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

To Post Or Not To Post

I know I have been silent for a while. And even a while before that. I have debated so many times with myself about whether I should post or not. I usually end up not. The truth is, I have been really, really, down lately. When I am this way, I don't post. I feel that I have nothing nice to say, so I don't say anything. Hence the long silence. There are some things that I am willing to share over a public forum - the general difficulties in caring for a special needs child, and so on - but sometimes, I'm just not comfortable sharing too much. I feel that people really don't want to know about my misery, so I don't share it.

That's not to say that things haven't been happening though! Things have been happening, but I haven't had the - presence of mind? - to share them. I can't put two words together that makes any sense at all, so I refrain from writing. Or I write, but it's all a nonsensical jumble spread over a sooky-la-la undertone, so I don't post it.

I even debated about posting this, but in the end, I thought it would be fairer to my readers to at least send a /wave and let them know I'm still alive. So I'm still alive, and hopefully will be able to produce something to read that is reasonably coherent soon.

xx

PS: To my fellow believers, please pray for me.... I really, really need to see God in the midst of this. I'm so foggy that I can't even see ahead to dinner-time some days.

My Little Man Is A Page Boy

Well, I finally got a hold of some photos! I am very grateful to my mother in law for these pictures. I was unable to take any of my own that day, having my hands full with everything else. It's a shame, because I was hoping to get some nice ones of my family all dressed up - we need some updated family photos, and we hardly ever dress up this much anymore!

Anyway, without further ado, here are some pics of my kiddies at their aunty's wedding a couple of weeks ago.......

For the most part, the day went well. Little Man tolerated his gorgeous suit very well given the circumstances. We had a house full of people - not all of them familiar to him - and he really doesn't like buttons at the moment. He had to wear suit pants (fine, no worries), a shirt, tie, vest and jacket. Lots of buttons. He was tired by the time he had to get dressed, so that didn't set a good premise from which to start. But he did well. I staggered the dressing process a little bit to avoid issues, and that seemed to work. The shirt was actually a little too big - the sleeves were too long. We had to fold them back to make them fit, so we did this before we put it on him. Hubby actually put the shirt on him early on in the day, and then put his pj shirt over the top to stop it from getting dirty. This helped because it allowed him to get accustomed to the shirt before we bombarded him with a whole bunch of other button- bearing gear. The next potential problem was the flower. To avoid issues, we pinned it on the lapel before putting the jacket on him. He looked at it, and inspected it a little bit, but then decided the flower was ok. All dressed up, he was so adorable to look at!

When it came to walking into the chapel and down the aisle, I couldn't have asked for a better partner. He was so sweet! Walking perfectly in time with me. I was told later on that he had a little smile on his face too. We walked to the front, and I handed him over to someone in the front row who was ready to watch him with a bag full of goodies. Throughout the ceremony, he did very well, blowing raspberries and saying his new sound as loud as he could. Nobody really minded that I could see (and if they did, I didn't care anyway). I'm pretty sure that just about everyone there was aware that the page boy was autistic. He was happy and settled, so that was what mattered most.

The ceremony was beautiful, the happy couple exchanging vows, tears happening everywhere. Then the couple were presented as the new Mr and Mrs, and everyone applauded. It threw Little Man off his groove and a tantrum started. I'm not too sure what happened at that point - I must have been busy with the bride - but when I looked up, my sister had him and had Mr Monkey on him ready for the photo session outside. He was struggling against her and protesting loudly. I was very glad to have Mr Monkey on hand at that point. I collected the baby and handed her to my husband, and then collected Little Man on the way out where we congratulated the newly weds and set about organising photography. More about the details of the day in another post, for now, here are some pictures of the girls on the day.

My two big girls handled themselves so well. I couldn't be more proud! Miss Jane just shines at times like this. She is an entertainer, and loves to be the centre of attention. Big Miss though, she has a timid nature, and was quite nervous. I think it helped that her responsibility was to hold the Baby Misses hand and walk her in with them. It kept her mind off the fact that people were staring and 'oohing' and 'ahhing' over her and her sisters.

Baby Miss was so cute and happy, and kept trying to run ahead. Big Miss had an awkward time keeping her baby sister in time with them. But she did a great job. When they got to where we were, she looked at me with an expression of slight panic in her eyes - What do I do now?. We had rehearsed, but I think the actual event is always a little different in reality. I quietly indicated that she can now pass her baby sister to Nana, who was waiting there, and then come and stand in front of us (the bridesmaids). Throughout the ceremony, they were perfectly behaved. No complaining, no distractions. They stood so sweetly and attentively, perfect little flower girls. My heart was almost bursting with pride.

Baby Miss grew a little restless through the ceremony, but her brother's bag of toys also had some surprises in it for her, and that kept her quiet enough.

I can't say it was easy - it was quite a challenge having both parents and all children in the bridal party. But with a little help, we did it. Admittedly, I find it quite disconcerting when I don't know where my baby is or who has her, but at the same time, I am thankful for the extra hands nearby to help when needed, and ultimately, I knew she was safe.



xx

Where Am I?

Still here, but busy! My SIL is getting married in little more than a week, so we have been rather preoccupied with wedding preparations. Especially when you consider the whole family is part of the wedding party. That's right! Your's truly as Matron of Honour, hubby as Best Man (isn't that sweet!), all three girls are Flower Girls, and my little man is indeed the Page Boy! ... won't that be interesting, hahaha! We are planning on walking him in with me, I pass him on to my sister who will be equipped with a bunch of stimmy toys, hubby and I pick him up on the walk out of the chapel, family photos are first up, then I run him and the Baby Miss home where the baby sitter is waiting to take over dinner/pjs/bed routine, and I dash back just in time to be announced at the reception. All of this in platform stiletto heels and a corsetted strapless dress! Awesome plan, huh? I will let you know how that pans out, hehe.

So yes, things have been a little flat out. Between dress alterations, finding shoes for all, stockings for the girls, hens night planning, making appointments for the big day, jewelry, a shirt and tie for my boy and planning a schedule for the morning of the wedding.... it all takes it out of you. I still have to get the house tidy and organised to accommodate everyone getting ready here on the day - but I have booked a cleaner to take some of the pressure off.

In the midst of it all, Baby Miss has a couple of new words, and has created some beautiful artwork pieces with texta on the kitchen cupboards and entertainment unit - gorgeous. I love it 'cause its so NORMAL!! Little Man has a new mini trampoline which he just loves, and a new sound - "weeehhh-yah"! I discovered half eaten crackers, an empty snail shell and a bucket of homemade paint hidden under the bed in my big girls' room. Hubby and I are cruising along at 100 miles an hour, but we are all still here and all good. Hope to get back into a rhythm once the happy couple are off on their honeymoon.

Back soon :)


xx

Pineapple & Cream Sponge

I thought we were about due for some more cake. But I haven't been baking anything special lately, so here is one I should have posted ages ago, but never seemed to have gotten around to it.

This was for my big sisters' birthday. She had been craving a sponge cake with fresh cream and pineapple. Not easy coming up with a funky and modern design when it comes to decorating with fresh cream and fruit! I wanted something different to the traditional swirls etc. This is what I came up with. The middle is also filled with pineapple and cream, and the succulent flower on top is from my garden. First time I've used fresh flowers on a cake! I really liked the effect of it... I think it added to the "pineapple" theme a little bit. You know... spiky green leaves and such...

I have to say, this cake was delish :)




xx

Random Ramblings

We are not having a good day.
We have had lots of meltdowns today.
My son has not eaten his lunch.
He will not eat his dinner.
Dinner is gluten free spaghetti, with the usual sauce.
It is the first time I have offered gluten free spaghetti to him.
He will not eat it.
I don't know why he will not eat it... it looks almost identical to his usual spaghetti.
He should be starving, but he will not even taste it.
He has not brought me any food PECS and I think that is strange.
I finally offered him fried rice and he ate that.
I am thinking a gluten free diet is not going to work, even though we've just started.
I still can't understand why he didn't want the spaghetti...if he picked a difference in it just by looking, he is one amazing kid.
I have wanted to sit down and cry at least twice today, but didn't.
The boy wee'd on the carpet again.
I am sick of the house smelling like wee.
Baby miss vomited a little bit - on me.
I had to help both big girls with their projects tonight... should have enjoyed it, but it was really just another chore.
They were both up way past their bedtime to do it, because I had no other time I could spare.
I feel guilty over everything.
I still want to cry.
I miss the warm weather.
I have to go shoe shopping tomorrow.
I should be looking forward to it, but I don't have the energy to enjoy it.
I managed to have a 1 hour nap this afternoon.
I felt awful trying to get up after it, but would not have been able to get through the rest of the day without it.
No matter how much I soak and wash my boys' black socks, they still smell like wee.
I cannot believe how bad today was with meltdowns, patterns and stimming.
I am wondering what I have done wrong.... again.
The kids are all in bed now, and I am glad the house is quiet.
I feel guilty over putting the boy to bed when he was still crying.
I went in later and kissed and hugged him.
He was and still is perfectly fine.
I still feel guilty though.
I hate how I dream and plan to get into the housework with a smile and lots of energy, and then end up dragging my feet and wondering how I'm going to get through the next hour instead.
I hope tomorrow will be better.
I think it will be.
My big girls are so proud of their projects and so appreciative of my attention.
I feel bad that I can't do more.
I feel happy that they are so pleased with their efforts.
I am proud of them.
Baby miss has been using PECS, and it's really, really cute.
She is also pointing at things and trying to say words.
She is a balm for my soul.
I look forward to blogging about happier times.
I know they will come sooner or later.
I thank you for reading :)



xx