一个美国妈妈帮助孩子攻克“阅读障碍”的经验
作者：Sarah Paige Ryan
翻译：雷春
前言：阅读障碍、写作障碍、数学学习障碍，以及因此引起的部分多动症或注意力不集中现象，在人群中的普遍程度远没有受到重视。家长和老师往往指责孩子“笨”或“不用功”，而不是通过了解他们的特点和学习差异来帮助他们克服困难。希望这个美国妈妈的经验，对一些家长有启发。Sarah是我的朋友，很感谢她为了我的特殊教育群里有这方面困难的孩子家长写的经验总结。
第一阶段：我的孩子的阅读和写作都很困难，为什么会是这样？
如果你聪明伶俐的孩子在学校的学习困难重重，你要相信你的直觉、探索问题、深入研究、寻求答案。你不可能等待你孩子的老师或者学校领导告诉你孩子出了什么问题。至少在美国，老师在孩子的阅读和写作障碍方面的训练极少。而且，学校也不愿意花时间和精力研究和了解孩子学习方式的差异。家长可以做到的是：
1. 访问国际阅读障碍协会的网站：https://dyslexiaida.org/ 然后做自测题：https://dyslexiaida.org/screening-for-dyslexia/ 最好全家人都做一下测试！阅读障碍有很强的遗传因素，是一种神经性的学习差异。如果一个家长有阅读障碍，孩子有阅读障碍的可能性会很大。从网页上可以下载一份很有使用价值的36页的《阅读障碍实用手册 》。
2. 学习由Sally Shaywitz写的《克服阅读障碍》。这是阅读障碍方面最重要的一本书。你不需要从头到尾地细读，但有些章节对判断和认识阅读障碍很有帮助。它完全颠覆了我对阅读障碍的理解，使得我们全家更有信心迎接挑战。
3. 开始记录孩子的学业和遇到的挑战。用一个大的文件夹，保存所有孩子带回家的功课。孩子对作业的要求是否明白？孩子能完成作业吗？如果孩子做错了作业，明白为什么吗？她知道错了以后，有办法改正吗？对于孩子每天的功课理解和完成程度进行评估非常重要。特别是小学阶段，如果她不掌握基本的技能，很快会越来越落后，但她可能几个月、甚至几年地长期掩饰自己的迷惑和不解。这也是一个和孩子开始适龄谈论学校的好时期。她对学校的感受如何？如果孩子感到学习困难，她可能会知道，也愿意告诉你。对于家长，这可能是一件非常困难的事。找配偶、朋友或者治疗师谈谈，能减轻很多心理压力。
4. 与孩子的老师、治疗师和专家进行会谈。问尽可能多的问题，带一个朋友或者家人来帮助做笔记。记录所有的问题。如果孩子在公立学校，而且已经在针对阅读障碍的RTI（治疗反馈）疗程里，要求每三周提供一个报告。并且学会读懂报告中的评估数据和进展。比如，很多学校用DIBELS评估学校的阅读水平。测试信息和成绩表的解读都可以在网上找到。不要依赖于老师来解释其意义。
第二阶段：我的孩子可能有阅读障碍、写作障碍、数学障碍、多动或注意力不集中
1. 如果你怀疑你的孩子有阅读障碍或相关的学习障碍，去做评估非常重要。有两条途径。你可以找一个教育心理学家做私人的评估，也可以向你学校或学区的特殊教育团队要求测试。
2. 私人测试：医疗保险通常会包括这类测试。儿科医生可以推荐，也可以问医疗保险公司。如果想找到当地的信誉好的教育心理医生，可以向其他家长打听，也可以去当地IDA网页上找“Service Provider Referral List ”。比如，IDA的在落基山分支网，这个名单相当全面，而且所有的医生都是经过严格审查的。在看医生前，要了解所有可以做的测试，并和医生讨论什么测试医生会做。比如，IQ智商测试曾经是评估阅读障碍的主要工具，但现在，学区不再使用，有其它很多测试可以更具体地帮助你了解孩子的优势和劣势。
3. 学校测试：如果你要求学校测试孩子，而且他们同意，那就太棒了！但是，很有可能他们会说太早了，或证据不足，等等。一定要以书面的形式提要求（下载、填写并打印这个表格 https://www.understood.org/en/school-learning/evaluations/evaluation-basics/download-sample-letters-for-requesting-evaluations-and-reports）。一旦他们收到书面要求，必须在60天内答复。在那期间，与一个特殊教育Advocate维权人面谈（在网上搜索educational advocate，比如： http://www.wrightslaw.com/info/advo.referrals.htm）。你可以在当地的IDA找，网上搜索，或者向其他家长打听。一个维权人可以帮助你了解整个过程，一个好的维权人了解学区，知道学校或个人能做什么。同时要和当地的父母互助群取得联系（或者自己成立一个）。查找和“阅读障碍”有关的所有信息，充分了解本州的州级教育部门的网站上关于阅读障碍的有关条款。“Understood (https://www.understood.org/en) ”的网页上有大量的有用信息，可以要求他们发送电子信息。
4. 要理解，由于孩子的年龄，可能得不到很明确的诊断结果。但是，你会对孩子的大脑和身体有更加充分的了解，从而知道如何最有效地帮助她。还要知道，即使联邦教育部警告过他们，很多学区仍然拒绝使用“阅读障碍”这个词！如果所有的证据表明，孩子确实有阅读障碍，就一定要坚持要求使用它。这时，一个Advocate维权人会很有帮助。
第三阶段：我的孩子有“阅读障碍”！啊呀妈呀！我该咋办！！！！
1. 深呼吸。一切会好的。在过去的50年间，对“阅读障碍”进行了深入的研究，有很多帮助阅读障碍的孩子学会阅读的有效方法。
2. 一个有阅读障碍的孩子，需要：循序渐进的、积累性的、连贯性的、多种感知性的、音素为基础的、直白清晰的干预教程，通常叫做Orton-Gillingham 法，或者以OG为基础的方法，包括 Lindamood-Bell、Barton、Wilson和West Virginia Phonics。同时，他们还需要每天的、系统性的、有经验的专业人士的帮助和支持。首先要了解是否可以得到孩子所在学校的支持，还是需要雇用私教。无论如何，一定要寻求高质量的干预措施，其它活动都是其次。私教可以在当地的IDA找，还可以通过Learning Ally (https://www.learningally.org/)。
3. 如果孩子是在校外确诊的，你需要在学校寻求504或IEP帮助。孩子在确诊“阅读障碍”后，要向Advocate维权人或者其他家长了解具体步骤，开始申请IEP的过程，这个过程肯定需要一个Advocate维权人和你一起去学校协商。学校有法律义务提供切实有效的干预措施，但是，很可能他们没有合适的人或系统帮助你，你必须竭力争取。开始做一个 IEP档案，把所有相关的事情都加以记录。
4. 有两本书会让你学会欣赏孩子的很多强项，并对他们的未来 保持乐观的态度：Ben Foss写的《阅读障碍的成就计划》以及 Brock和 Fernette Eide写的《阅读障碍者的优势》。
5. 用适合孩子年龄的沟通语言和孩子谈论她的学习方式。我的女儿知道她和别人的读书方式不同，而且这是很正常的。她需要花更多的时间，而且需要更加努力，但是她同时也在学习坚韧不拔的精神。她聪慧、有能力，和她爸爸非常相似。与孩子解释她的特点，让她感到自己有战胜困难的能力，至关重要。我们要尽可能的避免“残疾”这个词。
6. 努力为孩子找一个自已有阅读障碍的导师mentor。Eye to Eye (http://eyetoeyenational.org/) 是一个全美的组织，可以帮助有阅读障碍的高中生找到大学生年龄的导师mentor。如果孩子比较小，通过和其他家长的交流，帮助她找一个合适的导师mentor。
7. 感觉好些了吗？
第四阶段：良好状态
1. 以下是孩子纳入正轨的表现：你的孩子有一个好的老师帮助她，并且阅读和写作都向着目标进步。你在使用Learning Ally、有声读物和其它的有帮助的科技一起欣赏故事书。你每个月都和孩子的老师见面，真诚地了解孩子的进展情况和目标。你的家庭可以正面地讨论阅读障碍和读书这个话题。你有一个支持体系。你的孩子也有一个支持体系。你没有让读书学习占用孩子的所有时间（也就是说，她能参与体育、音乐和任何她喜欢的项目，去公园玩、和朋友玩，做一个真正的孩子！）。你知道，你是孩子的维权人，并且你努力不懈地教育孩子成为一个敢于维护自己权益的人。
2. 如果一年以后，你觉得进展不顺，需要向家庭、朋友、其他家长、学校、私教、或心理医生、治疗师寻求帮助。根据孩子遇到困难的时间长短，她也许需要更多的帮助。相信你的直觉，为孩子争取，原谅自己的错误，不论你的成绩有多么小都值得庆祝！
A Mother's Advice in Helping A Child with Dyslexia
by Sarah Paige Ryan
Stage 1 – My child is struggling with reading or writing, and I'm wondering why.
If you have a bright child who's struggling in school, trust your instincts, start asking questions, and do your own research. You can't wait for a teacher or school administrator to tell you what's wrong because (at least in the USA) teachers receive very little training in literacy and dyslexia, and school administrators are not incentivized to identify learning differences. Here are some first steps:
- Visit the International Dyslexia Association website (https://dyslexiaida.org/) and take a self-assessment for your kid (https://dyslexiaida.org/screening-for-dyslexia/). While you're at it, have everyone in the family take one! Dyslexia is an inherited neurobiological learning difference. If a parent has dyslexia, the changes of a child having it are much higher. Browse through the website and download the Dyslexia Handbook, a 36-page manual with a lot of very useful info.
- Read Overcoming Dyslexia by Sally Shaywitz. It's basically the bible on dyslexia. You don't have to read it cover to cover, but there are some chapters that are really helpful for identifying signs of dyslexia, first steps, etc. It changed my whole understanding of dyslexia and really empowered our family to take action.
- Start documenting your child's education and challenges. Get a big binder and save everything in the order it comes home. Does your child understand directions? Does your child finish assignments? If your child got something wrong, does she understand why? Does she know what to do when she doesn't understand? It's really important to start assessing how much of the day-to-day work your kid understands and completes. Especially in elementary school, if she doesn't master building blocks, she'll quickly fall behind, but she may be able to hide her confusion for months or even years. This is also a good time to start having age-appropriate conversations with your child about school. How does she feel there? If your child is struggling, she probably knows it and would like to talk about it. This might be hard on you. Find someone (a spouse, friend, or therapist) that you can talk to.
- Meet with your kid's teachers, interventionists, and specials. Ask a lot of questions, and bring a friend or family member who can take notes. Document everything. If your child is in public school and is already on an Rti (Response to intervention) for reading difficulties, ask for progress monitoring every 3 weeks, and educate yourself on the assessments and the scores. For example, many schools use DIBELS to assess reading schools. You can find all of the testing info and score charts online. Don't trust your teacher to know what they mean or how to interpret them.
Stage 2 – I think my child might have dyslexia, or dysgraphia (difficulty writing), or dyscalculia (difficulty with math), or ADHD.
- If you suspect your child has dyslexia or a related learning disability, it's important to get an evaluation. There are two routes. You can seek out a private evaluation by an educational psychologist, or you can request an evaluation from your school or school district's special education team.
- Private testing – Health insurance often covers this kind of testing. Get a referral from your pediatrician and/or talk to your health insurance company. To find a respected educational psychologist in your area, talk to other parents or look for the Service Provider Referral List on the website of the local branch of the IDA. For example, at the Rocky Mountain Branch, this list is fairly comprehensive and all of the providers are vetted. Read up on the kinds of testing that can be done, and discuss the tests the psychologist will do ahead of time. For example, IQ testing used to be a core tool in evaluating for dyslexia, but now it's not used by school districts, and there are many other tests that may give you more specific information about your child's strengths and weaknesses.
- School testing – If you ask your school to test your child and they agree, awesome! But, it's more likely that they will say it's too early/there's not enough evidence/etc. Request the testing in writing (form letters here). Once they receive a written request, they have 60 days to respond. During that time, go meet with an educational advocate. You might find an advocate through the local branch of the IDA, through an online search, or by talking to other parents. And advocate can walk you through the process and a good advocate will know the school district and what to expect from specific schools/individuals. This is also a really good time to connect with a parent support group in your area if there is one (or start one if there's not!) and to start reading all the info you can find about dyslexia and reading disabilities on your state's department of education website. Understood (https://www.understood.org/en) also has a ton of useful info. Sign up for their enewsletter.
- Understand that depending on your child's age, you might not get a clear diagnosis, but you will get a lot of useful information about what's happening in your kid's brain and body, and what interventions she needs. Also know that many school districts refuse to use the word “dyslexia” even though the Department of Education has warned them that they should! If all signs point to dyslexia, insist on using it. An advocate can be helpful here.
Stage 3 – My child has dyslexia! Ahhhh! I'm freaking out!!!!
- Deep breath. It's going to be okay. We understand so much more about dyslexia than we did just 50 years ago, and there are many effective means of teaching dyslexics how to read.
- A dyslexic child needs a reading intervention program that is: incremental, cumulative, sequential, multisensory, phoneme-based, and explicit. This is often called the Orton-Gillingham method, or an OG-based method. There are many OG-based programs, including Lindamood-Bell, Barton, Wilson, and West Virginia phonics. The dyslexic child also needs daily, systematic support from an experienced and qualified professional. The first thing to do is to figure out if your child can get this support through her school or if you need to hire a tutor. Either way, don't hesitate to seek high-quality intervention and to prioritize it over other activities. You can seek a tutor through your local IDA branch or through Learning Ally (https://www.learningally.org/).
- If your child was diagnosed independently, you may want to seek a 504 or an IEP at your school. Talk to an advocate and other parents. If your child was diagnosed with a reading disability, you will begin the IEP Process. Now you definitely need to get an educational advocate to go to school meetings with you. The school is legally mandated to provide evidence-based reading intervention, but odds are they don't have the right people or systems in place and you will have to fight them on it. And start an IEP binder. And document everything.
- Read two books that will make you feel optimistic and appreciate your child's many strengths: The Dyslexia Empowerment Plan by Ben Foss and The Dyslexic Advantage by Brock and Fernette Eide.
- Start having age-appropriate conversations with your child about how she learns. My daughter understand that she learns to read differently, and that's okay. It takes more time, and she has to work harder, but she's learning resilience. She's smart. She's capable. And she's a lot like her dad. It's really important to have empowering and explaining conversations, and we avoid the word “disability.”
- Seek out a dyslexic mentor for your child. Eye to Eye (http://eyetoeyenational.org/) is a national organization that connects high school dyslexics with college-age mentors. If your child is younger, seek out an appropriate mentor by talking to other parents.
- Feeling better?
Stage 4 – We are okay.
- Here are some signs that you're doing okay: Your child has a good tutor/interventionist and is making progress on reading and writing goals. You are using Learning Ally, audiobooks, and other assistive technologies to enjoy stories together. You meet monthly with your kid's teacher(s) and have good, honest conversations about her progress and goals. Your family can have positive conversations about dyslexia and reading. You have a support network. Your kiddo has a support network. You haven't made everything about reading and school (in other words, she gets to play sports/music/whatever she loves, go to the park, hang out with friends, and BE A KID!). You understand that you are your kid's advocate, and you are committed to teaching her to be a self-advocate.
- If you're a year into this journey, and you don't feel like you're on the right path, get help from family, friends, other parents, school, tutors, or psychologists/therapists. Depending on how long your child has struggled, he or she may need different levels of intervention. Trust your gut, fight for your kid, forgive yourself for making mistakes, and celebrate your successes no matter how small!
Sarah的网络照片：她是一个作家，酷爱读书。孩子遇到的挑战，刚开始令她极为困惑。母爱使她竭尽全力寻求帮助。经过两年多的努力，孩子的阅读水平已经和同龄人没有差异。她现在在致力于说服州政府的立法委员会，把阅读障碍纳入小学的筛查程序中（如同对听力和视力的筛查），使更多的孩子及早得到帮助。