Hotter.

How can it be so hot and when is it going to end? The past 4 days have been unbearable (and the past three nights much worse)! I am sleep deprived and cranky, and finding it really difficult to cope with Jasper at the moment.

We slept in the lounge again last night and he again had a reasonable sleep but nowhere near the usual amount he seems to need. This morning I took him to Hungry Jacks for a play (they have the best air conditioning in Bendigo)!! I stupidly thought I might get 5 minutes peace - everytime another child came into the play area Jasper carried on and would cling to me, whinging, until they left. I tried to reassure him calmly that it was okay, the other children were just playing but he was getting completely worked up about it. Usually I am able to talk him around, he just needs that initial reassurance, but not this time!

This afternoon he re-discovered his Iggle Piggle dvd and it looked like I might get a little break - until I mentioned his Ninky Nonk (and then could only find one of the three pieces) but by then it was too late. He wanted his Ninky Nonk and he wanted it now. I searched his room for the other two pieces but couldn't find them. Meltdown......not what he wanted to hear!

He took himself off to his room, screaming for his Ninky Nonk and refused to come out. His room is like an oven and I don't want him in there while it is so hot - but he did manage to find one more of the pieces.

I asked him 'where did you find it', 'show me where it was' and rephrased it 20 different ways but he had no idea what I was saying (has never been great at pointing things out and showing where things are, if asked).

He eventually came out and resumed watching his dvd - minus one third of his Ninky Nonk. The crisis over as quickly as it began. Laying on the floor with 8 dummies lined up beside him with precision!

He is so hot and he flatly refuses to strip down to a nappy. He dislikes me wiping him over with a cool, wet washer and yet he is happy to sit in a near cold bath (and wading pool). He gets anxious before getting in, worried that the water is too hot, it takes a lot of coaxing to get him to dip his toe in to test the temperature. He is like that with food as well - very anxious if it feels or looks the slightest bit too warm.

Just back tracking - while we were playing at Hungry Jacks this morning, he walked up beside me and started licking my arm, Licking seems to be his latest thing at the moment.

I was hoping there might have been a suitable childrens movie showing at the cinema this afternoon so we could escape the heat there - unfortunately not. Only an hour and a bit till Garth gets home from work so I need to hang on till then. I feel like there is no reprieve from this and it really gets me down.

Hot.

Jasper has been with his grandparents for a couple of hours this morning while I had a few appointments, despite the heat we are both in a happy mood (I'm being strict with myself...think happy thoughts...think happy thoughts)!!!

Last night, after Garth got home from work, we took Jasper to the pool, only to be told it was due to close in 10 minutes! So after hyping it up to Jasper he was not a happy chap! As best we could, we tried to explain to him it was closed and we would come back tomorrow (today). We have endured a night of reminders every 10 minutes AND he was still asking to go to the pool when he woke up! So there is no getting out of it - we are heading off shortly!

Another very hot night last night, Jasper and I slept in the loungeroom with the air conditioner on and he had a reasonable sleep - fell asleep about 11pm and slept like a log until 8.30 this morning. Might try this again tonight. His room is incredibly hot (despite being on the south side of the house) and he doesn't seem to like having a fan blowing on him AND he insists on wearing pj top and bottoms (he would be so much cooler in just a nappy).

Nothing.

"And the floodgates open but nothing comes out"

(Wrong Girl - Missy Higgins)



I just feel like crying but it is too hot - I can't shake this horrible 'hopeless' feeling.

None of us had much sleep last night, Jasper was up (despite Melatonin) till about 11pm, but it was so hot, who could blame him. He spent an hour in his cot then wanted to sleep with me. At about 2am I put him in the car and we went for a drive into town, to try and cool down (the air con in the car works better than our silly, useless air con in the living area).

Got home about 3am and Jasper wanted to play, then spent the next hour bed-hopping until he eventually fell asleep in with me.

I felt mean sending him to creche today after such a bad night but he will be heaps cooler there than here at home, and hopefully he has a nice big nap while he is there. I have taken refuge at the library all morning and come home armed with some books on autism - I will add them to my reading list (see 'read me').

I used the photo of creche this morning to explain where we were going(once he was safely strapped in the car)! He made a feeble attempt at protest but he was fine (although he is still crying when I leave).

What?

To add another thing to the list of annoying things Jasper does at the moment.....whenever you say something to him (such as 'It's going to be a hot day today' for example) he says 'what'. In the beginning I would repeat the same sentence and he would continue replying 'what'. This could go on 6 or 7 times in a row and in the end I didn't think it was because he couldn't hear what I said, but rather, needed the time to process it maybe?

I have started to not repeat what I have said but allow him time to process it and amazingly 9 times out of ten he will make a comment (so he has in fact heard it in the first place and I don't have to go crazy repeating things over and over). However, usually his reply is just to repeat what I have already said ('It's a hot day isn't it mum'). This is pretty much the extent of our conversations at the moment and sometimes I find it really sad. I enjoy talking to him but it just becomes so frustrating when the conversation is so stilted with him just repeating back to me what I have already said. It is moments like this when the autism is really obvious to me (at other times you can almost pretend it's not there).

I remember commenting to someone about Jordy, when he was going through his assessment for Aspergers, that having a conversation with Jordy is a very 'lonely' exercise, that you are both talking but not really connecting - hard to explain. Similar with Jasper though, he is there but I feel like he is not really there, or like we are speaking in different languages. It is times like that I really miss what might have been (or wonder how Jasper might have been in a perfect world).

On another note, I used the photos Andrea printed out to show Jasper this morning we were going to creche (and then I was going to the supermarket etc). He went off happily, no tears, no anxiety (well, maybe the smallest touch of anxiety but certainly no tears and protests) but he did get upset when I went to leave and he realised he was staying and I was going to the supermarket without him. I think I confused him. I am going to be really brave tomorrow and show him 'only' the photo of creche, before we leave, to explain what we are doing. Usually he copes a lot better on Thursday after having been there the day before.

I can hear him outside harrassing his father! Better go and rescue him!

Give Me Strength!

I was not sure what to call this post but as soon as I sat down at the computer, Jasper started up his demands ("I want a cup of milk" and "I want a biscuit") and I sighed 'give me strength' under my breath, as I so often do! Easy!

It is so hot here today and we are all tired and cranky, not the least Jasper. We had Occupational Therapy first thing this morning (and he went really well) then did a few jobs in town, but his happy, compliant attitude started going downhill around midday.....(time to go home)......and has been pretty ordinary since then.

He refuses to have a rest or sleep (a nanna nap makes perfectly good sense to me on a day like today) although he did lie on the bed with me, fan blowing full pelt, playing with his cars for maybe half an hour. Then it was back to the whinging and demanding....."I want a cup of milk"....."I want a biscuit"........(if you're asking me "I want to run away and never come back"). The frustrating thing is, when he is demanding things like this all day, non-stop, more often than not, once he has it he doesn't want it.

I'm really trying to stop the all day snacking for this reason and after lunch I fill up his drink bottle with cool water and put a few rice crackers in a bowl, on his little table, and each time he asks for food or milk I direct him there (and usually, if I am lucky, after being shown the water bottle and biscuits a few times he gives up asking for anything else). It's no fun when mum is not playing the game!

While at OT, Andrea (Early Intervention) gave me some picture cards to start using (we gave her a disc of photos, mostly places we go) and I am hoping once we really get into using them things will get easier. At the moment the greatest need is photos of the family and a matching photo of where each person is at any given time and also photos of places we are about to go to. They are also very supportive and keen at creche to start using picture cards although in terms of his transitions from one activity to another - or play to meal time, meal time to rest time etc - he apparently copes really well.

Anyway, for the moment he is engrossed in 'abc kids' on tv so I will enjoy the peace while it lasts (which past experience tells me won't be long at all) and later in the afternoon/early evening he can have a splash outside in his wading pool, which he really, really enjoys. I might even join him at this rate.

Breathe.

"Tell me how I'm supposed to breathe with no air?
Can't live, can't breathe with no air
It's how I feel whenever you ain't there
There's no air, no air"

(No Air - Fauntleroy, Griggs, Mason, Thomas, Russell).


It has been a tough week, tougher than normal. It is not related to Jasper and his autism, rather it is a 'family issue', but it is bound to have some effect on him due to his need for calm and routine.

First drama was Zac (17) throwing a party - complete with 4 bands and copious amounts of alcohol - while we were away on holidays, a holiday he did not wish to come on. Stupidly I allowed him to stay home (what was I thinking?) with ONE very simple rule.........'No one is to come to the house while we are not home'. The result at this stage is that Zac has decided he is going to leave home. How this directly relates to Jasper is that, as it is, he constantly asks daily where each family member is (a large number of times) and gets upset when he has not seen one of us for any length of time - particularly Brayden (20) who no longer lives at home.

This leads nicely to the second drama - Brayden came home for a few nights only to break the devastating news to me that he is travelling to Canada for the next 12 months, maybe more. The only way I can explain how I feel about this is to liken it to not being able to breathe - I have literally stopped breathing, forgotten how. He has my blessing and I know it will be a great experience for him (he has such wanderlust) but how am I going to live without him, he is going to be so far away, already I feel the pain of missing him and he hasn't gone anywhere. As for how Jasper is going to cope - he adores Brayden and is always so excited when he comes home. He has real trouble comprehending where Brayden is as he only ever sees us putting him on the train, therefore he thinks (I think) that Brayden lives on the train. We tell him "Brayden has gone to Melbourne on the train" (or "Brayden is at work in Melbourne") but for this reason we can not go anywhere near the train station because Jasper thinks we are going to see Brayden - so I avoid driving past it at all costs.

When we dropped Brayden at the station on Friday Jasper sobbed all the way home "Where's Brayden" "I want to see Brayden". He doesn't understand and it causes so much angst - how on earth is he going to comprehend Brayden is in another country. What if he forgets him?

During the week we had our first session of Early Intervention for the year. Apparently the funding has been cut so instead of a session every fortnight he will only have one session a month (as well as only one session of speech therapy). On the up side, now that we have his official diagnosis we can call Autism Victoria to apply for funding of our own. Not sure of the fine details of this until I speak to them (I will post about this at a later stage).

We also had an appointment with Family Support but I don't feel we need (at this stage) the service they offer - I was expecting support in the way of respite, which is my greatest need at the moment. This is provided by a different organisation but I decided that rather than looking into that any further I would try to get him an extra day at creche. That way things are familiar and we are not introducing 'another' thing into his life to learn to cope with. He will now attend creche on Monday mornings (for respite for me) as well as his regular Wednesday/Thursday while I am at work.

Alone

"Fly with me, I can't quite make it alone"

(Learn To Fly - Foo Fighters)


Not a good day today (for many reasons, not all entirely related to Jasper)! We are home from our holiday (great), but unfortunately we arrived home to a house which has been 'violated' (but that is a whole other story I am not going to go into). As much as our home is Jaspers' sanctuary - where he feels safe and less anxious - it is my sanctuary too. Home feels like my shell, I can crawl into it and just be alone. I have no energy for people, for doing anything outside of home, for making small talk and pretending that everything is dandy. I just want to be home, in my pjs, preferably asleep....but I digress.

Jasper did not sleep well last night and was subsequently in our bed for much of it. The rare nights this occurs sees him being very hyper active and chatty (last night he was looking for rainbows) - I haven't quite worked out why this is happening. By 3am I was ready to strangle him and resigned myself to the fact that I was not going to get any sleep. I didn't like him very much at this point, but he redeemed himself a few hours later as he lay sleeping and I lay beside him, watching him....so beautiful and so normal.

I dread it when he wakes and my day begins - I can't do this alone and yet I don't want anyone around me. I spend all day counting the hours till I can sleep again, and Jasper can sleep again, and be perfect and normal.

Holiday.

We are currently holidaying (Phillip Island), although I use the term very loosely - there is nothing restful and relaxing about what we are going through thanks to Jasper! This is our first real holiday - just the 3 of us. Jasper has been really out of sorts and wanting to 'go home' all the time (don't we all)!

I think he is probably just too wound up and out of his normal routine and it is making him anxious and cranky. He hasn't been sleeping very well, Garth and I have been playing tag team, sleeping with him on alternating nights so the other can get a good rest.

However, as I speak, he has crashed on the couch so we are enjoying a rare moment of peace!

We have had to be careful to refer to the place we are staying as 'the holiday house' rather than 'home' so as not to confuse him any more than necessary.

We visited Churchill Island today and rather than all the animals etc he was most interested in the machine that dispensed little cups of animal food for $3. Garth introduced him to a similar machine yesterday at the Nobbies which dispensed lollies - guess what is going to be the next big obsession!

Garth took him down to the toddler pool at the resort where we are staying yesterday but he was not keen at all. He actually gave himself a blood nose with all his carry on as we tried to change him into his togs! Guess he doesn't like swimming!

We spent some time at the beach this afternoon and after his initial reluctance to go anywhere near the water he eventually loosened up enough to dip his toes in! He really enjoyed digging in the sand with his spade and bucket, making sand castles and getting Dad to tip water into his moat! We might give the beach another go tomorrow. We have tickets to see the Penguin Parade tomorrow night as well (9pm - could be interesting) so we'll see how that goes!

On the Autism front we have had to redirect Jasper from licking everything in sight (including his own feet) and screaming out in a funny, high pitch squeal, randomly, to display his frustration (I think)?! Must discuss these two latest 'traits' with Andrea when I see her next (Early Intervention).

After a very Autistic day yesterday Garth and I wondered (a little too seriously) if Phillip Island has an Occasional Care facility!! Failing that we thought we could wack on some floaties, launch him over board (at the Nobbies) and return for him on our way home (or not)!!! The fact that we were only partially joking tells you what sort of day we had!

Drowning, Not Waving.

"What I feel is an ocean
and I'm in over my head"

(Drowning, Not Waving - Bachelor Girl)


I'm due to go back to work in just under 4 weeks and to be honest, I don't know if I am going to be able to cope. I've been off work for the past 5 months - used up all my sick leave, annual leave and some long service leave - and I really hoped to have 12 months off all up, but I have to go back earlier.

Life is just as crazy and hectic as it was 6 months ago, nothing has really changed, so I know when I get back to work I will still feel overwhelmed and depleted (time off has made no difference there).

Driving Jasper to creche this morning (and in fact just the process of getting up and getting out the door) was a drawn out and frustrating affair. When I am back at work I am not going to have the luxury of time, to be able to do things slowly and calmly so as not to get him worked up. On a positive note, he didn't cry going in to creche or when I left, but he did ask to go home on the drive there.

I don't find it easy to ask for or accept help but sometimes I just feel so out of my depth, and like I am drowning. I wish someone would help me but I don't know what I would want them to do. I just know I don't want to do this on my own. I'm looking forward to our first Early Intervention session for the year, later this month, with Andrea. I think I will ask her to help with some strategies for getting out the door, Jasper to creche and myself to work without too many tears. I also have an appointment with Family Support the week after next. Maybe that is the right place to drop my bundle and ask for help!

Okay!

Jasper had his first day back at creche today after a 2 week break. I think he twigged about half way there, where we were going, and he sobbed 'home mummy, home'.

I tried to be upbeat saying 'you're fine, you will be okay' but he didn't buy it!

Lately he has been asking:
'You okay mummy, you okay?'
to which you have to reply:
'Yes, I'm okay, are you okay?'
'Yes, I okay' he replies!

It has become somewhat of a ritual and you HAVE to answer him in the same way or he just keeps asking and asking. Anyway, he asked this a number of times as we walked into creche.

I am wondering if he does this as a way to get positive reinforcement back that he is, in fact, okay? And yet he seems to genuinely be concerned when he asks if I am okay (especially if i hurt myself or curse under my breath about something). It's interesting and kind of cute.

As soon as we get in the car to go anywhere he seems to become instantly anxious, saying 'go home, go home'.

I would like to be able to prepare him earlier and tell him we are going to creche (as I do for other places we go) but I don't think I could bear the 15 minute drive to creche with him crying about it!

As for his day, he was very happy when I arrived to collect him from creche tonight and 'apparently' hadn't been upset for long this morning.

He was a happy, albeit tired, little man tonight so he had an early bath, declined dinner (as is the norm) and was in bed 30 minutes after his dose of melatonin (and a good hour earlier than normal).

Stuff and Nonsense

"And you know that I love you here and now, not forever
I can give you the present, I don't know 'bout the future,
that's just stuff and nonsense"

(Stuff And Nonsense - T Finn)


I am starting this blog as a way of giving a 'voice' to the feelings I am going through upon learning 'officially' my son has Autism. So primarily it is to help me to make sense of it all, but if in the process it helps others who might be going through the same thing, then great.

It was perhaps a little over a year ago when my maternal and child health nurse 'suggested' it might be worth looking into Jaspers apparent language delay. I was a little concerned at his lack of language, as well as a few other little 'quirks', and agreed.

My 15 year old son had previously been diagnosed with Asperger Sydrome in April 2005 - 4 months prior to Jaspers birth - and so I was fairly familiar with Autistic traits and could see some of them in Jasper.

The past 12 months has been a whirl of early intervention, speech therapy, occupational therapy as well as regular visits with Ken Armstrong (paediatrician).

3 days before Christmas we were given the news 'officially' although we have for a long time 'believed' this would be the outcome.

I can't 'think' too much about it, if I try to imagine the future - even one day forward - it scares me. I don't know what the future holds, and I don't know if I can do this forever. All I know is that I HAVE to do it today.