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61#
发表于 2007-10-3 18:17:07 | 只看该作者

re:对我儿子来讲,最好是让他先只讲一种语言,...

对我儿子来讲,最好是让他先只讲一种语言,但是对我女儿,我们是希望她能从小学中文,但是事情并不如愿,小的那个看她哥哥的样,两人坚决抵制学中文,软的硬的都不吃,我们也没办法了.
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62#
发表于 2007-10-3 23:02:22 | 只看该作者

re:FYI:http://www.eli...

FYI:
http://www.elimautism.org/leadbbs/Announce/announce.asp?BoardID=5&ID=200196
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63#
 楼主| 发表于 2007-10-13 11:03:04 | 只看该作者

ABA , Floortime

ABA,Floortime,到底哪个更适合孩子?我自己最近也在思考这方面的问题。



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64#
 楼主| 发表于 2007-10-13 19:44:48 | 只看该作者

ABA PROGRAMS

WEN‘S Current programs

Motor Imitation
Following 1-step Instructions
Eye Contact
Object Imitation
Requesting Help

Maintenance programs

Preference
Termination

开始ABA训练5个月了,就教了这么点。对比了一下儿子与别人的ABA PROGRAM(如下),心里真的很郁闷。

下个星期一定要和ABA沟通,希望他们能够增加训练内容。


------------------------------------------------------------


John Wade’s Program


The following is a list of the UCLA programs that were taught to John
beginning in February 1994 and ending in December 1995.  Initially, John
worked with Jane Germ at American River Speech for 2-3 hours a week for 9
months 1:1 and we (John’s parents) recieved parent training for 6 months
prior to starting the Lovaas Program in August of 1994.  We started a
home program with 6 tutors who worked 40 hours a week and a UCLA senior
therapist 4 hours a week who all worked under the direct supervision of
Dr. Greg Buch, the Clinic Supervisor from the Lovaas Institute in Los
Angeles.  John also began working with the School District Speech
Pathologist in August 1994 through February 1995 2 hours a week 1:1 and
then she left for maternity leave and we started back up again with her
in August 1995.  She worked on generalizing what we taught him in program
at home.


John was in a preschool 40 hours a week before we started the program and
we removed him in July 94 to work with him at home (I worked full-time
and he was in full-time daycare since 8 weeks old).  John started his
transition back into pre-school starting in March 1995 (six months into
program) with the Phoenix Preschool and then he switched to the School
District Parent Participation Preschool Program in June 1995.   In
September 1995, we quit the UCLA program and started John’s transition
into kindergarten.  He went to the District PPPIP class two days a week
and to a kindergarten class 1 day a week, initially.   Each month we
added another day of kindergarten and in January 1996, he was enrolled
full-time and graduated out of PPPIP.  His school district is a year-
round school and he is off-track October 30th-November 27th, February
16th-March 24th, and June 29th-August 7th.  We tutored him at home 10
hours a week during off track time.


School Transition (Full Inclusion Plan)
Currently John goes to Kindergarten with an aide M-F from 11:20 - 2:50.   
The District Speech Pathologist works with him 3 times a week.  She
visits his class once a week for an hour and runs a language workstation.
She also pulls John out of class and works with him 1:1 or in a small
group.  He receives Resource help and is in Adaptive PE and Occupational
Therapy.  We have a behaviorist who consults with his teacher and aide to
help them set up motivators for John in the class room.  They have also
received training on how to handle John behaviors in class when they
occur.  John will be repeating kindergarten this fall with the same
teacher and a classroom aide initially.  The behaviorist will be there
the first day of school, but will most likely not be needed the rest of
the school year.  The speech therapist will visit his class once a week
and run a group language lesson and will not be pulling John out for any
more services.  The Resource Specialist is not really needed at this time,
because he can do the work in kindergarten, but starting in December,
she will be preteaching him some 1st grade work and preparing his 1st
grade teacher for full inclusion training.   Basically, he will be fully
included full time and all of the supports will come to class when needed.


The following is a list of the UCLA programs which are listed under the
months that they were introduced to John.  John usually worked on 10
programs 4 times a day each week and as he mastered one, it would be
moved into maintenance and replaced by a new program.  He worked on all
of his maintenance programs at least once a week to ensure that he
retains the information that he had learned.  Since August of 1995, John
has not worked on any maintenance programs.   


The tutors took daily tallys on what John did each day with each program
and wrote down what behavior problems they encountered throughout the day.
  John's entire year of 1994-95 is in a daily diary with checklists of
all the words that were taught to him within each language program.


Many of these programs have up to 10 sub-programs within them, for
example:  Counting.  There is "Count out Loud to 10", "Counting Objects",
"Selecting a certain number of objects from a group", "Recognizing
Numbers", "Math Worksheets", etc.  Only the Main Header is listed in this
document.


February 1994 - Jane Germ
Verbal Imitation - Sounds
Verbal Imitation - Words                 
Receptive Object Labeling                 
Non Verbal Imitation                     
Matching                                 
Expressive Object Labeling               
Receptive Commands                       


March 1994 - Jane Germ
Rote Conversation                        
Verbal Imiatation - Phrases               
Puzzles                                   
Sorting                                   
Conversational Phrases


April 1994 - Jane Germ
Getting Dressed                           
Grouping                                 


May 1994 - Jane Germ
Receptive Colors                        
Expressive Phrases                       
Colors                                   
Receptive Actions                        


June 1994 - Jane Germ
Expressive Action Labels                 


August 1994 - UCLA Workshop (Start of 40 hours week at Home)
Categories                              
Shapes                                   
I See                                    
Block Imitation                           
Drawing                                   
Receptive Shapes                        
Play Skills                              
Self-Help                                 


September 1994
I Have                                   


October 1994
Potty Training                           
Prepositions                             
Letters                                   
Imitative Play                           


November 1994 - UCLA Follow-up #1
Statement/Statement                       
Emotions                                 
Rooms of the House                       
Same/Different                           
Counting                                 
Pronouns                                 
Big/Little                              
Ball Play                                 


December 1994
Brushing Teeth                           
Three Word Phrases                       


January 1995 - UCLA Follow-up #2
Preschool-Prep                           
Look                                    


February 1995
Circle Time                              
I Want                                   


March 1995 - UCLA Follow-up #3
Trips                                    
Rollerskating                             
Wait                                    
Preschool Transition                     
Peer Play                                 
Be The Teacher                           
Tell me about the picture                 


April 1995
Riding Bike                              
Zoo-Phonics                              
Past Tense Verbs                        
Random Sentences                        


May 1995 - UCLA Follow-up #4
Games                                    
I Don't Know                             


June 1995
Statement/Question                       
Worksheets                              
Functions                              
Occupations                              


July 1995
What Happened?                           
Money                                    
What's Missing                           
Listen to the Story                       


August 1995 - UCLA Follow-up #5 at the Clinic in L.A.
Tell me about the object                 
Impossible Tasks               


September-October 1995 - Quit Program


November 1995 - UCLA Follow-up #6 - (5-10 hours week)           
I'm thinking of...                       
Writing                                   
Why? Because...               


December 1995           
Scripted Play                             


By January 1996, John was attending kindergarten full-time with an aide
and we stopped all tutoring at home.  The school district took over and
the resource specialist worked with his teacher and speech therapist to
help him in the areas he needed help with in school.  He will be 6 this
August and is now able to read, write and add on his own.  He will be
repeating kindergarten with the same teacher and limited supports.  He is
learning in the classroom and doesn't need any more 1:1 to learn.  He is
playing with kids and walking up to kids and introducing himself.  His
play skills have really emerged this year and he is indistingushable
amongst his peers.  Half the credit goes to Lovaas and the other half
goes to his school district (1 year of each).   

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65#
发表于 2007-10-14 21:37:18 | 只看该作者
提示: 作者被禁止或删除 内容自动屏蔽
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66#
 楼主| 发表于 2007-10-18 08:24:22 | 只看该作者

吞食沙子

最近, 宝贝喜欢上了sandbox。带他去公园玩, 总是直奔那儿。其实, 他很不喜欢沙子, 最喜欢的, 就是要我用沙子弄数字。一到那儿, 就命令妈妈“ba ba, make numbers" . 自己呢, 就在sandbox的边沿上爬过来爬过去,有时候在边沿上走, 如同走平衡木。因为手不爱接触沙子, 爬时手也不支撑任何东西, 一不小心,摔了一个倒跟头,嘴巴里全是沙子。我们见了,大惊失色,赶快教他把沙子吐出来。可惜他嘴巴肌肉不灵活,怎么也不会吐, 最终还是吞了不少沙子到肚子里。我们心里虽然很紧张,但是也希望宝贝能吃一堑,长一智,下不为例。

第二天再次去公园,为了鼓励宝贝玩沙子适应沙子,我用沙子做了1-10后,又用手把它们弄散了,嘴巴里还夸张地叫着“Crash!"如此反复几次,竟然吸引了宝贝的注意力,他也凑了过来,帮我把那些数字Crash掉!

这样玩了几个回合,我正琢磨如何扩展玩沙子呢,宝贝冷不防盯地抓起一把沙子,塞进了嘴巴里!我急忙扣开他的嘴,帮他把沙子掏了出来!并且告诫他,沙子不是食品,不能吃沙子。话音还未落,宝贝又是抓起一把沙子,企图再往嘴巴里塞。我赶紧制止。

心里真的很郁闷很困惑!宝贝是个对食品毫无兴趣的孩子,从小baby时起,就不往嘴巴里乱塞东西。怎么现在见了这个沙子,(而且前一天他也不小心吞了一点,应该知道其味道及其yucky),反而往嘴巴里送呢?或许,他喜欢沙子在嘴巴里磨嗦的感觉?

今天,O.T来家,我们和她谈到这件事情. 她反而觉得这是好事,说明宝贝开了一点窍,想到用嘴巴去探索去感觉事物了。

我不知道这种解释是否有些牵强附会。不过,沙子这东西,肯定是要看牢的,坚决不能让他再吃!

[除了沙子,平常和宝贝玩playdough时,如果我们把playdough搓成圆形,他也会把它放嘴边尝尝 ---这个行为我们似乎理解。我们估计,宝贝可能以为那是和肉圆子一样的东西,可以吃吧?]
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67#
发表于 2007-10-18 11:39:12 | 只看该作者

一点建议

如果你儿子不喜欢吃饭, 不妨带他去外面餐馆试试, 或者试试把快餐带回家.

我儿子在家是喜欢的猛吃, 不喜欢的就拒绝.但是,他很喜欢在外面吃饭,也喜欢从外面买回家的快餐.有时候他实在没的吃了, 我们就 order 一个 Pizza, 可以管两天.此外, 他还喜欢买回的半成品, 在家用烤箱烤着吃.
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68#
 楼主| 发表于 2007-10-19 10:12:12 | 只看该作者

困惑


我和老公都不是很SOCIAL的人。没有孩子的时候,即使足不出户,也能自得其乐。到美国后,读书期间,也结识了两三个好友,互相还有些走动,可是随着大家的毕业,各奔东西,我们又开始过上孤家寡人的生活。

有了小孩,为了孩子的成长,我们也开始慢慢改变自己,试着带孩子走出去。去哪儿呢?走来走去,也就那么几个地方:图书馆,教会,公园,商店,学校。在很多地方,大家都是萍水相逢,不可能有深交。真正可能获得深交的,还是在华人教会。可是,我们不是教徒,在教堂里总是显得有些别扭。一来二去,教堂也不去了。

因为有了我们这样的父母,孩子的社交圈子,几乎为零。孩子的社交技巧,更是为零。

某天,带孩子去图书馆,在儿童室,看见一金发美女带着一个女孩,我和她简单攀谈起来。宝贝在旁边玩着火车轨道。突然,他向那金发美女走过去,把她的头发抓了一把起来。我们都很惊讶,赶快把宝贝制止了。老公本能地就说:"no!no!no!"我一般不愿意只用一个“No"来打发宝贝,我希望他能明白一点正面的道理。可是,事情太突然,我也唐僧不出什么道理来,只是跟他说”Honey, that is not good!"然后自己向金发美女道歉。金发美女连忙打圆场说她的小孩也总拉她头发,没有什么大不了的。----宝贝的一个社交愿望就这么结束了。其实,我心里明白,宝贝去注意到那个金发美女,本身就是一个可喜,说明他在观察周围。他去抓那个人的头发,也许是为了表现他的好奇甚至喜爱(宝贝当时的表情是带着笑意的),只是他的表达方式错了。而我们作父母的,也因为缺少教育手法和经验,没有很好的利用这个社交场景好好的教宝贝一点正面的社交技巧。其实事后想,我应该问宝贝,“你是不是很喜欢这个阿姨啊?如果是,给她一个HUG!不过不能抓头发啊。。。”----但是又这么一想,对28个月的小孩子,这么唐僧是不是在对牛谈琴?

又有某一天,我们带孩子参加老公学校组织的一个针对5岁以下儿童的PLAYGROUP.在那里,宝贝看见了一个中国老太太,不知道为什么(我一相情愿得想,或许宝贝以为这个老人是自己的奶奶?),宝贝竟然跑过去,给了那个老人一个拥抱,过了一会儿,又去给了一个拥抱。第一次,老人很惊讶,第二次,老人喜得眉开眼笑。----我不在场。我不知道老公当时是否给宝贝以正面赞赏。----当老公事后告诉我这些的时候,我很高兴宝贝的进步。宝贝真的开始关注他的周围了。他需要的,是更多的机会以及正确的引导。

我和老公于是再次谈起来,为了孩子,我们是否需要再试着改变一下自己的自我与信仰。逼迫自己走出去,去最可能获得深交的华人教堂?

子非鱼,蔫知鱼之乐?



以上文本借助www.InputKing.com在线中文输入法输入
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69#
 楼主| 发表于 2007-10-19 12:22:51 | 只看该作者

让我欢喜让我忧

欢喜的是,宝贝的语言,一直在慢慢出来(ref: new word list)。很愿意模仿说话了。有的时候,会出奇不意地冒点惊喜给我们。

某天,宝贝的爸爸在客厅看电视,宝贝在旁边玩。电视上出来一则农场的广告,宝贝看见了,指着电视说“Farm!".我们惊喜。平时经过农场时,告诉过他那是farm。没有料到他真听进去了,而且竟然能和电视上的画面联系起来!

某天,我们全家开车出门。开着开着,公路上跑过一个松鼠,宝贝看见了,叫了一声:“Squirrel!”我惊讶,不太相信他会这个词。我平时没有教过他这个词。老公说他给宝贝讲过几次,次数不多,没料到真进耳了。

句子方面,会了几句新的:
I want ...
A, B or C? (A,B,C通常是某种食品)
爸爸,come over, help me
爸爸,carry me up (carry Wen up)
wait for our turn

终于能回答自己叫什么名字了,也能回答妈妈的名字。不知道的名字一律用弟弟的名字搪塞!

除了语言之外,对外界的关注也多了。偶尔会主动给爸爸妈妈弟弟拥抱亲吻。总和弟弟抢玩具。让take turn时,知道耐心等待了。

说了好的,再来说差的。

关在家里,我们穷开心。一带宝贝出门,看看他和那些同龄孩子的差异,我们就觉得前途漫漫。在公园里,别人的孩子都生龙活虎,你追我赶,这玩一玩,那看一看,灵活得很。我家宝贝儿,总是旁若无人,玩着“非主题”的项目。28个月的娃娃,跑起来动不动就摔倒,腿上常常青一块紫一块的。动作非常clumsy!

语言呢,虽然会说不少,但是发音都不精确。很多只有爸爸妈妈才听得明白。

Social 方面, 虽然对人有点关注, 也不太明白boundary.比如,和几个小孩在sandbox里玩,其中一个男孩玩推土机,机器发出zzzzz的响声。宝贝不喜欢,径直跑过夺那个小男孩的推土机。。。。

训练项目呢,比如目光对视,听指令,玩假想游戏。。。总是时好时坏。让人感觉他是一个无底洞,不太明白他到底知道多少。

-------------------------------------------------------
new word list (或许有雷同?):

shapes

circle

triangle

square

rectangle

pantagon

horse

dog

house

cross

lizard

bird

bunny

red

blue

window

cell phone

wait for our turn

carry me up

fan

small

big

Bicycle

pop

Farm

Squirrel

Snack

come over, help me

microwave

in/out

yard

deck

marker

grape

rice

school

grass

driver

wipe

horn

move on back

people

fruit

black

clock

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70#
发表于 2007-10-19 12:46:38 | 只看该作者

FYI

Copied from the internet. Just for your information.

"Individuals with Asperger syndrome do not exhibit a clinically significant delay in language or in cognitive development. Either or both of these delays can be seen in people with autism."

"It is more likely, too, to find that people with Asperger syndrome have poor co-ordination and fine motor difficulties."
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71#
发表于 2007-10-19 23:07:09 | 只看该作者

re:谢谢你前两天在我心情不好的时候发的安慰短...

谢谢你前两天在我心情不好的时候发的安慰短信。
要相信,孩子的潜力真的是无穷的。31个月,当我开始面对自闭症的现实时,我的孩子还只会说简单的几个单词。但现在,4个月过去了,可以说是判若两人。他已经很清楚的表达自己的需求了。自从上幼儿园,某些发展已经不是我可以预测到的,也就是说,他自己也在努力学习一些新的东西。所以,相信我们的宝贝,他们会创造出某些奇迹。

而且,在美国还可以找到一些机构的帮助,而在中国,在很多城市,什么都没有。如果看了我的帖子,你会惊讶的发现,苏州,不算落后的一个城市,居然是内科医生测评我的儿子是否是自闭,有趣吧。在测评的过程中,他还中断一会儿,给一个咳嗽的小姑娘配药。结果可想而知。我能做的,就是放弃工作,自己摸索的教孩子。速度之慢,效率之低,无法形容。

有些时候很羡慕你们,也想过放弃自己目前拥有的,带孩子想方设法的去国外。但,毕竟是,很多东西无法放下。
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72#
发表于 2007-10-20 03:02:23 | 只看该作者

re:我的孩子比你的小4个月,如果4个月以后他...

我的孩子比你的小4个月,如果4个月以后他能说这么多话,我会幸福死吧。想当初第一次听到自闭症这个词就是你在BBS上的这文章。特别喜欢你叙事的口吻和文风,心疼你字里间的痛和对孩子的爱。今天我也处在这个挣扎中,我们只能坚强和等待了。做我们所能做得到的最好。问心无愧就行了。互勉。
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73#
发表于 2007-10-20 09:45:42 | 只看该作者

re:我和伊恩妈妈有同感。 很喜欢你的文风,我...

我和伊恩妈妈有同感。 很喜欢你的文风,我看到了单纯,细致,幸福,和聪慧。

关于朋友,质量比数量重要,否则当social butterfly有什么意义,可能也早就从商了,怎么会为tenure而奋斗?

我的社交圈子也很小,也常常去bible study. 小孩子们一起唱唱玩玩,人太多又乱, 谈不上建立友谊,我还要去听经书,否则不好意思哈。但至少儿子不再怕人多的环境。我是信不了的了, 是谁说过的,“知识越多越反动”? 但是我很希望孩子能有信仰,能为他们的生活指引方向。
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74#
 楼主| 发表于 2007-10-20 10:24:15 | 只看该作者

re:谢谢大家的关心与留言!我们是同病...

谢谢大家的关心与留言!

我们是同病相怜的人,相逢在黑暗的海上,彼此交会互放一点点光亮。

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75#
 楼主| 发表于 2007-10-20 11:24:17 | 只看该作者

私人训练(private therapy)

看了看网上几个在美国的家长的经验,我们意识到,要想保证孩子得到真正的好的服务,还是需要去请私人的训练师(private therapy)。于是,除了在家接受政府提供的早期干预服务(early intervention)之外,我们也给孩子定了一个私人语言训练(private speech therapy)。每周暂时只去一次。

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76#
发表于 2007-10-20 11:58:50 | 只看该作者
提示: 作者被禁止或删除 内容自动屏蔽
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77#
 楼主| 发表于 2007-10-21 09:10:00 | 只看该作者

re:wenwenma:谢谢你的建议。...

wenwenma:

谢谢你的建议。有些活动我们也在做,只是强度不够大。看来还是要多做并且坚持。我儿子也是爱流口水,真希望这些大运动训练能把这个毛病治好。

再次感谢你的热心。



oy
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78#
 楼主| 发表于 2007-10-23 21:53:13 | 只看该作者

$2 Million Massachusetts Pilot Program to Offer Autism Services to 80 Low-Income

一个让人充满希望但又让我失望的新闻

One advocate I spoke to mentioned that there has been some commentary on online discussion forums about this program, about how it's a shame that this program is modest and applies only to low-income families. The advocate also mentioned that there were parents who cited the acute need for families of very modest means to access vital autism-related services. Both are right.

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The Massachusetts Autism Division has unveiled a $2 million model program to provide up to 80 low-income children with autism spectrum disorders with home- and community-based services—as much as $25,000 per year for three years.

Children up to age 9 are eligible for the one-on-one services. Families must apply for the The program applies to children under age 9 who meet the income eligibility requirements of the state's MassHealth state health insurance program for low- and moderate-income families. An announcement from the state says:


The funding for this new Waiver Program is limited and the number of applicants that can be served is also limited. The Autism Division expects that up to 80 low-income children will be able to participate at this time. This Waiver Program will provide one-to-one interventions to help children with severe behavior, social and communication problems through a service called Expanded Habilitation, Education. This service is expected to occur in the child’s home under the supervision of trained clinical staff and will use an intervention method as identified by the family and clinician such as Applied Behavioral Analysis (ABA), Floor Time or a Communication Model. The waiver will also provide related support services such as community integration activities and respite.

The purpose of the Waiver Program is to help eligible children with autism to remain in their homes and actively participate in their families and in their communities. The waiver will serve up to 80 children under the age of 9, with an autism spectrum disorder who meet the clinical criteria for the Waiver Program, as well as, MassHealth financial eligibility, which is based on family income. The Waiver Program provides up to $25,000 worth of services and supports, per year, based on the assessed needs of the child. This Waiver Program is for a 3 year period of time and children are reassessed every year to ensure they continue to meet the eligibility criteria for the program. Participation in the waiver program ends, regardless of the start date, when the child reaches his/her 9th birthday.


Massachusetts families with autistic children who meet the eligibility criteria must apply for this program between Nov. 5 and Nov. 16, 2007. More information is available at the website of the Autism Division of the Massachusetts Department of Mental Retardation. Applications are available in English, Chinese, Creole, Portuguese, Russian, Spanish and Vietnamese. Here's an example of the English form. Contact information for the waiver program is available: call toll-free 1-888-367-4435 or e-mail: DMR.autismdivision AT massmail.state.ma.us.

The state also has set up a website for autism services providers to get information about providing services at home and in the community.

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79#
发表于 2007-10-23 22:26:19 | 只看该作者

re:Can you network with...

Can you network with other middle class families and call this program to protest? Maybe a little too late in the game, but you got to get your voice heard.

Nothing comes easy from legislature, so we as a community needs to advocate hard for our kids, so the politicians understand that they'd better listen to us and do something for us if they want to stay in their seat for one more session.

下面引用由oy发表的内容:

一个让人充满希望但又让我失望的新闻

One advocate I spoke to mentioned that there has been some commentary on online...

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80#
 楼主| 发表于 2007-10-24 09:28:29 | 只看该作者

update

我们这边几个机构给我们发信,让我们不管收入如何都要去申请。----不知道是不是这些机构准备向政府施加压力,反正人很多,就我们这一片据说就有59家申请了。
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