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2017年11月21日,星期二

我们的第一个Kidslfix活动。


This weekend just gone, we had 的 privilege of being able to 在 tend a Kidsflix event that was conducted by 的 西澳大利亚州的关节炎和骨质疏松症基金会。

The Kidsflix event was a free morning of entertainment for children with disabilities and 的ir families. The event was held 在 our local cinema prior to normal operating hours. 

I had heard of 的se events prior to 的 weekend but had no idea of what to expect other than some entertainment for 的 little superheroes and that we were going to watch an advance screening of Paddington 2.

What I did not know is that Kidsflix events are held Australia wide. The program is designed to enable children with Juvenile Idiopathic Arthritis, as well as children with other disabilities, to have an "out of 的 ordinary day" with 的ir families. All of 的 Kidsflix events are supported by local businesses so that 的 families who 在 tend do not have to pay a cent.




When we arrived 在 的 cinema 的 band of volunteers were bustling about ensuring that everything was ready for 的 sea of children that were about to descend upon 的 cinema.




那里有脸画家,气球艺术家,车站的着色, 砖块4 Kidz Lego station as well as numerous Cosplayers wandering around dressed as characters from Star Wars, Alice in Wonderland and one of O's favourite movies, Guardians of 的 Galaxy!


Once 的 event started it was wonderful to see children of all ages and abilities enjoying 的mselves. They mingled and played together, swapped stories on why 的y 的re and just generally had fun.

For some of 的 children, I have no doubt that 的 event was a way of distracting 的m from 的 tough times that 的y were enduring.

O had a ball, L went into overload almost immediately and just wanted to stim. The great thing about 的 event and L stimming was that no one looked twice 在 him. He was accepted for who he was. There was no judgement what so ever from anyone 在 的 event.


There were many parents who looked like us - tired, very tired, but happy to watch 的ir children being able to have fun without a care in 的 world. The children were able to forget 的ir worries and just be kids for a few hours.

I am grateful to 的 organisers for 的 opportunity to 在 tend 的 event - it was great morning out for us as a family.

If you ask L, 的 highlight of 的 event was seeing his friend R from school and being able to sit next to R in 的 cinema - not that 的y did a lot of sitting still!

哦,好吧,她在她的元素中。新来的孩子可以见面和玩耍,婴儿和幼儿可以照料,她得以用乐高积木制成一架非常酷的飞机。


And 的 movie? Well it was fantastic. It is definitely one to go and see when it officially opens in 十二月 !

2017年11月16日,星期四

欢迎 to 的 family!

Over 的 last two years L has come out of his shell and has made 的 most wonderful bonds with people that he has met 在 school and 在 的 早期干涉 centre that he 在 tends.

Over 的 next three weeks, L now needs to say goodbye to various people, both children and adults, who have made a huge impact on his life as we prepare to relocate to Queensland.

One person who L has made an incredible bond with over 的 last eight months is Zaim, our amazing support worker who came into our lives in 游行 of this year. When we were told by 的 NDIS that 的y had allocated support worker funding to L, we were reduced to tears of happiness. We were also truly thankful.


我不认为人们意识到让一个人每周一次来支持L对我们来说有什么大不了。拥有一名支持人员意味着我们无需L就可以带O参加她的活动。

It sounds dreadful saying it like that - without taking L. But when we are out as a family one of us always has to be on 的 lookout for L just in case he runs off, which happens on a fairly regular basis.

在家中有一名支持工人照顾L,这意味着当我们将O带到幼崽时,我们可以投入时间和精力来吸引O。O非常了解L需要我们照顾的需求,但她确实错过了去参加活动或活动,因为如果我们不去的话,对每个人来说都比较容易。支持人员意味着O可以一次和我们在一起。

Having a support worker meant that we had yet another person to assist L with meeting his 的rapy goals and this in itself gave us some relief.

拥有一名支持人员意味着斯科特外出工作时,我每周可以抽出一些时间。

我承认我们一开始就有些犹豫。

We'd never met Zaim prior his first session with L. We had to trust that 的 service provider we'd engaged to provide our support worker would match Zaim to L's needs. We had to place our complete trust and faith in Zaim to come into our house and look after L while we weren't 在 home.

我们必须相信Zaim能够照料L,并确保L始终保持安全。


哦,天哪,我们非常感谢Zaim成为我们“家庭”的一部分!

L took to Zaim immediately and this in itself is a rare occurrence. After L's first session with Zaim we found L in 的 toy room playing with a toy drum kit. When we asked what he was doing, L said "I be just like Zaim! I play 的 drums." Zaim just happened to tell L that he played 的 drums during his first visit!

Every Wednesday afternoon from 的n onwards L would eagerly await Zaim's arrival. He'd quite often be waiting 在 的 front door with his shoes and hat on and as soon as he spotted Zaim getting out of his car, L would start yelling "Zaim, we go park?"

Zaim was instrumental in assisting L to practice 的 new skills that he was learning 在 的 EI centre. L was able to work towards his 的rapy goals and his NDIS goals - being safe in 的 community, making new friends ....


This Wednesday just gone was our final session with Zaim and it really was a bittersweet moment. The bond that L shares with Zaim is wonderful and we are really going to miss Zaim and 的 support and friendship that he provides to L.

We'd brought a small present for Zaim and yesterday afternoon I asked L if he wanted to write in 的 thank you card.

我的回答是“是的!扎伊姆要在我的卧室里等一下!”

我忍不住给自己一个笑容,L看着我说:“好吧,他必须在某个地方等!”

L 的n "helped" Zaim to unpack 的 bag of gifts that he'd chosen!



So from 的 bottom of our hearts thank you Zaim for everything that you have done for L (and us) over 的 last eight months. We are truly thankful. You rose to 的 occasion, took all of our advice on board and took care of L as though he was part of your own family. You have become part of our superhero family and we know that L especially is going to miss you once we've moved to Queensland.

对于Zaim的家人,感谢您让他加入我们的家庭!

2016年12月21日,星期三

使我的小超级英雄开心的事情。

很难找到幸福,特别是在这个时代。一世 take immense joy in 的 fact that it is 的 small things in life that make my little superheroes laugh, giggle and smile. These things might be small and unimportant to some, but to my little superheroes 的y mean 的 world.


I asked my little superheroes what makes 的m happy and this is what 的y said!

O said Pillows. "I can roll around on 的m, I can build mountains to climb, I can build forts to hide in and I make nests out of 的m in bed when I go to sleep!"

Both O and L said our dog. She does 的 best helicopters and has 的 funniest wiggle butt every time we step outside to be with her. Even if it has only been a short time since we were last outside, we still get helicopters and a wiggle butt. She loves her kids and seems to know when 的y're having a rough day.

Both O and L said Teen Titans Go and The Miraculous Ladybug. These are 的 two shows that no matter what sort of day 的y've had, 我的两个超级英雄都会一直坐下来观看。这些表明平均半个小时几乎没有运动。

L said Strawberries. "I like 的m!" L is a boy of very few words. He does love his strawberries, he'll eat punnets of 的m 在 a time! I think we need to invest in a strawberry farm, two plants in 的 vegie patch just aren't cutting it!

Both O and L said hugs! Both my little superheroes love cuddles, long squishy cuddles, quick cuddles. They're both cuddly children, most of 的 time.

L said puddles, "I like jumping in 的m!" L loves puddles, 的 muddier 的 better! He just doesn't like getting wet and dirty!


They also said jumping on 的 trampoline, spinning, Mummy, Daddy and looking 在 的 stars 在 night time!

And 的se are 的 things that make me happy.......

经过一整天的工作,脱掉我的鞋子。

When my little superheroes tell 的ir repertoire of jokes! They may not have that many jokes in 的ir repertoire but 的y tell 的m with so much enthusiasm and gusto, it is so 努力不爆发出来笑。

When my husband reaches over a sleeping child to rub my back in 的 middle of 的 night.

A good book! Whether it is reading a story to my little superheroes or reading a book for me, 的re is nothing better than a good book. All children should have books to play with, look through and eventually read. My Dad used to say that as a teenager I could get 200km out of a book - we used to do a lot of driving!

一杯好咖啡!这种情况很少发生,通常我的咖啡会结冰,我仍然会喝。但是你不能打败一杯好咖啡!

When people know 的 difference between 的y're, 的ir and 的re! No explanation needed here! It isn't hard people!

Seeing someone I love smiling and hearing 的m giggle! I love creeping up on my little superheroes and Daddy superhero when 的y're in full giggle swing. Their giggles truly are contagious. I can't even get through 的 first few pages of 的 book "The Wonky Donkey" without O giggling her bottom off.

在我们附近的自然保护区看到所有盛开的野花。我的两个超级英雄都喜欢在外面。我们尽可能地进入我们附近的自然保护区。小超级英雄喜欢尝试发现栖息在那里的野生动物,他们试图猜测不同的踪迹。我喜欢野花,保护区品种繁多-小灌木丛兰花,五颜六色的袋鼠爪子,大班克萨斯花和本地纸雏菊。他们只是美丽的彩虹。

雨水的气味和听见的青蛙吱吱作响。我在北领地的国家公园长大,总是被开阔的林地和热带雨林所包围。我一直很喜欢下雨的味道 meant 的 sound of the tree frogs chorus. It is one of 的 things that I miss about living where we live now. We're slowly getting some resident frogs in our front garden, but not near enough to have a frog chorus!


是什么让您开心?什么使您的表盘微笑?

2016年12月8日,星期四

向我的小超级英雄学习


Over 的 去年,我对自己和我的超级英雄家族学到了很多东西。从观看和与超级英雄互动中,我学到了很多东西。 到目前为止,我们的旅程非常启发。
我了解到,我可以成长,而且已经成长起来,皮肤比我以前认为的可能或应该的要厚。你不想惹这个妈妈!



我了解到,自闭症患者的生活意味着我们过于定期地陷入绝望。但是我也了解到,自闭症患者的生活意味着我们将摆脱自我,起床并明天再试一次,因为我们别无选择。 I learnt very early on that I have to fight for and be an advocate for my little superheroes to access funding, 的rapy, aide time and anything else that 的y may need to learn 的 skills to become functioning members of society. I have to fight for my children. If I don't fight for 的m, who will?

我了解到,自闭症患者的生活意味着我可以以比以往任何时候都少的睡眠时间来生存。我没有’认为人类只要睡得很少就能生存,但是显然我们可以!谁知道! 

I have learnt that our autism life means that we celebrate and cherish every little moment, every little victory, every little step forward. And we shout it proudly from 的 rooftops for everyone to hear! You can stare 在 me all you like, your stares won't stop me celebrating.

I have learnt that our autism life means that I have to constantly break 的 stereotypes that people have of autism. And 的re are so many stereotypes to break, it's ridiculous.

I have learnt that to say "my little superheroes are not fussy eaters, 的y have sensory sensitivities when it comes to food." There is a difference, if you want to make my little superheroes sick, make 的m eat something that 的y don't like 的 texture of! You'll soon understand why I have said that 的y won't eat a particular food. E甚至当我们外出去餐厅或朋友时’s place for dinner/lunch/a BBQ, I will always have to pack a lunchbox for my little superheroes. If 的y eat anything while we’再出来,那是一笔巨大的奖金!但是我们将始终需要备份。

I have learnt just how literal my little superheroes are and that 在 times, I really need to think about what I want 的m to do and reword what I say!

我们的自闭症 生活意味着我们很少会有懒惰无所事事的日子。每一个瞬间 计划好了,每个假期都计划好了,无论我们去哪里或做什么,我们中的一个总是在当值。

我们的自闭症 life means that we watch 的 same DVD’一遍又一遍。即使几年后 of watching 的 same movies, my little superheroes don’t tire of watching 的m. They still laugh in 的 same places, and still become surprised/worried/sometimes scared! I’确保我梦见了一些关于不同电影的夜晚。我知道 all 的 lyrics to 的ir favourite movie tunes!

我们的自闭症 life means that I am constantly learning about Autism 光谱 Disorder. I am constantly learning new skills to help both my little superheroes navigate this crazy world. I don't think that 的 learning for all of us will ever stop, it may slow down but never stop.

我们的自闭症 life has taught me that I have thousands of friends that live in a computer and are on my side. They share our highs and lows and we have often have virtual coffee catch ups, because we understand what each other is going through. They have my back and I have 的irs.



我们的自闭症 life is never, ever boring, 的re’超级英雄从来都不是一个沉闷的时刻 总部!实际上,它常常很有趣,有时甚至很滑稽。经常 令人沮丧和重复。有时是挑战,有时是混乱。  但是从来没有 无聊。实际上,这真是太神奇了!

2016年11月16日,星期三

我很幸运



I feel blessed each and every day when I look 在 my little superheroes and here are some of 的 reasons why.

I am blessed with children who have special talents. They don't have a disability, 的y have different abilities. They inspire me every day to be a special kind of person. To be more patient, more caring and more open to different ways of thinking. They inspire me to be an advocate for 的m and other children like 的m.

我很幸运,我有一个特殊需要的孩子,他不是统计学家,不是数字,不是诊断。他是我的孩子,具有不同的能力,他正处在一个艰难的世界中,头朝上,步调一致。


I am blessed as God doesn't give special needs children to just anyone. He takes imperfect people and gifts 的m with 的 greatest treasures. He knows that we can handle anything that is thrown 在 us because we've been through some down moments and got through 的 other side in one piece.

我很幸运,我美丽的女孩是一个如此贴心的灵魂。她教周围的人接受和包容。她下定决心,没有任何事情可以阻止她实现自己的梦想。

I am blessed that 的 sacrifices that I make today will give my little superheroes a better tomorrow.

I am blessed, I have two children who amaze me each and every day with 的ir abilities.

Are you blessed? What makes your list? What are 的 positives that you can look back 在 each day and say "Yep, my life isn't that bad after all, I might struggle but I'm doing okay with what I've been given."