So many people don’t see the value of speaking up to face challenges or make a difference in times of disagreement or crisis. Instead, they may choose to stay quiet, to ignore, or they prefer to find someone else to speak on their behalf. I often hear people say advocacy is a nonsensical reaction which causes frustration and pressure and doesn’t actually change a thing. Even now, I work with hundreds of families from different races and backgrounds. Besides their obvious differences, they are more alike than different. They all want to give their children a better life – that’s all. They come to me looking for answers, or maybe for magic solutions to their problems. In fact, my main advice is always the same: You need to advocate effectively. The majority tend to react negatively to my comment. Phrases like, “I have been doing that for years. I’ve already said those things. I know what you are saying, but it doesn’t work,” and they go on and on.
I understand advocacy is often frustrating and it happens that the other party seems to be indifferent most of the time. I get it. Parents become desperate and hiring a lawyer always seems more effective, but let’s be honest, the power invested in advocacy is not about legal terminology but about personal experiences.
- It is the perfect balance between objectivity and individuality
- It is the ability to make others raise their expectations of your child appropriately.
- It’s the expertise of your child combined with the ability to apply knowledge in an individualized and unique way.
Advocacy is indeed magical; even though its magical outcomes don’t often come quickly.
My advocacy “aha” moments have come in three.
First: 2010
I didn’t know what I was talking about, but I knew that my children didn’t belong in a segregated classroom. At least not one in which children were not challenged and were horribly relegated to the darkest and most isolated corner of the school. My children were never allowed or challenged to have interaction with their typical peers in this setting. It was one in which they spent days separated from the real world. I chose to speak up. I asked for higher expectations to be placed upon my children. I asked for inclusion. I asked for better and equal opportunities. And it happened. But it wasn’t easy. Gaining the confidence to speak up was a challenge for me, but it made a difference. This first time, I didn’t speak up from a place of knowledge or expertise or experience. I spoke from the bottom of my heart. I spoke from the personal expectations I had for my own children. I didn’t give up on my dreams for them based on other people’s limitations. So, even though advocacy shouldn’t necessarily be emotional, it cannot be emotion-free because as parents, if we put our feelings aside, then we are giving away our most significant power: the love we have for our children.
Second: 2014
Emir was in 4th grade. The teacher was not qualified, but as it happens, Emir’s condition was identified as the primary cause of the problem. It was incredibly hard to try to advocate without offending or blaming someone else. It felt impossible to find the balance in perspective to exercise self-control. It wasn’t easy. At this point, I realized that advocacy is not a one-person job and as parents, part of our job is to identify allies. I didn’t want to punish the teacher for not being a good teacher or for not knowing what to do. I just wanted my child to be in the right place to continue his journey to inclusion, and so it happened. I didn’t achieve this alone. Emir’s whole team finally came to an agreement, a positive one that I was a part of. I chose to speak up instead of deciding to stay quiet, and it was the best decision for Emir. Years later when Emir graduated from Elementary school, we all took pride in his growth and his success, because it wasn’t only me but a team of great people who rallied around me and decided to believe in my child.
Third: 2017
Emir goes to middle school. This one is tricky. I am not the emotional advocate I used to be seven years ago when I asked for inclusion for Emir. I have the knowledge, I understand the law, I love reading about special education and have a solid understanding of how things work. I can speak clearly, and I know just how to prepare for a meeting. Therefore, I pushed for Emir to have a personal assistant for the first time. It didn’t happen. Instead, I was offered an ESE teacher support for him and natural supports to help him gain independence. I did my job. I met with everyone involved. I listened to them, and I decided to trust them. Again, I did this with the support of a great friend of mine who kept my focus. (Thank you, Donna.)The critical question that I always ask myself in times of crisis and stress: Are you making this about you, or is this about Emir? I made it about Emir. I decided to speak up, and with my voice, I created an excellent discussion that wasn’t always perfect but was very productive in the end. Advocacy is not about winning or losing, advocacy is all about working together.
What have we achieved as a family, Emir, Yaya, and I? Emir is doing a great job in middle school. He is fully independent. His ESE teacher is fantastic and is providing formal and informal supports to facilitate his inclusion. His communication! OMG. If I had to choose one thing from all the rewards inclusion has brought to our lives, I would go with communication without a doubt. This guy can talk!
Ayelen, being as unique as she is, is following Emir’s steps in her own way. Her interests are entirely different and even though I don’t know what the future holds for her, whatever comes next is going to be easier for her than it was for Emir.
As for me, I am so happy for my children, and I can tell that when I have chosen to speak up, I have made a positive difference in their lives. I don’t know what life would be like if I had chosen another path, but I think I’ve made the right choice. Knowing that advocacy is not a choice that makes things possible immediately, but a skill that you develop over the years has kept me focused. Advocacy serves as a commitment to keeping your eyes on the prize, and a celebration of individuality and love. To me, that is the real meaning of advocacy. And yes, no one else can do it better than us, parents, even though, we cannot do it alone.
