与妈妈们一起努力: 在美治疗记录

宝贝贝

transfer factor by 4life is the best
milk thistle, kirkman labs has it.

cherry07

Thanks, 宝贝贝.

abear252

下面引用由[U]Charlesriver[/U]发表的内容：


谢谢Ean 妈妈!

我们在第一次看医生的时候做了很多的测试的. 我的要求是把所有能做的都做了. 医生还反复跟我强调了很多是不能保险报销的.抽血了二十多管吧, 检查项目上百项.

我看有...

Y妈，如果方便的话，也把检查项目给我个email吧？
abear252@126.com
谢谢！

Charlesriver

小Y这一个月来表现都好. 下面是他的地板时光老师在八月底给我发的email中阐述他的进步的:

emailing 2 video clips via *******- if they don't come out I'll put them on a flash drive for you -

The first one is short:

Yao was pretending to cook so I wrote with one word on each card "Yao is cooking", which he read, pointing card by card, smiling.  Then I wrote Slow and Fast as he likes opposites so much.  I put SLOW and he read "Yal is cooking slow" and smiled and looked up.  So I told him "Yan COOK FAST!" and I switched the cards so it said "Yao is cooking FAST!" and he said "SLOW!" and looked up and smiled and switched the cards back.  We had done this several times before I managed to get the camera out so by the time its on camera he is still doing it playfully but is starting to move on.  

Several areas of progress are apparent in this little clip:

1 - He is reading well and using this to 'practice' pronouncing words more clearly ("Yao is cook-ing slow" he can say very clearly as he reads it).  I think the reading is really helping both his articulation / clarity of speech, as well as his capacity to use longer sentences.  I write words that directly relate to what he is doing so he is more likely to get the meaning of them and he is very motivated for this.  If I forget or try not writing he'll say "Cards" "Marker" "Make 'x' - whatever the word is that he is doing.

2 - He is able to have a playful 'argument' with me and find this funny, laughing and making wonderful eye contact as we 'argue' about fast vs. slow!  This is the beginning of 'theory of mind' - of his knowing I want something different than what he wants.  It is also such nice playful 'teasing' back and forth.  He knows I am playing and not really upset and he is interested in watching my emotional reactions when he switches the 'fast' to 'slow'.

3 - His speech is more spontaneous and his voice volume much more typical during this sort of play than it used to be.  While he still struggles to get the words out correctly he is trying to talk all the time and so getting lots of practice and improving quickly.

4. His affect is so good - he is doing so much laughing and eye contact - so much more socially engaged than he used to be.  This of course is the most important and wonderful area of development that all others really depend on - once kids are happily socially engaged they are much more motivated to communicate/talk/play socially etc


The other clip is the 'map' play -

Unfortunately i 'cut off our heads' in the video clip but you can certainly hear his laugher and words and see generally what he is doing - what you can't see is his wonderful eye contact and studying of my face throughout which is very very nice and again solidifies the foundation of social- emotional engagement which is what all other communication is based in.

We have been doing this sort of play for several sessions now with many variations and expansions each time.  He typically starts by asking for tape to make a road and we negotiate big piece or little piece.  I can usually turn this into a playful interaction - if I make it a little piece i may put it on my face or shoulder and he looks at me and laughs as he takes it off.  If he asks for a pice of tape and I give him a little one he'll correct me in a nice loud assertive voice "BIG piece".

Then he has been asking me to make "Yao House"  I write it then he asks me to draw it.  This time I drew the house but didn't fill it in.  He said "Door and Windows!" spontaneously immediately, waiting for me to fill in those parts.  I came up with some of the other cards to draw such as Kevin's house, hotel, and he came up with others (school; Micky Mouse House).  Once we had the map set up and 'drove' to a few places he wanted me to add things like 'parking lines' with numbers (he may have gotten this idea from Kevin and Bing Ying a few months ago) and he told me what numbers to put in.  He is coming up with more of his own ideas which is wonderful progress.

Then what was really fun was I pretended to get 'lost' and go the 'wrong' places. So i would say I was driving to "Yao's house' but make my car go to Kevin's house.  He thought, as most kids his age would, that this was very funny and he corrected me often "No! Over HERE!"  What was also so nice to see was he delight and sharing of this delight with me with eye contact and big laughs!  he was laughing so hard it was hard for him to talk!  His spontaneous language increases when he is in this nice happy state and he continually corrected me - and then looked expectantly waiting for me to make more mistakes!  

So overall his gains are substantial in

pronounciation of words

length of sentences

use of spontaneous language

   to make requests

   to comment/narrate

   to participate in playful pretend 'games'

His pretend play

His social engagement

His affect and sharing of happy affect with smiles, laughing and eye contact

The number of back and forth social 'turns' he takes as he plays

these are all areas to continue to work on but all areas he is making wonderful gains with.

Charlesriver

昨天, 又去上地板时光课了, 训练师今天就给我把vedio 整理了,挑了点她露面不多的放在网上, 让我看.

在刚刚一分钟的时间里, 就有八次很好的目光对视, 语言也都自发, 用得适合及时.老师的评价这次比较简单:

I'm also emailing 2 very short clips via *****to you just so you can see how fantastic he was - he has been so playful lately and his speech as well as his pretending have also improved a lot.  I am especially pleased with his laughing and eye contact as a sign of how much more connected emotionally/socially he is now.

今天下午, 我在办公室里面反复看八月份的和今天的录像, 真是感慨万分啊.

今年三月份的时候, 小Y还不会主动叫妈妈, 今天已经会自己说" 我喜欢爸爸和妈妈"了. 三月份的时候, 在这个训练师的办公室里面, 一个小时他都不会抬三次头看人, 只顾自己玩, 现在能全程和训练师语言目光交流了.

Charlesriver

sorry, mistake

Charlesriver

跟一些妈妈分享了小Y的这些Vedio.

请注意这是地板时光训练课, 所以目的不是教他认知, 而是让他能和训练师开心地玩在一起, 笑得次数越多越好. 慢慢地让他觉得和人玩很有趣, 从自闭的状态中走出来.

他现在和训练师的感情很好. 每次一见面, 就会冲过去抱她的. 然后上课时, 都不准我进去, 要知道平时是无时无刻地粘着我的呢.

训练师写下句子让Y 念, 并不是让他学会那些句子. 而是Y的特点是擅长认字阅读, 而且特别喜欢认字. 所以他的语言训练师都建议写下来, 让他理解, 学着说. 这位地板时光训练师还特意去和他的语言训练师观摩讨论过, 所以用这种方法让他engage,开心, 顺便学点东西.

所以, 那些故意开错地方, 做些很silly的事情, 都是为了吸引Y的. 因为Y喜欢这样.

Charlesriver

平时在家里,觉得小Y进步很大. 可是一走出家门, 和身边正常的小孩一比较, 那简直是天差地别啊. 每次都让我大受打击.

特别是那些口齿伶俐的小女孩, 一个个才两岁多, 就啥都懂了. 昨天两岁零一个月的小女孩就会说: 红太狼是灰太狼的老婆. 让我大跌眼镜. 我怎么觉得我自己都很大了才弄明白这些的呢.

柴火

小Y真的很不错，以后一定会越来越好的。看着那些silly的片断，我就想这可是小火炉的最爱呀！

binfeng2000

Vedio应该发给我一份吧?这可是我小老乡的.

Charlesriver

下面引用由binfeng2000发表的内容：

Vedio应该发给我一份吧?这可是我小老乡的.

已发, 请查收.

sorry呀. 我就想着那些妈妈了.忘记了这位爸爸了呢.

小城故事

小Y真的很棒， 看他在video里笑得多开心啊， 就像我跟你说的， 眼神， 投入程度都太好了。妈妈真应该高兴， 小Y进步这么大。

Charlesriver

八月份的皮肤过敏

我是到九月初才发现. 后来看他的这个八月底的录像的时候, 他已经开始过敏了. 总是用手去挠肚皮.

九月初发现的时候, 在嘴角长了几个小小的红点, 被爸爸发现了. 当时正好在外面旅游. 那时分析的是, 有四个可能:

1.买的无麦面包, 带有干果. 可能干果过敏. 立刻就扔了.

2. 加了釉子籽精华素, 可能对这过敏. 也停了.

3. 把N*****药的量从5mg加到了10mg. 我觉得这引起过敏的可能性不大. 后来问了他的DAN!医生, 说不大可能由加量引起过敏.

4. 我觉得最大的可能是: 许多的补充剂是在三月分买的, 到了现在快半年了. 日子一久, 难免会变坏掉. 特别是V C 这种. 所以,回来后我把所有的老的药全扔了, 买了新的.

采取这些行动后, 小Y的过敏就消失掉了.

现在看来, 是八月份就慢慢开始皮肤过敏发痒了, 那么应该是最后的一种可能性了.

所以, 希望妈妈们也注意, 不少的补充剂, 日子久了, 是会变坏的. 特别是打开了盖子以后.

小城故事

谢谢Y妈的提醒， 我们最近也买了一大堆， 得抓紧时间，不行我和小城爸爸也跟着一起吃算了。

宝贝贝

Do you keep them in the fridge? all my supplements are in the fridge once opened. I have supplements bought a year ago. still are fine.

Charlesriver

请推荐好的网站

得仔细地教小孩的语言了, 以前以单词和特简单的单句为主, 现在得开始些社交问题, 和what when where why...之类的问题,以及复杂点的句子表达了.

我想给小孩买些这方面学习的卡片, 或者软件. http://www.difflearn.com/  我只知道这家店, 里面的东西有点贵的,也不知道好不好用. 请问有没有好的网站可以推荐的? 如果需要自己打印也行, 我彩色打印以后过塑就可以用了.  

谢谢!

kwenma2

下面引用由Charlesriver发表的内容：

平时在家里,觉得小Y进步很大. 可是一走出家门, 和身边正常的小孩一比较, 那简直是天差地别啊. 每次都让我大受打击.

特别是那些口齿伶俐的小女孩, 一个个才两岁多, 就啥都懂了. 昨天两岁零一...

抱抱Y妈，别受打击，我天天看着对比，心里那个难受啊，不亚于你。咱们两个同命相怜啊！感觉这些天生的东西我们真的很难给他们补上，目前我们要做都是婴幼儿期欠缺的东西，那天我还跟karen谈起这件事情。

Charlesriver

自己看着自己的孩子, 总觉这一年进步很大. 从不会看人, 到现在会追着看, 从不会说话, 到现在能基本交流. 特教老师和周围的家长也都夸他脾气好, 乖.

可是, 可是, 和同龄的孩子比起来, 简直是惨不忍赌啊.

今天, 我早上和他的语言训练师见面谈了半个小时. 很不错. 本来我对这个训练师不满意, 这也是对小Y学校里面唯一不满意的地方. 我告诉了他的BCBA, BCBA 转达了我的看法后.  语言训练师开始改变了, 开始做各种的卡片图片给小Y上课, 开始写字帮助小Y理解, 主动和我交流.其实, 我知道是训练师年龄大了, 有了自己的教学方法, 要她接受新的方法和思路不是件很容易的事. 幸而她积极地表示愿意改变了.

中午, 去学习观察小Y吃中饭. 懒懒散散的, 吃一口没一口的. 倒是总是对老师吃的食物感兴趣. 小Y的中饭的确是单调了, 但是也没办法啊.

下午, 接着看小Y去融合教室上课. 这下差距就出来了. 小Y这个在特教班上和学校都说是最听话的孩子, 和正常小孩一比, 简直是天差地别.

这个融合教室, 说实话, 好的超乎我的想象. 十个正常的孩子, 三个老师管. 三个老师其实也都有过特教背景的. 两个小Y班上的学生, 各有自己的老师跟着.整个教室和课程也都是高度的结构化了. 不管老师说什么, 做什么, 都有相应的图片或者文字来帮助理解. 我觉得大部分的内容小Y都能理解了.  差别就是那种活力和表情. 小Y现在的特点是在家里和小的单独的办公室里, 人是活的. 一到外面的大环境去, 人就蔫了. 说话声音小了, 表情也呆板了.

小朋友都坐在地毯上上课, 就他有一个特殊的椅子, 放在地上的. 靠背有弹性的那种. 他悠然地坐着, 翘着二郎腿,腿都翘得比头高了,舒服得不行的样子. 我问老师为什么给他椅子, 说是他在地上坐久了会累. 这的确是事实的. 典型的肌无力啊. 不过他的老师都看得惯他的坐姿, 我很看不惯呢.

其实说小Y上课捣乱不听话, 也不是. 他能一直都坐着,听老师的,偶尔回头看我们笑笑. 老师问他简单问题, 也能回答. 但是, 一看就知道是个特殊的孩子. 我想是他东倒西歪的坐姿, 说话的蚊子声音和什么都慢八拍的表情吧. 里面有一对一两个小朋友互相交流的时候,那个小朋友努力地靠近他, 和他说话. 他一脸爱理不理的样子.

差距还是太大了. 得继续多努力啊.

不过, 好的是问小Y在学校最喜欢谁, 竟然就是这个才上了几周课的融合班的主课老师. 老师非常爱小朋友的样子, 不 过在那么多的聪明伶俐的小孩面前, 要老师喜欢上小Y, 难度非常大,能不嫌弃就行了.   

Charlesriver

昨天发完贴, 就收到了妈妈们的鼓励邮件, 心中暖暖的.

虽然知道这是个长期奋斗的过程, 特别是小Y这种严重又典型的,恢复之路何其漫漫啊.

下午就奔赴加洲南部的long beach去开全美一年一次的DAN! 会议. 周日晚上熬夜回来的六个小时的飞机对我来说的确辛苦,幸亏苦中做乐的是能和四位网上的妈妈聚会了. 权当作朋友千里来相会之行吧. 心里也开始激动起来了.

同时, 在K妈的大力监督之下, 我订了十一月份去wangintgon DC附近的地板时光年会. 花销不菲, 但相信会物有所值的.

再过几天就是小Y的四岁生日了,在六岁以前的黄金恢复时间里, 只给我剩下两年的时间了. 真希望能再多点时间啊.

Charlesriver

谢谢小P妈妈!

生命中总是会出现意外的惊喜和感动. 有时侯我常想, 当一个特殊孩子的妈妈孤军做战的时候是深刻的孤独和痛苦; 两个特殊孩子的妈妈一起携手并肩的时候, 大部分的痛苦似乎消失了; 而三个特殊孩子的妈妈相依而行的时候, 生命中已经平空多了许多的欢乐和温暖.

这个周末就是小Y的四岁生日了. 而我却远在千里之外. 这也是第一次小Y真正明白生日的意思,所以对他来说, 是非常特殊和期待的日子.

幸亏小P妈妈帮我填补了心中的遗憾. 她主动给为小Y办个聚会, 让大家相聚庆祝小Y的生日. 这是我想都没想过的. 真心谢谢你! 等小Y长大成人, 我会告诉他这个特殊的生日和曾经收到的深情和祝福!