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Jingdong book

视障儿童家长指导手册

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视障儿童家长指导手册

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对于视障儿童来说,父母不能陪他们做一切事情,更不能陪他们一辈子,而且需要别人陪在身边的生活也谈不上是独立的、有尊严的生活。视障人独立外出时,自尊、自信的形象会赢得人们的尊重与理解。一位视障儿童的妈妈对孩子说:“如果妈妈不生你,你就没有机会来到这个精彩的世界,生命是美好的,哪怕有缺陷……因为我和爸爸是最有爱心的,所以上帝委托我们来照看你。”
Author Description

李庆忠,视力残疾,中科院微生物研究所硕士研究生毕业,中学高级教师。现任中国残联理事、中国盲人协会副主席、中国盲人家长委员会主任。曾长期担任盲校教师、教科研主任,在视障教育和康复等方面具有丰富经验,获“全国优秀教师”等荣誉称号。

李晶,北京市盲人学校教师,北京市随班就读教研员、小学随班就读教研组长。在北京市盲人学校从事多年一线教学工作,指导并参与多项课题研究,有多篇论文获奖,曾参与编写《视障辅助技术手册》、《实用盲校教学法》等著作。
Catalogue

第一章 正确认识残疾和视力残疾
1. 孩子属于视力残疾吗?
2. 孩子将来能独立生活吗?
3. 孩子还能成才吗?
4. 为什么要对孩子抱有合理的期望?
5. 为什么说“残疾”是可以改变的?
6. 为什么说残疾人和每个人都密切相关?
7. 为什么不能对孩子过度保护和溺爱?
8. 盲孩子的听觉和触觉格外灵敏吗?
9. 有哪些基本策略帮助孩子健康成长?

第二章 常见眼病和视觉障碍
1. 为什么不能把过高的期望寄托于医疗?
2. 怎样辨别医疗信息?
3. 孩子仅仅是看不清或看不见吗?
4. 孩子的视野有问题应该注意什么?
5. 父母都是健康的,孩子会得遗传性眼病吗?
6. 视障孩子的眼睛保健有哪些注意事项?
7. 低视力孩子还会得近视吗?
8. 高度近视的孩子要注意什么?
9. 弱视和低视力有何区别?
10. 先天性白内障是怎么回事?
11. 孩子患了青光眼该怎么办?
12. 什么是早产儿视网膜病变?
13. 白化病的孩子要注意什么?
14. 孩子患有视网膜色素变性应该注意什么?
15. 视神经萎缩是怎么回事?

第三章 早期发现和干预
1. 怎样尽早发现孩子的眼睛问题?
2. 怎样判断“盲”孩子还有剩余视力?
3. 视障对孩子的身体发育有影响吗?
4. 怎样训练孩子的运动技能?
5. 视障对孩子的智力有影响吗?
6. 怎样训练婴幼儿的感觉能力?
7. 怎样和幼小的盲孩子交流?
8. 孩子在学龄前要做哪些准备?

第四章 生活技能和定向行走
1. 为什么要重视孩子独立生活技能的培养?
2. 为什么要在生活中培养生活技能?
3. 怎样教孩子生活技能?
4. 为什么要多给孩子鼓励而少给帮助?
5. 怎样在生活技能训练中保障孩子的安全?
……
第五章 视觉康复和辅助器具
第六章 教育
第七章 职业
第八章 心理健康和社会技能
第九章 社会资源
附录:《中华人民共和国残疾人保障法》
Book Abstract

11.孩子患了青光眼该怎么办?
青光眼是全球第二位致盲眼病,此病严重威胁着人类的视觉健康。青光眼患者会因眼压升高引起视神经萎缩和视野缺损,是一种不可逆性的致盲眼病。青光眼的临床分型较复杂,不同类型表现差异大,有些患者发病急骤,可在数天内,甚至在数小时内视力迅速下降;有些患者症状隐匿,在疾病的中晚期才发现,视功能已严重受损。无论什么类型,结果都是造成视野及视力受损。对于青光眼的应对策略是早发现、早治疗。青光眼的高危人群包括有家族史、长期使用激素、经常不明原因眼胀、眼疲劳、有糖尿病、高度近视或远视患者。这些人应尽早进行眼科检查。
该病不能治愈,可以通过手术和用药控制眼病发展,控制好的话,有望终生保持有用视力。良好的控制不仅与医生的诊疗技术相关,还很大程度上取决于患者对该病的正确认识和对医嘱的良好遵从。家长要充分认识到青光眼不可逆性危害,并督导孩子按时用药。青光眼导致视功能损伤时,常出现典型的视野损害,如视野暗点、管状视野等,这种情况下孩子会感到行走困难,容易受撞或撞到周边东西。多数病例的中心视力在早期尚可,甚至在晚期管状视野病例也可能有较好的中心视力。
在孩子读书时,将材料放大和增加照明可能有效,但必须考虑视野受损情况。一般患者会出现对比敏感度下降并且容易产生眩光,因此增加读物和环境的亮度、色彩对比度对于改善其视觉效果有一定用处;在强光下外出,滤光镜对改善孩子的视觉效果也会有帮助。可以考虑使用电子助视器,但是有些患者中心视力和周边视野均受损,使用助视器就比较困难。对于有些视野受损的孩子,可以考虑训练其眼睛的扫描和定位技巧,提高视觉能力。对于视力、视野严重受损的孩子,要考虑学习定向行走技术和语音读屏软件等辅助技术。12.什么是早产儿视网膜病变?
早产儿视网膜病变(简称ROP)是发生在未成熟和低体重出生婴儿的一种眼病。ROP患病率在早产儿中约为15N30%。目前对ROP的发病机理尚不完全清楚,一般认为视网膜未发育成熟是关键原因。早产、低出生体重及吸氧是发生ROP的重要因素;维生素E缺乏、心室出血、抽搐、脓血症、宫内缺血、贫血、主动脉未闭等都可能与ROP的发病有关。ROP发病轻者不影响视力,严重者会导致完全失明。
ROP不是先天性疾病,也不是遗传性疾病,而是可以预防和治疗的一种疾病。迄今为止,临床上尚没有能够安全有效控制ROP进程的药物,其防治主要靠控制用氧、定期检查,及时治疗。对ROP早发现早治疗,预后较好;ROP晚期,即使手术获得成功,也仅能使患儿的视力保持在较低水平。因此强调治疗的时间窗,及早发现和治疗是挽救ROP患儿视力的根本途径。
早产儿往往需要吸氧,吸氧提高了早产儿的存活率,但又与ROP的发病密切相关。因此吸氧是把双刃剑,早产儿合理用氧至关重要。中华医学会2004年4月颁布了《早产儿治疗用氧和视网膜病变防治指南》,提出严格掌握给氧指征,选择好的给氧方式,氧疗过程中密切监测患儿血氧饱和度。进行早产儿氧疗必须具备相应的监测条件,如氧浓度测定仪、血氧分析仪等,如不具备氧疗监测条件,应转到具备条件的医院治疗;还要对进行过氧疗的早产儿进行眼科ROP筛查,以早期发现,早期治疗。出生体重小于2千克的早产儿和低出生体重儿在出生后4-6周或矫正胎龄32周时开始进行眼底筛查,对于患有严重疾病的早产儿筛查范围可适当扩大。
……

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