如何抚养有“特殊需要”的孩子

如何抚养有“特殊需要”的孩子

米雪

 

人们常说每一个孩子都很特别。但是当我们的长子大卫２８年前出生的时候，他的特别却表现在另一个方面，他患有先天性孤独症，　是一个智障儿。

我们常常认为我们可以很好地规划我们的家庭。比如说什么时候怀孕，什么时候让孩子出生，以及是生男孩还是生女孩。也许在不久的将来，我们甚至还可能可以选择我们孩子的脾气秉性和相貌特征。但是，每隔一定时间，一个特别的（或有残疾的）孩子就会通过自然的过程“被安排”降生在我们身边的某个家庭中。今天，科学可以帮助我们在小孩出生之前检测到胎儿畸形的概率，但是这充其量只是给父母提供了一个堕胎的选择。　父母是否选择堕胎则很大程度上取决于他们对这个孩子降生的原因的看法，这是个事故吗？还是个随机事件？或者是坏运气？还是上帝的安排呢？

我和我的先生，李，　在结婚五年以后才要孩子，为的是等李服完兵役，并念完商学院。我那时则在旧金山的一所高中作教师。我们要孩子的时机在当时显得特别的完美。在经过了一段风平浪静的孕期后，　我们的长子大卫出生了。在寄给亲朋好友的大卫的出生告示上我写下了这样的一段话：“各样美善的恩赐和各样全备的赏赐都是从上头来的，从众光之父那里降下来的；在他并没有改变，也没有转动的影儿”（雅各书第一章第１７节）。

当时我们并不知道大卫有病。但是当大卫刚满一岁的时候，他变得易发脾气和不可捉摸。他不再同我们进行眼光的交流，而且也不再用过去的方式玩他的玩具。并且他的语言能力也开始倒退，过去学会的词句都不会说了。当我们费尽周折终于在他大约两岁时查出他患有先天性孤独症时，对我们来说是一种解脱， 因为我们至少终于有了一个名词来解释我们的孩子到底是出了什么事。

 

苦苦寻找答案

大卫得了什么病？谁能帮助我们？

当大卫还小的时候，儿童先天性孤独症还不容易被确诊，　我们“在好些医生手里受了许多的苦”（马可福音第５章第２６节）。像大卫这样的孩子被诊断为“被惯坏了”，或“情感不稳定，或“先天愚型”。有时医生的诊断书上还会添上一句：“需要收容入院”。五花八门的诊断只是不断加剧我们的恐惧与不安，直到有一天我们终于决定要运用自己的知识和判断力来对待大卫的病，并在实践中检验它们的正确性。我至今仍然记得李曾说过的一句话“这个大夫可能有个心理学的博士学位，但我们却拥有大卫学的博士学位。”

当大卫五岁的时候，又有一位大夫对我们说大卫应该被收容住院， 因为我们不能像医院那样为他提供始终一至的专业的的训练。但是我们还是决定不放弃大卫，因为虽然我们的能力有限，但是我们至少可以给予他爱，其它的困难我们则要依靠上帝来帮助我们克服。当我们拒绝了一个提供大卫全部住院费用的赞助后，医生们对我们的决定感到沮丧，并指责我们在做一件自私的事情。 尽管我们面对了这么多的压力，我们在对上帝的全心信赖中找到了平安。

刚开始的时候，我四处查阅有关孤独症的书籍，直弄得自己头晕眼花。有一天晚上，我因为担忧大卫的将来以及他的寿命，整夜不能入眠。翻开圣经，我读到了这样一段尤令我宽慰的话，“我儿，还有一层，你当受劝戒：著书多，没有穷尽；读书多，身体疲倦”（传道书第12章第12节）。我决心不再去阅读日益增多的有关孤独症的参考书， 而是用一种平衡的心态和方式来处理我们家所面临的问题。我决心要更多的聆听上帝对我的指引，而不仅仅是去依赖那些参考书。

 

谁应该负责任: 是撒但还是上帝？

只有弄清了问题的根由，才有可能找到治病的办法。这意味着我们要提出一系列的问题：这件事是谁使它发生的？是谁在掌控呢？是撒旦使我的孩子得病，还是上帝应该负责任呢？对这些问题的回答很关键，因为它们会决定我们寻找对策时用的方法。

如果撒旦是问题的根由，那么我们一定要想尽一切方法来同撒旦作战， 同时认识到我们的儿子是在恶魔的掌控之下。这种想法至多可以使我们保持警觉，但是它也会令我们对我们自己的孩子产生一种恐惧感。这种思想销弱上帝的地位和他处理撒旦的阴谋诡计的能力。我们可能会竭尽我们所有的时间和精力来想办法对抗撒旦。但是最糟糕的是我们最后会发现我们自始至终都是在同上帝做对抗，而不是在对抗撒旦。当约伯在经受各种苦难的煎熬时，他始终都将自己受苦的最终原由归于上帝。（“他必杀我，我还是指望与他，我在他面前还要辩明我所行的”约伯记第13章第15节）–尽管圣经上写苦难是直接经由撒旦之手而来的。我们一旦认清上帝是最终的和完全的掌控者，我们就能开始从我们人生所经历的苦难中学习变得成熟起来。

虽然上帝不是罪恶的源头，但是他却是它们的主宰，并且上帝利用它们来实现对我们人类的救赎。 我们生活在一个堕落了的世界中，因为我们的祖先所犯的罪，我们生活在一个诅咒之下。疾病与死亡随之而来。当耶稣来到这个世界上时，这个对人类的诅咒开始被打破。但是，诅咒的完全被打破必须要等到来生（启示录第22章第3节）。 同时耶稣也帮助我们在此生中开始逐渐扭转这个诅咒的“魔力”，当我们“凡所行的，都不要发怨言，起争论，使你们无可指摘，诚实无伪，在这弯曲悖谬的世代，作神无瑕庇的儿女。你们显在这世代中，好像明光照耀”腓立比书第2章第14-15节）。

 

这是谁的错？

作为一个基督徒，另一层的问题开始困扰我：“上帝为什么要对我的儿子这样做呢？为什么会是我的家庭？我的丈夫和我“？我绞尽脑汁地想， 想从自己身上找出原因，是不是我在怀孕期间做错了什么才导致了这个不幸。因为大卫是我们的第一个孩子，我在怀孕期间格外的小心， 所以我可以很肯定原因不是出在我的身上。

但是当一位牧师询问我和我的丈夫是不是有没有坦白的“罪”时，我们对儿子生病原因的查考从身体层面转到了精神层面。 刚开始我们有种被侮辱的感觉，因为这好像是在说我们俩有没有坦白的“罪行”从而导致了儿子的得病。但是由于我们倆迫切地想找到儿子的病因以便更正，我们开始做自我检省，以备万一。如果真是那么简单就能把儿子的病治好，无论是向上帝坦白我们的“罪”也好，还是发誓也好，或是与上帝达成其他任何协议也罢，我们甘心情愿做任何事情。我们逐一回想生命历程中的每一件事情，就象计算机杀毒软件检查计算机中的每一条程序一样，我们试图向上帝坦白我们记得起来的所有错事。但是就在这样做的过程中，我们意识到如果上帝想要为我们所做过的错事惩处我们的话，他有充分的理由对我们发怒，因为我们在认识他以前犯过的罪真是太多了。难道这就是原因所在吗？

如果上帝想要根据我的过犯来处置我的话，那么我理应当受到更严厉的处罚。东方的一些宗教认为神是讲求因缘和因果报应的， 今世或是前生所犯下的罪行都会转化为今生的灾难和不幸。基督教与这些宗教的出发点完全不同。上帝对待他的孩子们的方式是基于主耶稣基督的恩典。 作为基督徒，我们并没有得到我们应得的抱应，是耶稣为我们尝了罪。他然后还赐给了我们一件我们不配得到的东西，那就是宽恕。这宽恕使得我们能够重新与上帝修好并建立起联系。

当我读到约翰福音第九章关于耶稣的门徒就一位盲人的处境询问耶稣的故事时，我的心被紧紧地抓住了。门徒们问主耶稣说，“这人生来是瞎眼的，是谁犯了罪？是这人呢？是他父母呢？”耶稣回答说，“也不是这人犯了罪，也不是他的父母犯了罪，是要在他身上显出神的作为来。”这段话给了我巨大的解脱， 因为它使我懂得了上帝不是要根据我的过犯来惩处我，而是自有他的安排。我感到我过去所背负的沉重的负罪感终于离我而去， 从那以后，我全心倚靠上帝期待他在我的儿子的身上并且通过我的儿子彰显他的作为。

 

是寻问事情为什么发生? 还是寻问谁是事情的主宰?

我曾经冥思苦想大卫为什么会得孤独症, 有一天我翻然醒悟自己的这种想法根本就是错误的。为什么我想要上帝告诉我为什么呢？　难道知道原因就会使我满意吗？ 还是只会让我想对上帝的做法指手画脚呢？难道我的有限的心智真能理解上帝的工作吗？尽管约伯问过上帝，“为什么（要使我承受苦痛）？”，上帝没有回答他，而是反问他说，“到底谁是主宰?”“谁用无知的言语，使我的旨意暗昧不明？你要如勇士束腰。我问你，你可以暗示我。我立大地根基的时候，你在哪里呢？你若有聪明只管说吧！你若晓得就说，是谁定地的尺度？是谁把准绳拉在其上？地的根基安置在何处？地的角石是谁安放的？那时晨星一同歌唱，神的众子也都欢呼。”（约伯记第38章第2－7节）

在我们的此生中，我们可能对苦痛为什么会发生找不到答案。但是我们可以知道苦痛的主宰。谁是主宰? 是上帝。“为这缘故，我也受这些苦难；然而我不以为耻，因为我知道我所信的是谁，也深信他能保全我所交付他的，直到那日”（提摩太后书第一章第12节）。寻问苦痛为什么会发生并不能教给我们正确的处世态度，只有寻问谁是主宰才能给予我们正确的处世态度。

上帝的绝对统治权成为我信仰的坚固基石。尽管我们的景况很长时间没有改观，我牢牢地记着以下这段经节：“我们晓得万事都互相效力，叫爱神的人得益处，就是按他旨意被召的人”（罗马书第8章第28节）。上帝是世间万事万物的主宰。他有完全的控制权，不会被系统中的某个失误所影响，也不会被撒旦所控制。

我们的每件所得都是由上帝（我们慈爱的天父）所赐。我们的孩子大卫不是上帝不小心出的事故或是差错，也不是我个人在怀孕期间的失误所至。上帝有他的用心，我们并不了解。上帝知道事物的开端与结尾。清楚上帝自有他的更宏大的目标，并且是为叫人得益处，对我内心来说是很大的解脱。这也是为什么罗马书第8章第28节的开头几个字特别的重要，“我们晓得”。如果我们不“晓得”， 那么我们可能只能自认“倒霉”， 并且在余生中拼命地想办法要“想开一点”， 或者是“与不幸的命运抗争”。（正因为我晓得），我不认为我的孩子是一个负担或是惩罚， 而视他为上帝赐给我的宝贵的礼物。 当我们面临困境的时候， 上帝告诉我们，“凡劳苦担重担的人，可以到我这里来，我就使你们得安息。我心里柔和谦卑，你们当负我的轭，学我的样式，这样，你们心里就必得享安息。因为我的轭是容易的，我的担子是轻省的”（马太福音第11章第28-30节）。上帝主宰着世间万物，他完全了解你的孩子和你的孩子的每一份需要。 “我在暗中受造，在地的深处被联络；那时，我的形体并不向你隐藏。我未成形的体质，你的眼早已看见了；你所定的日子，我尚未度一日你都写在你的册上了”（诗篇第139章第15-16节）。上帝并且也完全了解你和你的需要，以及你所受的痛苦。你的孩子是上帝的恩典所赐。 你就好象是荒野中的以色列人一样，你每天的采集刚好够你一天的用度，一点也不会多。我们也由此更能体会到上帝的守信和仁慈以及我们自己的需要和对他的深深依赖。作为父母， 我们有这样一个特权， 那就是可以经常来到上帝面前。“因我们的大祭司并非不能体恤我们的软弱；他也曾凡事受过试探，与我们一样，只是他没有犯罪。所以我们只管坦然无惧地来到施恩的宝座前，为要得怜恤，蒙恩惠，作随时的帮助”（希伯来书第4章第15-16节）。上帝不是为了要毁掉你和你全家所有人的幸福而把这个孩子赐给你，因为上帝曾应允过“万事都为叫人得益处”。

 

我怎样才能 “修好”它？

在我的观察中，通常父亲都很难接受子女有残障这个事实，因为他们习惯于能够自己动手修理东西。 当他们发现某样东西他们修不了时，他们通常都将自己置身事外，把日常生活中的很多压力留给母亲来应对。这种做法通常会使因为孩子本来就紧张的夫妻关系更加恶化。 我的先生，李， 对我很支持， 但是他当时正处在事业的起步时期。对他而言，将自己掩埋在工作之中，远比对付大卫和我们家的情况来得更容易。作为一个呆在家里的全职母亲，当我感觉到李可能有意无意中疏远了大卫时，我便努力不让李介入抚养大卫时需要做的那些不愉快的工作。我想让李和大卫在一起时能够享受一些快乐时光，所以我不叫他做那些繁重的工作。 他也帮助我给大卫换尿布，但是我没有期望他象我一样每天要对大卫进行大量的训练工作。

李希望大卫能够好转的心意极其恳切。有一天，他对上帝提出了一个条件，他说如果上帝肯治愈大卫的病的话，那么我们两个人就去做传教士。 但是，大卫的病并没有好，我们也意识到不管上帝会不会在今生医治好大卫，我们都会成为传教士。

探究事情为什么会发生或者探究究竟是谁的过错是我们在遭遇人生的苦难试炼时通常的反应。同上帝讲条件是我们的另一个常有的反应。我们需要意识到我们常常有想操纵上帝的倾向，并且要时时提醒自己不要让我们的孩子成为我们听从上帝召唤的绊脚石。

 

他能被治愈吗？

哪一个父母不热切地祈求他们的孩子被治愈？耶酥鼓励基督徒们求他们心里所想要的东西。“你们奉我的名无论求什么，我必成就，叫父因子得荣耀。你们若奉我的名求什么，我必成就”（约翰福音第14章13-14节）。我当然希冀上帝医治大卫来彰显他的作为。很显然如果上帝治好大卫的病，象他治好约翰福音第九章里的盲人那样，那将是一个多么好的彰显他的作为的机会呀。若是那样，我们夫妻俩人将会高高兴兴地倾尽我们的余生来传播上帝的英名和作为。

祈求和索要有时只有一线之隔。我们必须象耶酥那样，将自己的需求服从于上帝的意志：“父啊！你若愿意，就把这杯撤去；然而不要成就我的意思，只要成就你的意思”（路加福音第22章42节）。我时常需要提醒我自己我活着是要服从上帝，而不是反过来。尽管上帝有时候救赎我们脱离苦难，更多的时候他通过苦难来实现对我们的救赎。

对我们来说最困难的莫过于同我们自己的弱点搏斗了。我们接触到花样百出的各种“治疗方法”，从饮食疗法到信仰疗法，从算命先生的预言，甚至到招魂术。每一位关心我们的人都会给我们出谋画策。作为基督徒，我们自己到底应该做到哪一步，哪一步又应该等待上帝的作为呢？上帝会不会是通过这些不同的方法来帮助我们在信仰上更趋成熟呢？我们怎样才能分辨得清呢？父母们需要慢慢发现哪些方法值得一试，哪些方法不值得一试？哪些方法合理，哪些方法不合理？哪些方法可行，哪些方法不可行？以及怎样做才是对全家人最好的？

 

故事的演变

接受现实

我一共经历了至少长达十年的时间才终于认识到孤独症是不可能被治愈的。所有所谓新的疗法都只是在试图增加使大卫情况好转的可能性。事实是人类至今还没有治愈孤独症的方法。我真希望在我养育大卫的初期就有人将这些告诉我。父母们必须当心我们自身的弱点，那就是我们总想“努力”得到超出上帝给我们的安排的东西。虽然在全能的上帝万事都可以成就，但是我们不能总生活在这样的“不安分”之中，我们很容易开始假设，不肯积极地面对现实，甚至陷入抑郁。

 

利用激励机制激发改变

在大卫年纪还小的那几年中，我满怀期望地找寻他会痊愈的各种征兆。同时我也得努力想法子对付他越来越令人烦恼的行为问题。因为我所期盼的痊愈并没有很快来临，我开始将当前的迫切需求同实用主义结合起来：我现在怎样做才能改善大卫的情况？

同大卫的行为问题做斗争改变了我的一生。上帝使用了两个催化剂帮助我。第一个催化剂是照顾大卫对我的挑战。我每一天都逃避不了要对付大卫的各种行为问题。第二个催化剂是州政府的特别教育服务机构向我们伸出的援手。当那位特别教育员老师第一次来到我们家时，我满心认为她会自己动手来训练大卫。所以当她说出她是来教我如何自己训练大卫时，我着实吃了一惊。她所要使用是一种叫做行为修正法的方法。

当我听她描述如何使用激励机制来训练培养孩子的好的行为时，我充满了怀疑，因为这些方法听起来好象是在贿赂和操纵孩子。它们显得机械，非人性化和缺乏爱。我确实认为行为学者们在设计这些方法时是考虑了这些逻辑的。但是那位特别教育员对我的帮助实在极大，因为她所教我的有一件最重要的事实是对的，那就是孩子行为的后果很重要。她帮助我重新认识了我过去所给予大卫的种种“奖励”以及所带来的后果。上帝通过这位老师改变了我过去对“爱”所下的错误的定义，并且强迫我学会如何来现实地爱大卫。我过去认为我应该无条件地接纳大卫，不管他有什么样的令人气恼的行为。过去每当大卫发脾气尖叫时，我都会立即跑过去用拥抱来安抚他。但是，拥抱非但没有帮助他化解怒气，反而让他的脾气愈演愈烈。特别教育员告诉我，这种时候我应该暂时忍住不抱大卫，要等到他不再尖叫的时候再去抱他。这样一来就能帮助他明白尖叫的行为不好，用它不能够达到自己的目的。这种方法说起来容易做起来难，尤其母性的本能让人很难做到。我是因为我自己的各种办法都毫不奏效，已经走投无路了才同意试试这位特别教育员的方法的。最初大卫平均每天要发五次脾气，每次大约要二十分钟才能平息。经过几个月，在我学习正确地“爱他”（奖励他的好行为，而不奖励他的不好的行为）以后，他发脾气的坏毛病彻底改掉了。我们接着开始向大卫的其它需要改变的坏行为发起进攻。如加宽他的食谱（他发病后很快就只肯吃碳水化合物这一种食物了），与我们进行眼光的对视，愿意让我离开他的视线，自己穿衣服等等，他并且最终学会了自己上厕所。时至今天，由于大卫养成了良好的行为习惯，我们夫妇的各种社交活动大多都能带他一同参加。

我最初曾对使用激励机制心存保留，这样的态度被打消后，继而代之的是我对上帝如何也在运用激励机制来激发我们也获得了更新的认识。运用激励机制本身是没有错的。只是有时可能我们用做激励的东西是错的。并且激励不应当被当成是一种机械的技术手段来用于控制另一个弱小的个体。恰恰相反，激励应当在爱的前提和背景下被运用。

我们人类自被造以来就是受激励机制激发的。上帝给我们的命令中通常都带有这样的内容，那就是遵守他的话的人会受到奖励，违背的会受到惩处。上帝使用将来的赞赏（“干得好，忠诚的好仆人”）和赏赐（希伯来书，第11章第6节），或者害怕惩罚和丧失赏赐（哥林多后书，第5章第10节和哥林多前书，第3章第15节）作为激励来激励我们。这些都是上帝基于他同我们的关系对我们个人做出的赐福或是警告。

刚开始的时候，我们用饼干来激励大卫因为他很爱吃饼干。但是我们最终转而使用另一些更为恰当的基于我们同他的关系的奖励方式，如我们对他的赞扬和夸奖。我们这个社会也正在有效地运用着类似的一套激励机制。学生学习受到高分的激励，但是我们希望学生最终能够为了学习本身而学。虽然单纯为了分数而学习不对，但是我们不得不承认要是

没有了分数我们学习的努力程度会打折扣。人们上班是为了要挣工资，这个激励系统本来没有错，但是如果挣钱变得比什么都重要，甚至超过了我们的伦理道德或家庭，那么这个激励就有可能成为绊脚石。所以运用激励机制来影响行为，最关键的是要基于我们同上帝的关系或者我们同他人的关系，这一出发点至关重要。

我们对于激励的选择反映了我们的价值观。并且我们认为激励应该和能够达到哪些效果也反映了我们的价值观。我们是期望使用机械的，程序化的或者是令人恐惧的激励手段来达到改变行为的效果（绝对的服从？），还是希望通过恰当的内心关系的反馈来达到改变行为的效果？

我曾经对“无条件地接纳”有错误的概念，圣经在描述上帝如何对待我们人类的时候从来没有出现过这个概念。虽然我们得救是上帝的恩典，或者是我们白白得来的恩赐（unmerited favor），但是得救要靠我们的信做条件（以弗所书，第2章第8-9节）。尽管上帝的慈爱可以领引我们悔改（罗马书，第2章第4节），但是他也“管教我们，是要我们得益处，使我们在他的圣洁上有分”（希伯来书，第12章6-11节）。母亲们容易错误地以为她们对孩子的无私的爱（上帝般的爱）应该表现在无条件地接纳孩子的任何行为，并且她们以为她们的这种接纳能够最终让孩子悔改。父母们可以无条件地爱孩子，但是必须“有条件”地管教他们。我们有限的人给予孩子“无条件地接纳”的结果只能是让孩子有了为所欲为的自由。它们是不具有同上帝的恩典相同的效能的。只有上帝才能够给予我们人恩典，或是我们不配得的恩赐（unmerited favor），因为他是那位全能和全知的主。

 

“拼图少了一块！“拼图少了一块！”

孤独症患者有许多仪式性的习惯，比如反复地重复某一动作和语句。这种做法给予他们安全感，让他们感觉到他们的世界是可控和可预测的，是完美的。当他们处在这一套仪式性的行为之中时，他们感觉很舒服。当什么事情搅乱了他们的这种程式时，他们就会情绪发作。

尽管大卫不太能数数，他却能一眼看出自己的一百片拼图中少了一片。这时候大卫开始不停地狂叫，而我们全家人就会象疯了一样的翻箱倒柜为他找那一片拼图。为了帮助他用语言来表述自己的问题而不是尖叫，我教会他说：“拼图少了一块！“拼图少了一块！”

经过一段时间以后，我们意识到让大卫觉得他的不全的拼图总能被找齐，或总是满足他希望世界符合他自己的秩序的要求，并不是对他最好的做法。我们也意识到当大卫遇到不顺心时，他必须学会更好地同我们交流。让他意识到他需要我们帮助他，将自己锁在自己仪式性的行为之中并不能帮助他得到他所想要的。我们做好了最困难的准备来教大卫这一课。

当大卫开始尖叫“拼图少了一块”时，我们还是象往常一样先帮他四处寻找。但是如果我们不能很快地找到他丢失的拼图，我们对他说：“大卫，你说得对，拼图少了一块，我们还没有找到它，但是这样没事。”他不相信地看着我们，接着坚持：“拼图少了一块！拼图少了一块！”我们继续冷静地回答他，“是的，有一片拼图不见了，但是，这样没事的。”由于我们的冷静和坚持的态度，大卫最终接受了我们的这种方式，不再尖叫。

这件事成为大卫的一个转折点，他开始理解并非凡事都会如他的意，但这并没有什么大不了。自从有了这种理解以后，大卫在其它很多方面也都变得更能通融了。我们因此几乎所到之处都能带着他，因为他已经能够承受各种不同的变化，这在孤独症患者来说是非常不简单的。我们决定教大卫学会适应我们这个“不完美”的世界，而不是试图保卫大卫个人世界的完美，这是我们全家一个至关重要的决定。

通过大卫的事情，也使我反思到自己的一些类似问题（类似孤独症的病态），我也总是希望所有的事情都能按自己的想法来。我希望我能把每一件事情都安排得天衣无缝。如果事情不如意，或“少了一块拼图”，我就会发作。但是上帝并不让我们万事都能顺意，因为如果那样的话，我们就不会转向他了。我们会变得满足于自己控制自己的生活，活在自给自足的世界里。当生活中“少了一块拼图”的事情发生时，正是提醒我们我们并不是有能力掌控所有发生的事情，我们而是应该懂得转向上帝，从而让他来帮助我们。

 

“不管怎样。不管怎样”

当大卫刚开始学说话的时候，他总是重复所听到的句子。如果我们对他说：“大卫，你好吗？”他也会回答：“大卫，你好吗？”这一习惯很不容易被纠正。但是，就在我们同这个毛病做斗争时，我们不经意中“听到了”上帝对我们的启示。

孤独症儿童对于父母亲的关爱没有太多的反映，我们开始逐渐感觉到要坚持不懈地对一个没有什么反映的孩子示爱有多么的困难。所以，为了同我们潜意识里想疏远大卫的心理做对抗，我们决定每晚在帮大卫上床睡觉时都对他说：“大卫，我们爱你，不管怎样。”大卫就重复着我们的话说：“不管怎样，不管怎样，不管怎样。”这句话强烈地提醒了我们我们对大卫的承诺和责任。我们也开始体会到我们这个世界对于上帝给予我们的永不止息的爱是多么的迟钝，如同患有孤独症一般。但是，因为耶酥，上帝爱我们“不管怎样，不管怎样，不管怎样。”

 

上帝的安排

大卫是我们三个孩子中的长子，每个孩子相差仅二十个月，为了不让大卫的弟弟妹妹感到难堪和低人一等，我们决定除非他们问起，我们不会主动提及大卫有病之事。当克里丝蒂和迈克大约四岁和两岁时，有一天，俩人跑过来问我说：“大卫比我们大，可他不会说话，他有什么病吗？”我一直担心他们问这个问题，我求主帮助我能使孩子们明白大卫是上帝给我们的宝贵的礼物。我告诉他们当上帝在安排天堂中的家庭时，他知道大卫需要很多很多特别的爱，所以他要给大卫找到一个能给他这么多关爱的家庭。“上帝往下看，看到了史密斯夫妇和他们的两个孩子，小苏西和小强尼。他们有特别可爱的玩具。”然后上帝想，“我是不是该把大卫安排到他们家呢？” 克里丝蒂和迈克使劲地摇着他们的头很担心的样子。“那么，小琼斯家怎么样呢？他们的爸爸妈妈都是很好的人，而且很会玩？”“不行，不行！”，他们坚持摇头不同意。“然后呢，上帝再往下看，看到了你们的爸爸和妈妈，还有小克里丝蒂和小迈克，他说，‘我该不该把大卫送给他们呢？他们能给大卫所需要的特别的爱吗？’”“好，好，好！”他们俩一起又跳又叫，就象他们刚中了百万美元的大奖一样。

他们后来又问我大卫将来能不能说话，我向他们保证如果大卫在现实中不会说话的话，他在天国里是会说话的。两个孩子于是开始猜想大卫到了那时会说些什么。我提示说那时候大卫可能会告诉我们他对大家对他所做的善良举动是多么的感激。现在的大卫仅仅是在天国里的大卫的一个影子。我们每个人都是那样。有时候当我们想到他人的时候想一想我们同在天国时的样子会很有帮助。

这以后，克里丝蒂和迈克开始逐渐清楚大卫的残疾和他和别的小朋友的不同之处。克里丝蒂和迈克也因此很小就懂得这个世界是不公平的。我们家就是最明显的例子—每一个孩子的智力和体力都不同。所以，公平不是给每个人同样多的东西，而是给予每个人他所需要的东西。

我们尽可能地让大卫参加我们所有的家庭活动。当孩子们还小的时候，我们让三个孩子一起活动。后来当他们大一些以后，我鼓励克里丝蒂和迈克带大卫参加他们的青少年聚会，聚会中的小伙伴们对大卫都很好。但是，当孩子们进入青春期后，我不希望他们有害怕受大卫连累的担忧。所以我在问他们要不要带大卫一同去参加他们的活动时，我更为小心，我希望他们自己能够真心地喜欢有大卫的陪伴。理解孩子的不同年龄阶段的特点非常重要。我持有一个长远的观点；我不希望听到我的孩子们将来告诉我：“我的童年或者我的家庭因为我的得孤独症的哥哥而被破坏了。”

当大卫长到我不能再带他进女卫生间的时候，我招募迈克领他去上男卫生间。这是让迈克对大卫担负责任的一个办法，尽管这事不容易，但迈克很少埋怨过。事实上，当他们俩都还小的时候，迈克经常为了保护哥哥不受戏弄而不惜与比他大和强壮的孩子发生争斗。

克里丝蒂和迈克在他们的大学入学申请书中都写到了大卫。克里丝蒂写到大卫如何帮助她认清自己有苛求完美的倾向。迈克写到他小时候与大卫同住一间卧式，他对大卫在他一个人害怕时总是愿意在半夜里陪他上洗手间是多么的感激。他写到：“有几个哥哥愿意为自己的弟弟这样做呢？”

 

带特别儿童一起为上帝做见证

大卫九岁的时候，我们全家打算搬到香港去做带职服侍。但是我们的大夫和其他专业人士都奉劝我们不要离开美国，因为这里有对孤独症儿童最好的教育和支持体系。他们警告我们说我们如果搬走，将会严重地妨害大卫获得最大限度的成长和发展的机会。但是，我们认为上帝召唤我们侍奉他，他不会给我们一个会妨害我们响应他的召唤的孩子。我们必须避免自己自动地以为有残疾的孩子会让我们无法为上帝作事工。我们决心信靠上帝来帮助我们满足大卫的各样需求。因为不管我们住在哪里，是香港还是美国，我们都要信靠上帝。经常牢记上帝他不仅照管我的有特殊需要的孩子，而且我自己也是在他的手中，会非常有帮助。他让“万事互相较力，为要爱神的（每一个）人得益处”。

当一个家庭中有一个孩子有残疾时，全家有时可能会过分地去满足残疾儿童的需求而以至于以他来定义整个家和这个家庭的所作所为。这种过分集中的注意力无论对哪种孩子都无益，无论是对残疾的孩子还是健康的孩子。事实上，任何孩子都可能被宠坏，无论是残疾的孩子还是健康的孩子。我们应该训练他们，教会他们懂得他们不是宇宙的中心。他们也是带有罪性的，做事需要纪律和限度。虽然我们尽我们的最大力量满足大卫在他的世界里的需求，我们也尽量让他容入到我们的家庭生活和我们为上帝做事工的工作中来

 

有特殊需要的孩子的精神需求

最近有人问我说：“大卫是基督徒吗？”答案是什么呢？大卫不具备理解上帝对我们的救赎的智力，他不懂如何来做忏悔祷告，或是如何表示接受耶酥来做他的救主。有些人会认为他的智力还没有达到能为自己的行为负责任的水平，所以他将来不会被审判。我确实知道大卫得到过祷告的帮助，也得到过上帝传递的爱的帮助，他凭经验知道上帝的宏大的仁慈的爱。他对基督教音乐有很深的感动，他喜爱上教堂，而且喜欢大家与他一同祷告。甚至他的老师也告诉我：“大卫有非比寻常的灵性。”为什么会这样呢？这是我们慈爱的上帝用他的恩典的手在大卫身上显现他的工作。我信赖上帝对大卫的今生和他的灵魂都有好的安排。上帝通过大卫教会我懂得了他的复杂。任何其它的答案都是不完满的。我自己也盼着那一天大卫将告诉我他和上帝的关系。我知道我会特别急切地想听到他的回答。

 

上帝赋予每一个人价值

我曾总是为自己做事能干而颇为自得。每天早晨起床时，我会写一张要做的事情的任务清单。当一天结束时，我会检查一下哪些事情做了，哪些事情还没有做。如果大多数事情都做完了的话，我会自我感觉良好。但是如果做完的事情不够多的话，我会有点郁闷，或心烦。我曾经认为一个人的价值表现在他能干成多少事情上。

大卫共花了五年的时间才学会自主地上厕所，并且他是在我花了整整一年的时间每天起床后就每隔一个小时带他去一次洗手间才学会的。看看这个男孩子吧，“学会自己上厕所”这件事位居他的任务清单的头条长达五年之久。这是不是说明他没有价值呢？很多人会这样认为。今天很多人在孩子尚未出生时做各种各样的检查以决定自己是否需要堕胎。但是我学习懂得了一个道理，那就是一个人的价值并不表现在他自己能干成什么，而是表现在上帝通过他能干成什么。

以这种观点来看，大卫在上帝的眼中就特别的有价值。上帝通过他教会了我多样的品德，如同情心，耐心，毅力，希望和爱。大卫还教我很多关于上帝的特质，他的值得信赖，他的智慧，大能，慈爱和恩典。大卫还很善于改变人，他改变了他的父亲和弟弟妹妹，他还改变了很多认识我们家的人。

 

上帝通过我的有残疾的孩子彰显他的作为

大卫间接地引领了很多人归向我们的救主。这些人中有很多是最不象能够成为基督徒的。有些人是由于他们的职位和居住的地方的缘故很难接近。当我们住在香港时，我加入了香港精神残疾人联合会的董事会。这个联合会是由十四个学校和特别教育机构组成的一个组织。杰克伊 布兰瑞芝夫人，香港财政秘书长的夫人是这个联合会的发起人。不为人知的是她有一个残疾的女儿，从小就被精神病院收容。由于我们都是母亲，又都有残疾孩子，我们俩人成为了好朋友，由于这层朋友关系，她受吸引成为了基督徒。我仍清楚地记得她祷告成为基督徒后所说的第一句话，“米雪，我知道上帝将你带来香港是为了一个目的的了。”我回答说：“杰克伊，如果不是大卫的缘故，我可能永远也不会认识你。”我心中珍藏着这份宝贵的记忆，因为这是大卫的第一个转化人的故事。

还有一次，我亲手将我自己所写的作为一个信仰基督的残疾孩子的母亲的见证书递交给邓朴方。邓朴方是邓小平的长子，是中国残疾人协会的主席，也是1988年在中国北京召开的特别教育会议上的主题发言人。同是中国人，并且作为香港精神残疾人联合会的董事会成员，我得以亲手将我所写的见证书交给邓朴方。他向我保证说他会亲自阅读。当我坐在会场中倾听邓朴方的主题演讲时，我不由得回忆起了最初的日子，当我还在为大卫为什么会得孤独症而痛苦思考时，我怎么也不会想到有一天我会因此而飞到地球的另一端向一个手中有很大权力的人讲说关于上帝的超乎一切的大能。

大卫的孤独症是我们同许多刚遇到的人交谈的催化剂。他们最初的对大卫的病的好奇感使得我们能够进一步互相了解并发展出友谊。我们的交谈又经常会转到精神的层面，并最终转到耶酥基督以及他为我们舍身的事。

当上帝通过我们的软弱，而不是我们的强壮来显现他的能力时，人们似乎更容易被吸引。圣经告诉我们，“神却拣选了世上愚拙的，叫有智慧的羞愧；又拣选了世上软弱的，叫那强壮的羞愧。神也拣选了世上卑贱的，被人厌恶的，以及那无有的，为要废掉那有的；使一切有血气的，在神面前一个也不能自夸”（哥林多前书，第1章第27-29节）。

很少有人信主是因为看到我个人所具有的刚强之处，而很多人信主是由于受到我的软弱的吸引。这提醒我记住保罗的话，“他对我说：‘我的恩典够你用的，因为我的能力是在人的软弱上显得完全。’所以，我更喜欢夸自己的软弱，好叫基督的能力覆庇我。我为基督的缘故，就以软弱、凌辱、急难、逼迫、困苦为可喜乐的；因我什么时候软弱，什么时候就刚强了” （哥林多后书，第12章第9-10节）。

大卫还通过各种不同的方式影响过其他很多的人。不久以前，我遇到一个基督徒，当他听说我有一个得孤独症的儿子时，他立刻用手握住我的胳膊，闭上双目开始为我祷告并哭泣。我一方面很感激他的同情，一方面也不得不诚实地告诉他：“情况并没有那么糟。”而且我确实是那么认为的。上帝通过大卫彰显了他的作为，而且在这个过程中他也将他自己向我们显现。

 

完美还是完美化

到底什么是完美的孩子，完美的家庭，和完美的生活？在我们所生活的这个堕落了的世界中这些是有可能的吗？人无完人。但是很明显的有些人比其他人更不完美。有残疾的孩子正提醒了我们这一点。基督徒并不能拥有完美的生活，但是他们所过的是罪被赦免了的生活。因为上帝的赦免，当他们在地球上度过此生时，他们能够开始向完美逐渐靠拢。雅各这样告诉我们，“我的弟兄们，你们落在百般试炼中，都要以为大喜乐；因为知道你们的信心经过试验，就生忍耐。但忍耐也当成功，使你们成为完备，毫无缺欠”（雅各书，第1章第2-4节）。

我们应该欢迎各样的试炼，因为它们帮助我们趋于完美并令我们完全。我们怎样才能欢迎试炼和困苦呢？一种办法就是不要总是假设我们应该反对他们。有时试炼和困苦能教给我们很多，但是我们必须要视它们为老师才能从中获益。我们所处的环境境遇，如孩子有残疾，这件事本身是中性的；但是我们如何看待这些环境，和如何对它们做出反应决定了它们是悲剧性的，还是胜利性的。我的丈夫李指出过这样一个数据，在大卫出生的那一年里，全世界共有大约6000个孤独症儿童降生。当上帝将“孤独症儿童的父亲”这张牌发到我丈夫李手中的时候，他决定不诅咒埋怨，也不试图将这张牌扔掉，而是要最好地利用这张牌。他的反应是，“让我接过这张牌并且用这张牌打出最好的成绩来荣耀上帝！”作为上帝的信徒，我们能够将一些看似重大的绊脚石变成使我们离上帝更近的垫脚石。

 

完美和来生

在我们搬家去香港之前，我们的朋友欧帝斯 康纳将他自己为广播电台创作的一组基督教音乐节目一共十二张唱片送给了我们。为了去掉唱片中的大部分对话，我们将其中部分的音乐转录到了磁带上。我们的转录工作做得比较粗糙，所以磁带上有很多错误，很多不该停顿的地方有停顿和空白。喜爱音乐的大卫凭着他的本能知道磁带中的有些歌曲有问题。所以每当歌曲中出现突然的开头或者秃兀的结尾时，他都会在错误就要出现之前，做出一个痛苦的表情。有时他会为这些错误弄得非常难受，而我们家中的其他人却对磁带中的错误听惯不怪了。尽管磁带中有这么多奇怪的停顿，秃兀的开始和结尾，播放这些磁带一度成为我们家在圣诞节时的一个传统。

2002年我们搬回美国后的第一个圣诞节，李和我决定在家中播放这些音乐的原版唱片。我事先没有料想到这会对大卫造成那么大的影响。当磁带中有错误的地方就要出现的时候，大卫象往年一样露出了一个痛苦的表情。可是唱片在这个时候并没有出错，而是继续完美地播放下去了。大卫此时脸上的表情是如此的欢乐陶醉—难以形容的满足和愉悦。就好象他在说：“啊，是的，终于完美了。本来就应该是这样的。”他从来就晓得这些年来的音乐有些问题，但是现在，它们终于恢复成它们本来应该的模样了。

这就是天国的样子。我们现实生活中的东西都不是它们本来应该的模样，但是到了天国中时它们都将还原成它们本来的面目。现实所能给予我们的最好的东西都只不过是天国中情形的一个不完全的和差劲的模拟。在此生中，我们学会接受不完美，但到了来生里，各样事物都将会成为它们本来应该的模样。而我们也终于会在完美中找到难以言表的满足和愉悦。“我们如今仿佛对着镜子观看，模糊不清，到那时，就要面对面了。我如今所知道的有限，到那时就全知道，如同主知道我一样” （哥林多前书，第13章第12节）。

 

God Working in a “Special Needs” Family

By MiXue

 

All children are special, but when our oldest son, David, was born twenty-eight years ago, he was special in another way: he was autistic and mentally handicapped.

Sometimes we get the impression that we can plan our families: when to conceive, when to give birth, and even what the child’s gender will be. Soon, possibly, we will be able to select physical and personality traits for our child. However, every once in a while, a special child gets “placed” in one of our families through natural processes. Today, science can help to detect such placements before they actually occur, but mostly for the purpose of giving parents the option to abort the living embryo if the child is potentially handicapped. Whether parents choose this option depends a great deal on how they think this child came to be with them. Was it accidental? Random? Bad luck? Or a “placement” by God?

We waited for five years after we married to begin our family. My husband, Liu, completed his service requirements in the army, then finished business school, while l taught in a high school inSan Francisco. The time seemed perfect. After an uneventful pregnancy, David was born. On the birth announcements, I wrote, “Every good thing bestowed and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation, or shifting shadow” (James 1:17).

We didn’t know then that things weren’t normal with David. But, when he was just over one-year-old, he became agitated and had unpredictable, uncontrollable temper tantrums. He no longer made eye contact with us, and did not play with toys in a conventional way. He also regressed in the speech he had previously acquired. When we finally got the diagnosis of autism (at about age two), it was a relief At least we finally had a name for what was happening with out son.

The Struggle for Answers

What is wrong? Who can help us?

In David’s early years, autism was not easily identified and we “suffered at the hands of physicians” (Mark 516). Children like David were diagnosed as “spoiled,” “emotionally disturbed,” or “mentally retarded.” Professionals sometimes added the recommendation, “Needs to be institutionalized.” This diagnostic rollercoaster played havoc with our fears and insecurities, until we finally began to rely on our own knowledge and judgment about David to see if they rang true. I still remember when Liu said, “This physician may have a Ph.D. in Psychiatry, but we have the Ph.D. in David.”

When David was five years old, we were told by still another professional that he should be institutionalized because we couldn’t give him the consistent training that an institution could provide. But we decided that, however inadequate we were, we could at least give him love, and we would trust God to help us through any other difficulties. When we turned down a grant for his full institutional care, they shook their heads in dismay and told us we were doing the selfish thing. In the face of this kind of withering pressure, we found comfort in being able to trust the Lord.

In the beginning, reading the myriad of books about autism kept my mind whirling. One night, as I worried about David’s future and his life span, I felt anguished and couldn’t sleep. Turning to Scripture, I found particular comfort in Ecclesiastesl2: 12, “But beyond this, my son, be warned: the writing of many books is endless, and excessive devotion to books is wearying to the body.” I decided then to stop reading the growing stack of books on autism, and to try to have a more balanced approach to our life situation. I wanted to trust God more than I trusted these books.

Who is responsible: Satan or God?

In order to find a cure, we needed to establish the cause of the problem. At the heart of this are the underlying questions: Who made this happen? Who is in charge? Is Satan the cause of this in my child? Alternatively, is God responsible? These crucial questions determine the proper route to take in searching for answers.

If Satan is the cause, then we must muster all forces to oppose him and recognize that our son is under a demonic dominion. At best, this kind of thinking keeps us alert and vigilant; however, it makes us afraid of our own child. This approach weakens God’s position and His ability to handle Satan and his wiles. We could spend our time and resources trying to oppose Satan. But by fan the worst outcome would be to find that, all along, we have been fighting God, and not Satan. Throughout Job’s ordeals, he continually identified the ultimate perpetrator of his suffering as God (“Though He slay me, I will hope in Him” job13:15), and never once as Satan-though Scripture shows that suffering comes directly from Satan’s hands. The sooner we identify that God is ultimately and fully in charge, the sooner we can begin to grow through our suffering.

While God is not the author of evil, He is master over it and He uses it redemptively. We live in a fallen world, under the curse. Sickness and death are part of the consequences of our sin. When Christ came, the curse cracked. However, the curse will not be broken completely and abolished until eternity (Rev. 22:3). Meanwhile Christ helps us to begin to reverse the curse as we “do all things without grumbling or disputing; that you may prove yourselves to be blameless and innocent, children of God above reproach in the midst of a crooked and perverse generation, among whom you appear as lights in the world” (Phil. 2: l4-15).

Whose fault is this?

As a Christian, another set of questions began to torment me: Why is God doing this to my son? to my family? to my husband? to me? I racked my brain to think if there was something I had done while I was pregnant to cause this condition. Since David was our first child, I had been exceptionally cautious and diligent with myself so I felt confident that it wasn’t a result of some carelessness on my part.

However, when a pastor asked us if there might be some unconfessed sin in our lives, the possible cause shifted from the realm of the physical to the spiritual. At first, we felt affronted by the suggestion that David’s autism could be a result of our unconfessed sin. But we were so anxious to find the cause in order to remedy the situation that we willingly went through the process of self-examination, just in case. We would do anything to get David healed, if only it were as simple as making confessions, or promises, or bargains with God. As our lives scrolled before us like computer programs before a virus scanner, we tried to confess all the sin that we could recall. But, in reality, we knew that if God wanted to pay us back for something, He already had plenty to be angry about from our life before we knew I-lim. Is that really what this was about?

If God wanted to deal with me according to my sin, I deserved far worse. Unlike Eastern religions that teach that karma and retributive deities bring calamity as repayment for bad deeds done in this or a past life, God deals with His children based on the grace of the Lord Jesus Christ. As Christians, we just do not get what we deserve. Instead, Jesus got what we deserved. Then He gave us what we didn`t deserve: forgiveness. This forgiveness allows us to reconnect with God.

I was riveted to john 9 when I read that the disciples, encountering the man born blind, asked the Lord, “Whose fault is this?” Jesus answered, “It was neither that this man sinned, nor his parents; but it was in order that the works of God might be displayed in him.” This brought me great relief, because it meant that God was not dealing with me according to my sin, but according to His own purposes. I felt that the huge ball and chain of guilt fall from me. From that point on, I looked for God to display His work in and through my son.

Why? or Who?

As I wrestled with the “Why’s” of David’s autism, it dawned on me that this was the wrong line of thinking. Why do I want God to tell me why? Would reasons really satisfy me or would they simply put me in a position to judge God instead? Could I really understand the workings of God? Though job asked, “Why?” God only answered by asking, “Who?”

Who is this that darkens counsel by words without knowledge? Now gird up your loins like a man, and I will ask you, and you instruct Me! Where were you when I laid the foundation of the earth! Tell Me, if you have understanding, who set its measurements, since you know? Or who stretched the line on it? On what were its bases sunk? Or who laid it cornerstone, when the morning stars sang together, and all the sons of God shouted for joy? (Job 38:2-7).

While on earth, we may not know the “Why” for difficult situations. But we can know the “Who” of it. Who is in charge? God is in charge! “I know whom I have believed and I am convinced that He is able to guard what I’ve entrusted unto Him against that day” (2 Tim.1:12). Asking “Why?” will not give us the right perspective, only asking “Who?” will.

The sovereignty of God became a strong pillar in the foundation of my faith. Even though things did not improve for a very long time, I clung to this passage: “And we know that God works all things together for the good for those who love God, to those who are called according to His purposes” (Rom.8:28). God is in charge of all things. He is fully in control. He is not subject to random quirks in the system, nor is He at the mercy of Satan.

Nothing comes to us except first through the hands of our loving heavenly Father. Our child was not God’s accident, or mistake, or my personal lapse in prenatal care. God has purposes we don’t know about. He knows the end from the beginning. Just knowing that He does have a bigger purpose in everything that happens in my life, and that it is for good purpose, is a great relief. This is why the first three words of Romans8:28, “And we know,” are so important. If we didn’t know, we would be relegated to consider our “bad luck” and spend the rest of our lives trying to “get over”, or oppose this “bitter fate.” Instead, I can see my child as a special gift from God, not a burden or a punishment. And when times get tough, He tells me:

Come unto Me, all who are weary and heavy laden, and I will give you rest, Take My yoke upon you, and learn from Me, for l am gentle and humble in heart; and you shall find rest for your souls. For My yoke is easy and My load is light” (Matt.11:28-30).

God hasALI. things in hands: He knows all about your child and his needs.

My frame was not hidden from Thee, when I was made in secret, and skillfully wrought in the depths of the earth. Thine eyes have seen my unformed substance; and in Thy book they were all written, the days that were ordained for me when as yet there was not one of them (Psalm 139:15-16).

God also knows all about you, your needs, and your suffering.

Your child comes to you from God with His grace. Like the lsraelites in the wilderness, you have the opportunity to gather just enough daily, and no more. We have a tremendous opportunity to know His faithfulness and goodness as well as our own need and deep dependence on Him. As parents, it is our privilege to go to Him often.

For we do not have a high priest who cannot sympathize with our weaknesses, but one who has been tempted in all things as we are, yet without sin. Let us therefore draw near with confidence to the throne of grace, that we may receive mercy and may find grace to help in time of need (Heb.4:15-16).

God would not give you this child to ruin your life and the lives of every member of your family, for it is God who has promised “to work all things for good.”

How can I “fix” this? ‘

In my observation, it is sometimes more difficult for fathers to deal with having a handicapped child because they want to be able to “fix” things. Failing in this, they detach themselves and leave much of the coping with daily pressures to the mother. This detachment becomes a wedge in a relationship already strained by the child`s demands. My husband, Liu, was supportive of me, but at that point in our lives, he was beginning his career. It was easier for him to occupy himself with work, rather than with David and our home situation. Sensing that Liu might be unconsciously pulling back, l tried to shield him from the more unpleasant aspects of raising our son, since I was a full-time, stay-at-home mom. I wanted to make Liu`s time with David more enjoyable, so I didn’t ask him to do the more onerous tasks. He did his share of changing diapers, but I didn’t expect him to do the daily training that l did with David.

Liu’s desires for David to be healed were deep and sincere. One day, he bargained with God, that if David were healed, we’d become missionaries. However, David wasn’t healed, and we realized that we would be missionaries regardless of whether God healed David or not in this life.

Asking “Why?” or “Who is responsible?” are common reactions to dealing with difficult trials and suffering. Bargaining is another. We always need to be aware of our own attempts at manipulating God, and not let our child become a stumbling block to our obeying God’s calling for us.

Will he be healed?

What parent doesn’t fervently ask for healing? Jesus invites Christians to ask whatever we desire: “And whatever you ask in My name, that will l do, that the Father may be glorified in the Son. If you ask Me anything in My name, I will do it,” (John l4:13-14). Of course, l had my own ideas of how God could display His works in David. lt seemed obvious that if God would just heal David like He did the blind man in John 9, it would be a great opportunity to display His work! We would gladly spend the rest of our lives promoting God and this work.

There is a fine line between asking and demanding. And like Jesus, we ultimately must surrender our own desires to His will: “Yet not My will, but Thine be done.” (Luke 22:4Z), I sometimes had to remind myself that l exist to do His will and not vice_ versa, While sometimes God does deliver us from our trials, more often than not, He delivers us through them.

Coming to grips with our own vulnerability was one of our most difficult struggles. We faced a vast array of “cures” that ranged from diets, to vitamins, to faith healers, to prophetic promises, and even to exorcists. Everyone who loves you brings you new options. As Christians, how much do we pursue, and how much do we wait upon God? Could God be using these different means to help us grow spiritually? How do we decide? Parents need to come to grips with which remedies they are willing to try and which they won’t. What makes sense to them and what does not? What is possible and what is not? What is best for the whole family?

The Unfolding Story

Acceptance

It took me an inordinately long time, at least ten years, to realize finally that there was no cure for autism. All new ideas were merely attempts to increase the possibilities of David’s improvement. The reality is that there are no cures known to man for autism. l wished that someone had told me this early on in our experience with David. Parents should be wary of their own vulnerability and resist their own natural urges to push beyond what God wants for us. Of course, God can do anything He wants in His sovereignty, but we find it difficult to live in this tension and easily cross the line into presumption, lapse into passive acceptance, or fall into depression.

Incentive to Change

For the first few years of David’s life, l looked expectantly for signs that he would be healed. Meanwhile, I tried to find ways to cope with his increasingly distressing behaviors. As the healing l desired was not as forthcoming as l had anticipated, l took on the bifocal vision of imminence and pragmatism: what do l need to do right now to change and improve this situation?

Coming to grips with David and his behavior proved to be life-changing. God used two catalysts. First, David was a handful every day. l couldn’t avoid dealing with his behavior. Second, the state special education services trainer offered to help us. When she first came into our home, l fully expected her to train David. I was astounded to find that she wanted to teach me how to train him! And she wanted to use a behavior modification approach.

I was suspicious when l heard her describe using positive reinforcements to train for desired behavior. The techniques felt like bribery and manipulation. They seemed mechanical, impersonal, and without love. And I do think that the underlying behaviorist premises have that logic. But this special ed trainer really helped me, because she had one very big thing right: the consequences of behavior do matter. She helped me rethink the rewards and consequences l was giving David. God used her to challenge my misdefinition of love, and forced me to learn to love David more realistically. l had thought I should treat David with unconditional acceptance despite his distressing behavior. When David had one of his temper tantrums, l tried to console him with hugs. However, instead of helping to stem the tantrums, the hugs only reinforced them, and they continued. According to the trainer, temporarily withholding my hug from David until he stopped screaming would help him understand that he could not get his way by screaming. Not only was this easier said than done, it was unnervingly unnatural for a mother to do. l only agreed to try it when I realized that my own methods were hopelessly and painfully ineffective.

David’s tantrums came about five times a day and lasted approximately twenty minutes each time. Within months, the tantrums stopped as l learned to love him by rewarding good behavior rather than bad. We went on to work on other behaviors that needed changing, like widening his food range (which had quickly narrowed to only carbohydrates), making eye contact with us, allowing me to leave his sight, dressing himself, and eventually becoming toilet trained. Today, David’s socially acceptable behaviors allow him to join us in most social situations.

My initial reservations about use of incentives gave way to a new understanding of how God Himself uses incentives to motivate us as well. Use of incentives is not wrong. But what we use as incentives can be. And incentives should not be seen as a mechanical, technical means to control another powerless person. Rather, incentives must be used in the context of a loving relationship.

We are created to be motivated by incentives (both negative and positive). God’s commands usually have promises for those who obey and punishment for those who don`t. God motivates us by promise of future praise (longing to hear, “Well done, good and faithful servant”), or reward (Heb. 11:6), fear of punishment, or loss of reward (2 Cor.5:10and l Cor.3:15). These are personal, relational blessings, and warnings.

ln the beginning, we used cookies to train David because he loved them, but eventually we moved on to more appropriate relational incentives, such as our praise, or approval. Our society effectively uses this kind of incentive system, too. Students study for grades, but eventually, it is hoped that they will study for learning itself. Students can be faulted for only working for the grades, but they are first to admit that having no grades would adversely affect their studying. People work for a salary, but if money becomes more important than one’s own ethics or integrity or family, then this incentive has the potential to be a stumbling block. Use of incentive in the context of relationships with God and others is the most crucial way to influence behavior.

Our selection of incentives reflects our values. Our view of what incentives can and should do also reflects these values. Do we want behavior change (absolute obedience?) because of mechanical, robotic, or fearful incentives, or do we want behavior change in the form of appropriate relational responses?

l had had a mistaken concept of unconditional acceptance, a concept not found in the Bible as a description of how God treats us. While we are saved by grace, or unmerited favor, there is the condition of faith for salvation (Eph. 2:8-9). While the kindness of God can lead us to repentance (Rom.2:4), God also “disciplines us for our own good, that we may share His holiness” (Heb.12:6-l1). Mothers often mistakenly think that we need to unconditionally accept any kind of behavior from their children as an expression of godly love for them, and that this acceptance will eventually lead them to repentance. Parents can try to love unconditionally, but need to train conditionally. Our finite attempts at extending unconditional acceptance only look and work like license or unrestricted freedom. They do not have the same effect as God`s grace. Only God can extend grace, or unmerited favor, to people. He is the omniscient and omnipotent One.

“Piece is missing! Piece is missing!”

Autistics exhibit many ritualistic behaviors, compulsively repeating actions and words over, and over, and over, and over again. This gives them a false sense of security that their world is predictable, controllable, and perfect. When they are within their ritualistic system of behaviors, they feel comfortable. When something interrupts or thwarts these behaviors, they have emotional fits.

While David could not count easily, he would intuitively know, at a glance, that one of the pieces of his 100-piece tinker toy set was missing. During these times, he would scream incessantly while we frantically dashed about pulling up rugs and moving furniture looking for the missing piece, To help him articulate his problem, I taught him to say, “Piece is missing,” instead of screaming.

After a while, we realized that it was not in his best interest to give him the impression that puzzle pieces could always be found, or that his desire to have everything in perfect order would always he indulged. We also realized that when things weren‘t going his way, he had to interact with us more appropriately. He realized that he needed us to help him, and that isolating himself within his own ritualistic behaviors did not achieve what he wanted. We carefully braced ourselves to teach him this new lesson about missing puzzle pieces.

When he began screaming, “Piece is missing,” we looked around for it, as usual. But if we could not quickly find the piece, we said, “David, you are right. A piece is missing and we can’t find it, but it will be O.K.” He looked at us with disbelief. “Piece is missing! Piece is missing!” he kept insisting. We calmly repeated, “Yes, the piece is missing, but everything will be all right.” Because we maintained a consistent, calm front, David eventually accepted this approach, and stopped screaming.

This was a turning point for him in learning that things don’t always turn out the way he wants, but that it is O.K. This understanding led to his becoming more flexible in many other areas. As a result, we take him with us almost anywhere and everywhere we go. He is able to tolerate many and varied changes-his ability to adjust is remarkable for an autistic. lt was a major decision in our family to teach him to fit into our imperfect world, instead of trying to make his own world perfect.

It is sobering to realize that l, too, am autistic in my desire to have everything go my way. l liked having my “ducks in a row”, too. lf they weren’t, and “a piece was missing,” l felt like having a fit. But God doesn’t allow us to always have our own way, because if we always get our own way, we don’t need Him any more. We become content in living within our own self-controlled world. When a “piece is missing,” in our lives, it reminds us that we really aren’t in control of everything that happens, but that we must behave appropriately by going to Him and engaging with Him to help us.

“No matter what. No matter what.”

When David was just learning to talk, he was “echolalic”, which means that if we asked, “How are you, David?” he would answer by repeating the same words, “How are you, David?” This was a difficult habit to break, but before we did, God inadvertently spoke to us through it.

Autistics don’t respond much to affection and we began to realize how difficult it was to continually be affectionate to a child without any response. So, to counter our own subconscious pulling away from David, we decided that when we put him to bed at night, we would tell him, “David, we love you, no matter what.” He repeated, “No matter what, no matter what, no matter what.” This poignantly reminded us of our commitment to him. We also began to understand how “autistic” the world is to God, so unresponsive to His continuous outpouring of love. Yet, because of Jesus, God loves us “no matter what, no matter what, no matter what.”

Placed by God

Because David is the oldest of our three children, each twenty months apart, we decided not to stigmatize his younger siblings by mentioning that there was anything “wrong” until they asked. One day, when they were about four and two years old, Christie and Michael came to me to say, “David is bigger than we are, but he can’t talk. What’s wrong with him?” I dreaded this question and asked the Lord to help me convey to them what a gift David was to us. I told them that when God was making families in heaven, He knew that David would need a lot of extra love and wanted to find a family that would give him that love. “He looked clown and saw the Smith family with little Suzie and Johnny. They have such lovely toys.” Then God thought, “l wonder if should give David to them?” Christie and Michael shook their heads with great concern. “Well, how about the Jones family? Their mommy and daddy are so nice and have lots of fun?” “No, no!” they insisted. “Then, God looked down and saw your mommy and daddy and little Christie and little Michael, and said, ‘l wonder if I should send David to them? Would they give him the love that he needs?” “Yes, yes, yes!” they shouted, jumping up and down as if they had just won the million-dollar lottery.

They later asked if David would ever talk and I assured them that certainly in heaven he would, if not on earth. They began to wonder what he would say. 1 suggested that he would tell us how much he appreciated all the kind things that were done for him by others. David is only a shadow now of what he will be in heaven. So are we all. Sometimes it is very helpful to think about each other as we will ultimately be in eternity.

This was the beginning of their awareness of David’s differences and difficulties. Both Christie and Michael were taught early on that the world isn’t fair. This was obvious in our own family-each wasn’t given the same mental or physical capabilities. So, fairness is not about giving the same to everyone, it is about giving what each one needs.

We tried to include David in our family activities as much as possible, and when the children were young, we tried to keep them all together Later as they got older, I encouraged them to take David with them to youth fellowship where he was accepted by the others in the group. However, as they entered their adolescent years, I didn’t want them to dread being stigmatized by David. Instead, I‘d rather they’d enjoy having him around, so I was more careful about asking them to include him in their activities. Sensitivity to their different stages in their lives was important. I was going for the long-run; I did not want my children to ever say, “My childhood or family was ruined by my autistic brother.”

When David became too big for me to take to the women’s restrooms, I enlisted Michael to take him to the men`s toilet. This was a way to give Michael responsibility for David, and though it was difficult, Michael rarely ever complained. ln fact, when they were young, Michael had been known to get into fights with boys who were older and bigger because they made fun of David.

Both Michael and Christie chose to write about David in their college entrance essays. Christie wrote about how David taught her about her own perfectionist’ tendencies. Michael wrote about how he always shared a room with David as a child, and how he appreciated David’s willingness to accompany him to the toilet in the middle of the night when he was scared. “How many older brothers would do this for you?” he asked.

Ministering with a Special Child

When David was nine years old, we planned to go overseas to Hong Kong to do lay ministry, but our doctors and other professionals cautioned that we would be leaving the country with the best educational and support services for an autistic child. This move, they said, would severely hinder his chances for maximum growth and development. However, we didn’t think that God would call us to serve Him and give us a child who would hinder us from this calling. We must be careful not to automatically think that such a child would eliminate us from ministry. We decided to trust God to help us meet David’s needs. After all, God is The One we trust wherever we are, whether inHong Kong, or in theU.S.It is good to remember that I am also in the hands of the One who holds my special needs child. He “works all things together for the good” for us all.

Sometimes when a family has a handicapped child, there can be a danger of overly catering to him and letting him define who the family is, and what they do. This kind of focus is not good for any children, handicapped or not. In fact, all children can be spoiled, handicapped or not, and we should train and teach them that they are not the center of the universe. They are sinners, too, and need discipline and limits. While we do try our best to give David what he needs in his world, we also try to incorporate him into our own family life and ministry.

Spiritual Needs of a Special Needs Child

Someone recently asked, “Is David a Christian?” The answer? David doesn’t have the mental capacity to understand the plan of salvation, how to pray a prayer of repentance, or respond to an invitation to accept Christ as his savior. Some would say that he has not reached the mental age of accountability and therefore he will not be judged. 1 do know that David has had the benefit of being prayed for, of being loved through the Lord, and of experientially knowing God’s merciful, generous, and disciplining love. He responds deeply to Christian music, loves going to church, and loves being prayed with. Even his teachers say, “He has an exceptional spirit.” Why is this? The gracious hand of our loving God is displaying His work in David. I trust God for David’s soul, as well as for his life. God has taught me, through David, that He is complex. Any other answer is not sufficient. I, too, look forward to that day when David will tell me about his relationship to the Lord. I know I’ll be eager to hear his answer.

God Assigns Value to Every Person

I always prided myself in getting a lot of things done. When I got up in the morning, l’d make a list of things to do, and at the end of the day, I’d look over what had or hadn’t been crossed of£ lf a lot got crossed off I‘d feel good about myself If not many were crossed off l would feel slightly depressed or annoyed. l thought what made a person valuable was what he or she could accomplish.

David took five years to learn to be toilet trained-and only after l took him to the toilet every hour of his waking day for a full year. Now here’s a boy with “become toilet trained’ on top of his list for five years. Does this mean that he isn’t valuable? Many would say he wasn’t. Many, today, take tests while babies are in the womb to find out if they should seek an abortion. But I learned that what makes a person valuable is not what he can do, but what God can do through him.

And in this way, David is very valuable to God. God has used him in my own life to teach me such traits as empathy, patience, endurance, hope, and love. David has also taught me much about God’s trustworthiness, wisdom, power, love, kindness, and grace. David has been instrumental in changing lives of his father and sister and brother, as well as the lives of people who know us as a family.

God Displays His Work through My Handicapped Child

David has been indirectly responsible for introducing many people to our Savior. Some of these people were the most unlikely people to become Christians. Some were difficult to reach because of distance and position. While we lived in l-long Kong, I joined the board of the Hong Kong Association for the Mentally Handicapped, an organization with fourteen schools and special needs programs. Lady Jackie Bremridge, the wife ofHong Kong’s Financial Secretary, started this association. Unbeknownst to most, she has a handicapped daughter, who was institutionalized from a young age, because we were both mothers of handicapped children, we developed a relationship that led to her becoming a Christian. I still remember her first words right after she prayed to become a Christian: “MiXue, l know that God has brought you toHong Kongfor a purpose.” And I replied, “Jackie, if it weren’t for David, l would never have known you,” And l treasured in my heart that this was David’s first convert.

Another time, I gave’ my written testimony on being a Christian parent of a handicapped child to Deng Pu Fang, the son of Deng Xiao Peng, China’s past Chairman. Deng was the director of all services to the disabled inChinaand was the keynote speaker at a special education conference inBeijingin l988. As a Chinese person myself and a board member of the Hong Kong Association for the Mentally Handicapped, I was able to personally hand Deng a copy of my testimony. He promised that he would read it. As he gave the keynote, l thought back to the days when l first wrestled with the “why” of David’s autism, never guessing that one day it would lead me to the opposite end of the earth to tell a very powerful person about God’s even greater power.

David`s autism was the catalyst for conversations with many other people with whom we came in contact. Initial curiosity about David’s autism led to further friendships. Our conversations often turned to spiritual matters and eventually to Jesus Christ and His ultimate sacrifice.

People seem to he more attracted to the Lord as He demonstrates His strength in our weaknesses, rather than in our strengths. Scripture tells us,

God has chosen the foolish things of the world to shame the wise, and God has chosen the weak things of the world to shame the things which are strong, and the base things of the world and the despised, God has chosen, the things that are not, that He might nullify the things that are, that no man should boast before God (1 Cor. 1:27-29)

Very few people are drawn to the Lord by strengths that I personally have, but many are drawn by my weaknesses. This reminds me of the Apostle Paul’s words,

He has said to me “My grace is sufficient for you, for power is perfected in weakness.” Most gladly, therefore, l will rather boast about my weaknesses, that the power of Christ may dwell in me. Therefore, I am well content with weaknesses, and with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then I am strong (2 Cor. 12:9-10).

David has influenced many other people in one way or another. Just recently, I met a Christian who, upon hearing that I had an autistic son, put his hand on my arm, closed his eyes to pray and began to weep. While I did appreciate his compassion, I had to say in all honesty, “It’s not that bad.” And l meant it. The Lord has displayed His work through David and revealed Himself to us in the process.

Perfect or Perfected?

What is a perfect child, a perfect family, a perfect life anyway? Are they possible in this fallen world? We are all imperfect. But some are more obviously imperfect than others. Special children are a reminder of this. Christian do not have perfect lives, they have forgiven lives, Because of God’s forgiveness, they can begin the journey towards perfection in this earthly life. James tells us:

Consider it all joy, my brethren, when you encounter various trials, knowing that the testing’ of your faith produces endurance. And let endurance have its perfect result, that you may be perfect and complete, lacking in nothing (James1:32-4).

We are to welcome trials because they help to perfect and complete us. How do we welcome trials and suffering? One way is by not always assuming we should oppose them. Sometimes, these trials and sufferings have great lessons for us, and we can’t begin to learn from them until we welcome trials as teachers. Circumstances, like having a special needs child, are neutral in and of themselves; it is how we view these circumstances, and respond to them, that makes them tragic or triumphant. Liu, my husband, points out that the year that David was born, about 6,000 autistic children were born, When God dealt the “autistic father” card into his hand, he decided that instead of cursing, or trying to get rid of the card, that he would make the best of it. His response was, “Let me take this card and play it the best I can to the glory of God!” As believers we can take circumstances that look like major stumbling blocks and use them as stepping-stones to get closer to God.

Perfection and Eternity

Before we moved to Hong Kong, a friend gave us a set of twelve records of Christmas music and programs he had produced for radio, We copied some of the music onto cassette tapes in order to eliminate most of the talking, We did it very clumsily, with pauses and stops in lots of wrong places, David, who loves music, instinctively knew there was something wrong with some of the songs, and prepared himself tor abrupt starts and endings by bracing himself with a grimace each time, just before it happened. Sometimes he would get very agitated before those spots, but the rest of our family just got used to listening to these mistake-laden tapes. It became a family tradition to play these tapes at Christmas, even with all the strange pauses, starts, and abrupt endings in the wrong places.

The Christmas after moving back to theUSin 2002, Liu and I decided to play the original records. I didn’t realize what an effect this would have on David. As usual, he braced himself for the spots with the copying mistakes. However, instead of mistakes, the records played perfectly. The look on his face was stunning-unspeakable satisfaction and joy. It was as if he was saying “Ah, yes, at last. Perfect, just the way it should he.” He always knew the music wasn’t right, but now, finally, it is as it was originally meant to be.

This is how heaven will be, Things aren`t the way they should be right now, but they will be then. The best this world has to offer is only a poor, fractured imitation of the way it will be. We learn to live with imperfection now in this life, but in eternity, things will be the way they should be, and we will finally find unspeakable satisfaction and joy in perfection. “For now we see in a mirror dimly, but then face to face; now I know in part, but then l shall know fully just as I also have been fully known” (1 Cor. 13:12).