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Scarey times

Posted by Sarah on Jun 25, 2012 in Uncategorized

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!

 
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Driving me crazy!

Posted by Sarah on Jun 23, 2012 in Uncategorized

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!

 
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A great week

Posted by Sarah on Jun 15, 2012 in Uncategorized

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

 
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A nice quiet day

Posted by Sarah on Jun 9, 2012 in Uncategorized

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!

 
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Been a bit busy, sorry!

Posted by Sarah on Jun 1, 2012 in Uncategorized

Sorry I haven’t been on here for so long, I’ve been busy lately with sorting stuff for the new house and trying to sort the old house out. I’ve been going to kitchen places to organise the kitchen, splashbacks and benchtops, to tiling places to choose the tiles for the bathroom and to IKEA numerous times to buy cabinets and then the legs for the cabinets. Add to that psychology appointments for Bridie and doctors appointments for myself due to my massive gall stone, I’ve been flat out. Oh and of course I have to fit my socialising in there somewhere, something that I make sure I don’t miss! They say a woman’s work is never done, especially if she’s never home!

Anyway, things are going along rather well. Beth is happier than I’ve ever seen her. She still tries to bung on the coughs and sore legs etc quite a lot but not with the same commitment as she had last year. Of course she’d love to have the day at home with me but she does enjoy what she is doing at school. She’s been doing cooking, she loves art and they did a concert performance on Wednesday where she had to dress like a rock chick. She knows what’s on each day and tells me that it’s elective day or that it’s the day they do art. She tells me each night what she’s done that day and has started telling me the kids that she’s finally playing with and going to choir with. Every day I’m happier and happier with my decision to send her to special school, it’s been just what she needed at just the right time.

The only bad thing happening at the moment with Beth is her lack of sleep. Whatever time I wake in the night she seems to be wide awake. She’s sleeping in with me as if she was in a room of her own I wouldn’t know what the hell she was up to in the night. She often gets up to get a drink which in turn means that she needs to go to the toilet. And she hates any snoring sounds, even just the deep breathing that you make when you are just dropping off. We had Bridie in with us the other night and I was just falling asleep when I felt Bridie move next to me. Beth had pinched her nostrils together to stop her from snoring.  This really worries me for the future. What if she eventually is able to have a child and she doesn’t like being woken by it in the night? What is she likely to do? I don’t think she gets the concept that it is dangerous, I think she could do the unthinkable and wake in the morning to think that everything was ok. Anyway, there’s no point stressing about that now. Beth constantly wakes me to stop me from making noise, I had to threaten the ban of the ipad once again as there’s nothing worse than dropping off only to hear a loud noise that startles you. I’m thinking of taking her back to the paediatrician but I don’t really want to keep medicating her. She’s already on an anti depressant, a preventative tablet for asthma and the pill to control her frequent, long and painful periods. Unless they could combine the anti depressant or give her one where the side effect is tiredness I don’t really want to think about it. Still, it can’t keep going like this.

I went back to see the psychologist about Bridie and we’ve established that she’s definitely not aspergers but has got high anxiety. We’re still doing the assessment stage with a questionaire going out to her teacher. I find it interesting that similarly to kids with aspergers, Bridie has sensitivities to certain clothing. Often in the mornings we have issues with what socks she’s going to wear. I’ve noticed that if she’s particularly anxious about something that day this seems to be worse. It’s hard though, if she wore them the week before with no problems, why is she not able to wear them today? I have to try to figure out whether it’s anxiety about something coming up or whether it’s her being argumentative. When I’m feeling calm I try to see her side of it and tend to err on the side of caution, believing that she truly can’t stand the bits of cotton or bally bits. It’s safer that way and really, I don’t know what’s going on in her mind. I don’t want to belittle something that is clearly bothering her.

I’ll leave you with a Beth funny. I’m loving that she’s liking communicating with me much more at the moment. Often when she’s playing with the ipad in the car she’s telling me what she’s doing or who she’s reading about. Of course she expects that I can read her mind and that I know all the same things she does about the Disney characters and movies that she studies religiously. I get this as I had a similar obsession with soapies as a child, something that I still do at times! One night we were lying in bed and she was telling me all about something but she did the whole think in a spanish accent. For the whole night. So not only did I not really know what she was talking about but I couldn’t understand half of what she was saying! She’s so entertaining!

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