苦尽甘来---世界上最好的DAN!医生：儿子生物疗法记录

kangkangbei

谢谢K妈！

kwenma2

钢琴

最近三个月，突然喜欢上弹钢琴。以前逼着能够弹10分钟就不错了，还有情绪问题。现在自己回家弹一个小时没有问题。有时还能够专注地练习到2个小时。当然是我睡懒觉的时候。学习热情空前高涨，进度一下子加快。还要不断地问我他弹的哪首好听？很有表演欲望。昨天我跟老师说下周突击教他一首好听的，下个月到上海好跟LISA她们家的桐桐PK一把。桐桐的钢琴是弹得相当不错的，呵呵，等着看他们两个弹钢琴的热闹劲。

现在我要扩展的是哪种音乐听起来好听，里面有一种什么感觉，包含什么样的情感，让他去充分想象。

JJmum

等着看两位小帅哥PK啦!小K咋那么好呢!我们家那个干什么都要逼.

小城故事

小K已经被开除出自闭圈了。

睿老爸

K妈,你可以给我传份RDI和FLOOR TIME的资料吗？谢谢
wangshunlai@126.com

htyuan

K妈您好，在您的自留地里得知小K做过PT、OT，我也想给孩子做，可是我们这边做PT/OT的老师说他们不收自闭的孩子，理由是，PT是一个痛苦的、被动的过程，自闭的孩子配合度达不到要求，做不了。不知您在国外，那边的治疗师也是这么看的吗？做PT真的是一个很痛苦的过程吗？我担心这边的治疗师只是推脱之词，但也不应该啊，反正都是要交钱的。
不过，小K的状况真的很好（是不是因为这个，他才可以做PT、OT），我很是羡慕！

kwenma2

下面引用由htyuan发表的内容：

K妈您好，在您的自留地里得知小K做过PT、OT，我也想给孩子做，可是我们这边做PT/OT的老师说他们不收自闭的孩子，理由是，PT是一个痛苦的、被动的过程，自闭的孩子配合度达不到要求，做不了。不知您在国...

这里的OT和PT是接受孩子的，不论孩子程度如何。孩子程度差，那他们就应该想办法让孩子配合啊？！

BertMom

下面引用由[U]kwenma2[/U]发表的内容：

这会儿出去度假三天，到森林公园去，租了大house，和小有，小w两家。今天计划带小K爬山。

真羡慕你们能几家朋友出去同游. 也想带哥哥出去旅游, 外出旅游DIET怎么做呢?

htyuan

谢谢K妈的回复！
看来还是国外环境好啊！想想现在家长们热切期盼，各媒体大势呼吁全社会要对我们的孩子宽容、接纳；可就在我咨询的市立残疾人康复中心，连他们那里还对自闭有歧视，都不接受我们做治疗，您说我们对外面的、常态的社会还能有什么指望呢！

kwenma2

下面引用由BertMom发表的内容：



真羡慕你们能几家朋友出去同游. 也想带哥哥出去旅游, 外出旅游DIET怎么做呢?

如果你定的旅店是带厨房的，那就解决了，像全美连锁的AMERICASTAY啊那些店都带厨房，你搜一下，确实很多连锁旅店都带厨房，不一定是度假村。如果没有，但是是开车出去几天，带上大COOLER，里面放很多冰(任何地方都可以买)，然后放上一些你做的菜，或者生的冰冻的蔬菜，不需要你洗的，然后带上蒸的那种电饭锅，大不了，买一个小的微波炉，那你开车到任何旅店都不愁了。

kwenma2

下面引用由小城故事发表的内容：

小K已经被开除出自闭圈了。

还没有，还没有，还在门栏边，还得在这里呆着。[EM15]

云鹤

在门边，就临近了，就可以走出去了，风景外边更好，但外面世界也是很复杂的，就怕一时也不适应。当然，从不适应到适应，须是如此的。

kwenma2

下面引用由云鹤发表的内容：

在门边，就临近了，就可以走出去了，风景外边更好，但外面世界也是很复杂的，就怕一时也不适应。当然，从不适应到适应，须是如此的。

谢谢哈，字字珠玑啊！[EM41]

云大哥最近常常半夜出更，是不是又喝酒了？注意身体啊！

kwenma2

KAREN刚好又写了小K的IEP GOAL:，是关于社交方面的。
In terms of continued goals to work on, these include the following

Social Goals:社交目标

Expanding K’s friendships both in number and depth.  In IEP terms I would recommend including a goal such as the following:

1. K will develop close friendships with at least 4 children in his grade as evidenced by he and the other children chosing to play with each other at recess, to sit with each other at lunch, to be ‘partners’ etc.

2. K will become increasingly able to negotiate with peers when there are disagreements, while remaining in interaction with them, with decreasing amounts of adult support (e.g. as opposed to leaving the play)

3. K will play interactively with peers and sit with and chat with peers through recess and lunch with decreasing adult support

4. K will become adept in knowing who it is appropriate to ‘correct’ when in their behavior and what language to use, differentiating the language of children to adults, vs. peer to peer.  
     Currently he sometimes corrects peers about the rules when it isn’t necessary or socially appropriate, which can potentially alienate peers.  Further, he sometimes corrects adults in the way adults would correct peers (e.g. telling his teacher she should ‘practice that’).  He is polite and nice as he does this however this kind of subtle social atypicality is likely to be increasingly noticed by peers and will be important to help him learn to differentiate over the next year.


Additionally,  in terms of picking a class/teacher for next year, Ms. Swanson’ style of warmth, extensive use of humor, extensive natural fostering of social connections across peers within academic teaching, has been extremely beneficial for K and I hope his Team works to place him with a teacher with similar qualities next year.  It will be especially important he not be placed with a teacher who is strongly ‘rule oriented’ as K tends to become very focused on and incorporate this quality in adults.  While all teachers must be rule oriented to some extent, some have a style in which stating of rules and focus on consequences are done often whereas others have the rules more in the background underlying activities.  The latter styles is more beneficial for K at this time.

kwenma2

与学校斗

关于KAREN写的社交GOAL，我们要求加入到小K学校的IEP的GOAL里面去。但是特教助理回信说目前的GOAL已经反应了这些东西，所以她们拒绝加入。说老实话，学校的GOAL很简单，还限于与人进行简单对话上面。需不需要，肯定还是需要的，但是这不符合小K的进度和每年整个一年的发展。对于KAREN的GOAL里面关于发展友谊，关于负面评论的项目，她们要么认为没有办法衡量友谊，定义友谊，要么觉得在基本的GOAL里面了，总之拒绝得一干二净。于是我写了一封EMAIL去沟通，今天收到答复，她们同意全部把KAREN的GOAL放入到小K学校的IEP的GOAL里面去了。虽然我知道即使放进去了，她们也不见得能够WORK多少，但是这个具有法律效力的文件还是要走到。
附上沟通的书信：

这是学校特教助理的拒绝信：
Hello Kwenma,

I wanted to also respond to your earlier e-mail about K's Social goal.

In speaking with L (speech therapist) we thought the objectives in the proposed goal were subjective.  Goals should be measuable- for example how can we say he has made a friend with 80% accuracy?  How do you even define friendship? They may be "friends" one day and not the other The other difficulty is that the Speech therapists can not always be at recess or lunch with K.

Current objectives talk about K maintaining conversations with peers, negoiation skills with peers around play(where to play etc.), flexibility with play routines (These are first steps in being able to make and maintain friendships.), responding to a communicative initiation by a peer or adult(This soulds like it corresponds to the 4th objective reccommended by Karen.), maintaining eye contact and interpreting the emotion... of others.

We believe the current goals are appropriate for K and would like to keep them as they are into the fall.

I would like to speak with you about this further if you wish.  You may call me.
Have a good day and feel free to call me.

Mary
Education Team Leader

kwenma2

这是我的回信：说明KAREN的GOAL和她们认为的GOAL有本质区别，委婉地驳斥她们说很难给“友谊”下定义的说法。

Hi Mary,

Thank you very much for your efforts!

In response to your email about the social goal, I have different opinions.

The social goals came from Karen are all about the further steps of the social piece. I understand that those goals K currently have,but  those are all about the communication and interaction with peers. However, they were not specifically about the depth of the interactions back and forth, plus the friendships. The friendships from my opinions is easy to define, for example, when we interact with others, sometimes, it is only communications/interactions but without the deep affections each others. But so many times when we have friends, especially the good friends, we have affects between each others and especially emotions to share. I deeply believe that we understand how much differences between friendships and common communication/interactions. So in this case, although we can see K maybe one day play with one peer, other days play with another, but carefully observation can help us understand that there's difference from each peers he interacts. So we can see who normally he interacts more and hang around more, what they are talking more (in depth), etc...  

I understand not every day recess and the lunch time the speech therapist is with K, that is why we on the last IEP try our best to arrange K's speech therapy time one at recess and another at the lunch time. Because these two times are the most important free play and interaction time to help/observe what K's social goals. This is the piece we are working on it! So with regular time with him in this two time periods, the more the therapist can understand how much deep circles/interactions K can interact with other kids, and have more time to observe who is his friend and his friendship!

As Karen's 4th goal is more specific about how to respond to people when people make mistakes, how to express the negative opinions. This is more specific, and this happened a lot in K's school days currently. That is why we want to make it more specific as a goal.

Thank you very much for your understanding!

If you still have different opinions about the social goals, we would like to have an IEP meeting as soon as possible to address this before the end of school. We do not want this to be left until next semester since this is the most important piece for K's IEP so far!

Thank you very much again!

Best,
Kwenma

kwenma2

今天的同意信：

After further discussion with the speech therapist, we will be adding the objectives suggested to K's IEP.

Mary
Education Team Leader

Ean妈妈

感谢K妈提供这些往来信件，对我们将来很有借鉴的意义。K妈的沟通能力没的说的！

kwenma2

关于低肌肉张力

JJMUM：K妈，我用的量(COQ10)一直只有你给小K的一半。但俊还是很明显的低肌肉张力， 我很困扰。我准备给他加量到小K的量。但我担心这药物会不回很难撤了。小K还是照旧的用量吗？

K妈： 在你需要的时候就得用，用它不是仅仅用它来帮助低肌肉张力。这里的目的是通过用它来唤起肌肉的能量，此时加入大量的运动锻炼来主动提升肌肉和生理情况，所以 COQ10，我的感觉应该是一座桥梁的作用。最终是自身机能的恢复，从而能够撤调补充剂。当然除了COQ10还有其他办法，但是COQ10比较基本和安全，所以我推荐。小K去年的低肌肉张力方面的CARNITINE的指标只有8(正常值是24-72吧？)，可见他多低了。我前两天收到他的检查报告，这次落入正常值，为36了。怪不得今年开春以来觉得他能量增加了，做MONKEY BAR可以最多做到120个了(我鼓励的情况下)。那天自己在学校的课间活动做了60个。要知道去年入冬时只能做不到3个。

JJmum

谢谢K妈的指点！