Can I Cuddle a Koala?

The other day after school, Jono hops in the car and says to me almost immediately.

"Mum, can I cuddle a Koala?"

I thought that school may have been learning about Australia, or watching a video, or talking about going to the zoo... or something.

So I repeated it back to him to make sure I had heard him right, then asked him "Where is the koala? Is it in a Zoo?"

"No Mum"

"Is it in Australia?"

Slight exasperation "No Mum"

"Where is it then?"

Shoving it into my face to be sure I could see it " This one!"

After that he attached it to his school bag and it has stayed there ever since.

I Made It!

Today was the last day of school before we start the Easter holidays, Jono had a half day and Rob and I had a chance to go together to pick him up.

As soon as he got in the car he had one of his pieces of art he had done at school, and... he wanted to tell us about it.

The convo went along these lines.
Me: Jono, what's this?
Jono: I made it!
Me; What's this one
Jono: a Flower... on a Easter egg
Me: And what about this?
Jono: A chick!
Dad: Is it a dog?
Jono: (grin in voice) No Dad.

Too cute!!

Words to do with Renovating

There has been a tonne of renovating going on in Jonathan's life recenelty and more to come yet.
We have taken out half the garage and built a new room - which will start it's life as a gym. While getting the gym done, we decided to get a few last things done to the kitchen... and then after the kitchen looked at the bathroom and started to pull that apart, along with the toilet. Next we are tackling a pool and outdoor stuff.

Meanwhile at school, they are gutting and rebuilding approximately 3/4 of the school buildings as well as putting in new buildings. So he's getting it all over in his life (poor boy). I have to say he has handled it remarkably well, and been very settled throughout, probably a lot less stressed or concerned than what Rob and I have been.

As a result of all the reno's, we have had a few classic moments that I really want to share. The first when we had an electrician here fixing the lighting in the bathroom.

The electrician arrived quite early - around 7am, on a weekend, and Jono was sleeping in. He did all his preparation work, cut new holes in the ceiling for new fixtures and got everything ready to the point he needed the electricity to be turned off. He let us know it was going off, we shut down computers, turned off the telly and let him get on with what he needed to do.

Around 5 minutes later, the electrician came downstairs with a huge grin on his face and a story for us "your little fella is quite funny" he says.

Jono had awoken, and as usual headed for the light switch in the hallway to turn it on (it was 9 o'clock in the morning an broad daylight, it didn't need to be on, but such is his habit). He reached for the switch and 'click'... nothing happened. 'Click', still nothing... 'click, click, click, click, click', pause... then a little voice 'uh-oh'. Another pause... then... 'I can't see, I can't see, I can't see!"

We all cracked up laughing and spent the next few days saying to Jono 'click.. I can't see' and he's been giggling with us. Lovely to see he has a sense of humour about himself.

The other incident that's kept us laughing has to do with shoes. We've had a shoe rack near the front door for years, and with the renos have opened another space in a cupboard under the stairs with heaps of room for schoolbags, lunchboxes, iceskates, and the shoerack.

I moved it in one night when he was in bed, so he wasn't aware it had happened. The next morning when he woke, he came down the stairs and noticed it straight away. "Where's my shoes??"... on top of "I can't see" it's been a great week, both for his intiating conversation, and for the family funny bone :)

The Power of Underestimation

What, underestmation has a power now? Well, not in and of itself, but in the effects it has on those around it.

I have for a long time just 'done' the things that need to get done around the house... socks on the floor? I'll pick them up. School lunches need making? Puts one hand in the air, while grabbing lunchboxes with the other. Floor needs sweeping? I'll grab a broom, then the dustpan, and then the mop; and so on... oh, yes, you're a Mother too and you've also been there. So you know what I'm talking about.

Around a year-2 years ago we started giving the kids more chores, and just asking them to help out in general... except for Jono. I was happy if Jono was dressed for the day, had shoes on, had clean-ish fingernails, and got into the car happily for school. Because I was more concerned about just 'managing' to get to school and work on time, he got let off the hook a lot with chores and getting ready type stuff. What I didn't realise was how much of an impact this was having on all 3 kids.

It wasn't uncommon to hear Daniel say "how come Jono isn't/doesn't/wasn't". Daniel was seeing it as unfair that he had to do 'stuff' and help out, for a time we told him he was the oldest and just 'has' to do it... then Sarah got older and started helping too. Sarah wasn't too concerned as she has helpfulness built in to her genetic coding somewhere along the line, and for me I just wanted to 'get it done', especially when I went back to work and had to leave the house on time or risk my job, occasionally late - well that's ok, perpetually late... even if due to an Autistic boy having a meltdown, and my boss worked in the education system and involved in special needs children and having all the compassion in the world... it just didn't sit right with me, I had a time I needed to arrive and I wanted to make it happen... ahhhh commitments.

This week, the amazing happened.

Get ready.

You won't believe it.

Are you sitting down?

Jono packed the lunchboxes!!!
By HIMSELF!!!

Are you amazed?

If you have a child with special needs I am sure you are dancing with me... I see you, doing twirls in your kitchen and a boogie step. If you don't then I guess you've stopped reading.

I couldn't believe it, he was around me in the kitchen, I had the lunchboxes on the bench getting them ready as I have every day for the past 'x' years, with absolutely no prompting, asking, or direction from anyone he wanders to the plastics cupboard and found for himself a water bottle, and a lid, filled it up, put the lid on tight and put it into his lunchbox. *close jaw now*

Then Sarah said, "get one for Sarah, Water bottle for Sarah", I told her don't worry, it's ok, he did a good job. Next thing, not only has he understood his sisters directions, but he knew what she wanted, and wanted to help out - back to the cupboard, grabs another bottle, and fixes it for her.

Then he stood beside me and waited. I had the next items ready to go into the lunchboxes, so I handed him 3 and he put one in each box. I get the next items and he does it again. He helped me get the rest of them ready.

Even as I write this I'm teary. He can understand things that need to happen to get ready for a day, he is capable of doing them himself, and it makes sense to him. He can help for other people and not just for himself, and he can do it without being asked. Wow!

So Daniel can not ask the 'why isn't Jono' anymore, and feel that he is being treated quite so unfairly with chores, Jono has just won himself a new job and Sarah, I'm sure will oversee Jono to make sure it's done right. All is well, all is very well!

School shirt ON!

So we've been having a battle (again) with the school shirt. It is not the most comfortable fabric, and I've been letting him go to school with another shirt and they have been dressing him there. Last year that was ok, but next year he will be in what they term as middle school and... He just needs to move past it.

So we've had lots of 'no want it' and tears (from both of us) and he's been throwing the shirt away. It's been in the school rubbish bin, over the neighbours fence, out the car window and so forth. We compromised for a while and had him in a regular shirt with the school shirt on top and that was kind of ok until he moved classrooms and there was no air con, in Aussie summers 2 shirts+no air = sleepy child. So he's found it harder to settle in and be able to concentrate. We went to just the school shirt for a while, but that also had issues. Then his teacher suggested we get him singlets. Brilliant!

He chose what singlets to get, and loooves them, he spent the first week showing them off to his teachers (and everyone else) and is happy to put his school shirt on. Such a small thing can make such a big difference.

It reminds me of the advice I give to new parents. Whatever you do regularly, becomes a habit and what they expect, be it good or bad, if you're happy with what you are doing, continue, if not, change it early!

*Takes own advice to heart*

Today, I feel it

This weekend has been fairly big in a few ways, and today's not going that great so far... Bedsides the fact that it is Monday. We are working on Jono wearing his proper school shirt, and it was going ok last week, but today he's completely against it.

Back to the weekend though. On Friday I took the kids all shopping to get groceries at Coles to help the bushfire appeal. We walked past a games shop and Jono just wanted to stay and watch, I let him for a little while, then we needed to get going. I cajoled, demanded, dragged, insisted and ended up smacking him to try and get him moving past the shop. He dropped to the floor in tears, I realized we weren't getting anywhere so I stopped and hugged him till he calmed down enough for us to be able to move. 10 minutes later we were in Coles.

While there all three kids were being mischievous as the lines were so long and some old guy who doesn't know us from a bar of soap mutters under his breath, but loud enough for me to hear, something about smacking children. Thankyou random stranger for the input. Grrrrrr

Then we went to a new church on Sunday, and a few people 'noticed' the noise emanating from our corner, not pushy or nosy, and not many of them but on top of Friday, I felt it.

I started to think, we will never be 'accepted' as a family, we will always be people who are different. As a child I strove to be different, but on my terms... Being goofy, funny, silly... This is not on my terms and I don't like that.

So today, He can't wear the school shirt, I don't know why, He can't tell us what's wrong with it, and is totally overwhelmed about the whole idea of wearing it... Both of us.
Today, I'm feeling it.

No want it, school

Yesterday we were getting the school books ready and Jono happens past the table. He sees what we are doing and pipes up, " no want it, school". We all had a laugh then were quite amazed that he came up with this sentence by himself. He's been extremely chatty the past few months lots of 3-4 word sentences about a whole range of things, it's wonderful.
So this morning he's woken reasonably early, doesn't want 1st day photos taken, won't wear his school uniform, but has put on his shoes and 'seems' ready to go. It's 5 minutes before we head out the door... Wish me luck!

I must be dreaming

I think I'm a little worried about how we are all going to go with going back to school this year, there are a few changes, they all go up a grade, Sarah goes to grade 1 so is in to proper school rather than prep, Jono has one teacher the same from last year, which is great, and we don't know where Daniel's new class is yet.

I was talking to a friend of mine near a park with a bbq, and she was starting to prepare Dinner, I suggested the bbq would be better to use than the stove in her house so we took the food out and started to get organised.. then I noticed it was getting dark and asked her what the time was... she said it was 6:30, and day care closes at 6:00... Panic Stations!! So I took off to go get the kids, when I got in the car I realised her watch was fast and it was 5 before 6, so I still had time.

Then I noticed I wasn't wearing my work clothes, but casual clothes... so if I hadn't worked, the kids wouldn't be in day care... so where were they? I went to the school grounds and found Daniel and Sarah together, not worried, just hanging out, I asked if they knew where Jono was, and he was in the school grounds playing. I asked him where his bag was and he went and got it... and they were all ok... I asked what they had been doing all day and they said they'd been playing and been to the shops. They weren't phased or worried at all.

Then I woke up... what a vivid dream!
What can I glean from this? Don't Worry, they are happy and will watch out for each other...?
Maybe, and maybe I should carry this lesson with me :P

End of School Concert

Yes I know its next year, but I have been wanting to write this up and just haven't sat down to do it.

At the end of the year is usually a time we measure things by, and reflect and look for growth or change, and nothing for us spoke as much as the end of school concert. Every year the special school holds a concert for all the kids to get up on stage and perform to songs, most of the time just actions. At the end of 2007 Jono didn't cope.. at all. For every practice they had, he would sit in the corner with his hands over his ears, screaming 'too loud, too loud' and crying. He was scared, he was overwhelmed, and not coping at all.

For the end of year 2008 concert, he has just grown soooo much, partly I would say due to his teacher during the year, partly due to him getting older and just being able to handle different situations better. For each practice they did, Jono participated, learned and tried his best to do what was being shown to him. He had a little solo part in one song, and he had 3 songs he did. After every practice his teachers came to me and said they were so proud of how he was doing and were really hoping he would be ok on the night.

Then... once we found out the night of the concert... we were already going out that night and had organised babysitting for the kids, Rob booked tickets months previously for a special event for my birthday... aaarrghghghghgh!!! He's doing so well and it looked like he couldn't go!

Fortunately Nanna was doing the babysitting and when I explained the situation to her she said that if it was important to him, she would see how the kids were on the night and attempt to take them... I thought she was either brave or insane.

So, I co-ordinated with his teacher that she would take Jono's changes of clothes for the night with her, Nanna would take my car for familiarity, and Rob and I would leave early and cross our fingers. We also discussed the concert for a few days in advance, that Nanna would take him, that Daniel and Sarah would be with him and that Daniel and Sarah would be the biggest helpers in the world on the night.

We didn't hear how he did until we got back, but he did brilliantly! Nanna took all three and he had no problems 'going for a drive' once they got there they found the hall easily, and walked in the door to have his teacher find them straight away, take Jono and say - let's go get ready... and he was off for his performances. He got changed for the first one, got up on stage and performed comfortably... he actually had a teacher behind him lifting his hands for the movements with the song, and after a while he kept on backswiping her to get away so he could do his thing... cheeky!

He did another 2 performances with one change of clothes with even a spotlight middle of the stage moment for a 'solo' dance. I think we've watched the video of the night around 5-6 times now and are just soooo proud. From last year where he couldn't even listen to the other people practicing, to being on stage, in 3 performances, doing a solo, and having a few changes of clothes... simply amazing!

School's out... for... EVER!! Untill next year at least.

It's the end of school, and this week has had some very slow starts, Jono still had his late night escapades and wakes late in the mornings. He's decided he doesn't really want breakfast most days, and as he usually gets up somewhere between 15 and 30 minutes before we have to leave I've decided not to force the issue.

The big exciting news is that next year he gets the same teacher, which I am so completely thrilled about, with her he has grown soooo much, and it also means school will be familiar when he goes back. He is however getting a new classroom, I mean like a 'new' classrooom, they are building it over the school holidays! His teacher has been chatting with him about when he comes back he will go to a new room and it will be 'there', and she points to a grassy area, he seems to get it.

Looking back on the year (as we often do when things come to an 'end'), he has just grown so unbeilably much. We started the year on the school bus and without a school unform... somehow they always seemed to end up over the fence in the neighbours yard, to go through to not coping with the bus at all, to riding in the car with Mummy and wearing the uniform, to taking the uniform in a bag and changing at school.

He's learned to write this year, and he actually wrote Merry Christmas all by himself on the little end of year take home bag that he made for his parents. His counting is outstandingly better, his interest in words has grown again, and he can read small books, and his comprehension of his family and friends is much better. If something happens that he thinks his siblings will want to know about, he will actually call their name and walk around the house looking for them.

He has started being socially friendly as well, he will regularly call out 'hello' to random people on the street (good and bad), and on the last day of school we walked in past his classmates and he waved at them... like he recognizes them for people he knows, and realises he should do something in welcome to them... amazing!

So we have 6 weeks of holidays, we have some time away, in a caravan park with Grandma, we have Christmas, we have parties, we have day care on the days where Mummy and Daddy still have to work (oh summer as a kid, they just don't know how good it is), we have renovations to move on with, and who knows... we may just find some time to wash the alien off the wall in the toilet... we may even get someone to help with that one :)

School Holidays.. Woo!

Back to School

Its been an interesting start to school this year.

Sarah's first year, and she is thrilled to pieces, Daniel's in grade 4 and 'over' school. Jono in grade 2 at special school, and it's a little different - classes, teachers etc, but still the same - same bus, same drivers, same assembly to start the school day.

In his first week - 2 days were great, then 2 days of tears... we 'think' he may have been tired. His second week was more settled, and this week he's going great.

The extra special thing about this year, he is actually looking at me when the bus pulls out, instead of in the air or at the trees. I've been able to wave goodbye and blow him kisses, and he gives me eye contact, and even blew a kiss back and waved.

I tell you, warm fuzzies all over the first day he did that :)

Today is his swimming day at school, and I got him to tell him, he gave me eye contact and listened well, and I told him - Today Swimming day, at School. So he reached out and gave me the biggest hug. I really wasn't expecting that kind of reaction, but I think it was his way of saying thank you.

He's an awesome boy.

So sad, I want to pat the fish

At School they have a little fish tank with a goldfish in it. This morning they told me how the kids have all done really well with it, they take turns feeding it, and they have all gotten past the stage of trying to get the fish out of the tank to hold/look at it.

This afternoon... I turned up to a boy in angst and tears, they said he was upset coz he wasn't allowed to have the fish. He couldn't cope with leaving so we tried to forcibly carry him to the car, he dropped to the ground and lay on the path for a while, then we did pick him up and carry him. We got him to the car but then he couldn't sit in the seat.

After about 3-4 minutes with him collapsed on the floor wringing his fingers and mine, and completely unable to listen, I dragged a seatbelt across him as best I could and went for home. After all it's only 700metres from school.


We got home and he couldn't get out of the car, so I had to forcibly carry him again, though he didn't struggle quite so badly this time. After getting in the gate he wandered around the yard with his hands over his ears for a few moments, then came to the gate and cried "Open, open, open." He really really wanted the fish.

I got him upstairs and into the shower for a bit of relax and desensitize. He's stopped crying, and seems a bit calmer.. I'll see how he is after I get him out, I'm sure he'll be ok in a bit of time, it's just heart-wrenching when he's so upset and there really is not a thing I can do.

This is the biggest meltdown he's had all year, he is tired, he did eat wrong foods on the weekend with the Birthday party he went to, but this is the first time in 6 months where he's lost it so completely. Poor boy, if only he could express what it is that is causing the pain, we could do more about it.

School is a great success

Choosing for Jono to go to Special School was definitely something difficult, but it has well and truly paid off. We are still waiting for words to bloom, but he makes his intentions known better than before, and is picking up body language a little better.

He really enjoys himself there and has made a few friends... or at least he has peers who know his world. We've had one of the boys over for a play day with his Mum and Dad, Jono and his classmate didn't really play together very much, but it was great for us to see another child in similar circumstance and be able to speak to parents who understand.

We have been invited to a birthday party with one of the other boys this wekend, and that is something special as well.

I've had a couple of clashes with his teacher, but we've spoken about it more in depth and have a common ground now. She'll make a quick statement about a behavior that she sees as important to work on for his capacity for acceptance and social comprehension for both him and other people... I take it personally, thinking.. you're the teacher... teach.. but after talking it through I see where she is coming from and how we can work on it at home. It really is a 2 part process, if we are all walking on common ground it makes a difference.

School Dramas

So, 2 weeks before the end of School last year, the special education unit asks me to come in to discuss what will work best with the funding and teachers they have for Jonathan for Grade 1.

They explain that the government supplies 1 teacher aide for 5 hours per week for each child with special needs. If they apply for more hours they can get an extra 2... or something like that. So out of 5 school days Jono was able to receive 1 day of support.

Then we discussed Jono arriving at school a little later, and they said that he would be able to stay up until first lunch... so around 2 hours a day.

Frustration is a good word for how I felt about this.
I then went to the Special School across the road and talked to them, they said that their would definitely be a spot for Jono if he was eligible, but to be eligible he needed to be Intellectually Impaired. 'Great - another label' was my thoughts.

Back to the school guidance officer, and they said the process to get a child who is untestable qualified for special school takes about 2 months. and as school is ending in 2 weeks, its unlikely they will be able to sort this before next year.

Next stop, our paediatrician, and an assessment from them with a letter recommending them to go to the special school.

After that, back to the guidance officer who calls in their supervisor and talks to the principal of the special school.

Then we arrange an appointment with all parties to see Jono in his class environment and how he interacts with other children and his capacity for mainstream school.

Say it with me.... Tearing my hair out!!!!
So, in this narrow timeframe, there was a heck of a lot to organise, and I just wanted to know where he could go and where was best for him, and I didn't want to label him as I didn't know what adverse effects that label may have for his future endeavors, as well as the stigma it may carry. There where a lot of tears and trials in getting this organised.

Then, on the second last day of school we met with the area supervisor. When she came her first question was... where do the parents want him to go? The absolute relief of dealing with someone who was willing to work with us on what's best for our child was just... so hard to put into words.

There were many tears along the way, feelings of inadequacy, and just the short time span. But we got it organized, he is in Special School now, and thriving. The teachers are great, if he's 30 min late because he didn't want to wear his shirt this morning and took some extra time to resolve it... they don't mind. If its swimming day and putting shoes on when you wear swimmers doesn't make sense... that's ok.

It's just freedom, and a chance for him to grow and learn at the pace he is able.

Well... we got busy...

We went away to Cairns (the top end of Australia) for a holiday in September, and I had no Internet access... so the blog got put on hold :)

We had a great 3 wks, Jono was very forthcoming to people in the swimming pool, and jumped wholeheartedly onto complete strangers backs, fortunately they were very relaxed up there and it didn't cause issues. There was also a moment where some kids were running races and tried to get Jono to join in, I explained he was Autistic and didn't understand but thanked them for trying to include him, two minutes later they were getting him to do high fives with them.

Sarah and Daniel also enjoyed being away from home, and loved Grandpa's dog. We all had a really good time, and I think Jono only melted down once or twice. We drove the whole way there and back 1700km's, with the three kids, and they all coped really well... Rob and I were quite amazed.

Towards the end of the year, Jono plateaued, he didn't really progress in speech or school, and I think he knew school was finishing as he got more difficult to direct. The last two weeks of school, I had lots of concerns and dramas about where he should go for this year, as I wanted him in special school, and he had to be intellectually impaired to be able to go. More 'labels', stress, choices, decisions, questions... it was hard, but we got through it, and he is now in Grade one at special school.. and he is doing wonderfully! More on that later.

We also had an very interesting summer holiday, it was too long and not long enough, but we all did very well... and more on that later too. Nice to start blogging again, he is my special man, and life is busy, but good :)

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.