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.

Horrified!

Yesterday we went into to the city to do some late night shopping. I stopped off at Dusk and Michael took the boys to window shop at the model shop. It was really busy at Dusk, right away a girl went and fetched me a basket and helped me find what I was looking for then when I had all I wanted I went and stood in line behind 2 groups. The front group consisted of three tarted up looking young woman who were the rudest people I have ever encountered, in bitter loud voices they yelled out.. are we getting any service, we have other shit to do you know by this time my jaw has dropped to the floor, what common nasty little tarts they were, honestly they were there a few minutes, they weren't going to pass away, what in the world were they thinking when they decided to treat the staff like that????

On a high note Alec was fantastic, he held my hand all evening, he is having a little bit of separation anxiety at the moment so I think when I said the "lost" word he was happy to hold my hand and stay close, Riley on the other hand whined all evening so that was a bit hard. All in all it was a pretty good shopping event

except for the awful girls, I just don't get that type of behaviour, it is one thing to express disatisfaction with service but that was down right nasty and unnecessary

Transition

5 more weeks of early intervention.

In a word, ok in several words I am nervous, apprehensive and a bit afraid. The centre have been part of our lives for 2 years, and such a big part too. Starting grade one is huge, I know he is taking it all in his stride, I just can't help it. I want everything to be amazing for him, I know this is unrealistic on my part because I know it wont be. In so many ways he will be just fine and in others I know he will have difficulty. I am thinking of setting up a reward system for him and get some work books to do over the holidays. Fine motor is still a real problem, there has been very little improvement in his hand writing and he avoids colouring in and drawing.

I am feeling a bit isolated, no one really wants to know what it is you do to get through the day with out meltdowns and catastrophes happening and you put on the coping face, I'm not even sure you could explain, it isn't as though you know anything else, this is your life, and how do you explain that is can simply be something you say that triggers it... so we say.. yes we are great, things couldn't be better, just after you got home from the shopping trip from hell where your child squealed and ran the length of the shopping centre, then screamed and fell to the floor when you refused a request and some interfering old fool makes a snide comment about how your child is behaving. I know now that I am very tired my patience is wearing thin and I am a bit snappy. I try so hard to keep everything going smoothly but sometimes he is unreasonable and I can't just drop everything and give him 100% of my attention. I know he doesn't understand and that what he has to say is the most important thing in the world at that second, how do i say, well Riley was showing me XYZ you are just going to have to wait, it just doesn't wash, but I can't say sorry Riley step aside, he is only 4. Riley is right into performing at the moment, it is very cute but I think Alec feels a little put out by it and trys to butt in and we end up with a shouting match between the two of them, followed closely by tears.

Add to all of this the inability to keep the house looking even 1/2 way decent, if you read my scrapping blog you know I have a huge pile of laundry to fold, it is still there, some of it even has moved to the lounge room, I was going to fold it last night but I am so tired by the time the boys finally settle that I hung out my 4th load of washing for the day then fell into bed to watch tv in there, I select my clothes from the line for us each morning LOL.

Alec comes first, then Riley and Michael.. house 5th or 6th... well 52nd if you want to know the truth. I feel guilty because I make time for myself but not for the cleaning. I am at that breaking point right now I could easily sit all day staring at the tv or a blank wall. It is hard living day after day trying to anticipate someones needs and dealing with him when the world caves in on him.

I will end this with saying I would do it all over again, even try to do a little more. my boys are so precious I would do anything for them. With Alec my biggest fear is I haven't done enough. It is ongoing, forever which can be a bit daunting but I know what we do now will make him more able to cope and lead an independent lift, as long as he isn't in too much of a hurry to grow up. These guys are my world.

What did you do today?

This is a question I have asked Alec almost every day he has been to school or daycare. last night was the first time he has ever told me. I was thrilled and amazed by the whole experience, to have this type of interaction with him removed much of my exhaustion, some of my worry, made me feel a little less afraid of the future

What did you do with your new therapist at centre session today?

Who??

Candy

Oooooooooo

Well Candy got the parachute out, and we did a new chart, days of the week

and what day is it today?

umm I don't know..

tuuuuuuuuu

Tuesday!!!

what other days are there?

I don't know.. wednesday, thursday, friday...what are the others?

there are 7 days in a week.. Monday Tuesday, Wednesday, Thursday, Friday.. and mummy's favourites, saturday and sunday!!!

so did you do anything else?

yes..in the jungle room I tried to get in the car.. but my bottom was too big.. giggles, you know the car turns into a snake and an elephant, and I did a lion.

For snack Candy came out and sat with me and Bryn, I had a little of my polony sandwich, but didn't have any of my sultanas or up and go

is that was you were hugry when we got home?

yes i think so.

Thank you so much for telling you me about your day

that's ok mum, tomorrow when we have our lie down cuddle I can tell you what I did tomorrow

mealtime management

lots going on, I've just finished 2 days of training at the autism association. Day one was transition to grade one, that was full of information and strategies for making everything go smoothly. Day two was our first mealtime management meeting. This is the beg one. This will bring a lot of changes, changes I have to implement and follow up and do, me, me me me. Wouldn't it be great if someone else could come and do this for me, but no.

I have spent the last two years searching for ways to encourage Alec to eat. He has a very limited diet and can't sit still or stay at the table. So starting from the beginning we will be changing where the boys sit, I will put them both through the program. Our first goal is getting Alec to sit at the table, I will start with an egg timer, use a first and then board... first sit at the table and eat your dinner... then you may play a computer game. Then we also have to do sensory exercises, brushing, squeezing, joint compression and trampoline every two hours. This reduces stress and has a calming effect.

First I am enjoying my last three days of holidays before I start this.