种瓜得瓜－－在美国跟Lovaas作ABA

melon

再过几天就是我家甜瓜三周年正式诊断纪念日。那时他刚刚２２个月。虽然在他２１个月的时候我就强烈怀疑他是ASD,但当他被医生正式诊断的时候，我的心里还是一振，眼泪在眼框里打着转，心里不是个滋味。

转眼３年过去了。经过这３年的高强度LOVAAS ABA 早期干预治疗，甜瓜跟以前是天上地下，尽管他跟正常孩子还有一定差距，但是和他自己相比，已经整个换了个人了。这３年的艰辛和快乐，只有自己知道。

多少次想给甜瓜写个日记，记录下我们这一段不平凡的日子。但是每天已经把全部的时间给了他－－等把他弄上床，我也已经是筋疲力尽了。最近看了这里很多家长的日记，颇受启发，下个决心也来开片瓜地，来写写我的种瓜日记。这里会有我的经验分享，训练纪实，也会有我自己的心情日记，所感所想。因为时间关系，以后可能会经常用英文来写，因为输汉字太慢了。所以先请大家谅解了。

melon

和这里的很多父母一样，面对自己的第一个孩子，我们并没有太多经验，也很少有机会见到其他孩子是个什么表现。虽然我在怀孕期间读了不少书，但是实际经验并不多，并不知道孩子多大应该怎样。所以在我家甜瓜达到几乎所有‘抬头，翻身，坐，爬，走’等指标后，我并无太多顾虑。而且即使他２０个月仍然没有任何语言时，熟悉的儿科医生也说等到２周岁再检查，不用过早忧虑。就在甜瓜２１个月时，一个偶然的机会让我意识到我的孩子和其他这个年龄的孩子有多么不同 －－没有主动语言，不听指令，叫他名字没有反应，很少和我们有目光对视的交流。不知为什么，我的脑袋里闪出‘自闭症’。上网一查，感觉症状如此相似，顿时泪如雨下，难以置信。

oy

祝福甜瓜！

期待看到更多的。。。。

binfeng2000

欢迎"甜瓜上桌"!

张春华

很可爱的名字.

Ean妈妈

欢迎分享！谢谢分享！。现在的我就是当时的你。这乐观和向上那里是说道就能做到的？
告诉我怎么样才能积极面对。

Ean妈妈

什么是Lovaas？谢谢

melon

谢谢大家的关注。

Ean妈妈，Lovaas博士是ABA的鼻祖之一，现在中国国内做的ABA我感觉多半是基于Lovaas的ABA的理论和方法的。美国这边VBA (Verbal Bahavior Analaysis)也有相当的基础，但实际上这两种方法的理论基础是一样的，都是用强化物来强化好的行为（positive behavior)。

这里有一段关于Lovaas博士的英文介绍 －－

Dr. O. Ivar Lovaas is a world-renowned autism expert who has devoted his career to improving the lives of children with autism and their families.

His Lovaas Model of Applied Behavior Analysis is based on 40 years of research and is backed by published studies showing half of children with autism who receive this intensive treatment become indistinguishable from other children on tests of cognitive and social skills by the time they completed first grade.

melon

早期干预 －－做什么，找谁做？

３年前的此时，我上班时坐在电脑前，完全无法集中精力工作，想起孩子，就会煽然泪下。赶快抓一块纸巾擦干泪水，毕竟这是在办公室。和很多家长对诊断表示不服的是，我不怀疑，不否认，不回避，我恨不得能在一夜之间成为这方面的专家。从网上找到这方面的书，中午午餐时间马上跑到图书馆去借。到图书馆区区５分钟的车程，却要过好几个红绿灯。等我到了那里，我完全不知道自己是怎么开车来的！ 惊诧之间，却发现泪水早已打湿了衣襟。

晚上下班回到家，忙着去engage甜瓜，带他玩，虽然那时候我还不太在行。等到晚上把他弄睡了，再开始看我从图书馆借来的书，一看就是大半夜。那段时间，看了基本所有经典的书，像Catherine Maurice的‘Let me hear your voice'，Temple Grandin等都是那个时候看完的。美国的家长我特别推荐’Overcome Autism'。这本书相对比较新，里面有很多各个州的ABA相关服务的信息。

在我日以继夜地饥渴地阅读所有相关信息，把甜瓜放在所有全国领先的早期干预机构的等待名单上时，我们州里的０到３岁计划已经开始给甜瓜做语言，感统，游戏治疗。我面视了所有的治疗师，一定找有经验的，同时尽量让她们把时间安排在早上８点或者下午５点多，这样我可以学习参与治疗。在她们不在的时候，我就可以给甜瓜做。事实证明，这个非常重要有效。不论从那个角度讲，我都是最有积极性的治疗师。（后面我准备专门开篇说家长在整个治疗中的角色和作用）

与此同时，我找到当地自闭症协会家长互助会，参加会议，找到有经验的家长，从他们那里打听本地的情况，然后迅速和最优秀的治疗师取得联系，排上她们的等待名单（几乎所有好的治疗师都有很长的等待名单).

就像买房子一样，短短１，２个月里，我根据自己所掌握的专业知识，以及从别的家长那里探听到的本地资源，我已经开始很自信地打电话给我心目中候选人，问我关注的问题，看看双方能不能迸出火花。听着像找对象，但是实际情况的确如此，对别人合适的未必适合我们家。

电话打了一串，情况渐渐清晰，Lovaas ABA是唯一做过‘双盲法’对照试验的，地板时光也不错，可惜本地没有很好的训练师。ABA consultant 里面，Lovaas 的人听着最上路，虽然他比别人要贵３倍！一分钱一分货，早期干预是孩子一生中只有一次的机会。我要用最好的！

melon

Lovaas的consultant这么贵，钱从哪里来呢？当时想着无论如何先用积蓄抵挡一阵，实在不行我们就卖房子吧。父母和公婆听说了，都表示要把他们毕生的积蓄拿出来给孩子治疗用，我们无论如何也是不可能接受的，告诉他们船到桥头自然直，尽管我们心里也没有底。

事情就是这么巧。有一天我和Lovaas的consultant在电话里敲定一些以后培训的细节时，顺便就问了他这个问题。他居然说有的家长找到保险公司报销了！赶快和那家取得联系，得到一些关于本州保险法要求包括自闭症，广泛发育障碍的信息。虽然那家和我们用的不是一家保险公司，但是这还是给了我很大的信心，我要去和我的保险公司谈一谈。

上帝知道那些普通的保险公司客户服务部对这些消息几乎一窍不通。虽然保险法有规定，但是他们好像根本不知道这么回事，既不肯定也不否定。我们递上去的还款表格（reimbursement request)他们总是搞不对。每次给他们打电话要托个半个小时（因为一帮人谁也不知道）还搞不对，弄的我满腔愤怒又筋疲力尽。

那时的我，恨不能一天有４８个小时来陪孩子，哪里有功夫和他们天天废话呢？急中生智一个电话直接打到客服头头那里，感谢上帝，终于找到了明白人！从此免去我与那些一头雾水的普通客户服务代表鸡同鸭讲，虽然定时file claim, follow up, deposit checks etc 还是麻烦事。

钱的大头终于解决了，大家都很高兴。下面要找人了。

kwenma2

melon Mommy, welcome!!

oy

谢谢你的帖子。很有启示。

不同的州可能有不同的服务政策。

你们州里是家长自己挑选训练师，然后政府报销开支吗？有没有费用的上限？我们这儿，家长没有任何选择，政府指定的机构指定的训练师指定的训练时间，不容你有挑选的余地。而且，ABA训练全部关门进行，不允许家长进去。这种情况下，服务水准真的大打折扣。

请问你是什么时候开始给孩子找私人训练师的？是三岁以后吗？听你说他个训每周达３５－４０小时，这包括学校提供的服务还是全是你们私人雇请的？每天开车去这去那，还能把这么多满意的人在合理的时间上安排下来，应该需要不少计划协调吧？你们有那么多的训练师，是否定期把大家叫到一起开会讨论进展呢？还是各自负责各自的训练就行了？你们如果全职工作，怎么保证孩子的接送。。。

但愿能在你以后的贴子里看到这些经验之谈。。。

我也开始留心给孩子找私人训练师。如你所说，waiting list太长了。我们想约的O.T要等８个月才能开始给我们预约。。。。而且我们这个小地方，训练师很少，好的训练师更是少之又少了。根本没有挑选比较的空间。唉，真是羡慕你们的条件！

NO PAIN, NO GAIN.我一定要以你们（比如你，kwenma2....)为榜样，努力再努力！



以上文本借助www.InputKing.com在线中文输入法输入

下面引用由melon发表的内容：

早期干预 －－做什么，找谁做？

３年前的此时，我上班时坐在电脑前，完全无法集中精力工作，想起孩子，就会煽然泪下。赶快抓一块纸巾擦干泪水，毕竟这是在办公室。和很多家长对诊断表示不服的是，我不怀疑，...

melon

OY,

我想美国全国都是０到３岁是州里管，就是语言，感统等等，我们这里有很多治疗师你可以选(But quality varies a lot, and that's why I spent so much time to interview people)。ABA我找的是私人的（Lovaas Institute)，这就是我写的保险负责的这部分。３岁以后我们把语言，感统也全部换成私人的了，也是保险管。其实３岁以后学区应该管，但是他们的质量完全在我的控制之外，所以我们根本就没有跟他们罗嗦了。

我们尽量找愿意来家里服务的私人治疗师，很不容易！正如你所说的，两口子全职工作，确实没时间带着孩子跑来跑去。我们ABA小组每个星期开会（现在是２个星期一次），有时语言治疗师也会加入，或者由我来负责传达。It's very important to keep everybody on the same page and working on the problems consistently.

下面引用由oy发表的内容：

melon

虽然Consultant确定是请Lovaas的人，但是问题并没有完全解决 －－Consultant只是管制定治疗方案，培训ABA个训师，他不是一个星期跟孩子工作４０个小时的人。所以我们现在要找的，是ABA个训师。

这又是一个大难题， 我去哪里找呢？ 有经验的固然好，但是那些人多半在本地一些私人办的ABA机构里，不愿意出来做。而我在观察了私人ABA机构训练，以及考虑到孩子的具体情况（还不到２岁）之后，完全否定了把孩子送过去的可能。那我们就只能找没有经验的人来培训了。

从做了这个决定起，我就正式有两份全职工作了。一份给公司打工挣钱，另一份是运作甜瓜的ABA home program －－从招人，培训，制定协调每个人的时间表，以及发工资等等。外加协调ABA team, speech therapist, OT, PT, DT, (later school teacher etc). 这完全就是在运转一个小公司，只不过我一分钱报酬也没有。

因为找的ABA个训师以前都是没有作过ABA的，所以来了以后第一件事情就是培训。合适的留下，不合适的走人。感谢主，我们遇到了几个聪明又爱甜瓜的女孩子，帮了我的大忙。可是同时，fail掉的要多的多。这个过程实在是个非常frustrating的experience，既花钱又费力更劳心。为了治疗的连续性，我们尽量减少人员变动，可是经常是人算不如天算。我现在有时还会想，如果我们能有更多的优异的ABA个训师，甜瓜的进步还会更大。但是另一方面，我在可能的情况下，已经竭尽全力了，所以我无怨无悔。

niuniu2007

特别再次谢谢melon曾给我提供的信息和帮助。
希望以后能慢慢的读到小甜瓜的近况。有没有上K？我们孩子都是2002年的，望多交流。

说起中文输入，大家一定要用microsoft pinyin IME， 自从我用这个之后，中文打字如行云流水

melon

妮妮妈，不客气。

甜瓜这个夏天到现在的进步还是很大的。从秋季学期开始,上午开始自己上正常幼儿园（他生日小，所以还在preschool,明年上K)，中午在那里吃饭睡觉，下午我们的ABA个训师会去辅助他和别的小朋友玩。之所以这样安排是因为上午比较structure,他完全可以自己搞定。老师说他表现不错，基本不需要老师的额外照顾。有什么问题（注意力不集中啦）也是一点就好了。下午自由活动听说也大有进步，和小朋友的coorporative play弄的不错了，两个人说话也是有来到去的。不过甜瓜不是conversation leader, he is usually the follower, and he still has difficulty to fix a broken conversation with peer. 会主动找他喜欢的小朋友玩，但是不够persistent. 有时别人没听见他说话，他就放弃了，而正常孩子会用各种办法来get other‘s attention。

上面说的是好的，麻烦也还不少，有空我要贴出来向大家请教。

下面引用由niuniu2007发表的内容：

特别再次谢谢melon曾给我提供的信息和帮助。
希望以后能慢慢的读到小甜瓜的近况。有没有上K？我们孩子都是2002年的，望多交流。

说起中文输入，大家一定要用microsoft pinyin ...

kwenma2

下面引用由melon发表的内容：
OY,

我想美国全国都是０到３岁是州里管，就是语言，感统等等，我们这里有很多治疗师你可以选(But quality varies a lot, and that's why I spent so much time to interview people)。ABA我找的是私人的（Lovaas Institute)，这就是我写的保险负责的这部分。３岁以后我们把语言，感统也全部换成私人的了，也是保险管。其实３岁以后学区应该管，但是他们的质量完全在我的控制之外，所以我们根本就没有跟他们罗嗦了。

我们尽量找愿意来家里服务的私人治疗师，很不容易！正如你所说的，两口子全职工作，确实没时间带着孩子跑来跑去。我们ABA小组每个星期开会（现在是２个星期一次），有时语言治疗师也会加入，或者由我来负责传达。It's very important to keep everybody on the same page and working on the problems consistently.

Hi OY,

Same thing we did for my son now. Now he's in the typical classroom of preschool and one teacher is responsible for him to play with other kids. And everyday his school speech therapist will be in the classroom for his speech therapy. And we do not count on the school's services, only count on they can provide the kids environment and my son can get use of it. And tomorrow I will go to school to monitor. Also my private therapists( two of them) will go to monitor in the following weeks. This public school does not allow private therapist to work in the school, only monitor. So we plan to do something try to push the monitor once bi-weekly from our private therapist. And then push upto once a week. My private therapist think she can build the good relationship with the school people so that she can kinds of tranform the monitor into faciliated style. Hope this will work.

Although the school had full-day program, now we just put my son there half day, and then come back home for lunch, then home program. It's great challenge to find qualified therapists to have home visit. We also think the quality is the most important thing.

And we are now trying to sync all the speech therapist together recently. Since my son had 5 speech therapists now, it's important for them to communicate together. Also my ABA therapist and two of the speech therapists are in sync. They sometimes monitor each other's session and then discuss together. Also now is trying to sync school services with our private therapist. The school consultant has done the monitor for our three private session. And the private therapists will go to school to monitor and rate the school based on the school monitor system brochure I got from Karen Levine. The next step now I want to move is to sync all floortime therapists together.

As same as you, we are both working, so we only can find as many as home visit therapist to fill in my son's schedule. Only OT/PT is hard to do in home, so I take my son to OTA and floortime on late afternoon of two days, and my husband take him to PT on Friday. Then we also take him to OT on Saturday. So same feeling: it's hard to make all the things work, but you have to! Not only kid's therapies , but also your job!

Sorry for English because I have the exactly same feeling as Melon had. So I want to express this immediately.

Best,
Kwenma  

melon

Kwenma,

Great to hear that your local school district is quite cooperative and it's really nice that they provide preschool for typical kids as well so your son can spend time with them.

My observation at Melon's preschool is usually hard since he wants to stay with me as soon as he sees me. I wish the school has a one-way window so I can better observe his performance out there.

And he cried while I dropped him off at school this morning :-( He kept saying I want my grandma to pick me up in the afternoon. Teacher said he was a little like that yesterday after Daddy dropped him off while he was better later.

Guess I should be cautious to praise him publicly :-) Knock on wood he will do good today.

sorry for the English input -- it's gonna be a busy day at work.

Melon's Mom

kwenma2

下面引用由melon发表的内容：

Kwenma,

Great to hear that your local school district is quite cooperative and it's really nice t...

My observation at Melon's preschool is usually hard since he wants to stay with me as soon as he sees me. I wish the school has a one-way window so I can better observe his performance out there.

Hi Melon's mom,

I had the same worry about this. I do not want my son to cling to me too. Fortunately, today he's doing pretty well because when he noticed me there during his circle time, he just smiled at me and did not move and run to me. The whole half day almost like that. He did his thing and sometimes checked me with smile. His teacher said this behaviour looks like a big boy's behaviour.

Only one bright point I saw this morning is my son took his aid's hand and come to me, and he pointed to her, said to me: "Mrs Howard", then looked at me, said:"Mommy". Looks like he's introduced his aid to me.

However, I did see the flaw in the school's education. The faciliate work is not good. I will talk more with my private therapists after they have school monitor to see what kinds of measurements we can take. Apparently, they may be lack of experience to faciliate peer play for the special kids.

BTW, I sent you email, could you please check it?
Thanks,
Kwenma

melon

Just replied your email. [em08]

I am so glad to hear your son was giving you such a nice social smile while you were there! That's really awesome! Melon doesn't usually do that -- his facial expression was usually blank while he was at school, although he has been more lit up lately for activities he enjoys. [em07]

下面引用由kwenma2发表的内容：

Hi Melon's mom,

I had the same worry about this. I do not want my son to cling to me too. Fortuna...