Retrospect: The Early Days

Lately, I have been thinking about the time when our son's problems were first brought to our attention. It wasn't that long ago in the scheme of things, but it seems like ages. I realised that although I have been blogging since before his diagnosis, I have never really talked about those very first weeks and months in detail. I suppose I was taken with things that were more attention-demanding at the time. Things like appointments and meetings and paperwork and such. It has been nearly 2 years since the nurse first told me he was not making his milestones, but less than 1 year since his formal diagnosis. It is my intention to post more about those early days in retrospect. We usually see things alot clearer in retrospect. It is my hope that these posts might encourage, comfort and reassure anyone who finds themselves in the same 'early days' place. I also hope that it might enlighten people who are otherwise unaware of what many parents go through when they find out their precious child is not..... normal.

A brief disclaimer here; I realise that the use of the word 'normal' can rile some people up quite considerably. It is not my intention to upset anyone. Like everyone, I have an opinion on this, and will probably blog a more specific post about it later on. Until then, I hope my use of the word will be accepted, or at the very least, tolerated by those who might otherwise be averse to its use.

Stay tuned for the retrospect posts.


xx

The Microwave

He has discovered it. Unlike the light switches, this discovery is a real pain. He started by just opening and shutting the microwave door... very pleased with himself for the new discovery. Then he progressed to investigating the inside of it. Soon, he was fiddling with the dials on the outside and turning it off and on.

This is a hard one. Unfortunately, I can't just let him play with it until his curiosity is sated. Rather than stand there and fight it out every time, I have resorted to just taking the plate out and unplugging it from the wall. He loses interest in it pretty quickly that way. The problem is, when I need to use it, he is there in a heartbeat, crying and getting all upset because he wants to play with it. Then, I do have to stand guard, blocking his way and continuously saying 'No. Don't touch please'. Driving me bonkers!... Reheating stuff is ok, but when I have to defrost things from the freezer, it's a real pain.

At the same time, of course, I am happy that he is exploring and has discovered something new. I am beginning to realise this is a hallmark of being a mother to an autistic child. Frustration and joy all at the same time. Is it any wonder I'm crackers?? Hahaha!



xx

Black & White Cake With Pink Lilies

I had the privilege of making my SIL's engagement cake last week. My SIL is not just my SIL, she is my best friend - as close as one of my own sisters. We laugh, cry, and stress out together, and she loves my children as her own - which means alot to me. The man she is engaged to is just fantastic. Top guy, a great addition to the family - and taller than her!! (She's a pretty tall girl!)

Anyway, she asked for a cake with black, white and pink colours, lilies, and a ribbon that draped over the cake. Chocolate cake with cookies & cream filling, and the rest was up to me. So this was what I came up with!

I made the lilies from sugar paste.... it was the first time I'd made anything like them, and I wasn't particularly happy about how they turned out. But a bunch of compliments soon brought my satisfaction levels up a bit further.

It was the first time I'd tried any stringwork piping, so I was very nervous. The lines are most definitely not perfectly spaced out or straightly done, but the overall effect was still beautiful. So I was happy with it.

Had to include an inside shot.... I love looking at the yummy insides of cakes, and thought you might like it too :P - despite the fact that it's messy and not all set up like a food stylist!

In retrospect, I would have made the top tier 1 inch smaller; I think it was a little bit too big and didn't quite have the desired effect. And I accidentally cut the ribbon about 1 cm shorter than what I wanted!

Still, I was very pleased with the outcome overall, and had a heap of fun with this cake. I got to use some new techniques and it turned out delicious.



xx

Party

Before I got married and had children, going to a party meant something quite different to what it means now. It meant, a chance to dress up - maybe even buy a new dress or shoes for the occasion and a little evening bag to match. It meant 2 hours in the bathroom getting myself ready (ridiculous, I know! - but I could do it if I wanted to!). It meant yummy food and drinks. It meant dancing - if I could convince my parents to allow me to. It meant being out late, going home to look after only myself, and sleeping in in the morning as long as I wanted to. It was a chance to meet people and have fun. The consequences..... well, there were none that really mattered back then.

Now, a party still means a chance to dress up. If I have time to find a new dress that would be nice, otherwise I have to make do with what I've got. Finding a dress is a pain, because nothing looks good anymore. My shoes have to be practical, so no more killer heels. Clothes need to be practical, so nothing strapless (in case kids pull it down) and nothing too short (don't wanna show the world my hoo-haa when I have to bend to attend to kids now, do I?). It means a baby bag packed with food, spare nappies, wipes, bottle of milk, water, etc., a blanky for the little man and a blanky for the baby miss. I need to get four children ready to go as well as myself, so only 30 minutes in the bathroom if I'm lucky.

It means arranging for baby sitting, so we need to leave extra early to drop off the little one. If we choose to bring him, it means attending to my son on arrival, instead of mingling with other guests. It means sitting in one spot (by the front door) to watch my little man because he refuses to go passed the foyer into the house. It means having mini heart attacks every time that front door opens to allow guests in , in case my little man escapes. If I choose to have him stay at grandma's while the rest of us are out, it means I think about whether grandma is coping the whole night, and wondering whether he is eating/sleeping/cooperating with her. It means you dread the phone-call that inevitably comes - he won't eat, and we can't get him to sleep....What do you want us to do with him?

It means pestering your partner to go home when they don't want to (and deep down, neither do I). It means going home early to collect the little ones, (come on, seriously, how late do you expect grandma to wait up for us to come and get them, after all?). It means helping two tired and grumpy older children get ready for bed, and then settling the two babies to bed. I have to wait for them to fall asleep before I can go to bed - luckily that doesn't take long. It means I'm still up during the night to check on them, and there is definitely no sleeping in in the morning. Children are tired and grumpy all the next day and so am I.

Parties are not fun anymore. I don't dance, I don't even know what to do with myself half the time..... I'm not used to being out for fun. I feel unattractive and boring (despite the many compliments I may actually get - I know it's stupid, but that's how I feel). I spend the night worrying about how I look, and if my children are ok, and if the people minding my children are ok, and if I will cause an argument if I tell the hubby we need to go home. I should be able to feel great afterwards, but all I usually want to do is cry.

Sometimes, I think I should just give up on life - not life in general, but life as in, fun - laughter - love - friendships - life. Once I give out what life is mine for my family, there is nothing left for me to enjoy. I wonder what is the point of trying when things end up like they do.


.....I realise this is a bitter post and maybe I should apologise, but honestly, this is a glimpse into a deeper me, at times when I am not so positive. You are lucky to be seeing it. I don't regret my children or my family - I love them to death. But that doesn't mean I am happy and positive and fulfilled all the time. The rewards of motherhood are years in coming, and those years haven't come for me yet. I'm so afraid that when they do, I will be too old and ugly to enjoy my life. I feel like the 'me' in me is wasting away. I have become my family and my family is now me. The question I always end up asking myself at times like this is; who am I when I stand alone?



xx

Breaking Patterns

Sometimes my sons patterns are helpful. Sometimes they are not. One thing I have been told by health workers consistently along this journey is that I just have to break them.

.... anyone ever tried to break a habit? ... How about an autistic kid's pattern?

Yeah. Not as easy as it sounds. My son is typically stubborn and yeah, pretty obsessive over certain patterns. The repetition and familiarity of patterns make him feel secure and in control of his life. So naturally, he stresses over changes. Now, I don't want to brain dump on you all here, so I'll try to break this down into more easily digestible parts - patterns with an autistic kid encompasses more than you realise if you haven't experienced it before!

Break it or just work with him?
The thing is, it's all too easy to just go along with them sometimes. If I allow it, ultimately we will achieve what I'm trying to get him to do alot faster. It might take longer for him to do something than it takes my girls, but in the end, it's faster than having a full blown meltdown to deal with - right? But in the long run, this isn't helpful. In fact it's just setting us both (me and my boy) up for alot more heartache further down the track - imagine if he was still having to stand up on the couch to put his shoes on at the age of 12! I have to break them.

This can be a depressing thought if you let it get to you!! I mean, when I think about it, this is going to be a part of my daily life forever, it seems. At least until he is grown up anyway. And even then, who's to say just how independently functional he will be?

I can't afford to think like that. As with many parents of children with a disability, I need to take one day (and sometimes, one hour), at a time. If I decide to tackle a pattern, then I am committed to that battle, and the outcome, ultimately, will be beneficial for the whole family, not just my son.

Anything can become a pattern! Anything!
I have to be very careful what actions, activities, routes, etc. I take with my boy, because any of those, if repeated more than once, can become a pattern if the fancy takes him. Especially if done consecutively. Are you frustrated? Welcome to my life! Haha! If I don't mind a particular thing becoming a pattern, that's fine. But if not, then I've just created trouble for myself. I need to be constantly vigilant to the activities of our day/week to make sure I don't create monsters that will come back to bother me later on. This gets a bit brain draining. I like my habits too you know, but the difference is, I can deal with inconsistencies, whereas my son cannot.

For instance, parking in the same area at the shops every time we go - habit for me because I like that particular entrance or parking lot. But I can deal with parking somewhere else, especially if the shop I want is closer to that entrance. My son, on the other hand, would just about have a cow if we did that (and yes, it has happened - not literally, but you get my drift :P). So to prevent problems, I try to park in a different area every time I take him to the shops with me. The aim here would be to teach him that it's ok to walk in through a different way.

I can and must choose my battles.
The good news is, I can choose my battles. And if I value my sanity, I must. I am in this for the long run. I cannot go pushing myself to breaking point for the sake of a pattern - there are other members in this family and I have to be mindful of their needs too. If I go to pieces, who is going to pick up my load and carry it?

How I choose my battles.
There are a few factors to consider when I choose what patterns to break and when.

1. Time. Is there enough time to allow for dealing with the imminent meltdown?

2. Location. Is this place appropriate/acceptable? Are the people here going to be disrupted too much? - it's one thing to have to deal with unavoidable meltdowns in public, but I don't want to go out of my way to disturb people either. I need to be considerate of those around us, for their sake and ours and in light of that, I try to choose the timing to avoid being in places that I'd rather not deal with meltdowns at.

3. My mental/emotional capacity. This is a pretty important one actually. The worst thing to do is to start trying to break a pattern, only to get halfway through and have an emotional crack-up myself. When we start, it is imperative that I win the battle. It is pointless to start and then give in to his way because I can't cope. Don't get me wrong, there are times when I must concede the point and allow my boy to do what he needs to do, but if this happens too often, all he will learn is that everything in life is a fight. I need to be in a strong emotional frame of mind before I tackle any pattern.

4. His mental/emotional capacity. The same holds true for my boy. If he is sick, tired, overstimulated, nervous, anxious, already adjusting to some other changes, or even slightly off, I won't even try. To do so would only place more stress upon him and usually just make his 'autistic symptoms' worse. The last thing I want to do is introduce more anxiety to his life, so I need to consider his emotional capacity for change. Breaking patterns are a really big deal for him.

5. Family environment. This is sort of an extension of the last point. If there are other changes going on in our family at the time, I will usually wait till they have settled. It is difficult for him to adapt to change, so one thing at a time makes life easier for him and has a better success rate all 'round.

On the other hand, some changes can facilitate pattern breaking. Holidays are a great time to break old patterns and establish new ones. New places mean that there are no patterns set as yet, and so there are plenty of fresh 'untainted' opportunities to introduce new things. And if we're diligent and luck is on our side, we can often bring the new patterns home with us.

A good example of this is where my boy graduated from high chair to table for meals. Our last holiday place didn't provide a highchair for him, so we used a booster seat at the table with the family. When he came home, he climbed up into a chair and decided to take his meals there with the girls. Naturally I encouraged this, and he hasn't been back in the high chair since!!

How long does it take to break a pattern/establish a new one?
On average, it takes about 4 days for my son to stop having meltdowns and fighting me. From about day 5 to day 8, he doesn't fight me, but he does protest passively. He will flop, drag his feet, not respond and generally be a big pain, LOL. But at least he isn't kicking, screaming and pushing at me. It takes about 2 weeks for him to fully embrace the change. So from about day 8 to the end of the week, he is quiet and cooperative, but not really pleased. However, once the new pattern is established, he works with it and comes to look forward to the familiarity of it, just like the one before.

A warning though!! - All of this is only if I am consistent in implementing the change. If I cave and regress to the old pattern just once in the whole process, we are back to square one! This is why, once we are committed, we must see it through.

On the upside....
Come on, everyone has a bedtime pattern don't they? Just because my little man's pattern is a bit quirkier than most people's, doesn't mean we have to break it! Patterns can also make life alot easier. I know what to expect of him, he knows what to expect, and generally the whole family knows what to expect.

We've broken a few patterns now, some have been very successful, others I wasn't so diligent with and so they have regressed. Putting shoes on, getting into the car and moving rooms in daycare are some of the successful ones. Walking the same route into grandma's house is one that is not so great, and he is now generalising part of that pattern to other things - specifically, that he must begin his walk from the car to wherever by standing right in the gutter in the street. Yah.... you can see how awesome that one is. LOL. Part of this whole deal is watching for patterns that are emerging too, and sometimes they can surface before I've realised what is going on. Fun stuff.

Long post...... thanks for reading!



xx

So....How's It Going?!

Well, the second night of big bed transition, my boy taught me the meaning of "sleep-deprived-autistic-mother". He went to bed alright, and he actually fell asleep in much shorter time than the first night - which was great! When I went in to check on him, this is how he had fallen asleep........

Too cute! Lights were on and everything, but he was all asleep.

Anyway, it was later on in the night that we had some settling issues. I had gone to bed early, for a change, while hubby stayed up to work some more. I don't know how long I had been asleep when my man came into the room to go to bed himself. But when he did come in, he woke me up to tell me that our son had woken up and was rattling his gate. Hubby had tried to settle him, but it didn't work. So up I get to do my motherly duty, and into his room I go to try and settle my son.

Forcing him won't work. It never works. So I wasn't about to do that. I started by reminding him that it was time for sleeping, and that he needed to be in bed. I stabilised the gate again - because he was about to escape it, haha! - and lay down in his bed with him, hoping he would get the message.

He wouldn't stay there. I tried three or four times to bring him back into bed, but he would not have it. So I decided to catch what sleep I could, while he played and decided to return to bed in his own time.

So, he played, and played, and played. Rattled his gate and played some more. Walked around the room. Climbed on the bed and off again, and generally did anything but try to sleep. Periodically, I would get up and try to direct him back to bed, but it never worked. This went on for what felt like quite some time. When he started turning the lights on again, I decided enough was enough. I put him to bed in his cot, put the side up and said goodnight. I went back to sleep in his bed while I waited for him to fall asleep again- which he did in a short time! Then I got up and returned him to his big bed, and went back to mine.

It was about 3am by this stage, and I don't know exactly how many hours I had been up with him, but it felt like 3 or 4.

The next night, it took even less time for him to fall asleep, and he slept soundly till 5am. I was woken to the sound of pitter-patter footsteps down the hallway. Before I opened my eyes I knew who it was by the 'oooff oooff' sounds he was saying. He pushed the covers off me and tried to pull me out of bed. Taking my hand, he led me to the lounge room and wanted to play there, but again, I put him back to bed in his cot this time - Lord knows I just needed those last couple of hours of sleep! He settled well enough, and we got him up in the morning.

Overall, he seems to know now, that his big boy bed is his new sleeping place, despite that I have returned him to the cot a few times. He goes there for rest breaks during the day - which is really sweet to see - and when I say that it's bedtime, he goes to the right place. I am happy with how the adjustment is going. The only thing that is stressing me out now, is resettling him into his big bed when he does wake before time. But I'm confident that will come eventually. Hopefully, it won't be too long before he is truly fully settled into his big boy bed.

Next stop: toilet training!





xx

The Big Bed

The big bed, all set up and ready to go!

Last night we moved the little man to his big boy bed. I've been itching to do this for quite a while, but we were waiting on some safety gates to go through approval for funding/ delivery/ etc. Took ages. Very annoying. But the first one arrived yesterday with our EI worker, God bless her. After all that effort though, it turns out that the one I ordered needs to be screwed into the walls - something I didn't realise when I chose it. So we couldn't use it after all. Now I need to seek approval from our landlord to attach it to the walls. I believe that if it is required for disability purposes, they cannot say no, but they may charge us for plastering the holes and repainting the entire wall when we vacate. I really hope they don't, but I guess that's a risk we need to take.

Anyway, back to the subject at hand!!

I set up his big bed with cute new dinosaur linens, and placed two pillows by the edge near him in case he fell out during the night. We couldn't use the new safety gate, so hubby dismantled part of the playpen and wedged it into the doorway so the boy couldn't get out. One of my primary concerns is him waking in the night and roaming the house unsupervised, which is why we need the safety gates. We didn't have this problem when the boy was in his cot, because he was never interested in climbing out if I wasn't there (part of his pattern).

This is what we have upgraded from.

So anyway, I took his blanky and his dummy from the cot and put them in his new bed to help him with the transition. I put the little man into his big bed for sleep. He didn't protest and didn't seem upset. But he did take a loooooooong time to settle. I could hear the doorknob being fiddled with (he hasn't worked out how to open them yet, haha!), and the lights flicking on and off. After some time, things went quiet so I stuck my head in to have a peek. I expected him to have fallen asleep already. He didn't have his afternoon nap, you see, so he should have been exhausted. Instead I find him lying awake in his bed with the light on. Nooo! Mentally kicking myself for disturbing him, I resettled him and left. Eventually - like 3 hours later - he did fall asleep.

Fell asleep in the corner with his blanky and the lights on.

At about 6am, hubby woke me to inform me that the little man was up. My hubby wakes early most mornings and is out the door before we are even up. When he had come out to the kitchen, he found the little man standing at the barrier with the lights on, hissing to himself (he likes to make 'fffffffff' and 'sssssshhhhh' and 'sssssssss' sounds. I call it hissing LOL). We didn't know how long he had been awake for. At this point, I put him back into his cot with his blanky and dummy and closed the door again. I didn't want to resort to that, but with hubby up and about, I seriously doubted he would go back to sleep with the door open and free access around the room.

So I fully expected the little man to be extremely tired and prone to the grumps today, because of his late night and early morning. But so far, he has been more than pleasant! I've just put him down into his big bed for a (hopefully) short nap to help him get through the day, but I have no idea if he will actually sleep or not. This new bed will take some getting used to, but if we want to make this transition, the distinction needs to be as clear and as consistent as possible. So I might have to put up with a tired grumpy boy for a few days while the change settles in. But honestly, he has, so far, handled himself very well. I am so blessed.



xx

What A Chocolate Button Can Do

Like most autistic kids - and probably alot of toddlers in general - my sons eating preferences tend to be very narrow. He does not like vegetables or meat. The only way I can get him to eat any of those are if I chop them into tiny, almost mashed pieces, and mix them with rice. Or I can hide them in a pasta sauce - red only. He will reluctantly eat sliced sausage, fish fingers and chicken nuggets too. And of course, chips.

Anyway, due to his relative fussiness, he had very low blood iron levels. Low enough that his red blood cells had begun changing shape, and we had to put him on an iron supplement. Getting him to take his 'medicine' was a nightmare to begin with. After trying many gentle ways of coaxing, bribing, explaining, etc, he finally had to be held down and the syringe forced between his teeth to get the medicine in. Fortunately for us, he didn't spit it out once it was in his mouth, he just swallowed whatever was there.

As you can imagine, this was not only distressing for him, but for me too. I had to manage him by myself when hubby was at work, and it was so difficult. I hated it. I would almost be in tears myself when it was time for his medicine. I got so fed up with the trauma of it all that I became determined to find a way to make 'medicine' more pleasant for him. (After all, there will be times when antibiotics or other medicines are needed too, so the easier the process, the better! There's nothing worse than trying to force an already sick and grumpy kid to take his medicine when he doesn't want to!)

The solution was so simple, I can't believe it didn't occur to me sooner. I began to reward him with a chocolate button immediately after he'd taken his medicine. It stopped the tears and helped him forget the unpleasant part of the experience. He soon began to look for his chocolate button when he'd taken his dose, and after a few days, he stopped fighting me when it was time for medicine. Now, when I say 'time for medicine!' he runs to the couch and lays himself down all nice and ready. No trouble and no trauma! He opens his mouth willingly and takes his 'red medicine' easily. Then he looks for his chocolate button :) This is great! But when he has to take a different kind of medicine, it's still a bit of an issue. He knows it's not the 'red' one, so he doesn't want it. Regardless of that fact though, it has become easier to administer any other medicines to him because of that chocolate button.





I still didn't like having to give him the supplement. It made him poop alot. Three to four times a day sometimes! The supplement contained a mild laxative to counter the effects of iron in the system - anyone who has ever taken an iron supplement will know that iron causes constipation! But I think the laxative worked too well for my boy. I often wondered whether he was getting much nutrition at all with the amount that just went through him.

In the first few months, we were vigilant with his supplement, but as I made some adjustments to his diet we began to ease off a bit. In recent weeks, he has only had a dose when his diet for the week didn't include any red meat at all. (Yes, that does happen sometimes!)

So, all of that background to give you this little bit of good news: His last blood test showed his iron levels were excellent and the supplement is definitely no longer needed. Wonderful! It means his diet can now carry the recommended amount of iron in it, and I can now shift my focus to other areas - like improving his calcium and overcoming his sensory issues with meat and vegetables in general.

When the paedie announced that his iron levels were great, I just couldn't wipe the smile off my face. It was there all day, I was so pleased. Even hubby came home to say how happy he was about it too. These small victories just mean so much. They are what keep us going and encourage us to believe that change is happening, even though we might not see it right now.

PS: If you want to know what I did to adjust his diet, all I did was separate the calcium intake from iron, and add in more vitamin C when he did have iron. For example, omit the cheese on his spaghetti bolognaise and give him a chopped orange afterwards. Vitamin C enhances iron absorption while calcium inhibits it. Unfortunately, that meant that some of his calcium had to be dropped from his diet as there was limited opportunities to fit it in, but I don't have to worry about that any more. Now that his iron levels are acceptable, I can reintroduce the extra calcium anytime, and whatever iron he gets will be enough to carry through :).





xx