All children with special needs who succeed in school have at least one thing in common: parents who are passionate and effective advocates. As parents, we have the ability to advocate for our children by asking questions and speaking up for them. At times, this can be uncomfortable or even difficult to do; however, no one is more committed to making sure your child has access to the services and supports they are guaranteed than you are.
There is no magic formula for effective and productive advocacy. Rather, it takes hard work, persistence, and practice. These skills and strategies can help you strengthen your advocacy efforts.
1. Understand your child’s autism and the supports required.
When you are at the individual education program (IEP) table, you are the expert on your child. Being informed, knowledgeable, and having a sound understanding of autism, and more specifically your child’s needs for accommodations and services, will give you a strong, confident voice when advocating. It will also help you communicate key information to professionals and ask educated and informed questions. In addition, it will assist you when developing the IEP, including proposed goals, your parent input statement, and recommendations for supports/services.
Along with fully describing how autism affects your child, remember to emphasize your child’s personality and interests. By highlighting their capabilities, personality, talents, and strengths in addition to their challenges and needs, you will provide the opportunity for professionals to truly get to know your child, as well as assist them in identifying the most effective modifications, accommodations, and learning strategies.
2. Educate yourself and others.
Special education law can be overwhelming and intimidating; however, it is vital to know and understand state and federal law. A great place to start is understanding your procedural safeguards. These safeguards are designed to protect your child’s rights and yours as a parent. A copy of your procedural safeguards should be provided to you at a minimum annually (typically at the IEP meeting). Next, dive into the law. Federal regulations outline that your child has the right to a free and appropriate public education in the least restrictive environment, with access to “specially designed instruction,” all at no cost to you. You should also look at state law, which will reiterate federal law and provide regulations that will describe how your state’s special education system.
Finally, become familiar with the special education process to include: eligibility, evaluation/assessment, the IEP process, etc. Keep in mind that special education addresses more than just academics. Related services (speech, occupational therapy, etc.), social emotional challenges, behavior, activities of daily living, etc. are appropriate areas to address during the IEP meeting. Remember that the purpose of special education is to prepare your child for further education, employment, and independent living. Knowing your rights and the process will enable you to advocate for your child effectively and with confidence.
When reviewing the procedural safeguards and law, you will notice many abbreviations, acronyms, and specialized terms. OAR’s Life Journey Through Autism: Navigating the Special Education System provides a glossary of terms for your reference. Knowing what these terms mean and understanding how they pertain to your child will help you be a more effective advocate.
In addition to Navigating the Special Education System, OAR offers other guidebooks and resources to help you become a well-informed advocate and educate your child’s peers and community about autism awareness and acceptance.
3. Create a collaborative team.
Establishing a good, working relationship with your child’s team will help yield positive outcomes at the IEP table and beyond. The best way to establish that relationship is by creating a collaborative team. To do this, find out who the key players are and what their role on the team is. Take special note of each member’s responsibilities and who has what authority. Next, foster connections and build relationships with your child’s team. Do this by really getting to know the individuals — find out their interests, likes/dislikes, etc. When we take the time to create connections based on shared interests, those connections can help us resolve conflict effectively.
4. Find your tribe.
Surround yourself with professionals and other parents who have experience navigating the special education process. Not only can these people be your sounding board, but they can also provide support, knowledge, and resources. In addition, they understand where you are coming from and will be ready to laugh, cry, and celebrate with you.
5. Be proactive.
You do not have to wait for an IEP meeting or for something to go wrong to begin advocating for your child. If you have questions or concerns, no matter how minimal they may seem, bringing them up early and in writing is always best practice. This will allow the team to address concerns as they arise and potentially prevent a more significant issue or snowball effect from occurring.
6. Be objective and solution-oriented.
Being objective about your child can be challenging, especially in potentially stressful and overwhelming situations. It is natural for emotions to drive the conversation and set the tone at a meeting. However, to be an effective advocate, you must learn to balance emotion with objective reasoning when communicating with your child’s team. To do this, be prepared to:
- Focus on facts rather than feelings.
- Come to meetings with a list of specific outcomes you desire, in addition to documentation and data (progress reports, student work samples, research, etc.) to support those outcomes.
- Articulate why your child requires what you are requesting (include options that have been tried and did not yield results).
- Turn “no” into “yes.” Have planned solutions/responses to potential reasons someone may say “no,” including because the policy says “x.
In addition to being prepared, be clear, calm and direct when speaking and practice the art of negotiation and active listening. While assertiveness and persistence are important, being overly emotional and leading with anger or aggression can work against you and has the potential to damage relationships you’ve built.
7. Communicate effectively and frequently.
When communicating with your child’s team, always put everything in writing. Not all communication about special education services will occur via email or prior written notice. Therefore, if a meaningful conversation happens at school pick up or during a phone call, follow up with an email summarizing the discussion and ask the recipient if your description is accurate or if they have anything to add.
In addition to formal types of communication, it is equally important to provide frequent, informal updates. My friend, Ashley Barlow, host of the Special Education Advocacy podcast, utilizes a simple yet effective communication strategy for her son’s team; she sends a weekly Sunday email. The email can be short and include photos/videos, a quick explanation of an accomplishment, a therapy/medical update, a funny story from the week, or something your child is having difficulty with. This email provides a personal connection with your child’s team, allows the teacher to include specific experiences in your child’s day, and assists the team in identifying/addressing any concerns as they happen. In addition, these emails help build relationships, making it easier to ask tough questions
8. Keep records and be organized.
From IEPs and evaluation reports to work samples, behavior logs, and teacher emails, every piece of documentation helps tell your child’s story. To help you get and stay organized, create an IEP binder. Many resources can assist you in setting up this record-keeping system, including OAR’s Operation Autism website and a checklist from the non-profit Understood. If you prefer a digital file system, my friend and advocate Meg Flanagan has created a guide to help you set up that system. Whether you choose a traditional record-keeping strategy or a digital one, doing so will keep you from misplacing important documents and allow you to reference items easily. Being organized will minimize the frustration you have when preparing for meetings.
9. Get involved.
Does getting involved mean you need to volunteer during the day to read with students, be at every class party, or be the PTO president? No. Design a plan that works for your schedule and interests. Volunteering in the school will help deepen the connections and relationships you have already developed. In addition, it provides you with a chance to learn more about the team and school culture/environment and allows the team to learn more about you and your family. This simple strategy can have a significant impact.
10. Trust your gut and know your limitations.
If you have questions or concerns, speak up. If something is not sitting well with you, tell someone, reach out to an expert, etc. And when you are feeling overwhelmed, know your limitations and ask for help. Advocating is rewarding and, at times, challenging, but you do not have to do it alone. You’ve created a collaborative team and an amazing support group; use them!
11. Teach your child to self-advocate.
Every time you stand up for your child’s rights and speak out for their needs, you are modeling advocacy. By watching you effectively express your desired outcomes, your child will have the opportunity to learn vital skills that will lead them to become a successful self-advocate. You may be thinking that there is plenty of time to teach these skills, but as my friend Michelle Norman reminded me, “It is never too early to empower your child with knowledge about their disabilities,” something she has done with her daughter from a very early age. When teaching Marissa about her unique needs, Michelle and her husband used correct terminology and reassured her that her disability did not define who she was. Michelle worked alongside Marissa to educate her peers and teachers not only about her disability and how it impacts her, but also positive facts about her as well. Utilizing this strategy with your own child will benefit the entire school community. If you are ready to implement this strategy, OAR has a variety of resources to help, including their Kit for Kids and the guidebook, An Educators Guide to Autism. While self-advocacy will look different for each child, these skills are something that will carry them beyond the classroom. Teaching your child to self-advocate will allow them to:
- Build confidence.
- Speak up for themselves and others.
- Communicate their strengths, needs, and desires.
- Learn about their rights.
- Take responsibility for themselves.
- Learn about their disability while being reminded it doesn’t define who they are.
- Have a voice at the table.
The law guarantees specific rights and protections when it comes to special education supports and services. In my opinion, the most important right parents have is the right to participate in their child’s education. By advocating, you can direct the narrative for your child and share your expertise with the team. Parents are their children’s best advocates; I hope that by marrying your parental instincts with these tips/strategies, you will become a more empowered, confident, and effective advocate at the IEP table and beyond.
Carla Wyrsch is a mother, special educator, graduate of William and Mary Law School’s Education and Advocacy Clinic, and a Master IEP Coach®. She has devoted her career to educating and advocating for children with disABILITIES. Her experience spans a variety of settings, including residential treatment facilities, military bases, public schools, and the Cleveland Clinic Children’s Lerner School for Autism. In addition to her work with children, she enjoys providing coaching sessions to both professionals and parents as well as volunteering for Partners in PROMISE, a nonprofit that advocates for military children in special education.