Posted by Sarah on May 16, 2012 in Uncategorized

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!


A hectic week

Posted by Sarah on May 12, 2012 in Uncategorized

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!


Mothers Day

Posted by Sarah on May 8, 2012 in Uncategorized

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



Posted by Sarah on May 4, 2012 in Uncategorized

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!


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