some good things to read

I'm tired of being assaulted by controversy every time I read an article about autism. They are written by people that are just reporting a story and have no connection to anything or anyone with autism. We only see the sensationalism because that is what people want to read and those people being sensational make a lot of noise. Many more of us spend our days living with and loving an autistic person. I would not change my child for anything, even though he has been upset with me for the last hour because it isn't 10am yet and he can't play age of empire yet. Apparently he is packing his soldiers up and going to grandmas, the fact that he can convey this to me is fantastic, he is rather cross and we are having lots of little talks and back rubs but I can see it going until 10am when I turn on his computer.

I also know I will give in as soon as I have finished this because I hate to see him upset and even though he knows the 10am rule, he is still only 6 and 10am must seem like forever away.

So today the first day of the holidays and I am following blog posts and articles about autism by the autistic. I want Alec to be at peace with his autism when he is an adult and with information like this we can only get a better understanding

This one I love -

Autistics Need Acceptance, Not Cure An article critical of "autism awareness"

Don't mourn for us an article about the autistic child in our life, it may seem a little harshly written but I have come across people like he is talking about.

I admit I went through a grieving process after Alec's diagnosis but you can't do that for long because it was my job to make sure he got as much help as he needed, I am his advocate. I realised about a year ago that we could give him the tools to communicate and help make his body stronger but we could not expect him to understand our world, it is a different world, so what we have to do is make the effort to understand his world.

Aspergian pride advocates recognition and acceptance of the autistic community as an intelligent, competent minority group with many worthwhile qualities.

but they are depending on me

What a thing to hear from a six year old. Alec is sick today, he has been coming down with something for about 10 days now and it finally arrived today. He was meant to me man on roadside with palm frond in the school assembly passion play thingy.

When I said he couldn't go to school he cried and told me he couldn't let down his buddies they were depending on him and he would miss them, we dried the tears and then the alternatives started... maybe if I get another piece of material and put it over my mouth the germs wont be able to come out, isn't that the most gorgeous thing you have ever heard. We still took a photo, the poor thing looks so pale.

The last 2 weeks he has had a few issues at school with noise, he describes them as headaches. What we have arranged with the teachers is a quiet time place, I took in a bean bag and now he has some music to play with headphones while he takes some time out. Some days this has been up to 4 times. I'm hoping with the easter break he gets a good rest and beats this cold fluey thing he has. Hopefully we all recover, every member of the family has a temperature today.

play dates at our house

one of the hardest things to master for Alec is social situations. We have friends we have visited regularly over the last few years and over time he has set up his own set of coping mechanisms and rules, but things like play dates after school at our house are a disaster.

Firstly he gets amazingly over excited and over stimulated, he hasn't quiet got the whole guests get first choice thing down yet or that you don't watch tv when friends come to play, but I suppose if you are hiding under a blanket in front of the tv is a good a place as ever. Thankfully I had Riley here as back up. Alec did play a little but he was too unsure what to do, he has that desire of every six year old to impress his friends but this means very raised voices and everything being dragged out from everywhere, but that is play.

What is most frustrating is that he is usually fine when he goes for play dates to other peoples houses. I want to be able to help him with this, I want kids to want to come here to play after school, after all I do a pretty good afternoon tea.

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

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!

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.