Monday, February 28, 2011

I did a bad thing

And I feel awful.

It's the kind of thing I never do.
Ever.

After swimming today, I took Braeden into one of the Disabled/Family changerooms to save time.

I know, I know. I can hear the outrage now. And believe me, I feel guilty as all get out.
The whole time I was in there I was thinking, what if someone comes along and needs it more than me and has to wait because of me.
I think we were in there for all of 7 minutes.

Now, in actual fact, there are four rooms for families and those with disabilities so it does serve for both purposes. So I wasn't actually doing anything wrong.
So why did I feel so bad? I mean, I have gone to use it so many times with Ryley and haven't been able to because of able bodied families using it. I have said nothing. Just patiently waited with a freezing cold child.

I think I felt bad because I really truly believe that there is just not enough facilities for people with disabilites, and I don't think I should have been using it. Even though I wasn't doing anything wrong. But still. 

The room itself was actually fairly poorly set out and in actual fact, I couldn't change Ryley in there anymore. It has an average sized change table, which Ryley is too big for, and then a narrow bench, which you couldn't put him on either because he is too big again. He has trouble standing for me to change him. So I am not sure how adults with disabilities manage.
I know the swim centre has just built two more new changerooms and I am yet to check them out. I might do that next week and see if they are any better.

In some ways, I get why they are dual purpose rooms. It is difficult to get kids changed and organised in the public open changerooms. So I do think that is fair enough that families and those with disabilities can both use the rooms. But I don't honestly think that the rooms are really accessible enough.

So yeah, I still feel bad about using the changeroom. But I was sick all day yesterday and still feeling average today and just wanted to get in and out without waiting for a shower or dressing in public.
I doubt I will do it again unless I have Ryley with me.

It's got me thinking though. I am going to start checking out all the "Disability" facilities every where I go. If they are dirty, accessible or not. It might be interesting.

Friday, February 25, 2011

A whole post of nothing.

Hark the herald angels siiing.

I feel the need for boring posts coming on. Seriously. Either that or I am taking this blog all the way to the shadows of privacy.
I am starting to feel a bit wierd about privacy on the 'net at the moment. I am on the verge of taking down my profile on FB actually. The only thing holding me back is the fact that I am in contact with so many families with WHS. But maybe I can get around that?
Anyway.
Today's fluffy post idea is completely copied from Sunny Side Up. Check out her blog people. It is way awesome.
So here are random thoughts and happenings from the past week:
  • Ryley has developed a 'snarl'. This means that if he doesn't like what you are saying he snarls at you. Been trying to catch it on camera. But he is too quick for me. Snarl.
  • The boys and I made an aeroplane out a box last night. We painted, cut and stickytaped for an hour and half. They are so proud of it. I took photos. But I don't plan on putting photos on here much anymore (you know, the whole privacy thing).
  • Braeden likes to argue with me. Constantly. Conversation generally goes like this:                         "Mum says No Braeden", to which he replies: "Braeden says Yes Mum". It goes back and forth like this until I walk away. Usually he follows me screaming.
  • I have my tattoos finally! Yay me. I love them. And want more now. Maybe a big "such is life" across my toned stomach. I can only imagine how that would really look on my not-toned-at-all flab ball of a stomach.
  • Some days I hate my dog Charley. Like when I leave her inside while I go to the shops and come home only to find she has eaten the pork ribs I had out thawing. She is now banished outside forever.
  • Finds it interesting that this week, I haven't given my campaign to lose weight a single thought, and have subsequently lost a fair chunk of weight. Hmmmm.
  • I actually put the bin out this week. Those who have spoken to me this week know what that is all about!!!
Ok. End of boring post about nothing. Braeden has just climbed up on my knee to ponder the meaning of lfie. You know he asked me today if I could get him a haircut because it was too long. So I did. Good parenting right there ya know.

Tuesday, February 22, 2011

Today I got this question

"It's funny how you seem to ignore some questions"

This was posted on my formspring page, last night I am assuming.

Not sure which questions I am ignoring. If you have a question you feel I am ignoring, ask me again, either by email, or by commenting on this post.

As I have said before. I am happy to enter into debates with people about the things I write. That is why I put it out there. I do not know all the answers. I am not always right. This blog is about MY experiences. If you don't like it, don't read it. If you genuinely want me to clarify or justify something then please let me know and I will do my best.

Monday, February 21, 2011

Echo Echo

Did anyone notice I haven't blogged for a while?
Hmmm?

Life, as usual, just got in the way a bit.

Sorry 'bout that.

Never fear though, I have been writing a million blog posts in my head, so they are bound to come out eventually.

Ryley has been sick again of course. So already I have had to pick him up from school early.
Sigh.
It's nothing serious. Just a cold/cough thingy. But you know he didn't have pneumonia all that long ago, and crikey it worries me that this thing will turn into the same thing. I mean, I had no real warning last time, so I am going to be watching that kid like a hawk from now on. Well, more like a hawk with binoculars on.

So what's been happening then hey?
Nothing much really. I am trying to keep off the computer a bit. Amazing how much time one can waste playing stupid facebook games.
I am about to go and light our wood heater.
And yes, it is summer over here. Not that you would think so.
I have been running like a run machine, and am finding that I am actually putting on weight.
So that's really helps keep me motivated (or not).

Um.
What else?
Braeden has decided it's pretty fun to run away from me. He particularly enjoys running next door to see if the chooks have laid any eggs. He also finds it not a problem to race to the cafe after swimming before I can even mutter the words "Braeden! Stop!".
Speaking of swimming, he has been put in a more advanced group this term for some stupid reason. So he is pretty much the least advanced of the group.
Despite my anxiety, he is doing really well, and enjoying the challenge. I don't mind him being the 'worst' of the group really. I refuse to push him, and he is amazing me every week with the new skills he is learning.
Gently does it.
No pressure.
Always wins out in the end don't you think?
And back to Braeden again. That kid seems to have inherited his Grumpy's maths skills I think. He has taken to counting everything (well, provided it only goes up to 10). He also doesn't mind a bit of adding here and there too. Some days he just amazes me with the things he draws or the things he says.
Normal development.
It will never cease to amaze me.

Ryley too, is not immune to my bragging.
I was absolutely overjoyed yesterday to see him nearly doing the sign for 'good'. You know, the fisted hand with just the thumb up. Firstly, he put his hand in a fist. Held it up and then ever so slightly isolated his thumb and moved it up a bit.
WOO HOO!!
I know how hard fine motor movements are for him. I constantly work on that. Every day we practice that sign. Every day I help him isolate his fingers.
It seems to be helping.
I know it seems like such a small thing, but never underestimate the enormity of it!

And finally.
David.
He rode 60kms yesterday in the Ballart Cycle Classic to raise money for cancer research. All up it was 72km by the time he rode to the Lake and then back home again. He didn't train at all. He just did it.
So proud of him.
A big thankyou to those who donated money to him!!

Signing off now to go chop wood.

Saturday, February 12, 2011

Trust

Such a big thing isn't it?
Trust.

Today as I ran around the Lake (yes, thinking AGAIN, can you believe it?), and as I passed by one of the restaurants I saw two adults with disabilities in wheelchairs with two carers. Whether the carers were family members or not I don't know. I don't think they were, but won't make assumptions.

I stopped dead in my tracks to be honest. I had to take deep breaths and compose myself.
I just felt so overwhelmingly choked up and overcome with...well worry, sadness, concern...and this feeling of are those adults OK?
Now.
Keep in mind that these carers were doing nothing wrong at all. They had obviously just come out of the restaurant and were waiting for transport.
I think I just caught a glimpse of how much trust is involved in leaving your child/adult with a carer.
I mean, what if those adults actually wanted to go see the ducks. What if they wanted to do something other than be at a restaurant?

Ryley is non-verbal.
Completely non-verbal.
He can't really say what he wants to do for the day.
This is what gets me the most.
For those people with a disability who can't express what they want...what if their carers are actually doing the complete opposite of what they are wanting?
Maybe they want vegemite instead of jam on their toast.
Imagine a world where you are trying desperately to say what you want, thinking that your sounds are doing just that, only to find that your carers, the people who love you, are doing the exact opposite.
Holy crap.
That sux.

Now, as a parent, who knows all that, how hard is it to leave your child or adult with someone else?
Pretty damn hard hey.
All too often I hear horrifying stories of people with disabilities being abused. It makes me physically sick.
With all that in mind, how do you trust others?
I have to trust Ryley's teachers at school. I have to trust that they won't harm him.
I have to trust family and friends.

But can I truly trust anyone other than David and I?

I shall ponder that on my next run.

Or if anyone has the answer...let me know please!

Friday, February 11, 2011

It was great to see so many people watching the You-Tube video and commenting on it and passing it on or reposting it to FB or their blogs.
But I have been thinking about it the past few days, and truly thinking about what people would do. I know that everyone who has a child with a disability or a sibling or family member with a disability would stand up and say something. But would other people really feel that strongly that they would? Did my comment at the bottom of the video prompt people to think "fuck off Anna, just because YOU would say something doesn't mean we would". I bet a few people probably did think that (provided you actually did read my blog post).
You know, I actually think that is ok though.
The world is made up of lots of people who are passionate about a cause. Which is great. How else can you bring about change if you aren't actively doing something about it?
I am passionate about disability, and wish that everyone had the same attitude as me.
Earth to Anna...
They don't.
Obviously.

I'm not responding to anything anyone has said by the way. It is just I have been spending time running every night and am starting to use that time to think (instead of trying to remember to put on foot in front of the other and to breath). A few blogs I have been reading lately seem to be writing about a division (of sorts) or heirachy of disability. This irritates me. But I will leave this for another blog post as, despite that fact that it annoys me, it is challenging as the same time, and I need to think more and consider how to present my thoughts.

Anyway, back to my thoughts on the whole What Would You Do thing. I think that in some ways I feel so disappointed in general with the way people treat others with a disability, that I almost expect that people would opt to say nothing. Perhaps it is because they fear confrontation. Perhaps it is because they just don't feel passionate enough. Perhaps they just see people with disabilities as nothing.

It is encouraging though when people (who don't neccessarily have anything to do with or experience with people with disabilities) do say that they would say something. That makes my heart soar.
You know, I tend to always speak up when I see injustices being done. People are so quick to judge others. And I am not just talking about people with disabilities here.

So, this You-Tube video continues to be thought-provoking for me.

Tuesday, February 8, 2011

What would YOU do?


I don't usually get emotional about the things I see on You-Tube. But this one struck a chord.

So, what would you do?
I would, of course, be the one who stood up to ANYONE who treated someone with a disability with disrespect. I wouldn't even think twice about it. I would hope that the people who read and follow this blog would do the same.

Saturday, February 5, 2011

Dear Ryley

Well, the day is almost over, and I am writing this at 5:03pm which is the exact time that you entered the world 9 years ago.
It feels like only yesterday that I held you in my arms and just gazed at you in awe.
I will never stop gazing at you in awe.
I hope that you have had a wonderful day today with some our closest friends and family. You spent most of the time on the trampoline, which is pretty much your favourite spot in the backyard!
I know that life can be a struggle for you, and that things are really hard at times. But please know that you are very very much loved, and that your Dad, brother and me are always here to love and support you.
You are growing into a very big kid and your confidence and maturity is really showing now
Ryley, I hope that this year you continue to be happy. Continue to gain confidence, and find ways of doing things your own way, like you always have done.
Your Dad and I are so very proud of you. You are our heart and soul.
Lots and lots of Love always.
From Mum and Dad.

I will get some pictures up later on or tomorrow. Right now I am exhausted! We have been up since 5:30am because Ryley was SO excited about his birthday! He has been spoilt rotten and we have enjoyed a great day today! A big thankyou to those that could make it, and those that travelled!

Thursday, February 3, 2011

Ever got to that point as a parent of a child with a disability where you just feel like you cannot go on another minute without a break of some sort?
Your energy is spent.
You can barely put one foot in front of the other, let alone hold a conversation.
Every time you think of a nappy change, a PEG feed, medication giving, dressing/undressing, lifting, you just feel sick in your stomach.
That is how I have felt today.
Like I just cannot physically move any more.
Like I just can't watch another seizure.
Like I just can't try for the millionth time to understand what Ryley wants.
Like I just can't help him understand why he isn't staying at school today.
Like I just can't look into those beautiful eyes again without feeling like the worst mother in the world.

I have to keep going though.
And I will find the energy to play with the playdough, or draw, or go on the trampoline.
And I will tell Ryley that tomorrow, he can go to school on the bus.
And I will comfort him again after his twenty hundredth seizure.
And I will look into those beautiful eyes and plead with him to forgive me for not being much fun today, and that tomorrow is a new day filled with promise and hope.
And I will tell him that I love him.

Tuesday, February 1, 2011

Hmmmm?

Sometimes words that are meant to be comforting, actually end up being anything but.
Today Ryley had his gastroenterologist appointment, and really, it pretty much one of those visits where we are in and out. He is only being monitored at the moment ($125 later).
The doctor is lovely and we have been seeing him since Ryley was a baby, but today he remarked ever-so-casually "I can't believe how well he is...I mean...I didn't think he would be still with us".
Yes, ok, it is great to hear he thinks he is doing well, but really? He didn't think Ryley would still be alive? Not exactly the words I really want to hear thanks.

I agree that Ryley is healthier both nutritionally, neurologically and developmentally by being on the Ketogenic Diet and being PEG fed, but would he be dead right now if I hadn't got the PEG? Perhaps one of the specialists could have alerted us to this a little earlier and encouraged the PEG insertion when he was younger rather than tell me I am doing fine forcing him to eat 10 meals a day. It sure would have made my life easier, not to mention Ryley's.
Anyway.

It proves again to me that those in the medical profession just see my child as a medical abnormality. They see him as Wolf-Hirschhorn Syndrome, not Ryley.

David and I work hard to take care of Ryley. We don't get breaks (ok, we get to go to work, what am I complaining about?), we live with incredible stress, but we will never give up. If I thought for a second that Ryley's health was being compromised, I would do everything I could to find a solution. On the topic of the PEG, I asked my paed every visit (it gets a mention in ever letter of correspondence) whether I thought it would be a good idea to get one. Every time, he said it would only make him heavier and harder to manage.
He was right about that. Ryley is heavier. He is harder to manage. But he can walk now. He can do so much more independently, he is having less seizures. He can keep up with the kids his age almost.

My message.
Trust your instincts.

Ryley is still with us because we will always make decisions based on what we think will achieve the best outcome for Ryley.

Does anyone else get what I am saying??

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