Thursday, August 27, 2009

Sometimes I wonder...

What if?
I mean, what if there was no seizure activity. What if there was speech. What if Ryley could do all the same things as other kids?

Sometimes I wonder how Braeden became such a helpful beautiful little person. How does he know when Ryley wants his drink? How did he learn to push the chair over to the bench so he can reach all the things he isn't allowed to have?

Today, I had a fairly emotional visit with a family and almost straight after I presented a session about Chronic Sorrow and Family Centred Practice. So I talked about grieving and readjustment and how all families have different ways of coping...
And then I thought to myself: When did I first realise that Ryley was never going to be "normal"? It seems like an eternity ago. And I actually can't remember. I wonder if these means that I am so well adjusted that I have come way too far to even think about it. Or, does it mean that somewhere along the way I have blocked all of that out of my mind?
Probably a combination.
I mean, we all tend to remember things the way we want to. Over time, memories change, so we can't always be accurate in what we recall. The way I tell the story, is that Yes, I definately went through a grieving process, and perhaps one of the reasons I have always coped reasonably well is because:
a) I have always seen Ryley for who he is, not for what the disability may or may not be. He has always been a person first. That has never changed.
b) I have always allowed myself to feel things. When I was sad, I acknowledged it. I might not have proclaimed it to the world, but I proclaimed it to myself.
c) I have always been able to communicate with David. He has always come with me to as many appointments as he could and he has patiently listened and helped with therapies. He has always been my rock. Always will be.

So still, this doesn't really answer when I first realised that Ryley was different to the 'norm'. But I don't know if it matters. Regardless of whether he has a diagnosis of anything, he is just my precious little man. Who now has an equally precious little brother.

Thinking is so overrated.

Thank goodness I am now ready to pack up and head off on our road trip adventure. I will no doubt have lots of stories and photos to share when we get back!

Monday, August 24, 2009

Oh yeah and...

I forgot to say this morning that I bought Ryley a new pair of jeans yesterday which were a size 4. And for the first time EVER. I haven't had to adjust them at all. He just put them straight on!!
How exciting!!!!!!

Not long now

Am finally getting excited about our road trip!!
I have everything organised now and am counting the sleeps (only 5 of them left) until we leave for sunny QLD. As I write this, it is hailing outside, so to say I am hanging out for some warm weather is definately an understatement!
We have had a very busy weekend. Nan and Grumpy came to visit and Ryley showed his appreciation by vomiting. Both the boys have shocking coughs, but are otherwise ok. I am hoping the warm weather might help clear up their chests a bit and we might all get some much needed sunshine on our bodies!

Can't wait to see all our WHS friends!

Saturday, August 22, 2009

Things I love today

-My Saturday morning sleep-in. My beautiful husband hasn't had a sleep-in for years, but because I am up through the night to Braeden, he figures I need an extra hour or so on a Saturday morning. No wonder I love that man!

-Listening to Ryley stomp stomp stomp through the house, as he moves from looking out the window, to his bedroom, to the back door. I never thought I would hear that sound, and it truly is music to my ears!

-Listening to Braeden dragging a chair from one end of the house to the other so he can climb up and open the door to get into me. That kid has such amazing problem-solving skills. It is a bit scary really!

-Coffee. Having it brought to me on a Saturday morning is just so nice.

-Quiet. I love that David takes the boys out for a couple of hours on a Saturday morning so that I can clean the house without them 'helping'.

-Holidays. I am now just about completely organised for our holiday away and I can't wait for our road trip!! So much of Australia to see!

Aaaah Saturday.
Now to finish my coffee, read the paper and then clean the house!

Thursday, August 20, 2009

Why?

Sometimes living in Ballarat just sucks.
I mean, is it really that difficult to ring and order Ketocal. Yes, I understand you "have never heard of it". Yes, I understand you have never heard of the Ketogenic diet. Yes, I do need the Ketocal. It is how my son stays alive. As in, it is his food.
Given that out of nowhere the procedure for ordering Ketocal has changed, with no warning or explanation other than-"oh it's on the PBS now so you have to order it yourself"; and given that the prescription I was sent didn't even have the doctors details on it (therefore looking like I had written it myself), why on earth did I expect the hospital pharmacy to even look half interested in helping me?
Not only did the woman look at me like I was an alien (and true, I do look strange, just ask one of the local paediatricians!), but she screwed up her and nose at me and said "Oh no. We don't order things like that". Good. Well. Ok then.
So I went to my normal pharmacy, who are usually pretty good. And on their part, they weren't as patronising and condescending as the hospital. But still, I had to explain, what the formula was for, and that no there was no other child in town on the KD, that this was a special order blah blah blah blah.

Anyways, as it turns out neurology department have phoned me (I think they think I am dodging something-why I would want to write my own prescription for Ketocal is anyone's guess) and asked me how I got the prescription and who wrote it and when I answered that they said "well it doesn't look like his writing". Well THAT ISN'T MY PROBLEM.
So little Miss pissed off here is going to phone her dietician- who she actually likes very much-and query as to WHY THE F&^K this is so hard now?????

Rant over.
As if I am not stressed enough.
Now I have to jump through hoops to get Ryley's tucker. COME ON PEOPLE get your act together.

Rant really over now.

Monday, August 17, 2009

Another weekend

You know when you are really looking forward to a weekend..there is going to be warm weather, you have things planned to get done, you have a party to go to, and good friends to visit...then you get sick. As in, stay-in-bed, not-able-to-get-up sick. Well that is pretty much what happened this weekend. Not only was I sick, but the boys we up both nights coughing, Ryley vomited Friday night...
Crikey!

I am hoping that we have now gotten over all of our yuck viruses and can now be fit and healthy for our trip away (I can only hope anyway!).
At least David got our fence and gates up. I think nearly all our neighbours have told him what a good job he has done and it isn't even finished yet! It does look great though. Now to put the razor wire up...Just joking!

I can report that I have finalised all of our accommodation for our trip finally. So that is one weight off my mind. Now I just need to get the car serviced, new tires and organise what we are taking..easy..right?!

Weather watch: 29 in Brisbane today! That is so going to feel like 39 to us!
I better dig all the shorts out I guess!

Thursday, August 13, 2009

Blah Blah

I am tired (nothing unusual), stressed (again, nothing unusual) and am fighting a cold/cough croup virus thingy. Blah Blah Blah poor me.

It is only 3 weeks until the WHS conference and that means only 2 weeks until we leave for QLD. Do you think I am organised? Errr...that would be a big fat NO.
Seeing as I am taking leave from work at the worst time of the entire year, I am trying to desperately fit in four weeks of work into two weeks. Which loosely translates as working from home on my days and nights off. In amongst that I have to organise accommodation for our trip up to Tweed Heads (mostly all done, just a couple more nights to go) and as an added stress, I have to organise respite so that Ryley can be taken care of while we attend the conference. I have found that process to be quite difficult and it is STILL not finalised, as I am battling to get a hold of the worker.
*SIGH*
You know, it really is all too hard. As sad as it is, I am not sure we will do this again. It has been really stressful having to organise a carer for Ryley. He has to have a Registered Nurse take care of him because of his uncontrolled epilepsy and PEG feeds. Unfortunately, we don't have anyone who could care for him, which is why we have to organise a stranger and for the government to pay for it. It is going to cost us loads of money to go up to QLD, which would be better spent on other things, like a holiday closer to home.
But we are looking forward to going. It will be great to see our "other" family again and all of our friends. And I know we will have a great time. Just so much to organise...

Last week I had a meeting with the FSO team leader and a student to discuss service options and what was avaliable. No matter how often you go through your story, sometimes it still is amazing when it is written down on paper just how much your life is so very different from everyone elses. On paper, Ryley is so very severe. We don't see him like that because, well, he is just who he is. There were so many times that the workers were just speechless and didn't quite know what to say. One of the things that really struck me as something I haven't thought about, is what would happen to Ryley if David and I died. We don't have a will, though even if we did, we would have no one we could leave Ryley in the care of. He would end up a ward of the state and would end up in a community care facility (unless there was some family out there who would take him in-though that is about a 1% chance of happening). How crap is that? Braeden would end up ward of the state too, but at least would have the opportunity to enter into foster care and end up, hopefully, with a permanent care family, though he wouldn't be able to have contact with Ryley until he was old enough to seek him out.
What an eye opener. Something we now need to start thinking about.
Blah.

On a more positive note, Braeden used the potty for the first time this week. Clever bugger. Ryley also signed and requested 'blocks' (his own version) which is very exciting!!

Sunday, August 9, 2009

Fun and busy weekend




It was slightly warmer this weekend so we took the opportunity and stayed outside for most of the two days!
Saturday we spent the day making a start on our front fence and Sunday we went out to Amphi because a heap of trees had fallen down around Mum and Dad's which we needed to clear. We also had a little bonfire. OK. So maybe not so small.
Both the boys had lots of fun and were very tired. Although, as I write this, it is 8:30pm and Braeden is still up playing.

Friday, August 7, 2009

Toddlers..who would have them?



Yes, this is my 18 month old caught in the act of trying to finish the picture he started this morning while I was out putting Ryley on the bus.
Yes, he doesn't care that I have caught him.
Yes, he will sneak back there when he thinks I'm not looking.
*Sigh*
Lucky it isn't in the new extensions part is all I can say!

Thursday, August 6, 2009

Prayers needed

For those that pray, please keep one of our precious little WHS people in your prayers this week. Allissa Carbone from Western Australia is currently in ICU on life support.
To Sami, Leo, Sophia and Allissa, please know that we are all praying for you and hoping that Allissa gets well again soon.

Tuesday, August 4, 2009

Makaton


Last night I started the Makaton training course that my work was offering to parents and people who work with children with disabilities. I went along for a couple of reasons:
1. Because of my role as Social Worker/Family Service Coordinator, and
2. Because I really wanted to learn the signs for my own personal use.
I am lucky that the Speechie running it let me slip in!

So what did I learn, and what the hell is Makaton anyway?

Makaton is an alternative form of communication that is mainly used to assist children with disabilities. It is not often used as the main form of communication, as the idea is that children can either use speech or some picture cards or even a communication device.
Speech is such a difficult motor task and takes a lot of planning. Not only does it require your brain to send the messages to your mouth, but you also need your lungs to work, your tongue, your jaw and your mouth. Hard work when you have low muscle tone, seizures to contend with, and a body that doesn't do what it is told!

Makaton uses key word signs to assist a person in expressing themselves, as well as helping them understand what someone is telling them. Most people are visual learners, and often the spoken word is forgotten as quickly as it is heard. This is particularly true for kids! By having the key word signed as well, you are giving kids a much better chance of understanding, because a visual can last as long as you need it to.
Starting to make sense?

Makaton doesn't work for every child with a disability. Your little one does need to have some ability to form the signs with their hands. In Ryley's case, he doesn't have the motor control to coordinate the signs, but he can do his own version of some of them, and I know with practise everyday of the main ones, he will get there!

The other thing I have noticed with Ryley is that his understanding is so much better when I use key word signs. So for example, he is responding really well to the sign for "wait". Great when encouraging turn taking during games!

If anyone is considering Makaton to help give their child an opportunity to communicate, then please ask the important people in your lives to learn the signs too. There is no point in giving your child this great tool for communication if they can only use it at home with one or two people. It's like telling you that you can only talk at home, all other times you must remain silent. How on earth could we get our point across?

We don't expect that Ryley will ever be verbal. We know he can't. He has too much damage done to that part of the brain (from the seizures). But we are really trying to help him communicate. Hopefully this will help a little.

For more info either ask your speechie, early intervention centre or visit: http://www.newcastle.edu.au/centre/sed/makaton/

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