Autistic Children Blog

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

Every now and again I get emails from parents commenting on something I’ve written on here. I love getting feedback, it’s nice to know people are reading and are getting something out of my blog. The post I get the most comments about is about mainstream versus special school. I went back to find it and found that Beth was only 10 at the time of my writing, it was way back in October 2009 and Beth was still in grade four. It certainly wasn’t the first time I had thought about high school, I had started looking when Beth was in grade two or three, it’s amazing how many years I spent stressing over what the hell we were going to do.

There are conflicting opinions on what choice to make with high school. Some readers told me that mainstream school was the best option, that their child regressed when changed to a special school. Others were (and are) in the same situation that I was in then, deliberating which type of school would suit their child. It’s such a hard decision to make. There are pros and cons for both and it all depends on the individual school and the individual child.

I can only go by my own experience which has for the most part been extremely positive. Our special school has already taught Beth more independance, she’s happy to go there and she seems popular amongst her peers. Socially she seems to be getting there. She does like her own company and often spends her lunchtimes by herself but lately she has been telling me of playing with friends and has now joined the choir with a couple of them. And it’s only half way through term two of her first year. I know it’s definitely the place for Beth, for independance and for self confidence. This of course is not to say that it would necessarily work for somebody elses child.

In our case there has been sacrifices made too. I drive up to three hours a day most days, by the time I drop Bill and Bridie off at primary school, drive Beth another half and hour and then get home it’s usually a good 90 minutes. Then I have to leave at 2pm to do it all over again. I rarely get to spend time at Bill and Bridie’s school because I’m not there most of the time. The driving means that unless I am lucky enough to find a job near Beth’s school (and then only for five hours a day) there is no way I could work and make it worthwhile. I haven’t had a situation where myself or one of the other kids are sick yet, touch wood. This however was my decision, I chose to send Beth to a school that we are not zoned for. I could have sent her somewhere else and she could have caught the bus but she would have been travelling for over three hours a day on that bus and I didn’t like the school. My gut told me to go where we are and I’ve never regretted it. But it does tie me to the driving for the next six years.

These are the things that parents have to weigh up. It does matter how it effects you as a parent. I am lucky enough that at this stage we can just get by without me working. Many parents don’t have that luxury. Does your child have good social interaction with mainstream kids? My Beth did to a certain point but not on ‘their level’. One of my readers was worried that their son may regress in this area as he does have good social skills. This is something that has to be weighed up too. Perhaps dual schooling might work, perhaps you could trial this in the later primary school years if your special school is a prep to 12 school? Sometimes sadly there is not a choice, if your child doesn’t get funding or his or her iq is above 70. I find this ridiculous, that funding is not based on behaviour and emotional age but instead on if they did well in their iq test. Lots of these kids are good at memorizing patterns or may be bright in another area but can’t read or write or in Beth’s case will walk out in front of a car. My personal opinion is that if the choice is there, if you can choose between high school and special school, it’s not going to hurt you to look at your options. That way you can make an informed decision rather than assuming something that may not be true. You may be pleasantly surprised, and if one doesn’t work out at least you know a little about the other if you end up having to go down that path.

The other thing I noticed when reading the post from all those years ago was how far Beth has come. We hadn’t even looked at special schools at that stage, it was just me thinking out loud. It was about me worrying about how Beth would cope with getting her period (no worries at all) and how I was thinking even then that home schooling might be the only option we had. We even looked at repeating Beth in grade five to give me an extra year, either with home schooling or if the autism specific high school in our area that was planned wouldn’t be ready in time. (By the way, it’s still not ready and never would be for us). I’m so happy that we’re out the other side, that I know where Beth will be for the next five and a half years and that she’s where she should be. She’s doing better all the time and I’m so proud of her. It’s time to relax and enjoy the next couple of years before I start stressing about work options and housing and all the other stresses about being the mum of an autistic adult – nooooooooo!

Wow, what a week it’s been.  The hellhole that we’re renting while our house is being built has been overcome by fumes yet again. A couple of weeks ago we had maggots falling from the ceiling, on further investigation it turned out to be a dead possum. The maggot man told us that there were holes everywhere that needed patching up but it still hasn’t been done. Now apparently the smell is the blood from said possum which has seeped into the insulation and the plaster. Oh joy! We’ve only got a couple of more months here otherwise I’d suggest moving somewhere else ’til our house is ready. Anyway, he lifted the insulation and put bleach onto the plaster which has made the smell go away. Maybe now they’ll do something about the roof.

I’ve been trying to pack up but I’ve now been told I have a huge gallstone which has been hurting my back a lot. And of course I haven’t wanted to be here this week because of the smell. Anyway, I’ve been very frazzled and not coping very well. Yesterday I raced back to our primary school to catch the last few minutes of assembly only to end up in tears. I know I don’t have to go to assembly every week but I have gone every Friday for the last seven years and I don’t like to miss them. It’s not fair on my other kids that I can’t go to their assembly because I have to drive Beth all the way to Dandenong. I don’t want them to think that it’s always Beth that comes first. Yet I can’t be in two places at once. I know I made the decision to send Beth to her school and I don’t regret it one bit but sometimes I feel like I’m being pulled from all sides.

Anyway, I took Bridie to the psychologist again on Wednesday. She was still having assessments but Jill tells me that Bridie is scoring higher than average on most things that are IQ related. They do say there’s a fine line between genius and aspergers don’t they? She’s not a genius at all but I have heard that people with higher IQ’s have similar anxiety issues to aspergers kids. Anyway, she clearly has high anxiety so next time I go to see Jill it will just be me so we can discuss where to go from here. At least I feel like I am doing something.

Beth is continuing with her teenage attitude, calling me a Goddamned Son of a Bitch the other night! Little bugger, she wasn’t impressed when the ipad was promptly taken from her, saying that I had got it wrong, that she didn’t know what it meant, that she didn’t mean it, sorry, sorry, sorry, can I have my ipad back now?! She hasn’t said it since so hopefully she’s learned her lesson, at least until the next time.

Some good things have happened this week so I’ll end on a happy note. Beth got the class award at assembly this week. This was for ‘Listening and following instructions well during class time.” A great one for her as she finds it difficult to do these things. I’m very proud of her. Also, she’s voluntarily joined the school choir. I spoke with the music teacher this week as I had put Beth’s name down for drum lessons and hadn’t heard anything. He said that they had been inundated with applications and we discussed how much Beth loved music and performing so he may have suggested choir to her. She’s quite talented when it comes to music so I hope they recognise that.

Also on a positive note, I spoke with our middle school coordinator about starting a type of support group with the middle school mums. She ran it by our principal and he thought it was a great idea, so we’re starting a coffee afternoon on Tuesdays an hour or so before pickup. I really like some of the mums that I have met there but as we all live at different ends of the earth it’s hard to catch up. As we’re there for pickup it’s a perfect time to have a quick natter. Also, there a some parents who I’m sure aren’t sure about others. It’s a scary time when your kids start high school for anybody but when you’re in a setting that you don’t know anybody, and it’s not even in your local area it can be very overwhelming. There are no doubt other mums like me who haven’t had their kids in a special school setting either. All of these things combined can be hard to get your head around. Hopefully we can get a few mums to come along to our coffee afternoons so they don’t feel like they are alone. Friends are who have got me through this journey so far, I’m not sane at the best of times but they’ve helped me not go too crazy!

I went and watched Beth swimming again yesterday. Bill and Bridie had a curriculum day so I took them and Bill’s friend Stevie for a swim while I watched Beth. Stevie had had a sleepover and as most kids do in the water, they had a ball, climbing up to the slide over and over again. I had organised to meet another mum from Beth’s school for a cuppa while we watched the kids swim. Her son is at Emerson because he has epilepsy, this in turn has affected his IQ, hence why he is able to attend a special school. I wont use their real names as I haven’t asked so I shall call them Jenny and Ben.

Often we only get a few minutes at the end of the day to have a chat. The kids are usually panting to get out of school and we all have younger kids to pick up from their primary schools. I’ve made a few friends though, I know they are real friends because we’re even friends on Facebook! One friend in particular has a son with autism so we’ve talked about the various therapies I’ve tried over the years and we always have a good laugh together. I haven’t had much of a chance to chat with Jenny though, just enough to know that she’s ‘my type of person’ if you know what I mean?

Anyway, we were sitting having coffee when Jenny got called over by the staff. Ben had had a seizure on the side of the pool. He just had enough warning (10 seconds mind you) and luckily wasn’t in the water when it happened. Jenny dealt with it with such composure. After a few minutes went by the staff got a wheelchair and he was taken in to the first aid room. When Beth’s lesson finished her half of the students went to the other pool for a play. I picked up Jenny’s phone, purse and coffee and went to find her in first aid. Ben was having a sleep and Jenny was waiting to see how he was. By the time I left the pool I heard her hailing me from the car, saying she was taking Ben home and that she’d see me today.

I saw Jenny again at the pool this morning and she told me that Ben has a lot of these seizures. The longest he usually goes for is five days. He had brain surgery last year to try to help it but it didn’t stop them. Ben himself ran up to Beth and I, shouting hello to us. They usually get there just after us in the morning and Ben always comes up to say hi, commenting to Beth that she was the first one there one day. He’s a gorgeous boy, so outgoing and friendly. By the time I got home today Jenny had put on her facebook status that it was a good morning, no seizures at the pool. Then a little postscript a while later, she had spoken too soon, he’d had one just at the end of their play and she’d had to drive all the way back to get him.

I know this doesn’t have anything to do with Beth really, even though many kids with autism also have epilepsy.

Anyway, my point is that I was nearly in tears thinking of this beautiful boy having these awful seizures all the time. How unfair it is that we as parents are dealt these shitty hands that we have no choice but to deal with them. I was so impressed with how Jenny took it all in her stride, how that’s what her life is about and how she still managed to smile and joke that one day, we will get that coffee in. And I wanted to say to all the mums out there (and I know that many of you are mums in the same situation as me) that you are doing an amazing job. We are given these little blessings that push out buttons left right and centre but we still battle on because that is our job as mothers. It’s bloody hard work at times and I don’t know how many times I’ve had people say that they don’t think they could do it. But we do. We fall head over heels in love with these babies as soon as they are born and that never changes, much as there may be times that we don’t like them much! What choice do we have? We do the best for our kids because that’s all we know. So Happy Mothers Day to all you wonderful Mummies out there, pat yourself on the back and reflect how far your little one has come, they couldn’t have done it without you! xxx

Well my teenager has shown her teenage colours this week big time. She’s been rather putrid, mainly at bedtime.

Beth’s always been hard to get to sleep but will usually have one really bad night every few months. These are the nights when she doesn’t seem to sleep at all. She’s sleeping in with me now as I don’t know what she’ll get up to in her own room without me checking on her. She loves this but she hates me snoring or even breathing loudly as I drift of. We’ve had several bad nights this week. Here’s a sample of one of these delightful interations :

I am falling asleep so Beth makes a really loud noise to wake me up. This happens in the form of a harrumphing noise, to her bouncing on the bed, to her running from the kitchen back into the bedroom like a herd of buffaloes, with her pinching my nostrils shut or to her just yelling at me. This night it was all but the nose pinching. This happened several times with me saying that I’d turn the tv off. Now I know the tv isn’t the best thing in the bedroom at night (depending who you’re asking) but as Beth will wreak havoc if she’s not tired and has nothing to do we often have it on to fall asleep to. This also means that I can usually go to sleep and not worry. So if you’re an anti tv in the bedroom person then sorry but it’s whatever gets you through the night in my house! Anyway …..

Finally I said to Beth that I was going to turn the tv off if she didn’t keep waking me up. Usually we have a doozy of a fight on these nights and the threat of doing it on subsequent nights stops her from waking me. Most nights I say as I feel myself drifting off “Wake me and I’ll turn the tely off, understand?” and she agrees. Well not this night baby. I threatened it twice and finally (after the herd of buffaloes) I took the remote away and turned the tely off. Well the wailing that went on. “I make the decision on whether to have the tv on” or “You mean just for five minutes don’t you Mum, yes Beth five minutes, ok Beth five minutes is up” all in a high pitched voice. Or “Beth I’ve changed my mind, you’re a good girl, here’s the remote back.” She likes to pretend that it’s me talking, I don’t know if she really thinks I may not realise that I haven’t actually spoken the words! This went on for ages and she started using a really quiet voice which I hate cos she does it as I drift off to sleep. By then end I had not only banned the tv but also her ipad for the next day. And she just wouldn’t stop. I even threatened to put masking tape over her mouth, something that usually works as I did do it briefly once (don’t worry, it was the papery kind) and it worked a treat.

So there was me drifting off and I hear “Henry (the cat) pass me the remote so that Mum doesn’t see.” Or calling to the other side of the room “Goodnight ipad, I’ll see you in the morning.” I can laugh about it now but it’s so bloody tiring at the time! Every time I went to sleep I’d hear her in the loo or getting a drink of water, it could be 1am and she’d still be awake. Usually when this happens she’s good for the rest of the week but all week she’s been up late and giving me lip. Wednesday night she even said “But I always get my own way” when I wanted to watch Offspring instead of The Simpsons. And a little bonus we found last night was a nice big zit forming on her chin. Looks like teenagerhood is well and truly upon us folks!

I just thought I’d share a Beth funny with you all. When Beth was in Primary School she had a stock standard answer to shut me up. Every day I’d pick her up and say “What did you do today Bethie” to which she’d reply “Painting.” I used to get excited, thinking of all the wonderful artwork I’d be getting home soon. Of course Beth is my oldest and the first to do all these exciting things at kinder and school. I’m sure I’m not the only mum who still loves the artwork from their kids but thinks “Where the hell am I going to put it all!?” Anyway, after a while I realised that she was just saying this so that I’d stop asking her questions.

Thanks to meticulous research with visuals such as High School Musical Beth must have an idea of what high school students do. I asked her what she had done on Monday and she answered “I disected a frog today.” For a split second I did half believe her but then I saw the smirk on her face as she reached for her ipad and realised that she’d ‘bazingaed’ me. (For those of you not in the know, the character of Sheldon on Big Bang Theory yells BAZINGA when he’s tricking somebody.) She said the same thing on Tuesday. Today when I picked her up I asked her what she’d done today. Before she could say anything I added “and you can’t say you disected a frog.” Quick as a wink she answered “I desected a toad.” Cheeky bugger!

Beth’s school is doing swimming at the moment and I made the mistake of going to watch today. I’m always a bit delusional about my kids, I have a vivid imagination and always fantasize about how well they’re doing and people secretly watching them, and thinking how amazing they are. I remember going to a counsellor when I gave up drinking five years ago, saying how worried I was about what people thought of me. His words stay with me to this day “You’re not as important to other people as you think you are.” I of course chose to ignore these wise words and believe that not only am I incredibly important to all but that so are my children. This has it’s downsides. For example, if you choose to believe that people are watching you thinking what a wonderful parent you are you then have to believe that they also think that you’re a crap parent when you do something that isn’t so nice. Of course the counsellors words were right. After all I don’t think of other people much at all so why would they be thinking about me!  Anyway, I digress…….

I took Beth to school and as it was raining people were running late and they had to leave for the pool. I offered to drive her to the pool which is just around the corner from school as I was thinking I’d go and watch. I noticed after all the kids were in their groups that Beth was in the ones who were the least capable. Beth did swimming from a baby until last year so she knows how to swim, quite well in fact. She can do the breathing and arms but the problem is that she has to feel like doing it at the time. She loves the water so much that she jumps up and down a lot, often lying in the water or putting her head under when she’s standing. It’s so difficult to get her attention at times, then when she swims well it looks out of character as it’s like she has no idea. I coped with that ok. I got that they had to assess on behaviour and she was in a group class instead of the one on one that she used to get.

The other thing that happened was probably a small thing and I’m not going to let it get to me. One of the teachers asked me to go and get a child who was in another group having their play before their lessons. He was meant to be having his lesson instead. It took a while for the staff to know who the boy was and the first teacher came over and walked back with me. She explained that with the new kids it sometimes took a while to get to know all their names. She added, “unless they’re naughty ones”, smiling. I laughed back and said that they all seem to know Beth. As she was saying “unless they’re naughty ones” at the same time she then added “or slow.” Then she laughed and added “or really tall.” I half laughed and said “Well I’d rather tall than slow” and she said “absolutely” and it was left at that. Now I’m a bit of a dweller when it comes to things like that and I’m also incredibly oversensitive.  I guess I have to think about what the word slow means. Beth is very slow to pick up cues, slow to walk, slow to even answer questions. In fact she’s slow in most things, she just goes at her own pace and doesn’t really care if she’s not ‘with the program’ ‘cos she’s comfortable the way she is. So as a descriptive word it’s probably a good one for Beth. I think my problem is that in my mind the word slow means stupid. And maybe that’s my problem, maybe that’s not how other people look at it at all. So I’m going to let it go.

I watched the rest of the lesson and the play. Beth was oblivious to everybody else most of the time. All the kids were playing with each other and Beth was like a dolphin, under the water most of the time and coming up for air once in a while, only to go back under. I went to watch to see her interacting with her peers and it just wasn’t there. But you know what, she was perfectly happy doing what she was doing. She had a great time, doing her own thing. I just half wish I hadn’t gone. Sometimes I think it’s better to be oblivious, to believe what you want to believe. Because once you see the reality it’s hard to go back into your fantasy land.

It’s Wednesday of the first week back to school for term 2. I’ve had a busy week thus far so I apologize if I ramble as lots has been going on.

Sunday Beth woke up with a crook neck. Of course the sceptic in me thought at first that it was like her sometimes cough when it’s getting closer for school to start again. No, it really was sore. She has terrible posture and very low muscle tone, tending to lie instead of sitting most of the time. When we were at Bec’s last week Beth sat on an IKEA chair that has wooden arms but is padded in the body. It’s called a poang chair. It would be uncomfortable to lie on because of the wooden arms and it’s a little bit bouncy which suited Beth. Bec said her son Will sits on it a lot for similar reasons. After Beth woke up with her sore neck I got very excited, realising that I have a good reason to buy another piece of IKEA furniture now!

On Monday when I was hanging out for some ‘me’ time Beth once again complained of her sore neck. As she could hardly move it I had to get over the fact that it’d be another day occupied with children and make an appointment for her. We go to a great osteopath in Upwey where Beth originally had cranial sacral therapy which helps the blockages at the back of the neck that go to the brain. When we started speech and occupational therapy something had to give as we’re not made of money and we decided to cease the osteo. Also, when trying a new treatment or therapy I like to do one thing at a time, otherwise if there’s improvement you don’t know what did it. The speech and occupational therapy go hand in hand and have different benefits so we were happy to do them together. Anyway, when we went on Monday we got in to see somebody Beth hadn’t seen before called Ben. He was excellent. He did a full spine assessment, commenting on the fact that Beth has such low muscle tone and how her bowel movements were probably not working properly, there was in fact several spots in her back that were tight. He gave us simple exercises to do such as standing on one leg when cleaning her teeth to help strengthen her core muscles. He fixed her neck up with a little bit of massage and even managed to do a bit of manipulation. I was very impressed. The best thing was that at the end when I asked when he wanted to see Beth again he said that she’d be fine now. He said she should be much happier after the treatment and she certainly does seem to be. I’m thinking of taking my Bill there too as his neck has been a bit funny lately.

I went to see the psychologist today to see about the forms I filled in on Bridie’s behaviour. I spoke with Jill about the results which had very high levels in the anxiety fields and the demanding behaviours but fairly normal in others. We did the ‘cars’ test together which shows where somebody lies on the spectrum. The last question was whether I believed that she was on the spectrum or not. I told Jill that my gut tells me no, that I believe she has extreme anxiety but that she’s fairly good socially, she doesn’t have obsessive habits and she could function pretty well at school and even at home at times. Jill agreed with me and when we looked at the cars results it did in fact show that Bridie’s score was 24 and a score of 30 or over shows that you’re on the spectrum. Interestingly enough I had done a similar test on the internet which put me on the spectrum with 34! Jill didn’t leave it at that thank goodness and suggested that I bring Bridie in in two weeks and she does some further assessments. It did highlight to me though how easy it would be to rort the system. When doing the tests at home I recognised where some of the questions would be leading as obviously I had done them with Beth. Things like ‘lining toys up’ which is typical of a child on the spectrum was something that I deliberated over. Yes, Bridie does line toys up at times, but don’t all ‘normal’ children too. I could say yes but I knew it didn’t mean once in a while but repetitively. I could easily have said yes to lots of things and not necessarily been lying. Once Bridie had been seen it would no doubt have been clear that she wasn’t on the spectrum but some things are still based on parents answers. And when somebody has a child of two or three the majority of the assessments would be via the parents. If you knew the ‘right’ answers you could lie about behaviours and get a diagnosis for a younger child fairly easily. I guess it depends on the parents and their honestly. Sadly I have met people who are desperate for a diagnosis for their child, whether it is in their best interests or not. My friends and I have often discussed this and asked “Why would they want a child with all these anxieties and difficulties?” The only answer that keeps coming back to me is that they don’t want a child with these problems, they just want people to think that they have.

Beth was very excited when I picked her up from school today. Not only had she gotten an award but she got to pick a prize and she had chosen a Glee CD. The award is for her house which is called Cowan House. All the awards have written on them “In recognition of their Confidence, Persistence, Organisation and Ability to Get Along Well with Others”. Wow, well done Bethie, what a fabulous award! She is so proud and rightly so. Bill was so jealous when he heard her CD blaring in the car. He’s said a few times how he wished he could go to her high school. It’s nice for the other kids to see that being autistic isn’t that bad after all!