Monday, May 30, 2011

A Smirk From An Office Lady

I don't really know why I am posting this. Lets see..... I can say my intention is not to 'slime' people with my problems. It is not to try and elicit sympathy for my 'terrible lot in life' either. Truth be told, I am happy. I am at peace with it all. I have a wonderful husband and beautiful children. Hubby has a job and we have a place to live. We have food, family, friends.

All that doesn't necessarily mean I float along with a smile on my face and song in my heart all the time. I am having a bad day. Maybe a bad week. Toilet training especially has my stress levels jacked right up there. I guess I am posting because it is a way of processing for me, and a way of spreading awareness of what comes with this territory.

Sometimes, the isolation and judgement from others really is too much. This morning I went to drop my girls off to school, late. Hubby stayed home with the small ones, so I was able to actually go into the office with them to get a late pass. The lady at the office, in a very hushy voice, asked me how I was. I smiled and lied 'Not too bad thanks, and you?'. She didn't answer. She didn't smile back. She just looked at my girls and said our surname as she searched on her computer. I was a little surprised that she knew their name without having to ask. It is a big school. I said:

"Oh! You know our name. Is it because they come here alot or because you just know all the names?" I smiled. She looked up at me from the corner of her eyes and said very smugly:

"Oh I see them alot. Not for being sick. I see them alot for late passes". She smirked and tossed the late passes at us over the counter. I could just see the judgement oozing off her. I stood there and said nothing. I was so ashamed. Thinking about it now just makes me want to cry.

My girls do go late to school sometimes, but it's not that often. And it's not that late. A late day for us usually means I have dropped them outside the school at 2 minutes to 9. So they can't possibly be so late every time. Yes I know it is not a good habit anyway, but truth be told, this is a recent development. Before I had the baby miss, when my little man was much smaller, late mornings were almost unheard of with us. He was easy to sort out, pack up and put in the car. Not anymore though. And it's not always directly because of him. Sometimes it's me. Having a child with special needs is very taxing - mentally, emotionally and physically. And some days, the thought of having to drag myself out of bed to manage four other people, including one on the spectrum, before I can attend to myself is just too daunting. There is no one to help me, and I must do it alone. I guess, according to the office lady anyway, I'm just not good enough.


Wednesday, May 18, 2011

Retrospect: Part 2 - The Paedie Visit

Grab a cuppa and get comfortable. This is a long read..... :)

From the day I visited the nurse in May, to the day we finally saw the Paedie in July, life truly was a roller coaster. One moment I was fine, handling things and feeling positive about whatever the future held. The next minute, I'd be in my room weeping and grieving over my son. I just found it so hard to put into words what I was feeling. I felt guilty over being upset. And I was still just shocked that this was happening to us - to my son... in my family. I mean, hadn't we had enough already? One little niece with multiple disabilities, already passed away and her baby brother born with the same terminal prognosis, and another little nephew with Down Syndrome? Now my son too? What is going on here? Has God cursed us? Have we done something terrible to deserve all this?

Look at those two darling faces :)

I know now that this is no curse, but a precious blessing - that we have been sent these amazing children because we have this capacity to support, love and cherish all of them throughout their exceptional lives.

Very tentatively, I began to share a little of my heart with my husband. I had not heard much from him, though I was certain that he was not completely without emotion. He just handles things differently. But I was keen that we take this on together, supporting each other. I really needed his support and was worried that he needed mine but hadn't said anything. As it turned out, he was upset over it, but refused to emotionally commit to anything about it until there was a firm diagnosis. In other words, he would not allow himself to think about it too much at this stage, because to him, there was no point - we knew nothing for sure.

This was SO different to how I was handling it. I had to think about it. All the time. I could not help myself. I needed to be saturated with the whole deal so I could process things. Although it seemed to me that my husband just didn't really care one way or another, in my heart, I knew better. He cared, he just had a different way of working it through. That was ok with me. But I felt that my ability to share with him was limited because of it. He obviously did not want to be talking about it all the time, whereas I needed to. So we talked a little. Mostly at night as we went to bed, or in the car to various appointments for our son.

I would mostly tell him how I felt about things, and ask if he had considered whatever it was I was talking about. I told him where I needed his support. He tried his best, and I appreciated that. But to be honest, it just wasn't enough. Nevertheless, I didn't want to just dump all my emotional mess on him where he was trying to keep his emotions all dormant for the time being. It wasn't fair.

I tried to seek comfort in family and some friends. I had no shame in discussing it. This was my son, and I loved him. And this is just the way things were. People were very sympathetic, but so many times I got responses that just made me shake my head in confusion and disbelief. Some of the common ones:

I really think it's just his hearing.... he has hearing problems. Get his hearing sorted and you'll be fine.
Ahh, we already had his hearing checked - it is the first thing they do.

No, he's fine Viv, just a bit slow that's all. He'll catch up, don't worry.
I hope that is the case, but I really doubt it. There is something more at play here. And wouldn't you worry if it was your son?

Stop worrying, he is fine.
Don't tell me to stop worrying. How can you even expect me to NOT worry? The next person to tell me to stop worrying is going to get a slap!

Oh, I knew a kid who didn't talk till they were 3/4/whatever, and they are fine now.
That's nice for them, but there is more going on here than just a lack of speech.

You know you have to stop immunising him now, don't you?
Er.... why don't you just take this knife right here, and stab me instead? It would be less painful.

You've just spoiled him. You've become a typical Arabic mum who adores her son and will let him get away with murder.
People! Please! Wait patiently for your turn with the knife! There is plenty of me for everyone to shred to pieces.

Ahh, yes. It was not an easy time. By any means. And sometimes the most hurtful comments come from the most unexpected people.

I was so quick to snap this picture up, because he never used to look at books! This was so rare, and in fact, I never really saw him do this again. All he was doing though, was staring at the one page he had open.

The day finally came for the long awaited paedie visit. In the waiting room, our little man was not interested in the box of toys provided for waiting children to play with. Instead, he kept running to the automatic doors to try and escape. We were finally called in by the Paedie.

On the way into her office, she bent down to address our boy - and very loudly I might add.

"Hello Erik. Hello Erik."

He totally ignores her, more interested in looking around and trying to run away.

"Erik, hello. Can you shut the door please Erik? Erik, shut the door."

Still no response.

I am not embarrassed this time. This time, I am grumpy with the paedie. Isn't it obvious that he isn't going to respond? Stop pestering him, the whole waiting room is staring at us! He isn't going to respond. Leave him be!

We went inside the office and the paedie brought out a box of toys for our boy to play with. He didn't even look twice at it. It was like he didn't notice it. We seated ourselves and began introductions. She started by asking us what concerns we had that led us to see her. The whole time, our son just walked around the room in the same pattern. Occasionally he would walk around our chairs. He would also make this strange sort of honking 'aaahhhh' sound. Over and over. The paedie asked me what that meant. I told her it was a sound he makes when he is happy. He certainly seemed happy enough to be in there, though I had my doubts about the genuineness of it. Looking back now, I think it was more a sound of anxiety than happiness. He was nervous, and that was how he expressed it.

She went on to ask a myriad of questions, fill out a questionnaire, and even conducted some simple tests to observe what our boy would do in certain situations - like showing him certain toys, or blocking a part of the pattern he was walking. After what seemed like forever, she finally shared her thoughts with us.

There was definitely something wrong. She couldn't say specifically what, but she suspected either Autism or Developmental Delays, but she was more inclined towards Autism as a diagnosis - he's definitely on the spectrum somewhere. We had to go for more specific testing to confirm though.

My heart sank and my chest felt tight. I felt sick to my stomach. Hot tears stung my eyes and started rolling down my cheeks. I had known this was a very real possibility. But to hear from a nurse is one thing. To hear from a Paediatrician, is another. I had a feeling inside, that I could only describe as something clicking shut. There is no way out now. No chance it might be something less serious. The last little bit of hope I had was now gone.

She asked me if I was alright. Tears streaming down my face, I laughed and said no. I'm not. I'm not alright. But I will be. I couldn't really say how my husband reacted or what he felt. He keeps his emotions well under control, and I was just swept away with mine.

I have to say, the rest of the afternoon was a blur. I don't remember leaving, or getting in the car, or arriving home. I don't actually remember anything in the short period that followed, so I'm guessing that based on what I know about myself, I fell into a deep depression. I probably carried on as normal - what else could I do? But because I don't remember, I think I must have just been walking around like a brainless zombie. Not all there. Lights on but no one home. In a surreal kind of numbness, where the pain is just there, but I won't touch it for fear it will cripple me completely. I couldn't afford that. I had a family to care for, and another child in my womb to consider. I had to keep it together in so many ways. That was hard. Really, really hard. I wished that someone would just give me permission to fall apart and carry my load while I went to pieces for a while. But nobody did.

One of his favourite things to do was post the tokens into the slots in Connect Four. It still is, and I have to hide the game to save meltdowns. It only comes out at very special times for him now.

The next step was to get some blood tests done and wait to hear when our diagnosis appointment would be. That took months to happen. In the meantime, we set to organising early intervention and speech therapy for our boy, as we were told we didn't need a diagnosis to get started. We were lucky enough to get plugged in to services in a relatively short time. It was good because it allowed us to focus on helping our boy rather than the frustration we felt at having to wait for a formal assessment. Because regardless of what the final diagnosis was, his needs had become obvious, and would remain the same.

At this point, I feel that my journey had begun the slow transition from shock and grief to sadness and acceptance. I still grieved, but having a more solid picture of the situation allowed me to move on from the dizzying confusion of limbo land. My son was somewhere 'on the spectrum'. I had new bearings now, so it was time to strike out on a different path. One that has, so far, turned out to be more colourful than I imagined.


Monday, May 16, 2011

Teapot Cake At A Kitchen Tea

Well I was going to limit this post to just the cake, but I decided to include some other things too, because the whole event was actually quite lovely. It was the kitchen tea for my SIL hosted by the other two bridesmaids and myself. We themed it on a High Tea style... which, actually, I found later was not what I thought it was. What I was thinking of was Afternoon Tea, otherwise known as Low Tea. High Tea was what the lower class folk had, and equates more or less to what dinner would be today. It was called High Tea because it was taken at a high table. Low Tea or Afternoon Tea was called such because it was tea and refreshments taken at a low table, sometime in the mid afternoon. So, yeah... fail on that count LOL. But everyone else knew what I meant! So in the end it didn't matter.

And it was so nice! Have you ever had tea out of proper tea cups? And saucers? If you haven't, you should seriously try it. I know we are all used to mugs these days and tea cups are a bit smaller than mugs..... Ok, they are alot smaller. ...Tiny... really. - But that's not the point! There is just something about sipping tea from a dainty tea cup balanced just so on its lovely matching saucer. You drink, and then refill, and drink some more. And for that reason, your tea is always hot! Can't have a tea party without tea, but besides the tea, we also had wine, punch and a gorgeous range of dainty eats: Ribbon sandwiches, mini quiches, pickle, cheese and cabana sticks made up the savouries. And for sweets, mini lemon meringues, mini vanilla cupcakes, butterfly cakes and of course, scones with jam and cream. And the big cake. The Teapot cake! Everything was delicious, and I still can't thank the other bridesmaids enough for all the amazing work they put in with cooking, cleaning and setting things up. You rock girls!

The inside is chocolate cake with caramel buttercream. The buttercream tasted lovely when I checked it, but I was so disappointed to find that you couldn't taste the caramel in it once you ate it with the cake. Oh well. I know for next time now.

The cake is covered in ivory fondant, with rose detailing embossed on the sides and lid, and hand painted in with edible colours. The gold gilding around the edges was also edible. The sugar bowl and creamer are cupcakes decorated with the same. The sugar bowl had real sugar sprinkled on top, while the creamer was topped with white chocolate ganache. Tasted awesome, but I thought it looked like the milk in the creamer had turned because it was more yellow than white!! LOL. Fortunately, this didn't put anyone off :) The only thing was, they all thought the cake was too pretty to cut and eat!

I had iced the board and embossed it too, to try and make it look like a small table cloth. The one thing I forgot to do was put a ribbon around the edge of the board... was kicking myself for losing that detail. It really does make a difference!

I had made the mini cupcakes as well. Vanilla with vanilla buttercream and handmade sugar flowers. I just thought they turned out gorgeous with their pretty pastel colours. I really loved these ones, but again, people thought they were too pretty to eat!

There were a couple of games, and my SIL was showered with gifts for the kitchen. Bottom line: she felt very spoiled, which was the whole point really :).

One of the games was the toilet paper bridal gown. If you don't know this one, the name kind of speaks for itself. You break up into small groups, choose a bride, and make her a gown out of toilet paper. My daughters were in a group together with another one of our guests, and I couldn't stop smiling at the scene they made! Big Miss was standing, so proud and dignified modeling her designer gown, and Miss Jane was so busy working away to dress her big sister up with the help of the other lady in their group. It was just beautiful! A little glimpse of the future methinks. I almost had tears in my eyes.

Such a perfect reflection of their personalities. Amazing.

Miss Jane explains to us the details of their couture creation.

Big Miss was so pleased with her designer gown!

Of course, Miss Jane was not going to be left on the shelf, so she got the lovely Katherine to make her a bridal gown too. Cute :)

Miss Jane gets her own designer gown.

Personalised sugar cookies went out as party favours. I've only made these a couple of times before, but this was the first time I had iced them properly. All the flowers were handmade, and I tried to stick to the subdued and powdery colour palette to match the party theme. I loved the way these turned out - so pretty! Most people thought these were too pretty to eat too, but I couldn't wait to have one... and they didn't disappoint - delicious! But then, they couldn't really fail when they are Peggy Porschen's recipe /wink. I wanted to provide the recipe for you here, but it's copyrighted and I don't have written permission from Peggy, so I don't feel comfortable doing it :P. Other people have though, and one place you can find the recipe is on Carly's Kitchen blog - it's the same one I used. Not a difficult recipe by any means, so don't be afraid to try it! They are seriously yummy, with or without icing. Buttery and tender but not cakey, and firm enough to hold their shape and icing.

Sugar cookies; recipe from Pretty Party Cakes

We all had a lovely time. It was the first time I have made a teapot cake, and it didn't quite turn out the way I envisioned it. But in the end, despite all the flaws I could see, I was really pleased with the result, and learned some new techniques along the way.


Monday, May 9, 2011


Someone please tell me why I haven't organised this yet?


Friday, May 6, 2011

Another Success?

Remember the post where I talked about how my little man wee'd in the toilet, with his jocks on? And how he seemed to be standing up rather than sitting on the seat when he did? Well he has done it again, only this time, he pooped!

That's right! I have kept on with the leaving-him-in-there-alone tactic, and this time when the music stopped, I also noticed a really strong, feral, poopy smell. When I peeked around the corner to check on him, there he was just passing the time, standing up in front of the toilet. There was alot of poo in the loo and some on the seat, and a scraping of it on his legs. But NONE in his jocks or on the floor! Awesome!!

It's hard to work out what happened because I wasn't in there, but I suspect he was sitting or crouching at first, and then stood up towards the end, which is how he got some on the seat.

I cleaned him up and made a really big deal out of it. He was clapping and laughing too, and waited with some apprehension for me to flush it all away.

I am so pleased! I just think, that even if he doesn't really know what was going on, it is a step closer :). I also think I might just continue with the privacy tactic.... maybe he really does just need his own space? I'll just have to be vigilant to when he is finished and needs to wipe.

Here's hoping this success continues!!

At it for 7 weeks, and we have finally caught a poop on the toilet :)

Wednesday, May 4, 2011

He Puts The Happy In "Happy Meal"

Yesterday was a crazy day for me. Started with the usual chaotic morning run of dropping big girls off to school, scoot around to drop the little man at kinder and then off to do the groceries with the baby in tow. Just before I was to turn into the shopping centre, I looked in the back of the car to smile at my little one, and found my little man still seated happily and quietly in his seat! .... forgot to take him to kinder. So back I went to drop him off.

Spent about 1.5 hours doing the shopping with the little one whinging halfway through. Went through the checkout and checked my phone for the time, which is when I found a missed call from my man. Called him back, phone went funky and couldn't hear anything. About to try again when he sms'd instead. 'In case you're doing the shopping today can you get anti-perspirant'. Right. Drag the heavy trolley back into the supermarket, pick up the anti-perspirant, pay and make my way out again.

Back home, quickly check emails and send a few messages. Then simultaneously unpack the shopping and feed the baby lunch. After lunch, baby goes to bed. Make a coffee and sit down to do my cake school homework. A couple of hours later, it is time to collect the children. Fortunately, I have finished my homework - just. Load a half asleep baby into the car and set out again. Pick up the big girls, then drop all girls off at grandma's for an hour or so, and make my way over to meet my SIL and future BIL at their appointment for the wedding cake. Didn't want to miss that one :D. Cake appointment goes for 1 hour, and they choose a gorgeous design, put down a deposit and off we go again. Pick up the girls from grandma's, grab some Macca's for dinner since I won't have time to cook, then pick up the boy from kinder.

Once we are all seated and ready in the car, I place a McDonald's Happy Meal box into his lap. He looks at this with surprise and delight, and starts making his 'happy' sounds. "Fffff shhh.... ooooossss oooooosss..... ooooofffff sssssss" etc.

Hehe... cute :)

We get home and he is very keen to get out of the car. There is alot to unload though: 2 girls, 2 schoolbags, 1 baby, her blankie, baby bag, boy, kinder bag, 3 boxes and 1 bag of maccas food, 4 drinks, and myself. I take the baby in first, and put her down behind the safety gate while I go back for the boy and other stuff. The big girls take care of themselves and their schoolbags. I try to enlist the help of my little man by giving him his own meal box to carry, but he wouldn't touch it! ... Strange. I thought. I know he loves Macca's. Oh well, I'll just have to manage. He starts running up the garden path excitedly, but keeps looking back to see if I'm coming. Very good!

Get into the house and try to unload everything. He has run to his place at the table, but since there is no food there yet, he comes back to see where I am. Finally I put his food on the table and set him up to eat before the others. He is so excited, it's not funny! I set up the others, and try to grab a bite for myself to eat before cake school. I had no lunch and will not have time for dinner before I go tonight.

My son, however, is happily tucking into his dinner. Every few minutes, he gets up and returns to the edge of the lounge room, and re-patterns coming in and finding his Macca's at the table. Hubby told me he continued to do this after I had left for cake school too. Hey, all kids love McDonald's - right? I mean, I have yet to meet one who doesn't, though rationale tells me they must exist somewhere. But honestly, I don't think I have ever seen a kid so happy to have McDonald's! I mean, my girls were pleased to be having it for dinner, and every other kid I know would be pleased too. But my little man...? Well, he just puts the 'happy' in 'Happy Meal'. He was unbelievably delighted. Cute!

Off to cake school where I learned how to make Arum lilies and leaves, rose leaves and rose buds. Back home by 9:30pm to (finally) eat dinner, and finish what I did not get done in class. Prepare lunches for the next day and iron a shirt for my man. Finally, bed at 12:30am. Exhausted.

The highlight of my day...? My little man's very happy Happy Meal.


Monday, May 2, 2011


Well I'm not quite sure what to make of it actually. Yesterday, I took the boy into the toilet for 'toilet time', and went through the whole rigmarole of getting him to stay seated, etc. He totally did my head in with the stand up-sit down-stand up-sit down thing. I tried for around 15 - 20 minutes, determined to catch something this time, because I knew he needed to go. By the end of it, I was so frazzled. He just wouldn't let go. I pulled up his pants and told him we were all finished and he could leave. Then I walked away before I cracked a tantrum myself.

He didn't follow me out though. He stayed in the toilet playing with the little musical mobile that hangs off the doorknob, and seating himself on the toilet. I didn't care, I left him there. Too stressed out. Hubby was walking by and noticed the boy in there, sitting on the toilet with his jocks still on and playing with the musical mobile, and asked me if I was aware that little man was sitting on the toilet with his jocks on. I was. I didn't care. If he wants to stay in there by himself, that was more than fine with me.

After some time, I noticed the music had ceased. I wondered.... has he done something? He hasn't come out, but he's stopped pulling the string. Better go check on him. Sure enough, there he was standing up in front of the toilet in a pair of wet jocks. He wasn't distressed - in fact, he was sort of smiling. His jocks were soaked through and there was some in the toilet and just a couple of drops on the seat. Nothing on the floor though!

Needless to say, I made a really big deal out of it for the little man, until in the end, he was laughing and clapping for himself too. But I have no idea if he has understood what he did.

Is it success if it was a complete accident? Does it matter if it was an accident, but still sort of caught on the toilet? Is it really 'caught' if he had his jocks on?

I really don't know what to make of it. The only thing I do know is that it confirms my theory of him not wanting to wee or poop in anyone's presence (which is something I can totally understand!), because he never does anything when anyone is paying him attention. Whatever it is, coincidence or not, I am trying to encourage him to sit there on his own now, without me 'supervising'. It's a good pattern all 'round I think. Not so inconvenient for me, because I don't have to sit there with him; good for his independence in general; and it might just enable him to actually let go on the toilet, since no one else is around.

6.5 weeks into it, and I am SO over it. He sits and stands and sits and stands. Still far from properly toilet trained, but may have caught something on the toilet finally?