger each year level, going up to year 8 in 2013 etc. I was rapt as I thought we’d just make it. But no, Beth would be considered to be a year above in the special school system as they have to finish their schooling before they turn 18 and their funding ran out. I’ve always kept in my mind that if it was going ahead then I’d battle. I’d rather send her til year 11 to a special school and home school for a year that go to a mainstream high school with her and I was willing to argue the point.

Unfortunately I now don’t get a choice at all. The battle to get this off the ground has taken 4 years. It was decided to take over an unused school building/block that has been vacant since 2005. It has sat all these years untouched. I know there is a lot to organise and clearly they didn’t get the go ahead til yesterday but we’ve built a whole new building at our school in less time. Anyway, this means that the school wont be opening as a high school until 2013 or even 2014. I still held out hope that, if they were to open then as a full school – prep – 12 – that it was still an option if high school went belly up in say year 9. But no, the staggered start is going to be every year.

I’m gutted. In the back of my mind I still held out hope. I had a psychologist on the phone talking about all the testing for our high school aide funding, basically telling me that perhaps I should look at the special school system. It’s not like I haven’t tried. That is what I want for Beth. She suggested another school which is an hours drive. I told her it would be impossible, at one point I would have Bridie at primary school, Bill at high school and Beth goodness knows where. She made a point that there is a bus. I said that I don’t want Beth on the bus for at least 2 hours a day, she needs her downtime just like other kids.

One of the things mentioned at the meeting last night was how hard it would be for the high school if they started all at once, what with all the kids going through puberty. That’s what got me going. I thought of my Beth running into the toilet, pulling her pants down as she goes. At least if she was with others like her she wouldn’t be laughed at as much.

Anyway, not to take away from the fantastic result that these ladies got last night. Good on them! They are just parents like me who saw a need in the community and after 4 years made it happen. One has a son who also will not benefit, the other has a son who will. I’m so pleased for those who now will not have to go through the gut wrenching task of going from high school to high school wondering where the hell to send their kids. 2 of my friends have kids who go to the existing primary school, how wonderful for them to know that their kids educational future is secure, I’m so happy for them.

I know that by the time Bethie reaches adulthood there will be much more around for autistic people. I’m sure there are people with much older kids who think the same thing about kids like Beth. Autism hasn’t been recognised for that long and it’s just now, as it’s nearing epidemic proportions (1 in 90 now) that the government are starting to sit up and take notice. My job is to make my daughter’s life as safe and happy as possible. I hope against hope that high school will be a good experience for both of us. The only other choice now is home schooling. I just feel so sad that I can’t choose a school, not based on trends or courses or sports or music, but on safety. Surely that’s every parents right?

 
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It’s Bethie’s birthday!

Posted by Sarah on Mar 29, 2011 in Uncategorized

It’s Beth’s 12th birthday today. The kids are still home as Bill’s blisters are quite bad in his mouth and the girls blisters are on their last day (thank goodness!) I can hear Beth getting incredibly frustrated at the moment with one of her presents. She asked for a talking Bratz Chloe doll. When I told her we had bought all of her presents already she used the logical argument that we could use the money that my Aunty Diana sends us from the UK for her birthday money to buy it. I was so pleased with her reasoning that I bought one – from America. The problem is that I think Beth thought it talked as in having a conversation. Instead it seems to ask questions and Beth has to answer them. She keeps yelling questions at it! Never mind, she’ll work it out.

We’ve only had about 2 fights today. One was that Bill and Bridie were playing with the new toys and, God forbid, Beth wanted to play with those ones. I reminded Bill that on his birthday he didn’t have to share his new toys, or if he did he got first choice as to which one he wanted to play with. This resulted in a mini tantrum with door slamming. The other fight was with Bridie as she desperately wants to play with Bill nearly all the time. The rest of the time it’s with me. Therefore I obviously try to encourage the sibling playing. Bridie needs to be kept busy all the time. She gets bored very easily and doesn’t cope well with being born into a family of sloths. She’s constantly asking me to do things with her. Poor old Bill cops the brunt of this boredom.

The rest of the presents seem to be a success. She got a slinky dog, some zhu zhu pet accessories, some clothes, a nice horoscope canvas for her new room, some powerpuff girl figurines and a disney annual. Oh, and some slippers. I think she did very well. She loved her slinky dog and was reading a toy story page to him with Jessie, resulting in another fight as Bridie wanted to play with Jessie at the time. I love being a mum!

She’s chosen takeaway pizza for dinner (yay!) and Paul will have to get a cake on the way home. She’s also chosen pancakes for lunch. Unfortunately I’m still having problems putting photos on here. It was hilarious taking them. She reminded me of the My Name is Earl character Earl. He could never have a photo taken without his eyes being shut. I’d take one that looked great, then her eyes would be shut in the photo!

 
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Hand, Foot and Mouth disease

Posted by Sarah on Mar 28, 2011 in Uncategorized

I’ve got all my kids home with hand, foot and mouth disease. It was expected. After all there are only 2 weeks til the school holidays and I had packed in too many social activities to keep me going before then. It happens every holidays, I have one (usually Beth) sick the week before they start. Hopefully I’ll still get next week, fingers crossed.

Beth had swimming on Thursday which was terrific. Once again she worked really well for Paton. She’s an excellent teacher and I continually tell the management as I’m a big believer of credit where credit’s due. Beth really enjoys her lessons too.

On Friday Paul went to pick up a bag of stuff that I had gotten from Freecycle, an online organisation that you can give things away and request things also. I had asked if anybody had powerpuff girls stuff and had received a bag of books, a money box and a doona cover from a kind lady. Beth was rapt and spent all evening reading her 10 or so books.

We had a busy weekend socially. Saturday we had Bill’s basketball game (he got a certificate) then went out to lunch with my family. It was my Dad Bill’s birthday last week and it’s Beth’s birthday tomorrow. Beth got a lovely necklace from Dad and his wife Helen as well as a cat card. It meows the birthday song which amuses her no end. One of the many things that I love about Beth is that she’s very complimentary. She was telling Helen how much she likes her earings. She does this a lot, she’ll focus on something nice about somebody and let them know. Some adults could learn from this!

Sunday we went to Bev and John’s for Beth’s birthday lunch. Bev made a roast beef and Beth’s (as usual) was gone before anybody else was halfway through their meal. They gave Beth a requested glow doodle. It’s like a magna doodle which illuminates in various colours. It’s also see through so you can trace something underneath.

What a shame that Beth can’t be at school for a little while. Hopefully her blisters have actually been unnoticed for a few days as Bridie has had hers since last Wednesday and it’s now Monday and she still has them. Beth tries all the time to get out of going to school but as this week is her birthday she was looking forward to taking her bags of chuppa chups to share. Never mind, she can take it next time. Hopfully  I can figure out what’s wrong with the photos on here by tomorrow so I can post some photos of Beth’s birthday. Have a good day everybody.

 
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Sensational Kids March 23rd

Posted by Sarah on Mar 23, 2011 in Uncategorized

Bethie and I just got home from Sensational Kids. I took some photos of the working out that I’ll attach in another post as it’s being temperamental at the moment. I found it very complex and was impressed that Beth grasped some of the ideas. First Rod has asked her what was going on and she told him that she had done maths and was doing data and chance. She then said it was about days away and people. We assumed from the rough diagram that it was in fact a bar graph about absenteeism but she didn’t elaborate at all. Rod was saying that Beth has got some great ideas but finds it hard to explain. As is shown in the white board, her linguistics as far as engagement, promimity and vocal tone are quite good. Her quantity and quality however are poor as she will answer questions with one word. We also had to try to get out of the whole question and answer way of speaking. She will only give what is required if you just ask a question as opposed to putting it in a conversation. For example rather than asking when seeing a bird “What’s that Beth?” you could say “Look there’s a bird in a tree over there.” This will model how you would say this and stop her answering a simple “A bird” as an answer. She then may go on to say “Yes, it is a bird in a tree” and even elaborate on colours/size etc.

We then went on to Beth writing lists. She had to write 3 things she liked, 3 things I liked and 3 thing Rod liked. She asked appropriately what we liked and I lead into my answers. For example I asked what I did after assembly on a Friday with my friends and she remembered that I do art class. Once she had all the answers Rod told her that he was going to argue why he didn’t like her choices, a bit of a debate. I myself found this quite difficult to grasp so I thought she did an excellent job. She then had to argue against our things. Rod said he liked Luna Park and she said that it was scary and the ghost train was haunted. She suggested that I don’t go to art anymore and I argued that I like to see my friends. With Rod’s help she suggested that I do something else with my friends. She did so well as it is a difficult challenge.

After Rod Beth went in with Whiskers (not her real name) our occupational therapist. They have developed a great bond and Whiskers reported to me that they enjoyed having back and forth conversation with Beth really interested in what Whiskers life was all about. They did a chart with what makes Beth happy. Beth told Whiskers that we were picking up a guinea pig on the way home today, she was obviously very convincing as Whiskers spoke with me about it. I said that no, that was not even a thought we had discussed. All in all they seemed to have another great session.

 
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What a dill

Posted by Sarah on Mar 18, 2011 in Uncategorized

I feel like a bit of a dill at the moment. Our keyboard was getting stuck on the delete button, (no doubt thanks to food dropped) therefore sending all my emails to the deleted items bin. That was ok til I realised that all the emails that I had saved to read later had disappeared. All the unread crap was still in the deleted items folder but anything that I had read was gone. Not in the deleted items, not in the recycle bin, just not there. The annoying thing was that they were the emails that I wanted to keep. I got home today and it happened again. I called our computer guy and he had this new wiz bang way of looking at my computer via his. We went through things with him sending me an email. After looking on something else I said to him “See, that email’s gone now too.” I’m sure I heard him laughing under his breath as he suggested I go to the drop down menu on the right of the screen. It has the options to “show all messages” and “hide all read messages.” Hmmmm somebody’s been clicking on my inbox! I was so glad I hadn’t gotten him out to the house.

Beth amazes me. She can change things on the computer like this without fully mucking it up. Maybe she does it just to mess with my head! She changes the screen saver constantly, here and at her grandparents house. She fixed the heater in my car the other day. I have to stop myself at times when she’s ‘playing’ with something broken as she’s often showing me how to fix it. I’d love to be in her mind sometimes. I think it’d be scary, overwhelming, loud. I also think that with certain things there would be an amazing clarity, knowing that what she thought was spot on.

We’ve had lots of problems going to school this week. Every morning it’s a battle to get her out of bed. Twice she’s gone back to bed after breakfast. I’ve come out with her clothes and she’s snuck back in. She seems to be enjoying school but she clearly loves being at home with me more. I guess it’s a compliment but it drives me batty at the moment. It’s hard to tell whether she’s genuinely sick at times and can often only base my decision on how many weetbix she has consumed. Usually it’s 6!

We had swimming last night. Once again Beth responded well to Paton. Paton has changed her name from Caprice and it’s almost a weekly joke as I tell Beth to say goodbye to Paton. She smirks and waves “Goodbye Caprice!” Last night it was with an accent. “Adios Caprrrrice” as she rolled her ‘R’s. Paton is so good with her. I noticed last night how excited Beth was. Paton would be in the middle of saying something and Beth would just leap in the air and spin around, spraying water everywhere. Paton would wait patiently and continue her sentence. Bill came with me last night and commented on how well Beth is doing, he hasn’t watched her swim in ages. She seems to be really ‘getting’ it.

Not sure what this weekend holds. Paul is sailing all weekend so I think we’re going to all go and watch him on Sunday. Have a good weekend everybody! xxx

 
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A terrific meeting

Posted by Sarah on Mar 16, 2011 in Uncategorized

I had a HAGS meeting today. For those of you who don’t know, HAGS stands for Happy Autism Group Support. A group of friends and I decided to start a support group that focusses on the positives in having a child with autism. We had all been to support groups that the focus seemed to be people whingeing about their kids. Not that we have a problem with whingeing, we all do it ourselves, but not ALL the time. We’d met people who seemed to want nothing more than to ‘beat’ your life story with a worse one. It would make you feel that your worries didn’t count because somebody else had it much worse than you. It started off with 4 of us going out for dinner. We had such a good time that we joked that we should call ourselves a support group, then our husbands couldn’t complain about us going out to dinner all the time! It’s grown a lot since then (3 years ago I believe) with up to 30 members on our mailing list. We’ve done school holiday programs, mum’s nights away and frequent dinners. The funny thing is that often we don’t even talk about our kids with autism. We have a bond that has brought people from all walks of life together, we ‘get’ each other and more importantly we like each other.

We had a meeting scheduled today. It’s normally on a Monday but we had a special guest today and we adapted around others availability to see them. Katie and Bec came out from Dogs for Disabilities. We got our lab via a companion dog program through the guide dogs. She is in effect a Guide Dog reject, a John West dog for those of you who live in Australia. We were on the waiting list for 3 years but she was well worth the wait. As a guide dog she would have been dreadful. She pulls when she sees other dogs (not so much as she’s gotten older though) she ferrets through bins to eat whatever she can, she chews on things and she has been known to poo in people’s bedrooms when visiting (sorry again Tiff!) I had visions of a blind person reaching out for their chewed up stick, stepping in a pile of poo and being dragged across a road of traffic to sniff another dog’s bum! Despite all this she’s a wonderful dog. As far as companion dog duties are concerned she does bark if she sees Beth out towards the car when she shouldn’t be, or outside the front door at night. She doesn’t help in meltdowns or anything like that. We did decide from the get go though that she was to be a family dog anyway and she’s fantastic at that. She goes to her bed while we’re eating, in fact she starts to go there as soon as she sees me bring the plates to the table. She waits at the door to go out to the loo and barks to come back in again. She’s pretty fantastic.

Dogs for Disabilities is quite different from the Guide Dog program. They tailor a lot of it to your wants and needs. They can come out and help you choose the type of dog that you want. I love the fact that you can be your own puppy raiser. They will teach you how to teach the dogs. They will even come out and teach your existing dog if possible. People can choose a breed that they want. Of course some dogs aren’t good for this type of thing but Katie can advise which dogs are. She brought along a standard poodle, a groodle (golden retriever/poodle) and a golden retriever. The last one was like a big teddy bear, he was so cute. We’d like to get a puppy for company for Minka in a couple of years, it would also be nice to get one from a puppy for the kids as it’s a shame to miss out on all that cuteness. (Remind me of this when I’m up in the night tearing my hair out about all the wee spots on the floor!) It’s great to see somebody willing to develop a program for kids with disabilities, they’re starting to be seen and heard at last. If anybody would like any information please let me know and I’ll pass on the details.

 
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A lovely weekend

Posted by Sarah on Mar 14, 2011 in Uncategorized

Beth and I have had a lovely cruisey weekend. Paul has taken Bill and Bridie on a cubs family camp weekend. Beth would be a nightmare camping and I’ve never camped in my life – and never want to. It’s just not my thing. Being a long weekend, we’re had since Friday night to ourselves, and it’s now Monday morning.

Beth had another swimming lesson with Paton on Thursday night. She’s a terrific swimming teacher and Beth really responds well to her. She’s really starting to look like a swimmer now, she’s got the breathing on the third stroke thing down pat and is making lots of bubbles with her legs kicking. She gets rewards of somersaults or jumping in the deep end if she does well, and she often does. I’ll try to sneak a video camera in next time. You’re not meant to take film but as she’s the only one in the pool at the time it might be ok.

Friday night is when the campers left so we had a quiet night. In fact we’re had a quiet weekend. We’re very compatible, Beth and I. She’s happy to do her own thing which I allow within reason. I sorted heaps of stuff out, got some reading done and caught up on episodes of tv shows that I fell asleep watching. We had a sleepover of our own on Saturday night as Charlie and the Chocolate Factory was on tv and went til 10. Bethie watched it in my bed. On nights like these I realise why she takes so long to go to sleep. She just can’t seem to lie still. I would drop off and be startled awake by Bethie leaping around, even after the tely was turned off. Even if I left the room, I’d come back to find her spead out on her tummy over the whole bed. She just can’t keep still.

We’ve had all of Beth’s favourites that nobody else but me likes. Spaghetti Bolognaise is one of our all time favourites which we had on Saturday night for dinner. We had pancakes for Sunday breakfast and have had fruit toast every day for lunch. Nothing especially junkie which is good, just old fashioned favourites. Beth has an excellent appetite, something I’m eternally grateful for each time I speak with people whose kids with autism have food issues (lots and lots of them.) She loves her fruits and veggies. She has 6 weetbix for breakfast every morning, though this morning it was 3 weetbix and 2 pancakes. She doesn’t like to try new spicey foods which Bill does (though he’s a nightmare to eat veggies) but I can live with that. She does enjoy things like tacos and butter chicken so I think as she gets older she’ll try new things.

Well that’s about all I’ve got to share today. We’ve had a lovely quiet weekend enjoying each other’s company, all is well in the world! Hope you all had a good long weekend too xx

 
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Sensational Kids

Posted by Sarah on Mar 9, 2011 in Uncategorized

Beth and I have been to Sensational Kids today. Whiskers (not her real name) the Occupational Therapist wasn’t there today so it was just with Rod for Speech Therapy.

Beth was in a good mood today and was quite excited to be going to Sensational Kids. We had another Speechie observing today which doesn’t seem to bother Beth. Rod asked her to make up a story and tell him about it, draw it and then write 5 sentences about it. It became clear that Beth was chosing something from a movie when she started talking about ants and grasshoppers and life cycles. I asked her if it was from A Bugs Life or Ants and it was indeed from A Bugs Life. She did find it difficult to stray away from the story of the movie though we assured her that the movie could be the basis and she could make the rest up. They must eat seeds in the movie but she didn’t know what vegetable they were from so found that difficult. In the end it was established that she was on a farm and the vegetable she’d be planting was pumpkin. It was funny when Rod, writing upside down, missed the second ‘p’ in pumpkin and Beth had to correct him. The ants and caterpillars were to come and eat the seeds and the sun would be feeding the pumpkin.

When it came time to draw the picture Beth didn’t add in herself planting nor the pumpkin. Rod called her on it and she drew them in and circled them. Rod then asked if she had drawn them before he had suggested and she stated that yes, she had drawn them in in the first place. Although we shouldn’t have laughed we couldn’t help ourselves when she then told Rod he must be lying because she had done it and he was saying that she didn’t. It was said with a smirk so no malice intended.

Rod gave her ‘joining words’ so that her sentences weren’t just statements. She did really well with these with not too much prompting. She wrote “The sunlight feeds the pumpkin. Then the ants eat the pumpkin and they bring the food to the ant hill.” The word ‘then’ at the beginning of the second sentence meant that it was still relating to the first sentence. The ‘and’ was to extend the sentence. We are to do the res at home as Beth’s time was running out and she needed a Rod shoulder ride to the ball pit. It was a great session and I was very proud of my girl.

 
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A nice playdate

Posted by Sarah on Mar 7, 2011 in Uncategorized

We had Beth’s friend Erin over for a playdate on Saturday. We had lunch then went off to see Gnomeo and Juliet at the movies. Not a bad movie, the kids seemed to enjoy it. Beth was so cute, as we were walking along she was pointing out things to Erin. “This is where they chain up their bikes Erin, this is the water fountain that we drink from Erin.” After the movie we had hot chocolates and milkshakes as has become our custom.

When we got home things were a bit different. Beth finds it difficult to understand that friends do what each other want to do. It’s not all about her. We walked in the door and Beth said “Let’s watch Shark Tales now Erin.” Erin must have said that she didn’t want to watch Shark Tales. I called Beth out of her room and explained that she needed to do what Erin wanted as she was our guest. Beth’s response was that no, as it was her house, Erin needed to do what Beth wanted! She kept asking Erin what movie she wanted and Erin clearly didn’t want to watch a movie. I could hear Beth’s voice rising higher and higher as things like “Right, I’ve made a decision, we’ll watch Shark Tales” started to be yelled in a high pitched voice. I called her out again and told her in no uncertain terms that if she kept insisting that her guests do what she wanted then they wouldn’t want to come for a play anymore. I told her that I wouldn’t invite them either as that wouldn’t be fair on them. To her credit she took it on board and went back to playing nicely with Erin and Bridie.

After a while Bridie, Bill and Erin played on the Wii and Beth played on her DSi. Her and Erin made lots of recordable noises too, playing them back in different modes such as a high pitched squeak or in robot speak. They all had fun which was the main thing. It did however show me so clearly how difficult it is for our kids to understand social situations. Beth’s version of having a friend over is watching a dvd or them watching her playing a game, she still hasn’t quite mastered the art of back and forth. Small steps though, she certainly enjoyed herself and I think Erin did too.

 
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Peeved

Posted by Sarah on Mar 5, 2011 in Uncategorized

I’ve been feeling a bit pissed off this week. Nothing major, just a frustration at some people. I had a call from an old friend who had her son pre diagnosed with aspergers this week. She had a feeling as the signs have been there. She’s an excellent mother and deliberated for a while before taking him for an assessment. She decided to go for it as, if nothing else, it would help her to know what to do when his anxieties got the best of him. As those of us with kids on the spectrum know, anxiety is usually the main issue. It’s like it’s more extreme in our kids and counts for most of the behavioural issues that they have. Or at least that’s what I’ve found. Anyway, she was told that yes, he did seem to have ticked all the boxes. It doesn’t matter whether you think it may be true or not, the reality still hits you like a sledgehammer.

At the other end of the scale are the people who desperately want their kids to get a diagnosis. I know of a woman who, throughout nearly her whole role of motherhood has tried to get one. She has three kids and through kinder and school has, one by one, taken her kids to specialists. She’s asked questions of parents who do have kids with autism/aspergers and knows all the right answers by now. She couldn’t get it to start with as she didn’t know enough about it but finally she’s hit paydirt and has got her 3rd child diagnosed. I used to feel sorry for her and those like her. How sad that she wants sympathy so much that she’ll invent problems with her kids just so that she’ll get it. Now though, I’m just pissed off. Not only because her kids will have a label that isn’t necessary. Not even that she’s rorting the system to fuel her sickness. More that my friend is hurting. She was genuinely worried that getting a diagnosis might do more harm than good, that she didn’t want to put a label on her child that may not be necessary. He’s a gorgeous child, a little quirky, a little different, the things we love about him. In the end it was to help him, to help the family to help him and to help the school to help him. Not much in it for her at all. I feel like people like this other woman are making a mockery out of people like her. Unfortunately she’s not the first nor the last person that I’ll meet who do the same thing.

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