Wednesday, August 23, 2006

Thanks to the inquiring public

How can you explain to people what things you deal with, and what things your child goes through.. when they look like there is no issue at all? How thick should your skin become? Things I have been pondering the past few days.

On the weekend, his older brother had an Akido demonstration, (Japanese martial arts) we turned up early, for him to rehearse, stayed for everyone's presentation, and for the medals at the end... around 4 hours all together.

After 1 and 1/2 hours he got very overwhelmed, cranky and lost it... started crying, so daddy took him outside for a bit. He calmed down and came back in and was ok. After another 20-30 min I wanted him to sit next to me for some food. A lady was sitting to the left of him, and had her shoes off and on the floor next to her. Jono was a bit distressed and fidgety, and kept bumping this ladies shoes. After a few bumps, instead of moving to the left, or picking up her shoes and moving them, she protectively covered her shoes and glared at me... /sigh

Then yesterday I wanted to get some sandpaper from Bunnings, so after picking him up from school, we drove through Macca's to get chips. This was an issue.... we don't go Macca's very much, and when we do we usually stop and play. So he broke into tears, and started panicking - 'this one, this way, turn, play '... and so on. He calmed a little so I decided to brave Bunnings, and thought he could go in the playground there. He was very very sad when we stopped, and didn't want to get out of the car. I got him out after a few minutes, and he didnt want to walk along. I got him into the store (still crying and panicing... but I thought I only want one thing, we'll be quick) I took him to the playground to give him a chance to play... but by now he had no interest. Then we found the water fountains... and they has rocks around them - this provided much joy for quite a few minutes.

After he had calmed right down I thought he would be ready to move on, and tried to get going. but he just couldn't cope... the routine had been broken and he was just too out of sorts... so I decided that the stress on him (and me) was not worth it and went to the car. As we loaded up a man came past and made a comment about Jono being tired... I said 'No, he's autistic, and this is out of routine and he's not coping'.

He was literally screaming the store down, people were looking at us, and I'm sure more than one thought 'what a bad mother'. Ahhh just one of those days.

Pack up Time

He has recently (for about a week now) taken a great liking to this phrase. He uses it a LOT, at some times it seems reasonable for the use.. at other times, just plain out of sorts.. I'm not sure if he just likes the sound of the words, or has a hidden meaning to them.

I took a video of him the other day in this mode, he is doing pacing on a trail in the front yard, while his brother and sister play in the background... he gets distracted by our cat 'Abby', at the end.

Friday, August 11, 2006

Come into my world

Today I took the boys to a playground near Jonathan's school, and it has a fantastic flying fox in it... I can vouch for it being fantastic as it can handle adults :)

So Daniel took first turn, and had about 4 goes, then I said it was Mummy's turn, so I had a few goes then called Jonathan over saying it was his turn. He had a few goes, then I said it was Daniel's turn again - so Jonathan, in sensory mode, goes to the middle of the path and waits for the flying fox to come careering at him so he can then fall down in a pile of jelly as soon as it touches him.

He loves doing this, if we have marbles or a powered toy car, he will go to the end of the hall and lay with his head on the floor waiting for you to throw it directly at him, giggling madly as he gets out of the way at the last minute.

So.. after Daniel had a few more turns, I said it was Jono's turn again, and Danile said that it was his turn to stand in the middle and wait for the flying fox to come at him and he would fall down. Jono loved this. Not only was his big brother sharing, but he was doing what Jono likes to do.

After a while they they went to the helicopter (that you climb into and have to pedal to make it turn), they couldn't get it working at first even though both had a go. Then Jono went elsewhere and Daniel managed to get it going... so he Called to Jono "Come, come"... Jono wasn't ready just yet and kept saying "No!". A little while longer and Jono did go to his brother, and climb all over the helicopter, when he was slipping Daniel held him and helped him up on top, then made the copter turn in circles with his brother sitting on top of it.

It was very special to see them really enjoying each other's company (tho they usually do) and more so that they were taking turns, and Daniel helping Jono, and being involved in the things that he likes, even if they do seem a little strange.

Friday, August 4, 2006

Its a really, really, really small world

I started this blog with the thought of getting some more people I could talk to who perhaps understood some of what I was facing and going through with having a special boy... and to give me an outlet to be able to talk about what I feel.

Since starting this I have found people near me in physical location, as well as people I have known for a while in different places. I play an on-line computer game, which is fantasty based, and have been a pink-haired gnome for a while in one of the locations, 2 of the players in that location, while across the world, also have kids who have either asperger's or autism.

I have also had a friend at church who has a friend who has a child who is autistic get in touch with me this last week, and her little girl is a year older than Jonathan, but she 'knows'where I am coming from about stuff. I have also started doing step classes at the gym, and just found out that the trainer there has a boy who has aspergers, who is 11 years old... and who's name is also Jonathan.

Then... one of his teacher's aides at school has a son who has aspergers, and he is 18... and one of my long-term friends has a boy who is great friends with our older boy who is starting down the diagnosis trial for apergers. I truly am amazed at just how many people there are around me who actually have some understanding of where I am at, and that we can be a support for each other.

The most encouraging story for me out of these recent people is Jono's teacher aide. She was telling me things she does to help her boy to be able to calmly and appropriately behave and interact, and counting seemed to help a lot, and she counts with Jono... eg, Sit on the mat ...1 ... Cross your legs ... 2 ... and rarely does she need to go to 3, but 3 is him getting taken outside and missing out on the class activity.

But anyway... her son, who is 18, at Jono's age was also pretty much completely non-verbal, just like Jono and had did lots of rocking, where Jono is more a pacer and a flapper... is now a university student doing a double degree in IT and secondary teaching, then he plans to do a degree in Law. May I just say... WOW!! What a great hope and vision for Jono's possible future.

I am also a little stunned by all these people at this particular time of my life, but I am sure it is because I am ready. I have grieved, I have turned to chocolate for comfort (and gained 20kg's), I have gone through disbelief, shock, anger, denial, guilt and so on... and on some days those feelings can come back, but for the most part, I am moving forward, I am gaining confidence about Jono's abilities, and realising more and more a lot of it is really not in my hands anyway. One day at a time, being grateful for what I have.

School Excursion

Well, we had our first school excursion this week, a walk to the local shops approx 500meteres from the school, to talk to the shopkeepers and see how to pay for things and stuff like that. The school asked for parent volunteers, and after explaining to the teacher that "Literally, Jonathan's life will be in the hands of whoever walks with him," I was put in his group.

Unfortunately, due to the lack of routine about the excursion, it was difficult for him to understand what was going on. Usually, I drop him to school, and then he doesn't see me again till the middle of the day when it time to go home or go to Special Ed Classes. On the day of the excursion, I dropped him off, took his sister to day care then came back. He didn't see me for a while as they were busy getting ready to go... once he did actually see me, then we had some troubles.

Firstly he wanted to go to the car.. we tried to explain we were walking but that didn't make sense, then we said we will go shops.. and he was happy with that, but couldn't understand why we couldn't go in the car.

He walked, begrudgingly, complaining, crying and distressed halfway up the first street and got a piece of the [GF and CF Free] chocolate bribe. He kinda calmed a little, then continued walking and sobbing to the traffic lights, we went round the corner and part way up the next street and then decided it was too much for him... he was just so out of sorts and out of routine/comfort zone.

So we went back to the car and drove the 500m to the shops, he kept crying and was uncertain until he saw the other kids and the teacher aide... after a minute or so we got out of the car and joined his group. We went in 2 shops and looked at what they sold, the other kids drew things, and we had some money to hand to the shopkeeper to buy some food to take back for morning tea.

He got a little more distressed in one of the shops coz we were there a while, but after more bribe food we went and sat outside for a minute. We drove back to the school and had morning tea there.

If he was just a little older, I may have been able to explain it better to him and he may have understood better, if I had met him at the shops that may have been better... but I know him and his complete lack of understanding about roads, and wasn't willing to let him walk with someone else just yet. But you know what.. he went... he got to go on an excursion with his schoolmates, and that's a wonderful thing.