Positive vs Negative

For every positive experience, there is always a negative one.
Or that is what I have found.

Last night, we had a wonderful time out for tea with our friends. The hardest thing about going out is having to 'shadow' Ryley. The place we went for tea was great. It was a small country pub, and there was really nothing to worry about. But the problem is, I still feel like I always have to keep an eye on Ryley. He is more than able to wander around, follow the kids, sit at the table. But he rarely stays still. He is not able to communicate his needs, and he can't really join in with the other kids as they make up their own games to play. So, he is part of it all. But he isn't.
David had the 'night off' so to speak, given that it was his celebration. Usually we take it in turns, but he had a free pass to enjoy himself as much as he could. So, let's just say, I was very tired by the end of the night and felt like I had barely spoken to anyone! I did enjoy myself though. Even 5 minutes of conversation is..well you know..5 mins of conversation!!!!

Something really nice happened though. I happened to take my eyes off Ryley for 5 seconds (probably to engage in conversation!!) and then I noticed he had wandered over to a table full of footy players. I immediately jumped to my feet and bolted over, only to find them all giving him 'Hi Fives' and asking him how his day has been. With a bit of a lump in my throat, I smiled and felt really proud of Ryley for being able to just go and 'start a conversation' without caring what the response was. I often wonder who is more disabled by Ryley's disability...me or him?
So, Nhill Footy Club...you should feel really proud of yourselves, what a great bunch of blokes!

Today Ryley was in full whingeing mode so I finally had enough and decided to take Ryley shopping. On his own, just me and him. Braeden wanted to stay home and play with his playdough and colour in, so that turned out really well.
Unfortunately, the visit to Target didn't go that well. I decided to let Ryley walk. That was my first mistake.
At first he was excited and nearly falling over he was trying to walk so fast. Then when he realised that I wanted him to follow me...well that's when the trouble started! To cut a long story short, I ended up carrying him, and as much as he loved it, I nearly broke my back.
As we waited in line to pay, Ryley made his usual grunting noise (which means hurry the F up). Two ladies already being served made a point of turning around and staring at us.
Ryley then shrieked when someone walked past.
Same two ladies turned around and just stared and shook their heads.
Ok.
Not such a good day for me today.
So I mumbled (not as loud as I could have): "What, you haven't ever met a child with a disability?". It didn't serve it's purpose really because only the lady in front of me heard and she shifted very uncomfortably as far away from me as she could.
Again, with the lump in my throat, I just held my head up and got Ryley to help me put our purchases on the counter.
I got back to the car and cried. Sometimes those negative experiences really get to me.
So I took Ryley to the park. I knew that if he was smiling and laughing, then I would be too.
It worked.

Things I have learnt this week

• It is really hard not seeing my boys for a whole day and only being able to kiss them goodnight at 10:00 at night.
• It is the best feeling in the world when you get home late and both your kids come racing over to give you a cuddle and a kiss and start chatting away.
• Even though we only had $15 to our name last week, we managed to make it through thanks to the kindness of our next door neighbours who knew we couldn't afford food (yes, it was THAT bad) and made sure we had enough to eat (his partner's son works at Bakers Delight). I can't really explain in words how it makes me feel knowing we have people looking out for us.
• Through the training I have had, I have learnt a few things about building on Ryley's skills and therefore helping to prevent long term behavioural problems. I have also learnt that I really need to stop asking Braeden to do things, because when I am asking him ever-so-politely, it is giving him the opportunity to say NO. I am very much looking forward to trialling some of the strategies at home, which will help me then deliver the course to parents.
• I have also learnt that I need to find time every week to do some exercise or something for myself. Even if it is just to walk around the block. My job is very intense and really draining, and I need to take care of myself.
• And finally, I have learnt that families who have a child with a disability are more stressed than other families. I already knew this really, but it was reiterated very strongly over the 2 days and there is lots and lots of empirical evidence to back that up.

I am so looking forward to just hanging out with my boys this weekend. Not to mention seeing all of our closest friends and enjoying a night out with them. I will even remember to take photos!!!

Updates

Stupid me forgot to take the camera card out to Amphi this weekend.
Imagine this, I have lined up the 'perfect' shot of Ryley feeding the sheep with Braeden in the background.
I press the button.
The camera beeps a million times and tells me it can't record the photo.
Meanwhile, Ryley has chucked the hay and wandered off. Braeden is long gone. And I am cursing myself for forgetting the memory card.

Oh well. There will be other opportunities.
Ryley and Braeden had an absolute ball on Saturday playing with their cousins. For the first time ever, I merely kept an 'eye' on them. They both just wandered around watching David at times (he was busy tiling part of his parents kitchen so he could put the stove in), and spending a lot of time mucking around.
Sunday was a another story, there were no cousins for most of the day and Ryley was SO naughty!

It is absolutely flippin' freezing here at the moment. I feel like we are going to get snow at any moment. Of course we won't. But still...!

Tomorrow my darling husband turns 30. We aren't doing too much. We had a cake out at his parents house on Saturday and we are going out for tea with our closest friends on Saturday night (which I am looking forward to!).

I have two days of training in Melbourne this week. I am doing the training for "Signposts for better behaviour". The program aims to teach parents how to mange the behaviour of their children, but specifically their child who has an intellectual disability. Our EI program already runs this for parents, but there only seems to be a couple of people trained to run it. So me and two of my colleagues are heading down to be trained to run it. I am looking forward to learning and also seeing just how family friendly and realistic is it.

And, to update you on our Dads program (for those that can vaguely remember me mentioning this!). We are now in our 4th week and our group of Dads is growing in numbers each week. Word must be starting to filter out. Yay! There has been such a gap in services for Dads, but I think we will have set the precedent and be able to advocate for the continuation of this program and group we are facilitating! Exciting!

Just 'cos

I haven't done a Just 'Cos for ages, and I haven't been taking many photos lately. But here are some:

Cleaning up

Oh look...a penguin...

Guitar Hero

Waiting for Dad to get home.

Ryley and his Poppa, Stanley and Rex, and Poppa's dog Harvey.

Sick again

Ryley's health is really puzzling us at the moment.
This is part of the reason why I jumped at the chance to see his neuro team earlier than I am meant to be.
I am assuming that his increase in seizures and constant vomiting has something to do with the Ketogenic Diet, but then again, I am not entirely convinced that is all it is.
I think I know in my heart of hearts that we are probably going to have to come off the KD and see what happens. He has been on it now for nearly two years and I think either we make some adjustments to the diet itself (like increase the ratio) or we start thinking about alternatives.

He is actually in bed asleep at the moment. He vomited at school so I went and got him. He is ok, but I just knew he needed sleep. I just wish I knew why he was vomiting all the time. Maybe his reflux meds need to be increased again. I don't think it is that though.

Sometimes it is hard not to look at Ryley and just see his health issues. Mainly because I can't figure them out. And that is driving me crazy. I want to make things better for him. I should be able to. But I can't.
Sigh.

So at least we see his team of specialists in a few weeks. We are having a holiday at the hospital. We get to stay overnight and all. Woot.

Health Check

I had a workplace health check today.
Bit of a waste of time to be honest. Although no surprise for the one thing that wasn't alright with me.
Can you guess?

Yep you guessed it...blood pressure waaay too high.
Can't imagine why it would be abnormally high. I mean. My life is so stress free...
Hmmm. Anyway. Apparently I don't need to do anything. Although some of the girls at work did suggest I find a GOOD social worker. Har har di har.

Tonight when I was bathing the kids I noticed just how CHUBBY Ryley has gotten. I knew he was getting bigger, but I don't think I realised how much. He has lovely chunky thighs and he is so well covered. Never thought I would see the day.
On the subject of Ryley and his biggerness, he is so very heavy now. I find it a real struggle some days to lift him. He still gets tired easily, so we might be out walking somewhere and all of a sudden he has had enough and I have to carry him. Crikey that's hard. I know there are lots of families out there who have the same problem. Perhaps the government could have considered this in their budget-that-provided-NOTHING-for those with disabilities and their carers. So many people have to fit their houses out with hoists just so that their child can do what most people take for granted, like have a bath or go to bed.

Braeden is still a little penguin.
Did I mention that he thinks he is the star of Happy Feet? He loves his 'Pee Pe' (which is his penguin figurine, not to be mistaken with toileting). He even went so far as to find socks and put them on his hands so that he had flippers! Talk about an imagination. So nice to see it starting to emerge. He is cruising along being his normal happy self most of the time.

You know how a little while ago I said we were going to try and be frugal?
Well.
We still are. Only that is because we seem to just be spending every cent we earn on bills or things that bust. Like the computer.
Or our car for example (which has to be fixed this week).
FARK.
Lucky I am now the proud owner of a slow cooker. Now to just get some recipes!!

I have rambled long enough now.
Best go finish the jobs so I can go to bed.

OK.

So.
I have my computer back.
$165 later.
It was all very technical. Apparently it took the computer geek man two and 1/2 hours to figure out that the connection between the computer and the power lead was loose.
Because I am a social worker, I couldn't help myself and as he finished trying to feed me a heap of technical jargon, I said "So what I am hearing you say, is that I just need to jiggle the cords to make sure they are in properly".
He nearly choked.

Comedy reasons. That is why. Comedy reasons.

So the blog remains open.

I have lots to write about. But no idea where to start. I will make clear though, that I am VERY disappointed with the most recent federal budget which was released this week. Old K-Rudd is not impressing me right now.

Anyway.
I thought I would remind everyone that I still have this: Ask me something. If you have any questions, please do ask.

Finally.
Thank you to those who emailed me, messaged me, or just basically checked to see if I was ok recently. You know who you are.
I am so lucky to have such awesome friends.

I will be back

I have currently made the blog private while I have no computer to monitor things. A couple of issues have arised recently in terms of privacy which I have now addressed.
The blog will be reopened until tomorrow and will be closed over the weekend as I will have no access to it.

A couple of things:

• Any comments that are made by anonymous users who don't sign their name will not appear on the site. I understand that not everyone has signed up to google so that they can follow me publicly which is absolutely fine. But just a reminder that if you do comment, please add your name at the end. I will then respond to your post if I need to (and will publish it).
• Anything that is written on here is MY OPINION. I do not expect people to agree with me. I will not stop writing because people disagree.
• I like to be challenged and am more than happy to enter into a debate, but stand by what I write.
• People who wish to attack me personally will be blocked or I will make the blog private permanently.

At the end of the day, this is a PERSONAL blog. The information I share is about what happens in my life and what it is like living with a child with a disability (and one very neurotypical toddler). If you don't like reading the blog. Don't read it. Simple. I don't write for any particular audience. I write for myself.
I am constantly surprised that people like what I write and choose to follow the blog (so thanks!!).

I am Mum

As Mother's Day approaches, I have been reflecting back on my role as a mother and what it means. I am not just a Mum. I am a million things. But the most important thing I will ever do in my life will be a mother.
And I really don't want to stuff it up.
Having a child with a disability means you are no longer just a Mum. It means you are your child's voice. You are sometimes their arms and legs. You have to pay attention to every.single.detail or else you will end up with a sick or injured child. Or worse. Your child could end up very very sad.

It is hard.
Being a Mum of a child who can't talk.
Who can't tell you about their excursion to the Aquarium.
Who can't tell you if he got a window seat on the bus.
Who can't tell you if he loved seeing the stingrays.
I don't stop asking him though. About his day, I mean.
I desperately look for changes in his facial expressions, to see if he is telling me or not.
Does that smile mean that he had a good time?
Do those sad eyes mean he wishes he could tell me all about it too?

And what about the constant health issues? 
I can't tell you what is wrong with my child because he can't tell me how he feels.
Again, I am guessing by the constant seizures, the pale face, the gentle whinge, that he is feeling awful. But how do I fix that? How can I find out the reason?
People think they know.
In fact, people bombard you with the solutions.
OH YEAH.
Of course. It is just as simple as that. Now why didn't I think of that?
If only it was that easy.

I am, and will always be a Mum First.
I will always want to wrap my arms around my children's bodies and enjoy how they seem to just fit so perfectly.
I will always tell them how proud I am of them. How much I love them. That they are beautiful, kind and clever.
I will always want to make them happy, give up anything to ensure they get what they need.
I will always just enjoy hanging out with them. Talking with them. Being close to them.
Making each day better than the last.

You know what I love about Mothers Day?
I don't want expensive presents. I just want to be able to spend time with my children and my husband. Enjoying each others company.
And finding ways to smile.

Uh-oh

Last night Ryley got out of bed and wandered out to the kitchen, as he often does. David and Braeden were doing the dishes and I was trying to master Guitar Hero.
As Ryley got closer to David, he had a seizure and fell, and before anyone could catch him, he hit his head on one of the door handles of the draws.
Talk about panic (well, I did, David stayed calm).
We applied pressure and hotfooted it up to the emergency department, where we used our powers of persuasion (aka mentioned 'seizure') and went straight in.
We got a lovely junior doctor who could barely speak english, so again, we used this to our advantage and bamboozled him, so that he simply glued Ryley up and let us go. Neither the nurse or doctor had heard of WHS or the ketogenic diet, and they even struggled with what myoclonic seizures were (this wouldn't happen in WHS town.).

Throughout the whole thing, Ryley was really good (as usual) and Braeden was just gorgeous. He was so worried about Ryley and had to lay with him on the bed and wanted to be as close to him as possible the whole time. He desperately wanted to get his hands on the trolley with all the medical supplies on it, but resisted temptation. The funniest part of all was when the junior doctor asked if Braeden was Ryley's big brother.
Say what??

So apart from being a bit sore and sorry for himself, Ryley is ok. Another scar to add to his collection.
Here are some pics. They were taken on my mobile. So a bit small.

The battle wound

Ryley and Braeden in hospital kicking back on the bed.

All fixed now.