I am the Beanbag KING!!

Well, the other night I took my oldest to Iceskating (which I get on the ice with him) and my hubby decided to read some of Harry Potter Book 7, which we have both enjoyed. We put Sarah and Jono to bed before we leave, about 7:30pm and Sarah's head touches the pillow and she's gone (as usual) but Jono settles into his prancing before sleep routine.

I get back around 9pm, and get Daniel to get ready for bed and check on Jono... I asked Rob if he had checked on him lately and Rob said not for about 20 minutes... and as I had just looked in his room, I asked him to come and check with me.

Jono has a bean bag in his room, its the standard shaped one, he's used it as a blanket, slept on it, read on it, and just basically enjoyed it. Tonight, there are beans aaaaalllllllll over the floor in his room, the beanbag is not actually empty tho, it still had at least 3/4 of the beans in it... and a child.

Jono had somehow opened the zipper, climbed in, somehow managed to close the zipper behind him and was standing upright inside the bag... still with lots of beans in it. He thought this was quite hilarious and was full of giggles... we thought he could choke or suffocate. We tipped him upside down, unzipped the bag and put a sweaty boy into the shower. We swept up as best we could, then took the beanbag out of his room. It hasn't gone back in.

The concept of danger seems to be so limited at times and I don't know if its purely a developmental thing or an Autistic thing. It was quite amusing to see a child standing INSIDE a beanbag giggling to himself... and no I didn't take pictures of that one as we were more concerned for his safety, though looking back it would have been funny too :)

As early as 3 months...

I've been reading a lot of forums from other families with autistic kids lately and a common thing is the 18 month old needles... that their kids were bright, blooming and blossoming, learning to talk, socially interacting, some even have video of it, before the needles and then afterwards, they are... not. (I even remember Jono waving goodbye to people of his own accord at 10 months.. I also remember at 14 months seeing he was 'different')

Now I've been firm in my individual belief that it's genetic, whether the needles accelerate the traits or not.. I don't know; but the other night I was astounded. We were as a family sitting and watching some videos of the kids - it started as me and Sarah watching a bit of Mummy and Daddy's wedding, and then we all came to watch.

In amongst the videos was some footage of Jono at 3 months old in a bouncer, I'm clicking my fingers and calling his name and trying to get him to respond so I can film him - as all parents do with kids that age I am sure :)... and there is a moment, just before he caught the camera and smiled the biggest cheesiest grin.

This moment, and it's really brief, is of him looking from the corner of his eyes. He does it a lot these days, it's as though he is looking at you safely.. if he doesn't look at you or the object directly, then you don't know he is looking at you, and he can decide if it's safe/he wants to get involved... and he still takes everything in.

So I see this moment, of his corner looking at the camera, then he lets out this big grin... at the age of 3 MONTHS! Corner looking (for want of another term) from that age! I didn't notice it before, and sometimes you only see things in hindsight, but this helps me so much with the idea that the 18 month needles had something to do with it.. because from this, I really don't think they do and it helps me to be settled in the idea that it's genetic... and it really is completely beyond my control.

Christmas in July

The other night, we were in the kitchen and the kids we either with us or in the computer room, Jono was on the computer he prefers and just playing some game.. and we heard singing, a high clear voice in perfect tune, and clear pronunciation of every word... "Jingle Bells Jingle Bells, Jingle all the way, and then it turned to mumbling... but still in tune, coz he didn't know the next words.

We walked in and saw him still singing, but gosh darn it, no matter what we tried we couldn't get him to do it again. This is the new record for the longest amount of words he can string together.. and it was crystal clear, it was Christmas for us in many ways that day :)

Amazing outing

Like, pick my jaw up off the floor kind of amazing.

I took Jono and Sarah to the shops today.. I usually don't like going on a Saturday at all because of how busy it gets, and usually try and take only one of the kids.. so today I had two. Usually as well when we take Jono we 'lock' him in the seat on the trolley so we aren't chasing him down aisles and wondering where the heck he is the minute we turn our back.

Today, he sat in the seat for a few minutes, then decided he wanted to get out... I already had the fruit and wasn't planning a big shop so thought, ok... we'll walk and if it's causing too much stress, we can leave.. with or without paying for them, I can always come back later if need be.

He got out, and was simply amazing.. he walked near me (around 3 steps away) almost the entire time, and on the odd occasion where he went further away, he came back immediately when I called for him. Sarah was being a good lookout as well. He picked up a few extra things he wanted to have, and amazingly they were all gluten free.. but things I usually don't buy... so we got some different things this week.

The thing that amazed me.. is ... he walked. He didn't run, he didn't scream, he didn't check over his shoulder with a cheeky grin to see if I was chasing him, he just walked... happily and obediently. It was wonderful! I'm so encouraged by his behaviour and feel a lot more confident to do more with him :)

The other wonderful thing was as we left and went to the car, a lady followed us the whole way.. and I was with the: "this way, stop and wait, hold hands, watch for cars, stay close.. etc". And when we got to the car she said, " I want to congratulate you on the way you talk to your children." That was a really nice touch to a wonderful outing :)

Transitioning is hard

Well, I'm at the point I'm actually labeling some of Jono's behaviors with Autistic terms. Is this another level of acceptance? Who knows.. it's just where we are at.

Yesterday on school holidays, we went out to a local park, Jono had trouble sitting in the car seat properly and preferred to be on the floor (as he had the other day). He's been horribly sick, with a vomiting flu thing and its really sapped him, and has seemed to cause some regression - he went through two days of no talking at all, and even now his babbling isn't as bright and cheery as normal.

So anyway, yesterday we went to the park, and then we wanted to go to the shops to buy something for Daniel, I spoke to Daniel about the chance we wouldn't get it today, depending on whether Jono could sit in his chair or not... How does an 8 year old take that you may ask? Well... it was difficult for him to understand he may miss out because Jono was having a 'moment'... but after he understood that I would not drive for 15 minutes to the shop we needed to go to because Jonothan's safety was more important, he seemed to be ok.


We got back in the car after the park, and I swapped their seats putting Jono directly behind me.. again he couldn't sit in his chair, he wanted to be on the floor. So I put the seatbelt across him the best I could and thought - perhaps I could bribe him, and we drove the few hundred meters to the petrol station and I got everyone an Iceblock. That worked! He sat up for that. So we had 1 boy ok with driving and in his chair properly, and one boy who was happy because we could now go to the shops. So off we went.

At the shops we got a game for Daniel, and some stuff at the chemist, then got back in the car... I bought everyone some drinks on the way out so Jono would 'have' to sit up again and he traveled fine. We got home and started baths, the idea was to have Jono in the shower while the game got installed so that the computers weren't doing something that was too odd. I got Sarah in the bath, and was upstairs when I heard Jono crying and wailing, genuinely distraught.. I came back to see he had picked up the game case and opened it, and I could not see the CD... so.. I start thinking - oh great he's tossed it somewhere, and start searching the front yard, the lounge, the stairs, the back yard.. to no avail. In the meantime Daniel is getting distressed coz the cd is gone, and Sarah is needing to get out of the bath to go to the toilet (never rains!)

So I sort Sarah, help Jono to calm, and then ring the shop... and they messed up, the disc is still there... let me express how I now feel in syllables... GRRRAAAGGGHHHHHH!!!

So, I explain to Daniel that it will have to be tomorrow, the shops close in an hour and I don't think Jono will make another trip today... and Daniel is in tears. I get Sarah through the bath.. and it's half an hour before the shops close.. so I thought.. let's try. I ask Jono if he wants to go for a drive, and he said yes... so we pack up again and head off.

The drive there was fine although busy, they gave us some money back as an apology, and were nice about it... then Jono wanted to stay in the shop, I explained it was time to go.. but he just couldn't. So I drag a screaming boy out of the shops to the car.. in the car he couldn't sit again... I coerced him, and even smacked him a few times to get him to his chair... he ended up standing at the front of his seat and I got the seatbelt on, but he just couldn't sit down. So I got some chips from a drive through and headed off... the 20 min home with a screaming, overwhelmed, scared boy clinging on to my head rest for any comfort he could obtain from holding something familiar was not the most pleasant trip of my life.

The choices are hard some days... I can't hold my other kids back from things they enjoy because one is having a hard day, but we all need to be compassionate and give room where its needed.

And after everything, he slept very well that night.

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.

Movieworld!

Well there was a long weekend and we haven't gone away or done anything major as a family since Cairns... which was September, so we decided to take advantage of the extra day off and go to Movieworld.

It was a fantastic day out, and everyone really enjoyed themselves.

We started the day with Daniel and Daddy on the Spooky Rollercoaster, this may not have been the greatest idea, Daniel got off in absolute tears he was sooo scared by it all. While waiting Jono, Sarah and I played around on an old horse drawn cart, I sat up the front and Jono just wanted to sit on my legs, in the sun, and hold my hand... it was lovely.

The next ride was the wild west one.. all in a boat river ride, through some dark areas, some sections were backwards, and the end of it a long slide down into water... all 3 kids were crying on this one. During the ride Jono got very scared and wanted to get out, but he let me keep him in, and then put his head down on the bar in front and just screamed and cried. When it ended he was desperate to get off, and after we hit land he collapsed in a pile of tears on the ground... not angry, just... well.. terrified.

We stopped for a snack and gave everyone a chance to calm down then went to the kiddie rides. Sarah and Daniel were thrilled and I went with them on a ride, but Jono didn't like the idea at all.. he watched a slow, level train do it laps for a while, then we had Daniel and Sarah queue up for it. Once they got off, and seemed to be happy about the ride.. Jono was queuing at the gate.

He had a go on that, then a pirate ship style ride.. 3 times, then we went to see a show. We came back to the kiddie area, and Daniel had a go with Sarah and Daddy on the Rollercoaster. Daniel and I went to Lethal Weapon earlier, and I told him 'When you are scared, really scream loud and chase the fear away'... but we couldn't go on it coz he's not quite tall enough yet. So when he was on the kiddie coaster he remembered this and screamed his heart out... and LOVED it, he came off with such joy and wanted to go again. Sarah, was in another pile of tears, it was too scary for her.

After that I took Jono and Sarah on the train again and the pirate ship.. I let them ride by themselves on the ship, and Jono was a bit scared at first, but I made sure he could see me and he handled himself really well.

The last thing of the day was the Shrek show, Jono couldn't handle going in there.. and he did that very clearly every time something like that freaked him out, he just grabbed me or Daddy's hand and forcibly pushed in the other direction.. not desperate, just determined. So Jono and I went shopping on the main street while the others saw the show.

An amazing day, everyone really enjoyed themselves and we came home exhausted... school the next day was a bit of a challenge, mainly getting people out of bed. I think we may get a season pass for there for Christmas and go a few times, so we can go when it's not such a big day and take the time that suits us :)

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.

So, on our holiday

Which was a while ago now >.< Life gets busy :)

We drove the 1700km's to Cairns with all three kids in the car, and it was fun, we took 3 days up and 2 days back and stayed in hotels. It really was an adventure, we are just lucky that our kids enjoy traveling I think.

We stayed with Grandpa for about 8 days, all the kids piled in with us, and we drove each other nuts. Jonathan's lack of concern for special things was a minor stress to Grandpa, and the lack of things for the kids to do at his house was a minor stress to us. We did go out a lot, but Sarah still needed a daytime nap, so it took a bit of organization. I'm glad we drove up because then we had a car to drive around as we wanted.

We took all the kids to Kuranda, and decided to drive up as we thought they would cope better. On the way back Sarah and I rode the Skyrail, while Daddy took the boys on an army duck. Jono spent the entire trip with his hands over his ears for the noise, but seemed to enjoy himself.

We visited the Butterfly farm, and all the kids really enjoyed it, Jono was just prancing up and down the paths, while Daniel had a butterfly attach it self to his shirt for the entire tour. Then we also visited the Bird Sanctuary with these amazing Macaws that you could hand feed near the froont... these really grabbed Jono's attention, and he constantly wanted to feed them, even when they lost interest. It really was a wonderful time.

We visited quite a few play spaces while we were there, and the local Golden Arches saw us a bit. Once we moved into caravan parks we spent a lot of time in their playground and pool, as well as just chilling in front of the TV with the lego's. It really was just a great time away from home. We were also very glad to get back home at the end of it and have a little more space and 'routine'.

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 :)