Confused and Annoyed

I know this is another really negative-seeming post, but it's all a perfect example of the emotional roller coaster my life is in regards to my son. I'm confused. I'm annoyed. I am hearing alot of jabber about the gluten-free casein-free diet (GFCF) and Biomed treatments for autism. There is so much information out there - some of it conflicting - and I don't even know all the information regarding these things, but to me, the whole thing smells very much like a 'fad'.

I know alot of people got offended right there.

I mean no offense. I'm not saying it is a fad. I'm just saying it seems like one, because some of the mums I speak to go on and on and on about it, and I can hardly google anything to do with autism without coming across it.

A little note on my personality: I can't stand anything that is a fad. In general, if the population is running towards something like crazy, I run in the opposite direction. I don't know why. It's just me. It is not often that I jump on the bandwagon with everyone else. Sometimes I do though - like with cupcakes. Hated the fad at first (seriously people, get over it! They're just cupcakes!) now I find myself baking them all the time. Go figure hehe.

I want to make something very clear here: I don't judge these people. I might hold a very different opinion, I might even feel very contrary towards the thing people go nuts over, but I do not judge them. Each to their own, and whatever works for you. And I am certainly not going to judge someone who has seen improvement in their child as a result of employing such treatments!

This is lunch on most days: A cream cheese sandwich, cup of water, and piece of fruit or yoghurt. The only thing he will have on a sandwich is cream cheese, Nutella or honey. And he always bites the top corner, and opens the sandwich and arranges them on his tray before he eats the rest :)

What does annoy me though, is when people look at me funny and with that sort of condescending way when I say that I'm not convinced. I hate that. I feel like they are judging on me for not agreeing with their views. Very upsetting. The evidence I have seen is just not compelling for me. I find it annoying when people condemn me for choosing to treat or not treat my son a particular way. I had one lady recently, who made me feel so evil for giving my son cows milk on his cereal every day. She said it was poisonous to these (ASD) children. I did not appreciate that. I have seen no evidence whatsoever in my son of any allergic reaction to dairy or gluten. No reason whatsoever to consider removing these things from his diet. In fact, to do so, would leave me with very few options for his diet! He's already very fussy! And think of the logistics and cost of it: to completely change his diet, while trying to manage the rest of my family, when there is NO evidence of a problem in the first place...... please. I have enough going on without that sort of pressure.

Having said all that, there is enough anecdotal stories out there for me to sit up and take notice. I'm not going to write something like this off just because it bugs me. The GFCF diet is something I plan to try at a later date. Just in case. The evidence is not compelling for me, it's true. My son shows no signs of allergy or intolerance to these types of foods, it's true. But I've heard enough stories to wonder if it might make a difference anyway. Right now, I can't do it. I just can't. But it's on the cards, and I'll blog about it when I get it going. Will let you know how it goes.


Would love to hear from people who have tried the GFCF diet, and their experience with it. Did it work? Did it not work? etc. Just looking for personal experiences here, no debating please. Thank you :)


xx

Worried. Stressed. Grumpy.

I am grumpy tonight. It's not because I'm tired (I'm always tired, ok? That's like a prerequisite to being a mother)....it's not because I'm tired, although that probably is making it worse. It's because I'm worried. I have noticed in recent months, that when I am concerned about something, I become grumpy. Tonight, that is also exacerbated by an incident at school involving the girls' lunch orders from the canteen. Something I'm very peeved about, and intend to write a letter of complaint to the school. But I won't go into it here, suffice to say, this is not the first time.

I digress again.

My worry is in relation to my son. He grinds his teeth. This is a relatively new thing for him. He has been grinding his teeth, for maybe..... 6 weeks? The first week or two, it was nearly all day. Drove me absolutely crazy. Then it started to taper off, and now he only does it when he is bored, I think. I don't believe it is a sensory issue for him. I think it is just a habit. One of my older daughters used to do this too, and all of them grind their teeth in their sleep occasionally anyway.

So no, I don't believe it is a sensory craving, and even as a baby , my son never did put things into his mouth. I thought this was unusual at the time, but never really thought hard about it. Instead, I looked at the 'positive' side, and thought that I was lucky, as the choking and germ hazard was greatly reduced because of this. Well, it turns out that he was just not developing as a normal kid should. So much for being positive.

I am worried though, because I heard someone mention that their child also did this (he also has autism), and had to have 4 teeth removed (*gasp* what??). They did, however, point out that their child had a 'thing' for juice, and that they had left the teeth-grinding habit unchecked. And they were reluctant to mention the incident in the first place so as not to scare me. At this point, I want to say very clearly, that these are good people who take very good care of all their children. They are a family that I look up to and admire and hold in the greatest of esteem. Their experience and advice regarding my son is something I value highly, so the mistake they made with their child would have been exactly that, just a mistake.

Anyway, normally I am not easily scared. But I think that without realising, this has become a concern to me. He might not do it so much anymore, but when he does grind his teeth, he really goes for it! So I have been worried all day about it. And it has stressed me out, and so I am grumpy now. I do try to interrupt the grinding, as much as I am able to. I do this by either squeezing his jaw, or giving him a snack. Usually fruit or a cheese stick. The snack works better than squeezing his jaw. Today, I have doubled my efforts to rid him of this behaviour. It hasn't worked much that I can see. I have even taken to putting my fingers in his mouth to rub his gums and teeth. He only lets me do this because I've been trying to desensitise him this way, in order to prepare him for accepting a tooth brush into his mouth.

I wish he would stop. But it has become alot more apparent that this isn't going to stop by itself. I don't know why this wasn't clear to me in the first place. It's as if it just didn't compute, even though I knew. Fatigue I guess. I don't know. I do know that my brain isn't as sharp as it could be these days haha. Too much going on, and not enough sleep. Anyway, it isn't going to go away by itself. I need to work at this.

Like everything else about his autism... I need to work on it all. None of it is going to 'go away' or decrease in intensity by itself. It makes me think, we have a long road ahead of us. And thinking about that makes me tired. And more stressed. And more grumpy.

I know everything will be alright, but I wish I could just get a glimpse of the future to see it. Just so I can be reminded that all this hard work will definately pay off. But the future for my boy is still cloudy for me. I guess I have to be used to that.

Worried. Stressed. Grumpy.

But still smiling. God's got us.



xx

The Marble Run

This is my son with one of his favourite toys....the marble run. Just in case you haven't seen one before, you basically just pop a marble into one of the top receivers, and it runs it's course down to the bottom. He just loves this toy. Personally, I'd get bored with it in about 5 minutes, and I'd expect most other children to have limited attention to this one too. But he just loves it. It's perfect for him. Repetative and predictable, with enough variation on the different paths down to make it interesting.


I used to feel really bad about leaving my boy to play alone. Especially when he is just staring out the window. I still feel guilty at times, but realistically, there is only a certain amount of time I can spend with him. I have a family to care for, which means dishes, washing, cooking, cleaning.... (the cleaning usually gets left lowest on the priority list unfortunately - I hate this, but I can only do what I can).

The reason I feel bad leaving him, is because I hate the idea that he retreats into his own little world, alone. I thought there was nothing going in his little mind. I am beginning to change my opinion of this.

I have been reading a book where two autistic people talk about how they see the world, and the what sort of thought processes went on inside their heads as they were growing up. I am loving it... it is so enlightening for me, and I've already learned so much from it. Since reading this, I realise that there is in fact a LOT going on inside my sons head. I - we - might not see it, but there is alot of stuff going on in there all the time. Sometimes, it is too much for him, hence why he might fixate on something else for a while. This brings him some measure of comfort and control in his life. And lets be honest, we all need that.

The ability to play alone and entertain oneself is in itself a skill. Part of my son's problem is that he lacks imagination, so when I find him investigating something - even just a repetative type of toy, it is good. This doesn't mean I should leave him to stim or stare all day. But it does mean that if I need to get things done, it's not necessarily going to be detrimental to allow him to do his own thing. Chances are, he's working out the world around him in his own way - in a way that makes sense to him. While too much of this can lead to a warped view of the world he actually does live in, a little is okay.

So if he's enjoying watching that marble run the same way over and over and over again, it's alright.... he's happy, he's busy, and I'm able to get some other things done in the meantime. When he has had enough of it, he usually comes looking for me anyway.



xx

Lemon Meringue and 21

My first attempt at lemon meringue cupcakes. Now, this is just my own opinion, but they turned out absolutely scrumptious! And I don't even like lemon meringue! I'm sending some in with hubby to work tomorrow too, so we'll see what they all think of them out there.




I was asked to do 21 cupcakes for a cousin of mine who turned...yep...21. I didn't have much time on this particular day, but I managed to make these. Vanilla cupcakes with chocolate buttercream. The fondant stars are handmade as well. I wasn't too happy with the cake though. I had put in a bit too much buttermilk, so they had a caramel sort of colour and a bit too much tang for a vanilla cake. But despite that they turned out fluffy and flavoursome anyway. As for the fondant stars.....hah. Lets just say my piping skills need a LOT of work haha!



xx

Line up!

It's a fairly typical autistic thing to do. Line things up. (Although not all ASD kids do this). When I tell people that my son has autism, it's often one of the first things they ask....'oh, does he like, line stuff up all the time?'. Well... he doesn't do it all the time. And he doesn't do it with everything. And in fact, he's only just started doing this recently. But here's a cute shot of what he did with his mandarin segments tonight at dinner. Please excuse the messy high chair tray.... he is still feeding himself (yippee!!!) and therefore he makes a mess of himself and his tray :)





I peel the mandarin for him, and segment the pieces, and check each one for pips before plonking them on the tray in front of him. He took each piece, and instead of eating them straight away as he usually does, he lined them all up in a row first. Then he ate them. Too cute <3.

Sometimes, I need to work at breaking some rigid patterns. Other times, they are as innocent as this. And I just think; 'Honey, if it makes you feel better, you just go ahead and line up your stuff'. I figure, better that than screeching all day or banging his head or something. It could be much worse.



xx

Chocolate

Chocolate cupcake with chocolate buttercream (my all time favourite type of buttercream), and drizzled with white and dark chocolate. They didn't turn out how I intended actually. But that was because I couldn't be bothered with details this particular night hehe. What I really wanted to do was pipe pretty spirally-type patterns on top over the buttercream. But I really couldn't be bothered with piping bags and filling and waiting for the chocolate to settle to the right piping consistency, and so on and so forth. So I just drizzled it on with a teaspoon.



xx

Exploring

I love it when my son takes an interest in his environment. This is supposed to be what regular kids do. They check out their world. I remember back in uni, doing a unit on attachment in children - what was healthy and what was indicative of anxiety or other issues. A baby/toddler with healthy attachment is one that takes a small amount of time to warm to their environment, and then begins to explore their surroundings by venturing away from their caregiver (usually mother) and returning to her at various intervals. Like the caregiver is 'home base'. I can't cite sources off the top of my head though, and frankly, I can't be bothered looking for them. But that much I do recall from back in my uni days.

So when my boy explores his environment, and makes a discovery, I share his excitement in every way. It's wonderful! For so many reasons :).

Recently, we were out having dinner at my sister's house. It's not as though we never go there however, my sister's place should be a familiar place for my son. But he has never ventured beyond the bottom level. This time though, he decided to check out what was upstairs.



It seems he discovered how to get up the stairs by himself, and when he got there, he found the walkway to the upstairs lounge room. He was delighted by this discovery! He spent most of the evening running the same circuit from my sister's room, past his cousins' rooms, and along the balcony/walkway to the lounge room, and back again. You could hear his happy noises as he did his thing up there. It was very cute.


The problem was trying to get him to come back down to eat his dinner hehehe. We managed :)





xx