Thursday, 29 September 2011


A week ago I got a phone call from a nurse who used to work on the kids ward at the hospital. She no longer works there, but works at the Launceston Clinical School. It is a part of the University of Tasmania's School of Medicine program, and runs from the hospital.

She rang to ask me if I was interested in taking part in their 'Patient Partner Program' (P3) with Noah, where we would come along for a few hours one morning and talk to year 4 and year 5 med students.   She said that this week they were focusing on 'disability' and that there would be three other people who have disabilities who would participate, with Noah being the only child.  She also said it would involve talking to two groups of a maximum of four med students for 50 minutes.

I thought it would be a great opportunity as a lot of med students don't have a lot of experience in dealing with kids like Noah, and whatever I can do to help educate anyone about disabilities or hydranencephaly is an opportunity not to be missed.

I organised with Alison for Kobe to spend the morning with her, and it was a HUGE mistake to tell him a week before it happened as he was SO excited to go to 'Asn's house'.  Every morning he would wake up and the first thing he would say is 'me going to Asn's house today!!'.  Then we would remind him it was on Wednesday and he would cry and cry saying 'no today!'.

He was hanging out for it all week and was so excited yesterday as we were driving to meet her at the hospital.  He yelled and pointed 'I can see Asn's house!!!' (even though it is nowhere near the hospital!).   Alison picked him up and he had a fantastic morning with her.  When Noah and I met them after lunch he was so excited to tell me all the things he had done - first of all knitting with Eleanor (Alison's Mum).  Supposedly he was interested in it and Eleanor told him she would teach him how to knit when he was a 'big boy' to which he said 'I AM a big boy!', so knitting time it was! :)

They also went to City Park and had a fun time playing with Alison's friends Kate and Addison.

While Kobe was having lots of fun with 'Asn' Noah and I also enjoyed talking to the med students.  Each group was supervised by a doctor. The first group was supervised by an older GP.  Each student was given a different task - the first student was to ask me about Noah's medical history and diagnosis, the second one was to examine him and the last one was to talk about treatments.

It was nice to be able to have such a long time to talk about things with them and you could tell they were all very interested.  The doctor would often stop me talking to ask the students a question, and it took all that I had to not put my hand up and say 'ah, ah!!'  like a little kid at school who knew the answers as it was all stuff that I know so much about after dealing with it for the past ten years.

The thing that I was surprised about was that the doctor was actually really interested in teaching them about how having a disability affects the family, and about attitudes in society, rather than just focusing on the medical side.  I was really pleased that they looked further than just dealing with treatments, prognosis, and medications etc but instead wanted to know how caring for Noah affected me, and how our family had coped with hearing the news etc.

After the first group the GP that was supervising the first group I spoke to, came and found me and put his arms on my shoulders and kept saying how much he appreciated me coming in, and how much he loved what I had to say, which was nice to hear.  We had a break in between groups and got to spend time with the other three participants who also had disabilities. There was a 40 year old man with Downs Syndrome who was there with his Dad, another guy who seemed to have some kind of brain injury and another man who was a paraplegic after being in a motorbike accident 38 years ago.

The man with Downs Syndrome was awesome and was telling me lots of stories about being bullied and how he had dealt with that.  He told me that often kids would go up to him and go 'hiiiii  - I'm spastic!' and back to them he would just say 'Hi Spastic! How are you!?'. It made me laugh and I told him it was great that he could turn it around, but it also made me sad to think about how hard it must've been growing up as he was bullied because of his disability.  It reminded me of how a lot of people use the word 'retarded' in such a negative way when putting something or someone else down, and how hurt this man must've been throughout his life.

The man who was a paraplegic was amazing and told me all the things he continues to do despite being disabled.  He is married, has children, travels, mows the lawn (on his ride on mower) and just gets on with life as much as he can.   He told us a hilarious story about how he was mowing the lawns and a nurse pulled up to give him an injection and said 'I'm here to give a patient an injection - they are a paraplegic' and he was like 'yep - that's me - I'll just get into my chair' and got himself off the ride on and into his wheelchair, while the nurses eyes just about popped out of her head as she was imagining a patient who was totally different. It was so nice to hear that he has such a great attitude about life.  He told me he looks at Noah and it reminds him that there are a lot of people out there who have it harder than him.

The second group of students I talked to was run a lot differently.  They wanted me to start by just telling them Noah's story and then they jumped in asking me questions as they came up.   The supervising doctor was one we had dealt with on the kids ward before and was lovely.  They asked a lot about how we cope, asked  me what I do for myself to take time out, about support we have from family and friends, how we cope financially, especially when there is no support from the government, whether I can do any paid work, how our other boys cope and how they deal with Noah, and how we find the different places that we deal with such as St Giles, the hospital and school, and about access in the community (or lack of it which is often the case). 

They seemed quite concerned about me and kept asking if I ever get to do anything for myself and if Aaron and I get to spend time alone together.  I told them how hard the first 4 years or so was as Noah was home full time and I didn't get a break then, but how I joined a gym once he started school and how that was now my outlet. 

I also told them how our faith helps us cope with things better too, and how the main thing is to not look too far into the future, but take one day at a time and just try to see the good side of things, even if there are a lot of negatives.  I said that sometimes you can just think about how crappy life is, or how tired you are when Noah is having a bad night, but then you think about how lucky you are that he is still alive and with us and that puts things back into perspective again.   It was really nice to know that they were so interested in emotional and social side of things, rather than just the medical.

They also discussed things like how the diagnosis and prognosis was shared with us, and if it was done well or if it could be done differently.  Noah was awake for the first session and had three seizures while we were there, which was 'good' for them to see as that was normal for him, but slept the entire second session.

It was a really good morning, and it was nice to feel like I could hopefully share something with them that they may use later in their medical career.  I said to Aaron how much I loved doing it and would love to do it again, but it probably won't happen for a while as the focus was mainly on disabilities this time, and it probably won't come up again for another year or so. 

Tuesday, 27 September 2011

Out of Routine

It's been a long 10 days with Noah going to school the first day after school holidays and not being back since. I couldn't put my finger on what was wrong with him as he wasn't acting 'sick' but I just knew he wasn't right, even during the school holidays so haven't been sending him to school even though he's not really 'sick'.  

We are doing a few different things to help him and he's picking up but still isn't right, so we will see if we can get through this week and go back to the doctor again next week. It's always a long day and week when Noah is home from school as it's more of an effort to get out, and it's nicer for him to just be able to rest at home. 

On Sunday Harri started complaining of a neck ache, and by Sunday night he was in tears with it.  On Monday morning he was just about to leave to go to school and burst into tears as he went to turn his head and still had a lot of pain.  I told him to stay home as well, so Kobe and I had both boys home with us yesterday. I rang our awesome chiropractor who fitted in Harri straight away and said his neck was very jammed up and had lots of inflammation and also said his pelvis was out and his hips had some rotation which wouldn't have been helping. She adjusted him and he was in pain the whole time and we are going back again tomorrow.

After going to the chiro we had a couple of jobs we needed to do, so I thought I'd attempt taking the three of them to Kmart and the supermarket just to get a few things.  It's always so easy when it's just me and Kobe as he just sits in the trolley and chats away the whole time, but taking the three of them without Jay was another story!

Harri was walking like a robot the whole time as he couldn't move his neck, and then started crying and complaining about pushing Kobe.   Noah is a lot harder to push than a trolley, so I ended up pushing Noah and pulling the trolley behind me as Harri dragged his feet behind us in tears the whole time as he held his neck. 

Aaron came home from work last night saying he wasn't feeling great, and this morning when his alarm went off he said he really wasn't feeling well and had stomach cramps.  He ended up being home all day today too and spent most of the day just laying either in bed or on the couch.

I did get to go out to the gym this morning as I got to leave Noah home with Aaron, but while I was there I got a phone call to go and pick up Harri from school as his neck was giving him a lot of pain.  He has been walking around like a robot all day as he can't move his neck very much.

It's already been a long week and it's only Tuesday! Hopefully everyone will start to pick up very soon and things will be back to 'normal' if there is such a thing! 

Monday, 26 September 2011

Bobby Jonez

Jalen always surprises us with his imagination and sense of humour. Earlier in the year he started to talk about a character that he had created called 'Bobby Jonez'. It started off just talking about it, then including him in story writing at school and then he decided he really wanted to make some clips about him, and has spent hours and hours making clips using his iPod.

Bobby Jonez thinks he is a bit of a super star and wants to be a singer, but in Jalen's words 'face it - he sucks!'.  For the past 6 months or so Jay has been making video clips and uploading them on YouTube. Half the time we don't even know what Jay is up to when he's making the videos and then he gets us to watch them and check them before he uploads them. The clips absolutely crack us up as he has the funniest sense of humour, and knows how to laugh at himself.

He has uploaded 12 clips in total and you can check them out here.   He has quite a few guest appearances from different people.  Kobe loves seeing Jay in his Bobby Jonez outfit - he always yells 'Hi Bobby Jonez!!' and really doesn't get that it's actually Jalen.  He's obviously meant for the stage in some form or other - it's no wonder he's loving drama classes so much this year. 

This is a little teaser that he put together yesterday.  Don't mind the typo at the end :)

Sunday, 25 September 2011

Footy Pump

There's nothing like drowning your sorrows after Hawthorn loses the preliminary final by three points, than with a can of coke and meat pie that you are given after 'Footy Pump' at the gym.

It's great fun when the gym has theme classes.  It started off with the national anthem...

and also half time entertainment! 

It's always good for a laugh and heaps of fun.

Love my gym buddies.  We had a lovely lunch and catch up afterwards. 

I think Flynn loved hanging with us too.  You wouldn't have even known he was there.

Time to get back to the gym to work off all the yummy food we ate! :)

Friday, 23 September 2011

Olde School

Harri's class at school hs been doing a unit of inquiry exploring the question 'what is changing?'.  They have been doing different things throughout the year such as going to the Punchbowl Reserve at different seasons to see the changes between autumn and spring.  

Before the school holidays one of his teachers asked me if I would like to come as 'parent help' on an excursion to Hagley Farm School.  I was really excited to do it, as I have never been able to do parent help in Harri's class, and have only done it a couple of times when Jay was in Kinder and Prep. I arranged with Mum to help by babysitting Kobe and yesterday we headed off to Hagley.

I wasn't sure how Harri would be with having me there all day, but he was so excited and couldn't wait to sit on the bus with me. 

He asked me on the way to school if I was going to be tired because it was 'six hours'.  I told him I thought I'd be okay, and then he said 'but you are always tired Mum!'. Jay then said 'that's because she goes to the gym too much Harri!'.  I told them it was because I'm always looking after them and all Mums are tired :)

Hagley is an awesome little country school with modern facilities, as well as old original classrooms, vegetable gardens, and a working farm.

The kids were so excited to play in a different playground, before they headed off to be involved in the cottage industries.

They were split into four groups and rotated around the different industries.  I got to stay with Harri's group, and the first thing they did was combing out wool and spinning wool on a spinning wheel.

The next thing they did was churn their own butter.  They loved it as they got to try some of it on crackers.

 They then did some bread making which involved grinding the wheat...

and kneading their own dough before shaping it into rolls.  They got to have their rolls for lunch with the fresh butter that they made on it.

 The last thing they did was candle making which they all loved.

After lunch we were able to go for a little walk around the farm. It's not usually a part of the cottage industry excursion but is another excursion all together, so we knew how lucky we were.

 The kids got to take some food scraps down to the pigs and the new piglets...

 and also got to see the calves.

After seeing some of the animals the teacher who was showing us around, talked to the kids about school many years ago.  She talked about how different things were to now, and how the teachers acted a lot differently to how they do now.  She told them that they were going to go into the old classroom and were going to be doing some drama about what school was like over 100 years ago. Some of the kids were actually a little scared about it as she was demonstrating how the teacher was often very strict and 'grumpy'.  A couple of them even burst into tears! She kept reminding them that it was just going to be pretending and how it was drama and no one was going to get hurt.  They then got into some costumes before heading into the old classroom.  The kids loved it and were all giggling as they marched in.

The old classroom had some amazing old newspapers and books in it as well as lots of things that they used years ago such as old desks, ink wells and blotting paper.

She put on her teacher's outfit and took on the role of 'Mrs Grumpy' which was hilarious.  She kept yelling at the kids to 'sit up straight, feet on the floor!!', and would tell them off for everything and would make them say 'Yes Mrs Grumpy!!' after everything she said.

While she was in role she showed them different punishments that they kids had such as putting their nose on a spot on the blackboard, writing out lines on the blackboard such as "I will not use 'um'", using the cain (she took a child out the back and pretended to give him the cain by hitting it onto a gumboot) and sitting them on the dunces chair.

Most of the kids loved it but a couple of them you could see were really nervous, so she didn't go as long as she normally would with older kids.  She said that she notices a huge difference between the grades and how long they can handle her being in role for as even though they knew it was drama and a bit of fun, it was hard for some of them to believe that she was just pretending as she was so believable and very grumpy!

Harri loved it and thought it was funny that he was getting into trouble for writing with his left hand and smudging his work.

The role play went on for probably twenty minutes or so and was very funny, especially when she called the other parent helper and teachers and myself the 'four dumb girls down the back' :)
This is just a short video of the kids in the classroom.

It was a fantastic excursion and the kids had the best day. Harri absolutely loved having him with me all day and kept putting his arms around me all day saying 'I love you Mum' and just hanging off me all day. It was so nice to be able to spend the whole day just with him. 

It was also nice to be back in the school setting for a day.  It didn't really make me miss teaching, but it was nice to be around the kids all day and especially nice to get home to Kobe and Noah who were happy with Grandma, a clean house and tea cooked! I said I think I could get used to going to work all day if Grandma was home running the house!  ;)

Tuesday, 20 September 2011

Jalen and the Giant Peach

When Jalen started drama classes this year, I knew he would love it.  Every Monday night after drama he jumps in the van all excited to tell me what they had done, and all the funny things that happened durning class.

As the year has gone on he has gone through stages of loving it, and saying he really  wants to be an actor when he 'grows up', to not being so sure about it.  After his 'company' did their first performance in front of parents he was so excited and said he loved being on the stage and that it gave him an 'adrenaline rush' and that when he finished and got off the stage he felt sad as he wanted to do more.

During last term's classes they focused on different skills they would need for their end of year production such as voice projection and posture etc. They then had an afternoon where they all had to audition for production.  This involved learning a monologue and doing it in front of the teachers and the whole company.  They were told that everyone would be given a part in production and that their audition would allow their teacher to see how they take direction and how confident they are learning lines, which would help her determine which part they would be given.

All week we were hounding Jay to learn his lines in his monologue and he kept forgetting about it, but finally knuckled down the day before and got it down really well. He was SO nervous before the audition.  He first of all did his monologue as he practiced it, and then his teacher asked him to do it again, but the second time he had to say it while he was pretending to cry. He said that everyone loved it and thought that he did pretty well.

The production that they are doing at the end of the year is 'James and the Giant Peach' and the kids were told that they would find out their parts before the school holidays.  The teacher was sick the last lesson though, so they didn't find out their parts, but I got an email during the holidays which absolutely shocked me.  It said something along the lines of 'your darling and oh so talented boy is going to be cast as 'James'. I read the email a few times before it really sunk in that Jay was going to be playing the lead role!

I knew Jay loved drama and that he was good at it as his teachers at school kept telling me to get him into a drama class as he was doing so well with it at school. I just didn't really know how well he was going with it. His teacher was so happy with him and said that he really deserved it and that it is going to be a lot of line learning, but she was confident that he could do it and was really excited to start rehearsing with him.  She was so lovely and said he was an amazing boy and that she would do everything she could to help him 'flourish and grow'. 

Last night he was excited to go to class so he could get the script and start running through it with the rest of the class. 

It's going to be a huge term with lots of rehearsals during the week and also on Saturdays, until they put it on in mid November.  They will be doing 5 shows over 3 days including two night shows which are open to the public, and also matinees which schools go to.

Hopefully it will be a really positive experience for Jay.  We are really excited and also nervous for him.  Let the line learning begin! 

Monday, 19 September 2011

A Deacon

Yesterday Jay was ordained a Deacon at church. It was a very special day and he was really excited about it. It was so nice to have all the family come for it, including Chrish who came down from Sydney to be there too.

It's so strange to think that Jay is actually now in Young Mens and gets to hang with these guys every week.  He was very nervous about going to mutual for the first time last week, but had a great time and was it was nice to hear that Jake had taken him under his wing.

After church we took a few photos before coming home to our place for lunch.  It's amazing how many of us there are now!

Aaron was on BBQ duty :)

Chloe was loving hanging out with Harri all afternoon.  The kids had a great time playing together and we heard Chloe say 'this is the best day ever!'.   It made us laugh as Jay used to say it all the time too.

Kobe loves having his cousins come and play so much.  For days he kept going through the list of who was coming.  He kept saying 'Maddie' and then I would say 'and...' and he would go 'Lachie, and Maddie and Eamon and Maddie!'

It was a really lovely day.  We are so proud of Jalen and all the choices he has made so far in his life.   We love you Jay!

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