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2019年一月7日星期一

焦虑。它如何体现?


焦虑。

It's one of those tricky issues that is quite common in society 和 yet it seems to be some what of a taboo subject to talk about.

And it is all due to 的 fact that anxiety is a hidden illness.

社会上有些人似乎认为,如果他们看不到这种疾病,那就不存在。这使得成年人很难公开谈论他们的焦虑情绪。现在想象一下,谈论孩子的焦虑情绪有多么困难,不幸的是,有些人根本不相信孩子有能力承受焦虑。

儿童ren suffer from anxiety? How can 他们? 儿童ren have nothing to worry about. 儿童ren, 在 times, have a lot that 他们 worry about. 



友谊的困境。感谢NAPLAN,这要求学校向高水平的学术表现施加压力。他们在家里可能有影响他们的问题。同龄人的压力似乎在年轻时就发生了。被同龄人欺负。他们可能会担心朋友的担忧。

有些孩子可能向父母,老师或同伴表达他们担心的事情,而其他孩子则可能没有。 O是不会告诉灵魂她担心或焦虑的人之一。部分原因是她仍在学习如何识别焦虑的内在感觉。部分原因是她不想为自己的烦恼负担重担。

作为父母,我们被告知O不可能遭受焦虑困扰的次数令人震惊。这是因为她并不表现出焦虑。

您会看到,在儿童中,焦虑症可以多种方式出现。

O的焦虑是偷偷摸摸的,它看起来并不总是那么担心。 O's anxiety manifests itself in a variety of different ways, 和 it can differ from day to day.

So what should you be on 的 look out for? Read on!

O的焦虑听起来像是身体上的不适…。 “我的头酸痛,”“我的肚子痛,”“我的心脏跳动太快”,“吞咽时,我的喉咙痛,”“我的腿部肌肉受伤。”当她出现在生病的病房,似乎因病需要回家时,这使她很难上学。现在,我们有了O的流程图,可以在O上学之前完成工作,如果O确实确实在病态的病房里,还需要再次进行检查。十分之九,是她的焦虑导致身体不适。使用该流程图的希望是,学校教职人员可以尝试以帮助O的任何方式使她感到焦虑,从而确定她是否焦虑或实际上生病了。

O's anxiety can manifest as anger, verbal outbursts, irritability, defiance 和 frequent meltdowns. And it is well 和 truly after she has vented that we are able to get to 的 bottom of what is causing 的 anxiousness.

O's anxiety manifest itself as procrastinating in doing 的 things that she ordinarily loves to do like choir 和 cubs 和 sporting activities. O loves school to 的 point that when she is sick, she still wants to go. The mornings that she is overly reluctant to go to school, we know that her anxiety is 在 play. O有 always been a social butterfly, she struggles in social situations but she loves meeting new people so when she decides that she just wants to sit in her room 和 NOT be social, we know that's her anxiety speaking.

O's anxiety can manifest itself as becoming clingy, worrying about where other family members are 和 when 他们'll be home (even though she knows where 他们 are 和 when 他们'll be home.) Her anxiety can manifest itself as O asking 的 same question over 和 over 和 over again

O的焦虑表现为巨大的情感,无法形容或难以控制。提示崩溃中心。

O's anxiety can manifest as feeling physically, emotionally 和 mentally exhausted all of 的 time. Her anxiety can also present as fatigue …。 “我太累了不能玩,太累了不能跑步,我只想坐。”

O's anxiety can present as an overwhelming desire to control those around her, including her friends, 和 events that she is involved in. If O can control what is happening around her, she knows exactly what is going to happen 和 的 unknown becomes 的 known.

O的焦虑表现为无法关注她周围发生的事情。

O的焦虑表现为在学校对自己有很高的期望。

O's anxiety can also present as worry. O will worry about 的 big 和 的 seemingly small things in life. But to her, 的 small things are often 的 biggest.

O的焦虑表现为她扭曲头发,咀嚼衬衫的衣领,咀嚼或吮吸饮料瓶的盖子。 

O will internalise all of her anxious thoughts 和 feelings all day 和 的n explode in 的 afternoon 的 minute she walks 通过 的 front door.

在任何给定的一天中,您可能会在O中看到上述所有内容。其他日子,她可能只会出现其中的一两个内容。

O的焦虑表现出来的方式在许多儿童以及许多成年人中非常普遍。

The next time that someone says to you that 他们 are anxious 和 you just can't see it. Please take a closer look. Look 在 的ir body actions. Are 他们 desperately trying to tell you something.  



2017年10月29日,星期日

我可能是一个累了的妈妈,但我的孩子值得!


在继续之前,我想对所有正在阅读此书的父母表示敬意。无论如何,对我来说,做父母是我有史以来最有意义的工作。但另一方面,这也是最累人的事情。

I've written a post in 的 past about 的 缺乏睡眠 that we experience on a daily basis 和 I've come to 的 realisation that sleep is a rare commodity in superhero headquarters.

我现在要说的是,在某些日子里,我感到非常疲倦。我累死。精疲力竭的水平,无助于睡眠,休息或喝咖啡。

At times it feels as though I have no energy left 在 all 和 I am hoping that 在 some point in time all parents have reached this point of feeling totally 和 utterly exhausted.

如果您是一个从未达到这种疲惫状态的父母,请祈祷告诉我您的秘密。

What I have learnt on our journey thus far is that this level of complete 和 utter exhaustion is quite often reached much quicker in parents of children with special needs.

As parents we give 和 give 和 give to ensure that our children are fed, are healthy, clothed 和 educated.

As a parent of a special needs child, when you throw in 的 need to research 的rapy types, new ways to help your child, endless specialist visits 和 的n we try our hardest to be 的 best advocate for our children, this all adds to 的 exhaustion level. The 缺乏睡眠 is just 的 tip of 的 ice berg.

而当您达到这种精疲力竭的水平时,您绝对对任何人都毫无用处。

这种陈词滥调“你不能从一个空杯子倒出”,这是不正确的。


我们为我们的孩子做很多事情,但为自己花费时间也很重要。我们需要照顾好自己,才能照顾好我们的家人。

When we first began our autism journey I will admit that I felt very much alone. And 的n I met parent after parent who felt exactly 的 same as myself 和 I realised that we weren't alone.

在此旅途中,您肯定并不孤单。您只需要找到您的部落。

I have found my tribe - parents who have been 的re, parents who are currently 的re 和 those who understand.

When you find your tribe, you will gain support. You can support each other on 的 tough days 和 you can celebrate 的 successes together.



I'm incredibly fortunate in that my husband recognises when I am about to reach breaking point 和 visa versa.

"Go 和 get a coffee."

“洗个热水澡。”

"Go 和 get some sleep."


Statements such as 的se can be heard on a regular basis in superhero headquarters.

Reach out to your partner, reach out to trusted friends, reach out to family so that you too can have someone who has your back. Someone who will recognise 的 signs of exhaustion 和 remind you to 抽出时间.

Life is exhausting 和 it's okay to reach this level of exhaustion.

达到这种疲惫程度并不意味着您是一个糟糕的父母。这并不意味着您不爱孩子。

达到这个水平意味着作为父母,您做得很棒。

那我们怎么 抽出时间 当生活似乎过于忙碌而无法停下来吗?

需要超时时,您可以做很多事情。

读一本书 ........

洗个轻松的澡........

在外面散步........

Go 和 grab a coffee. A hot coffee. Alone ........

做一些让您想起自己的事........

Do something that brings you peace 和 joy. Something just for you ........



Our autism journey is beautiful. It is tiring but first 和 foremost it is beautiful. I love watching my little superheroes grow as individuals 和 learn new skills.

All parents are raising unique, smart, wonderful children 和 you need to hold your head high 和 keep moving forward, as you are doing an amazing job 在 raising your children.

我可能是一个累了的妈妈,但我的孩子值得!

2017年5月20日,星期六

Why is 的 Autism 光谱 Disorder diagnosis process so draining?


我经常被问到 about 的 ASD diagnosis process particularly 由即将开始的家庭 the process and also by those who are genuinely curious as to how Autism (ASD) is diagnosed. The two points that I initially always tell 的m is that 过程 is very long 和 it can be very draining. Hopefully by 的 end of this post, you will understand why.

The entire process from start to finish, 在 times, can take several months. L's diagnosis 原为 over 和 done with in about 5 months. O's diagnosis has taken 7 months 和 we are still waiting on 的 reports.

As you read 的 following post please keep in mind that this is generally what happens in Western Australia. The diagnosis process does differ from state to state 和 from 国家之间。保持相同的是在ASD诊断期间必须使用的标准-DSM-5。

开始 在西澳大利亚州针对12岁以下儿童的ASD诊断过程,必须首先前往 your regular GP 和 obtain a 转介to a 儿科医生。这本身可能会引起问题,因为并非所有GP’s are familiar with ASD 和 how 的 traits can be presented. Some people have found a lot of resistance from GP's to complete a referral, it is generally not 的 first line of management from 的ir point of view. Many GP's will suggest that 的 child be seen by a psychologist or that 的 parents 在 tend various parenting courses that are often available in 的 community. Other GP's may suggest medication for children presenting with anxiety.

我可以提供的第一条建议是从一开始就为您的孩子提倡。您越早得到诊断,您的孩子就可以越早参与急需的治疗。

一个人在您的小手手中被推荐,并且您已经联系了您选择的儿科医生, 您通常会被列入候补名单。甚至可能要持续数周或数月。 西澳大利亚州的儿科医生需求旺盛,相当多的人 很有选择性或不服用 除非有新的病人 对孩子的严重担忧。我们非常幸运地与L合作 他已经是我们儿科医生的病人了。当我打电话预约O时, 接待员建议我记下我们对O的所有疑虑,并将其附加到转介中。这样,儿科医生就可以基于所有这些信息来决定他是否会看到O。 to ascertain if enough of 的 criteria are met to warrant being referred onto a speech 的rapist 和 psychologist. Luckily (or unluckily depending on how you look 在 it) both O 和 L met 的 criteria in 的 DSM-5 for 的 paediatrician to make a provisional diagnosis.




我的下一条建议是 if 您想通过私人卫生系统进行ASD诊断,请为您的儿科医生提供尽可能多的书面证据,以便与GP一起转诊。 这将经常 协助儿科医生确定是否接受您的孩子。

在西方 Australia, a child under 的 age of 12 years must receive three separate diagnosis –儿科医生,演讲 and psychologist – 和 all three must be agree with each other. If one of 专家 disagrees, an ASD diagnosis will not be made.

和我们一起 paediatrician referred him to Intervention Services Autism 和 Developmental Delay or ISADD. ISADD is basically a one stop shop 和 have access to speech 的rapists 和 psychologists, however 他们 are very expensive. As well as assessments, ISADD can also provide 的rapy, advice 和 support.

有了我们 儿科医生将她转介给 在我们当地的儿童发展中心看语言治疗师。 O已经在一名儿童心理学家的照顾下,因此覆盖了一名专家。

From gaining 的 转介to 的 initial appointments, 的 time period 原为 around 6 months but that 原为 obviously 通过 的 private system.

当O was in Kindy she 原为 referred 通过 的 public system for her speech issues which 在 的 time were unrelated to ASD. Her Kindy teacher completed 的 转介和 it 原为 处理 通过 one of 的 local 儿童发展中心。

This 转介和 subsequent appointments were free as it was through 公共系统,但是公共卫生系统中的候补名单是 ridiculous. A friend of mine is currently in 的 ASD process 通过 的 public system 和 it 已经结束了 a year since 的 转介原为 done. They are still waiting for a paediatrician appointment. A 转介done 通过 的 school system is 处理 through 的 closest 儿童 Development Centre to 的 child's school. Once 的 转介has been 处理 的 child is 的n put into 的 system to whichever centre has a place available.

I have been told that 的 wait list can depend on how much information is in 的 referral – 的 more information that is in 的 转介means potentially a shorter wait list time. O’s referral was put 处理 in term 1 of Kindy, we received 的 letter of confirmation term 3 of Kindy 和 we received her first appointment in Term 1 of Pre-Primary. That 原为 purely for a speech issue 和 it took just over 12 months.

One of 的 positives about doing it this way is that once 的 child is in 的 public system, they will not be discharged from 的 service until 的 issue has been diagnosed or 的 child has made significant progress. O 原为 in 的 public 第一次约会后的18个月中,她的演讲系统一直很好。



如果您确实决定继续进行诊断过程,则 third piece of 我的建议是尝试 to NOT prepare 您的孩子的约会,无论是私人约会还是私人约会 public.

This sounds dreadful but it is honestly best for 专家 to see your child as 他们 would appear day to day with 的ir typical behaviours, 的ir stims, meltdowns, anxiety 和 so on. I know of several families who prepared 的ir children beforehand so that child knew what to expect. In doing this, by 的 time 他们 got to 的 appointment 这些孩子 were so familiar with 的 environment that 他们 made eye contact, 他们 stopped stimming because 他们 weren't as anxious about 的 specialist visits 和 他们后来 与治疗师交谈。 So while the children met most of 的 ASD诊断标准 the specialists decided that because 这些孩子 made eye contact 和 were sociable 他们 could not have ASD.

It is incredibly distressing, but 的 more your child is 行为自然,更具挑战性的行为 the specialists are able to view 和 document.

我得到的最后一条建议是在评估过程之前,我们写下了我们记得可以追溯到出生的每条小信息。 所有奇怪的行为,所有错过的里程碑,睡眠问题,痴迷,感官敏感性, the repetitive behaviours 和 so on so that when it came time to answering questions, nothing would be missed. This 原为 incredibly useful as we were able to keep focused on 的 questions rather than dwell on 的 apparent negativity.

评估过程中提出的问题可能非常个人化,它们使您对孩子进行仔细的观察,他们可以指出  和 focus on 的 negative behaviours that your child exhibits 和 在 times 他们 can cause you to question your own behaviours. Having all 的 information in front of you to refer to means that 的re is a lower chance of you missing any vital information.



The ASD diagnosis process is very lengthy 和 extremely draining, both emotionally 和 mentally for 的 child but also for 的 child's family. While you are on 的 diagnosis journey it is important to keep 的 end goal in sight 和 in 的 back of your mind. Keep reminding yourself that you embarked on 过程 to ultimately gain assistance for your child. This is what has kept us going for both O 和 L. While 过程 is draining, 的 end goal is rewarding.

2017年4月14日,星期五

我真的不是反社会的。


Just lately I have felt very anti-social, but I'm really not. I do enjoy 的 company of others but 的re are times where I would just prefer to be 在 home with my family 和 here is why.....
I start my day, every day, 在 6am or earlier depending on how much sleep L has decided that he needed 的 night before 和 how early O decides that she needs to wake up.

Most mornings 的re is an argument over my phone 和 it is easier just to give in as no one wants a meltdown 在 6.01am or earlier!

I've learnt to pick my battles, 的re are some that really aren't worth fighting over.

有的早晨运行平稳,有的则没有。如果错误的人使L下床,或者早餐三明治被错误地切开, 如果他的短裤不舒服或有口袋, 或电视上放错了节目,那么所有的地狱都会崩溃。

喝咖啡的时间#1。

午餐,我们非常幸运,因为我的两个小超级英雄在学校吃的东西都非常可预测。他们的午餐盒内容很少变化,所以这是早晨的快速部分!

Depending on 的 day, depends what needs to be prepared.

Breakfast on 的 other hand, this can go on 和 on 和 on....... If able to, I am sure that L would just keep eating. Most mornings we have to put a stop to L's eating otherwise we would never leave 的 house on time!

喝咖啡的时间#2!



If it is a Tuesday, my day off of paid work, 的n I spend 的 morning doing a school run, making phone calls to specialists, playing phone tag with our two support coordinators, trying to get in contact with our funding manager 和 attending to emails. Then it is back to school by lunch time to collect L to take him to 的 early intervention centre before returning 的 school to collect O 和 的n back to pick up L.

By 的n I have lost count of how many coffees I have had.

Then you can add in doing 的 weekly shopping, paying bills, chasing up medication scripts, trying to figure out 的 NDIS portal, don't get me started on that abomination, 和 any of 的 little superheroes extra curricular activities!

Any other week day I head off to work after either dropping 的 little superheroes 在 school or 在 before school care. I do enjoy heading off to work as I get to leave my stress 在 的 door 和 can concentrate on doing my job. Work for me is a welcome distraction from our autism journey.

Saturday is swimming lesson time. Sunday is spent trying to catch up on 的 previous week 和 getting everything ready for 的 following week.

如果我对没有约会的比赛日期说不 park it is because I know that L will try to escape 和 I will spend 的 entire time following him around 的 park. 家 or a fenced park is 一个更好的选择。

我很少有一天没有计划什么的休息日,所以当我得到“休息日”时,老实说我不喜欢社交。

My last Tuesday day off, I spent a total of 40 minutes 在 home between leaving for 的 school drop off 在 8am 和 arriving home 在 4.30pm after collecting both little superheroes. Tuesday really isn't a day off for me 和 when I am asked "how 原为 your day off," 在 times I really want to turn around 和 say well actually.....

The rare moments that I do get to myself, I either want to sit 和 do nothing or sleep to catch up some much needed zzzzz's.

或者我想与我的小超级英雄一起度过宝贵的时间,只是与他们一起玩耍或阅读,或者看着他们玩耍 and be creative.

所以我真的不是反社会的,我只是累了。

2017年3月22日,星期三

为什么要成为倡导者既困难又有益。


I have always been one to stand for what I believe in 和 back people when 他们 need me too. Even if 的 situation will put me between a rock 和 a hard place 和 potentially make life uncomfortable, I can be counted on.

Having two young children who are both on 的 spectrum has meant that I have become 的ir advocate 和 I feel as though I am constantly between that rock 和 的 hard place. And let me tell you, this advocate business can be brutal 和 it is hard. Really hard.

As a parent it is our job to make 的 decisions that ensure our children's health, well being 和 best interests are looked after. Add being an advocate to that 和 的 parenting gig becomes a whole lot more complicated.

There are advocate agencies that can do all 的 hard yards for you but 在 的 end of 的 day, 他们 get to go home. They get to switch off 和 relax. Their invested interest in you 和 your family is purely a financial interest 和 not necessarily a personal interest.

Being a parent as well as my little superheroes advocate means that I don't switch off, not fully anyway. I am thinking 24/7 about how I can best help my little superheroes. It is much more personal 和 much more intense.

As an advocate you have to learn 的 jargon 和 talk 的 talk. You have to learn 的 correct terms to use when speaking with funding bodies. You have to try 和 predict your child's future needs. And 在 times 的re is a very fine line between accommodating your child's needs 和 enabling 的ir helplessness.

作为倡导者,您必须做出一些非常激烈的决定。可能影响我的超级英雄未来的决定。我们也申请哪个资助机构?哪种疗法最能帮助我的小超级英雄?哪种疗法提供者可以为我的小超级英雄提供最佳疗法?上什么学校?支持人员还是没有支持人员?我们需要哪一位专家 推荐给?而这样的例子不胜枚举。


As an advocate people can become peeved 在 you very quickly 和 on a regular basis. I have one particular person 在 的 moment who I am fairly certain is avoiding me 和 my phone number! I am sure that every time she sees my number come up on her phone she starts thinking "goddammit, not her again, what does she want now?"

成为拥护者的确会使您不喜欢某些人,这会使您在为孩子而战时感到不舒服。可能引起愉快的谈话 以惊人的速度升级。 有时我确实觉得自己很烦,我是一个举止过度,反应过度的父母 当我需要再次联系代理商或学校时。作为倡导者,您必须一遍又一遍地处理事情,并且必须打电话 and send emails that no parent wants to make. You have to question decisions that other people make for your children 和 this in itself can cause friction.

Being an advocate is tiring, emotionally, mentally 和 physically. I am constantly doing research into different 的rapy 和 sensory aids, making phone calls, sending emails, constantly evaluating everything. It is exhausting 和 I have to constantly remind myself to 抽出时间 for me.

Being an advocate feels like you have to break down barriers on a much too regular basis. It honestly feels like a minefield 和 some days it feels as though we take one step forward 和 three steps backwards. There is always a hurdle to climb over or a hoop to jump 通过. And 的n when you finally think that you have got it right, boom, the goal posts shift 和 you have to start all over again.




成为倡导者也是一种非常有益的经历。

You get to meet 和 make friends with some fairly 令人敬畏的人。 不会三思而后行的人。花费大量时间来帮助我们的人们,因为他们真的很爱 我们的小超级英雄。 These people become part of your inner circle 和 you can count on 的m. Their invested interest becomes a more personal one.

成为倡导者意味着在某些情况下,我们已经能够为 funding 和 others will benefit. We've done 的 hard yards so that others don't have to. They can learn from our experience.

成为倡导者意味着我能够将我的知识传授给其他寻求帮助的人。我们 have 的 opportunity to educate others 和 to raise awareness of autism. Yesterday I took O to a fabric shop to purchase some fabric to make her sensory body sock. 当店员问我们在做什么 fluro pink spandex, O 和 I were able to introduce her to a new concept 和 的 shop assistant 现在知道什么是感官袜子,如何 it actually works 和 的 benefits of it.

成为倡导者意味着我已经看到我的小超级英雄取得了最惊人的进步。我已经走了 in such a short 多少时间。我爱 watching O maturing in how she handles different situations 和 how she is now wanting to help her friends who suffer from anxiety.

As an advocate I have become mentally stronger, tougher 和 more stubborn, if that is possible! I have 了解更多关于我自己的信息。我了解到我有能力应付困难的情况。我了解到无论我们有多低 旅途可以成为,我将永远尘埃 myself off, get back up 和 继续。

It would be easier 和 quicker to give in 和 I can see why people do just that. But 的n what sort of 未来会离开我的小英雄吗?


我为超级英雄们树立了什么样的榜样 by giving in?

我希望我的小英雄们意识到为正确而战是可以的。 O has 已经开始通过在朋友被排斥或被排斥时支持她的朋友来做到这一点。我希望我的小超级英雄相信他们能够胜任更多。而且即使困难,令人恐惧或筋疲力尽,他们仍然能够继续前进。

Why do I continue being an advocate? Because that is my job as a parent. Every child deserves 的 best 和 every child needs an advocate until 他们 find 的ir own voice. It is my job as a parent to ensure that my little superheroes voices are heard.

Being an advocate is hard but I will keep being 的 advocate for my little superheroes for as long as 他们 want 和 need me to. I wouldn't change anything for 的 world.

Being an advocate is hard but 的 rewards far outweigh 的 difficult moments.

2017年2月24日,星期五

Life is like a Rollercoaster with Scary Clowns Lurking in 的 background


一些 几周前,我们度过了非常非常有趣的一周。当我说有趣时,我的意思是挑战,压倒性,沮丧 exhausting 和 heartwarming. And it’一直带我到现在 up 的 courage to write this.

Daddy superhero 原为 away for work 和 的 little superheroes really struggled to understand where 和 why he went.

他们俩都知道,有时候爸爸必须继续 aeroplane for work but 他们 haven’t quite grasped 的 concept that it doesn’t mean that he’s gone on holidays. O有 started calling his work trips "workadays." O knows that Daddy is doing work but she also thinks that Daddy is doing some sight seeing.

在L’s mind, 的 last time that we all went to 的 airport, we went on a fun holiday. So L 原为 adamant that Daddy had gone on a holiday too, without us. It 原为 quite logical to a 4 year old 和 you can imagine 的 response that 的 thought of Daddy going on a holiday without us brought on.

L also decided that for that week sleep 原为 optional, every night.

By Friday morning I 原为 completely overwhelmed by 的 little superheroes, by 的 缺乏睡眠 和 by 的 subsequent stress that 的 week brought on me. This feeling of being completely overwhelmed brought on a panic 在 tack, 的 first one that I have had in a very, very long time 和 I ended up 在 my GP where one of nurses made me have a sleep. Thank you Sue xx

The week ended well, I caught up on sleep, L 和 O caught up with 的ir friends 在 a birthday party 和 a lovely friend came over to help with 的 little superheroes. I can’对Alisha表示足够的感谢。

但是那一周让我想到了自闭症的旅程 确实可以比作在游乐场上的过山车。

一般而言,生活可以比作过山车。生活可以是美丽的,疯狂的,情感的, exciting, frustrating, difficult 和 amazing all 在 的 same time.

有很多片刻的喜悦,激动,激动 and laughter. There are 的 photo moments that I want to etch into my brain so that they’ll last forever. Then 的re is 的 fear 和 anxiety 和 self-doubt that I am doing enough for my little superheroes, could I be doing more, should I be doing more?


We have days where I am 的 mum who is waving proudly from the sidelines as my little superheroes tackle life on 的ir own. These are 的 days when I am cheering 的m on as 他们 learn new skills, watching 的m make huge gains 和 wanting to give 的m constant high fives to celebrate 的ir successes!

有时候我感觉自己在做碰碰车, forever knocking obstructions out of 的 way so that 的re is a clear path 为我的小超级英雄前进。

Then 的re are 的 days, weeks even, where I feel that I am hurtling downwards on a white knuckle, out of control, jaw dropping roller coaster 和 I feel as though I have no control what so ever over 的 ride that we’重新。感觉好像我们没办法下车 and I end up wondering whether 和 how we are going to survive.

然后是可怕的小丑。严重的是,L有小丑恐惧症,甚至还有小丑的照片。小丑使L朝与他们相反的方向跑得非常快。那些日子,我不知道我们如何生存。 Days like 的se I just put one foot in front of 的 other 和 keep pushing forward.

We all go 通过 的se ups 和 downs. Sometimes 的re are more ups 的n downs, other times 的 ratios are reversed. Throughout this ride called life we have two choices - we can scream 和 try to hide or we can try to enjoy 的 ride.

I chose 的 latter. I have no choice but to ride this rollercoaster so I muster 的 strength that I need to navigate 通过 的 Autism minefield 和 simply get on with life. If I didn't try to enjoy 的 ride, I would end up in a very dark place. All of 的 time. Not a pleasant thought.

Why do I chose to enjoy 的 ride? Because I love my children. They are my world 和 I will never give up, no matter how insecure 和 alone I may feel 在 times.

自闭症没有’t go away, 和 believe me I have been asked this question many times! 自闭症的确变得更容易管理。

您永远无法预测未来会发生什么,这是 the great mystery of life. So 的 next time that you feel as though life is throwing you a curve ball 和 is getting you down, just remember that life changes. Nothing stays 的 same forever.

And in 的 meantime, hold on tight 和 keep going.



2017年2月17日,星期五

什么时候停止?


I've been asked on quite a number of occasions by parents who have newly diagnosed children as well as individuals who have very little to do with 的 Autism world "when does it stop? When do all 的 endless specialist 和 的rapy appointments cease to exist?"

I would love to say that I have 的 answer. But 的 truthful 和 honest answer is that I don't know. I truly do not have an answer, or a solution in fact, to 这个问题.

我能告诉你的是这个..........

Since we received L's diagnosis in 一月 last year, 的 specialist appointments for L have become few 和 far between. With L we are 在 的 stage of follow up appointments 和 的se are usually six to twelve months apart.

L的疗法已合并为一处。我们不再需要拜访两个或三个不同的专家。他需要的所有疗法都在一周的一天的一个时段内提供。

在今年年初,我们 were lucky enough to be provided with a lovely support coordinator 通过 的 自闭症协会 who liaises with all of L's service providers. Our support coordinator does all 的 leg work for us 和 comes to us with solutions. It is wonderful. Mind you 的re is a fee involved but her work behind 的 scenes is well worth 的 monetary value.

The 自闭症协会 are, in our eyes anyway, experts in 的 Autism field 和 as such we are drawing on 的ir expertise 和 knowledge to find 的 best service providers to assist us with helping L, 和 eventually O.


I can't stress enough 的 importance of early intervention 和 keep in mind that early intervention services can come in many different forms. The way that we see it is if we are able to provide L with 的 的rapy now in his early years of life, as he grows older he is already going to be equipped with 的 skills that he requires to navigate 通过 life.

L目前的疗法相当广泛,但我可以想象,随着他更好地学习如何治疗自闭症,这种疗法可能会放慢速度。我简直看不到治疗永远停止,但我看得出他可能不需要 as much.

The same can be said for O. If we are able to assist her now to gain 的 skills 和 knowledge that she so desperately needs to manage her anxiety 和 social awkwardness, 的n later in life she is going to be much better equipped. O may still need some 的rapy, but again fingers crossed not so frequently.

Now in saying all of this, 的 level 和 intensity of 的rapy required really depends on 的 diagnosis level. I simply can not imagine how much more difficult life would be with a child who is non-verbal. I would imagine that 的 的rapy involved would increase ten fold.

自闭症永远不会消失。这不是可以用  magic pill.

我已经意识到,我们正在学习用自闭症来管理生活。由于自闭症的诊断,生命不会停止,我们不得不进行调整。我们不得不无限期地搁置家庭议程上的其他项目,但生活还没有完全停止。

我们可能不得不不断进行调整 on this Autism journey 和 we do this because my little superheroes are worth it.

2016年10月31日,星期一

焦虑 和 的 delayed effect

Disclaimer: I'm not an expert on anxiety disorders, I'm just commenting on what we see on a very very regular basis. If you feel that you have issues with anxiety, 的 best advice that I can give you is to go 和 see your GP.

This afternoon O walked 通过 的 door 在 home 和 immediately I knew that something 原为 up. O didn't have to say or do anything, I just knew. Call it mothers intuition, call it picking up on cues, call it what you like, I just knew that something 原为 wrong. I knew that her anxiety had been eating 在 her all day 和 that I 原为 about to see 的 delayed effect.


I knew that O had had a tricky day 在 school 和 that she had managed to hold it together for 的 entire day - 在 before school care, 在 school 和 in 的 car on 的 way home. I knew that she didn't draw 在 tention to herself all day 和 that very shortly, cyclone O 原为 about to hit.

O可能整天都显示出一些小体征,这些征兆表明,熟识O的人或有儿童焦虑症经验的人可能在一天的早些时候发现了。 O可能一直在刺激,她可能一直在嚼衬衫,或者她很烦躁。这些都表明她的焦虑开始逐渐消除,开始消耗她的所有想法。 O的小提示可能已被遗忘,或者可能被误认为是疲倦。

I'm not sure that O is able to recognise that her anxiety is rising until it's too late 和 的n because O有n't learnt 的 skills she needs to lower her anxiety, she starts going round in circles which in turn increases her anxiety. It's a vicious circle 和 it is one that she struggles to get herself out of without assistance.

As we walk 通过 的 door, all 的 remaining energy seeps out of O 和 I can see her deflating like a balloon. O's face tenses up, she has red cheeks, her body is stiff, her speech is reduced to very short simple sentences 和 she constantly has her shirt in her mouth. O needs a snack to eat but we don't have 的 right ones in 的 cupboard. Our lorikeet squawks hello too loudly, L runs past too quickly.



I try to engage O in conversation to distract her, to get her mind out of 的 anxiety trap, but she isn't able to answer as 的re is a fog that surrounds her 和 she isn't able to process what I'm saying.

O starts to get angry 和 she's no longer in control of her body, she starts to lash out 在 L. L 的n lashes back 和 round two has begun.

O is in full meltdown mode, 的re is no turning back. All her pent up frustration has to come out. O kicks 和 screams 和 lashes out 在 anyone that comes close. We just have to let her ride it out.

This, my friend, is 的 delayed effect.

一些医学专家称其为“延迟效应”。其他人则称其为“高压锅”情况。还有人称其为“流行现象瓶”。

The delayed effect is a very common challenge that many children 和 adults with ASD face on a daily basis. I would say that individuals who suffer from  anxiety may also experience 的 delayed effect. And 的 tricky bit is that quite often people outside 的 family unit don't ever see this other side. Parents will describe 的 child one way, schools see a completely different side. It's almost like a Dr Jekyll 和 Mr Hyde type situation.

Some children are able to hide 的 signs of anxiety very well. They can often contain 的ir feelings 和 的ir teachers remain blissfully unaware of 的 rising stress inside 的ir students. The child's teacher will often not believe, or 在 least struggle to believe, 的 parents or may not understand, as 他们 may never see this other side of 的 child.

当我们试图解释O的另一面时,我们被告知-
“但是她总是很高兴,她不能焦虑。”
“她微笑很多,她有很多朋友,没有什么可担心的。”
"But she's so polite 和 friendly in class, she never yells."
I'm sure that 在 times, her teachers think that we are fabricating how O behaves 在 home. It 原为n't until I recorded one of her meltdowns, that people started believing what we described 和 took us seriously.

一整天焦虑的上升可能是由于许多原因造成的。在课堂上可能引入了一个新主题。课堂阅读组可能已更改。教室可能已重新布置。可能有一位减压老师跳舞。 O可能很难理解她老师设定的任务。课堂上的噪音水平可能过高。

I liken anxiety to that of a duck paddling on a lake. Above 的 surface of 的 water, 的 duck appears so graceful, gliding along 的 surface. Below 的 water, 的 duck is paddling away furiously just to stay afloat. It's exhausting for 的 duck 和 after a while, 的 duck needs to take a break.



O's break is 在 home. O is somewhere safe, she is somewhere familiar 和 simply can't contain 的 pressure anymore. O feels safe 和 secure with us, we understand her, we won't judge her 和 won't hate her for whatever she may do or say. We're 的 predictable part of her day, we're her calm.

After 的 meltdown, exhaustion sets in. The exhaustion doesn't just hit O, it hits L, her Dad 和 myself. It's hard being a mum on 的 receiving end of 的 delayed effect as it holds no prisoners 和 it really doesn't care who it hurts in 过程. I can't even imagine how it feels for O. She is beginning to express how it feels, but she doesn't fully understand 的 how or 的 why it happens.

O is gradually learning 的 skills she needs so that she can recognise her rising anxiety levels 和 so that she can get herself out of 的 vicious circle. We use a combination of story books, breathing techniques, essential oils 和 sensory toys to help O to relax 和 calm down. Sometimes 他们 work, sometimes 他们 don't. We also take O to see a child psychologist so that she can learn strategies to help her when she starts to feel anxious.

延迟的影响是真实的。相信我。患有焦虑症的人需要支持,而不是难以置信。因此,下一次您会听到有人说他们或孩子患有焦虑症,请不要轻信他们。提供支持。是他们可能需要的那种友好的耳朵。是他们的可预测的。

2016年10月23日,星期日

是时候照顾我了


After being on holidays for three weeks 和 being able to relax 和 do absolutely nothing, getting back into 的 normal day to day routine 原为 a bit of a struggle. So I decided that each weekend I am going to try 和 have some me time, even if it 原为 just 5 minutes to recharge my batteries.



经营Facebook小组的这位出色女士, Autism Living Life on 的 光谱 , that I am part of posted a #selfcare Sunday to-do-list, so I am going to borrow her list 和 expand on it.

所以,这是我的#selfcare待办事项清单!

喝杯咖啡-试一试,但可能会喝杯咖啡。
享用早餐-当我的烤面包仍然很热或至少很热的时候。如果天气转凉,我会做得更多!
Nurture Me - warm shower, relaxing bath, without 的 little superheroes in with me!
Relax - sit down in a comfy chair 和 not do a thing for a change.
读一本书-我决心减少在手机上玩的时间。而是要读书,或者是给我读书,还是给我的小英雄们读书。
早点睡-我的意思是说,我的小超级英雄不久后就入睡了。请注意,晚上8点以后随时可以!



享受在户外的乐趣-我的小超级英雄喜欢让我们观看他们的比赛,因此我将确保自己花时间做这件事。不要在外面挂衣服或收拾东西,只是在外面看着他们玩!
Going for a walk - each day on our holiday we went for a family walk. It 原为 great, we loved it 和 的 little superheroes loved it. We're going to keep doing this, perhaps not each day as some mornings are just crazy!
做一些烘烤-与小超级英雄。饼干,松饼,我们都知道,只是一些不同的小吃。

您今天做了些什么来养育自己?可能不是其中之一,但是总有总比没有好!



我们花了很多时间来确保我们的小孩子还好,所以现在该养活自己了,您需要为自己所做的出色工作而表扬自己.....因为您做的很棒!

如果您是一个很棒的支持小组的追随者,我真的建议您 Autism Living Life on 的 光谱 . It is a forum full of very supportive individuals, loads of great information 和 a place where everyone is accepted for who 他们 are.

2016年9月24日星期六

有时候我只需要逃跑.....

Don't get me wrong, I absolutely adore my little superheroes 和 would do anything for 的m, but 的re are times when I need to escape 和 do something for me.

As 的 saying goes "you have to look after yourself before you can look after others" 和 it is so true.

Last week I 原为 flat out with work, looking after my little superheroes 和 my husband, 和 getting everything ready for our holiday that I neglected myself. You know 的 feeling - your head is stuffy, you have a lingering headache that just won't go away, you feel like you have no energy, you just want to crawl into a warm bed, curl up 和 go to sleep preferably without 的 little superheroes in 的 bed too. Yep, well 原为 me last week but you have to get on with daily life.

I said to my little charges 在 work that I 原为 going to miss 的m while I 原为 on leave. Nah, who am I kidding, I'm going to relax 和 try not to think of 的m so that I can go back refreshed 和 ready for next term!

I discovered very quickly into our Autism journey that I needed to find something to do to relax. Be it reading, spending time outdoors, take up a hobby, do some running - I don't run unless I have to so that is out - just something that I could to do to take my mind off of what 原为 happening in our busy household. Something that meant that I could just chill out 和 relax. Something that I could do late 在 night when L 原为 in a I-don't-need-to-sleep mood that wouldn't disturb 的 rest of 的 family. Something that we could do as a family that didn't cost a lot 和 原为 fun.

I love reading, I set myself 的 task of completing a reading challenge earlier this year. I'm kind of on 的 way to completing it 和 I have read quite a few books so far. I've discovered old gems that I'd forgotten about or put off reading 和 I've also discovered new books that I wouldn't have thought of reading. It has also been great for my little superheroes to see Mum reading a real book, rather than reading an e-version on 的 iPad or 的 phone. Nothing beats having a real book to read 和 it is great role modeling for 的 little superheroes!


我还阅读了很多关于自闭症,焦虑症,阿斯伯格症,感觉加工障碍以及与这些主题相关的东西的出版物。我认为,我对它们的了解越多,与我们所见的所有治疗师和专家进行交流时,我就会越有见地。如果我能保持最新状态,那么也许我可以将知识传递给L和O的老师。我想知道L和O的大脑每天都会经历什么,为什么它们会以某些方式对某些事物做出反应。阅读这些出版物使我大开眼界,使我意识到有时我需要改变与O和L交谈的方式。

园艺-O和L喜欢在外面,与我们的动物馆玩耍,挖土,像疯子一样到处乱跑!今年,我们决定在后院制作一个素食补丁。这是一个很好的开端,O和L帮助选择了要种植的植物,走进去创造补丁并照料它非常轻松。 O的仙女朋友来了,为她创建了一个仙女园,为L创建了一个恐龙园,所以他们会花几个小时来玩弄仙子留下的零碎碎片。然后我们的兔子找到了一条路,孩子们“除草了”。因此,不幸的是,蔬菜补丁已被忽略了一点。这是第四学期的工作清单!

The other way that I relax is to be creative - sewing, cross stitch, crochet, drawing, give me a project 和 I'll give it a go.



今年一月,我列出了今年要做的事情:
  • Teach myself to crochet - I can tick this off my list. I taught myself to crochet by watching youtube clips 和 not once did I swear or give up or throw everything across 的 room! Next step is to 在 tempt more complicated patterns.
  • Make an item every week of 的 year - Yep, can tick this off too. We're up to week 38 和 so far I've made 104 items. I've made sensory gear for my little superheroes. I've mastered how to make Bucket Hats as O decided that everyone needs a bucket hat. I've made clothes 和 toys for my children 和 的ir friends. I've made gifts for people, I'm planning to make gifts for my little superheroes teachers. I've made book week costumes for both my little superheroes. I've 在 tempted patterns that I thought were beyond my ability 和 I've had a ball so far!

  • Rediscover cross stitch. This is something that I used to do all 的 time 和 的n it fell to side when O came along. Now I just need to work out what to do with 的 finished pieces.
  • 我想完成所有UFO或未完成的物品,这些物品似乎要在今年年底之前放在缝纫机上。快到了,只有几个去!
  • I wanted to make resources for O 和 L - can tick this off 的 list too. There are so many homemade toys 和 resources that can be made. Do you know how many common items 的re are around 的 house that can be turned into a sensory toy?
It is very satisfying to have an idea of something to create, pick out a pattern or 在 times draft a pattern from scratch, chose 的 fabric/wool/cotton 和 的n slowly see 的 final product come together.

I have noticed that when I don't get 的 chance to do something for me, I start to fidget 和 am unable to relax 和 I become a little anxious. I guess it is a bit how O 和 L feel 在 times - 他们 struggle to sit still, 他们 struggle to concentrate 和 他们 need to express 的mselves in a very noisy manner.

When I am sewing - be it hand sewing, machine sewing, cross stitch - I go into my own little world 和 block out what is happening around me. I can escape from reality for a while!

因此,如果您正处于称为“自闭症”的奇妙旅程中,请从事一项爱好,以便逃脱。比坐在浴室的地板上哭泣要好得多,相信我!

2016年9月6日星期二

它是什么?是发脾气还是崩溃?


One of 的 biggest 我们每天在超级英雄总部处理的问题是 行为。我知道所有父母都必须处理行为问题,但要纪律处分 a child on 的 autism spectrum is, 在 times, a little more stressful than disciplining a NT child.

在我们终于得到之前 a diagnosis for L, actually long before we even started 的 assessment process for L, we had a lot of well meaning people, well I hope that 他们 were well meaning 和 not just arrogant sods, try to give us advice on how to deal with L’s 行为。有人告诉我们,我们应该像以前一样参加育儿班 doing obviously 原为 not working – 和 yet it 原为 working for O. 我们被告知“oh he’只是一个典型的男孩” 和 “he’只是表现出他的本色” – what???? We were told “if you just ignore him, 的 tantrums will stop” – we tried that too 和 guess what, 他们 didn’t, he’d just 继续。

L’s tantrums, well we were told that 他们 were tantrums, were one of 的 many reasons that we continued to seek advice from medical professionals. It 原为 only when we started doing a little reading that we came to 的 realization that he 原为 in meltdown mode 和 的n everything started to make sense. Sure, 的re were times and still are times when he is just chucking a tantrum but 的 majority of his 和 他的姐妹们都崩溃了。


你看到发脾气了 a defined want – it starts over a desire to want something, 的 child will often look 在 you to gauge your reaction 和 a tantrum will stop 和 start with ease. Quite often 的 child will stop when a) 他们 get what 他们 want or b) 他们 realise that 他们 aren’t getting 的 reaction that 他们 wanted. You can reason with a child having a tantrum, you can sort of talk with 的m to help 的m calm down. During a tantrum, 的 child is in control of what 他们 are doing 和 他们 may make demands – “I’如果让我看电视,我会停下来。”

A meltdown on 的 另一方面是巨大的天气预报,有时您会看到酿造, 只是要顺其自然。崩溃不是目标导向的。一场崩溃 is usually caused by 的 child being in sensory overload by 的 environment around them –太多的噪音,太多的人,改变常规,明亮的灯光, tiredness, strange smells. During a meltdown, 的 child has no interest in how you are reacting to 的m, 他们’re not in control 和 may injure 的mselves because they’re not aware of 的ir surroundings. 崩溃 can be very, very slow to end. 崩溃 are noisy 和 他们 suck 的 energy out of 的 child 和 在 times, out of 的 parent 和 siblings.



现在像许多父母一样 with children on 的 spectrum, I can see potential triggers from a mile away. I 将尽我所能避免所说的触发器。我有分心的武器 放在我的手提包里’m not able to avoid 的 triggers, I can 在 least attempt to disarm 的 triggers 和 try to make outings easier for my little superheroes. And if all 的se don’t work, 的re’真的不需要发出任何警报, 我的超级英雄的尖叫声足以警告我们周围的人 出了点问题。如您所见,当我的两个孩子都崩溃时 舞台上,炸弹消失了!!绝对没有什么可以说或做的 talk 的m out of that mode.

这不是说 that we just let 的m go – c’孟跟我一起唱歌,随它去吧,随它去吧,可以’t hold it back anymore. Sorry totally off tangent, not that let it go! Sometimes, 的 little superheroes just have to scream it out 和 other times, 他们 are receptive to us cuddling or trying to distract 的m.

就像我知道 我的小英雄触发因素是,我知道有时候我只需要让 them get all 的ir anger 和 frustration out. They need to yell 和 scream 和 throw things. Sometimes I am just so emotionally 和 mentally spent, that in 那一刻我只是举起手,希望有人能把我送到时间 out, walk away, take a deep breath, count to ten 和 go back in for more.

有时候我能感觉到 that I will be able to calm 的m down quicker if I sit with 的m. No talking, no cuddling, just sit 和 be with 的m until 他们’准备来找我。

And 的n finally, they’ll come crawling over for a reassuring cuddle 和 ask for a tissue. I’ll wipe 的ir face 和 start thinking that maybe, just maybe 的 storm has finally passed 和 I’ll also be hoping like hell that 他们’不为回合充电 two. And 的n I’ll find L’s green blanket or O’s bitty bug, sit on 的 couch/bed/bathroom floor cuddling 的m 和 waiting for 的m to fall asleep.

他们花那么多钱 energy during a meltdown, that 他们’ll often fall asleep afterwards 和 that’s when my heart breaks 和 my tears will flow as I know that 在 times, 的re is 我绝对无能为力,无法阻止崩溃。我只需要 there for 的m so that 通过 的 meltdown fog, 他们 know that we love 的m and are 的re for 的m no matter what.

我提醒自己 the behaviour 原为n’t done on purpose, it 原为 done for a purpose. L or O were 试图告诉我一些事情,但是在那一刻’t able to express 的mselves using words.

I’ll 的n begin to wonder: how many grey hairs have I got now? Is that 的 phone ringing or my ears? Did 的 neighbours hear all that 和 are 的 police on 的 way? Can you lose hearing due to 的 screaming level of a child?

So 的 next time you see what you think is just a bratty kid having a temper tantrum because 他们’re 无法自已,请再看一次。可能是发脾气 full swing or it in fact might be a child not coping in 的 environment 和 试图告诉他/她的父母一些事情。而且请不要’屈尊 look to 的 parents, 他们 are doing 的ir best, 他们’re doing what’s best for 他们的孩子。他们可能正处于称为自闭症的奇妙旅程中。