Thursday, April 30, 2009

How Does Your Garden Grow?

Old Jack Frost has claimed his first casualty last night. In the second picture in the front of the frame, you may be able to make out the dead pumpkin plants. Considering it was -3 overnight last night, we are surprised that that we only lost one lot of plants.
The surviving plants are: Broad Beans, Chives, Silverbeet, Broccoli, Cauliflower and Strawberries!
Oh well, now we know that pumpkin really shouldn't be planted in autumn like how the instructions stated!

Both the boys are enjoying the garden, and do like to check on things.Braeden tends to like throwing the straw out and Ryley tries to pull the plants out, but hey, at least they are interested...sort of! We still plan on building another vegie garden box, just have to wait until David can find some more wood. The second vegie box is made from an old bridge that he had to remove as part of his job. So has anyone else had success (or not) with planting vegies? The strawberry plants have come from Veronica who is a much better gardener than me! So they were very healthy to begin with.
Fingers crossed we can continue with our bumper crop and be able to reap the benefits in no time...!

Wednesday, April 29, 2009

What is 'Chronic Sorrow'

Lately I find myself using this term a lot when talking to clients.
(For those that don't know, I am a social worker and work with children and families who have a child with a disability/developmental concern).
Chronic sorrow is often described as a natural and normal grief reaction that changes throughout the course of your life. Parents who have a child with a disability, whether they realise it or not, all could be described as having chronic sorrow.
Big call to make?

When you first realise something is wrong with your child and then subsequently get a diagnosis, it is assumed that you go through a normal process of grieving and then you are ok. Acceptance is reached and you are expected to function the same as everyone else. I mean, you just have to 'get over' your dreams and get stuck into therapy because otherwise you aren't coping, you are depressed and you are failing your child even more?
As if the thought of going through a normal grieving process wasn't enough, people actually expect you not to ever feel sad again.

A sociologist by the name of Simon Olshansky (1962) challenged the notion of grief and it's relevance to parents who had a child with a disability. He believed that parents needed to give themselves permission to feel and acknowledge that there would be times that they felt overwhelmed and sad, and that there should be no set time that they reach a level of acceptance.
Many parents find that there is pressure from people (family, friends, professionals) to not ever feel sad, and to get on with things and ensure they are doing lots of therapy all the time.
Parents who have a child with a disability are seen as not coping if they cancel appointments, don't catch up with friends or avoid social outings with family.
This is far from the truth.

In fact, it is essential for parents who have a child with a disability to recognise the need to really allow themselves to feel sad. Embracing the sadness, or anger, or the feeling of not coping is crucial for them to maintain a sense of "normality".
There are plenty of triggers for the feelings of sadness, and many people wouldn't know that simple things like starting Kinder or School, having another parent compare your disabled child with their neurotypical child, a visit to hospital, doctors results, assessment results..etc etc etc. all can make a parent who has a child with a disability feel overwhelmed with emotion.
But this is OK!

In this very brief blog entry, I am trying to highlight the importance of allowing yourself to feel your emotions. Often I have days where I shut out the world. I cuddle my boys (all 3 of them) and ignore everyone else. Usually because something has happened to trigger my feelings of sadness. I accept and acknowledge that is normal and healthy and that I am not depressed or not coping. I am actually strong and mentally stable (more so than lots of people probably).

So if you know of someone who has a child with a disability, don't worry if they cancel a catch up. Sometimes it is just too hard and they need their space. If you have a friend who seems sad, let them talk about it (if they want to). If you have a child with a disability, don't be afraid to just cry if you need to, ask for time out to gather your thoughts, communicate how you are feeling with your husband, partner or friend.

There are some great links on the internet if people want to read more about chronic sorrow. I have only really briefly touched on it here and haven't even talked about the grieving process that all families go through. It is a process that is very different to those that experience a death of a loved one, though the basic principles can be applied.

After all of that, I am off to make tea and to cuddle my gorgeous boys xx

Monday, April 27, 2009


Winter has arrived in Ballarat early this year.
Not that anyone is ever surprised when I say it's cold here in Ballarat. The town is renowned for its freezingness (if that is even a word).
Yesterday it reached a grand old top temperature of 11 degrees, and for the most part, it hovered around the 6 degree mark. Considering it isn't even winter yet, it is a little chilly.

Not much to do when it is cold. Both the boys go stir crazy being inside, but given the fact that Ryley already has a cough, we really didn't want them going outside. So we took them for a drive out to see Nanna & Poppa out in Amphitheatre. Ryley vomited AGAIN, so we didn't stay too long.

He has gone to school today, complete with his St Kilda jumper. All his friends on the bus were asking him about his jumper and seemed to all want to say Hello at once! I think Ryley felt like Mr Popular today!!

It is still cold today, and I am trying to keep the wood heater stoked up and roaring.
I do really love the cold, it just takes me a bit to get used to it!

Friday, April 24, 2009

So tired

For Ryley, being overtired means he vomits. And last night that is what he did.
Poor kid.
He has been back at school for only 4 days and he is so very tired. He never likes to just sit and do nothing. He would rather be on the go and involved in everything. So quite often, his little body just says ENOUGH!
Ryley has severe Gastro-Oesphaegeal Reflux Disorder (GORD) which he has been medicated for since he was about 10 months old. He is on a very low and only therapeautic doses of Donperidone and Losec. They actual doses have not changed since he first started. So the idea of not changing anything is that eventually, he will grow out of the medications and hopefully avoid anything like a Fundoplication.

So when he is exhausted, his body reacts by vomiting.
We are used to it now, but the poor little kid gets really upset still.
REMEDY: Lot's of cuddles until he falls asleep (Dad's ones seem to be best at the moment!).

Perhaps he was excited that his Mum turned 30+1 yesterday? Another non-eventful birthday which made me a year older. I did actually have a lovely day. My boys all made me feel mreally special, which is what having a birthday is all about. There was no real fuss made, just little gifts and flowers from David which he had sent to my work. Perfect.

And yesterday brought with it the rain! Lovely cold rainy weather and we will snuggle tonight in front of the fire.

Let's hope Ryley can get a good sleep and possibly even a sleep in tomorrow! He certainly needs it!

Tuesday, April 21, 2009

A word?

Forgive me for getting my back up a little, but there is something that is bothering me lately. Perhaps I have been living a sheltered little life out here in rural Australia...or maybe it's just that all of a sudden it's cool to be politically incorrect.

When did the word 'retarded' start re-emerging? Did I miss something? Is it really not used now in a derogatory manner?

Didn't think so.

I seem to have been bombarded with it lately. In emails, on Facebook, in the street, amongst people I know...Seriously...are people so blase about they say that they don't even realise what they are saying?

A 'retard' or 'tard' is not a funny or cool way to describe someone. People with disabilities thought they had lost that tag a while ago. Clearly though, people are still using this term in a manner which I am not comfortable with.
But it isn't about me.
Or is it?

Every time I see it mentioned or have to listen to someone call another person a 'retard' or "gee, that was retarded", I cringe. I feel this little pang of hurt, which becomes anger, and then embarrassment for the person using the term. I wonder if people would ever call Ryley a 'retard'? More to the point, would they dare?

I acknowledge that in many cases, political correctness has gone mad. Baa Baa Rainbow Sheep is something I had a giggle at. However, for many black people, the word 'black' has the same connotations that 'retard' has for people with disabilities.
So where do we draw the line?

Personally, I draw the line at referring to people with disabilities as anything less than the beautiful human beings that they are. A person who has a disability is no less of a person than you or I. They simply have different abilities.
I detest the use of words like 'retard'.
I hate how people are afraid of disability.
I am dismayed by people who can't extend their vocabularly and refrain from using people with disabilities as the butt of their jokes.

Monday, April 20, 2009

Back to School

As much as I dread school holidays, I actually hate it when Ryley goes back to school.

The first week Ryley spent with David at work which he enjoyed thoroughly! The second week was spent with his little cousin Talia; playing in the park with his friends Zoe, Jack & Toby; and then out on the farm at Willaura with Veronica and Tyler. In amongst all of that we have pottered around the garden planting things, and he has spent a fair whack of time on the trampoline and swings (and getting into mischief/fighting with Braeden!).

This morning, he seemed nervous.

I think he got a little confused about where he was going until I got his school bag out. Then he seemed happy and waited at the front door for the bus (which was late!).

He didn't even say goodbye to me.

Braeden and I waved and waved until the bus turned the corner, but all we could see was Ryley's little head looking the other way.

I don't know if he was mad at me, or if he just wanted the bus to keep moving.

I have really enjoyed the past week having both of the kids home. Hard work, but oh-so-much fun!

Wednesday, April 15, 2009

Brother stuff

I love watching the boys playing together.

Braeden is still at the stage where he is happy mostly doing his own thing, with just a little bit of pretend play thrown in when he feels like it. Ryley has never really been able to participate in pretend play, even though he has always desperately wanted to. He has always had to rely on me to be his arms and legs.

Yesterday, was a little bit different.

Seeing as we have lots and lots of cars and trucks, we decided to put them to good use and start building some roads. Braeden helped for a while then went off to climb rocks while Ryley started filling up one of the tiptrucks with stones. I had to help him, but together we made roads and started driving trucks and cars on the roads.

It was so much fun and both the boys absolutely loved it! Braeden was running around with a car in his hand making "brrrmmm brrrrmmm" sounds and Ryley was pushing the trucks by himself.

Hot work in the end and after a big drink of water, they both lost interest.

Monday, April 13, 2009

Easter Time!

This year Keto Meerkat (as pictured with Braeden) made good with his promise and delivered some cool alternatives to chocolate eggs! Both the boys were lucky enough to get some PJ's each and some books and even a DVD! Both kids loved reading the books and watching 'Happy Feet' on DVD. Chocolate missed? Not one bit.
How did we spend Easter?
We spent the whole day outside cleaning up the yard and playing with worms and dirt! Lot's and lot's of fun!!

Friday, April 10, 2009

Good Friday

We love Good Friday in our house. It is a day that is dear to our hearts.
Not only does it mean hot cross buns for breakfast and fish and chips for tea, but is also the day that Victoria digs deep and donates to the Royal Children's Hospital.

We often refer to the RCH as our 'second home' and are known throughout the hospital as 'frequent flyers'. I can't say that we are proud to have such a strong association with the hospital, because I would much rather we didn't have to spend so much time there. But we do consider ourselves very lucky to include in our team of specialists some of the top doctors in the world.

The thing about the RCH is that despite the fact that there are so many sick children in there, it does feel like a home away from home. The staff do a wonderful job and we are very grateful to them for their part in our journey.

I am looking forward to settling down on the couch in front of the wood heater and watching the TV telecast of the Appeal until I fall asleep (or Braeden wants a feed!).

Thursday, April 9, 2009

The Keto Meerkat

This year the Easter Bunny has handed the reins over to his very good friend the Keto Meerkat. Easter Bunny (EB) usually only delivers chocolate eggs and doesn't have much time to deliver special orders. So he has asked Keto Meerkat (KM) to help him out.
Keto Meerkat first came onto the scene last year when Ryley started the Ketogenic Diet. He has been on many adventures, including a sleepover in the Starlight room at the RCH.
He is Braeden's pride and joy.

When first approached to help out, KM was more than happy to oblige. He knows that there is no room for chocolate in the Ketogenic Diet, and he realises that Braeden is just too young to eat such sweets.

We will have to wait until Easter Sunday to see what KM delivers, but it is sure to be special.

Wednesday, April 8, 2009

A different kind of normal.

I don't really like the word normal.
To me, it typifies everything I never wanted to be. It is what everyone strives for, because if they aren't 'normal' then they are different.
People fear differences because they don't understand them, and often they use the excuse that societal pressure prevents them from accepting things which aren't normal.

So what am I talking about?

I would like to think that my children will grow up thinking outside the square. Ryley has a disability that prevents him from doing lot's of things, but it doesn't mean his life is null and void or that his life is not equal to anyone elses. He is able to do a million other things, often though, we just have to be creative, and we need to work harder as parents. Ryley needs to accept the help as well, and sometimes he really doesn't want his Mum sitting with him to help him participate in things.

Braeden is already a 'helper'. At the age of 15 months he already understands his big brother needs extra help. This is not something we have taught him, in fact, we would hate for him to think he has to take on that extra role, but he intrinsically knows that his body works better than Ryley's. Some of this is learned through observation, but Braeden already understands that although we strive for a sense of 'normality' in our household, we will always be the exception and this is a different kind of normal. Braeden needs to have his own life too. He needs to not miss out on opportunities. This is, partly, why he goes to childcare. So he can mix with kids his own age and have the social opportunities to make friends and become his own person. Kids needs to socialise and I am not a playgroup type of mother, so childcare is the next best thing in my opinion. Braeden feels important because he already is starting to develop his own identity and is discovering where he fits in the world.

How wonderful it was on the weekend to take both the boys up to Lake and to let them both just run where they wanted. Both David and I had to stay close in case one of them fell over, but we loved watching them both walking independently down the path. Yes, Ryley got annoyed that he couldn't see any cars; yes, Braeden wanted to destroy the lovely plants; but it felt like such a typical family outing! It has taken us 7 years and the arrival of Braeden to finally feel like we can stop hibernating! We may not have a 'normal' life. But it a wonderfully different kind of normal. One that I always hoped I would have!

Tuesday, April 7, 2009

My beautiful boys

Braeden is now nearly 15 months old and Ryley is now 7 years old! They love each other so much, but also fight!
Here are some pics:

Braeden loves to help Ryley!

It's time.

It is definately time to start a new blog for Ryley.
So many people around the world relied on his blog, and so many people took the time to email me or send me their stories.
Ryley has changed so much and of course so much has changed in our lives.

So WELCOME to our new blog:

'A Blog about a Bloke-living with WHS'


Related Posts with Thumbnails