与妈妈们一起努力: 在美治疗记录

Charlesriver

谢谢大家的夸奖!

我不是个用功的妈妈, 很惭愧. 本来应该做得更好些,读更多的资料, 多写些,可自己太贪玩了些,以后要多努力.

上面的那些信息都是建立在很多的妈妈们多年的累积和无私的分享的基础上的.所以,我们今天才会站在她们的肩膀上, 给孩子带来更多的进步.

另外补充一点, 其实在美国这些的小于五岁的孩子, 重金属汞的来源已经是不大可能从疫苗中来的了, 而基本上都是来自于妈妈的汞牙. 所以, 补过汞牙的妈妈, 可以给孩子做个头发测试看看.

kwenma2

小J妈妈的第二条是的确生动发生在我身上，不过是30年前我妈妈给我理发。那左右老剪不齐，剪到左边耳朵处，劳模还要再帮我修，吓得我怕她修到我右边的太阳穴处，赶紧向老爸求救，得以安全＂着陆＂。自此以后，都是爸爸帮无剪头了：-）[EM15]

下面引用由小J妈发表的内容：

Ean妈妈的理发手艺肯定高,我现在的水平是剃不太光的光头.说说我给小J爸爸和姐姐理过的发吧
1.刚来美国时,不是穷吗,大家都是买工具自己理.有一次,我给小J爸爸理,还不太会用电动的那个,呼的一声,对...

kwenma2

下面引用由Charlesriver发表的内容：

谢谢大家的夸奖!

我不是个用功的妈妈, 很惭愧. 本来应该做得更好些,读更多的资料, 多写些,可自己太贪玩了些,以后要多努力.

上面的那些信息都是建立在很多的妈妈们多年的累积和无私的分享...

是啊，该表扬就表扬，小Y妈是越来越努力啦[EM14]

Charlesriver

下面引用由kwenma2发表的内容：

是啊，该表扬就表扬，小Y妈是越来越努力啦

哈,每天和你在一起, 不努力都不好意思啊.

Charlesriver

写点有趣的.

小Y有五个语言训练师, 水平都还行. 刚开始的时候我还试着去协调她们给小Y训练的步伐, 发现难度太大, 我自己又不懂, 还得自己先弄明白到什么时候学什么, 所以我就完全放弃了. 她们爱怎么教就怎么教吧.

但是经过一年来看, 这些老师其实大致的步陬都还差不多.比如说上两个月, 她们都在教小Y大声说话. 好象成果显著,虽然我自己认为是身体治疗方面的转变占主要的原因, 老师们也功不可没.

每个老师教的方法都不一样:

1. 学校的老师用IPAD: 里面一个好玩的软件, 你说什么,他就跟着说什么. 自然小Y很感兴趣;
2. 家里的老师用IPHONE: 有个声音测量的软件, 根据声音大小去几档, 象开车一样, 小Y也很激动;
3. Jenn用一个录音的小玩意儿: 手一拍, 就录音, 再一拍, 就放出来. 带他看froggy的书.  froggy的妈妈总是扯着嗓子叫:froooooggggggy.小Y就跟着大叫froooooggy.
4. 另一个老师用的打印出来的: 不同颜色代表不同的音量. 告诉他在哪中情况下用多大的声音说话.

如今他说话的声音大了很多.以前说话是象蚊子声音啊.

不过晚上睡觉前讲故事, 如果我把声音压低, 他也会跟着把声音放低, 基本上是跟着我的声音来的,还知道调节.  

Charlesriver

IPAD 特殊教育应用软件

Some of my favorite Apps for 3yrs-1st grade and special ed are:
For phonics: Word Magic, ABC Phonics, Pocket Phonics

For artic: ArticPix (watch for sales!  Sometimes you can get it 1/2 price.  There is a lite version you can try before you buy.)

For animal sounds/cause and effect type app:  I hear Ewe, Peekaboo Barn

For colors/shapes:  A Bee Sees, LearnL Colors and Shapes, Baby Flash Cards, Teach Me Colors (also some good cause/effect)

Feelings:  How are You?(book),  VolaFriends,

ABA and vocab:  search "ABA" there are a lot of apps!,  Learn to Talk, Verbs with Milo, Prepositions with Milo

General PreK, K and 1st grade curriculum:  The "Teach Me" series is all great!  Smarty School has an assessment-type report that is good documentation.

Matching/Memory Games:  Preschool Memory Match (has levels from easy to super-hard, and really neat visual-auditory rewards for the kids at the end of the game),  JirboMatch

Oral Motor:  I just got "Smart Oral Motor"  I'm not sure I love it, the animal that demos the motions is a duck, so the movements don't exactly translate from a duck-bill to a human mouth too well in my opinion.  I've just used it with one PreK student so far and he thought it was pretty cool though.

For AAC:  I've used ShoutOUT, Tap To Talk, and Talk 4 Me.

For Signing:  I prefer Signing Time apps to Toddler Sign, just because there are more signs on Signing time.  I started with Toddler sign because I liked the animated kid models and video, but there are just not enough signs to really build a vocabulary.  I can't remember how  much the Signing Time apps were, but the videos are good in my opinion and in addition to the video, for each sign, there is a drawn pic of the word, a still picture of the word and then the video.

Questions:  Kiddie Questions (which is a little too hard for my younger students), WH Questions from Smarty Ears (I like this app, but think they could do better with the pictures, some of them are warped.)

Misc:
1)  SLP Age Calc (so easy!  Love it!)
2)  There are a lot of children's favorite books and more are coming everyday.  Just search for your favorite books or favorite author.   Sometimes at the end of the session while I am finishing with any documentation, I'll start a story that may relate to the vocabulary or sound that we worked on that day.  Gives me a few minutes to finish up, and my (younger) students love it.
3)  Yes, for a couple of my older students I will let them work for a few minutes of Angry Birds or Cut the Rope.  I really don't understand why they like the games so much, but I figure it's a good reward and both games do require some degree of reasoning to be successful.
4)  Kids Clock is a learning to tell time app.  I don't have many kids that are at that level, so I don't use it much, but it's free!
5) Seasonal games:  I have several games that relate to Christmas, decorating a Snowman, a Pumpkin decorator that I can use with the appropriate vocabulary.  Plus the decorating usually has some degree of prepositional or place orientation like "the star goes on the TOP of the tree" etc.
6)  Ladybug, Ladybug is a song/video that has some good secondary body part references.  Plus it's a cute little song.
7) iStudy IPA:  if you're rusty on phonetic alphabet this helps.
8) Deep Powder Software has an app that has most SLP related terms and their definition.
9) Teachers Pick:  If you need to pick randomly from a group of students, this will do it for you.
10) 3D brain:  I  just think this is super cool!  I wish I had it when I was in school.  Shows drawing of brain, labels parts and functions.  You can spin it around to see it from any direction...I just am facinated by it!
11) RadSounds by RJ Cooper.  Use a switch to activate iPad to play chosen music (either from a personal iTunes list or from the preset music)  I just got this and haven't had a chance to play with it much yet, but I'm excited about its potential.
12) I love the Kindle app!  Recently I was at a conference and the speaker kept referring to a specific book.  I was able to quickly search for it and download it.  Then I bookmark specific things she was talking about so I could go back and read further without having to concentrate so much on furiously writing everything down.  Plus I have my personal reads on there for when I'm waiting on one of my own kids to get finished with practice, etc.

JJmum

下面引用由[U]Charlesriver[/U]发表的内容：

IPAD 特殊教育应用软件

Some of my favorite Apps for 3yrs-1st grade and special ed are:
For phonics: Word...

我们家那个也是IPAD迷, 谢谢小Y妈妈的资料.

小城故事

谢谢Y妈！ 我们家那位就喜欢在ipad上打游戏， 这下可以再挖掘挖掘了。

Charlesriver

不谢不谢! 这些都是小Y的老师送给我的. 那些老师都五六十岁了, 接受新的时尚事件比我快多了. 我总是不大喜欢IPAD,原因很可笑, 就是我一直都喜欢大屏幕的手提电脑, 我家里用的是15英寸的.

kwenma2

你的头发测试好像不是DDI实验室做的？Andy的头发测试解释是根据DDI的测试而言的。另外发图像才容易看数据落入左右白，黄，绿，红色区域。

Charlesriver

就象K妈说的, 你的结果不是DDI测试的结果. ANDY 的结果统计都是以DDI的标准结果做样本的.

你孩子的汞表面上看起来是没超, 所以需要看下面的有益元素的分布来判断是否汞超标了.而下面的元素分布我们没有办法判断的. 所以, 不能判断汞是否超标. 那么其他的有害元素的超标与否也不能判断.

很抱歉.

Charlesriver

准备这个周末给小Y上ALA (alpha lipoic acid). 我随便搜了这个中文的网站出来给大家看看:
http://www.springsunday.hk/index.php?gOo=goods_details.dwt&goodsid=387

小Y的外婆有糖尿病, 每天吃的复合维生素里面就含有50mgALA, 吃了六年了. 她每天的血糖控制得还好,没吃任何的降血糖药,早上空腹一般都在95-100之间. 当然她主要是靠饮食控制的, 我说这个, 意思是ALA至少没吃明显的坏作用.

看起来ALA还象是个普通的营养补充剂.不过, 我非常紧张. 因为,这是生物疗法快中最重要的一样药了.而且要用很长的时间, 至少一两年吧. 所以, 这个要对小Y是否有效果, 关系重大.

在给孩子吃药之前, 我给自己列了些问题单子, 需要全部解决了才能放心地给孩子用药.

现在的情况是小Y已经用过几轮的DMSA了,首先我需要解决的两大问题是:
1.什么时候该给孩子开始吃ALA?
2.直接给孩子同时吃DMSA和ALA, 还是吃几轮ALA 后再吃DMSA?

DMSA chelate身体血液里面的铅和汞,ALA chelate 脑内的汞和砷.必须先给孩子吃了几轮DMSA后, 再上ALA.

其他的的问题, 我按照类别写出来, 给大家参照用:

1.关于药的相关知识的了解:
a.为什么要用ALA?
b.ALA有什么用处? 会在我的孩子身上有什么用处?
C.ALA有什么副作用? 我能否接受并控制这副作用在可接受的范围之内?

2. 药的具体使用方法:
a. 用量是多少?
b. 采用何种给药方式, 口服,栓剂,或者皮肤用药? (以前给小Y DMSA是栓剂,我现在在认真考虑换成口服).
c.如果改成口服,放在什么样的液体里面吃进去(水, 还是果汁,何种果汁,会不会引起酵母菌?)(这点很重要. 比如说DMSA是酸性的, 需要放在酸性液体里面, 否则会严重影响药效.所谓细节决定成败.)
d.使用时间:这是最重要的. ALA要求每三小时一次. 我们能否做到. 孩子能否配合. 晚上他拒绝吃怎么办.家长因此而失败的列子也不少. 为次,我们已经开始提前训练他睡着时吃果汁了.

3.用药的那三天当中出现的问题:
a.在什么情况下需要停止用药? 比如说体温上下乡升到多少度就必须停止用药.
b.小孩最坏的反应情况会是怎么样的? 我能否接受?
c.当中如果出现行为问题怎么办? 怎么判断是酵母菌还是过药不耐受?

4.用药后的措施:
a.如果出现严重的酵母菌起来怎么办?
b.如果出现细菌和病毒问题怎么办?
C.如果一次没见到明显进步效果, 怎么办? 还继续多少次?
d.理想的效果应该是怎么样的?

这两周我都在反复阅读思考这些问题. 具体的答案我都不写了. 因为妈妈用三分钟读了答案和自己用上三天的时间找答案, 效果是完全不一样的.

做生物疗法一年来, 我最深刻的体会是父母一定要学习学习再学习, 思考思考再思考.成败基本上在于家长. 比如说小Y这次用ALA, 我都没跟他的医生说过. 他的家庭医生很好, 但对此一壳不通, 不过他自己承认自己一点都不懂. 小Y的DAN!医生也是顶尖的,可他没有时间和精力象我们家长一样去关注每一个细节. 不过, 他还是开明的,也充分尊重家长的意见, 现在用药DMSA的量, 都是我们家长说要多少,他就开多少.  

Charlesriver

小家伙现在比较有趣了. 这两天晚上睡觉前, 会大叫:妈妈, 趴下. 然后妈妈就乖乖地趴在床上,他就开始给妈妈按摩了.先用巴掌揉一百下, 然后再敲一百下. 爸爸说他还挺专业的样子.

这是因为我经常给他按摩, 他就学会了. 我只会说中文的:趴下. 英文趴下不知道怎么说的恰当呢.

小J妈

我家小J昨天晚上说:lay down,自己就趴下了,小子晚上都是趴着睡的.

Charlesriver

下面引用由小J妈发表的内容：

我家小J昨天晚上说:lay down,自己就趴下了,小子晚上都是趴着睡的.

小J真聪明! 非常看好小J呀.

Charlesriver

Robert MacNeil Returns to PBS NEWSHOUR to Report on Autism Today

http://www.prnewswire.com/news-releases/robert-macneil-returns-to-pbs-newshour-to-report-on-autism-today-118854119.html



"I've been a reporter on and off for 50 years, but I've never brought my family into a story … until Nick," MacNeil said, "because he moves me deeply."

PBS 这个月系列报道ZB家庭, 其诊断和治疗,训练.

我刚巧认识里面的主角NICK一家, 她们给了我们很大的帮助. 非常热心的一家人.

相信这一系列会让整个社会更加重视和了解ZB.

大家有时间可以看看.

BBMom

下面引用由[U]Charlesriver[/U]发表的内容：

Robert MacNeil Returns to PBS NEWSHOUR to Report on Autism Today

http://www.prnewswire.com/news-r...

I found this as well. Will watch it.

I have made appointments with Ladders and Children's Hospital for speech evluation.  Thanks for your recommendation.

小J妈

看见小Y都给妈妈按摩了,真是个懂事的好孩子,我家小J什么时候才会知道心疼妈妈呢?
小Y妈,我也想给小J按摩.你是怎么学的,有什么书和DVD吗?