What is Self-Advocacy?
Self-advocacy includes the ability to know one's strengths and weaknesses, to promote one's skills, take control of one's environment, and request assistance when needed. Wehmeyer (1996) definces self-advocacy as "acting as the primary causal agent in one's life and making choices and decisions regarding one's quality of life free from undo external influence or interference."
Studies have shown that students who use self-advocacy skills are more likely to earn higher incomes one year after graduation (Wehmeyer, 2004). It can seem like a full time job advocating for your child with dyslexia. One of the best things you can do is teach him how to self-advocate. It will give him greater confidence, self-awareness, and success. Most importantly, it will convey (more powerfully than words) that you believe in him. Sit down with your child and ask him one or more of the following questions.
- How do you think your dyslexia affects you in all the areas of your life?
- How do you think you learn the best?
- Are there any strategies that seem to help you?
- What do you know about your IEP/504?
- Are you familiar with your goals and accommodations?
- Do you know where to go for learning support?
- Do you know your legal rights?
Depending on your child’s responses, you can facilitate more in-depth conversations about each of these topics. Make this a special time for you and your child. Provide a framework for why you want to talk about these topics (e.g., "I can see that you are maturing (provide a specific example), and I think it’s time for you to become more independent in school decisions that relate to you.") Take him or her out for some special time with you. Make discussions brief (15 to 20 minutes is plenty).
This article will give you practical suggestions for helping your child take the next step on the road to self-advocacy.
Your child needs to be able to describe dyslexia in his own words. You might explain to your child that, while many people have heard of dyslexia, they think that it’s just reversing letters. Be prepared to share your definition of dyslexia and then help your child to craft one in his own words.
When talking to your child you might say, "You need to know about dyslexia and be able to explain it to someone else. When you are self advocating, you might say, 'I have dyslexia, a language-based learning disability, that affects 5-10% of the population. My brain is wired differently, which means that I have trouble with the processing the sound components of language.'"
You and your child might also review Debunking the Myths About Dyslexia and decide to share this information with others.
Explain to your child, "So, from what we’ve watched/read, dyslexia may affect you in a lot of different areas. What do you think you have trouble with?" It may help to give him some choices:
- Sounding out words accurately and quickly
- Reading smoothly
- Reading comprehension
You might add, "Some people with dyslexia also struggle with organization, note taking, test taking, and working memory (holding several things in your mind for a brief time). Do you think that any of those areas are hard for you?"
Remember, this is a process of self-discovery. It is generally counter-productive to tell your child something he is not ready to hear. Through your leading questions and the resources you provide, your child will learn more about himself. This is a journey that will take some time (So feel free to revisit the same questions and dialogue every year or two).
Practical Tip: You might encourage your child to take an additional step by forming a brief definition and personal narrative to share with teachers. Then role-play (you take the role of the teacher) so that your child gains confidence and fluency in using the script (much like an actor who has rehearsed his lines).
You could suggest, "I think it would be helpful to have a brief script to tell teachers, future employers, or friends about your dyslexia. Here’s an example, maybe we can change it so that it is in your own words:
'I have dyslexia, a language-based learning disability which affects 5-10% of the population. My brain is wired differently, which means that I am really good at (list things that you are good at), but have a harder time with (list weaknesses from the list above).'"
Offer, "You can practice saying it to me and I’ll pretend to be the teacher. You’re kind of like an actor, because you’ll have to practice to make this seem natural."
You’ve known your child for his whole life and can probably identify how he learns best. For example, can you verbally tell him a message (auditory learner) or do you need to write it down (visual learner)? Maybe your child needs to learn how to do something alongside you (kinesthetic learner). With this conversation, you will deepen your child’s awareness of himself and lay foundation for self-advocacy in every area of his life:
PART ONE: You might start by saying, "In order to be successful, you need to be knowledgeable about your strengths, talents, gifts, interests and learning differences. Have you ever taken the time to consider the things that you are good at? Have you considered the way that you learn best? Knowing your strengths and your learning style can help you to self-advocate (speak up for yourself) and do your best in school, at work, and at home."
You might continue, "Some people prefer to learn by hearing information (auditory learners), seeing information (visual learners) or by doing things (kinesthetic learners). You may find that you gravitate towards a couple of these styles. To find out which kind of learning style you prefer, it might be fun to take a little survey together. (I’ll do my learning profile and then you do yours)."
You might conclude, "So I’m a ______ learner, and you’re a ________ learner. Does that seem right to you?"
PART TWO: You might query, "Now that you know your learning style, imagine that you could learn that way in your job or class. What tools would help you? Those are called ‘strategies’. How could the teacher change the format of class/work for you? That’s called an ‘accommodation.’ Let’s look at a couple of lists of strategies and accommodations, and you mark the ones that sound like they might be helpful for you."
- Preferential seating (e.g., sitting where you can see the board and teacher’s face)
- Advance notice of assignments
- Alternative ways of completing assignments (e.g., oral presentation versus written paper)
- Assistive computer technology
- Note takers, lab or library assistants, readers, interpreters
- Captions for film and video material/Course or program modifications
- Document conversion (e.g., audio supports for written documents)
- Test modifications (someone to read the questions to you)
- Study skills and strategies training
- Time extensions
- Taped lectures
- Highlighted textbooks
- Extra set of textbooks for home use
- Computer aided instruction
- Rearranging class schedules
- Individual contracts
- Modifications to the environment (e.g., study carrel, student's home, separate room, etc.)
- Videotaping the lecture or watching supplementary videos
- Free academic tutoring (available for core academic areas at many colleges and universities)
- Review previous learning (to connect with the new information)
- Preview what you will learn about
- Look at an example of what you will do
- Break down long directions into smaller parts
- Highlight the main idea and important vocabulary in your textbook
- Use manipulatives to move around for problem solving
- Select projects based on interests
- Participate in a study group (especially if you are an auditory learner)
- Opt to complete a project rather than take a test
- Take advantage of your professor’s office hours
- Attend multiple sections of the same class for repetition
- Utilize the writing lab for editing and revising your papers
You might need to reassure your child, "Remember, you’re not asking for special treatment. School assignments and tests completed with accommodations should be graded the same way as those completed without accommodations. After all, accommodations are meant to ‘level the playing field,’ and provide equal and ready access to the task at hand, and not meant to give you an unfair advantage."
Practical Tip: Suggest, "Let’s summarize your learning style, interests, and strengths in a sentence or two." Share your learning profile with your child. (E.g., "I am an auditory learner and I process new information by talking it through with someone else. I have a creative flair and love anything related to art and drama.")
If your child is in grades K-12, and has a significant amount of difficulty with learning, it is usually preferable to have an IEP, because IDEA is the federal law (with some funding behind it) that mandates that schools comply with specific standards and processes in implementing an educational plan. An IEP is a legal document containing goals, accommodations, as well as additional learning intervention such as: tutoring, academic support, reading therapy, etc. It is the school’s responsibility to implement the IEP and review it annually. The IEP will track your child’s progress on the stated goals.
A 504 plan lists the modifications and accommodations you will need to have the opportunity to perform at the same level as your peers. The "504" in "504 plan" refers to Section 504 of the Rehabilitation Act and the Americans with Disabilities Act, which specifies that no one with a disability can be excluded from participating in federally funded programs or activities, including elementary, secondary or postsecondary schooling. If you have a 504, your child will have to take the initiative to share it with his teachers at the beginning of the semester and request the specific accommodations listed in the 504.
Practical Tip: If you already have an IEP/504, try using the following script (or modifying it) to talk to your child about his IEP or 504 Plan. "Let’s talk about your IEP/504 Plan. It’s important that you know what is in it, because it’s about you. You might need to explain it to one of your teachers when you need extra time for a test. You won’t be able to do that unless you take time to know what is in your IEP/504."
"Do you remember how we talked about your learning style, strengths, and weaknesses a few weeks ago? We made a list of learning strategies and accommodations that would help you to learn in a way that makes sense for you. Let’s see if that matches up with your IEP/504 Plan. Let’s look at it and see if we can find the answers to some of these questions:
- When was it last updated?
- What learning weaknesses and strengths were reported?
- What accommodations are listed?
- If it is an IEP: what were your goals? What type of intervention was specified?
- Do you agree with the goals/accommodations listed? Are there any others that should be added?"
"Do you remember how we talked about your learning style, strengths, and weaknesses a few weeks ago? We made a list of learning strategies and accommodations that would help you to learn in a way that makes sense for you. That list doesn’t do any good unless we talk with your school about them. The staff will want to make a plan with us to help you learn in the way that is best for you. This is called an Individualized Education Plan or IEP. That helps all of us to have a common set of goals and accommodations that would help you to do your best in school. Have you heard of an IEP? What questions do you have about it?" Talk to your child about his concerns and questions using the FAQs below.
Why do I need an IEP/504?
That’s a great question! Your brain is wired differently and so you will have some talents that other kids don’t have, and you will have some difficulties that other kids do not have. The law states that every child has the right to a Free and Appropriate Education (FAPE) for all students. The IEP gives the school a legal responsibility to teach you in a way that does not penalize you for your dyslexia. It contains progress that you’ve made, goals for the upcoming year, and accommodations that will help you achieve those goals. A 504 only gives you accommodations without tracking your progress and providing intervention.
What is the difference between an IEP and 504?
An IEP gives you the chance to strengthen areas that are pretty weak as well as accommodations to the classroom/environment. This intervention will be built into your regular school day. A 504 just gives you access to accommodations based on your dyslexia.
I don’t want to look different from my friends!
None of your friends need to know about your IEP or 504 Plan unless you choose to share that with them. If you have to leave the room to take a test or work on a certain class, you can just tell them that you are taking a "college prep" class. The IEP goals and accommodations will only be known to you, me, and your teachers.
Do I have to go to the meetings?
It’s usually a good idea to come for at least part of the meeting. You know yourself the best and can share your perspective with your team. Also, it will increase your awareness about your IEP/504 Plan so that you can take an active role in your learning.
Do I have to take a bunch of tests?
Typically, some testing is completed prior to obtaining an IEP or a 504 Plan. The testing will help the school to know how you learn best and what your strengths and weaknesses are. The testing usually lasts between 2 and 4 hours. It’s kind of like taking the state achievement tests only it will probably be administered in a one-on-one setting.
Who do I talk to about getting an IEP or 504 Plan?
If you are in middle school or high school, you should ask your guidance counselor. You will first complete testing to determine the best plan for you. If you are in college, you can contact the specialists on your campus at either Learning Support Services or Academic Support Services.
Plan to connect with your child during the spring and strike up a conversation about the upcoming school year. You might try the following script. "How did you feel about your learning and your grades this last year? Were there any classes that you struggled with more than others? What would help you next year with a more challenging workload? While it’s on our minds, why don’t we make a list of what we should do next fall to set you up for success:
- Let’s set up an initial meeting with a guidance counselor or learning/academic support specialist
- You might need to do some testing
- We will need a follow-up meeting to discuss what services/accommodations can be provided
- We should schedule a meeting with the professor(s)/teacher(s) to let them know about your needs for the class
"I really would like to hear your goals for yourself for this upcoming year. When you participate in goal setting, you have a vested interest in achieving those goals. Part of self-advocating is participating in IEP meetings (in high school) and initiating meetings with employers, college professors, or anyone else that would need to know about your dyslexia. Telling them ahead of time about how you learn and what accommodations and strategies you will need to use can set you up for success. It also demonstrates a great deal of confidence and responsibility. In your meetings discuss your goals (specifically for that semester or job, and how that will help you for the future). It will be helpful to plan this out ahead of time (and to have some notes in front of you) when you do this."
Let’s go to Academic Support Services and pick up the brochures about the services they offer, or we could find this information on your college’s webpage. I’d like you to keep your important documents organized in a binder. Let’s be sure to include:
- Any reports or standardized testing that you’ve had before
- Your most recent 504 or IEP (if applicable)
- A list of accommodations you would find helpful
- The business card of the guidance counselor/learning support specialist that you talked to
- Brochures about the services provided at your school
- A script with your learning strengths and weaknesses
- Goals that you have for yourself (both for the semester and long-term goals)
- Who do you want to be at the meetings with your school staff? It’s usually a good idea to bring a parent, friend, or mentor to the meeting to help you stay calm. It is also helpful to have another person listen, ask questions, and take notes (or to debrief with after the meeting).
Your child is going to learn more about this by doing a little legwork rather than hearing you talk about this topic. Consider making the following proposal during the summer months. Give your child a small research project to do that will be compensated with some extra allowance money or a special reward (such as going out to a movie, going out to a favorite restaurant, or a new book or game, etc.). Have your child respond to the following scenarios:
Renee has poor vision. She is in a regular classroom, but just can’t seem to keep up with note taking. She also has a hard time typing papers and taking tests. What are her legal rights and what laws protect her?
Thomas is the best art student in the school, and he has dyslexia. His teachers tell him that if he just put in the same amount of effort on his assignments that he does on his art projects, he would be getting straight A’s. Thomas has spent hours on his homework, but he usually can’t finish all of the assigned readings for the next day, and he always "chokes" on the tests when he has to recall and spell certain terms for science and history. What services might he receive under IDEA?
Randolph had an IEP all throughout high school because of his learning disability. He is starting his freshman year of college. What laws apply to him? What can he ask for in college?
Here’s some of the basic information for you to have on hand:
The Individuals with Disabilities Education Act or IDEA is the federal law that sets standards for the education of individuals with disabilities. The Individual Education Plan or IEP falls under the IDEA regulations. While IDEA provides the overarching laws and regulations regarding special education, the states are allowed to "interpret" these laws as long as the basic standards of IDEA are met. See the most current revision of federal mandates here.
- The IEP will meet the unique learning needs of the student with the disability.
- Parents and students will be informed of their legal rights (including certain steps, procedures, and timelines that are followed from start to finish). For example, a written notice will be provided before there is any change in placement.
- A family has a right to an independent educational evaluation at public expense, if there is disagreement with what the schools have determined the student’s disability to be.
Section 504 refers to the Vocational Rehabilitation Act (ADA) of 1973 and is a civil rights law. It protects the rights of people with disabilities against any sort of discrimination in a program that receives federal funding. Section 504 requires a school to make reasonable accommodations for students with special needs.
Basic rights covered by Americans with Disabilities Act Amendments Act (ADAAA)
- Expands the definition of disability under the orignial Americans with Disabilities Act, preventing discrimination in employment and in public and private settings
- Protects children and adults with disabilities
- Applies to all public and most private schools and colleges, testing agencies, licensing authorities, and state and local governments
- No person with a disability shall be excluded from the participation in, or subjected to discrimination under, any program or activity receiving financial assistance from the federal government.
- If you feel that you have been discriminated against due to your difficulties with learning, reading, writing, or working, you are entitled to protection under the American with Disabilities Act (ADA).
- You are entitled to an evaluation by multiple sources.
Practical Tip: Debrief with your child after he presents the information that would help Renee, Thomas, and Randolph. Ask him how these laws apply to him. Dialog about how knowing your rights can help you to be assertive and take charge of your learning.
If your child is getting ready for college, it is a prime time to talk about self-advocacy with him. Discuss how you want him to take the lead in getting the learning supports that he needs. You could use the following script: "You need to disclose your disability to the college, request specific accommodations, and supply supporting professional documentation. In public school, the school system has a duty to identify students with disabilities. This is not so in college. In college, the student has the responsibility to disclose the disability and to request accommodations. You will have to be specific about the accommodations that you need because of your disability. It is not enough to say that you have learning disabilities.
"Once you have provided the necessary paperwork and completed any testing that needs to be done, the college is responsible for providing reasonable accommodations or modifications that do not result in unfair advantage, require significant alteration to the program or activity, result in the lowering of academic or technical standards, or cause the college to incur undue financial hardship. When accommodations are necessary they must be provided in a timely fashion (Smith v. State University of New York, 1997)."
Discuss the following examples with your child:
"Sarah is taking courses at the community college. She has a reading disorder, expressive writing disorder, and ADHD. She requested one and one-half time on tests, separate room for tests, a reader to read exam questions to her, and a scribe to take down her answers. She provided good professional documentation to support her request and was granted the requested accommodations.
There are student requests that the college is not obligated to grant. For example, Hannah did not request an accommodation on a test and failed it. Then she wanted the college to eliminate the failed course from her record."
Practical Tip: Have your student set an appointment with Learning/Academic Support Services as soon as he has been accepted to the school. Inquire what paperwork will be needed to receive accommodations.
While school is an essential area for your child to use self-advocacy, there are plenty of other areas where it is needed. Set aside some time to talk about his role in advocating at the doctor’s office, at work, or when signing a lease. You may consider using the following script and resources:
"You need to be able to explain to others what supports you need to be successful on the job, in college or training environments, and when you’re living independently. You may not have realized that you can obtain assistance in all of these areas of your life through Vocational Rehabilitation Services (VRS)."
"You can bring testing and reports that document your dyslexia to them, or have them complete an evaluation. VRS is a program of the Bureau of Rehabilitation Services (BRS), which provides quality individualized services to enhance and support people with disabilities in preparing for, obtaining, or retaining employment. Through active participation in their rehabilitation, people with disabilities achieve a greater level of independence in their work place and living environments. Let’s find the VRS closest to us." To find a location near you, see the VRS Statewide Location Map.
"Here are some of the services that they offer:"
- Vocational Rehabilitation Services (VRS) provides comprehensive, coordinated, effective, efficient and accountable services needed by eligible individuals with disabilities to prepare for, enter, engage in and retain employment consistent with each individual's strengths, resources, priorities, concerns, abilities, capabilities and informed choice.
- Supported Employment (SE) - individuals with the most severe disabilities are placed in competitive jobs with qualified job coaches/trainers to provide individualized, ongoing support services needed for each individual to retain employment. The employer is contacted monthly and the employee is visited twice monthly, either at or away from the workplace, to address any issues that may threaten the individual's ability to remain on the job.
- Independent Living (IL) Services - promotes a philosophy of independent living including consumer control, peer support, self help, self determination, equal access and individual and system advocacy, to maximize the integration and full inclusion of individuals with disabilities in community leadership, empowerment, independence and productivity.
"It can be a process to get the accommodations in place, but it will help you to learn in the way that works best for you. Now you have the tools and resources you need to be your own advocate which will help you to take charge of your life. You’ve come a long way, and if you continue to self-advocate, I know that you will be able to achieve your dreams!"