Welcome

. . . in all seriousness, thanks for stopping by! This blog will no doubt evolve over time, and will include all sorts of content. My aim is to let you know what we're doing as a family, how I'm coping as the mum of a child with Cerebral Palsy, and a variety of other things too.

If you are the parent of a special needs child, I pray that you will find encouragement, hope and support within these posts. I'd like to get to know your story too, so be sure to leave a comment.

I hope you'll come back soon.



Showing posts with label Reuben. Show all posts
Showing posts with label Reuben. Show all posts

Sunday, 17 March 2013

Christmas/Summer Holidays 2012/13

Christmas is always a fun time when you have little ones.  The one just gone was no exception.


We had a family gathering at our place with Phil's family, then I took the boys down to Mum's while Phil got organised for our camping holiday.


I made a big decision, and decided that Isaac didn't need to take his walking frame.  So Phil packed the van, and we headed down to Timaru.  There is a carnival at the Bay every year, including an amazing fireworks display on new years eve.


We had a great area for camping, away from a lot of the traffic.  Uneven ground and shingle drvieways, were a challenge for Isaac, but by the end of the week, he had mastered them.  Reuben mastered his challenge of riding his bike.  I'm so proud of both boys.


A friend of Reuben's camped there for a couple of nights, and the boys were all out playing spotlight on new years eve before we went down to the carnival.  Both Reuben and Isaac had new flashing shoes, so we were able to see exactly where they were during the game.


A lovely relaxing time was had by all!



Sunday, 10 March 2013

Sunday morning


We all know that getting out the door on time in the morning can be a challenge, even if it's on the weekend to get to sport or church.  Even if the kids behave it can still be a challenge.




Dad’s Pool of Peace – by Phil Brewster

I got out of the shower
The boys own the airways with disobedient fun
Has Isaac’s nappy been changed?
I…Shoooosh Reuben I told you, I need to hear mum,
Now what did you say?
Yes but the boys need to do their teeth
Reuben interjects, but we haven’t had breakfast.
You said you had breakfast!!!!
No – well I had 5 weetbix
5?!?!?!?
Well I was hungry – and I gave Isaac one too.
Well... that’s breakfast
But we didn’t have milk on it!
It still counts as breakfast! Did you have five weetbix without milk??
Yeah-s
Well… you’d better go and have a glass of water,
or your poo pipes will block up!!  And it will really hurt.
Big eyes, gulps water, a moment to think, time to eat.
They’re moving to the door now.  I don’t want to go
to church today I say.
Fine, then you can hang the washing out, and thanks
I could have had a shower.
Bye Dad… the door shuts… I’m still… standing…
Now my heart slows… silence…
The clock ticks, welcome
The kids have gone
And a pool of peace wells around me
My legs say sit, the jugs boiled
But I dare not break this moment.

Sunday, 13 January 2013

Watch out 2013, here we come

It's hard to believe that 2013 is here already.  I feel like I have been incredibly slack, reading hardly any blogs over the last couple of months, and writing no posts of my own.


In my defense, there has been a lot of things going on over the past few months. I was struggling with the necessary change in mindset between working in a high performance sport environment, and then being at home with a child who has physical disabilities. The company that I work for was in the process of restructuring.  I decided, since I'd been there for 5 years, that it was time to look at moving on.  After numerous applications and interviews, I secured a position as financial administrator at the Cochlear Implant clinic.  I've been there for a couple of months now, it's been a steep learning curve, but I'm really enjoying it and am slowly getting my head around everything that this job entails.


We've been having problems with Reuben's behaviour over the past few months.  I was getting really bad - hitting, kicking, biting, swearing, name calling, throwing things, etc.  I was finally able to get some help to put some strategies in place to help me deal with and diffuse the behaviour and the anger.  A lot of kids in Christchurch have been having problems due to the ongoing stress from the earthquakes.  I wan't sure if that was what caused Reuben's problems, or if it was because he was a 6 year old boy, or because he had a younger brother, or if it was because he had a sibling with disabilities.  Probably a combination of all of the above in varying degrees at any one time.


I went to a session at school that was put on with clinical psychologists talking about what to do with kids that have been suffering from ongoing stress.  It was an okay session, but I was pretty down by the end of the session,  To be honest, if it was just the earthquakes I could handle that because I know that they're not going to be forever.  But it really highlighted to me that Isaac's disability was going to be ongoing, like for the rest of his life.  Not quite what I was hoping to get out of the evening.


I've been talking with various people who read my blog, and it has been really encouraging to hear some of their comments.  One couple in particular, we met at the mall one weekend.  They said that it was great how not only did we get Isaac out and about, but also that we were open with other people about the experience we were going through.  Now, any of you who are reading this at the moment who have special kiddies, will know that as a blogger you don't put everything you're going through in your posts.  But I'm pleased that I'm able to give people a bit of a glimpse into our Tutti Frutti life.


One of the additional benefits that I've received from having Isaac at Champion Centre, is the connection that I've been able to make with other mums.  I never realised how isolated I was until I hooked up with a group of champion mums (past and present) who go out to dinner and socialise once every six weeks or so.  It's great being able to share experiences and concerns with others who are on the same page and a great excuse for a night out.


What's Isaac been up to, I hear you ask.  Well, let me tell you just how fabo this little guy is! Each week at his therapy sessions he works really hard.  So hard in fact that he can hardly keep his eyes open on the two block drive from Champion centre to preschool.  The therapists and teachers all say how much of a pleasure it is to see him each week.  He has worked so hard and progressed so well, that he is moving to a different session when classes resume after the summer break.  This year he will be going fortnightly instead of weekly.  There's some down sides about that - not being with friends and teachers that we know and no computer sessions :( But on the plus side - meeting new friends, new challenges, new teachers.




We had some new front steps installed.  The rise was too deep for Isaac and he struggled to walk up them by himself.  Now, although they come out a lot further, each step isn't as deep and with that combined with the handrail that got installed at the same time, he can now walk up and down the front steps by himself.  It also means that he can go out and play with Reuben or the neighbours without the need for me to stop what I'm doing to help him down.


Mid December Isaac had an appointment with the Paediatric Neurologist.  He'd been referred by his neonatal consultant, who had also said that she'd be passing him on to the developmental paediatricians. When we met with the neurologist, he said to us that since we'd been referred to him, there wasn't much point in seeing the developmental paediatricians too.  So he would take over managing Isaac's case.  Sounds like a good plan to me.


Over the last few months, Isaac has been relying on his walker less and less.  The week before Christmas, I decided that he didn't need to take it to preschool.  Most of the time he's dump it anyway, and we'd have to go looking for it before we went home.  Going to the mall has started to be easier (and quicker) if he holds my hand, or walks independently if there aren't many people around.  Result - he hasn't touched his walker in  4 weeks!

Bye for now, I'll be back soon with more on Christmas and our summer holiday...

Monday, 10 September 2012

I'm baaaack!

No, I didn't drop off the face of the earth, I've been finding things a bit tough going recently, hence the lack of posts.  A dear friend told me a couple of weeks ago how long it had been since my last post....
Starting with the anniversary of my Dad's passing.

We've been having some behavioural issues with Reuben.  He's fine at school and his after school programme.  But at home, well that's another story.  Hitting, kicking, biting, throwing things, breaking things.  Poor wee Isaac gets terrified when Reuben gets like that.  I get bruised.  But I'm not giving in, I will continue to discipline him, and not allow him to behave with such disrespect! Mum has spoken, you have been warned!

Work has been difficult, restructuring which is going to take a total of about six months to complete, in addition to other things which I am unable to talk about here.  So I've started having a bit of a look around to see what other opportunities are around.

After I got over the flu, I've ended up with the hundred day cough which seems to be doing the rounds in Canterbury at the moment.

On a positive note, we've hit spring big time.  And I've started getting motivated to do some baking with the boys.  Been doing something each week, and because we've got a convection microwave, I don't have feel guilty about heating the whole oven just to cook/bake one thing.

I have missed international Cerebral Palsy day which was also the second anniversary of the first of the earthquakes - September 4th.  We've had over 12000 earthquakes in the last two years.  But we did just have a stretch of 10 days where there were none at all - it's a bit surreal that a statistic like that is a milestone!

Isaac has been a star.  He's making fantastic progress with his walking.  He is only using it at preschool intermittently, and occasionally at the mall.  His motor control for feeding is improving.  He now has a special raised chair that he uses at the table.  I was initially a little wary, thinking that it would create more mess, but actually it's been okay.  Balance is getting so much better and the exercises that he's doing at champion centre have lead to him being able to jump off his chair (when I hold his hands) knees bent and everything.  Yeah, I'm a proud Mama.


The next few weeks are going to be hectic. Why is it that all the apppointments end up happening within a couple of weeks of each other? Isaac has his first IP this week.  I'm kind of nervous about it, but at the same time quite excited.  He has come such a long way in such a short time.  Optometrist appointment which we've had to wait 3 months for.  Appointment with Paediatrician - I think she is going to be impressed with our little guy. OT home safety assessment, and Lifelinks assessment (my best advice for people is to get into the system as soon as you can, that way you can access as much funding, etc as possible). Add in some interviews, a couple of staff leaving lunches, pamper day, Silver Ferns test.

We were really fortunate to be able to get our house insulated with batts (under floor and ceiling). It has made such a difference and although we've past the worst of winter and headed into spring, I think that we're going to notice a difference through summer and into next winter - YAY for saving money on Pellets for the pellet burner!

If anyone knows how to do a circular or oval crop, please let me know.  It's something that I haven't had time to figure out - or maybe I don't have the correct software.  We're not allowed to put photos of champion centre staff on the net, so I've improvised.

A group a mum's from champion centre have started getting together for dinner once every month or two.  Last time was the first time that I'd been, but I figured if I don't do it now, I'll wimp out later too.  I got my friend Cushla (also a Champion Mum) to come with me.  We had a great time meeting new people and eating great food.  Some of the mum's are graduates, so they know what we're going through. It is crazy how ordinary people end up going through an extraordinary journey for their child.  

I have been amazed a the courage of parents I have met online from around the world.  There are a couple of people from the UK and Australia who are raising awareness of the newborn cooling which Isaac had at birth.  I watched a story on tv tonight about an amazing father with a child who has cerebral palsy, it was really inspiring.

Until next time, and I promise that it won't be so long

Thursday, 26 July 2012

Through the Lens Thursday

I'm starting to get the hang of this photo a day thing, and quite enjoying coming up with photos for each day. Now I just have to get a life, so that my blog has a chance of being interesting!


Animal/insect/pet
Take a photo of a little critter or a big critter today.
Had a visitor in the office the other day - I'm not really a dog person (or a cat person for that matter).  The only reason I took any notice of the pooch was because I suddenly remembered that I needed a photo of an animal.  Don't hold it against me, I'm sure that there is something you don't like that I do :)

Eyes
Take a photo of eyes, on you, someone else, a pet or even a toy.
Cheeky little monkey - you can just see the mischief in these eyes.  Both of my boys have lovely blue eyes.

9 o’clock
Take a photo of what ever you’re doing at 9am or 9pm. Your choice.

Washing, washing and yet more washing to be folded and put away.  Sometimes it feels like this is never ending and that all I do is washing, dry, fold....


Upside down
Take a different look at the world.
Take a photo upside-down or of something upside-down.

Isaac loves it when Daddy throws him upside down.  Reuben used to, but has grown too big.


Mirror
Take a photo of a mirror, or your reflection in the mirror.

When Isaac has his music therapy there are various mirrors around the room so that he can see what his body is doing and so that I can see his reaction to the activities that he's doing.


A stranger
Be brave or sneaky. Take a photo of a perfect stranger.

There are some strangers in the background of this photo!  We took this while away on holiday at Christmas. Tiny town at Splash Planet in Hastings was a huge hit, as was the gondola and luge in Rotorua.  I think that the thing that I appreciated most about our holiday was that we were away for the 5.8 and 6.0 earthquakes that hit Christchurch again on 23 December 2011.

Heart
Take a photo of a heart.
When a saw this necklace a couple of years ago, and thought it was so pretty, I just had to get it.  Love it when the sun hits the glass and the colours in the refracted light shine through.

Friday, 20 July 2012

Through the Lens Thursday

When I was getting prepared to write this post, I started getting really confused. The subject matter didn't correspond to the pictures I thought that I was meant to have. Turns out that two weeks ago, I couldn't count to seven! So this week I am intentionally adding an extra photo.

Letter
Take a photo of a letter, perhaps one you get in the mail, one you wrote or even a letter from the alphabet {in a sign, or in a book or somewhere else!}
Reuben's birthday ended up being spread over three weeks.  There's nothing like getting home at the end of the day and finding a package sitting on the doorstep.

Texture
This is a toughy! Take a photo of something with texture; carpet, wood, a painting anything that has texture.
You may have noticed Isaac wearing this beanie in other photos.  It was actually given to Reuben last
winter as part of an initiative where people around the country knitted hats/beanies for kids in Christchurch.

Open
Take a picture of an open sign, or something open; a door, a jar, anything that can be ‘open’!
"ROAR!" Watch out I'm going to eat you all up.

Building
Take a photo of a building you see. It could be a big or small building.
 Reuben decided that he wanted to put stickers on his shirt.  Not sure about the motor bikes and boat in the sky among the buildings, however the airplane was positioned perfectly.

Finger
Take a photo of a finger, yours, someone elses, a finger sign or even a toy finger or sorts.
 I will admit that I cheated on this one. When Reuben was a baby, we got some photos taken, and this one was just too cute not to include in this post.

Sign
Get creative! Find a sign {a street sign, someone doing sign language or even a sign of fate!}
Created by the amazing Rachel, this mosaic was made from broken crockery on the anniversary of the February earthquake. It is displayed in one of the windows in our church.

Your Addiction
What’s your guilty pleasure? What do you love? What are you addicted to? Share it!
I was having difficulty thinking of what to do for this photo, then I realised that one of the things that I enjoying a lot is hanging out at the mall.

Plate
Take a picture of a plate, with or without food on it.
Because we live near the beach, I have quite a bit of beach themed crockery.
Sorry that this post is a bit on the short side today, but it is getting really late, and I still need to get a few things done before I can call it a night.

Monday, 16 July 2012

Slackness & a VERY late Through the Lens Thursday

I am slack, slack, slack! No posts in almost two weeks is not the way to win friends (readers) and influence people.

After a week in bed with the nasty bug that's doing the rounds and a week of trying to recover, get back to work and get the house operational again, I am starting to feel like I've just about returned to normal - well as normal as I can be! I'm so pleased that I had Reuben booked in for holiday program, and Isaac at preschool. Over the holidays, I try to let the boys have a bit of a sleep in in the mornings, so we're not out the door as smartly in the mornings as we are during term time, but on the other hand we can't just laze around home all day either.


Since I last updated you, Isaac has been doing amazing with his walking. Not only does he not use his walker inside the house any more, it usually gets ditched when he arrives at preschool (although it's good that he still has it if he needs it or is having a 'wobbly' day), Champion Centre he used it for walking into the building and walking out again - he flew solo the rest of the time, at the weekend we went to the mall (this time across town to Riccarton, which is significantly bigger than the others in the city) and he went the whole length, twice with his walker! I can tell you, he's been having great afternoon naps after all that exercise. He is getting more and more stable, and has figured out how to regain his balance if he's walking along and starts to loose it. I am just so proud of the little guy! His determination is inspiring.

Reuben has now lost his two front teeth (bottom ones), I guess mid-winter Christmas is nearly as good as Christmas.


Here's last weeks Through the Lens Thursday....

Fun 
Shoot a picture of something fun or something you enjoy doing
I could watch Isaac play for hours. He is such a happy content wee fellow. My heart just wants to melt when I think about him. And, if I think about what could have been, my heart wants to break. But we are making the best of everything, and are constantly asking the Lord for His strength to keep us going.

On the floor
Take a picture of something on the floor. Your feet, patterned tiles, toys, grass – what’s beneath your feet?
I had a lot of help from my sister and niece when I was sick. Reuben was also really helpful, one night he got Isaac ready for bed - nappy, pajamas, teeth, prayers. What a great big brother.

Chair
Take a photo of a chair you see in your travels or at home/work/school etc.
Sometimes as a special treat, Reuben and Isaac like to sit in Daddy's recliner and watch cartoons. There is just enough room for both boys on here, but this particular day it was Isaac's turn.

Garden
Take a photo of a garden, yours or someone elses!
Ok, it's a fence rather than a garden. Every time I drive down this road, I am astounded by how much this fence has sunken due to liquifaction (terms like this come up in everyday conversation in Christchurch).

Lunch
What’s for lunch today? Take a photo before you eat it!
Lunches are a bit of a production line around our place. Each night, the sandwiches, fruit, and snacks are lined up, wrapped, packed, and ready for the next morning. Sandwich content ranges from jam or peanut butter through to cold meat and salad. What goes into your lunch boxes?

Big
Take a photo of something big. Perhaps make it look bigger by getting down low and shooting it looking up?
As the city continues to undergo massive changes, there is more and more heavy machine coming in. Durham Street has only just reopened, and this is what I saw driving to work. That is one BIG crane.

Your favourite colour
What’s your fave colour right now? Take a photo of it.
Saw these in the shop the other day. Love the colour, and the style, am thinking I might need to make a return visit!

Tuesday, 26 June 2012

Happy Birthday Reuben

This year for Reuben's birthday we decided that we'd have some of his friends come over for some games, dinner and a sleepover.  We were blessed with a fantastic, unseasonably warm day.

Phil was in charge of the games - having worked as a youth pastor for many years, he has loads of games to call on at a moments notice.  For the party he decided on food games.  Although it was a toned down version of what would normally be called food olympics, because this was a group of five and six year olds.

After tossing marshmallows and catching them in their mouths, the kids then threw them all at Phil (food fight style).

The trampoline is always a great attraction, we knew that getting the largest available was going to be a necessity with a family of boys.

Boysenberry drop: open one can of boysenberries, drain of juice and drop boysenberry into volunteers mouth.  Phil and I did a demo for them, but they weren't too keen on this one.  Isaac, however, was up for the challenge!

Reuben was not about to be outdone by his little brother.  You'll notice that we werre responsible and covered their clothing.

Hotdogs and chips all round.



Chocolate mud cake, mmmmm.

All in the bed and the little one said . . .

All Blacks third test match was on that night, so the boys put their haka skills to good use after the national anthems.

None of the boys were able to stay over, but that didn't stop the fun.  Reuben, Isaac and Phil had a sleepover in the lounge.

Happy Birthday Reuben, I love you buddy.
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