Back again!

It's been a while in between blog entries, which indicates how very busy life is. I feel though that we are slowly taking it all in our stride and this 'craziness' has become our 'new normal'.

Life is a flurry of appointments - Occupational Therapy, Speech Therapy, Play Therapy, Group, Doctors/Specialists (and that is just Tuesdays and Fridays...........and that is just for Jasper). Then we have creche and work (Wed/Thur) , and a myriad other appointments for the rest of us (all of which are scheduled on a Monday). I don't think in terms of what day of the week it is anymore, I think in terms of what appointments I have on any given day!

Using our picture board Jasper is getting really good at knowing what day it is and what that means we will be doing.

Weekends are reserved for housework, running teenagers all over town and finally, crashing in a delirious heap!

Lots of little things have been happening for Jasper. We started him on fish oil about a month ago and despite what we were warned, he actually loves the stuff (strange being that he is such a fussy eater generally). We call it his 'magic sparkle juice' (as when stirred in to regular juice it makes sparkly bubbles appear on the surface). Whether or not it is associated at all, I have seen a real improvement in his cognitive ability and development, as well as his language.

He loves doing puzzles and is able to complete a 25 piece puzzle on his own, actually, the other day he completed a 40 piece floor puzzle on his own. I can see him starting to turn the pieces around to match where they fit, he is learning to turn all the pieces over before he starts so he can see the picture part of all the pieces and also starts with the corners and borders as I have shown him to do. He enjoys games such as memory and matching type games and is really improving with the turn taking.

I've also noticed Jasper is indulging in lots of dramatic and make believe play. The other day he came up to me and said "I'm not Jasper, I'm a puppy" and got down on all fours and started 'woofing'. I said 'Hello Puppy, are you tired"? He replied with a 'woof' and curled up on the floor pretending to sleep.

This morning we went to buy some fruit and vegies at the shop - Jasper loves to pick out the vegies and put them in the bag. When we got home he went into his room, got his little shopping trolley and asked me for 'a bag and some carrots'. I put a few carrots in a plastic shopping bag and he popped them in his trolley and 'went shopping'. He amused himself all afternoon pretending to buy the carrots and wheeling them around in his shopping trolley.

Another dramatic scene he will often act out is 'going to school. He comes out wearing a bag like a backpack and says 'I'm going to school now mum'....'see you later'....and off he goes! This one though is just copying what he sees his big brothers doing each day. I try to extend the play by asking questions - if nothing else it is good practice for his language development.

He still loves to constantly ask where everyone is - over and over - and he loves me to tell the same story of what we are going to do, over and over ('tell me again mum, tell me again'). He often asks (especially if we are out in the car) 'what's happening next mum'?

Food and eating continues to be a big problem. He eats a very limited range of food at home, although eats a lot of the one thing. For example, today he has been obsessed with carrots and has eaten four raw, peeled carrots (and asked for many more). He requests a lot of different things but then refuses to eat them - I have a lot of trouble trying to get across that he has to finish one thing before he gets anything else and I end up throwing out a lot of food. I am however having some success limiting the constant drinks he asks for all day (usually chocolate soy milk or juice). He is allowed either of those at a meal and then the rest of the time I keep his drink bottle handy with water and insist he drinks that between meals.

Over the weekend we gave his room a bit of a makeover and he spent his first night last night in a 'big bed'. I wasn't sure how that would go, he has never attempted to climb out of his cot although most nights he wakes and calls out to come in with us. He loves his new room and he went to bed and stayed there, sleeping right through the night (and not falling out which was my other concern). In the morning he called out for me to come and get him up!! I bought him a little dinosaur night light which he also loved I didn't know whether the constantly changing colours would be too stimulating for him to sleep through but he was fine - and at least he could see his way to our room if he happened to get up in the night.

The only other real news is that he has been sick for the past week with gastro and does not seem to be improving. We are off to the doctors tomorrow. He is complaining of really painful tummy cramps - he calls out in pain and clutches his tummy, saying 'sore tummy' and will usually lie down on the floor till it passes. He has had a week of really yucky, runny (and very smelly) nappies - so something is not quite right. I am beginning to wonder if it might be more about the 'gut' troubles autistic children tend to suffer, rather than just gastro and will bring that up with Ken when we see him in August. He is already mostly dairy free - may need to go gluten free as well.

Sponge Bob saves the day.

(and my sanity - once again)! I should know better by now, it is my own silly fault. I had to run into the supermarket for a couple of things - an hour and a half later we made it back to the car alive (just).

I don't know what it is about shopping with Jasper but I do know it is a nightmare - whether it is running into the shop for one item or doing a full on grocery shop. There are so many triggers for a meltdown. It starts when we get to the entrance of the supermarket and the automatic sliding doors - Jasper has to be the one to make them open. If they are open when he gets there he does not like it one little bit, and we are not allowed to enter the shop until the doors have closed completely (and 'he' has to be the one to set them off to open). With a constant stream of people going through the doors it is amazing we ever make it inside at all.

Next is the trolley saga - he likes to choose the exact one (which is more often than not, right in the middle of the stack, and therefore impossible to get at). He insists on walking and will not sit in the trolley, and instead spends the entire time insisting that I carry him. I repeat clearly and calmly - 'Jasper can walk or sit in the trolley, Jasper choose'......nup........'carry me'.........'Jasper can walk or sit in the trolley, Jasper choose'......nup.....'carry me' (and on and on it goes)!! For some reason when we are in the supermarket it is impossible to be able to get his attention (normally I would try to get his eye contact and tell him very briefly to 'stop, sit in trolley' and hold the eye contact, repeating the request until he obliged). Not in the supermarket - there is no way I can seem to make him listen, let alone comprehend.

Saga number three is getting into the supermarket through the little electronic gate thing because once again he has to be the one to make it open first (oh, and we HAVE to enter through the left gate, as well as the left door at the front - we once went out the right door and had to enter the supermarket again, through the left door so we could exit through the 'correct' door and avert a major meltdown).

As I attempt to push the trolley, Jasper insists on holding on to it and pulling it back towards us. By this stage I am normally ready to spontaneously combust through sheer frustration and rage. Unwelcome glares from ignorant people do not help any. I continue our trip through the supermarket slowly, speaking calmly, repeating over and over what we need to be doing. There are certain items of interest to Jasper we need to avoid walking past at all costs (chocolate soy milk for example) unless we plan to buy every last one from off the shelf. The dairy and frozen food aisle also set him off because it is cold ('I want a blanket mum' over and over).

Next saga is the checkout - give me strength - today was particularly a case in point. We normally do the self serve check out, and as fast as I am putting things into the bag, Jasper is taking them out, which sets off the silly checkout and necessitates a staff member coming over to reset the checkout. All this with Jasper harping and whining in my ear. At this point I usually give him some coins to put in the dog (which allows me a brief reprieve to gather together our things and be on our way). The only down-side to this little habit is that Jasper is unable to pass any sort of donation tin or coin slot without wanting to put money in it.

Then it is time once more to negotiate our exit through the automatic doors - I was just about in tears today as every time the doors just about closed someone would set them off to open again. In the end I managed to get out but Jasper refused to follow until he could open the doors from closed, himself. Hence the reason it took us 90 minutes to grab a handful of items.

As we set off in the car on the way home I was screaming silently, in my head, every known swear word such was the frustration and anger I felt. It takes so much mental energy to remain calm and to repeat things over and over to Jasper (also to listen to his constant chatter and answer him to his satisfaction) and sometimes I wonder how much of this frustration and anger you can silently take on before you explode.

Once I have exhausted myself with my silent, unheard screams I start to breathe deeply and slowly in an attempt to relax. All is good, it is over, we are in the car on the way home with a Sponge Bob dvd (Jaspers latest obsession) for him to watch and (hopefully) allow me a little bit of peace and quiet. My feelings at this point vary between being very angry at the situation, at Autism, at the fact I can not simply run into a supermarket without so much drama.......then my anger is directed at the people around me, family, friends, even strangers, who go about their lives with seemingly no comprehension of what I go through. I resent their perfect lives and I resent the lack of support and understanding, especially from family - I don't think anyone fully realises what I go through every day. I resent the fact there is no getting away from this, it is with me all the time - sometimes I wish it would just go away, even if only for a day.

Then the anger seems to turn into defiance - I will not let this beat me, I will not let it win, it will not break me. I will tackle it head on and I know that I can.........and will. I will devour every last piece of information and knowledge on autism to equip me with the answers I need to steer my way through this nightmare intact. It makes me feel strong, if this hasn't broken me yet then nothing ever will. There is nothing I fear anymore because I am living through what is surely among the cruelest of jokes life could throw at anyone.

After all this internal raging, I once again feel triumphant. I know what I have to do, I have seen results from strategies I have implemented - it empowers me to go on.

Easter.

It has been two weeks since my last post and things have been going along pretty well - which is quite a bold statement considering it is school holidays (I should be more frazzled than this)!!!

Easter has come and gone and Jasper was very excited about the whole thing. He seemed to really understand the concept of Easter Bunny etc. We talked a lot about Easter, we counted down the sleeps until Easter Bunny came and he was very aware that Easter Bunny would be leaving chocolate (and Jasper LOVES chocolate)!

Jasper was also taking part in Easter activities at creche (he made the cutest Easter Bunny mask and little basket to collect eggs in). They talked a lot at creche about the Easter Festival, particularly the dragon - and being that the dragon museum is directly opposite Jaspers creche, they got to witness a lot of activity in preparation of the festival. When I picked Jasper up from creche on the Thursday night before Easter, the smaller dragons were out practicing their festival routine, with the accompanying drum beat, so Jasper and I wandered over to take a closer look. He has always been a little wary of the dragon (especially the crackers and loud drums) and when we got too close he did ask to go home (and he buried his head in my shoulder, not wanting to look).

On Friday Garth took him down to the childrens' activities at the lake. Apparently he was quite fractious - wanting to go on rides but then shying away once Garth had bought a ticket for him!

On Saturday Jasper came with me to my workplace (a creche) and was so well behaved. I was there for about 2 hours cleaning out a toy storeroom and he very happily sat on the mat and played with the cars.

He could hardly believe his eyes on Easter Sunday morning when he woke up (after an unusual sleep in) to find a trail of little easter eggs from his bedroom door to our bedroom door. He immediately grabbed his basket (the one he made at creche) and collected each egg, laughing almost hysterically!! When he got to the end of his easter egg trail he found a chocolate rabbit and a humpty dumpty egg to add to his collection! He was just about beside himself at this point! He raced down to Jordys room to tell him the news "Easter Bunny....lots of chocolate" and to check out what the Easter Bunny left for Jordy! Then he peeped in Zacs room to see his Easter Egg stash!! When he saw that mum and dad also had a chocolate rabbit each he got his shopping trolley, put everyones chocolate into it and spent the morning wheeling it around!! At one point he had all the rabbits lined up (of course) and we were not allowed to touch them. They were HIS captive audience, watching him play.....and he talked to them all non stop!!!!

Sunday afternoon we spent wandering around Rosalind Park and the carnival and he absolutely loved it. He had a ride on the cup and saucer ride with Garth and again was laughing hysterically (although Garth said he was also holding on to him for grim life)!

As much as we tried to ration out the chocolate he managed to demolish at least half of his, and boy, did we know about it on Sunday night. He was not misbehaving, just completely off his nut!! It was like he was on drugs! Walking along the street to find a spot for the torchlight procession in town on Sunday night he was saying 'wow, mum, look at the trees' (like he had never seen them before). Somewhat scary!!

He loved the torchlight procession. I wondered how he would handle the crowds and the noise but we spoke to him about it beforehand ('there are going to be lots of people and it is going to be a bit noisy'). He loved all the fire trucks and also the dragons - he did not seem scared at all. He was also a big fan of the fireworks at the end. He was content to sit on my knee the whole time and watch the whole thing pass by, often asking 'what's that noise, mum'?

Considering the hectic and chocolate filled weekend his behaviour was not too bad on Monday. I tried to keep things quiet and lazy at home, and even though he was a little more hyped than usual he was pretty good. We opted not to venture into town again to see the procession, instead he came into work with me to set my room up, and while he was there he requested to do a painting.

Today in the mail I received the letter from Autism Victoria, confirming his eligibilty to access early intervention services under the Helping Children with Autism package. At this stage my focus is more speech therapy, more occupational therapy and more time with Andrea (hopefully on a weekly basis). His language has improved so much - I counted a 9 word sentence the other day. He is asking a lot of questions and making a lot of comments, but there is still a lot of evidence of purely echolalic chatter.

He is also due to start his early intervention group on Tuesday (21st) which will no doubt be very beneficial. He is really coming out of his shell and enjoying social interaction with other children - I really hope to build on this too. At creche he is spending Mondays in the big room and so far has been coping well. I am just really, really pleased with his progress at the moment. It seems that as long as we constantly talk him through what is going to happen he copes with it. He will ask me a number of times a day to go through what we are doing - and he still asks often about where each family member is, although now he is more likely to answer it himself (he seems very aware of what our normal movements are - when dad and mum are at work, when the kids are at school or work or with friends etc).

We have also been engaging in a lovely morning ritual where he calls out when he wakes (usually about 6am) and comes into bed with us for cuddles. He asks for cuddles and will lay there quietly until it is time to get up. As soon as he sees the sun peeping through the blinds he will say 'time to get up, suns up'. It is just a lovely way to begin the day with a good hour of cuddles!!! He gets very funny (I think he is a bit of a mummys boy at the moment and says to Garth 'move away dad, just 2 people'). He is just very cute at the moment although he has his trying moments (usually between about 4pm and 6pm). He gets very ratty at that time and demands a lot of attention.

I am having great success with redirecting him when he constantly asks for chocolate milk - I will allow him one drink with a meal and then explain to him 'after this drink of milk it is only water'. I have a number of drink bottles sitting around and I try to drink a lot of water in front of him. Today he has been great with the water. I really feel like we are getting somewhere!!! Finally!!!

This is not to say that things are easy......and I find by the time Garth gets home from work I have had enough of him and well and truly ready to hand him over. I avoid going out with Jasper as much as possible during the day (especially the supermarket) but I find that if I explain to him a few times what we are going to do he is not too bad.

Today I took him out to McDonalds for a treat, for lunch. We sat in and he was great. It was the first time I have ever seen him finish his chips and nuggets (he is normally not a fan - just loves his diet coke)!! We were able to sit there and chat, then he had a small soft serve cone to finish off. It was lovely.

I have found that the more 'strict' I am with the behaviour, the better he behaves. Before I was never really sure if his behaviour was 'just the autism' and he didn't know better, or if it really was bad behaviour I should be stepping on. I was reluctant to be too hard on him because I did not want to confuse him. But I find he actually responds really well to firm, clear guidelines - of course he loves to push the limits but if I stay firm he more often than not accepts that. I think that may be where Garth is struggling at the moment - Jasper seems to be able to walk all over him.

Anyway, tomorrow is a creche day (and a work day for me) so better go and get organised. Jasper has fallen asleep on my bed! He has been sleeping in with us a lot lately, probably not a great habit to get into but I just love that special time with him. I am not a real fan of attachment parenting but I can see some merits in it. I am happy for him to sleep in with us if he wants to.

Camping trip.

After lots of forward planning we had our first successful camping trip with Jasper. We spent the past week talking about what we would do, showing Jasper our tent, getting him to try out his sleeping bag etc.

We spent 2 nights at Anglesea, right on the beach - it was a great spot. I can't believe how well Jasper coped, he really took it all in his stride. I also noticed (perhaps because we were in a completely different setting to home) he did not constantly ask for things such as milk, particular dvds etc. He loved playing at the beach, loved playing frisbee (or 'wheel' as he called it), beach cricket and kicking the footy - better still he loved doing all that with his brothers around to join in.

He loved sitting with us in his miniature matching camping chair. He also enjoyed exploring nearby and didn't wander off - he was quite content to stay close to the tent. Jordy took him for a ride through the camping area in a hired pedal car which he thoroughly enjoyed - until Jordy came to a screeching halt at the end of the ride and Jasper went flying over the handle bars!

There was a great park and toddler play room where he had a really good play and met another little girl, and he absolutely LOVED the giant jumping pillow! He slept really well, ate really well and generally was a wonderful little boy. Hopefully we can do it again soon (and often) and it can become something that Jasper really understands, even though it is different to our normal daily routine - and it gets us out of the house and 'doing' something rather than being driven by structure and routine!!

Other than that he has been going really well. He saw Ken last week and Ken was very pleased with his progress. He had a play with Andrea at the Fun Factory which he loved (and constantly asks when we can play with Andrea at the Fun Factory again)! He's just going along really well - or maybe we are getting a better handle on it?

His language has improved dramatically to the point where he is speaking 5-6 word sentences. I can't wait to get back to speech therapy with him (hopefully really soon). He can now 'almost' (with a teeny bit of prompting) say his name when asked, and his address. He can also tell 'us' (rather than us telling 'him') where everyone is going to be on a given day.....'it's Monday, what are we all doing today?'.........'Dad's at work, mum's got lots of jobs, Brayden's at work, Zac's at school, Jordy's at school and Jasper is going to creche'!!!! Then he claps and says 'yay'!!!

He went in to creche really well today, no tears, I thought he may have been tired and crabby after our big weekend - especially the drive, he got quite grizzly being stuck in his car seat for such a length of time.

I suppose tonight will really tell how tired he is!

So so.

Jasper had a great nights sleep last night and his morning routine went very smoothly. We had Occupational Therapy first up, with Rachel, and that also went really well....then went shopping....that didn't go quite so well. Jasper hates shopping!

Everytime I stopped to look at something Jasper would call out 'quick, quick, quick'. I think he may have got that from me - I noticed myself saying it to him quite a few times today!

For a treat I took Jasper to Pizza Hut for lunch and he was so well behaved. Not sure if it helped but before we went in I went through what we would be doing a few times - 'we will sit at a table, we will eat some pasta, some pizza and some ice cream and jelly, when we have finished eating we will go home for a rest'. To which Jasper replied 'okay mum, okay' in such an earnest little tone of voice!

I was so pleased with the way Jasper behaved, normally he would not sit still for that length of time, much less eat anything. He had a bowl of pasta, some grated cheese on a plate, asked for more grated cheese, a bowl of jelly then a bowl of icecream with sprinkles. He was very good at finishing what he was eating before he got something else too which is something we are working on.

All in all, not too bad a day. And what's more, I found a car shaped cookie cutter at the shops! Guess what is for breakfast tomorrow - car toast!

Untitled.

I LOVE Jasper but I really HATE this thing called 'autism' and I HATE what it has done to my life :(

We've got our old Jasper back!

Well, that didn't last long! Jasper is back to his 'very autistic best' this afternoon. Right now he is standing beside me banging his head into my arm, screaming repeatedly 'I want to watch Cars'. He has been so rowdy this afternoon that I put his Cars dvd on for him and asked him to have a rest (saying it was 'rest time'). He kept coming into the kitchen where I was busy, asking for 'milk' and 'morning tea' over and over. I kept saying 'rest time now, tea time next'.

To cut a long (and stressful) story short I have just turned off the dvd because he refuses to sit and watch it (but is screaming for it to go back on). I'm probably doing the wrong thing but I am tired and worn out and I have had enough. This whole routine thing takes so much patience and mental energy. I really hate these sorts of episodes, it will most likely just spiral out of control now till we get him into bed. Sometimes I would just like to have a nice quiet weekend to myself without having to abide by this strict routine, sometimes I would just like to do 'nothing at all'.

Jordy has taken matters into his own hands and placed Jasper in his cot - kicking and screaming. Jordy does not cope well when Jasper behaves like this.

Groan.....give me strength. I knew it was too good to be true.

Soup.

Okay, where did Jasper go and who is this imposter?? I cannot believe some of the amazing things happening here.

As I write, Jasper has just finished his lunch - he actually sat at the table and ate a little bowl of homemade celery soup (had two serves) and a star shaped vegemite sandwich (thank goodness for cookie cutters)! I can't believe it?!

A week ago he would never sit for a meal, whatever I put in front of him he refused, he would request either pasta or eggs (and then usually refuse them once i prepared them).

I had a thought today as to why this is working - in the past I have tried not to make too much of a fuss with food, just put it down for him and then left him to it. Since we have started our routines one of us has been actually sitting down at his little table with him to eat lunch or morning tea etc. I make a matching meal for whoever is sitting with Jasper and we make a point of saying 'lets sit down for lunch', 'yum, this is a yummy lunch' etc and he is mirroring what we are doing and saying. It is almost like he needed to be shown (or reminded) what to do.

Food cut into shapes is working a treat (why did I not think of it before) as is his little divided plate with 3 sections for different foods.

I am so excited he is liking the celery soup (he also had some last night), being that he is not a big vegie eater it is a way of hiding vegies (it contains celery, carrots and potato). I think he will probably eat pumpkin soup too, I know he has in the past.

Behaviour wise he is being a bit of a pill today (but better than normal). I know this is because things are not as structured on the weekends, so I find if I keep saying things like 'we will have a play now, then a rest, then dad will be home' it sort of keeps reminding him to 'play now' and he is happy with that. He starts repeating this to himself as he plays.... 'play now, then rest, then dad home'....and on it goes!

He has just tipped out his box of duplo and built a very impressive tower - almost as tall as he is - and is telling Jordy and I 'don't touch the tower, okay'. Jordy just informed me that Jaspers tower is 38 blocks high!

Anyway, next time I go into town I will be on the lookout for large cookie cutters - I am thinking a car shaped one will be great when the novelty wears off stars and little men!!

Wonderful!

The past 4 days have been pretty close to perfect (at least the great moments have far out-weighed the not so great ones).

On Tuesday we decided to 'finally' get serious about a routine and I cannot believe the difference it has made. Jasper sat down and ate 3 meals and 2 snacks throughout the day (and we took lots of photos to use as prompts) and the best bit was, there was no whinging for food at all. He had some indoor play, some outdoor play and a rest. We kept repeating to him the whole day what the routine would be and he would say 'say it again'...it was like a big game. He already repeats back to us the night time routine - as soon as we mention the bath he says 'bath, then stories, then bed'.

Wednesday and Thursday were perfect - he was happy and there was hardly any of the anxiety or constantly repeating the same thing. His language was great, his mood was great and best of all, his behaviour was great!

Last night almost went pear shaped but as tired as i was (and goodness, was I TIRED) I managed to follow the routine (nearly let it go but the thought of another feral friday made me stay strong). The only glitch was forgetting to give him his medicine (and wondered why, when I put him to bed, he called out for the next hour and refused to settle).

Today, which is usually the day I least follow any sort of routine (it is just a catch up day for me - whatever has to be done) I decided to stick loosely to some form of structure. Before we left the house I repeated to Jasper a number of times 'We are going to ..... take the kids to school ...... call in to see Rachael (I had to call in at work to fill out my time sheet - Rachael job shares with me and Jasper is familiar with her)......then have a play at the Fun Factory. It took him a few moments but I think he remembered the fun factory (had not been there for a while) and started talking about the 'motor bikes' and 'balls' and got quite excited.

Our play at the Fun Factory was a great success. He is usually overwhelmed by the noise and the number of children running around - and gets very funny if anyone breaches his personal space. He wanted me beside him for the first 5 or 10 minutes then gradually I moved further away till I was sitting at a table and he was happily playing by himself. After an hour or so he even made a little friend (a little girl about his age, maybe a bit younger) and was asking her to follow him. The two of them had a wonderful time, running after each other, laughing and giggling together. When he wanted to have a go at doing something different he would talk to her and turn her head (rather than actually pointing) in the direction he wanted to go saying 'come with me'. I was reluctant to leave while he was having so much fun and interacting so well. We stayed on until all the others left (I don't think there was any way I would've managed to talk him into leaving prior to that)!!

We grabbed a brochure with a photo of the fun factory on it, and will use that as a visual prompt as well (although I am certain he understands the words 'Fun Factory' now).

He was starting to get cranky as we headed home and I tried to keep him awake by talking to him about what we were going to do when we got home.....lunch, a play, a rest.....then the kids would be home from school. I'm not sure if it is pure coincidence but I have been using a gingerbread man cutter to cut out a shape from his sandwiches (instead of boring triangles) and he has subsequently been eating all his lunch - today he had a vegemite man and a jam man! He was even role playing with the 2 sandwich men as he ate. We are limiting his chocolate soy milk (or normal soy for that matter) to only at meal times and he has been coping okay with that - he still asks occasionally between meals but I just repeat 'chocolate milk for breakfast and lunch and dinner, not now' and he has been accepting that.

To cap off a wonderful few days - he got an invitation to a birthday party (from a little girl at creche)! To be held at the Fun Factory no less!!!

I have just finished reading a wonderful book called Smiling At Shadows (see 'read me' list) and I highly recommend it. Even now, after seemingly absorbing so much information about autism it amazes me that all these little snippets continue to leap up at you from the page - feelings that you identify with, situations you have found yourself in, strategies to try. You sort of feel, as you read along, that you are nodding your head in agreement the whole time. This is not just my journey (or Jaspers) there are people everywhere, everyday on the same journey, living the same roller coaster life. And mostly surviving! There is hope!

You okay banana?

Here is a funny snippet from our trip to the supermarket yesterday!

I had an armful of things, Zac was ahead of me with a couple of things and Jasper was following a few paces behind me holding 2 bananas. Then I heard him talking to the bananas.........'you okay bananas, you okay' 'that's good bananas' 'I'm okay bananas'.

Zac turned around and stated in a confused tone "Jasper is talking to the bananas".

Yep, only in our crazy world!!! Kind of cute though!

Feral Friday.

At the risk of sounding negative, today was our usual 'Feral Friday'. After 2 long days of creche (for Jasper) and 2 long days at work (for me), Fridays are generally not a great day. We are both tired and cranky and out of sorts.

I have noticed over the past week how great Jaspers behaviour is in response to more structure and set routines but unfortunately it all unravels on a Friday. It all started last night when we did not stick to our newly implemented night time routine of 'dinner, bath, stories and bed' and just went downhill from there!

Add to the mix that Jordy needed to take a 'mental health day' (sickie) and Zac phoned at some ungodly hour telling me he wanted to move back home (he has been away for the past month - a whole other story)!! So it has been a really busy day (and hot - blah).

One thing I am finding is that it is infinitely easier to find the energy to stick to these routines than it is to deal with the behaviour without routines. This may very well be my first 'light bulb' moment!

Today was just crazy, but there was absolutely no structure to our day and it threw Jasper out in every possible way - one thing I really noticed was his demanding behaviour all day for food (that he doesn't eat), he was hyper active, loud and just completely silly - in the end he was just beside himself and teary. So tomorrow - routine, routine, routine!!!!

For Andrea! Something positive!

This post is especially for Andrea - our wonderful Early Intervention/Play Therapist person! Just so she knows I haven't completely lost the plot and drowned in doom and gloom!

It is subtitled "10 wonderful and beautiful things about Jasper".

1. Jasper gives the absolute best cuddles in the whole entire world. We love to lie with Jasper when he wakes early, in our bed, and enjoy some really lovely cuddles and kisses before we start our hectic day. Just this very morning I lay in bed with Jasper having a really lovely cuddle. I said "I love you Jasper"...then I said "I love you mum"......to which Jasper replied "I love you Mummy"!!! We lay quietly in bed listening to the birds singing and Jasper said "What's that noise" then answered "Magpies I think". I really, really love this kind of start to the day!!

2. I really love Jaspers crazy toes, all bunched together with his second toe sticking up above the others! So feral yet so cute!! I often massage his toes telling him "I love Jaspers toes". Jasper hates anything touching his feet and keeps his toes so tightly bunched up together. I could spend all day kissing his gorgeous (yet feral) feet!!

3. I love it when I get to creche to pick Jasper up after a long and busy day, and he is always so excited to see me, and so happy! I just know he has had a fantastic time - and lately he is settling so beautifully at creche. He runs in to get his bag while I sign the book and he comes out of the bathroom saying "kids all gone" (being that we are usually amongst the last to leave)! His carers, especially Toby Lea, are so wonderful with him....and I am so thankful for that. They always have something really positive to say about his day!

4. Tonight Jasper and I lay watching the football on tv. He loves watching any sort of sport on tv. I tried to familiarise him with the wonderfully gorgeous "Richo"....everytime he got the ball I grabbed Jaspers arm to shake in the air and shout "Richooooo....woo woo woo"!!! He thought this was so funny!!! When he is outside kicking a ball around he often shouts out "Go Richo'!!! That's my boy!!!

5. Jasper just adores his three big brothers (pictured with him above) - he asks after them constantly - and they absolutely adore him too! I LOVE watching my boys all interacting together! Jordy is the worlds greatest big brother, he does so much for Jasper and Jasper absolutely adores him. I think Jasper annoys Jordy the most but I also think that Jordy understands Jasper the best (Jordy has Asperger Syndrome). I really think they would be lost without each other. Jasper LOVES his Brayden and constantly talks about him. He loves taking train trips to visit Brayden in Melbourne and we especially love having Brayden come home to visit us - when Jasper wakes up in the morning and realises Brayden is here he runs to hop in bed with him and give him his special cuddles! He is fascinated by Braydens 'pictures' (tattoos) and piercings. Jasper also loves his 'Zaci' so much and loves it when we pick him up from work so that he gets to give him a cuddle as well (and always says "I love you Zaci"). Zac and Jasper have developed their very own, personal, sort of 'greeting'!!! Almost like a secret handshake - but more like a secret cuddle!!!

6. Right from the moment Jasper came into our lives, I have loved the way that he is like the common link that joins us all together to make us a family - I really believe my boys see him that way as well. He is a very special, much loved and much wanted little boy and he is the common link in our family - our anchor.

7. I love the way Jasper loves licorice, just like I do! I have always loved licorice but even more so when I realised no one else in the family liked it (which meant I never had to share it)! Until Jasper came along that is!! He begs me for licorice every time we drive past our local shop! And if I dare to even take the tiniest bite off the end of his licorice strap - well, I am in big trouble!!!

8. Jasper looks so much like his father (appearance wise) that I so obviously did not get a look in! But Garth always says that Jasper might be him on the outside but is certainly me on the inside!!! I can see that and I do like it! He has a fiesty, bossy streak that I recognise in myself - moreso than in any of my other children - and I really love to see that in him!

9. Jasper is such a lovely, friendly, little kid. When we go through the Mc Donalds drive through he waves at the lady at each window (and gets quite offended if they don't wave back). At times he has such a lovely nature, so friendly and open. As a little baby he was quite shy and reserved around other people. I have really enjoyed seeing him open up and relax more around strangers. He has some really lovely social skills (for which I am so grateful).

10. I love to watch Jasper sleep - he is so beautiful. I love the way he sleeps on his tummy, as he has always done, and scrunches his body up so his cute little backside is sticking up in the air! I love the way he giggles and laughs in his sleep. I love watching him smile as he sleeps and wonder at what lovely thoughts he is having! I love the way that the very first thing he calls out in the morning, when he wakes, is 'mummy'! I feel priveliged and loved.

We all love this little boy so much, he has brought so much joy and love to our lives. How on earth could we even imagine life without him. God has sent him to us because he knows we are the best people to love, teach and care for this little treasure of a person.

Green Shoes.

I recently bought Jasper some new shoes - I could not find the slip-on Dunlop volleys he usually wears (easy and comfortable - Jasper is very funny about what goes on his feet) and the closest thing to it was a pair of Dunlop lace-ups (in gaudy fluoro green).

I had a quick look in Pumpkin Patch and found two other pairs more similar to the slip on style so grabbed them as well. I guess I should've known better than to buy three different pairs of shoes because it was inevitable he would form an obsessive attachment with one pair and steadfastly refuse to wear the others - which is exactly what happened!

Jasper absolutely ADORES his 'green shoes' (or running shoes as he also calls them). I tried hiding them in an attempt to get him to wear one of the other pairs - big mistake!! So green shoes it is! All the time, no matter what outfit he is wearing! Once he has his green shoes on he just runs!! We call him Forrest (as in Forrest Gump) as he runs back and forth saying 'watch me, watch me'.

So now I am thinking, to avert future drama, I probably need to buy another pair of green shoes in the next size up. Who knows how long this obsession will last!

My World.

"Words are flying out like
endless rain into a paper cup
They slither while they pass
They slip away across the universe
Pools of sorrow waves of joy
are drifting through my open mind
Possessing and caressing me

Nothings gonna change my world
Nothings gonna change my world"

(Across The Universe - The Beatles)


At the moment it is like this - exist and sleep. You could also throw work in there as well, which even though it takes a mammoth effort to organise myself for two days, is a welcome reprieve (the highlight of my working days being my lunch hour - one whole hour x 2 to myself, what joy).

On a positive note, Jasper is getting so much better about being left at creche - he didn't even cry when I left on Thursday (for the first time in ages). I'm certain it is the pictures that have made the difference and we have set up a bit of a routine where we stop on the way to buy him his 'special milk' (a chocolate up and go).

I was lying in bed last night - my usual 'worry hour' between 3am and 4am - where I torment myself with too much thinking. It occured to me that 'this is actually how my life is going to be from now on, it is never going to change, this is my world'. I think about Jasper and his behaviour - what could I have done differently, how could I change things to make life easier. It is very easy to lie there in the middle of the night realising all the things I should be doing but during the day it is a different story. I feel like I am moving in slow motion all the time. All my good intentions from the night before are of no use to me when it really matters.

I really hope a day will come when I can take it all in my stride, where my world becomes 'normal' (not as it was before autism, but where I am so used to the way things now are that I don't remember life being any different). I hope a time comes when I can help someone going through what I am going through now and being able to say "It gets better, it's not so bad" and to really believe that!

At the moment, I know I am wallowing (and I really hate that but I figure I am entitled) however I really do appreciate it when people agree with me that "yes, this is really hard". I know others mean well when they say "Oh but you wouldn't even know Jasper has autism, if anyone can handle it you can...blah, blah, blah" and they may think they are helping, but they are not. It is just what people say to make it easier for themselves. I bumped into my maternal and child health nurse recently (have not really seen her since she initially suggested getting a second opinion) and she was unaware of the outcome. When I told her Jasper has Autism she looked genuinely sad and I could tell in her eyes that she knew exactly what that meant for me (and having a child with autism herself she knows better than anyone what that means). In that instant, I felt understood by another person who has travelled the road I am travelling now. She made me feel it was okay to think that the whole thing really sucks - because it does.

Jasper had his final speech therapy session with Tamara last week and I am so sad about that (she is moving). I really feel the speech therapy has helped enormously and I now feel like a part of my support structure has been kicked out from under me. Hopefully it won't be long before we can see someone else, and in the meantime I have enough to work with I suppose. I'm just wondering though, do I wait and see if/when Tamara is replaced or do I seek out someone else, if so, who? I don't know, I am a bit confused. Up to now I have just relied on being pointed in the right direction and having these wonderful people appear (Tamara, Andrea, Rachael, Ken etc).

I have to share this snippet from our day yesterday (it is from the 'give me strength' file)!! I suppose I can laugh about it now, but at the time......geez louise...give me strength. Maybe others can relate.

Jasper: What's that noise mum?
Kristen: It's the microwave
Jasper: What?
Kristen: It's the microwave
Jasper: What?
Kristen: It's the microwave
Jasper: What?
Kristen: It's the microwave
Jasper: What?

At this point I walk over to the microwave and point to it as I say 'Microwave making noise'

Jasper: It's the microwave mum, it's the microwave.....and off he walks!

It is just this constant stream of 'words' and conversations that don't make sense that really wears me down. It is great that he is talking more but it is non stop chatter and if I engage in the conversation it is a constant stream of 'what' that nearly drives me insane. That and the constant demand for attention to play with him or get something for him.

This morning he had a massive melt down - he asked for a bowl of custard and wanted to eat it while he was sitting on the loungeroom floor, when I took it over to him he started crying and waved me away, so I put the custard on his little table. He then cried louder wanting the custard so I took it back to him and again he waved me away and wouldn't take it. This happened a couple of times more before I set the custard on his little table and said 'The custard is on your little table when you want it" and then ignored him. He cried and screamed and eventually I picked him up and put him in his cot. After he calmed down I went in to him and got him out. Then the whole thing started again? I just don't get it sometimes and I don't think he does either. I wonder how much of it is just bad behaviour that I need to be firm on or if he just can't get across what it is he wants and it is purely frustration.

A short while later he wanted his dummy (which was in his cot). I was doing the dishes, Garth was eating breakfast and he was going from one to the other badgering us to go in and get his dummy. I kept saying "Mum is washing dishes, Dad is eating, Jasper get dummy". Eventually I agreed to walk to his bedroom door with him but made him get his dummy from the cot himself. His lack of patience or ability/desire to do things for himself is non existent, and yet at other times he wants to do it himself "Jasper do it, my turn" such as wiping up a spill. I can't work it out.

What I do know is that I have to set up a more structured existence at home, with more rigid routines and lots more photos/pictures to help him see what is coming next.

He has just wacked the wall with his shovel, better go and sort out the next drama!

Train.

I promised Jasper last night that we would be going for a train ride today, to Melbourne, to visit Brayden for the day. This morning he was only half awake when he yelled out 'train', so he obviously didn't forget!

He loves trains (and train tracks, train crossings and boom gates). He became very anxious while we were standing on the platform and the train pulled up (but I think this is because recently at the train station in Shepparton, whilst doing a bit of 'train spotting', a train tooted as it went past and Jasper nearly went through the roof - he startles very easily but he got a really big fright this time and has been a little wary of trains ever since). Once we were on the train though he was very excited!

A little way into the journey he stood at the window and saw a crossing with boom gates, so for the rest of the trip he whinged about seeing 'more boom gates'. When he wasn't whinging about that he was talking non stop (which for him is just repeating the same thing over and over again) - 'Going to Melbourne, see Brayden......going to Melbourne, see Brayden.....going to Melbourne.....see Brayden' - interspersed with - 'Where's the boom gates.......where's the boom gates' and 'green light (above the toilet door).....green light.....green light'. And on and on it went! I could feel the glare of other travellers on me, annoyed with having their peace disrupted.

As soon as we were off the train and had met up with Brayden his focus shifted to 'go on the tram......go on the tram.......go on the tram'. Once we were on the tram he became obsessed with wanting to put money in the ticket machine and wanted to hold on to the handles hanging from the roof (which necessitated me standing up, holding him, so he could reach). At that point I realised it was going to be a LONG day!

We had lunch at a really nice vegetarian place but Jasper fastened himself into his stroller and refused to eat! His eating (or lack of it) is a concern at the moment. He seems to exist on milk, custard, jelly and pasta. Although today he mostly ate rubbish and I am paying for it now (twisties, diet coke, lollies and an ice cream cone). I generally don't allow those sorts of things but relented somewhat today, in hopeful anticipation he would reciprocate with good behaviour.

We ended up coming home earlier than planned as Jasper became too difficult. He continued with this behaviour on the way home (escalating to head butting, slapping and squealing) before dropping off to sleep as we passed the Kangaroo Flat station (ie: 10 minutes from our stop).

Friday is usually not a great day anyway, after he has spent the previous two days at creche - he is very tired and cranky as a rule. I had my first two days back at work and I was tired and cranky too! Having said that we did manage to have two stress free mornings getting ready and off to work/school/creche (AND on time)!!! So that was a bonus - I used the photo of creche (must get one of my workplace) and school before we left home and he was fine! He did cry though, both days, as I left him, but then he does the same thing at home if I go out without him anyway. He reportedly had two great days at creche (and they were long days this week as opposed to the shorter ones he was having at creche while I was not at work).

His carer mentioned he spent a lot of time holding on to a car - not playing with it as intended but instead - spinning the wheels around and watching them spin. She also mentioned he tends to look at her out the corner of his eye. I have noticed him doing the same, not so much when he is looking at me, but I have watched him watching something (usually something that moves, such as the fan going around) from the corner of his eye. On a positive note he received a number of stickers for sitting on the toilet at nappy change time - and was very proud to show them off to me.

Jasper is very hyped up tonight and is getting into a bit of a frenzy, asking repeatedly for his 'basketball top'.....which he now fortunately has on.........and just bit Garth in frustration. Sigh. Time for him to go to bed I think - and I won't be far behind. I am mentally worn out from having listened to him all day. The repetition and the constant demands really wear me down.

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.