By Christine Chien
When our daughter was in the first grade, she struggled with learning how to read. “Mama, I know God doesn’t make any mistakes…but why did he make me this way? Why can’t I read?” Her words pushed us forward with the momentum of a “mama-bear” ferocity sprinkled with an attitude of grace.
Education Is Power: “A Worried Mother Does Better Research Than an FBI Agent!”
- Understand and investigate what dyslexia is and how it affects your child. Do your research!
- Use reliable and reputable resources for information: IDA, University of Michigan DyslexiaHelp, Reading Rockets, Decoding Dyslexia, Wrightslaw, Parent Training and Information Centers (PTI’s) in your state, etc.
- Read books and evidence-based articles and watch videos by the leading national dyslexia experts.
- Become familiar with state and federal IDEA laws protecting your child. Check out Wrightslaw.com, https://sites.ed.gov/idea, and your State Education Agency for more information about Child Find laws.
- Educate the educators with grace.
As we armed ourselves with education about dyslexia and the law, many times we were the most experienced people in the room during IEP or 504 meetings. Remember to stay gracious with educators and administrators, share reputable resources, and look for ways you can engage and problem-solve with your campus and district without becoming contentious.
Child Centered: Meeting Our Neurodiverse Children Where They Are
- Get to know your child’s strengths and barriers to learning. Ask your child questions about what he or she enjoys, including what your child finds challenging about school. Investigate if there are other barriers with attention, memory, auditory processing, math, etc.
- A good evaluation should help drive what your child needs. You can request an evaluation from the school or consider a private evaluation. Whatever route parents take, the data should help us make decisions about what our child needs.
- Early intervention: Don’t wait on the school to make sure your child gets what he or she needs. Our school was slow to come on board with providing needed interventions for our daughter. We took a hybrid approach of continuing to advocate for specialized instruction at school, while seeking outside support for her learning needs.
- Help your child access his or her passions and strengths. Giving our children the opportunity to work toward excelling in their areas of interests/strengths will give them the confidence to approach their barriers. Our daughter loves competitive swimming, creative writing, and creating artistic projects. She trains hard and is passionate about all her interests. When our children experience the fruits of their hard work toward their goals and passions, it gives them the motivation and energy to approach their barriers with determination and grit.
- Bring your child into the conversation and keep it positive. We were open and honest with our daughter about her dyslexia and auditory processing. We went through almost a grieving process together helping her work through questions like, “Why was I made this way” and helping her accept the wonderfully unique neurodiverse brain she was born with. Until we had a conversation about how her brain was wired, she came up with her own conclusions and thought she was stupid. Documentary films like I Can’t Do This, But I Can Do That and books like Thank You, Mr. Falker helped her realize she was not alone.
- Give your child input into his or her education. We made mistakes in this area early on when making her attend specialized tutoring sessions without communicating with her first. It did not go well. Including our daughter in the process helps her feel like a valued team member and invested partner in her learning as we work together to identify her areas of instructional need and how she can utilize her strengths to help stay motivated.
Build a Network: We Really Are Stronger Together
- Connect with other parents. In the beginning, we found support and resources through our district PTA SAGE (Special and Gifted Education) group. They introduced us to our state Parent Training and Information Center (PTI). Find your local/regional PTI contacts.The ones in our area ROCK! They helped us to connect with other local parents and provided free training opportunities to become knowledgeable parent leaders, while equipping us to start our own support groups.
- Connect with the experts. The International Dyslexia Association plays host to the leading experts in dyslexia across the country and world. Don’t be afraid to reach out to experts through e-mail. We have been blessed by the wisdom and relationships built with the national community of experts in the world of dyslexia.
- Reach out to your State Education Agency. Don’t be afraid to ask questions! What started with mostly questions asking for “clarification” about guidelines in our state, grew into relationship building. Professionals working at our State Education Agencies are there to help both educators and parents. We have encountered passionate educators who care about helping parents access Free Appropriate Public Education (FAPE) for their children.
- Find your tribe. As we attended PTI sponsored trainings, connected with our PTA SAGE group, and attended our local IDA chapter meetings, we started to connect with other like-minded parents, professionals, and educators. Eventually, I found a tribe through Decoding Dyslexia, a network of like-minded intelligent, professional parent leaders across the country helping other parents engage with their schools and state through collaboration, relationship building, and process improvement with our schools and respective state Departments of Education. They encouraged me to serve as one of the parent leaders in our state, and I remain forever grateful for the friendships made across the country and world as we educate, advocate, and legislate for children with dyslexia.
- Help your child create a supportive network of teachers and peers. We were blessed to have an experienced second grade teacher who recognized our daughter’s reading and spelling struggles. Although the campus was slow to recognize her dyslexia, this teacher spent the entire year working with our daughter to help her learn how to read.Through groups like Decoding Dyslexia, StandUpLD (Texas), and our PTI, we were connected to other families in our area with similar-aged children and learning issues as our daughter. She began building her own tribe.
Communicate and Collaborate With Grace
- Deal with your emotions. Before we could be effective at gracefully advocating for our daughter, we had to take a step back and deal with our own emotions of unforgiveness, bitterness, anger, and grief toward our school district—not easy, but necessary if parents want to be effective in their advocacy.
- Be authentic and transparent.
- Sprinkle e-mail communications with sincere words of collaboration and grace.
- Seek collaboration and process improvement, not retaliation. It can be tempting to use social media as a sounding board for our frustrations we have with the school.
- Be respectful. Building a respectful relationship with your school and district goes a long way. While we may not always agree with the decisions our schools and campuses make, keeping a respectful attitude while we advocate will help toward making a positive impact for change and model appropriate conflict resolution for our children.
Collaboration With Accountability and Grace
- Hold schools and districts accountable to state and federal laws with kindness. Parents may need to file state complaints, Office for Civil Rights (OCR) complaints, and/or federal special education complaints against their school or district to help improve the process.
- Stay focused on how the complaint process will benefit the school district and ultimately your child.
- Seek collaboration and process improvement through the complaint process, and not retaliation. Most educators are there to help children despite poor pay and recognition. Working together as a team while holding your school accountable will benefit your child along with improving the overall processes for others.
Now five years into our “graceful advocacy” journey, our family has a new appreciation for growing through the struggle. Our daughter will be going into seventh grade next year and is doing wonderfully. She has become a confident, motivated self-learner who effectively understands and communicates her strengths along with her barriers. She is fully aware of what tools are necessary for her to be successful in school and life while advocating for what she needs. Remaining consistent in collaboration efforts with our school, district, and State Education Agency, along with help from our various tribes of supportive friends, fellow advocating parents, and professionals, we are continuing the journey of advocating with grace.
Christine Chien is the mom of twice exceptional children, a Decoding Dyslexia Texas Parent Leader, and StandUpLD Board Member. She has a BS in Curriculum and Instruction from Texas A&M University. Chien encourages parents toward interacting with “graceful advocacy.”
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