Retrospect: Part 3 - Questions And Quirks

This is a long, long post. Grab a coffee...a bicky or two - maybe even some chocolate - and get comfortable for 10 or 15 minutes. If you get through, thank you for reading. If not, I totally understand :)

Sometimes it still baffles me how I never cottoned on that there was something not right with my son. Seriously, how could it not have occurred to me? I noticed so many strange little quirks.... so many oddities that didn't line up with what I expected to see at certain ages. I always put it down to something else. The usual reasons I suspect that most autism parents go through. Three of the main ones:

1. He is a boy, so he must be different. I've only had girls so far, and I don't know about boys.

2. He has a gentle nature, he is just a placid child.

3. He might be a bit lagging in development, but all kids develop at their own pace, I should not be alarmed.

Bear in mind that I already had two babies before, and - boy or girl - I knew what to expect at various ages. I shouldn't have made excuses for the quirks I saw, but I doubted myself. I didn't trust my intuition. It is a problem I have had since I was small.

Looking back now, I know that these were all characteristics of his Autism.

As a newborn....

Oh, he slept so much. He always was so placid and just slept so much. For a long time, he didn't seem interested in the world around him. He was difficult to wake for feedings. All he wanted to do was sleep and lie there quietly. Although it worried me some, I still thought I was lucky. However, early on I remember noticing with delight how he would study my face. I thought I had such a clever baby, to be looking at me so intently from such a young age. Now I just think he was stimming off the blink of my lashes, the movement of my mouth as I spoke to him, the line of my eyebrows, etc. He didn't make eye contact, he would just regard my face for a long time.

From the start, he had difficulty with breastfeeding. Once he was latched on, he had a good strong suck, so initially, I thought he was fine. But in the hours following that first feeding, I noticed he was having a lot of trouble latching on. I didn't think much of it at the time, because all babies are different. But this went on for some time. Longer than it should have. He just didn't seem to know how to open his mouth. He would pucker his lips and make a tiny "o" shape, but couldn't open wide. At six weeks, when he should have well and truly had a grasp on the skills needed for feeding, he was still having trouble working it out. I remember sitting on the couch in the middle of the night once, holding a starving, crying baby and just crying my eyes out, because I had been trying to latch him on for at least half an hour, and he still wasn't getting it. Such a simple thing - to open his mouth wide enough - but he just couldn't get it. It was months before he had the right skills. Even with all the difficulty I had breastfeeding the girls, it never took them this long to work things out. I was baffled and stressed. Why could hejust not get it?

Similar to feeding, it seemed to take him a long time to retain the dummy in his mouth when I gave it to him. He would suck for a little bit, then lose it. It took him way longer than it should have to figure out how to keep it. I always wondered why it took him so long. The girls seemed to get it almost immediately.

Diet...

Making the transition from pureed food to chunks is always a little tricky for a baby. They often gag at first as they are working out when and how to chew. But it usually doesn't take very long before they get it. My Little Man had a lot of difficulty with this. So much so, that I had to actually go back to the purees for a while. Every time I tried to introduce chunks, he would gag and gag and gag. He just couldn't 'get' it. Some days I wondered just how much he was actually eating, because he struggled so much. What was even stranger, was that with finger foods - where he had to bite and chew - he was fine! But a casserole or similar would send him gagging something awful.

At about 18 months of age, Little Man suddenly stopped eating his veggies. Until that time, I was able to feed him pieces of broccoli, cauliflower, peas and even carrot. Just before I noticed this change, we had been away on holiday. During that time, I hardly cooked - we ate out and we ate a lot of fish and chips. The only thing my son would eat off the restaurant menus was chips. So when we returned home, I thought he was just being fussy in the normal toddler way, because he was 'spoiled' during our holiday.

The last veggie to go was peas. He ate those for a little while after he dropped everything else. I remember he had some sort of test for which ones he would eat, and which ones were rejected. It was very cute. He would pick up each pea, squish it between his fingers, then either eat it, or reject it. Eventually, they all got rejected along with any other vegetable and meat pieces. One thing I found most frustrating, and strange, was that he refused to eat his dinner most nights, but had no problem eating soap. Yes, soap!! He would grab the soap bar when I wasn't watching and eat it... bite chunks out of it! Coughing and spluttering from the taste, he would still go back for more. I could never understand it! I know now that it was the smooth, silky feel of it in his mouth that he was craving. But boy it stressed me out at the time.

About a year ago, I attended a seminar on diet in children with autism. It was there that I learned how the brain processes chewing and swallowing. I found out that my son could only handle one texture at a time, it was the way his brain worked. That explained why he struggled so badly with chunky food in a gravy or sauce, but was perfectly able to eat a biscuit or chicken nugget. It also explains why I still have to chop his casseroles into tiny pieces and mix them with rice for him to be able to eat them - consistency of texture. He still cannot handle pieces of vegetable or meat separately on a plate. But I'm not sure if it's the texture, or the flavour of those foods, because he will eat several kinds of fruit with no problem. He will also eat chopped sausage and of course, chips. But that's it for 'pieces'. Until this day, his favourite things to eat are smooth foods - banana, yogurt, soft cheeses, ice-cream.

Did he hear me....?

One of the more classic signs of autism - he would not respond to his name, and certainly did not come to me when I called him. He was at least 15 months before I really noticed this. But then I was wondering why... why? I'm sure his sisters, at this age, understood when I'd tell them to 'walk with mummy'. But my son? - he just didn't seem to hear me, much less understand!

Independence.....

Little Man was not interested in feeding himself with a spoon. He wasn't interested even until after we had our diagnosis. I kept wondering when he would try to feed himself, patiently waiting. When... when... when...? It's so interesting now to see how my Baby Miss wanted the spoon out of my hand almost as soon as I started feeding her. I had forgotten what it was like with the first two. I was patient, and never panicky. I waited far too long with my questions.

He doesn't play....

I wondered and worried because he never seemed to be interested in toys. He didn't play with them in strange ways, he simply wasn't interested in them at all! I would set him down to play, and it was very hit-or-miss as to what kind of toy would interest him. He might fiddle with something for a few minutes, but inevitably, he would end up staring out of the window at the trees swishing in the breeze. Or just sitting contentedly and staring at the blinds. At first I thought it was because I didn't have enough 'boy' toys. Or maybe I just didn't spend enough time with him. But even after buying him a whole bunch of stuff, he wasn't interested. Unless it had lights. If a toy had lights, movement or music, it might be ok. Might be.

In the same vein, Little Man never really explored his environment. You know how pre-toddlers start to just get into everything? Every cupboard, drawer, box, bench top. Through any doorway, into the cats bowl or the bathroom.... Little Man was never interested. He used to drive me crazy just following me around. Always under my feet, or clinging to my legs. I couldn't get anything done. I was certain I hadn't molly-coddled him, but I couldn't distract him with toys. He was either following me, or just sitting and staring. Both bothered me.

I remember that he never looked in the cupboards and drawers, he would only bang their doors by opening and closing them several times. Every morning, he would come out to the kitchen and go along the cupboard doors, banging them several times each. And he took so much joy from this! It was annoying, but I actually thought I was so lucky to have a kid who wasn't getting into them and breaking the plates, etc. I thought he was such good little boy, so I never chased up the fact that him not looking into them was unusual.

Has to be the same....

I used to have these red pyjama pants that I often wore around the house. One day, as I was in the shower, my son came into the bathroom looking for me. He looked at me with a confused and frightened expression. I will never forget it. He seemed genuinely upset that I was in the shower. I wondered why it upset him so much. Instead of being fascinated, as his sisters were at that age, he began to cry. A moment later, he went into my bedroom and retrieved those red pyjama pants, and brought them back to the bathroom. He shoved them at the glass trying to give them to me. He was so upset. I finished up and came out to dry myself and get dressed, trying to talk some comfort to him. He kept shoving those pants at me. When I got dressed in something different, and picked him up, he seemed a little better for having mummy out of the shower, but all day, he kept bringing me those red pants. He did that for weeks. He wanted me to always wear those red pyjama pants.

I find it interesting that now, his most favourite colour is red. Followed by yellow and orange.

Not mouthing on things....

He never put things in his mouth either. I never had to fuss too much with small toys that were left lying around, or crumbs, or rubbish, because he never put things in his mouth. Again, although this bothered me, I thought I was lucky, because I didn't have to worry about him choking.

It seems to me that he has now caught up to this developmental stage. Nowadays, he constantly puts things in his mouth, and I'm not sure if he's just exploring his environment or if it is a sensory thing.... I tend to think the latter, but honestly, I don't know. What I do know, is that a four year old boy chewing on toys and other items looks... well.... odd... and that I must constantly be watching for choking hazards, now, when we should be past it.

Excessive dribbling....

Again, so different to the girls. And again, could have been for any reason. My son dribbled alot. So much so, that I had to constantly have a bib on him right up until he was almost two, often going through two or three a day. And even then, often his shirt would be wet from dribble. I knew that some kids just dribbled more than others, and again, I thought it might just be a 'boy' thing, but it bothered me because his bibs often had pink stains on them after being washed. I have no idea why the dribbled parts stained pink after washing, except to think that maybe there was some sort of reaction of his saliva with whatever detergent I was using. He was not a refluxy baby....he never had digestive problems. Never. So it really baffled me.

He has only just recently started to keep his mouth closed for most of the day, and in the last 18 months or so, really started to be able to properly swallow his saliva so that he isn't so dribbly. I know now that all of this has to do with the neurological and motor functioning of the muscles in that oral area... his cheeks, his tongue, his throat...all of it affecting his ability to eat certain foods and to produce speech. As a baby, it struck me as unusual - especially for my children in particular - but now I know why he dribbled so much.

Stressful shopping....

Taking my son to the shopping centre was a regular occurrence for me when he was smaller. As we'd walk in - always the same entrance because I am a creature of habit - he would become very excited. It was sweet to see. Made me smile. He was happy to be there. The lights, the sounds, the smells, it was all pleasant to him. But as he got older, he began to quickly tire of it. He'd be happy at first, but after a while, he'd start whinging and crying. This baffled me. It was too early for his nap, too early for his lunch, and it wasn't like he was bored - after all, he hardly played with stuff at home, and there was heaps more to see here! I am still not too sure what the problem was, but I do remember I had to often lay him back in the pram, and place a blanket over the hood - the same way I'd set my babies up to sleep whenever I was out with them. But I was right, he wasn't tired. He would not sleep. But he would settle. He'd be quite happy just looking out the small window in the hood, or peeking through the sides. This worried me. I felt like a bad mother for 'hiding' him away.

I know my sons stims were always visual and licky. He quite enjoyed looking around at bright and stimulating things. But I wonder if it really did get too much for him? Even when I found out his diagnosis, it never made sense to me that he was overwhelmed by being out shopping, because he seemed to like it so much. So I still am not really sure why it bothered him. But one thing I do know... that reaction was not normal. My daughters did fuss sometimes when out shopping, but only if they were sick or tired. My son seemed to fuss for no particular reason. It made me wonder. Looking back, I can only reason that perhaps he was annoyed if we didn't follow the same 'pattern' when walking around. One thing that bothers him when we are out nowadays, is stopping inside a smaller type shop to look at something or make a purchase. He hates the smaller shops - feels too claustrophobic maybe? - and stopping anywhere is an issue for him. Must keep moving. I wonder if that was the case back then too. I don't remember specifics, only that I had to hide him away.

He didn't babble.....

Speech and communication was always a big one for my son. You know, when you have a baby... you hang out for the first smile... that first word...that first meaningful communication. You listen to the babble with such delight in your heart. Your little one looks up into your face and babbles a string of gibberish with such tone and inflection and excitement. You just hang out for that first real word. My son never did this. He would make noises, but never really babbled. In the early days, I was confused... I didn't really notice the difference. When I did, I thought it was another 'boy' thing. Boys make noises, girls try for words. He would make strange honking sounds, or scream. Or else he would hiss quietly. There was never an in-between, never a normal vocalisation. I remember waiting and waiting and just hanging out for that first word from him. I remember that I started getting really antsy about it by the time he was 18 months... there was nothing. Nothing at all. Not even close. I remember feeling secretly quite worried by the time we had to go for that fateful nurse check up. But again, I pushed those worries aside. I didn't trust my intuition. (But the nurse quickly rectified that). There was never any babble from Little Man. Even now, there isn't very much. A little bit, but nothing very substantial. He is four. Now that Baby Miss is babbling all day and has been for ages, I remember what real babble sounds like. Now I look back and nod.... he definitely never babbled.

He was affectionate, but in a different way.....

Little Man only ever gave affection on his terms. He would tolerate a hug or caress, but didn't really seem to savour it. Hubby agreed with the Paedie totally when she suggested Little Man went stiff or even tried to move away when someone hugged him. I disagreed with that one. But I will concede that he never seemed to 'love' it. He certainly didn't mind me hugging him. But when I'd reach out to him from across the room, he never reached back. I was lucky if he even looked my way. He never reached up from the cot or the ground when he wanted to be picked up. He never really asked for a hug in the normal way. If he liked a person, he would put his feet on them. If he wanted comfort from mum, he would lean on me. That was his way. I thought it was my fault... I wasn't taking him out enough. I was not social enough. We didn't have any friends that we really spent much time with, etc etc. I always blamed myself.

Grandpa with Erik & Josie. Josie always settled in her Grandpas' arms. Erik just looks uncomfortable.

Aversion to textures....

When I was pregnant, hubby bought a cute little squeaky teddy bear for the baby. When Little Man was born, we put it in his cot with him. It was going to be his attachment thing (yes, you can influence what that will be sometimes!). He never touched it. He liked to look at the teddy's nose - a black spot on his face. Or the patterns on his feet. When he finally did touch the teddy, it was only to flip it around and look at the patterns on his feet. He didn't like touching that teddy, or any other teddies. He cringed at a touch from the cat. When he fell over, he would fist up his hands so he didn't have to touch the grass, or carpet. He didn't like touching anything fluffy, grainy or rough. He liked to touch water, smear yogurt, touch and lick soap. Anything smooth was fine. I was sad that he didn't like the teddy. And sad that teddies and plush toys in general didn't interest him. In fact, they seemed to frighten him. I always though that was strange, and it made me sad.

Prophetic....?

I have blogged before about the other children in my extended family who have disabilities. One thing I didn't say, was that before we found out about Little Man - when I would talk about my sisters and our children - I always felt so guilty, because I was the only one in the family with all 'normal' children so far. So far. It was like I knew, somewhere inside that something was going to happen. I remember chiding myself one day, thinking; I shouldn't talk like that. It sounds like I'm waiting for something to happen to us too. Then, of course, something sort of did.

Maybe somewhere inside, with all those quirks and all those questions, I really knew? Maybe I knew on the day he was born. I remember telling my mum, with a lump in my throat, that this boy had a gentle soul... a very gentle soul. But why did that make me so emotional? Maybe I knew even before he was born. For some reason, the notion that my baby might be born with some kind of problem kept nagging at me. Nipping at my heels the way an annoying dog will harrass you. I put it down to seeing my niece and nephew born with a disability. That maybe I had become paranoid or something. Funny how I never had that feeling with any of the other pregnancies. Even with the one after my son, I was only concerned that, given the statistics, our next baby might be autistic too. But even that felt different, just - I don't know, different - to what I felt when pregnant with Erik.

There were so many other things... too many little oddities to mention them all. Remembering that he never liked bubble baths, he never cried for me in the middle of the night, he never tried to climb on chairs or tables (Lord knows he does now though!), so many little things...

All I can say is, at the time, despite the odd things I noticed, I never saw a diagnosis of Autism coming. I honestly can't believe I didn't. It was so obvious. So very obvious.

xx

A Word In Time

I got some lovely gifts this year. A gorgeous ring, Kylie Minogue's 'Darling' perfume, $100, some Masterchef kitchen gear, a punchbowl, electric knife.... truly spoiled. But the best gift wasn't any of these nice - and they were really nice - things. Sorry mum. Sorry honey. Sorry all. The best present I got was from my son.

I'm sure you could all see that coming! I wanted to share it with you anyway.

Boxing day, in the evening.... we were sitting on the couches altogether with my SIL and her hubby. Just hanging around. TV on, not doing much. Little Man had been climbing over the back of the couch onto me, but was now sitting in my lap, slouched, as is his way. I started playing a game with him. He opens his mouth and says "Aaaaaahhh" while I bounce my hand on his mouth to make the sound turn into a "wa-wa-wa" sort of thing. He loves it. This is in itself a big step, as just a few months ago, he couldn't purposely produce the "aaaahh" vocalisation required to play this game.

So there we are, wa-wa-wa-ing. He laughs and giggles. He loves this game. He takes my hand and places it over his mouth to indicate more. After a few rounds, I took my hand right away and asked him...."More? More wa-wa?" He becomes very still, a look of concentration comes over his face.

"Mmmmmm-ooohhh".

Ohhh. Wow. A word! A single word in appropriate response! Just. Wow. Best present this Christmas!

Hope yours was as lovely as mine.

xx

School Concert

My big girls have their school concert on two separate nights. Which is really annoying, but anyway. The first night, I could not attend, as I had my own graduation from a cake decorating course I have been taking for the past year or so. But hubby went, and the little ones stayed at grandma's. On the second night, I went and took the little ones with me......

The whole time I was wondering how Little Man would go. Noise is not an issue for him normally, so I had no concerns there. My concern was that he would not - could not - sit still or remain in close proximity for the duration of the concert. That he would try to abscond, meltdown because he is not allowed to run, climb on people, etc. Sometimes, for reasons that are obscure to me, he refuses to enter a building, point blank, and forcing him to do it just results in a meltdown.

After dinner, we loaded up into the car to go.

If you are regular reader of my blog, you might have noticed by now that I tend to talk my son through things in the hours or minutes immediately prior to the event, and even as we go through it. Trying to prepare him earlier is pointless, as he has no conception of time and struggles to understand anything that is not concrete to him anyway. So as we are preparing to leave, I am preparing him for what we are doing and where we are going. I don't know how much he takes in, but I am convinced that this sort of preparation has helped greatly on more than one occasion.

He was quite happy to climb into the car for a little excursion. I don't know where he expected to be going, but I tend to think he understood that we were going somewhere a little out of the ordinary, because he was quite compliant and seemed pleased to be getting out somewhere. He knows where the school is, but we didn't park at the school. Way too packed. Nowhere I'd find a spot. So we parked at the shops close by and had to walk a few hundred metres to get there. Unfamiliar.

We put Mr Monkey on, popped the Baby Miss into her stroller and off we went. He didn't try to abscond, but he wasn't always paying attention to the direction we were walking in, and sometimes tried to walk a different way. Bringing him back was not really an issue, but he didn't want to hold my hand. So all that, combined with him dawdling and stimming all the way, made for slow going.

We finally arrived at the school hall, and chose to sit at the back, close to the doorway. Any autism mum who reads this will immediately understand why. But for the sake of explanation, we like to be near the door in case it is necessary to leave the area quickly if there are any meltdowns. There were no chairs provided and we were not allowed to bring any. So we made ourselves ...comfortable..? on the floor. Hm. Might be okay for the school kids, but I know my 33 year old bum can't take that for too long! No use complaining. We had brought a couple of cushions, so I guess it was bearable. We parked ourselves and waited for the concert to begin.

Little Man had been quite happy to come along with us the whole time, but sitting down? Uh-ah. Normally, he would circuit the perimeters until he was comfortable with his environment. But being restricted by Mr Monkey, my boy had to content himself with standing up and visual-stimming off the boundaries and windows in the hall. I didn't have a problem with this. He needs to process his surroundings, and he is not annoying anyone. Once that was done and he was comfortable with the environment - which was quickly filling up with people - he decided that bungee-running to the end of Mr Monkey's lead, and pinging back and landing in mummy's lap was the way to pass the time. I briefly considered the iPad hidden away in the baby bag just to my right.....

...Oooff!

For the next 30 minutes or so, I had nearly 20 kilos thrown at me over and over and over. I am sure he nearly broke my legs a few times, even with arms out ready to catch him and bounce him like a baby on my lap.

First song was done. Applause. My son nearly jumped out of his skin. The look of panic and fright on his face from this sound he wasn't expecting was really saddening for me. He tried to run, but then turned around seemingly to find mum instead. Yet he wouldn't come to my arms for comfort. It was like he didn't know what to do with himself. Thank God, this did not trigger any meltdowns. He eventually settled down again.

Fortunately, after some time, he decided he had had enough bungee running, and slouched on my lap instead - head against my shoulder and legs spread out over mine - and set to madly chewing on the plastic baby toothbrush I had brought for him. I have never seen him chew and lick so madly in my life. Very glad I remembered to bring that, or he might have been licking his shirt, the pram, my hand, anything he could get to!

Second song done. More applause. Same reaction. Only he tried to jumped out of my lap cat-style! He tried, but all he managed was to stand up, turn around, and then freak slightly before I could coax him back to my lap. This happened after every song, even when I tried to warn him when it was coming. I began to worry that it would elevate his anxiety levels too much and set him off. Just as things were looking borderline, and I began to look at the door in anticipation, something seemed to switch for him....

Instead of starting so violently at the applause, he simply looked up, shifted in my lap a little and was content to let me squeeze him and talk him through it. Now this is an improvement!

About 20 minutes before the end, Hubby arrived. And just in time too! Little Man had decided he was rested enough and it was time for more bungee landing on mum! Daddy blessedly took him off me so I could sit for the last few minutes in peace. Good timing, because it was now my Big Miss's turn on the stage!

There she was, precious and all grown up in her hip-hop dance costume - and right in the centre of the stage! She did very well, and I couldn't have been more proud. This means a little more to me than it normally would, because Nejla is very shy. Being the centre of attention is a thing both coveted and feared by her. Well done honey.... so proud of you :)

Last song done. Applause. He didn't even flinch. Wow!

Concert was done and it was time to go. We did it! Hooray!! I am amazed at how well we got through it, and really pleased to see how well Little Man adapted to his circumstances.

...And we didn't even have to pull out the iPad :)

xx

Moving Is Done

So here we are, mostly... almost mostly.... settled into our new place. We've been here just over a week now. The arrangements between the two families are working out really well, and we are all super happy with how it is going. The big girls are delighted with their new room - it has pink walls! All kids eat their meals on a bench top rather than around a table, and this has been an unexpected blessing. My son remains on his chair because his feet can't touch the ground, and everyone's dishes and mess stays in one spot close to where it can be cleaned up.

But how is the Little Man doing with the changes..........?

The answer to that is.. Fantastic!!

After spending a long day at grandma's while mummy and daddy were moving and cleaning, Little Man was desperate to be in his own bed. He had fallen asleep on grandpa's couch not long before I arrived to get them all. When I went to collect them, I spent a few minutes in the car preparing him to arrive at our new house. "Home to the new house" were the exact words I used. When I turned the different streets, there was no complaint. Good sign. But when I pulled into the driveway, he began to whimper. Wait a sec.... this is not where I actually want to be!

I got the girls out and sent the Baby Miss off with them, but Little Man would not get out of his seat. The more I tried to coax him, the more he protested, until I could see that he was building up to a full blown meltdown. Before this could ensue, I grabbed him and carried him in while he cried and protested, all the while talking him through the changes.

I gently put him down once we got inside, but he immediately began to drop to the floor. This means he intends to tantrum. I quickly picked him up again and carried him straight to his room. My rationale was that if he sees something familiar, he might be ok. Once I placed him on his bed, he stopped complaining. He seemed surprised and pleased to find it there!

At first, I had intended to allow him to roam the place a little before going to bed, but Erik seemed to have no desire to do this tonight. I couldn't get him off his bed. In fact, he quickly curled up ready to sleep. Hmm... new room or no new room, this boy wanted to be resting in his own bed, doesn't matter where it was. I managed to change his pants to pj's, didn't bother with the top... he was too contrary. I tucked him in, sang 'Jesus loves me' to him and prayed. As I kissed him goodnight, he was smiling. Ahh.... this was just what he wanted. Mum, routine, and a familiar place to rest. He slept peacefully all night.

The next morning, I woke to find him perched up on the corner of his bed staring out the window. He was happy. When I came in, he started hissing and making his happy sounds. He smiled and contentedly came out to the main living areas with me. Watching him as I prepared breakfast, he seemed excited at the new place. Oh, there was no problems here. None at all. My boy is settling in as sweetly as any child, albeit somewhat differently.

The second morning in though, Little Man noticed my BIL getting himself breakfast, and decided that he wanted it. Poor Uncle Jay was there trying to eat and gently fight off a screaming boy at the same time. I hurried to get my son his own breakfast, and managed to wrangle him away from my BIL to sit at his place on the bench and eat. But I think it might take a couple more days before he understands that he must wait for his own food and not bombard poor uncle Jay for breakfast! In the meantime, my BIL has been taking his breakfast to eat in the peace of his own room.... and I can't say I blame him!

Moving is done - so glad the hard part is over and we can now concentrate on nesting in. Thanks to all for your kind thoughts and well-wishes! Hope to get back into a groove before Christmas is upon us......

xx

Moving House

We are moving house in a couple of days.

We returned from Queensland to find a note in our mailbox for an item of registered post that we had missed and had to collect from the post office. I didn't get around there till 2 days later. It was a notice to vacate (obviously we are only renting - desperately trying to save up a deposit to buy our own place). I was shocked and upset. We are good tenants. We pay in a timely manner and take care of the premises well. We have a good rapport with our landlords. Some inquiries to the agent revealed that our landlords were in fact retiring. They had sold their home and wanted to move back into this one. So of course, it's time for us to go. They were also quite sad at asking us to leave, and expressed that we were good tenants and that it was nothing we had done. That was a relief to know, because it meant that we would have a very good reference when looking for a new place. And a new place was indeed found in a very short time. And so, here we are.

Half the house packed and still lots more to go. We have way too many toys and more books than one family should rightfully own. Both hubby and I are hoarders. My daughters both seem to have got our genes, especially Big Miss (eek! She is BAD!), so it really is shocking how much stuff we have. The good thing is, I do occasionally get crazy and start throwing things out. But since we still have a little one in the house, I can't really get rid of the toys just yet.

My SIL and her hubby will also be moving in together with us - it is a big house, five bedrooms and double story. Big living areas. So there will be plenty of room for everybody. We will share the rent and utilities, and so this way, both families get to continue saving for our own homes. There are lots of positives with this move, and we are all looking forward to it, which is great.

Some definite perks for me....? A DISHWASHER!!! Yay!!! - and a sink with a double trough! So no longer will I have to wash a family of six's dishes all by hand in a single tiny sink, I will have a dishwasher. SO excited about that!

It has TWO well-designed pantries!! Currently, this is what I have to work with......

A horrid tiny little thing where most of the storage space is cramped behind a wall!! You know... one of those L-shaped designs? No wonder everything ends up on top of itself...with a family of this size and a mummy who cooks alot, there is just not enough room! It's a very poor design and I have expressed on many occasions how much I really hate my current pantry. So that's another thing I'm really looking forward to.

It will be some time I think before we settle in properly. There are some things that need to be done around the new place in order to make sure it is safe for Little Man. Some concerns I have are that he will escape out of the backyard due to fencing not being secure enough - we need to fix that. And that he will push his little sister down the stairs just by way of 'moving' her out of his path-pattern. Might put a safety gate in front of that one. And I think, given some of his more recent discoveries and habits, we may need to start considering locks on the fridge and pantry - and the big girls bedroom door.....

If you don't hear from me before we move, it will be hello from the new place :) Better get back to packing.....

xx

In The Hospital At Miles

The morning after we arrived in Dulacca, I was changing my son's clothes when I found some mysterious bites on his feet. There seemed to be a little swelling, a little redness - alot like a mosquito bite that has been freshly made. There were at least three or four on his feet. I didn't like the way they seemed swollen though, so I gave him some children's antihistamine, and decided to keep an eye on them.

As the day went on, the swelling slowly got worse. He spent alot of time just laying around on his bed. Most of the morning in fact. He didn't want to come out and play or eat at all. I would coax him out to play, and as soon as I'd finish a game, he'd just go back to his bed. After some time, I carried him out and sat him on the couch in the lounge room. He was happy to be in company, but - unusually for him - he remained seated on the couch. The swelling was much worse by now, but hadn't moved past his ankles. Being in the middle of nowhere, I was not convinced it was worth a trip to a hospital or doctor at this point. He had no problems breathing, and there were no other issues besides the swelling.

But then I saw him visibly uncomfortable when trying to stand on his feet... when I saw him very consciously and carefully climb back onto the couch to sit...something clicked inside.

He was in pain.

It's so hard to tell when he is hurting, not only because he simply can't tell me, but also because he just has a high threshold to pain anyway. So seeing him react this way to the swelling immediately triggered a panic inside me. He must be in agony to show this much reaction.

We decided to ring the hospital in Miles, the next town, for advice. They basically said to come in so they can observe him. It seemed like so far away, but in reality, it was less than an hour to drive. I guess it seemed far to me because where we live, we have clinics all over the place and a hospital barely 25 minutes away. (Having said that, we'd usually have to wait about 1 hour to see a doctor anyway).

When we got to the hospital, they immediately took him in to be checked. No waiting. It was wonderful. The doctor on duty didn't really know what to make of the bites. We were pretty sure they were not spider bites - I am still certain they were just mosquito bites. From little black mosquitoes. Different to the ones around home. But he seemed to be reacting to them badly. As we were inspecting, I noticed another huge lump on the side of one knee, one on his right wrist, and more lumps around his feet. The only thing that concerned the doctor was the formation of blisters at the site of the bites. Little Man's feet had swollen so much, that pockets of fluid had built up at the bite sites. This didn't seem to fit what she understood about allergic reactions, so she referred it to the regional paediatrician, in another town.

Honestly, the pictures here don't show just how bad the swelling was.

But it gives you some idea of what was going on at least.

So photos were taken and emailed off, and we waited for a response.

They didn't know what to make of them.

Another doctor was brought in to check his feet, someone more senior in position than the first doctor.

She didn't know what to make of them either.

By this time, Hubby and I were sort of looking at each other askance, wondering if these people knew what they were doing. Fortunately, our son was managing ok... especially given that it was way past his bedtime by now, and he was extremely tired, and in an unfamiliar environment. He cried and wouldn't stop moving long enough to get good photos. He fell asleep, then had to be woken for various checks every 20 minutes. Needless to say, he was not impressed. But given what we all know about kids on the spectrum and their tendencies for meltdowns, he was doing very well.

Some of the blisters had popped or wept and crusted over by now. And much of the swelling was reduced.

Basically, the conclusion was that although the source of the bites was unknown, it was an allergic reaction of some sort (ya think??). He was prescribed phenergan and prednisolone to manage the symptoms, and admitted overnight for observation.

And so my son and I spent a freezing night in a country hospital, (it turned out to be 3C that night, and the air conditioner was stuck at 'on' all night - freezing!!), with the loveliest hospitality but questionable abilities. I didn't panic anymore once we had been checked, but I was concerned about getting my son to sleep in a hospital bed. As it turned out, I didn't have to worry... the phenergan took care of that.

Waiting to be collected the next day was very stressful. He was well enough to walk around, and was no longer satisfied sitting in a hospital bed. He kept trying to abscond. We had tantrums and tears. I was starving, cold, feral and in desperate need of a shower.

Our ride finally arrived and we were discharged with instructions to keep his feet covered when outdoors to protect them, and continue with the medication, presumably until the swelling is gone - but they didn't actually specify how long to continue it.

I remember thinking with a strange kind of sick humour that I should be awarded a ribbon of some sort for my first night spent in hospital with a child, by someone who was far more experienced than I - my little sister. The experience wasn't entirely unpleasant, but it was very annoying and most inconvenient. I am very consciously grateful that it wasn't for anything more serious. And I am glad my son's feet are ok, and that he recovered from the swelling alot quicker than expected.

xx

Red Egg & Ginger Cake

This cake was made for a friend who held a red egg & ginger party for her son. I had never been to one of these before, much less made a cake for one! So I was really pleased when she asked me to do a cake for her.

In keeping with the theme, the cake is ginger, sandwiched together with white chocolate ganache to add some sweetness in contrast to the spiciness of the cake. The giant red egg was nestled in a chocolate nest, and the iced writing was gilded with edible gold for the perfect finishing touch.

I fell in love with the sleeping baby on the egg.... so cute!

xx

Sons Of Anarchy Cake

I made this a while ago for a friend of ours turned 30. It was my darling husband who kindly volunteered me to do his cake. Please don't get me wrong, I LOVE doing cakes for people - especially good friends - but at 3 days notice!!? Aarrgh! So I had all of 3 days to design, plan and make this cake, which is why the logo and rockers are very, very simple.

The idea for the theme came from hubby, and judging by the reaction of the birthday boy's friends and family, it was just perfect.

It was chocolate cake with jaffa ganache - absolutely delish! And yes, he loved it :)

xx

In Dulacca

Dulacca is a tiny little town about 5 hours west-ish of Brisbane. This was our next destination after the first few days on the Gold Coast. The purpose of this visit was to attend my Father in Law's wedding, where my husband was to be the best man. Little Man was much better at accepting the new environment this time, though he still chose to circuit one room for most of the evening. We stayed with family this time, so the bedroom set-up was very different to the one at the Gold Coast!

All the children were in one room together - which suited me and them beautifully! They think it is fun and love being in together. Little Man loves it too, and I love that he loves the company of his sisters. His bed was a mattress on the floor - he had no issues sleeping in it at all! All we had to do was put his 'blanky' there, and tell him this was his bed. He would put himself to bed at random times, and spent alot of time there, just being in his own space.

Little Man behaved reasonably well at the wedding. We had him "trapped" in a pew with us, and he would walk up and down along the kneeling plank (is that what it is called?? We don't have those in our church!) and periodically try to escape out into the aisle. Great-Great-Uncle Lenny was there to catch him before he could though. Those two were sweet to watch. Little Man really liked Uncle Lenny. He would lean on him and just loved to hang around him. I loved to see it, but felt really bad because my boy actually had pooped in his pull-up just as we got into the church, so I couldn't change it right then - and it reeked!! Uncle Lenny and my husband's grandmother who was beside us both said they didn't mind, but I think they were just very polite, hah!

My FIL has a dog, Radar, who seemed to take a curious affection to my boy. When Erik first saw the dog, he freaked anytime Radar came near him. But gradually over the next couple of days, he became accustomed to the dog, and ventured outside anyway. It didn't take long before he was perfectly cool with Radar following him around, and being a blue heeler, the dog would even try 'rounding' up my son to make sure he stayed in the right place. It was very funny to watch. Little Man would walk his circuit around the back yard there with the dog gently nipping his heels every so often. Erik would frown and look at the dog as if to ask 'what are you doing?', but then just continue on his merry way.

Maybe it's the way they interacted with him, or maybe it's some kind of other sense that Radar had, but he certainly treated Little Man differently to the girls. He was so much more gentle with him. It occurred to me that now might be an idea time to get our son a pet of his own. A good dog like Radar to interact with and have as a friend. The benefits of animals and pets are well documented, and it is common for people on the spectrum to have a special relationship with their pets. With my son though, we never really saw him take to animals very much..... until now. Unfortunately, we also know full well that we don't have the time to care for or train a dog properly right now, so it would really not be a good idea to get one just yet. But it is definitely something we are aiming for.

In true country style, my FIL also keeps a couple of horses. On the day we were leaving Dulacca, we went off to feed them for my FIL, as he and his new wife had left for their honeymoon. We put Little Man on a horse for the first time.

....Not that boys are better than girls, but when Little Man was born, something my husband really looked forward to was having a little mate to share his life with and pass on his interests to. Erik is our only son. Finding out that he was autistic was a blow in many ways. But we have learned that it doesn't mean the dream is necessarily wiped away. It might just be a little different in reality, that's all. So we put our boy on a horse for his first 'ride'. I don't think he minded one bit, although he did seem to feel a little unsteady. But hey, who doesn't with their first time on a horse! He also studiously avoided touching the horse! - Just his aversion to textures coming through.

Yes, that is my hand there holding him steady, haha. I just couldn't let him go! Not yet, anyway. But I'm sure the time will come.

The stay at Dulacca was mostly without incident, though there was one thing that had my son and I spend a night in the local (next town!) hospital. But more about that in another post.

xx

At The Theme Parks

As you can imagine, I was more than a little nervous about taking my boy to the theme parks. How will he cope with all the people? How will he cope with being on his harness all day? Will he try to abscond? Will he tantrum when he can't walk his own way? What about all the waiting we will have to do for rides and such? Lots of questions.

Didn't stop us though. While I was tempted to stay at home with him sometimes, I wanted this experience for him as much as for the big girls. I also knew I had help on hand if I needed it, so off we went.

We went to SeaWorld and Warner Brothers Movie World. Movie World was first up. And the first test of the day: Lining up at the front entrance to get in. This was annoying. Long, long lines! But he was good. He only tried to walk off once or twice the whole hour we were waiting. He leaned on me a lot ... nearly knocked me off my feet with his weight several times. Haha.. big boy :). Once we got through it was easy walking. I think it was a stimmy paradise for him, especially in main street with all the lights and colour.

Unfortunately, most of the day was spent waiting. And waiting and waiting and waiting. Waiting for dad and others to go on rides. Waiting for the big girls on their rides. Waiting to go on his own rides. Waiting for food. Waiting to have another turn. Lots of waiting. I don't think I realised how much waiting there would be. Compared to how many hours we actually spent at the park, waiting actually takes up a huge chunk of that time! And Little Man was amazing. I can honestly say, he didn't meltdown once. Didn't even tantrum really. He voiced his protest once or twice when he didn't understand why he couldn't just push to the start of the line and get on the ride. But for the most part, he was very good. And as the day went on, he began to understand how it all worked, and what was required of him.

On the carousel.

On the mini train.

I knew he would enjoy the rides, and I couldn't wait to take him on. They don't have many rides there for smaller children. At both Movie World and Seaworld, the main rides for kids were a carousel, a ride that goes around and up and down at the same time, and a mini train. Little Man's favourite was the second one. He looooooved the up and down movement! Grins of sheer delight on his face, while he tried to tolerate the breeze blowing in it - (he does not like wind blowing in his face or around his head). It made me so happy.

On the birdcage ride (up and down and 'round and 'round!)

But even we were not going on rides, there was so much to look at. Displays of water and lights, colourful fences with squiggly lines, lots for him to just stare at. And because I know that my boy likes to look, that was all ok with me. His favourite thing to watch though, was the roller coasters going along their tracks. Favourite by far!!

Lines in the cafeteria kept him busy while we waited for lunch to arrive.

Coming home after the long days was always good for him. Although he enjoys sensory input, he does tend to get tired and have enough - like any pre-schooler I guess. So he never protested going back to the car to leave. He slept well in his big bed (except for one night when he woke up at 12am and did not go back to sleep for 3 hours!), and began to anticipate where we were headed the next day. Because of the weather, most of our time was spent at Movie World, except for the last part of our trip where we actually stayed at the Sea World resort. It was too cold for Wet'n'Wild, but maybe we can do that later this summer.

I am so glad to be able to give him these experiences. While it is a lot of extra work for me - mainly mentally - and while freedom for all in our party is somewhat limited because of him, it is well worth the effort. I came out of this feeling confident that I could take my son on a plane if I ever chose to. And that is a big question answered for me!

xx

Baby Shower Cake

I made this cake for my friend's baby shower this weekend just gone. I wasn't sure if I was going to be able to fit it in with everything I have going on at the moment, but I really wanted to do it, and I'm glad I did. Doing cake was just what I needed right now. I enjoy it so much, and it's such a relaxing outlet for me, despite the late hours that go into making one.

My friend is a very special lady. Her and her husband had been trying for a baby for so long. Something like 8 years, before they conceived this child. The day she pulled me aside at church and whispered that she was pregnant, I couldn't wipe the smile off my face. So, so, SO happy for them. They are just the most awesome people, and they are both going to make such great parents. And so all of that makes this cake extra special, and I am so pleased to be able to do this for her.

You wanna know whats inside though, right? Well, I never did get a snapshot of the insides once it was cut, but I can tell you it was a cookies & cream mud cake with white chocolate ganache. It sounds rich, but actually, it was just really delightful. So many people raved about it that I wanted to go and hide, hah! I get shy, mmmkay?

I think this is the first baby shower cake I have made, and certainly the first tall cake I have made. So yeah, anyone who knows what they are looking will be able to see I had some issues with that tall cake, hehe. Nevertheless, I'm pleased with the outcome for a first try.

xx

I forgot to credit where I got the silhouette from! I certainly didn't design it myself - I can't draw to save my life, heh. This is where I found the picture, and the idea for the cake comes from a whole bunch of cakes after a google search for 'baby shower cakes' and 'pregnant lady cakes'. Credit where credit is due!

Travel And Changes

We did a crazy thing. We drove all the way from Melbourne to Queensland non-stop. With 4 kids and a trailer! The driving was shared between hubby, his sister and her hubby. Took 23 hours. Insane.

Overall, the kids did well - especially the big girls. But my little ones... they got very uncomfortable and irritable as time went on. Mostly through the night when they were trying to sleep. They kept trying to roll over, only to find themselves still strapped into their chairs. I felt so sorry for them.

So how did Little Man go? He did so well! He enjoys car trips, I think because of the sensory motion of the driving, so he was quite content to stay in the car. But he did seem confused. We would stop for food or toilet breaks, and after the first couple of times, he simply refused to get out of the car. It was too confusing to get out and then in again after such a short time, with what seems like no purpose to him.

When we stopped in the morning for breakfast, he refused to eat. It bothered me, because I knew he was hungry. In the end I gave him a banana and one of those breakfast twists, he ate while walking around the car. I was satisfied with that.

When we finally pulled in to our destination, all the kids alighted the car with such excitement, but my Little Man was still confused. This wasn't home! Despite his slight apprehension, he also seemed excited about the new place, and I was able to get him inside easily.

I brought him into the main living area and kitchen, and that is where he stayed. He would not sit at the table to eat his dinner - Macca's nuggets and fries. But he did eat most of it standing up. The nuggets I had to pass to him one by one later on, because he had gone back to his spot in the kitchen to stare at stuff and blow raspberries. Just processing I guess.

After dinner, a refreshing shower (/gasp!) and bed. The shower was amazing because he only gets into the bath at home here, though I use a shower hose to wash him - he refuses to sit down in the bath now. I don't mind though, because it is the next step to having a shower properly. This one was great, because it had an extended shower hose too! He wasn't sure about getting into the cubicle at first, so I ended up in there with him, all my clothes on - Hah! We went about the showering in the usual pattern, and he was perfectly fine with that. When I showed him to his bed at bedtime, I could not believe how excitedly he took to it. Little Man was lucky - he had a double bed all to himself! He was so pleased with his big bed, it took no effort at all to get him to sleep. I am pretty sure the exhausting drive had much to do with that too though. Tucked him in and prayed, and off to sleep he went. He slept peacefully all that night. I was rapt.

The next morning again saw him not interested in his breakfast. I was beginning to really worry by now, so the third morning we were there, I decided to try something completely different.

.... I served him Corn Flakes instead of Weet Bix.

My logic was this: That we are in a place completely different from home and the usual, so maybe - just maybe - he feels that the usual breakfast is just 'wrong' here? Maybe what is needed is a completely different breakfast too. New place, new patterns - right?

It worked! He came over and happily sat down to eat Corn Flakes! Boy was I pleased. Corn Flakes became his breakfast for the rest of the trip, and I am happy to say, he is still happy to eat them here at home. And the best thing of all; he hasn't given up the Weet Bix - he still eats that too. Yay!

Holidays and trips away are always an interesting time for us with Little Man. I never am quite sure how he is going to react to the changes and new things. Most of the time, I have to say, I have come out quite pleased with results. Because while I can see that he is anxious at times, he still manages change very, very well, and often comes home with some new positive behaviour of some sort - like Corn Flakes.

So out of this trip, we have come back with a new food added to his repertoire, and another interesting piece of knowledge about our boy: For the first few hours of a new environment, he does not eat. Not properly anyway. I believe it is his reaction to the anxiety he may be feeling while he is processing the changes. This is ok with me. Armed with this new information, now we can time our arrivals accordingly, or else arrange to have dinner 'on the road' so that I am satisfied he has eaten.

I am becoming more and more confident about travelling with my son. These trips are so good for him and for us. I love that he is exposed to new and different circumstances, and that it all adds up to experience for him to draw from in life. I love that this is one thing that we as a family don't have to give up (- yes, I thought we would have to at one point!), though the experience of it may change a little. Each trip we take, we learn a little more, and I am glad that Little Man enjoys the holiday as much as we do.

xx

Baby Miss turns Two

Yep, it's the little Baby Miss's birthday today :). I can't believe my baby is two! ...And no more little ones to come. Definitely finished! (Picture me signing 'finished' vehemently in the background here). I'm not going to write a long post about her this time, but I will refer you to the one I wrote last year on her birthday. Just because I still find it so funny.

On a side note; we have just returned from a trip interstate, so I will update more on that later on. Nice to be back though.

xx

Life Is Too Short

Last week, I logged on to my Facebook page to find a peculiar message in my friend feed. It was by someone I didn't have on my friend list, but who had tagged a friend of mine. That is the only reason I know.....

My friend had died. The message was asking for any memories of him to be written and sent in so that a book of memories could be compiled for his three young boys. I was shocked. Just completely shocked. I had only been speaking to my friend maybe two weeks before.... we'd had a long conversation about life, children, work, and other things. I could not comprehend that he was just gone. Just like that. He was just 33, and it was an epileptic seizure he did not survive.

As I was grieving, my nephew suddenly took a turn for the worse. He had been in hospital for around 2 months, basically in limbo, fighting to live. Making progress, then getting worse again. The night before my friends funeral, I got a call. Come in to the hospital... it doesn't look good. I was lucky to make it in there at all. I arrived to find the rest of my family already present. About 20 minutes after I got in, he died peacefully in his mother's arms. The cheeky little man slipped away quietly while nurses were trying to take his footprint and handprint. He was 2 years and 8 months old. Barely a toddler.

My big girls with their precious cousin, only a week or two before he went.

If you think things have been bad for me, please take a moment to think of my little sister. This was her second child. Now she has none. None here anyway. Ohhh... to see such grief is unbearable. I can't believe this is happening again. We still haven't buried him yet. His funeral will be this Friday.

The day he died, later on in the afternoon, I went to my friend's funeral anyway. I needed to say goodbye. I'm still kind of shocked that he's gone. So very unexpected. This week has been a double whammy, and if anything, it has just reminded me so clearly that life is too short. We blink, and are gone. Life here is a vapour.... blown away in a moment. The next heartbeat could be the last. And it's just not worth hanging on to the things that don't count.

Make things right with the people you love - people who matter. Forget about past hurts, and forgive. Even if you have every right to be angry (and many of us do!)... for eternity's sake, let it go. If you have wronged someone, make it right. Even if you never speak to them again after that, make it right and move on. Life is way to short, and you never know which breath might be your last. Are you ready?

xx

Little Man Is Four

As of a couple of days ago. Four years old. I don't really know what to say, but I felt I should say something, given that it's his birthday! Let me see....

Well... I guess I can definitely say that I didn't expect to be in this 'place' at this time. By four, I expected (or at least hoped) that he would be speaking and that he would be toilet trained. How very naive of me. Neither of those things has happened, not for lack of working at it though. They just haven't happened. Now it seems like five is just around the corner, and six and seven, and he may not be speaking then either. Sometimes, when I think about what life has brought us, I can't help imagining - just for a guilty minute or two - how different life would be if Little Man was normal.

He would dress himself in the morning, maybe with a little bit of help. I would not have to be changing his nappies anymore. He would be coming home from kinder regaling me with stories of his day - or maybe it's just girls who do that? lol :). He would tell me what his favourite food is, sing along with his favourite songs, talk about his favourite TV shows. He might roar like a dinosaur, or hoon around like a race-car driver. He wouldn't pause at the doorway for 3 minutes every time we try to leave the house. He wouldn't have to have the TV and all music switched off for every meal. He wouldn't scream at his sisters so much. (Or maybe he would, but it wouldn't be for things that don't make sense to them). I - we as a family - would have so much more freedom to live. So many things would be so different.

I don't regret my son. I do wish he wasn't autistic - it's my right to feel that way and I should not be judged for that - but I also love and adore him the way he is. I just wonder and daydream sometimes, that's all.

Here is the facebook status I posted on his birthday:

Four years ago today, I held a little man in my arms. The scent of sweet breath from a brand spanking new set of lungs, a bouncing baby boy - 4.2 kilos! My heart was stolen all over again. Who knew the amazing things he would bring into our lives. Happy birthday Little Man. Mummy loves Erik xx ♥ ♥ xx

Who knew. Who knew. I can't believe how quickly the years have gone by. I feel that I didn't have time to enjoy him when he was smaller, because I was so busy trying to adjust to the shock of his diagnosis and organise resources and help. But I also think it is just the way things are when you have more than two children. Time becomes more thinly spread among them all, and they all grow up while your attention is directed at the other ones.

Or maybe it's just that I have become stuck on a moment... waiting for his words to come. Waiting for him meet the milestones he should have met ages ago. I'm stuck there waiting for him, but he is moving on. Growing up. Without the things he is supposed to be doing. He seems to have forgotten them along the way. Or maybe decided he didn't need or want them in his life. I'm stuck in the moment waiting for him, and he has moved on without waiting for me. Could that be it I wonder?

I don't know... but I don't really think so. Because when I look at my Baby Miss, I feel the same way. She has grown so quickly, I didn't have time to enjoy her!

This is turning out to be a melancholy post. Bittersweet. But I think my life - and I daresay most others' - is filled with bittersweet. I am so happy to celebrate my sons 4th birthday. And so wistful at what might have been. Filled with joy at what is, and filled with longing for what isn't. What a mess I am.

And while I am here wallowing around, my nephew is spending his 30th night in hospital, just struggling to keep a normal heartbeat. My sister has been by his side the whole time. Touch and go. Never really good. Never really bad. Just a limbo of life. Her son might die, any day.... any moment. Or he might spend another year with us. The next seizure might be the one to take him - they are getting stronger and more resistant to medication. His heart might give out for fatigue while his brain ever-so-slowly shuts down. Or he might amazingly hang in there for many more months. Nobody knows. But she is there by his side. Living, sleeping, eating, breathing that hospital. Caring for her son.

When I think of her, I feel like I have no right to be sad for my son. But I am, and I can't help the way I feel. He is my son, and it is my life. But my son is here at home with me, and he lives. Who knows if my darling nephew will live through tonight.

In the end, all I know is that our lives are in God's hands. I don't understand why these things happen to us, but I do know this: The sun rises on the good and the evil. And it rains and storms over the righteous and the wicked both. Life happens to us all. I am just grateful that God walks with me through mine. Walks with my son when I can't get through, walks with my sister in her very private and solitary grief, and walks with my nephew in depths of spirit nobody can ever see. I'm grateful for all that I have, and hopeful for better to come. For me, and for my whole family.

xx

Ditching The Dummy

Erik has had a dummy (or 'pacifier' as it is known by some /wink) since he was born. All my children liked to suck. A lot. I chose to breastfeed my children exclusively, and was told by all the midwives to 'feed on demand' - in other words, whenever the baby cried, give them a booby. This bothered me. I did not want to become a human dummy for them, and totally disagreed with the whole 'demand feeding' theory anyway - routine is best in my opinion and experience. Anyway, I had enough pain with breastfeeding that I really only wanted to do what was required to nourish the child, and no more. I really didn't like breastfeeding at all, despite that it was all my choice. It was painful, uncomfortable, and majorly inconvenient. So when they cried for more, and knew they were fed to full, clean, dry and warm, I gave them a dummy. Sometimes, they just liked to suck. That seemed a pretty normal thing for a newborn to do, so it never bothered me much.

My first two babies were weaned off their dummies at 8 weeks or so. I decided I didn't want to keep getting up during the night to find it for them now that they had started sleeping through the night. It was only a matter of hours before they found their thumbs. I laughed. That's just my babies I guess. For the next six to seven years, those two girls and their thumbs were inseparable (har har :P). I tried a few different ways to get them to stop, but in the end, thanks to a suggestion made by a relative, Tabasco sauce did the trick. They didn't like the smell of it! So their thumbs didn't even get into their mouth to taste the burn anyway.

When my son was born, despite being much quieter - much more placid - he still liked to suck too. It took a fair bit longer for him to really get the hang of breastfeeding. But we did it. And it took a fair bit longer for him to accept and retain the dummy. He started sleeping through around the same time as the girls... though closer to 11 weeks than 8... but I went down the same track for him as the girls with taking the dummy away. It didn't work. He never found his thumb. He would just cry and cry. So I kept getting up to find it for him.... for the next 2 years or something like that. It took ages before he could find it himself and resettle himself.

When he was smaller, I was not too fussed. I recalled how difficult it was to wean the girls off their thumbs, so I reasoned that the dummy would be easier, since it isn't actually attached to him. But he never seemed to come to a place of understanding so I could go ahead with it. As he grew older though, I became more concerned. I always hated the look of bigger children with a dummy in their mouth, and was desperately not wanting to have a child like that. But Little Man, being Little Man, was not like an ordinary child. The circumstances here were different.

If you can recall a post several months ago (almost a year!) where I outlined some goals for us, it was in that post that weaning my son from the dummy was mentioned as one of those goals. Well, the time had come where I finally felt ready. After all, he was nearly four! - Well past time in my opinion. How to go about it was an issue though. He still seemed to lack a certain understanding, so I felt that involving him in the process was not going to work. I felt so bad that I couldn't prepare him for this, but cold turkey really seemed the only way. It wouldn't be good enough to just hide the dummy though. He is not stupid. I decided instead to snip off the bubble bit, and leave it on his bed as usual.

Bedtime came, and he came to bed as per his routine. Immediately he noticed his dummy was different. He picked it up slowly and, ever so quietly, started whining. Slowly, he examined his broken dummy... bottom lip trembling... eyes welling up with tears. I kid you not, at this point I was barely holding it together myself! Sobbing softly, he pulled at the little nib to try and find the bobble. He tried to put what remained of it in his mouth. He took my hand and put the dummy in it, picked up my other hand and put it on the nib. Fix it mummy!... his eyes seemed to say, pleading with me. He would not take it back from me anymore. He wouldn't touch it. It was no good. It was broken.

It occurred to me that his attachment to his dummy was maybe a little more than that of a regular kid? Maybe? The reason being, the one of Little Man's stims is to lick things. The dummy was not just a comfort sucking habit since babyhood, it was a comfort in a stimmy sense for him too.

My heart completely broke. What have I done?? I asked myself; but it was too late to go back now. If I really wanted him to be free of his dummy - and I did for various reasons - I'd have to go through with it. I held the dummy up in my hand and gently told him "It's broken darling! Oh dear, it's broken! Finished", I signed, "you can't have it anymore." He sobbed and sobbed. I was not prepared for this. Don't know why, but I just wasn't. I was prepared for a long night of no sleeping, and some crying. But not this deep - almost grief! - that he was expressing over his broken dummy.

I tried to encourage him to sleep, but he wouldn't. He couldn't. I didn't know what to do. I kissed him and tucked him in as usual, and left him. He was still crying when I shut the door, but I just couldn't leave it that way.... my heart was breaking for him. Then I had an idea. A few weeks before, I had received a delivery of some special toys I had ordered for him, for use at my SIL's wedding. One of his favourites turned out to be a small bouncy, knobby ball that lights up when you bounce it or hit it hard enough. Perfect. It was not noisy either, so it shouldn't disturb Baby Miss if he needs it during the night. I brought it in to my Little Man, where he was still sitting and staring at his broken dummy with tears in his eyes, softly crying.

I sat down beside him and put my arm around him. I kissed his temple - my favourite spot - and whispered that he was a big boy now, and didn't need the dummy anyway. I picked it up, shrugged my shoulders and remarked how it was broken again. "Oh well", I shrugged. And I threw it across the room. I thought he might get out of bed to find it, but he didn't. He seemed to understand. It was finished. Then I showed him the light ball. Immediately he took it and held it close. I helped him light it up a few times, until he got the hang of it. With a tear-stained face, finally, he started laughing. He liked the ball. I helped him lie down with the ball in hand. This would be his comfort stim at night instead of the dummy. For a long time I stayed with him, just being with him while he worked it all out.

After I left him there, he cried out a few times. He lost the ball and couldn't find it. So I had to go in there to find it for him. But eventually, all was quiet. I went in there to check on him before I went to bed for the night. He was asleep. Finally, asleep. Without his dummy.

All of this was actually done 3 weeks ago. In that time, he has not 'asked' for his dummy once. There have been some night time disturbances where he wakes up and cannot settle again. We had to remove the light bulb and door handle again, but we are now almost back to the point where we can just put them in again. Actually, light bulb is already back. Door handle is not. He doesn't even need the ball anymore - he lost it after the second night, and I couldn't find it anywhere. So he had to get used to sleeping without that. I am so proud to say he goes to bed now without a dummy, ball, or anything special apart from his blanky. And I am almost - almost - ready to throw out the spare dummy still sitting in the top of his cupboard :)

xx