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On a positive note

Posted by Sarah on Jun 30, 2011 in Uncategorized

I feel as though all I’ve been writing lately is doom and gloom. I wanted to apologize for that in a way, I know my regular readers will understand my frustrations and depression but I don’t want it all to be negative. I’d like to reiterate the positive things in our situation.

Firstly my daughter is basically just ace! She’s an amazing girl, she’s funny and she’s beautiful and she’s smart and I’m so proud of her. I wish people could know her like I do and I know that the people who do know her get great pleasure in her company as she can be entertaining and loving and lots of fun to be with.

I’d like to also mention the support that we get. I can’t say enough about my inlaws but as they read this I don’t want them to get a big head! Suffice to say that they’ve been there every step of the way and couldn’t have been more supportive if they tried. I love that we’re really an extended family unit and spend most weekends and occasional holidays together. In fact our whole family has been incredibly supportive of us and I know would drop anything if required to help out.

I’d also like to talk about our Primary School. I can’t think of a better place to have sent Beth in her junior schooling. I know I’ve said that if given the opportunity I would have transferred Beth to special school in grade 4 or 5 but really, if we were going to go anywhere mainstream it would have been right where we are. They’ve been amazing over the years and I think the school will be a bit quieter (in fact I know!) and a bit emptier without my Bethie Boo there. Despite the difficulties that Beth has been having recently they’ve gone above and beyond their duties and are trying their very best to make Beth’s last months there positive ones. The other kids in the class have on the whole been fantastic with her. Because our school caters to many kids with differences the so called normal children take a lot of things in their stride. It’s been such a positive experience having Beth there, not just for us but I believe for the rest of the students and staff.

The report that I mentioned (and I still choke up thinking about it) was a necessary one to get our funding. I was warned that they would make Beth out to sound horrific as that what was needed. I think the hardest thing I found was that even though they made Beth so bad they were also true. They were harsh truths and so awful to read on paper but that’s what had to be done. I know school found it difficult and most likely would have shielded me from them if they could,Sadly it was something I had to read. Thank goodness reports like this only have to be done at the beginning of primary and high school.

My kids in particular have been amazing too. Bridie is still a bit too young to understand but Bill is so protective of Beth. He’s patient with her and in turn this has made him more tolerant with other kids on the spectrum. He’s a sensitive boy so I’m hoping that he wont be like me and take Beth’s problems to heart. Both he and Bridie will play well with Beth and include her when asked in their games.

Lastly I’d like to mention my wonderful friends. I think we’ve been very lucky on this count as I’ve heard stories about people losing friends over their child having autism. We haven’t had that happen at all, or if we had they mustn’t have been that good a friend in the first place. The great thing is that I have made some wonderful friends due to Beth’s autism too. It’s amazing how quickly you bond when you have similar issues with your kids. Of course not all of my friends are to do with autism, just as it’s not all Beth is it’s not all I am either. I think that the older you get the more choosy you become with your friends and I truly believe my friends have got me though the tough times. With the friend who do have kids on the spectrum  we’ll often end up in tears of laughter due to something or other that our kids have done. How politically incorrect! I believe though that if you don’t laugh you’ll cry and I thank God for those who remind me of this every day.

So on that note I’ll go. I’ve had gastro the last few days so I’m feeling like crap. I wonder how much of it is emotional also? I just want this year over but we’ve just got to wait it out and see where time takes us. Hard as it is I know that Beth will be in a good place next year. Definately a special school setting, just not sure of which one yet. She’ll be safe and hopefully happy and I can relax for another 6 years! Thanks for reading! xx

 
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Been to the psych

Posted by Sarah on Jun 29, 2011 in Uncategorized

Beth saw the psychologist at Sensational Kids today. Paul ended up taking her as I had been up all night with a bit of a tummy bug. Rod had laringytis so wasn’t there either so Beth just saw Rebecca. Showing how comfortable she is there Paul said Rebecca introduced herself and Beth said “Hi Becky!”

Paul said it was fairly inconclusive as we don’t necessarily think that Beth knows the reason why she’s not happy at school at the moment. One suggestion made which was a good one is that the aide notes when incidents happen, also when things are going well in the classroom. Maybe if we have a record with times we may see a pattern or a certain time of day when they happen. She did suggest that Beth wear a hoodie as she was wearing one during their session. She pointed out that Beth could put this over her head and muffle out noise but her grade 6 jacket has a hood and she already does this.

I got a copy of the reports for our 6/7 review today. I knew they would be awful which is what was needed but still, they left me in tears. Things I wasn’t aware of such as her pulling up her top/pulling down her pants in the toilets and looking at her body in the mirror in front of other kids. It also broke my heart to read of her increasing solitude due to her losing her connection with her friends and her capacity to socialise. It states that her autistic behaviours have increased quite a bit since starting her period. It says that she lives very much in her own world and is socially disconnected from those around her. It says she is displahing signs on anxiety, confusion and aggression as she struggles to understand demands made on her and negotiate her way through each day. Basically it goes on and on in that vain. I knew that the report would be awful, we’ve been through it before and I was of course warned. During our meeting I had a brief look at these but sitting down reading all of the reports makes me feel sick in the guts. If I was reading this about another child I would feel such sorrow for them, it’s devastating to read it about your own child. It’s such shit that we as parents have to go through all of this just to get our kids a safe and happy education.

 
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Psychologist tomorrow

Posted by Sarah on Jun 28, 2011 in Uncategorized

I emailed Rod from Sensational Kids yesterday asking if he could possibly try to get out of Beth the reason why she has so many anxieties this year. He told me that it may be a bit out of his range so suggested that we see a psychologist next time we are there. I decided to forgo our appointment with Whiskas (not her real name) – the Occupational Therapist as I think we really need to try to get to the core of the problem and made an appointment for straight after our speech session with Rod. I just want my little girl to be happy, especially in her last year of primary school. It needs to be a positive experience, not one that she looks back on with fear and worry.

Bethie seemed to have a good day today. It’s the school holidays coming up next week so she should be happy to get a bit of a break. I haven’t heard back from Emerson yet in regards to dual schooling. All I really would like is for us to start doing the transition days in term 3 instead of waiting for term 4 but I can’t see them budging. I get why they wait until term 4 with not knowing how much funding they get but it still doesn’t make the situation any easier. I’ll wait to speak with them and ask their advice. I’ll let you know how we go tomorrow.

 
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A brief meeting

Posted by Sarah on Jun 27, 2011 in Uncategorized

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?

 
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Feeling a bit lost

Posted by Sarah on Jun 25, 2011 in Uncategorized

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.

 
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Feeling a bit stressed

Posted by Sarah on Jun 24, 2011 in Uncategorized

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!

 
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Sensational Kids June 15th

Posted by Sarah on Jun 15, 2011 in Uncategorized

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.

 
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Teasing

Posted by Sarah on Jun 11, 2011 in Uncategorized

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.

 
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A waiting game

Posted by Sarah on Jun 7, 2011 in Uncategorized

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!

 
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Beth and Emerson

Posted by Sarah on Jun 3, 2011 in Uncategorized

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!

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