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路漫漫其修远兮--小宝的康复路

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1#
发表于 2013-4-17 05:28:59 | 只看该作者 回帖奖励 |倒序浏览 |阅读模式
终于可以发帖了,决定开始记录我家小宝的进步点滴以及分享我们在这个过程中学到的东西。从版上前人的帖子特别是K妈的帖子中学到了很多,也希望我们的经历也能给他人点帮助。

我家小宝去年两岁四个月确诊,到现在5个月的时间里我们也从对自闭症一无所知到渐渐了解了一些干预的手段和治疗的方法。小宝从出生到18个月一直发育良好,个个发育指标均按时或提前达到,18个月已能说很多字,认识许多蔬菜动物水果,2岁发病前会说肚子饿,到家里了等短句会接说好几首唐诗和唱好几首儿歌。18个月开始上幼儿园后渐渐不爱说话不笑了,但还和人玩,见到邻居还主动挥着小手说hi。因为我们在美国,上幼儿园后接触英语,开始以为是不适应的原因。几个月后老师反映上课坐不住,不和小朋友玩,叫名字不理。我们也渐渐发现叫他不理,也不看人了,最后发展成我们和他说话,他面无表情看着别处,向我们不存在一样。和家里人视频他一个人躲在角落里玩,不理人也不看人。喜欢反复把小东西象lego放在盒子里再倒出来。开始我们从没往自闭想过,一是不了解,二是之前一切正常。就在确诊前不长时间我们问他为什么不和小朋友玩?他还说小朋友坏。有一次天特别热带他去买东西,他就是不下车,我问他你为什么不下车呀?他说"热死"。我那时候不觉得什么,后来他再也没回答过为什么的问题了。老师和我提过两次带他去看看,我还是不觉得什么,不过还是带他去看了,结果说是自闭症,现在回想还觉得可笑,他那时候很典型的症状,我还是不相信也不觉得他是,医生确诊了候我还和医生说我认为他不是。

就这样稀里糊涂,和早期干预联系了,他们也进行了评估,他在许多方面大福落后,拿到了每周10个小时的ABA,我们因为不够重视,后来又是感恩节,圣诞节假期,拖到今年一月才正式开始ABA。


2#
 楼主| 发表于 2013-4-17 06:12:42 | 只看该作者

re:开始ABA之前,我们阴差阳错地为了给他戒...

开始ABA之前,我们阴差阳错地为了给他戒奶瓶,他不喝奶了,我们发现他又开始开口了,开始时只是反反复复说一些他过去会说的儿歌的片段,唱歌他也肯接着唱了。后来出去陆旅游了一次,回来后眼睛对视和对人的反应也变好了,我们至今不知道具体什么原因,过一段时间以后又退回了出去前的状态。后来我在网上查怎么能帮助眼睛对视,看见有人提到他们家的小孩吃了鱼肝油后对眼睛对视很有帮助。他们特意提到了Carlson Norwegian Cod Liver Oil, 我们也赶紧买了,吃了几天以后效果很明显,对视和对人的反应有很明显的进步,说话也有了一点点进步,开始能说吃饭喝水,穿衣服下地等主动性语言了,会主动来拉我们和他玩了。开始ABA后一个月,开始直到以琳,看了K妈的贴子正式开始了解学习biomedical的方法,因为已经尝到了甜头我们也更坚信biomidecal的方法可以事半功倍。当然,敢于训练也是必不可少的,这也是现在我们大家都知道的,两种手段是相辅相成的。
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3#
 楼主| 发表于 2013-4-17 06:27:03 | 只看该作者

re:目前看到的很有用网站 http://ww...

目前看到的很有用网站 http://www.autism.com/index.php//adams 这个网站是James Adams最早的dan一生之一创立的,他也有一个自闭症小孩,
一直致力于自闭症的研究。这上面有2013年最新的 summary of dietary, nutritional and medical treatments for autism 的综述文章。
对于没有条件找Dan docotor的人很有帮助,是个具有指导意义的文章,一定要看看,我们之前因为目前保险的原因
没有找dan医生,只是通过网络信息,觉得之前鱼油和维A有些过量,根据这个文章才调整了量。
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4#
 楼主| 发表于 2013-4-17 08:26:18 | 只看该作者

re:真正第一个加的supplement是甲基...

真正第一个加的supplement是甲基B12,不过我们不是用注射的方法,是口服的,也看到了很明显的效果。因为小宝没有太大的肠胃问题和过敏的问题,吃饭也一直很好,加上注射的方法还是挺不好实行的。吃了一个月以后,看到了眼睛对视,social和语言各方面的进步。在家里和我们的目光对视很好很自然,语言渐渐多了一些,能回答一点简单的问题了,昨天看书时问他什么东西在哪里能指出了也能完成书中的句子了。昨天吃饭第一次问出这是什么菜菜。不过进步是缓慢的,不是突然的,这一个月里我们还在两个星期前加了B6+Mg, 吃了B6+Mg没有看到什么明显效果。上个星期开始给他喝天然矿泉水和含硅比较高的一种矿泉水。因为查到文献说ASD小孩可能不是Hg中毒而是铝中毒。因为现在的疫苗里已经不含汞了,可是还有大量的铝。平时用的锅和烤箱用的铝箔都可能使食物中搀进铝。而含硅量高的水可以和身体中
的铝络合排出体外。加了矿泉水后进步较明显,也可能是和甲基B12的共同作用。
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5#
 楼主| 发表于 2013-4-17 09:03:58 | 只看该作者

re:我们目前加的都是维生素类很安全并且研究证...

我们目前加的都是维生素类很安全并且研究证明很有效的方法,如果要使用chelation之类的方法最好还是又医生的指导。维生素类只要注意A,D不要过量,上面提到的文章有很具体的各种supplement的建议使用量,要根据孩子的年龄和体重有所调整,从少量开始夹起。

我们下一个准备使用的方法是加锌,不过在这之前要测一下头发,看看体内各种金属含量。看看是不是缺锌。因为今年最新的日本的一篇文献提到,他们取了一些ASD小孩的头发测试,发现3岁以前的ASD小孩和正常小孩比起来很多严重缺锌,而三岁以后就不那么明显了,他们提出三岁以前是很重要的时间,如果能及时补充缺乏的锌,也许可以改善病情。
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6#
 楼主| 发表于 2013-4-17 09:32:48 | 只看该作者

re:This is the article...

This is the article that was pulished in Nature:
Link: http://www.nature.com/srep/2011/111103/srep00129/full/srep00129.html

Abstract:
Infantile zinc deficiency: Association with autism spectrum disorders
Hiroshi Yasuda,1 Kazuya Yoshida,1 Yuichi Yasuda2 & Toyoharu Tsutsui1
AffiliationsContributionsCorresponding author Journal name:
Scientific Reports
Volume:
1,Article number:129
DOI:
doi:10.1038/srep00129
Received30 June 2011 Accepted30 September 2011 Published03 November 2011 Article tools
PDF
Infantile zinc deficiency: Association with autism spectrum disorders
Download as PDF View interactive PDF in ReadCube CitationReprintsRights & permissionsMetrics
Elucidation of the pathogenesis and effective treatment of autism spectrum disorders is one of the challenges today. In this study, we examine hair zinc concentrations for 1,967 children with autistic disorders (1,553 males and 414 females), and show considerable association with zinc deficiency. Histogram of hair zinc concentration was non-symmetric with tailing in lower range, and 584 subjects were found to have lower zinc concentrations than −2 standard deviation level of its reference range (86.3–193ppm). The incidence rate of zinc deficiency in infant group aged 0–3 year-old was estimated 43.5 % in male and 52.5 % in female. The lowest zinc concentration of 10.7 ppm was detected in a 2-year-old boy, corresponding to about 1/12 of the control mean level. These findings suggest that infantile zinc deficiency may epigenetically contribute to the pathogenesis of autism and nutritional approach may yield a novel hope for its treatment and prevention.

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7#
 楼主| 发表于 2013-4-18 00:48:03 | 只看该作者

re:目前试过的都是根据dr James Ad...

目前试过的都是根据dr James Adams 文章列出的方案,
                                               
                       
                               
                                       
Treatment Order                                       
We have listed the various treatments in approximate order of what is typically recommended, butevery child is different, and initial assessment by a physician and/or nutritionist may suggest adifferent order. Also, some physicians and nutritionists have their own preferences as to order oftreatment. The key point to remember is to assess the effect of each treatment on each individual,by careful assessment of behavioral symptoms and through testing if possible.                                       
This Summary includes the following sections:                                        [ul]                                                [li]                                                       
  Improve Diet                                                [/li]                                                [li]                                                       
  Food Sensitivities                                                [/li]                                                [li]                                                       
  GFCF Diet                                                [/li]                                                [li]                                                       
  Vitamin/Mineral Supplements                                                [/li]                                                [li]                                                       
  High-Dose Vitamin B6 and Magnesium                                                [/li]                                                [li]                                                       
  Essential Fatty Acids                                                [/li]                                                [li]                                                       
  Gut Treatments                                                       
o Antifungalso Probiotics                                                [/li]                                        [/ul]                                       
o Digestive Enzymes                                        [ul]                                                [li]                                                       
  Amino Acids                                                [/li]                                                [li]                                                       
  Carnitine                                                [/li]                                                [li]                                                       
  Melatonin                                                [/li]                                                [li]                                                       
  Thyroid Supplements                                                [/li]                                                [li]                                                       
  Sulfation                                                [/li]                                                [li]                                                       
  Methylation/Glutathione/Oxidative Stress                                                [/li]                                                [li]                                                       
  Immune System Regulation                                                [/li]                                                [li]                                                       
  Hyperbaric Oxygen Therapy
我们目前只执行了前面几项的部分,已经看到了明显的效果,后面的就要有医生的指导了。他根据家长反馈统计了每种干预手段的有效性,其中排得最高的几项是:1。MB12,63%的人认为有效果,2。p5p B6, 51%的人认为有效,B6+Mg, 47%; 锌, 47%.                                                 [/li]                                        [/ul]                                                                       
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8#
 楼主| 发表于 2013-4-18 01:43:23 | 只看该作者

re:[FACE=宋体]kirkman也有一个...

kirkman也有一个很好的beginner's guide, 链接是:
http://www.kirkmanlabs.com/pdfs/KirkmanBeginnersGuide-Web.pdf
讲了特殊食谱,肠胃问题,免疫系统和biomedical pathways还有重金属。
看到别的老家长推荐的书The first is by Dr. Kenneth Bock, "Healing theNew Childhood Epidemics"
Another book for people newer to biomedical approaches that's a must read is TACA's Journey Guide.  Reading it feels like someone is holding your hand explaining every step you should consider.  
You can receive one for free by attending a TACA meeting, or purchase one for $20 at their site.  The table of contents can be seen if you click on the book to the left.

[/ALIGN]
It very clearly presents beginning supplements in
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9#
 楼主| 发表于 2013-4-18 06:54:37 | 只看该作者

re:[FACE=宋体]关于重金属络合:[/F...

关于重金属络合:
前几天看到的比较安全,经很多家长使用过的方法: Andy Cutler Chelation 他的基本方法是少量多次,很多人放映很有效,且不需医生指导。我们目前还没有采用,如果有用过的,欢迎分享经验。这个方法是普林斯顿大学化学系的Andy Cutler建立的。他自己汞中毒后找不到好的解读方法遂自己创立了这个方法解了他自己的汞中毒。下面是用过的家长的经验,他们以给小孩用这个方法做了40多次chelation,认为有效。如果采用请仔细研究。[/ALIGN]

Using other protocols with higher doses (pulling more than the body can excrete)[/ALIGN]
and / or infrequent doses (not based half life) is likely to result in pulling mercury from various areas of the body and releasing it into the brain.  A very scary thought.

What chelators are used?

The chelators used in Dr Cutler's protocol are ALA, DMSA and sometimes DMPS.
ALA (Alpha Lipoic Acid - an antioxidant)[ul][li]Removes mercury & arsenic from the brain
[/li][li]Does not remove lead
[/li][li]Available over the counter
[/li][li]Must be given every 3 hours (may stretch to 4 hours overnight)
[/li][li]Not to be usedby anyone with mercury exposure in the past 3 months
[/li][/ul]
(including people who have received a flu shot, people who have beenexposed to a broken CFL bulb or have amalgam fillings.)
DMSA (Meso-2,3-dimercaptosuccinic acid)[ul][li]Removes Lead and mercury from organs other than the brain
[/li][li]Does not cross the blood brain barrier.  
[/li][li]Available over the counter
[/li][li]Must be given every 4 hours (can give every 3 hrs with ALA for ease)
[/li][li]Known to cause more yeast issues than ALA alone
[/li][li]Used with ALA, speeds the excretion of metals
[/li][/ul]
DMPS (2,3-Dimercapto-1-propanesulfonic acid)[ul][li]Removes mercury & arsenic, not as good for Lead and not from the brain
[/li][li]Does not cross the blood brain barrier
[/li][li]Available only with a prescription
[/li][li]Must be given every 8 hours (or give with every other ALA dose)
[/li][li]Used with ALA, speeds the excretion of metals
[/li][/ul]

What is a "Round?"

The chelator(s) you select are administered for 72 hours around the clock; according
to their half life.  The 72 hour period is called a "round."  Following a round, you take

at least an equal amount of time off and then repeat.
For example, people typically follow a 3 day on / 4 day off schedule, starting on Friday and continuing through Monday morning.  The balance of the week there is no chelation.   If your child is in school, you should determine the specific hours which will maximize the time you can chelate.  
Rounds can be longer than 3 days, but you should take an equal amount of time off round as you spent on... so a 5 day round requires a 5 day break.  Longer rounds tend to be harder on the adrenals, so watch for signs of adrenal fatigue.
It's been estimated that a child with ASD needs between 100 and 300 rounds to recover.

GETTING STARTED...Deciding what chelator to begin with:

Often people do several rounds with DMSA initially, to lower the total body burden, and then add ALA.  At least one round this way is recommended.

In our case, we did 2 rounds with DMPS and then added ALA, using them both together for 32 rounds.  Then we switched to DMSA to remove more lead.  Most of our rounds lately have been ALA only.

Determining the dose:
Begin with 1/8 mg/lb or less.  For future, gradual increases, consult the RFA group files. Do not change the dose in the middle of a round.  Max dosage is 1/2 mg/lb.

With Caroline, we began with 1/12th mg/lb which was 3mg.  Even after 42 rounds, she is still only at 5mg.

Purchasing the Chelator:
ALA can be bought at any health food store.  Do not use R-ALA, only ALA.  The
main issue is finding capsules small enough to divide into the dose you need.  At a traditional store 100-200 mg capsules will be the smallest you'll find.
Kirkman Labs sells 25 and 50 mg capsules.  
The 25 mg also comes flavored if you prefer.  Caroline does not mind the unflavored.

Pure encapsulations sells 100 mg which is ideal if you are dividing it at home.  See our HOW TO MAKE CAPSULES blog

DMSA is best purchased from Vitamin Research Products

It's available in 25mg or 100mg

DMPS is available only with a prescription which you can get from a physician.


Dividing the Chelator:

If your dose doesn't match the capsule size you have, you'll have to divide them into proper dosages.  But don't despair, it's not as daunting as it may seem!  
I've read several methods for how people divide them, but I think the way I do it is the easiest (obviously).  You're free to be creative.
I use two pill boxes and put the chelator into compartments.  See photos at right

Caroline's dose is 5 mg, and I use a 50 mg capsule (because I want to give her as little filler as possible at night time).

To Administer the dose, I use a miniature oral syringe, see #3 at right for details.  


Insuring you don't miss a dose:

The regular timer on your phone is good for a backup alarm, but it's annoying to have to keep setting it.  I like the App Simply Pill Alert because you can set it for an interval (such as every 3 hours) and when it beeps, you "simply" click "I will take my pill now."  it resets to alert you in another 3 hours.  You can also set any interval, so if you need to do 2 hr 45 min all day to move up the bedtime doses, you can.
Making a schedule plan out your schedule is important for two reasons:1. You want to time the nighttime dose so you won't need to wake up more than once.2. If you stretch the nighttime dose of ALA to 4 hours, your following day's times will need to be adjusted to get the night doses back on track.
For example, here is our typical schedule with ALA every 3 hours (3hr 45min at night)

Day 1

8:30 am / 11:30 am / 2:30 pm / 5:30 pm /. 8:30 pm / 11:30 pm // 3:15 am

Day 2

7:00 am / 9:45 am / 12:30 pm / 3:15 pm / 6:00 pm / 8:45 pm / 11:30 pm // 3:15am

Day 3

7:00 am / 9:45 am / 12:30 pm / 3:15 pm / 6:00 pm / 8:45 pm / 11:30 pm // ....
Notice on days 2 & 3, the daytime doses are shortened to 2h 45 min to ensure that the nighttime doses don't get too late, causing multiple night awakenings.

Required Supplements:

Dr. Cutler strongly suggests you take certain supplements when chelating.  They are:








Some additional recommended supplements are Vitamin A & D, B vitamins (especially mb-12 and methyl folate), Molybdenum & Milk Thistle.


Antifungals:
Because eliminating metals can flare yeast, many children also need an antifungal.  There are many natural antifungals to choose from and this page can help you select the right one for your child.  
A fear of yeast should not stop you from chelating because metals suppress the immune system, causing fungal overgrowth in the first place.  Yeast also binds to metals.  Therefore, chelation is the one thing that can permanently end the battle with yeast.  Parents often report that near round 50, yeast becomes significantly easier to control.  


How do I get started?

If you're serious about starting AC chelation, I recommend joining the Recovering Kids Facebook Group.  There you can find help for many nuances and details specific to certain situations not covered here.  An example is the use of Adrenal
Cortex Extract (ACE).  Children with low adrenal function will need to supplement it.  I wrote about it here.  The group has a file devoted to it.

.You can also buy Andy's book Amalgam Illness at www.noamalgam.com


Heavy Metal Testing:

I'm inclined to say it's not critical.  It's also not a requirement for the protocol.  If you have a child with autism and a poor detox system (which goes hand-in-hand) and that child has been exposed to mercury, what are the chances he or she could benefit from chelation?  Very likely -- and oftentimes one round will show results.
There are only two tests that will help you determine if you should chelate.1. Urinary Porphyrin Test - Checks for abnormal levels of porphyrins in theurine, where different porphyrin levels correlate with body burden ofmercury, lead, or other toxic metals. Performed by a French Lab.  We did this test.
2. Hair test - The recovering kids group can help you order and analyze.  The problem is that the analysis is tricky and involves "counting rules," making it slightly more of an art than a science.  There are many children who benefit from chelation who technically didn't meet the counting rules.  We have a hair test and I never truly figured out if Caroline did or didn't meet them because it just did not matter since we were seeing good results from our rounds.

Note: Never a good idea to do a challenge test (administering large doses of chelator and testing urine for metals being excreted).  It's dangerous and proves nothing. Who wouldn't excrete large amounts of metals after given high doses of

chelator?   Doctors who do that test have gotten a bad name for a good reason.

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10#
 楼主| 发表于 2013-4-18 07:41:11 | 只看该作者

re:[FACE=宋体]如果对做Porphyr...

如果对做Porphyrins测试感兴趣,这是那个法国实验室的网址:
http://www.labbio.net/index.php?page=porphyrines_en
andrew cutler 的chelation protocol的网址:http://www.noamalgam.com/


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11#
 楼主| 发表于 2013-4-20 06:54:42 | 只看该作者

re:[FACE=宋体]今天看到的很有意思的关...

今天看到的很有意思的关于ABA和RDI的讨论:
http://autisticwisdom.blogspot.com/2010/02/i-dont-get-rdi.html?m=1

总结一下就是ABA能交给我们的孩子们很多技能,这些技能会帮助他们在学业上取得进步和成功,可是很多孩子在
情感和心智上的缺失很大程度上还是不能让他们向正常人一样有朋友和亲密的关系。而rdi从儿童发展的基本做起
补上从婴幼儿时期缺乏的情感和心智的发育。rdi从家长做起,帮助星儿们重新发展那些在婴幼儿时期缺乏的情感和心
智的发育。


一个家长理解的ABA,RDI和floortime(DIR)

RDI compared to DIR or Sonrise


Please visit www.rdi4Autism.com for comparisons of ABA, Sonrise and DIR. Every so often I am asked the difference between Relationship Development Intervention and Floortime ( DIR).My experience is mostly of ABA and RDI, but last year I was fortunate enough to spend some time at an RDI conference with a good friend who is also training to be an RDI certified consultant, and at that time she was coming from a DIR treatment background.She shed some light on this very question.  I hope this information is useful to anyone wanting to know some of the comparisons between the two therapies.I want to start by saying, after reading Dr Greenspans book and reading about DIR, that if RDI did not exist then my second choice would be Floortime or Sonrise.  All three are developmental models for children on the spectrum.  Another good program is from Dr MacDonald called communicating partners and is a nice compliment to a developmental program.  All of these programs understand that you need to look at  the childs development in order to address behaviors and thus helping the child overcome their obstacles.DIR ( Floortime) is a developmental program that has the foundational base of stages of development that the child goes through.  They are[ol][li]shared attention/regulation[/li][li]engagement[/li][li]two way communication[/li][li]problem solving[/li][li]abstract concepts[/li][li]building bridges between abstract concepts.[/li][/ol]
Taken from Dr Greenspans book- you are going to put all of your effort and energy into "motivating" him to respond.  You aren't just wanting it to happen--you are going to do a lot of creative interacting in order to tap into his motivation. He won't ever have to respond, but you want to focus so intently on his interests and behaviors that you find the motivational keys These basic principles are where DIR and RDI ( Relationship Development Intervention part.RDI’s foundational base is much more individual to the family and child on the spectrum.  RDI is broken into Parent stages and Child Stages.  Parent stages include education, readiness, apprenticeship and Guided Participation.  Child stages begin at stage 1 and go up past stage 20,  A Child in stage one is somewhere at the cognitive social understanding for dynamic thinking of a 3-9 month old.  Each child stage builds upon the other to mimic typical development.  The crucial difference with the two therapies is RDI is not child led.  RDI places the parent in the original role as the guide for their child on the spectrum.   This is how we parent a typical child,  through a process called Guided Participation.  All societies use this process and this is documented in the study of customs in many books, for example one is titled “Apprenticeship in Thinking” by Barbara Rogoff.  RDI works from the belief that a child on the spectrum is no different then a typical child….other then their brain stopped developing typically at a crucial point.  You may hear people say, My child was fine until so and so….etc.  RDI takes each child’s point where they stopped developing typically,  and seeks to restore their original developmental path.  In essence, a developmental *Do Over*.  Because of this, and because of the model of typical development, parents are taken through the developmental stages within the program and educated on how they, through their role as guide, can faciliate putting their child back on their own developmental track.  What this means….and I have seen it not only with many children, but with my own,  is that once this happens, they go through all the developmental stages and gaps are no longer an issue.  I have found because of this,  there is no need for additional therapies that try to generalize.  A child who is back on their developmental track acts and is cognitively able to perform brain functions for their stage. Each child stage has Foundations, Elaborations, Discoveries, and Milestones.  RDI and developmental research has shown, that within each stage that a child goes through Dynanic Intelligence is being fostered. When I reviewed the 6 base stages of the Floortime model that listed at the beginning, I certainly agree that everything listed is something that every child needs.  However, with RDI,  because there is so much more detail in the developmental stages, Co regulation, Non Verbal communication, and problem solving are part of each and every facet of the RDI program.  No other program breaks down typical development and defines the opportunity to afford our children a DO Over.  While I believe that DIR and Sonrise programs are adequate, they are not comprehensive enough to lead a child back onto typical development as RDI does.  Because of this,  there will always be a sort of *catch up * process with DIR or Sonrise, when a child exhibits behaviors, etc because of lingering gaps.  The goal of RDI is to place a child back on their developmental track within two to four years, in which at that point, their Autism is no longer an obstacle.  For example, with my oldest.  He went through a behaviorial program for 4 years.  He graduated from that program but had many behaviors and was very rigid.  Because my younger son was so severe, and was not benefitting at all from behaviorial therapy, I had to search for alternative ways to help him.  When I saw that RDI was benefitting my younger son, I started with my older son (he was 8 at the time)  My older son, remember, having 4-5 years of therapy already,  tested in stage 1 of RDI.  That is a 3-9 month old level.  I was heartbroken!  Fastforward, This is our Third year of RDI, and he is in stage 7.  What this means is he no longer qualifies as *ASD* since he exhibits no Autistic tendancies.  His Autism has been remediated (no longer an obstacle).  His development has returned to its typical path, and I basically can now watch him grow as a fine young man with minimal intervention (occasionally checking in with his stages to make sure he is on track) because he is back on his developmental track.  He does not need reward systems, or compensations.  He has learned the social intruistic motivation that a typical child his age understands, The difference between DIR and RDI is with RDI you can help your child master their development.  RDI takes the same process that we, as individuals, follow with our typical children.  It would seem silly to think we should walk around and let our typical two year old lead us and hope that we can motivate them to learn from us.  Of course we don’t do this with our children,  we guide them to teach them about our world.  They are our Apprentices and we are their guides. This process is lost when a child has Autism because we are not getting that feedback that we would typically receive.  We start having to compensate and prompt and do all the work in the interactions.  Our language and communication become instrumental.  RDI teaches how to reclaim Dynamic Intelligence that is so intuitive to us….but breaks down because of that lack of feedback and tantruming, etc.  Autism has stopped the developmental process…RDI gets to the root of actually where development stopped, and restarts the process.Through our guidance, children learn that we, their parents,  as their guides, hold the key to understandiing the dynamic world that we live in and that they can borrow our perspective for their motivation…exactly how a typical baby learns perspective taking, coregulation and the many channels of communication.As Dr Gutstein has always remarked,  he simply has taken the research on typical development,  and applied it to Autism.  It works for children without Autism…..recreating the process works for children With Autism! I hope this has been helpful in understanding some of the differences.  Please feel free to contact me with further questions and comments. Kathy Darrow



K.darrow@verizon.net

现在这么多的干预方法,应该采用哪个,或用什么顺序,希望老家长们能谈谈看法
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12#
 楼主| 发表于 2013-5-12 14:04:28 | 只看该作者

re:神奇的骆驼奶偶然看到了生骆驼奶的...

神奇的骆驼奶

偶然看到了生骆驼奶的神奇功效,有杀细菌杀真菌的功效,维c和钙含量高出牛奶很多,最重要的是对于很多乳糖不耐的人,骆驼奶的乳糖很牛奶不一样,可以很容易被人体消化吸收,是最接近人奶的动物奶。这么好的东西,很难不试一试。小宝喝了一月有余。开始是少量,5小勺到现在每天3-4oz,开始的几天一直有绿鼻涕,反应不太好,后来一周以后鼻涕消失,一月有余的感冒流鼻涕好了,语言有小量进步,模仿玩的能力有所提高。

关于骆驼奶的介绍:[ALIGN=justify]BENEFITS OF CAMELS MILK:[/ALIGN][ol][li][ALIGN=justify]Camel's milk is the closest milk to human mother's milk.  Our bodies not only tolorate it well, our bodies thrive on it.[/ALIGN][/li][li][ALIGN=justify]Camel's milk has triple the amount of vitamin C found in cows milk.[/ALIGN][/li][li][ALIGN=justify]Camel's milk has TEN TIMES the amount of antibacterial and antiviral properties found in cow's milk.[/ALIGN][/li][li][ALIGN=justify]Camel's milk contains an insulin like protein that survives the digestive tract and may benefit people with certain forms of diabetes.[/ALIGN][/li][/ol]
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13#
 楼主| 发表于 2013-6-22 01:06:58 | 只看该作者

re:已经有一个多月没记录了,小宝就快3岁了,...

已经有一个多月没记录了,小宝就快3岁了,语言还是很落后,有限的短语,偶尔零星冒出的我要...句子也没再出现。我很担心他会不会永远这个样子,永远不能象正常孩子一样说话。前几个星期它不但没有进步语言和目光对视还退步了。我反思了很久是什么原因造成的,决定给他停掉了骆驼奶。换了一个牌子的鱼油。看到omega3和omega6的比例要适当,应该是4:1的比例,我们之前给他吃的只有omega3,换成了Nordic PropPFA的鱼油,吃了2个多星期了吧,语言又处于缓慢进步的状态,目光对视也好一些了。骆驼奶开始时的作用很好,后来也许起了反作用,小宝对奶还是不耐受的,看来leaky gut还是个问题。最近外公外婆来了,每天和她说的话多了,对他的进步也是有很大帮助的。外婆说让小宝去帮她把纸拿过来,小宝会照做。告诉他纸在垫子下面他也能找出来,这在以前是做不到的。小宝昨天用项链围了一圈,里面放上lego的小窗户,还有一朵小花,一只小猫和一只小狗,还有一个玩具小人和一个高尔夫球,他拿起小狗说汪汪汪,用小狗装了一下球说踢球,拿起小人跳着走到车上又走回来说回家。很好的pretend play,我看了还觉得很可爱的样子。之前和他玩几个小人围在积木旁,我说lunch time他就把小人的投放低说yum yum yum,我说nap time,他就把小人放倒让他们睡觉了,去朋友家玩过蹦床,他第一次敢进去和小朋友一起跳了,玩得很开心,不过爸爸也在里面陪着他他才敢玩。回来第二天我把一个小人放在积木上说jump jump jump,他也拿了一个在旁边也说jump jump jump,还笑了,看来是想起了前一天玩蹦床的事了。
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14#
 楼主| 发表于 2013-6-22 01:23:49 | 只看该作者

re:小宝会骗人了,昨天吃完饭他想下去玩了,说...

小宝会骗人了,昨天吃完饭他想下去玩了,说拉尿拉尿,这个词是他自己发明的,估计是把拉粑粑和尿尿混在一起组了个词,但是也还是有意义的,我忙把他高登上的扣子解开准备带他去厕所,结果他一溜烟跑去玩了,脸上还带着得意地笑,我气急败坏的给他说你忘了狼来了的故事啦,骗人的孩子被狼吃,快去peepee,洗手,他不情愿地被我抓去了。小宝晚上听故事要自己选书了,good night moon是他曾经的最爱,读了几十遍之后会背了,不再要求读了,但是每天要先拿它放在旁边才肯看其他的书,昨天再要给他读,他看也不想再看了。前几星期的新宠是curious george chocolate factory,读了许多遍了,这个语言复杂,他是背不下来的,估计还是处于对食物的热爱,但凡看见书里有人吃东西,一定要看了又看不肯翻到别的页去,我家的这个吃货可怎么办呀。妈妈说每已经有一个多月没记录了,小宝就快3岁了,语言还是很落后,有限的短语,偶尔零星冒出的我要...句子也没再出现。我很担心他会不会永远这个样子,永远不能象正常孩子一样说话。前几个星期它不但没有进步语言和目光对视还退步了。我反思了很久是什么原因造成的,决定给他停掉了骆驼奶。换了一个牌子的鱼油。看到omega3和omega6的比例要适当,应该是4:1的比例,我们之前给他吃的只有omega3,换成了Nordic PropPFA的鱼油,吃了2个多星期了吧,语言又处于缓慢进步的状态,目光对视也好一些了。骆驼奶开始时的作用很好,后来也许起了反作用,小宝对奶还是不耐受的,看来leaky gut还是个问题。最近外公外婆来了,每天和她说的话多了,对他的进步也是有很大帮助的。外婆说让小宝去帮她把纸拿过来,小宝会照做。告诉他纸在垫子下面他也能找出来,这在以前是做不到的。小宝昨天用项链围了一圈,里面放上lego的小窗户,还有一朵小花,一只小猫和一只小狗,还有一个玩具小人和一个高尔夫球,他拿起小狗说汪汪汪,用小狗装了一下球说踢球,拿起小人跳着走到车上又走回来说回家。很好的pretend play,我看了还觉得很可爱的样子。之前和他玩几个小人围在积木旁,我说lunch time他就把小人的投放低说yum yum yum,我说nap time,他就把小人放倒让他们睡觉了,去朋友家玩过蹦床,他第一次敢进去和小朋友一起跳了,玩得很开心,不过爸爸也在里面陪着他他才敢玩。回来第二天我把一个小人放在积木上说jump jump jump,他也拿了一个在旁边也说jump jump jump,还笑了,看来是想起了前一天玩蹦床的事了。妈妈说没次中午去幼儿园借他,别的小朋友都上厕所或躺床上准备睡觉了,就他还在慢悠悠地吃饭。别的小朋友回自己洗手然后抽纸巾擦手,他也不会。在幼儿园里不理别人,每次自己呆呆地蹲在沙堆里弄得满身土。唉,我的傻儿子啊,我怎么才能帮助你呀。
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15#
 楼主| 发表于 2013-6-22 01:35:10 | 只看该作者

re:最近在联系RDIconsultant,准...

最近在联系RDIconsultant,准备正式开始RDI的学习了,看了一些录像,觉得因该会对目光对视和参照大人有帮助。看来洗衣服是他们最常用的一个活动,我们平时也做过,但是不到位,小宝是很喜欢帮我洗衣服的,一件件把衣服放进去,听着我的夸奖得意地关上门按开始再躲到我怀里看洗衣机转,可是我通常就一件件给他,没有等他看我,没有给他机会参照我的指示。不过即使我中间停顿他也只是把头转过来一点等着,并不看我的眼睛和脸,这还是需要学习的,希望RDI是个新的开始,能带来比ABA更多的帮住。
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16#
 楼主| 发表于 2013-8-1 06:11:19 | 只看该作者

re:小宝最近又有进步。昨天我们带他去骑小车。...

小宝最近又有进步。昨天我们带他去骑小车。爸爸拉着小宝,妈妈作指令,妈妈说clap your hands, put up your hands, touch your nose, head, ears, shoulder, face, knees, legs, feet 每一项小宝都笑着看着妈妈,跟着妈妈准确的做对了。小宝最近听指令有进步。只要是他注意的时候发的清楚的指令他都能跟着做对。小宝昨天跟妈妈玩跑步和停下的游戏。能很好的听指令跟上妈妈的步伐。和妈妈的互动很好玩的特别开心。
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