If you put ice in my cup, it wont fall out because the lid is on.

Which is amazing, I forgot to put any special drink (sanitarium up and go) in the fridge yesterday so it was warm, this is usually Alec's prefered way of having it but not Riley, so being Christmas we ofcourse have an esky with ice in it out the back, Alec saw me put ice in Riley's and then said that to me, well i am still smiling from ear to ear, he always makes sure his drinks come with no ice, he hasn't liked the sound it makes when it hits the glass.

He wouldn't let me get a photo of him though, so this was the best I could do

The other child

You know what is the hardest thing to balance, how to split yourself fairly and equally between your children. I know sometimes Riley comes out second best, but that is no excuse for him to scream at me for an hour and 15 minutes, I admit a good amount of that time I locked myself in the bathroom. For some reason Riley is unable to accept NO from me, but if my mum says NO, he says "ok mutti" if Michael wasn't on holidays and my mother in law wasn't staying here I'm not sure I would be so calm right now, because the prospect of spending the day with my 3 year old sends me cold, it is strength i sometimes don't have.

Alec on the other hand is handling the holidays very well, there is a little more stress evident as he gets overwhelmed by some situations but on the whole he is doing well. I even got a photo of Alec and Santa and then he wanted to go back again with Riley, this is the same boy who when asked looked fearful and hid behind something at the mention of santa photos, we have come a long way.

1st School assembly

We were so excited, this week we got our first school photos back and then Friday the first kindy PP assembly. All the school came to watch and kindy and PP did songs and a nativity play, they were all just gorgeous. Alec sang along too and wasn't bothered by the people or the noise.

Then they had a party and a disco, Alec joined in at the beginning, dancing and running around with his friends but it did get a little loud for him so we went and played around the corner and sat with Mrs Mirco, Helen Alec's aide is just fantastic she is so clued in to his moods and needs and even does his compression exercises when he gets a bit worked up.

Riley was where the food was and had a lovely time sampling all the goodies everyone bought along.

We coaxed Alec back to the others and they had a visit from Santa which Alec just loved, he loves Santa! After that he did a bit more dancing and as Santa left they all formed a conga line, Helen helped Alec out and once he got the idea he was off.

It was a fantastic day watching him participate, I have been so happy with the school he just loves it there.

Mortally wounded

My mum said I was lazy!

Michael said he sees it more as being distracted, I see it as the never ending drudgery of picking up, cleaning, preparing meals and picking up another 4 or 5 times.

No I don't have a tidy house, I do still manage to spend what I consider to be too much time cleaning, washing and picking up. I picked up the lounge 5 times yesterday. We spent all morning outside and went to a christmas party in the afternoon but still it was never ending. Riley was even kind enough to draw a picture for me above the lounge, I did take mums advice and made him clean it off.

Monday is really meant to be a rest day before a week of kindy and trips to therapy but not today! so far I have been to the grocery store and dropped Alec at kindy, prepared dinner including a potato salad, marinated some chops and cleaned 2 toilets and 1 bathroom and changed 4 nappies, and it is not even 11am yet! I could keep going all day but I just don't have that 'I love cleaning' bug, wish I did, I have friends who love to clean.

Two sick kids

We still don't have the results from Riley's blood tests but he had anti bodies for rubella, just have to wait for the measels and mumps tests to come back. He woke up Saturday morning and the rash was completely gone. This is Riley's rash, it was all over his hands, feet, legs, arms and tummy.
Alec on the other hand was fine until Sunday night, they were both off colour Monday and I spent the day sitting watching ABC kids cuddling Riley, Alec became sicker and threw up and today we went to the dr's and he has really bad tonsillitis, medicine giving isn't going well, one 5 ml dose of antibiotics took 20 minutes, we have 3 a day for the next 10 days.

Not much time for anything but caring for the critters right now, we did have fun with clag glue and glitter yesterday, we just hung our effort up in Alec's room..

When the right question is the wrong question

Today is a hard day, this week has been warm and I think it is having an adverse effect on Alec, the last two nights we have had extended meltdowns over such things as what animal cards each boy gets and how to prepare his dinner. He has been asleep as soon as the lights are out, which has left Riley wandering the house, one night until 10:30pm! He has been amazingly good though, at three he is learning action and consequence, something Alec doesn't understand. Lately we have been trying to re-enforce the we are cross about xyz but we still love you message, after telling Alec off a little while after he will come and ask if I'm happy now.

What I find hardest is to try and put myself in his place, I know how his mind works and know his expectations in situations but the stress of getting two kids through k-mart without losing the plot myself is hard, you know those looks I mentioned well I got lots of those today, I was able to stay calm and let him know what we were doing Riley was very good Alec was crying, cross, confused and demanding all wrapped up together. We got through it but it leaves me drained, it takes a lot of strength not to lose it in the toy aisle at k-mart I tell you.

memory

Alec is developing or actually has the most amazing memory. It has a lot to do with organising things in his head, making sure things are predictable for him. He knows how to get places, down to each turn that is made and land mark passed.

While he had no concept of time passed and such things as today, tomorrow, yesterday and this morning he can recall whole events as though they happened 20 minutes ago. This morning he asked me which way i was driving him to school, I told him the usual way, he laughed and said silly daddy, he drove me the wrong way to school, he went that way, we don't go that way to school. Well the last time Michael drove him to school was in August when I was at Kiwi Scraps, poor Michael it wasn't too funny for him as Alec had a complete meltdown, the stress of me not being there and then going the wrong way was too much.

He can be terribly adaptable though, we do park in the same place all the time when we go to ocean Keys, in the dark by the lift, unless Alec says he wants to go up the travelator.

Now when we go to EI he asks before we get off the freeway which way we are going as we do EI at two different venues.

This is just another part of our lives now, someplaces we can't go because the stress it causes him is too great but he is making progress. We are learning..

Every time I come here i cry!

Thank you Libby! As I write this I also learn so much. To be honest until the start of 4th term I hadn't really cried at all, now I do all the time. I made this blog to wrtie down whatever it was that came into my head and so far it is working, the crying wasn't expected.

I was talking to another Centre mum and we found we had the same worries and concerns, you see 4th term is when aide applications go in and decisions have to be made about schooling. Both our boys are going into pre-primary, the standard worries are, have we done enough, is this the right thing for them and us and is there anything else we should be doing and then the surprising one was the grief again. I suppose when you have to make these kinds of decisions it brings it back home to you that your child and your family aren't ever going to be like everyone else. This again makes me realise that we also don't have it that bad which I know but I also decided I was in no way going to belittle our situation based on the severity or lack there of , of Alec's condition.

I love the feedback, I like knowing I am not alone in all this, so Lib if you have comeback thank you, thank you for reading and being honest and not being offended

The Beach!

a soaring heart

Michael took the boys off to try and find someone to fix his coffee machine and on the way back Alec asked to go to the beach. Well they stormed in the door and informed me we were going, Alec wanted his beach clothes, I knew what he meant but I hadn't seen them since the last time I took him to the beach in February! Finally he settled on what he called cricket clothes and we were off.

He knew the way to get there and was a little anxious when he thought Michael was going the wrong way but quickly settled when we saw the ocean, thankfully we are only 2km from this beach! He was so excited, the look of excitemnet, happiness and elation were marvelous. it should be noted it had been raining and we were experiencing artic winds, it didn't stop him, he ran right in, skipping and dancing through the water, then he stripped off and started laying in the surf still having a ball... I laughed and cried I was so happy.

It remninds me why I do all the EI when I could quiet happily live in a cave than drive to another session,I do it for days like this!

Another day over..

I picked two very happy boys up from daycare. Alec did hand and foot prints with PAINT to make a reindeer!!!!!!!!!!! I was pretty excited, not that long ago he would become hysterical if paint got on him. A good day is a great day for him.

I wish i could make every day an amazing day for him, but as we go through this constant learning curve there will be disappointments and let downs. We do our best though, well atleast the best we can and learn from our mistakes as we go.

Another full day tomorrow, kindy in the morning and speech in the afternoon then we finish off the week with kindy and social skills group. Six more nightmare runs on the way home, 3:30 sessions are so hard but you've gotta do what you've gotta do :)

You must have been really good...

I'm bound to offend someone here but you will have to live with that.. I just read a post about prayers answered (in a private forum sorry can't link you to it), it was about what I would consider things you wouldn't be bothering god with.. notice god with the small 'g' yes, I am faithless and godless. I think it is great some people get comfort and support from their belief but I get nothing from it.

So back to my point, lets say you are right and said persons prayer for a promotion is answered and god really is listening (said in a very Gregory House manner) there is all kinds of arguments here, the whole worthy of gods grace and such but what about the poor people aflicted with a disease or a condition, is god not listening to them because they were naughty and don't get favoured with good health and a promotion? please give me a break, we get dealt a hand, we play it, we decide if we are going to be good, bad or float along in neutrality, for me I like to think I am good, I am moral and kind and like small animals, I loathe organised religion, going somewhere and saying a bunch of words with other people seems pointless. If there really is a god he knows I am too busy to make it but that I am doing the best I can right now, but gee whiz he must think I am naughty because I am being punished by having a child with autism, bullshit, nothing there to see what I do except for myself, I am the one that has to wake up and live with my own choices and I see Alec as a gift not as a burden. I'm happy with that, I hope you are happy with yours too!

Tears

From everyone lately. I just read Fiona Taylor's comment and cried. I know one mum that had cards made to give people when her little one was commented on, I just don't have the energy, when did we start judging and condeming people instead of helping them. I remember one time I was shopping, Riley was in the harness and Alec was walking, he would have been all of two and Riley about 12 weeks old, this wonderful lady came and asked if I needed help. She must have been 75 and she offered to do my shopping with me, I must have looked tragic, I should have said yes. I remember that lady every time I see some poor woman stuggling with her kids and I have offered help, it always gets turned down, I think we are out of the habit of accepting and giving help and are suspicious of those that offer which is such a shame.

I wasn't suspicious of that lovely lady i just didn't want to admit to someone or myself that I wasn't coping and I needed help.

In the last year I have been touched by peoples kindness. One of the kindy mums came up to me one day at the beginning of second term when Alec had started EI and she offered to watch Riley while I took Alec as it was a 2 hour session so over a three and a half hour trip, so she would take Riley home with her after kindy and Alec and I would go off to our session. These are the things that save our lives.

My other lifesavers and my mum and dad, they take Riley on Tuesdays and Thursdays while we have EI sessions, it makes an amazing difference and Riley gets lots of attention, he is going through a jealous phase right now and isn't happy with any attention Alec is getting, with Alec you just have to drop everything and come, go, watch or listen when he calls.

ok the day is slipping away, the boys are at daycare and I have very little to show for myself today. Another thing I need to do, lower my expectations of myself! The world wont end if i climb into bed and read a book or watch a movie instead of cleaning!

Eeyore is home!

While cleaning today we found Eeyore, as you can see someone was pretty happy to have his friend back. We think the cat has been playing with him because where he was found he wasn't on our initial searches.

Grand Day Out

We hit the Waneroo markets this morning to get some fruit and veggies, we had coffee, looked at the pet store and then did the shopping.

I was at the last stall and there were 5 people infront of me waiting to pay and my hands were full, well Alec wanted me to come and look at the puppies again. He came back 4 times, I didn't notice how distressed he was getting and by the time I finally got through and to the pet shop it was too late. He wanted to show me that there were 5 puppies in the cage and that he had counted them, they were all being held by then and Alec was under a shelf in the shop across from the pet store crying and hysterical, then he sat in the middle of the walk way squealing.

After everyone had calmed down and we were on our way home Michael said he was really annoyed at some bloke that gave him a dirty look and made a comment under his breath about not being able to control our child, well I don't even register these looks and comments anymore. I know in the beginning it really bothered me and they would get a filthy look back but then I realised they really meant nothing to me and in my life if you aren't comfortable with Alec you are out, I don't have the capcity to deal with the shortcomings of others. Sounds harsh but when you have to prioritise everything, time, emotion and social events I would rather be with people that care about us as we care about them.

Weeks End

Friday, the end of a long week. Everything seems to escapse me right now, creativity, vitality and drive. One thing I have is a big ole pair of blinders screen my messy house from view, it just feels as though cleaning it would be a waste of time.

So we managed 4 kindy mornings and 3 therapy sessions this week. Alec came through well, complained alot Thursday and kept telling me he didn't think he wanted to go to the centre, we went though and he was fine. So 2 weeks down 6 to go, that doesn't look so bad written down it is playing havoc with my head.

I've tried to do some pages but I just moved things around, it just isn't going to happen tonight so I am off to bed to read or watch The Fift Element for the 37th time, for some reason I can watch it again and again, same as The Mummy and Star Wars IV, V and VI. I probably like watching things because it gives my life 2 hours of total predictability rather than unknown chaos lurking just around the corner.

Day Care

How do you explain to a 3 and 4 and 1/2 year old that they can't take their brand new sunglasses they love because some snotty nosed little gremlin is going to steal them. We have lost a spiderman doll and a spiderman hat that goes with Riley's costume, I begged and pleaded with him where I should have just taken it and pretended i couldn't hear the screams as I walked out the door, but no I let him take it and it was stolen, but I want to know where the parents are in all this, did you ever once stop and think maybe you should retun it.

I'm not overly thrilled with the day care but finally after being at this new centre almost a year Riley finally stops telling people he hates daycare, Alec on the other hand does so well at daycare, i saw him this morning sticking up for himself as they were unpacking the outside toys, he requested a green bike and then some other child said no I want it give it to me and started standing infront of Alec blocking him, Alec got the green bike though.

We have speech and OT at the centre tomorrow then friday start our first social skills session with Chris at Nothern Suburbs Speech. I am having the OT look at Alec tomorrow as he is a bit stiffer and his movement when he runs is jerky, he has had a bad week and this could all be part of it, not processing pain like others makes it hard for him to let us know when something is wrong. Things like sharp pain from a fall or knock really distresses him because he isn't sure what it is.

Well I am having an easy day today, might do some picking up, or I might not! we will see.

A new day

Evenings are the hardest, everyone is tired and nerves are frayed. Morning brings a hope of a little harmony.

Riley has been so funny today, he started the day by taking the stool out to the clothes line to retrieve his spiderman outfit and his socks. It is not a cool day yet he wont take it off, arguing with a three year old is to be avoided today.

Alec went off to kindy on an almost empty stomach, he is very pale and has big bags under his eyes, I am now worried more than I have ever been about his lack of eating and nutrition. We still haven't found eeyore, I'm going to tidy up while they nap and I hope I find him, it is only adding to Alec's stress that he is lost.

A change of plans

What do you do when something in your life changes? not the day to day things as we grow and learn and co-exist with each other but something that changes the future entirely.

We grieve.

We grieve for what was going to be or actually for the possibility of what was going to be and we prepare ourselves for what the reality is now.

I know all the feelings I have are the same for both children, when they are hurt when their feelings are hurt or something confuses them, but with Alec I think I feel it more because in a way I feel some of it for him because autism has robbed him of the ability to pick up and process many things we take for granted. Say you walk in to a room, you can feel peoples moods, from the vibe, their body language and their facial expressions and the tone of their voices. Alec doesn't get any of that. He can learn these things and is learning, but recently we showed him a cross man that was smiling, we could tell it was a cross face and a false smile, Alec just saw a man that was happy.

It has almost been a year since Alec's diagnosis and I still grieve sometimes, not for long though as I devote myself to getting him the best early intervention we can.

So welcome, this is my life, there is always a chance of rain but lots of sunshine inbetween.