Strange Hurts

Last Sunday at Church, he needed to go to the toilet before church started. Nothing unusual in this, he knows where the toilets are, he can toilet himself quite well now... so off he goes.

A few minutes later the cries of frustration start ringing out... so I head in to see whats wrong. He's standing at the bowl, but nothing is coming out... I'm not sure if he has allready done anything, but he is very distressed.

I went and got hubby to see if he could encourage him to go... a few minutes later I head back and nothing has still happened, and he is still standing there frustrated. Daddy has to do some things, so he heads out.

30 minutes later of sitting on the toilet floor next to my distressed crying son, I am thinking to myself... why do I bother going out, why bother trying to get to church, if I spend the time in the toilet there is no point in coming... WHY is my son Autistic?!?!?

There are moments of clarity I get about our situation. I've heard Autism called 'and invisible disability'... and they are right... I can't 'see' anything wrong with this child... yet there is so much 'wrong'. The brain synapses don't connect in the usual fashion, the world around him is a foreign and sometimes scary place, seemingly simple things can get out of control easily. Yet it is no-one's 'fault' not his, not ours.

It just is.

And yet, it is not the sole controlling factor of our lives... and I should not let it be in that place, even if on some days it seems as though it is.

Birthday Jumping Castle (sisters)

Well... his sister turned 4, and we finally had the Jumping Castle Party we have been talking about for 6 months.

*Note: Jumping, outdoors, trampolines, all these kind of things he just LOVES*

When the castle turned up, Daniel and Sarah where fascinated, watched every second, where almost on the castle before it finished inflating, and squealing with joy about every small thing that happened while the pump was going.

Jonathan looked at it and cried.

Then he squirmed to get out of Daddy's arms, ran inside and closed every door possible between him and that 'thing'.

We let him calm down, then I took him out and forced him on and made him do a few jumps (squirming and crying the whole way.) I let him go and he hightailed it indoors again, closing all the doors on the way... so I took him up for a bath.

After some water play and calming down, Daddy took him on... and then we couldn't get him off.

New things are scary for most of us... and the fear can often overtake to the point of the irrational (he's never closed so many doors in such quick succession) but I'm very proud of him for facing it, overcoming it and loving it... we are thinking of getting him one for his party next year now :)

Sleeptime Troubles

I don't know how many of you have troubles with getting your kids to get to sleep in the evenings.

As far as I know, most Autistic people either go to bed really late, or get up in the middle of the night and do stuff - just restlessness... I'm not quite sure why.

Jono used to have dance parties in his room from around 1am to 3am, in the house we are in now we have wooden floorboards.. so that makes things very interesting of itself... we also put a lock on the outside of his door, for safety. If he was up at 3, and went into the kitchen and accidentally put the stove or oven on, our house wouldn't burn down.

Anyways... he's grown out of the dance parties now, and just has trouble getting to sleep, most nights he doesn't crash till around 10pm or so, even tho he gets put in bed 7:30 ish. He's usually up around 7:30 am... so I really don't know how he is coping on so little sleep for his age.

Tonight, he got put in bed at the usual time... I checked on all the kids about 20 min later and both his brother and sister were snoring, but he was still pacing in his room. My hubby and I settled in to watch a movie, and when the movie finished I went up to check on the kids. Jono was not in his bed.. nor in his room... this was very unusual, so I started searching.

I didn't have to look far.. his brother was on a mattress on the floor tonight, and I found Jono on his brothers bed... and as his brother and sister share a room it was very sweet to see all 3 in the one room... awwwwww shucks :)
Now just to get him to actually get to sleep a little earlier ;)

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.

http://www.youtube.com/watch?v=CnJSUAsw36I

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.

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.

Plants do not belong in pots

Just a view of things I have noticed that 'make sense' to Jonathan... or perhaps make him feel good.

For myself, when I was a child, having a drink of milk... more particular flavoured milk, could only be really done in one way to truly savour the experience. The cup has to be plastic, kinda thin, and fairly tall. The mixing of the favour has to be done with a long spoon, and then the same spoon must be used to drink the drink, one spoon at a time slowly sipped. It is better again if you are sitting on a couch with your knees bent up around your ears. Since becoming an adult, the knees around the ears are not so important, but flavoured milk still tastes best from a spoon.

Jonathan seems to have similar feelings about certain things, and I just wanted to share a few. People who see me drink milk think I am odd, but it brings me comfort (the same as eating a meat pie... crust removed first, then eat the middle with a spoon, then eat the bottom.) the things that seem 'normal' or 'make sense' or 'bring comfort' to Jono seem a touch more abstract than these, and I hope he may choose to explain them to us better in time, even if just to give us a smile.

The Television.
It cannot be turned on or off, have the channel changed, or have a movie started while I am in the room. If any of these occour, I will rapidly exit the room through the back door, or up to a bedroom and close that door, or head downstairs (or on odd occasions complain about the change saying 'finished'). Once the show has commenced and I am comfortable about the change that has occoured I will return and watch it.

Car Travel.
If I am in Mummy's car I must sit in the front passenger seat, (unless 2 adults are in the car which I will sit in the back) Toy Story Number 2 must be in the CD player ready to play, and I will turn it on before I sit down. The volume setting is to be number 11, and I will adjust it accordingly myself... no... I dont need your help.

The Fridge
I will happily raid the fridge and (most times) take apples, carrots or other fruits. I will usually eat 3/4 ish, and leave the other 1/4 on the floor... what rubbish bin?

Pot Plants
Plants do not belong in pots, on the odd occasion where mummy brings one home, I help her by removing them from the pot by bashing, grabbing, turning upside down, and often leaving the plant on the front pathway. More recently she brought home 2 plants, 1 I took all the leaves off the plant first before taking it out of the pot, the other one I removed, took the plant and the pot to the back stairs, turned the pot upside down and put the plant on top.


I was thinking to myself the other day... one day Jonathan will read all this... I wonder what he will think of what I think of what he seems to be thinking. Although really I am writing more for me... to be able to voice how I feel, and to find others who may understand me some :)

All in the family

First, a little background of the location. Our church rents a hall, that is located next to some office space on the edge of inner city, on a very busy main road. In the past we have had Jono run straight at the road oblivious to traffic, and been able to catch him literally 1 foot away from the oncoming cars. We stopped taking him to church for about 6 months after that, as his comprehension and ability to stop when told wasn't great at that time.

He is much better at understanding and obeying now, he is older and comprehends much more, though streets are cars are still a big fascination.

Today.. he disappeared for a few moments (as he often does), so I looked in the usual spots. The boys toilets, the offices, checked the gate to outside... and couldn't find him anywhere. I grabbed my husband's arm and said firmly "Help Now" (at the time we were having lunch and his older brother was sitting acroos the table and saw my face). We found him.. UNDER a table in the other corner.

About 10 minutes later, his brother came up to me and simply said "I'm helping Mum". He then told me that he saw my face and how worried I was when I thought I'd lost Jonathan, and he wanted to help me to keep an eye on him so we don't lose him.

There are times I worry, what if I die young, who would take care of my children, and who would have a chance of understanding Jonathan's needs. Today I was shown that there really is small need to worry, because there is someone there who really tries to understand and cares. In thinking, his sister also spends a lot of effort in guiding and directing Jonathan. So really.. we will die one day, and it may be young... but he has people who will be his helpers, as best they can. *warm fuzzies*

Any response is a good response.

The other day Jonathan was in the backyard (his favourite place) and I needed to get him ready to go out, So I called for him, saying 'Jono come... time to go in the car', usually, I just call a few times until he starts coming to me to get ready to go, and he will often echo back 'come' or 'car'.

This time.. after a few calls.. he practicially yelled.. WHAT!!?!?!?!

I have never been so excited to hear a child talk back to me. I've told a few friends, and we all agreed, any other child would get some discusion about the right way to respond, for Jono, it was just exciting that he responded at all.

School Holidays

Well, it's been a little while, we've been busy! Painting - brave or foolish.. 3 children, mutliple paint pots and brushes; crafting - making a dragon out of egg cartons; stuff around the house, and an overnight stay at a hotel.

Jonathan has had a bunch of foods he really shouldn't ... and is actually coping really really well with it.

When we went away overnight, we went to a hotel that was catered for kids... playrooms where you signed your kids in for activities and stuff (and a playgym and pedal go-karts) , outdoor play gear, and 5 heated swimming pools!! We actually went swimming in the middle of winter.

However, the highlight was Jonathan and the ocean. When we arrived the queue to book in was too long, so we went to the beach to go for a walk for a little bit. Jonathan tried soooooo hard not to go into the ocean (which just a few short years ago he was frighteened of)... but failed miserably after a while.

We saw some antics that inched him ever closer to the water... trials in the sand on his bottom, prancing, but the draw of the water was too much. One minute he was at the edge, the next a wave crashed over his legs wetting his shorts.. the next a small red jumper crashed down into the icy ocean.

He loved it, and froze to pieces in the cold cross breezes when we pulled him out again. We let his older brother go in as well, and amazingly neither of them got very sick from it. We stopped his little sister going in, and she got the sniffles for a week or so after.

I'm not sure what the big drawcard is about water play for him... not just swimming, but play.. he'd watch a tap turned on to a trickle for hours if we let him, and just watch it over his fingers, rocks, spoons, whatever is close handy. It must just be soothing to some extent, or maybe those cogs are going at 100 miles an hour figuring it all out. One day he may get around to telling us (says me - water baby from her youth... maybe I do have an affinty after all)

Water, water everywhere!

Jonathan has been getting much more into water play again athe moment... it's just a shame that its winter here and he has a chesty cough.

Anyways, he decided that the upper floor of our house needed a water feature... so proceeded to pour 2 litres of water onto the couch... it seeped through the couch, the floor boards, the lining... and through a light socket in the downstairs roof.

The waterfall was quite spectacular - albeit dangerous - and after a mad scurry for towels, and leaving the light off overnight, downstairs dried quite nicely. He was somewhat shocked when he came downstairs and saw it dripping through the lightsocket.

Yes, he did get a smack on that one, it's just too dangerous to have him doing that on a regular basis.

It's funny though, he just wanted to put some (read: a lot!) water on the couch... no idea of consequences... I don't know if he really understands now either... but the couch was in need of a clean anyways :)

Writing

Today I found in Jonathan's school bag 3 pieces of paper with his name on them... one was tracing over dots in the right shape, the others freehand.. they were very child-like.. I'm not sure if he did them himself, or if he had someone holding his hand and directing him - I shall find out. [Edit: he had help to write them.. but he really understands that a 'J' with some scribble after it is how to write his name ]

But.. I showed them to him and praised him on writing his name.. he was well pleased.

I get amazed at times by his progression, it seems to 'normal' and at other times it seems so restricted. Some areas he functions exactly like any other boy or girl his age... and there are some kids in his class whose language is almost as restricted as his, yet have no special needs.

It's so hard to gauge just what he is learning and understanding.. at times it seems like he knows everything around him, he just doesn't want to tell us about it. Other times he is waaay in his own little world and its hard to break in... is he simply daydreaming...? I honestly couldn't tell you.

Oh, and this winter's big news.. he is actually staying under his doona, last winter it was not something he wanted and we just dressed him extra warm and hoped for the best.

With his often restless nights it seems to be getting harder and harder to get him out of bed now in the mornings... especially when the doona gets ripped off him, and he fumbles around for it then drags it back over his entire body like a cocoon.... toooo cute!

Food Glorious Food

Well.. I said a while ago that I would talk some more about food, and last weekend we had a couple come to dinner who has an Autistic child themselves, and we ate as well as discussed food :)

For a lot of kids with Autism, diet is looked at with the recomendation of Gluten and Dairy free being good as theit bodies cannot cope with certain things in those foods, and the nutrients don't get digested as well and blocked from being sent to the brain, so brain function is more difficult.

For us... they make a BIG difference.

When he was 2 and 1/2 we went to a Hungry Jacks (aka Burger King) with some friends... we had just recently reduced his diet, except we still let him have cheese, coz he just loved it so. It was HARD, he couldn't sit in his own chair, tried to steal food off other tables, and wouldn't play in the playground.. I think we lasted 35 minutes before giving up and going home.

We decided then to take him off cheese and just see. Two weeks later we were at the same HJ's, and he sat in his chair, ate his food, and played happily. So... we gave him an icecream as a treat, we were so pleased. He spent the next 4 days under his bed... quite literally - he just could not be with us or be at our level.

Then we have gluten. At day care last year he had a bunch of specific 'free' foods just for him, which was wonderful. However, one of them thought we were wanting wheat free and preserrvative free.. so got a rye bread especially for him (GLUTEN!!!). We were not aware, and in the two weeks they gave it to him (only 1-2 pieces every other day) he regressed massively in multiple areas of his life. Socially he stinted, words dropped off, and he stopped going to the toilet in the toilet... we were back to him doing poo's in the back yard, as he could not cope with sitting on the toilet... it had been 6 months since he had done that! Once we found the culprit and stopped it.. it was about 2 months before he was back to the stage he was prevoiusly at.

Mind you - being completely GF and CF free these days is possible, there are so many foods available - soy products, tofu cheeses, goats, rice.. etc. But we find it hard still - with 3 kids, parties, friends... so we aim for 80% plus.. and then don't get stressed if he has something he shouldn't... coz if we were too focused on it, it would truly be a burden.

So... if any of you have heard of these things for your child... please try them.. just give it 2 weeks and measure for yourself, then make you own decisions about continue... coz habits are hard to break, and good habits can be a challenge to get into :)

(Says me who hasn't been to the gym in 5 days ... ooops!)

Pointing : Stage 2

Well, the pointing has given Jonathan such a new lease on life.

Wanting to take full advantage of this stage I ask him to direct us when we are going in the car to and from the Special Ed unit. He points and I ask "Which way?", and he now actually replies with "This way" rather than just echoing me.

Unfortunatly, we also had a meltdown about the car not going the direction he was pointing.

He Goes to Special Ed 2 afternoons a week atm, and on a day he wasn't meant to go, he really, really, wanted to. So as I turned the car towards home, he started crying out "this way, this way, this way!!" and pointed in the opposite direction. I said a few times " Home today" but it didn't get through... after all, he had the power of the finger!!

Being only 700 metres to school it wasn't a long trip, and once I got home he continued in his frantic requests. I unbuckled his seatbelt, and he didn't want to get out. I kept trying to coax him, but he just wanted to go... he even crawled up on top of the dash board pressed himself into the windshield and kept trying to point and say "this waaaay!!!!"

After quite a while he got out of the car, but was very distressed. He went to the side of the house and sat amongst the path with the pebbles and started putting them into a container and out again. He just needed soemthing tactile. He then had a few other things happen that also distressed him and it ended up being about an hour before he calmed down. :( poor boy.

The next day was a day for special school, so that seemed to make things a bit better.. the power had returned! I think he's just testing his boundaries again.

Today tho, his older brother (who is 7 1/2) asked me "when is Jonathan going to be unautistic?". That was a big conversation, with a few tears on both sides, mine mostly when Daniel cried saying " but I want to talk to him." Ahhhh we are all growing through this experience.

LOOK !!!!!

With a flourish of a finger, and a joyous phrase, we enter a new phase for Jonathan.

In the past few days, he has started pointing, with his finger at various things that excite him. Tonight it was the 'Wombles' (old BBC tv show) Dvd playing on the TV. He ran up to the TV, pointed at it and almost shouted in excitement.

"Erm... most children point at things" I hear you say. "True", I reply... "most children do, usually from as early as 15 months". [By 15 months most children: Walk without support, say a few words in addition to mama and dada, move arms and legs to assist in dressing, wave bye bye, communicate by gesturing and pointing, finger feed self, and begin using a spoon. http://www.laxfamilyresources.org/child_development.htm]

We are at 5 and a half years and just now seeing some consistency with some of the basic developmental abilities for most children - of course, it delayed due to it's relation to the social aspect of life.. the constant 'boundary' for autistic people.

And just looking at that list I linked, he walked at around 14 mnths, had maybe one other word than mama and dada, rarely assisted with dressing (from fuzzy memory here.. never really took notice on when that changed.. perhaps at 3 yrs-ish), he was waving bye-bye occassionally, which inadverntandly stopped at around 18mnths for perhaps around 2 yrs, and he had no problems feeding himself :) .

Also... another delight, I have yet again to thank the makers of 'Toy Story'. I purchased a CD for the car, basically a script from the movie with a narrator over movie voices. A month later... I had tried a few times to change the CD, but he always refused... only that one would do.

This morning, as we arrived at school... he held his hand over the on/off swicth so I couldn't turn it off, I waited for him (while his sister also got her shoes on) and after around a minute the bit he wanted came on... he then proceeded to amaze me by repeating 'word-for-word' around 6 sentences from the script, in time with the recording. Not just a few words, but almost a full paragraph. (of course... it's echolalia, it's not him saying a paragraph himself... but that definately will be coming!)

Things like this just give me hope for him for the future.. I have no real gauge to measure him by. He is his own man and developing in his way, I don't know how much language he will aquire, how well he will read, how he goes with maths... I see high school being especially difficult for him - let alone the adult world, and besides, we have grade one yet to tackle. {Moderate sigh}

It's too far ahead to be looking in some ways, but it also helps us to be better parents to our other kids. Be YOUR best, do all YOU can, excel with the gifts YOU have... fair advice I should be taking for myself too ;)

"Mum, look at this"

About a week ago now, we were at the computers... The two boys on one computer, and me on another... when Jonathan says, clear as a bell "Mum, look at this".

He was holding up a piece of dirty paper.. and wanted to show it to me.

The amazing things about this were:
HE initiated... he chose that he wanted to tell someone something - and in this case it was me he wanted to tell.

He had an objective.. for me to look at the paper.. and HE chose the right words to achieve that.

He spoke a sentence... with no prompting, modelling, initiating, he just ... spoke.

Wow!

Just a quick definition

After writing that I have a disabled son, I thought I should clarify... most of my friends and family would be likely to say - no, that's not disabled... he is able bodied, and smart as a tack.

Which is true - he is. His dexterity and love of climbing has been the cause of concern on many an occasion - 2 storey house are very interesting.. but we worked on that, he has trees he can climb in the yard, and we made a tree house, as well as a baby gate on the outside of the stairs going to the balcony, and some netting under the edge of those stairs - it all helps :)

And - he is smart, he knows exactly what you are talking about most times... you can tell, by his behaviour, and that cheeky smirk that often develops when he knows he's pushing the boundaries, he also has great interest is stars, the universe, words, and other things.

However, what I am referring to, is the fact that he will need assistance, probably for most of his life. Assistance in getting ready for a day, in achieveing, having direction and focus. I know a lot of that could be for any child, but let me explain. He is currently at prep, the year before grade 1 at school. The first term of school her had one teacher assisting him get into routine, so I wasn't really aware of how involved it is. At the end of the first term, I was asked to come and help as that teacher won't be available for the hours she was previously doing. Because, for example, he has trouble in the routine of sitting and listening to a teacher... if it's not directed directly to him, he would prefer to get up and pace, which disrupts the rest of the class, and he has tanty's about not being allowed to do what he wants... coz at home, there was no rigid defined structure.. he has lots of freedom to do whta he wants when he wants.

For him to do a simple activity, like a collage... he needs someone sitting next to him, to help him cutting, to show him gluing, to help him focus, and to help him stick the things down. I did this at home the other day - his 3 yr old sister was fine... he needed the assistance, because he was more fascinated with how the glue had little bubbles in it when you squeezed it onto the paper, then actually putting something onto the glue to stick it down. Now really - it was interesting what he was doing, but not the object of the exercise... and so it will be that way at school, and so he needs assistance, and so he is not capable... and so disabled (or perhaps unable would be better?)

Whatever the case... it has really brought home to me that he has extra needs, and we as his parents need to seek ways to assist him to get those fulfilled, without impacting too much on us, on our capacity emotionally, on our capacity of time for each other, and for the other children... and you know what... I think we will likely get the balance right 1/100th of the time.. the rest of the time, it's purely grace assisting our family along.

Some of the 'facts'

Well, after finding out we had Autism in our family... we went 'researching'.. and very quickly got overloaded, there is LOTS of information about this condition.

I always boil it down to simply, a lack of ability to socialise. Of course - it's a heck of a lot more involved than that.. but that's the nutshell I tell people. In that nutshell come behaviours, things people may think are rude.. yet to someone with autism, it makes sense - why do I have to look you in the eyes? I can hear your voice without that - yet 85% of our communication is by body language, and facial imagery.

I recently came across a story of people researching human faces and gestures - they came up with approx 3,000,000 various faces - most of them non-descript / silly / pulling-a- face, and boiled it down to 3,000 definitive expressions that show emotions and what the other person may really be feeling - including the 'micro' expressions that are on someone's face for 1/10th of a second, but show how someone really feels... scared when trying to be brave... 'poker-face' when trying to lie.. etc.

So, to someone who can't 'read' faces... and doesn't want to necessarily look you in the eyes all the time - how much are they missing out in communication? Tonnes! No wonder they have issues socialising.

From another site "Autism is a neurobiological disorder that affects social connection and intellectual comprehension, becoming apparent by age three, although many people are diagnosed years later. People with autism have unusual and repetitive behaviors, and absent or peculiar speech. They’re often plagued by sensory overload, during which competing streams of thoughts, sounds, lights and noises flash simultaneously through the brain. It can be like living in a casino, multiplied by fifty. It has no known cause, and no cure. Autism is a spectrum disorder, ranging from mild to profound disability."

This word has only hit home in the past few days. For the past 3 years, I've been living a life of someone who has a child who is fairly normal.. just a little delayed (he's 5.. and we have yet to hear a full setence from his lips... he can just put 2 words together comfortably... only recently do I have any idea of what his voice may be like... for up until now, it's been mostly babble, and the occasional favourite phrase 'To infinity and beyond', thankyou the makers of Toy Story - we have a common ground for our son.

So... I have a disabled child - brought home more clearly to me from the fact that he isn't coping with a full day at pre-school, and they have asked me to either cut his days, or come and be a support person for him in the school grounds. At first, the 'I will do anything for my child' came out - of course I will support him, he needs to be here for the best chances for him for socialisation. Then came the 'I need as well' - I need my space, I need my time for me, I need some time without my children... I am swamped and overwhelmed.

Then came the acceptance 'I have a disabled child'... me... I personally have a child who is not able to do things other children do, who cannot manage a regular routine, who cannot focus, who needs assistance to get through a day. Then... gratitude 'How many other parents get asked to come and spend more time with their child by their school?' Seriously.. its a responsability and a thrill. Of course.. if I hadn't been retrenched in the beginning of the year, and allready working from home part-time, we would also be faced with the 'one of us needs to be at home full time for this child special needs'... another thing for me to be grateful about.

Ahhhh so many emotions about a simple thing - I'm convinced it's genetic, 2 generations back, my Great Uncle was known for beiing a tinkerer - always in the back shed making things - not socialising... invented some amazing things. Autistic traits... from what little I have heard about him - yet who really knows, they weren't diagnosing such things back then. My Aunt, has Bi-polar.. thought originally they thought it was Asperger's - the speaking cousin of Austism. My son, diagnosed a year ago, and my nephew - also diagnosed, yet his parents are still in denial, he recently turned 8.

I think one of the hardest things about Autism is the not knowing - we don't know exactly why it happens, and it's so easy to look at ourselves and say - am I defective? There is no 'cure' its' genes, and it's not up to us to manipulate these things. There is also so much guilt by association, it's hard to look at this child each day and rejoice in them, yet rejoice we do.. in every little word, little phrase, in every beautiful light-up-the-whole-face smile. Tonight, after dinner... we had friends over for a bbq, we were just sitting and chatting, and this boy sitting beside me just started singing - twinkle, twinkle.. and sang pretty much the whole song, with all the words... the first time I've heard it from him so clearly... and that was a moment of rejoicing.

Reality Strikes

Firstly a little background, we have had knowledge of autism in our family for almost 3 yrs now... life before knowledge and life after are very different.

At the time of the realization... we were married almost 10 yrs, had 2 beautiful boys, 2yrs old and 4 yrs ... and our 5 month old girl. Our 2 yr old we had been questioning his behaviour for some time... he seemed to not hear very well - so we went through a battery of hearing tests, with all clear being the results every time.

We had also been to speech therapists, and a variety of other experts with no answers... he just seemed a little delayed in speech and in learning. He also had little capacity for social skills, and didn't look us in the eye much, didn't desire to talk, couldn't point at things to express his interest or desire, he was very happy... just off in his own world.

Finally a peadatrition suggested we attend a university project workshop which was addressing children with delays in learning and social skills. The first day of the workshop didn't mean a great deal for our family... just information about what it means to communicate, and how we go about doing it.

Day 2 of the workshop started the same as the last day... not much that I felt was really relevant for us. Then we saw some videos of Autistic Children and how they interacted and played. The shock was immense - we saw our son in these videos... this is what we had in our family.

We did lots of research into different hings in those early days and months - to the point of oversaturation. One thing I definitely hold to and will for all his life is food... gluten and dairy make a HUGE HUGE HUGE difference for his capacity to learn, socialise, and understand, but I'll go into that more later.

I think we went really well for about 3 months... then fell over, and now we are 3 yrs down the track... and finally coming to terms with what we are really facing, what needs, desires, expectations, and abilities our child has... from speech, to social interaction, to crowds, to events, to schooling.. its an on-going adventure... but I think I am finally ready for the next step.

We have just celebrated our 13yr Anniversary and our kids are now 7, 5 and 3 years old.

I've never written a blog before, and I have no idea how often I will update this, but I'm writing this blog... for 2 reasons.
1 is for me - to have an outlet, and a chance to get some of these thoughts I'm dealing with out of my head.
2 is for you - the other families who have autism in them somewhere.. and just want to know you are not alone, esp on those days where you feel it the worst.