DEEP DIVE: Olivia Martinez-Hauge on Special Needs Parenting

大家好，欢迎收听《新鲜视角》，本期节目我们直面育儿的种种挑战。

Hello, everyone, and welcome to Fresh Take from What Fresh Hell laughing in the face of motherhood.

我是玛格丽特。

This is Margaret.

我是艾米。

And this is Amy.

今天，我们邀请到了奥利维亚·马丁内斯-豪格。

And today, we're talking to Olivia Martinez-Hauge.

她是一位婚姻与家庭治疗师，专长于帮助那些照顾自闭症谱系或其他神经多样性儿童或成人的家庭、夫妻和个人。

She's a marriage and family therapist specializing in the treatment of families, couples, and individuals who are caregiving for children or adults with neurodiversity.

她还是一名持证作业治疗师，拥有二十多年帮助儿童及其家庭的经验。

She's also a licensed occupational therapist with over two decades of experience helping children and their families.

她自己是三个孩子的妈妈，其中两个有神经多样性，目前担任加州杜阿尔特‘连接与神经多样性中心’的联合主任。

She's the mother of three children, two with neurodiversity, and she is currently co director of the Center for Connection and Neurodiversity in Duarte, California.

欢迎你。

Welcome,

你好。

Hi.

谢谢你们邀请我。

Thank you for having me.

欢迎。

Welcome.

我太兴奋了。

I'm so excited.

我特别乐意跟大家聊聊。

I'm always happy to, like, speak to people

没错。

Well, yes.

今年这一年，疫情期间。

Through this year pandemic.

我知道。

I know.

你有几个孩子？分别多大了？

How many kids do you have and how old?

我孩子挺多的。

I have a lot.

我有三个，他们总是围在我身边。

I have three, and they're always around.

我13岁的女儿叫瑞安，中间那个10岁。

My 13 year old Ryan is my daughter, and my middle is 10.

他叫马特奥。

He's Mateo.

最小的是克鲁兹，今年8岁。

And my youngest is Cruz, and he is eight.

奥利维亚，我们的孩子年龄正好一样。

Olivia, we have children exactly the same age.

真的吗？

So Do we really?

咱们的孩子年龄特别接近。

We're gonna be close.

我孩子分别是12岁、刚满11岁和9岁，其实年龄差距差不多。

I'm 12, just turned 11 and nine, but, like, it's basically the same spread.

真巧。

Jinx.

对啊。

Yeah.

不过我这边是男孩、男孩、女孩。

But I got boy, boy, girl.

除此之外，情况都差不多。

But other than that, we're in the same realm.

是啊。

Yeah.

他们总是吵吵闹闹的，对吧？

And they're always around, aren't they?

最近。

Lately.

是的。

Yeah.

我得说，孩子回学校后，我简直觉得如果不是因为疫情，我根本不会希望他们整天待在家里。

I will say mine being back in school remains like it's almost I would never wish for the pandemic.

咱们得说清楚。

Let's just be very clear.

那真是一场灾难。

It was horrible.

没错。

Right.

我明白对有些人来说情况更糟，但这段经历真的让我更珍惜他们不在家的日子。

I realized it was much more horrible for some, but it has really made me appreciate not having them in the house.

我的孩子都在上学，所以你的孩子 probably 已经放学了。

I mean, my kids are in school, so your kids are probably out of school already.

对吧？

Right?

加利福尼亚。

California.

是的。

Yeah.

我们孩子已经放假了，学校 reopen 之后我们也没送他们回去，主要是因为我们的安排比较紧张。

We're out of school, and we chose not to send them back after, you know, the schools opened up just because of our schedules and stuff.

但这也让我更清楚自己为什么没选择当全职妈妈，为什么当初决定不留在家里带孩子。

But, you know, it did make me appreciate why I am not a stay at home mom, why I chose to not be a stay at home mom.

不过话说回来，那一年还真是挺特别的。

But anyway, it was an interesting year.

我特别喜欢用幽默来面对育儿这件事，因为疫情期间在家带孩子，真的没什么比这更搞笑的了。

I love the laughing in the face of motherhood because nothing was funnier than being at home with the kids during the pandemic.

如果你不笑，那剩下的唯一选择就是崩溃了。

And certainly, if you didn't laugh, there was only other one other option.

哦，简直是一团乱麻，对吧？

Oh, a barrel of monkeys, wasn't it?

我能不能问个有点技术性的问题？

Can I ask you sort of a nerdy question to begin?

我真的是很好奇。

I'm honestly curious.

‘神经多样性’和‘特殊需求’这两个词。

The word neurodiverse versus the word special needs.

我觉得社会上现在越来越倾向于用‘神经多样性’这个词。

I feel like we're moving towards, as a society, using the word neurodiverse more.

它们的意思是一样的吗？

Do they mean the same thing?

这两个词能互换使用吗？

Are they interchangeable?

用‘神经多样性’是不是更合适？

Is neurodiverse preferable?

你能给我解释一下吗？

Can you explain that to me?

是的。

Yeah.

我觉得，随着社会对残障问题越来越了解，也越来越重视亲历者的声音，我们正在朝这个方向发展，也希望未来社会能对残障有更深的理解。

I think as a community and as we begin to grow and know more about disability and really adopting and listening to the person with the lived experience, We're going into this, and hopefully we continue to grow as a society into this more, a better understanding of disabilities.

所以我觉得，这个词能更好地涵盖残障这个概念。

And so I think it's just a word that can help encompass disability.

我不确定有没有答到点上，但我觉得这背后其实是一种趋势——更偏向科学，基于脑科学研究，真正接纳一个人神经多样性的一面。

And I mean, I don't know if I'm answering the question right, but I feel like it is a movement going more towards science and what we know through brain research and really accepting someone's identity as being neurodiverse.

我觉得‘神经多样性’这个词，作为神经多样性孩子的家长，也更侧重于大脑层面，比如学习方式和获取资源的途径。

And neurodiverse, I think, also, as a parent of a neurodiverse child, it is brain centered in terms of, like, learning and access.

对吧？

Correct?

没错。

So Yes.

我觉得‘特殊需求’这个说法是个总称，可能包括腿脚有问题或者视力有障碍的孩子。

It is a distinction, I think, between special needs as an umbrella that could include a kid who has a problem with their leg or a problem with their sight maybe.

对吧？

Right?

而‘神经多样性’则更侧重于那些大脑功能存在差异的孩子。

And neurodiverse is slightly more centered on children who have sort of brain function differences.

对吗？

Correct?

是的。

Yeah.

我觉得我们真正需要关注的是，当孩子表现出一些我们不喜欢的行为，比如强迫行为或类似的问题时，背后其实是有神经学原因的。

And I think that that's where we're really needing to focus too is that a child that is demonstrating some kind of behavior that we don't like or, you know, some sort of compulsion or issue in that area, that there's an actual reason, there is a neurologic reason that that is occurring.

所以我们应该去探究这些行为背后的原因，而不是只看表面表现。

And so we need to look at that rather than just sort of the observable behaviors that we see.

这些行为背后都有其根源。

There's a reason behind that.

背后是有原因的。

There's a why.

你当初踏上这条路，成为专门帮助特殊需求儿童家长的治疗师，是怎样的契机呢？

And you started your journey into this experience and path that you're on now as a therapist for parents of kids with special needs.

是的。

Yes.

后来你自己也有了一个神经多样性孩子。

And then you had a child, a neurodiverse child yourself.

你能跟我们说说这段经历吗？

So can you tell us a little bit about that?

是的。

Yeah.

在生女儿瑞安之前，我当了七年作业治疗师。

So I was an occupational therapist for about seven years before I had my daughter, Ryan.

像所有妈妈一样，我当初对当母亲是有不少期待的。

As all moms are, I think I was going into motherhood with a certain expectation.

我当妈妈之前，脑子里全是各种设想：我会成为什么样的妈妈，女儿会是什么样子，以后带她去上体操课，牵着手在商场里散步等等。

I was entering into being a mom with all these ideas of what kind of mom I'm going to be and what my daughter's going to be like and, you know, the gymnastic classes that I'll take her to and and walking arm and arm down, you know, through the mall.

生下她那一刻，产房里的空气仿佛瞬间被抽空了。

And when I had her, it was an instantaneous, the air was sucked out of the delivery room.

他们把她抱起来给我看，我一看就说：不对劲，出大问题了。

It was one of those moments where they held her up and I said, something is terribly wrong.

就在那一瞬间，我直接穿越到了四十年后，心想：我和丈夫这辈子恐怕再也别想出去旅行了。

And I, in that moment, literally went forty years into the future and was like, my husband and I will never be able to travel.

这孩子永远都不会离开家，我们根本不可能有正常的生活。

We're never you know, this little girl's never gonna leave our home.

那一刻，我整个人都崩溃了。

And, boy, it sent me in a tailspin.

我们在节目里有个词来形容这种心态。

We have a phrase for that on the podcast.

叫作灾难化思维。

It's called catastrophizing.

孩子在学校按了火警警报。

The kid pulled a fire alarm at school.

这意味着我得做好心理准备，以后他可能一直这样，你知道的，

This means I need to prepare for a life of them being, you know

是的。

Yeah.

人生就是个不走正道的主。

Life is a ne'er do well.

没错。

Yeah.

完全偏离了正常轨道。

Completely off the normal path.

完全没错。

Totally.

确实如此。

Totally.

她那时候还不到三十岁呢。

And it was you know, she wasn't 30 old.

我转头对我丈夫说，我们的生活完了。

And I turned to my husband, I'm like, our lives are over.

我就这么把自己推向了抑郁和焦虑的状态。

And we, you know, I just that set myself on a trajectory of depression and anxiety.

好多年里，我一直在应付那种说不上是急性焦虑、却无处不在的低度不安，总觉得有什么事要出问题，永远提心吊胆。

And for a number of years, just dealing with, if not upfront anxiety, just this like low level vibration of anxiety that just covered everything that I was just constantly and always anxious about something.

我花了很久才明白，其实我是在为那些落空的期待哀悼，我经历了真正的悲伤。

And it took me a long time to recognize and to realize that I was basically grieving my expectations, that I went through grief.

你以前在工作中见过其他父母也有这样的情况吗？

And was this something that you had seen in parents you had worked with before?

你当时有没有意识到，自己正在经历父母常见的那种悲伤过程？

Could you recognize as you were going through this, like, oh, this is the grief cycle that a parent might go through?

当然了。

Oh, totally.

那时候我经历了差不多两年的抑郁，后来那种迷茫感才慢慢散去。

When I was so then, like, it was a good two years of depression, and then the fog was sort of lifting.

再后来，我能看清其他父母了，心里就明白：哦，你正处在哀伤的阶段。

And then I was able to, like, see other parents, you know, and go, you're here in the grief cycle.

顺便说一句，有神经多样性孩子的父母，他们的哀伤根本不是什么循环，倒像一整团缠在一起的圣诞彩灯，乱成一团。

And by the way, you know, the grief cycle for parents with neurodiverse kids, it's not a cycle, it's a ball of like, you know, Christmas lights that are all entangled with each other.

但确实，这段经历让我成了更好的治疗师。

But yeah, it made me a better therapist.

也让我成了更好的沟通者。

It made me a better communicator.

我能看出来，别人那种愤怒背后其实是恐惧。

And I was able to recognize in someone else like that anger you're feeling is really fear.

他们真正害怕的不是我，而是对未来的不确定，根本不是冲着我发火。

It's fear for the future that you're really not angry with me, but you're afraid of what the future is going to hold.

还有一种常见的情况是，当治疗师说‘你孩子要结束服务了’，父母突然就激动起来：‘等等，不能就这么结束啊。’

Or, one of the common things that happens is if a therapist is saying, okay, your child is graduating from services or whatever, and the parent sort of erupts in this, you know, wait, no, you can't go.

关键在于，我触动了他们的失落感——我曾是他们社群的一部分，而他们不想失去这样一个属于他们的人。

It's the fact that I'm triggering loss, you know, that there's some level of loss there that I'm part of their community, and they don't want to lose someone that's part of their community.

我觉得当你谈到悲伤时，挺有意思的，因为随着我们思考方式的成熟，我们对‘正常’的理解也变了。

I think when you talk about the grief, it's interesting because I think as we've matured in our kind of thought process about Right.

现在我们越来越明白，人有千百种活法，那些曾经被视作‘偏离常态’的孩子，其实只是走在不同的路上。我们不再觉得目标是把所有人拉回同一个中心标准，这可能是上一代人的想法。

People who operate in any other way, anything that we used to consider the norm, any kid who operates outside of that, that we're understanding more that there's a lot of ways to be and that acceptance and understanding that, like, we aren't here to pull people towards this central norm, which I think maybe our parents' generation thought that was our goal.

完全对。

Totally.

没错。

Yes.

同时，当孩子偏离了你原本设想的‘正常’轨迹时，感到一点失落和悲伤，这很正常，也很自然。

At the same time, it is okay and natural to feel feelings of some grief around any kid pictured within that central norm who is now outside of that, that's a different path.

你确实会经历一种失落，因为你原来想象的那个‘中心位置’，现在不再属于他了。

It's still a grieving process that you're not gonna be quite in that center that you pictured.

对。

Right.

当然。

For sure.

对。

Yeah.

我觉得我们应当尊重每个人的亲身经历，也尊重他们真实的情感。

And I think we need to honor everybody's lived experiences and honor the true feelings.

因为如果否认这一点，就像你刚才说的，随着我逐渐成熟，看待事情的方式也变了，我现在看问题跟十三年前完全不同。

Because if we deny that part, now that I've matured, as you said, and I see things, I definitely see things differently than I did thirteen years ago.

如果我回避说‘我曾感到悲伤’，怕的是自闭症群体说：‘你根本不该难过，一切都没问题啊。’

And if I sort of shy away from saying that I grieved because maybe the neurodiverse population is saying, well, you shouldn't have grieved where everything is okay.

我明白你的意思。

I hear that.

是的。

Yes.

我同意你的观点。

And I agree with you.

我现在要是能有十三年前的那份认知就好了，但那个过程我非得走一遍不可。

I wish that I knew now what I knew thirteen years ago, but I needed to go through that process.

我必须经历那些，才能走到今天，拥有现在的笃定。

I had to go through that process to get to where I am now, where I have certainties.

你懂的吧。

You know?

要是我跳过这些步骤，心里总会觉得不踏实。

If I skipped things and along the way, then I kinda would feel like a little shaky.

但现在，我脚踏实地，对现在的自己完全安心。

But, man, my feet are on the ground, and I'm fully comfortable with where I am now today.

这对刚开始走这条路的人来说，是很好的建议。

And that's good advice for people who are starting this journey.

从一个状态走到另一个状态，确实是个过程。

Like, it is a process to move from one side of that to the other.

没错。

Right.

我觉得把这一点放进人们的经历里很有意义，我总是喜欢把这类话题展开来讲。

And I think that that's a interesting thing to put in people's path, and I always like to widen these discussions.

我们这儿有一群听众呢。

We have an audience.

也许你家里没有自闭症的孩子，但你可能有个孩子，你本来指望他当芭蕾舞演员——毕竟那一直是你的梦想。

Maybe you don't have a neurodiverse child at home, but you have a child who you thought was going to be a ballerina because that was always your dream.

对。

Right.

结果这孩子跳舞特别差。

And they're really bad at dancing.

我们聊的其实就是这种事。

Like, that's what our conversation is about.

奥利维亚当时是什么情况？我们能从中学到什么？

What did it look like for Olivia, and what can we learn from for that?

每个家长都走在同样的路上：当初以为会怎样，结果却变成了另一番模样。

Every parent is on this same path, which is how I thought this was gonna go versus how it's turning out.

对。

Right.

我们该如何在这段旅程中互相支持。

And how we can support each other on that journey.

对。

Right.

当然。

For sure.

没错。

Yeah.

不。

No.

我特别喜欢这一点。

I love that.

我可以说，我光是疯狂查资料、担心、焦虑、难过，就够替一百个妈妈操心了。

I certainly would say, you know, I've done enough obsessively researching, you know, worrying, anxiety, sadness for about a 100 moms.

我替你做过了。

I've done it for you.

我一定要说，你的经历是非常独特的。

And I certainly want to say that your journey is very individualized.

所以我希望，通过谈论它、让它变得正常化，让大家知道你感受到的这些情绪其实很常见，能稍微帮到你一点。

And so, my hope is that by talking about it and normalizing it and saying that this is very what the feelings that you're feeling are very common, that helps them on their journey just a little bit more.

因为我真的没什么可后悔的，因为我选择不去后悔太多事。

Because I really do feel there's very little I regret because I just choose not to regret a lot of things.

但确实有些年份让我后悔，那时我花太多时间纠结，太把自己当成她的治疗师，而不是她的妈妈。

But the things that I do regret are some years where I spent too much time obsessing, too much time actually being her therapist and not her mom.

后来我对待第三个孩子，他有自闭症，我就重新来过。

And I'd like to say that I sort of redid that with my number three child who has autism.

我完全换了种方式对待他，不想再浪费那些时光。

And I took a completely different approach with him so that I don't lose those years.

我们休息一下吧。

Let's take a break.

回来后，我想多听听你这个新方法。

When we come back, I wanna hear more about this new approach.

欢迎来到我家。

Welcome to our home.

不好意思。

Sorry.

家里有点乱。

It's so messy.

我们是新爸妈，正当着你们的面摸索着来。

We are new parents, and we're figuring it out right in front of you.

在《双亲播客》里，我们聊养娃的鸡飞狗跳、夫妻关系的真相、创业经历，还有当下热门话题。

On Two Parents and a Podcast, we talk about the chaos of raising a kid, the reality of our relationship, entrepreneurship, trending topics.

偶尔也会聊聊，为什么我们认为牙医可能是美国最大的骗局。

And occasionally, why we think dentists might be running the biggest scam in America.

因为没错，当了父母后生活全被孩子占满，但你依然是个有自己想法的人，想法可不止限于午睡时间和纸尿裤品牌。

Because, yeah, parenting takes over your life, but you're still a person with thoughts that go way beyond nap schedule and diaper brands.

每周四，我们讲讲故事，聊聊尖锐的观点，顺便可能还会为点小事吵一架。

Every Thursday, it's us telling stories, sharing hot takes, and probably bickering about something.

现在每周一，我们还会请来各种嘉宾，从专业人士到其他夫妻，再到我们社区里的朋友。

And now, every Monday, we bring on guests from specialists to other couples to people in our own community.

请在苹果播客、Spotify、YouTube，或者你常用的任何平台收听我们的节目。

So listen on Apple Podcasts, Spotify, YouTube, or wherever you get your podcast.

也可以在社交媒体上关注我们，搜索‘Two Parents and a Podcast’。

And follow along on social at two parents and a podcast.

养一个神经多样性孩子，不可避免的一个部分，就是那种深深的孤独感。

The other thing that is sort of a perhaps an inescapable part of parenting a neurodivergent kid is the isolation that comes with it.

恐惧让你孤立，觉得没人懂你经历什么，每天应付这些事已经精疲力尽，到了家长会还提不起劲儿聊那些鸡毛蒜皮的事——毕竟，谁想谈这些无聊的东西呢？

The fear isolates you, the feeling nobody else understands what you're going through, the exhaustion, right, of dealing with it every day and then not really wanting to do the small talk at the parents' meeting because why are we talking about these silly, silly things?

可这样一来，你反而更难当好一个父母，因为你白天是治疗师，晚上是全职研究员，却忘了自己还是个完整的人。

And yet that makes you, I suppose, less able to parent your kid when you are, as you said, working as the therapist, as the full time researcher, and not as the full person.

没错。

Right.

这是否也是你探索自我其他方面的一部分，不只是当父母、治疗师、作业治疗师这些角色？

Was that part of your journey to sort of refine the other parts of yourself that weren't the parent, the therapist, the OT, and everything else?

是的。

Yeah.

让我先稍微回溯一下。

And let me just go back for a moment.

从实际安排来看，我觉得这种孤立感很大程度上是现实条件造成的——我根本没法随便去个热闹的公园找朋友，因为别人的家长能让孩子自己玩，可我的孩子不行。

Logistically, I think the isolation, just based on logistics, you know, like, I couldn't just go to a busy park and meet some friends, you know, because my friends would let their children go play, and my child can't just go and play.

你懂的吧？

You know?

我得一直守在旁边。

I would have to be over there.

所以每次我去公园，只能陪着孩子玩，而朋友们却在野餐毯上悠闲地喝着霞多丽。

So, you know, I was literally isolated going out into the playground and playing with my child when my friends were, you know, sipping chardonnay on a picnic blanket.

不过，好吧，我确实也只能这样了。

But yeah, I had to okay.

如果我不是她的治疗师，也不打算花24块零7分去想办法‘修复’她，那我该做什么呢？

Well, if I'm not her therapist and I'm not gonna spend $24.07 figuring out how to quote unquote fix her, then what do I do?

我真的很挣扎，作为妈妈，却要压住脑子里那些声音，它们总在说：这会儿正是个绝佳的治疗时机。

And I really struggled with being that mom and not allowing those voices in my head to say, Well, this is a really good therapeutic moment right here.

我们该教她怎么用勺子和叉子，还该做些负重训练，让她的肩膀更强壮，诸如此类。

We should be teaching her how to use a spoon and a fork, and we should, Oh, we need to do some weight bearing exercises to really get her shoulders you know, strong and whatever.

这需要我不断克制自己，坚定地相信我确信的事：玩耍才是最好的良药，和她一起玩，而不是对她做些什么。

That took a lot of holding myself back and really going to what I knew for certain, which is that play is, you know, the ultimate medicine and playing with her as opposed to her.

我觉得这一点特别有意思，你也提到过，当你有个孩子有特殊需求时，很容易陷入焦虑，所有父母都会这样，比如发育里程碑。

I think an interesting aspect of that, and you talk about this, is when you have a kid who has any kind of, need that you can get very hung up on and this happens for all parents, developmental milestones.

你的孩子达到发育里程碑了吗？

Is your kid hitting the developmental milestones?

哦。

Oh.

他们是不是该在这个年龄坐起来了？大家都这么问。

Are they you know, everybody's like, are they sitting up by age this?

他们到那个年纪会说第一个词了吗？

Are they saying their first words by age that?

这种事我们经常看到，育儿论坛上全是这类讨论，有时候孩子就是达不到这些里程碑。

And this is something that we see people I mean, parenting boards are full of this kind of stuff, and sometimes kids are not hitting those milestones.

我们总是跟家长说，有个秘诀。

And we always tell parents, here's the secret.

你其实左右不了太多结果。

You can't affect a lot of outcomes.

你对结果的掌控没你想象的那么大。

You're not as in charge of outcomes.

我想说的是，特殊需求孩子的家长——希望你们能理解我指的是什么。

But I think was you know, I'm gonna say special needs parents, which I hope people understand.

我讲的是一个很广的范围。

I'm talking about a broad range of things.

我们本来就没多少控制力，可偏偏总觉得能掌控一切。

We don't have that much control anyway, but somehow we think we do.

没错。

Right.

当然了。

For sure.

说起来现在回想起来挺搞笑的，当时可不觉得——怀孕的时候，有些妈妈会注册那些在线育儿服务，天天告诉你宝宝现在有葡萄那么大。

And, you know, a funny story to me now, not then, was when you're pregnant, some moms register for those online baby things that tell you your child's the size of a grapefruit.

现在呢，就变成……反正就是那样了。

And now it's a, know, whatever.

哈密瓜。

Cantaloupe.

没错。

Right.

等孩子生下来，他们又告诉你，宝宝这时候该发出咕咕声了，该能自己坐起来了，诸如此类。

Once they're born, then they send you your child should be cooing, and your child should be sitting up right now, whatever.

我拼命想注销那个账号，结果怎么都删不掉。

I tried to feverishly delete my account and it never deleted.

天哪。

Oh my goodness.

每个月我都会收到一堆提醒，像小刀一样扎人，说孩子这时候该会做这个、那个了。

And so every month I would get these, like, you know, just little spears of daggers of reminders, your child should be doing X, Y, and Z.

可她根本连边都沾不上。

Well, she was not even close to doing any of that stuff.

所以每个月看到邮件，我就在心里冲它竖中指。

So every month, I would just give my the big middle finger to my email.

每次一看到，我就想：天啊。

When I see it there, I'm like, god.

现在回想起来，我都能笑出来了。

So now I can laugh about it.

那时候我真是，

Back then, I was like,

天哪。

oh my god.

我又收到一封邮件。

I got another email.

对于现在正对着邮件竖中指的人，这个过程到底是怎样的？

And what does that process look like for someone who's right now with their middle finger up towards their email?

从那种痛到不行的状态，到你现在这种看透了这一切的境界，中间是怎么走过来的？

Like, what does that process look like getting from this is incredibly painful to where you are, which is through the other side of the looking glass on it?

如果你现在跟那些正收到这类邮件的人说话，你会对他们说什么？

I mean, if you were talking to someone who's getting those emails right now, what would you say to them?

说到底，我现在想的是，我们这个社会总认为‘正常人’才是最好的。

Here's the bottom line, really, and where I kind of sit today, which is we live in a society where we say neurotypical is best.

对。

Right.

好像只有‘正常’才是值得追求的目标。

And normal is the thing to aspire to.

因为我的教育背景和个人经历，我妈妈生来就有严重的听力障碍。

And because of, you know, my education and my own personal experience, my mom was born with profound hearing loss.

所以在我大半辈子的时间里，她都是聋的。

And so she was deaf most of my life.

因此，我对残疾的理解，来自于这些故事——我妈妈必须否认自己是聋人的身份，假装自己跟普通人一样生活。

And, you know, so my understanding of disability came from these stories where, like, my mom needed to deny her identity as a deaf person and try to go through life pretending she was not.

她就这样把这种观念传递给了我，虽然不是故意的，但本质上是在告诉我：残障是不被接受的。

And so that was the message she gave to me, not purposefully, but basically this narrative of it's not okay to be disabled.

有身体缺陷是不对的。

It's not okay to have impairments.

更别说你的孩子要是有什么缺陷了。

And heaven forbid, your child have any impairments.

我真的希望这种事别发生在你身上。

I really hope that doesn't happen to you.

所以我得自己去弄清楚，这些关于残疾的观念到底从哪儿来的，然后一层层拆解，想想看：

And so I had to find out for myself where these messages of disability came from and then unpack them and go, you know what?

这跟我的女儿一点关系都没有。

This has nothing to do with my daughter.

这跟她周围的整个社会环境息息相关。

This has everything to do with the community, you know, outside of her.

有趣的是，在家里的时候，她看起来没那么受限，可一出门，情况就不一样了——这恰恰反映了一种对残障的理解方式。

And she's only and what's interesting about the pandemic is in our home, she looks less disabled than when she goes out into the society, but that is a model of disability.

人们通常把残障看成一种需要被‘修复’或‘正常化’的缺陷，这就是所谓的医疗模式。

You know, there's that medical model of disability that people with disabilities or impairments, they want to be fixed fixed or they want to be normal.

而社会模式的视角则不同：我们该怎样帮她更顺畅地融入这个世界？

And so, you know, looking at the social model of disability is how can she access the world around her?

真正让我开始反思的是，比如看《小猪佩奇》的时候，小猪打了个嗝，她笑得前仰后合。

And, you know, because one of the things that really started to shift my thinking is, you know, watch, like, something like Peppa Pig and the pig burps, and she is in hysterics.

她笑得根本停不下来。

She is belly laugh hysterics.

她每天二十四小时都充满快乐。

She is a joyful person twenty four hours a day.

我突然想到，我为什么要改变这样的她呢？

And I just thought, why would I ever wanna change that?

这正是我想追求的状态——整天笑得前仰后合。

That is something I wanna aspire to, to be belly laughing all day long.

要是能整天笑得停不下来，那该是多精彩的人生啊？

What kinda amazing life would that be that you're just in hysterics all day?

所以回到你刚才的问题，我想对那些对邮件竖中指的人说：先想想你自己对残疾的叙事是什么。

So to go round and around back to your question, what I would say to the people who are giving the double barrel middle fingers to their emails is that start to look at what your narrative of disability is.

我们为什么总想让孩子变得‘正常’、符合神经典型的标准？当他们本身就很开心的时候，我们真正该做的，是支持他们的自我认同，尤其是他们的心理健康。

And why are we aspiring to neurotypical and to normal when our kids are happy who they are and we can what we really should be doing is fostering their identity and hugely their mental health.

对。

Yes.

别否定他们身上的任何一部分。

Not denying parts of them.

我以前从来没想过，我们社会是怎么看的——比如在Facebook上看到一个唐氏综合征的孩子大学毕业了，就觉得这是了不起的成就。

I had never really thought of that before how we as a society you see something on Facebook like this kid with Down syndrome graduated from college, and it's an incredible achievement.

对吧？

Right?

但那个没上完大学的孩子，结果可能更糟。

But that's a better outcome than the kid who didn't graduate from college.

也不一定就是这么回事。

That's not necessarily the case.

我们总是特别庆祝那些有神经多样性或特殊需求、却达成主流社会标准的孩子，但那些没上完大学的孩子的父母，并不比前者更少值得被称赞。

We do sort of celebrate the kids with neurodiversity or special needs who managed to achieve a more mainstream milestone, but those parents aren't more deserving of kudos than the kids who didn't graduate from college.

我以前真没想过，我们总是更愿意听那些孩子最终成功的励志故事。

I just never really thought about that, that we do put a lot of pressure on it to the stories we wanna hear are the kids who made it anyway.

对吧？

Right?

没错。

Right.

确实如此。

Yeah.

我多年来一直为我女儿争取融合教育的机会。

And, you know, I have fought for inclusion for many years for my daughter.

我常听到一些家长说，他们希望孩子能融入普通教育环境，因为想让孩子有典型的同龄人做榜样。

And one of the things I hear parents say who want their kids included in, like, a general education setting is we want neurotypical role models for their child.

我们不如直接说，我们的孩子有权和所有人一样在同一个地方学习。

How about we just start saying because our children have the right to be where everyone else is.

而不是说，我们希望他们更正常、更普通。

And, you know, as opposed to we want them to be more normal or more typical.

我还记得，我看过一部纪录片，叫《残障营》，你们看过吗？

And, you know, I looked at I watched I don't know if you guys have seen the documentary Crip Camp.

是的。

Yeah.

唉。

Ugh.

如果还没看过，现在就去看了吧。

If you haven't seen it, go watch it right now.

看完这集之后再看。

Finish this episode and then watch it.

是的。

Yeah.

所以先把这个播客听完。

So finish this episode first.

拜托，大家清醒点。

Come on, people.

动动脑子。

Use your head.

听完之后，就坐下来把这部纪录片看了。

And then go plop yourself down and watch that documentary.

我当时坐在那儿，看着那些最后的片段和照片，就在想：我们怎么能一边踩着这些人的肩膀，一边还要求他们变得‘更正常’呢？

But, you know, I just thought sitting there watching some of those final scenes and the final pictures, and I thought, why we should not be standing on the backs of these individuals at the same time trying to change them into you need to be more normal.

对吧？

Right?

我们一边歌颂、感谢这些为残障人士权利奋斗的了不起的人，一边又说‘要是你能再正常一点就好了’，这说不过去吧。

So we shouldn't be celebrating and thanking these amazing individuals who fought for the rights of disabled people at the same time saying, you know, but it would be better if you were a little bit more normal or more typical.

所以我在为人父母这件事上，终于到了一个自己实在撑不住的点。

And so I came to a place for myself in parenthood was where I was tired.

我厌倦了整天焦虑。

I was tired of being anxious.

我厌倦了对未来担惊受怕。

I was tired of being fearful of the future.

我受够了这些乱七八糟的情绪。

I was tired of all of that stuff.

我就跟自己说：算了。

And I just said, you know what?

得改了。

Something's gotta change.

于是我只好重新调整自己的想法，做了一番自我探索。

And so I just had to reframe things for myself and do a little self discovery.

这才是真正的言传身教——不是那种‘咱们得教孩子要更正常点’的言传身教。

That's the role modeling, not the role modeling of, like, oh, let's role model kids to, you know, be more normal.

这就像是，我们要示范的是怎样学会去爱——我们常说，如果你用会不会骑自行车来评判一条鱼，那你永远都会对它失望。

It's like, let's role model figuring out how to love you know, we say if you judge the fish by its ability to ride a bicycle, you'll always be disappointed in the fish.

你懂的。

You know?

但你因此错过了它游泳的能力，而游泳其实特别棒，还有鱼能做的其他很多事情。

But, like, you're missing out on swimming, which is pretty awesome and all the things a fish can do.

没错。

Right.

我觉得真正的榜样作用，就是我们该怎么去看见每个人本来的样子，去欣赏他们的真实自我，而不是把他们放进一个他们根本不可能赢的竞赛里，因为那根本不是他们生来该做的事。

And I think that that's the role modeling is how do we figure out how to see people for who they are and celebrate who they are versus putting them in some kind of contest where they're not great because that's not what they were born to do.

没错。

Right.

好了，我们先插个短广告，马上回来。

All right, we're gonna take a quick break and we'll be right back.

我想聊聊，妈妈们该怎么在教育环境和社交场合中，让那些有各种不同特质的孩子更容易被接纳。

I want to talk a little bit about how do moms make it easier in educational settings, in social settings, to be inclusive for kids who may have any kind of difference.

好的。

Okay.

那我们来聊聊

So let's talk to

那些没有自闭症或其他神经多样性孩子的妈妈们，也许你们的朋友有这类孩子。

the moms who don't have neurodiverse kids and who maybe have friends of, you know, friends.

你们最该做的一件事，就是跟孩子谈谈残疾。

I think the number one thing that you should be doing is talking to your kids about disability.

这不是个忌讳的词，也不该让人觉得羞耻，或者偷偷摸摸地议论。

And it's not a taboo word, and it's not something to be shamed about or, you know, whispering about.

如果我们跟孩子讨论种族、偏见和歧视，那也必须同样讨论残疾。

If we're talking to our kids about race and bias and prejudice, we've got to be talking about disability as well.

比如朋友玛莎的孩子有自闭症。

And how, you know, friend Martha's kid has autism.

我注意到，当他和一群孩子在一起时，总会不停地跳来跳去。

And, you know, I notice that when he's around a group of kids, he jumps up and down.

你觉得这意味着什么？

What do you think that means?

你觉得他当时是什么感受？

And what do you think he's feeling?

要真正和孩子聊聊，帮他们理解残疾孩子不是可怕、不是怪异，而是要明白这些行为背后的原因和差异。

And really having a legitimate conversation to help other kids not be afraid of kids with disabilities, not think they're weird or whatever, but really understanding where that's coming from and differences.

你可能会拍手，约翰尼可能会跳来跳去。

And, you know, you might clap your hands, Johnny might jump up and down.

这两种行为都没问题。

And those two things are great.

完全正常。

They're perfect.

我还想对那些有神经多样性孩子朋友的家长说，别停止邀请他们参加活动。

And the other thing I would say to parents of friends with children with neurodiversity is don't stop inviting them to places.

让家长自己决定怎么带约翰尼参加派对，是去还是不去，你别因为觉得太麻烦就干脆不邀请了。

Let the parents figure out how to manage, you know, getting Johnny to a party or let the parents say yes or no, but don't stop inviting because you might think that it's too hard for them or whatever.

你写过一点，说有特殊需求或神经多样性的孩子，通常有一整个团队在支持他们。

You made a point in your writing that a kid with special needs or neurodiversity often has an entire team of people supporting them.

哦，确实有。

Oh, There's

这个治疗师、那个治疗师，还有教室里的助教，诸如此类。

this kind of therapist, that kind of therapist, the aide in the classroom, whatever.

但孩子的父母却没有这样的支持团队。

But the parent does not have that support team.

这真的让我很震惊。

And that really blew my mind.

我以前从来没想过这一点。

I never really thought about that.

也许我们这些家长，应该更多关注如何支持那些有神经多样性孩子的朋友，从大到小，成为他们支持系统的一部分。

And maybe some of us parents who I want to make sure to focus on how we can support our friends who have, neurodiverse kids, that we can make sure we are part of that support system in ways that are large and small.

是的。

Yeah.

是的。

Yeah.

我觉得其实就是主动联系一下，发个消息就行。

And I think it's just to reach, you know, reach out and, you know, it's a text message.

你最近怎么样？

How are you doing?

我能怎么帮你？

How can I support you?

因为对我来说，如果有人直接说‘我来帮你带孩子吧’，我反而受不了。

Because, you know, at least it doesn't work for me to for someone to say, hey, let me come over and watch your kids.

天哪，那我真得慌了。

That would be, oh my gosh.

我会特别紧张。

I would be stressed out.

我还得给你写六页纸的说明，告诉你什么时候该做什么。

I would have to leave you six pages of explanation of, you know, when this happens, do this.