苦尽甘来---世界上最好的DAN!医生：儿子生物疗法记录

kwenma2

我给EAN妈妈的回话现在搬到这里，保存Functional Medicine的信息：

关于 Functional medicine，我以前没有听说过，今天我查了一下网页，看了一下，感觉有一些新的认识。总体感觉像是从饮食，营养补充，身体调理方面系统地进行。当我看见他们的一个ＣＡＳＥ　ＳＴＵＤＹ，感觉他们这个方法跟ＤＡＮ！方法的前部分（禁食，营养补充，自然排毒（ＤＥＴＯＸＩＦＩＣＡＴＩＯＮ，调养胃肠道等等）很像，用的补充物都是差不多的。所以感觉它跟ＤＡＮ！方案还是有很大一部分交叉。不过因为没有详细资料，不知道他们系统化，层次化方面是如何作的。感谢ＥＡＮ妈妈的信息，我得好好学习一下。因为我看它的一个案例，对我们小子的低肌肉张力的处理方面很有借鉴作用。因为上个月开完ＤＡＮ！会议，我开始意识到小子的低肌肉张力方面的问题需要作手处理，所以后来读了一些书和资料，并且将原来医生建议的，后来停了的ＣＯＱ－１０又加回去了。最近觉得他的能量方面有较大进步。回头我会在我的自留地写一下这方面的体会。 看了它这个案例，很受启发。

另外对于基本知识，可以看：
http://www.functionalmedicine.org/
http://www.functionalmedicine.org/eduprog/webinar_series.asp

找到了Dr. Kostinec的PPT的讲演稿:
http://www.asclsmn.org/Julie/2008clc/wednesday/1_Kostinec_presentation.pdf

内容我看完了，总体来说，她用的是DAN！方案(生物疗法)。可能具体的或者思路方面她也参考了Functional Medicine。我觉得家长们要是看了她的Slides，会对DAN！方案有进一步了解，而且她小孩的Case是很多Case之一。我看过很多类似的Case,只是小孩不同，个人情况不同，所以在补充物方面不一样。但是走的过程都差不多。从禁食开始，到营养物的补充，到胃肠道的调理，酵母菌的控制，最后到排毒。现在她推荐高压氧。她的小孩也作了排毒。我觉得她做得比较好，有可能跟她本身是医生有关。她很容易看出什么对小孩起作用，这一点对一般家长来说非常难。而且她可能在有些营养物方面考虑点比较深，能够从整体代谢，各方面的配合角度出发来选择适合她小孩情况的补充物。

我觉得看了她的文章，还是有收获的。最后一张Slides有她的Email Address.我打算写一封Email给她，问一下Functional Medicine的事。

kwenma2

Muscle Weakness Found in Some Autistic Children

My PT send me this article about low muscle tone (低肌肉张力)and mitochondrial disorders
http://www.washingtonpost.com/wp-dyn/content/article/2008/04/13/AR2008041301617.html

SUNDAY, April 13 (HealthDay News) -- New research suggests that muscle weakness in a child with autism may point to an underlying genetic defect that's causing mitochondrial disease, which means the muscles don't get the energy they need.

Conversely, it's possible that the mitochondrial disease may also play a role in the development of autism, perhaps by preventing the brain from getting the energy it needs to perform properly, the researchers noted.

"In large studies of kids with autism, about 20 percent have markers of mitochondrial disease in the blood," explained Dr. John Shoffner, an associate professor of biology at Georgia State University and president of Medical Neurogenetics.

Shoffner recently completely a retrospective analysis of 37 children with autism spectrum disorders and found that 65 percent of these children -- children who had been referred to him because their doctors suspected additional problems -- had mitochondrial defects.

He was expected to present the findings April 13 at the American Academy of Neurology's annual meeting, in Chicago.

Mitochondria are found in every cell of the body, with the exception of red blood cells, according to the United Mitochondrial Disease Foundation (UMDF). Mitochondria are vital to survival, because they make oxygen available to cells and metabolize food into energy for cells to thrive. Defects in mitochondria can lead to cell injury, or even cell death, according to UMDF.

Symptoms of mitochondrial disease depend on which body system is affected but may include muscle weakness, loss of muscle control, poor growth, heart disease, diabetes, developmental delays, an increased risk of infection and more.

Shoffner said that the mitochondrial energy production system is the only one in the body that requires two genomes to work -- genes inherited from both the mother and the father, and genes exclusively from the mother. "To make this system work, it requires a lot of genes. Hence the opportunity for lots of problems," said Shoffner, who added that there are several hundred known mitochondrial disorders.

Twenty-four (65 percent) of the children included in this study had genetic defects in their skeletal muscles. However, that doesn't mean that 65 percent of children with autism likely have mitochondrial disease. This was a select population of kids with autism, ones that had specifically been referred, because their doctors suspected a problem.

But, Shoffner pointed out that as many as one in five youngsters with autism spectrum disorders have shown signs of mitochondrial disease.

"If you're talking about 20 percent of kids with autism, that's a whole lot of children, and may represent an important segment of the autism spectrum disorder population. And we may be getting a foothold into the underlying cause of autism spectrum disorders," he said, adding, "This is a really important step forward that lets us put effort into understanding the mechanisms of disease."

"This study is a call to action. We need to know what is the real prevalence of mitochondrial conditions in children with autism," said Geraldine Dawson, chief science officer for Autism Speaks. "The more we can identify these subgroups of kids, the more we're going to parse apart the many forms of autism. This gives us clues to etiology."

"If we find that mitochondrial disease is a prevalent condition, having a better understanding of the kinds of symptoms that children may show if they have it might be helpful for parents," she said.

Shoffner said these findings may also open up new avenues of research into potentially more effective treatments for the future.

kwenma2

Mitochondrial Disease

What are mitochondria?
A mitochondrion (singular of mitochondria) is part of every cell in the body that contains genetic material. Mitochondria are responsible for processing oxygen and converting substances from the foods we eat into energy for essential cell functions. Mitochondria produce energy in the form of adenosine triphosphate (ATP), which is then transported to the cytoplasm of a cell for use in numerous cell functions.

What are mitochondrial and metabolic diseases?
Mitochondrial medicine is a new and rapidly developing medical subspecialty. Many specialists are involved in researching mitochondrial diseases, including doctors specializing in metabolic diseases, cell biologists, molecular geneticists, neurologists, biochemists, pathologists, immunologists, and embryologists. Much of what we know about these diseases has been discovered since 1940. In 1959, the first patient was diagnosed with a mitochondrial disorder. In 1963, researchers discovered that mitochondria have their own DNA or "blueprint" (mtDNA), which is different than the nuclear DNA (nDNA) found in the cells' nucleus.

Mitochondrial and metabolic medical conditions are now referred to as mitochondrial cytopathies. Mitochondrial cytopathies actually include more than 40 different identified diseases that have different genetic features. The common factor among these diseases is that the mitochondria are unable to completely burn food and oxygen in order to generate energy.

The process of converting food and oxygen (fuel) into energy requires hundreds of chemical reactions, and each chemical reaction must run almost perfectly in order to have a continuous supply of energy. When one or more components of these chemical reactions does not run perfectly, there is an energy crisis, and the cells cannot function normally. As a result, the incompletely burned food might accumulate as poison inside the body.

This poison can stop other chemical reactions that are important for the cells to survive, making the energy crisis even worse. In addition, these poisons can act as free radicals (reactive substances that readily form harmful compounds with other molecules) that can damage the mitochondria over time, causing damage that cannot be reversed. Unlike nuclear DNA, mitochondrial DNA has very limited repair abilities and almost no protective capacity to shield the mitochondria from free radical damage.

What are the symptoms of mitochondrial diseases?
The types of mitochondrial diseases are categorized according to the organ systems affected and symptoms present. Mitochondrial diseases might affect the cells of the brain, nerves (including the nerves to the stomach and intestines), muscles, kidneys, heart, liver, eyes, ears, or pancreas. In some patients, only one organ is affected, while in other patients all the organs are involved. Depending on how severe the mitochondrial disorder is, the illness can range in severity from mild to fatal.

Depending on which cells of the body are affected, symptoms might include:

Poor growth
Loss of muscle coordination, muscle weakness
Visual and/or hearing problems
Developmental delays, learning disabilities
Mental retardation
Heart, liver, or kidney disease
Gastrointestinal disorders, severe constipation
Respiratory disorders
Diabetes
Increased risk of infection
Neurological problems, seizures
Thyroid dysfunction
Dementia (mental disorder characterized by confusion, disorientation, and memory loss)

How common are mitochondrial diseases?
About one in 4,000 children in the United States will develop mitochondrial disease by the age of 10 years. One thousand to 4,000 children per year in the United Sates are born with a type of mitochondrial disease.

In adults, many diseases of aging have been found to have defects of mitochondrial function. These include, but are not limited to, type 2 diabetes, Parkinson's disease, atherosclerotic heart disease, stroke, Alzheimer's disease, and cancer. In addition, many medicines can injure the mitochondria.

What causes mitochondrial disease?
For many patients, mitochondrial disease is an inherited condition that runs in families (genetic). An uncertain percentage of patients acquire symptoms due to other factors, including mitochondrial toxins.

It is important to determine which type of mitochondrial disease inheritance is present, in order to predict the risk of recurrence for future children.

The types of mitochondrial disease inheritance include:

nDNA (DNA contained in the nucleus of the cell) inheritance. Also called autosomal inheritance.
-- If this gene trait is recessive (one gene from each parent), often no other family members appear to be affected. There is a 25 percent chance of the trait occurring in other siblings.
-- If this gene trait is dominant (a gene from either parent), the disease often occurs in other family members. There is a 50 percent chance of the trait occurring in other siblings.
mtDNA (DNA contained in the mitochondria) inheritance.
-- There is a 100 percent chance of the trait occurring in other siblings, since all mitochondria are inherited from the mother, although symptoms might be either more or less severe.
Combination of mtDNA and nDNA defects:
-- Relationship between nDNA and mtDNA and their correlation in mitochondrial formation is unknown
Random occurrences
Diseases specifically from deletions of large parts of the mitochondrial DNA molecule are usually sporadic without affecting other family member
-- Medicines or other toxic substances can trigger mitochondrial disease

How are mitochondrial diseases diagnosed?
Diagnosis of mitochondrial disease can be invasive, expensive, time-consuming, and labor-intensive. Therefore, evaluation is not taken lightly. Doctors experienced in diagnosing and treating these diseases will take either a step-wise approach to diagnosis or, in some centers, the evaluation takes place over a few days. The evaluation includes a combination of clinical observations and laboratory tests.

Under ideal circumstances, the evaluation will produce an answer. However, even after a complete evaluation, the doctor might not be able to confirm a specific diagnosis or put a name to the disorder. In many cases, however, the physician will be able to identify which patients do and don't have metabolic diseases.

Mitochondrial disease is diagnosed by:

Evaluating the patient's family history
Performing a complete physical examination
Performing a neurological examination
Performing a metabolic examination that includes blood, urine, and optional cerebral spinal fluid tests
Performing other tests, depending on the patient's specific condition and needs. These tests might include:
-- Magnetic resonance imaging (MRI) or scan (MRS) if neurological symptoms are present
-- Retinal exam or electroretinogram if vision symptoms are present
-- Electrocardiogram (EKG) or echocardiogram if heart disease symptoms are present
-- Audiogram or BAEP if hearing symptoms are present
-- Blood test to detect thyroid dysfunction if thyroid problems are present
-- Blood test to perform genetic DNA testing
More invasive tests, such as a skin or muscle biopsy, might be performed as needed and recommended by your doctor.

How are mitochondrial diseases treated?
There are no cures for mitochondrial diseases, but treatment can help reduce symptoms, or delay or prevent the progression of the disease.

Treatment is individualized for each patient, as doctors specializing in metabolic diseases have found that every child and adult is "biochemically different." That means that no two people will respond to a particular treatment in a specific way, even if they have the same disease.

Certain vitamin and enzyme therapies, along with occupational and physical therapy, might be helpful for some patients.
Vitamins and supplements prescribed might include:

- Coenzyme Q10
- B complex vitamins: thiamine (B1), riboflavin (B2), niacin (B3), B6, folate, B12, biotin, pantothenic acid
- Vitamin E, lipoic acid, selinium, and other antioxidants
- L-carnitine (Carnitor®)
- Intercurrent illness supplement: vitamin C, biotin

Diet therapy, as prescribed by your doctor along with a registered dietitian, might be recommended.
Antioxidant treatments as protective substances are currently being investigated as another potential treatment method.

Important: Specific treatments should always be guided by a metabolic specialist. Patients should not take any of these supplements or try any of the treatments unless prescribed by a doctor. Taking inappropriate supplements or treatments might lead to delays or failure in establishing an accurate diagnosis.


What is the prognosis or outlook?
Once a patient is diagnosed with a specific mitochondrial disease, the patient's medical problems have already been identified or can be identified with proper testing so treatment can be initiated to relieve symptoms and delay the progression of the disease.

There is no way to predict the course of mitochondrial diseases. They might progress quickly or slowly, even over decades. The disease might also appear stable for years.

For parents considering having other children, genetic counseling is available. Although complex, prenatal testing is only available for a few types of mitochondrial disorders. Please discuss your concerns with your doctor.

kwenma2

如下是Dr. Bobbi Kostinec 回的电邮。我问她关于Functional Medicine和DAN!的问题。

Hi Kwenma!

DAN and functional medicine are basically doing the same thing. The functional medicine just lays out a format for docs to think through and lay out a plan.Both are trying to get to the root of the problem and correct it versus putting a "bandaid" on the symptom.

I just came back form autism one and another DAN doctors training. Basically, for the mito problem i would suggest a couple tests your family doctor can run. For mito stuff it generally means adding carnitine, coq10 and a couple other things to start. Each child is different so getting some of the gene SNPS (single nucleotide polymorphisms) can be helpful. These will suggest where the pathways need more nutritional/supplement support.(functional medicine docs will be more familiar to this as this is just entering the DAN arena)

Distended belly means gut issues. Generally, one would start with a good look at the diet and make changes, add probiotics (kirkmanlabs.com or Klaire labs) also digestive enzymes

prebiotics are things that the "good bacteria" in the gut are supported by to enhance them and encourage growth of the good bacteria.

I hope that is helpful!

Also, if you have blue cross blue shield there are some VERY helpful tests from greatplains  lab that give a TON of useful info to guide a plan.

Please feel free to keep in touch. Most the stuff we learn that is important we have learned from another mom!!

Happy day,

Dr. Bobbi :)


===============================================================================================================
    Hi Dr. Kostinec,

    My friend attended the autism conference almost 10 days ago. And you gave the presentation about:
    Changing the course of Autism Using an upstream Model of Healing

    My son is ASD and doing DAN! protocol almost 2 years. He has almost same symtom as Jake.
    for example, low energy level, low carnitine (from lab), high oxidative stress, and I suspect he has mitochondrial disorder because he has very low muscle tone. Meanwhile his belly always distended a lot.

    I have questions for you:
    (1) What's the difference of DAN! protocol and functional medicine?
    (2) How you deal with he mitochondrial issue?
    (3) How you deal with the distended belly?
    (4) What's the possible prebiotics? I did not know this before? Do you have any recommendation?
    (5) What brand of probiotics you recommend?

    Any responses would be very much appreciated!

    Thanks,
    Kwenma
      

kwenma2

对小BABY感兴趣。最近由于他周围的很多老师都怀孕生孩子，他对BABY的兴趣就大起来了。最近两周去MALL，很喜欢去看别人的BABY。还去主动问人家叫什么名字，多大了等等。眼睛里充满了欢乐。去儿童乐园玩得感觉跟正常小朋友一样，玩得有AFFECT，还主动要和别人并排滑滑梯，要“TWO BY TWO”。然后他笑着告诉我，“THREE BY THREE”就是挤屁股了：-) 然后玩了一会，就问我爸爸呢？告诉他后，跑去爸爸那
里，又要问爷爷在哪里？没有告诉他，逗他说爷爷掉了，他自己用眼睛搜索，找到了爷爷，眼睛发光，跑过去喊爷爷。跟一个小女孩并排滑滑梯后，小姑娘走哪里，他就跟着人家；人家爬另外一个地方，他就跟着爬；小姑娘回身看他，知道他跟着，就一边友好的笑一边跑到其它地方去爬，小子也看见她笑，也跟着她，有一点主动去一起玩的意思了。总之，是我第一次感觉他在繁杂的环境中那么PRESENT， ENJOY，跟以前是很不一样了。而不想以前那样从最开始发呆，坐在器材上半天不动，懒散，到后来动是要动，但是没有多少AFFECT， 没有别的小朋友那样因为玩了什么好玩的东西而自我感觉兴奋，高兴的自然的AFFECT。希望他能一直这样下去，保持这样，就说明他的感觉统合系统开始往正常的方向发展了。反正最近打算每周带他到这个地方来(因为他喜欢--这是他主动要求星期天要到这里来，他说因为这里有PLAYGROUND)，加强他的进展。

上周在学校表现很好。据说在PLAY GROUND，跟另外一个小孩主动轮流推对方荡秋千。SUSAN说那天在学校过道里面，他看见4个大班(就是SUSAN下午带他去玩的那个大班)的小朋友走过，小子主动跟他们每一个小朋友打招呼，然后第二个小朋友说要HIGH FIVE，小子立即回应；最后一个小朋友说午饭后在我们班上见；小子也是SPONTANOUSELY给予回应说午饭后在班上见。SUSAN说他在跟小朋友的整个交流过程中首先是主动发起
打招呼，其次每次回应都是SPONTANEOUSLY，没有任何延迟，简直就是耳朵对耳朵的自然交流。她说这是一个MILE STONE。现在我觉得小子跟大人的交流问题不大，因为大人跟他交流会有一些方法，但是跟小朋友的交流(语言开始的随机交流)就是跟不上正常小朋友的节奏，所以跟不上，除非和小朋友一起玩DUCK DUCK GOOSE和BOARD GAME的游戏等有预见性的游戏和音乐动作等他有AFFECT和能互动外。所以SUSAN觉得今天这个是一个里程碑。我希望如此。我觉得这也跟他感统方面的改善有关，特别是他的听觉系统的信息处理和整体的感觉统合有很大的关系。我近半年来认为小子听觉和视觉方面的问题严重阻碍了他的发展，特别是社交方面的发展。比如他的视觉范围非常狭窄，视觉跟踪和眼球转动的能力很差，他的视觉只是集中在正前方很小角度的范围，所以当小朋友站在他的侧面的时候，他不可能像我们一样能马上感觉到。同时他的听觉信息处理不好，因此别人说话，他可能要过好一会信息才能到达大脑。再加上他们这种孩子天生语言表达也不太好，需要更长的反应时间来组织语言，因此很可能要么他压根就不知道别人在对他说话，要么反应慢，跟不上步伐。所以如上方面严重阻碍了他的社交方面的发展。除了基本的语言训练外，我觉得针对小子应该有视觉和听觉方面的训练，这也就是为什么在做了一段时间的研究后(几种听力训练方法)，我推进DLS听力训练的原因。同时因为这个DLS听力训练也会对他的视觉方面的问题有改善(VISUAL SPATIAL)，所以我觉得如果他这方面的生理本身问题得到改善，他会有另外一个很大的飞跃。

另外昨天去时碰见小子的助理，她告诉我小子有进步，最大的进步在于以前去PLAYGROUD，不太爱参与，只是懒懒的，不想动；现在是什么都想去玩，很愿意动了。(这个跟我在家里的观察一致，就是DLS后的改变，说明他的感统方面的确改善了一些)。

kwenma2

医院体检

去医院作体检，在休息室我在办事，叫他去跟休息室的小朋友玩，那里有一个鱼缸，正好有一个父亲带着一个５岁男孩和一个１岁多的男孩在那里。小子走过去，先跟那大男孩一块看鱼，然后去看那个小男孩，他叫人家ＢＡＢＹ。于是吸引了大男孩。他问人家叫什么名字，人家也反过来问了他。

然后当护士叫小子的名字时，他高高兴兴地进去了，人家喊他，他问人家：“你叫什么名字？”然后顺利在护士的指导下脱掉鞋子，量了身高体重。然后测试眼睛，护士叫他念视力表，让他挡住一只眼睛，认色盲的表，基本上我只是偶尔重复了一下护士的话，他都顺利照办。进了房间开始测听力，这个比较麻烦，要他突然听见里面有声音就要说“ＢＥＥＰ　ＢＥＥＰ”，他不懂，他听的开始可能也没有声音，反正他跟护士不能配合起来，护士在调频道似的。于是没有测出。于是护士换另外一套测听力的要插入耳朵，小子不喜欢。于是我建议还是用第一套带耳机的。然后我放慢声音告诉小子，如果听见耳机里面有声音，就“ＢＥＥＰ，ＢＥＥＰ”，说了两次，没想到他理解了，结果十多次声音响起来，他完全说对了。然后护士给他量舌下体温，听心跳等都没有任何问题。

最后护士说：“今天要打几种疫苗。”　
我说：“我不想今天打，打算推迟。”
护士问我：“为什么？”
我说：“他打了疫苗反应不好，他是自闭症。”
护士一下没有反应过来，说：“你在说一遍”
我说：“他是自闭症。”
护士说：“怎么可能？”于是他对着小子喊：“过来”。小子马上就过来了，
她开始不断问小子问题：“你叫什么名字？”“你几岁了？”“你在那里上学？”“你的老师是谁？”小子全部顺口答出而且伴有眼神。
护士作了一个手势，意思是“这也算自闭症吗？”，然后护士说，“我还真不敢相信。要是，也就是高功能的吧？”
我苦笑.然后她说：“那他还有什么问题呢？”
我说：“问题还多，比如语言还有一定问题，社交技能，注意力，低肌肉张力等等。当然他的认知学业方面没有多大问题。”
我想，大众对ＺＢ了解太少了，现在的ＺＢ是一个很宽的频谱，不是他们想象的完全不理人的那种了，只有我们家长心里清楚那三大核心问题，一天不解决，一天脱不了ＺＢ，虽然普通人很难在短时间内辨别出来。

gmom

Kewenma,

我想你儿子可以终身免疫苗，只要你的DAN!给你出个证明就行。我儿子就这么办的，学校就不要求他打疫苗了。

kwenma2

下面引用由gmom发表的内容：

Kewenma,

我想你儿子可以终身免疫苗，只要你的DAN!给你出个证明就行。我儿子就这么办的，学校就不要求他打疫苗了。

Thank you, gmom!

kwenma2

到学校去跟他的新老师和SUSAN一起开会。以前感觉学校跟我们家庭的教育是分开的。好像学校按照学校的作，老师跟我们之间没有多少交流，所以我让SUSAN去参与。现在换了一个新的班主任老师，第一次跟具体管儿子的老师就具体问题坐下来交流，感觉是不一样的。这个老师是作ABA的，比较懂ZB，她现在正在修特教硕士，比较好学，方法也比较灵活。总体感觉我们三个人是在同一条路上(ON THE SAME PAGE)，很多理念和处理方法(ABA， FLOORTIME或者其它方法)很一致。她认识到的小子在她班上的问题跟我想提出的完全吻合。我感觉找到了一个对路的知音似的。目前她在给孩子们上CIRCLE TIME(围成一圈老师讲故事或者做游戏等等)时就刻意配合小子的感统方面的需要，过一会会叫所有孩子站起来跳几下(简单游戏)，或者大家改变一下坐的方式，或者叫我们小子帮忙作一件事情(比如找出故事书中的某件东西等)，或者要一个小朋友回答问题(就要我们小子回答等)，安排跟他最近的位子给小子，总之想尽方法在上大课时抓住小子的注意力，让他积极参与。而且减弱AIDE(助理)的作用，主要由她来控制/提示小子，而不是助理。从长远目标来说，助理应该消退。在其它活动时间，也要设置DTT的(多重复的TRIAL)项目在自由活动时间运行。而且她还想给小子加一个SOCIAL LANGUAGE GROUP(社交语言组)的课，让另外一个或者两个孩子跟小子配对玩，她指导。这样在SUSAN不来学校的三天又她来带这个活动。我们在谈到提示帮助时关于什么PROMPT最合适(NON-VERBAL， VISUAL)和PROMPT是在什么情况下应该从低到高，什么情况下是从高到低，哪些活动设计来帮助小子愉快地参与方面，我们简直就是太对路了。没有想到的是她希望我将国内的幼儿小班拍手操的DVD拿到学校，让她们班上的孩子每天做操。通过孩子学做操，可以叫我们小子当MODEL(因为他会了，而且DVD是说的中文12345678)，大家跟他学，让他在活动中培养他的自信心，交流欲望，注意力，同时也是不错的SENSORY DIET。所以一个小时的会议还是满成功的，让我觉得这次学校总算跟我们对上号了，小子在学校有这个老师来主管，效果应该不一样了。

kwenma2

学会理解

周末在家，一早小子就跟我闹开了。他早上很早就醒了，我还想让他睡，但是他不想睡了。于是我说妈妈还想睡。但是他就不愿意，非要我也起来。我不起来，于是就对上了。
我说：“妈妈累了，还想睡觉。”
他说： “妈妈不睡。”
我说：“你累了，想不想睡觉啊？”
他说：“想”
我说：“那妈妈累了，想不想睡觉啊？”
他说：“不想” (同理心不行)
我说：“妈妈也想睡觉。”
他说：“妈妈不累。”
我说：“你怎么知道妈妈不累呢？你又不是妈妈。妈妈累。”
但是他知道是这样，还是一根筋，又哭又闹要我起来，还用武力拉开我的被子，再来拉我起来。
我告诉他：“妈妈想睡觉，你应该让妈妈睡觉。你可以又两种选择：
(1) 陪妈妈睡觉；
(2)不想睡觉，你可以下楼找奶奶吃饭；
哭没有， 拉妈妈也没有用”
他还是哭闹。于是我说：“你再哭就TIME-OUT”， 他还是哭。于是我抱着他到房间的TIME-OUT的地方，他当然不想TIME-OUT， 于是挣脱跑到床上哭。我又重申：“哭没有， 拉妈妈也没有用”。看他的哭声小了一点，于是我抱住他，他趴在我的身上哭了，这个时候的哭带有委屈和撒娇的感觉，我于是又乘机告诉他，他应该理解妈妈，妈妈累，还想睡觉。你睡了9-10个小时，妈妈才睡了6个小时。你应该让妈妈高兴(如果你爱妈妈)。应该学会找到解决问题的办法， 既能满足你，也能满足妈妈；既能让妈妈高兴，也能让你高兴。两种选择等等。尽量用他能够理解的语言教他。

其实我知道他的问题是：
(1) 同理心不行造成比较容易想控制别人的行动，如果不满意，就容易不高兴。
(2) 而且解决问题的能力差。
(3) 在不高兴时不能REGULATE自己。

当然我知道如果他真的能懂上面的三条，他就不自闭了，也就不会哭闹，将来也就不会有任何行为问题了。但是这就是我们每天要努力的方向。
所以今天我是故意要制他一下的。让他感觉你不能控制别人，要从别人的角度想问题，哭闹也没有用，同时要学会想办法，学会自我安慰，REGUALTED等等。于是听了我慢慢跟他说(我不知道他听懂了多少)， 他渐渐平静下来了。并且似乎理解了一些，说：“妈妈只睡了6个小时，不够”等等。
(To be continue)

jmc0623

好文章

kwenma2

学会理解(2)

第二天早上，他又醒得早。在被子里躺了一下，问我：
“妈妈，几点了？”
“才七点，再睡一会吧？”
于是又躺了一会，就一下子翻身起来说：
“妈妈，我要穿衣服了。”
我说：“你不睡了吗？”
他说：“我睡够了。”
我一想，试试他吧？于是我说：“妈妈还想睡。”
他说：“妈妈才睡了6个小时。”
我说：“对呀” 于是我把衣服给他穿上。又给他拿了裤子和袜子，叫他自己穿。他自己穿上裤子，袜子我帮了一下。
这是我突然想继续试验下去，于是我说：“妈妈还想睡觉。你先穿好鞋子，再去PEE-PEE(尿尿)，刷牙，洗手，再下楼找奶奶吃饭，说妈妈还要睡觉。吃完饭让奶奶给你洗脸”
我一股脑儿地说完，问他：“好不好？”
没有想到的是他答应了，然后乖乖的去拿鞋子穿。一边穿鞋子，一边问我：“妈妈，我穿反了没有？”
我躺在床上说：“我不知道。妈妈看不见。要是穿进去舒服，就没有穿反。”
他说：“穿着舒服”
我说：“那就没有反。”
看他穿完了，我说：“去PEE-PEE吧。妈妈还要睡觉。”
于是小子高兴地去了，听见他先PEE-PEE了，然后把厕所冲了，然后开始要刷牙了。听见他说：“我拿着我的牙刷了。”又说：“我拿着我的杯子了。”
又过了一会，他跑到我的门口，问：“妈妈，我的牙膏呢？”
我说：“在插牙刷的架子上。”
于是又听见他使劲拿似的。我想：他的牙膏很少了，不容易挤出来。我干脆起来跑过去帮他，正好看见他费劲的取牙膏。牙膏卡在牙刷洞里了。于是我帮他取出来，挤出牙膏。然后忘不了叮嘱："刷完牙，再洗手，然后下楼找奶奶。” 我又回到床上。
其实事情演变到这个时候，我是假装睡觉，耳朵听着他这边的。
于是听见他刷牙，漱口，开水龙头洗手。他又屁颠屁颠跑过来：“妈妈，冷水好冷好冷哦！”
我暗笑，说：“放点热水不就行了吗。”其实他肯定知道这个办法，只不过想跟我说一下他的感受。
洗完手，听见他一边下楼，一边说：“今天我自己洗的手，自己下楼”
下楼后，脚步欢快，听见爷爷叫他，问他怎么一个人似的。他好像跟爷爷说了两句话(可能是告诉爷爷，妈妈还在睡觉吧？)，于是他又跑到一楼的楼梯口，叫：“妈妈，你还在上面吗？”
我说：“妈妈还在楼上睡觉呢。”
于是他开始吃早饭。

我非常欣喜：
(1) 看来昨天的教育还起了作用。
(2) 生活自理能力有进步。
(3) 去洗手间后，还不断地跑过来跟我有多个回合的交流。

这个时候，我感觉小子长大了一些了。当然我觉得他解决问题的能力差，需要我们提供一些解决办法，多次实践后，他们能学到。
当然忘不了下楼去夸他，还发动大家夸他懂事，能干。ABA嘛，对POSITIVE BEHAVIOR要不断地表扬，鼓励， 加分。小子受用。回家后，还跟他温习好的表现！！
(To be continue)

kwenma2

学会理解(3)

在一周后的星期天早上，儿子想起床，我还睡意浓浓，小子主动提议：“我起床，妈妈睡觉！”我当即同意。于是小子自己穿衣服，PEE-PEE，刷牙，洗手，高高兴兴地下楼吃饭。等他弄完来叫我起床，我已经又睡了一觉，作完了一个梦。感觉小子有点长大了，懂得体贴妈妈了。

哈哈月亮

看到上面两段真让人欣慰,心理暖洋洋的.你小子现在可是连蹦带跑的进步啊.
我们儿子也是生活自理方面很弱,下面我也应该加强他在这方面的训练,随时向你汇报成绩.

kwenma2

生活中有很多机会可以拿来跟孩子互动。下面就是一例，本来我可以一下子就打了蚂蚁了事，但是我们也可以利用这些小机会，增加互动的机会。

逮蚂蚁（小小地板时光实例）

那天家里有一个大的黑蚂蚁爬上了窗帘，我看见了，就告诉小子。
我说：“看，一只大的黑蚂蚁。”
小子说：“妈妈打蚂蚁。家家的蚂蚁坏。”
我装出很害怕的样子，缩着脖子，说：“哎呀，我害怕，我不敢打，还是你打吧？”
小子马上起反应了，说：“不，不，我好害怕哦！还是你打！”　那神情可真好看，呵呵。
我说：“你也害怕呀？”
他说：“妈妈，我害怕，我害怕，我不打”
我说：“真要妈妈打呀？我还是有点害怕呀。”作出为难的样子。
小子说：“妈妈打，妈妈打”　还是迫不急待地说。
我说：“好嘛，我们用纸来抱住它。”
于是我放慢动作，伴随音乐，“答，答，答。。。”，慢慢靠近蚂蚁，小子全神贯注，我们对视一下，我说：“打？”，小子同意说：“打！”
“啪”，“我逮住了”我兴奋地说，小子眼睛放光。
我说：“现在怎么办？”
小子说：“丢到厕所里面去。”
于是我们两个迅速跑到厕所，把蚂蚁丢到厕所里面，小子马上冲了厕所，小子说“我们把蚂蚁冲下去了！”
“耶！”我欢呼！

其实我在上述这次互动中还应该多一些回合。比如说到害怕，可以让他形容一些有哪些地方害怕（心里怕？手怕？。。。）以及为什么？还可以让他给我表演一下他夸张的害怕的各种动作等等。只是当时还有些怕蚂蚁爬来不见了，呵呵。。。所以如果经验丰富的地板时光人员可以把交流回合延展得很长。希望上述这个小例子可以给家长一些ＨＩＮＴ。

kwenma2

下面引用由哈哈月亮发表的内容：

看到上面两段真让人欣慰,心理暖洋洋的.你小子现在可是连蹦带跑的进步啊.
我们儿子也是生活自理方面很弱,下面我也应该加强他在这方面的训练,随时向你汇报成绩.

哈哈妈妈，过奖了。哈哈的情况我随时都在看，觉得他的程度不错。我觉得２－３岁的孩子还是游戏互动更重要，让他们觉得跟你在一起有趣，拓宽他的兴趣。至于要学多少东西，我认为还是其次。但是模仿要天天教。希望哈哈快快进步。

binfeng2000

这个蚂蚁的故事很好玩啊.你要是有这个胆子,就让蚂蚁爬到你手上,让他看看到底蚂蚁可怕不可怕.有一次我把蚂蚁逼上了一段树枝,把树枝一头立起来,这蚂蚁就会往高处爬去,等它快到我手上时,再掉头过来,这样可以玩好长一会儿,这时候你就基本上看到孩子的注意力会是全神贯注的了.

我建议你不要把小蚂蚁杀死,因为以后的话,他应该会读到很多的蚂蚁的故事和电影的,你不如给以后做个铺垫,把它放回室外,这样你就可以延伸话题,说蚂蚁住在那里啊,吃什么啊,给以后关于蚂蚁的游戏做些话资准备.我本来就准备了一个养蚂蚁的装备,要不是我LP反对,我们家早养蚂蚁了.

哈哈月亮

觉得你上面的话很有道理,我们这里端午节,哈哈在四天不上课,这个四天我天天陪他玩,沿着他感兴趣的方向玩,发现他这几天情绪很好,进步也快,特别是和我的眼神交流,经常有闪光的地方,还主动跑来要和我玩那些他感兴趣的游戏,让我看到了希望.今天上课和老师配合也很好.情绪真的很重要啊,这两天哈哈就是在一个良性循环的状态,高兴了,就什么都愿意做了,发现他理解力也有所提高,也有点会小坏了.

kwenma2

“报复”

早上起来后陪他吃饭，一直跟我说话，他爸爸说他屁话多。后来谈到要去度假，
爸爸就说：“如果你最近表现不好，你就不能去，我们其它四个人去。”
小子说：“我们五个人都要去度假！” 反应很快，没有半秒钟的延迟。然后爸爸上班去了。我觉得他心里肯定有点过不去，
他回过头来对我说：“要不我和妈妈，爷爷，奶奶去度假，让爸爸在家！” 说得我们全笑起来了。
想得还挺美的，而且怎么感觉他有点“报复”爸爸的意思呢？

kwenma2

下面引用由哈哈月亮发表的内容：

觉得你上面的话很有道理,我们这里端午节,哈哈在四天不上课,这个四天我天天陪他玩,沿着他感兴趣的方向玩,发现他这几天情绪很好,进步也快,特别是和我的眼神交流,经常有闪光的地方,还主动跑来要和我玩那些他感...

他有主动跟你交流的愿望了，这是最重要的。顺着这个思路走下去，按照地板时光的想法，多增加交流的回合，如果还可以，再自然地插入一些认知的东西（比如大小，左右，前后，冷热，分类（蔬菜，水果，交通工具，动物）等等），我相信他能够很快地理解的。这比在桌面上教要自然得多，而且他也不抗拒，能够愉快地接受，而且觉得跟你在一起有趣，这样他的兴趣面就会拓宽。因为我们都知道很多孩子在最开始时几乎对什么都没有兴趣，家长很头痛。如果是这样，那就从他感兴趣的地方着手或者你故意制造一些惊喜来反复吸引他作为出发点。这样他会逐渐对周围的更多的东西感兴趣，逐渐培养出一些主动性。因为我们小子就是这样走过来的，所以有一些感触，就在这里罗嗦一下了。