Autistic Children Blog

I just had a brief informal meeting with our principal. Still trying to work out what’s the problem with Beth lately not wanting to go into the grade 6 room. We figured it could be a number of things. 1) She’s anxious about going to high school, 2) Her anxieties about going to high school have heightened her senses, therefore making the class too noisy, 3) the grade 6 room is at the end of the corridor, therefore having an outside door to contend with too, 4) kids move down the corridor to the grade 6 room then disappear from the school, 5) somebody is being mean to her. Really, we’re clutching at straws.

I’ve sent a message to Rod at Sensational Kids hoping that in our next session he could address Beth’s anxieties, or pass us on to the psychologist there who may be able to get the answers out.

Our principal read my blog over the weekend and made a point which I hadn’t really thought of. When I had mentioned that perhaps Beth didn’t really care if she finished her primary school years with her peers I didn’t take into account that maybe her peers might care, or even more so, her teachers. I hadn’t meant to imply that they wouldn’t, I just hadn’t thought about it from that side at all. They’ve all been with Beth for the last six and a half years and would want her to graduate with them. I’m just feeling so anxious about the whole situation and was venting my feelings out as I do.

We’ve got our meeting with the Education Department this afternoon at school. I’ve got reports from Sensational Kids, we’ve got the IQ test, the Vineland and whatever else we need to say how dreadful my child is! Unfortunately that’s what we need to a) get her an aide for the time she needs in high school or b) get her into Emerson. I’ll get a copy of those reports from the principal so that I can complete our application for Emerson. I’ve left a message for Rod at Emerson too, to discuss being accepted earlier than term 4. I don’t necessarily want to do dual schooling but I would like her to perhaps start going there one day a week in term 3? She can’t even start transitioning until term 4 if the decision isn’t made until then. It can’t hurt to ask can it?

I’m feeling a bit all over the place at the moment. One minute I’m feeling positive and looking forward to the future, the next minute I’m in tears, wondering what’s going on with my girl, what’s in her head that makes her not even want to go into her classroom at the moment? Has something happened, has somebody been mean to her? Or is it some noise that has been exaggerated in her head so much that she has to avoid the situation and place that it happened in? If the original issue hasn’t been noticed and it’s got this out of hand it’s unlikely that we can resolve it either. Beth herself can”t seem to tell me what the problem is and she may have even forgotten it’s origin, only knowing the fear she has and having to avoid the place at all costs.

I went to see the osteo this morning and was talking with him about it. I’ve known him now for about 6 years and used to take Beth to see him for cranio sacral therapy. I was explaining how I didn’t want Beth to miss out on graduating with her fellow grade 6 students and that if she did part time at Emerson this year then she’d get the  best of both worlds. Robin (the osteo) said, “not meaning to be rude but do you think she’d really care?” I thought about it and realised that maybe it’s me that’s the issue there. Maybe she in fact doesn’t care much about that side of things and it’s me who wants her to complete her primary school in a positive and fun way. But if she’s not enjoying going to school anyway, where’s the fun?

I’m in two minds about the idea of dual schooling. When Beth was at kindergarten she also went to an early intervention service called Irabina. When we had been at Irabina exclusively she really enjoyed going but when she went to both she grew to hate going to Irabina. Before this I had always planned sending Beth to a special school but when I saw how much she enjoyed mainstream kinder I realised that was what she needed. She would pick up the other autistic traits of the kids at Irabina and I feared that if she didn’t have the role modelling of so called normal kids she would get worse in her behaviours. I still don’t regret sending Beth to a mainstream school, especially our wonderful little school, but I think if I had the option I would have transferred Beth in grade 4 or 5 to a special setting, when the gap between her and the other kids at school began to widen. Anyway, that’s neither here nor there because we’ve muddled through and on the whole it’s still been a positive choice.

My concern with dual schooling is that it may scare her off of Emerson if she has both schools to go to. I think it will be difficult for her to adjust to not having a full time aide to start with, what if she realises she prefers going to our mainstream primary school and says that no, she wants to go back there full time. If she thinks that way then sending her there next year full time will be something we will both dread and her anxieties will go through the roof.

In a perfect world Beth would transition to Emerson with the kids she’ll school with next year, graduate with her peers this year and be looking forward to going off next year. Unfortunately that’s often a wishful pipe dream and I have to count on the worst and be pleasantly surprised if things work out. I’ll call Rod on Monday at Emerson and get his take on everything. Even if she was just to go there next year she’d have the transition days this year. If she was to dual school though I think it would be three days a week at Emerson and two days a week at mainstream. Is it worth it to get her through to next year? I just don’t know.

It’s been a pretty quiet time here as far as Beth is concerned, at least up until today. We’ve been muddling along.

Monday morning I took Beth to school. In the mornings she gets there, puts her bag away and then usually goes to the sick bay where she reads a book until the bell goes. She then goes off to the toilet before making her way to class. I could hear her on Monday carrying on and saying that she wasn’t going to class, that she was going to the sick bay. I was just leaving but I hotfooted it up to the sick bay and confronted Beth. I told her that I was fed up with her attitude and if she didn’t go to class I would tell her teacher to let me know and she wouldn’t be allowed to play on the computer that evening. She objected but eventually relented and seemed to have a good day.

Today when I got to school to pick her up I had her teacher come to talk to me. Apparently she refused to go into the classroom all day. She went in to get her playlunch but then wouldn’t even go in to get her lunch. I don’t know what the hell is going on and neither do they. I don’t know whether it’s anxieties about high school next year or if something has happened in the classroom and it’s snowballed and made into something bigger that it really is. I asked her about it and she said it’s because she didn’t want to go to J-Rock practice. Said practice wasn’t actually on until this afternoon though and it wasn’t in their classroom. I’ve told her that she can’t play on the computer or watch dvds at all tonight as her punishment.

When I got home today I tried to call Rod at Emerson school to speak with him about dual schooling. When I first went to have a look there they told us that the reviews are done every fortnight for kids, then when we went back I was told that the kids going in to year seven weren’t decided until term 4. Maybe if we transferred her now she would be a two week review? If I was able to dual school her she’d be there three days a week and at our mainstream school two days a week. She’d still sort of finish her schooling with the kids she’s gone through primary school with and graduate with them too. She’d also be with the kids she’d be with next year and this would be explained to her so that there would be no surprises coming up next year. Rod wasn’t there when I called so I’ll call back again on Monday. Timing wise it’s good too as Monday is our meeting with primary school to sign off on our 6/7 review for aide funding so I can get the IQ figures needed for our application.

Beth had her last swimming lesson yesterday. I was wonderinng about when we’d be finishing as I really like the teacher that she’s had for the past couple of years – Paton. She’s been a fantastic teacher and Beth has learnt more from her than in the 6 years of lessons beforehand. Paton told us yesterday that it was her last day. I knew she was only working one day a week and really only to help out with Beth which I really appreciated. It’s sad though as all my kids have done swimming lessons there off and on over the past 8 years and I know all the staff. Beth was my last one there. I can only imagine how I’ll be when Bridie finishes at our Primary School, I’ll probably be a basket case! I figured that as Beth was going off to high school next year anyway it was a good time to stop the swimming lessons. Beth was very cute when saying goodbye. Paton said to me that she would miss Beth and Beth said to her “Oh, I’ll miss you!” Then she said “Give me a hug.” Beth’s not one to show spontaneous affection so it was a genuine display.

One more week to go before the school holidays. Cross your fingers for me that none of the kids get sick this week!

Beth and I just got back from Sensational Kids. She’s a bit floppy today, I don’t think she’s feeling 100%. I spoke with Rod about Emerson School and he seemed to like the idea. He was saying that eight out of ten parents he speaks to professionally have the opposite idea about their kids. He said that often parents have much higher expectations of their children than what the kids are capable of. He said he has even lost clients when he has written a report or suggested that the parents send their child to a special school. It’s funny, I always had the perception of special school to be the easy option to take as opposed to mainstream. Once I went and saw Heatherwood and Emerson however it changed. It showed me that they are far more independant in a special school setting than in mainstream as they have to learn to be independant. I’m still glad that we went mainstream primary school but am certainly ready for the support that we’ll get from a special school for high school. I don’t know where I’d start if I had to organise things like work experience or training in an area that she may be able to work in. It’s certainly opened our horizons and shown me that Beth can indeed be independant to some degree one day.

Todays speech session was about why Beth was going to Emerson next year. I found it an eye opener. Rod asked Beth why she was going there. She answered with things like “They have a cute dog” or “they have an art room.” She kept repeating these and was getting silly, a sure sign that she finds the question difficult. I suggested to Rod that perhaps she doesn’t know how to get the answer out, that I was sure that she knew it. He said that no, often with kids like Beth they may even know the right words but that doesn’t mean they understand the ‘why’ behind them. If we had discussed that our primary school doesn’t go to year 7 she could repeat it if asked but may still not know what she is really saying. Even when Rod gave her multiple choice answers she chose her original answers. I explained that it wasn’t why she wanted to go to Emerson but why she had to but she still didn’t get it. It showed me just how difficult normal conversation must be for Beth.

Beth had a good session with Whiskas (not her real name) the occupational therapist. They did writing about things that Beth knows about herself. Whiskas did say that Beth seemed to move about more and make lots of noise. I asked her my opinion on the tourettes noises that seem to have sprung up. I told Whiskas that they seem to happen when Beth is excited and making noises anyway. Does that mean that the noises were tourettes based as well or just that she was adding noises to her excitement? Whiskas didn’t seem overly concerned and said that often when kids are more anxious the noises and the movement gets more intense. It’s like Beth’s way of self regulating and if she’s worried she needs more. I get this but will keep an eye on it.

As usual we ended up with McDonalds and a dvd for Beth. She’s watching it now. I deliberated over letting her have a dvd again. Then I figure that the other kids do lots of extra curricular activities that cost money and Beth doesn’t. Movies are what she loves so that can be her reward.

I experienced first hand yesterday my friend Bec’s boy Will having a meltdown. I’ve seen him in a mood and being horrible before but I’ve never seen him in the rage and torment that I saw him in yesterday. It was awful, not only for Bec but for poor Will himself.

Will is probably the only kid with autism that I know that I can’t pick. He’s a gorgeous boy, a good friend to my son Bill and a pleasure to have as a guest. He’s got lovely manners – better than my own kids – and, thanks to his upbringing, knows right from wrong. Most autistic kids I’ve met I can either tell that they’re autistic straight away or after a while have an ‘aah’ moment when I see it but with Will I couldn’t for a long time. He’s nothing like Beth and seems to be ‘in the moment’ which a lot of our kids aren’t. He’s very rule orientated, fair and very literal. Therein lies his problems. He takes things so literally that if Bec sways away a bit from what she said he has big issues. Also, if something happens to him in regards to bullying and nobody else sees it, his belief in being just is put to the test. Why should these kids get away with what they’ve done? Why doesn’t anybody else do something about it?

I read a book recently and one thing stood out more than anything. When these kids have an issue, whatever the problem, it’s important to acknowledge how they are feeling. We may not see things the way that they do. Often things happen the way they think, other times it’s what they perceive to have happened. Either way, they believe it has happened. It’s important to say “I’m sure that hurt your feelings” or ” that must have been horrible” as to them it is true. There is no point in trying to argue the point when a child is in meltdown as it will only make the situation worse.

Last night’s incident was a real one. Will was hit in the face with a basketball and he went right off. He was screaming and kicking and had to be carried to the car by a male adult. He was swearing and crying and I just looked at Bec and my heart broke for her. This is what she has to deal with nearly every day. I went to the car after a while and stroked his head while I talked to him. I was lucky he let me and I’ve no doubt that it may not work next time, he may tell me where to go! The awful thing was that he sounded so anguished, asking over and over again “Why, why?” and my heart broke a little bit again. That poor kid just didn’t understand why it was done to him. I don’t know if it was an accident or not, I just know that he didn’t believe it was and I felt awful for him.

It’s so sad that in this day and age of inclusion of special needs kids, mixed races and same sex couples raising children that we still get those who think it’s funny to be mean at other people’s expense. I’m not talking about this situation, I’m talking about all the years that I’ve experienced and seen with my friends kids too. I’ve recently written a social story for a friend whose son is constantly bullied by kids whenever he’s alone. It’s a sport to them, let’s tease this kid because he bites back. It’s no wonder kids like Will react the way they do to every little slight, it’s happened to them before and the lines blur between times it was real or times that they thought it was real. They reach a threshold and their ‘bucket’ is so full that it comes pouring out of them.

I guess our job as parents is to educate the other parents. Tell them how you feel, tell them what your kids are feeling. They didn’t grow up with kids like ours in school, they didn’t learn about differences and tolerance to those different to them. They don’t feel it like we do. Sadly many parents don’t see what the problem is or worse, they blame the child that has reacted, believing that that’s just what they’re like anyway, it’s not my kids fault. I’ve met many a parent who has made excuses for why their kids are the way they are. If they’re not going to be accountable for their childs actions then what hope have the kids got.

In saying that I’ve been very lucky with my years of schooling with Beth. We’ve had a few little incidences but the good thing about Beth is that she just doesn’t seem to realise that she’s being teased. It’s not good as in it means that she’s very naive of course but it’s good that kids don’t seem to tease her as much as they tease the kids who ark up. In other words she’s not fun to tease as she doesn’t react. Parents at our school have been pretty easy to talk to and most have told me that their kids enjoy Beth’s company. Or maybe they’re just telling me what I wanted to hear, who knows. I do feel that our experience has on the whole been a positive one. I know how lucky I am.

I hate waiting. I know it’s the way of the world but I want to know if we’ll be accepted at Emeron now dammit! I will however have to wait til 4th term. I’ve filled in the extensive forms and have an appointment with our principal at Primary School to see if she has the written results of the iq test, the vineland and the whipsy? I think it’s called. I’ve also written a covering letter. In it I have said thankyou for showing us around and have stated quite clearly that we loved it. I made mention of the fact that even though we live in the Heatherwood zone I was concerned with the long journey on the bus which has been confirmed as three hours a day. I also pointed out the proximity to Springvale Road which is 6 lanes across at that point. They don’t lock the gates at Heatherwood and they do at Emerson. I explained my fears at having a girl at high school and how I want her to be an equal among her peers and to have playdates and sleepovers like Bill and Bridie. I told them that I had done various things at our Primary School such as helping with the Trivia Night last year and how I was willing to do the same at Emerson. I even told them that I’m doing a web design course this year – which I am. I don’t think there’s anything else that can be done now, it’s in their hands.

I’ve noticed lately that Beth seems to be having Tourettes moments. She mutters really quick words under her breath that alway seem to be the same. I can’t quite make them out. She’s always been a noisy one, letting out grunts and noises when jumping around in excitement, now these little words are thrown in.  I guess we’re lucky she’s never been a swearer otherwise who knows what could be coming out of her mouth!

I took Beth along for a visit to Emerson today. As she has issues with talking about the future I thought it was best sooner rather that later to show her where she’ll hopefully be going so that she doesn’t get anxious about the unknown. Where originally I thought I’d let her check out the schools with me and make a decision, after seeing Emerson I decided that no, the decision was mine and Paul’s to make, not hers. With that in mind I told her this morning that we were going to visit her new high school for next year this afternoon. She seemed fine about it.

As it was quite short notice Paul couldn’t come along so I took the next best thing – his parents Bev and John. They seemed as keen on it as I am. Beth seemed to feel right at home as soon as we got there. We were a bit early as it only took us 25 minutes to get there. I’m a real worry wart about being on time so we were there ten minutes early. Beth spent that time reading the kids names on a whole school photo board. Rod was the man that we saw last time and he showed us around again. Beth was happy to meet him and have him lead the way. Everything Rod asked her she answered positively. For example he asked if she likes cooking and she exclaimed “I love cooking.” We also got an “I love art,” and “I love computers.” When we got to the “I love woodwork” I knew that she was bunging it on as she’s never done woodwork! She was like a kid who knows the right thing to say when getting a birthday present! She did seem to genuinely like the place and to my relief didn’t say anything about the kids with different coloured skin. We are from a predominantly anglo area so it’s good that Emerson is more multicultural.

When we finished we asked what our chances are for getting in. Rod told us that they get about 90 applicants each year and about 30 of them get in. Also, they don’t do the year 6/7 review until 4th term. I want to know now! I did ask if Beth being a girl would go in our favour. Rod said that they were wanting to have a more girl/boy ratio as at the moment it’s about two thirds boys. Of course she has to ‘fit’. Really as far as I’m concerned they have to accept her! I’ll put in an application form next week and one to Heatherwood also just in case. Fingers crossed!

It’s a gorgeous sunny day for the first day of winter. I’ve had a lovely day so far with my big girl. It’s amazing what relief does for you! There was no Speech Therapy today because Rod and his wife had a new baby last week. We decided to still go to see Whiskas (not her real name) because Beth really gets a lot out of their sessions and she wouldn’t have been happy trading her special day for a day at school. This meant that we had an hour to kill before our 11am appointment.

Beth needed new runners and she had saved up her pocket money and wanted to buy some dvds. Bridie had also saved up her pocket money and wanted me to buy her the Rapunzel doll from the Disney movie. We popped in to Stud Park with the thought that we’d do a spot of shopping followed by a cappuccino and hot chocolate.

Firstly to my amazement all the things I wanted to buy were in stock and easy to find. Beth picked Open Season 2 and Beauty and the Beast. She’s been watching clips of a lot of the earlier Disney movies so she’s now got a wider range that she wants to see. We got the Rapunzel doll easily too. Beth decided that for the first time she wanted to buy runners with shoelaces. They did have some with velcro surprisingly as she’s a size 9 in womens. (The same as me). But no, she wanted the ones with laces. Now I have to teach her how to do them! I know it’s something I should have done a long time ago but you know what it’s like, whatever is easiest with these kids sometimes. We then went to donut king where we ordered our hot drinks. Beth exclaimed that her donuts were fabulous (which they were) and I taught her how to rip the sugar packets without spilling them. I know, I know, small things and all that but I was chuffed that she did the second one herself. She plopped her marshmallows in and drank her hot choccy like a pro. We chatted a bit as she read the back of her dvds to me, telling me who was like who in other disney movies. I even managed to get in a bit about the new school when I explained that they do music lessons and singing. She told me that she wanted to learn the trumpet. Terrific. That’s what I get for encouraging my children! We then headed off to Sensational Kids.

Beth had a good session. It was reported that she used her imagination well as well as her usual sense of humour. They discussed where Beth would like to go and who she would take with her. She picked her girlfriends from school and wanted to go to Disneyland. When asked how she would get there she said on a flying carpet! She cracks me up! She said it would cost $24 to get there. Disneyland anyone?

We finished it off with a drive through at McDonalds. Beth’s watching Beauty and the Beast now. It’s been such a nice day. I didn’t realise how consumed I was in this whole high school thing. I know I have been stressed about it but I feel so happy today. On previous Sensational Kids days I’ve enjoyed spending my one on one time with Beth but it’s always been a bit bittersweet, thinking how innocent she was and how the hell was she going to cope with high school. Today though I felt positive about the future and so happy to have found such a haven for her.

I had a laugh yesterday. I was at Bec’s house and our friend Bree was there. I was saying that as parents we half live in ‘our’ world and half in the world of autism. How when I went to see Emerson it was like going onto an island of Beths. How I hoped that Beth would heave a sigh of relief at being somewhere where she belongs and is an equal with others. Bree said “It’s a bit like they’re talking to Telstra.” I asked what she meant and Bree explained that she had been on the phone to Telstra the week before for ages. She would explain something and they would come back with something totally unrelated. She’s be taken aback and try to explain her situation again only to get a similar answer. She said that must be what it’s like for kids with autism. Nobody understands what they mean and they don’t understand what others mean. A bit like being dumped in a foreign country. I had to laugh, what a good analogy!

Wow! I absolutely loved Emerson. Thank goodness! The gentleman who showed us around was just lovely which helped of course. He knew all of the kids by name and seemed to genuinely love his job. It wasn’t too far to get there either. Amanda came with me again as did Bec – Will’s mum. They both seemed impressed too.

Academically and extra curricular activities wise I guess it was on a par with Heatherwood. There were excellent cooking facilities, art rooms, automotive workshop and woodworking areas. We looked around the junior, middle (where Beth would be) and senior schools. The middle school are moving around the corner next year to new premises at an old primary school. This is off of Heatherton Road in a Court which was a plus. Even the main school though was away from the road. There were high fences everywhere. They were so conscientious of each individual’s difficulties. For example one child was a runner so they had him in a brightly coloured vest to highlight this. Every room had visual schedules. The playground had that stuff on the ground like in McDonalds playgrounds. When I asked about discipline they said that they like to use a positive approach. The class sizes are bigger than at Heatherwood, about 12 – 15 with one teacher and one aide. I explained that Beth may need extra work to start with as she has an aide nearly fulltime at the moment. This didn’t seem to faze them as they have classrooms that they can do more intensive work one on one if necessary.

Basically it comes down to gut instinct. While Heatherwood is an excellent school it is a very long way from our home. I didn’t get that ‘feel good’ feeling from there either though it may have been the shock at how different it was than mainstream school. I did get that feeling at Emerson however. The man we spoke to said he’d like to come out to our school to assess Beth in her current environment and to transition her over a few Tuesdays. Next step is to gather all our paperwork and assessments and organise Paul to come and check it out with myself and Beth. I feel so relieved!

I’m off to check out Emerson today. It’s similar to Heatherwood as in it’s a school for kids with a mild intellectual disability. It’s also closer than Heatherwood. I could drive Beth fairly easily there. It’s be just over an hour round trip. I like the idea of having some input into Beth’s schooling life, even if it’s just driving her there and seeing what’s going on. At Heatherwood I would never be there if she went on the bus as they don’t encourage parent participation. Still, I would be commiting myself to 2 hours a day of driving and no chance of a full day job. Hopefully if it’s Emerson we decide on there would be other kids in the area, then at least there’s a chance of car pooling.

I’ve been writing a few social stories lately. I wrote one for school about when you don’t win a game. I thought maybe I could put a page on here with a couple of examples, a list of the ones I could do and see if people are interested in buying them. Our principal said she is happy to write me a testimonial and recommend them to the schools. If I do it properly it could turn into a little job.

I’ll be back on this afternoon after I’ve been to Emerson. Then the choice will be made, Emerson of Heatherwood. I can’t tell you what a relief it is to know that it wont be mainstream. I’m still nervous about the whole thing but even Beth liked the look of the Heatherwood brochure. I’ve told her that she’ll be going to a school with others like her and she didn’t say she didn’t want to go there so that’s a start. Emerson’s a prep to 12 school too which means that Beth could start transitioning this year with the kids she’d be in with next year. I’ll let you know how we go x