Advocacy Tips for the Long Haul

by Cynthia Carr Falardeau Print This Article

Split image shows children on a racetrack and children on a forest path with text "IT'S NOT A RACE IT'S A JOURNEY!

Advocacy Tips for the Long Haul

Recently I talked to my son’s first elementary school Principal. She marveled at the progress he had made from his first days in the Pre-K ESE (Exceptional Student Education) program. He was three, non-verbal, crippled by sensory input, and miserable. We would begin each day with me literally dragging him through the parking lot. He would cling to my leg screaming. When I would finally arrive at the classroom door I would have to peal him off my body. He would then run and hide under a table and cover his hears and scream and cry. In a word it was AWFUL!

I felt like I was part of comedy parody. I had a new teacher, a student resource coordinator who didn’t understand Autism and a behavior analyst whose idea was to “man handle” my child into the cafeteria. The Principal said, “I was always so worried that you would put him back in the car and never return!” For a moment I was speechless. Then I laughed out loud and replied, “I never knew I had that option!” I almost started crying but then cracked up again.

The truth was, I knew the situation was bad but I felt comfort in the fact that the Principal helped me network with school district leaders. She also gave me her commitment to try to fix the challenges that impeded my son’s progress. I trusted her. I knew I had to work with her, not only for my child, but the others in the classroom.

I didn’t know it then but I was becoming an advocate.

Now 6 _ years later the same person who was once a Principal is now a key administrator for our school district. She observed my son in a summer general education science and math camp. Her remark made my heart sing, “I can’t get over how social your son is!”

We had come a long way from being a scared child who chewed the arms off his shirts out of fear. It took a lot of hard work. Most of all, it required me to become an advocate.

I have made plenty of mistakes along the way. But here are my top 10 tips to help any child thrive.

1. Have a Clear Vision: The key to achieving any goal is to have a clear picture in your mind of what success looks like. You need to be able to define it and to give specifics of how you will know you have arrived. It sounds simplistic but visioning is the process of goal setting. So often I talk with families and they want someone to offer them a “menu option” to help them to identify the path. The truth is that every child is different and the gateway to success depends on each child’s strengths and weaknesses. Bottom line: there is no “one size fits all” approach.

2. Identify the Cast of Characters: Even when you think everyone is against you, there is always one person who identifies or understands what you are trying to achieve for your child. Ask for their input and help to refine your approach and to engage supporters. One mom put it best, “Be focused in your goal, be consistent in your messaging, build consensus with a core group to move forward.” I couldn’t have said it better myself!

3. Determine the Best Way to Unite the Decision Makers: You may need to, “divide and concur,” by having lots of, “meetings before the meeting.” This is the stuff that sends working mothers into overdrive, and non-working mothers to feel like they need to be paid for their time! The reality is that if you want to achieve different results – you need to challenge yourself for a new outcome through an innovative path that you have not traveled before. Building relationships takes time, but it delivers the greatest return on your investment.

4. Gather Data: “Emotion muddles the water,” that being said you need to boil your case down to numbers. Statistics speak volumes. It’s a great strategy for overly emotional beings like me, “the Ubber Mommy Bear!” When you can present information in a numerical manner it takes the drama out of the situation and brings clarity to the problem that needs to be addressed.

5. Rally the Troops: Often children with special needs show their talents to different people and in varied settings. It’s best to bring as many folks to team meetings and IEP’s (Individualized Education Program) as possible. The “more the merrier.” This gives the team a more comprehensive view of the child and the potential for a more innovative and successful plan. It also helps to feel supported when you, the parent, are nervous. I don’t care how confident you are – parents often feel like they are being judged by the school team. To some extent they are – but by bringing a group of experts about your child – shows them that you mean business and are serious about advocating for your child’s success.

6. Have a Plan for You – The Caretaker/Advocate: Quite simply, I am a mess! I have learned that when I take time for myself through exercise and/or prayer, I am a better person, and therefore, a better advocate. It’s really hard when every emotional and financial splinter of your life goes into helping your child try to succeed. I have found my greatest success is when I am rested and rejuvenated. This is not always easy for parents of special needs children as we are, by nature, jugglers. So it is essential that you find an outlet to center yourself. This time allows for you to reflect and think. For me, it’s all about the process of triathlon: swim-bike-run. I love it and it releases all of my angst. It also gives me a means to generate new ideas and feel recharged. Whatever release you choose, know that you have made the choice, to do something for you and your child’s future.

7. Keep it all: It’s a good practice to keep everything that comes home from school until the next IEP. Always keep a few examples of work for each school year. This is especially important during the elementary school years. This practice will allow you to be prepared with examples of work to back up your point of advocacy. For example, having dated writing and drawing samples can document progress/no progress. Being prepared with a neat folder shows your level of absolute awareness. It can be very powerful.

8. Confirm the Communication Plan: We have used notebooks, agendas, email and charts. They all work as long as everyone agrees on the process and the frequency. At the team meeting each year, we determine what will work for all. It’s important to have a focus that relates to specific goals. This way everyone is working together.

9. Determine the Follow Up Strategy: It’s always a great feeling when you reach a moment when everyone is united in the effort. You need to decide when the next meeting will be or how will the group resume conversation to talk about the student’s progress. It seems simple but often this step gets lost in what I refer to as a “celebratory moment.” Use the time when everyone signs on the dotted line of the IEP to confirm when the group will meet again.

10. Seek Best Practices from Other Parents and Professionals: There is no “one size fits all” strategy. So it’s important to commit yourself to being a “lifelong learner.” Advocacy is not a race; it’s a journey, so the more you learn, the more you grow. Networking through parent groups, blogs, Facebook or other social networks is a great way to exchange ideas and encourage each other. Some things I try and others I just think about. The key to being the best advocate for your child is to have an open mind.

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This post originally appeared on our September/October 2012 Magazine

Advocacy Tips for the Long Haul

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