Thursday, May 26, 2011

I will return after these short commercials...





And also when Ryley is well again..But for now..just consider making a hammertime suit, or investing in a music vest, while listening to tv commercial music and typing on the new electric typewriter.


Friday, May 20, 2011

I am not quite sure how to title this post.
Today, I kept Ryley home from school.
He has seemed really tired and lethargic all week, and he seems to have a really heavy cold.
So.
I just thought he needed a mental health day.
He was pretty pleased to stay home too.
And he has cheered up enormously.

Braeden has also been out of sorts this week and I had to pick him up from daycare early yesterday. He made a miraculous recovery too once he was home.
(Maybe we all need a holiday..Barossa is where I am thinking!)

Anyway.
None of that information is really relevant to what I want to post about.
Ryley and I were sitting out the front in the sunshine waiting for David to come home this arvo when the kids next door started sitting outside.
Nothing unusual there.
They say 'hey' to Ryles and continued on hanging out.
Ryley watched them for a bit then came back and sat down with me.
What I saw in his eyes nearly broke my heart.
So badly, did he want to jump that fence and hang out too.
But instead.
He had to hang out with his Mum.

It got me thinking.
Ryley is a really social kid. He loves people.
Even today when my friend came over with her kids and they were all playing together, Ryley wasn't able to actually join in. He was part of it, no one left him out, but he was really just sitting there as an observer.
He did eventually just come and sit with me on the swing. Partly maybe because he loves the swing. Partly also because he just can't play those imaginative play games.

Ryley can't talk, so he can't initiate a conversation.
Most kids kind of just accept him and neither spend time involving him, nor do they purposely ignore him.
But I do honestly think he feels left out sometimes.
As kids get older they just don't seem to bother with him.
But the thing is, he is 9 years old. He has been around a long time. Hanging out with his Mum is not exactly the best thing in the world is it?

It must be so hard not being able to talk.
Wanting to speak, to play, to join in.
He is happy sometimes to just sit and watch the other kids running around.
But this afternoon, I just felt his sadness.
Braeden will only include him for a bit longer. He is already starting to tell Ryley to go away.
So what next?
How on earth do I solve this one?? Can I solve it? Or am I just overthinking as usual??


 


Thursday, May 19, 2011

Lanceamus Jones



Today we got our copy of this story. Lanceamus Jones is a little boy who happens to have Wolf-Hirschhorn Syndrome. This a lovely story with the simple message that everyone is special, no matter what their differences are.
Ryley absolutely loves it!! So does Braeden.
You can order it from here: Lanceamus Jones









Tuesday, May 17, 2011

Blast from the past

If you double click on it, it should open in another page and you can see it better!

 
I know this will be hard to see, but this is my Ryley, aged around 2 and 1/2 years old when he had just started daycare.
How tiny is he???!!!
Despite the fact he has really only been a 'big' kid for a couple of years, I forget how he was always one of the really tiny WHS kids.
So the daycare must have found it somewhere hidden away and gave it to me this morning when I dropped Braeden off.
He didn't mind being in his standing frame when he was at daycare, but when it came to him being in one at home, he hated it!
He still has a Kelly Chair similar to the one in the bottom right picture, only it is a bigger one. He uses it at school.

I know I am bias.
But geez he is a little cutie!!

Saturday, May 14, 2011

Can haz something finished.

So we all know Blogger has some...er...technical issues this week.
I will blame them for my lack of posts. Ok?
Actually, I wouldn't have had time really anyway. I am currently busy organising our major fundraising event for the WHS conference. So, I will plug it at some stage here on the blog. But if you follow BlogaboutaBloke on FB you would have already seen me plug it.

But this post is about the most amazing thing in the world.
Well, maybe not the most exciting thing (it's not about someone coming in and cleaning my house for me), but it is close enough.
We have actually finished some of our renovations.

Now don't all fall over.
I know.
It is fairly unbelievable.
But, it's true.

A little while ago we decided to start yet another project to add to the list of about 100 projects we have going at the moment.
We decided to tear our front study apart and make it into Ryley's room.
That way, the kids could start spending more time in their own spaces rather than annoying us having to be around us.

Ryley picked the colours he wanted his room to be and we think he picked rather well.
It is all completely insulated and newly plastered, painted and carpeted. We did everything ourselves except for the carpet, we had a 'carpet man' come to lay that (much to Braeden's delight, he got to have someone else to ask Why).

So here are some photos.
We think we will one day seriously go into buying and renovating houses.
We just need a few hundred thousand. So if anyone has anything spare like that in their pockets, be sure to send it our way ok?!!!




Ryley making sure he can still see what is going on in the street.

Yep. Just kicking back.


I put this one in for those that know about orbs. Coloured ones are angels right? Doesn't suprise me.


Sunday, May 8, 2011

To my boys

Thanks for the slippers Braeden.
Thanks for the amazing things you made at school Ryley.
Thanks for the plants David.
And thanks for the parma that smells delish, and I am hoping tastes as good.

Thanks for behaving yourself today.
Thanks for giving me icy-pole kisses and arms-around cuddles.
Thanks for the snuggles and the tickle-pickles.

Thanks for making me watch Play School and Dora the Explorer 753 times a day.
Thanks for asking me 'Why' after everything I say.
Thanks for the handleading to the cheese yet again.

Most of all:
Thanks for just being Ryley and Braeden.
No matter what the challenges may be, you both make me who I am today.
I am so proud of you both.

So I thankyou both (and David too),
For making every day Mother's Day.









Tuesday, May 3, 2011

Horseriding and more moments of excellent mothering

Truly.
I am the most excellent mother.
Hands up who thinks so.
That silence sure is deafening. It will remain deafening after I tell you all my latest moments of excellent mothering.

It began yesterday when I battled yet again with Ryley to dress him.
Braeden has also decided it would be fun to have a dressing battle with me too. So joy of joys, I battled them both yesterday.
Bus arrived.
We get up on the bus and one of the kids from Ryley's class says "Hey! How come Ryley isn't in his Pajamas?"
Ooooooohhhhhhhh Faaaarrrrkk!
Told the attendant to put Ryley in his seat as I jumped off the bus and bolted inside (I don't think the attendant heard me actually, and meanwhile Braeden was just partying somewhere on the bus).
Ran around like a blind woman searching for PJ's.
Oh. Yeah. That's right.
Don't have any clean ones due to vomit and...er...well...let's just say the pants were not clean.
Grabbed the top he had worn the night before and raced back out to the bus.
Shoved the attendant out of the way, well ok, she moved when she saw me coming.
Changed Ryley's top and clicked him in.
No problem.
Off the bus went on it's merry way.
Only then did I look for Braeden.
"I'm here Mum"
Oh good. Well that's that then.

I have actually forgotten PJ day before. It was only one other time. I can't remember how old Ryley was, but he was at daycare. So I reckon he must have been about 3 years old. I will never forget walking past the window to daycare and looking in, only to see oh my god every kid was in their pajamas.
I actually raced Ryley back to the car and all the way home. Changed him and took him back (probably much to the amusement of the daycare staff).
Later on that day, I get a phone call from the daycare to tell me not to panic, an ambulance was on the way, but Ryley was having a grand mal seizure (generalised tonic-clonic).
That was probably right up there with the worst days of my life.
I am tipping he was so freaked out by the fact that I was so stressed about him wearing his PJ's (confused more like it) that his brain went into overload.
Either that, or he was mightly pissed off with me.

So.
Second moment of excellent mothering.
Same day.
Yesterday.

Ryley came home from school. Seemingly unscathed from only wearing half his PJ's.
Now.
I got my new treadmill delivered yesterday (because it is winter almost, and getting out after tea for a run is impossible).
Cue: two very excited kids.
Me, being the awesome mother that I am, thought I would let them have a go on it.
Set it to the slowest pace and one at a time they had a turn.
They both loved it!
So I thought I would get on and show them a bit of running.
Had just started it a medium speed and turned around to see Ryley's arm caught at the back.
Safety stop immediately and nearly trip over in the process.
Pull Ryley's arm out and there is this massive massive burn on it.
He is holding his arm and just looking at me like what the hell did you do to me Mum.
I panic him as usual and he starts to cry.
Try to run it under water.
Nope, it hurts too much.
Try to soak it in the sink full of water.
No way.
Facewasher.
No.
Crap Crap Crap.

Take him to the hospital.
Braeden starts removing pieces of furniture from the playroom out into the emergency department full of people (I didn't realise until I saw people laughing in his direction).
Ryley makes out like he is fine.
It turns out to be a superficial wound only, but they want to dress it and bandage it all up.

It doesn't seem to be all that painful today, but it was definitely really hurting him.
Poor kid.
Sucks to have me as a mother.
Although his love of movement and all things that vibrate may have contributed to his accident. But he won't admit that.

So after all that shining example of good parenting.
Let me finish off the posts with some pics of the kids riding my sisters little pony Sunny.
Ryley has always hated being on a horse, but for some reason he has decided it isn't so bad after all.
Braeden is quite the natural and listens to instructions and knows how to kick the horse to make it go and pull the reins to stop. He made that poor pony do it a million times.
Hopefully we can make it a regular thing because it is so good for Ryley and his balance and body strength. Not to mention his confidence.
He was pretty good at listening to instructions too.









Sunday, May 1, 2011

Exclusion and Government Funding



Something that has frustrated me lately, not only as a professional working in the disability sector, but also as a parent of a child with a complex disability, is the government's lack of support, or rather, the inequality of support given.
Last year the federal government brought in Helping Children With Autism packages for families who have a child with an Autism Spectrum Disorder under the age of 7. Families are now able to access an extra $12000 to use for extra therapies or equipment. The agency I work for are one of the providers of these packages and there has been many many issues associated with this extra funding.
Firstly, as a professional, I saw an increase in incorrectly diagnosed children. There were a number of families who actively sought a disagnosis of ASD just to get this money, despite the fact they were getting adequate early childhood intervention services. Very sad that families have to resort to that to get adequate help don't you think?
There is now the issue whereby families are effectively 'double-dipping', which means they are accessing both fee for service (through HCWA) as well as free through ECIS. This is currently contributing to longer wait lists for others, not to mention the fact that it is very confusing for families.

Just recently, Fachsia announced a new program called Better Start for Children with a Disability. This program will be similar to the HCWA packages, but will be availiable for children who: have a vision or hearing impairment, cerebral palsy, down syndrome and fragile x.
My first reaction?

WHAT THE FUCK?

Again, we are seeing a clear exclusion of a HUGE part of the population of children with disabilities. Don't get me wrong, I am very glad that there is extra money available for those who have a child with ASD, CP, DS, Fragile X or Vision/Hearing issues. Families deserve it. Children deserve it. It is great to see at least some recognition from the government that more funding is needed.
But seriously?
What about the children with Epilepsy? Rare syndromes? Complex medical issues? Severe undiagnosed disabilities? Children with an acquired disability due to an accident??
My list would go on.

For me, the issue is about the exclusion. The people that are being excluded are the people that need that money too!
I cannot for the life of me understand how this new initiative is going to work. I have encouraged the families that I work with to sign up for it, do whatever they need to do to say 'hey I am eligible'.
But at the end of the day, the issue will be about how to spend the money when they are getting free service anyway.

More funding needs to be put into funding equipment. More funding needs to be put into respite for carers. More funding needs to be put into supporting families right through the lifespan.

For families who have a child with a disability, the constant fighting for things that are basic necessaties can leave you utterly broken down. Why can't we have a fair system that acknowledges the needs of every individual and family? We can only hope that the NDIS addresses this, however, my hopes are not high given the inequality and exclusion that already exists.

This will be my first year participating in Blogging Against Disabilism Day. I plan on participating every year and I encourage regular readers of my blog who have blogs of their own to do the same thing!

Go here Diary of a Goldfish to check out the other posts.

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