Advocating for Your Child

Posted by Nurse Linda in Life After Paralysis on April 02, 2021 # Caregiving

As adults, we all want the best world for our children. All parents must advocate for their children in different ways. Advocacy that is not thought about is arranging play dates to broaden your child's friendships or getting them involved in after-school activities that they might enjoy. Most would call this type of activity parenting, but it is a form of advocating for your child.classroom

Advocacy is influencing decisions. Parents need to influence the decisions of school personnel, healthcare professionals and others who have decision-making ability in their children's lives. Advocacy can happen on a daily level with parental decisions, as mentioned above. If you think about advocating for your child as an everyday activity, you can build your strengths and abilities in understanding how to fulfill your child's needs.

When you advocate with a family member, friend, or neighbor, you build your skills to advocate in more complex situations. Reflect on the friendlier advocating that you do every day to help develop your skills. Think about the things you have done for your child in just everyday living, like how you accomplished that play date. The way you spoke to your parents about letting your child make decisions. What you did to get access to the party your child was invited to attend. All of this is advocacy, but we think of these things as just daily living. When you understand how you accomplished these things, you can harness those skills for more challenging needs.

The world and our nation have become a much friendly place with consideration of others. Still, there is a long way to go. Often, people do not think about the impact of situations on others. Most people live in their own world and needs. When they are made aware of a needed situation, they are often happy to help. If a situation is not in their life, they do not think about it. That is where you come in as the advocate educator.

Begin with thought before discussing an issue that is not including or functioning for your child. It can be challenging to control your passion when talking about an issue for your child. Always keep a level head. This is a challenge. When our child is wounded, we are as well. Keeping your cool will help to keep others engaged in your quest. Today's perceived enemy is tomorrow's ally.

Stick to the immediate issue at hand. It would be great to conquer all inequality in one fell swoop but realize that advocacy is small wins toward a bigger picture. If the issue is getting physical education in your child's school day, focus on that instead of complete social justice. You might have to start with your school but if necessary, work up to the school district then to the state to get the change needed. One issue can blossom into a huge job. Identify what you want to achieve. Perhaps even write it down so you can refer to it when things start moving in different directions because they will.

Educate yourself on the issue at hand. Look up the laws in your local community, the state and federal levels. There may be a law that has been enacted that has not been implemented in your area. Get the basics as interpreted by a citizen that is you.

Here is a case where this played out. In my community school district, an accessible school was built to accommodate needs. Every student with a physical challenge was assigned to that school. Parents just went with it because it was such a convenient environment for the student. However, I knew a family wanted their student to go to the local school with their already formed friends. They checked the law that stated schools must accommodate. Boom! The local school had to comply.

Interestingly, there were not many complaints about the cost although of course, it was brought up. The biggest issue was that the student would need a key to the elevator in the school. Only teachers had a key. That was the big challenge---ridiculous that should be the roadblock. But the parents had the law on their side. It was hard and unpleasant for a while, but their work in researching the law solved it. Solving an advocacy issue does not always occur so easily. By the way, the accessible school was changed to an additional neighborhood school. All schools became accessible.

After checking into legal issues, look at the history. This district created an environment that was magnificently accessible but is that the right thing to do? Shouldn't children be allowed to be with their friends, kids in the neighborhood where they already have bonds? This would have clinched it in my world but not in others' minds in the decision-making process. Still, make a case for psychological wellbeing. Highlight both physical needs and psychological needs in advocacy.

Once armed with your documentation and research, set a meeting with the first-level stakeholder or group. It is easiest if you can settle the issue at the immediate level. Meeting with the primary stakeholders will keep your process clean. People do not like to feel blindsided. You want the stakeholders to collaborate with you. You will need to engage them when your advocacy pays off.

Then start working up the channels until you get the change needed. All of this is not easy but keep going. Think about who you can enlist in your quest. You might want to include an organization that serves the group of your child and other parents with children who have similar needs. There are advocacy groups that can provide guidance and service. Some attorneys will provide pro bono (free) work to be involved in a righteous cause.

Think carefully about including investigative reporters and the news and social media. You will have strong feelings about your advocacy, but everyone might not agree with you. Media outlets can certainly work in your favor, but for a variety of odd reasons, they can work against you. Seek input from your support groups before you take your issue public. This might be the absolute right thing to do but consider it carefully as this can be a fickle practice. I am not discouraging you from this, but you need to know the ups and downs. You will have more success if your advocacy does not embarrass those you are trying to convince. On the other hand, it can engage public support to boost your cause. You need to weigh these options carefully.

Talk with friends and family. They might not be aware of your concerns for your child but can provide valuable input. I have a couple of friends that I like to run things by because their thought patterns are so different from mine. This gives me an opportunity to think about ideas that might come up that I had not considered.

One of my confidants has a very level head. Her skill set is in human behavior. She can identify reactions people might have that I did not consider. This helps me formulate a stronger, more prepared advocacy plan. Another friend of mine, we have different thought patterns. She likes a restaurant, and I don't. I like a movie, and she doesn't. How our friendship works is a mystery, but it does. Perhaps because we are honest with each other. What she really brings to the table is alternative thoughts. I might have my advocacy all thoroughly worked out in my mind. After I talk with her, I will need to come up with alternative scenarios. She can challenge my thinking so that I will have a stronger argument. Her husband also provides me with a male point of view. Gender, ethnicity, education all affects how people think. Everyone's input is of value.

Set a plan of action. An action plan will help you accomplish your goal in an organized manner. Many meetings have people talking about a situation, but they never really get to the point. Review your statement of what you want to accomplish. Then write out your talking points. You need a clear statement of exactly what you want, the points of why (both physical and psychological) and how to get there. Present legal information that you have gathered. This will help you organize your thoughts. It will help you keep on track as opposed to taking one small point without the big picture. It can also help keep others on task.

De-escalation techniques are good to have in your tool kit for any advocacy meeting. People are typically happy with the way things are currently. Your advocacy may be threatening to the status quo. Keep calm, take a deep breath. Look at the group members you are meeting within the eye. Be confident. Do not let your nervousness or anger take over, even if you feel it.

Start with thanking others for meeting with you. Find common ground that you both agree with, such as supporting children. Present your case. Let the people you are meeting with speak. Listen to what they are saying so you can politely counterpoint. Make the next steps for your advocacy before leaving the meeting. Be very clear about what must happen to accomplish the goal, even if they do not say OK at the first meeting. Thank them for their time.

Advocating seems like a daunting task. Not all of us were naturally made to be great advocates. I put myself in that category. However, we all learn. We all want the best for our children. We can do this. Nurse Linda

Linda Schultz, Ph.D., CRRN, a leader and provider of rehabilitation nursing for over 30 years, and a friend of the Christopher & Dana Reeve Foundation for close to two decades. Within our online community, she writes about and answers your SCI-related healthcare questions in our Heath & Wellness discussion.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.