Advocacy: The Gift that Keeps Giving

December 13, 2021December 13, 2021 Organization for Autism Research

During this time of year, it’s easy for us to get caught up in making multiple trips to retail stores and spending hours online shopping, stressing over finding the perfect gifts for everyone on our list. There is a popular quote from Dr. Seuss’ How the Grinch Stole Christmas: “It came without ribbons! It came without tags! It came without packages, boxes or bags!” As we approach the hustle and bustle of the holiday season, what if I told you there is a gift that will be appreciated long after that last stocking is packed away and the last sip of eggnog is taken for the season – a gift that will continue giving all year long, and you won’t find it online or in any store. The gift is advocacy; you advocating for your child.

When you advocate for your child, the reach extends beyond your home. Other parents become intrigued and inspired. Teachers and school professionals become engaged and motivated. Your community becomes aware and educated. And most importantly, your child wins. Initially, your advocacy journey likely began by standing up and speaking out for your child; however, you will quickly find that it will become a gift for the entire community. Your community will come together and learn from one another, educate others, and mutually advocate for every child.

If you want to give the gift of advocacy this holiday season and beyond, here are six strategies to strengthen your advocacy skills:

Create a collaborative team. We do this by fostering connections and building relationships with our child’s team. Get to know the individuals on the team personally – their interests, likes/dislikes, etc. When we take the time to create connections based on shared interests, we can embrace conflict – helping us to both approach and resolve it effectively, resulting in more positive outcomes. Additionally, I like to let my child’s team know they are appreciated and valued by sending a note or email or by bringing in their favorite cup of coffee, a small gift, or treat. I know there are some that disagree with this practice; however, in my opinion, showing gratitude is a great way to build and maintain relationships.
Communicate! Communicate! Communicate! Whether you utilize a school communication log, a class app, or a phone call, communicating with your child’s team is vital. I was talking with my friend Ashley Barlow, special needs mom and host of the Special Education Advocacy podcast, and something she recommends to her clients and a strategy she utilizes for her son Jack’s team is sending a “Sunday” (or weekly) email celebrating accomplishments, updating medical or therapy information, noting struggles, and sometimes sharing funny stories or pictures. This email provides a personal connection, allows the teacher to include specific experiences in your child’s day, and will allow the team to identify and address any concerns as they arise. Your child’s team is made up of many professionals: special and general education teachers, occupational therapist, speech therapist, school principal, special education director, etc. For the team to remain on the same page in between meetings, open and frequent communication is a must!
Know the law and understand those procedural safeguards. Early in my teaching career, I regret not reviewing the procedural safeguards with parents prior to their children’s Individualized Education Plan (IEP) meetings. Did I make sure they received their annual copy and asked if they had questions? Of course, I did. However, do I think they actually read through them? If I am answering honestly, no. A new practice I have adopted is in addition to providing their annual copy of the procedural safeguards, I include a one-page summary as a reference and cheat sheet for the family. I know you are busy, and that packet is really thick and probably contains some confusing vocabulary, but knowing and understanding the procedural safeguards will provide you with the ground rules on how to navigate the law and work with your child’s school.
Stay organized. A great strategy for organization is creating an IEP Binder. An IEP binder will allow you to have your communication logs, IEPs, Behavior Plans, progress notes, work samples, medical information, evaluations, etc., all in one place. This will allow you to reference and refer to these items quickly and easily.
Get involved. I was listening to the Special Education Advocacy podcast while folding laundry one afternoon and I literally stopped what I was doing when Ashley said that this is her number one advocacy strategy. 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/interests as well as the teacher’s schedule/need. Volunteering in the school will help deepen the connections and relationships that you have already been developing by providing you with a chance to learn more about the team and school environment as well as allowing the team to get to learn more about you and your family. This strategy is so simple, yet it will have a significant impact.
Trust your gut and know your limitations. Last but not least, trust your gut when it comes to your child. 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; utilize them!

Under the Individuals with Disability Act (IDEA), you are guaranteed certain rights and protections when it comes to your child’s education. In my opinion, the most important procedural safeguard you have as a parent is the right to participate in your child’s education. I always like to remind parents when we are preparing for their child’s IEP meeting that they are the expert on their child. By advocating, you have the opportunity to direct the narrative for your child and share your expertise with the team. Be confident and know, the thing that you were doing to help your child will become a gift that has positive outcomes for everyone in your community all year long!

Happy holidays and cheers to a new year full of advocacy!

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