自闭之魔

kwenma2

oy:注意一下他这几天的主动语言是否多一些，或者新的单词蹦出来，以及他的注意力和眼睛对视，是否多动，入睡时间是否延长？

oy

kwenma2:

语言方面没有特别变化，也没有变更多动，但是睡眠有点受影响。好像比以前难入睡一些了，而且早晨醒得早了，早上６点左右醒了就不再能入睡。我们现在是一天一片DMG,什么情况下决定提高到两片／天呢？

BTW,关于funding(from DOE)的事，请查你的悄悄话。

kwenma2

DOE funding的事谢谢打听了。就funding的事，我也给你回了悄悄话。反正任何事情都得争取。你不争取，他就不帮你申请。这是我从其他家长处得到的信息。

关于DMG，在观察几天，从上面几方面多观察，看有无变化？

melon

你写的这一段我特别有同感。特别是做ABA的前两年，经常是在觉得他怎么还没学会一样东西或者技能的时候，他在另外一个地方给我一点惊喜。正是这一点点小小的惊喜给我希望，支撑着我往前走。

下面引用由oy发表的内容：

当你快崩溃的时候，又是柳暗花明又一春了。

oy

周二将开第三次小组会议。估计会有很多可以交流讨论的。

oy

Self-regulation will be lost under stress or too much stimuli. Doing worse as space gets bigger: smallroom> living room> playgroup> store.

Limited interests, unable to play toys appropriately, wondering around during leisure time

Short attention span, move very quickly through materials/toys.

这是我们对宝贝的评价之部分。

环境，对宝贝的影响似乎很大很大。空间越开阔越嘈杂，宝贝越迷失。参加Playgroup已经几次了，宝贝表现一直不好。定不下来，不会玩。绝大多数时候是跑来跑去，自己开心地笑开心地叫。

今天，又是这样。

宝贝笑着张望着，Joyce(文文的case coordinator，一个快言快语的黑人女人，是我感谢名单里的第一个人，第一个告诉我们宝贝有自闭的人)说：“文文今天状态不错！”我说，“他是很开心，可惜我不知道他是为什么开心。在自己的世界里自己开心。。。”Joyce打断我说，“开心就好，总比不开心好吧！” －－－我苦笑，脑子里想象着某些神智失常傻笑狂笑的人。。。。。。

宝贝吃着Snack,我喊宝贝。宝贝面无表情。我对Joyce说，“以前，他很依恋我，看见我离开就哭，现在看见我无动于衷。我不知道这是进步还是退步。”Joyce又打断我，“现在他的世界变大了，你不再是中心，要老惦记着你干什么！”

宝贝笑着跑着，突然跑到某个小朋友的妈妈的怀里，把头枕在别人胳膊上，就象和我一样。估计把别人的妈妈当自己妈妈了。那个妈妈也很慈爱，抚摸着宝贝。我看了，很伤心。首先想到的是宝贝不明白，不知道人际关系中的“boundary"。后来想，感谢上天，他是一个快乐的善良的孩子，这样的孩子，人们应该不会忍心去伤害吧？

我一直在想，我让宝贝来playgroup的目的是什么？可能达到这些目的吗？平心而论，没有比这更supportive的playgroup了。不到８个孩子的playgroup，总有四个甚至更多的工作人员，每个孩子有一个家长在场，宝贝还有自己的训练师只陪他玩。即使这样，仍然不能让宝贝有很好的互动。我不得不承认，宝贝，实在Challenging!

LittleKoala

oy：你是个很细心的妈妈，给宝宝做了非常好的记录。看起来，你们家大宝的基础其实挺好的，要是做了半年ABA进步不明显，的确得让他们检讨一下。我们的经验是，完全可以自己做，辛苦是肯定的了，但会从孩子的进步中找到乐趣。当然，你还有小宝要照顾，就更加辛苦了。用ABA，孩子的进步会很快，但得看孩子是否responsive；而用floortime会很累，也很难立刻见到阶段性的成果，能把两者结合起来是最好的。

niuniu2007

我觉得你们宝贝有多动的嫌疑。当年我们去看心理医生，她就说她看过那么多自闭孩子，大部分还是不多动的。所以我女儿太活跃，与别的自闭孩明显不同，所以给了自闭+多动注意力缺乏的诊断。不过我也看书上说，如果孩子是自闭，一般occlude多动注意力缺乏的诊断, 因为自闭孩子都拌有注意力缺乏。所以还有些糊涂。

她也是在人多和公共场合，非常容易亢奋高兴，和平时在家很不一样。既然他在这种场合亢奋，我觉得其不到社交的作用，反正他也不怕。还不如让他一对一的和一个孩子（不是弟弟）接触。我知道这很难，自闭孩子如果能和别人玩不就痊愈了吗？但是，我是避免把女儿带到人多的聚会上，小型的，最好就一两个孩子的，适合与她。

only personal opinioin for reference :-)

oy

Niuniu mom:

如果孩子有多动，该怎么对付呢？你有什么这方面的招吗？

kwenma从生物治疗的角度建议我给宝贝戒面食，我试了短短不到一个星期，最后是孩子和我都要崩溃了。注定了走不通的一条路。很失败。唉。如你所说，不管自闭不自闭，还是先把身体养好吧。。。。

说宝贝多动吧，他却不是那种很强壮的孩子，浑身肌肉松松的，一点劲也没有，跑起来动不动就摔跤。一点也不象我想象的多动孩子身手敏捷的样子。

带他去playgroup，是为了让他适应那样的环境，为三岁后去preschool做准备，让他明白snack time好好坐着规矩吃饭，收拾好自己的杂物，circle time的时候乖乖坐着。。。。以后学区提供的服务，基本上就和现在的playgroup类似，说不定还没有那么多的工作人员提供支持，希望现在他适应这样的流程了，以后去preschool能适应。至于从同伴那学习，获得社交知识，估计是不做指望了。

--------------------------------------
考拉妈妈：

如果我有你们那么好的心理承受能力，就铁心做宝贝的训练师了。我对自己能否长期坚持下来没有信心，和宝贝训练，基本上有1/3的精力用来内耗了。不过，万一没有选择，不行也得自己上了。

oy

开了一两个小时的会，谈了很多，最多的时间是来谈宝贝的问题。

自闭的核心问题，宝贝样样都有，而且很严重。不过，也不是彻底没戏。对于宝贝，有一个那么狭窄的窗口，在那个狭窄的窗口里，你提供了宝贝很感兴趣的事情，你对他提的要求正好合理，他和你会有很好的共享互动。那只是一个很狭窄的窗口，如果你把握不好度，过于挑战他，他就会放弃回避了；过于纵容他，他会陷入另外一种overarousal的状态，狂热固执而不再关注接收其他(比如你给他喜欢的数字玩具)。

怎么办？大家都觉得，当务之急，要宝贝学会玩，培养起宝贝对其他东西的兴趣。让他体验到玩其他东西的美妙。只有有了这个基础，才会有其他如注意力，social skills等方面的提高。ABA下一步主要任务就是让宝贝玩，不再局限在那个训练屋子里，而是搬到外面的客厅里来玩，这么做，就是为了找机会修正宝贝乱跑动的行为。Floortime,从今天开始，决定不再只是介绍有数字的玩具，开始引入其他类型的玩具，扩展宝贝的兴趣。

“wen is rarely observed using toys in a functional manner unless strongly facilitated by an adult. Wen need extensive intervention to increase functional play skills.  

Next steps:
1. Video modeling will be utilized to increase functional toy use.
2. Picture activity schedules will be utilized to keep Wen on task for extended periods of time.

It is essential that all play skills be generalized into the natural enviorment as soon as possible and adult facilitation be reduced to encrouge independent play. Adult support should be utilized to redirect Wen back to play tasks and ensure he remains on task for appropriate periods of time once he has learned how to play with target materials."

manyou

很喜欢你的贴子,细腻质朴的语言,每每读你笔下的WEN,经常让我想起我自己的儿子几年前的情形.他们很象.WEN的语言表达比我儿子好,因为我儿子四岁才发出第一个有意义的词.但是我儿子生活很规律,饮食睡眠都不错,对指令的理解好一些,所以从两岁开始一直在普通幼儿园上学.现在他在公立学校普通班读二年级.
儿子和WEN一样也是非常喜欢数字,还有字母.当年的儿子最喜欢的事情就是排列数字和字母.我可能是比较心软的妈妈,我还是觉得他这么做一定有他的心理需求,强行阻止也是很残忍的.我在网上找寻各种和数字有关的玩具,这些玩具肯定要有其他的功能,这样一来让孩子在摆弄数字的同时提高其它的认知,慢慢扩展孩子的兴趣.儿子当年对日历也是爱不释手,于是我们选择一些事情或每天的天气用极简单的词写在日历上,让孩子看日历的同时关注每天发生的有意义的事情.对于假想游戏,我们是从食品玩具开始,因为这最容易理解,美国有很多这种玩具,然后再逐渐扩大范围,现在儿子是LEGO迷,我们买了各种各样的LEGO,用LEGO搭各种东西进行游戏.
曾经读过韩国人写的一本书----好妈妈,慢慢来,我想对于我们这样的孩子,更是只能耕耘,不问收获.其实你会有收获,经常在你不经意的时候,他会给你惊喜,你会发现在他漫不经心的外表下,他其实一直在努力.
其实孩子恢复得如何很大程度上取决于孩子自身的能力,所以只要付出努力就好了.所以我觉得让孩子保持快乐的心情还是很重要的.我喜欢美国这里的教育是因为很多时候觉得学校里的孩子,不论高矮胖瘦,成绩好坏,一个个自我感觉都很好,无论什么样的孩子,老师都不说一句出格的话.太晚了,有机会再和你聊.

oy

manyou:

谢谢你的回复，给你发了短信息，请查收。

oy

今天，大小宝贝的两个训练师决定一起做一个session。于是，小小的训练室里，挤满了6个人。人多嘈杂，最后是两个宝贝的状态都不是很好。

妈妈发现，大家更愿意陪小宝贝玩。和哥哥比起来，小宝贝更好玩儿，因为他对什么都好奇，有反应。尽管训练师们也在特意不让宝贝落单，可是不知不觉地，注意力总是被小宝贝吸引过去了。大宝贝自己也自得其乐地一个人在一边玩。

oy

You can do many learning activities during daily routines. For example, you
can teach counting while putting away the dishes, by having your child count
the number of knives, forks and spoons as he or she puts them into the
drawer. Teaching is very effective when it comes as a natural part of every
day activities. Here are some ideas to help you get started….

Mealtime:
• Talk about your day and upcoming activities. Help your child remember
sequences by asking about their day.
• Teach past, present and future by talking about the morning before, what
you’re doing now, and what you plan to do.
• Make placemats out of colored construction paper and talk about the
colors.
• Teach your child to follow directions and learn sequencing by asking him
or her to help with simple food preparation: “First you need to get out the
bread, then spread the peanutbutter and then the jam,” for example. Or,
“Please put the forks, spoons and napkins on the table.”

Dressing:
• Ask your child to look out the window before he or she dresses to help
choose clothing appropriate for the weather.
• Teach you child to do fasteners on his or her clothing and shoes
• Write your child’s name on his or her hanger or peg so he or she can learn
to recognize his/her name.
• Review color concepts by talking about the colors of clothing: “Do you
want the blue shirt or the red shirt?” for example.

Bedtime
• Ask your child to tell you a story either from their imagination or
retelling a book.
• Read, read, read to your child—even 5 minutes a day makes a difference!

oy

Remember, young children learn best when doing “hands on” activities
with someone who cares about them.

1. Cue your child to listen to you and to look at you when you give an
instruction—sometimes children don’t follow an instruction because they
haven’t really focused on what you are saying.

2. Praise your child for listening and following directions. (“Wow, Mary, you
really listened and remembered to do both of the things I asked!” rather
than “Good girl, Mary”.)

3. Play Find It—ask your child to get two or three things and bring them to
you, or ask them to follow two or three step directions with some small
toys. For example, you could ask her to get her Teddy Bear, blanket and
favorite book and bring them to the couch, and reward her with a story
and a cuddle. Or, you could have several small toys and containers and ask
her to follow directions such as “Touch the block, put the ball in the box,
and give me the doggy,” building up to three steps.

4. Play “Concentration”. You can buy or make the cards yourself:
Paste pairs pictures or stickers to the backs of 3x5 cards or squares
of paper—you’ll need about 10 to 15 sets of cards. Lay the cards face
down on the table and take turns picking up one card, looking at it and
then turning over another card to see if it matches. As you turn over
the cards, your child should start to remember where the matching
card is located. Start with as few as six sets and gradually increase
the number of pairs of cards you use as your child learns the game,
and her memory skills improve.

5. There are some commercially available “Memory” games available: Pooh
Memory and Turtle Memory are just two.

6. Read stories with your child and ask her what happened to the characters
in the story.

7. Make a sequencing activity. You can get children’s story books at St.
Vincent’s or Goodwill or garage sales. Cut the pages of a familiar story,
such as the 3 Bears, apart, and have your child put them in the sequence
of the story. Start with 3 pictures, for example, 1 showing Goldilocks
coming to the Bears’ home, 1 showing her breaking the chair and then a
picture of the Bears coming home and finding her asleep. As your child
learns the activity, you can increase the number of steps to about 8.

8. Teach your child to do something which has several steps. For example,
teach her how to make a sandwich. Give instructions for two or three
steps at a time, for example, put the bread and peanut butter on the
counter and get a knife from the drawer.

9. Start a journal with your child. Sit down with your child in the evening
and talk about her day. She can draw a picture highlighting a favorite
activity, and you can write a word or two at the bottom, like “Playing with
Julie” She will learn to recall events which happened earlier in the day
and it is a nice way to share and wind down at the end of the day.

10. Switch roles and ask your child to give you directions or lead a game.
You can be silly and pretend to forget what to do next and have your child
remind you.

11. Ask your child to tell you things about familiar objects, places or people
which are not in view at the time. For example, “Tell me three things
about our car.”

12. Ask your child to name things from a common category, for example,
“Tell me all of the animals you can think of” Other categories would
include shapes, colors, articles of clothing, names, body parts, toys, etc.

13. Build memory and thinking skill activities into daily routines, for
example remembering what things need to be done when it is bathtime, or
what steps to take when helping Mommy bake cookies.

oy

Fine Motor Activities

! Drawing on a vertical surface promotes development of fine motor control in young children. You may want to tape a piece of paper to the fridge (easier to wipe off stray marks) or use an easel.

! Provide large size pencils, crayons and chalk and large surfaces to color, paint or draw on: big pieces of paper, sidewalks with sidewalk chalk, etc. (See illustrations)

! Hole punches and scissors come in lots of different designs, such as squiggly lines and different shapes. Using a hole punch can strengthen hands and using different, fun tools sometimes makes a difficult task more rewarding.

! Games like “Bedbugs” require the use of plastic tongs which strengthen hands and develop the child’s fine motor skills. Using tweezers and medicine droppers for picking up things is fun and develops hand control

! Make necklaces or jewelry or gifts using macaroni strung onto a lace or glued onto a container. You can help the child spray with gold or silver spray paint and add glitter, or paint with poster paints or food coloring.

! Working with clay and play dough strengthens hands and develops fine motor skills. Using real dough can be very interesting for children. For example, let the child knead and shape bread or pizza dough to make their own hamburger bun or pizza. (See clay recipe)

! At celebration times, your child may be interested in making cards to give to family members and friends. A wide variety of papers and embellishments (feathers, pompoms, glitter, stickers, etc.) are available to make a fancy card.

! Make a picture frame by gluing popsicle sticks onto a piece of cardboard and inserting a picture. Your child may have fun gluing rocks, pine cones, etc. onto the frame to decorate it.

! Use stencils for your child to trace and make pictures and designs

! Make placemats out of construction paper for everyday and for special events. Your child can cut out objects from magazines or catalogs and glue them to the placemat to personalize it. (You can preserve the placemat by covering it with clear “Contact” paper) Napkin rings can be easily made to match by cutting sections of a paper tube and decorating it.

! Give your child a plain paper bag to decorate for a gift bag.

! Writing in shaving cream: spray shaving cream onto the table or a baking sheet. Let your child finger paint with it. You can add drops of food coloring to make the design more fun. (See shampoo paint recipe which follows)

! Ask your child to help you cook. Stirring, spreading, placing objects are all good fine motor activities.

!Display your child’s creations prominently.

!Cover the bottom of a pan or plastic container with a layer of sand or cornmeal. Your child can use his/her finger or a stick to “write” in the sand.

! Markers and crayons come in all kinds of fun styles. Some have shapes on the end to use as stamps, and some are scented.

! Make paper airplanes ! Give your beginning scissors user card weight junk mail to learn to cut. They can “shred” you junk mail for you while learning to use their hands.

Make learning fun—do interesting projects focusing on your child’s interests. For example, if your child is interested in dinosaurs, you can make a dinosaur picture with torn paper and shapes to represent the dinosaur habitat. Finish with dinosaur stickers.

Many more ideas are available on the internet and at the public library!

Play dough
3 cups flour
1 cup salt
1 cup water
1/4 cup oil
2 Tablespoons vinegar


Mix all ingredients well. Add more water if needed, but avoid making too wet to handle. Knead until smooth. Keep in a tightly closed container or bag.

Clay to make beads
3/4 cup flour 1/2 cup salt 1/2 cup cornstarch warm water Mix dry ingredients together. Gradually add warm water until the mixture can be kneaded into shape. Make beads by rolling into little balls, piercing the balls with a toothpick or knitting needle and allowing the balls to dry. Paint the bead. Allow to dry and string them when thoroughly dry. (Does not store well—use as soon as you make it.)

Cornstarch Fun Mixture (Make this with your kids; it is fun to watch!)
1/2 cup cornstarch 1/4 cup water food coloring

teaspoon measuring spoon small plastic container

Place cornstarch into container. Slowly add water, 1 teaspoon at a time. Stir the mixture after each time you add water. Feel it with your hands.

Continue adding water until the mixture is a thick paste. Observe changes as you add the water. Without mixing them in, add 3 drops of food coloring (may be the same or different colors). Observe as the colors mix into the cornstarch.

Finger Paint 1
Put a few drops of food coloring into some plain yogurt (buy the cheapest kind for this activity—you won’t be eating it.) This dries to a shiny surface.

Finger Paint 2
1/2 cup cornstarch 3/4 cup cold water 2 cups hot water 2 teaspoons mouthwash as preservative 1 Tablespoon glycerin (at crafts stores or pharmacy)

Mix cornstarch and 1/4 cup water in a saucepan to make a paste. Add hot water, stirring to prevent lumps. Cook over low heat until mixture begins to boil. Remove from heat and stir in 1/2 cup cold water and the mouthwash. Divide and pour into jars. Add food coloring and stir to mix. Keep tightly closed.

Shampoo paint (cheaper than shaving cream and just as much fun)
3 teaspoons shampoo and a small amount of water. Whip with an electric mixer until it is thick and creamy. Add food coloring if you want to.

niuniu2007

说到你家宝贝对玩具不functional play，和我们家儿子一样。他也是从小就对各种玩具都不感兴趣，但是却对大人的东西感兴趣：如收音机了，车里的音响系统了，什么的。他经常偷偷的吧我的电脑总开关给关上，还得我常丢失未储存文件，还经常把车里的手闸给抬起来，害得我不知道还开车，把手闸搞坏了。音响系统的开关功能都搞得一清二楚。甚至，有一次陪姐姐去医院，在急诊室待了1个小时，那个病床怎么抬高，怎么固定，心电图脉搏显示仪，他也都看在眼里，医生出去后还向我示范询问。
所以，也是在幼儿园里什么也不玩，就对教室里的放音机感兴趣，还有电扇，做做颜色数字的练习，故事也基本听不进去，英文也没学会说，略微能听懂些。不过，在学校发生的事都零星的主动的讲出来，说明也没有一点也不注意环境。
我因为只能顾一头，知道儿子有点自闭倾向，也管不了了。

我是想说让他们玩大人的“玩具”或许是个alternative.只要是functional play,管它是小孩该玩的还是大人该玩的。只要动脑了，就可以。

oy

“只要是functional play,管它是小孩该玩的还是大人该玩的。只要动脑了，就可以。”如果真的如你所说的那样，也就好了。可是我家孩子不是这样的。

比如带他去Playgroup,他就喜欢看着那个屋子里的两个“Exit”标志发笑，看屋子里的挂钟发笑，然后在阶梯上爬上爬下。在家里，在厅里跑来跑去，摇头晃脑，或者去玩微波炉，打开关上，风扇打开停掉。或者玩一按按钮就出声音的玩具，按，听，再按，再听。数字玩具呢，以前还有规律摆放，现在是乱弄一气。玩电脑，以前也是有点意义地输入数字字母，现在也是乱输一气了。有个leapfrog游戏机，可以涂颜色可以玩小兔过河。。。我试图教他，他比我还快，只要我有企图，就马上把游戏机关掉。我就说他现在越来越倒退，拒绝用脑子了。

正因为他对很多东西不感兴趣，训练起来很struggle，需要不停地把他拉过来，强迫他做一做。我老公说他没有点子，不知道怎么训练，我说我有的是点子，可是很多东西在宝贝身上没有共鸣response。苦于没有特别吸引宝贝的点子。

看别人家的文章，总觉得别人的孩子很听话，让练球就练球，让作手工就作手工。。。。。程度好的和父母还有简单对话。我们的孩子，太不合作了。他不哭，他不闹，他就是忽略你或者要跑开。

我们夫妻都很宠孩子，训斥他两句心里都自责难受。可是有时候看他那么不听指令不合作，真觉得我们应该给他一点颜色看看。小时候不在他面前有权威，长大之后估计更难了。我自认为自己做不到“权威”，就对老公说你严厉一点吧，至少让宝贝服从一个人。可是他也觉得宝贝可怜，不狠心。。。。作慈父慈母容易，作有智慧的严父严母难啊。

melon

看你写大宝小宝就像是２年前的甜瓜，不过现在真的好多了。

另外就在对待孩子方面，看得出你们两口子都特别爱孩子（大小宝很幸运啊），但是该FIRM的时候也得FIRM。这个不是吼他们，而是很平静，但是很认真地跟他们说‘LISTEN','LOOK AT ME', 'NO'....

oy

melon妈妈：

几个家长私下里给我写信安慰，如同你说的一样，孩子在慢慢变，随着长大孩子慢慢会变好一些。最后的breakthrough，其实很大取决于孩子自身的发展。你们这些走在前面的人的话，会给我很大的安慰与信心。怎么做好父母，我们也在学习思考调整。谢谢你们！