泣血报到：三岁的儿子确诊为自闭症。求建议。

andylzy9

来这里跟各位家长们交流和学习。恳请各位有经验的家长指点。

最近很不幸，儿子被确诊为自闭症。程度中到重度。

刚刚在一个很好的精神测试中心做完了一个4天的综合测试，结果是自闭症。

我的儿子3岁5个月了，还只会说单音字，而且就说那么几个。和别人交流很困难。你教他
东西他基本什么都听不进去，完全交流不了。眼神接触有一些，但是很有限。没事莫名其妙的傻笑。不爱看电视，不爱玩游戏，也不
爱跟别的小孩玩。各方面的发展都严重滞后。

真的无法用言语来形容我们的心情。我们好不容易有了个儿子，却得了这种病。感觉世
界似乎一下子没有了色彩。

我的儿子俩岁前无异常表现。10个月的时候就会指出自己身体的各个部位。那个时候你
问他肚子，屁股，腿，脚丫，眼睛，鼻子等等各个器官在哪里，他都能准确无误的给你
指出来。那个时候他的发展不仅正常，而且超过其他10个月孩子的表现。

俩岁2个月后开始发现他逐渐在退步，可是孩子一般都是螺旋式发展的，所以开始并没
太在意。直到俩岁半以后，开始意识到问题的严重性。也给他做了政府提供的early intervention
的治疗。可是效果不明显。直到最近确诊为自闭症。而且症状是中到重度。

现在孩子在上学区的特教班。每周5天，每天2.5个小时。但是医生说光是学校是不够的。需要进入更强化的ABA训练班。

医生最近还给我儿子做了个血液基因检测，排除了基因的问题。就是说我儿子不是基因
缺陷导致的，基因无任何问题。我和我爱人都是性格开朗，很会社交处事的人。双方家族都无任何自闭症历史。


多谢各位了。希望能和各位与我们同命运的家长们互相交流帮助。我已经在依琳报名了，可排队很漫长。请求各位家长给我推荐北京的以ABA为主的自闭症训练机构。这样在
等待依琳的时候先去那些机构开始训练，可以不用干等着，不会耽误孩子。

我们已经做好了长期战斗的准备。愿神祝福和保佑我们的孩子们！

改变

带着他，慢慢教。

andylzy9

最近为了儿子的事情看资料，发帖子，打电话，每天都要搞到凌晨俩点多才睡觉，第二天还要上班。真的是疲惫不堪啊。
好像一下子所有的业余生活和娱乐都没心情去搞了。

最近常常出现ABA幻觉。开车看到路旁广告什么写着AEA，APA啥的，总觉着那是ABA。

sxy

想说声欢迎新同学，又脚得不合适，谁愿意没事往这个群体靠啊？
都经历过这样的泣血、跪求。
能做好长期战斗的准备，不简单，比俺那时强，至少心态已经端正。
别急，建议先从论坛的导航看起，或者去找个家长培训班之类，充实一下自己，认识一下自己孩子的不足和训练方向，别听到了ABA，就认定这是出路，回头再听到RDI，又迎头去闯，心里有谱了，再去选机构。
看隔壁的贴，你也知道了不少当地的机构，大家的推荐不一定适合你自己的孩子，因为虽是一个谱系，孩子的层次和程度都各不相同，别人觉得合适的不一定适合你。

andylzy9

谢谢你的信息。
另外，我总是看到屏幕右上角有提示说有人给我发消息，等我点击进去除了一个对话框，什么消息也看不到，也看不到到底是谁在给我发消息。
到底是怎么回事。不太会用这里的在线聊天系统，是不是因为我用的是火狐浏览器不支持啊？

请朋友有话给我发到站内邮箱，因为实在不知道怎么进行在线聊天，怕错过你们的消息。

张雁

到用户面板里去看一下“收件箱”。到好文好书推荐里面去找一些初步的书、文。孩子还小，干预得当会很快进步。现在要做的是站在孩子实际的水平上，根据生活需要教他表达和动作。从吃喝拉撒都可以开始的。还有就是给他很多的关注、拥抱、爱抚。带他出去玩，运动。

myChinaHope

我感到你孩子绝对不是基因问题.是打防预针打的.美国自闭症家长都说他们的孩子是防预针造成了自闭症.我想你孩子是在18个月后打的防预症造成了自闭症.尽早干预.越早越好!我儿子是在18个月左右的防预针打后孩子就成现在这样了.多同家长交流.相互鼓励!!!

柴火

下面引用由[U]andylzy9[/U]发表的内容：

现在孩子在上学区的特教班。每周5天，每天2.5个小时。但是医生说光是学校是不够的。需要进入更强化的ABA训练班。
...

看到这句，感觉像是俺们这个穷州附近的特殊服务。俺们就这样，就这2.5小时里，还是师资1:3-4的比例。

andylzy9

下面引用由柴火发表的内容：



看到这句，感觉像是俺们这个穷州附近的特殊服务。俺们就这样，就这2.5小时里，还是师资1:3-4的比例。

事情是这样的。我儿子是年初上的学区的special ed的program。当时还不知道是自闭症，所以制定IEP的时候，就没有按照自闭症来制定，只是按照developmental delay来制定的。刚刚得到了自闭症的诊断，正在和学区的人谈赶紧重新制定IEP，把我儿子换到专门治疗自闭症的班里面去。那个班是每天5个小时。

我在芝加哥附近。IL州政府现在财政窘迫，对3岁以上自闭症孩子的帮助几乎没有。这方面做的很差。只是通过学区来给自闭症儿童提供服务。虽然IL有法律规定保险公司必须cover自闭症的治疗费用。但是不幸的是我的公司是self insured，所以他们可以exemp from IL autism coverage law。
所以现在就形成了我们的困境，在美国ABA太贵了，每个小时50-130美金不等，个人掏钱是根本无法承受的。所以想回中国治疗。或者有哪些在别的州的朋友们告诉我哪些州自闭症的福利好，我就换工作搬过去。

myChinaHope

Try to join some discussions in some yahoo groups. Do your own research. It is Marathon, not sprint. There are many experienced parents there to support you. Be strong. The time, the effort and the money parents spent/paid are huge. Biomedical treatment can help a little bit, but it is so difficult to follow their protocols and very few kids are recovered from biomedical. So we give up biomedical treatment with DAN.  Here are the list of yahoo groups you may need to join and collect some information for the possible treatment for your child. As far as I know many autistic kids were recovered. Recovery is not just a dream. It is possible.
BorreliaMultipleInfectionsAndAutism, mb12valtrex(有5千多members), 你还可以search yahoo using key word "autism" and it will pop up lots of autism related groups. And there is a non yahoo autism group : www.autismweb.com/forum.
andylzy9, if you live in Chicago area once a year American autism conference called Autism One is usually held there and many parents go there. In the conference many best and well known Dr will have speech about their protocols of autism treatment. If I lived in that area I would go and listen in the conference. These Doctors recovered many autism kids. They are the best Dr. in the world regarding autism recovery. But they are different from mainstream Doctors.

Best wishes!

xiaoniuma

你是mitbbs上的那位家长吧，欢迎加入以琳。
ABA一定要给孩子提供啊，这是目前最可靠的治疗办法。如果请人不能承受，可以自己做老师。你的保险有out of network coverage吗？另外保险虽然不cover ABA,但是cover很多所谓的behavior intervention,如果你请的人是social worker, 或者psychologist,是cover的，有的保险cover BCBA的服务，只要你用合适的code.去看看Blessed with autism,作者对付保险很有一套。她的email是blessedassist@verizon.net

andylzy9

下面引用由myChinaHope发表的内容：

Try to join some discussions in some yahoo groups. Do your own research. It is Marathon, not sprint....

Thanks for your advice. I will definitely go to the autism one conference this year. It is in May this year, and the location is very close to my home.
I am trying all the means to help my son. My son is making me sleepless now. Sigh!

andylzy9

下面引用由xiaoniuma发表的内容：

你是mitbbs上的那位家长吧，欢迎加入以琳。
ABA一定要给孩子提供啊，这是目前最可靠的治疗办法。如果请人不能承受，可以自己做老师。你的保险有out of network coverage吗？另外...

没错。是我，是我，就是我。我就是前几天在MITBBS发帖的人。谢谢你还接到我。我也记得你的ID，就是你告诉我来这里的。
现在我在同时走几条路：
1）正在和公司appeal。虽然结果我不乐观，但是我不放弃。同时在家里自己学习ABA的录像给孩子做。
2）和学区director谈尽快吧我儿子放到每天5个小时的自闭症班里面去。
3） 准备回国几个月带孩子去北京的五彩路训练一段。然后等仪琳拍到了去仪琳。这样比在美国自己掏钱花费小很多，效果应该也不差。
你说的那个人我去联系一下。看看他有什么好办法来和保险公司谈。请问那个作者是干什么的？

其实归根到底，事情就坏在我的公司是self insured。

myChinaHope

ABA would also help a lot!
In Autism One conference this year a homeopath Pierre Fontaine will have speech. He recovered many autistic kids. We are seeing him now and in his facebook group to discuss with his other clients. Homeopathy is tricky, a homeopath gives your remedy according to your description about your child. We have consultation with him through Skype from home. Some parents describe their kids so well and he gives correct remedy at the first time which is amazing! With just one remedy their kids got recovered in several months. We are not so lucky yet. I still try to find the accurate wording to describe my son. You can read some discussions about him at http://www.autismweb.com/forum/viewtopic.php?f=4&t=23735&p=167969#p167969. We are also seeing another Dr. Stewart in Austin and he speaks in Autism One each year in the past. He is not money hunger like other DAN doctors and the medical services he provides is covered by insurance company. And his protocol is so easy to follow. His yahoo group is neurosensorycentersforkids. You can read lots of positive feedbacks from parents in his yahoo group. Getting information from Autism One will be a good start and you can meet many experienced autistic parents there and they will share their experience of their journey. Many of their kids are doing well through these treatments. And these parents actually are experts.

Good Luck!

andylzy9

下面引用由myChinaHope发表的内容：

ABA would also help a lot!
In Autism One conference this year a homeopath Pierre Fontaine will have...

For Pierre Fontaine, he bill his service to medical insurance or mental health insurance?
how about the DAN doctors, they bill them to medical or mental health?
thanks again for your information!

xiaoniuma

短你了

下面引用由andylzy9发表的内容：

没错。是我，是我，就是我。我就是前几天在MITBBS发帖的人。谢谢你还接到我。我也记得你的ID，就是你告诉我来这里的。
现在我在同时走几条路：
1）正在和公司appeal。虽然结果我不乐观，但是我...

xiaoniuma

homeopathy and DAN are both medical.

下面引用由andylzy9发表的内容：


For Pierre Fontaine, he bill his service to medical insurance or mental health insurance?
how abo...

andylzy9

下面引用由xiaoniuma发表的内容：

homeopathy and DAN are both medical.

that is good news! 最近和mental health的人搞的太头疼了。
请问homeopathy and DAN的花费medical是应该cover的吧？

xiaoniuma

跟普通医生没什么不一样，只要你有out of network coverage.

下面引用由andylzy9发表的内容：


that is good news! 最近和mental health的人搞的太头疼了。
请问homeopathy and DAN的花费medical是应该cover的吧？

myChinaHope

For our insurance Pierre Fontaine and DAN are not covered. Most of the Doctors you will see in Autism One are not participating in any insurance  network. They have long waiting list. All of our spending is from our own pocket except Dr. Stewart who is an exception and is a surprise for me.
DAN is not working for us and several of our close autistic families. DAN doctors are truly money hungers and they are eating/sucking these autistic families blood with temporary progress. Therefore we don't waste my money any more with them.