We hate Planes

Or so we thought...

so here we go, the story about the planes. Before moving to NZ, we decided it would be a good idea for me to at least come to the country once and see the land, the housing, the schooling, check out the teachers, and the special needs system. I'd spent 2 months researching on line, but it was time for some eyes on the ground.

In order to make the special needs case more evident, I was to take Jono with me. Rob was already in the country on business, I had arranged babysitting for the other two, and Jono and I were packed and ready.

We arrived at the airport, parked the car and checked in. We went through customs, got something to eat and went to the gate our plane was at. Jono was comfortable, relaxed and happy. We had been talking for weeks at home and at school with social stories, videos and pictures about going on the plane - and every time he said "I don't want to" We thought that he would be fine once he got on the plane, but we didn't realise just how much he really didn't want to get on it.

We walked down the airbridge, and turned the corner to the final section to walk onto the plane - around 20m worth... and it was enclosed with glass. The moment he saw the plane through the glass it was over.

He started to stress and panic, and stopped walking saying 'I don't want to'. He lost it, I lost it, I attempted to forcibly carry him on board, and it was unbelieveably overwhelming. I had every member of staff from the plane bring out everything they could to attempt to coax him on board and it was just not going to happen. I even rang Rob who was in NZ in a meeting and asked him to help talk Jono onto the plane.

20 minutes later - defeated, bawling, screaming, saying it wasn't fair (and that was just me) they unboarded our luggage and we exited the walkway. I took some time to calm down and assess the situation. Then started the phone calls - Grandma to babysit Jono, new ticket to get to Auckland, refund on unused tickets, madly drive home, re-pack, get Jono settled and get back to the airport in 4 hours for my next flight.

I arrived at 11:30 at night to a husband with flowers and a balloon. the next four days were intensely busy and we decided we would move countries.

The next trip across was the actual move, and we decided to take no chances with Jono and actually gave him some drugs to knock him out before getting on the plane, and board him on a wheelchair so he would not notice as much. The moment of the deep snores from his mouth 5 minutes before taking off was pure bliss for Rob and I. We got him on board, and then he woke up, after only 20 minutes of sleep, but he coped, and we all made it together.

The next flight was back to Australia for Christmas - again he didn't want to go on a plane, but we realised it wasn't the plane so much, it was being all together as a family that mattered - which compounded the problems for the first flight. We got some very light herbal lollies to help him relax, and that was all he needed.

The next flight, was heading back to NZ after the holiday, and he was happy - no herbal lollies, no drugs, and none of the I don't want a plane, just I'm going home to New Zealand, and I'm with my family.

We get him the wheelchair for each trip - as it anchors him, and is familiar now, but amazingly, he wasn't worried about the plane, just where his family was, and where his home was.

Now... if only he could have told us that in the beginning ;)

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!

Autism Awareness Day!

Today, April 2nd, is World Autism Awareness Day... were you aware? I wasn't either until I heard it on the news this morning.

This is a fairly new event, having been legislated by the United Nations on December 18th 2007, and as such is one of only three disease-specific United Nations Days . The aim of the day? to raise awareness of the condition to the people of the world as a whole and impart the importance of early diagnosis and early intervention. Read more here...

So why should you care? In all reality I don't expect you to. If it's not your child, your family member, your area of work or research or interest I don't expect this to have any impact on you whatsoever.

I was asked on Twitter This morning by @rentedmule 'What is my favourite charity?'
My reply? A tough question for me, of course there is Autism, but there are others and they are mainly for personal reasons. I have a friend whose daughter has Cystic Fibrosis, and that's a big one. I've donated blood and collected money for Red Cross society on more than one occasion, I have a soft spot for Starlight foundation as they grant children with fatal diseases one last wish and I have done Shave for a cure, for people with Leukemia. The article appears here. Do I care about people who are rebuilding after Black Saturday for example... yes, of course, and I have donated to the cause, but they aren't as big a priority to me, as there are so many other things that have personal impact in my life.

I think the idea of Autism Awareness is fantastic, and having it as a UN legislated day shows to me just how much of an impact this condition is having on our world. The other thing I love? They focus on things like early intervention, not on chelation therapies, foods or 'cures'. Simply raising awareness. Wether a 'cure' will ever be found, or its more a matter of people with this condition learning to be able to intergrate better with the rest of us is not something I focus on.

I know there is genetics involved, I know a lot of people say that the 18 months vaccines 'cause' Autism (though personally I'm convinced that is not true, though it may accelerate certain traits), I know there is still so much unknown about the condition. I also know, for me personally, in my life, I have a boy who is bright, loving, smart, has a great sense of humour and is an intergral part of our family, who is Autistic.

Who would put their 10 year old into counselling?

*puts one hand in the air*
That would be me.

*put up other hand*
And my husband.

It's been an interesting few weeks, we've been delving into 'causes' of our weight gain, and looking at our lives and the things that have caused our bodies to gain weight. A lot of the recent weight changes is just 'coping' with the changes in our lives due to have a child with special needs, and the personal guilt, anger, disappointment, resentment and so on through to the point of being 'ok' with it and continuing on with living in a good frame of mind rather than a guilty one.

So with all of that we have been looking at Daniel and what 'could' have caused his weight gain. We went back through the family photos and discovered that when he was in grade one, he was skinny as.. then from around the middle of grade two onwards he started to bulk up.

When we looked at the photos we realised a catalyst for him in his life has been his grade 2 teacher... she used to yell at the students and he would come home around once every 6weeks saying that she was shouting. At the time we didn't think a great deal of it, and tried to tell him perhaps the kids where being naughty. Wether it was that simple or not, it had a massive effect on him. So much so that when he started grade 3 he was so amazingly scared of going to school, we talked it through and we thought it was dealt with and we all moved on...

This year, with looking back at his life in photos, and talking to him about it we realised how much bigger this was for him. Then Sarah started saying that her teacher yelled at the kids and they would all get scared. Mommy Bear awoke at this point raised her head and decided to take it straight to the authorities... the school principal.

The night before I met with the principal I was talking with my Mother-in-Law about life and talked about this latest realisation we had. In discussion she talked about the chances are that Jono has also had a large impact on Daniel and told me about the times Daniel wasn't coping and would clench his fists in anger about things that jono was doing... At the time I was not able to see what was happening with him and I wasn't even aware of this going on. I've since seen it and talked with him about it.

So... in the principal's office we discussed the grade 2 teacher, the challenges of having a special needs child for us as a family and the difficulities that could be there for Daniel. She said that the school was going to have a counsellor once a week to the school to help children with things like this and would I like Daniel in the program. Half of me said yes, and half of me said 'what am I doing?'. Regardless, I booked him in. The counsellor was due in 2 days after I saw the principal... talk abut timing.

That night at dinner we talked with Daniel that he could have this person to talk to about 'anything', about his teachers, about his family life, about Mummy getting sad, about Daddy getting frustrated, about him getting frustrated, everything was open for him to talk about, and that this person can give him ideas and suggestions to help him out both at school and at home.

He was really interested to understand all about the counsellor and wanted to know everything I talked about with the principal. A few days later he had his first session. When he got home we asked him how it all went. He enjoyed it and was really happy to go, so much so that he asked to go again the next day. I don't know how much he really got to discuss that first day, or if he's just excited to be missing out on school, but I'm happy he's happy with it, and that he has an outlet and an option for him.

We all need support, and sometimes it turns up in unexpected ways.

We have the funniest brother in the world!!

Quoted from Daniel and Sarah.

Yesterday was my last day of holidays with the kids before I went back to work, so we got in to organising school books, clothes, shoes and etc. I had been through all their clothes and figured out what needed to go the day before and had 4 bags for the op-shop. Grandma was in town and rang asking if I'd like some help school book shopping... for some reason I thought this was a silly question... like some? I'd LOVE some! Anyways, I tried to sound fairly nonchalant over the phone but secured and extra pair of hands, arms, legs and eyes for the day.

So, we started by going to pick Grandma up, then went to the op-shop to drop off clothes, bought a few things we needed and a fair few we didn't then went to the shopping center. In shop number one we got most of a set of school books, socks, shorts and shoes for Sarah. I pulled out around 4 pairs for her to try on and we found one she liked that I was happy with the price of.

Jono then decided he wanted shoes... so he pulled out a pair of lovely pink girly sneakers from the aisle we were in and sat down to put them on. I talked him into a blue pair that only had tips of pink... but he wanted the size 3 (he's not quite a 1). I tried to get him over to the boys shoes but he didn't want anything to do with it, no he doesn't need help, no he doesn't want black shoes or white shoes, yes he wants these ones. I left the 3's on him and decided to do the quick swap at the checkouts, which entailed him taking off the 3's, putting them up to get paid for, and lo and behold after touching the checkout girls hands they became a size that would fit! or a better fit at least, and if I got them home and he never wore them again, at least Sarah had some shoes that she could grow in to.

After this we needed food, so wondered off for a drink. We all sat together and then I said I wanted a few quick things from the supermarket, and Jono could stay with Grandma. The other two came with me and we took off only to find Jono racing towards us down the aisles moments later with Grandma in tow. Ok, so he wanted to stay with me, no problems, got some groceries and headed out. So far, we had taken around 3 hours to get this much done.

I wanted to stop in a ladieswear shop to spend a gift card I had received for my birthday but felt the day was moving on. Grandma insisted we stop and I take advantage of the opportunity, so I did. I found a few things I liked and the assistants put them in the change rooms for me, then I went in to try them on. Daniel and Sarah were playing games around the curtains and the entry. Next thing we all know Jono is in the change room next to me taking off his shirt and placing it neatly on a hanger and hanging it on the hook on the wall, then he puts on this lovely tan top with holes cut into the top, and parades around the shop in it.

Daniel and Sarah couldn't contain themselves.. their brother was trying on girls clothes!! After quite a few giggles and "too big Jono"ses he took the shirt off. I had decided on what I wanted by now, so I was in luck, but Jono hadn't yet though. He didn't want his own shirt back on, found a stripey singlet top and went and put that on. Followed by more giggles and more "too big"s he took it off put his own shirt back on and we headed off.

Today's highlight? Jono trying on girls clothes in the fitting room of a ladieswear shop. At least he knew to go to the fitting room... and even tidied up after himself, now just to work on that at home!

He's a Computer GEEENIUS!!

Quoted from his brother Daniel.

This morning after the holidays and school holidays we are very much getting back into the mode of 'normal' routine and we were putting Daniel's iPod back onto his computer (after the earpieces had been borrowed for something else). Daniel had been storing his iPod and the charger for it in a board game that he had received as a birthday present for the holidays so he knew where it was easily.

We went to the boardgame and discovered Jono had found the game and set up the pieces and had been playing with it, and Daniel's iPod wasn't inside... so he started looking, on the floor, under the couch, move the furniture, lift the bean bag, shift the doonas, move the pillows... ok this is starting to get silly.

I was doing something else so I kept saying just give me a minute and I'll help you look, and he was getting frustrated. So I went over to help him look to no avail.

Just then Rob came in the room and asked what we were searching for, we told him and he said - oh it's over here on your computer Mum... and we looked, and so it was!

Jono has found it in the boardgame, taken the ipod and the charger to my computer, found a usb port, plugged the charger in, and put the iPod on it's dock so it could start charging. No... none of us have actually shown him this before he did it without any help. He 'IS' a computer genius!

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.

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.

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.