Autistic Children Blog

There’s been an issue at school lately with Beth fancying a boy in her grade. It seemed funny to start with and quite cute but last week our principal told me that the boys parents were concerned as it was getting out of hand. Beth wouldn’t stop telling him that she loved him and telling him to dump the girl that he is going out with. He had tried to be nice about it but it had begun to upset him, understandably. Our principal had asked if I could do a social story for the situation.

I did a generic story so it wasn’t all about Beth and this boy. I read it to her from the computer and as we read I talked about their situation. I explained that he couldn’t help how he felt. I validated her feelings and said that I knew she was hurt and it was ok to talk to adults about these feelings. I said that it wasn’t ok to go on and on about it and that he wouldn’t even like her as a friend if she embarassed him or hurt his feelings. She seemed to understand.

This was on Thursday. Today is Tuesday. This morning the boys mum came to me and said how well the social story had worked. She said that Beth had gone up to her son and not only apologized but had told him that she didn’t realise that it upset him so much. I was so proud of her. I didn’t even cover apologizing or explaining, thinking it was enough for her to stop the behaviour. Therefore she did this on her own. Our principal reiterated this, saying that the boy in question had spoken with her about how pleased he was. What a nice boy!

Tomorrow’s D Day! I’m so excited to finally be going to see Heatherwood special school. I’ll let you know how we go.

Beth and I just got back from Sensational Kids. Once again she had a pretty good session. First Beth had speech therapy with Rod. Last time they had made up a story with a picture of a girl with her bag of apples which had fallen to the ground. Rod started with the same picture this time. Last time it had also involved a boy pushing the girl and a bump in the road as reasons why she may have dropped these apples. They weren’t in the picture this time but Beth, rather than working on something new, tried to use them as reasons why the apples had been dropped. Rod told Beth that she had to use what was in the picture. He gave her some multiple choice questions to try and bring in the girl in the picture’s feelings. Once Beth had these guidelines she could write that the girl was sad. She did find it difficult to explain why the apples may not have been all right to eat after being dropped and kept saying silly things about aliens and the grim reaper rather than saying that she needed help. The ideas of the apples being bruised, dirty or broken didn’t seem to occur to her.

It’s amazing the way her mind works, you can tell that something is going on in there but it’s getting it out that’s the problem. For example this morning Bill was talking on the way to school about a movie with Will Smith. Beth piped up with the name “Jayden Smith” and then said “Justin Bieber” and the name of a song. I was trying to get her to explain what the relationship was with what Bill had told me. I could tell Bill was itching to tell me the answer but I wanted Beth to tell me. As I didn’t know the answer I couldn’t prompt her. She just couldn’t explain it so Bill told me. Jayden Smith is Will Smiths son and Jayden and Justin Bieber sang that particular song together. I figured it was something like that but Beth, though knowing the answer, didn’t know how to explain it to me.

Next Beth had Occupational Therapy which seemed to go well too. Whiskas (not her real name) had a little dial that they had made for Beth to take to class to show the ‘speed of her engine.’ There were activities too that Beth could do to make her engine run ‘just right.’ This is to regulate kids like Beth when they’re feeling sluggish or too hyper.  I also got a report to take to our year 6/7 review for high school.

I have made an appointment to go and see Heatherwood next Wednesday. I had a look on their website and it looks like it’s designed for Beth. As Beth’s IQ score was over 70 in previous years we didn’t qualify for anything but mainstream schooling but it has now dropped to 63. Much as I hate the lower score, this means that we can now look at special schools. The only thing that concerns me re Heatherwood is the travelling time, over an hour each way on their bus, but the pros outweigh the cons as far as I’m concerned. The thing I love for us too is that it’s only for mild intellectual disabilities so she would be with kids like her. She could make friends who want to have playdates and sleepovers and they could be equals. I hope it lives up to all that it seems because it sounds amazing.

Just thought I’d put in a Beth funny. We were on the way to swimming (she’s doing amazingly by the way) and Beth spotted somebodies tights hanging from the electricity wires. She starts laughing and says “It must be whacky Thursday!” All the way to swimming she picked out things that were a little bit strange and she would giggle to herself, look at me and say “It must be whacky Thursday.” She cracks me up!

I’ve been having a bit of a rethink in regards to a special school. There’s a school called Heatherwood that caters to special needs kids, the problem is that it’s so far from us. We’re in Belgrave/Upwey and they’re in Donvale. It’s not too far as far as driving goes but I’ve got 2 other kids to think of and their school is in the opposite direction. I’ve heard that there is a bus but I’m tipping that it’s at least an hour each way by bus which cuts out any downtime that Beth may have in the evenings. In the past however I’ve discounted the idea of different schools because of their reputation or because I haven’t thought they would be suitable before looking at them. I feel that I need to at least go and see what Heatherwood is like and find out about the transport – it may not be as hard as I think. I’ve left a message for them to call me back.

It’s such a hard thing to think about, high school. Basically it scares the shit out of me. At the same time I don’t want to do Beth a disservice by assuming that she wont cope. When I spoke with Heatherwood this morning they told me that there aren’t any waiting lists so we could apply as late as fourth term. I’m going to go and have a look. Our principal from Beth’s primary school has said that she would be happy to come along with me as she knows the ‘hard’ questions to ask. I want to see if there are kids like Beth. I don’t want her to go to a school with kids that are all low functioning as she will assume that role too. I want her to be an equal amongst others, I want her to have a social life outside of school and I want her to be happy to go to school. Surely that’s not too much to ask? If I like what I see I’ll take Beth and her current aide who has kindly offered to come with us. I will also take her to the high school we are looking at. I figure that we should know with our transition days to high school whether she’ll be happy to go there or not. I will ask her which one she likes best. The good thing about no waiting times for Heatherwood is that we can try Beth out at the high school and change her to Heatherwood if it doesn’t work out. I just feel so confused and anxious about all of this at the moment, I can only imagine how Beth is feeling.

I was talking to a friend in the staffroom at school this morning and I heard Beth come into the sick bay. She didn’t see me but she was in an argumentative mood and telling her aide what she should be saying. Beth kept saying that the aide had to call me, that she was homesick and wanted to go home. She’s been so unhappy lately, not wanting to go to school at all. I have no idea what’s going through her head. She got quite upset when the whole class was to go to a high school visit. I had told her about it that morning, explaining that it wasn’t the school that she was going to and that it was just a visit. Our principal called me to say that Beth had had a meltdown and what did I think. I said that as it wasn’t our high school there wasn’t any harm in her not going. I said that when it comes time to visiting our high school I would be going also, at least to get Beth in the door. I wont tell her we’re going so she doesn’t worry. I think it’s the fear of the unknown, once we get somewhere Beth is usually ok. I think I’ll do this with both high schools if the Heatherwood one is suitable, then she hopefully wont be as stressed. I’ll write on the calendar where and when we are going for future visits so she knows it’s not permanent yet. Poor luvvy, it’s stressful enough for most grade 6 kids thinking about high school, it must be so hard for her as we don’t really know what she understands and what she doesn’t. I asked our principal to be honest with her opinion of Beth going to mainstream high school. She said it worried her too.

I just had a look of the transcript of a speech Bill Shorten made, thought I’d share part of it with you. I was particularly touched by the bit at the end that speaks of a ‘Shut Out’ report from 2009 which says that the government relies on parents never being able to abandon their children. They say that the parents are being exploited by caring for their adult children until they (the parent) dies from fear of what could happen to their children if they are not around. As a parent it is one of my biggest fears. Clearly you want your children to outlive you, that is nature, but if nobody else can look after them with the dignity and respect that you do what choices are there? Hopefully by the time we are in that situation there will be housing and other facilities in place for special needs adults. I have heard of individuals being put into institutions and retirement homes simply because there was nowhere else for them to go.

We’ve just got back from Sensational Kids. Beth seemed a bit vague today but the work that Rod is setting for her is more challenging and she tends not to want to make too much effort when it gets too hard. Today Rod drew a picture on the whiteboard of a girl called Debbie who had dropped her bag of apples and was sad. Beth had to think of three things that could have caused this. She had said at first that she was sad because she had dropped them. Then number two Rod had to draw a little bump on the ground so that Beth could say that she may have tripped over the bump. She had problems with a third answer, even when Rod drew in a boy laughing. I think the confusion may have stemmed from Beth thinking that all three things had to be linked rather than three different scenarios. Even when she realised that the boy was the cause of the problem she still thought that it was because he had put the bump in the road. Rod encouraged Beth to ask me questions but she’s not quite there when it comes to giving me information. She kept asking me to help with the whiteboard but when I asked what sort of help she wasn’t sure what to say. I guess if she’s not sure of exactly what is asked of her she needs to learn to ask for clarification.

In the end Beth got some good sentences out, of course with her sense of humour intact. For example Rod drew a teacher who came in to clear up the situation and Beth thought she should be called Mrs Stein as she looked like a monster! The story was something like – Debbie was very sad because she had dropped her bag of apples. Don had pushed Debbie over on purpose. Mrs Stein came over and said “Don, don’t push Debbie over on purpose.”  Debbie put her apples back in the bag and went home. I was really pleased with these sentences. Rod says we are working on :

1) formulating a story using the right syntax

2) expanding on the ideas from life experience – postulating

3) understanding others motives/emotions and causaling

4) seeking clarification from others

5) requesting information from others and being specific

When Beth got an answer wrong Rod would make the ‘bu-bow’ noise like you hear in a quiz show and a ‘ting’ noise for a yes. Beth thought these were hilarious. Afterwards Beth went in with Whiskas (not her real name), the Occupational Therapist. Whiskas did some work with Beth on Beth’s favourite things again which they seem to enjoy. Beth then wrote it all down on a laptop. I have asked our O/T report to recommend the use of a laptop for high school which Whiskas was happy to comply with. I should get the reports in the next couple of weeks.

Phew, just got a bit of a fright. I went to turn on ABC Kids and the news was on. I looked up the TV guide and somebody had forgotten to tell me that they had moved it to ABC2. Thank goodness for the internet!

Beth and I went to choir yesterday. It’s facilitated by Donna Williams, an adult on the spectrum who is very well known. She’s an author and a singer, a sculpture and a painter, a very talented woman. She is my inspiration as far as independance for Beth is concerned as (from reading her books) she seemed to have so many more issues than Beth does. Donna has told me herself that Beth is much more socialised that she was and is doing really well.

Donna has organised a choir, along with a fellow aspie, Anthony, and kids come along to join in or, as was the case yesterday, wander around her garden to suss us all out and see if they want to. Yesterday it was just Kayla and Beth who were doing the singing. Another little girl came along but found it too much and a little boy spent most of his time checking out the garden but joining us at the end. As usual Beth dominated the group! I love that she knows what she wants but by the same token, she needs to let others have a turn too. Luckily as there weren’t many there, she got to have her way most of the time.

Yesterday they chose the banana song to start with. I think it’s one that Donna wrote and it just has the words banananana, nanananana nana na nananana in a tune we all knew. It’s a good one to get going as everybody swings from side to side while singing it, or jumps. Donna is great at taking cues and rolls with what is suggested. This song went for quite a while, doing it at a slow tempo, an angry tempo, an excited tempo. We even did it in a posh voice, all sorts of ways. Donna gets down with the kids at their level and they really respond. Beth was in a ‘making up words’ kind of mood yesterday and Donna just used these words in musical ways which Beth loved. We sang High School Musical songs, Tomorrow from Annie and Don’t Worry, Be Happy. I had to let go of my inhibitions as I sang and jumped around with everybody, having a thoroughly good time! We were all exhausted by the end and sat down to sing a couple of slower songs before saying goodbye. I told Donna about a place in Boronia that has advertised recording sessions for kids with special needs, it’s a sound studio I guess. They can cut their own CD and I was thinking the group could get together and do a song there. It’s not far to go and it’s only $15 for a session. I’ve sent the information to Donna.

It’s Monday today and I can already hear Beth having a cough, getting ready to tell me that she can’t go today. We’ve got Sensational Kids on Wednesday but as that’s 2 days away and not tomorrow it may not be enough of a carrot to go today. It’s lunch order day so maybe the hot jam donut she can have will be enough but I doubt it. Oh well, best get ready for my first fight of the day!

Well just got home from my Parent Support group meeting, or are they called Student Support now? Either way, it was a meeting between myself, the Principal, the Teacher and Beth’s aide. I was very proud of myself as I only cried once, and even then only a little bit!

I think it went really well. Beth was happy to go to school this morning which was a bonus. She did a book yesterday on her favourite topic – Disney movies – which she proudly showed us last night. We spoke in our meeting about using her passions in her work. For example they could do an essay on the disney movies or do a presentation – Beth loves to be the centre of attention. She also enjoys looking things up on the internet. We talked about her using a laptop instead of writing everything as they say that kids with autism (or at least ones that find writing challenging) often concentrate so hard on their handwriting that they can’t focus on what they are writing about. My friend Cat says that her son who started year 7 this year is using a scribe for his maths work, therefore doing work that he couldn’t do before, simply by letting somebody else do the writing for him. I explained today that I was going to push for this in high school so it would be great to get it into practice now.

One concern I have is that Beth is apparently now trying to shut out another teacher’s voice. This is the grade 5 teacher who she had last year so I don’t know what’s happened. We’ve stopped her going to music as she had an issue with the teacher’s voice and I’m hoping it’s not going to become a recurring thing. She doesn’t know that she’s stopped going for good and we discussed today about the music teacher sitting down with Beth and talking through what her issues were with music. We think it’s from choir practice where there were lots of coordinated movements as well as singing which can be difficult to do. We thought that if the teacher explains to Beth that that wouldn’t always be the case and try to work through it then Beth may return to music at one stage, something that she used to love. It is in a different room this year and is quite echoey which may compound Beth’s sensititivies. As far as the other teacher is concerned, Beth has her for art this year and is also in the classroom next to her. We agreed that although we don’t know what the issue is we need to try and work through it. Beth can’t dictate everything that happens and I worry that if she thinks we can just remove teachers from a situation then high school will be a nightmare. We have a small school and you can’t avoid every teacher, whether it be during art or assembly or anywhere really, they all do yard duty. And she’s not had a problem with her for the last 6 years. Who know’s what’s going on in her head.

We also agreed that the teacher would keep me informed of anything they were doing with Beth such as a passion project on a subject she likes. For example they could say that she will be researching something from a Pixar movie the next day, that way I have it as my ammunition to get her off to school that day. In art they are studying Australian natives, I suggested that she take in her bug books that she loves and find ones native to Australia. Then she would have something to look forward to during her art class.

The aide was reassuring to me when she said she knew of some of the staff at the high school where we are going. She would be going to the transition days that we plan and said that they are excellent with their special needs students and are not dissimilar to our primary school in their care and concern of the children.

All in all I felt happy when we came out of the meeting. I feel that this year is about keeping Beth (and myself) anxiety free and by doing this setting her up for a positive transition to high school. By using her passions she will have a reason for going to school and in presenting it to the other children she will enjoy a bit of the limelight. It was lovely to hear her aide speak of the other kids in the class trying to encourage Beth to join in in music. She said they say things like “We miss hearing your lovely voice Beth.”
They are such a great group of kids with her, so protective. I hope we find some like that at high school.

Today was the first day back to school. What a stressful mornng it was here! Beth has got some sort of issue with school and just doesn’t want to go. It started on Monday as I knew it would. She woke up coughing, obviously not realising that because Easter was on the last weekend of the holidays there was no school til Wednesday. I even called her on it, saying “You’re not back to school ’til Wednesday Beth so you can knock it off” which she did. You could see the relief in her eyes.

This morning she woke up and started straight away. For about an hour she carried on. She coughed and spluttered, she told me that school didn’t start yet, she went back to bed after breakfast. I even caught her with her hands around her neck so that her cough would sound more impressive! I can laugh about it now but at the time it’s so stressful. I told her that it would be an easy enough day with it being the first day back, that there was only 2 more days left and that the Friday wouldn’t be hard because it’s fabulous Friday. It didn’t matter, she just didn’t want to go.

In the end I told her that if she kept going on and on about it that she wouldn’t be able to go on the computer tonight when we got home. I know that one of these days I’ll have to follow through with this as she nearly didn’t make it this morning. It’ll be the night from hell but sometimes you have to go the hard yards. I spoke with her teacher this morning and he spoke about easing off on Beth, saying that he knows that she can do the work so he pushes her for it. The problem is that I like that, she needs to be pushed, otherwise she’ll sit and do nothing. She did say that she didn’t want to go because she had to work. Also, I don’t know what might have happened in the past that she hasn’t liked and built up in her mind. Someone might have said something mean and she seemed to get over it but she’s avoided that place, then that area, now the whole school. She often doesn’t remember what upset her in the first place. I’m 100% sure that she’s not being constantly bullied, I’m not saying that it doesn’t happen but I truly don’t believe that it’s happening every day. I just don’t know what to do. If she’s like this in high school too then that’s when I’d opt for the home schooling but I’m not doing it this year. She’s in a safe and comforting school, all the kids know her and for the most part she’s happy there. And it’s her last year, her exciting year of grade 6. Also, we’ll be in the new house next year so I’ll feel more equipped to handle home schooling, I need to get my mind around it.

I’ve got a meeting tomorrow with the Principal, Beth’s teacher and aide. I spoke with her teacher this morning about drawing up a weekly chart with what’s happening on the following days and putting something to look forward to on there. I feel like we’re all flying blind in these situations, who knows what’s going on in her mind. I know I hated school and constantly said I was sick to stay home. Maybe she’s just like me and loves being at home with me? Maybe it’s payback for being such a shit of a kid myself?! I’ll let you all know how the meeting goes.

I just finished watching the movie The Miracle Worker about Helen Keller. I love a good tear jerker. Although my Beth isn’t deaf or blind it still brought forth all the emotions that were shown in the movie, how to unlock that little girl’s potential. That’s how I feel every day. Sometimes I see a glimpse of her greatness and I’m in awe of what she actually could achieve if I knew the path to show her the way.

I read an article in the paper yesterday which made me go cold. It was about a facility in the United States which used shock therapy as a treatment for autistic individuals among others. Kids lived in at this place and were subject to ‘2 second bee sting type shocks’ every once in a while to curb their behaviours. They were made to sit in a chair and be encouraged to do these bad behaviours, then be shocked when they did them. In other words they were shocked by doing what they were told. The end result was to have them sitting in the chair passively, clearly too scared to do anything else. It made me feel sick to read it. Sure, there are some behaviours that frustrate the hell out of me when Beth does them but I also know that a lot of them can’t be helped. What a barbaric way to treat autism. One man spoke of his time there, saying that people were made to get out of bed and shocked numerous times after somebody had played a practical joke and said they had left the grounds. None of the people treated had gotten better because of this, in fact many of them stayed in the facility year after year.

I did however, through my revulsion, feel such pity for the parents having to resort to these measures. They told of children who self mutilated so much that they felt there was no choice. One child pulled his own teeth out, another kept jumping out of a moving car. I know personally of children who do both of these things. I don’t know what I would do if my child was that severe. I’ve always said that I’d try anything with Beth as long as it wasn’t invasive and it didn’t hurt. How can this not be considered child abuse? If smacking children is child abuse then electric shocks must be torture surely? I can’t see anything that would make me resort to these measures. I do however have a child that in these terms is not that severe. I have family and friends who support me and medication to keep me somewhat sane, and I still find it bloody hard. How awful for a parent to feel that this is their only choice. Thank God for my Bethie.

I’ll end this post on a positive note. I forgot that when we were away in Inverloch the next door neighbour Anna popped in for a visit. I was trying to get Beth to put her pyjamas on and was very aware that there were 6 other kids in the house who didn’t want to see her starkers. My Bill hates it when she jumps around naked. I went to her room to get her pjs and when I came out she was standing there with no pants on at all, just her t shirt, chatting to Anna. After telling her that no, you can’t stand naked in company, I got her dressed and sent her off to bed. We were all having a good laugh about it. Anna said even though she was standing there in all her glory she was speaking very well, complimenting her so nicely on her glasses. It was lovely that it was completely irrelevant to Anna that Beth had no pants on!