Thursday, August 25, 2011

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.


Sunday, August 7, 2011

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 :)


Friday, August 5, 2011

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.


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.