JASON的故事

lilili

在海洋公园的鹿园

kwenma2

你现在越来越省了，只贴图不说话啦[EM15]

lilili

140楼有说话!

kwenma2

下面引用由lilili发表的内容：

140楼有说话!

哈，看见了，简直想死我们啦！[EM14]

lilili

Jason最近的语言进步蛮大的,所有的人都感觉到了.不知是我们加大了他的语言治疗的原因还是他现在上的夏令营(七月上旬至八月上旬)的功劳,或者是他自身的发展和一段时间的努力和积蓄开始爆发了,也许是兼而有之.
夏令营里学的儿歌,回家来能完整的背下来,还抑扬顿挫,有板有眼的.吐词特别清楚.任何时候你叫他背,他就眼睛盯着你背,有那么一点show off 的意思. 用手机录下他背儿歌,他竟然还重复放,自我欣赏,当然是很自我表现了.
每天上午的夏令营,也能问到一点东西了,不像以前一问三不知,要么不回答,要么乱回答.
不过还是不会主动的告诉我,回答得也很简单,多数时候是我给他两个答案,他选一个正确的回答我.说他回答得正确是因为我有他们夏令营的每天活动世间表,我知道他每天都干了什么,先干什么再干什么.
语言的提高带动了社会性,最近几次带他出去玩,每次回来后再问他 :我们去了哪里,他都能记得,所以我们准备开始写社交故事了.
  
我和J爸感受最深的是他对家人的依念.
今年J哥哥去了蒙特利尔的航空夏令营, 哥哥走了没两天,他就开始念叨 ‘ge ge went space camp’后来就发展成自问自答 ‘Do you miss ge ge?’  ‘yes’ 这周是哥哥不在家的第三星期.星期一就听他说 ‘I miss ge ge’昨天中午接他回来,把他从车上抱下来时,他眼睛亮亮的看着我说’we are going to Montreal pick up ge ge ’ 于是我说’Do you mean : Are we going to Montreal pick up ge ge? Do you miss ge ge now’只见他急急的回答说”yes”
Jason现在对第二天的日程安排开设感兴趣,睡觉前总问明天干什么,而且还会记住. 最可爱的地方是他睁大眼睛望着你的表情,目不转睛充满期待,在这一刻真让你怀疑他的ZB.

回过头来看过去的一年,我们为Jason所安排的训练和相关辅助性治疗,应该是有成效的. 上个月,我们又去见了诊断Jason的专家, 她每九个月要见一次Jason. 这次,她对Jason的进步非常满意, 说比她所预见的好很多. 这不还要把Jason的事登到她所在机构的月报上. 这个月Jason就该上学前班了,   
1.去年九月开学就正式不用尿布,成功完成了大小便训练. 小便控制得不错, 在家里,在外面都没问题,几乎很少尿裤子,正逐步形成晚间不用上厕所. 大便平均每两天一次,基本正常,当然是习惯在家里.
2.在本地区机构ABA 每周在八到四小时.现恢复到六小时. 他的老师对他总是赞不绝口, Jason也很喜欢她. 每月费用在一千加圆.
3.家庭教师训练基本技能, 每周六小时.我们非常幸运能有这么一个老师,有幼儿教育经验,也懂特殊儿童, 而且特认真负责. Jason跟她持续学三小时都可以. 大部分时间在我们家上课, 今年上半年,请她去幼儿园辅导Jason,每周两小时. Jason跟他学了好多上学需要的技能,比如写字(数和字母),画线,描图,玩游戏,等等. 按两个老师的说法, Jason上一年级是没问题的,当然只就智力而言.
4.语言治疗大约每周有两次. 实在是太贵了, 语言治疗师要140加元每小时, 助理语言治疗师也要80 到100元. 政府基金提供了12次(每次一小时). 前后我们共用了三家语言治疗师,现已稳定于其中的两家.   
5.OT共做了六次, 用政府基金. 给Jason做OT的的确有水平.
6.PT才开始接触,如果保险公司能批准的话,争取每周一次.
7.暑假期有八次体操课,这期家长不能陪同. 六个女生加Jason,共有两个教练. 更多的时间Jason是在到处跑到处跳,反正体操房很大,随他吧. 最后一次,看他做热身运动时,倒还跟班玩,后来训练时也不时有正常表现. 开学了又跟下一班练,教练们还是很有耐心和爱心.
这里体操房很多,还有好几个从东欧来的世界冠军做教练. 竞争好激烈.
8.音乐课也要随开学而开始了. 过去的一年里读了三期, 唱些儿歌,初学123,可家长陪同. 下期将会有键盘学习,家长也可陪的. Jason应该有音乐天赋的,能记很多儿童歌曲的曲调和旋律,有节奏感. 音乐课里的三盘CD和另外常听的150首儿歌,冷不丁什么时候他给你唱一段, 还挺象的. 可能也有ZB的缘故吧.
9.游泳继续保持每周三次以上,但久无突破,相反最近两周还不太想在大池游. 本月将由游泳教练一对一学习.
10.单车进展还是有的,但仍须不时扶着.在他的单车后面绑了一根木棍,他自己是可以骑几米吧.不定时地每周骑车有三次吧,每次半小时.
11.家庭教师带了她的几个学生 学了八次冰球课, 她还找了些热心人来做陪练. 这不就得置行头了,好在小孩子们的东西用的时间不长,长大长高了就得换,二手的东西倒也行. 天气一转冷,也没什么事好做,上冰球课也赶这里的潮流.
这个月Jason就该上学前班了, 虽然他的新老师已跟我们有些沟通,而且他还专程去Jason的幼儿园观察,但是这个重大变化确使我们紧张害怕. Jason能适应新环境吗?
[IMGA=0,absMiddle]http://www.flickr.com/photos/44496180@N08/4958640887/in/photostream/[/IMGA][IMGA=0,absMiddle]http://farm5.static.flickr.com/4131/4958640887_8b39979dd2_s.jpg[/IMGA]

JJmum

为什么JASON才四岁就要上K?

Ean妈妈

也有更新了！真棒！Jason的生活很丰富！进步也很大！我一直想加音乐课都没有实现。那段Show Off儿歌的描述好像在说我的老二，Jason实在可爱！

liubihua138

JASON近来好棒啊,阿姨给你鼓掌,看着你妈在一边乐着,阿姨也跟着你妈乐着.
JASON妈要多多记录啊!
不久,我们可能又要回一趟老家了,不听话有爷爷给摔了一跤,不轻啊!
不知你们什么时候会回老家啊!

lilili

这里四岁上低年级学前班,并非是强制性的. Jason在幼儿园可以再呆一段时间的,但根据过去的一年看来,利用率并不高,还有太贵也是一个原因,一年的费用要将近10K.我们也没有其他家庭成员帮忙,再加上我们上个月去看的专家也觉得Jason可以去学前班试一试,综合考虑还是上免费的学前班,省下的幼儿园费可以用到ABA和语言治疗上. 即使按已非常精简了的计划,一年也得有这些预算 : ABA 13K, 家教 7K, 语言7K, DAN医生 5K,其他的还有音乐课,体操课,游泳课,社交课,夏令营,滑冰课,加起来也要差不多5K.负担也不轻,再供一栋房子的价钱.
在一个全民享受医疗保健的国家,原来所设计的理想境界,已为官僚主义破坏,真正需要的服务和治疗反而得不到,或者不能及时得到,大量的税收(预算最大块)被浪费. 更由于这已经存在的制度,还影响了医疗保险.都知道六岁以前是治疗和干预的最佳和有效期,你却没有政府和保险公司的资助.

lilili

下面引用由[U]JJmum[/U]发表的内容：

为什么JASON才四岁就要上K?

我们这里分JK和SK,JK是自愿的,四岁上.SK是必须要上的,五岁上.

lilili

下面引用由[U]Ean妈妈[/U]发表的内容：

也有更新了！真棒！Jason的生活很丰富！进步也很大！我一直想加音乐课都没有实现。那段Show Off儿歌的描述好像在说我的老二，Jason实在可爱！

Ean美妈也来了,我们基本上是只报喜不报忧的,问题一大堆,不写罢了.
多写孩子好的方面给自己鼓劲,因为我自己太需要动力了.

lilili

下面引用由[U]liubihua138[/U]发表的内容：

JASON近来好棒啊,阿姨给你鼓掌,看着你妈在一边乐着,阿姨也跟着你妈乐着.
JASON妈要多多记录啊!
不久,我们可能又要回一趟老家了,不听话有爷爷给摔了一跤,不轻啊!
不知你们什么时候会回老...

好妹妹,你也来给我鼓劲了.
你的地里我也是每次上来必去的.只是帮不上什么忙.祝福爷爷早日康复.
如果我们回国,我一定会告诉你的.

JJmum

Jason的进步真大, 而且活动特别的丰富多彩!

lilili

今天是JASON学校跟我们家长预约的见面日. JASON上午有语言治疗和ABA,只好将比萨烤好了带到车上吃,因为我们的时间是中午12 :45.每个家长的见面时间是15分钟. 我们是45分钟,副校长和资源老师,及班主任一起和我们见的面, 我们事先准备了两页纸的问题,.
1.        校巴. 这是我最担心的问题,主要是安全问题,就是早上从校巴上下来后到教室和下午放学后从教室到校巴这一段距离,我怕JASON走丢.原本学校设想的是给 JASON找个校巴伙伴负责带他上下车,最后在我的强烈肯求下, 学校答应将有成人护送离校到车和接车并监督到教室. 学校还将安排固定的位置给他,靠近司机,校巴伙伴在车上管他(不知如何小孩管小孩).另外老师给准备了一个校巴号码让我们贴到JASON的书包上. 为防止JASON跑掉,他老师给JASON照了张像,会发给每个老师,发动群众是有必要的.我们最担心JASON在上下车时丢掉,看样子学校的办法还是可以的.
2.        因JASON有特殊饮食要求,可能需要用微波炉热中午饭.学校没有安排,只得用保温瓶了. 服药须医生的许可, 我们可办到. 学前班会有一位成人午餐监督,还有两个较高年级的同学辅助,届时会有一学生专门管JASON. 我们提出可以做义工,来帮助午餐.学校的意见是过一个月再看.
3.        JASON的语言相对他自己来说是有了很大的进步,可和同龄的NT小孩还是没法比的.和别人有了冲突不会告状,被欺负了表达不了,只会哭,学校将在开始阶段安排一个教学助理,每天两小时帮JASON.
4.        大小便. 我们告诉了老师一些JASON的习惯, 在要离开教室的时候,我们带JASON去参观卫生间,不想这小子居然真的还使用了厕所.  
5.        感统问题.JASON可能会容易疲劳,他会躺下,或做其他动作,特别是老师讲故事的时候他可能会坐不住,我提到了在夏令营的时候他们给JASON的一个象吸管样的东西让他咬,帮助他提高注意力, 资源老师立即知道我说的是什么,并说她会想办法,我自己也正在联系夏令营的主管.
6.        作息时间和上课时间. 学校表示可以灵活安排,任何对他有利的安排都可以.他们的目标是让JASON在四个月内达到和其他的NT小孩同步.从下星期起, JASON先试读星期一和星期三两个半天.再下星期试星期一和星期三两个全天.然后再作定夺.

从目前的情况看,选择上学应该是对的,至少从目前来看老师和学校是认真的,而且在想办法,老师特别是资源老师有一些ZB学生经验. 这个真的很重要.在幼儿园反而没有任何特殊的照顾,老师是一个刚毕业的小姑娘,自己也没有小孩,别说ZB小孩连NT小孩的经验都没有,另一个老师稍有经验却又怀孕了,精力和体力上有点跟不上.所以这一学年,特别是今年上半年,在幼儿园有点浪费时间,收费还死贵,我们又没老人帮忙,我又不敢把工作辞了,不送也不行.很有点鸡肋的感觉.

liubihua138

亲爱的JASON在羡慕你们那良好的资源外,同时也挺心痛你的,即要上班,还要把孩子们照顾好,且还要每天接送,真的不容易!

要是有个老人帮你们一下,那该多好啊!

lilili

Autism in some boys linked to missing DNA
By Sheryl Ubelacker, Health Reporter, The Canadian Press
TORONTO - Researchers are a step closer to understanding why autism spectrum disorder affects four times as many boys as girls.
A study led by a team of Toronto scientists has discovered that males who carry specific genetic alterations on their X-chromosome have an elevated risk for developing autism spectrum disorder, or ASD.
“The male gender bias in autism has intrigued us for years and now we have an indicator that starts to explain why this may be,” said co-principal investigator Stephen Scherer, director of the Centre for Applied Genomics at Toronto's Hospital for Sick Children.
The researchers, whose work is published this week in the journal Science Translational Medicine, found that about one per cent of boys with ASD had mutations related to the PTCHD1 gene on the X-chromosome.
"Hearing that it's in one per cent doesn't get a lot of people excited," conceded Scherer. "But it gets geneticists really excited because there's a lot of genes involved (in ASD)."
Boys inherit one X-chromosome from their mother and one Y-chromosome from their father, explained Scherer. "If a boy's X-chromosome is missing the PTCHD1 gene or other nearby DNA sequences, they will be at high risk of developing ASD or intellectual disability.
"Girls are different in that, even if they are missing one PTCHD1 gene, by nature they always carry a second X-chromosome, shielding them from ASD. While these women are protected, autism could appear in future generations of boys in their families."
Autism spectrum disorder affects an estimated one in every 165 children. The neurological disorder ranges in severity, but often includes problems communicating and interacting with others, unusual patterns of behaviour and intellectual disability.
An estimated 190,000 Canadians have ASD, which is on the rise worldwide, says Autism Society Canada.
The isolation of genetic alterations on the X-chromosome within a percentage of individuals with autism follows a number of recent genetic discoveries by Scherer and others that are moving science slowly but surely towards a better understanding of the causes of this baffling disorder.
To conduct this study, researchers analyzed the gene sequences of 2,000 individuals with ASD, along with others with an intellectual disability, and compared the results to DNA sequencing from thousands of healthy control subjects.
While the PTCHD1 mutation occurred in one per cent of males with ASD, it was not present in the DNA of thousands of healthy male controls — and sisters of males carrying the same mutation seemed unaffected by autism symptoms.
"The deletions and other mutations seem to be related only to disease in the boys," said co-principal researcher John Vincent. "They have sisters who have the same mutation but are healthy."
Vincent, head of the molecular neuropsychiatry and development lab at Toronto's Centre for Addiction and Mental Health, isn't surprised to find another gene on the X-chromosome involved in autism.
"It's another one in the list and I think it will be one of the most common ones, so parents will be able to have their children tested," he said. "Particularly if they have a son affected, it will be important for them to know if it's caused by a mutation at or around PTCHD1."
"And if it is, they'll know that future (male) children would be at risk."
"There are lots of women in the population," added Scherer, "who are carrying this (genetic variation) that are predisposed to having boys with autism."
The scientists believe the PTCHD1 gene plays a role in a neurobiological pathway that delivers information to cells during brain development, and this specific mutation could disrupt crucial processes and contribute to the onset of autism, said Vincent.
Having a test for the altered DNA would mean children could be diagnosed at a younger age, allowing behavioural therapies to be started sooner, he said. "So the earlier you can catch it, the more effective the therapies can be."
Calling the discovery "incredibly important," Suzanne Lanthier of Autism Speaks said the research provides solid evidence about what's behind ASD prevalence rates being skewed towards males.
"This is the first time we're seeing some hard science findings to start to explain why boys are more affected than girls," said Lanthier, executive director of the research fundraising organization and mother of an 11-year-old boy with ASD.

Asked if such genetic links to autism put an end to the contentious notion that childhood vaccines — in particular, the measles-mumps-rubella inoculation — may trigger autism, Lanthier responded that ASD is manifested in many ways "and it doesn't lay to rest potential environmental causes."
"And what the research is pointing to more and more is that there are some genetic underpinnings and in some cases environmental triggers that set off what we know genetically."
"It certainly doesn't mean that we should stop doing research on environmental causes. By no means."

liubihua138

美女妈妈,你贴了一大页
能否给个中文版的?

lilili

还嘴

J爸带Jason去公园玩.
Jason突发奇想要坐那种小婴儿坐的秋千,其实从去年夏天开始他就改坐大孩子秋千了.
爸爸说:"No,this one is too small for you." 人家一转身指着大孩子秋千说"This one is too big for you."
还是有时候你我混淆.


我在给人家煮苹果当零食,他等不急了要吃.
我说"Not yet,let's wait"
他说:Yet yet,Let's eat.

最近从迷厕所演变到厕所一定要分男女,再到给人分男女.
某日,正在家里念念叨叨"妈妈is a women, 爸爸is a men, 哥哥is a boy, Jason is a boy."
哥哥正好打他那儿路过,说道:"哥哥is a big boy, Jason is a little boy."
呵呵, 人家不干了,立马回道" Jason is a big boy, 哥哥is a little boy."

kwenma2

Jason很可爱哈！

lilili

K美妈也还没睡啊.